Category Archives: CIDP

You had one job…

Saturday, August 13th

We woke up Saturday to pouring rain, which was fine by me because I was under a sort of house arrest as my neutrophils continued to drop. My first temperature check was normal-low (36.5°C), and I settled in to watch some more of the Olympics.

We had been using a tympanic thermometer mom bought when she arrived. Why tympanic you didn’t ask? (This is important later.) Well, at my planning appointment for the stem cell collection we were told that there really was no appreciable difference between how well tympanic and oral thermometers worked and more expensive equals better, right (admit it, in some instances you think so too)?! Tympanic it is!

We had noticed that between Monday and Friday, I seemed to run cooler than the “normal” (ie. average) 37°C, but that happens and when mom tried it it read 37°C exactly.

I now know that there is a big debate between those who believe the tympanic ones are better, and those that only trust the old school oral ones. People Doctors actually get quite heated about this.

Those in the oral camp *snicker, I’m twelve* say that the tympanic one isn’t as accurate. Tympanic converts say that that just isn’t true, and they argue that they are easier to use.  Apparently, the research says that the oral one is only more accurate when you get it in the exact right spot under the tongue.

So…at my Friday appointment, armed with our notes from Thermometers 101, as Erin stressed the importance of my temperature as a sign of a possible infection my body cannot fight, mom asked her opinion. Erin left the room, and came back with an oral thermometer that she gave to us saying, “tympanic ones run cool.” Roger Dodger.

Now that I’m sure you don’t have an opinion about thermometers, we can continue.

Saturday I was tired, a wee bit nauseous, had a bit of a headache, and was a little achy all over. This was no surprise. I was on day 6 of the neupogen shots, and had been warned about bone pain. We stayed quiet, and started a jigsaw puzzle to pass the time.

Jigsaw puzzle

Quiet, rainy day fun.

By late afternoon, the pain in my lower back, hip bones, and femurs was distracting and took my breath away when I moved in to certain positions (like coming down stairs).  I was wary of the codeine that the BMT team prescribed because it has given me stomach trouble in the past, and felt like I shouldn’t need the Dilaudid they had also offered. (Silliness, now that I stop and think.) By dinner time, I was willing to try the codeine (15mg), and when that didn’t help, I finally jumped on the Dilaudid (2mg).

At 3:30pm, my temperature taken with the (hospital provided) oral thermometer was 37.1°C, at 6:30pm it was 37.8°C (and 37.7°C), and at 9ish it had reached 38.1°C. The team had told us 37.5° meant be vigilant, and take it more frequently, if I wasn’t also feeling awful. I wasn’t feeling awful, I had bone pain. A temperature of 38°C was the “consider this one of the reasons for the emergency contact numbers” number.

I have now learned another thing along this journey: pay close attention to which number is the “in case you get a fever” contact number.  In fact, put someone solely in charge of exactly that.  (The irony that I joked about this being important in my last post has not been lost on me, don’t worry. *eye roll*)

Here’s how this went:

Beep beep beep thermometer reads 38.1°C.

“Okay, time to call the BMT team. Let’s get the number.”

Mom finds the sheet with the contact numbers.

BMT contacts

“Here it is. No wait, that seems to be the pager number for the nurses from Monday to Friday, 8-4. Well, there’s one at the bottom here that says ‘EMERGENCY ONLY … call and ask for the… hematologist on call’.  Well, this isn’t an emergency, it’s a maybe fever, and we don’t need a doctor. We just need a nurse from the team.”

“Okay, let’s try this number that’s in the green information book they gave us.” Mom called and explained who we were and why we were calling. Success! The operator told us, “Dr. X is on call for that, we’ll page her and she will call you back.”

Seventy-five minutes later. “Okay well, at 2 or 3 am this may become an emergency, so let’s call the ‘EMERGENCY ONLY number .. ‘”

Beep boop beep boop

“EMERGENCY .. what’s your emergency and location?”

“Oh my, we really only want to talk to the hematologist on call for the BMT team.”

