Saturday, September 29, 2012

"You Got to Lose to Know How to Win"

I have had a little over half a dozen trips to Seattle (a four hour drive) over the past few months for a wide variety of appts, tests, and procedures at Virginia Mason.  One time I forced my friend Brad to come with me, and another time my then boyfriend Travis came.  The other times I go alone.  I actually enjoy road trips much more when I'm by myself and sometimes the hospital portion of things is easier solo.  Friday's entire trip was not easy going solo.

Julie had offered to try and free her schedule to come with me and CJ said the same thing, but I feel terrible having my friends take days off work and rearrange their lives just to come with me.  So, I declined them both.  I am fairly strong.  I've been through a lot in my life.  I've been an adult since my parents divorced in fourth grade.  I figured that, just like most of the other appts, I could easily handle it.  I was wrong.

It's been a really emotional past week or two for me.  I cry at the drop of a hat.  Anytime that I spend alone I tend to start thinking...which leads to over thinking...which leads to tears.  Is there an off switch to my brain anywhere?  Now would be the time to let me know if any of you have the answer.

Mix all of the free time that I had, with my two appts and I was a mess.  I held myself together on the way there, but within about half an hour of check-in I had tears.  I was in my first appt with Dr. Stone and we were discussing things.  First thing was that my dermatology office didn't put the rush on my biopsy like they said that they would so we couldn't confirm a dx (diagnosis).  Then they faxed over PA-Davis' chart notes and after Dr. Stone read them, she told me that they aren't sure that it actually is Dermatomyositis.  That brought on the tears.  She quickly explained to me that it is definitely a form of Myositis and we're on the right track.  As soon as the pathology report comes back we'll know for sure.

Apparently the term "Myositis" (which really just means "muscle inflammation" and can be associated with many different things...mine is surely associated with an auto-immune disorder/connective tissue disease) could be compared to a term such as "Infection" in the sense that it's general, and then there are subcategories or different types.  It is determined that I have myositis for sure.  I could have Dermatomyositis, or I have an insanely rare form of myositis that doesn't even have an official name yet.  She explained to me that when testing for things like this through blood work they look for an antibody that your body has created to combat an illness.  Once they find which antibody is present, that tells you which illness your body is combating.  (I think that I'm explaining that least that's how I understand it.)  My body has a PL12 antibody (but not the Jo-1...which is apparently important) that shows up when doing a myositis panel.

**Skipping ahead real quick**  At my second appt Friday with Dr. Gerbino, my Pulmonary Specialist, he tried to explain the same thing to me and told me that he thinks I have the rare, unnamed form of myositis as the rash (I hate that word!) on my chest isn't characteristic of a Dermatomyositis rash.  He wrote down on a piece of paper "Myositis: Anti-Synthetase Antibody Syndrome PL12" and sent it home with me.  Another reason I should have had someone go with me: so they could have paid attention to what he was saying!  All I heard was "extremely rare", "very recently in if you had this panel run five years ago they wouldn't have been able to detect this", and "we don't know what all is associated with it or exactly how to treat it because it's so new and rare".  I also remember him telling me that he wants to see me again in a month to check up on how my breathing is.  Oh, and he said that we're gonna become good friends...monthly appts until my lungs appear stronger and then appts every three months for at least three years to do a Pulmonary Function Test (PFT) and check-in on things.

**Going back to my first appt with Dr. Stone**  After she got me to stop crying, which took a lot of effort because as soon as I started crying she hugged me which made me cry even more, we discussed treatment.  She said that she wanted to start me on a moderate dose of Prednisone, 40mg.  Then she immediately said that I would gain weight.  She said that it'd be in my core and my face.  I expressed to her my deep concern about the weight gain and we weighed ( pun intended!) the emotional damage of taking that high of a dose versus the physical damage of not taking that high of a dose.  We decided (okay, she actually decided with my input) to cut the dose in half and take 20mg of Prednisone daily to begin and supplement that with a drug called Hydroxycholorquine.  She gave me 5mg tablets of Prednisone though so that it will be easy to adjust the dosage if we need to.  I will still gain weight, but hopefully it will be at least a little less than if I were to go on 40mg.

I'm supposed to keep in contact with Dr. Stone weekly to update her on how things are going and if I'm seeing an improvement.  She said that once we find the right dosage, I'll probably be on it for at least two months before she even thinks about trying to taper it down.  She says that while my MRI didn't show significant muscle damage to my thighs yet, my CPK (some enzyme or something in your blood that shows muscle damage to your heart and lungs, I think?) is rising steadily.

I'm getting a headache thinking about it all and I know that I'm fuzzy on a lot of the details.  The jest of it is that I didn't like Friday, I cried a lot, this is frustrating, and I've got many dr visits in my future.  I'm exhausted and heading to bed now.

And, just in case anyone was wondering, I'm now twelve hours into steroids and I have yet to throw anything at anyone.  Disappointing, I know.  (Tami, I'll let you know as soon as I keep those remotes hidden!)

Crap.  I just remembered people like pictures.  Let me go find one...

Hey, look!  It's Tami and I!  Miss Tami and I go way back.  She is self admittedly not someone who deals so well with crying people, but I tell you what, that woman can make me roar with laughter!  In fact, I think she was the only reason I had any laughter at all Friday! 


  1. Nichelle I probably won't have a job for a while so I would be glad to accompany you next time you have an appointment and want some company. I'm great with medical terminology due to being my dad's caregiver after his accident. Love you! <3

  2. What Lindy said! My schedule is fairly flexible and while I can't help with the actual driving part or whatever, I'm a great note taker and excellent company on drives. I enjoy cliche music, singing obnoxiously off key, I also can read out loud for hours and don't get car sick. I'm painfully easy going when it comes to food and have a pretty decent sized bladder (yes, TMI but very important anyhow!) If you need someone to go with you sometime, just let me know!

    Nichelle, you are such an incredible blessing to every single person who knows you. Please don't feel like you're a burden to people. You don't need to be strong all the time, you've been a support to so many- now let us support you when you need it! So seriously, you don't have to go it alone, so many people love you and want to be there for you. Please, PLEASE give me a call if you need someone for an appointment.

  3. I can most likely meet you at your appointment s if you let me know when they are. I will bring Brynn and she will give you lots of hugs and smiles! Also if you are ever need a place to stay you can crash at my place anytime. Stay strong!

  4. I can most likely meet you at your appointment s if you let me know when they are. I will bring Brynn and she will give you lots of hugs and smiles! Also if you are ever need a place to stay you can crash at my place anytime. Stay strong!