just me and how i feel

I know I have been dealing with this aweful afficition my whole life...... For me it gets worse every year......But i also have undo stress in my life brought on by the social security administration......That is another story though......When I was just four years old too far back for me to remember......I was walking with one of my aunts and as she tells the story I just fell over in pain......She picked me up and carried me home..........I honestly believe that was the first time fibromyalgia reared its ugly head in my life..........Then throughout my life there were times when the pain would be so bad it would bring me to my knees.......Now adays I cant put my socks on without coming up with a plan of action as to how best achieve this FEET....lol i made a funnny......without causing myself undo pain to my person.........I am 34 oops 35 years old and I know for a fact that I have continued to get worse throughout my life and i dont know it was due to my high impact lifestyle or what it was.....I played football in highschool. I worked construction from the age 12 untill i was 29 and I never caught on why it was that i called into work more than the fellas who partied and got drunk all the time......... It was always the same thing I couldnt get out of bed......Some folks I worked for understood and others didnt but Then i just said the hell with it and went into buisness for myself...... that lasted four years and about 200,000 paid into social security......thank god I was making really good money and then in 2002 it just stopped i spent about two months where the pain was so bad I couldnt get out of bed for more than ten to fifteen mins to a time........I had to hire someone else to finnish a house for me and that led to my financial downfall as after I was well enough to stand on my own two feet the house was in such a terrrible state that it took almost all of my savings to make it right with the folks i was building it for............After that episode i may have earned 2 to 3 thousand in 2003 and I couldnt do anything anymore......I was still under the assumption that it was arthritis in my lower back that was causing all this pain..........So I figured a change of weather was in order 2004 rolled around and i pushed myself through a summer of paving the highways of Maine..............That about killed me...........Then in the fall there were a bunch of hurricanes in florida..........Idea head to florida and help with hurricane repair...........No help Pain still as bad as it is in maine......I last three months.........That is the last time I worked for more than One week in a row.........As of 2008 I have not worked one day and earned any money.......For someone with my upbringing that is unacceptable.........So I finnaly get me some medicaid in 2007 and I go see a doctor......He tells me guess what "its all in your head" ok maybe there is alot that goes on in my head........Try to work and do other things NOPE cant sorry.......Then i keep an appointment with Doctor I made before i saw first doctor.......He tells me "myofacial pain" here i am thinking he is telling me "its all in my head" nope he is basically telling me fibromyalgia,,,,but where he is no expert he refers me to pain specialist that i picked out before hand and finnally pain specialist or physiatrist tells me "fibromyalgia" amen bout time thank god......That was back in 2007 so now I think very foolishly that I will have ssdi by the end of the year hahahahahahahahahahahahahahahahahahahahahaha as I still dont have any income of any kind...........since then i have spent time in the hospital with blood clots in my legs and abdomin....... which i believe was caused by my fibro but nobody believes me....u see when i do too much my muscles constrict alot and i believe the muscles in my legs tightened up to the point of cutting offf blood flow and causing the clots but that is one theory I dont want to test.......There for since Christmas of 2008 I have not worked one single day nor will I the last time I did I ended up in the hospital for two weeks and the damed asses almost killed me while I was there.........they gave me veticulitis and i almost bled out through my own skin it was aweful never again i will die at home thank you very much before i ever go back into a hospital......So basically and mind you I am not trying to scare anyone just putting my story out there a little bit So others may learn from my mistakes and maybe take it a little easier and work a lot longer......there is not a day goes by that it dosent bother me that i have to sit here in this chair and wollow away the days..........the only thing i have to look forward too is a meger ssdi check and when your tradinge down from grossing 5000 dollars a week to probably less than 1000 dollars a month it is a steep steep price to pay and the really funny thing is they actually think I want this and I am just trying to pull something over on them ........Love to ya'll and have a safe safe day, week, month, and year...

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Fibromyalgia DX June of 07 December of 08 i got to have a vacation in the hospital with blood clots in my legs and abdomin meds I have tried them all the only thing that even remotely helps me is oxycodone 15 mg and thats all i take i hate meds trying to get disability since June of 05

Grumpy, you do need to keep moving!  That's how blood clots form...from sitting too long.  People can develop that just sitting on a long flight!  Massage would help, too, and maybe you can get that when you get disability.  My massage therapist massaged my leg and moves her hands upward towards my hips.  When she comes to my knees, she rubs behind the knee because this helps with the blood flow upward.  Then she continues massaging my thighs moving towards my hips.  This has helped me and it's something I can do for myself, too.  You might try that.

