Smoke and Mirrors

Reminder!

2011-08-19T15:53:00.000-04:00

Quick reminder, Smoke and Mirrors is RHILOADED! Come join us at our new blog at http://www.rhiloaded.com and be sure to follow and continue to share and comment!

Thank you for your ongoing support, see you there!

Up and running!

2011-08-02T03:17:00.000-04:00

Dear readers and followers,

As the previous post said we are moving, and the archives are now posted on the new blog site, as well as the new follower button.

Please click the follow button, be free to leave comments (they work now!) and please continue to join me in this battle.

Thank you to BigJim for surprising me with this new blog site, and please to join us at www.rhiloaded.com!

Thank you for coming with, and the ongoing support is incredible. See you over there!

We are moving

2011-08-01T02:13:00.000-04:00

Hi everyone, with some blogger issues plus a surprise from my dear friend, this blog will be eventually moving to http://www.rhiloaded.com/

Thank you all so much for following me here, and this is such a welcome surprise. I hope that you will continue to follow my journey, and comments as always will be welcome (and hopefully easier) to post and stick on the new site.

Much love, and hope to see you on the new site. Please take a look at the preview post!

Instincts

2011-07-25T20:29:00.001-04:00

Nothing feels better than having a doctor agree with you.

Had my GP appointment today and again, I am so lucky to have found her. She is wonderful, really trying to get some answers - and is very much on my side. She even says I look great, much better than when I first saw her last year.

When I mentioned the dermatologist put me on Tetracycline, she said "No, you don't have to take it, it is a horrible medication." Done, awesome. No more TZ's for me. She gave me a prescription med for the
same results wanted but it is a topical cream. However, this is not covered by my current drug plan so full pop is very expensive and we'll have to see what we can do about that.

Again she wants me to increase the LBP (amitriptyline) dose - so I am considering that, but I do not want to balloon up, I know that shouldn't be a concern especially from where I am coming from - but it is a concern, I don't have the funds for new wardrobe if I do.

She ordered new blood labs, full round of ANA's to see where that is now as the last ones did show possible remission for lupus however that could be false since it was shortly after the blood transfusion. 5-6 vials of blood vampired today, plus other samples had to be given.

Next will be starting the official path for MS testings. I wait for the call to go into the hospital for these rounds.

Never ending, always a mystery - however hoping for more answers, even if they are non-answers.

What it is is hard to determine, what it isn't is almost harder. "Are you there doc, it's me, Rhian.

One more tripped out even of the day, I drove home. My usual 3 mile walk round trip - I drove home. A real car. The drive was fine but due to the pain it was hard since the pain in my legs and feet is so bad that I had a hard time feeling the gas pedal - I sometimes had to physically look at where my foot was. Interesting, and much better than before since I never thought I could drive again, this was quite the big accomplishment!

For What It's Worth.

2011-07-23T22:48:00.000-04:00

7 days on the immuno's.

I have decided that I hate them, it is not worth what it is doing to me.

Honestly I am trying to be very good and responsible - in that giving it a real try with at least a week in and tracking everything I am being fair.

I am not myself, a zombie, the effects are so bad all I want to do is sleep. Once I take the first dose of the day, 500 mgs - it hits very fast, and thank you but it is not psychosomatic. The nausea is right away, very hard. I can hardly move. After the 10 minutes, I am allowed to lie down and just hope I can sleep the rest away.

The first few days I felt like I had a blood bubble in my throat. I've had headaches worse than any migraine I have ever had - and I got them severely - ones that lasted years.

My mood is bad, whether that is reacting to the meds themselves or the unknown to what is happening.

Part of me is saying that I need to go through this so that I can prove to my doctors and everyone when I say I have severe reactions to meds, that I am not joking. I called Telehealth with the long list of side effects I am experiencing yesterday and they wanted to transfer me to 911, so I know this is not just me, nor is this normal reactions.

I have a GP appointment on Monday, and will hope for some real advice to what I should do.

Frustrated, sad and pissed off. I know this will never end, until my very end. Not sure this trouble is worth it to put myself through as it seems more harm than good.

I DID IT!

2011-07-19T23:13:00.000-04:00

Remember what I said about being a rebel? Perhaps it's not just that, but I'd like my life back. Or maybe it is. I didn't take the immunosuppressants today because I didn't want to be a zombie, I had big plans.

Despite going back from horrible-I-can't-leave-my-bed I spent today in the usual-horrible-sever-no-good-very-bad-pain which was very welcome. I opted for a day off the TZ's (my name for them) because, I was asked to be a background performer for a new CBC TV series that will start in September of 2011.

I was asked to pack 3-4 fall outfits, 2-3 fall jackets etc, and a business casual outfit. I don't own anything business casual, just jeans and tanks or fancy dresses, and my old dance teaching clothes. I was first to be seen by wardrobe after I was checked in (home base was a rented apartment) and got changed to full fall clothes in +30 degree Celsius weather. After about an hour, 3 guys still hadn't shown up. The wardrobe woman told the agent/wrangler that Darren was waiting for me reading across the street and we should use him.

The adventures begin, and I start to call other friends to see if they'd like an escape from their days and make a bit of cash. The wardrobe woman was spunky and fun, and one was in dire need of help. My friend's first advice to me was to wear real underwear. This one should have taken the advice...walking by, we all got full moons. I full on facepalmed, and some of the crew and the other performers laughed. I apologized but really.

I was extremely nervous about the physical requirements I would have to do, since I still can't do normal easy things, very easily at all. After 3 or 4 hours, we are to walk from the apt (which had front stairs) about a block to a pub (which had stairs to the front door). The crew were dismantling this set, and we just had to do more hurry up and wait (which never bothers me). We were fed, a really nice pasta and veggie bowl. After this we were told of a shooting change and back we go to the apartment (up more stairs and up even more). We snacked more on chips, cookies, and drinks until we were herded again across the street in the shade, which was nice, and me being the rebel I was, I refused to bring the chair - meaning sitting on the ground. Hard enough to get down, impossible to get up from on my own - but I had help from Darren so it was okay (ish).

Getting to the set, which was a public transit bus and some of us were given props, and we were riding a bus. The people waiting for buses in the area were hilarious, watching them try to board; pushing their faces into the glass and the sheer shock and awe was wonderful. Trying not to react to them was fun. Scene is over, we are back on the lawn, but it's okay because I have help. Until he is called away to do another bit on the bus. No worries, we'll wait for them to get back and head back to the apartment. Unless we get called to the apartment before then, which happened. I'm sure my face fell. I had a very hard time getting up - needed help from some of the performers that we were talking to. They helped me up, across the street, up the stairs but by the second last stair, my body buckled. I was terrified of not being able to control my fall. Thanks to very kind people, I was okay. But by then my body was done. Shortly after that, we were wrapped and changed, checked out and waited for the last of the people to arrive.

This day was so much more than being in a TV show for a few seconds, it was the ability to do what I never thought I would be able to do again, yes with many alterations I need to learn, but I did it. I have always been a performer, and always in the media - I however disappeared from the stage/screen/anything public for so long.

Plus, I get my first paycheck in eons for the day. This is such a happy, phenomenal day for what it really means. Hopefully this is just another beginning, not just another beginning of more challenges, more meds, and more crap.

I did it! I am so much more than this illness. I am still me. Love me or leave me.

Rebel

2011-07-13T21:59:00.002-04:00

Rules? Who needs them. I've never been a good one to follow rules, however this being so sick crap I might have to be. My natural instincts is to do the opposite of what I'm told. I'm not a brat, or an asshole, but I don't like being told what to do. I am my mother's daughter for sure and that's why we tend to get into trouble whenever we are together. It's the only life I know.

I got my Immunosuppresants tonight, and the booklet on the rules should be a novel. This will be hard. The pills are huge too, and if I do have to take them with me anywhere the bottle won't fit in my little red purse. Yes I know I have pill separators, and smaller containers but it's the principle.

The rules:

If in sun, highest sunscreen/hats/sunglasses
but don't be in the sun.
Empty stomach, 2 pills twice a day
Do not lie down for 10 minutes after taking the pills.
Don't take it at bedtime
Nothing containing magnesium, 2-3 hours before or after
No Calcium 2-3 hours before or after taking the pills
No antacids, buffered tablets, vitamins, minerals.
No dairy, or zinc.
No iron (This is the big one since I need iron to you know, keep alive).
No aluminum - yes including applying deodorant 2-3 hours before or after taking the pills.
No juice

I will really need to track everything that I do.

Tomorrow I start in the adventures of immunosuppresants. If you have a cold or a flu, I love you but please stay away.

Today Is a Good Day

2011-07-12T18:57:00.001-04:00

"Lupus is a life-altering and life-threatening diagnosis" says Catherine Madden, Executive Director of Lupus Canada. "This incurable disease impacts and destroys many organs in the body and can cause constant pain, immobility, and organ failure just to name a few. Lupus is seriously under-recognized and under-funded but dedication to new therapies and new research fuels hope for a cure."

http://www.istockanalyst.com/business/news/5285144/health-canada-approves-benlysta-tm

Imagine my thrill when I woke up to the news that Benlysta was approved by Health Canada today. I was expecting to wait years for Canada to catch up to the United States and England. Not to be a downer, I never thought I would see it be approved or that I might have a chance at even thinking about this.

I have an appointment next week to see what I need to do to see if I will be eligible for this treatment - the first direct Lupus medication in over 50 years. The cost is astronomical, I have never made in a year what this price tag says. That will be dealt with later, once I see if I can be on this.

I will be starting an immunosupressant this week, as much as I don't like pills, there is a bit of excitement inside me to try rather than refusing chemo over and over.

The other bit of good news is since making payments for the mobility aids is very difficult, I have started the process on being approved for a real wheelchair that could be funded - this will help so very much. I will also be (against my pride) getting a walker, so when I do my 3 miles maybe the walker will help and not be as awkward as the chair.

I still have those damn stitches in my face.

At least the walker is red.

Praise the Bendy Straws.

2011-06-28T19:03:00.001-04:00

Before Biopsy

Today was my appointment at the palliative care hospital, and since I know that they don't manage chronic pain in the pain clinic, I was very skeptical. I had to do this appointment as I was referred a year ago by the city's Lupus Specialist and he wouldn't see me until I met with this specialist who was a dermatologist.

The doctor was very kind though, and he knew all about SLE and pain and fibro. He had a gorgeous accent that I can't place, but it put me at ease when I went in with a bit of attitude - at least in my head. He went over my last blood work, again from a year ago - and my ANA's went to negative for the first time so he was wondering if Lupus is in remission and that it is mostly fibro that is attacking now. I told him about the experiences and that yes, my lupus was textbook.

We talked at length about it being heard of to have false negatives with the ANA, but he did support and believe the lupus diagnosis (5 doctors have also confirmed SLE since my initial Dx).

The shoulder rash he believed was more SLE evidence, but he wasn't sure about my face rash if it was the malar or rosacea, however the treatments would be the same. He was concerned either way and shook his head that I have to endure this 'mystery'.

We discussed medications, and he suggests that I increase the Amitryptine, Lyrica (I tried not to scoff), Plaquinel, but he also suggested Methotextrate (Chemo) as his top med for me to start.
I'm still not okay with that.

As he examines me after the discussion, he says 'biopsy'. Since I was there, and have no car and have a very hard time getting to appointments as it is, I agreed to it just to get it over with. He gave me anesthetic and after a few minutes he does the biospy, however the anesthetic didn't take - and it hurt, alot. He picked a part of my right cheek, apologizes for the pain and the scar that I will have after. I was to continue lying on the exam bed for a while, and he came back and only then did my face start to go numb. I didn't realize until I felt threading and a bit of digging in my skin that he was stitching my cheek up.

The freezing is coming out as I write this, and the pain is increasing steadily. The stitch should dissolve in a week but I have to keep the bandage on it also for that long. I look and feel like a monster. I find it hard to talk and yawn, eating is a challenge.

Praise be to the bendy straws!

After Biopsy

Lupus Isn't Pretty

2011-06-27T22:45:00.002-04:00

I came across an article today on webMD, the author and the link to the full article are cited below. I must address these points as are from my experience. I have read numerous articles that have similar points - while I know I am a very advanced case, I have to reply.

Managing Lupus Pain: Finding What Works Best for You - Full Article - http://bit.ly/mShkEc

Christine Miserandino

• Exercise. Some people who have lupus swear by the benefits of getting regular exercise, while others can't get out of bed, and find it close to impossible to even think about going to a gym.

As a dancer, being active is still so very important to me. I can barely walk now. I try, and admittedly push it against orders, but I need to do what I can. Yes I am mostly bedridden, so I try physio from bed and use my body as I can to get stronger. When someone says, just use the stairs, it's good for you, it's not understanding the physical limitations that are stellar. It is not easy to make it to the bathroom, forget Zumba (which I would love to try).

• Massage Therapy. A soothing massage can help ease muscle tension and aches, but if you are sensitive to touch due to fibromyalgia or any other condition that is secondary to your lupus, this treatment might not be right for you.

My pain is much more than aches. I understand many people undergo similar and when air hurts, a slight breeze, the thought of a massage isn't going to work unless the practitioner understands the true nature of the disease and the consequences of the impacts. The costs are high for such therapy also, while it is so lovely and I was lucky enough to be sent for a massage from a good friend once, my RMT was very knowledgeable. However on an ongoing basis - not an option as stated in the paragraph, my lupus pain is also severe, as is my fibro pain, and my RA pain. Pain in many many layers at the same time are hard to understand even to us going through it. What works one minute might not the next. Think about the consequences - bruising, impacts, blood clots, etc. More than just an 'ache'.

• Medications. Many patients work with their doctor to find the right combination of medications that may help reduce pain.

The combination of many medications, plus other medications to manage those side effects, plus more to manage those side effects is a dangerous spiral. I have mentioned many times that I am not a candidate for most medications, and due to that I won't put myself through that nor do I have the cost involved in using such medications. I am happy that people can find a cocktail that works in managing their symptoms. However as said 'Many' patients can work with it, but then others do slip through the cracks, as if you actively follow my story you can see.

• Other Strategies. Some people prefer to try heating pads, yoga, meditation, physical therapy, or similar measures that can help decrease the pain of lupus.

Sometimes heat helps, sometimes cold helps, but it's again not a rule such as 'always use ice for swelling'. Yoga, please refer back to the first rebuttal. Meditation, no amount of unicorns/rainbows/waterfalls in my head works. Yes I have worked very hard on physio, does it help my pain, not one bit. However I have gotten stronger and luckily I kept the dancer flexibility I have always had.

I am frustrated and very much at my wit's end from the day I have had. Part of is when I hear a "Have a pain-free day!" That would be wonderful. It won't happen, so it is another reminder that there is nothing for me, and I am but one voice.

The real story needs to be told since this is such a misunderstood disease, even by people that are living with it. Living with it does not always mean fighting it.

Chronically Awesome

2011-06-25T04:59:00.000-04:00

It is very hard when you are in so much riddling pain to know what is something new and to get used to or to get it checked out.

You know that my life as a ballerina causes alot of injuries for the sheer nature of the career.

I have sprained, broken, twisted, fractured many bones in my feet and legs, and somehow this week I woke up to not being able to walk. Again, but for different reasons.

My right side was out of commission, needing my chair in the apartment for the new pain. In my head I don't know if this needs to be looked at or if staying off it will work or at least help.

It feels like intense pain but with my entire leg doing a 180 turn on me with no warning, but I couldn't walk at all. Today is a smidge better but I still need help to walk and I can't use my chair on my own if I am sitting in it.

I refuse to sit in the ER for 8 hours when there is nothing tangible they can do, I am not in an emergency situation, it's just I can barely walk.

Oh yeah and I can't tolerate this layer of pain. I am like a a reverse onion, more layers and more layers to deal with but with no compromise.

