• About

Julia Will Be Fine

~ An unexpected MS Journey

Julia Will Be Fine

Monthly Archives: March 2014

Well, it happened

30 Sunday Mar 2014

Posted by juliawillbefine in Daily Life

≈ Leave a comment

Tags

disability, handicap, handicap parking, multiple sclerosis

…and I’m a bit upset by it although I expect I shouldn’t be.

We’re still on vacation and in a big-o rental car.  Today W and I wandered off by ourselves to go to a movie.  Earlier this morning I had gone swimming and did my goal of 1/3 mile (hoping to increase that soon) and after breakfast, we walked around the marina looking at the boats and the fish.  Our plan was to head to an early movie and by the time we were ready to go, I was already tired and my muscles in the left leg were protesting a bit.

When we arrived at the movie theater there were four handicap spots available, so we grabbed one.  It’s not something I do often as I really don’t like getting looks from people when I use my placard, but W suggested it was a good idea considering how much activity I had already participated in that morning.

Anyway, we saw the movie and enjoyed it.  All was well.  After exiting the theater we went to get in the car and the gentleman next to us was helping his wife from a wheelchair into their car.  He was making noises in our direction, rolling his eyes, and just generally looking irritated.  I scooted lower in the car and waited for W to pull out.  Instead, he hopped out of the car and walked over to the man to ask if there was a problem.  I didn’t hear much of the conversation (I started crying shortly after this started out of frustration, irritation, and just general exhaustion).  The gist I got from W was that the guy basically asked if he was handicap and expressed irritation that people were getting and using placards that clearly did not need them.  Wayne explained (as calmly as he could) that I was newly diagnosed with MS.  He went on to explain that I had been very active that morning and we were concerned about pushing my activity too far.  The other guy said his wife had MS as well and was secondary progressive.  W says that he tried to get the guy to admit that he shouldn’t be quite so judgmental especially considering that his wife may have had invisible symptoms early on, but he was basically not listening.  We got the impression that a) it is possible that for him disability = wheelchair, b) he had been in many situations where there were no handicap spots and c) he may have been frustrated with the general state of life due to his wife’s condition.  For the record, she stayed silent the whole time.  I did as well until the end when I said (through tears)  and I had a spinal lesion and had ongoing trouble with me leg and that he should trust me, that this is the last position I want to be in.

It took me quite some time to calm down after the encounter.  W was angry.  I was sad, frustrated, and just generally overwhelmed.  Before I was diagnosed, I imagine I judged folks who didn’t look like they were having trouble but that used a handicap sticker or were on disability.  I can’t imagine doing that now and I don’t understand how someone in his position could continue to do that knowing what it means to have MS and how, sometimes, a walk through a parking lot can be just a bit too much.

Getting Good News

23 Sunday Mar 2014

Posted by juliawillbefine in Daily Life, Treatment

≈ Leave a comment

Tags

exercise, ms, multiple sclerosis, pain control, rituxamab, rituxan, treatment

Since mid October it has felt like every doctor’s visit was a dread-filled experience.  I left each feeling despondent and generally depressed.  For the first time, I got good news and I was honestly unsure how to process it.

W and I went for a three month Rituxan follow-up with the MS specialist.  I had an MRI that I was quite concerned about since the report showed a lesion at T2 that had not previously been present.  The neurologist sat down with us and the MRIs, pulled up the old scans and the new and told us that she didn’t believe there was a lesion at T2.  She could see it only on one sequence, so her guess is that it may be an artifact or something else, but if it were a true lesion, it would be more visible that it was.

That alone produced a huge sigh of relief from me.  Several weeks of mental anguish turned into nothing with a few words from the doc.  As if that wasn’t enough, she went on to say that she believe I didn’t originally have one long lesion as we had understood, but quite possible two smaller lesions and that both were improving.  Yep, improving lesions.  It was something that had been cautiously mentioned as a possibility early on when I started treatment, but we were warned numerous times that it may not happen.  So, in short, the Rituxan is doing its job.  It stopped the disease process and allowed my body the chance to begin to heal itself.  Kind of amazing if you think about it.

To add icing on the proverbial cake, my CD20 count is still negative.  That means that the Rituxan is not only doing its job, but it is lasting in my system meaning that I won’t have to treat again until June.

Of course, the little part in my brain immediately started talking to me and warned that I shouldn’t get too excited or too comfortable as the MS can rear its head anytime, but the doc shared with W & I that in clinical trials 90+% of patients didn’t experience a relapse if their B cells were kept in check.

I did ask about pain & fatigue control and was told “exercise, exercise, exercise.”  Per the doc, exercise helps pain control in all cases except traumatic injury.  That was new knowledge for me and pushed me back to the Y to take on swimming again.

So at this point I am focusing on staying positive, trying to be healthier, and hoping that my symptoms will begin to improve as my body continues to try to repair the existing damage.

Subscribe

  • Entries (RSS)
  • Comments (RSS)

Archives

  • October 2015
  • September 2015
  • October 2014
  • September 2014
  • August 2014
  • July 2014
  • June 2014
  • May 2014
  • April 2014
  • March 2014
  • February 2014
  • January 2014

Categories

  • Daily Life
  • Diagnosis
    • The Beginning
  • Education
  • Treatment

Meta

  • Register
  • Log in

Blog at WordPress.com.

Privacy & Cookies: This site uses cookies. By continuing to use this website, you agree to their use.
To find out more, including how to control cookies, see here: Cookie Policy
  • Follow Following
    • Julia Will Be Fine
    • Join 39 other followers
    • Already have a WordPress.com account? Log in now.
    • Julia Will Be Fine
    • Customize
    • Follow Following
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar