Tag Archives: daily life

Celebrating (?) My MS-iversary

15 Wednesday Oct 2014

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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.

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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?

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?

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.

How Life Has Changed

21 Saturday Jun 2014

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A disease called Awesome

Back in the day (ie last year), I used to spend time with others talking about a book I’d just read or a movie I watched.  We’d basically talk about meaningless stuff…and at the time it seemed to matter.  W and I used to love to travel to retail shows selling our soap and chat with people spending hours outside.  We would tend the garden or go for walks.

Flash forward to now and I’m amazed at how my life has changed.  I find myself in conversation with folks and I’m not sure what to say.  If they are fellow MS’ers, we chat endlessly about doctor’s appointments, our favorite MRI machines, wait times, new treatments, and infusion centers.  Non MS’ers?  I honestly draw a blank.  I can still chat about whatever TV show I watched recently or book I just read, but my reading list has adjusted to include a few more health-related books then I would like and any TV show discussion tends to morph as health enters the picture as in “well, after my last infusion I was on the couch for two days and watched an entire season of X” (<– insert favorite show here).  I’m afraid to do most retail shows now because I never know when I’m going to hit a certain level of exhaustion that just requires me to stop and I definitely can’t do much outdoors since I have developed the wonderful ability to overheat at a moments notice and tend to have trouble functioning when it happens.

Other-People-in-my-Age-Group

I feel like a person who is losing touch with reality.  Or maybe I feel like those around me have lost touch?  I would like to say that being diagnosed with a chronic illness brought new meaning to my life, and some days I honestly feel that way, but other days I just feel spent and a bit lost.  Like I became old overnight and left all the people my age behind.  I just don’t know how to relate to them in the same way anymore.  It sounds awful (and I promise I am not an awful person), but their complaints about relationships, daily life, and work can make me angry.  They just seem trivial when looked at from a different vantage point.

I know all my anger and frustration has nothing to do with the person doing the talking and everything to do with me and my choice to interpret their words in that way.  I know it is unfair of me and I imagine it is simply my grief once again manifesting itself in my life. I recognize it as something I need to work on and I hope that as I continue to improve illness can take a backseat in my life and I can return to the banter of daily life with a real, legitimate smile on my face.

For others with chronic illnesses who have been through this battle, does it get easier?  Any tricks to that may help to ease me back to the other side?

A New Stage of Denial

03 Saturday May 2014

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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.

 

Working through the Shoulds

22 Saturday Feb 2014

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I am up ridiculously early for me.  My left calf muscle decided, all on its own, to seize this morning just before 5am.  Not just once – which is enough to wake me from a peaceful sleep and send me heart racing as I squirm and try to get it to loosen – but twice.  Just as I was starting to be able to breathe again, and the pain was receding, it came back with a vengeance.  Needless to say, as soon as I was able to walk on it again, I got out of bed.  A bruised, sore feeling and some burning is all that remains of the pain, but there’s no returning to sleep after that.

In my last post I was struggling with the What Ifs and the Shoulds.  Although I felt like I worked through the What Ifs by following them to their conclusion and taking the power out of the fear, the Shoulds were still hanging out there, dangling just above my head.  I used to do a slew of things before some random force outside of my control drew a line in the sand and said “remember the things you did before October of 2013?  Well, you’re not really going to be able to do all those anymore.”  It just seems crazy.  And unfair.    

Why are the Shoulds such an issue for me?  Well, it seems that Should is to black and white, too set in stone.  When you should do something, you either do it (success) or don’t (failure).  There is no room for an in between.  The fact that I can’t work over 40 hours without physical consequences became a failure on my part mainly because of the vocabulary I was choosing to use.

So, how do I combat this?  It seems easy enough once the solution was shared with me – simply replace the word.  As an example:

  • I should be able to swim half of a mile without feeling tired.
  • I would like to be able to swim half of a mile without feeling tired.

See the difference?  This was another enlightening moment for me.  Instead of feeling like a failure, if I swim only a quarter of a mile this week and then I’m tired, that’s okay, but next week I’ll try again.   Now my brain is off and running creating lists of things that I would like to do:

  • I would like to swim at least twice a week
  • I would like to practice yoga at least three times a week
  • I would like to continue blogging/journaling at least once a week
  • I would like to continue working as long as I can manage it
  • I would like to be able to do fun things on the weekend instead of spending it in bed
  • I would like to attend more events (ex: plays, concerts, etc)
  • I would like to travel again

From the mundane daily things to the big life plans, a simple change of words creates an opportunity for the goal/plan to be met halfway and makes the whole experience so much more positive and empowering. 

What to read more?  Other arguments for moving away from the Shoulds:

  1. Psychology Today
  2. Daily Good
  3. Mindful Communication

Battling the What-Ifs and the Shoulds

16 Sunday Feb 2014

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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.