Episode 4 - A New Blog

Hi All, I have decided to start a new blog to track my new diagnosis. Please check it out at https://proseforpoems.blogspot.com/.

Thanks for reading!

CIDP and Me? Apparently not...

I hope you're settled in with a nice cup of coffee, glass of wine, pint of beer, or cup of tea, this is going to be a long one!  I know I haven't written in a very long time - since January, apparently!  I wish I could explain by saying that everything was so smooth and unchanging, there was no point in writing an update...  However, that's not true.  It's just that things were so confused and, well, rotten, I didn't know where to begin.  Also, I thought it all had nothing to do with CIDP, which turns out to be true but not in a way I ever imagined.

OK, here goes, it turns out that after all this time (4 years) I don't actually have CIDP!  WHAT??!!!  I know, I thought I was pretty textbook there.  But in the world of rare diseases, CIDP was not unique enough for this delicate flower.  No, instead I have a very rare (3 in a million rare) blood disorder known as POEMS syndrome.   Yes, I'm a poet and didn't know it... The 'P' in POEMS stands for polyneuropathy and apparently 70% of people are initially diagnosed with CIDP. It is a little unusual for the proper diagnosis to take so long to follow - apparently IVIG is not normally effective in POEMS. The rest of the acronym stand for other symptoms that I also have.  I could get technical, but I think I'll stay away from that in this post. You can look it up - Rare Diseases is pretty comprehensive and up-to-date.  Stay away from the Mayo Clinic page as it does not really reflect the current prognosis (things have changed drastically with the advent of stem cell transplants, but I get ahead of myself).

This is a lot to take in, I know.  So I'm going to explain a bit about treatment, etc now and then go back to tell the story of how this came to a head.  I'll start by saying that I am OK and in good spirits.  I'm happy to finally have the right diagnosis and to be on the right track at long last.  It is not ideal and it will be a long road, but I am very positive about the treatment and outcomes.  I am now under the care of a hematologist, adding to my retinue of specialists.  I have started a fairly well-tolerated chemotherapy regimen that I will do as an outpatient every week for 16 weeks.  This should get things to a place where I can proceed with a bone marrow stem cell transplant.  It uses my own stem cells, so no outside donor needed.  This treatment has been very successful and is in a field of medicine that continues to improve, so I'm positive.  Once the transplant is complete, I will, if all goes well, be treatment free and continue to improve. I may even get back some of the damage from my neuropathy, but I'm not holding my breath.

On the plus side, I'm done with IVIG treatments! That is quite a lovely prospect, though I will miss my nurses.

That's where I'm at now. I have had 2 treatments and so far, so good... I'll be keeping a little quiet on the social scene for now, but will do my best not to be a complete hermit. I've been given the green light to continue physiotherapy, which is wonderful.

Now, what the heck led to all this? In a nutshell lots and lots of little unexplained health oddities went KAMBOOM and I was finally admitted for ALL THE TESTS in a bid to get to the bottom of my complaints once and for all. Some things have been lurking innocently in the background for years either overlooked for lack of significance or dealt with individually.  However, last summer I started having digestive problems that would not go away.  We spent the following 10 months or so trying, unsuccessfully, to figure out why.

I was admitted for a couple weeks back in May as things were coming to a head.  We thought maybe my gallbladder had to come out, but it just didn't add up.  I had a bunch of biopsies and tests to try to get to the bottom of things, but nothing came back positive so I was sent home.  This is, of course, good, but incredibly frustrating when something is clearly wrong.  To top it off around this time I started retaining an incredible amount of fluid in my abdomen.  My doctor agreed to schedule me for a drain of the fluid (paracentesis), though she warned it would likely come back.  I didn't care, I just needed some relief.

Well, it's a good thing I went for that because blood work revealed that my kidneys were in trouble!  I was sent over to the ER and admitted.  A nephrologist (kidney doctor) was called in and it was decided to give me every possible test in order to get to the bottom of all this.  The kidneys turned out to be a secondary issue because of the fluid.  However, the nephrologist was the one who honed in on POEMS - it didn't make sense to him that anything was unrelated given my age and medical history.

I had a bone marrow biopsy and an appointment set up with a hematologist who travels from Halifax every two weeks. A day after the appointment I was transferred to Halifax to await the biopsy report and begin treatment. Here is where things really changed. They say we all have the same health care across the province, but it's really not true. The resources are so much better in Halifax, it's night and day.  Although the hospital (the VG) is old and needs to be condemned... patients aren't allowed to drink the water or shower due to Legionnaires disease! Really... but I digress.

I arrived in the middle of the night on a Thursday, by the end of the day Friday I had seen a team of hematologists and residents.  I kind of felt like I was in an episode of House.  They played around with my meds and had a plan in mind depending on the biopsy results.  By Tuesday the results were in, showing enough clinical evidence for a POEMS diagnosis, and chemo began.  They kept me for a few more days to make sure everything was going as expected then let me go home over the weekend.  I spent a little over 7 weeks in hospital that time and, let me tell you, there is no place like home!

So I'm home with my boys. A little worse for wear and still fairly bloated but doing so much better! I can eat, for one thing, which cannot be overrated.  I'm even toying with trying coffee again soon...  I'm tired and weak and a long way from where I was, but the tide has definitely turned.  I'm really feeling quite up beat about things - if this reads like a little bit of a downer, I don't mean it to be.   I have Scott, Barney, my family (my parents are even moving to be closer, which is awesome), and friends to get me through.  And hey, at the end I'll hopefully be better than I've been in years!  I'll need to change my blog name, but I think I will try to get back to it and keep you posted.  Please understand if I go quiet though - it took me awhile to get enough of a handle on this to share it widely - hope I didn't scare anyone!  I'll get back to less technical, more personable blogs next time.

Ciao for now!

CIDP and Me - Determination

This is not an update post. Somewhere along the line the blog changed focus from a combination of updates and reflections to updates only. This post goes back to its original spirit with some thoughts about determination. Enjoy!

Sometimes I really have tunnel vision and don’t pay enough attention to my surroundings. Now, don’t worry, I didn’t fall or hurt myself or anything like that, I just obliviously left my orthotist’s office last week without noticing the other person in the waiting room. Well, turns out that person was a nurse who knew me from my Harbourview (rehab) days. My orthotist could not tell me who it was (confidentiality and all that) but she did tell me that the person knew me and was blown away to see me up and about and ‘doing so well’. She told my orthotist that I was the most determined patient she had ever encountered. This comment made me a little verklempt and really touched me. Harbourview was a bit of a dark time for me and I don’t like to think about it too much these days. I was blindly determined to regain my strength and mobility and I guess it showed. You may recall that when I was discharged I was told by someone with little knowledge of my condition that he did not think I would walk again. I channelled my anger and resentment into even more stubborn determination and we all know how that worked out.

Now I’m not saying that my determination (read stubbornness) is the only reason I can now walk with only the support of leg braces inside and a cane outside, but I’m sure it helped. In a way this is a really good time to be reminded of the relentless little tiger I was not so long ago. Not that I’ve given up or even really become complacent, but the need to prove something to myself and everyone else is not quite as strong as it once was. I continue to work hard at physio and at home, but it’s different and I can’t quite put my finger on why. I suppose this is the logical progression of things. As we improve, we, well, imrpove and relax a little, there is less urgency. It becomes easier to skip a day or an exercise and that is a vicious cycle. I still have a lot to work on and a long way to go. I still hope to be able to walk my dog one day. I still hope to build up the stamina to prevent my physical limitations from defining what I can and cannot do. My focus has changed but my determination is still there, it just needs a little kick in the pants sometimes.

So, the next time I feel a little lazy and try to convince myself it’s OK to stay on the recliner instead of doing my exercises, I’m going to remember what that nurse said -- ‘Gwen was the most determined patient I have ever seen’. If that’s not enough encouragement to get me off my butt for 30 minutes a day, I don’t know what is! I need to remember my old self-motivation – if you don’t think you are up to it, do a set and see how you feel. If you stop after one set, you’ve at least done something, but more often than not it will feel so good, you will want to continue. Good advice, if I do say so myself.

CIDP And Me - The Christmas Letter

It's the middle of December and I am way overdo for a blog post. I'm also not sending Christmas cards again this year (sorry), so am going to be a little goofy and post a 'Christmas letter' of sorts to bring y'all up to speed. Keep in mind that it's been a hell of a year but the positives definitely outweigh the negatives and I have truly come a long way! Scott and I are ever grateful to our friends, family and colleagues who have been so supportive and understanding over the last three years. You have each made this difficult transition a little easier.

Gwen  and Scott (it's a Christmas letter, we will refer to ourselves in the third-person) have had yet another roller coaster year adjusting to life with CIDP. January started with a hopeful list of resolutions that were temporarily moved to the back-burner when Gwen was struck low by sepsis (an event that is not worthy of a Christmas letter and will, therefore, receive only passing acknowledgement). In retrospect, she did manage to follow the resolutions through much of the year. She is still waiting to try snow-shoes, but the year isn't over yet!

