National Invisible Illness Week: September 9 – 15th

Fibromyalgia Eye

Fibromyalgia Eye (Photo credit: Vinally2010)

Who am I?  Can you see me ? Over here. The woman with the curly brown hair, green eyes, the one sitting down on the bench inside Target or the supermarket. No, I’m not lazy, I’m tired. Did I sleep well? No, but I don’t usually sleep well even though I have medication for that. Do I feel rested when I wake up, eager to take on the world. Well, no but I am older. How old? I’ll be 57 in two weeks. Well, it might not sound old to you, to me it’s ancient.

I have a childhood friend who claims she has Fibromyalglia  but refuses to see a rheumatologist. What? Yes, she sees a general doctor, one who knows about endocrinology for her thyroid.Do YOU see the point? Right, me either.  I have tried so hard to help her feel better but I’ve stopped, she obviously doesn’t want to feel better, she wants to complain.I grew up with her, no other bond, my mother remembers she’s been complaining since she was five, I remember it too.

I had to go to neurologist after I suddenly fell, on my back and test after test came out perfectly normal except for one: I had no balance. He had me walk a straight line in his office as if he was a police officer and I was a drunken driver. I zig -zagged on that line as if I had an overdose of margaritas and tequila sunrises and amaretto sours, mixed together in a huge bathtub big enough to fill a college party.

“Hmm” he said, “you have no balance” I nodded my head, up and down, ‘yes, I said, I know’ but he shrugged his shoulders and sent me away and said “I was fine.” If I was fine, why didn’t I have any balance? “Oh, it’s probably your Fibromyalgia…”he said. I’ve found now that when doctors don’t know what you have and they know you have Fibromyalgia that’s the answer they give. Nobody wants to take the time to figure it out, they don’t care, half of them don’t believe in the diagnosis anyway; since we don’t have many answers let’s all lump the various symptoms together toss them into a bag and label them Fibromyalgia. That’s easy.

What’s not easy is not having a cure and there really no potential in site. I happen to have a wonderful rheumatologist in the city and he is not only incredibly knowledgeable, he also really cares and that is an amazing combination and very hard to find. I don’t have as much pain as others but I have no energy. I can do one or two errands depending on the day and I never know in advance. It’s hard to make plans. Close friends understand, others don’t, want to know who your true friends are? Oh, it’s not hard at all.

I have a handicapped parking sticker for my county, you should see the dirty looks I get sometimes when I try to get out of the car. People judge on no information, they don’t ask, they immediately judge. They don’t notice the pain in my eyes from sitting in my car trying to stand up? No. So they notice the pain in the back of my eyes so I don’t cry out?  I don’t look “sick” is that it? That’s what I thought.Do not judge me or my handicapped sticker, I don’t judge you.

There it is, I don’t look sick therefore I must not be sick? Wrong. If my legs were in casts or my arms and shoulders too perhaps you would understand, but just because my pain is in the inside doesn’t mean I’m not sick. Sometimes, I wish I could show you my pain, physically. because emotionally, you’ve already done your very best to make me feel like worse than I already do. Maybe you could stick my whole body in plaster, maybe then you would understand.

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Living With Pain Vs. Pain For The First Time.

Wisdom tooth1

Wisdom tooth1 (Photo credit: Wikipedia)

My 19-year-old daughter had her lower two wisdom teeth removed this morning. They gave her a little laughing gas while we kept her company until her surgeon appeared (20 minutes later) and then he turned on the laughing gas way up high. After, he sedated her so she fell asleep and when she awakened she was the most giggly girl I have seen since she was about five. It was delightful to see a glimpse of my grown-up daughter back in time when her defenses hadn’t evolved, her moods were just plain happiness and silliness and she looked at her brother and me lovingly.

Back at home she is still high as a kite but experiences no pain, she refuses to even try to go to sleep even though as her mom, I see she her blue eyes are closing and that she is so tired.  Being her mom I was a nervous wreck last night and I told my son sleepily when he came to wake me up: “they should give anxiety sedation to the moms, not to the teenagers.” Anyone reading this that’s a mom will know exactly what I’m talking about, right?

