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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Staying in the Zone

I haven’t posted as much as I’ve wanted to over the last month.  I’ve been guilt tripping myself whenever I think about my blog, and that was not the purpose of my blog.  I’ve had to revisit why I decided to start a blog about my fibro and chronic fatigue.  As a result, I feel less stressed about whether I’m posting “enough” or not.  I’ve also made a goal to post more on my sewing blog, which is more a “Look what I can do” blog, than anything else.  I get so much happiness and fulfillment in cataloging my creative side.  For a while, I was considering dumping on or the other of my blogs, but I’ve since decided to create a balance between the two.  It’s kind of like feeling guilty for spending more time with one of my children.  If I give them equal time, everyone will be happy.

I’ve really been focusing on my posture and my breathing lately.  When I go to pick up my kids, I put my seat closer to the wheel and in a more upright position.  This helps my arms because I’m stretching them less and it makes me feel more alert and less like I’m so comfortable I just might nod off while driving.  If I find myself zoning out, I turn up the radio and force myself to check my mirrors.  I  check my posture and if I’m clenching the steering wheel or my teeth, I loosen my body and take some deep breaths.  If one of my legs or arms is hurting, I try to give that limb a break.  I keep them in position, in case I need to use them, but I relax them as much as possible.  A lot of my pain comes from clenching my muscles in response to my environment.

We have a new computer, which has it’s advantages over my old laptop.  My old laptop has charging problems and that created another level of stress.  It makes this horrible noise when the battery is running low, then we have to go through this ritual of unplugging the charging cord and manipulating it so that the laptop charges.  The new computer is set up at the kitchen table, which forces me to get off the couch and sit in a normal chair.  There is a lot of light in our kitchen and I get my daily dose of sunshine, which is so important.  I also practice good posture while browsing the internet and focus on keeping my shoulders lowered and my breathing even.  If I’m clenching my teeth, I open my mouth and wiggle my neck to relax those muscles.

I killed my third heating pad.  I’ve decided to give up on that.  A hot washcloth in a plastic bag, with a towel around it works just as well and there is no fire hazard there.  I’ve found a simple pattern for making a rice filled heating pad that you microwave for 10-15 seconds and I’ve decided I’m going to make a couple of those.

My Social Security hearing is next month.  STRESS!  I have done everything I can do to prepare for this event, so I’m doing my best to just let it go.  Helping my doctor fill out the questionnaire made me feel hopeful.  My attorney told me that the judge I have relies heavily on what my doctor says, and I’m confident that my doctor understands my condition and abilities and is able to convey the difficulties I face on a daily basis.  That is all that I wanted in a doctor.  Understanding.

I’ve really been working on being kinder to myself.  Today, for instance, has been challenging.  There is a storm front blowing through and I didn’t sleep well last night.  I’m on my second cup of coffee, which usually stresses me out.  I feel like, if I have to drink a second travel mug of coffee, I’ve somehow failed for the day.  I have acknowledged those feelings and then told myself, “who cares”.  And then I breathe and I’m good.  Accept it and move on.  I know from experience that on days like today, a shower and picking the kids up from school may be all I accomplish.  That is okay.  Actually, if you count sitting upright and typing this, I’ve accomplished more that I normally would on a bad day.

Off to the shower, then gentle thoughts, maybe a nap, and then picking up kids.  I can do this.

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I Hate it When I am Right

Nuvigil gave me the energy and alertness I needed to safely get my son to his doctor’s appointment.  I was able to go to the grocery store for his meds as well.  Getting home was a little more tricky.  The painful spasms started about the same time the nausea and fatigue arrived; on the drive home.  I drank green tea so that I could get my daughter from school.  Got the dishes thrown in the dishwasher.  I’m scared to check if they’re clean or not, since I didn’t pre-rinse.  The laundry is kind of happening.  No folding.  Just finishing washing and drying and then separating into rooms.  My daughter has one basket; my son has another; then I have one with my clothes, my husband’s clothes and my littlest daughter’s clothes; the last basket has the load with all the small towels and socks in it.  Not sure how this is all going to shake out.  We might be basket diving for the near future for all socks, underwear and small towels.

My shoulders, neck and hips are really angry at me right now, as are all the muscles in my face.  Too much talking to kids and doctors and grocery store people and way too much driving.  If I could find a way to drive that didn’t require me to move my neck, I would have it made.