“Hold on while I transfer you off of this EMERGENCY line and onto another one…yes, Dr. Atkins is on call tonight for the BMT team. We will page him and call you back.”

Thank God.

Twenty minutes later, he had called us back and we are on our way to the hospital, per his direction. They would be expecting us.

Jamey and Jess Hospital

Waiting for mom to park the car.

When we arrived at the hospital (through emerg, because admitting is closed at 11 pm) the triage nurse took my temperature with both a tympanic and oral thermometer, and both are…wait for it…PERFECTLY NORMAL!

Triage Aug 13

Well at least mom looks amused.

Sitting in the waiting room waiting for an observation bed, we (half jokingly) muse whether we can just sneak off home to bed. We can’t, and mom (justifiably) doesn’t feel like she can take me home without an accurate thermometer to depend on. So, there we were tired, concerned, annoyed, in pain (me, although debatably the hubs and mom too *smirk*) waiting to finish what we started.

Does anybody know of a good thermometer?

To be continued…

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The countdown…

Friday, August 5th, 2016
green clock

Clock 2. FreeImages.com/Ammar Abd

Mom arrived tonight, driving after work in anticipation of the start of my first round of chemotherapy tomorrow.  I have to be at the hospital tomorrow morning for 11am.  I will be admitted, and then the fun officially begins.  The plan is to do one overnight in the hospital after chemo, and then home to rest and start the neupogen shots on Monday.

This seems like an appropriate time to discuss the whole crazy process that is about to start, and to answer questions like “what is neupogen?”

What is a hematopoietic stem-cell transplant (HSCT)?

Often times when someone says “stem-cells” people automatically think of cancer, and/or cell regeneration like the kind being studied for use in spinal cord injuries, and sometimes crazy science fiction experiments.

This is not the case in my situation. The goal of my stem-cell transplant process is to use very strong chemotherapy to kill the parts of my immune system that hold the ‘memory’ used to attack the myelin sheath around my nerves.  By erasing this immune memory, the hope is that the auto-immune disease process will be halted.

Once my immune system is suppressed with the chemo, I will get a transfusion of my own stem-cells, helping the immune system to heal.  These stem-cells will be collected prior to the depletion of my immune system, and stored until I’m ready to have them re-infused.  Hence, the name “hematopoietic stem-cell transplantation” meaning “receiving a transplant of your own stem-cells.”

Does this have anything in common with the same treatment used for cancer?

The HSCT process is based on the procedure used to treat various forms of cancer. In the treatment of cancer, the goal is to kill the ENTIRE immune system including the bone marrow, where immune cells are produced. To this end, radiation AND chemotherapy are often used and patients often require a bone marrow transplant from a donor to survive.

The protocol used to treat CIDP varies in the level of toxicity. Some programs/institutions protocols’ target only the immune memory (sometimes called stem-cell transplant light) while the protocol used here in Ottawa is more thorough and toxic, in an attempt to not leave enough immune memory to replicate the disease after transplant but not so much as to kill the bone marrow.

What is the process?

At this junction, I will only try to explain the collection process part of the transplant procedure.

The first phase of the collection process will be one dose of chemotherapy called cyclophosphamide.  I will experience many of the traditional side effects of chemotherapy, including hair loss. My blood counts will fall, and I will have to watch for signs of infection like fever, pain, and/or nausea. I will have to stay away from crowds, and definitely away from anyone who is already ill. This fall in my blood count will help to springboard the growth of stem-cells for the next part.

syringe and vial

Syringes and vial. FreeImages.com/Brian Hoskins

After the chemo, I will receive 10 days of subcutaneous neupogen injections at home (thanks for doing that mom!). The neupogen will stimulate the growth of the stem-cells found in my bone marrow, and cause them to push out into my peripheral blood.  After this happens, these stem-cells will be collected in a way very similar to dialysis. I will be hooked up to a machine that draws the blood out of one arm, runs it through a machine to separate out the stem-cells, and then re-infuses it back into my body.


And so the adventure begins…

Again, it’s been too long since I’ve posted something new. But get ready, because this is.going.to be. worth it!

