Fibromyalgia 2013 – UPDATE

#Fibro - Awareness Day

#Fibro – Awareness Day (Photo credit: sand625)

I’m being a bad patient. Yes, I’m confessing. I have a doctor’s appointment with a new rheumy (as us Fibro patients like to call them) a new rheumatologist in about a week and I think I am going to postpone it. Again. My old rheumatologist who I do indeed love, takes about three hours to get there and back, usually more, and this one is only twenty minutes away, I’m getting lazy. However, this is the height of flu season and I really do not want to expose myself to the “flu factory” that is my doctor’s office. It is not just one office, it’s two buildings of sick people for every specialty in the world. It’s a factory for any illness you can think of. In addition to having Fibromyalgia, I also have an auto-immune disease of the thyroid called Hashimoto’s Thyroiditis. Just glance at me and I will catch it.

This is a tough choice. Had I been feeling extremely poorly now with Fibro I would surely go for the appointment but the fact is I’m feeling pretty good. (I know, don’t jinx it) It’s the first time in many years that I am NOT complaining about aches, pains, moving or walking. SHUT UP! my friends will say but no, I cannot. Of course, I still have Fibro Fog to the extreme (really scary) and I am on enough medication to kill a horse but this last combination of drugs apparently is doing a little something-something. You guys understand…

Sure, I suffer from the tender points, but I don’t even count them, they are as natural to me as getting up in the middle of the night to pee. I accept it. And yes, I have all the other symptoms of Fibromyalgia: IBS, tingling, headaches, “yada yada yada*” but overall I feel better. I’m not asking for fabulous, I’m just satisfied with better. Better to a Fibromyalgia patient is like a miracle, BUT it is a miracle for however long it lasts. I think a lot of it has to do with my endorphins being raised quite a lot. Wish I could say it was from exercise but let’s not get too crazy here. It’s the result of medication, and no, not-self medication.

Right now, I’m just appreciating feeling a little different, in a positive way. I want my Fibro friends, and the newbie Fibrosmyalgia patients to know that it is, indeed possible. Don’t give up hope, maybe one day you will feel better too with the right combination of medicine. Keep fighting. I know there is no cure but you need to trust your doctor, or team of doctors and they need to believe in YOU.

For now, until it changes, I am happy, fine, content. Do I think it will stay like this? Probably not. Do I hope so, definitely: yes. But, as we all know with Fibro, we have absolutely no control over anything, which really is the hardest part of all.

Let’s wish each other a whole lot of luck.

If you have questions for me, especially those who are new to Fibromyalgia, feel free to ask, I’m happy to help.

*yada, yada, yada from Seinfeld

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PAIN 11/11/11

pain
Pain
...Hurt...

I AM convinced that menopause was the catalyst for my getting a thyroid disorder, actually an auto-immune thyroid disorder called Hashimoto’s Thyroiditis and Fibromyalgia which crept in….no, more like, crashed into my body right after menopause and never left. It also changed me from a happy person to a somewhat content person. I am more anxious, I have more fear. If PMS was a wading pool, menopause for me, was like a tsunami.

I had been to doctor after doctor, half of them not having a clue what was wrong with me (including my beloved internist who walked out of the examining room in frustration and left me crying inside, alone.) There was a rheumatologist who said I had “scoliosis” and that my auto-immune disease of the thyroid would leave me “wide open for other auto-immune diseases.” Thanks, really helpful and informative not to mention it scared me half to death. I had another rheumatologist who put me on cymbalta and when it did not help said she could do no more and a maniac rheumatologist who put me on various, toxic medicines that are generally given ONLY to transplant patients so that they don’t reject a new organ. He also let me stay on one particularly noxious medicine that gave me gastrointestinal problems so badly I couldn’t leave my bathroom for a month. When I called him after a month and told him what was happening, he said just “give it another month.” A month later, weak and dehydrated I had an office appointment and he said “my bad, that was my mistake.” YOU THINK?

It’s hard to remember “Before” menopause since I am convinced that menopause and fibromyalgia both robbed me of my memory. What was I saying? Why did I come up here? What did I want to remember? Frankly, its terrifying. I can remember verbatim the words spoken in my husband’s and my first fight but what I did yesterday? Not easy at all. It also robbed me of all the energy I ever had, poured it out of my body with an invisible pump and threw it in a large body of water far away from here. It could be fueling the energy of a little known country for all that I know…..

I consider myself a sick woman now, not a healthy one. My Fibromyalgia flare-ups have been so long and pronounced it’s like they are my new constant. I don’t remember when I didn’t ache in agony. Movement of every kind makes me groan out loud. I’m not asking for sympathy or even help, I am hoping for understanding. Please, just remember, I HURT all the time, whether you believe in this chronic pain disease or not. It is my unhappy life, not yours; do not judge. I don’t complain to you, so please don’t offer suggestions. If I want your opinion, truly, I will ask for it. You have NO idea what I go through so don’t even think about saying “you know how I feel.” Trust me, you don’t.

