The Discomfort of Disbelief

“The feeling of being doubted…is an ever-present background noise…”

Did you ever wonder if people believe you? Is that only the mental stomping ground of the addict? The alcoholic?

The feeling of being doubted, of my integrity being questioned, is an ever present background noise…especially when I am sick. I was even afraid, just now, to write the word ‘sick’. (wouldn’t it be better to minimize?)

One very HUGE contributing factor to this constant was the years upon years of describing extreme pain to a plethora of physicians who could find no ‘easy’ or ‘obvious’ condition to label me with. There were no broken bones, I had a history of drug abuse, I had a history of a mental illness diagnosis, and I am a woman. I was also very strong, working difficult physical jobs normally held by men, which may or may not have been a factor.

My experience has not been an isolated one when it comes to women who have Fibromyalgia and/or similar diagnosis. During the years before the medical profession widely recognized this condition I was one of a multitude who went thru years of mental anguish and physical agony before finally being given a smidgen of relief.

Finally a Diagnosis !

It took real determination (and very real disability and pain) to keep pushing on towards a diagnosis. I was told it was all in my head, that I was just overweight and needed exercise and that what I was experiencing was just a consequence of aging. At this point I was crying every night from the burning in my joints, in my muscles and in my spine. My best description for that time was as if I were wearing a dense heavy coat that was soaking wet, all the time. A coat that weighed about 100 pounds and was crushing me.

At this point my work was suffering, a kind boss had taken me aside after noticing my wincing, and suggested a Rheumatologist. Initially even he was sceptical until he got back the results of the CT Scans and MRI’s. (He was the first to order these types of tests!) I distinctly remember the initial shock at him gently taking my hand and apologizing, so sincerely, for not believing the severity of my discomfort. He went on to ask me if I had been in a car accident, the images showed that level of damage to my spine.

There were a myriad of issues the films brought to light, and from that point on my care finally addressed them. The physical relief was matched and even surpassed by the rush of validation! I was taken seriously!! I was, finally, believed!

Feeling Any Pressure in Your Chest?

Wow. I have been asked that question many times over the past week or so. The answer is YES. I DO feel pressure. Yes, I AM out of breath. Yes, I AM terrified.

I suppose you deserve a little insight here. If you are a follower, you know I have (many) health issues. I thought Fibromyalgia, Bipolar Disorder (or is it a disease these days?),Diabetes, Chronic depression, PTSD, Degenerative Disc Disease, Osteoarthritis, and a history of Hep C were about all. I am sure I missed some, too, but never mind. Now to top off the party, I did not pass my surgical clearance heart tests, so I have to go Thursday, my 50th birthday, for a heart catheterization. If they find a blocked artery they will put a “stent” in.( I thought it was “stint”, but that is something you do in the Army-ho,ho,ho…)

the surgical clearance was needed so that I can have 4 levels fused in my destroyed neck, and my previous spinal fusion fixed, due to a couple of recent accidents. I also have a suspected “labral tear” which keeps me from walking much on my recently healed, formerly broken ankles. This is when I am not to dizzy from a condition called BPPV which causes vertigo so bad that it makes me pukey, which was exaccerbated by being shot up with Narcan in the local ER in May, by a doctor with a hard on for chronic pain patients which caused me convulsions for 45 minutes with my head bashing off the stretcher until I became REALLY injured, and being tied to the hospital bed, unconcious, in the dark, and alone at 2:30 in the morning.

I will be amazed if that is a real, legitimate sentence. I think that almost qualifies as a bit of a “rant”, but I don’t want my BP to go up:). Anyway, that is only scratching the surface on my medical woes- the other local hospital misdiagnosed my spinal Cord stimulator as a Pain Pump, so they kicked me out of THEIR ER as a drug seeker, without even letting me see a physician, all while I was in excruciating pain with a broken ankle, torn knee and shoulder and a fresh herniation in my neck, from a fall I had taken the day before. I think they decided that if I had a pain pump, I could go push my little button and die outside or something… I am going to look up the Statute of limitations on malpractice one of these days…

I am REALLY getting off track here. I just wanted to say that I was not afraid of having the spinal surgeries I need, I trust my neurosurgeon, and I like him. And I feel like he really CARES about me as a human being. But this cardiologist doesn’t even really talk to me- he just prattles on onto his little device while I am sitting there with a big question mark suspended over my head. I wouldn’t be suprised if he discusses his own toilet visits with himself on his little doo-dad.

When I originally sat down with him to “discuss” the results of my Nuclear Stress Test, he held the paper down to cover the results like a 10 year old in math class! (yes, I cheated sometimes…) I just don’t feel very confident with a guy who hides my own answers while talking into a box of tic-tacs! All this in a rapid fire, oddly accented voice that sounds like Omar Shariff. (I love you Omar!)

I was going to get a second opinion before they thread this wire through my teeny little veins, to my pitter-pattering heart. I have had panic attacks in the past from being abused, and I think the stress I am under trying to care for my Dad by myself during all these medical issues has caused this pressure and breathlessness, but I don’t want to mess around. If there is something wrong- I want to know now. I was finally going to have the surgery to relieve all this pain, though. Now I have to wait at least 6 more weeks he says.

Dad keeps feeding the cat food to the birds, and the dog food to the cats. He continues to believe that I am my dead mother, and that he swam in the Pacific ocean last night with President Eisenhower. My only brother is up in North Carolina, working 20 hours a day, and drinking beer with his wife, while they run thier smoothie shop. My Mom is gone these past 4 years, 5 come the 21st of this month(her birthday, by the way…). My only other relatives are 2 elderly aunts on the west coast of Florida, and they stil think I am a weed smoking 12 year old. So I am pretty much here in my head, scared, alone, and worried.

I told my fears to you, and I am going to tell them to God now. He will be my real Comforter, My Rock and my Refuge. There is nothing man can do to me that God can’t undo, if that is His Will. And if I happen to die on that table with that little wire stuck in me, and the Doctor chattering away, well- that won’t be so bad. I will wake up in Paradise with my best friend beside me- my Confidant, my Advocate, and my love: Mom. No, that wouldn’t be so bad, at all.

I’ll talk to y’all soon!:)Picture 725

I love you Mom!
I love you Mom!