During the winter of this year, my doctors and I decided that it was time for the big guns. A decade of treatment was preventing a rapid decline, but not the slow progression of my CIDP.

There had been discussions of an autologous haematopoietic stem-cell transplant (aHSCT) as a possible intervention for years, but up until this Spring it had always been an ‘in the more distant future’ discussion.

When I saw my neurologist in January, the hubs, the doctor and I discussed our ideas about starting a family, and the hubs and I agreed that given my current declining health, our own biological babies were not an option.  I may decide to discuss this more at a later date with you wonderful readers, but suffice to say for now that we came to the decision, and are both at peace with it.

As a result of this discussion early in the new year, I was referred back to my hematologist here in Ottawa to begin anew the discussion of the transplant. He agreed that now was the time.  While my level of disability wasn’t changing dramatically, I had most recently lost the ability to write by hand, and had been forced to stop working due to crippling fatigue.  I was managing – but barely.  We all agreed that putting off the transplant any longer didn’t really make sense. I was officially referred to the bone marrow transplant (BMT) team here at the Ottawa Hospital.

January turned to May, May to June, and I was able to finally meet with the BMT team. They were confident that I was a good candidate for the transplant and sent me away with the next steps being some pre blood testing and the promise of a planning appointment for phase 1: the stem cell collection process.

June turned to July.  The wait was difficult – knowing the fight ahead of me made me and my peeps impatient. We knew what we wanted. It was going to be tough, but we all thought let’s do this already!

Coincidentally at this time, the results of a ten year study of autologous stem cell transplants in patients with Multiple Sclerosis was published in the Lancet, and one of my physicians, Dr. Harold Atkins was one of the lead researchers on the study. The timing was indeed interesting.  The study received a lot of press, and allowed me to point to easy to understand stories in the media about the procedure. This came in handy when trying to explain to my friends, family, and co-workers what I was about to go through.

On July 28th, I met the BMT team for my planning meeting. I left with lots to read, a schedule, and a start date of August 6th, 2016.

Planning appointment Collection

The hubs and me at my stem-cell collection planning meeting on July 28, 2016. The part of photographer was played by mom.

We had arrived.  It was almost go time!


A lot can happen in a year…

One crazy year

It’s been a BIG year!

The highlights:

  1. I ended a relationship, and rekindled another
  2. I totaled my car (Thank God nobody was hurt…except the poor deer RIP)
  3. I bought a new car
  4. I moved
  5. I started a new job
  6. I lost and then gained 10 pounds
  7. I reduced my hours at work
  8. I lost the ability to write by hand
  9. I got married(!)
  10. I learned to write by hand in a different way

It is now widely accepted that chronic stress  can lead to, and exacerbate illness. The year preceding my diagnosis of  CIDP, was arguably the most stressful of my life up to that point.  I am conscious that stress (even happy stress) effects my health.  It effects my function, as well as my energy level.  Naturally a “high strung” person, it’s a battle I am always fighting with myself.  I am proud to say that years of chronic illness coupled with unexpected twists and turns in my life, have lead me to a much more “zen” place.  I’ve gotten here because I had to…one might say “chill out, or die”, and it will ALWAYS be a work in progress for me.

As 2015 draws to a close and there looks to be calmer seas on the horizon, I am taking some time to look back, but also ahead to what I want for 2016.  I survived, and more importantly (mostly) enjoyed this year.  It no doubt had an impact on my health, and has left me with an energy and functional deficit I’m working to get back to black.  But it was totally worth it. I could try to live in a bubble, where I resist change.  But then again, it’s stressful to avoid stress…and where’s the fun in that?!

This year, the changes I made were out of necessity. The things I did, were largely to keep my head above water. Next year, I hope that I can make more changes by choice, and spend some time working towards becoming even more myself. That includes sharing more of my journey here with you. The wins, the losses, the mundane, and the significant.

Stay tuned and learn with me, while I investigate assistive devices, and technology; interact with physical and occupational therapists, nurses and physicians; increase, decrease, and try new drugs; work more, work less, and maneuver through everyday life, and relationships, with a chronic illness.


