I have self- prescribed a new medication that treats many of my annoying illnesses, my arthritic hands, my painful legs and general muscle and joint pain. You can find this medication at some drug stores and every grocery store. You don’t need a triplicate, you don’t need a physician’s signature and no one will think you are crazy if you fill this prescription; they will not look at you crossly if you double the amount. You don’t need to plead with your Doctor or Specialist and you don’t have to see their withering looks when they deny you the medication.
My new drug of choice, are ginger snaps. At first, I bought them on a whim. Then, seeing the improvement in my mood, I bought them again and I think they help more than the other six or seven medications that I am on for Fibromyaligia, or Hashitmoto’s Thyroiditis. Nothing else seems to work so I may as well get enjoyment out of this prescription.
I don’t have to eat ginger snaps on a full stomach or two hours before eating: there are no instructions. I eat them when I want. More importantly, I don’t resent this drug for not working as much as I do all the others. They are not covered under my insurance plan but that is alright, they are reasonably priced and always available. They are my treat after long days trying to adjust to a new, busier schedule. My husband is working full-time now while I am still feeling my same old, tired, achy self. I have tried the generic brand instead of the name brand and I am completely satisfied with either choice.
The first bite, those of you with (TMJ) might think about putting the cookies in the microwave, for a while before digesting. Nuke to taste. Or, just suck on them for longer joy and satisfaction. You can also dunk them in a lovely cup of Earl Grey tea, milk or coffee. There is no real overdose danger except your pants might feel a bit snug if you eat the entire box in one night but that side effect has never been reported (and who would report it??)
It stands to reason that this particular drug, unlike Oreos, Milanos, Twinkies, or Chocolate Teddy Grahams, is a guilt-free treat. My point is, I feel like they are entirely medicinal. My stomach feels soothed, my mouth has something to crunch on that is not boring old celery and I get many different taste sensations in one bite. The first bite fills you with a very hard crunch, be wary of any loose teeth you may have. The “ginger-esque” burn comes at the end: during and after your last swallow. The only problem I see with this medicinal treat is that they are highly addictive so make sure you have a box or two extra, hiding in your pantry or medicine cabinet.
I pretend/know they are healthy and I don’t even look at the calories, fat grams or carbohydrates. Here is my theory: if they are not sweet, they are definitely good for you. If anyone else has down the same medical research on this drug or any other, I’d love to hear about it.
I look back at the wistful essays I wrote in the past about this disease combination that I have. What strikes me now is the hope and innocence that I had back then. I thought if I could be on just the RIGHT medication, my life would go back to “normal.” I know now that normal is just a word and a dream. I’ve had these illnesses for over four years, with three different doctors and probably over 15 drugs in some combination or other.
I don’t know when I finally accepted emotionally that none of these drugs would make me feel so much better but it wasn’t that long ago. I’ve accepted that I have the limitations that I do: the muscle aches and pains, joint pain, constant leg pain (I don’t know WHAT that is from), the occasional bout with Irritable Bowel Syndrome, the fatigue, forgetfulness, weird sleep patterns and just about every other symptom that I could have at any given time. I’ve come to a point where even if I am not sure it is Fibro-related, I just assume it is.
Sometimes I need to clutch the banister going up and down the stairs, sometimes I don’t. There is NO pattern; it depends on the day, the hour, sometimes mere minutes. How can we be expected to remember all these changes that happen at any given time? I can’t remember what I had for dinner last night. I go into a room to find something and forget what I am looking for.
Somewhere along the line, I gave up and gave in to this mystery disease. There were times when I even questioned if I had the disease, although I know I do now. The stiffness in my back, and in my shoulders should have convinced me but I used to blame the brown overstuffed pillow. The feeling of helplessness is legendary yet the one good feeling is the support from other Fibromyalgia sufferers.
