A really important organization with lovely people. Here is my published blog post.
Earth to me. Earth to me. Calling all hallucinogenic hopefuls down to reality please. Yes, I know, I was one of them. Me, optimistic, me. Funny, quirky, stupid, friggin me. What the hell did I know? DId you believe me? I believed me. I really did until I woke up in reality which was just recently. I used to think of the world as a good place but that stopped a long, long time ago, probably with September 11th. That shook me up and the world still keeps shaking me up and not with good things. I know, I’m a late bloomer and gullible as all heck. There will always be two different “Me’s.” Before and after.
I’m jaded, Jaded and faded and disillusioned. Know what my mother’s advice was to me? “Lower your expectations, “I did. No rah-rah speech from her which is not exactly her style to begin with. My dad used to be Mr. Educational Talk when he was alive, think positive, be optimistic, you can do it if you THINK you can do it. He gave “pep” talks to anyone who would listen and yes he believed it and I tried to believe it too, tried to change. But, at the end of his life he was terribly sick and depressed and didn’t want to get out of bed or listen to his favorite Viennese waltzes that had delighted him all of his life. He was a shadow of himself, a shell of a man, it went so quickly and so slowly at the same time. It’s hard to remember when he was last really happy, I have a photo of his birthday, I treasure that photograph. The birthday candles were lit, he was beaming with joy, but it was many years before his death.
I’ve gone to the dark side. Plain and simple. Life is about love and love is about abandonment. Gone. Hello, I am here. I love you. I now will leave you. Good-bye. You are born alone and you die alone. You should pretty much plan to be alone a lot in your lifetime because no one loves you like your mother or father does, or your spouse/partner. You love your kids more than anything, they are your heart and soul, the true essence of your being but it is not reciprocal. It can’t be. Their children will be the lights of their eyes, you need to stand back and make room for the next generation. You may still be in the picture but not upfront, from now on you are in the background and that is where you will stay, forever.
Remember that post I wrote on feeling blessedly numb and peaceful? Yes, that’s gone, it left as fast as it came. Had to do with children and my dead father and abandonment issues. Just saying the word in my head brings tears to my eyes. Good old abandonment, am I the only nut job that has this umbrella issue? I would bet not. Life is scary sometimes, it’s the truth.
Many limitations from chronic illnesses: Fibromyalgia, Hashimoto Thyroiditis, I can not walk a straight line, my balance is worse than ever, my stamina is non-existent. I need to go into the city for an appointment to see my rheumatologist and I don’t have the strength to get there. Taking the train and a cab seems impossible, hiring a car service is ridiculously expensive and I can’t afford that. So, I keep postponing it which is the worst thing I can do.
I have to suck up my pride and ask my best friend for help, she’s already offered but I am not good at asking for things. I rather help than ask for help. So, today I have to promise myself that I will ask her for a ride to the city, pay for everything and appreciate that I have a friend I can ask albeit begrudgingly. I know I won’t get better, if anything I’m getting worse.
written words copyrighted
Love is not easy, but it is essential. Why do we all go on with our lives? Day after day shuffling our feet, not smiling sometimes for weeks or months, nothing to look forward to, nothing special on the horizon? With so much misery, disease, tragedy, war, incurable illnesses why do we accept it? It comes down to one thing and one thing only: Love. You don’t need a crowd of people to love you, it can be one person or one quirky brown dog, or a petulant cat, maybe a goldfish named Frank, or wildflowers in a garden. We live for love. That is the ultimate dream and if you love one friend and the person loves you back you are incredibly lucky. Everything counts.
Love keeps us going when we want to give up, there’s a thread of love that inspired this blog from my friends. There is love between a group of friends and we have never met, there is a closeness, whose hearts and souls connected on a higher level. We may have originally gotten to know each other by our chronic illnesses, auto-immune diseases or fibromyalgia but that is the last thing we talk about now. If we lived closer to one another, they would be my safe place, my soul sisters. We offer peace, love and kindness to each other, there is no judgment, just support.
