Having gotten such wonderful support from my bloggy fairy godmothers... I think that when I attempt to cook dinner tonight I will get Punky to help me take pictures with the webcam. It's usually a little tricky to hold the laptop in weird angles, but I think it'll be worth it.
Today was a good day. Sure, it's not over yet, but I need a little something to take my mind away from the pain and a bit of blogging just might do the trick. I'll apologize in advance if I take over anyone's reader list with multiple posts. Sorry. Being sick sucks.
In case any of you are wondering what I'm afflicted with, I'll run down the list. I have HMS. Which, rather unfortunately stands for Hypermobility Syndrome, rather than Husband Money Sex. Essentially, my ligaments are made of jello and do very little to keep my joints in place. I dislocate a lot of things, a lot of the time. However, dislocating something isn't really the worst of it. Of course it sucks to have your kneecap suddenly go on strike and dislocate, but the pain of that is very in the moment. It hurts when it pops, and it hurts when it's set. In between, honestly? Not so bad.
No, the sucky part of HMS is the pain when NOTHING is dislocated. I ache virtually every day. I was diagnosed when I was thirteen, and though the painfest wasn't daily back then, it did eventually become so. Rainy days are the worst. When I was a teenager I would scoff at people who said everything hurt worse on account of the weather, I didn't believe in the correlation between muscle, bone and temperature. Boy, am I paying for that now. I used to love walking in the rain, and much of the chagrin of anyone who knew me, I loved climbing trees in the rain and watching the storms above me.
Now I lay very still and wait for it all to go away. If it's one of the few days when I'm not contemplating suicide, I still like to peer out the window at the rain. It's a little bit of a double edged sword though, as it just serves to remind me that I can't be out there walking in it.
Speaking of walking, guess what I can't do a lot of? Sorry. I apologize now if the tone of this gets snappy or mean. Pain comes and goes in waves and at the moment there's little I can do about it. I try not to lash out, but if I'm honest I have admit that I fail at that a lot. Ever had one of those really bad headaches that makes every single thing annoying? That's sort of what it's like. Everything bothers me, the light, the dark, noise, quiet, everything. It is very frustrating, and as I'm always saying, I'm very young. I lack in a lot of things, including the ability to handle this like an adult.
So yes, before I got attitude-y.. Walking. Most days it's a challenge just to be mobile within the walls of my own home. Hence the dieting. It's very hard to maintain healthy weight when mobility is an issue. All the five minute work-outs in the world don't help if my limbs just won't cooperate.
On top of all that, I'm anemic. Annnnd... because I can never do things in half-measures, I'm not just a little anemic, I'm crazy anemic. At my lowest my hemoglobin count was 3.4. I've had doctors roll their eyes when I say this and tell me I couldn't be right, that if my blood was that low I'd be dead. Well, I'm not. Blood tests tend to shut them up. The last one I took though had my hemoglobin count at around 7. Much, much better. The goal number however is 13.
So.. about this hemoglobin stuff though.. it's kinda important. They're red blood cells, and they're supposed to carry oxygen about. Since there's not enough of them to go around, a simple trip to the bathroom or kitchen leaves me winded. Hella frustrating, and, very embarrassing. I can never bump into someone I know in the street and walk with them in the same direction because I can't keep up.
Last, but not least, the anemia has taken its toll on my heart. I haven't heard the final diagnosis on that though. Just that I'm almost always tachycardic, and in heart pain. This part is the scariest to those around me, since usually if you're around me when my heart is working double time you can see/feel it from afar. I can make furniture vibrate to the tune of my heart beat because it's pumping so hard to push the little blood I have around. It does this in my sleep a lot too.
Part of all of this is my fault. I was diagnosed with the HMS at thirteen. I spent three years seeing scores of specialists and surgeons and hospitals and anyone with a degree. That got old fast, so when I turned sixteen I said no more. I was spending more time in hospitals and doctors offices than at home or school. I couldn't deal, and then I had a very bad experience with my pediatrician. A story for another day, or maybe even just another post later today. I went without medical care for the next two and a half years, allowing everything else to crop up on me.
What happened was, I one day went to visit my Aunt and she talked a lot about my seeing a doctor, even offering to go with me. I could write for hours and never fully explain what this particular aunt meant to me, so just take it from me that she was important and when she spoke I listened. Even so, I was a little hesitant. So, she told me a truth I hadn't known. Earlier in the week I had been shopping at a very nice butcher shop in Ritzy Town. My mother ran into me there because she worked in the area. I remember this much. I was picking out meat and fish, and she asked if I was okay. I said I was fine. So, we said our goodbyes so she could get back to work, and she walked off leaving me to finish the shopping. Two minutes later, she came back to my side and asked if I really was okay and did I need help carrying my basket. I reassured her I was fine, and that I could handle the shopping as I did every week. She left again, and I carried on, not thinking much of it.
Apparently, she went to work and called my aunt crying hysterically. She told my aunt that I was going to die. That she'd thought I was just going to keel over right there at the butcher and die, and that secretly she had stayed behind to watch me in case I did.
My aunt told her she'd call me and check me out herself. That was how I eventually met unhelpful doctor number one. Three blood transfusions later, I can no longer just have blood transfused at a hospital. I have to warn doctors to 'wash' it, I believe the term was. An extra procedure that can take an extra day, because my body fights the blood transfusions and I just bleed them out. I am now very paranoid about getting into a car accident.
I quit on doctors again, off and on. Eventually I fall apart enough to have some caring loved one drag me in by my hair caveman style, but I still fight. I hate doctors like most people wouldn't believe. Someday I'll let Punky blog about my latest doctor, whose treatments included printing information from the internet and handing it to me. Ahahaha.. it's a wonder I'm still considered sane.
None of the above is conducive to parenting, but I've become an expert at gritting my teeth and enduring. Mostly, because doctors around here are worried about my age and my liver and therefore won't give me anything for the pain. I'm going to commit suicide someday with the healthiest liver in NYC.
So.. now I'll post this with my head hung in shame, because you'll see the monster I can be and possibly hate me for it.