I have a theory with this Nuvigil nonsense.  I think that although the Nuvigil does give me alertness, it also wakes me up enough for me to really notice how much I freaking hurt.  I’m trying to have an open mind about this, because I’m aware of how bitter I am toward the medical establishment and pharmaceutical companies after all this Fibro/CFS mess.  My doctor didn’t recommend I take Nuvigil every day, just when I “have to get something done”.  I still want to laugh hysterically when I repeat his words to myself.  I am a wife and a mother of three.  I have shiznit to do every day, that has to be done, that I don’t get to because of pain and fatigue.

Here comes the Mommy guilt.  I can think of several times in just the past two months, where I couldn’t be there for my kids.  What if I had just tried taking the Nuvigil?  There’s a possibility I could have gone to my son’s cross-country banquet or two of my daughter’s helper days at preschool.  Those are just the things I’ve missed that I can think of.  Even if I think I’ll feel well enough to do something important for my kids, maybe I should just start the day with the Nuvigil, thus improving my chances of being there for my kids?

As always, the work question is in the back of my mind.  Could Nuvigil give me the extra oomph I need to go back to work?  I just don’t know.  I don’t think I could concentrate at all with the pain I would have, even if I was more alert.  I don’t handle stress well at all.  All it takes is a little bit of stress and I can’t sleep, can’t eat, can’t function.  Let’s say I have the easiest job on the planet, whatever that might be, I would be required to move and movement, especially repetitive movement brings pain.  Even with the Nuvigil, I still got fatigued and nauseated.

On a good day, I can do about an hour of activity, before the fatigue really kicks my butt.  The pain is always fluctuating and no matter how good a day is, I usually have pain.  I can’t tell you how many days I had at my old job, where I was yawning all the time, no matter how much coffee I drank or what I ate.  There were days when I called in, simply because I was tired.  There were days where I could barely sit at my desk.  Is there any job I could do?  I honestly don’t know.

The disability company that was paying me, but dropped me, said they thought I could be a teller in a bank again.  I disagree, obviously, which is why I’m applying for Social Security Disability.  How would I handle money all day?  Write?  Get people’s transactions correct?  The problem with Fibro/CFS is that one problem compounds on top of others, until you aren’t able to function in even the smallest way.  All the pain, the fatigue, the fog, the stress, anxiety, depression, weather changes, etc. would combine and I wouldn’t last a week.  I’m not being pessimistic.  I’m being realistic.

Thanks for reading, if you’re still with me at this point.  I had no idea I had all of that in me, but it feels good to get it out.  The hamster in my head just lost 50 pounds.  I’ll let you know tomorrow if I’m able to sleep tonight or not.  Right now, I feel like I could go to sleep, but if I take a nap now, I might be up the rest of the night.

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Today is a New Day

Thank God!

I talked to my hubby last night.  Focused on all the happiness I’d been brushing aside and felt a whole lot better.  I told him about the silliness of the squirrels and birds in the yard and about our neighbor yelling at our dog (which, believe it or not, was really funny).

In super big news, I got a letter from my attorney that my Social Security hearing has been set.  February 18, 2014! 

This morning, I got a message from a wonderful friend.  She’s coming up to go to lunch.  I am really lucky that she has not completely given up on me over the years.

Today is going to be a good day. 

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Total Panic Mode

It is nearing the one month mark since I was denied SSDI.  I am entering panic mode.  My hubby has been bugging me about contacting an attorney and updating my explanation of my difficulties.  Just writing about it has my stomach in knots.  My breathing is shallow, my stomach has butterflies and my teeth are clenched.  Last night, he started to talk to me about what he wanted me to work on and I had to cut him off.  I told him to make me a list of what he wanted me to do.  I could not deal with any of it.  I put on my headphones, listened to calming music and escaped into the book I’m reading until I couldn’t keep my eyes open.  Then I went to bed and kept repeating “You can’t do anything about it tonight. Deal with it tomorrow.”  This allowed me to get to sleep last night.  Not sure why I decided to post about this when it is bringing me back to this anxious space.  The anxiety just compounds until I’m a nervous wreck, barking at my kids and in pain from all the tension.  I meet with the attorney next week.  I cannot be a basket case until then.

