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.

How Fibromyalgia Stole The One True Love Of My Life

Ocean waves

Ocean waves (Photo credit: This Is A Wake Up Call)

Damn this disease. Yes, I know it’s a chronic illness and I have lived with it for over six years, I try not to complain, but that doesn’t work 100 percent. I deal with it the best way I can and each day is different. It has limited MANY outside activities and it has given me pain, incredible weakness and undeniable imbalance. I can handle pain, it’s bearable most of  the time and when it is really bad take pain medications. It’s the “flare-ups” that plague us, those really bad times that are triggered from….pretty much anything.

I am miserable that I cannot open a jar  anymore though I do not have Rheumatoid Arthritis. That is good news so why am I so weak that I have to ask my daughter to do it for me? My doctor’s prescription : “Squeeze a rubber ball.” Really? This does not give me very much confidence but I try to remember to squeeze the ball, when I remember. Remember? That needs a whole paragraph on its own.

Anyone who has Fibromyalgia will know exactly what I mean: the dreaded “Fibro-Fog.” Remembering to do anything with Fibromyalgia is a diseases in itself. I can recognize a face of someone I went to elementary school in an instant but everything else is cloudy. My family/friends are dealing with a person who never remembers what they say.  Imagine how frustrating it is for them and how embarrassing it is for me. “I’ve told you that five times already…” even I, would get incredibly impatient. I’ve seen one too many “eye rolls from my teenagers” to last a lifetime as any parent of teenagers can relate to. It’s horrible to live in a Fibro Fog, cloudy, all the time. That never gets better and it’s probably the one that is hardest for me. Everyone forgets things occassionally but all the time? It’s not Alzheimers (I’ve had a brain scan) it is from Fibromyalgia.

When we save enough money to go on vacation, I always think: the ocean. I have loved the ocean since I was a little girl. I remember being taught how to jump the waves, when to jump over and when to hold your nose and dive underneath. It was a delicate balance, thrilling and exciting, sure sometimes you made a mistake but that was part of the fun too. You just never knew which way the mysterious and unpredictable ocean would go.

I was thrilled when a few days ago my daughter and I were at the ocean. We rode the waves, the water was a bit rough and as I noticed we were getting pulled by the tide, I motioned her to start swimming back. We had drifted off a ways and I wanted us to go back to the direction where we had dropped our sandals and towels. I went first and then the most devastating thing happened to me. I could not get up and out of the water. Truly. I tried six or seven times to get back up and I could not do it, I tried to stand and before I got my balance another wave would pull me down again, over and over. It was in the shallowest part too, tiny pebbles, sand, strong waves at water’s edge. I couldn’t do it by myself and I felt so discouraged, so sad.  Luckily, my daughter saw me and offered me a hand and I was able to get up.

I couldn’t get out of the water on my own. I found this to be so depressing, so disheartening. My one true love, the ocean, my ideal place to live, had been stolen by Fibroymyalgia. It had taken away my strength, my independence, my joy. My favorite place, my favorite time, my favorite fantasy to dream about for the future, disappeared because of this illness. People ask if Fibromyalgia gets worse?  I  say yes, in more ways than one. It affects your body, your limbs and your pain; but more importantly it visciously tears at your heart, over and over again.

Eppiglottitis, Esophagus, Hernia? HELP!

Cirugìa de hiato, HERNIA PARA ESOFAGICA

Cirugìa de hiato, HERNIA PARA ESOFAGICA (Photo credit: Antonio@GDL)

Last week I went for the dreaded barium test (forgive me if I gag just thinking about it) although it wasn’t as bad as I thought it would be. I imagined slugging  the entire thick, chalky mess down in two or three large gulps and finishing it but that was not the case. Luckily it was more like take two sips and swallow. This type was not even that thick. It’s not that I would order it in a restaurant but it was manageable. I highly recommend the radiologist who was soothing and comforting and told me “it wasn’t a big deal.” Thank you.

When I finished Dr. Radiologist came out and told me I had a hernia in my esophagus. Huh? Yes I had a hernia in my esophagus which was fairly common and probably could account for me swallowing the wrong way, quite often and coughing a lot. But, oh, my epiglottitis followers, what automatically came to mind??? There has to be a connection between the eppiglottitis and esophagus hernia, no? It seemed genius to me. Could this be a clue in solving the mysteriously painful illness that we know so much about? Of course I thought I was brilliant and could tell my people (YOU, my fellow eppiglottitis sufferers)  that we could prevent eppiglottits in the future but sadly that is not the case as far as I know.

