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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?

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?