Jesus Christ!

I wish I could tell you all about the crazy week I'm having. Unfortunately, I probably shouldn't let anything slip prematurely. None of it is regarding my health (or lack thereof), but just about everything else in my life feels like it's changing every day. Some of it is very good. Some of it is puzzling. Some of it is heart wrenching; a person very close to me has been diagnosed with cancer and is not expected to recover. It's like last week got poured into a martini shaker and mixed thoroughly.

I'll have more to say about all of this cryptic crap as soon as we make some firm decisions and let some people in the real world know about them. Wouldn't want anyone who needs to know to read it here before I have the chance to let them know in person. It's killing me though. I'm a pretty open book and I like it that way, but sometimes I put the cart before the horse and end up embarrassing myself.



I can't even put into words how happy I am with my new rheumatologist. It's like a breath of fresh air after sitting in a smokey room. She spent forty-five minutes with me yesterday, at a follow up visit. I don't know the last time I got more than fifteen minutes of a doctor's time. She went through all of my lab work and the radiologist's report on my CT scan and explained what each test was for and what the results meant. It blew me away. I had no idea what I was missing.

I know that probably sounds odd to anyone who has never really needed to spend more than fifteen minutes with a doctor. I certainly never had more than fifteen minutes worth of stuff to talk to a doctor about before I got sick. If you have an ear infection, a cold, anything else that isn't chronic, there's not all that much to say, but when you have sixteen different blood tests for various antibodies and complment levels and radiologic tests, there's plenty to talk about. It's also awesome to have someone there who will talk out your options, the pros and cons of everything and to formulate a plan for moving forward.

Okay, so enough of my amazement; the results: it's not lupus, it's not scleroderma, it's both, with elements of rheumatoid arthritis as well. Mixed connective tissue disorder, to put a name on it, with prevailing scleroderma. My lungs, well my lungs aren't in great shape. She said we're looking at an autoimmune, inflammatory response that is making my lungs more rigid and the narrowing of my pulmonary arterial vessels which increases the pressure needed to move the blood through my lungs. The two factors combined have cut the amount of oxygen that should be getting into my bloodstream in half. So, we didn't come to any conclusions yesterday, but there are options and both high dose chemotherapy and bone marrow transplant are on the table. She wants me to see a pulmonologist at Thomas Jefferson who specializes in critical lung care in autoimmune diseases and then - get this- they're going to work together to figure out whether things are severe enough to warrant the seriousness, commitment and risks associated with a bone marrow transplant. It's great to have doctors that will be collaborating; as much as my previous doctors have passed on lab reports and office visit summaries to one another, I often feel like a kid passing messages back and forth between divorced parents, and it's aggravating.

So once again the long term plan is blurry and the short term plan is waiting for next month's pulmonologist appointment and increasing the immunosuppressant, azithroprine, that I'm on right now. It's frustrating, but I feel better about it than I did before. I've skipped so many rheumatology appointments because they never gave me any sort of hope, any feeling of progression, or any sense that they we trying to do more than maintaining the status quo. Having doctors that are trying to make things better and are serious about it makes all of the difference. I walk out of the building with a sense of hope and peace and it makes all the difference.


Quick Updates

I have a migraine, so I'll keep it short.

Saw the dermatologist and she's awesome.  Very thorough, very personable, very informative, and didn't make me feel like an idiot.  She says it's not vasculitis, but telangiectasia, what I thought it was initially and a definite indicator that the beast I'm battling in scleroderma.  

There are five diagnostic criteria for what used to be called CREST Syndrome, but is now referred to as limited systemic scleroderma: Calcinosis, Raynaud's, Esophageal dysmotility, Sclerodactyly, and Telangiectasia.  You have to have three out of five for a diagnosis, I have three and a half, no calcinosis and very mild sclerodactyly.  So pending my blood tests results, which I'll get on Wednesday, I should have a diagnosis this week.  

I also got my first disability payment on Friday, which was a huge help, though I didn't get the back pay that I was expecting and I'm going to consult a lawyer about changing the onset-of-disability date.  It's nice to be a contributing member of the household again though.

We spent the day at my dad's today.  We made ice cream with the little man's new ice cream maker/ball.  BF made a great custard and then the kids rolled the ball around for a while and we got to have yummy Burnt Sugar Ice Cream (the sugar is caramelized to just-short of burnt).  We watched the Eagle's game, which was, as usual, a nail biter until the very end, but they won and there will be a game next week, so it ended on an up note.  BF, my brother, two of my step-brothers and I played Risk (BF kicked our butts, but we all held our own for a while) and Killer Bunnies, a great card game (especially when I'm the winner).  It was a really fun night.  

