PFAM: You Call Them: CURVEBALLS?

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.

Fibro Frights And Fatal Fantasies

 

Image by FlickrJunkie via Flickr

 

I messed up and didn’t realize that the PFAM’s ( Patients For A Moment) blog carnival deadline was by midnight tonight. The subject was fear. I’m wondering if deep inside I just didn’t feel up to writing, competing, finishing or if I was dissassocating myself from the project. I was going to talk about the web of anxiety and how it feels when it starts to swell in my stomach. It always starts in my stomach beginning with a slight twinge, quickly advancing to panic and anxiety. My arms and legs feel tingly and somehow not connected to my body, I am alternately hot and cold or both together.

The first time that queasy sensation started was the summer before my freshmen year at college.  I was eating dinner with my family in a fancy Italian restaurant in Queens, NY.  I couldn’t eat, I couldn’t speak, it was the first time I had ever felt anxious and I remember calling it “cold dread.” How could I explain this new, horrible feeling when I had never experienced it before? How do you name something you do not know?

Those fearful sensations in my body became like a close cousin to me. We lived as if we were conjoined; I could not separate reality from frightful fantasies. It was something that I have learned to live with and deal with.  I started with a tiny germ of truth and blew it up out of proportion. There was no stopping my obsessive worrying, nothing helped: warm milk, hot baths, reading a book, distraction.  I remember a time when I was sitting in the trolley in Boston and thought what I had whispered to my friend was overheard by someone else and I became overwhelmed and frightened. What if? What if? It became a wakeful nightmare for me.  I did a lot of catastrophizing back then and even now, once in a while, it still tries to creep into my brain. I need to forcefully push it away, as if an intruder was about to enter and I had to slam the door hard, with brute force.  Sometimes that is enough, sometimes it isn’t.

My cousin’s stomach ache could be pancreatic cancer,  my sister’s low throaty voice could mean she was manic, my narrow-angled glaucoma could make me blind in a second.  I worked with a hot-headed, explosive employee that I thought, for sure, would bring a gun to a grievance meeting and shoot us all. I remember strategically seating myself closest to the door, just in case. I lived in a world of tragedy, of horrendous outcomes, death, madness, cancer, stroke, coma, terrorist attacks, murder, mayhem and more. “Health and welfare” is what I worry about as I tried to succinctly wrap it up like an adorned Christmas present, perfect silver wrapping with a tight red bow.

The truth of the matter is that now we DO live in a fearful world and something COULD happen.  Fear perpetuates fear and even while  I am writing this down I feel the first fingers of anxiety like a gray mouse with darting eyes. I take deep cleansing breathes. I ask myself questions: “what are the odds of that happening?” The media doesn’t help: “Don’t go to public places when you are traveling in Europe” What? Of course we would go to public  places if we were in Europe. Is too much information just too much?  I refuse to watch the news on TV before I go to sleep.  The only thing we can do is try to push the worry aside and live as normally as we can; even if it takes enormous strength and effort. Carpe Diem as they said at Boston College where I worked: Seize The Day, as best as you can.