The Beauty Of My Fibromyalgia

Red berries

Image by freefotouk via Flickr

My husband came home from town and told me that he heard an update about a mutual friend; that she was at the end of her life.  She has ALS, (formerly called Lou Gehrig’s disease) a horrible, disease that affects thousands of people every year. I felt terrible for her and her family and know how hard that disease is for everybody.  I pictured her in her wheelchair with her beautifully spun white hair coiled behind her in an old-fashioned bun, the bun that my grandmother in her nineties used to wear every day; held together with old-fashioned black bobby pins. There was one difference, the woman in this story is not in her nineties, not even close, she is 43.

I have Fibromyalgia and Hashimoto’s Thyroiditis and before you write me letters about how pain is all equal and that pain is pain and we have our right to our pain I will tell you this: the stripping of your body, one by one and of all your faculties, is something I would not trade for and neither would you. The last vestige of communication this woman, this YOUNG woman had been struggling was to try to write something with her twisted hand on a computer generated machine. Fibromyalgia pain IS pain. I know I have pain, I understand it and I can communicate it, I can’t solve it. When there is nothing that helps me feel better, at least I can verbalize this, at least I can try to focus on a pretty picture of strong red berries on a simple branch. When I clutch the banister to be able to go up and down stairs, I am mostly doing it myself. If I can’t and need a hand, I will ask for it and accept it and will be able to have the dignity to say “Thank You.” I can ask my daughter about her day or my husband’s first day of work or my son’s admission to colleges. I am able to do that and am thankful for it.

My husband, the most patient man on earth, gets irritated and annoyed with me when he asks me questions about the type of pain I am in. He is direct, like a prosecutor: “is it muscular?” is it in your joints?”  “does it stab, burn, tingle, come in waves?”  “is it sharp, is it dull, does the pain move around?” I’ve always been vague in my answers about how I feel physically because I am the type of person who can’t verbalize my symptoms well. Fibromyalgia is defined as having pain all over and that is what I have. Is it muscular? Yes, Is it your joints? Yes, It is all over and hard to differentiate from one Doctor’s appointment to another, Yes. We also have Fibro Fog, our endearing term for forgetfulness, makes us forget how things were yesterday compared with today.

Fibromyalgia changes every day, sometimes every hour; there were times when I was sure I had a really bad virus but my Doctor just told me they are “flare-ups.” My mother was concerned because I was sick so often, I never knew I had flare-ups, I didn’t know what flare-ups were; no-one ever told me.

I am not saying that your pain or her pain or his pain is any less uncomfortable because it is not life threatening. Listen to me: I am saying that pain is pain, and that it can be unbearable and it does affect your emotions and social skills. But, at least it does not deprive me, me personally, of the ability to still connect with my loved ones and friends and I am able to communicate.

There is no competition. Pain is pain is pain. My friend who is dying from cancer is fighting every day as she has for five years before her breast cancer metastized into brain cancer. This is not a game where whose pain, whose life is worse. This is MY opinion, own it or reject as you please. I do have enough pain to consider myself suffering. I may not have control over my pain but at least I still have control of all my faculties.

We are all at risk for everything, like everyone else in the world. There is so much sadness: health, terrorism, wars, economy,  that sometimes I need to focus on just by breathing, in and out, in and out.  Sometimes I need to slap myself out of my self-pity and give thanks for the things I can do and more importantly send blessings to those who are less fortunate than I am. Now.

5 Things I Am Looking Forward to This Week

english: This is the american HBO brand logo. ...

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Monday and a New Week
The end of a very long Holiday weekend. Thanksgiving was lovely but it was a lot of work and ended too soon. That happens when you plan something far in advance; once the day arrives, it seems to go so quickly, in one blurry moment. After the Holiday there are three more long, cold, days (I refuse to shop, even if I could, on these wild shopping sales days). Also, last week was HELL, this week is a redo. Everything last week felt depressing and gloomy. Been there, done that. Not going to let that happen again.

In Treatment (HBO)
Looking forward to watching the In Treatment episodes that I DVR. Love the show. I do miss Gina from Season One but love the characters of Jesse and Sunil, in particular. Debra Winger also plays a patient. This is a television show that is worth watching. It’s quick, intense and draws you in to the life of Paul Weston, a psychiatrist (on tv) and his patients.

Lunch/Dinner
Having lunch with my friend Sarah sometime this week. Always nice to catch up with good friends. We talk about going different places to eat but we always end up at our favorite diner. Perhaps date night with my hubby, just going out sans kids, to regroup and support one another.

Facebook Friends
Reconnecting with my supportive Facebook Friends on-line. I’ve found a bunch of incredibly nice and understanding group of friends that share the same illness I have: Fibromyalgia and Hashimoto’s Thyroiditis (an auto-immune disease) These women have become very important to me; we all care about each other. There is no judging, no one cares about race, religion, ethnicity, ANYTHING. We know what we feel and how and nobody in the outside world can truly understand it. But, we know you try…..

Closure
A few loose threads dangling in our lives; we may not get good news but at least we should have some definitive answers. After that we can give each other a push and move on……again.

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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.