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| Venting |
| 06.07.05 (3:05 pm) [edit] |
|
Some of you have heard my mentions of the medical hoops I've been hopping through for the past almost 2 years. Trying to find out what's wrong with me and helping me get approved for disability. First it was my Lupus, then it wasn't my Lupus - the blood work didn't indicate it was in a flare-up despite how cruddy I was feeling. Then it was some rare condition called "Cushings Syndrome". Then it wasn't. My current PCP asked if anyone had ever suggested "Chronic Fatigue Syndrome". Said nope. (I've seen at least 15 specialists in the past 18 months). She did some preliminary testing and suggested that I read up on it. I did and it pretty much described me to a T. The testing for the Epstein-Barr Virus came back positive. There's no direct link b/w the two, but there is some connection. I asked her "what next?" She said I should talk to my Rheumatologist about it. Saw the Rheumatologist this morning. He pissed me off bigtime. I told him that I wanted to explore the possibility that CFS was the cause of my fatigue and memory problems. His reply that it's a 'syndrome' and isn't real. (Isn't AIDS a syndrome?) I laid out my case - because he admitted that my symptoms were 'atypical' of Systemic Lupus and that the severity of the complaints I have don't jive (my word) with the lack of activity with my bloodwork. I told him that apparently it had some validity as Social Security recognized it as a disability. That if he wasn't comfortable in treating or exploring it with me, that perhaps he could refer me to someone who could. He said "I'm not God." I told him that was abundantly clear but I was tired of being tired. I was tired of being told that it was one condition after another. And then he insinuated that it was psycho-somatic due to what went down with "T". I lost it at that point (calmly). I said - you're talking about something that happened less than a month ago where I have been complaining about these symptoms for almost 2 years. ARRRRRRRRRRRRRGH. He said he wanted to get to know me better to make an evaluation and that he'll see me back in 2 months. Fucker. I'm between a rock and a hard place because Social Security doesn't see my Lupus as severe enough to keep me from working but I can't find a doctor that is qualified or willing to explore CFS. So I'm stuck in getting a diagnosis that would free up some income so I could not live wondering where my finances will be coming from each month. I really don't care what I have. As long as someone at this point tells me what I'm dealing with. I'm so sick of being moderately functional 2-3 hours a day. No amount of rest makes me feel decent. I admit that I get so tired of living like this that I've thought of just ending it. I cannot continue it. (Not saying I'm going to go jump off a bridge or anything. I'm so FRUSTRATED. |
posted by: almsthvn (reply)
post date: 06.07.05 (12:36 pm)
The CDC website has links to things that might be helpful for you - support groups, etc.
http://www.cdc.gov/ncidod/diseases/cfs/about/what.htm
I've known one person with CFS and getting diagnosed was the hardest part. Perfect irony, as it required so much effort to diagnose, eh.
posted by: ScubaDiva (reply)
post date: 06.07.05 (12:51 pm)
Reply to: almsthvn
Already familiar with it - signed up for studies, etc. I've gotten information from the organizations and I've read up quite a bit on it.
I'm limited medically with who I can see right now. I'm going to try to see if I can work the system over at Emory Univ. Hospital.
My mother wants to take over but last time that happened...well, the doctor said she wasn't allowed back in the office...
posted by: wiccachicky (reply)
post date: 06.07.05 (1:05 pm)
Check out scholar on google.com. You can find some academic work on CFS. I am not too familiar with it, but I know there are some communication and sociology studies that explore the ways that patients with CFS are mistreated because it is a) a disease that primarily affects women which is why the doctor is telling you it's not a "real" disease, b) there is little terms of social support for this group, and c) it would make sense that a mild bought of depression could amplify the symptoms. That's just my 2 cents.
posted by: Dstar (reply)
post date: 06.07.05 (1:07 pm)
Man, that really sucks. If it makes you feel any better, my finger has been hurting for about two weeks and all of a sudden it doesn't seem like that big of a deal.
On a more serious note, if you ever get to that point where you REALLY feel like ending it all, make sure you tell yourself that you can always do it tomorrow. I think that those thoughts cross our minds whenever things go badly for a while, and it usually isn't anything to worry about. But, I was at the point a few years ago where I was really going to go through with it. My doctor told me two things...First, I wouldn't feel like this forever (my wife told me she didn't love me and bailed), and second, I could always do it tomorrow. Maybe I wasn't as serious about it as I thought I was, but those two things helped me to taking any drastic steps. I know you aren't going to jump off a bridge and that I am probably overly sensitive to those kinds of comments, but you never know.
