Reminder!

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!

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

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

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.

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!

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

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

"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.

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

 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

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

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

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

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?

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

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

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

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

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.

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

 "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

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.

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

 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. 

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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.

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

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.

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

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

 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?

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

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

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