PFAM: You Call Them: CURVEBALLS?

Weeping Willow

To me, a new symptom is a curveball, it’s a nice term for something that feels so bad. I feel them as gut-wrenching hits to my stomach that makes pain reverberate everywhere. Shocks, starting one place in my body, going through my body.

Here is how it all began: my body fell apart in my late forties and crashed at age fifty with menopause. It wasn’t a horror story or a deep, high-pitched scream of severe decline. I had a few anxiety attacks here and there, a little more intense than PMS and hot flashes more frequent than before but not much drama, no sweaty sheets, no wringing tee-shirts.

In an annual check-up I got the eagerly anticipated diagnosis of an under-active thyroid. Didn’t this mean I could eat what I wanted and the extra pounds would melt away? I thought so, but unfortunately not. I was prescribed Synthroid. I took it for weeks and weeks with no change. I was sleeping all day and everything hurt: my teeth, muscles, joints and nails. But, as I was told, thyroid symptoms need time to adjust and so I was a good patient and waited for it to go away. It didn’t.

Three months later I still had aches and pains all over; I described it as having the flu without the temperature. I was back in my Internist‘s office weeping on the table, unable to swing my legs to a seated position; telling her I felt horrible. I couldn’t move, I couldn’t walk, all I did was sleep and ache, non-stop. My Internist looked straight through me,  as if there weren’t tears dripping through my swollen green eyes. She turned away, clicked on her fashionable high heels and left the room saying under her breath yet still audible” I can’t do anything more for you.” My friend and I call her The Ice Princess.

She sent me to see a Rheumatologist in her big medical group ( factory). This doctor told me I had scoliosis (the one thing I do not have) and that I had an auto-immune disease which would lead me wide open to catch all other auto-immune diseases so I went home and googled it. I did indeed have an auto-immune disease of the thyroid called Hashimoto’s Thyroiditis: the solution?  Synthroid. I was on it already so why was I still so tired, and in pain every waking moment. I couldn’t sleep deeply either anymore. Nothing made sense to me, all the doctors said completely different things and no one, no one, acknowledged my pain.

I then went to three other Rheumatologists before finally one of them came up with a disease called Fibromyalgia. “I believe you have been misdiagnosed” the second Rheumatologist said.  A chill of joy went up my supposedly not-s0-straight-spine. A new diagnosis? A new cure? YES!!! I will be cured. Thank you! I was deliriously happy for a few moments until she then told me there was no cure. Curveball? How about complete devastation?  And so, it started again, new drugs, all different kinds, some helped a little, some almost killed me, some were radical and only used to save organs when a transplant was required  others were benign but NOT helpful at all. One kept me in a bathroom for two straight months unable to leave my house.

With the firm diagnosis of Fibromyalgia I knew I was in a whole, new world of chronic pain and no cure. New symptoms would appear from time to time and I would consider those the worst curveballs of all. I would groan when my legs starting hurting so badly I cried out in pain; some were illnesses that were old yet I had never associated them together, others were new and I would groan and moan at yet another symptom of some elusive yet particularly painful, widespread disease. I had always had a small bladder so I never thought about the fact that I had to pee often until the diagnosis of Interstitial Cystitis was given to me, hair loss, body aches, muscle aches and those pesky stomach aches I used to get time after time? The ones that made me get all cramped and bloated and then doubled over with intense pain?  IBS, also listed under  symptoms of Fibromyalgia. Each individual symptom that I thought lived alone, now lived within a deeper, bigger context.

As strange as it may seem, having a chronic illness composed of all these connected parts made me feel better mentally if not physically. I thought I was an outcast  but now, the diagnosis of all these links put together and given a name made me feel more credible. When I get a new pain, a curveball, if you will, first, I fight. Then, sometimes I cry. After that I do some research and realize yes, this is part of that huge family called Fibromyalgia. Then I understand and accept. Fighting back at the curveballs, the new symptoms, in the long run, doesn’t help. Trust me, I know.

Think of us as strong weeping willow trees that lean and sway with the strength of the wind. We don’t break from the force, we learn, as hard as it is, to lean in and go on.

Who Am I?

Who am I?

Image by stevec77 via Flickr

Am I more than the sum of my symptoms or less?  It started with menopause, the entire disintegration of my body. All of a sudden my thyroid became underactive and I thought I had achieved a state of false bliss. Just add Synthroid and  I will be able to eat AND lose weight at the same time” Well, as it turned out, not exactly. The image of every foodie fat girl eating AND shedding pounds like my hairy mutt sheds her fur was not accurate, I was disappointed. I was  in pain all the time, my favorite phrase: “I feel like I have the flu but without the fever.”  I ended up not just having an underactive thyroid but I had Hashimoto’s Thyroiditis, an auto immune disease of the thyroid, basically my own cells were attacking me. My internist nodded her head and said “there’s really nothing more I can do” and as I lay there sobbing, undressed in the exam room, she clicked on her brown high-heeled shoes turned swiftly and marched out of the room.

One doctor led to another and another all with differing points of view. The second Rheumatologist  diagnosed me with Fibromyalgia but still, my aches and pains continued.

The third hot-shot doctor specialized in RA and Auto-Immune Diseases. “Fibromyalgia” he said, “that’s nothing but a lazy diagnosis.” We treat the auto-immune disease, straight and simple. Of course, not that simple. He started me on Methotrexate which helped but landed me in the hospital for my second bout of Eppiglottitis and possible lung damage. I develped a 24/7 cough, asthma and breathing difficulties, the pain from the Epiglottitis was excruciating. Several prescriptions and an inhaler later I came home.

They stopped the Methotrexate and he put me on Cellcept which worked well, with the exception of intense intestinal distress that forced me to stay in the house (and close to the bathroom for 8 entire weeks). I complained after four weeks and hot-shot ignored me and said “stay on it another four weeks” and like a fool I listened.

If I was rich I would go to the Mayo Clinic but having had no income in a year, that rules that out. One day at a time? How about one moment at a time? Today I stayed in bed, napping and trying to calm my internal self. Part of me wants to kick and scream and fight, the other part is too tired and weak to even imagine it. Along with the aforementioned symptoms I also have narrow-angled glaucoma which is very serious, interstitial cystitis, TMJ and a connective tissue disorder as well as a balance issue. Who have I become? When did all all these symptoms become me?

My latest blood tests come back next week and with it, I hope, will be some helpful information. I am tired of being tired, sick of being sick. I feel horrible when I fall and my two sweet children and darling husband come racing up the stairs to see what happened….again.

Help me, fix me, try me, define me.