 

Also, in Fibro 101, there are good stretching exercises that you do while sitting.  These were developed for those long flights I mentioned so people don't end up with deep vein thrombosis.  You should be doing those too....many times a day.  I hope this helps you.

 

Sherrine

Hi grumpy,
I can understand alot of what you are saying. I was raised to believe that a person's worth was basically measured by how hard they worked in a day. I always had a job and a few side jobs and always real physical, where I worked 110% and came home just beat up. I was in construction but mostly did house painting. I often wonder if all those years of burning the candle at both ends led to how I feel now! I cant even imagine doing a fraction of what I used to do in a day...let alone a week! lol
It is a hard thing to try and learn some self worth in a new way...when it used to be all wrapped in what you could do, how you could provide etc. It is hard, but a good lesson for all of us to see ourselves and each other as worthy just for being alive.
I also fought with SSD because I can not work. Luckily I was able to get a good lawyer and it was finally approved. The lawyer was paid out of the back pay that SSD sent so no money actually left my hand and it was the best thing I could have done! I also saw a disability doctor who ran a million tests and could basically document everything that was going wrong with me and that helped my case too because SS doesnt put alot of weight into just a fibro Dx...it helps to have multiple Dx.
I would give anything to just have a reason to jump up early in the morning, grab a cup of coffee for that drive to somewhere where people are depending on me again! You know? I would give anything to be able to go to work and come home sweaty, dirty and sore and money in my pocket! But at least for right now (still cant give up the hope things might change)...right now, I cant do that...or if I did it, it would kill me. So I am resigned to the fact that my "job" right now is to 1) get healthier any and all ways I know how and 2) advocate for my rights/ needs as a disabled American who has put plenty into the system. And I am trying to hold my head up and not let myself feel shame about where I am right now, because lord knows I didnt ask for this!
Good luck to you! Hope you hear some good news soon!

Sherrine said...
Grumpy, you do need to keep moving!  That's how blood clots form...from sitting too long.  People can develop that just sitting on a long flight!  Massage would help, too, and maybe you can get that when you get disability.  My massage therapist massaged my leg and moves her hands upward towards my hips.  When she comes to my knees, she rubs behind the knee because this helps with the blood flow upward.  Then she continues massaging my thighs moving towards my hips.  This has helped me and it's something I can do for myself, too.  You might try that.

 

Also, in Fibro 101, there are good stretching exercises that you do while sitting.  These were developed for those long flights I mentioned so people don't end up with deep vein thrombosis.  You should be doing those too....many times a day.  I hope this helps you.

 

Sherrine

 

    sherrine when i got my clots i was working luggin chimeny supplies up  a fourty foot ladder for about five days in a row....and i understand how blood clots typically form and i can assure you i dont sit still long enough to have them form that way....not that i get around as much as i use to but i do move as much as my body allows. I have tried the massage route and if anyone ever tries that again i will hurt someone no help and doubled my pain level at the time.....i probably would have needed about 60mg of oxycodone to get rid of that pain so i dont do that no more....as far as stretching goes i have stretched all my life i have always been involved with sports and always stretched every morning and afternoon at work even though the other fools would laugh.....im not typical when it comes to alot of this......One doc kind of laughed me off when i was in the hospital,,,,when i told him i had fibro......he told me no way did i have fibro and he was going to prove that it was this or that.....I told him the only other thing i could think that it might be is either graves or ms but he wouldnt give me the mri to figure that out he did however run me through every other piece of equipment that hospital had........when he couldnt prove anything other than fibro i never heard from him again....as@@h13 he was,.. i do appreciate the suggestions but i have a routine that works for me nothing else has i know when im doing too much i know when a good day is coming almost 80 % of the time..... i know when a really bad day is coming almost 60%of the time...Just little things i feel and which way the wind blows but once again thanks for listening.......have a safe and great day night week weekend what ever you need to have a good life love and peace to all JOHN