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Julia Will Be Fine

~ An unexpected MS Journey

Julia Will Be Fine

Tag Archives: future

Status Update

28 Monday Sep 2015

Posted by juliawillbefine in Daily Life

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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.

A New Stage of Denial

03 Saturday May 2014

Posted by juliawillbefine in Daily Life

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acceptance, daily life, future, learning, ms, multiple sclerosis

I’ve hit a funny place mentally with MS.  This is going to sound very weird to anyone who does not have the disease, but I feel pretty good overall and it is strange.  I imagine this means I have officially hit the remission period that is referred to in the name Relapsing Remitting.  That’s great news overall.  It means that I’m exercising, that my pain has diminished enough that I’m only taking meds at night and a lower dose then I was recently.  It means that I don’t feel like I need to sleep through every weekend just to recover from the week before.  I finally find myself forgetting that I have MS.  Although it plays a major role in my life, I’m finally able to focus on other things.

But all this also means that I hear that lovely little voice in my head piping up again and I find myself asking a million questions.  Maybe the disease wasn’t as aggressive as we originally thought?  Maybe I don’t need to continue my Rituxan therapy?  Maybe this will be how I’ll feel from now on?  And, my personal favorite: maybe I don’t really have MS?  Maybe the well-educated, incredibly knowledgeable doctors were all wrong?

I’m quite familiar with the little voice in my head that likes to send me down anxiety-ridden paths.  I am also realistic.  The reality is that I have amazing doctors and the Rituxan is doing its job.  It has halted the disease process.  My body is focused on healing instead of attacked itself.  I am swimming more which helps to continue reducing my pain levels and also helps to minimize the fatigue.  Things are good.  Rather than allowing myself to enter a new stage of denial, I need to enjoy and celebrate this period of remission and recognize it for what it is.

 

Battling the What-Ifs and the Shoulds

16 Sunday Feb 2014

Posted by juliawillbefine in Daily Life

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acceptance, daily life, expectations, future, ms, multiple sclerosis, should, what if

My recent mental craziness centers around two types of problems: the What-Ifs and the Shoulds.  As an explanation, for the last however many weeks since my upsetting MRI, I’ve been playing a not so fun game in my head that goes something like this:

  • What if I wake up and can’t feel my legs or arms?
  • What if I am confined to a wheelchair?
  • What if I start to experience cognitive decline?
  • What if I can’t keep doing my job?
  • What if I get to the point where I can’t work at all?

These panicky questions are often followed by or related to a series of self criticisms:

  • I should have been able to work over 40 hours this week without feeling exhausted
  • I should be able to work during the week and still do fun things on the weekend
  • I should have been able to walk the loop at the park without my ankle locking up
  • I should have been able to swim for more than a half mile before feeling tired

Basically, my brain is running through all my current fears about my disease.  I am a control-oriented person and this disease has removed a large part of that control from my life.  It has also caused me to re-think my definition of myself and my expectations.  I used to be someone who loved to work.  Stressful situations energized me, long hours didn’t faze me, and I always knew I could push myself a little harder.  That is clearly no longer the case.

I could feel myself getting more and more sad as these thoughts ran through my brain and I knew it was counter productive.  So, recently my husband and I sat down and talked through my fears:

  • What if I wake up and can’t feel my legs or arms? – We would go to the hospital.  We talked through which hospital and who would be notified.
  • What if I am confined to a wheelchair? – We live in a single story home, so although there would need to be changes, they wouldn’t be too extreme and we discussed the few updates that would be needed.
  • What if I start to experience cognitive decline? – I joined Lumosity shortly after my diagnosis.  Right now I have only one brain lesion.  My hope is that the lesions will stay minimal and if I continue playing Lumosity daily, I would (in theory) be able to notice a downward trend very early & discuss it with my doctor.
  • What if I can’t keep doing my job? – We discussed the possibility of me working limited hours or working one day a week from home to try to continue in my current position as long as possible.
  • What if I get to the point where I can’t work at all? – This would be a worst case scenario for me as I have realized that much of myself is wrapped up in my job and doing that well.  All the same, we looked at a budget and talked about what it would mean to us financially for me not to work.

Although the conversation was uncomfortable, in a short time we were able to talk through each of the large concerns I have and come up with rudimentary plans or at least early thoughts for each.  It doesn’t change my level of control, but makes me feel more confident that if any of those situations presented themselves, we would manage to work our way through it.

So, I’m left with the Shoulds and I’m still not entirely sure how to handle them.  I am setting up expectations for myself that are not necessarily realistic and I need to come to terms with that.  I am very afraid that I will switch from the woman who worked full time, got a masters degree and simultaneously started a home based business to a woman who sits at home and complains about what she can no longer do.  Instead of thinking about those fears, I need to try to refocus on little victories.  Every day that I manage to go swimming or do yoga should be a considered a success regardless of the distance or time.  Every day that I work, even a short day, is a good day.  If we manage to do one fun thing every weekend, that should be something to celebrate even if it means that one day a week is spent resting just at home.

I imagine this is all part of acceptance and I’ll get there with time, but it is still a frightening journey.

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