Tag Archives: expectations

Day +58

snow-scene

Remember this?! It’s baaaaack. Freeimages.com/Margot H

It’s snowing. Big, wet, white, “winter has arrived” flakes.  While I know that this means that my life gets more challenging (think boots, ice, and cold hands that don’t work) it IS pretty, and snow makes everything feel ‘Christmasy’, don’t ya think?

My apologies for leaving you all wondering what has been going on over the past few weeks, but honestly, it’s been uneventful.  I’ve got a little over two weeks left of the daily infusions of Ganciclovir. My infusions are down to once a day, and a smaller dose. Homecare taught us how to maintain my port, and change the bag on the infusion pump, so we’re pretty self-sufficient. The nurse only comes once a week to change my dressing.

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The big bag, was my initial dose, everyday for two weeks. The little bag is my dose now, once a day.

The biggest news (!), is that I’ve reached the halfway point. Halfway to +100 days, the milestone for the transplant doctors before which infection is most dangerous, and things going sideways are the biggest concern.

I’m feeling pretty good. My energy level is already better than it was before the transplant (!!!), so that’s a great sign. I haven’t noticed a change in my CIDP symptoms, but we’re not expecting to, this early.

Remember that the goal of the transplant was to STOP the progression of the disease. They’ve been very clear that they don’t EXPECT an improvement, and if things do improve it will be several months (or years) from now. We stay hopeful.  Right before the transplant, I had another little slide in my symptoms, and it means I lost the ability to write by hand, and the walker has become more of a necessity. Even typing is slower, and less comfortable than ever. So…we’ve all agreed that even if I can reverse those things, we’ll be ecstatic.

My appetite is pretty much back to normal, while I do still seem to be nauseous more than I would like.  I’m not taking anything on an ongoing basis for nausea anymore, having just stopped the olanzapine a couple of days ago. I’m only taking pills four times a day now, instead of six!

I’m still bald(!) and waiting impatiently to see signs of growth. I think it will definitely help my anxiety once it starts to grow, because right now I still LOOK sick and that is proving to be more stressful psychologically than I thought it would be, especially when leaving the house.

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My STILL bald head

On that note, the hubs and I have been to a couple of matinees the past few weeks (when there is almost nobody there), and I have been shopping quickly, and at off peak times. I’ve been on many car rides, and started driving again (yay!) last week.  I remain hyperaware of my surroundings and anxious about being around people, but I have been cleared to eat out again and so even had veggie, and cooked SUSHI after a movie last week! (small victories!)

 

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Day +30 (1 month)

It’s been one month since day zero, ONE MONTH since I got my stem cells back. I can’t even believe it!

It’s been an uneventful couple of weeks here. Like I mentioned in my previous post, I have good days and bad days.

In general, my energy level is better than prior to transplant. I’m not waking up every morning already planning how to get back to bed, and sleep. Rest assured however, I am still a #sleepviking, and taking “healthy” naps…especially on bad days.

Not much else feels different so far. I’m still pretty unsteady when I stand or walk, and keyboarding is still proving to be more challenging than a few months ago. I write this with an awareness of what the doctor’s said all the way through. The goal wasn’t to get more function, that will be a plus, the goal was to stop further loss of function.

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Module L , waiting to have my PICC line removed

Some of the highlights from this week included: our weekly check-in at Module L (went fine, AND they took out my PICC line!), and a trip to a matinée of Bridget Jones’ Baby. It was cute, and mom enjoyed it too. We took a lovely drive to see the fall colours in the Gatineau Park, and we made it up to the Champlain lookout. What a view!

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Me and mom at Champlain look out.

I’m feeling a little bit of cabin fever. We’ve gotten a bit of conflicting info about whether or not I am “cleared” to leave the house. Some of the BMT nurses say no, while some say that going out is ok as long I stay out of crowds.  Unfortunately, the puzzles I took out for the puzzle addict mom have pieces that are too small for me to manipulate. She just bought one with larger pieces, we’ll see how that works.

The hubs has also reintroduced me to cribbage, and so we have a bit of a contest on, loser (the hubs), owes the winner (me) a coffee. *wink*

My appetite, has been up and down. I’m still taking all the anti-nausea meds (olanzapine, Zofran, Maxeran, Nabilone) and they’re still doing their job. *thumbs up*

Now a final note…on hypochondria. Ha! How’s that for a closer! I joke, but it’s real.  I am surprised (a little) to find out how hyperaware I am of EVERYTHING. The food I’m eating, the people I’m near, the doorknob I’m turning, or the handrail that I’m using. With their germs everywhere…forever unclean… I’m really having trouble not turning into a germaphobe who panics at the occasional sneeze, but I’m doing my best.  They keep comparing my fragile immune system with that of a baby’s, and I’m telling myself babies are resilient…hey, it’s how I get through.


Brace yourself…

Source: "quote for stephyk." was posted by @aerial_m under CC BY-NC-ND 2.0

Source: “quote for stephyk.” posted by @aerial_m is licensed under CC BY-NC-ND 2.0

AFOs Part 4: Managing my expectations.

After some help from my neuro’s office and my mom’s mad “google” skills, I decided on another Orthopedics company in Ottawa.

Closer to work and in a brand spanking new location, I irrationally took this to mean, I should have tried them from the start.

