A really important organization with lovely people. Here is my published blog post.
A really important organization with lovely people. Here is my published blog post.
Energy, or lack thereof, is one of the main complaints of all the varied yet connected physical illnesses I have. I honestly don’t remember what energy feels like anymore, except for the brief time when I was on Prednisone. I felt half my age and filled with methamphetamines. The world looked bright, I appreciated every second of being in that world, I felt grandiose, I was so happy to have this reprieve to what I perceived as “back to normal.”
When I had to taper down slowly I understood that this was not a drug to take for a long time. But, I distinctly remember when the drug disappeared from my body. Similar to the colorful, glorious leaves in Autumn slipping slowing to the ground until none were left… .. I looked up and saw only dry, miserable lonely branches. I remember specifically the day that the medicine left my body completely, I put my head in my arms and sobbed. There was an old movie called “Cocoon,” where elderly people were given the gift of youth for a short time, their bodies replenished, their illnesses healed, their faces back to their youthful selves. They seemed so happy until the potion wore off.
Of course the potion wore off, doesn’t it always? Aging is inevitable, loss of hearing, sight, lack of energy. I have been without that energy, that youthful quality for over seven years now but not just from aging gracefully, I could handle that. I am lying in bed with my back twisted, the heating pad behind me, feeling quite sorry for myself for actually being disappointed that I had to cancel a dentist appointment because of back pain. If that’s not pathetic, what is? It was a place to go, to get out of bed, leave the house and drive, to talk to new people, nice people, unknown people.Who understands this except other people with these disorders?
I blame my Thyroid (Hashimoto’s Thyroiditis) and Fibromyalgia for my lack of energy yet I blame the nasty, hateful people around me for draining me, for stripping me of happy energy for my soul. They are not to blame, however, I blame myself for allowing them to do that. I control me. This is my responsibility, not their responsibility. Let them rip each other apart if they want to, I don’t have to be involved with it anymore. That is my choice.
I will control whatever energy I have left. Physically and Spiritually.
To my fellow Eppiglottis Sufferers,
Here are some answers to questions you have asked me:
1) YES you CAN get Eppiglottitis AGAIN and I’m sorry. ( I have had it twice )
2) There is no way to prevent it. If you found a way, please contact me immediately.
3) Yes, it causes unbearable pain.
4) I worry as soon as my throat tickles much less hurts.
5) “Calling Eppiglottitis A Bitch Is A Vast Understatement” is my most sought after and popular blog post.
6) No, I never had my throat/breathing problems/occur but if you have trouble breathing,
go to the Emergency Room or call for an ambulance. Do NOT take chances.
7) No, you cannot “SEE IT” looking down your throat. It is below the throat and a doctor will have to “scope you.”
(don’t ask.) Okay, fine, he or she will have to thread a tube through your nose so the doctor can see what is happening down there.
The first time I had it my ENT (Ear, Nose and Throat Specialist) said “How the hell did you get THAT?” Gee, thanks, Doc.
8) Yes, I too, live in constant fear of getting it again.
9) Other doctors? I have been told if I get it again (UGH) to see an Infectious Disease Specialist.
10) It hurts so MUCH because it is incredibly painful to swallow and you have to swallow, lying on your stomach and spitting into a bowl is an idea but not a solution.
11) I feel your pain and your anxiety and I hope this will be an Eppiglottitis free year for us all.
12) Yes, I do have Fibromyalgia and an auto-immune disease (Hashimoto’s Thyroiditis) but apparently there is NO connection.
13) and Yes, if there is interest, I will consider starting a group on-line.
Feel free to keep those questions coming and to share your own miserable experiences, believe me I can relate to them all!
GOOD LUCK FOR A PAIN FREE WINTER!
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.
I am NOT a Doctor. I may see a lot of Doctors but in no way am I one. I don’t pretend to be one. However, I am a patient, a chronic pain patient and I believe I know a whole lot more, personally, about these subjects than some Doctors do. Sorry, but it is true. This is only what I THINK, only what I FEEL and only what I have EXPERIENCED. For those who have read earlier posts about my dealings with Fibromyalgia, Hashimoto’s Thyroiditis and Menopause, this is different; I’ve never once put my own theories down on (computer) paper. Also, for the young woman who responded to a post saying she will check out Fibromyalgia even though her Doctor said “He didn’t believe in it” YOU GO GIRL!
I hope this will take the five or more years of suffering that I had to go through and help someone; HELPING just one person would make me extremely happy. I mean that from my heart. I think there is a correlation with the above- mentioned diseases/changes, at least for me there was, especially with Thyroid Disease and Fibromyalgia.