Brace yourself…

AFO’s Part 5: The final frontier?

I LOVE LOVE LOVE the bright colours of the runners right now. Also, a shout out to my friend Janine for

I LOVE LOVE LOVE the bright colours of the runners right now. Also, a shout out to my friend Janine for taking these pics!

Up until this point, I have detailed for you dear readers, my quest to find a new and better AFO. I have shared my reasons for wanting a new brace and communicated my setbacks, frustrations, and failures. This is the fifth and final post in this series devoted to my search.

It became obvious pretty quickly after leaving the Orthotist’s office that I was buying the WalkOn AFO. As I mentioned in my last post on this topic, the WalkOn is not profoundly dissimilar from the rigid plastic AFO, that I was trying to replace but I reasoned pretty quickly that any upgrade was worth it. The difference in weight of the brace alone, I deduced would be worth the cost.

The other important differences between my old AFO and the WalkOn include:

  • The thinner foot bed fits into a shoe that is a medium width.
  • The rigid support doesn’t come up the back of my heel so there is no extra length required in the shoe.
  • The rigid support doesn’t directly make contact with my leg, other than where it fastens below the knee, meaning they will be less warm, and hopefully more comfortable.

Other factors in my quick decision: I was almost certain that my insurance (through work) would cover 80% of the $2500 price tag (slightly less than the $3000 I was anticipating). I also knew that I had the wonderful support of my parents, who would be able and willing to help me with the cost. For all of these reasons, I thought “what do I have to lose?”

I quickly consulted “my people”, and submitted the requisite insurance forms.

Two weeks passed and I went in to have these new AFOs fitted.

I was eager to try them out!

There were moments of frustration at the fitting, which were nobody’s fault. One of the problems with neuropathies is that nerves are “weird” – scientifically speaking. Pain, pressure, or discomfort is often referred to different places. So pressure on one spot of my foot is not felt at that spot, but in a whole other area. This meant that I have a really difficult time telling the Orthotist where the WalkOn was rubbing, and in turn, he had a very hard time guessing how to fix it. We both did our best, and he again offered assurances that I could come back if I had any problems.

Check it out, I almost look sporty!

Check it out, I almost look sporty!

Fast forward four weeks, and I now have a more informed review of the WalkOn AFO.

A quick note, this is MY review. I am sharing it in the hopes that others can use the information to make an informed decision, if and when they consider bracing options.

The Pros:

  • The WalkOn AFO is indeed more comfortable than my previous rigid plastic AFO.
  • It is lighter. Much lighter. The lighter weight helps reduce fatigue, so I am able to walk for longer periods of time, more comfortably. I am able to walk much faster (obviously) than without any AFO (duh!) and maybe a little bit quicker than with the rigid plastic ones.
  • The rigid support not making direct contact with my calf is great. It definitely makes them less warm, and therefore more comfortable.
  • It is much easier to get my foot into my shoe with the WalkOn since it doesn’t come up behind the heel. This cuts down the time and effort it takes me to get into them.
  • It fits into my size 7.5, medium width shoe.
  • Like my rigid plastic AFO, from the front, the WalkOn is not visible.

The Cons:

  • I haven’t been able to fit an insole into my shoe, on top of the AFO foot bed to act as a cushion. An insole is suggested by Ottobock, but there is no room (height) in my shoe. Also, my toes/feet curl into uncomfortable positions when I have tried an insole. They slide in MUCH easier without. However, this means that my foot is directly on the hard carbon fiber foot bed. This was the case with the rigid plastic AFO, so while it’s not really worse, it’s no better either. On this note, I find it uncomfortable if I’m doing a lot of standing, and it aggravates an ache I have from an old break in my foot that would have been prevented if I had been wearing an AFO, and probably not talking on my cell phone, while walking.
  • The brace has given me a blister where it comes around the inside of my foot. But only on the right foot, incidentally. I have MacGyver’d a solution that involves a store-bought gel pad used for high heels(!) while it heals, but I’m not sure how I’m going to manage this over the long-term. I returned to the Orthotist and he fastened plastic cushioning to the area that was rubbing, but it only seemed to rub more. I should probably may make another appointment.
  • The cuff that fastens below the knee is quite bulky, and I am anticipating a bit of a challenge fitting it under long pants.