I made an appointment, and this time right on the phone to the receptionist I said. “I’ve been having trouble. This isn’t my first rodeo and I’ve been disappointed by my options before. Also, money is not a limiting factor. Can you please pass both of those tidbits on to the person that I will be meeting for my consult?”

Forward? Yes and kinda crazy, possibly. I figured, maybe I wasn’t direct enough the first go round? Better to have her think a) I’m crazy demanding, and b) I can afford to be shown more than just the base model. My reasoning: I could temper both of those expectations in person, but maybe she’d be motivated to do some recon on the technology before I arrived.

I walked into the office, and it still had that new car smell (+1). It was bright (+1), the receptionist was pleasant and allowed me to email her my script while I sat there and waited (+5).

Turns out, I had been to this place a few years back, in their old location. My stomach flipped as I recalled that the person I saw at that time assured me that my rigid plastic AFO was all that was available (-3).

This time, the Orhtotist watched me walk, looked at my legs and feet, and listened to the Coles notes version of my DWTS story. I told her that I had been to another company recently and hadn’t been happy with what they had offered, and why.   We also spoke about the last time I visited a few years ago, and she went on to explain that the technology had come a long way in the last 5 years. Maybe there had been no other option at that time, she reasoned. I was skeptical, but I’ll concede really what else was she going to say, right?

She asked me about my motivation for a new pair and after a few minutes she then went on to suggested the WalkOn AFO by Ottobock. She didn’t really entertain other options, saying that she felt strongly that this was the best option for me.  She did not have a pair for me to try on, but showed me a picture, and explained how it differed from my rigid plastic AFO. She told me she would order them (in my size) and I could come in to try them on.

I went away on vacation and they were waiting for me when I returned two weeks later.

WalkOn AFO

WalkOn® by Ottobock

Interestingly, I had tried on the WalkOn at the first place I had visited, but it was the wrong size (like I needed a small, and it was a large). It didn’t work.

This was better, much better. As it was not yet fine-tuned to my foot specifically, it would not fit into my shoe. She was however, able to offer a pair of shoes that worked. I had to try on a pair of those awkward, ugly, bright white running shoes I loathed. The WalkOn feels very similar to my plastic AFO and at that I must admit, I felt another pang of disappointed.

Seeing it on my face I reason, she asked me what I was thinking. I explained that it didn’t feel much different, and asked her if it could go into any kind of sandal.

I also brought up (again) other AFOs I had seen in my search. For each one, she knowledgeably and rationally explained why she thought they weren’t the best choice. I wasn’t hearing what I wanted to hear, but I was hearing it in a way that I could process and rationally accept.

She conceded that it isn’t structurally, dramatically different from what I had but went on to explain that the thinner foot bed would fit into my normal shoe size, that the support didn’t come up the back of my heel, so there was no extra length and that this support didn’t directly make contact with my leg other than where it fastened below my knee. They would be less warm, and hopefully by extension more comfortable. She reiterated that carbon fiber is much lighter than the rigid plastic also.

“You shouldn’t try to put them into a sandal” she said. My face dropped. But why? She explained that putting it into a sandal would void the warranty. They are meant to be worn with a closed toe shoe. My stomach lurched again.

She again asked what I was hoping to achieve with a new pair of AFOs. “I want them to be comfortable and pretty, silly” I said. I sat silently. “I think that you want them to help you be less fatigued and sturdier, more energy efficient” she offered. “Yes” I said. Ok, that sounds good, I thought. I added that I really wanted them to be able to go into a sandal. The plastic ones are so warm, and tight, I repeated. We kept talking, and I realized that it wasn’t just the AFOs I loathed. I’m not a huge fan of shoes in general. Nor am I particularly enamoured with bare feet.  I would live in slippers if I could. Running shoes and closed toe shoes in general I find tight and constrictive, and uncomfortable. After an hour, I just want to rip them off. After more discussion, she finally pointed out, that my complaints were largely neuropathy related and to a lesser degree then, AFO related.

Whhhhaaaat?! I thought. I needed to lay down. This was NOT something I wanted to hear. Ugh. I took a deep breath.  I was suddenly very tired.

We talked a little bit more and she was direct in agreeing when I conceded that maybe I needed to manage my expectations about what I would find, but she was knowledgeable and kind and I didn’t feel rushed.   She agreed that I was still able to function without AFOs and that was probably making it harder for me to give in to getting them. But I was starting to flirt with that line, she suspected. It was a tough spot, she agreed.

I felt deflated, but I also felt like I had gotten the answers I was looking for. If not the ones I wanted.

But DWTS! I thought. Turns out, when they just lop off your legs it is in fact easier for an otherwise healthy body to adapt and excel. A body like mine would continue in some form or another to bitch and complain. My quads were already a little bit weak and caused my left knee to pop back when I walked, she pointed out.

I made an appointment for 2 weeks from then, and said I would call if I changed my mind and didn’t want to go ahead with purchasing them. This would give me some time to confer with my “peeps”, to talk to my insurance company and to figure out the $3000.00 price tag.

I needed a drink cupcake.

Source: "Hostess Cupcakes" posted by Hostess Cupcakes is licensed under CC BY-NC-ND 2.0.

Source: “Hostess Cupcakes” posted by Anna Fischer is licensed under CC BY-NC-ND 2.0.