I went through Menopause about five years ago, it wasn’t too bad, I had the usual symptoms but it wasn’t anything I couldn’t bare. I think that Menopause was the catalyst to all these (bad) changes in my body. After being in menopause, I went to my annual physical where my Internist did the usual blood work. When the results came back, for the first time in my life, I had an underactive thyroid. (Thyroid disease DOES run in my family, both my mother and sister have it.) I was put on Synthroid (my opinion ONLY: I use brand name, NOT the generic.) My symptoms were chronic pain, muscle pain, severe aches and pain, and extreme fatigue. My own quote: ” I felt like I had the flu without the fever.” That is what I felt like day in and day out. I thought the Synthroid (for my underactive thyroid) would help but it never did. For months I was in bed feeling worse and worse, my said Internist said “there is nothing further I can do for you” and walked out of the room leaving me inside, on the examining table, sobbing. True story.
She finally referred me to a Rheumatologist who looked at me and said I had “Scoliosis” and that with my thyroid disease (an auto-immune disease: Hashimoto’s Thyroiditis) I should be prepared to get OTHER auto-immune diseases. Gee, thanks. There was no mention of Fibromyalgia and since when did I have Scoliosis? Whatever.
I felt horrible, chronic pain, muscle pain, joint pain, I could barely get out of bed. I won’t even mention the doctor ( he gets lower case on purpose!) that I went to who treated me with very DANGEROUS drugs, I will spare you that. I have Fibromyalgia and I really do think, there may be a connection between Thyroid disease and Fibromyalgia. AGAIN, I am not a doctor. However, I recently read about a new study where they are trying to see if T3 levels are linked to Fibromyalgia. (Promising!?)
Please, if you are experiencing all the symptoms I mentioned, don’t let an ignorant doctor make you feel like a fool. You know YOUR body best. Keep fighting, keep researching and, go to a good Rheumatologist, this is the Doctor that you need for Fibromyalgia. I have a friend who has a Thyroid condition like me (Hashimoto’s Thyroiditis) and a severe case of Fibromyalgia and she only goes to an Endocrinologist. Big Mistake but she will not listen to me. Don’t be like her. I just want to help. If you do see a Doctor that scoffs at Fibromyalgia and doesn’t believe in it: leave, do not stay. Check out your Doctor on-line, I chose mine from a list that said he believed in Fibromyalgia, treated it and patients loved him. I am one of his biggest fans. You deserve this too. Good luck.
The best friends in my life have common traits: warmth, kindness and the gift of caring deeply. They are all people who I can rely on without a single doubt; that is something very important to me. Some people have a big family to fill these roles; I have my friends.
I met one friend when our children were six, they are now eighteen. Two years ago, in the dairy aisle between the orange juice and yogurt of our local store, I took a chance and impulsively asked her if she would like to go for coffee one day. I didn’t have to worry, she said she “would absolutely love to” with a big goofy grin. Since that day we have seen each other at least once a week at our favorite diner, we talk daily and we e-mail. When she thinks I look wan and tired, she tells me to sit, when she thinks I am not feeling well enough SHE begs off and reschedules.
I’ve also had a best friend for thirty-five years, we met at work after I graduated college. We’ve been through so much together that our friendship is practically tenured. We have gone without talking for months on end, if not years because she disappears emotionally. I tried to break up with her but when I thought of the word ‘best friend,’ I saw her sheepish face and her emotional handicaps. I don’t understand why she does it and neither does she but I accept it and we work at our friendship. No-one said friendships are always easy.
I was two when my other friend was born and we were inseparable for the first eight years of our lives. We were childhood friends, bound together by foundation, emotional glue. We grew apart, with different interests and different locations yet there was never a birthday when we didn’t send each other a card. I got married and had kids and lived in Boston, she had Springsteen tickets and a new boyfriend. Even though we may not see each other for years there is an emotional connection and joy built into our foundation, like red bricks for a building. If I needed her, she would be there for me in one second, no questions asked and I would do the same for her.
I have best friends on line who support me and whom I support in our chronic pain journeys; we give each other all that we can and it is always enough. Saying that you understand, you can relate, is a gift that we inherently have. Everyone is equal here and safe. There is one person I consider a ‘best friend that I have not yet met.’ I trust her advice, love her honesty, intelligence and wit not to mention our shared love of everything sweet. I have a friend on-line that I call my ‘twin’, another that I call ‘my little sister’ and one I refer to as ‘the mother hen.’ There is a friend on another coast that I would go to if she gave a seminar, not thinking twice that I had never met her in person. These friends on-line are important in my life; we send each other messages of support, and soft, gentle hugs that you feel in your heart and they cause no pain.
