Clown Underpants

Hospital Bed (Photo credit: Indiana Public Media)

Last week, when the nurse in the hospital gave me a warmed blue blanket I thought she was an angel from heaven. I had already been waiting three hours for my 15 minute procedure in the outpatient unit in our local hospital. I was there for a Cystoscopy, having a camera, pretty much shoved up your bladder and beyond. I had already been given 10mg of Valium orally; (why do they tell you, you aren’t supposed to take a sip of water or anything at home when they offer you these drugs with water in the hospital like candy at a Halloween party?)

The nurse did get permission from the arrogant anesthesiologist who took my disclaimer of incredibly painful TMJ, another side effect from Fibromyalgia, with a shrug of his shoulders and a basic “not my problem” attitude. Kudos to my doctor who apparently switched anesthesiologist so a lovely Doctor replaced him and she used a different drug and didn’t have to wire my jaw open wide, thank you! You were kind, gentle and I remember your sweet, assuring smile that I would be dopey and sleepy in about……..and that was it.

Next thing I knew I was in some hall with my name being called way too loudly. “Laurie, Laurie” are you awake, wake up!” the nurses shouted and I had no idea where I was or even who I was. After saying “Where am I?” not at all original, I remember I uttered my husband’s name and someone went to get him. Apparently the procedure was over and I was in the hallway.  The same nurse brought me huge, mesh “clown” underpants which, I found hysterical. Let’s just blame it on the drugs. (but really they were SO funny!) I wish I hadn’t thrown them away!

Oh, those memories just come flooding back, pun intended. No one told me or prepared me that after a cystoscopy I would get cramping and pain and bleeding and would need the same supplies I needed when I still had my cycle; that pain was familiar. It’s funny how when we try to recreate happiness it’s hard to do but pain? We remember it vividly.

I wasn’t hungry anymore or thirsty, I was just tired and the only thing that interested me was a cup of coffee.  My pounding head felt as if a boomerang was bouncing between each lobe of my brain, what’s left of it that is. With Fibromyalgia comes “Fibro Fog” I don’t need to define if for those of you who have it, but for others who don’t know what it is: it’s an extended brain freeze. It bothers us much more than you, even if you have to hear repeated stories. It makes us feel stupid, old, daft and like we have dementia. We forget what we have done five minutes ago, it’s sad. Forgive us and try to be kind.

Finally home, I crawled into our bed, Lexi, my dog, climbing on and lying across my feet, her way to say she cares, not leaving my side. She licked each finger, I stroked her fur. Grateful to be home, to be in bed, I thanked my guardian angels for keeping me safe, I held one silver guardian angel key chain in my hand. Most of all, I told my husband how much I love him and how grateful I am for all that he does for me and to the nurse that brought me the warm blue blanket: thank you, it’s the little things that make all the difference. I appreciate all of my friends, especially, my on-line friends who support me and care for me without ever meeting me. You mean the world to me too!

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.