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Julia Will Be Fine

~ An unexpected MS Journey

Julia Will Be Fine

Tag Archives: exercise

Status Update

28 Monday Sep 2015

Posted by juliawillbefine in Daily Life

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Tags

exercise, expectations, future, learning, lesions, ms, multiple sclerosis, new baseline, symptoms, travel

It has been ages since I posted (almost a year – my goodness!) mostly because I’ve been doing well (or well enough) and I’ve been incredibly busy between work and the business and life in general.  I keep intending to return.  So, here I am.  Every thing is much the same as my last writing I believe except that my questionable cervical lesions turned out to be not questionable at all.  I have a lesion at C2 and a small brainstem lesion as well.  How did we find out?  Well, I started having difficulty with my hands for the first time.  Burning that would run from my shoulders down, weakness that would prevent me from opening a jar or can, and cramping in my forearms.  When my forearms get tight, my hands tend to pull in – like I’m making a first – and I have to focus to keep them open.

I visited my MS specialist early this month.  As part of the visit, I asked about my potential for improvement.  He was kind, but told me that it wasn’t likely at this point in treatment and this was probably my new baseline.  I’m two years in, so I knew “better” was not likely, but hearing the words out loud was hard.  Sobering.  He suggested instead that I need to focus on better overall health and exercise to maintain brain volume and to feel better in general.  We had discussed exercise in past and he emphasized that I need to be doing some form of it every. single. day.  (ugh)

Even before this visit I had started walking.  W and I have been going to the hospital up the road from us that has a nice 1 mile path.  It wanders around two ponds and provide sufficient distraction that it doesn’t feel like a chore.  There is even a tree toward the end that always makes me smile.  The location of the hospital used to be a large farm (cows and all).  Very few of the original structures remain, but this one was left alone.  Talk about overcoming adversity.
Tree Overcoming Adversity

And we went to the beach.  I adore walking on the sand and communing with the waves.  We walked six miles one day.  Just came out to the beach, took a left, and walked until we were tired.  Then turned about and came back.

FullSizeRender

We rented chairs on the beach and after our walks, we would sit under the umbrella and watch the waves.

IMG_1434

So, I’ve definitely been trying to get exercise.  I installed the Stepz App on my phone* and I’m tracking what I manage to walk each day.  W pre-paid for 6 months at the Y for both of us so I could start swimming again.  I swam a bit while staying at a hotel in DC recently and it was a good reminder of how much I enjoy it.  Unfortunately, the Y’s pool heater is broken (again) and cold water + my muscles is a very bad mix.  I’m hoping they will be back up and running next week.

W has also been trying to cook as many vegan meals as time allows.  I bought a copy of Thug Kitchen’s cookbook.  Their cookbooks aren’t for everyone (*ahem* let’s just say that they play up the Thug angle quite a bit), but the recipes are amazing.  For anyone who may want to give it a shot: be prepared to spend some time.  W tells me each recipe is taking him an hour or more.  The end result is worth it, but you have to have the time to set aside.

So, we’re moving forward.  I can’t fix the damage that has been done, but I can focus on losing weight and exercising more in hope of feeling better overall.

———————-

*Related note: I would recommend Stepz.  It allows you to put in your height and weight and recommends goals for you each day.  Plus, it calculates your mileage more accurately.  As a vertically challenged individual, five thousand steps for me is not the same distance as five thousand for my husband.

Getting Good News

23 Sunday Mar 2014

Posted by juliawillbefine in Daily Life, Treatment

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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.

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