The winter and spring rolled along with what has become the same-old routine: physiotherapy, occupational therapy, five days of IVIG every four weeks, choir to keep Gwen sane and books, lots and lots of books. Gwen did have the bittersweet experience of changing physiotherapists. She gets very attached to her 'people' so this was a scary prospect. Luckily her new physiotherapist is also her old physiotherapist, so it was a smooth transition. She continued to make slow and steady progress - first using a cane at home, then walking (stumbling) around the house with nothing. Once the snow melted she began dabbling with the cane outside too.

In April Gwen and Scott took a brief trip to Ontario where they had a blast catching up with old friends and colleagues and eating 'all you can eat' sushi. Scott attended a conference for a few days in Toronto while Gwen lived it up in the hotel and surrounding blocks. She even squeezed in a trip to the ROM. It was a lovely, if short, get away.

Spring eventually changed to summer and the routine (minus choir) continued. In early July Gwen discovered she could wiggle her toes a bit, which caused much celebration. She also had a weird brush with vertigo and an inner ear blockage. It was a bit of a scare but turned out to be an easy fix with the magic of physiotherapy.

In August Gwen was subjected to a round of electrocution (EMG/nerve conduction tests) to get a better idea of what was going on in her wrists. The tests confirmed nerve damage but were inconclusive about whether it was from CIDP or Carpal Tunnel (or whether or not it is surgically fixable). An MRI was ordered and Gwen will happily report on the results of this test sometime in 2021 (sarcasm, but she is still waiting for an appointment). In the meantime Gwen continues with occupational therapy and tries to avoid overuse.

The fall has been a little difficult as Gwen found out that she would not be returning to work. After three years her employer was no longer able to hold a spot for her. This was not a surprising development but still disappointing. But, being ever the optimist, Gwen is embracing retirement and making the most of it. Gwen and Scott both took advantage of her birthday present and are teaching themselves how to play the clarinet! They have a long way to go but are having a blast with it. Gwen started writing a column in the local paper about the Cape Breton Chorale and is really enjoying it. She also started going to the pool and looking for volunteer opportunities. In other words, boredom is not an issue.

The non-medical highlights of the season include a weekend getaway to the Cabot Trail Writer's Festival with a good and patient friend, which is sure to become an annual tradition. Scott and Gwen also made their jazz duo debut (not on clarinet) in late November and had a blast playing/singing together. He finally got Gwen out of her choral comfort zone. Physically, the highlight is that Gwen can now stand on one leg for about 3 seconds. Perhaps standing yoga poses are not so far off. Medically, she supposes the highlight is finally getting off Prednisone. After 2.5 years Gwen is finally steroid-free and ready for international competition! (well, maybe not that last part).

So there you have it, to paraphrase Gandalph, life goes on much as it has this past age, full of its own comings and goings, somewhat less aware of the existence of CIDP, for which I am grateful. 

Happy Holidays, Merry Christmas and Happy Festivus to the rest of us. Here's to an even less exciting 2019!

CIDP And Me - Wiggle It... Just a Little Bit!

I haven't written lately because I thought I was on a bit of a plateau and didn't really have anything to share. At least nothing beyond the day-to-day minutiae and complaints that no one really wants to hear about. I've actually been in a kind of funk for the past month or so. However, all that changed last night. What happened last night? I moved my toes! Very slightly (I had to have Scott come over to confirm at first) but definitely.

You may be wondering what the big deal is, so I will explain. I have not been able to move my toes at all for almost three years. They were the first part of my body to be paralyzed and the last to come back. In fact, I really never expected them to come back. My neurologist told me that if something remains paralyzed for two years it is highly unlikely that it will come back at all. For this reason I will not likely be able to dorsiflex (point my feet upwards) and, I thought, wiggle my toes. Being the stubborn person that I am, I still try to achieve both of these movements every day. So imagine my surprise when I noticed my toes! I don't really know what this means functionally. I'm certainly not going to be able to ditch my AFOs and walk barefoot through the sand anytime soon. But, it does mean that my nerves are still healing and making new connections, which is very encouraging.

I made a little video of it because I'm a big nerd and also because I want evidence in case I am unable to repeat my performance for my neurologist/physiotherapist/occupational therapist (the people who have every right to demand proof). And seeing as I'm in a sharing mood, I will post it here for all to see. I call it "Jerky Left Toe with Mole on Sheet with Dog Hair". I can actually move my other toes too but not as noticeably.

I have a theory (possibly complete bollocks) about why this is happening now. When I last saw my neurologist he told me to start standing on my bare feet in the bars at physiotherapy. This struck me as odd as he previously told me to never, ever stand without AFOs. But I guess I'm getting stronger so it is time. He doesn't want me walking or anything - the idea is to get my feet used to the feel of the ground again and to improve my proprioception (balance). Being the good patient that I am, I've been working on this for the past four weeks or so. I stand on a towel (not putting my bare feet on the hospital floor, thank you very much) and try to put as much weight through my feet and legs as possible. I can't stand this way without holding on to anything but I am getting more stable. Anyway, one of the side effects is that my feet become incredibly tingly and buzzy (technical term). I think it's possible that all this standing has stimulated the nerve endings in a new way.

I hope that this is not the end of my improvements (come on dorsiflexion) but only time will tell. It has certainly lifted my spirits and rekindled my drive to continue pushing for improvements and new milestones. Watch out for future greatness! :)

Ciao for now.

CIDP And Me - Yearly Update

Hello everyone! It's been a while since I've provided an update and it's also CIDP awareness month, so here we go...

You may recall that last year I provided some basic information about CIDP as a kind of public service and recognition of CIDP awareness month. I'm not going to do that again this year but I am going to provide links for the post from last year and for another post that I did a while ago that explains what CIDP is all about:

CIDP And Me - Awareness Month

What is CIDP

What I am going to do in this post is give a little bit of a yearly checkup as to how I am doing. That's right, I've updated my trusty line graph!

Of course, I'm more of a wordy person than a picture person so I'm going to babble on for a little while before you can see the graph. I've come a long way since last May, which is pretty exciting. At least with my lower half. My hands are not such a rosy story but I can't complain too much. A year ago I was still relying on the wheelchair any time I went outside. I could use a walker inside and at physio and was starting to get brave enough to take it out. Now my wheelchair serves mostly as a clothing rack. And my walker, well it lives in the car most of the time and is only used when I go out. In the house I stumble around with nothing but my AFOs on (well, I also wear clothes). I use my cane to get to the car and I'm starting to take it with me for short ventures to restaurants, etc. It's all very exciting.

It's interesting though when I think about it because a year ago I figured as long as I was walking without aids that I would be at 85% of my normal. I'm still using this as a benchmark but it's a little misleading. What I forgot about in my drive to get out of the chair is a wee little thing called stamina. Stamina is what enables you to say walk the length of the mall without even thinking about it. I do not have this stamina. I'm pretty much always exhausted. And while I am trying to work on my stamina in physio and through my home exercises, by trying to eat right and sleeping lots, it's pretty hard to come by.

Then there's my hands… My hands are a funny beast. I've regained much of the basic strength that I lost and my range of motion is fine, the problem is with fine motor skills. What are fine motor skills you ask? Well insignificant things like writing, typing, chopping vegetables, using a broom, etc. While I can do these a little, it doesn't take much to cross the line into a horrible spasm/seize-up. I'm trying to find workarounds like my fancy talk to text software but it's tricky. I'm still optimistic that the small muscle groups will come back and I'm hoping my neurologist will have some brilliant advice on how to speed this up when I see him next month.

And now... the graph in all its line-y goodness! I’m using the same rubric as last year - a completely arbitrary assignment of mobility and function out of 100. I have set benchmarks for my legs (walking with AFOs alone is 85, walking with a cane and AFOs is 75, walking exclusively with a walker is 70, being able to stand without assistance is 50). I don’t really have benchmarks for my hands, but I’m not going above 80 until I can write a few pages with a pen and chop veggies for dinner all in the same day. If I can knit or crochet again, that might warrant an 85.

Note: The little dip in leg mobility in January 2018 was a result of my bout of sepsis, and not directly caused by CIDP.

That's where I'm at in a nutshell. Overall I'm feeling pretty good about things. I'm no longer reacting to my IVIG treatments, which makes me happier than you can possibly understand. I'm also (dare I say it) fairly stable at the moment. I'm confident that I will be able to spend a good amount of time outside this summer and have plans for a sprawling deck garden.

So there you have it, my annual update. It's been a roller coaster year with new unanticipated challenges but I've met them head-on and I'm still here plugging away. I guess I didn't really mention all of the challenges in this post but you can read through the archives if you're interested. I leave you with this lovely picture of me standing next to the Bibliomatic, a weird and eccentric random book vending machine that I visited on a recent short trip to Toronto.