The verdict:

Like button

Although I am struggling a bit with the blister, I am pleased with my purchase. The lighter weight of the carbon fiber, and the cooler fit in the summer months have made it worth it. I am also pleased with the overall look of the WalkOn. I have had a few of the “peeps” mention that they look more “new age” and “techy” and less “medical” or “old”.

Score one for vanity!

Finally, I feel that I must spend a minute ranting about discussing the price point. At $2500, this was not a “thrifty” purchase. The Assistive Devices Program (ADP) here in Ontario, does not presently cover any of the cost of a carbon fiber AFO like the Walk On. ADP will subsidize the cost of the rigid plastic AFO however. For some, this isn’t a decision they can make – the rigid plastic AFO is their only option. I am fortunate to have benefits through work that did in fact cover 80% of the cost of the WalkOn. This still left a $500 out-of-pocket cost but I was able to afford it. I mention this because I think it really is a shame that there is no available public funding (that I know of) for a solution other than the very base option. I can guarantee that these new AFOs have made me more active, and consequently maybe more able, than my previous ones. This may very well in some way lessen the public health care I need, and increase my productivity, participation and contribution to society.

*end of rant*

No doubt, I will write posts in the future about self-esteem and body image, and how having an assistive device like an AFO/brace/cane/walker affects who we are, how other people see us, and how we see ourselves, but I feel like this series on this aspect of the journey has been a worthwhile exercise for me and I hope others.

I made a decision to try for something better. I faced some difficult, demoralizing situations, and I learned about myself and my illness. I’m happier, and more active in the end, and while it may not be the perfect solution I was hoping for it was worth it.

Success!

A quick final thought: I’d love to hear from anyone who has faced a similar challenge generally, and specifically regarding an AFO. This exercise (further) demonstrated to me the need for resources and firsthand accounts such as these, and also a constructive discussion around accessibility and support. Let me know what you think.


Run! Forrest! Run!

Runners Converge Large

Runners Converge on the Gallery” posted by ActiveSteve is licensed under CC BY 2.0.

“It’s never too late to be what you might have been.” – George Eliot

This weekend was Race Weekend in Ottawa. Every year, runners from around the world converge on the city for two days of competition in May. Registration always sells out while there’s still snow on the ground, and more than 46,000 people participate in the races that start Saturday morning and wrap up Sunday afternoon with the marathon.

Ottawa is full of runners – the culture is alive and thriving. The Running Room does well here, and across the city, people talk about what run or marathon they’re training for, why they’re running and how much they really need to run. I’ve seen girlfriends shed pounds, find peace of mind in hectic lives, and gain confidence by running, and I know it’s a positive activity for many around me.

Most of the time when I stumble into a conversation with a convert runner, I smile and nod and compliment their dedication. But every year around this time I feel a twinge of jealousy as the weather gets nice, and the Rideau Canal pathways start to get congested with spandex clad, water bottle carrying, stop watch toting runners. I pass them on my drive to work in the morning, and then again in the afternoon on my commute home. They run in the evening, and there are always a few out late at night. The running talk starts at work, on twitter and Facebook, and at social events. I continue to nod politely in conversation and gently try to change the subject.

I can’t run. Walking is really quite an accomplishment some days. If I could run, would I? I don’t know. But I resent that I can’t.

I wasn’t diagnosed with CIDP until I was 24 years old. Doctors speculate about a missed diagnosis when I was 12, and wonder if my condition went untreated for more than a decade. *More on that another day*

Through my teen and young adult years, I was moody, and skinny and a little melancholy. I was a klutz, kind of awkward and not into sports. I was one of those girls that wanted to work on the yearbook, so I could get out of gym class.

I didn’t exercise apart from walking (as pre-teens/teens do, because they don’t yet drive) and I just wasn’t very physically active. This was always attributed (even by me) to my countenance and not my physical condition. I didn’t do these things, because I didn’t want to.

