Dear Body,

I know you have been trying to listen to me and I appreciate the effort but now, finally I think you have seen the light, pardon the pun. You have known what to do all along but with your being stubborn (and not letting your sister be right) you have negated every suggestion from everyone else. That’s not bad, you need to listen to yourself.

At the same time, I am proud of you, so very proud that you have decided NOW to,( on your own ), to do something entirely different. You went into a bad slump for a day and a half the “I can’t do this anymore” cry

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but you realized you really don’t have to give up. What a mood elevator that was!

Suddenly and slowly like each ray of a sunshine blooming like a petal you decided to do completely different. Instead of adding another med, you were going to stop them all. Yup, each and every one except for Synthroid which is medically warranted for your health. The others, well, you’re not stupid, you won’t go cold turkey, but you can talk (if you want) with each medical doctor and believe me there are way too many and discuss getting off the meds with ease. You are not asking IF you can do it but HOW. Hear that Doc? I am not asking your permission, this is my body and I’m taking it back.

You’ve had it in your germ-filled hands for exactly seven minutes each time. SEVEN MINUTES !!! I have (barely) seen you. My body, outside and inside deserves more than seven minutes. I need love, I need  respect and I deserve it. I know my body much better than you do. My instincts have never steered me wrong. Never. Can you say the same, that you have never given me the wrong diagnosis or the incorrect prescription. I thought not.

The other thing I will do and believe this is harder for me than the above is try to eat healthier foods and that means less processed foods. I can’t promise to throw my Kraft American Cheese Slices, individually wrapped, away, just yet, but I will only eat them when all other comfort foods are exhausted. I do make a mean chicken soup, all natural.

But, again, I’m not going to make myself feel bad if I go slowly in my process. And, I refuse to make quinoa on principle, kale too just because they are “popular.” I’ll wait six months to see what the new food trend is.

I’m not saying I wouldn’t order it for lunch at a cute local farm- to- land sweet restaurant my friend Sarah and I go to but I’m going to take just one step at a time.

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There you have it, my intentions, to be healthier, naturally and stop throwing back these ridiculous pills the doctors have given me because that’s what they do. Maybe I’ll send this to Michael Finkelstein at the Sunraven Center and we will go full circle. Meditation instead of medication. (Love that !) At least when Danny finds a job or if he has a sliding scale. It’s worth a shot. ANYTHING is worth a shot. Be Grateful, Be Kind even more than you have been. Heal Yourself. The time is now.

Love,

Soul

ps: Dedicated to my new friend, Ken

Just A Tiny Bit Of Cancer

Overview of the thyroid system (See Wikipedia:Thyroid). To discuss image, please see Talk:Human body diagrams (Photo credit: Wikipedia)

Demi, one of my oldest best friends has just been diagnosed with thyroid cancer. “The good kind of cancer” as she was told. “If you are going to get cancer, have thyroid because it is contained.” It’s not like breast cancer or bone cancer or ovarian cancer and it’s not pancreatic so be thankful for what you have. But, it’s one weird way of thinking even though I guess I can understand it. From what these doctors have said she has the “good” kind of cancer but she’s not feeling so happy.

She had waited a good two and a half weeks for the results from her thyroid biopsies. They weren’t unclear, they were short-staffed and it was around Christmas and New Year’s Eve. Try not to be sick around the Holidays, please.  I did research for her especially from my neighbor across the street, who had gone through the same, exact process six years ago.  She said and I quote:”If I can give any advice, I would tell her not to take the chance that I did and only have half the thyroid removed. If there is suspicion of cancer, let them take the whole thing out. You don’t really need your thyroid anyway.” I totally agreed, because if it was cancerous, why have two separate surgeries?

Coming from my family where three out of three of us are on Synthroid (brand name only which is like a Bible to us) I talked to my friend daily. She had slide after slide of her thyroid tested without surgery, all results came back “inconclusive.” What the hell is “inconclusive” anyway? Who likes “inconclusive?” You sure can’t celebrate but there’s no reason for weeping. Inconclusive is just that, to me, basically a shrug of the shoulders signifying “we have no idea,  could go either way “60 percent chance there is no cancer, 40 percent chance there is” quoted top specialists at both Memorial Sloan Kettering and St. Francis Hospital in New York according to my friend.

