Looking for Baseline

Looking for Baseline

Well the plan is to start a new medication this fall. Hopefully before Christmas.  If all goes well with insurance maybe even before Thanksgiving.  I will also be taking part in a study.  That means that I will not be taking any medications besides over the counter options.  No problem! 

Oct 11, 2021

Dear Dr. A

I submitted the form online to start the new DMT (disease modifying medication)

I have been feeling a bit better today- About the same as how I felt on Monday of last week.  I haven't fallen and my legs are bothering me but not scary.  The burning is back to just below my knee which is a huge improvement.  Other than severe fatigue, which I am used to coming and going, I feel like I can work tomorrow. 

I have been really trying to relax all weekend and will do the same for the rest of today. 

I guess I am not sure how much better I should be feeling at this point.  

I hope you are having a great holiday weekend,

K

 

Oct 12, 2021

Hi Dr. A. 

So I did pretty much nothing all weekend and felt like I was getting better. 

But now I am only 4 hours into work and the burn is back up my thighs and my legs just feel weak and sore and burning.  My hands feel like I have arthritis.

My right leg is jumping in the last hour (which happened last Thursday too, but then  it was both legs, so improvement Yeah!) 

Overall I'm so tired I could cry. But I slept great all weekend. 

Are oral steroids an option? If not I can come in for an infusion treatment but I think I'll need to find a ride. I don't think I can drive into Boston in traffic.  I am really not sure how much better is good enough. I'm coping and I can work.

Thanks

-K

 

And with that I went back down the rabbit hole which is steroids.  I would love to say that I am looking buff but let's be honest: I look pretty bad these days. 

Parenting on steroids is not easy.  Not sleeping is not easy.  Looking in the mirror is not easy when I am on steroids. 

What I have found is that I need to go to bed when the Mini goes to bed.  This allows me to at least rest for a bit.  As I mention in my post about items for people with MS (link) I use my FitBit to help me relax.  I try to trick it into thinking that I am sleeping.  I figure if I can relax enough for the device to think I am sleeping at least I can help my body heal.  

There are a few reasons I like oral steroids more than IV.  The most important reason is that I don't need to go into the city. I don't have to miss work or rush around in the evening looking for care for the mini.  Steroids will work best to treat your MS flare if you start treatment within 14 days after the symptoms began. I didn't know this because all of my previous exacerbations were manageable.  I rarely have reached out to my care  team about my MS symptoms.  I understood what they were, knew that they didn't warrant steroid treatment and just worked through it. 

Although I have not gotten better from the two courses of steroids I have gotten better at coping with my symptoms.  Here is my approach:

  • I remind myself that I may not get better.  This is not a pity party.  This is a honest reminder that I have to learn to live and parent with my MS symptoms.  I sit, often, and talk to myself about what I have that is great in my life. 
  • I look for work arounds.  I am a big fan of solutions, not problems. I can't do the things that I want with the Mini, okay.  What can I do with her?
  • I have learned to push my self confidence.  I hate my forearm crutches, and I love them.  I don't like the way people look at me when I use them.  I know that so many people don't understand MS and think "Wait she was walking with a cane yesterday, or in her classroom unassisted." This is the curse of MS.  I look fine. I can often walk around my classroom and home, surfing the furniture for stability.  
  • I have to teach my daughter a lot more independence than the average little kid, because I don't know if I will get better. 

I am a warrior.  I will fight this disease, I will manage my disability.  I will be a mother everyday. 


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