The question I often ask now is: Is that true? Did I opt out of physical activities because I was moody and sullen, or did I opt out because I was weak, uncoordinated and tired, which contributed to my moody or sullen disposition and in turn caused my “I don’t want to” attitude, instead of coping out with an “I can’t”? The truth is, probably a little bit of both I suspect.

The logical next question for me becomes: Who would I have been if I hadn’t fallen ill? This sort of navel gazing is reserved for platforms such as this blog and I try not to spend too much time in the past. What’s done is done. No mashing of teeth, wringing of hands, or sleepless nights are going to change what is. But to ignore any potential correlation between who I wanted to be, my physical condition, and who I have become doesn’t seem to work for me either.

Because of this, I unpack these questions for a while and toss them around. I try to find something useful out of the pursuit, something I can learn about myself, and then I pack them back up and carry on. Sometimes I find it cathartic, and sometimes I find it depressing.

Maybe I wanted to be a track and field star? An Olympic swimmer? A dance teacher? Maybe I would have been a wood worker, or a mechanic? I’ve often thought that I’m most happy when I’m creating something or fixing something with me hands – such as they are.

Now don’t get me wrong, I understand that even fully able bodies aren’t able to will themselves into being sport stars. But baby, maybe “I coulda been a contender”.

More in the realm of possibility, I would have the opportunity now, as my peers do, to “take up” running, or mountain climbing, or knitting, or …welding! More recently, I have become acutely aware of the things that I cannot do. It’s been hard for me to realize that there are things that I would in fact, like to do, but can’t.

I’ve used “I don’t want to” as armour against the disappointment of “I can’t”, or more accurately “I’m scared I won’t be able to”.

It’s been even more difficult for me to either accept that there are things in this category that I will never do, or to work up the courage and energy to advocate for myself and to find ways that I can.

I’ve tried to adopt the position that I should do what I can with what I have. Grow where I’m planted, and any other of those appropriate platitudes. But, I’m afraid that I may have actually adopted the settle for the way things are mentality. The stay alive but maybe not thrive attitude. And that’s not working.

It’s time to again start trying things I want to do, even if I’m afraid that I won’t be able to do them. It’s time to admit that I want to, but don’t know if I can. It’s time to start investigating workarounds for the things I want to do, not just the things I need to do day to day. It’s time to start living and not just existing.

The first step is realizing there’s a problem. On to the next…


You should be writing this down (and other advice I didn’t take)

I started working at Drugs R’ Us during my third year of university.  I got the job, because an old roommate who worked there first had moved on to bigger and better things.  I was jealous of her connections and good fortune, but none the less thrilled that I could leave the job I was working in watch repair for a major department store where my bosses were traditional middle eastern men, engineers in their home country, and not too happy about working retail in this one (with a girl).  They were kind, but from a very different culture, and in their late 40s.

Housed beneath a downtown office tower and attached to a hotel, Drugs R’ Us had a daily clientele that included 30somethings in power suits with trust funds, bureaucrats who killed time at their desks between breaks, tourists and business travellers from all over (but usually the US), the hotel’s perfectly coiffed in-house prostitute who came in every.single.day to buy the jumbo box of condoms, and homeless men and women who stumbled in and tried to drink the Listerine in aisle 3.

Being 22, and age-appropriately self-involved, I spent WAY too much time complaining about a perfectly acceptable form of employment for a student.  I would tell anyone, I mean ANYONE who would listen, about Drugs R’ Us.  I talked about (in no particular order): my coworkers – women in their 30s, who spent hours when the magazine orders came in, drooling over the Playgirls, the boss and his expectation that I (guffaw) work, the clientele who I was forced to serve with a smile, no matter how they looked, smelled, or acted.  I talked about who came in and told me their life story 10 min before close, who was stealing what, who came to work still drunk, or high, who had sex in the store room, who arrived late and left early…blah blah blah.

I was angry.  Here I was getting my “fancy” university education, a chronic over-achiever from a small-ish city being “forced” to put my brain on pause to work retail.  I did not live entirely in the real world.

