And sometimes the bottom drops out

[technomage]

I want to tell you a story. It starts with one man with fibromyalgia, and--as the story stands so far--it ends in a little over a week with one family homeless. Unfortunately, the story is in the first person--I am that man.

Fibromyalgia is a disease or disorder that causes the patient to experience constant musculo-skeletal pain. I've had a few people ask me "What does fibromyalgia feel like?" The best way I can explain is to ask them to remember how they felt the last time they were sick with the flu--take away the fever and the difficulty breathing, and that's approximately what it feels like. The muscle aches, the fatigue, the way your brain feels like you can't think, the bowel disturbances (eww, sorry), the way everything feels so heavy--that's the best analogy I can come up with.

Fibromyalgia usually affects women. Only one in nine fibro patients are men, and usually it doesn't hit the guys as hard--but there are exceptions for every rule, and it seems I am one of those exceptions.

Up until November of last year, I worked at our local hospital as part of the Information Systems department. Now, my health does not permit me to work. I can and do walk around the house, but if I need to go anywhere, even up to the mailbox, I normally need an electric wheelchair. The fibromyalgia has affected me to the point that I was unable to continue my job.

I cannot get disability: I have only worked four out of the last ten years. I am extremely limited on the government assistance I can get, as almost everything requires that the person applying for assistance have a minor, dependant child living with them. I have no reserves left--nothing to sell, no one else I can borrow from, no budget to cut. I have no "bootstraps" to pull myself up by.

In Washington, our Congress and President are in a war over what is the best way to help our country recover from the financial nightmare our economy has become. Things are certainly better now than they were when President Obama was elected--but the recovery is stuck in low gear, the Republicans and the Democrats cannot even agree on a budget, and it seems that most of the effort in Congress is expended on defeating the proposals of the other political party, whether or not those proposals have merit.

Away from the capitol, I am told that there are thousands of families in situations like mine. I do not know about "thousands"--I only know about one family.

I am not writing to beg for help, though we desperately need it. Indeed, I do not know that I have purpose in writing, save to document that there are real people out here suffering--a fact that I am certain that you already know.

I am writing not for any real hope of help, but because I have no where else to turn to, and writing is literally all I can do.

[LostSheep]

I've been thinking about you Justin.

[Raphael]

ing for you Technomage.

[mossrose]

Gentle

[One Bad Pig]

for you, Justin.

[Durthorin]

you are in my thoughts and prayers, Technomage.

[moreta]

[technomage]

Today's the day.

We're moving out between today and tomorrow ... and we still do not know where we are going to.

We are not totally without help. We may be able to get help from a local shelter--if that falls through, we have a friend who has offered to house some of us. Either way we must split up the family.

My son will be moving in with his boyfriend in Charlotte, at least temporarily. His daughter (my grand-daughter), our room-mate, and her son will be in a women's shelter here in Rutherford County. And the rest of us will either be in a different shelter here in Rutherford County, or moving out of state.

Our roomate and my son will--probably--be able to get some form of housing assistance. The rest of us will, hopefully, be able to get jobs and get ourselves back up and running, but in the mean time, we are looking at the dissolution of our family.

I've got my blog address in my signature. If anyone has a chance, reads the blog, and wants to help, we are all more than thankful. I will be honest--the last several months have completely soured me on the efficacy of prayer, good thoughts, or hope, but if that is what is offered, we will certainly accept it with profound thanks. If anyone chooses to help financially, please make certain you do NOT compromise your own family budget: I feel like I have already destroyed my own family's finances. I do not want to harm another family.

Thank you.

[LostSheep]

-ing Justin

[Littlejoe]

ing for you TM!

Have your tried hiring a lawyer who specializes in getting disability benefits? I have heard you usually have to threaten to sue to get it done...

[technomage]

Joe, if at all possible, I don't want to go on disability--I want to work. Heck, I HAVE a job starting May 14th, provided I have somewhere to live that I can have internet service set up at. This job pays about half of what my last job paid, but it is a job.

Jobs are as scarce as hen's teeth where I live now, and that's a huge problem. Fundamentally speaking, of the eight people we have in the house, there is one able-bodied person in the lot, and even though he has a bachelors degree, he had to take a job at a grocery store as a stocker.

[headheart]

I am writing not for any real hope of help, but because I have no where else to turn to, and writing is literally all I can do.