Bella is getting huge, chewing on everything, especially her hands, turning toward voices and her name, and deliberately grasping and pulling objects.  It's so great to get to see her every week and see all of the advances that she makes.  She's far less fussy now and she has a great smile.  I can't see her without hoping that I'll be lucky enough to be able to have one of my own.  Really I'd like two or three more, but BF definitely doesn't and I don't want more than my body could keep up with.  So I'm pretty sure that if we can have any, whether I can physically carry them or not, we'll only be having one.

Wow.  So much for short.  But the last hour and some migraine meds have actually made a major dent in my migraine and I can stand to look at the screen.  Think I'll go work on my book now.  It's the last in a the four book Outlander series by Diana Gabaldon.  It's somewhere between a historical fiction and a romance, but more to the historical fiction side, and being the history geek that I am, these thousand-plus page tomes are right up my alley.  



My brother gave me a ride to get a chest CT this evening.  When we were about four blocks away from being back at my apartment, BF called and told me that I needed to get home right away; there were two envelopes for me from the Social Security Administration and he was desperate to know what was in them.

These people have kept me in this horrible limbo for what seems like an eternity now.  Six and a half months of not knowing what I was going to do about my rapidly deteriorating financial situation.  My car insurance lapsed and I haven't been driving my car for months now, I've filed for several student loan deferrals on the basis of unemployment, and I've been making my minimum monthly credit card payments with the money I got as graduation gifts, which is now down to about $15.  Luckily I have BF, who has been keeping me warm, fed, and under a roof, but our financial situation has been tight to say the least, especially since I lost my student health care and he put me on his plan through work.  

So I let BF open them and he read them to me over the phone.  One was unimportant, but the second letter stated that I had met the medical criteria for disability benefits.  It felt like taking off a lead sweater.  I don't think a day has gone by since May that I didn't have to face the anxiety of not knowing.  It's been a constant low grumbling in the pit of my stomach.  Just not knowing.  What if they denied me?  What if I had to appeal the ruling and spent the next year fighting with the SSA?  What would I do if it ended badly?  All of those questions never quit their nagging.  I feel lighter, giddy.  

It certainly isn't a windfall, the most I've ever made in a year was about $17k and that was one year, by far not the average.  I'll be collecting less than a thousand dollars a month, but that makes all of the difference in my life right now.  With the eight to nine months of back-benefits that I'll be receiving when I start collecting (paper work, payment setup, and administrative BS all stand between me and my first check) I'll be able to pay off all of the credit card debt that I've racked up in the last year and a half and get my car back on the road.  And the payments will be enough that I can pay all of my monthly bills without having to lean on BF quite so much.  


How supremely awesome.

I also have a couple of big doctors appointments coming up in the next few weeks.  Today I had a high resolution chest CT and they gave me a disk with the images, which, while I can't determine their precise reading, are very cool for the girl who wanted to go to med school.  Tomorrow, I take those images and my medical history to a new dermatologist who will be evaluating me for an autoimmune vasculitis.  I'm pretty damn sure that it's going to require more blood tests and a lung biopsy before I have any answers, but it feels good to be taking that first step.  Then next week, I go to see my new rheumatologist again with the results of the massive panel of blood work that she ordered that will tell us which autoantibodies are floating around in me, the radiologist's report on today's CT, and my pulmonary function tests.  Hopefully all of this blood, radiation, and heavy breathing will give her a more clear picture of what's wrong with me.  Then, the following week I see my pulmonologist again and we will once again assess the stage that my pulmonary hypertension is at and what rate it's progressing at.  I wish I could say that with luck things would be looking better by February, but that isn't what I'm expecting or even really looking for at this point.  I just want to be able to confidently put a name on this mysterious convoluted mess of symptoms that I have.  I don't know if you can appreciate the need to know what it is that you have when things are going wrong left and right unless you've experienced it.  The nearest thing I can compare it to is after finals and before you know your grades when that final was the difference between an A and a C.  The scale is still far broader when your dealing with four or five potential diagnoses, each with different treatment options, life spans, mortality rates, and generally run the spectrum for quality of life and possibility of a cure, but, like I said, that's the nearest that I can come.  You just want to know what the future might hold, no matter what the answer.  The powerlessness sucks, but when you know you can take back a little of that powder, by doing further testing, start doing research, exploring your options, taking new medication, it all makes it feel just a little less chaotic, a little less horrifying than when you have no power except to wait.

So I know a lot more today and I'll know a little more tomorrow and by February I should know a lot more and every new piece of knowledge feels like a victory in and of itself.