NeuroTalk Support Groups - Hi to all...an intro of myself

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- - Hi to all...an intro of myself - bit sad I guess (https://www.neurotalk.org/peripheral-neuropathy/51810-hi-intro-bit-sad-guess.html)

Quote:

Originally Posted by daniella (Post 345915)

Hi. I am so PROUD of you for talking about this. That is a huge step. I know it is hard when other people have issues but that does not take away from your needs and struggles.
Lefthanded I am at that point too with docs after my last med made me worse again. This happened this week. Good luck on your art class.
I wish others didn't have to face health issues like this either but it helps to feel less alone and fight to hear others stories.
Hugs

I can sympathize with everyone. My co-workers are aware that I am sick and they all know what is wrong with me, have researched it on the web. However, because 'I look great." They don't seem to be able to comprehend that I am sick. Before this I was pretty much a work horse. All my kids are grown, husband travels a bit with his work so I could devote more time to my job. I can barely get through a workday now and I expect this will get worse with time. However, there are many who can't still work so I suppose I should be appreciative of this blessing.

We live in a state with a lottery and last night I dreamed I won the lottery, gave it to research and a cure was found for all of us! Wouldn't that be wonderful!

I can really relate to the looking fine but feeling like hell. I am young and look even younger like 20 and people I feel think I can walk quick and should be able to push more. Even when I lag behind some don't wait. I truly now have some much epathy for seniors who may not be in pain but are less able. I know that some people may never understand. I just try to use my voice on what I can and can't do and when the stupid comments or suggestions come by others I just try to say they don't understand and take a deep breath. I think that is why forums like this are so helpful and wish I could find a real time support group. Hugs

Quote:

Originally Posted by caliTJ (Post 343518)

Hi, I have been searching the web for PN info and looking for an online community. After finding your board here, I have been pouring through the threads and it is relieving (sadly) to hear such familiar struggles. It brings comfort to know that I am not alone.

I was diagnosed with Fibromyalgia when my son was born in '05. That diagnosis never sat well with me. My symptoms just didn't seem to fit. We are under an HMO and I gave up searching for relief after feeling I was sounding like a hypochondriac to my docs.

Unfortunately my symptoms did subside here and there and now are back much worse. I finally cornered my doc and asked him to think outside the box and try to "rediagnose" me. And now I sit with a PN diagnosis. I have a battery of more tests scheduled, so I won't know more for a bit on what type or what extent the neural damage is.

My husband had to care for his ailing father who had MS for 10 years and eventually passed 9 years ago. The idea that I could become a burden to my husband is overwhelming.

I have already felt that I am slowly losing all the things that brought me joy and value. I am a photographer...or was I should say. I finally closed up "shop" last month after the pain of walking has become too much for me. I love to garden and now I can only attend to my garden when I am well and it is suffering.

Explaining my "walk" and hand pain to family and friends...well how do you even start???? I just try to hide it whenever possible. I am becoming an expert at disguising my condition. Choosing to stand when no one is looking and such.

Thank you all for reading this and I hope to find lots of information and HOPE here.

TJ in California....Santa Barbara area

TJ - I was in the drs office last week and while waiting I saw the Oprah segment with Dr. Oz. He was doing his medical thing and introduced a lady in the audience who had suffered with fibromyalgia for 7 years. She said that she had been to a conference where dr Oz spoke. She sent a msg to him about her suffering. He met with her and helped get a new doctor and a treatment plan. She said that she had been pain free for over a year and stated that she was taking supplements. She didn't go into the details of her illness but she did state that which left the impression that vitamins helped her...

I want to meet Dr Oz very bad. He seems like a very good doc who really listens. He even said how important it is to find a doc who will look outside the box and really work rather then the ones who just look at what is in front of them.I said no more flying for docs but the is one I would fly for.