lucky (for Jolene, the Bloggers and Invisible Pain Carnival)

I think I am lucky. I do. Now everyone will be mad at me and I will be thrown out of this precious group of supporters. I’m sorry and I know this is not what you are looking for in this blog carnival but I have to be true to my self. I am lucky. First of all, I don’t think my symptoms are all that bad compared to many of the other bloggers; I feel like I don’t deserve this group. Yes, I have pain but it doesn’t sound half as bad as my fellow members. I feel like a fraud, and a lurker and ashamed.  Second, a close friend of mine is dying of cancer, around the corner from me and she has weeks, maybe months to live. She is a wonderful person, someone with a sunny disposition, a great mother, good friend, an absolutely lovely family. Her name is Dawn and she is at least ten years younger than I am so she is in her early forties. When she was able to walk she would ask me how I WAS doing. How I WAS feeling and when you asked her, she always said “fine.”

She is not fine anymore. She had breast cancer and then brain cancer and now I don’t even know where the cancer is because it might be all over her. There are no more treatments for her, no more cures, no more hope. I am alive and she is dying. She has three children, 19, 16 and 13, all three amazing kids. They don’t deserve this in life and neither does she.

I drop by with food, I make a special chilled peach soup for Dawn because that is the only thing she can eat, a tablespoon or two of soup, if her family is lucky. I haven’t seen her in weeks but I know she got bad news on Sunday from Memorial Sloan Kettering Cancer Hospital in NY and no-one has seen her since. I don’t know how long she has to live but I feel it isn’t going to be very long. Her parents were in from Wisconsin for a long time and when her mom saw me and our mutual friend, her mom started crying and she and her husband, Dawn’s parents, continued to walk, slowly around the block holding on to one another.

I have Fibromyalgia and an Auto-immune disease called Hashimoto’s Thyroiditis. It was partially diagnosed 4 years ago. I felt like” I had the flu but without the fever.”  That is the only way I could describe what I was feeling and how badly it hurt.  I couldn’t get out of bed, I couldn’t do anything but sleep and moan, my whole body aching all the time. I felt like it had been flattened by an enormous truck,and the truck kept going but I did not.

I felt sorry for myself and my mother, and sister and husband and kids and friends felt sorry for me. I get tired easily, I live in the “fibro fog” people talk about, I can’t keep up with everyone else; I don’t try to either.  Still, with aching limbs, and joints and bones I am alive. Yes, I hurt but I don’t think I hurt as badly as some of you and I don’t hurt as much as Dawn’s children who are at home, by her side as she breathes, as long as she breathes. I may not have the perfect life, my husband hasn’t worked in a year and we have no income coming in. I have a Junior and Senior in High School but I can’t complain, I won’t complain because I don’t deserve to.

I am here today with clenched shoulders and tired, swollen feet, aching, tender and swollen, red joints but I am here. Even though there are a lot of things I could complain about I can’t. I won’t, because I’m lucky.

Prednisone Bitch, Part 2 (ENERGY!!!)

The Energizer Bunny

Image by Ben+Sam via Flickr

I just made 5  huge portions of baked ziti and covered them all with shiny aluminum foil. I put two small portions in the freezer, for my daughter (she’s a vegetarian) I made a big one for all of us to eat tomorrow night and made 2 to give to a friend.  I also made chilled peach soup with spices  for my friend and bought her a still-warm Italian bread from the bakery as well as a bag of brownies. I delivered the food, found room in our crowded refrigerator for ours and practically buried my head in the freezer to make room for the rest.  I have folded three loads of laundry, have one load in the washing machine that I will soon transfer to the dryer. I loaded the dishwasher and ran it, and then washed various pots and pans by hand, rapidly. This is so not me, this is me on steroids; I could be a walking, no sprinting, advertisement about drugs: this is my body on steroids, this is my body without; what a difference!  I am spritzing  Fantastik on paper towels to wipe up spills, I am cleaning up the house. My movements make me dart back and forth and I am talking at a really fast pace. I actually think my husband prefers me like this, the “energizer bunny” onspeed and not my usual low-key self. He better not get used to it because in a few days it’s all over and I will be back to my old chronic pain and fatigued self. Unfortunately.