During this period, I affectionately call my quarter life crisis; people close to me were treated to sarcastic, often hilarious soliloquies about my day, my week, my month, and my poor, overprivileged middle class plight.

“You should write this down, people won’t believe it,” friends and family told me.  This was before the advent of Kitchen Confidential, and Reality TV.  But as most 22 year olds do, I did not write any of it down.  I was busy stressing out about needing job experience, to get job experience, about keeping a man, about whether I looked better with bangs.

3 years later I had my degree but I was also losing the ability to feel my fingers, climb stairs, or stay up past 7 pm most nights.  I was still stressing out about needing job experience, to get job experience, about keeping (the same) man, and about whether I looked better with bangs.  “Maybe I should refer you to a neurologist” said my doctor. “I’m fine, it’s probably just a pinched nerve” I replied.  “Let’s do it anyway” she insisted.  Good call doc.

A year later with a diagnosis of Charcot-Marie-Tooth, I was back in my home town.  Unable to walk unassisted, cut my food or sometimes walk to the bathroom.  (The man was gone by the way).  I was no longer stressed about my hair – I was now stressed about being 25 with a permanent disability, about walking with a walker, about gaining 40 pounds because of meds, about having strangers speak slowly to me because of the way that I looked physically, about what the rest of my life could possibly look like.

Again, I was angry. Again, the people I love and who love me got to hear my bitter sarcastic diatribes against the world.  They say when something really unlucky happens that you can either laugh or cry.  Well I chose to laugh.  And they laughed with me.  We laughed about the walker, we laughed about my falls, in the hall, in the bathroom, in the kitchen.  We laughed about the doctors and their physician speak, we laughed about the crazy witch doctors we were investing time, hope, and money into. We laughed about all the terrifying and negative things that were happening to me, and by extension of their love, them.  We found the humour (dark and light), in every situation.  Sometimes, it was after a really good meltdown, but mostly it was just as we tried to navigate a new way of living.

At the time, my mother championed the “you should write this down” movement. She tried to convince me that someday, I would want to remember those moments, remember how I got through them.  I doubted it, highly.  At the time, I wanted nothing more than to forget about everything that was happening.

Another year later, I had FINALLY been diagnosed with CIDP, and was FINALLY being treated appropriately.  I was regaining my health, and my independence.  We were all starting to embrace the idea that I might live an (almost) “normal” life.  I felt like I had been given a gift by the universe, and now I had to get out there and appreciate it.  So I did. I moved back Ottawa, got a job, found a boyfriend and lived on my own.  But I was different.  My experience had changed me.  Everything looked different.

“You should write it down,” I heard again.  From everyone this time!  My Mom, friends, co-workers, people in doctor’s offices, my therapist, every time I spoke about my experience in any length, someone would say I should be writing it down.  But of course, I didn’t.  I felt I had nothing to contribute.  Lots of books, blogs, articles, etc. were written on chronic illness.  What could I have to say that needed to be heard?

And that’s how it’s gone on for the past few years, until now.  Recently, I started to remember how I felt in the throes of my illness.  How I had searched and searched for anyone who had been through what I had.  For anybody who had made it through to the other side – anybody healthy, well adjusted, and happy.  And the pickings were slim.

Mom and I have often discussed why the internet is a bad place to be when you can’t sleep, are sick, and/or feeling sorry for yourself.  Often times what you find when you search the interweb are the people who are also awake, sick and/or feeling sorry for themselves.  People who share a similar illness narrative commiserate, and those who are doing well, aren’t around, because they’re out living life.   This is of course a generalization, and I am by no means slamming support however it is found. I wish only to explain MY experience.  People counselled me not to do it.  But I did anyway.  And I never, ever felt better for it.

With this in mind, I’ve started to turn over the idea that there might in fact be some room in the discussion for someone like me.  Someone with an illness narrative that might help another who’s 25, 35, or 60, using a walker and wondering what the hell happened to their life. Someone who’s got a real, honest, but infinitely optimistic point of view about life with a chronic illness, and more specifically life with CIDP. So here I am.  I’m taking the advice, I’m writing things down….