Hi Justin,
I was just leaving the forum again and saw your post and have always wondered where you disappeared to.
I've had my fare share of troubles and if there's one thing that is sure about this life it is our shared experience of torments, whatever they may be.
When I had a thrombosis in Dec. 2007 I really thought it was the end for me. You know flying time? Well, instead I found myself surrounded by loving friends far and wide and believe it or not even though I was in hospital miles from my home suddenly people that I'd not seen in years were drawing close and sharing kind words, tender words. Boy did I need them!
I was frightened.
Across the way from me in a hospital bed was a bloke who had been there for quite awhile. He was in a wheel chair too and he explained to me that when he was a young man he'd got a little to wild on a motor bike and the accident had left him crippled form the waist down. He'd come out to South Africa on holiday with friends and had his camera ready to take photographs of the wildlife but suddenly he collapsed and was rushed off to hospital. He was on the mend when I met him, but he'd been through hell.
Well, there I was lying in my bed just being told that if the pills did not work they'd have to replace my heart. Apparently nothing for a doctor to do, but for me it was a terrifying thing to learn. Well, as I lay there sinking deeper and deeper into the hospital bed as a cold sweat of fear gripped me, suddenly there's this bloke with his wheel chair and he asks me if I'd like to come and sit somewhere quiet and talk to him. I did. It was one of the sweetest things anyone could do and he gently reassured me that his sister who'd been in the business of selecting good hearts (her job in the UK once upon a time ago)
I felt more confident and asked him how he makes a living. He laughed and said, 'I'm a gambler' I was stunned. He'd had such a bad deal in life. I mean he was my age and he had had this accident when he was young and spent most of his life on pain medications and whatever and here he was comforting me in my time of distress.
I'll keep you in my prayers, Justin. I've often thought of you to as I know others here have too. I don't want you to think I'm in anyway trying to diminish the awful trial you and your family are going through; I just wanted to write enough for you to know that you are loved and that you are in our thoughts and prayers.

Love,
Eric.

[Cerebrum123]

Technomage, I will be ing for you. I saw that you were diagnosed with fibromyalgia. I have RSD, and it may be possiblethat you do too. My neurologist says that fibromyalgia isn't exactly a real diagnosis of anything, but a label doctors often use when they don't know what a patient has. I only mention this, because it's possible that you have something for which a better treatment might be available. To check if what you have could be RSD (Reflex Sympathetic Dystrophy), I suggest you do some research on it. I would recommend looking at the information that a Dr. Hooshmand was able to compile dur8ng his career. One way that would be easy to test for RSD (and cheap) would be to take a little bit of rubbing alcohol, and rub it on your skin, you then blow on the area. RSD would make it so this test would cause a some pain (I know that that is what you mostly want to avoid, but at least you would have a more definitive diagnosis than fibromyalgia), this little test among others confirmed that I had (and still have) RSD. I know it's not something anyone wants, but it's better than the somewhat mystery diagnosis of fibromyalgia. I am posting from my 3DS right now, so please forgive any mistakes in forming this post.

[technomage]

Hi, Cerebrum,

Yes, RDS is one of the things they looked at--part of what ruled out RDS is the pain is not localised, there are no associated swelling or blood flow changes, and no nerve injury.

"fibromyalgia isn't exactly a real diagnosis of anything"

That was true at one time (and is still largely true), but they are starting to find that there are abnormal values in the cerebro-spinal fluid levels for _some_ cases of fibromyalgia. Unfortunately, there are also a lot of similar conditions that do not have the disorder that very similar symptoms. And they also do not know if the abnormal values are cause or effect.

I do want to update folks: we were able to get into the shelter here in town, which means (at least for the moment) we are not going to have to split up the family. That's to the good. We are still struggling to find jobs for my brother and his wife, and we're still not able to pay for the meds I need, but we will have a roof over our head. It's a step in the right direction ... but we still have so far to go.

[Cerebrum123]

I'm glad to hear that you haven't had to split up your family. I am definitely going to continue to for you and your family. RSD isn't necessarily restricted to one location, but since other symptoms aren't matching up, then it doesn't sound like you have it(my RSD is full body now, so I know a bit about the symptoms.).The problem being is that RSD is so different from patient to patient. My neurologist Dr. Hashmi of Space Coast Neurology, is the best when it comes to RSD, and he also has extensive knowledge of other nervous system conditions. I think that if you emailed him, and explained your condition, then he would do everything he could to help. I don't have his email address on hand, but I can certainly give it to you if you are interested.
By saying that fibromyalgia isn't a proper diagnosis, I was tring to say that, it can often be the case, that if a doctor doesn't exactly know what it is, they then just call the disease fibromyalgia. Now your information above is very interesting. The problem being that since you don't know whether the spinal fluid level is linked to cause, then it makes it harder to understand exactly what needs to be done. Also you don't always have a known nerve injury when dealing with RSD. There are also a great deal of other nerve conditions that we know little about.
I may or may not be able to respond over the next few days. We are travelling back home from a trip for treatments starting on Sunday. In fact I was being treated just today by Dr. Hashmi. When it comes to neurology, he is the best doctor who is currently treating patients. His partner got me out of a wheelchair, but he is now retired. I really hope that your next post has some good news in it.