Monday, September 20, 2010

Fibro & all of its ugliness

I'm writing this blog because, well...with the fibro, my mind is mush 99% of the time - that is unless I'm writing. This seems to be the only way that I can put words together without them jumbling all around and coming out sounding like gibberish.

My name is Haley, and I have Fibromyalgia. I'm not sure how long I've had it as I have been plagued with illnesses since I was little. However, my official diagnosis came around 4 years ago.

As anyone with this debilitating "syndrome" can tell you - there is no consistency with regards to symptoms or flare ups. Each day, each moment is different and because it is elusive and confusing to the sufferer, the families, friends and employers of those individuals don't stand a chance in comprehending it.

So, I decided to chronicle all the little nuances of this horrible disease...yep, I said disease. Anyone who lives with this stuff knows that syndrome doesn't begin to justify what we go through. Only the word disease suites Fibro and all the yucky stuff that comes with it.

For example...when "normal" people go to the doctor, they fill one maybe two things out for their medical history. Current illnesses, prescriptions, etc..right? Well, I carry a piece of notebook paper, in my purse, listing everything I have/take - just so it's easier for me and my family. The nurse can copy it, attach it to my file and move on way quicker than it being recorded on the information sheet.

Okay, here goes - this is what all I have, currently

Spinal Canal Stenosis
Degenerative Disc Disease
Herniated/bulging discs in the cervical & lumbar regions
Pinched nerves in the cervical region
Bone spurs on both sides of the cervical region
Kyphosis and lordosis (reversal of curvature of cervical and lumbar endings)
Arthritis in all of my joints
Irritable Bowel
Repeating Kidney Stones
Early onset Glaucoma
Bell's Palsy
Pulmonary Hypertension
Bipolar Depression
Sleep Apnea
Nasal Allergies
Heart Murmur
Low Blood Pressure
Multiple miscarriages (5 to be exact)

As for the medicines I take; Claritin and Singulair (for the allergies), Flonase and Nasacort (for the allergies), CPAP treatment (for the apnea), Welbutrin XL (for the depression), Elavil (for the depression and the IBS), Synthroid (for the hypothyroidism), Calcium, fish oil and flaxseed supplements (for various holistic reasons), Advair (for lung function), Prevacid/Prilosec (for ulcers/GERD). Then of course there are pain killers such as Darvacet and high dosage Ibuprofen but those irritate the ulcers so most of the time, I suck up the pain without them. I also have xanax for when the stress gets too bad and muscle relaxers for when the spasms won't let up.

Now, try putting all of that on those little forms - it is no picnic!

Even with all of those negatives, I would gladly keep all of them if I could trade, what I consider, the worst of the fibro symptoms....the fibro fog or memory loss/lapse.

I can only remember snippets of my children growing up. I've lost entire activities, days, weeks, months, etc. I have been driving and forgot how to drive, I have put my mail and keys in the fridge and the milk in the cabinet....I have a tendency to ask a question and then block out and or forget the answer almost immediately.

These are the worst, without question...this is the hardest for me to deal with. Just today, my loving husband came into my bedside to tell me goodbye. He was leaving for work just like every morning but today...well, he said we had a conversation and that the dog came up there too and he scolded her, etc.

I awoke some 2 hrs. later, having no memory of our encounter, what so ever. I was afraid that he had gone off into another part of the house getting ready for work and something happened because he didn't tell me bye. I was scared that he was in there somewhere needing medical help or maybe fell asleep on the couch - I jumped out of bed and ran through the house looking for him.

His lunch bucket was gone so I looked to see if his truck was gone. It was, so I texted him to ask him why he left without a word to me. He called me and filled me in on our conversation that I had forgotten ---- what will I forget next???

I don't know but I hope that I somehow learn of it so that I can blog about it. Maybe then, if I forget it again, I'll have a written record of it.

Until next time.

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