State of affairs 1-27-13

Okay. Where to start.

I'm feeling a little too restless to describe everything that has happened since my last update so I'll talk about one thing. The biggest thing. The thing that is eating away at me and bringing me to the edge of nervous breakdown. My newly-diagnosed autoimmune disorder.

It started about a year ago. One day, out of the blue, my hands went numb. It started as a sharp pain in my elbows that traveled down to my fingers and gradually my fingers went numb for over four hours. So I went to the doctor. I was diagnosed with carpal tunnel and given medication.
Three months later I went into the doctor's office because I had been getting a rash every day for over a month. The rash wasn't triggered by anything. I would begin to itch and once I started scratching I would break out in small red welts all over my body. It was such a sudden appearance of this symptom that I got worried. Unexplainable rashes mean a newly developed allergy... or an autoimmune disorder. But my doctor just told me it was a condition that people "sometimes develop" when they're allergic to something in the air and their skin starts to break out. She told me to take allergy medication every day. Okay.

About four or five months later the symptoms of (what I believed to be) two unrelated issues were not relenting. I didn't want to go back to that doctor because I felt like she had sort of written me off. So I went to a different primary care physician who actually listened to me and all of my problems. He sent me to a neurologist to get nerve testing done to "make sure" that I was actually dealing with carpal tunnel.
So at the neurologist I spent two ours getting shocked and poked with needles in various spots of my arms (and my legs because he said my feet weren't reacting as they should either). The results were that I didn't have carpal tunnel. My nerves weren't operating properly but it wasn't consistent with carpal tunnel. I'd had whiplash when I was about ten and have had back problems ever since then so he thought I might have a slipped disk or something causing neuropathy (where the nerves are being pressed and therefore loose feeling). So I went to get an MRI on my upper and lower back.

The results were that while I had "bumps" on four of my spinal disks, they weren't bad enough to cause the nerve damage he saw. So he sent me to get a full work-up and also suggested that I might have fibromyalgia.
That was in October. So I did that and I also made an appointment with a rheumatologist. I had  looked up the symptoms of fibromyalgia and they all seemed to fit with problems I had (which I've had for so long I had just stopped complaining about). I went back to my primary care physician a couple of weeks after the blood work and he told me that my ANA tests had come back positive. "That is highly suspicious of lupus" were his exact words. Then he sent me to get a full ANA panel.

So needless to say I went home that day a little shaken. I hadn't even considered the possibility of lupus (I had sort-of thought about it when I was trying to figure out what was causing my rash but I'm a hypochondriac) so this was a slap in the face. All I could do was wait for my appointment with a rheumatologist which wasn't until January seventh (over two months of just waiting). I was scared but deep down I never really believed I had it. I know people with lupus- people who were bedridden and couldn't work and had to take chemotherapy- I wasn't that sick.

My appointment comes around and all I could get from the rheumatologist was "we need to do more blood work" when it came to the possibility. She diagnosed me with fibromyalgia (which at that point was the last thing on my mind) and "unspecified autoimmune disorder" and made a follow up for two weeks later. So that was it. I definitely had an autoimmune disorder but she was hesitant to diagnose me without more information. I should have been grateful but I was more annoyed than anything. I had already been waiting for months. I'd had so many tests and so much blood taken out of me and the worrying was beginning to wear me down. That week I actually had a nervous breakdown at work and started having a panic attack. The same night I went into anaphylactic shock from my dermographism (that rash- at least I had a name for that now). I wanted a diagnosis. I needed to know. I thought that at least knowing would put me at some sort of peace.

I was wrong.

Last Monday I got my diagnosis. It isn't lupus. It's systemic scleroderma. I don't fully understand the disease. I know that instead of flare-ups like lupus the disease just progresses at an unpredictable rate. You never know at what point the symptoms will start to appear. I already have some of them (numb hands/feet, acid reflux, dry/rough patches of skin, dry mouth/eyes, shortness of breath, joint pain) but most of the serious symptoms haven't developed in my yet. They could develop when I'm eighty or they could develop next week. That's the problem with autoimmune disorders. Doctors don't fully understand them yet so it leaves the patients to get caught off guard.

What I do know is that I'm going to build up collagen in my skin and my organs. My skin will get tighter and I'll get weird thick patches of skin. My organs will start to harden. My heart, my lungs, my kidney, my liver- my body will start to attack them and one by one they'll start to shut down. It could happen when I'm eighty or it could happen tomorrow. I'm in the earliest stages of the disease which means that I could have acute kidney failure at any given moment. Scleroderma is such a rare disease that only 2-3 million people in the world have it. Less than half of those have systemic scleroderma. 25 people out of every million get diagnosed each year. I guess I'm one check off of that statistic. There is no treatment for scleroderma. They can only treat the most serious symptoms as they appear. Like other autoimmune diseases... it's just a waiting game.

But beyond all of this the thing that bothers me most is this: Doctors recommend that women not get pregnant in the first three years of their diagnosis because that is when the disease progresses the fastest. Technically I'm not in that stage yet. I don't officially have scleroderma because the more serious symptoms haven't set in yet. They're going to- there's a 100% chance they're going to- but we don't know when. So I have to wait for my "official" diagnosis and then another three years before I have children.
So that could be four years from now or it could be never.

I thought a diagnosis would make me feel better. But autoimmune disorders are full of waiting and not knowing. I have never had much patience for these things. My anxiety has been through the roof. I feel like I have been fighting my entire life. Depression, Anxiety disorder, eating disorders... my whole life my brain has been fighting me and just when I feel like I'm starting to win my body starts to fight me. I'm not really a pessimistic person (or an optimistic one for that matter) but all I can think is "what is the point of me if all I'm going to do is fight?". Is that my purpose? To spend my whole life fighting myself?

I never wanted to be a burden. I watched my brother and my sister (still) drain my mother emotionally and monetarily and I never wanted to do that. I wanted to be the good one who took care of her. But I'm going to be a burden on her. I'm going to be a burden on her and on my husband who never even had a chance to enjoy this. And there's absolutely nothing I can do about it. I think that's the worst, the guilt. I hate being weak. I hate asking for help. But my body isn't going to let me be strong. My body is going to destroy itself. It could be forty years from now or it could be next month. All I can do is wait.