I know it will be depressing when I come 0ff of this steroid high but it’s amazing how good I feel. Rush, rush, rush. My fingers can’t  type as fast as my thoughts are running, streaking through my head. My son, looks at me both amusement and  concern: “Mom, calm down” he advises, but I explain to him that I cannot. I will however, be back to my usual sub-par pace in a mere few days. As for now, I feel chipper; a little too chipper. Remind me later, friends, when this wears off, what it felt like to read this, to feel this, to embrace this because every day I will feel less and less energized, more and more lethargic. I am the movie “Cocoon” for those of us old enough to remember. I am “Cocoon” the re-make, 2010.

Luckily, the bitchiness of the first day is over and I am no longer throwing darts, figuratively, at someone’s head. I am not sending off vapid e-mails and insulting comments, that was bad-me, ” Prednisone Bitch-Me.”  Thankfully, she  has left, departed, disappeared, leaving behind sparks and energy.  It was as if wild-me had been let out of hiding after many years or I had broken out of prison. The energy is here, the meanness is gone, it was a good trade.

Perhaps I will go to bed late tonight ( can you see me tiring out quickly?) and do a few more chores, instead of what I usually do: read in bed, watch a little Food Network television ( or Bravo or Travel) and play on my computer. Luckily, I have already DVR’d a few shows, which I have never done before but accomplished that this morning after my first cup of really strong, aromatic, Bustello coffee. Now I know that I can watch these shows at my leisure, when leisure finds its way back to me, say in about 4 days or so. Right now, I can’t at all describe myself as leisurely.

The first night I was on Prednisone I was roaming the house, inside, up and down my 13  carpeted steps because I could not fall asleep, I was up until after 2am, now I know why. Last night, with my allergies so bad I had to take a Benadryl, I nodded off at about 12:30am. My usual bedtime sans Prednisone is about 10:30 and that’s on a really good night.

My mind races, my legs, that usually, carry the weight of the world, walking slowly  and painfully in sneakers has all but disappeared. I am practically frolicking. It’s like a vacation from chronic pain, fatigue, fog, and lethargy. I am very alert though when someone is speaking to me I don’t listen as carefully because my mind is already formulating the next sentence.

I’ve typed this whole page in less than a few minutes but don’t give me credit. In a few days I probably look back and say how artificial the feeling was, how the energy was just too much. Will I do that? Probably not. I will remember how I felt with great fondness and longing. This is not what normal people feel either, this is steroids, pure and simple, artificial and dangerous and today, it feels good. I’m not going to lie.

Prednisone, Bitchiness And Me aka The Prednisone Bitch

edvard munch - the scream  1893

Image by oddsock via Flickr

I’ve been on Prednisone before, twice, and both times made me feel groovy, great. I was high on life, my muscles didn’t ache and I was a joy to live with…Not this time. There seems to be an evil lurker inside of my body making me say things without my usual filter and ultra-edit.  I don’t think I am making up the things that I am saying, I just think that Prednisone is making me babble. Like some people on alcohol, their defenses are down, their mouths are open and wide and sputtering. Prednisone to me, is like alcohol and it’s not being easily tolerated by me or frankly,  by my husband.

The worst thing about it? I really don’t care. I feel like a fight and am already on the way to one without stopping at GO.  I’m a loose cannon, feel a little speedy and don’t feel the love tonight. Not from the Prednisone and not from my husband who was/is the unwilling recipient of my sudden quick-fire burst of anger. I don’t think he is in the least bit amused.

I am a lioness growling, a bear attacking, a leopard changing and colorizing it’s spots.   I have never felt this way before but I believe I know what the side effects to Prednisone are….well, at least one of them. I’ll probably gain ten pounds just from eating salad and dry chicken and then I will really be hooting and hollering. Back off, man up, stay away, give me a wide berth. NO, I did not say GIRTH.

