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Julia Will Be Fine

~ An unexpected MS Journey

Julia Will Be Fine

Monthly Archives: October 2014

It’s All Relative (Literally)

18 Saturday Oct 2014

Posted by juliawillbefine in Daily Life

≈ 1 Comment

Tags

family, funny, ms, multiple sclerosis, perspective

Picture the scene: We’re on vacation.  Dinner for six, outside at a resort in Hilton Head.  Sun and sand.  Warmth.  There have been drinks.  Lots of food.  Dessert and coffee has arrived. The conversation proceeds as follows:

Dear & Loving Mother: “Yuck.  The coffee isn’t hot.  There’s nothing worse than luke-warm coffee after dinner.”

{Insert awkward & overly long pause here}

Sister: “I don’t know….how was that spinal tap Jul?”

It’s all relative, right?  🙂

Celebrating (?) My MS-iversary

15 Wednesday Oct 2014

Posted by juliawillbefine in Daily Life

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Tags

acceptance, anniversary, daily life, ms, multiple sclerosis

On October 15th, 2013 I read my thoracic MRI report: “findings most indicative of multiple sclerosis with an enhancing active demyelinating plaque.”  I still remember sitting in the chair at my parent’s house.  I read it and read it again.  I cried.   This day is seared in my memory as the diagnosis day although I didn’t receive the official call from the neurology office until the 16th.

So much has changed over the last year.  I’ve read a ton.  I’ve absorbed as much information about MS as my brain could seem to take.  I’ve struggled through what this may mean for me in the future.  I’ve come to {mostly} accept the diagnosis.

I wish I were in a place where I could wax poetic about how much meaning the diagnosis has added to my life or how it made me more grateful or more kind and forgiving.  While I’m sure some of that is true, one year in I am still a bit angry and hurt.  I am far from a place of celebration.

Instead, I wanted to come from a place of hope and set some goals for myself for the years ahead:

  • I hope to be able to incorporate my diagnosis into my life without having my life become my diagnosis.  In spite of this blog and the many support groups I am a part of, I hope to retain some sense of non chronic disease normalcy
  • I hope to become settled enough in my diagnosis to understand that there will be good days and bad days and to relish the good days that much more for it
  • I hope to one day feel okay with the fact that parts of my body are not going to behave in quite the way I would like
  • I hope to learn my limitations and then learn how to push them just a little at a time so that I can continue to feel challenged and satisfied with life
  • I hope to be able to serve in some way as a resource/mentor to those who are newly diagnosed.  This kindness has been offered to me by so many wonderful people along the way and paying it forward would be the ultimate reward.

So while I am not celebrating per se, I am doing my best to look back on the past year in as positive of a light as I can currently manage and to look forward with realistic goals for what is to come.

Decisions, Decisions

08 Wednesday Oct 2014

Posted by juliawillbefine in Daily Life

≈ 1 Comment

Tags

autoimmune disease, changing doctors, choosing a doctor, daily life, expectations, ms, MS Specialist, multiple sclerosis, neurologist, spoonie, support

Prednisone induced insomnia gives a girl a lot of time to think.  As I’ve been working through my feelings about my recent experience cheating on my neurologist, I’ve been trying to get myself to a decision about where to go from here.

I prefer to approach problems analytically, so I started trying to break it down in terms of numbers.  Who has been in practice longer?  Who has been specifically focused on MS longer?  How often do they publish?  How often do they appear to speak?  Do they hold positions outside of their practice?  Do they seem to be held in high regard by the community?  Had other patients reviewed them online?  Basically I googled myself silly.  Two tabs, one for each doc, and I went to town.  After a bit I realized just how crazy this was (did I mention that I’ve not been sleeping?).  I can’t quantify my doctor choice based on their Google results.

Instead, I think it comes down to this: the practice I was going to is busy.  Maybe too busy.  They have a huge patient panel and not enough docs & nurses to handle everyone.  Of course, to complicate matters, I just received word through a local support group that the practice has added a new MS Specialist.  Like in the last two weeks.  I’m not sure if that fact would change things for established patients or if the practice would simply take on more new patients then before.  They are a large practice affiliated with a local teaching hospital, so I don’t think there is any shortage of folks trying to get in the door.

Although I loved the MS Specialist I was seeing and the staff in her office and although I was immensely grateful for everything they did for me leading up to and right after diagnosis, my needs have changed over the last year.  Rather than being completely focused on the panic of the new chronic illness and how we treat for the long term, I now need help with managing the day to day-ness of the disease.  I need symptom management.  I need support.  And periodically, I just need someone to tell me that what I’m experiencing is a concern and why.  I don’t want to feel brushed off.  Or that time is only available for patients with more serious issues.  I want those patients to take priority, of course, but I would hope that at some point someone could also get around to addressing what is going on with me.

W is going to attend the next appointment with the new MS Specialist at the end of the month and unless he has any resounding concerns, I think the decision has already been made.

One major decision down, fourteen thousand little ones to go.  Life should get a bit easier now right?

Fun with Prednisone

02 Thursday Oct 2014

Posted by juliawillbefine in Treatment

≈ 6 Comments

Tags

autoimmune disease, daily life, medication, ms, multiple sclerosis, symptoms, treatment

Fun with Prednisone

Although I was treated with IV Steroids last year, the whole experience is a bit of a blur as I was in the midst of being diagnosed two new chronic conditions.  I remember being overly emotional and having trouble sleeping, but that’s about it.

This is the first time I’ve been on high dose oral steroids (200mg tapered over 15 days).  I feel like my insides are buzzing.  I’m having trouble sitting still in spite of my seizing muscles.  And I’m eating.  Like everything.  All the time.  It goes without saying that sleeping has become a bit of a challenge.

Related note: my husband loves it!  The laundry is done, the house has been tidied, blog posts have been written, I reorganized my health binder, and am planning to sort through two boxes of stuff that I have been meaning to get to for about six months.

So apparently my relapse has an upside?  🙂

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