I am now on Savella, Plaquannel, and Tramadol but I am sure that it will change soon. Am I better than before? It’s hard to judge since this illness is so inconsistent. From one Rheumatologist appointment to the next things may feel different but on the pain scale, that I am beginning to despise, there’s never a lower number. I don’t want the “big guns” of medication again, I have been there, done that, and landed in the hospital overnight. With permanent Fibro-Fog I can’t remember how I felt eight weeks ago; it all gets jumbled up in my mind.. Better? No. Worse? Not really. Pain? Absolutely. Stamina? None. Forgetfulness? Always. Our short-term memory has been stolen from us.
It’s not that I have given up (maybe it is) but I’ve accepted that this illness is not going anywhere anytime soon and most probably there will never be a cure. The feminist in me thinks that if this was happening predominantly to men, there would be more research, more sympathy and certainly, more recognition and credibility.
I go on college tours with my daughter and son and I sit through the information sessions but when they go on the tour, I find a chair and sit alone for ninety minutes. I could barely get to the information session because we had to walk five blocks but going on the tour is absolutely impossible. Only people with Fibromyalgia know how this feels. Any other physical handicap gives you sympathy and an unspoken pass but this chronic disease is invisible. I feel bad, guilty, and think I am a disappointment to my children and my husband. This is real life and as much as I know I can’t help it, there is still part of me that is crying inside, alone.
I have been feeling extremely discouraged and blue; I’m back to square one, for the sixth time, in my search for a successful treatment for both my Fibromyalgia and auto-immune disease, Hashimoto’s Thyroiditis. It’s been over 4 years since my initial diagnoses and I have been given drug, after drug, after drug. I start a new medicine, each time, with hope and innocence and excitement like a flirtation with a possible new love. Two months go by and then I find out that it was, again, just a fantasy. Side effects are my enemy, I generally am the person that fits in the “possible and infrequent side effects.” Another dream deflected, another dream deferred. Back to the drawing board, again; I eliminate the medicine and so too my hope.
I’m drowning my sorrow in leftover Halloween candy and cookies: Almond Joy bars, Kit Kat bars, Nestle Crunch, Heath bars, Reese’s peanut butter cups, Twix bars, Keebler chips deluxe cookies and pretty rainbow cookies filled with marzipan and jam. For my anxiety attacks that wake me up at 3:00 am and keep me up until 6:00 I occasionally take Xanax, one prescription drug that I trust.
Yesterday, I started Savella for my Fibromyalgia and decided to stop using Arava (an immuno-suppressant drug). True, Arava kept my energy up but my legs ached continuously, like someone was squeezing them into a vice and wouldn’t let go. I don’t want to be on as many drugs anymore. I want to simplify my life, my body. It’s always a long stretch between taking the new medication ( 6-8 weeks) to kick in and likewise for the drug to leave my body. My husband kept mentioning how the Arava gave me energy and he was right but at what cost? It was only the other day that it occurred to me that I don’t have to live with the side effect of leg pain if I don’t want to. I’ve been on this drug for months and the thought just occurred to me. I have a choice but with that comes the acknowledgment of failure. Am I so used to pain that I feel it’s acceptable, even normal, to have some?
I’m alone in my search because no one really knows how I feel except me and even I get confused, my symptoms blur together. It’s hard for me to describe pain that is not throbbing, jabbing; how does one explain “constant?” I go by hunches and I try to listen to my inner self. My body is telling me now to get rid of the different chemicals and if I have to, start again, reevaluate in the future. For now, I will try to nurse my defeat with sleep, and when awake, look bravely at the sun in the sky while it lasts. I dread winter; I always dread winter. My bones feel frosty and taut, my body aches with pain and my mood becomes as dark as the early sunset.
*These Days by Jackson Browne
Well I’ve been out walking
I don’t do that much talking these days, these days
These days I seem to think a lot
About the things that I forgot to do
And all the times I had the chance to
And I had a lover
It’s so hard to risk another of these days, these days
Now if I seem to be afraid
To live the life that I have made in song
Well it’s just that I’ve been losing for so long
Well I’ll keep on moving, moving on
Things are bound to be improving these days, one of these days
These days I sit on corner stones
And count the time in quarter tones to ten, my friend
Don’t confront me with my failures, I had not forgotten them
My Fibromyalgia was diagnosed four years ago along with an autoimmune (Hashimoto’s Thyroiditis) disease and a connective tissue disorder. They both were gifts I got after menopause. Thanks. I’d rather burst into tears a hundred times and change night shirts six times a night than have this. I’m sure I’ve had Fibromyalgia for a long time, I just didn’t know what it was.