I am trying to breathe a little normalcy into my body but the nice person inside me, way deep down inside me, is not having anything to do with it.  It’s laughing at me, taunting me, making me grimace and snarl. This is only my first day of Prednisone, I have 8 more days to go. This could get ugly, oh wait; it already is.

The Tin Man Known As Me

The Wizard of Oz - March 17, 2008 - Act I_180

Image by Brian Negin via Flickr

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.

Who Am I?

Who am I?

Image by stevec77 via Flickr

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.

A Warm Welcome For New Chronic Pain Members

Strelitzia reginae, also known as Bird of Para...

Image via Wikipedia

Dear New Chronic Pain Member,

I won’t say “Congratulations” for being in this particular club, a club that we all wish we were not in. Life works in very strange ways. There are some things we can’t possibly understand and there are some things we just have to accept; chronic pain/illness falls into that category. Whatever you have gone through there’s a pretty good chance we’ve  all been there and back. At least, you have found the most supportive bunch of people I’ve ever known. Even though what we have in common isn’t exactly our love for food (well, that too) it’s nice to surround yourselves with people who truly understand. Trust me, it helps.

Yesterday I dragged my aching bones and stiff joints up the four stairs for a consultation with a different Rheumatologist/Fibromyalgia doctor, even four steps felt like a lot and the rail  on the wall  called my name; I let it. Unlike my old doctor this new human being seemed attentive and concerned, he didn’t smirk once, didn’t put me down at all. He even talked to me (and not to my husband which used to happen all of the time.) Most of all, this guy  seemed to care. He interrupted my exam to talk to a suffering patient and while I don’t think that’s good form, listening to his soothing voice and gentility made it alright with me. It made me feel that I could call him for questions or concerns, not just send him e-mails like the old dude.

For a patient with a chronic illness or multiple chronic illnesses, a good rapport with a doctor is imperative. Go to a doctor that will give you the gift of hope. I’ve been around the block a few times here, actually 4 years worth so please listen so if I can shield you from the mistakes I have made, please let me.

This is my story, while going through menopause at age 50, my body basically fell apart. I developed an underactive thyroid, aches and pains, high cholesterol and a kangaroo stomach pouch, as I’ve said before “without a joey.” After many mistrials with many doctors, four years later I am here.  My old rhuematologist used to growl and say “Fibromyalgia is a lazy diagnosis.” What was that supposed to mean? Did that mean I didn’t have it because I certainly felt like I did. Those of us who have chronic pain know it; we feel it, eat it, and breathe it. We live with it day by day, aching night by night. There is no question in our minds but a big question mark still for some doctors, the wrong doctors. If your Doctor does not nod his/her head appreciatively or with empathy, do me a favor, walk out.

Fibromyalgia get’s a bad reputation and while it cannot be cured hopefully it can be helped. I had at least 14 out of the 17 pressure points and I was still on a lot of medication. I like that this Dr. took me off things that he thought I didn’t need. NOTE to fellow sufferers: If you have Fibromyalgia or any chronic pain illness and high cholesterol like me, ask your Doctor about side effects from certain drugs. Four years into this I just learned (from my mother)  Zocor or generic Simvastatin causes muscle aches and fatigue. Ask your own physician or call my mom if you want.

I also have an auto-immune illness of my thyroid, called Hashimoto’s Thyroiditis. What this means is basically my thyroid cells attack each other and this illness too brings pain and fatigue as well. Also, something called connective tissue disorder as well as others:  TMJ, IBS, Interstial Cystitis, bouts of anxiety etc.

I have no illusions that I will be “cured.” There is NO cure for my illnesses.  I am thankful I have friends who understand how I feel. Fellow sufferers who know what it means when I have a flare up  when the humidity is high and I am like a limp, achey, dishrag, basically hung out to dry. I’ve found that people without the disease don’t know how to handle “us.”  “Get more exercise” says my mother. “Go to a nutritionist”says my sister.  They mean well, they just don’t get it and how could they? We live in a different world.

The image of myself that I used to have was of a helpless kitty, crying and lost. Now, it is a beautiful, graceful flower,  purple and orange and called a Bird of Paradise. It looks like a bird‘s open beak, colorful, strong with its head, firmly, bravely, looking up. I pray it lasts.

Soggy Cereal, Wilted Lettuce, Elizabeth Hasselback and Me

I am too tired to think, speak, eat. Too weary to walk, talk, move. My body is aching and sore from being in the car yesterday for more than 4 hours total. In the car, out of the car, each movement is painful, uncomfortable and is such an unbelievable effort. It was visiting day at camp and we were NOT going to miss out on seeing our kids, who are  really not kids anymore, they are 16 and almost 18. They will, to us, always be our kids, our grown-up babies.

The Imuran medication which I take for the aches and pains of an auto-immune disease, Hashimoto’s Thyroiditis, an Inflammatory Disease, Fibromyalgia and possibly Arthritis, has not done a darn thing; at least not yet even though I have been on it for six weeks. I know, I know, I will give it 2 more weeks, just in case.  I’m tired of being a patient, even more so, a patient, patient. I want to stop all the wretched stiffness now; my body is wearing me down and my mood is plummeting. I don’t even think a good dinner would cheer me up and that speaks volumes,  for anyone who knows me. Food is Life, Life is Food. Too tired to even eat? Something is very, very, wrong.

I am part of a club that I don’t want to belong to.  Here I am amongst the champion women of chronic pain, chronic tiredness, chronic everything survivors club. These other women/friends have such better attitudes than me. Tonight my attitude is pure, personal, chronic misery. I feel dreadfully, chronically old. I am 53, I still feel 5 in my mind and over 85 in my body. I think young, I act young and child-like (ok, childish too sometimes) but I move like a very ill old person whose limbs  and joints hurt. Everything hurts me. I know it’s not the end of the world and there are far worse things, but I’ve been going through this for the last three and a half years. It gets better with one medicine and then I have to stop the medicine because of evil side effects. This is medicine number 3 and I don’t see myself going for a 4th. I’m so done.

I am even (gulp) considering a gluten -free diet when I return from vacation (a free cruise, I can’t start now!!)  and when school starts. I’m thinking it over and as much as a foodie as I am my health is more important than the taste of food. I hope. Did I just say that? Seriously?  I wish. I truly believe that because being on a gluten-free diet AND not feeling well will definitely put me over the edge. That, as Oprah says,” I know for sure.” I know there are gluten-free cookbooks out there but honestly, I will not spend my money on Elizabeth Hasselback’s cookbook, no offense. I will probably buy the “other” gluten-free cook book just because I find Elizabeth annoying. I am not saying she is a bad person but she is definitely annoying (not to mention way too conservative).  And so I sit, and wait and creak. Any comments or suggestions from you, my friends, about gluten-free diets would be greatly appreciated especially if you can talk me into being enthusiastic about it!

The Headache That Slammed My World

I sit in my bedroom, lights dimmed, having just swallowed two Bufferin. I have an aching head and while once the cicadas outside brought me a lively colorful concert, they now are taunting me with their continuous and annoying chirping. I have read many of the blogs on chronic pain, I have also written about chronic pain but I feel I am not worthy of that group, not really. Their pain is so much worse than mine, I think. I have an auto-immune disease (Hashimoto’s Thyroiditis) and some say Fibromyalgia too. I have inflamed joints that are stiff and betray me, my right hand seems to be curled all the time, even in sleep. It is painful to unfurl them, one at a time, like the hand of a grotesque witch, and me.

I am slower and stiffer than I used to be. Getting in and out of cars, (beds, chairs, everything) fills me with pain and stiffness; I feel old and weary. I can live with that, many of my friends on-line suffer so much more.  What I AM missing is energy. Everything in my body hurts, or my infamous line to describe to doctors and friends “it’s like having the flu without the fever.”

I see a rheumatologist and am now on my third medication for my auto-immune disease. The first one worked well but ended up giving me a non-stop cough and I was hospitalized for epiglottitis; (think raw throat pain times a million) steak knife through open wounds, the worst pain I have ever had.  The second medicine, worked great for my energy but the side effects were so bad, (intestinal in nature) that I could not leave my house for 8 weeks.

Now, I am on the third (and last) medicine, I don’t want to try another one. This is the last chance before I just let my body become chemical free and deal with what I have been dealt with. I don’t have the money for holistic remedies, massage, etc. I barely have enough money to cover doctor appointments at fifty dollars a pop. The rheumatologist doesn’t accept any insurance so I have no choice but to pay him the big, HUGE bucks; I don’t go often. I was all set to go to a holistic place that would try to treat my condition(s) naturally until I found out that the cost was seven thousand dollars. Again, seven thousand dollars and this did not include follow-up visits or medicine.

My eyes are lowered, the sound of the cicada’s have lessened.   The pounding in my head is less severe, but now there are dogs barking loudly across the stream. I thought the cicadas were bad, they were an opera compared to these angry, fighting, nasty dogs. Time passes, I play low soothing music, I drink water and I don’t know if the medicine helped or if the darkness provides a cover, a safety net for all. Hopefully soon, I will sleep.

On Being A Patient, Again

I never stopped being a patient, not since my thyroid went out of wack 3 years ago, not since I was told I had Fibromyalgia (and then told it was a “lazy diagnosis”)  Not since the prednisone, the hospitalization for eppiglottitis the 24/7 cough that would not go away, not since I was sent to the Pulmonologist, the ENT  the addition of 5-7 different medications. Not since my stint in the packed emergency room with an overnight stay in the hospital with the worst pain I have ever had in my life.

Here I am again, world! Stuck and pissed off with yet another chapter to my ever-so-boring and relentless saga of pain, chronic pain, auto-immune diseases, Hashimoto’s Thyroiditis, lack of energy and tonight,  a really bad, horrible, disgusted and angry, almost-in-tears mood.

The latest is that my Synthroid level ( TSH) is very, very low, too low said the doctors.  To those in the Club of Thyroid Disorders out there, (COTD- I made it up but it works) I know you will understand. The T4 is perfect. One doctor, the evil endocrinologist (lower case on purpose) sent a prescription (albeit the wrong prescription) in the mail telling me (no, writing me) he was surprised with my numbers but I should reduce the Synthroid medication (buzz word) to 50 mcg. First I was at 88, then 75, now 50???   That’s like telling someone who has the flu, to get up out of bed and do somersaults while standing on their heads, backwards.  I’m down enough people, now this? It makes no sense.

I wrote to my Guru Dr. in the City who handles the type of Autoimmune Disease (Hashimoto’s Thyroiditis) as in***THYROID DISEASE  to tell him. He suggested that my” Endocrinologist” do a simple TRF blood test and he guessed I might have something called Secondary Hypothyroidism ( I know, I could so be on Gray’s Anatomy with the amount I’ve had to learn and remember.)

Here’s the problem. The nasty, dull, mean-spirited endocrinologist (lower case on purpose again) who I am going to DUMP as soon as I find a new one, refuses to talk to me on the phone. Just for a couple of questions. “No, come in”,  he said. “I just want to ask him a question” I pleaded to his nurses “No, come in.”  I’m seething. First of all I have never heard of a doctor that won’t take a phone call for a question (I wasn’t demanding to speak to him at that moment) and that absolutely refuses to return a phone call from a patient. Second, he knows about my Guru Doctor in the city since I have copied him on everything. (Do you think this could be a terrritorial thing?)  Third, he did not believe that I had, indeed, a note from my Guru Dr. to suggesting he test me for TRF (whatever it is). No. What? You heard me. No. No phone call, no question, no way, no how. “It is too difficult to explain on the phone” the nurse parroted. Are you kidding me? I had one question about the blood (yes, in the lab in the office) test and a simple thought: wouldn’t it make sense to test the TRF level FIRST (as my Guru Doctor said) then to start on a regimen of a new medicine that could take 4-6 weeks to kick in? Isn’t that throwing the donkey in front of the carrots? (or whatever that stupid expression is.) Not to mention, I do not want to go back to a doctor that treats me with such disrespect (and he always has). I know he doesn’t know that the fifty dollar co-payment would be hard for our unemployed selves. I understand that, but, a 30 second phone call?

Well, you know what the answer is I’m sure. “No”. So here I am, calling new Endocrinologists (one is on vacation until the 20th, the other does not return phone calls) waiting to make an appointment. Oh dear Lordy, Lordy, it’s July and the doctors (at least the ones I’m trying to reach) are on vacation, and of course you cannot leave a message.

I have that creepy, queasy, angst-ridden feeling in my stomach. What now, I ask? I can’t reach any doctor AND short of sending an “I BEG of you” message to my Guru Doctor (which I will do anyway in the early a.m.) I will be sitting home in a flurry of frustration and anxiety. I will be sitting on my bed, fed up, confused and furious and yes, a little scared too. A little courtesy, perhaps DOCTORS?? Yeah, right.

I feel totally helpless and demeaned. I feel anxious and confused and ignored. Does anyone understand this?  Is this the time for an out and out binge on sugar- laden treats?  Can I run and hide from my anxiety for a few minutes with cookies and chocolate,  and that sweet powerful surge in energy? This doctor says Yes. Absolutely. Starting Now.

Fibromyalgia? Auto-Immune Disease? Chronic Pain?

Oh me, Oh my. All of the above and then some. Diagnoses dished out like those colorful candy buttons on a long roll of white paper. Whatever Dr. I see gives me another diagnosis. I’ve taken Cymbalta when the Dr. thought I had Fibromyalgia from the tender points she pushed on my body. Now, that technique is not valid for diagnosing the illness anymore.  After that I went to an auto- immune specialist for the Hashimoto’s Thyroiditis and the new inflammatory disease he discovered.”You are a very sick woman” he droned.  I’ve been on Methotrexate, I’ve had Epiglottis, twice (severe throat pain is an understatement), and I fervently pray I never, ever get it again. I’ve been on Prednisone half a dozen times, Vitamin D, Synthroid, Plaquannel, Trazadone and more….

I was put on Cellcept (“the medicine that has the least amount of side effects”) to replace the Methotrexate (that landed me in the hospital) and after a month I couldn’t stand the extreme intestinal side effects (“only 8 percent of the people get it “). Lucky me!! I wrote to my Dr. and he said “give it another month” because I don’t think he believed how bad the side effects from this drug really were. I begged for some sort of stomach aid but he refused. “Give it another month,” he intoned flatly. End of discussion.

I’ve been off Cellcept for a week and a half and I am still suffering from the same severe intestinal side effects I ‘ve been having for two months. I wrote the good Dr. and told him I was coming in (as in squeeze me in) because the side effects were so overwhelming I couldn’t leave my house. “Oh, it must have been the Cellcept” he said.  (ya think?) My bad. He took me off the offending drug and promised that in 2-3 days I would be much better and all the symptoms would disappear. It’s been 6 days and counting…..

He did prescribe medicine to mask the symptoms and  when I take the meds they work, but alas, when they wear off, it’s really bad news. I can’t live like this. He threw around words like endoscopy, I added silently colonoscopy, what else? I see a trip to my Gastroenterologist in my very near future.

It’s been three years now since I started on this bumpy ride of chronic illness and I’m not much closer to a cure (I know there is NO cure), resolution.  I swing from wanting to get off all medication and trying to find the right one (the third’s the charm, right?).  I’m waiting a few more days and then I will, once again,  attempt to repair my own physically fragile life, to ask more questions and demand answers. Nicely.

Any suggestions? Any genius Doctors?  If I was incredibly wealthy I would head to the Mayo clinic but I don’t have that kind of money. Any rich donors? (just kidding).  I will also go to the natural pharmacist and discuss with him what might help instead of all these toxic medications I’ve been on. I know though, that genius Guru Dr. has another medication in mind for me so that’s in store for me soon, but not quite yet.

I’m done, pity hour (or 15 minutes) are over. I’m not going to think about it until next week, when I CAN TRY and do something about it. Have to go now. Guess where.