There is no "hey buddy, I need to cause some hell, how bout you step off and take a break". It is another reminder that I am losing so much, and something else to get ready for, and try to get used to.

Please be gentle with your #chronicallyawesome friends, and we need support alot even though it's not always said from us.

Many diseases get the attention, however, still - lupus and fibro and RA etc don't get looked at all but it is so difficult to live with day to day.

Someone you love is sick but you can't see it.

Thank you for seeing it for me and for many of the people that are in my life and love.

Easy Breathe-y

2011-06-08T18:45:00.000-04:00

My cardiac tests came in yesterday, and when I called my doctor to update on the ongoing and worsening chest pains she asked me to come in as her first appointment of the day.

I have had such worse pains, which I thought must be costochondritis, causing major coughing and even bringing up blood. As expected, my cardiac tests came back clear adding to the ongoing mystery that surrounds lupus and other invisible diseases.

My doctor is really wonderful, she doesn't rush, she talks with me - not at me. She really tries to think outside the little box. I am so lucky to have her. She gave me PFT Test in the office and compared them to the first one I had a year ago when she took me on. Those results immediately alerted her that there is a "Severe Obstruction" and it is serious enough to seek more answers. She isn't sure why or what is obstructed and sent me for chest xrays and a prescription for a small ventilator that I need to use 6 times a day (according to her Rx). The other odd thing is that I don't have asthma, my allergies appear as migraines or sinus headaches so possibly this is due to the lupus attacking my tissues and organs. She did confirm costochondritis but said that should not affect my coughing and breathing so much.

I asked her about the codeine experiment, and that is a no go. As explained to me, it should only be used for very short term, and as advanced as my illness is it would be very dangerous because my body will quickly get used to it and then I will need more and higher doses and never get off it. It is not for chronic pain. I will miss the codeine sleeps.

Hopefully there will be some answers or at least clues from this next round of tests. I know and understand I am getting worse and won't get better, but a bit of pain ease somehow would be wonderful.

My doctor also said that I looked better than she's seen me. That's something right?

Cardiac Don't Mess Around

2011-05-26T19:09:00.002-04:00

One great thing that medicine doesn't take it's time for is chest pain. I had an appointment within a week. I went to the hospital today for cardiac testing. Every dopplar/ekg/ultrasound I have ever had has been very traumatic, yet I wasn't as nervous until right before. However stressing out before cardiac system tests would not be so good.

The tech was very kind and very gentle with her pressure, although points did hurt quite a bit of course. Luckily there was nothing that showed up as emergency, and I was sent home.

I'm now feeling extreme pain, intense pressure on my chest and into my spine, and same pushing on my arms, shoulders - my breathing is a bit laboured. Still, I have been through tests that have been much worse. During the test some was audio, I said, see the elephants ARE in a rave in there!

I am 99.9% sure this is costochondritis, and not my heart itself - yet I know this will be difficult to say that it is, but much easier to say what it isn't. This is possibly the most frustrating thing about lupus, and why awareness and education all around is so important.

On some good news, there is help coming - help that will be available to keep going as I am, with help to and from appointments/tests, and help with social services to help advocate my case for disability.

I am not used to 'powers-that-be' in my corner and I am still in shock and a bit overwhelmed over the entire reality of the situation, but I feel much better and partly my resolve in human decency has returned a little bit.

People do care. It takes a ton of fighting, but it is worth it to find those that will fight along with you.

Now I have to stick things up my nose to get rid of the hospital smell.

Suck It, Dr. House

2011-05-23T13:53:00.000-04:00

For Lupus month, I had the opportunity to be interviewed on my experience with lupus, fibro and RA. It is a very raw look at my life, from when my body started to turn on me and the entire story.

Please do listen to the show, share it, and comment. It is important to spread awareness, and have the REAL stories come to light.

Thank you for sharing and supporting.

The show is found at www.uncast.net - Show #206 - "Suck it, Dr. House"

Thank you Daniel and Victoria for allowing my voice to be heard.

Giving Up?

2011-05-17T20:41:00.002-04:00

As living with any chronic illness, we have a number of barriers to overcome daily, and every minute. Sometimes it is hard to wake up and deal with another day, entirely in pain unable to do what we used to. Because these are invisible diseases, we don't have scars that people see and we have alot of judgments.

Some judgements come with a 'why are you not trying everything possible, you are giving up, letting your disease win'. It is not that easy. This post is inspired by this article I read from Lisa Copen writing for the Huffington Post - http://www.huffingtonpost.com/lisa-copen/is-living-with-illness-ch_b_853990.html?ref=fb&src=sp

In my journey so far, I have been told I am giving up, when I am refusing certain treatments. My reasons are based upon what my doctors have suggested, my questions to them and other medical and pharmaceutical professionals, and my own research including my own body.

As I have mentioned in previous posts, I do not respond well to meds. I cannot take anti-inflams, NSAIDS, and the like. Being on such medicines, then going into the cycle of more meds to counteract side effects, on and on, I cannot afford costs nor can I afford what it will do to me. I am constantly amazed at how many people take whatever is prescribed blindly, without knowing what they are on nor the risks associated. This is giving in.

I have been through radiation, and I do not want to do this anymore. I am and will continue to refuse chemotherapy. Is this giving up? I do not think so.

I am in this journey on no meds, but I still try to make it through a day. I have lost everything, but I am still me inside and I won't become a zombie and wait for everything else to pass me by.

I am stubborn. Giving in? No. Realist, and taking charge of what I can with what I do have left. Yes.

Kindness, Strength VS Douchebags

2011-05-14T03:41:00.003-04:00

In previous posts I have mentioned that I am rebellious and stubborn. I still have learned from my mom for this all.

Today was beautiful out, and I expect that these next few days are going to be stormy and heavy rain according to the reports.

I needed to go outside today. My balcony didn't cut it. I put real (kinda) clothes on, and grabbed my wheelchair, and hit the streets using the chair as a walker. Not so fast though.

I thought I would add a bit to my physio to walking a wee bit in my apartment building. I ended up to the lobby, stairs down, then stairs up to outside. So I tried. Done. I thought, okay, maybe I can make it across the street.

Done.

Maybe I can make it across to the lights on the main street, done. HOLY SHIT.

I kept going, and going, to the mall, and back. Each little step was a new accomplishment.

In the end, I did over 2.5 miles of walking. Plus 4 sets of stairs, with about 5 each, with navigating my chair too.

The one thing, once I got back, and I have never done 55 minutes on my own feet straight in years was taking me back to why I hate my city.

A youngish guy that lives in the building saw me struggle with getting my chair up the stairs to the elevator. It is the only way to get to the elevators, and then he slid into one of the open elevators without a help or an offer.

That is fine. I didn't expect, but wow. Just proves my point about people not giving a shit about others. Disgusting.

So to be as selfish - I went 2.5 miles round trip. Not sitting once. 55 minutes, total. Including the real people talk time I did along the way.

I won't be able to do this again, and if so not for ages, maybe. Such is the way of these chronic illnesses.

And those of you that do read, I know you would do support and help if you saw anyone in my position, because most of you know what that is like. You all know I don't bitch much, but that my lack of bitching doesn't mean this shit is a party. Thank you for supporting in that I can't do.

Heartfelt thank yous to you all that DO care. I trust my fragile life with you.

How I Spent World Lupus Day

2011-05-10T18:02:00.000-04:00

Today is World Lupus Day. I thank everyone that has been spreading the truth about Lupus, and how serious it really is. Thank you to those that have flooded social media and blogs about awareness and education. We all know that this is serious, yet still takes a backseat to the 'big stars' although does so much damage and is usually fatal.

Year 4 into my 2-10 year range I have of living with this, and I find myself in the doctor's office today.

Overall, I know there is not much that medicine can do for me, and in light of other personal battles it is that much harder.

I am so grateful to this doctor that has taken me on. She is very thoughtful and doesn't rush me. Perhaps I am the only person in the universe that doesn't mind waiting for doctor appointments because that shows me she cares about her patients and will take the time they need. That is very important.

I explained the new chest pains, and she is sending me to have more dopplar and echo grams done to see if it is damaging my cardio system and if not then WTF is this now? I will have to go to the hospital again for these tests.

My blood pressure is low, but it's not very concerning to her - which is nice. I believe it is low because I am just not as mobile. I'm sitting comfortably at 100/70. She even put the description of the pains as 'elephant party'.

She was kind enough to (I think) discount the papers for my CPP-D - which is the Canada Pension Plan that all Canadians pay into on every paycheck, like EI etc. I was expected to pay double what she asked, and wasn't sure how that was going to happen as it is.

When I asked about Benlysta, (the first new drug in 50 years to directly treat Lupus) she confirmed my fears. Since it is now available in the US, granted by the FDA, it won't make an appearance in Canada for at least 3 years. Not sure that I have that long to wait, so it is daunting coupled with the price tag - making both points very out of reach.

My doctor asked about my specialist, and was markedly pissed off at his handling of me. This specialist said last August that he won't see me until I go to the hospital to see a dermatologist. Even though I have all the signs and blood test markers for Lupus, he wants to make sure that damn butterfly rash is what it is and not just adult acne. Dude, I can assure you this is the malar rash. She insisted that I call (as I did before I left for San Diego) and say that I need to get in to see him, and that this dermatologist issue was silly.

She gave me 3 more refills of the little blue pills, down from 25 mgs to 10 since I split the 25 mgs as it is now. This will help greatly because I have 1 refill left and it is not easy for me to get around now that there is no car.

The day wasn't terrible, but it always is tough, physically and emotionally.

As I was going through the papers to get them ready for mailing, the final box was "Patient's Ongoing Progress..."

The answer she put was Poor.

Black and white is hard to read sometimes.

Roses and Laughter

2011-05-07T21:01:00.002-04:00

Mother's Day often comes round every year with many emotions. I have been lucky enough to have the mother that I have. We both say that we raised each other. From day one, it was her and me in the world, even though we did have other family too, but we had this unmistakable bond.

She taught me humour, adventures, to be strong, to move on, to be.
We are best of friends, and still you can't take us anywhere without our rebel streaks and glints in the eyes that come out. Usually followed by fits of laughter and tears. We are very much alike.

When I got so sick, I didn't want this 'adventure'. I found no humour, I wasn't strong, and I hated myself greatly, wondering what I had done to deserve this. I never felt sorry for myself, but it was frightening to witness new terrible things happening inside me, and that I almost fell to the illness already.

We went through a very tough road, to the point where I couldn't have her 'vent' to me about my being so sick. She said that we were best friends, and that's what we do. The hardest thing I ever said to her was, yes, we are, but right now, I need you to be my mom. Snap. She has been amazing in taking care of me. She still sees me for the real me, the same adventurous, humourous, rebel little child I was. I am not just sick. I am still me in here despite us all watching how my body is destroying me.

I know not everyone is lucky enough to have a mother like I have, and things have changed greatly.

Happy Mother's Day, no matter who you celebrate with. It is a day to celebrate.

I wonder if my cat got me a card?

World Lupus Day - May 10th, 2011

2011-05-06T00:53:00.001-04:00

In addition to the severe pain that changes lives. This is real, and can be fatal. We need attention and awareness. We need hope.

Image reblogged from http://whatthejules.tumblr.com/

Canada Goes Dark - May 2nd.

2011-04-21T20:28:00.002-04:00

Elections Canada reminds Canadians it exists, and will charge them $25,000 for tweeting voting results

The time has come for one the country’s political traditions: Elections Canada trying to stop people from spreading information about voting results on election day. The good people at EC are reminding the nation’s broadcasters, as well as every Internet user, that sharing such information is strictly prohibited, and could earn violators a $25,000 fine. According to the Montreal Gazette, few are thrilled about the prospect.
Full story: http://tinyurl.com/3jptfmp

Last I knew, Canada was a democracy.

With social media - sometimes is it the only connection to the world for many, especially for the chronically ill. I have outlined in archived posts about my difficulty with the voting process.

I have emailed Elections Canada and my MP explaining my troubles that I have in accessibility to vote, and express my right as a Canadian. The application to vote while away is already faxed and in the offices and I am still awaiting any answers. I take this very seriously. The way to vote via proxy is to go in person to sign many pages in front of a City Clerk. Again, that does not address the access trouble that is the entire point of my issue.

Surely, I cannot be the only one with this roadblock in the entire country.

Canada, please vote for change. Our country depends on it.

Fading Away

2011-04-18T18:41:00.002-04:00

"No system is perfect, but at some point society must focus healthcare costs toward the 97% of those that can be cured."

This was a response to my last blog post. Yes I know I am the exception, but it is important to share my story so people can understand what does happen to some - and the misconceptions about universal health care.

I have had nightmare doctors, the quality ones are very hard to find. The ER doctors are meant to save lives, and despite what I do and need, I do not take advantage of this - as other people do going to the ER for a flu. I have only gone in dire emergencies.

Some facts about my disability application so far:

*To apply for provincial disability it is a first a phone assessment, financial only. Gross, not net, and not taking any deductions into account.
*You can try to appeal this, but it is very difficult to even talk to a human.
*Canada Pension is part of what is taken off on every standard paycheck - (along with taxes and employment insurance)
*In order to apply for that, you need to apply within two years of your last work day.
*Despite this is your own money - not a social drain on the 'system'.
*The application booklet is thick, and requires alot of doctors to write - which can cost upwards of $100 per doctor. (see the cycle starting)
*Corruption example - There was a cop (working in the same union branch as me) and he was stealing drug evidence. Got hooked on meth and heroin. He is on full disability and cop pension, no questions asked.
*Canada universal health care is not free. (see my previous blog entries)
*I have had nightmare doctors (2009) that made me slip through the cracks
*At what point does the medical system give up on me? I am not depleting any social financial systems. Everything I do is paid out of pocket. Hard on zero income.

So if it is common consensus that I am of the 3% that has no hope, then I am just waiting to leave this earth? I am not giving up. The system is set up to give up on those of us that are deemed hopeless.

Thank you society. Very much. I hope it's not much longer I have to deal with you then so you can carry on. Awesome.

Debate

2011-04-17T07:04:00.002-04:00

Really? Yes, I have lost just about everything. And possibly more. Yes I am from the highest taxed country in the world. Canada health care is free until we get sick. Consider this. Canadian wait times, I know this is over 6 months - I have been on the waitlist for specialists, from specialist orders for over a year. Am I terminal? Yes I am. People die on this plan. I can't afford the meds scripted, it's not free. I have severe allergies to most meds, so I refuse to put out money that I know will be not helpful. I am slipping through the cracks because of the system. I am fighting, and being proactive. The universal health care is not all glitter and rainbows. If you have read my archives, you have seen my journey to date. For that, I thank you.

Four Years In.

2011-04-11T02:34:00.000-04:00

Four years ago today, my life stopped as I knew it. I was given the diagnosis, cried with my doctor, as he gave me 2-10 years to live.

When I was diagnosed, it was such devastation. Everything I worked so hard for. Done.

Hearing words, and understanding them are different. There was no mistaking this. It was already very severe as it was attacking hard before we knew what was happening.

I was to have a doctor's appointment today with the new doctor - ironically in the exact same office that I heard the news from the doctor that discovered it. He told me to go south, and just do what I could.

Funny how things turn out.

The pain never ends, it's complex with many layers of different pains all at once, everywhere.

It is very hard to not be upset. I've done my grieving, and sometimes accepting, but it is still so hard to live with this every minute of everyday.

To those of you that have been with me every step, I can't say how much I love you enough, and I thank you.

To those of you that I have met on similar journeys, I'm sorry you are dealing also.

I'm not waterfalls and rainbows thinking positive will cure me. I am realistic. Pain-free will never happen. Pain-less, will not happen.

I hope that I am the same person. This did not make me stronger. I have been strong my whole life. It's just me. I'm just sick. Very very sick.

