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!

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. 

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?

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. 

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.

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.

I'm Glowing!

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.

Where did I go?

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.

The Crash.

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.







                                                      








 

La Belle Dame Sans Merci

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

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.