These women are in my home with me on my laptop, helping me when I am down, congratulating me when I feel better, always available for a question. We are a group of people with a common thread of pain, sharing support, advice and friendship. We understand what others are going through because we are there ourselves. We are not just friends; we are a circle of women, connected; another way of saying family.
Fibromyalgia Awareness Day is May 12, but I bet mostly people who suffer from this debilitating illness know that. There are people, fellow doctors even, who still think this is all in our heads. That IS the most insulting thing of all. Do you think we would choose this way of life? On purpose? Do you think that we would want to feel pain in every muscle and joint in our bodies for the fun of it? Maybe we just want attention, is that what you think? Do you know that I was diagnosed with two chronic illnesses within a matter of months and that menopause was the catalyst? Did you know that it was menopause that turned my body inside out and sideways, plumped up my lower belly and shattered my metabolism? Do you know I eat less than the average child but I don’t lose weight and walking around the block twice is considered a work out?
I am going tomorrow to my third Rheumatologist to see what he has to say. He’s local, convenient and since I have had such different points of view from previous doctors I’d like to add yet another opinion to my massively, confused, Fibro Fog memory. That is if I can remember what we talk about which is as likely to happen as Christmas in July. I will try though, I will write things down, I will do intensive listening. I want to hear what you have to say. I wonder if you realize that a Fibromyalgia patient making an appointment to see you is not simple at all? It isn’t, we have to get there too and that is always a work in progress.
Did you know I saw a famous Rheumatologist for years, only to find out later, that the strong, immunosuppressant medications he prescribed could have destroyed me? That the medications he prescribed for me in his fancy office with his “Best Doctor Awards” on his walls, are only supposed to be used to protect a vital, organ? I didn’t know that either until another Doctor, actually two, told me.
Awareness is not just acknowledging a disease or many diseases; it is also imperative to take the accompanying emotional distress that it brings too. It’s no longer just me, it’s me and my shadow. We bring baggage, physical and emotional because many of us have dealt with this elusive, enigma of a disease for many years. Please, bear with us.
Even if you mean the best, you might not want to say “I know how you feel” because unless you are a patient, you don’t. You can’t walk in my aching shoes, the soles of my feet are rigid, hurt and are on fire, right to the top of my head that aches at times with horrendous headaches, pounding me like turbulent waves on stoic rocks. Are you aware, Doctors, that when some of you treat us chronic patients like drug seeking heroin addicts you demean us? You take away any sense of self-respect that we once had in the past? We know you try to help us but please understand how we feel. We feel pain, we just want some relief, once in a while when we need it the most. Try and understand that, we’re not looking for a quick high or to be comatose on life-altering drugs. We just want to be able to breathe without pain for a short time, ONLY, when we need it the most.
I’ll leave you with one thought. We know you try to help make us feel better. Just remember a moment of compassion, a light hand on our shoulder, an extra second of your smile means a lot, especially when we feel we have so little. If your son or daughter had the same disease and our same symptoms, would you treat him or her any differently? If you have to think about it, please consider treating us, like you would them.
Thank you very much for your time.
my head is aching, laser like thunder striking inside my brain and down the right side of my face in a fast repetitive motion. don’t move, there, up, left, stay still. darts are being thrown directly into my eye by this rapid fire machine gun. a special hateful drop is given to me at the end for my shattered eye, throwing me, head first, down the crooked, chipped stairs straight to a migraine in progress. doctor had to cut iris, no anasthesia and it was right near the nerves of my eye. lucky us fibromyalagia patients come prepared, had one old pain pill in my crusty, gray bag that has too many confusing pockets. the medicine did nothing. i have been suffering for too long, in twenty years, my dr. boasts he has never had a patient like me before. i feel like i should at least win a prize or break down and cry uncontrollably. maybe both.
i am finally home in bed now but my right eye is glued shut and i am not allowed to open this eye tonight. i am cold and have winter blankets trying to protect me from pain and chills but they don’t do a great job, yet they are trying so hard. blame me, i cry, blame me. i am the arbiter of all diseases chronic and unknown and erratic, unusual, the “rarely happens to……” it is not surprising that i don’t i feel special; tonight i have plenty of pity. problems with my eyes, ears, tmj, chronic pain, joint pain, foot pain, all the time. struggling not to become one with the symptoms but i feel like i’m wrestling with myself in thick, mixture of quicksand and mud. once in a while i want to just sink deep and let my breath come out slowly and simply float on top. i am tired of fighting, i’m tired of the pain. i just want the pain concerto to cease playing. tonight i feel pain on my pain. if my head wasn’t above the blankets i would hide beneath them, though crying is difficult with just one eye.