Thank you for sticking by me and holding me up.

Four years ago today changed my life. We will see what the next six bring.

Inspiration

2011-03-24T19:33:00.001-04:00

Everyone has someone that has impacted them in some way. I used to run in fairly high-profile circles, and people of celebrity or such status never phased me. We are all just people. As long as you aren't a jackass for the sake of being a jackass or hiding the true you to harm others, we'll probably get along. At least I will go in with the intent to like you. Cross me though, no matter who you are, we are done.

There is one inspiration for me that has inspired me my adult life. We have a connect, and I cannot believe I have not met her yet. Today, I had to take a chance - something I can't pass up - Oprah is having Stevie Nicks on the show. I submitted an essay and 3 pictures of myself to the show. It is not something that I would usually do, however I would like to share a bit of someone very special to me with you, and in my hopes to thank her in person for what she has done for me.

*************************************

Stevie Nicks has impacted my life in so very many ways. I was a professional dancer and teacher (ballet, tap, jazz, lyrical, hip hop etc) Sometimes I was compared to Cyd Charrise. I lived for singing, dancing and made it my life and career. Stevie was a huge part of my inspiration, on the stage and off. Her words and music, stories and truths are incredible to hear. She has shared her gift of life with us all.

As anyone, Stevie has had her many struggles. She taught me that it is okay not to be strong for all of the people all of the time – but that it is not a weakness, it is human. Besides having ethereal beauty, and a voice of no other it is her presence. I was lucky enough to see her in concert twice.

I have since had to quit working as a dancer, and stop working altogether. Four years ago in April, my life that I knew it stopped. I was diagnosed with the potentially fatal auto-immune disease Lupus (SLE). I became progressively worse quite fast. From owning the stage, I can barely walk now more than a few steps on my own, and the pain is incredible. I am from Canada but I spend the winters in San Diego due to the harsh Ottawa winters. Simple things are such a challenge. In the scary moments, I went to Stevie. Rhiannon, Gold Dust Woman, Rock a Little...her lyrics help me keep fighting in a fight that is is too easy to give in. I have lost all income, means, not on any social assistance – but I have Stevie's music, DVDs, books, history – as much as I can allow with what I can manage.

I would love the chance to meet Stevie, to thank her in person for the gifts she has and continues to give me. And maybe we can compare ballet stories...Thank you for this possible opportunity.

**************************************

If there is someone that is inspiring you, a thank you will go a very long way.

2011-03-15T20:47:00.000-04:00

I have always been a water baby. When I was little my apartment building had a pool, my favourite days were the ones where I'd go rollerskating, then swimming, drying off in the sun with my one pop I was allowed to have a year, Mountain Dew. I'd be well past wrinkly in the pool.

Being physical is very important to me, and as growing up as a dancer, pushing my limits, applied in every part of my life. I pushed hard, and I loved it.

Now I have had to relearn how to do most normal-people things, and as I've outlined the pain is really awful. However, I need to look at things differently, and be happy for what I can do not what I can't. It's how I looked at judging dance - I want to see what the dancers CAN do, not what they can't.

It's hard to put myself in that frame of mind, or think something other than I am a constant failure.

To look at it, I can't walk on my own without help from someone or something, and using the wheelchair is really hard to get my head around. However, I am doing physio as much as I can, and learning how to adapt it. Hell, 850 abs in there isn't so bad I suppose, right?

I've discovered the magic of water again. The pain is minimal (which is still high and bad) but I can do some of the physio in the pool. I can also do things that I haven't had the strength to do - I can do full splits again, I can arabesque, I can work my arms and pull my legs in fans - double circles aductor and abductors.

I'm so free in the water, I can do anything. It is wonderful to feel something that I thought I couldn't do again. Even if my shoulder blades look funny.

I'm a water goddess, and I love it. I still have the tenacity and driving spirit that I was born with.

2011-03-01T08:00:00.001-05:00

Someone you know has lupus. You know me. I can use a snuggle and hugs.

I'm going through some really terrible new things - again. It's getting very hard to keep my head up of the water. But you know me by know, I talk facts and my experience.

Today is Lupus Advocacy Day. I need to write more, but hence lupus is hindering even that right now, I hope that you can share, and spread the word.

This is still an unknown disease but it's very brutal. Please if you love us, spread the word, link to blogs like this one that details my daily struggle.

It is horrible, and not just a 'daily struggle'.

It is scary. I am so happy though to have people around me that are so supportive, and love and help in the bad - really really bad days, like the past while.

Someone you know has lupus. Please feel free to look at my past blogs, and my experience. Then possibly look at the others out there, since it is the disease of a million faces. We don't (often) look sick but we are. Very very sick.

A cuddle, hug, sharing, understanding means so much. Thank you for helping to share.

More info is here on today's advocacy day - http://bit.ly/ejDKJn

2011-02-10T06:18:00.000-05:00

Love Beats Hate

There is alot that I am dealing with for hate, but let's do love.

I love the weather in SoCal, I love that I feel so comfy here. I love that I have friends that are willing to take me on to get me out of winter in Canada.

I love my family and friends, yes, blood isn't thicker than water.

Love beats hate...

yes it does. Love needs to beat hate. Too many people enjoy being negative, perhaps for a reason to feel better about themselves? I know schoolyard games, but it continues with people in family and workplace. It is rediculous.

Yes I have lost people in my life due to my illness, maybe not but the excuses are always because I am sick. Scapegoat or cowards.

Thank you to those that continue to read, you prove that love beats hate.
Thank you for those that support me in your words and silly pctures.

Love Beats Hate. We need to spread this around.

Love. Beats. Hate. Just do it.

Not Giving In

2011-02-07T17:30:00.000-05:00

Many times I have heard that my decision for not going on medicine means that I am giving up. If I was truly giving up, I wouldn't be here today. I would not have fought to make it out of 2009.

The reason I am not on meds is many fold. I cannot tolerate anything, Nsaids, opiates, antibiotics even have disasterous effects on me. I tend to have severe reactions and side-effects. I cannot risk this, especially as I don't have any means or income to pay for these meds, so to put money that I do not have on something that will make me worse in effects is not something I am willing to do.

Despite that I am unable to drive or work, I have also heard 'why don't you just try it since you aren't doing anything now'. Thank you. I don't feel useless enough. Why not become a living zombie since I don't contribute a damn thing to society. Why prolong living like a vegetable and just wait for death?

I took so much pride in being independent, and I have such little of it left, I will not have my mind atrophy as my body is.

Would I love to be on meds so I can try to 'live'? Of course I do. My reasons and means don't allow for it. So I live as I am failing inside. It is such terrible pain that never lets up. Chronic means always there, and it is scary. Again if I am happy or laughing it doesn't mean I am without pain. This is the worst thing I have ever been through and I have always been a tough cookie. I try very hard not to complain, even in the worst of it. I cry, alot.

I am not willing to go through worse effects of meds that don't directly treat what I am dealing with. I can only hope the new med - first one for lupus will be approved soon, and then I will see if I can even take that, and figure out how to pay for it. So far it is over $20k a year - and no insurance nor income will make this difficult.

I am not giving up or giving in. I would not still be here if I did.

New normal?

2011-01-26T17:20:00.000-05:00

The elephants have been partying non-stop, playing shuffleboard on my chest with anvils, and as any good hardcore ravers, they have introduced electrical whips attacking my chest, feet, legs, and everywhere.

Monday was a scary day, and I've been mostly trying to stay calm and not allow panic attacks. I have felt legit in saying "What is happening now?". No, this isn't just a knee pain. This is severe all over pain in addition to the severe everyday pain.

I am not used to it, but if this is what will become my new normal, I suppose I need to. I am not sure what to do or how to deal with the latest onslaught of attacks.

Luckily I'm not dealing with it alone. I am still finding things to laugh about, although it hurts. I am a person that NEEDS to laugh and to feel somewhat normal sometimes. If I let myself think about this too much I will go into a dark place that I might not come out of.

Part of feeling normal and laughing and helps so much, is meeting people that are going through a similar hell. Not that my friends and family aren't doing everything they can for me, and for that I am ultimately happy and thankful for, but to be in the same room (that isn't a hospital) with people that know what it is like, is remarkable.

I would never wish this hell on anyone, not even a worst enemy (and I have a couple).

The thing about chronic illness is that it is chronic. I understand how hard that is to really grasp. It never will go away, I will never have a pain-free day, I will get worse and not better. I am not being alarmist, I am realistic. I need to be. Would I love to live with rose-coloured glasses, yes.

I just take one day at a time, one moment different from the next and try to accept what is happening. With people by my side, it makes it that much easier.

All I have is my love to give.

The Elephant Party

2011-01-18T17:33:00.000-05:00

My first week and a half in SoCal has been amazing, I haven't used the chair since I got here. This doesn't mean the pain is any better, but that I am a bit stronger. Some days I can do things, some days I can't do what I did before. This is the nature of this beast.

Except yesterday. Had a very rough day, epic pain and the worst costochondritis ( http://www.mayoclinic.com/health/costochondritis/DS00626 ) attack I have ever experienced. It is extreme sharp pain, I describe it as elephants sitting on my chest, and stabbing in between my ribs and crushing. It's very alarming, as anyone who goes through this will attest I'm sure.

Last night was crushing, ribs felt popping out through my skin, and the elephants were running many marathons, while the army of charlie horses were racing in my legs, my veins were pinching and releasing, my spine as usual wants to pop out.

It is also tough to deal with this emotionally. Usually I try to be very very strong, but it was overwhelming - and I had tears. This then turns into self-hate, and very dark thoughts.

It's all frightening.

I am so very lucky to have friends that are taking care of me, as caregivers, best of friends and who offer to help ride through it together. They help me to laugh, love and live, and through this darkness, I am the luckiest girl in the world to have such a strong circle of support, and I can't say thank you enough.

I know I wouldn't be here now without you that have kept me going.

Thank you for reading, sharing, supporting in this battle that is the hardest thing I have ever had to endure, every minute of every day.

Love and many many thank yous.

I still got it

2011-01-06T16:50:00.001-05:00

Why is it I always have adventures? I love that I do and perhaps since my Mom took me 'adventure walks' since I was but 3 years old, it's in my blood.

I am on a plane with about an hour to go to San Diego. My carry-on is filled with 3 books - all different, a few snacks and my nano which has 136 unlistened to podcasts despite the thousands of songs of which I'm blasting my earballs with right now.

My adventures of the day should have been at first in the airport - no line though so straight through security and customs who questioned why I was going for so long, why I was staying with friends and he should have laughed when my reason was "ditching winter".

I went right to the gate, but I was ansy. I couldn't read or listen to anything, my eyes darting everywhere to everyone. Why do people take babies to Disney when they have no other children with them?

The adventures started then. A harsh but nice woman rolled me to a new gate with no explanation - I had to ask, "The gate has changed due to the delay in the flight to Philly. We'll bring you up the stairs to the plane.

SHIT.

My eyes started to water despite my rockstar self. Then not just tears, but crying. Not Oprah-Ugly-Cry, but lots of tears. Another attendent brought me through an underground maze to an outside door where there was an aisle seat. I needed help to be transferred and strapped in so much. I had no coat or gloves. They brought me to the tarmac, and I cried again. Two large men lifted me up the stairs on a 1,2,3 lift for each step. I'm not a crier, why am I so weak? Pain, right. They were very kind and gentle though, all things considered. I can't complain at all, this was no Newark and no Continental. I managed to get to my seat with them just watching. It was a small commuter place with just 28 people and was smooth as glass.

Of course I was to be the last off the plane but there was no assistant despite the call for one 100 miles out. The pilot came to me an apologized. He was a kind man with a voice that was so comforting and very warm eyes. He offered to take me to my next gate which was a good 20 minute walk and another terminal but luckily I didn't have to redo security. He asked me what happened that I was in the chair. "Shit", he said. I was thankful for no pity, or various "I'm sorries". By now he was pushing me with one hand, so he could walk beside me. This was surprising and meant so much. He did say that "I didn't look sick, but great and positive". Thank you, I have my days for sure. Double checked the gate for me and had me use the washroom before he let me go.

Pilot Mike, thank you or taking life and mine so seriously, you are an angel.

Gate 14 had a bar. Not just a bar but one on the walkway with just 8 seats. I was able to get up on the stool and a pinot grigio.

I met a bartender that taught me the spanish word for shutup as she told a collegue. I met an oil mogul that is American but mostly works all over Canada. I met a nice guy coming from San Diego to Minneapolis and talked hockey. The new bartender was a blast and took great joy in asking everyone to flash....their I.D.s. I saw my gate boarding about an hour early, but it was to San Fransisco. The bartender left his post and checked the monitor for me, my gate was changed. I would have only had to go 8 steps, now to a gate 7 gates away. I haven't walked that much yet, let alone with the chair. He gently touched my shoulder and said "you can do this, I have faith in you." He stayed in the walkway to watch me make the new gate.

I was boarded right away...

The office is on the airplane TV, it's funnier without the sound.

(I made it safe and sound, I've had my first night in San Diego, and I feel okay, super sore and very tired, but all things considered, okay).

Thank you for the continued support, pushing that little button to the right and the comments and ongoing love. It is this that help me be able to get through the days and continue to have adventures. <3

2010-12-20T19:19:00.000-05:00

Christmas has always been magical my whole life. There is something peaceful and joyous about the time, special and happy. It's not about gifts, but it's about the time, basking in the lights of the tree, the music - the more rediculous and fun the better and Christmas Eve is my favourite over Christmas Day, possibly because that means it's almost over. Yes, I have mistletoe tattooed as a tramp stamp. I had to do that.

This year means so much more to me.

Last Christmas I don't remember at all. I do remember that I couldn't do anything for myself, I had to stop working so suddenly. It has been a year since I've worked, gone grocery shopping, checked my mail, cooked, drove my car. It was a very scary time. I remember feelings, but not events. If I think about it too much it really is very surreal.

I was not expected to make it, let alone to make it now, a full year later. My PT also didn't think I could make it when he first met me.

I've had to relearn how to do so much, eat, swallow, hold things, and there are still so much that I cannot do. I still can't drive, work, check my mail, but I can eat once or twice a day, I am continuing to adapt and learn how to adjust to do everything and everything. I am slowly getting stronger.

I'm not sure how I did this, how I came back to life, how I continue to fight, yes, I can't do much of anything, and the constant insane pain never goes away - but somehow, I keep waking up despite it all.

My love and sincere thank you goes out to my family that is taking such good care of me, and my friends south that take care of me for the winter. You have brought me back, you have made it be 'okay' even though I am so so sick. And a thank you to all my friends that are in my life everyday, make me laugh, be silly and have reason to not wilt away. Thank you for the donations, honestly that has been helping pay for what I can't manage to do medically.

As tough as this is, and it is daily hell, I have so much to be thankful for. Thank you all for being there, and making light out of the darkness.

I have no idea what will happen, but I hope as I continue to get stronger, and continue to keep fighting to stick around this joint as long as possible. I don't wish my past year on anyone.

I'm here to make new memories to make up for the scary ones last year.

Merry Christmas and happy holidays know matter what this season means to you. It means love to me.

I'm Broken, Yet Still Me.

2010-12-12T17:19:00.002-05:00

In the same topic as yesterday's post, the following are points that are helpful for those of us dealing with chronic illness. The points are sourced by Author Unknown, but I have seen it on many sites. I have decided to add my own points under, as I have in the previous post. As always, comments and thoughts are welcome. All I know is my experience.

1. Remember that being sick doesn't mean that person is not still a human being.

This I do struggle with often. I am so dependent on others that it is hard to think that I have an opinion, and I am guilty of not treating myself as someone that matters. Being out in the chair, people look at me, and I am still working on what kind of etiquette I am comfortable with. I appreciate being spoken to, but please try not to help by grabbing the chair unless you ask, it's just so much pain. Because I am in a chair doesn't equate to having no feeling in my body, it's quite the opposite. I do still have a working mind - usually - and yes sometimes I have to say "I need you to think for me". I'm still me even though I am broken.

