Not a Good Fibro Year.

by on December 31, 2012

Post image for Not a Good Fibro Year.

I cannot express how much I have looked forward to posting this first in an ongoing series of blog updates focused on my wife Michele’s personal battle with Fibromyalgia. Why? Because it means that FINALLY the FibroTrack application is out of the planning / building / testing phase and actually out there being used by real people. For me that represents the culmination of almost 2 years of work.

This year has been crazy for her fibro. Yes, all years are crazy with fibro…  but this year has been over the top insane. How insane?  How about no less than 3 surgeries! Yes fellow fibro warriors, we most certainly met the insurance deductible this year.
Michele Smiles

Michele - THIS is how I like to see her!

This year, we started ripping toward that deductible right out of the gate. Michele’s neck pain, which has persisted for years, was terrible. She has tried everything including chiropractic, massage, injections, various therapies, TENS and more but the radiating pain up around her head and down her right arm had grown truly horrid. She was prone on the sofa wrapped in heat packs for hours every day, often in tears. Watching the one you love suffer like this and feeling powerless to do anything to help is tough for guys to take. Men are programmed to see any problem as something that must be solved. We feel some ingrained need to “do something” about it. So what do you get when there is apparently nothing you can do? Despair.

No - That is not a Halloween Costume! A Nurse did that....

In March she got Cortisone injections in her neck. This was made more fun when (once again) the total medical bills came to more than 200% of what was originally quoted. This always happens. It seems that getting an accurate and complete up front estimate on total costs for pretty much any medical procedure is more complicated than a NASA shuttle launch. The Cortisone injections made her sore for several days and then did nothing at all. Over $2,000 in total for one injection that did nothing. Thank you sir, may I have another.

The next bit of fun had nothing to do with fibro and everything to do with basal cell carcinoma. Michele has had to have a number of moles removed due to this over the years. This year she went for two! One on her lower cheek and one right on the end of her nose. Take a look at the picture – how is THAT for a bandage!

As the year progressed and Michele’s neck and headaches got worse, we jumped back on the medical test merry-go-round. MRI’s are always fun so we went for a healthy dose of that. Bad disc, nasty bone spurs, direct nerve interference, abnormal pressure, alignment issues… the neurosurgeon was packed full of fun tidbits like this. So what did the surgeon suggest?  Uhhhhhh surgery. Shocking I know.

Neck Incision

Disc Fusion Surgical Incision... they go in from the front to remove the disc

So with shots, therapy, tons of testing, 2 outpatient surgeries, 1 major surgery, a throat infection no less than 3 times and massive headaches far more often than not… what more fun could we sign up for? How about a sleep study! With the insurance deductible met it’s a free for all health care frenzy at the end of the year! We actually had 2 full nights of sleep study and now Michele has a nifty new CPAP machine to help her breathe better as she sleeps. She has only had it a week, but so far so good she is sleeping well with it. Even if she does look like Darth Vader.

With the new year almost here our blissful days of “free” health care are coming to an end. The insurance deductible resets and the game begins again. This year though, we definitely feel we are in a better position than we were a year ago. It has only been 2 months since her fusion surgery so we know she is still healing but so far the neck pain and headaches are greatly reduced in frequency and severity. Hopefully the improvement will continue and the CPAP machine will work to improve her sleep. Going into the new year the focus is on losing weight, working back up to exercising daily and reducing the mid back pain.

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{ 6 comments… read them below or add one }

Sara January 3, 2013 at 1:00 pm

I would like to say, you are the strongest couple ever! It is wonderful to know there are people out there who do care enough to make a difference. I am excited to try this program out and share it with others I know could benefit from the help it provides. Still in the toutorials but browsing a bit to see what is on here I have already found ways this program could help me in my Fibro Fight. Again thank you so much for this program!

Sara Hansen

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Pam Clausen January 6, 2013 at 6:40 pm

Hi Terry!

Thanks for the update! I hope Michele’s (and yours) 2013 is surgery-free! Did the surgery send Michele into a fiber flare? Mine sure did!

Something for you to ponder…I started taking Niaspan for my cholesterol level. It was suggested that it can also lessen arthritis pain. Since working my way up to 3 pills before sleep, I feel much better. Perhaps it has a positive effect on myofascial pain? I was also told to drink 1/2 oz. of water for each
pound I weigh, which hydrates the muscles. That’s hard to do, but a good goal!

How are you doing with FT? Launching on FB and tweeting are great avenues to get the word out!

Keep in touch,
Pam

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Shannon January 9, 2013 at 2:37 am

Congrats on the new site Terry! You really have done a fantastic job.So far it looks great. The user interface is pretty idiot proof (that’s good!) and first off, I’m impressed with how much I can customize each feature and/or add my own notes. I’ll continue to report any little bugs, and I’ll for sure pipe up if I think of a feature that would help me. Thanks again for creating Fibro Track!

I got a CPAP machine (study done for snoring) back in 2006 or so. It did help at first. Now, not so much. I’m not sure if the machine is now faulty (it still works) or if it needs adjusting or if there is no hope at all for regular sleep! At least for me. I am 100% compliant and that now means I can’t sleep without the damn thing even if I tried. That mask and the air pressure has to be present or I simply don’t sleep. Which is scary. No power, no sleeping. So give her peace of mind, get a back up generator if you can lol

I so hope Michelle gets the relief she deserves from the fusion surgery! I know how awful every single day kind of pain is. Please tell her my thoughts are with her and that I’m sending happy, healing and loving energy her way! *gentle virtual hugs to ya both*

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Kris Thrasher January 19, 2013 at 7:49 am

Wow – I thought my fibro year was bad! Thank you for sharing! I just got a cpap machine a couple of weeks ago for sleep apnea. I’m told I will feel so much better actually getting oxygen when I sleep. I’m still waiting for that to happen. Last week was one of the worst flare-up weeks I’ve had in a long time. I guess it will take more than a few weeks to undo almost a decade of fibro sleep damage. Good luck with this new venture. I’m signing up today!

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Kris Thrasher January 19, 2013 at 7:51 am

PS. I showed my husband the photo at the top and he said it looked just like me (we have that exact couch and pillow case!) ;)

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Laura Ann February 1, 2013 at 6:35 am

Michele is very lucky to have such and understanding and loving husband. My ex-husband could not be.We had an execulent marraige until i got sick 11 years ago. We have been apart since 2004 because he could not handle my not working anymore (I have a usless college degree). When i was first diganosed, the doctors torchered me with injections and (fibro fog) the injections they give you in your spine when you are having a baby. My ex would not even go to the doctors with me, instead, he called me names and put me down for what i could’nt do anymore.
Today i am living in a man i have been dating for 2 years. He loves me enough to pay attention and be able to see in my eyes how much pain im in. If i say i did’nt get anything done today because i did’nt feel well, he says so? I just hope he is in this for the long hall because i have been to see 3 of the best doctors is Boston and they tell me i am progressing quickly (eventhu they dont know why) and will not get better.
Keep up to great work of taking care of your wife, she needs you more that ever!

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