I have an appointment scheduled with my ENT (ear, nose and throat specialist) on Monday and yes, I will beg him for a correlation even though I’m pretty sure there isn’t one. I just wanted to give all of us some hope. If there is ANY I will post the results on Monday, I PROMISE. Wouldn’t you think there would be a connection? I mean it does sound nutty enough.

Leave it to me to have the weird diagnosis, but believe me I am NOT complaining. With all the testing that they did, I am gloriously happy that the only thing wrong with me is this hernia. After losing forty pounds, having digestive issues (really bad digestive issues) and looking gaunt and pale as a ghost, I can cheerfully deal with this. I’m having a colonoscopy in a few weeks, maybe an endoscopy is needed as well? I have no idea. But if there is any hope of a connection between the dreaded eppiglottitis and this hernia in my esophagus, I want to be the first to tell you. And, you know I will. Let’s keep the faith although even I know the odds are against us. Let’s wish each other LUCK. We need it.

Plinky Prompt: 5 Million Dollars For Charity-Where Would It GO?

Cancer Sucks

Cancer Sucks (Photo credit: when i was a bird)

Charitable Donations

One Million to Pediatric Cancer

One Million to Young Adult Cancer -In Honor of the wonderful Suleika Jahoud

One Million to Heart Sisters for Carolyn Thomas’ Research on Heart Attacks for Women

Two Million for Cancer Research for Treatment, Cure, Prevention

PFAM- The Stress of Having a Chronic Illness- Fibromyalgia

Fibromyalgia Awareness

Fibromyalgia Awareness (Photo credit: Kindreds Page)

When you have Fibromyalgia stress is part of your life, it’s your face staring back at you next to the definition of “stress” in the dictionary. Wait. What? What were we talking about? I don’t remember, it couldn’t have been too important. It doesn’t matter. I had a good morning, the pain in my arms only woke me up twice during the night and it wasn’t bad at all getting out of bed if you don’t include the dizziness that happened when I tried to get up.  I actually was able to go out and do an errand, even two. My energy level was okay for an hour and a half to two hours! Then, the boat that is my life, sank like the Titanic. There were no survivors. That always happens. I should get used to it but I can’t. Maybe it’s Fibro Fog or pure denial but when I crash in the afternoon, every afternoon, I crumple like a rag doll and need to lie down. I can barely make it up the stairs on my own, the stair rail helps me up as I plod along slowly. It happens every single day. Maybe Fibro Fog and forgetting are better than acknowledging my sad, interrupted life.

My stomach aches, It’s probably IBS, or irritable bowel syndrome as we Fibro patients know, we get pain THERE too, it’s a classic symptom. Stress only makes it worse, where did it come from? We are not exactly sure, some say it’s from Fibromyalglia, some say it’s a gastrointerology disease, other say stress. No matter what, we can’t win.We can run to the bathroom with stabbing pain or basically not go at all. Pain all around. You can’t help it, there is nothing you can do but wait it out. Just an added bonus of Fibromyalgia, just one more question mark that will never be answered. It limits where we can go and when, which in itself is stressful. We have to plan or not plan at the last moment. Friends who understand call in the morning and ask “are we still on?” or “let’s see how you feel in the morning.” For every friend like that, there are two friends plus family members thinking or saying, “you should just exercise/eat gluten free/lose weight/gain weight/go holistic/ try acupuncture, get a massage etc. They are so strong in their feelings and I know it is out of love but I have stopped trying to defend myself and just let them talk as much as they want. Since it’s the 100th time, I don’t fight anymore, now I just pretend to listen.

This insidious illness has not only interrupted our lives, the lives we once had, but for me, divided it into two. Before Fibromyalgia and After. We mourn our old selves to a point, some people still hope for a cure, but I don’t. I need to focus on my new reality, the pills, the pain, the realization that I cannot do many things that I was able to do in the past. That sometimes I feel like half a mother, half a wife, that I have the energy of a cockroach, let me correct that, the energy of a nearly dead cockroach because those things can be feisty.