2. Recognize the difference between "happy" and "healthy".
As mentioned in the last post, I'm not healthy, but I make efforts to try to do things, that make me happy. Laughing, music, friends, people that I care about and really care about me, that know me for me, and not just my illness. Many people I have lost, but others I am close to only have known me ill, but I'm still able to be happy. It doesn't take the pain away, but it helps my soul.

3. Understand that being able to stand up for ten minutes doesn't necessarily mean they can stand up for twenty minutes, or an hour.
This is something that was very hard to grasp. I was frustrated at being able to do something, then not. I cannot stand for 10 minutes consistently, and if I walk without holding onto the wall once, that is about my limit. I can stretch one day, but not after. Sometimes I have to sit while I brush my teeth, sometimes I have a hard time holding the toothbrush. There is no predictions to this, and it does require patience, including from myself. Sometimes I have forgotten how to turn on the car, others I couldn't figure out how to open the door. It's cruel, but it happens.

4. Repeat the above step substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything.

5. Realize that chronic pain is variable.

6. Know that "getting out and doing things" does not make the pain vanish and can often make it seriously worse.
Sadly true. However it helps my soul. I love when people offer to come over, it helps me be home, and is so kind for people to ask to come visit, or to help out a little bit. I love love love going out, but it's just not possible without a to-do. Going out other than to a doctor's or a hospital is wonderful and I love it, but also I have a fear or placing more burdens on people and it is taxing on the body. Luckily I have time that I have to to spend back home, in bed. It's a fine line and again hard to not just be able to go out, forget doing things.

7. Understand that if they say they have to sit down, lie down, stay in bed, or take these pills now, that probably means that they do have to do it right now, it can't be put off or forgotten just because they happen to be somewhere, or they're right in the middle of doing something.
When I hit the wall, I hit it hard. I get no warning, no migraine-like auras, it's horrible, then BOOM. Shutting down happens and I'm done. I tend to try to push it, and I know I shouldn't.

8. Don't suggest cures. I do appreciate the suggestions, but often I have done research and if I could try something I would. Usually if I haven't, there is already a reason in place, due to costs, side-effects, and I cannot take standard pharma meds. I have alot of limitations. Sure, if I could take 42 pills a day and manage 'fine', yes I probably would do so. There is a reason, please ask if I have heard of something, like the new 'miracle' Benlysta, but again, there is a reason why I can't. I'm not just being difficult.

9. Don't be put off if they seem touchy.
Pain hurts. Imagine how you feel with a headache or a flu, miserable right? I am not comparing my everyday pain to a headache or a flu, but it's the closest thing I can try to compare to. Sick, pain, miserable, frustrated...it's all serious. I do try to mask it, not bitch about it, the fact is - I am in a very severe part of the sickness, it's quite alot more advanced and happened very fast with me. Sometimes I can't get enough snuggling, sometimes, the slightest touch sends me to screaming and tears. I have no way of knowing. It just hurts - all the time. There is zero break, and zero times do I ever be pain free.

10. Be helpful.
And thank you for that. As I've said, I need help with very simple things. I want to do everything for myself, but I can't. It's very humbling and a loss of alot of dignity. Thank you for being patient and helpful, I cannot do the big deals like taking myself to the doctor. Any little bits of help, and that includes asking how I am REALLY doing, if you don't want to hear, don't ask. I am not one to bitch about it much. Yes it's overwhelming, and I want to help you, I want to help you as I used to do. I want to be independent, and more than anything, I don't want to leave it to others. I just can't.

Thank you as always, for reading, sharing and I hope there might be some gems in here to help. I'm still me, I'm just broken. It is hard to stay positive, I try my best. Feel free to ask me anything, it is a very hard and confusing struggle for everyone involved. Thank you for taking care, and being still kind to me. It helps me stay strong and try to fight.

11 Thoughts

2010-12-11T21:37:00.002-05:00

This flu is kicking my ass this month. I have been thinking alot about words or phrases that I find very hard to hear, and compiled a small list that are from some other chronicillness.com, bydls.com, thelupussite.com and to see if it's just me being dealing with extra epic pain, and all the troubles that comes with having a flu when you are immunocompromised. Perhaps you will agree, or you will have other ones that you hear that you wish to share in comments. I'm very blunt, so a warning if it is read harsh, I don't mean it to come across that way.

11. You’re never given more than you can handle.

Then I am one damn strong woman. That is like saying things happen for a reason, that there is something that I did to piss off the universe that much to be a good person, working very hard when I shouldn't and I'm even the kind of person that blocked traffic so a family of ducks could cross the road. Oh but I'm sick now because of some vendetta someone had against me so I deserve it.

10. You can’t be in that much pain.
My auto response to this is, 'how do you know how much pain I am in. Since when is this a competition?

9. Stop being lazy and get a job.
I'd love to, do you have the magical cure so I can? It makes me truly sick to see people work the system. This is why there are so many hoops to jump now for those of us legitimately ill. I've worked many jobs at once, and usually 6-7 days a week most of my life since I was 14. I took pride in my education both physically and academically, and by the way, no I am not on social assistance of any kind now, I have zero income and not on government support.

8. You just want attention.
And you want to be an asshole. Think about this, why would anyone wish this kind of life for themselves? To be in severe pain where nothing works, life every minute is a struggle. If I want attention I will paint myself blue and stand on a street corner downtown.

7. Your illness is caused by stress.
It is possible and probable that it was triggered by some kind of trauma, but we don't know. Thank you very much but I'm not going to be cured by rainbows and unicorns and waterfalls as much as they are pretty. Don't get me wrong, my purple unicorn pillow is very comforting, but I can't meditate the sickness away.

6. No pain…no gain!
Bullshit. Nuff said on this.

5. It’s all in your head.
Don't I wish? Again no amount of positive thought will help this one. Trust me I have a very good imagination but I never ever thought I would be like this.

4. If you just got out of the house…
You're telling me! I'm the girl that talks to anyone, anywhere, and even to things. Keeping a social butterfly down is hard work, but I can't make it to my elevators by myself, so going outside is something that I cannot do without a major production behind it.

3. You’re so lucky to get to stay in bed all day!

Yes I am. The risk of blood clots, the atrophying muscles, the low blood pressure, the pain of clothes, and even blankets and the odd stiff breeze. You got it sherlock!

2. Just pray harder.
I do thank those of you that keep me in your prayers, it does mean alot to me, however back to the what-have-I-done does not apply. I am not being punished because I perhaps have a different God than someone else. I am spritual, I have my own way of keeping people in my thoughts and pray in my own way. I don't judge (most) people on their religion, but I also keep in mind the 'so mote it be, ain't it harm none.' This should be something for everyone to do.

1. You LOOK so GOOD!

Thank you? No really, I do thank you. Because I may look well, I am really not, and I understand how hard that is to grasp. Also going back to laughing or being happy a little, I do try to be happy and positive when I can. Yes this pain is severe, overwhelming and over this year I have had to relearn how to do alot of basic things. The looks I get when I'm in the chair go from pity to almost excitement, but I don't have casts, I don't have any tells, except for the butterfly rash.

Thank you, I do want to still be pretty as my body is a monster inside.

New Year

2010-11-29T15:24:00.001-05:00

Thank you for the amazing birthday messages. I'm the luckiest girl in the world.

This birthday is very important to me. Not just because it is a special day, but it is a very mind blowing one.

When I was little, I never thought I would make it out of 36. I have no idea why or where this possibly started, but I was convinced that at this age I wouldn't get past.

It's now 3 hours past, and I am 37. I made it.

I thought many times this past year my prophecy would ring true. In the hospital last Christmas, I thought that was it, made my peace and was ready to face the end, if that is what would take me.

Somehow, I fought. I don't know how I do this, but I just do.

This birthday is epic. I made it.

I thank you all for helping me fight, I surely wouldn't be here otherwise. This is know is true.

I've been terrified, which doesn't mean giving up or giving in. It means that I am just a person.

Everything, as little as it is, is a new accomplishment. This year, I do feel as if I was having to relearn how to do anything - eat, breathe, walk the little that I do, fight for what is right and what I won't put up with.

I might be coming back to me.

I thank you for the love, the support, treating me for who I am, not what I was, and feeling sorry, or leaving me. People I loved have left me, and that is okay. Perhaps I should come with a warning label now.

Love me or leave me. Thank you for loving me. This birthday is more than a birthday.

I made it.

Getting Stronger, Inside and Out

2010-11-26T17:42:00.004-05:00

A week ago I was able to start physio. This has been possibly the best breakthrough I have had to date.

I first met my physiotherapist when I first got back, and there was nothing he could do for me, as I had no strength to stand, let alone open the fridge door, turn on faucets, and barely lift the toilet seat lid.

I've gained some weight, I can function very very very basically on my own, just at home except for cooking, yet opening my front door is still a bit of a challenge. Once I leave the apartment, I need help with everything.

My PT started with some basic stretches, and he remarked at how flexible I still am, despite the pain. He started me on a plan, with reps and to progress and increase them. I exceeded this on the first day.

I have been doing these, with increasing reps - and adding resistance and including some core work - just abdominals so far. Every day, and part of my exercise is to bring my laptop to the living room, where I can do my physio on the couch.

Yesterday was my second visit, as he will be seeing me every week. He was again pleased with my progress, and with my ab work, and gave the okay to continue, I am attempting to increase this by 25 each day. He even said that I could gain 20 more pounds and be perfectly in range.

The other day, I noticed my hip popped out, not a dislocation, as I'd be screaming, no doubt, but it does hurt and my knees are out of alignment, starting from my hip. It is burning and sharp, but in comparison to my usual pain, it's nothing really. I have a twisted wrist, but that is from just trying to sit up in bed, not physio related.

My new section is to increase what I have, and including strengthening and adding core now, even for my back, but I can still do that lying prone, as I can't lie on my front at all still.

It is hard not to compare what I used to be able to do as a dancer, but if I think and compare from day to day, I am thrilled with how I am doing. It feels so good to move, and it is still limited, but I'm happy that I am able to lie down, pull one leg up, and my knee comes to my nose, like a reverse split. That is a different pain - and one that is welcome.

This is so exciting. I finally feel like I am accomplishing something real, even though to normal people it is probably nothing. I have something to look forward to everyday, and everyday I am feeling myself change.

I even can walk down my hallway without needing to hold on to the wall half the time. I still need all the aids from my Occupational Therapist in the apartment, and I still can't stand in the shower, or cook, but it's the little things, that are really most important now.

Yes I have lost so much of my life, and this is new life as I know it. And for this, I am thankful of the support and I am proud that I still have that drive that I used to.

Perhaps I really am still a fighter...

Love Beats Hate

2010-11-17T21:04:00.000-05:00

Love and hate are powerful things. Seems like those that hate, get ahead. I don't understand why bad things happen to good people and the haters keep going.

It's too bad we need a 'day' to express why love beats hate, but it is important to remember why love is better.

Most people want to love and be love. I cannot fathom those that live and thrive on negativity, especially over the small things. Stupid drivers, stupid people working at drive throughs, stupid machine made coffee too hot, and on and on.

I've always been the 'nice' girl. While I don't have long left here, it is becoming more apparent that I will not put up with hate. I am usually patient and put up with alot, but I can't give in and be nice to hate. Cheesy yes, but life is too short to live that way.

The kindness and love that I surround myself with, surprises me everyday. I will not tolerate anything less. Hate tends to make the world go round.

It needs to be love. We all can learn to live with love and kindness, don't hate the haters, just don't play the game.

Love not just for today, but for always. Reach out a little more, let this jaded world be, and embrace love.

Love beats hate, lets keep it going. Who's with me?

Thank you to those that have reached out to me, loved me sickness and health.

Really does mean the world.

Love love love.

The HorribleNoGoodVeryBad Tests

2010-11-10T19:23:00.002-05:00

When nurses, techs, doctors are honest when things could be hard, I much appreciate it. I would much rather honesty then sugar coating.

As was the case with today's tests. I woke up at stupid o'thirty and went in for Arterial Brachial Pressure and Peripheral Arterial, the second part to last week's DVT. I knew from research and talking to medical professionals this would be a tough day.

I wore the super-fly paper dress, and again, remembered real underwear. My technician was a bit brisk, but she became very kind and explained everything as we went. She told me it was tough, and will take over an hour.

She started by putting blood pressure cuffs on my arms and legs, and attached a mic and wand to each cuff, and started the tests, lots of squeezing and pressure, and release, repeat. The machine recording the the test was so loud, and quite disconcerting. And it hurt. I try to think I am strong, but when air hurts on a good day, this sent me flying. I concentrated on trying to breathe properly, and let her do what she needed to do.

She took off the cuffs once she asked me if I prefered, normally they keep the cuffs on the entire time, but I was thankful that she took them all off for the remainder of the time. Similar to the DVT tests, she followed my arteries from my groin all the way to my calfs, searching for my arteries and anything abnormal. This hurt. The pushing by my knees and on down was very tough. When the machine stopped making noises, I tried to not worry what that meant, as the bed was raised and lowered the entire time. She had trouble finding my lower arteries, but she said that was because I was so tiny, so everything was tiny. She just said that was how I was made..it was kind of endearing when she smiled at me so warmly.

With a towel she helped me get the gel off, and to sit up. I was terribly dizzy. Good news is there are no evidence of clots, however the possibility is that my arteries and veins are seizing. She also mentioned the potential of MS on top. I needed help to get dressed, and home to sleep.

I am currently in so much more pain, than the usual horrible. I need help with everything. This is my body in some kind of shock after being in some kind of trauma.

This may take weeks to get over. Thank you everyone that sent me love and well wishes today, it helped to try to stay strong to get through it all.

Someone you love and know has lupus, and it is made better by love and support, to get through every day.

Strong Butterfly

2010-11-01T17:42:00.000-04:00

Today was the DVT test, woke up early and despite my fears and 'what-if's' and being awake in the real early morning, I wasn't even cranky.

Being super packed the night before helped, and of course my favourite red hoodie and matching flannel PJ pants, like hell was I going to wear real clothes out. Besides, my transfer chair is red too. I tried my old hiphop shoes too, and being split soles, they were such a help. Didn't take the pain away, but I had more control and felt somewhat good (in comparison).

Checked in to the hospital 30 minutes before the test was scheduled, and as promised I bypassed triage completely. I was then taken to the waiting area for the testing and imaging units, and I was grateful that it was small, and curtained areas.

My tech nurse was quite nice, but she started by saying she couldn't do my tests. I felt my eyes start to well up and felt a bit of hopelessness come up. I asked her if we could do the DVT at all possible, because I didn't know what else to do. She agreed to that, but clarified the other two tests on the requisition were not able to be done there. Such a relief, as those tests are booked elsewhere on November 10th.

I was decked out under my PJ's in some of my old dance clothes which helped so I could stay a bit warm and still not be in full undies, since I don't know how much is shown to the world.

She gelled up my left groin first and asked me about pain, since she had to press quite hard with alot of force. I told her that I might cry and gripped the bed rail. I think I bit off most of my chapstick during the test.

The pain was tolerable till she got to my knees, and pushed hard underneath and with her hand pushed down on my kneecap, and followed the arteries down to my achillies. This was the toughest and searing pain on top of my already searing pain.

Still no real tears. She repeated the same on my right leg, I continued to bite my lip hard, grip the bed rail and tried as much as I could not to jump.

The final part of the test was sitting up with my legs hanging off the edge, one hip more in front than the other. As soon as she was done, she helped me to get the gel off, and she said I did so great. I really appreciated that so much.