Ciao for now!

CIDP and Me - The System Is Down

This post is not about my own health but a little rant about the state of health care and some of the obvious gaps in the "universal" coverage that we receive here. Now, it should come as no surprise to anyone that the state of health care in this province is "a right mess". There are family doctor shortages, specialist shortages, bed shortages, mismanagement, ineffective bureaucracies, etc. I'm not really going to get into all that. It's easy enough to find information by doing a simple Google search or reading the news. I can say, however, that these problems are not hiding beneath the surface. It is immediately evident if you spend anywhere near the amount of time that I do in the hospital that the system is in shambles.

That said, I have managed to secure myself an amazing healthcare team. I'm not going to say I'm lucky because luck should have absolutely nothing to do with it. But I am very grateful that I can receive all of the care that I need here without having to travel to Halifax or wait months and months and months for an appointment. Unfortunately there are many people who are not in my situation. Of course, I've been in the system for some time now - I did start off on a lot of waiting lists for tests, scans, physiotherapy and occupational therapy. 

Okay, that's not really what I wanted to talk about, but there it is. What I am going to rant about at length is the cost (often prohibitive) of assistive devices and technologies. There's been a lot in the news and on current event shows lately about the various technologies and devices available to help those with disabilities. It seems that the passing of Stephen Hawking has spurred this interest. Certainly Stephen Hawking had access to amazing technology and supports. Unfortunately, that is not the reality for most people. Now I'm not comparing myself Stephen Hawking, as clearly my condition is not nearly so severe. But even in my situation I have acquired many assistive devices and technologies over the years and these are rarely covered either by the provincial health care system or by my private insurance. I'm not sure if people realize how little is actually covered and how much of a financial burden a disabling condition can be.

Note: I am NOT looking for financial aid - please don't take this post as a veiled plea for money.

This is one of the reasons why you see so many Go Fund Me campaigns in Canada, the land of universal healthcare. I keep seeing a particular post on my Facebook news feed about a local woman with a disabled child looking for funds to buy a wheelchair accessible van. These vans cost approximately $50,000 and there is little assistance available to help people who require them. It's sad. It's not like these are vanity items or "toys". They are required to allow people to have more quality of life, the kind of quality of life that we as Canadians assume we all have (I realize of course this is not the case in many other demographics as well but that is beyond the scope of this blog). It breaks my heart and makes me so angry every time I see these pleas. As if these people don't have enough to deal with! 

In my own case, I have pretty good coverage. However, I have had to pay out-of-pocket for a lot of things. I'll list a few of them here: the wheelchair ramp outside my house, the bench I sit on to shower, the bar next to the toilet so that I can sit and stand without falling, the bar attached to the side of my bed so that I can stand up from the bed safely, my fun new voice recognition software that I'm using to dictate this post, the hand controls in my car that I put in so that I could drive and have a little bit more independence. None of these items are what I would consider to be frivolous. Each of them allows me to function relatively independently and participate a little more normally in life. Why aren't they covered? Who knows. When we asked our insurance provider about this we were told that they covered the "little things" so that we could take care of the “big things". It's interesting that hand rails and shower benches are considered "big things". Sure, insurance covered my wheelchair walker, cane, medications, and AFOs, and of course I am grateful for that. But the implication that covering these items means that people will have enough money for ramps and accessible vehicles is a little crazy. 

I'm fortunate that I have private insurance, as many people do not. And yes, most of the things that are not covered are tax-deductible, which works for me. However, in order to benefit from tax-deductions you need to pay taxes to begin with. This is not a great help for many people with disabilities or their families. And while there are opportunities for funding and support available to those with lower incomes, they certainly do not go far enough.

So while it's fun to look at all the neat gadgets, mobility aids, and technologies and to marvel at how far we've come in terms of supporting people with disabilities, we must also keep in mind that in many cases these are out of reach. In a society that values universal healthcare, equal opportunities and equal rights we are not doing a very good job when it comes to supporting those with disabilities. It's a very small portion of the population that we're talking about here -- should we really be trying to make money off of of them? Isn't it better to make the tools and supports more widely available so that more people can engage fully in society? Is it not ultimately a bigger drain on the system if people do not have the tools to live safely and independently?

So there's my rant such as it is. This may be a bit more of a political post than you are used to (and I'm fully aware that it has absolutely nothing to do with my progress or CIDP) but it's been on my mind and so I wanted to share. Not to mention, I just got this dictation software a couple of weeks ago and really wanted to try it out with a blog post!

That's all for now:)