I am not feisty anymore but I once was. Those were the early days when I could describe myself, without hesitation, as HAPPY but also young. I remember saying that, though conjuring up the feeling now is so much harder. Luckily, when I had my children I did not have Fibromyalgia but they don’t remember all the running around, playing, swinging and rough housing on the floor we did because they were so young. That to me, is heart breaking. Ask them now, as young adults and I’m sure they will remember “Mommy is in bed, she doesn’t feel well” or “Mommy is sleeping.” Ask any mother who has Fibromyalgia if that’s not the tipping point for her. It was for me.You want to help your children until you become old. Fibromyalgia makes you old, makes you feel old and useless a good deal of the time. The stress of life continues and it waits for no one especially us. There’s not only physical pain with those of us with Fibro but emotional pain too. We are not who we used to be. Does anyone ever think of that?  We are half of who we were. People with Fibromyalgia don’t get a “do-over” we don’t even get a chance.

Even My Face Hurts

alone

alone (Photo credit: dragonflaiii)

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.

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

Fibromyalgia And Flunking The Sobriety Test

Sunset Police Car

Sunset Police Car (Photo credit: Wikipedia)

Calm down, it’s not what you think. I can’t handle alcohol on ANY level, never could. Way back in my college days my friends would order a pitcher of beer and a Coke for me.  My now 20-year-old son’s advice is that I didn’t try hard enough. I should have just kept drinking because “it gets better.”  I’m sorry. I’m apparently a disappointment to my daughter and husband too.

One would think with my distaste for alcohol I would potentially have NO trouble with the law. That might not be the case. I went to my doctor, months ago, because I had consistent tingling in my legs and my internist (of course) referred me to a neurologist. The appointment was made and I forgot about it while my husband and I vacationed in Rhode Island for a few days. We had bright, sunny skies, we dug our toes into the silky sand, and ate raspberry scones, home-made sticky baked french toast for breakfast every day with a bowl of fresh blueberries and inexpensive lobster rolls at night. We napped daily.

One day I remember walking towards our car to my husband and then……. I was down……. I was on the floor, lying down, face down and have no idea what happened. Did I black out? Maybe. My knees and legs were bloody and filled with gravel but luckily my face was in good shape, apparently at the last-minute my husband said my arm came up instinctively to save my face. I hadn’t slipped on anything, there were no stones to tumble on, there was no logical reason this happened. I hadn’t twisted my ankle or sprained any ligament. I just went down. I wasn’t happy. Nobody was happy.

Upon my return I was even more nervous about seeing the neurologist who had ordered a plethora of tests including a CAT scan. My brain was perfect, the tests were perfect. Except for one. I could not, literally could NOT, walk a straight line. He told me I flunked that one outright and he had no idea why. He also felt there was no need to pursue it after seeing my brain scan. It’s true that a symptom of Fibromyalgia is imbalance but drunken-looking imbalance? Let’s say I was tired and driving sloppily, imagine a police car pulling me over and asking me to walk a straight line, maybe they would even give me a do-over since my breathalyzer test was normal…. I swear I’d be in the slammer pretty darn fast. Hopefully, you can still make one phone call. Even better, do you think I should get a doctor’s note?

I Need Help: Fibromyalgia-TMJ

closed TMJ

It’s a pain like no other, hard to describe, impossible to treat, at least for me. Falling under the Fibromyalgia umbrella, TMJ is like lightning striking your ear and jaw straight through your brain and head. It kept me up all night; no pain-killer helped it, no heating pad, ice, soft foods.

The pain shoots, there is no warming and no treatment that helps; I didn’t eat any hard foods yesterday. My jaw usually pops and goes back into its socket; I live with that. I was a bit worried about the Presidential election but not enough to be awakened all through the night in utter agony as if I had been shocked by electrical wires, moaning and groaning all night long. I was restless, weary and I hurt so badly; I toss and turn to see if lying a different way will help. Nothing works.

Even though I have had Fibromyalgia for years, the varied symptoms (maybe because of the cold weather?) are worse now. I wish I could scream out loud and get it all out of my system but I can barely open my mouth. I try not to speak, to hold my lips a certain way; I pretend I am a model who is posing for a sculptor who is doing an impression of me in burnt-red clay. I can’t move my lips or my mouth for him to get the correct shape so I try to relax my mouth, my muscles until I find a single spot that doesn’t make me cry out loud. I try desperately to hold that same place so I don’t scream; I am just asking for tolerable not even for feeling good.

