FIBROMYALGIA: Now With Added Trigeminal Neuralgia

English: 'A pain stabbed my heart as it did ev...

English: ‘A pain stabbed my heart as it did every time I saw a girl I loved who was going the opposite direction in this too-big world.’ (Photo credit: Wikipedia)

Hey Fibro. Can you hear me? I’m a patient, you’re the chronic illness.

Just pile it on, OK?  Not that you are asking my permission or anything, you’re not. One diagnosis after another, I figure there’s more to come, how can I not think that way? I feel betrayed by my rheumatologist who said it wouldn’t get worse. Yeah, right.  I’m an almost 57 years old, (OLD is the operative word,) woman who is utterly falling apart physically. Nope, not even plateauing. Yesterday afternoon I had an appointment with a neurologist for TMJ, I was referred by a doctor I trust. TMJ  causes a great deal of pain, daggers of sharp pain waking me up in the middle of the night, relentless pain. All a chronic pain patient needs, right?

“I don’t have ANYTHING to do with THAT” “I can’t help you at all, said the young doctor.  I don’t  know why she sent me here, he said, that is not  part of my job.” When things are down, and I am tired and feel sick already, I go down and tears started running down my cheeks. Here was my chance to take away one type of pain, I knew it wasn’t going to take away my Fibromyalgia, my chronic pain, my Imbalance, my sleep disturbances or  up my energy levels but at least I hoped that something, anything could take away one of my many types of pain I have. I asked him to call the referring doctor, really, the only doctor I trust in the world.

He was gone a good fifteen message and I took the time to “pity party,” now sobbing into my hands and getting red and swollen with a drippy nasty face. As Oprah has described it, I did “the ugly cry.” I cried  loud and hard and the people at the desk must have thought I was having  a mental breakdown which in a way I probably was. So, after my cry-fest the doctor comes in and says there has been some progress. “Really?, I thought skeptically” I was still crying and he was not acknowledging that in any way whatsoever. Not one, “I’m sorry you are so upset.” Not a :, “I know this must be difficult for you”, NOTHING. He ignored me. I found that appalling. He looked through me. Thanks, Doc. My internist did that too a long time ago. I remember it in detail, she, I’m sure doesn’t, just part of her busy day. DOCTORS:  Be human, SHOW EMPATHY. PLEASE

He then proceeds to tell me that I have another condition ( as if he forgot a teaspoon of sugar in a recipe) : ANOTHER CHRONIC CONDITION NAMED TRIGEMINAL NUERALGIA AND it has to be addressed immediately, which means another medicine, probably damaging my kidneys and liver so it has to be watched carefully. Blood tests, follow-up visits etc,

Guess what? Not only did I try it for two days but it made me MORE dizzy and light-headed. I missed a festival in town that I was longing to go to, I missed out. Again. So, tonight I stopped. I was supposed to double the dosage today and I said “No way.” I was tripping over everything and I looked and acted drunk, without have had anything alcoholic to drink. I COULD NOT WALK, EVEN WITH MY CANE. I’m taking over control. Got it?

Chuck the new medicine and call the non-empathic doctor who will most likely call in another script and call it a day. But this time, I’m ready and I WILL NOT CRY. I WANT ANSWERS AND NO MORE DRUGS IN MY SYSTEM. TELL ME WHAT TO DO WHEN I GET THE ATTACK, NOT PREVENT IT. NO MORE MEDS! I’M DONE.  I AM IN CONTROL, NOT YOU. ANY QUESTIONS? I’LL BE HAPPY TO ANSWER THEM, OH, AND I WILL LISTEN AND RESPOND BECAUSE EMPATHY IS MY STRONG POINT. LEARN SOMETHING.

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How I Stay Healthy??????

Considered a father of Western medicine, Hippo...

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Give Us A Break……

There’s a fundamental mistake here: you are assuming I am healthy and I’m not. Along with thousands upon thousands of other patients I have a chronic pain disease and an auto-immune disease (not to mention others: IBS, narrow angled glaucoma, interstitial cystitis, painful and swollen joints, flare ups and….oh, is that too much? Because I could continue and I could also go blind instantly but that’s another post altogether.

First off, I am really not complaining just commenting and venting. “It is what it is” and it could be a lot worse: pain is not life threatening so I am grateful for that. TRULY. However, Fibromyalgia and other chronic pain disorders ARE extremely painful (and no it is NOT in our minds.) That is totally insulting. Also, there is little to relieve the pain, at best, and certainly no cure. Live with it? Not comforting. If this affected more men than women you bet there would be more research and no tiptoeing around about pain medication. The latest information frenzy that has all chronic pain patients up in arms (and my mother who saw a show on TV!) is that doctors and the media now are becoming increasingly hysterical about dispensing pain medication to THOSE OF US WHO ARE IN PAIN.

