Fibronaut At Home

Where Do I Go From Here?

on May 20, 2014

I received my letter detailing my Social Security unfavorable decision.  I received it Friday and finally got the nerve up to ready it today.  I didn’t want to ruin my weekend and I already had enough anxiety about going to Jury Duty on Monday.  Jury Duty went better than I expected.  The Jury Commissioner had a great sense of humor, which made everything easier.  I had to stay all day, but we had a lot of breaks in the morning, so I was okay.  The afternoon dragged on and on and I hurt much worse than I had in the morning, but sitting on a wooden bench, even with a back, will do that.  I still hurt today and I’m still tense, but that was to be expected.  I was able to stay positive about the whole experience.  I wasn’t picked to be on the Jury, but felt like even if I had been, I could have handled it.

Back to the real reason I’m so tense today.  Basically, the judge said I wasn’t believable.  Mostly due to the opinion of the first neurologist I saw, Dr. David Ewing.  If you are unfortunate enough to come across this doctor, run (or walk speedily, whatever works) in the opposite direction.  Nearly every lady with fibro that I know, when I tell them he was my doctor, they curse about him, say he’s the worst doctor for fibro or have some negative story about him.  Even my attorney has heard the horror stories.  If you are seeing a doctor who doesn’t listen to you and refuses to explore any other options than medication, same thing.  I’m not knocking fibromyalgia medications, I take prescription medications.  In my opinion, fibro and CFS require a doctor to think outside the box.  The thing that helped the most with my CFS has been thyroid medication.  No other doctor would even refer me to a doctor for my thyroid.  Even the doctors that diagnosed me with fibro and have seen me more recently were considered less credible (not sure if that’s the correct word) because the judge thought they based their opinion on my complaints.  He also said that there were no tests showing a reason for my pain and acknowledged that in cases of fibro and CFS that there aren’t.  Apparently, I only walked as if I was in pain some of the time.  I also told them that it doesn’t always hurt to walk, but whatever.

I feel discouraged.  I don’t think I can come back from a judge’s opinion and Dr. Ewing’s opinion that they don’t believe that my pain is to the extent that I’ve reported.  I’m pretty done with it.  I know a lot of people will tell me not to give up, but I don’t feel like that’s what I’m doing.  I’m recognizing their opinion and I understand why they feel that way.  I feel like the only thing I can do is accept this and move on.  Raging against this will accomplish nothing.

I have the support I need to do this.  My husband, his family and my family are awesome.  I’ve rekindled some friendships from high school that have healed me more than those beautiful women will know.  It’s a wonderful thing to know you can pick up the phone or get on Facebook and have a conversation with someone who knows you down to your soul and only wants what is best for you.  I have amazing examples to follow.  My Dad, my Step-Father (who I also call Dad), my Mother, both my Mothers-in-Law and my Father-in-Law have all worked with pain.  They haven’t given up and I can’t either.  Every day I wake up with one priority: To be a good example to my kids.  Every time I whine about my problems and find excuses not to do something, I’m telling them it’s okay to make excuses just because something is difficult or because I hurt.  I can’t do that.  It is not the example I want to set for my kids.  No matter how bad my pain or fatigue I want them to see me pushing myself, going outside my comfort zone and rolling with the punches of life.  If I am too tired or in too much pain, I explain that, but always before I have a little honest conversation with myself about why I’m really telling them no.

I’d also like to make a special request.  If you are going to make any negative comments towards me or my attorney, I really would rather you keep that to yourself.  I have to stay positive for my husband and my children and I cannot even entertain thoughts of unfairness.  Sometimes life is unfair.  The judge feels that I could be a teller at a bank and if it takes trying to do just that and seeing what happens, I’ll gladly do that.  Since my diagnosis I have learned one very important thing.  You never know until you try.  That’s all I can do.  Try.  My husband would chime in with the quote from Yoda, “Do or do not.  There is no try.”  That certainly applies in this case.  I made him a painting of this quote and I read it every day.  No more excuses.  The pain and the fatigue are going to be there, I need to learn to deal with it.



9 responses to “Where Do I Go From Here?