She told me the results would be to my doctor in a week, and I took a huge breath. I have been terrified of the worst. She said quickly that there was no sign of any clots or PE. However, I'm not supposed to know this until I go to my doctor for the details. So nothing conclusive as to what it is, but at least one more thing that it isn't.

This is when the tears started. I was shaking, but not Oprah-Ugly-Cry.

Fell right into bed when I got home, and slept for a while, had a visitor and slept some more. I expect this will take days to get over, as my knees are now twisted and my muscles are screaming, and somehow my ribs feel even more popped out than usual.

I'm relieved, and this is over for now. The next major tests are still coming, and this will be another tough and longer ones.

Again, thank you for sending the love and support, and to my friends for updated and being my voice when I couldn't do it myself.

Loves, here's to no clots. Time for a glass of wine, it is a blood thinner after all.

Which do you want..?

2010-10-28T16:52:00.004-04:00

Good news or bad news first?

Tuesday I saw my GP and let me just say how lucky I am to have found her.
She is as far as I can tell, wonderful, thorough and is thinking outside the box.

Good news - yes, it is in fact lupus. (duh) Still a struggle to get new doctors on board, you hear this Dr. House?

Bad news - it's also possibly MS on top of lupus, fibro and RA. Not much a surprise, since these autoimmune monsters travel in packs.

She's upped my lbp (little blue pill) which is Amitriptyline from 10 mgs to 25 mgs /night. She agreed with me that the other pills other doctors keep trying to push on me is too dangerous for me - namely the MTX and the plaquinel. There is a possibility she will put me on Celebrex, but she offered to try 3 ibprofins a day, however I do have an allergy or intolerance to it. So less of many evils perhaps.

The real heavy news now.

She has ordered new tests for me - Peripheral Arterial and Ankle Brachial Pressure tests, which I will have at the same centre that I had the radiation.

The third test is the scary one - the DVT on both legs. This cannot be done at the same time as the other, and is actually urgent. The centre says that I have to call at 7:30 am everyday to see if they can take me - however transportation is not so easy since I am so dependant on others, and they of course work. Public transportation is not an option.

This centre told me that if I can't get in, to please go the the ER - asap.
I have called my GP again and am waiting for anything she can advise me to do, with the many challenges that I have.

Since I can't drive myself, I do not have my car anymore. It's so hard to depend on people, and I am so grateful for the time they do take off to help me.

My feet do turn blue and go from blue grey to red with white spots. I know my blood is messed up - since I am not producing many of my own cells, and since I had the transfusion.

There is something severe that is wrong, but this urgent, and telling me I have 48 hours to get tested, with the other voice at the end of the phone saying she begs me to to the ER asap, is scary.

I'm very overwhelmed and sicker than even I thought. And that is not so good at all.

Will try to update as I know things, currently just a waiting game right now. Waiting means thoughts in my head, and this also means I am beating myself up over it.

Thank you for your wishes, thoughts and words. Every little bit means so much, and is treasured.

Today is an Anniversary...

2010-10-23T21:32:00.000-04:00

One year ago last April was the start of my downturn. One year ago today, was the start of my demise.

I woke up on the elevator floor, with a commotion around me. The elevator was open, and held on the ground floor. People were on the phone, and I heard sirens. That was an ambulance that was coming for me.

I remember getting dressed for work, I had a can of soup in my pocket of a new red jacket. I was feeling so weak, as I hadn't kept any food down since April, and still had my period. I got to the elevator, but don't recall getting in it. Thankfully I did, and my neighbours said I crumpled right away like an accordian.

I woke up with the neighbour that I suppose caught me from behind, and luckily I didn't hit my head on the floor. My landlord was on the phone, and not sure what happened, but I do recall the feeling as I was going down. It was somewhat gentle, and just a 'I'm shutting down' as there was no fight in me to do anything otherwise.

The paramedics came, and spoke to me in the elevator before trying to move me. They asked me the standard questions, what year is this, what day, my name. He picked me up, and convinced me to just check my vitals in the bus. My blood sugar was perfect, my blood pressure was okay, but still I was trying to convince them to let me go to work.

My landlord asked what she could do, and she called work to say I wasn't going in, as much as I kept trying to say I was fine, and had to go. She was such an angel. I was able to call my mom, who made it to me in under 10 minutes. I think she called my husband, but I'm not entirely sure. I was able to text friends, that helped tell our circle of friends for me what was happening.

I accepted that I wouldn't go to work, but wanted to go upstairs, and just sleep. They hooked me up to an EKG. I put up such a fight they called their EMT supervisor of the entire city. I'm not sure what made me give in, but they let me pick the hospital to go to.

I was put right through triage, and in the ICU right away, no waiting for a bed at all. Hooked up to wires, and sounds and beeping and IVs, and I was so damn tired. And cold. The best part about this hospital is the warm blankets that were there, somehow my husband knew (his family works at this hospital which is why I chose to go there) and kept giving me new blankets once they got to room temperature.

I had some visitors, but I was still in just curtains. I eventually was given some cheese and juice, which I think stayed down.

I was scared. I tried to make jokes and remain alert, but I am not sure if I slept at all. I do feel bad still that I kept mom and the man away from work, and that I had to have someone work for me.

I was finally released, not sure after how many hours. Not even sure when I made it back to work, if it was a few days or a week.

I know I should have stopped working in August.

One good thing, I am so grateful for is that I blacked out at home, I wasn't driving. I can't even fathom that horror if I was behind the wheel and if I hurt somebody.

I've been haunted by this day ever since. I made it - an entire year later, and I am very ill, and much has changed, but it could have been so much worse.

I am thankful for the kindness of strangers, and I can't imagine if I blacked out inside the apartment, or in the hallway, where I was alone. Not sure what could have happened if someone wasn't there right away.

One year ago today, was the start of my demise. I continued to get much worse.

One year later, I am still here.

It is still lupus awareness month, please help to get the word out. Thank you.

Slipping Again

2010-10-19T16:08:00.000-04:00

I am a really a very patient patient. I took a week off of worrying due to Thanksgiving, where I had some dearest friends travel far and wide to spend here. It was great, and of course they were wonderful in understanding what I can and can't do. It was so special and very small compared to other years, but I just couldn't do anything on a large scale and organize a whole long weekend of events and things. There were a few things that I couldn't do, but that was okay. Just having them here and close was amazing.

They took me to the neighbourhood mall, where I haven't been in a year. It was very hard, but I did feel safe, although I don't want to do it anytime soon. I was in the transfer chair, and feeling shy and scared; sore and vunerable. I did see some people that were familiar, but didn't know them enough to chat. It was those kind of looks, the confused, the wonder, the pity. I damn hate this pity. I'm STILL me.

The hardest thing about having visitors is the goodbyes, and I'm still having a hard time with it, even though I will be back to California in the new year on my winter escape.

In preparations for the trip, I've been calling my doctors to make appointments to refill my prescriptions (that don't do anything but I can't just stop them) and to find any latest results.

The latest and most important ones that I have been waiting for is the radiation. The doctors don't have them, as of today still. This is how many weeks now?

I'm trying to be strong, and nice, but I'm scared of what they will say, or have me go through again to get it done if they got lost. I'm scared of falling through the cracks - again.

Falling through the cracks means that I'm not good enough for care, I'm a lost case and either they don't know what to do with me, it's also they don't care to.

I'm very confused, and the pain is also in new places, new intensities, and it's frightening and defeating. I need help and I don't know what to do.

Is my only option hospice? No thanks, I'm not ready for that. That is giving up. However, I need care, I am stronger, but I am not able to jump back into normal life.

My heart is breaking all over the place.

Thank you to friends, family, readers and listeners. October is still Lupus Awareness Month. I implore you to help this awareness not fall through the cracks and be overshadowed. We need awareness out there. Someone you love has Lupus, and needs help.

Invisible Again

2010-10-06T22:06:00.003-04:00

As not a very political person, I have always taken my right to vote seriously. There has only been on time I haven’t voted in an election since I turned 18, and that was the fault of the elections that didn’t add my new address info when I submitted it.

Even though I usually find most of the names on the ballot some lesser of a handful of evils, it is my right, and I am lucky to be living in a time and country where it is so.

We are heading into a municipal election shortly. I called the elections office today since my abilities and accessibility has obviously changed. I was told there are new polling stations to help ‘the disabled’. Which is lovely, but doesn’t fit me, as it’s mostly for visually and/or hearing impaired.

I inquired about a mail-in ballot, but that is not an option. My only option is to vote by proxy. In order to do this, I have to sign and fill out 5 pages of forms, in the election headquarters, in front of the City Clerk. (which is only open during regular business hours) I again asked – very politely – is there not anything else that I can do, I am housebound and bedridden. They offered to mail the forms, but I still have to get my little butt clear to the other end of the city to arrange for the proxy.

I am not a shit disturber, really. This does anger me, and I am quite hurt by this. This is larger than just missing a vote day. This says leaps and bounds about – dare I say – the D word?

I do feel like this is discriminating. I cannot be the only person in such a situation, I cannot leave my apartment without depending on others, and I cannot meet these terms. Why is there not a mail-in ballot? Granted I can’t get out to a mailbox either. Why is there not anything else. I called twice. Spoke with two people, and this was the same result.

I’m hurt, and it is another slam in my face. Well done elections. Nice job politicians. No wonder you don’t hear from people like me or represent us, you don’t hear from us because you can’t.

I should probably call my neighbourhood counsellor, but sometimes I’m just tired of everything being a fight.

Thank you for keeping us invisible.

It’s not okay.

2010-10-02T17:16:00.002-04:00

I made it through a week on my own, and I’m still kickin’. I was under strict orders to not use the stove, oven, toasters, heavy machinery, forklifts, knives, elevators.
I still ate, about twice a day and a snack if I felt like I needed it. I walked alot in the apartment, and even tried to make my 100 crunches a day. It’s a far cry from what I used to do, but right now, walking by myself for a few steps is a major accomplishment.

My feet are not great, continuously going from blue to red with white perfect spots. The spots are crawling up towards my knees. I am waiting on the results of the radiation, and before snow comes I have to make another appointment with the doctors. I am getting very tired of hearing ‘I don’t know’, or just the blank looks. I am broken and I need to be fixed. This is not new. It’s just getting very old and tired. It’s that daily fight, and yes sometimes, I want to sleep it away. I don’t see that as giving up, just needing a break. It is quite overwhelming.

October is Lupus Awareness Month in the United States. There are so many misconceptions about this disease, and it does affect everybody differently. I happen to be very bad. However, one such misconception that I heard on a talk radio show based in the States was that it all all diet. Yes, a good diet is good for everyone, and yes it helps. However, claiming – and yes – I am taking this personally right now – that I am sick and got sick because of weight and inactivity and poor food is utter bullshit. When I got sick, I was dancing and teaching everyday. By the way, the statement that ‘those who can’t do, teach’ is also utter bullshit. I ate very well, I was 130 lbs of solid muscle, I cooked for myself and worked everyday, a couple of jobs. I was damn good. So if nothing else, I am proof of this being bullshit. Lazy was not in my vocabulary or my repertoire. So talk that I’m anorexic or lazy, and the like, is angering, sad, and it’s not okay. Yes I am tinier, yes I am so tired, yes I cannot do things that I could a simple as they are, but it’s so much more than that, and assumptions are not okay.

For this month, if you care to give anything, please help the awareness of this horrible disease. There are many that are horrible, which is why it is called dis-ease. As a very close and dear friend says, “sometimes sick JUST HAPPENS”. Thank you for hearing me out. I know many listen, but still others don’t hear.
As an aside, thank you for your generosity in time, in thoughts, and pushing shiny buttons such as the one on the right. Thank you, it is more than I can express, and without you, I wouldn’t be here.
I thank you for helping to make some parts okay.

My love to you.

Truly the Best Medicine.

2010-09-16T22:30:00.001-04:00

I met my 4 month old niece this week. This visit was so very special. My mom and I had my cousin and her new baby come from Calgary. What was unintentional, but was amazing was that yesterday, my grandmother would have been 100 years old. I was lucky enough to share that day with women of 3 generations that I am so close to. We share a same sense of humour, (if you know me, imagine three of us in the same room), same eyes, same hands. It's amazingly special.

The baby and I got along very well, and she also seemed to have an instinct to be gentle with me, she had some strength in those wee legs, fingers and was wiggly, but as I was holding her, and we had some pretty good conversations, she was wonderful. I do believe in strong connections, no matter what age. As my psychic witch friend would be surprised to hear, the baby is a Taurus and I am a Sagittarius.

This was the first time I had seen my cousin since I became so ill. I know it was a shock - as it is with everybody that knew me before. What was so incredible, was she still saw me as me. I am a person with this, I am not the illness. It was no questions - or guilt, or anything such as, 'why can't you...why don't you...have you tried...', it was unconditional and love, like no time ever went by.

This is so valuable and special, and wonderful to me. I am very lucky, as much as people are and have faded away, I have caregivers - those are the ones that are checking in, that physically and literally hold me up, are there when I can't do anything on my own, but also there to watch and let me try to manage small things, and hold me when it is too much.

So to those that have been there, that are there, in your own ways, I thank you, and I love you. Thank you for making me laugh, letting me cry, letting me cry because I am upset about crying, feeding and keeping me going with meds, and foods. Asking me the hard questions, I know is difficult and sometimes I don't know what to just say either.

Come to me, ask me, because during this week - Invisible Illness Awareness Week, is a time that we need to get the awareness out to the masses. This is something so misunderstood, and often - people assume and won't come out of that. That is okay. It is hard to cope with, and hard to deal with. I understand.

Thank you for being there, for reaching out. It makes a world of difference, and it means the world to me. With how much I have lost, I have gained so much. Thank you for making me laugh, and being 'okay' when I can't.

Thank you, so so much. It is not for granted, but cherished. I thank you.

Really. THIS is the best medicine.

Thank you, and loves.

30 Things - Invisible Illness Week

2010-09-14T02:11:00.001-04:00

30 Things You May Not Know

1. The illnesses I live with are: Lupus, Rheumatoid Arthritis and Fibromyalgia

2. I was diagnosed with it in the year: Lupus - 2007, Fibromyalgia, 2008, RA - 1980

3. But I had symptoms since: Birth.

4. The biggest adjustment I’ve had to make is: Stopping working and what surrounds that on a dime.

5. Most people assume: That it can't be as serious as it is.

6. The hardest part about mornings are: Going to sleep. I do not wake up or keep 'normal people' hours.

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: My laptop. It is my lifeline.

9. The hardest part about nights are: Getting to sleep. Nighttime is my time, I feel somewhat functional, at peace and happy.

10. What do you take? I should take more than I do. It does vary per day. At least 10 pills/vitamins/day.

11. Regarding alternative treatments I: am very open to. I prefer the options of alternatives than to the 'big pharma'.

12. If I had to choose between an invisible illness or visible I would choose: Neither? Both have the severity and challenges to live with, sometimes overlapping each other.

13. Regarding working and career: I prided myself on my career, my work, my education and training that led me to do what I chose to do with the opportunities that I had.

14. People would be surprised to know: I am very scared and I get angry.

15. The hardest thing to accept about my new reality has been: The struggle to find medical professionals that I trust, that I feel my care is taken seriously and the length of time - years this has been.

16. Something I never thought I could do with my illness that I did was: Fight to come back when I was at the zero hour.

17. The commercials about my illness: Are a joke. If I feel suddenly well enough to get on my knees I sure as hell am not going to start a garden.

18. Something I really miss doing since I was diagnosed is: Dance, teaching.

19. It was really hard to have to give up: Driving.

20. A new hobby I have taken up since my diagnosis is: Writing this blog!

21. If I could have one day of feeling normal again I would: Throw a party and dance on the speakers. And noone will stop me, but including everyone to dance with me.