I never had the same amount of energy that other people had and I always needed ten hours of sleep. I can’t function on less than eight but ten is ideal. Let’s not forget the nap too. I used to nap every day for three hours, every single day and I would head to bed at 9:3o pm each night. Every bone in my body hurt, I thought I had the flu, without the temperature but it never went away. New pain pops up like the springs of an old mattress and I just sit there in utter disbelief.’ No,’ I would say to myself,’ it can’t be. Isn’t there enough pain and discomfort?’ Sigh. Apparently not.
This pain I have makes me feel like a hundred years old; my 83-year-old mother is in so much better shape than I am. She does yoga once a week, she swims every day, she is out of her apartment all day, going to the city, socializing with friends. She literally runs around without stopping to rest or sit down or G-d forbid, nap. In the beginning, before she understood, (does she really understand now?) she used to tell me that I needed more exercise which is a common thing for people with Fibromyalgia to be told, over and over again. Read My Lips, NO CAN DO. I can barely make it around the block twice with my friends. They continue for a third loop and I beg off, mostly I’m fine with it, a few times I have had a twinge of embarrassment even though there is no reason for me to feel that way.
You get unsolicited advice from many people, people who don’t have a chronic pain illness. Go holistic, just get massages, change your diet. They might as well say dye your hair, or drink raw eggs or spin like a top and throw up as a cleanse. We KNOW the choices that are out there, really, we do. But generally we look to other pain sufferers for the answers not you. We know you mean well but frankly, it doesn’t help us. Often, we don’t know WHAT to do and we are the ones that are suffering. I’m there now. I’m not only caught up in the cotton-headed Fibromyalgia Fog (where am I, what did I come up here for?) that is my life but I feel unsure and anxious about my options. I don’t know what to do or who to turn to or who to trust. My energy is better from the medication I am currently on but now I have new pain in my legs. Great, I can stay up all day having more energy but with more pain. Do I have more pain from the side effects of the medication or from Fibromyalgia or wait, it could be from my auto-immune disease or connective tissue disorder. Listen up, world, I can’t speak for other people, but I am often unsure and clueless, trying to live in this world, day by day. I’m the first one to admit that I have no clue if what I am doing is right. How can we know that? We go to top doctors and hope for the best, sometimes it just isn’t enough. Do we settle? Do we stretch? Do we give up on medications? Is six weeks enough time to know that a medicine is working? Who knows? We don’t have the answers either, believe me it’s our fervent wish to understand and solve these medical mysteries.
I have stopped scheduling things in advance because I don’t know how I will feel that day at that time. My good friends understand, they will say “let’s talk the morning of” and I really appreciate it. My friend Sarah will just say “let’s see how you feel” and her concern (and no advice) is for my health and I know she just wants me to feel good and be happy; I also know she worries about me. I appreciate everyone’s concern, truly, I just sometimes don’t know what to say. I wish I was healthier too and in less pain, I wish I didn’t have new symptoms from time to time but I do. Please understand that I like it a whole lot less than you. I know you feel bad for me but be careful of your words, saying “just when I thought you had every symptom in the book, you get another one,” is really not helpful. I know what I am going through you don’t need to tell me. Just be there for me, listen, offer me gentle hugs and a shoulder to cry on, be supportive. Take it from me, that’s plenty and more than enough.
I am in a world by myself of chronic pain, fibromyalgia and thyroid disease, yet I coexist with many friends. Friends that have similar ailments, some have the same, others that defy diagnoses but the symptoms define them. I have learned we are more than the sum of our symptoms but I have not yet learned exactly how to deal with it emotionally.
There don’t seem to be medications that I can take (or haven’t been told about) by the myriad of doctors that I go to help relieve my pain. First stop, the Rheumatologist for my autoimmune thyroid disease known as Hashimoto’s Thyroiditis and for Fibromyalgia. After that, to the Endocrinologist for thyroid levels. My Internist, the Pulmonologist, the Opthamologist to check for narrow-angled glaucoma. I have seen more “ologists” than a healthy eighty-five year old person and I am not complaining for a second; these are the facts.