I wish I had a better doctor I could hook you up with.
posted by: AmyHCAlum (reply)
post date: 06.07.05 (1:44 pm)
I don't have any advice or website to look at, but just wanted to say that I hope you figure out what's going on & can then deal w/ it. Feel for ya babe.
posted by: ScubaDiva (reply)
post date: 06.07.05 (2:35 pm)
Reply to: Dstar
What happened to your finger? Did you stick it somewhere you shouldn't have?
I set myself a date waaaay in the future that I was going to tough it out until then. At that point, I'll re-evaluate things. I lost a friend to suicide and I would never do it casually. And if I ever did - it'd look like an accident.
But relax - I would never act without giving a lot of thought to the situation and the consequences of others.
posted by: ScubaDiva (reply)
post date: 06.07.05 (2:39 pm)
Reply to: wiccachicky
Scholar on google? What's that?
I'm going to do some hunting tomorrow to see if I can find a dr. to help with a referral.
Thanks for the suggestion
posted by: ScubaDiva (reply)
post date: 06.07.05 (2:42 pm)
Reply to: wiccachicky
I figured out the scholar thing - thanks.
posted by: ScubaDiva (reply)
post date: 06.07.05 (2:44 pm)
Reply to: AmyHCAlum
Thanks. I have enough on my plate right now - I could just use a break.
posted by: SweetDiva (reply)
post date: 06.07.05 (3:36 pm)
good luck ma
keep ya in my prayers
ssi is a ..... uggghe bitch
i can't stand they policies....
my son was on it for a little bit, then they took him off....saying he's no longer disabled.
he has a pacemaker and will have it for the REST of his life. but ok whatever...but people can PLAY crazy and get a damn check
i hope you can find a doctor to give you what you need.
bless you
posted by: NurseNancy (reply)
post date: 06.07.05 (7:48 pm)
hope you find someone to help with this. Quite often fibromayalgia and CFS go hand in hand. Damn near impossible to get a diagnosis, and fairly unlikely to get any treatment. Some people have had a moderate amount of success modifying their diets. Eliminating meat, caffeine, nightshade family of veges ( peppers, tomatoes, eggplant etc) only drinking pure corn based bourbon when you have a drink ( no wine or other drinks) eating small amounts of organic fish, rice and lots of vegetables. Only having the occaisonal piece of fruit. Drink a lot of spring water. Try it for a week and see how you feel.
posted by: ScubaDiva (reply)
post date: 06.08.05 (3:20 am)
Reply to: NurseNancy
I cannot live without tomatoes - but I only eat them from my garden from July - September. No tomatoes the rest of the year.
But I will try a bottle of bourbon tonight - we'll see how I feel tomorrow morning. (hehe)
Right now, I just want the diagnosis so I can get approved for disability so I'm not struggling to keep my house.
I've emailed some well-known drs that treat CFS to see if they have a recommendation for someone within the medical system I'm involved with.
posted by: linda (reply)
post date: 06.08.05 (5:32 am)
take care of yourself and good luck with finding a good doctor to help you . I'm in Michigan and I have a few friends that went on disability because of fibromayalgia, there is only one Doctor in our area that sees it as an illness and is able to get people off work because of it. hope you get some relief soon.
posted by: chicalookate (reply)
post date: 06.08.05 (10:33 am)
I was watching Discovery Health the other day and they had a whole show on Medical Mysteries. (One of them was a young girl with Cushings.) Doesn't help, but your post made me think about it. It is so frustrating when you can't figure out what is wrong. Good luck. And maybe you should find another doctor... cause it doesn't sound like the one you have takes you seriously.
posted by: Dstar (reply)
post date: 06.08.05 (1:30 pm)
Reply to: ScubaDiva
My finger was not stuck anywhere it shouldn't be!!! I think I am just suffering from old age creeping up on me. Tendonitis has creeped from my shoulders, to my elbows, and now apparently, my fingers. Wouldn't be a problem except that my job is very physical and requires me to have strength and use of all the above. I thought marrying a young woman would cure me of aging, but it doesn't seem to be working so well.
I did the same thing with setting a date in the future. I was waiting for a life insurance policy to kick in. The truth is, though, now that all that stuff is behind me I am happier than I ever thought I could be (first child born two months ago and looks just like me...as opposed to looking like the guy next door). Had things gone differently I could have never reached this point. Looking back now, things really weren't that bad. Keep your chin up.
posted by: ScubaDiva (reply)
post date: 06.09.05 (5:26 am)
Reply to: Dstar
Is the child looking like you *really* a good thing? LOL
Hope your finger improves, as well as the rest of you. And don't go sticking your finger (or any other pokey sort of thing) in places you shouldn't.
by Redonthehead