Doctor Day Dread

I don’t like “doctor day”.  I have one with my neurologist every six months, at least.  I had one today.  Although she is the best doctor I have ever had, has seen me through some really rough MS transition periods, and I like her as a person, I dread going to see her.  Though I live with MS and all the limitations it enforces daily, seeing a doctor specifically for the disease always brings the horribleness of it to the fore.

Firstly, I drove myself to the appointment, which required two days of vigilant rest in order to scrape enough energy together to do so safely.  I got home completely drained and, six hours later, I’m still sitting in the recliner exhausted.

My walking is worse so I get to go to physical therapy…again.  I’ve had P.T. several times over the last 30 years – something else to drive to.  It’s worth a shot though if they can help fix the hitch in my “get along”, causing pain in my hips and spasms in my legs.  I know I need to work on my balance and coordination, as well.

We discussed my bladder and the medicine change the urologist suggested – it’s always fun to talk about your bladder.  She said she wished there was something to do for the interminable, insufferable MS fatigue but it’s just part of it.  And, despite my trouble walking and the need for a cane, she said I’m lucky to still be able to walk after 30 years.  She said it’s likely due to the fact that I have dauntlessly exercised in some form or fashion nearly every day for the duration of my diagnosis.  Nearly all her other patients have moved to motorized wheelchairs this late in the game.

I’m going to get my next Ocrevus infusion the first of March, Lord willing.  My doctor told me to continue to stay away from people from now until four weeks after I get the medicine, after which it should be safe to get the Covid vaccine (if I can find one available).  As an aside, there was a lot of initial concern over whether Covid vaccines would be safe for people taking immunosuppressant MS drugs.  Thankfully, it has been deemed safe and, though they may blunt the full effect, they still seem to work their magic.

Seeing my neurologist is a reminder of all the fear and uncertainty that surrounds the future living with multiple sclerosis.  I wake up every day wondering what kind of day it will be.  Will I be able to walk?  Am I going to have enough energy to make lunch and dinner?  I try to take it one day at a time, and I usually succeed.  However, when I see the doctor I have to look back over the last six months or year and compare how I am now to how I was then.  The last several years, as the disease has slowly progressed, I see changes that are not pleasant to look at but over which I have no control. 

No one knows what the future holds, I know that.  It may or may not be as bad as I fear it could be.  I pray for a cure.  Realistically, I think they will have to figure out what causes it in the first place before there’s a cure.  It’s hard to win against an unknown, moving target.  So much more is known now than ever before and there are some solid theories about what triggers the onset and drives the progression of MS.  I hope I live to see the day when no one else dreads “doctor day” because of multiple sclerosis.

Taking a Break

I haven’t felt like writing for several weeks now. Although I’ve had numerous ideas and thoughts, none of them have inspired me to pour time into putting them together.

I know I will return to Amy’s Axons with some combination of words and pictures in the near future. Thank you for following my blog and always encouraging me to share a bit of myself in this little corner of cyberspace.

God be with you in this new year.

❤️, Amy