A really important organization with lovely people. Here is my published blog post.
A really important organization with lovely people. Here is my published blog post.
Not having a good thyroid-fibromyalgia-hashimoto’s thyroiditis day. That’s the thing with these stupid chronic, auto-immune, thyroid diseases, you can feel great one day and like crappy crackers the next. I knew it, I jinxed myself with that Pollyanna positive post a few days ago. I am aching all over, and for once, I even made an effort to go outside to do an errand instead of surrendering to my soft pink fleece blanket and baby blue down comforter that were inviting me to stay in bed. I’m back in there now, its night-time and I just pulled on my old mint green night-shirt, from Victoria’s Secret, (so huge and not sexy) that has snowflakes on it and I’m cranky. I posted a comment on a website before where other people were moaning and groaning about how they felt and I just joined in with them because sometimes you need a break. They understood how I was feeling and that is exactly what I wanted.
Did it cure my aches and pains? No. Did it make my sluggishness disappear? Of course not. Will it banish my throbbing headache? No. But, it gave me an outlet just like this, to vent because sometimes that’s all you have left. I am here with a spouse who is watching football downstairs and who does NOT HEAR me, our kids are in college drinking beer and cheap vodka, old friends have deserted us, and we are getting older by the minute.
I’m feeling lonely or alone, maybe both and the only things keeping me company now are the tears welling up in my eyes and my dog. I’m tired but I know, feeling this way, I couldn’t fall asleep and it’s too damn early anyway, it’s not even 9:00 PM. I’d be up cruising my little cottage at 2:00AM if I went to bed now. I’m just in a funk, maybe I’m having a pity party, that’s alright too. I don’t know and I don’t care. It will, most probably, only last a few hours so I will soothe myself with music, darn, I wish I liked wine but I hate it, beer too. I don’t want to go on a food binge, that got me into deep trouble the other night, it was not pretty. All I can say is: Baked Lays (sour cream and onion) Jarlsberg cheese and crackers, toast with butter and honey, a Ring Ding, canned pears in heavy syrup and that’s all after dinner. It was not a pretty sight.
No more eating, no more eyes tearing, still have a headache and my face feels like a sledgehammer has taken up residence in my brain. Things don’t stay the same, it will get better or it will get worse. I really don’t know which way it will go. 50/50 at best. Hey, we all have these days and nights, we have no choice. If we didn’t have the bad, I guess we wouldn’t appreciate the good, at least that’s what I’ve heard.
I am in a world by myself of chronic pain, fibromyalgia and thyroid disease, yet I coexist with many friends. Friends that have similar ailments, some have the same, others that defy diagnoses but the symptoms define them. I have learned we are more than the sum of our symptoms but I have not yet learned exactly how to deal with it emotionally.
There don’t seem to be medications that I can take (or haven’t been told about) by the myriad of doctors that I go to help relieve my pain. First stop, the Rheumatologist for my autoimmune thyroid disease known as Hashimoto’s Thyroiditis and for Fibromyalgia. After that, to the Endocrinologist for thyroid levels. My Internist, the Pulmonologist, the Opthamologist to check for narrow-angled glaucoma. I have seen more “ologists” than a healthy eighty-five year old person and I am not complaining for a second; these are the facts.
If people ask me how I feel, I am at a loss to describe the symptoms. The latest comparison I can make is The Tin Man from the Wizard of Oz, without the oil can. I am stiff, I hurt, I move at a slow pace. It is very hard for me to get in a car and get out, these are not smooth actions, often I am holding on and heaving myself up; sometimes once is not enough. I have balance issues too. I keep trying new medications but haven’t taken one yet that truly works. These are immunosuppressant drugs that are supposed to help relieve the muscle pain and aches I feel all the time, the operative words are “supposed to.” They also take eight long weeks before they kick in…..I wait a lot.
