Re: disbelievers and intro

[Guest guest]

I get bruises all the time. Most unexplainable but it has been chalked up to fibro. I guess there is nothing they can do about it.

[Guest guest]

Hi Missy. (I have a sister named Missy - we don't talk, but we're still related, LOL!)

Anyway, about those non-believers! I had a chiropractor that I was seeing for a neck injury when I was diagnosed with fibro by my rheumatologist. He said he didn't believe in fibro, it was a "wastebasket diagnosis". I felt he was entitled to his opinion, so I quit going to him! I don't think chiropractors are quacks, I do think they serve a useful purpose, but when a chiropractor tells me something isn't there when an MD has made a diagnosis - good bye.

My husband says he starting to understand what I'm talking about now that he getting to be the age that he has arthritis in his hands. It's funny, he'll say, "My hands are so sore today", and I'll say - Gee, just like mine always are, hmmmm. He's getting the picture. I've got to say he's been better about the fibro than he was about my anxiety disorder. He thought I got panic attacks because I wanted to. Yeah, right. Nothing like feeling like I'm dying to really make my day! Sorry for the sarcasm, but sometimes I get so tired of people saying stupid, stupid things. "You don't look sick" is at the top of my list. If I looked like I felt, you're be afraid to look at me! Steve (my husband) has really always been supportive of my other medical issues. For a long time I was being treated for lupus (which has since been changed to a mixed-connective tissue disease diagnosis), and I was the president of the lupus support group in our area. He was very active with me in that support group and helped a lot. He got to see other people with the same problems as I was having (and some a lot worse) that both he and I were grateful that I wasn't as sick as some of the other people in the group.

My own mom told me nobody feels good all the time, so I should "snap out of it" and get on with my life. My mom and I do not have any communication any longer, and I can't see any hope of reconciliation in the near future. This disease is bad enough with the pain we have physically and emotionally, we don't need to take on the additional burden of uncaring family and friends. That's my take on the whole thing. I don't spend all my times with friends whining and complaining about how I feel, either. When we get together we have fun, just like we did when I wasn't sick. But, if we make plans and then I can't go, they understand that also.

I guess what all this rambling and wandering (pain pills, sorry) is about is - If somebody likes you for you that's what counts. Leave the disease out of it. If your friend doesn't want to believe that fibro is an illness, okay. Just do what you've been doing. You know better, you live with the monster, she doesn't. Believe me, I have RA and fibro, and I'd rather have the RA by itself, because when that flares I find relief, when the fibro flares, nothing helps.

Just my 2 cents worth, sorry it's so long, and so rambling, (I"m not even going to proof it at this point!) Welcome to the list.

Mindi

[Guest guest]

Hi Missy Wow, since Jr in HS.....that stinks! I had a 5 week,

severe bout with mono my sr year. Then I went to college worked

fulltime got married had a beautiful daughter

(www.geocities.com/jmharderaz) and got divorced whenshe was 2.

Singlem parented and did it all, thank God for the help of my mom.

Was a business professional (CPA), longgggggggg hours, civic groups,

charity work, Church activities, & parenting my baby..........at 35 I

ran into th brick wall that was dx'd as FMS.

I'm lucky my internist didn't give up on me and did dx fms after

seeing a sleep study that showed NO sleep beyond stage 1, No REM

sleep, I hit rem then awake, every time. Sleep is somewhat better,

btw, 2 1/2 hours of continuous sleep yippee, working on 3. I had a

great massage therapist I was already seeing a DO that did

manipulations (she had FMS) and had let the internist come up with

the dx though she suspected as much. Then I saw the worlds best

Rhuemy, for me anyway, who dx'd me and started treatment following

Dr. Teitelbaums From Fatigued to Fantistic (not fantastic yet, but

it's a goal!)...we mixed nutritionsl, with medicines, with physical

therapy.........did worse at first, to be expected, then better for a

year or so, then a death in the family knocked me off my regimen of

healthy eating and exercising and addl depression and well now I'm

worse again, still. Have to make that decision to eat right and walk.

Haven't been ready yet. See the death was my daughters father, age

37, perfect health, gone of a stroke in 2 days. So not only did I

have to see her see her father die, and have my own issues about it,

I've been under enormous pressure (which I probably put upon myself)

to see her through this time. it was oct her freshman year. needless

to say, she isn't graduating with honors (though she's bright

enough), but she is graduating in May. (she hit the end of denial and

depression over a year ago and we had to put her on zoloft for 6 mos.

now she's much better.