I’m not unrealistic I know love isn’t always about happiness, when you love someone so much and they die or move away or just because they grow up and relationships change. Nobody tells you that when you are pregnant, that love also hurts, that love is also loss. Even if they told you, you wouldn’t believe them anyway. When you love your children so much and they walk away as strong, independent adults you are very proud but sometimes, if you are honest, it really hurts. Is it rational? No. It’s purely emotional.
I respect and admire both my children. But, part of love brings with it a searing unavoidable pain and there is nothing you can do about it. Without pain, we wouldn’t know how wonderful love really is. The thread of love, twists and changes, every single day and night. You can’t control it, you can only change yourself and how you deal with the changes, like the waves of a turbulent ocean, strong, beautiful, unpredictable. Unconditional love is for children, it never ends, and I’m sure our children will not understand until they have grown up children of their own.
One day you are holding their hands to cross the street, trading toy cars or having a tea party, watching a shiny red fire truck, or playing dress-up and the next day, or so it seems, they are adults. They are adults you are proud of and cherish but they have their own lives now, and you are not the biggest part of it. “Home” is someplace different now and just because they have a week off doesn’t mean they want to see you. First it’s a shock, then it’s a change but you get used to everything. This was never about guilt. I don’t want you to change for “the next time.” I wanted you to let it go. Growing up sometimes means you can’t always have the last word and sometimes it means letting things go, if not for you, than for me.
“End of conversation. No new conversation.”
I love you, unconditionally with all my heart
Sorry, but if I have to feel it you have to read about it. Oh come on, it’s not that bad. And it’s not like you are being exposed to germs. I mean I can’t send them over the computer even if I wanted to. Which of course I don’t. Except to a few people who have been mean to me in the past, but I won’t mention their names because that would be juvenile. As if I wasn’t. My head hurts, it’s throbbing like a jack hammer inside the front of my brain, I hate it when doctors ask, does it hurt here or here? It friggin hurts in my head, I don’t know which quadrant. You’re the doctor, figure it out.
My throat is sore and I’ve been pretending it’s been allergies for weeks now. I gave up the fight tonight when our son told us he was sure he was getting sick. I surrendered. What else could I do? I happen to have an auto-immune disease (Hashimoto’s Thyroiditis) as well as the old stand by Fibromyalgia so I’m pretty much f—–ed in catching whatever is going around. Those of us with compromised immune systems are…..umm, what’s a nice way to put this…..concerned?
Whatever is going around, here in the USA, is the FLU. Oh, not the flu I got the flu shot for, nope not that one. Apparently the CDC was wrong:
I don’t want to get sick and I don’t want others to get sick, oh and die. People are dying from the flu. DYING. What the heck? Stay home, stay in bed, if you have to go out, I suggest you wear a mask, even if you look like a tool, people will think you are a god or goddess, truly. You will be helping others, perhaps even nominating you for sainthood (I’m really not sure at all how that works). Do unto others…and all that. Most importantly, wash your hands constantly like someone with OCD and keep Purell handy. Also, when you open a door in one of those medical facilities, don’t let them fool you, use a paper towel. We are not amateurs here, we are chronic sick professionals. Listen to know. Having a chronic pain disease is not fun but we do know the moves. Ask us anything. We are here for you. We know.
p.s. Still waiting for the sickness to hit me. This time I’m ready, I made chicken soup, all my son had was a cold.
Dear Invisible Illness Sufferers:
I’m conflicted. I want to say that we have lost a part of ourselves, a physical and emotional part, do you think it is a good idea to get together in real or computer time to say good-bye to the people we once were? Have we done it ourselves? Or do we just accept and let it go? There is the before Fibromyalgia or Diabetes or CFS, Virus, Autoimmune OR fill in the blank disease________ and after. Think about it, it would be an acknowledgment of our former selves, our loss and our lives now. We mourn people we loved; I am not the same person I was before my father died, I view my life “before he died” and “after.” Maybe we should have a ceremony together for the people we became after our loss, as simple as being silent for a minute at a designated time?
