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.

Oprah, Please Reconsider, It’s Not TOO Late

According to Keirsey, Oprah Winfrey may be a T...

Image via Wikipedia

Dear Oprah,

NOOOOO, DON’T GO!!! The countdown of shows is really affecting me. I’m an ultimate, ultimate viewer and I’m not asking for a ticket or a vacation to Australia or a car or even the 3-pack of beauty products you had on today’s show. Just one thing, don’t go. PLEASE don’t go. Change your mind. ( It is NOT a sign of weakness but of strength.) I’ve gone through every part of my life with you, you were the only one who had the grace of mind and spirit to say “Stay at home Moms have the toughest jobs.” Thank you for that. When people looked at us stay at home moms with real attitude, I didn’t argue, I knew what the right thing was for me and my family, and yes, you admired it. It made me feel validated, it made me feel like a beautiful queen. I have two amazing children that I love and that I like, they are my gifts to the world. I know, without a shadow of a doubt, that the world will be a better place because of them.

I was your viewing audience every day from home. I was happy to just watch your “Favorite Things” shows because I loved watching the audience members get so happy. I can’t imagine how you felt, that times a billion, I’m sure. I know you are not disappearing and I have watched OWN but it’s not the same. I taped your show every day for years and when the kids were young and finally in bed I would watch your show, relax, learn, be entertained and I would feel better.

So, my teacher and friend from afar, I am trying to say good-bye graciously because you always want what your friends truly want. But, I confess, there’s a 5 year old inside of me that has thrown herself on the floor, kicking and screaming with disappointment and sadness and stubborness.

I can’t wait to see the final show and at the same time I really don’t want to. I’m obsessing that if I am away for a few days my DVR won’t record and there are only so many times I can check.  I will cry, probably hysterically, but I am not ashamed of that. There really is no such thing as the “ugly cry.”  But, you know that. The last few weeks I have cried spontaneously as my son decided on the college of his choice and while I know he will be so happy, it will never be the same after this. Change. I’m not good with it, I admit it. I know I have no choice to accept change; I’ve learned that I need 24-48 hours to adjust, but it’s just not working with your show ending. I’m having a hard time accepting it (can you tell?)

Oprah, I was always the one in the viewing audience that was totally confused when you said “Do what you love to do.” I spent years figuring that out, until I went back in time and remembered my love for writing in High School. That was a really long time ago and I had NOT written much since 1978. I took a chance and started a blog and I was so afraid. I did it though, slowly and while it isn’t bringing in the money (yet?) I am doing something I love. Because of you. You were a comfort to my heart, you were the teacher of my soul.

Goodbye Oprah. G-d bless you for all the things you have given us.  I don’t need to wait till the last show, I’m doing the “ugly cry” now, and that’s okay.

I will miss you dearly.

Love,

Your biggest fan

Hibernationnow

http://hibernationnow.wordpress.com