Anyway, why I write, DISBELIEVERS!! I have a private Disability

policy that has been paying me benefits based on several docs dx'ing

as is SSDI. However, now, 7 years later the ins co made me do a

series of independent medical exams this summer and based on the 5

minutes or less with their Rhuemy who was a pompous ass, 'I have no

objective evidence of physical illness'.....my Rhuemy is aghast! As

am I. I'm still vascilating between demanding another Rhuem.IME or

hiring a lawyer. I'm still getting my benefits, but I'm now

officially nuts (psychosomatic! all of it) and my dis case is in

the 'behavioural health' dept, and they seem to think if I see a

psychiatrisit for a year or so I can return to work. Growl, hiss

Bite! I'm a little angry about this!!! What are we to do when the

disbelievers have control over our benefits (which I know I'm lucky

to have)?!

Understand friends like yours too. Though by now most friends of

convenience, coworkers, club memebers, yada, yada, have faded away,

and it's only old old friends and some of them just christmas card

contact, and my family that are around. Thank God for my family. My

Mom believes, she saw the most of it from the beginning. My Dad

believes, but is mad I left our CPA firm and mad I dated and married

(If I can marry I should be able to return to 16 hr days?!) My

daughter understands and is a blessing. Though with my short term

memory she gets a wee bit annoyed when I ask for the 3rd time how

something went or where she's going....got a whiteboard for the

fridge for that one. & she's not allowed to ask me for any curfew

extentions, etc, etc once I've taken my meds and am in bed, because I

don't remember. If it's important I've made the rule she has to wake

me enough to get me sitting up, it really shouldn't be up to her to

guess whether I'm getting it or not, so teh sit up rule & whiteboard.

They've helped. And my DH believes. He is 42, juvenile diabetic since

age 3, had a stroke at 37 and lost use of left hand (was left handed)

and some balance and is having more issues re digestion & neuropathy.

My self centered sister has told my mom that she doesn't always

believe me and that she thinks I'm conveniently sick sometimes and

that she won't schedule any plans with me because I'm not

dependable...well then go blow!!

Ok, I've blown around here long enough..........

Blessings to you Missy, Hugs, Judy in AZ

> Greetings everyone. I've been lurking for about a week and have so

much in

> common with many of you - it's great to find that I am not the only

one.

> It's nice to read your messages.

>

> My name is Missy and I live in Indianapolis - I currently do not

have a

> 'real' job as my previous one was so stressful and chaotic that my

health

> was failing. Stress Center helped with that dilemma and then I

quit the

> corporate job. I had been ill so much and had so many doctor

visits that

> my career at the company was permanently damaged - no emotional

loss. As

> of now I'm entitled to Cobra for another year, then I will have to

make a

> decision of going back to work or finding insurance. At this

point, I'm

> selling stuff on ebay to lighten my load and have some money moving

around.

> I've been ill since my junior year of high school when the mystery

disease

> descended upon me. Having been tested for mono more times than I

care to

> count, agreement was made I suffered from CFIDS. It's now been 20

years

> since it all began (first time I've ever added that up = mercy).

>

> I was not diagnosed with the fibro until this past June - at that

point my

> health was so bad that I was visiting any doctor that would see

me...

> allergist, rhemo, therapist, tmj specialist etc. It was nice to

finally

> have a definitive answer since the CFIDS symptoms had gotten so

much worse.

> I have terribly bad TMJ - one of the 20% that the mouthpiece

appliance does

> not help. I'm looking at braces again (didn't work the first time

for the

> TMJ, why now?) or getting each of my teeth capped to make

them 'taller'.

> Not really looking forward to that one.

>

> Like , when I went to the rheumo I was just sure that I had

Lupus or

> Leukemia. I have a strange ability to go thru phases when I bruise

all

> over when anything touches me... the bruises fever up and swell

then last

> for months. Summer can be an uncomfortable time becaue with shorts

on even

> strangers stop me to ask if I'm ok.... make sure I'm not getting

beaten I'm

> sure.

>

> My reason to write today, other than introducing myself, is to ask

about

> the disbelievers. My best friend (doesn't live here - lots of

phone talk)

> has RA. Amazing that she can have that but she tells me she doesn't

> believe that Fibro exists. She is in the medical field. She is a

very

> strong personality so I don't even push it trying to explain it all

to her.

> She's always given me a hard time, especially when we were in

college and I

> pushed the limits of absenteeism - many many days I could not get

out of

> bed. At this point, I really don't tell her anything about my

health/how

> I'm feeling because it falls on deaf ears. She thinks I'm a total

> hypochondriac. Did I mention that she has RA? She's allowed to be

ill, I

> just don't have that luxury.

>

> Lots of you mention family members who you try to explain it to -

has

> anyone just stopped explaining and let them think what they want

to?

>

> Sorry so long. Have a great week!

>

> Missy

[Guest guest]

does anyone know how to get oxycontin for their pain???? I have tried all other

pain meds and they don't work and my doctors won't prescribe to me. Please help