who is this young stranger i ask from three feet and thirty years back. the one that used to shimmy in tight jeans and black leotards and confidence amid conversations of the psyche and e.e.cummings and the book review section of the ny times. i was a traveling girl until they clipped our wings; but most of all i was a dreamer.
my dog is sleeping peacefully on my feet. i woke up at 4 am today, perhaps with nerves but also with an incredibly optimistic attitude. optimism kicked me again in the face like a feisty pony named speed. i didn’t see the pain coming, speed kicked me from behind and sent me flying to the ground bruising every bone. every already aching bone and muscle.
i have all these strange, out of the ordinary afflictions but special is not something i feel. now i feel sad and sulky and in miserable pain. music which usually calms me grates on my raw nerves. stop complaining, i admonish, this is not life-threatening but it is painful and lonely as all hell. i miss my husband’s reassuring voice and soft, gentle hugs. i know i can survive on my own, always knew that, but it is nicer when he is there beside me, and not on a business trip, gently reaching for my hand. i miss normalcy if i even remember what that feels like.
i look forward to slow down the grumbling monster that is the pain in my head and shooting down half my face. why am i not normal. why are there bizarre afflictions attracted to me like bees to golden honey. i am too tired to shoo them away because i have been robbed of energy. so they stay, circling me, viscious black buzzards landing only for their meal and my life.
I’m cold, terribly cold and I am not even outside in the twenty inches of snow we have. I’m in my bed with four comforters, a heating pad for my neck and shoulders and my feet are still freezing. I need to find those fuzzy socks that help tame the frozen beasts that are my irregular toes.
I’ve had Fibromyalgia for about five years now. In all this time I have tried many different medications and I have seen two or three Rheumatologists. Still, no relief. I am taking Savella and I am on the maximum dose and I swear it did work for a while but now…..nothing. Does this happen with Fibromyalgia? I also keep getting new symptoms like my hands and elbows and legs cramping in the middle of the night, symptoms that I was unfamiliar with but are now constant. I don’t understand this illness; perhaps nobody does.
Does Fibromyalgia encompass every symptom that has ever been heard of? Is it progressive? Why do I have more symptoms now than I did five years ago? I don’t know what to do. I don’t know which doctor to trust, if any. I also have an auto-immune disease called Hashimoto’s Thyroiditis which complicates my overall condition. I’m not feeling too lucky today; I’m just feeling sad, with no hope.
I have read countless books and articles, each one of them bringing a little piece to the puzzle but none of them fitting together to make a full-fledged picture. Ask ten doctors advice, you get ten different opinions. If you are lucky to get a doctor that doesn’t roll their eyes in disbelief, you consider that a win.
I would be open to new kinds of treatment , massage? acupuncture? diet? but I am not sure where to start. Not only do I not know where to start, I can’t pay for it even if I did. Everyone “means well” and adds their opinion: my mother says I should “just get out of bed and exercise more” when she doesn’t realize that getting out of bed is in itself is a painful exercise. My husband thinks I should go back on auto-immune drugs but I’m the one getting all the side effects and chemicals. Nothing seems to work. Nothing.
The only people who understand me are the people I meet in Fibromyalgia/Chronic illness chat rooms. I fantasize of a cure, an Oprah A-Ha moment but know that is unrealistic. I don’t like being the mom that has to be dropped off at the door of college presentations for my son and daughter, so I can sit down. I don’t like being the mom that sleeps a lot, when I can, and groans walking up and down our staircase.
I could easily start weeping but stopping would be that much harder.
A Gift For You, A Gift For Me
I’ve always wanted to make a difference in someone’s life. I’m not talking about the usual suspects like my children or my husband. I’ve always thought about people who have influenced me, people who hold a special place in my own heart. Just recently I met a friend through the Fibromyalgia/Chronic Pain site on Facebook. The ladies in this “special” club have bonded in a way that no-one can possibly imagine. Perhaps we should call it “The Sisterhood of Pain.” I noticed that one of the young women had a quote from the “Phantom Tollboth” on her page, a book I know well. It turns out that this young lady was obsessed with the book; she loved it dearly and it was very special to her and her daughter. I just happen to know the author of the book, Norton Juster, very well. He’s a family friend, he was at our wedding, we see him, from time to time, when we visit my in-law’s. I asked my father-in-law to buy the book for Lyn and have Norton Juster autograph it for her. I didn’t tell Lyn, I lied and told her I wanted her address to send her a card. A couple of weeks later the autographed book and my card arrived in her mailbox. It turned out that it arrived when she was having a particularly difficult day. She was THRILLED and she was so thankful for the gift. She also said that I was a really nice person, that I was special and had made a difference in her life, that I held a special place in her heart. I was happy I could give her a gift, happier that she gave me a gift too.