Tomorrow, to “get me back on track” before starting the newest of medications that I don’t even have yet, I am supposed to take Prednisone, 3 days of 30 mg, 3 days of 20 mg, 3 days of 10 mg. I have been on Prednisone before and I have mixed feelings about it. While I had no bad side effects before, there is always that risk. The emotional risk, to me, is even harder. I felt SO GOOD on Prednisone when I needed it last year that when I started lowering the dosage, I actually broke down and cried. In a previous blog I referred to it as if I was in the old movie “Cocoon” where older people feel young again from a miracle and then suddenly a short time later they are themselves again, old, aching, and hurting badly.
Tonight I feel anxious, tired, discouraged and down. I think once I am able to sleep, I will sleep deeply. It is always a game: whether to nap or work through it. Today, I was determined to stay awake. I am deeply worried about a friend who is very, very sick with cancer. I was too upset to nap so I decided to push through the pain and get busy. I got myself out of the bedroom and went to the kitchen to bake home-made banana bread for my family. Mushy bananas, a little vanilla, some chocolate chips, some raisins and the basics, to occupy my mind, my hands, and most importantly, my heart.
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.
I was thrilled to be going with my family and in-laws on a 5 day cruise to Bermuda, courtesy of my very generous in-laws. It brought back all sorts of memories that I hadn’t thought about for many, many years. I remember that 12 years ago my parents treated my sister’s family and my family for a cruise to Bermuda. It was a family vacation complete with my parents, my sister’s family and us, and most importantly “the cousins.” Four little fresh faces, all shiny with excitement, a boy and a girl for both my sister and I: 5, 7, 8, and 10 who love and adore each other. After that trip, they would always be connected and they still are very much so today.
I have a photo that I cherish of my sister and I that shows our happy faces and wind-swept hair. Our brown hair blends together and although we look completely different, this photo just smiled “sisters” and love.
I remember 12 years ago we were all on deck as the boat pulled away from the dock. There was yelling and whistling and waving, and total excitement; sometimes I wish life could have stopped at that joyous moment but we go on anyway as time wills us, forces us to do.
Twelve years later, my husband’s parents (who felt sorry for us) treated the four of us and them to a 5 day treasure of a vacation, again to Bermuda. What a difference time makes and it passes so quickly you barely have a moment to stop and think. This time, when we pulled away from the dock, I went outside to look and cheer, and I couldn’t. I didn’t even think of this as a factor when I went outside but as soon as the boat started moving, I felt sad. It was so emotionally charged for me that it was surprising to me and so unsettling. I couldn’t speak, couldn’t even cry, I just felt numb yet able to feel this horrible and powerful feeling of complete sadness. I went inside as fast as I could, not walking, not skipping but running as fast as my aching body let me. The skyline looked empty with the devastation of the twin towers. How could I enjoy the view when the twin towers were not there? They were in the background of our first trip; there was nothing now.
It also reminded me in a painful way that my dad was not with us; he passed away 9 years ago but the pain felt fresh and raw and stabbed me at different moments, like it did years ago. Time does not change that type of pain, it hides, it tries to fool you, but once someone dies that is special to you, life as you have known it, is gone forever.
It’s been a long year, of unemployment for my husband and the pain of Fibromyalgia and Hashimoto’s Thyroiditis for me. Add narrow angled glaucoma, TMJ, chronic pain, and a connected tissue disorder and other unresolved medical problems and that has been my life for the last, long, 4 years.
Back home now, we are enmeshed in back to school errands. Our son is a Senior in HS this year, our daughter is a Junior in HS. Next year there will be another change, that will be wonderful and heartbreaking and empowering and positive. Our son will leave for college, our daughter a year after. I am cherishing every moment that we spend together but I know that there will not be enough time for me. This vacation created new memories for the four of us, ordering room service, having dinner together every night, laughing. These are the memories I will cling to, in my heart, forever. Time goes by and I with it, looking forward, looking back, trying to ride the waves as they rise and fall, rise and fall.