Bimbo in Limbo

I am going to start writing and hopefully the rest will come in a timely fashion. Like a soldier,  a robot, a clear cylinder. I feel too tired to write, too tired to read, television is exhausting and eating is a chore.  Whoa. Stop. Who wrote that?  Not the “me” that has fantasized in the past about orange cupcakes or pink coconut snowballs; not the “me” who has a huge collection of brownies and frosted cupcakes downstairs. Untouched. Some other me. Some patient me. Some released patient from the hospital me.  Some impatient patient me. I am dull, I am lifeless. Boring. Not at my best. I feel nothing; I am too tired to feel.

I need to sit down and concentrate in order to eat something. I need to look at the time and actually say, “it’s been five hours since I have eaten, I should get a bite to eat and something to drink. Who am I and how long will this last?  Did I leave part of myself in the hospital room? When will I come home? I did not eat for an entire two weeks because of my intense throat/ epiglottis pain.  All that suffering and misery and I only lost 3 pounds. There’s got to be something so wrong with that but it is true. Is it my thyroid tired and limping along? Post-menopausal, post 50-something, dead batteries?  Not that I really care. Not that I can do anything about it. It just is the way it is, for me. For now, for a while. Whatever.

I am not sick but I am not well, I am not happy nor am I sad. I am just a blob on the bed surrounded by too many blankets and dirty dishes. There’s a bright strawberry jello snack pack at my side and a cart full of different beverages, the jello is the only color in the room. I’m not thirsty but I’m supposed to drink so I don’t get dehydrated. Is  “dehydrated” the new buzz word used often in the last few years? We didn’t get dehydrated when we were kids, playing in the afternoon soon, in the heat, with no sunscreen or baseball caps. Where was dehydration then? Nothing makes sense to me.

The mail is still in the mailbox I haven’t bothered to go out to the street and get it. That would require putting more clothing on and shoes too. Shoes, why bother? It’s cold and wet and raining and everything is gray, not black or white just way too much gray. Everywhere. Endlessly. All rain, all the time. Rain and more rain.

I am The Wizard of Oz before the color kicks in, I am pre- munchkinland, post dead witch. I am flat, one-dimensional, white bread. I don’t listen to music with joy anymore because it hurts my head. I don’t dance for joy because I do not feel joyful. I lack affect.

I am in a state of in between but I don’t know the parameters of either side. Once I’ve fallen over the edge I will know that I have gone too far but for the time being, limbo is my life. I should care about this but I don’t. I should be surprised or concerned at this plastic shell but I am not. I am not shiny and new, I just don’t have the effort inside me to care right about now.

Eventually, something will happen, either good or bad. Until then, I wait, and I try to care but I don’t.

Hashimoto’s Thyroiditis and Fibromyalgia # 2

1/11/10

UGH. DOUBLE UGH.

As some of you know, I have Hashimoto’s Thyroiditis which even though it sounds like a special on a dinner menu is an auto immune disease. Before being treated for that, I was formerly diagnosed with  Fibromyalgia.   My Endocrinologist gave me Synthroid when, after menopause, I was diagnosed with an underactive thyroid.   Synthroid brought my thyroid levels back to a normal range but I still felt absolutely horrible.   Months and months later I found my way to a Rheumatologist who diagnosed me with Fibromyalgia and prescribed Cymbalta. I still felt horrible and about a year later I found my guru Dr. who is the Head of Auto Immune Diseases and Rheumatology at a NY hospital.  I think I might be in love with him… he’s a genius.

I  take Plaquannel every day.  And folic acid.  Oh, and methotrexate with a high dose of Vitamin D, twice a week. It pretty much takes me out of commission 4 days of the week  because my stomach rages against the methotrexate for two days each time I take it.  I take Cymbalta for the Fibromyalgia (which I may or may not have) and an anti-depressant used for anxiety issues. I am my own chemical compound. I was also on Prednisone which at high doses makes you feel incredible, high, and young and when you lower it significantly and slowly, you feel like you are in the movie “Cocoon” where the elderly first are given a special potion to feel young and fabulous and later on it goes away and they feel old and horrible again. Heartbreaking but true.  I’m not proud of all the medications I have to take but I am not ashamed either.

According to my guru Dr. in the city “Fibromyalgia is a lazy diagnosis.”  His theory is that anyone with an auto-immune disease like mine will feel achy, fatigued and have muscle pain.  To me, the patient, I don’t care what you call it, as long as you can help me feel better.

It took two complete years to even get on the right track of my initial diagnosis and while I think I am on the right track, it doesn’t mean that I feel swell all the time. It means I feel better and have learned to handle and predict certain situations. I am also 53 and not 23 and that does make a significant difference. Somewhere in this medical mystery of mine, I have had many broken  bones, sprains and torn ligaments;  I think there is a connection with the Hashimoto’s but not definitively.  All I know is that  it hurts and takes a very long time to heal.

My experience with the above urges me to say the following: If you feel that something is wrong, believe it. My internist didn’t believe me at all and actually left the office in a huff when I started crying from all the pain. Go to different doctors for their opinions. Don’t be scared that Dr. Jones will be insulted if you see Dr. Stevens. Nobody cares. Hardest but most important of all, believe that you will get better! You may not be perfect but you will be better and you do need patience for that.  Keep trying and keep believing that you will not always feel this bad. Believe me, I am still learning  and relearning that lesson every single day.

Good Luck!