If people ask me how I feel, I am at a loss to describe the symptoms. The latest comparison I can make is The Tin Man from the Wizard of Oz, without the oil can. I am stiff, I hurt, I move at a slow pace. It is very hard for me to get in a car and get out, these are not smooth actions, often I am holding on and heaving myself up; sometimes once is not enough. I have balance issues too. I keep trying new medications but haven’t taken one yet that truly works. These are immunosuppressant drugs that are supposed to help relieve the muscle pain and aches I feel all the time, the operative words are “supposed to.” They also take eight long weeks before they kick in…..I wait a lot.
Tomorrow, to “get me back on track” before starting the newest of medications that I don’t even have yet, I am supposed to take Prednisone, 3 days of 30 mg, 3 days of 20 mg, 3 days of 10 mg. I have been on Prednisone before and I have mixed feelings about it. While I had no bad side effects before, there is always that risk. The emotional risk, to me, is even harder. I felt SO GOOD on Prednisone when I needed it last year that when I started lowering the dosage, I actually broke down and cried. In a previous blog I referred to it as if I was in the old movie “Cocoon” where older people feel young again from a miracle and then suddenly a short time later they are themselves again, old, aching, and hurting badly.
Tonight I feel anxious, tired, discouraged and down. I think once I am able to sleep, I will sleep deeply. It is always a game: whether to nap or work through it. Today, I was determined to stay awake. I am deeply worried about a friend who is very, very sick with cancer. I was too upset to nap so I decided to push through the pain and get busy. I got myself out of the bedroom and went to the kitchen to bake home-made banana bread for my family. Mushy bananas, a little vanilla, some chocolate chips, some raisins and the basics, to occupy my mind, my hands, and most importantly, my heart.
Am I more than the sum of my symptoms or less? It started with menopause, the entire disintegration of my body. All of a sudden my thyroid became underactive and I thought I had achieved a state of false bliss. Just add Synthroid and I will be able to eat AND lose weight at the same time” Well, as it turned out, not exactly. The image of every foodie fat girl eating AND shedding pounds like my hairy mutt sheds her fur was not accurate, I was disappointed. I was in pain all the time, my favorite phrase: “I feel like I have the flu but without the fever.” I ended up not just having an underactive thyroid but I had Hashimoto’s Thyroiditis, an auto immune disease of the thyroid, basically my own cells were attacking me. My internist nodded her head and said “there’s really nothing more I can do” and as I lay there sobbing, undressed in the exam room, she clicked on her brown high-heeled shoes turned swiftly and marched out of the room.
One doctor led to another and another all with differing points of view. The second Rheumatologist diagnosed me with Fibromyalgia but still, my aches and pains continued.
The third hot-shot doctor specialized in RA and Auto-Immune Diseases. “Fibromyalgia” he said, “that’s nothing but a lazy diagnosis.” We treat the auto-immune disease, straight and simple. Of course, not that simple. He started me on Methotrexate which helped but landed me in the hospital for my second bout of Eppiglottitis and possible lung damage. I develped a 24/7 cough, asthma and breathing difficulties, the pain from the Epiglottitis was excruciating. Several prescriptions and an inhaler later I came home.
They stopped the Methotrexate and he put me on Cellcept which worked well, with the exception of intense intestinal distress that forced me to stay in the house (and close to the bathroom for 8 entire weeks). I complained after four weeks and hot-shot ignored me and said “stay on it another four weeks” and like a fool I listened.
If I was rich I would go to the Mayo Clinic but having had no income in a year, that rules that out. One day at a time? How about one moment at a time? Today I stayed in bed, napping and trying to calm my internal self. Part of me wants to kick and scream and fight, the other part is too tired and weak to even imagine it. Along with the aforementioned symptoms I also have narrow-angled glaucoma which is very serious, interstitial cystitis, TMJ and a connective tissue disorder as well as a balance issue. Who have I become? When did all all these symptoms become me?
My latest blood tests come back next week and with it, I hope, will be some helpful information. I am tired of being tired, sick of being sick. I feel horrible when I fall and my two sweet children and darling husband come racing up the stairs to see what happened….again.
Help me, fix me, try me, define me.
I was thrilled to be going with my family and in-laws on a 5 day cruise to Bermuda, courtesy of my very generous in-laws. It brought back all sorts of memories that I hadn’t thought about for many, many years. I remember that 12 years ago my parents treated my sister’s family and my family for a cruise to Bermuda. It was a family vacation complete with my parents, my sister’s family and us, and most importantly “the cousins.” Four little fresh faces, all shiny with excitement, a boy and a girl for both my sister and I: 5, 7, 8, and 10 who love and adore each other. After that trip, they would always be connected and they still are very much so today.
I have a photo that I cherish of my sister and I that shows our happy faces and wind-swept hair. Our brown hair blends together and although we look completely different, this photo just smiled “sisters” and love.
I remember 12 years ago we were all on deck as the boat pulled away from the dock. There was yelling and whistling and waving, and total excitement; sometimes I wish life could have stopped at that joyous moment but we go on anyway as time wills us, forces us to do.
Twelve years later, my husband’s parents (who felt sorry for us) treated the four of us and them to a 5 day treasure of a vacation, again to Bermuda. What a difference time makes and it passes so quickly you barely have a moment to stop and think. This time, when we pulled away from the dock, I went outside to look and cheer, and I couldn’t. I didn’t even think of this as a factor when I went outside but as soon as the boat started moving, I felt sad. It was so emotionally charged for me that it was surprising to me and so unsettling. I couldn’t speak, couldn’t even cry, I just felt numb yet able to feel this horrible and powerful feeling of complete sadness. I went inside as fast as I could, not walking, not skipping but running as fast as my aching body let me. The skyline looked empty with the devastation of the twin towers. How could I enjoy the view when the twin towers were not there? They were in the background of our first trip; there was nothing now.
It also reminded me in a painful way that my dad was not with us; he passed away 9 years ago but the pain felt fresh and raw and stabbed me at different moments, like it did years ago. Time does not change that type of pain, it hides, it tries to fool you, but once someone dies that is special to you, life as you have known it, is gone forever.
It’s been a long year, of unemployment for my husband and the pain of Fibromyalgia and Hashimoto’s Thyroiditis for me. Add narrow angled glaucoma, TMJ, chronic pain, and a connected tissue disorder and other unresolved medical problems and that has been my life for the last, long, 4 years.
Back home now, we are enmeshed in back to school errands. Our son is a Senior in HS this year, our daughter is a Junior in HS. Next year there will be another change, that will be wonderful and heartbreaking and empowering and positive. Our son will leave for college, our daughter a year after. I am cherishing every moment that we spend together but I know that there will not be enough time for me. This vacation created new memories for the four of us, ordering room service, having dinner together every night, laughing. These are the memories I will cling to, in my heart, forever. Time goes by and I with it, looking forward, looking back, trying to ride the waves as they rise and fall, rise and fall.
I just read a friend’s blog and while I have never met her in person, I worry about her. There is a definite bond for those of us who have some kind of chronic disease or illness. We feel for each other, and we really do care. I see myself sometimes in her writing, stressed out, anxious and at times depressed. I have been there, done that.
Luckily now (even though I still have the same illnesses) I have taken the time to listen to my inner self (when it works). Sometimes it’s better than listening to many other people. Who knows you better than you? Also, apparently the medical world is trying (and succeeding) in making women go crazy. Let’s blame them. In light of this, take the newest controversy which has been a staple in womens lives for years: (and encouraged by all doctors) calcium supplements.” You MUST take them”, my gynecologist says. “Definitely says my internist,” you HAVE to, it’s for good bone strength and preventing osteoporosis.” Oh, okay, absolutely. Now, just recently “we did a little research and the calcium supplements are now related to an increase in heart disease for women.” Huh? I don’t understand how on earth we are supposed to know what to do, what to take. No one is making it easy for us, especially doctors. Ask a number of doctors one question, take your pick of the answers they give you. Why does this always seem to happen to women and not men? How come they don’t get conflicting and controversial views half as much as we do?