  1. painfighter says:

    There is a blood test for fibromyalgia now. It’s expensive though and most insurance companies don’t cover it. Something like a $1000 for the test or some craziness like that. I know most of us don’t have that kind of money with all of our medical bills but if the judge is wanting “definitive” proof, you could explore that. Do some Googling on new research studies issued on fibromyalgia. There’s been a few studies lately that prove fibromyalgia is real, for the remaining skeptics out there. Maybe you can use them in an appeal. The judge I had as a mediator for my divorce – so not the same thing as what your going through but as close as I get – told me he didn’t believe fibro was real. I told him it IS real, doctors/scientists have proven its real, and I was offended that he would say that. Of course he wasn’t the judge presiding over my divorce, just the judge doing the mediation so I could get away with saying that. Have you and your lawyer discussed pursuing disability by piling on all the other ailments that usually go with fibromyalgia and giving them more emphasis over the fibro and CFS? The other ailments we usually have are seen as “more real” by skeptics like your judge since the diagnoses have been around forever. That’s what I did with my divorce to get the judge to order higher spousal support. Good luck and hang in there!

    • csgomez79 says:

      I have to meet with my attorney still to discuss my options. I don’t know if, even with all my complaints, it would be enough for this judge. I’m just going to take it day by day and try to stay positive.

  2. Julie Ryan says:

    I’ve been reading more and more about the connection between Fibro and Thyroid disorders. Of course, if our numbers don’t prove it they don’t want to believe it – and that’s IF they even run ALL the tests. I had finally found one NP that would treat mine and then she disappeared and now I am trying to find someone else.

    As for what to do now, keep trying. Get more opinions, keep lots of records. Keep a pain/activity/ symptom journal. You are your own advocate! Sending you lots of positive energy (oh, and I so would have used my illness as an excuse to get out of jury duty).

    • csgomez79 says:

      I thought about getting out of jury duty, but I didn’t know if my doctor would charge me to fill out the form the way he charges for disability paperwork. I thought it would be a good experience to try out my new “out in public” tactics for avoiding pain and anxiety.

  3. Ms. Ladybug says:

    I’m so sorry about your denial from the judge. I so often wish they had to walk in our shoes for a week. If I said a day…they might end up with a decent day and that wouldn’t be fair. Fibro changes daily. Our ability to manage our pain changes daily. I think those of us with chronic pain are the most resilient folks I know…we stretch and stretch and stretch ourselves to live within the confines of our challenges.

    I have a question for you. If you didn’t have your husband and kids and family to support you emotionally and financially, do you think you would try harder for an appeal. I have lived with no income of my own for over 3 years and my case is currently in appeal. I am so afraid of what is next if they deny me. I have lived with so many people and my options are narrower and narrower. I keep trying to “work”, but I have found I can either do what it takes to keep a roof over my head (in the form of a work trade…doing chores to have a home) or I can work to earn a few dollars to keep my vehicle licensed and insured and with gas as well as feed my dog and get my meds. But I can’t work or do enough to take care of it all. And I live VERY frugally. I am living off grid right now and work 15 hours a week for my room and board except for meals. But that does me in. I am exhausted and risk overdoing and not being able to function the next day if I do anymore. Thank goodness for my couple days off to recoup and maybe have a little socializing. It’s hard. I just wanted to know if you didn’t have any support (I have little to none) if you would make a different decision.

    • csgomez79 says:

      I think everyone’s situation is different. You can’t look at anyone else and what they’re doing and judge your life based on theirs. We’re all on a journey. I’m very fortunate that I don’t have anything more complex than fibro and cfs to deal with. I started really small with what I was doing every day and tried to add just a little more. One big thing was staying positive, being okay with where I was and what was going on in my life. Not getting all in my head, brushing off my self doubts and anything negative. Listening to music helped a lot. I can’t say whether I would make a different decision were I in your shoes. All I can offer you is hope and support. I did it in a way that worked for me.

  4. Michelle says:

    I was denied three times for social security. The fourth time I got a lawyer ( — on the east coast) that got me a favorable decision. You should look up a reputable disability lawyer in your area. It makes all the difference. The best part with mine was, I didn’t have to pay unless and until I won.

    • csgomez79 says:

      I don’t pay unless I win. I’ve decided to go for a closed period. I would be paid for the time I quit working until I started feeling like I could work, which was a couple months ago. If I become sick to the point where I can’t function again, I can always file a new claim.

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