22. My illness has taught me: Accepting loss.of independence does not mean a loss of self.

23. Want to know a secret? One thing people say that gets under my skin is: "What is wrong NOW, you LOOK fine". (Said to me when I was first in the wheelchair)

24. But I love it when people: Include me, help me with the little things, make me laugh, accept me for me.

25. My favorite motto, scripture, quote that gets me through tough times is: "She's home now, She's gone far beyond that song, Rock and Roll Ballerina, where else would she go" - Rock a Little - Stevie Nicks

26. When someone is diagnosed I’d like to tell them: It's going to take a long time, new hells will happen. be your own advocate, stand strong with doctors.

27. Something that has surprised me about living with an illness is: The support from people that have stuck with me thick and thin.

28. The nicest thing someone did for me when I wasn’t feeling well was: I have been so ill where I could not do ANYTHING for myself, and to help, no questions asked, and no guilt.

29. I’m involved with Invisible Illness Week because: AWARENESS is needed for these illnesses that are severe, take lives, and take our lives as we watch it happen. We need our voices in the sea of many illness because these are so misunderstood.

30. The fact that you read this list makes me feel: Like it's okay to talk about, that I am still me, not defined by the illnesses, nor the limitations.

Thank you for supporting and taking the time. It is much appreciated and loved.

Thank you, so so much.

I'm Glowing!

2010-08-31T23:42:00.000-04:00

Nuclear Day was yesterday. Luckily I didn't have to go to the hospital this time, and it was overall as positive that a radiation day could be. At least in comparison of the last experience that I had.

I was injected first, and was my first ever injection lying down. For some reason that was significant to me, but I still couldn't watch it. I am okay with needles for the most part, but as long as I don't see it or know too much about what is exactly happening. There were some preliminary tests done right after as I was in the machine, but again, fairly okay.

I was released and to return a couple of hours later, so was able to go out in the sunshine (sort of) and get a quick bite and had to drink alot in the in between. In the end, took a bit of a long drive to see the river locks that we couldn't get to, a new bridge that wasn't built yet, all to pass the time. I felt loopy and a bit high at times.

Feeling very anxious about the next part once I got back to the centre, and they were late taking me in. Popped up on the bed, and I was then strapped in, by my feet and my arms.

The last time in the hospital, the bed was much bigger, I was strapped in from my forehead, forearms, wrists, hips and feet, with my arms in a trough on either side. The technician was nice but cold, and didn't communicate anything at all, and left the room during the entire time. The room was full of windows, and to the hallways also.

This time, my room was much smaller, more private, and the technicians stayed and talked to us the entire time. Once the 'business' talk got over, it was much laughter, many encouraging words as to how I was holding up, and what was going on. Also, once the machine moved past where I was strapped in, she undid them. It was a nice break.

Once it was done, I was dizzy, loopy, nauseus and that was okay. It wasn't horrible, just how I was feeling was awful. The actual procedure was what it was, not great, but much better than my first one.

Bedside manner, and making one feel like a normal person makes it so so much better. I've had my share of poor bedside manner, and these were truly angels.

Laughter really is something that is so important. If not a long-term best medicine, it is at the time.

I get sarcastic and quippy when I get nervous. It's very nice to have people can understand and put up with me.

Thank you everyone for the love and messaged, and for the lovely technicians all who helped to make a horrible day, tolerable.

I get to be nauseus which is okay, and the entertainment that I get to see what funky colours I will be peeing for a few days. ;)

Thank you. Much love.

Team Nuclear

2010-08-25T16:58:00.001-04:00

Follow up specialist appointments are always scary. So when it is good news, I'm not sure how to take it, or if I am understanding correctly. I'm sure it's too good to be true.

Somehow, my blood levels are 'over normal' - just slightly but over twice the amount in December.

My organs look okay, and my other tests, the ANA's are the bitch. They are always so confusing, but also have two months of being slightly negative. Which is confusing.

I asked what was happening, and he didn't have an answer. I asked him about my feet - that besides the extreme pain - they go from blue to white to red with white spots. I asked him about the twitchies, and told him of the new suppliments I was taking and what or how much he reccommends.

He said "Well, you tell me then". Sigh. He did match my GP's recommendation of two LBP's at night, which I suppose is not so bad in the scheme of things - it's not chemo, and it's not other opiates.

This disease is one where you will never get a concrete answer, and a positive can be negative and a negative can be positive. It's a fucked up brat, that takes alot to fight it, physically but mentally also.

It's an invisible disease, which means double the fight. No scars, nothing tangible on the outside - just a body tired of trying to fight itself. He is very concerned with the fibromyalgia still. However, no real plan as of yet.

I'm going nuclear on Monday. I've had radiation two years ago, and I said I wouldn't want to do it again. Who am I to say no to the lupus specialist? It wasn't an option. My option was to go to the hospital or to a satellite centre - I chose the satellite centre.

I went to the hospital first, and that was when I was able to walk with pain, but I want a smaller place, a reasonable parking lot and it is staffed by hospital techs and nurses.

I have the experience so at the very least I know what to expect. I promise though, I won't tweet the funky colours that will be peed out eventually.

And if I have to take out my nose piercing, I will be pissed. ;)

This is a song that was shared by a dear friend, and is my theme of the week. http://www.youtube.com/watch?v=s87FG6AQQAw&feature=search

Thank you for pressing the shiny button on the right, and for sharing this blog. There are quite alot that it helps so much with, from parking, forms, to the day to day expenses that are required. That you think enough to share is humbling, and thoughtful and I thank you from the bottom of my toes. Thank you.

Where did I go?

2010-08-18T23:46:00.000-04:00

A bit ago tonight, I was in bed, watching So You Think You Can Dance Canada and somehow, I very quickly got very lost, and very confused.
It didn't last for long, but it was frightening enough. My pain is high, my sleep is messed, nothing new here, just the intensity. I've been twitchy and been fighting an anxiety attack for hours.

I've had a migraine for a few days, again, nothing new, but I got lost. I got lost, in my own bed. I was told that I just disappeared, and I remember hearing 'where did you go'. I don't know where I went.

I don't know.

Last August, I started my downturn. This was the time where I had chemical burns on my both my hands from the topical analgesic. I was still not eating, and iron was very low.

Standing at the wedding, I started to feel like I was going to pass out, I thought it was the sun - as I haven't been in the sun much at all since I got diagnosed. It was all the strength I could do to stay up, like hell, was I going to pass out at the wedding. Like hell.

That was the first notice something started going very very wrong.

I was too damn strong. I started the black outs, and usually I was caught. I had to walk down 10 flights of stairs one day, on my way to work, this is the first time I was found by my neighbours. I went back to the apartment, begged them to not call the paramedics.

The blackouts continued. I couldn't park at work in the parking lot, or in the driveway, I had to park outside on the street. I often couldn't get out of the car right away, and fought blacking out right out front of the doors.

I was living off freezies to at least keep myself hydrated.

October 23rd, 2009 I blacked out again, in the elevator at home. Luckily there were two neighbours with me, and woke up to being on the ground, on the ground floor, with people around and the paramedics. They brought me into the bus, and again, begged them not to take me to the ER. I lost that fight, and was in the ER shortly after.

Since then, they got increasingly worse, and more frequent. I am so very very lucky that nothing happened when I was driving. I kept pushing, too hard to keep normal, working, running errands - luckily for me - strangers were very kind to me. Almost everyday that I was out on my own, I suppose I was so visibly in distress that strangers stopped to help me.

Losing where I was for a bit tonight was enough of a scare. It doesn't feel like a black out, it feels like I dissapeared. Nothing tangible.

I need to sleep. I want to sleep, for a while.

I love August, but I am terrified.

I'm fighting everyday, even though I want to sleep for a few days at once. This is not me. I don't know where I went.

I'm so tired.

Of so much.

I'm getting afraid.

Of so much.

August 14th.

2010-08-14T21:40:00.000-04:00

One year ago today I had the pleasure of witnessing two of my dearest friends seal their love in the most beautiful handfasting ceremony.

I was touched to be asked to stand as Maid of Honour for Kata, as our friend Rick stood for Will as his Best Man.

This day was perfect, it was gentle, and peaceful - beautiful and calm, and seeing Kata and Will and surrounded by their family - and seeing more friends who have became my family over the past years was magical.

My husband had other weddings that weekend, but I was luckily enough that we made the drive to make it - because in reality come hell or highwater I was not going to miss this day.

This day is also shared by more dearest friends, my friends - Daniel and Victoria who opened their home to me in California, and took care of me while I couldn't be in Canada. To share your anniversary is a most giving gift.

Something so beautiful to see people I love more than my life, share their love on the same day.

Today also holds a bit of an anniversary for me, as a day where things started the quick downslide of my health.

I though, am the lucky one. I stood for Kata and Will, as I knew them perhaps slightly before they knew each other. I saw their story start, and evolve, as it will all continue to do so.

Kata and Will - congratulations, the gift you gave me of being a part of your lives and your wedding is one of the most beautiful ones I have ever had, I treasure you as I treasure you today.

Daniel and Victoria, congratulations, the gift you gave me of opening your hearts and your home to me is one of the most beautiful ones I have ever had, and I will always treasure you.

I thank you - for being you, for including me in your lives. I will always and forever hold you all close to me.

Thank you for standing with me.

Thank you all that support and read my story, you also are standing with me, and you are giving me the strength to wake up the next day, and the next.

August 14th, is a day that is very special for me, forever.

Radio Chaos vs Radio Silence

2010-08-12T03:40:00.001-04:00

Part of the allure of driving is the control you have over something that is so big, and powerful. Part of the fear of flying is that you are not driving.

My OT visited again last week, and she is still wonderful. She wrote out for me at no charge the request for the Ministry of Transport Canada my disabled parking pass. In other words, my crip tags are ready to go.

I saw the new GP the next day, and more of my medical mystery indeed.
My mom took me to this appointment, and was her first time taking me anywhere by herself with me in the wheelchair.

I had no choice but to walk, out of my apartment, into the elevators, down the ramp to her car, as she pushed the empty chair.

Brave girl I am, I didn't shed a tear, but I wanted to. The power went out in the building due to a storm, and by law, I am still a certified first responder. It was very hard to suppress my instincts and my adrenaline, I was for the first time a bystander, even though in a power outage everything regarding the paramedics went as protocol.

What did we find out at this appointment? My levels are so wacked, they might be almost good. Except for the ANA, which is always the bugger. Once diagnosed, it remains as a little shit, playing tricks and again with the medical mystery.

My GP gave me 8 samples of Naprelan. I don't like it. It's an anti-inflam, which I said I would (despite my hesitations) take the full 8 pills for a week.

I've been waking up confused, and angry and in more intense pain, no rhyme nor predictablility to it.

The other morning, I woke up already in hysterics. This is not me. I am stronger than this shit. I was crying, and screaming, throwing whatever I could with whatever strength I physically had. It wasn't much, and I got even more hysterical. I wanted it to end.

I needed it to stop.

I was out of control.

I lined up some pill containers, and logically and slowly added up the total mgs. It was for no other reason but I had to stop this pain, this shit that is making me so very sick. I had to make some goodbyes first. I was far too logical amidst the hell and chaos I am in.

I fell asleep. I didn't touch one of the pills until my normal doses.
In my wanting to sleep forever, I slept for a few hours instead.

Not one used to not being in control, I suppose it was one thing I could control just then.

I pulled back, because I didn't know what or how to do anything else. I couldn't be the Rhi that I am usually - the one that loves everyone. Am I losing that quality also on top of everything else?

I had nothing to give.

Rock On

2010-07-30T16:58:00.001-04:00

My new specialist has a lovely face. He is quiet, and adorable, gentle yet strong. He is the lupus specialist in the city, and I was put on the cancellation list - so I went in at 8 am one day this week.

Yes, I went in at 8 am. That is another story.

Just one testament to his reputation, he called my new GP's office and had parts of my chart and my latest blood labs faxed over while I was in the exam room. He had them in his hands within 10 minutes.

We spoke alot. He put me on the table and did the trigger point test which is so very painful (please remember something so little as bedsheets, or a breeze hurts) and he used the reflex mallet on my body. I got 14/18 so he says for sure fibromyalgia (which we knew) and said my hemoglobin is good, although my GP thought the red blood cells were damaged (or not producing now, as are the white cells) but the levels were good - or at least not at a danger level but is still serious enough to watch close.

He asked about plaquinel and prednisone, but didn't prescribe anything yet, which again I was very impressed with. He went over my labs with me, and more and more questions - all that point to lupus. My labs are a mystery. To no surprise. I'm still an epic hot mess.

He said for as much pain as I am in I am hypermobile. Which is what my OT said Friday (dystonia) so although I am hyperextended, he isn't sure if hypermobility is from the ballerina in me or not.

I'm deciding ballerina.

He sends me to another building for blood labs, even though there is one in that same one as his office. I ask him if I can just go there, and he tells me he doesn't want me going there, but won't say why. This is just another challenge, I must know why...

At this new lab, I have to pee in a cup. I'm getting quite good at it, thankyouverymuch.

There is only one washroom for the entire first floor, and it's for staff and public alike. It is disgusting with two stalls. The key is on a sample cup, how cute, right? Talk of just going home to pee was a quick conversation, somehow I manage, walking in myself, avoiding touching anything but myself, almost falling in, but hell yeah, rockstar I am, peed in the cup, and I don't think I caught anything else in the process.

The phleb nurse offered to take my blood in the wheelchair, and I said no, thank you, I can get into the other one. I stood up I said my "It's A Miracle!" I thought she was gonna pee herself laughing.

She was bitching about the bathroom, and she said in the end "what is wrong with people?" I said, I know, I mean you kiss your mother with that mouth? She laughed her ass off again.

I've been in extra severe pain this week since. I have braces for my knees to keep them in place as they are wanting to twist out, especially when I spasm in the twitchies.

They put the rush on the labs. I have to go in ASAP, which ends up as middle of next week to get the results from the GP.

This mystery never ends. It is very confusing, and very hard on the soul.

I thank you for walking this journey with me.

Shiny Tings

2010-07-25T17:12:00.001-04:00

There is a new shiny button on the right, which requires some explanation.

Despite all the claims that Universal Health Care in Canada is free, it still has costs associated with it, and I do not hold extra insurance nor am I on any social assistance.

As I am unable to work I have zero income coming in, and I have costs to maintain - such as my prescriptions, some appointment costs, and managing day to day.

I thank you all for the continued love and support, and please know that it is invaluable to me. That you are with me on this journey is more than I can express.

Thank you.

The Crash.

2010-07-21T17:57:00.000-04:00

Suddenly it's Wednesday.

I got my wish.

3 days last week I felt pretty okay, meaning I could do some things, like go out to the balcony, and open the door myself. It was glorious. I wrote that I looked alive.

This week is the crash.

Saturday I reluctantly tried for sleep at 5 am. By Monday, I had about 4-5 hours of sleep in the past 48. The crash is not unexpected but the intensity is.

Let me explain. On 'good' days, I can do a little bit more and I celebrate each like a victory. I still can't do much, pain is high, and I might be happy but that in no way does mean I feel normal. Not that I recall what that is like. My good days still mean I am bedridden. I spent Saturday and Sunday nights doing something I love, which is the podcasts - one I cohost and one I am an invited guest.

Monday, I fell. Not to the ground this time, but I was too ambitious, first time since I've been back I tried to use the toaster. I fell, into the counter and bounced back into the stove. I didn't cry right away, but it was a shock. Pain shot through me, ribs shifted, and my legs just gave out. I feel like a failure again.

The blackness takes over with no warning, and pushes me around. I can almost hear it taunting me, laughing.

The 'twitchies' are fairly new, and they are rather disgusting. I have no control, and it hurts. I'm just a glass little thing, and it keeps shattering me. I can't sleep. I lie awake, helpless. I've been in tears for days. Each twitch takes my breath away, and I cry a little bit harder.