This is why I know going back to work is not a possibility for me.  I cannot handle stress.  I go into ostrich mode, where I just want to bury my head in the sand until the coast is clear.  Add to that the pain and fatigue and I wouldn’t be able to function.  Since the denial, I’ve considered the possibility of working from home, just to bring in a little income.  I love to sew.  Why not turn that love into something profitable.  So I checked out books from the library on starting your own Etsy shop and I can’t even get past the first chapter.  I become overwhelmed by all the what-ifs.  I know that just getting started is going to be a lot of work.  My hubby starts questioning me about certain aspects of selling online and I freak out.  I know he just wants me to be aware of all the work my idea will take but it feels like discouragement.

So, I feel like I should be doing more, but every time I try, my doubts surface and I give up.

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What is Next?

As I wrote yesterday, I received my Social Security Disability denial in the mail.  Bummer.  I wasn’t really surprised, just disappointed.  We will be contacting an attorney that we found on http://www.fmaware.org.  I am dreading the continuation of this whole process.  Much of my anxiety is tied to feeling judged so the possibility of months of close scrutiny has me feeling, well, anxious.

I am also torn because I am only 34 years old.  Who wants to be disabled at my age?  No one.  I feel like I’m giving up by pursuing this disability claim.  I guess deep down, I am still wishing I could be the old me.  The letter from Social Security stated that my condition is stabilized on medications and while my conditions result in some limitations, I should not be prevented from performing work I’ve done in the past as a teller.  Tellers stand at a station all day.  Even when they sit, the amount of repetitive movement required would have me resting more than working.

I’m really trying to think positively.  I have more to say but the tablet is spazzing out and I am about to chuck it.

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There Are No Coincidences

My Social Security Disability denial came the same day as Mother Nature’s Gift.  Enough said.

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Let The Freak Out Commence!

I know I just posted this morning (if you haven’t read that one, scroll down now so we’re all on the same page)  but I’m beginning to panic.  I need to purge and then I will hopefully move on.  The Social Security doctor was nice enough and pretty cute but very brief.  I told my hubby the appointment was quick and dirty.  My hubby replied “just the way I like it”.  Hardy-har-har.  I told him “but he didn’t even buy me dinner.”  A heartier hardy-har-har with a snort at the end.  We were halfway home when I realized that the doctor didn’t even ask me about my depression and I forgot to put down anything about my anxiety or thyroid.

Sigh.  Cue the beginning of panic mode.  There is nothing I can do about it now.  He just went through his questions so fast.  I know he was probably trying to trip me up.  He made me walk and do all these other movements, which I can do, I just have a lot of pain during and after.  I made sure I told him that and I made sure I told him of the pain with repetitive motion.  I also made sure to mention the fatigue.  So now all I can do is wait for their decision.  I need to be realistic and not  get my hopes up.  The worst that could happen is for them to deny me.  We’ve been surviving for almost a year on one income.  We just have to keep on, keeping on.

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Snow, Fo’ Sho’.

 

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We awoke to find a couple inches of snow. With my weather-prediction body, I should have been a meteorologist. It is supposed to continue snowing through Wednesday.

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In technology news, yesterday, I dropped my laptop. The screen is fubar and I’m imposing a technology ban on myself. I will no longer be allowed to use any kind of mobile device while I’m mobile. Walking and doing anything else is obviously not for me. We are currently using my daughter’s Kindle Fire. The really sad part is that this is not the first time I’ve destroyed a laptop. August 2011, I spilled an entire glass of Orange juice in the previous laptop. What bothers me the most is that I was trying to connect the printer/scanner to the laptop when I dropped the laptop. That’s one way to solve the problem, I guess.

In other fubar news, we’re staying with family because, last night, while draining the bath tub, the water went into the kids’ room. We just replaced carpet pad and dried out the carpet. I’m pretty sure I shared how I tried to clean the washing machine filter and didn’t get the cap back on all the way. This time is so much worse because the water doesn’t smell like the girls’ bath water or washing machine water. It smells like the sewer lift station. We are so fortunate that we have family nearby who are willing to let us stay with them. I could really use some good news. I have a doctor’s appointment tomorrow. I have to pay for him to fill out my Social Security disability paperwork. My hubby is driving me, but, my doctor is in Boulder and they are expecting more snow than us.

April has been a tough month.  I’m ready for May.  I’ll turn 34 and hopefully we’ll have our house figured out and the rest figured out.

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