I guess this begs the question: do we ever really accept it 100 percent? We make do, we understand but it’s a way of life that we have lost, forever. I don’t believe that it will ever get better in my lifetime or that there will be a cure. That’s just my opinion. A wonderful approach is given in a book by Toni Bernhard called “How To Be Sick” which is a Buddhist inspired way of living with your illness. It will teach you things, no other book will teach you.
It has taken me years to truly accept Fibromyalgia, chronic pain and an autoimmune disease called Hashimoto’s Thyroiditis, my activities are now severely limited. Part of my energy used to be used defending myself to people who thought I was out of my mind or a pill popping junkie. Sigh. I can reassure you I am neither of those. Realistically, who would WANT to be like us? Does it sound glamorous to have no energy and to be in pain constantly? It’s not like we take magic pills to make us feel great, there are no pills that take away the pain. In fact, we don’t even remember what pain-free feels like. Of course there’s Fibro Fog but that’s a whole other blog post.
After the imaginary designated time where we mourn our former selves, we give our thanks, grateful for the life we DO have, for the cyber friends that are in the same situation that UNDERSTAND and for the body that still exists and for the many blessings we hold in our hearts.
Tell me what you think, I’d love to hear from you.
It’s Wednesday night at 9:30 pm. I’m so tired that it seems to takes an effort to breathe; I just want to curl up and go to bed. Every muscle and joint hurt. Every time I have to get in to the car or out, I moan and groan with pain. The same goes for sitting in a chair and getting up, or on the bed or couch, movement is key. Fatigue and joint and muscle pain are key players on our lives.
I’m so sorry you were diagnosed with Sjogrens Syndrome, another one of the auto-immune diseases. I have a couple of friends who have that too. I have Hashimoto’s Thyroiditis (an auto- immune disease of the thyroid) and Fibromyalgia, a chronic pain disease. Both of these illnesses together pretty much make life a lot more difficult. You will have good days and bad; some of us have it better than others. Sometimes you have to lie in bed when you have a flare- up and hide under your down comforter, other times you can push your way through it, especially when you have no choice. Many of us are mothers, wives, daughters and are not in the position to relax and sit around eating chocolate bon-bons (as much as we would like to.) My husband just had surgery on his Achilles Tendon, he will be on crutches for a very, very long time. It’s my turn to help him.
I truly am sorry you have an auto-immune disease however, honestly, I am THANKFUL for all the good you will do for so many people. I once wrote a blog post about how I wished a celebrity would have a chronic pain disease because then maybe we would get the credibility we deserve. Chronic Fatigue Syndrome, Fibromyalgia and other chronic pain and joint diseases often don’t get the respect we deserve. There are many uneducated and insensitive, poorly educated doctors (many of whom I have seen.) I hope you get proper treatment and follow-up with a Rheumatologist. Make sure you not only trust him/her because of their background and expertise but because you truly believe they want to help you get better. It’s key.
It’s a long road, a really long road. Take it one tiny tennis step at a time. Good luck to you. There’s a whole family of people with these diseases on-line, join us anytime.
I have made a lot of friends on some of the Fibromyalgia support groups on-line. I was diagnosed with Fibromyalgia about five years ago. Five years that have crawled at a snail’s pace, going backwards and forwards, up and down, down, down. I wanted to write this blog post for all my fellow Fibromyalgia sufferers and tell you that while there may not be a cure, I have improved.
I never thought I would be able to get out of my bed and get to the bathroom without all the serious, horrendous, stiff, and chronic pain I have had for many years. I never expected perfect, I don’t now, but I do know improvement and I have improved. I almost want to cross my fingers while typing this so I don’t “Jinx” myself, I’m sure all of you can relate to what I am talking about.
