Things aren’t going so well. It’s getting harder to think. Earlier today, I was trying to explain something to Max, but it was like my brain infection was back – I could think of the words I wanted to say, but I literally couldn’t move my mouth to say them. Or other times, I’d know the word, just not find the right way to end it. Like the word “communist”, I couldn’t find the right ending to it. I kept getting it wrong while trying to explain the Korean War to Max. What should have taken two sentences took forever. In the end, he (very politely) asked if I’d ever had any kind of grammar classes, cause even he noticed how convoluted and messed up my sentences were. I had to explain to my 8-year-old nephew that my brain wasn’t working properly and I didn’t know why.
I don’t feel like me anymore. It’s so hard to talk. So hard to do anything. It’s even hard to breathe, because I just weigh so much that it’s exhausting just to move my chest in and out. I’ve been alone up here in my room for so long that I’m forgetting how to talk. I’ve even started stuttering a little.
And still no one knows what’s happening to me. I’m so tired, so very tired. I’m so tired of all the tests coming back without answers. I don’t even find any hope in them anymore.
I did just a bit more research this past week, trying to figure out what the hell is going wrong with my body. I did find out that there’s a form of cancer that could be causing this. That’s always fun to find out. Although I must admit, for a while now, I’ve been slightly jealous of people with cancer. I know that sounds funny, but when you’re as sick as somebody with cancer, and yet people don’t realize you’re that sick, it gets really cumbersome. Scratch that, it’s damn frustrating. I’ve often wished that when people ask me what’s wrong, I had a simple answer to give them that not only would they basically understand the situation, but they’d also realize just how shitty of a situation it is. Also, when you go to see a doctor and say that you have cancer, they actually know what the hell to do with you, rather than just looking at you with this blank look on their faces that – roughly translated – means, “Oh shit, they so didn’t train me for this in medical school…”
With cancer, there are support groups. There are people who not only know what you’re going through, they’ve gone through it too. You can wear pretty ribbons, a color for every variation. There’s nothing like that for this. Nothing for Dercum’s, nothing for whatever it is that’s killing me right now. Nothing. Not even enough science to explain it. I don’t get a ribbon and I sure as hell don’t get any answers.
I want to travel. I want to see Australia, New Zealand, Japan, India, the Galapagos Islands. I want to go to Courtauld, to Stanford. I want to go on a normal date like a normal person. I want to get married. I want to be able to have babies. I want to wear real clothes. I want to be able to walk. I want someone to tell me why my pulse is racing whenever I move. I want someone to tell me why my body’s gotten so big, distorted, and discolored. I want someone to be able to fix it.
I know the numbers for my blog are going down. I don’t blame you. I’m sorry, I know I used to be spunky or funny or whatever. I’ve tried, I just can’t do it anymore. I’m sorry.
You can count on me to keep reading and sometimes commenting on your blog. This is the way you can communictae with the world. If speech is slower or you can’t find the right word, writing it out means it’s invisible. If walking is painful, your whole body can stay in one place when you write. Please continue to recognize your stengths.
I know we haven’t talked much lately and I miss you. I’m sorry things just keep getting worse and worse without any reason. If there is something, anything, that I can do for you that would help you even the slightest bit, please just let me know. I know there really isn’t any comfort anyone can give you, but just remember that you do have people–friends and family–who love and care for you very deeply.
I’m always here and I keep you in my thoughts. <3
And one more thing. It’s true that there are support groups for cancer and other ‘famous’ diseases. Talking or only listening to someone in person, a few feet away, is invaluable. To know and feel everyone in the room has experienced your own problem is enpowering. You have the ‘next best thing’. We will never meet in person. I do not have the same disease as you. I can hear.
hey hunny
its amber from top if u remember^^
i still cheering for u and love u deeply
hope all is ok and i will always think of u as my mentor and my big sis heathychan
i still reading here like always and i will forever^^
i love u heather now and forever
Amber the emo queen^^<3
Heather, have you already checked out or maybe are part of clinical trials about Dercum’s disease? I think folks like yourself form an automatic support system when they become involved in that. Even though the disease is chronic and progressive, the treatment focus seems to be on controlling symptoms of pain, extreme weakness / fatigue and weight gain. Please at least check out the site ClinicalTrials.gov. It’s the registry of federal and privately funded research.
hey you seem like a really interesting person.
I agree with another comment above, you should focus on your strengths at this point. I can tell that you have many of them. Just keep fighting.
~softpinkcheeks
Hi there – I just thought I’d leave you a comment so that you know I am here, reading and I care. I may be a bit behind with my reading and for that I apologise. I have my own health ‘issues’ – multiple sclerosis (silver ribbon) and am being investigated for others – maybe conjestive heart failure. I just thought that I’d add that I understand that long haul to diagnosis (in my case from the age of nine until I was 30) and the relief when you FINALLY get a firm diagnosis / label that you can tell to people as some small proof that you are not a malingering hypochondriac. Read more here:
http://natalief.livejournal.com/1002896.html
*hugs*