I have dealt with many of the other symptoms of Fibromyalglia in an accepting way as possible but nothing has been as urgently painful as this. I’ve been to ENT’s (Ear, Nose and Throat Specialists) convinced I have had flaming ear infections until the diagnosis was always the same. TMJ.  Now, I no longer go to the doctor, I know what it is and I huddle under blankets, drink liquids through a pink striped straw and pray for the pain to subside.

Those of us with this chronic pain disease have so many different symptoms, yet there is usually one or two that affect us the most. This is one of them for me. Pain, out of nowhere, unexpected, usually starting in the middle of the night and continuing as long it takes. I’ve tried the mouth guards (sort of), I’ve tried heating pads, I’ve tried deep breathing and meditating. TMJ lurks in the quiet of my brain and body and jumps out of the darkness to scare me with its razor-sharp accuracy. It attacks with no warning, no signals. Unlike migraines, there are no warning signs. This, I find hard to deal with, hard to surrender to so much pain for however long it decides to stay. For once, i am helpless in this situation, I feel disempowered and small, the pain has caught up to me and it is winning.

Clown Underpants

Hospital Bed

Hospital Bed (Photo credit: Indiana Public Media)

Last week, when the nurse in the hospital gave me a warmed blue blanket I thought she was an angel from heaven. I had already been waiting three hours for my 15 minute procedure in the outpatient unit in our local hospital. I was there for a Cystoscopy, having a camera, pretty much shoved up your bladder and beyond. I had already been given 10mg of Valium orally; (why do they tell you, you aren’t supposed to take a sip of water or anything at home when they offer you these drugs with water in the hospital like candy at a Halloween party?)

The nurse did get permission from the arrogant anesthesiologist who took my disclaimer of incredibly painful TMJ, another side effect from Fibromyalgia, with a shrug of his shoulders and a basic “not my problem” attitude. Kudos to my doctor who apparently switched anesthesiologist so a lovely Doctor replaced him and she used a different drug and didn’t have to wire my jaw open wide, thank you! You were kind, gentle and I remember your sweet, assuring smile that I would be dopey and sleepy in about……..and that was it.

Next thing I knew I was in some hall with my name being called way too loudly. “Laurie, Laurie” are you awake, wake up!” the nurses shouted and I had no idea where I was or even who I was. After saying “Where am I?” not at all original, I remember I uttered my husband’s name and someone went to get him. Apparently the procedure was over and I was in the hallway.  The same nurse brought me huge, mesh “clown” underpants which, I found hysterical. Let’s just blame it on the drugs. (but really they were SO funny!) I wish I hadn’t thrown them away!

Oh, those memories just come flooding back, pun intended. No one told me or prepared me that after a cystoscopy I would get cramping and pain and bleeding and would need the same supplies I needed when I still had my cycle; that pain was familiar. It’s funny how when we try to recreate happiness it’s hard to do but pain? We remember it vividly.

I wasn’t hungry anymore or thirsty, I was just tired and the only thing that interested me was a cup of coffee.  My pounding head felt as if a boomerang was bouncing between each lobe of my brain, what’s left of it that is. With Fibromyalgia comes “Fibro Fog” I don’t need to define if for those of you who have it, but for others who don’t know what it is: it’s an extended brain freeze. It bothers us much more than you, even if you have to hear repeated stories. It makes us feel stupid, old, daft and like we have dementia. We forget what we have done five minutes ago, it’s sad. Forgive us and try to be kind.

Finally home, I crawled into our bed, Lexi, my dog, climbing on and lying across my feet, her way to say she cares, not leaving my side. She licked each finger, I stroked her fur. Grateful to be home, to be in bed, I thanked my guardian angels for keeping me safe, I held one silver guardian angel key chain in my hand. Most of all, I told my husband how much I love him and how grateful I am for all that he does for me and to the nurse that brought me the warm blue blanket: thank you, it’s the little things that make all the difference. I appreciate all of my friends, especially, my on-line friends who support me and care for me without ever meeting me. You mean the world to me too!