Tag Archives: autoimmune disease

Decisions, Decisions

08 Wednesday Oct 2014

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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?

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Fun with Prednisone

02 Thursday Oct 2014

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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?  🙂

The other leg was jealous?

22 Monday Sep 2014

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Since the beginning of my MS journey, I’ve always had trouble with my left leg.  I periodically “lose” it (it just goes numb and seems to disappear), or I get pins and needles, or (my favorite!) I get burning pain that can impact my toes, my leg, my hip, and sometimes all of it.

In late July I was in bed one night and realized that I had no feeling on the top of my big toe.  My RIGHT big toe.  I decided to approach it in as zen-like a state as I could and just shrugged and thought maybe it was the new shoes I had bought recently.  The numbness continued and started to move slightly so that it was numb around the nail bed and a bit along the inside of the toe.  I stopped wearing the shoes for four days.  No change.  Still, I refused to panic – typically my go to response.  I decided to monitor it to make sure it didn’t spread and to move on with life.  I mean, it’s just the big toe right?

The following three weeks were pretty stressful.  I had a few crazy days at work and wasn’t sleeping much.  I spent a bit too much time in a very hot building and noticed afterward that both feet were completely numb instead of just the left.

I stood up one day at home shortly afterward and started to fall.  My right foot had basically turned outward somehow without me noticing that it wasn’t holding me up.  This happened a few more times.  I started walking slower and focusing on my gait again and paying attention to the right foot to avoid walking on the side of it.  I tried my best to adjust, but it was challenging.  One of the docs showed me some exercises that would help to strengthen the muscle on the right side of the right foot which seemed inexplicably weaker then my usually troublesome left side.  I even woke up one morning early when my right calf muscle seized (this feeling may go down as one of the worst ways to wake from a deep sleep).

At this point I thought it may be good to get a neurologist involved.  Clearly the problem wasn’t just going away.  I called my local doc who was out of town and his assistant recommended that I call the MS Specialist.  They ordered some lab work and we waited for the result.

So, it turns mild UTI that I’ve had for ages has become significantly worse.  Apparently it is fairly common in MS to have UTIs.  I’ve had no symptoms that would make me think of that possibility.  I also understand the lack of symptoms to be a fairly common occurrence when patients have spinal lesions.

Long story short, I’m on an antibiotic and am anxious to see if the feeling returns in my right big toe once the infection is under control.   As stated in the article linked above: “A person with a UTI may experience a pseudo-exacerbation. Although no underlying disease activity exists, the infection and accompanying elevation in body temperature may cause other MS symptoms to flare up temporarily. Once the UTI is treated, however, these symptoms should subside.”

We’ll chalk this up to yet another learning experience?

…oh the symptoms

14 Monday Jul 2014

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There really should be awards for getting out of bed

My pain is increasing as of late.  Not entirely sure why.  Honestly, I don’t think I’ve had MS long enough to be able to say.  It may be the crazy heat/humidity we’re experiencing, it may be that I have a small virus.  It may be the after effects of the Rituxan, or it may just be the ebb and flow of the disease process to which I am still adjusting.

I became keenly aware of it over the last two weeks.  At first it started with the numbness in my left foot returning.  It’s not necessarily an unpleasant feeling, just very strange and off putting – it has been ages since that symptom bothered me.  I tried shifting in my chair at work.  I tried getting up and walking around thinking it was just asleep for whatever reason.  Nope.  It was just numb again.  I had to remove my shoe as the tightness was bothersome (odd, I know), but I just tucked my shoe-less foot under my desk and finished the day.

I am intimately familiar with what happens next from prior experience. After the numbness comes the pain and I spend my time wishing the numbness would return.  It starts at my left hip and travels down to the numb foot.  Then the muscle cramps start in the left calf.  Sometimes I get an involuntary twitch in my left foot.  I just kick for no good reason.  Finally, my muscles all over get tight – shoulders, back, etc.  Everything feels “off” and just uncomfortable.  I can get through the work day okay, maybe because I’m distracted, maybe because I’m up and moving around.  It gets worse as soon as I sit down at night and the pain increases the later it gets.  By the time I am ready for bed, it is beyond aggravating and I can’t sleep.  I’ll lay in bed and try to read.  I lay on one side and then the other.  I’ll try my back.  Nothing is comfortable at that point.  I am a girl who needs her sleep and this is when the frustration really sets in.

To compensate for the pain, I upped my Gabapentin.  Not a problem, except that I wake up groggy (read: drunk) in the morning.  At least I am able to sleep.  One night I had to up both the Gabapentin and the Klonopin as I was laying in bed and could feel the muscles contracting in my calf and the foot twitching.  Again, slept wonderfully, but woke up and wasn’t able to function well in the morning.  Not great when I have to drive 30 mins to work.  Obviously increasing the meds is not good solutions for me.

Since I don’t know why this is happening, I can only try different things and see what works.  I am trying to be more careful about my diet and am wondering if my stomach symptoms can be tied to the MS symptoms.  I am taking the meds earlier in the evening hoping that I can sleep longer and wake up able to function. I also decided that I need to swim again.  Pain or no pain, I think it is the only way I’m going to feel better long term.

With that in mind, I swam three times this week.  Short visits each time, but I was happy with the effort and glad that I did it.  I always forget how much I like being in the water.  By the time I finish, I’ve “lost” my whole left foot (can make getting out of the pool challenging), but it’s worth it.  I am also committing to more yoga practice.  I’m crossing my fingers that between the two, some of this pain resolves and I am able to concentrate on life again.

My heart goes out to anyone who experiences chronic pain.  I’m a few weeks in and already feeling a bit nutty.  I want to feel better and I want to sleep, but I don’t want to drug myself to get there.  I am always open to suggestions – do others have ideas of battling chronic pain while maintaining your sanity?

Spoonie Life

03 Thursday Jul 2014

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Autoimmune Disease SnarkECard

For those who are healthy, the word “spoons” may mean little more than something you use to eat your cereal.  For chronic illness sufferers, it has a special place in our hearts thanks to Christine Miserandino from But You Don’t Look Sick.  Christine has Lupus and was faced with the challenge of trying to explain how her illness makes her feel to a friend.  Although written for her specific situation, the story has clear applications for anyone with Chronic Illnesses and has been picked up by the community as a whole.  Please take a few minutes to read Christine’s Spoon Theory.  It is a few pages long, but I promise it is worth the time.

I remember first coming across Christine’s story online and it was like a light bulb for me.  I was so excited to read it and to have a great way to try to explain how my day to day life had shifted to my family & friends.  Christine’s words speak so clearly to so many people that it has literally become a pervasive reference among those who are chronically ill.  So much so, that you can do a #spoonie search on Twitter and come up with pages and pages of results.  You can find results via Google, on Pinterest, Tumbler and Instagram – anywhere a spoonie may choose to express themselves, you’ll find the tag.

As it is alluded to in the name of Christine’s site, many auto-immune diseases are Invisible Illnesses and those diagnosed won’t appear sick, but inside they are often battling with some form of pain and fatigue.   Although I firmly believe that most of those with a chronic illness don’t want or seek other’s pity or sympathy, I think the Spoon Theory can aid in bridging the gap between the chronically ill and the healthy, providing much greater understanding and helping everyone to take advantage of the remarkable power of empathy.