To me, it’s idiotic. I have a Doctor who writes prescriptions for Vicodin like they are gummy bears, lots of gummy bears, but when I tell him I have taken one and it doesn’t seem to help the pain, he insists it’s the only pain reliever he can dispense. Does that make any sense to you? Because, Vicodin itself is highly addictive and he writes prescriptions for them all the time YET he won’t write a prescription for half the amount for something different, like, I don’t know, Tylenol with Codeine? What am I missing here? A different class of pain killers? I am not swallowing pain killers for a high, I have tried Vicodin (one pill) on two separate occasions when I was in dire pain. It. Did. Not. Work.

I’m beginning to feel like the chronic pain community should an old-fashioned revolution. All the patients talk about it but I don’t think all of us have spoken directly to the doctors about it. I have but it does no good. Do you know why other patients are reluctant to be honest and I don’t blame them? Because we have to deal with the raised eyebrow, and the ‘are you a junkie quizzical smirk.’ I want to find a Doctor that HAS Fibromyalgia and see what they say!!

Do you think if we have addictive personalities we will misuse codeine and not Vicodin? I KNOW I don’t have an addictive personality, believe me I would have had plenty of opportunities to have one but it’s just not something I would do, want to do or will ever do. Shouldn’t doctors be able to differentiate patients from junkies?

Think about the Hippocratic (Hypocritical?) Oath that says: “First, Do No Harm.” You are causing harm refusing to treat illnesses that are incredibly painful. How about a different warning label? USE ONLY WHEN IN DIRE PAIN. That works! I don’t know anyone personally who would abuse it but I am sure there is a percentage of people who would abuse anything. Don’t punish us, for them. I certainly wouldn’t want to take anything every day if I didn’t need it. My doctor had me on two different medications to prevent pain that didn’t work and I ASKED if I could stop them, he hesitated and I then convinced him and stopped. I WANTED to use as little medication as possible. Frustrating.

In terms of exercise I walk slowly to try to get exercise and if I had the extra thousands of dollars I would probably buy a membership for a gym that has an indoor pool so I could swim but that’s money a lot of us don’t have lying around. My special diet? I usually eat healthy meals, chicken,veggies, salad, pasta, red meat a couple of times every month or two. However, my special chronic pain diet, for comfort since there is no pain relief usually involves Cadbury Creme Eggs, Yodels and Egg Salad Sandwiches. Sometimes comfort, even though it is not a pain reliever, might just make you feel a little bit better emotionally since no one is trying to help us physically.

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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, Really, Defines An Illness?

12/25/09

We are on a much awaited for vacation in Aruba. I traveled with about 25 different medications in my wash kit. Some of whom I don’t remember why they were prescribed to me but I keep them as if they were a talisman.  I am taking the same medications here for my Hashimoto’s Thyroiditis, an auto immune disease, and a variety of other symptoms, fibromyalgia, a torn ligament, excruciating back spasms from having to wear the dreaded but classic “black boot”of the podiatric and orthopedic world for many months.

Back home, lying in my bed, day after day, I was always tired, achey and filled with pain.  I admit that the plane ride itself was exceedingly painful but I am off that plane now; and I feel ever so fine.

My Dr. a guru in NYC was considering prescribing me (self ) injectable medication, at a much higher dosage than the pill form I still take.   I had been considering it. I had been pondering how much is too much? Wondering if  I was at the half way point for feeling good, by HIS standards, if that wasn’t good enough.  But, what about MY standards? What about my level of pain and misery and feeling , always, like a patient and feeling good enough.

What about the mind/body experience? What happened after I dragged my worn out body, aching foot and excruciating back pain and came here?  I was minus the snow and ice, minus the bedroom I had been living in for almost two years and feeling very sorry for myself. I was determined that this vacation, “if we should be so blessed” would be the start of a new beginning for me. Despite the cane that came crashing on my head during the flight and injuring my eye, this was starting anew.

It was. It is.  So, who really defines what an illness is, a Dr. or the patient?  On the journal I keep for my Dr. at home, 1 being in really bad shape and 10 being something “I can never achieve” at home I am a solid 5, maybe 4.  The same symptoms and diagnosis in a beautiful new environment for a few sun-filled days and I am an 8 if not 9.  Do we look at things differently if we are in a different environment, or do we look at ourselves differently? If there is something beautiful to see does that help beautify the mind and body?  I feel good here, I feel warm here, I feel  something that I haven’t felt in over 2 years; I feel alive. And hopeful.

dedicated to Phylor who makes me think, and wonder.