Wednesday, October 26, 2011

Adding to the List

As if Scleroderma and it's plethora of issues and complications, weren't enough to deal with, it now looks like we might be adding another to the list.

Another "my body hates me, Sclero related, autoimmune disease" called dermatomyositis.  It's just a maybe, so, do't be alarmed.  I'm not.  I'm annoyed, but other than that, I'm really not phased.

I've had what I thought was a shit-tastic case of acne for the past 2 weeks.  Even on my eyes.  I thought it was odd.  I've never had bad acne.  Even as a teenager.  I've been fortunate, through everything to have a great complexion.

This week I have an upper respiratory infection and when I went to get it checked out, just to be safe, the doctore noted my skin issues and diagnosed them as a rash and that he thinks its dermatomyositis - or at least Scleroderma related.  He even through out how similar it looks to the rash that patients with Lupus experience.

So, really, who knows.  He was leaning mor towards the myositis, but he's not a specialist.  so, we'll just wait and see what the man has to say about it when we see him next week.

Tuesday, October 18, 2011


November 1st are my 6 month check-ups at Hopkins. I'll see the rheumatologist and most likely have to have a PFT, which I hate. They're just a necessary evil that's a pain in the butt. I don't complain though, that's a test that helps keep Sclero progression in check. All-in-all, none of that bothers me. It is what it is. Aside from the one flare a couple months ago, the fatigue, and damn ulcers, I really am doing great! Those are just so much of my daily life now, that we just make sure they're not out of control and move on. Sometimes, it's about the big picture. The sum of all the parts.

At least most of the time. The ulcers and bent fingers are just more than I foresee myself dealing with for the next 30 years without a decrease in my quality of life. A decrease in my independence. And, well, without going bat-shit crazy. So, I have an appointment with my hand surgeon. He's awesome. He saved my right ring finger from needing to be amputated. He straightened my right pinky, decreasing "bonking" and in turn, no more ulcers on that one. He also amputated my left index finger. At my request. Understanding my reasoning and not treating me like I was crazy.

Now, I'm going to him in hopes of straightening ALL of my fingers, to some degree. By straight, I don't mean, pointing at you straight. They'll likely all end up permanently curved. To what degree, I don't know. Just something better than the permanent fists I'm sporting right now. The middle knuckles will likely be removed and the finger bones fused together (). My other idea is to amputate all my fingers, except my thumbs and get bionic ones. Seriously. There's a company that has bionic fingers. See my older blog posts to check it out. My concern is that the technology isn't what I'd like it to be yet, and I'd end up with really hard to use stubby hands and ZERO functional fingers.

Initially, my idea for this wasn't scary. It was more of a "this shit's broken and here's how we can fix it" approach. Now, the reality is sinking in that, my hands have progressed this way over time. I've learned to adapt slowly. If I do this sort of surgery, it will likely be a hand at a time. I'm going to have to learn things ALL over again. In a hurry.

Granted, there will be no more knuckle ulcers, I'll be able to wear gloves again, hold a glass, etc, but, what things WON'T I be able to do? The list of possibilities swirling in my head are endless and I'm having reservations, but what else is there to do? Cuz, THIS isn't cutting it anymore.

And, I'm NOT ok with that.

Monday, October 17, 2011

Means to an End

I've not posted in a month.  Sorry.  Nothing new to write about, really.  It's been a month of the same.  Sleepless nights, sore ulcers and some aches and pains.  All the norm and stuff I feel I repeatedly complain about.  I'm tired of feeling like all I do is complain.

Today, I have nothing to complain about.

I tried acupuncture for the first time last week.  I have no idea if it's going to do anything, but what do I have to lose?  Except whatever it costs me.  And really, how's that any different than paying for medicines that don't work?  If nothing else, I can say I tried and that I made new friends.  The acupuncturist is a GREAT lady and I am already better for just knowing her.

My sleep has still been off for the last month.  A lot of sleepless nights, filled with "what is my purpose" and "what happens when we die" conversations with myself at 2 a.m.  So, this weekend, I decided to try some melatonin.  I'm either out of my mind or the stuff works!  I slept great the last 2 nights.

Today, I had my echo and there is no change since the last one.  So, the meds are working and keeping my heart happy.  I was having a lot of extra beats today, but that's not new for me.  I don't have to go back for 6 months.  My new cardiologist here in FL is retiring.  I've only been going to him for just a few months and he's leaving.  Which is fine.  I found an internist here that I need to start seeing and she happens to specialize in women's heart disease.  So, I was going to transfer to her if she and I work out well at my first appointment, anyway.

So, finally, things might be falling in to place.  I'm building my medical team here in FL for my day to, frequent needs and then reaching back to Baltimore to my awesome, Scleroderma specialist and team there as necessary and to keep things mainstreamed - for me.

I'm OK with that.