I will always have good days and bad days, that is a realization I have accepted. I have taken, in the past, probably about thirty different medications in different combinations and this is the fourth Rheumatologist I have seen (and will continue to see.) While your Doctor does NOT have to be your best friend, you should feel that he/she believes in you AND in Fibromyalgia as a chronic pain disease. That’s very important. The Rheumatologist I went to before this called Fibromyalgia a “lazy diagnosis” and attempted to treat my pain with dangerous immunosuppresant drugs that made me sick as a dog for months at a time. He did this because combined with Fibromyalgia, I also have an auto-immune disease called Hashimoto’s Thyroiditis. I didn’t know better so I followed his advice and took seriously harmful drugs at a dosage that should never have been prescribed. This old Doctor was a genius, but not in Fibromyalgia and not in being pleasant and understanding. As my present Doctor put it referring to my old doctor “it’s his way or the highway.” Don’t accept that.
I am now on a combination of drugs that not only treat my symptoms but also have treated my energy levels. I am NOT running any marathons, believe me and I have flare-ups that still can make me cry, but overall, at least on some days I am better. Please, do not give up hope, do whatever you have to do to find a good Rheumatologist and only a Rhematologist that believes in you and the disease. One where you feel that he/she really wants you to get better and that they truly do care. Don’t settle for less.
We all deserve better and I just wanted to say to all my on-line friends (Hi Graceful Agony Ladies, Chronic Babes, ohmyachesandpains, etc.) please don’t give up and thank you for always being there for me; I love you all. To friends that are new or newly diagnosed I NEVER thought I would feel any better and now I do. How long will it last? I have no idea. I have accepted my limitations, I accept that I will have bad days as well as good but I can say for sure, that compared to how I felt five years ago, I am better. My attitude is better too.
If anyone is interested in which drugs work for ME, I would be happy to tell you. Don’t give up, I almost did. If you are new to this and don’t know how you are feeling or if you are feeling mad and angry and sorry for yourself; go ahead, you deserve it. Been there, done that and try to stay in the present, not the past or the future. As my dad used to say to me “Be in Neutral.” It’s a life lesson from my dad that has stayed with me, try it, it might help you too.
When I first had my two bouts with Epiglottitis (OUCH) no one had ever heard of it. Even my ENT said and I quote: “how the hell did you get that?” If I could have spoken in spite of the pain I may have said ” How do I know? You’re the doctor.” But speaking, swallowing, breathing was pure torture and being in such intense pain makes you less than quick with a comeback. When I first posted “Calling Epiglottitis A Bitch Is A Vast Understatement” I wrote it for myself. Why did I have to get this pain? But, if it’s something unusual, it softly calls my name.
When I had Epiglottitis I told people it was the worst pain I had ever had, that childbirth was a cinch in comparison. When my two awful experiences had finally passed I asked every Dr. and medical person, if I could SOMEHOW prevent this from happening again. The answer was an unequivical “NO.” I scheduled an appointment with my internist just to discuss this and begged, pleaded and cried for the vaccine that is given to children. Another “NO.” She said it was for infants only. That seemed drastically unfair. After all, if those babies could have it why couldn’t iI have it? Give me 100 times the dose if you want, anything not to have to go through horrific, burning, stabbing, knife-in-the-back-of-the-throat pain again.
How does one get it? What is it? Apparently, it’s a virus. I know, when there is something doctors don’t know for sure they call it a virus but apparently this is one and a nasty one at that. It could be related to the Herpes Simplex virus, I was told, but maybe not…..It is frustrating and painful and so far this year (fingers crossed) I didn’t get it but I do live in constant fear of getting it again. No joke.
Did anyone get it this year? I hope you didn’t or if you did that it was a mild case (oh, who am I kidding there is no such thing as a mild case, it’s outright torture.) My ENT treated it with Prednisone, Valtrex and some special rinse, (and maybe something else, not sure) it helped…..after what seemed like an eternity. It will not go away on its own, beg for pain medication.
For those of you who wrote back to me with your comments, thanks. We helped each other. Never before had I heard of this bolt of lightning in the back-end of the throat, and hearing from you made me feel better, validated. Unbelievably, my blog post “Calling Epiglottis A Bitch Is A Mild Understatement” gets so many hits on my blog consistently. As you know, I blog about everything: food, Fibromyalgia, feelings, fun, Hashimoto’s Thyroiditis, Chronic Pain,TV, music, food, children, parents, grief, love and loathing. I blog when I am happy or sad, about funny things, family (they are not too happy when I write about them) my dog and dessert. But, this post about Epiglottitis constantly and consistently gets hits and I’m wondering why. Do more people have it now? Did it become an epidemic? I thought I was the only one in the world that had it, (clearing my throat) twice.
