Fibronaut At Home

Where Do I Go From Here?

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.

 

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This might be working!

I am hesitant to post this, because I don’t want to jinx myself.  This is week 2 of taking an extra 30 micro grams of thyroid medication on M-W-F and I think I like the results.  I’m going to call my doctor to get my new prescription.  The last two weeks have contained some of the most positive days I remember having in a very long time.  Even with the pain and the fatigue factor, I am still able to remain positive.  I’ve been staying busy and been able to meet or exceed my goals.  I’ve even added daily goals!  I’ve had several days (last Thursday, Saturday, Sunday and yesterday) where I had some serious negativity or depression and frustration and those were days where I didn’t take the extra 30 micro grams.  Today, I’ve already had to pick up my daughter from school early and had an unexpected (but very positive) visit and I’m handling it like a champ.  I’m even considering going to visit someone with the kids after school.  I don’t want to go into details with that, but there could be some drama, which has kept me away for the past month, but I feel like I can handle it.  This is huge for me.  Even though I had some negative feelings after my last doctor’s appointment, he really has helped me.  No other doctor would even have touched the thyroid issue because my tests were in the “normal” range.  I guess the real test will be to see how I do once I start taking the higher dose.

I had to add brain fog as a tag, because I accidentally posted this on my sewing blog and had to go copy the body and delete the post from my sewing blog.  Where’s my pill for foggy brain?  Maybe another cup of coffee is in order.

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A Poem For Fibromyalgia

I just found out that April is National Poetry Month.  I wrote a poem about Fibromyalgia to celebrate.

A Lament of Fibromyalgia and Chronic Fatigue Syndrome

“Show me where it hurts,” you say?
Well, tell me, have you got all day?
Head, shoulders, knees and toes,
The pain it stays, it never goes.
Hips, back, fingers and gut,
Fibro is an actual pain in the butt.

Insomnia keeps me up at night,
Then all day long, it’s sleep I fight.
Fibro-fog’s the funnest part,
I forget what I’m doing before I start.
With all of the pills I take every day,
Why won’t the pain and fatigue go away?

Is this fibro-diagnosis junk?
Am I just in some sort of funk?
Is all the pain inside my head?
Maybe I should try this or that instead?
Until you’ve held spoons in your hand,
Then you cannot begin to understand.

Invisible, my illness may be,
But watch me closely and you will see.
I cringe when I move, stand or walk.
My face hurts whenever I eat or I talk.
I conserve energy however I can.
My good moments are a flash in the pan.

Yoga, acupuncture, grounding, meditation.
Name it, I’ve tried every new health sensation.
Lyrica, Cymbalta, oxycontin, oxycodone,
Flexerall, Fentanyl and hydrocodone,
All these and more I’ve tried.
They made me wish that I had died.

Write in a journal, and go way back,
Try to figure out why you’re out of whack.
Join a support group, listen to others whine,
Then you’ll realize you’re doing fine.
Take it easy, take it slow,
Breathe deeply, calmly, go with the flow.

Gluten-free is the way to be?
I don’t have the time or the money.
I want to be healthy and eat right,
But our budget is already way too tight.
Sugar and caffeine are bad they say.
When I’m dead, you can take those away.

My Cognitive Behavioral Therapist
Told me what others think of me is none of my business.
But when you can’t work and have to prove you’re sick,
What others see is what makes you tick.
Especially when you feel okay,
You struggle with guilt for feeling that way.

Different doctors say different things,
Depends on which drug company is pulling their strings.
Once I say Fibro or Chronic Fatigue,
They act like my health is out of their league.
I just want to be treated like a human being,
Not like the head case they keep on seeing.

My house, car and life is a mess.
I’ve got too much anxiety and too much stress.
Whenever I manage to take a shower,
Rest and recovery takes an hour.
My definition of dirty and clean
Do not mean what you think they mean.

Every activity is well thought out,
Even then, there is always doubt.
What if I start to hurt half way through?
How long do I rest before I can continue?
What if I need more than a short nap?
What if I still feel like crap?

There is a storm coming in day after tomorrow,
The pain starts today and the fatigue will follow.
No matter the temperature, no matter how nice,
I do way too much and pay for it twice.
I need to move to a climate with nary a storm,
Where the sun is always shining and it’s always warm.

I could go on and on about all this crap,
But I’m starting to yawn and it’s time for my nap.

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Tension

I started this post before my doctor appointment on Tuesday.  It is now Friday and I finally have enough energy and enough of a break in my arm pain to post this.

I have a doctor appointment today and I can’t begin to describe the tension I’m feeling because of it.  I wouldn’t be so worried except that my qualification for disability depends on what the doctor tells my disability company.  I think my life would be so much easier if I didn’t have this worry and stress.  We wouldn’t have as much money coming in each month and would probably end up filing for bankruptcy.  I hate being in limbo.

My new doctor charges $50 just to fill out the form.  If I need him to fill out this form for my disability company every month for the next eight months, I’ll have to pay him a total of $400.  After that, I would be considered disabled and I don’t think I’d have to prove any thing any more.  I’ve only typed the beginning paragraph and this paragraph and I’m starting to cramp.  I can’t even hold my arms up long enough to type this!  I talked to the appeals department and told her that if I went back to work I’d either never get hired or I’d get fired in a week.  I don’t even think I could make it through a whole day.  I have trouble just maintaining energy for a couple hours when I do something with my family.

The new plan for my health is to go to Naproxen for pain relief because my pain in my body seems arthritic even though the tests don’t show anything.  Then I start on adrenal support which will hopefully help my fatigue.  Lastly, I’ll start thyroid medication.  The doctor showed me a list of the symptoms for low thyroid and I have almost every one.  I’m hoping this works.  He explained that some doctors are too married to blood tests.

Too much pain and spasms to continue.  Hope everyone has a wonderful day.

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