• About

Julia Will Be Fine

~ An unexpected MS Journey

Julia Will Be Fine

Tag Archives: lesions

Status Update

28 Monday Sep 2015

Posted by juliawillbefine in Daily Life

≈ Leave a comment

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.

A New Hurdle

05 Wednesday Feb 2014

Posted by juliawillbefine in Daily Life

≈ Leave a comment

Tags

lesions, mri, mri results, ms, multiple sclerosis

In early January after a month or so of feeling quite good, I started to have an increase in my symptoms.  My hip pain came back with a vengence and the burning pain at night was going from the heel of my left foot all the way up.  I was taking a much higher dose of gabapentin then normal just to be able to sleep and the pain was unrelenting.

At the same time, I noticed that I felt stiff during the day and started having trouble walking again.  My leg was heavy and I felt like it was vibrating (for lack of a better way to put it).  The muscles started cramping again at night and my fatigue during the day began again in earnest and I would “crash” around 3 – 4pm.

I thought maybe I had developed a UTI as I also noticed increased frequency, but I went to my gynecologist and the culture came back negative.  I didn’t feel like I was getting sick and I had been checking my temperature daily, but was not running a fever.

After a week or so of this, I finally called one of the MS nurses to ask for advice.  She called me back and asked me to come for an appointment.  My husband and I discussed it with the MS specialist in detail and she felt that what I was experiencing was most likely due to the prior spinal cord damage.  She suggested an MRI was the only way to know for sure, although she wasn’t expecting to find anything.  I agreed to go as I hoped it would put my mind at ease.

To my surprise, I received a call early the morning after the MRI from one of the MS nurses telling me that there was a new lesion on the MRI report, but that the MS Specialist was only able to see it on one sequence (I took this to mean it was small), but that my other lesions had improved.  They offered me steroids, but said they didn’t think it was 100% necessary.  I declined as they made me feel so awful last time and I figured we were so many weeks into this that I should be able to make it through.  I have not yet seen the MS Specialist to discuss the MRI although I am supposed to get an appointment in March (I’m waiting for a call with the date).

I’m unsure if my most recent experience was a relapse, but it stirred up a whole mess of questions and emotions that I had thought were somewhat settled in my mind.  I’ve spent a lot of time since worrying and crying.  I don’t know if it is normal to have a new lesion (even a small one) this soon after treatment.  I don’t know if this speaks to future disease progression.  Or maybe it means nothing?  I find the whole experience has left me feeling remarkably disturbed and seems to have set me back significantly in the acceptance process.

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

Create a free website or 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
 

Loading Comments...