How in the hell do I of all people have no control of my body, it's what I am supposed to do. I twitch, I shatter, I cry.

Nothing but a silhouette of a dancer.

I willed it to be Wednesday - I willed myself to sleep the days away, which I didn't do completely.

Why Wednesday? I wanted two days of it to attack without my feeling it. I felt it all. But I did it. I made it. Somehow, I keep making it. Despite this hell, something keeps me holding on. The love and support far outweighs, and it is that that I cannot thank you enough for. I am holding on.

I will watch my dance show tonight, and for a little while I will feel like that ballerina, even though a frozen in time one.

I don't like to live in the past, but live in the now, and the near future.

I'll just be one step behind you.

I Smell Like Sunshine.

2010-07-15T16:09:00.002-04:00

"My OT says..." My Occupational Therapist wants me to say this alot, to my doctors, to anyone that may be part of my health team.

I have a health team now.

My mind might explode.

She came back to see how I was with the new mobility aids, and truth, not so well. I dangle and fall off and into the toilet with the extender, (I should keep it just for the laughs) and my awesome pole in the living room helps so much, but I don't think I am out there enough still to justify the cost of it, so it will go back as well.

She suggested exchanging the wheelchair for a transport chair. I love this idea. It's alot smaller, and lighter, (and much cheaper). It has 4 small wheels, and I will need the deepest one because I have long legs.

I asked her if she knew anything that could help with the twitchies - they have been super worse than usual, almost non-stop this entire week. She had me apply heat above the impact points, and I don't want to say this outloud so whisper this - I haven't had much twitchies. I showed her the Voltaren gel from my GP, and she thought I could have it made at a chemist - happens to be one a couple of blocks from me.

She wants me into the Pain Clinic - and again to tell my doctor that "My OT says I should go inpatient or outpatient - but to go".

I asked her if there was anything I could do, since I was so active as a dancer, that I am afraid TLC will come here to do a special on me as the great bedridden 700 pound lady. She did laugh, and said I am far to petite to worry. She mentioned aqua classes, but she said she doesn't want me doing anything (I'm still so severe) except working on the sit-to-stand. That is more than enough on this wee body.

She is coming back next week.

I used to be a sun worshipper. I know it isn't good for me and normally after 5 minutes I am nauseus and down for days. I made it to the balcony all by myself. It is far from my bed, and I packed a bag with my two phones, my new faery book (recent gift from a dear friend) and ipod. Opened the heavy door, and stepped out, shaking.

My intention for 10 minutes lasted almost 70. I am pink! I look alive. I am so happy. My book told me I am the Queen of Laughter. "She is always ready to leap joyously into a situation, and fluttering her wings as she lands in your soup, on your clean shirt or in your serious thoughts.She's out to have fun and she wants you to come with her....In Faery JOY is serious business...when you can't find your keys, stop for a moment, you will hear her laughter in your ear as she shakes your keys.." So you know I'm always going to be around, no matter what. Deal?

I smell like sunshine.

Today I woke up a few times, but wasn't ready to leave my dreams. I was dancing, I was cooking, I was playing and fighting badguys with light. I cured a man that was in a wheelchair.

I walked again down the hall without holding on the wall. This is impossible and I can't quite believe it was happening. This doesn't happen to me! The pain yes, is there, it never ever goes away, but I want to open up, come out of this fetal position. I want to be strong.

This number from So You Think You Can Dance hit home. I hold myself like this, my arm is often on my chest, I was falling - I dance in my dreams.

http://www.youtube.com/watch?v=UqzewHPisNw

My OT says she will help to fix me.

Epic Fail

2010-07-12T20:54:00.000-04:00

Is there such a thing as karma? I used to think so. I thought that not quite everything had a reason, but there was something that connected us to people and events.

I keep forgetting that I can't drive now. Back to this independence loss, it sucks. I had a very long involved dream where I was driving on a highway, and kept swerving to avoid a dark tunnel. I suppose that's what the hardest part of the days are like, fighting to stay out of this tunnel.

Yesterday we went out for my mom's birthday dinner. I had some anxiety about going out. It's just so very hard. The dinner was lovely, but again with the not able to walk, so the wheelchair and those challenges - it comes with it's own set of pains. The restaurant has a few stairs to the dining room, so they haul out a ramp, and there come the stares. I can't take the looks I get. I wish people can be honest and ask me what is going on. I'm more than okay with that.

We need this awareness - this is truly an evil disease.

Today I am of course, I am feeling the effects. I have new pains in my back, shoulders, arms and hands. But that is okay, I get it. I soldier on.

The tunnel is tempting sometimes. I wonder if it would be anything, but I remember the blackouts and the entire nothing.

I'm not ready to stop fighting, even though I live in bed, I have no job, no car, all the things that a successful adult seems measured by.

The failure is epic.

It is always hovering, and it is taunting me - luring me to that tunnel.

To be strong, takes heart and soul. Sometimes it is very tiring.

Strength fail.

I Would Like a Pet Unicorn

2010-07-04T17:48:00.001-04:00

And my own forest with my own creatures and my very own rainbows.

However, my hand I was given has me down this path I'm on.

I am a sick little girl.

I try not to bitch, and just stick to the facts. I don't intentionally leave things out but it's so so much, I just imagine people would get tired of hearing it. I know I am tired of this.

I'm just so tired.

The truth is, I'm in so much pain, I've lost so much. However, I have also gained people that truly care, and for that I am so grateful for.

I don't want to hurt people, and by complaining, I feel that is what I am doing. I don't want to cause more hurt.

I have many scary moments in a day. Everything is such a challenge, even afraid to laugh too hard for my chest popping out or wanting to crack. Some very downright scary moments.

The truth is, I feel like a failure. I am reduced to this - a blob of pain. I am so damn dependent.

I might have happy moments still, but that is not to be confused with pain free or healthy.

I will be getting test results back this week. I am both nervous as hell, yet also complacent. I suppose it's what I have to do to be the strong Rhi that I have always been, even when I was little, everyone around me said how strong I was.

I was.

I am very lucky now however, to have the people in my life that I can lean on, and offer shoulders, a place to cry, to laugh, to be with me and celebrate the past, but ahead with me in whatever future that is held for me.

Because of this I am continuing to be strong, maybe will bitch here and there, and come find my pet unicorns with me.

Thank you. <3

Canada Day and the Missing Fireworks

2010-07-01T15:50:00.000-04:00

Canada's 125th birthday was one of my favourite times as a performer. I was part of a small invited group to perform around the region all year. Performing on different stages, mostly outside with a repitoire of of pure Canadia - some moving, heartwrenching, hilarious and some number purely painfully cheesy.

We were invited to perform on a boat on Canada Day itself. Putting on makeup on a boat on the River was a skill in itself.

The audience was made up of dignitaries, invited special guests, news members and perhaps a polititian or three.

We timed the start of the show so that it would end just before the National Fireworks, that are set off behind Parliament Hill over the water. Our spot was perfect, we finished the show, we mingled with the audience, and saw many boats suddenly come near us, waving frantically. We waved back, since it was so nice of them and that is the aquatic etiquitte no?

The fireworks were late, but it didn't matter, we were high of being post performance. They eventually started, finally!

The next morning my mom went to get the paper as she archives our lives in a photo journal living history. The front page was a picture of us, on the boat with a statement from police, the cause of the delay in the National Firework Broadcast.

We were too close to the firework launch site. Our boat was the trouble - we caused the delay. The friendly boats were police boats trying to get us to move back in time.

Canada's 125th National Broadcast of the fireworks never aired all because of us.

This is one stand out memory, that I am so happy to have been a part of.

Happy Birthday Canada! The land of magical unicorns and maple syrup will always be strong with me.

This Canada Day I am at home, sort of dressed up, watching the festivities. As much as I hate to miss a party, I'm here in my own party.

I'm sure the broadcast will be on time tonight. :)

Escape This!

2010-06-30T23:40:00.000-04:00

This is something that not many people know about me.

Officially I am one belt away from my black belt in Tae Kwon Do. I started studying when I was 13, and loved it. I was eventually put onto performance teams, and doing my tests, complimenting my upcoming dance career. I also taught as well, both children and adults, and again did performing teams. I felt so strong and in control.

This is what is the hardest to get my head around. I feel so out of control, my body is betraying me and there is nothing I can do about it.

My next door neighbour was robbed yesterday. I feel terrible, I was home, but didn't hear anything but the renovations to an apartment upstairs. I didn't have the TV on during the time, and I didn't hear talking. I love my building for the apparent security measures.

I am nervous, and trying to remain in control of my alone time. I'm not sure what I can do - since I have no strength, I can't run, let alone walk much. I have bear spray, which I will keep within arm's reach again. I grew up with a packed bag and hair spray by the bed, and a planned an escape route. I cannot escape now.

I want so much to escape - become in control again. I want to escape the pain, the worries, the everything. I can't defend myself, and I hate that I am so weak. I hate that these thoughts are controlling my out of controlled new self.

I feel like prey. I have been in emergency situations, yet I am still not used to being the emergency.

Escape. Fight or flight. Too weak for either.

I let myself cry

2010-06-24T15:29:00.000-04:00

Since the blackouts started and I was on occasion found by neighbours, my building management put me on a high priority emergency plan. Again with those two words. This plan apparently has my information in the fire panel, and at the closest fire house in the building documents. I understand and appreciate it, however the lack of privacy is still hard to get over.

Yesterday I woke to full fire alarms. I put on some other PJs, which I found hard enough to do. I tried to get to the front door to feel heat, at least put a towel down, but I couldn't get there, and I didn't push it, figuring they will put the plan in place if it was a real fire. If it was, nothing I can do myself.

The alarms stop, I get back to bed. I hear a train, then as it gets closer it sounds like the train blew up. There are no trains near me, nor up this high of course. The sky seems black through the crack of my blind.

The sound was sickening for some reason. I thought I was having another episode for the shaking. This all was within about 3 seconds, and the noise and the world is shaking. Hard. I am gripping my bed rail with all my might and the phone in the other hand.

This was my second large earthquake (large enough to me) in 2 months. The first one was on Easter Sunday in San Diego - 7.2. This one was smaller, but was a 5.5 as the reports started coming in.

We don't get earthquakes like this in this part of Canada, the Canadian Shield is not supposed to move like that. It was felt from Montreal Quebec to Windsor, Ontario with the epicenter one hour north from here.

Minimal damage to things, a crack in the ceiling, and small things knocked over is all.

I am beat up. Again. Thankful that I was in bed, if I tried to stand I would have many worse injuries I'm sure.

My ribs and my back are screaming and parts of my back are disappearing when I try to stand. I feel as though I have shin splints. Of course the body is on fire. I have run a marathon, and the anxiety attack returns.

Turning on my front door lobby security channel, I see many people outside. A fleeting thought, I wonder if someone will come up to me, high priority and all.

A day later, I'm still fighting the anxiousness, and the layers of extra pain on top of this usual everyday horribleness is hard. Breathing is something to concentrate on, and trying to control and go slow and steady so I'm not jarring anymore chest pains. It's scary, but the pain is more frightening.

I cried.

Right this very moment

2010-06-23T00:33:00.000-04:00

This is what my current episode feels like:

There is something pushing me through the ground.

My senses are hyper-aware.

And the pain. The pain has me in it's cold dirty grasp.

It is not letting go.

Something is trying to control my limbs, and pull me away.

So very heavy.

I am in bed, but it is raging. It is slamming my back.

I am cognesant yet very cloudy.

This is the scary time.

My feet are past numb. I try to stand, and they are gone. Yet I feel the intense pain. I have veins popping through my skin, my arms are in a tug of war.

My head is hard to hold up, it wants to swing if I look somewhere.

I am being thrown by my shoulders, pushed. I am drowning in air.

I try to breathe, in attempt to control something at all. My chest is screaming.

There are towels under my knees, a beautiful red wrap under my feet.

All efforts to control so I don't fly away, or be pushed and pulled down.

Anything.

This is happening to me. Right this moment.

La Belle Dame Sans Merci

2010-06-21T14:37:00.002-04:00

I am angry.

I try very hard to not let these emotions get to me, but I am angry.

Welcome into my little meltdown.

I am angry at karma, fate, god, nothing? What I did to deserve this? Does everything happen for a reason? Bullshit.

I understand I am very sick. I get it. I'm not one to wallow in the pain, I'm fighting it, without painkillers thank you very much. If you read my other entries you understand my fears.

I am angry that I can hardly go to the bathroom myself. I am angry I can't cook, I can't DO SHIT ALL. Understand this. I CAN'T do it. NOT WON'T.

People, including me, don't understand this hell, so they get angry and make up what they have to.

People are disappearing.

Fine. I get it. I'm not going to chase. Do whatever you need to.

I am angry that someone very close to me is already grieving my loss. My physical loss, I am already almost dead to them I suppose, I am not angry at them, but this hurts. It hurts like hell. There is nothing I can do but be there, but I can't be. I can't be there when they are grieving me. How fucking confusing is that. I miss them. Greatly. I want them back.

When did I stop being a person with feelings? I still like to be asked how I am doing, you know it's not going to erupt into a competition or a bitch session.

I want to yell - there are 17 elephants that made their home on my chest, my ribs are out of whack, I have twisted knees, my feet and shins are a write-off, my spine is being ripped out mortal kombat style, yet still I can feel it being shredded by a razor. My shoulders are being ripped apart, my back is disappearing. That is just the start.

But you know me, you know I won't.

People are still disappearing, those I never thought that would. Have the respect enough to talk to me about it. I'm not reduced to a potato yet.

More importantly, there are people stepping up. Somehow, and I believe them when they say in it with me for life.That is invaluable, please know how much that means to me.

Whether that's 7, 3 or 1 year or less. I thank you. You help keep me going.

I am angry.

I am hurt.

I am scared.

I am lost.

I am love.

I am me.

High Priority

2010-06-14T20:58:00.001-04:00

A case worker paid a visit today, a sweet grandmotherly woman that assesed me, my status of health and offering more assistance with the non-profit program she is affiliated with. I'm now on high priority for an Occupational Therapist. I'm on high proirity for a hospital program that will take months to get in even still.

She asked pages of questions, can I cook, can I use the bath, can I use a walker. Everything as we went down the list was another slam. I'm really trying hard to accept that I can't do simple things - at all for myself. I'm trying hard to fuck that pride over and over.

I'm sick. I am so very sick.

We've been over what I've lost, and it seems to be more. I was in the meeting for almost 2 hours today, in the living room, and doing nothing but sit on the couch and answer questions. I wasn't alone, luckily. As the pain continued to increase my thoughts get very cloudy. I feel like I am swinging in a giant ship that is going through mud and being hit. Over and over. I was pulling all my energy to try not to look like I was swinging, but I don't know how successful I am. This happens daily. Being awake is pretty overrated.

In addition to the aids that I spoke about already, she offered and really is pushing that I get a Personal Support Worker. So someone to help me up, bathe, get dressed and put something in the microwave. They are not allowed to prepare meals, or do housework, but laundry twice a week is offered. She also offered Meals on Wheels, which is a great program but I don't think would work for me for many reasons. The deliveries are at noon everyday, and I have so many allergies to foods that I think it would be too much of a risk. The Physical Therapist can offer "Energy Conservation Techniques." The Occupational Therapist can offer large rails so I can get out to the living room safely.

She is also pushing that I get a Life Line pendant. Yup, I fall and I can't get up.

Slam - I'm not a ballerina anymore

Slam - I'm 36 years old.

Slam - I don't go outside.

Slam - I need another transfusion ASAP.

My feet go from white to blue to red. My ribs are stabbing, I twisted my knees. My legs jump and spasm. My body is on fire. It never stops. I hear I'm High Priority at every turn. I am trying to be strong, but the fact is,

I'm sick.
I'm so very sick.

Silent Lucidity No More.

2010-06-09T18:46:00.000-04:00

I have since fuck'd pride, and had a visit with a physiotherapist. He was very kind, and very compassionate, I was shocked. For some reason kind and nice strangers still shock me. I have had to put my safety in his hands at home. It's one thing being bedridden, but it's another thing to not be able to get up easily or take some steps safely. Often those steps are met with tears.

Mr. physio had a bed rail, and a bath bench installed. He supports the use of the wheelchair, of course. The bed rail is to help me up, not keep me in, although there is talk of one of those hospital rails with the tray coming. At my surprise, the bed rail is amazing. I have no idea why, since my feet still are a write off. My path is this, out of bed, one step to reach the footboard, another to grab a chair (which has heavy things on it so I don't topple over with it) another to the doorknob, and the frame, another to the linen closet door, and then to the frame of the bathroom. That is usually adventure enough for one day.

The bath bench is a luxury bench, it has an extended seat so I can avoid stepping into the tub, a backrest and a railing. The first time I used it I had some vertigo or a 'sode as I will explain further. It helps, but is very hard to get used to, and I am still unable to shower on my own. When I am alone I can manage as my Nana called a bath in a teacup. Baby wipes are a lupie girl's best friend in the loo. I try to make it to the living room once a day, but there is nothing to hold on to, and I can't use the wheelchair much on my own either, both for the small hallway and the searing rib and chest pain.

The physiotherapist came back to see how I was doing. We sat on my bed and had a great heart to heart. He said, "You are too young to be in so much pain and to deal with all this." I am proud of myself for not tearing up.

To explain what I call a 'sode - short for what I call a 'lupusode', which let me say what it is not first. It is not a flare, it is not a shooting pain. The pain is steady and it seems that I spend a few hours some days in a strange sort of dizzy, like nothing I have experienced before. Sometimes they can be fun, sometimes damn scary, sometimes it is like a lucid dream, others I am confused. Almost as if my body is reacting to the pain, trying to cope while it doesn't take the pain away.

I have been home for about 6 weeks now and have since gained 10 pounds, so I am a full 98. The newest pain is searing rib pain, mostly on my right side. It starts from my back, tightly under my right breast and feels like shooting straight up to my clavicle. Again, it is constant, and it is worrysome. So much so that I gave in and went to a clinic this past weekend.

Of course being a clinic, we had to pick one issue to deal with. We chose blood. I need a transfusion soon, and I am hoping to get onto a standing order with the ER so that I don't need to jump through hoops as I am now. I am not willing to wait for the blackouts to tell me to go. Monday I went to have the tests done, and I wanted to take a chance and go to the office my lovely Dr. Ron was in, it's quiet, the phlebotomist knows my veins. New nurses were there, and took me right away, again rushed my labs to two-three days. The nurse came back to tell me there was a new doctor taking new patients - in Dr. Ron's old suite, we met, in the same exam room that changed my life. She upped my meds to 2-3 Amitriptyline/night. Today is my second day on the upped dose, and my sleep is a bit better. However, I know that there is no chance that I would function in the grown up world - I am not a complete zombie, yet I wouldn't be able to drive or work on it. What the hell, try it now, what's the worse that can happen, I sleep?

The new doctor also brought up Lyrica, which is a new med recently approved for pain or arthritis and fibromyalgia. You know the commercials, I will be on my knees gardening in no time! I'm not buying lyrica, but I am no doctor, I know my body.

I know there is no pain when I sleep. I can dance again. I can walk and laugh and have adventures!

I still have my sense of humour that comes out even more when I am stressed. Getting back to the truck after the doctors visit, I stood up from the wheelchair, put my arms in the air and yelled out "It's a miracle!" in front of high school students. It was my third day out in 6 weeks.

The dancer, the social butterfly and the tv production star.

2010-05-29T19:18:00.002-04:00

Time means nothing now. Sometimes, it's really damn nice too.

It's rather freeing in a sense to not be a slave to the clock. It's a very strange and different feeling, as I have always had my own special relationship with time.

My mom taught me the lesson of punctuality, and to this day, it is important to me, however, I dread making plans of any sort because I have no idea if I can fulfill an obligation, as much as I want to.

Time is a dancer's best friend - from music, to the 8 counts repeatedly, to something I instilled in my dancers too, to respect the time and how to let it work and help them in training and as performers.

The famous '5,6, 7, 8' is magical - and what some people don't realize is that it is not just catching the beat, it is much more than that. It is to centre, to prep, to BREATHE. There is no random time for the 8 counts, it's there for a reason. On stage, it is also a thing of beauty. Lights, curtain, 5678 and GO!

The other relationship I had with time was working in television. I had a few Production Assistant positions from ENG (electronic news gathering) for the field to the live control room. The control room is also it's bit of magic. That is another gift I am so happy to have experienced, it was exhilarating.

I was in the control room for midnight news broadcast. I learned in preshow that the sports director needed to pad 2 extra minutes from his runthrough, I learned what was good material to cut if we were going over. It's not a job for the shy, while the director runs the cameras, the PA's run everything - everyone depends on the many time counts. I had a stopwatch, a digital clock, an analog clock and yes, sometimes yet another stopwatch, each tracking time for many concurrent items. 4 clocks, constant countdowns, constant restarting. It was alot of stress, and I loved it. Half the time I never knew what stories were on the show because each item was a time code.

I had such a relationship with time, I had a hard time not counting in 8's and 60's. I still do. When I was driving, and even just before blackouts started I would get gas and often stop it at $__.59 and then have to think about it to get to a round number. It was a pain in the ass in winter.

Time means nothing to me now, I sleep whenever I can, I eat whenever I feel up to it. I love the overnights too. Somehow it's so peaceful, finally making it through yet another tough shit hole of a day - just is a celebration. The peace is so welcoming, I WANT to stay awake and sleep all day. The days hurt much more. I understand that people don't understand my time now. It is still shocking that some think I should have a 9-5 schedule. I'm a slave to my body, I crave the night. I crave it hard.

I ask you, would you not want to do the same? It's a long day in the day, can't do much of anything for myself so why push myself when I really can't?

I am not lazy, I swear it. I still have a high work ethic, but I am being attacked hard. Life is not easy and the little things are now giant things to deal with.

I have always had a love affair with the nighttime, it is magical.

I was a social butterfly. I'm just a wounded butterfly now.

Time means nothing. It just is now.

Dear Beauty Queen,

2010-05-20T17:25:00.000-04:00

Sunday, May 16th 2010 was the Miss USA pagent, and while I didn't watch, I must adress it.

Miss Oklahoma, Morgan Woolard, said she was cured of lupus. This is part of my letter that I sent:

Dear Morgan,

I hope you are aware of the damage you have done for people living with this devastating disease. I for one am in the fight of my life with SLE and am losing everything as I knew it.

PLEASE retract and clarify that it was drug-induced. Getting off the drugs is no miracle.
You are a dissapointment, and because of people like you, who should know better,
it is damaging when we need education.

If you are in remission, congratulations. Please educate yourself and do something important with your title.

Thank you.

**

To clarify, there are a few types of lupus, mine is Systemic Lupus Erythematosus, which is advanced. Please refer back to the past posts to see my daily struggles.

The one that Miss Woolard is saying she was cured from is drug induced Erythamatosus - which cause an autoimmune response (the body attacks its own cells) producing symptoms similar to those of SLE. There are know 38 drugs that can mimic SLE symptoms, and once stopping the offending drugs, the symptoms are stopped if not reversed. It's a miracle!

Don't get me wrong, I am happy she is well, as you know I never want to wish this upon anyone, however, this just is heartbreaking as lupus is so so misunderstood. I feel her words did more damage than good, this shit ain't no flu, honey.

Other campaigns are all over the media, we need the real education out for what this really is. People are still unsure, doctors are baffled, and unless live with it, or know me very well, you won't truly know. That is what I am asking for help.

We NEED to get the word out, not by House, not by Miss Wollard, but by real sufferers. NOW.

We do not have the time anymore.

Lupus is the little community theatre star, while the big dogs with awareness - cancer is the oscar star.

I ask for awareness, education, and the truth. I have heard some horrible assumptions out there.

Ask me anything regarding this illness, maybe read the Spoon Theory www.bydls.com as written by Christine Miserandino Donato.

My heart sank by Miss Woolard's blanket statement.

I would love no further illness from treatment.

We need you, I implore (see I am serious!) my Rhiarmy to do whatever you can in the help to spread the word, May is Lupus month, great time to start and to keep it going.

Someone you know and maybe love needs a cure. Including me.

Thank you.

Anger as Beauty?

2010-05-10T20:18:00.001-04:00

I have no doctor again. My GP suddenly left her practice, and the ER thinks her and the rheumy are on crack. My blood was drawn every 2 weeks yet didn't do anything even seeing I was at danger levels.

The GP however signed the disability forms, which hopefully will come in fast, however I am not expecting anything for 8-10 months.

I have had to de-roster myself from the GP with the province, and was put on a Care Connect program. I have a nurse assigned to me trying to match me with a new GP, again this will also take months so my options right now are the ER. It will be time to go in soon anyway.

Anger as beauty? Some people say so. Some try to get me worked up and angry to show me I am alive. I would much rather laugh.

I have always been a passionate person, and I continuously go through grief stages.

These are real losses, the pain never ever goes away, something very simple is now a production.

This messes my body, but it can also mess with my emotions. Today is a particularly bad day. I'm not going to feel better, I want to at least feel happy. A huge misconception is that this is like a flu.

I have a very small family, needless to say blood ain't thicker than water. My father's side has been hard to get on with, they are negative and aggressive. When they say "Are you feeling better YET?" That hurts. I understand this is hard on people, I do. And I am sorry I got so incapacitated and bedridden, right. it was just to fuck with your heads. /smh

I'm in a serious way, I rather not argue about how I am feeling, that takes too much energy. I appreciate the asking, happy doesn't mean healthy though.

I've lost everything my body used to let me do, no harm in having some points of laughter in there is there?

Anger as Beauty, Hate as Love?

I am angry today, I apologize.

If you know me, you know it's World Lupus Day today, May 10th, 2010. If you don't know me yet, I hope you know that it's a day of awareness, someone you might know or even perhaps love
have the struggle of life every minute.

Ask away if you have questions. Thank you for the support, laughs and sometimes sharing my tears.

<3

There, I Said it. Fuck Pride.

2010-04-25T14:54:00.000-04:00

In the Face. Jealous much? Yeah I thought so. I've taken the loss of Independence very hard. I have had trouble walking since December of 2006, then got worse and worse. I am now in a wheelchair almost fulltime, from the pain that hinders me for walking.

I started to notice the losses almost right away, but god damn I fought it. I would get to know that emergency brake very well. If I didn't have the strength to push the brake all the way at stoplights, I put the car in park on the reds. One day in winter I was driving up a hill and my right leg had a life of it's own, scared the living hell out of me, luckily I still was able to think fast and not panic.

The biggest loss of simple things came all at once, no driving, (partly afraid of the blackouts but it hurts far too much), taking a step or 4, getting any food and drink is impossible for myself, often I need help in the bathroom too. I can't shower on my own. I can't shower period, but still need to be held and helped.

I was well taken care of in San Diego all winter by my dearest friends, and am back home now, being taken care of by the man when he is in town.

Last weekend I took the redeye from San Diego to Newark. That was the easy part. I had a jackass of a Personal Assistant. This is where I was hit over the head with my lack of Independence.

The PA was very rough with me on the airplane chair, to get to the wheelchair. He was harsh and fast and I in teary eyes asked him many times to please
be gentle, I am in alot of pain. He tried to get me to take the shuttle. He wasn't getting me so I started to talk like him.

PA: "Shuttle YES"

Me. "Shuttle No!. Shuttle stairs"

"Yes Shuttle Stairs. "Look at me, I can't walk".

Due to not taking the shuttle I had to change terminals, which entailed going outside, a skytrain and going through security, for the second time. Continuing through the terminal, he leaves me at the gate. However, he didn't lock the chair, nor help me get in the normal people seats. We argued because he was taking the wheelchair, (I had the chair every other time for all layovers), he tried to convince me one stranger would help me, again I had to say look at me, I can't walk.

PA: "You okay you okay." as he's leaving me.

"Not really".

Thank you very much Newark Continental. Your letter is forthcoming.

Upon my return, I really can't do anything for myself. I can dress myself, but only in soft things. I really miss cooking.

I can't go out to get anything for anyone. I am still self conscious in the chair, for the staring.

I don't Look Sick, but I look as though there sure as hell is something wrong.

My muscles have atrophied, I'm still about 90 pounds. I fall.

I was never one to take things for granted, and I am grieving the losses daily.

This disease is evil. I should be at the top of my profession, I am only young still. I suppose I just hit the top early?

Fuck Pride, let it go.

Dance like EVERYONE is watching!

2010-04-13T18:26:00.000-04:00

My mother always says I was dancing before I was walking. Hell, she says I was dancing in womb. All I wanted to do was dance, music was all over the house, it was such a gift to appreciate all kinds of music, very young.

I started my first dance classes, tap, jazz, and baton. The tap recital piece was to 'Short People', our costumes were little white pants, suit jacket and top hat. One of the girls never closed her top buttons. I thought she was a slut. I was 5. My mom asked me if I wanted to take other things for a session as she was a dancer too and not wanting to push me into her direction. I was horrible at skating and my father fashioned a crash pad for my wee butt. I took gymnastics, which I liked, but still I just wanted to dance.

I was invited to a pre-professional program at 12, Jazz, Tap, Ballet, Lyrical, Modern. We were also competitive which I thrived on, and the technical exams
were hard, but I consistently ranked at the top of each style in Highly Commended. Feeling your body work, move, be alive - so freeing. To do the pre pointe and pointe, I was in heaven. Luckily I was a rock and roll ballerina and never had to wear the pancake tutus. I leave that for the gents of the Ballet Trocodero.

We performed for the Governor General - Canada's Head of State representing the Queen. Every stage was mine, indoors or out. I danced with my heart, my eyes, my soul. Tyra didn't invent smizing. I embraced every role to the nines. At one competition we were doing a hip-hopish tap number which was groundbreaking at the time. Getting up from a floor series my left foot popped. I suddenly thought that I lost it for the team but got up, kept smiling, and finished the dance. Come awards time, I was in teary apologies to the team. We won first place. I was called out by the judges even with compliments. Noone knew I had a hairline fracture in my left ankle until after.

Bring on the triple threats, I was 15 in my first professional musical theatre company. School, dance, rehearsals, I was in it to win it. I loved it so much.
I started teaching at 17. My mom retired her pro career at 17.

That next summer was the sign of something bad. I was ill with Hepatitis A and Mono. My doctor wanted me to be off for at least 6 months, but I only took off two as I wanted to do college, TV Broadcasting. I was finally strong enough to teach again, it was wonderful. This group of little girls I had were very special to me. They started when they were mostly 5, and with me until graduation. They came with me when I opened my studio, funny seeing my kids drive themselves to classes.

I took them to competitions and wanted them to have the experiences I did.
They came to dance at my wedding even. It's beautiful to see them as successful young women today and we are often in touch. To see them embrace the power, the beauty, winning accolades - every time I was so proud.

Something went wrong. I was having migraines for months, I had a hard time understanding why I was on the floor crying because the studio was on a second floor, and often I had to slide down the stairs. I was 30. I was supposed to be happy, not anxious. I moved the studio to the community centre I also taught at the next year. Teaching a ballet class a changement - I landed wrong.
My feet were swelling, and it hurt so much. I had to stop teaching right then.

My doctor took 3 months to do blood work. These tests changed my life. He diagnosed me with lupus. He was a sweet grandfather type and cried with me because he knew what losing my dance career on a dime was going to do.

I was 33. It's not very nice to take the feet away from a rock and roll ballerina.