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charlie55

New member
Joined
Sep 26, 2014
Messages
1
Reason
DX FIBRO
Diagnosis
09/1994
Country
US
State
Wisconsin
Glad to have found this group. It's calming knowing that the ones here don't judge. I've had this dreadful monster since 1994....way too long. Although back then we didn't know it was fibro. Also have degenerative disks in my lumbar area and cervical area - and arthritis - not sure if it's rheumatoid - seems to be heading that way. Did I mention that I also suffer from depression - that's a wonderful one to have, isn't it? Hypothyroidism too - they burned out my thyroid back in the '60's with radiation.

Am on disability since 2009 (got it my first try and without a lawyer - I guess that means I am super messed up) Tried to work from home doing transcription - had to do something as leaving the house on a regular basis was becoming more difficult with each passing day. That only lasted a few years and my body said "no more".

Now I have a hard time just trying to get house chores done. Found that resting in between each chore is the only way to go - although some days I can't even manage getting off my recliner and my back-heat-massage pillow. Should have bought stock in the company that sells those pillows as I must have purchased dozens over the years.

Not much of a support system for me from family and friends. Only a couple of people who see it and understand. That is very, very hard for me. Although I do have 2 little dogs who are my life as well as my cats. They don't judge.

Kids all grown now. I have 3 of my own and 3 step....plus this January hubby and I will have 12 (count 'em)....12 grandkids.

It's just lovely that 2 of the grown girls say negative things to my grandkids about Nana. I can tell just by the way the grandgirls act towards me - and have even heard things first hand from their moms. Told them to not teach the little girls to hate. I guess they think it's okay.

Income is limited which makes life a trick - but its always been that way for me. I've learned to survive. Even was homeless at one point with 3 kids, pets, a car and no money - I guess if I managed that one, I can manage anything.

Lately, my support system (HA) has been rearing it's ugly head. One of my step-daughters said I don't have an illness - I have "excuses". That hurt.

My bio daughter who is 36 also says fibro is not real. Recently had some vision issues which prevented me from driving - can't drive if you're seeing 3 of the same thing - my daughter said it was "all in my head". Wish she would have told that to the many doctors who enabled me now to see, but only with combo contact lenses, prism glasses and readers. That would have saved me alot of money if she would have told them that, right?

In other words - fibro and chronic pain sucks...has changed my life in so many ways. I think I'd have an easier time with all the pain if only I had the support of some of my family members.

Hubby claims to understand but his actions don't always show it. And he throws the "divorce" word around way too often. Sometimes I wish he would just go through with it. That stress then would be gone - I'm not afraid to live alone & money-wise, I'm sure I could cut back and figure it out.

I've tried to show family & friends the "Letter to Normals" and passed along different articles, education materials, etc., but I don't think most even bothered to read them.

I used to be the person who would be there to help with anything for anyone, and now that I can't, it seems to me I am of no worth to any of them. That's a hard one to take.

Sorry if this sounds like a pity party - truly, I do not feel sorry for myself - far from it. I just hate that my life has turned out the way it has. Just have to remind myself that there are people out there who have it far worse than I do and go on with my day.

Glad to have found you all and am hoping to be able to not only get some support here, but also to help and support others.

So thank you for allowing me in and to share. Hope you all have as much of a "pain-free" day as is allowed.
 

Tharper

Active member
Joined
Aug 13, 2014
Messages
90
Reason
DX FIBRO
Diagnosis
07/2014
Country
US
State
FL
I'm so sorry to read all this Charlie55! A support system is so very important. I guess at this time I am one of the lucky ones, my husband is a great support. My job however, not so much. I have missed a lot of work and when I had to take time off to be home for my husband who just had a total knee replacement (It is hard enough to take care of me let alone another person some days) I was told that I am missing too much work and if I continue to miss then they will have to find a replacement. At this point I don't even care! I have been looking for work to do at home. I currently am a medical assistant and that can be really demanding. I recently had an attempted lumbar puncture. I say attempted because she tried 4 times hitting nerves three of those times. Now I have really bad pain in my lumbar region. I was recently diagnosed with fibromyalgia, polymyalgia and RLS. I already had hydrocephalus, hypothyroidism, GERD, chronic headaches, depression, diastolic hypertension and I think that is it. We all have to stick together. You have people that care (even tho we haven't met) and have shoulders to lean on and occasionally we might have to lean back. Welcome to the forum and hope to chat with you again. Take care
 

HappyToBeAlive

Active member
Joined
Sep 22, 2014
Messages
35
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
OH
Hello Charlie55! Welcome to the forum! Wow, so sorry you are having it so rough! Our family doesn't always get it. You know what kind of suffering you are going through! The nice thing is that everyone here knows it too! You are Not alone! Yes, you are going through a lot,but you are strong and Courageous! I can tell you are a fighter. What doesn't kill us only makes us Stronger(although it seems like Fibro will kill us Lol!) It sounds like you have overcome sooo much! I believe you will find your support right here,We are all family! Hope you feel the Love! Soft Hugs
 
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