It’s all personal choice. Remember the saying “everything in moderation?” (if not, my dad used to say it all the time). I think that’s mostly true. Denying yourself certain things, certain foods will make you (okay, definitely me) crave them more. So, if you want dessert, order dessert. You don’t have to eat the whole thing. Ask the waiter or waitress to give you half and put the rest in a container to take it home if you want. As my friend Bruce always said “no ask, no get.” It’s really as simple as that and a motto I live by. (Thanks, Brucie)
We all have our individual preferences and rituals. For example: I make a mean banana bread (if I do so say so myself). I know that if I add raisins to the banana bread I could probably, with enough time, eat the whole thing. However, if I put raisins and chocolate chips in (the family favorite) I don’t eat much at all. Why? I don’t really like the addition of chocolate when I love anything raisin-like. It’s all a matter of trying to think things through first and that, I admit, is harder than it sounds and it is an ongoing problem.
Let’s all try to worry less, walk a little more, take in a few minutes of sunshine and try to live life day by day. Not only “one step at a time” but one crawling, aching, stiff joints and baby step at a time. We’re all in this together.
Before you enter a patient’s exam room, where they have probably been waiting at least twenty minutes, stop, pause, and check your ego at the door. This should be standard procedure; but unfortunately it isn’t. There should be a confirmation box needing a signature for “Check Ego?, next to the automatic Purell dispenser, to assure quality control. *While the title is catchy I do know I cannot accuse all doctors of doing this but the ones I DO know (and you know who you are) are definitely in need of lessons in humility, humanity and sensitivity training. The bad part about it? Certain doctors just do not care. Full disclosure.
Two days ago I had an experience with my pompous, grandiose, full of himself, doctor who shall remain nameless. Many of you have heard about this person before. He is an excellent doctor, scratch that, he is an excellent DIAGNOSTICIAN. He charges exorbitant prices and he does NOT take insurance (insurance, what is that? what is it for? Me take insurance? Ha Ha! ) but he is very smart, I’ll give him that. Is that really enough? Do we have to pick expertise in lieu of great beside manner, can’t there be a combination? That said, he is so out of touch with the “real world” that it is insulting, aggravating and utterly demeaning. Unfortunately for me the deck is stacked; I need him, he does not need me; and he knows it.
I had been to a local doctor (one who takes insurance) and the doctor I saw asked me to have Ego- Dr. fax her some information. A reasonable request, I thought. I thought wrong. When I e-mailed him, he flipped out and as an old friend used to say ” had a serious nutty.” I’m talking a crazy outburst in print. I’m serious, he was FURIOUS. “He should fax her?? ABSOLUTELY NOT. “If she wants to call him he would try to talk to her but he will not answer specific questions.” The questions she asked, were so innocuous, I have no idea why he made such a fuss. Perhaps he realized that he was dabbling too extensively in my case, acting as Head Dr. of Everything. He also mentioned that “if I chose to see a doctor in MY INSURANCE PLAN, so be it. His implication was clear, without saying it, he made it known that he felt “You get what you pay for.”
Unfortunately, I need to see this doctor a few times a year for my auto-immune disease/thyroid illness. I am considering looking for a second opinion and more importantly, some sensitivity. This man is well-known in his field, however, he is not well-known for his “bedside manner.” When these magazines come out with their rankings of” BEST DOCTORS” who is filling them out? Other doctors? Which leads me to think that it might be a little biased. Maybe they should ask patients and ex-patients their opinion to get a clearer view. A great idea: ex-patients, that would be ideal “why did you leave the practice of Dr. So and So?. Please explain. Now that is a survey I would read with relish.
Apparently the phrase “First do no harm” was meant merely in a physical way. Some doctors should think about their actions and take responsibility for them. A person is not just a symptom, we are multi-faceted people who deserve YOUR respect as well. A doctor who treated the whole person? That to me, would certainly deserve the title of BEST.