Having Fibromyalgia, I know what Pain feels like but I’ve known it many times. I’ve had the “dreaded” Eppiglottitis two or three times that is more painful than childbirth and I dread it constantly. Childbirth is no picnic but that’s a different pain. At the end you know that you will get a reward: your new baby so it doesn’t really count as much and it’s a pain you mostly forget. Notice I said mostly. I’ve had broken ankles and broken wrists, I’ve had my tonsils out and my gallbladder removed so I have known pain pretty much early on and often.

I had fallen asleep on my bed for a few minutes today when my daughter woke me up her painful grunts and her cranky face. “It hurts” she whined and I knew that it must. She hadn’t slept and the sedation had all but left her body and she hurt. I brought her back to her bed, removed the cotton from her mouth, got her some raspberry yogurt as requested because she was “hungry” and afterwards helped her to swallow a pain medication that her doctor prescribed.

By the time the medication worked (a good 25 minutes) she moaned and groaned and complained about the pain. I felt the pain as much as she did if not more. Parents, you know… Then I realized something and I asked her “Is this the first time you’ve ever felt pain?” She said yes, quite honestly. The scowl etched on her face forming deep, unhappy lines. I thought to myself, “oh my God, maybe she will have more understanding about what I go through with Fibromyalgia, intense pain, most of the time.”

It seemed like I had always known pain but when I thought back I hadn’t known it until I was a young teenager and tripped over myself in my parent’s living room, causing my ankle to swell up to a deep purple ball and going for an X-ray for confirmation that yes, indeed it was broken. My first cast of many, I was 15, I remember and I was in high school.

It’s not likely that my daughter will be more sympathetic to my pain or even understand it, kids forget things so quickly but at least I know, that she’s never had a frame of reference. Maybe now she will.

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Worrying, Lamb Souvlaki And Pollyanna

Pollyanna (1960 film)

Image via Wikipedia

I’ve had way too many changes in my life in a short period of time and I feel unsettled. Anxiety attacks have crept up on me like the sting of bees approaching quickly, out of nowhere.  I feel anxious, on and off, and I am not too proud to admit it. A lot of people have feelings of anxiety, that’s why there’s medication and breathing, writing and music, and today, cleaning and keeping busy. Usually there are friends to talk to but my dear friend is in England having a great vacation and others don’t really make the effort or are just too busy with their own lives. My worry and I are together, we’re holding hands.

My mom has been sick and I am worried about her; her anxiety is fueling mine. My mother who was always seemed so strong and energetic seems  more vulnerable now, she’s had a horrible year and she’s scared, we both are. I’m “meeting worry half -way” as my old friend, ex-nun, lesbian and former boss used to say. That’s not doing anyone any good. I am scared for my mom and for me,  I think she is too.  My sister is usually the Pollyanna type in the family so I just wrote her and asked how she felt, maybe she can comfort me. I know she is not a worrier, and even though she is extremely positive about these sorts of medical situations I’m not sure it will rub off on me though I hope it does.

I have a wonderful husband, two great kids, a lovable, sweet dog; I have a home to live in and food on the table. So, why am I so unhappy? Better yet, why am I feeling so anxious lately?  I know I am worried about my mom but things have also been changing quickly.  My son graduated High School and is at his second home in Connecticut being a Counselor at his old sleep away camp. I’m told he’s very happy, we haven’t heard from him. I wonder if it will be the same way when he starts college in September but I am not ready to go there mentally yet.

When did fun flee from my life, like people racing out of the water at the mere hint of a shark sighting? What is happening? Last night was different and I was thrilled.  My husband and I went to an old, small, family -owned Greek restaurant, I ate Avgolemono soup (Greek chicken, rice and lemon soup) and pita bread, he ate lamb souvlaki, big, fat, french fries and a salad. Afterwards, we saw the new Woody Allen movie and ran into friends. Throughout the movie I did not worry, I was entertained and charmed by Midnight In Paris. Welcome back, Woody Allen.

Xanax is a prescription medicine that just takes the edge off of being worried, it doesn’t fix things, it smooths the sharp edges like green and blue sea glass. My feet ache, I think I have a broken bone in my left foot, it is hard to walk up stairs, it is hard to walk, it is hard to breathe. There is no way I can hobble around in the city, as planned, I will postpone it until after the X-ray next week and the results of my mother’s tests. More importantly,  I will  “talk” to my deceased father, sending messages and prayers into the dark sky like shiny, silver helium balloons. I hope you are right Pollyanna, I really, truly do.