Here’s to you, my Epiglottitis Peeps, If anyone has any updates or insights, let me know. Or if you have had it recently, I am here to commiserate. I wish I could offer you a magic cure, I wish I could offer myself a magic cure but none exist. I’m here, though, to share your pain. Believe me, I understand it completely!
p.s. One important tip: if you have had this once, and feel a bad sore throat coming on, go directly to an ENT and not an Internist. My ENT gave me that advice, don’t wait around a week, like I did, waiting for it to get better. Get it scoped, diagnosed and treated before it gets any worse.
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.
Tick Tock, Tick Tock. Welcome to another edition of 9 and a half minutes. A place where I mention the things that annoy me. First up: SPAM. If you are going to send out this trash can’t you make the effort to spell “dear” CORRECTLY? It’s always misspelled and it’s in all lower case letters :”hello deaer.” This bugs me. Not to mention that I get hundreds of junk mail every day and yes, I do, have a SPAM filter. I am OCD about the amount the junk mail that I get so I need to check it and delete it frequently. It’s supposed to automatically delete in one month but that never happens. Every day I get the following suggestions: “buy drugs, enlargge your penis, veagra for womens, congradulations deaer, autimatic lottery winner”….just stop sending us this junk. Here’s my suggestion: ” go away, get losted, please, hun.”
Another thing that’s irritating is the call you get on a Sunday night from your favorite hairdresser, the one you found after years and years of searching. The one you trust implicitly. You finally find her and sure enough, one day you get “the call.” You know what it’s about, the minute you get the message “It’s Linda, from Tresses” on the phone. Deep in our hearts, women everywhere know that the only reason your hairdresser is calling you at home at night is because she has fled her old job, stolen your chart and is working somewhere else. My dilemna: I love the way she does my hair but she has joined a salon that I fervently despise. It’s not the end of the world and yes, a mere annoyance but these things add up.
It has been a horrific couple of years and many of us are suffering the consequences of a bad economy. The idea of a vacation used to give me something to dream about, to look forward to. Key word: USED TO, past tense. Even though it may not be financially feasible, it was something to dream and fantasize about. Thinking about flying someplace warm in the middle of winter or early spring used to make me so happy, an inside secret I tucked away in my heart. Now? Thinking about flying makes me anxious, another mood elevator crashes to the ground (no pun intended.) With the media screaming about terror alerts and bomb threats, who wants to fly now? Flying used to be fun, an exciting adventure. Now, you wait in very long lines, several times over, experience huge delays, body checks, shoe checks and most importantly, basic primal fear, anxiety and paranoia. I’d have to think it over for a long time before I would fly again and then, I would literally have to be sedated. Where’s the joy in that?
What is there to look forward to now? The economy stinks, the unemployment rate is ridiculously high and everyone seems to have less money or no money at all (with the exception of perhaps the super-rich which is even more annoying.) The world, as we know it now, is a scary place. I know things take time but even I am losing patience. The country needs some good news, some great news. We need something, anything to feel good about our lives; I don’t care what it is. Give us a glimmer of hope, a tidbit, a really solid fantasy.
It’s the first week in November and we had sleet, snow and a power outage for six hours the other day. At this point, I’d even welcome some global warming: as in the warming up the country variety. If you hadn’t guessed it before the other thing I despise with a passion is winter. I would love to sleep straight through to spring. It’s cold and dark, scary and we all get sick; especially for those of us with chronic illnesses and pain. I know life is not perfect, believe me, I know. I also know you’re not supposed to “sweat the small stuff.” But, when the BIG stuff is all bad, the little stuff just adds an additional amount of worry and annoyance; it makes us cranky. Very cranky. I’m not Andy Rooney, I’m just little ol’ me but I’m seriously pissed off. Join me next week for another edition.