Finally, on New Year’s Eve she gets the call from her surgeon and it IS cancer. I stop breathing, I am in shock and so is she. I remember saying to her “Wait, what?” She tells me again. We are both in shock. So now she waits, until the puffiness around her scar from her first surgery goes down before she goes in again for the rest of her thyroid to be removed and a nodule to be removed as well. More surgery, more anesthesia, more pain. It was the first time that she and I, usually pessimistic, chose to be positive and optimistic and spiritual. The one time. As soon as I heard the news, I looked at my husband and said “see what happens when I am optimistic?” He replied dryly: “I was waiting for that….”

I knew my best friend, stubborn, beyond stubborn,would not heed my neighbor’s advice or mine. If it didn’t NEED to come out it was staying inside her body. I can understand that (well, I cannot) but I knew she felt this way. This dear woman will not even take an aspirin or any type of medicine unless she absolutely is forced too. Compared to her I am a junkie waiting for Methadone. Having Fibromyalgia I know pain, all too well and even with prescribed medicine it does nothing for the pain.

When she told me that she did, indeed, take the pain medicine in the hospital and stayed overnight I was in surprised but happy she was open-minded. Now, post surgery, her surgeon is getting annoyed at her repetitive questioning. You know that tone: “AS I SAID BEFORE…” not good. But, good for my friend that she keeps asking until she gets her answers. Way to go, girlfriend.

She has another three weeks to go until the next thyroid surgery. This time, I’m wearing black, I’m feeling negative, doomed and totally pessimistic. Bad news all around. We both are. We deserve it. That’s what best friends are for.

My Bad And My Apology

Mea culpa, mea culpa (Photo credit: VanessaO)

Yesterday I posted a blog (“Worried Sick-One Crazy Ass Blog Post”) that not only scared me but many of my followers and one in particular, a friend I haven’t met named Mike C. First, THANK YOU for caring.  I figured out exactly what happened and I was a complete jerk. I am on the medicine Synthroid for an underactive thyroid, (and an autoimmune disease called Hashimoto’s Thyroiditis for which I take Synthroid. We were away for a few days at our daughter’s orientation to college and in the hotel I had no idea if I had taken my Synthroid in the middle of the night as I usually do at home. In the morning, when I woke up the pill was still there. I vaguely remember taking it in the middle of the night but…I wasn’t a hundred percent sure so I played doctor. Mea Culpa.

Stupid me, as it turns out TOOK IT…AGAIN, double the normal dose. I was off kilter all day and had no idea why. Yes, I was super-duper anxious and fearful but couldn’t imagine why everything felt so wrong and intense. I apologize to all of you who were concerned and I apologize for making you concerned. I only realized at the end of the night that was what happened and yes, I felt like the stupidest person on earth.

This dear, as yet unknown, Mike was worried about me. My friend Judith and Wendy and others were worried about me as well and I’m so sorry. I am not denying that I don’t get anxious at times, I do but yesterday was like an anxiety bonanza. I could have been the poster child for Buspar or Xanax or perhaps a new drug called “Scared-out-of-my-nutty-head.”. Also, while I feared (in my panic mode of all future imagined illnesses) I never said I felt the symptoms. It was an endocrine mind game that truly put me off my game and frankly I should have been given a “Do Not Stop Go” to the Emergency Room.

Thanks to Mike C. he reminded me of how I USED to be funny and I used to enjoy writing Pop Cop and being sarcastic and witty and sentimental and all the other things I used to write about. It’s been a very rough year, that I can’t deny. I’m trying to look forward to not let the major (and they were major) stressors of last year stay with me. I hope to get back to writing on a variety of topics too. And yes, hopefully I’ll be funny too.

Thank you readers, for caring. We just got home from our seven hour trip but I refused to rest until I sent this out to you. You don’t know how much your comments meant to me. I am fine, I do have meds and I do see a doctor so please don’t worry. Just give me a virtual kick in the pants and tell me, like you did yesterday. I love you all.

Again, I dearly apologize for causing anyone any stress, but I can’t tell you how touched I am that you cared enough to write me back.  Hugs, kisses, pizza with jelly (sorry, Mo),  orange carrot cake and honey baked corn bread with a glass of cold milk for us all. Cheers, to friendship!

Love, Laurie aka hibernationnow

Hope For Fibromyalgia-Medication (Follow-Up)

Image via Wikipedia

For those of you who asked what drug regimen I am on I am happy to answer. However, I AM NOT A DOCTOR just a Fibro patient who has been going through this for over five years. You should have a Doctor, a Rheumatologist for Fibromyalgia. I also have Hashimoto’s Thyroiditis and sometimes doctors just look at thyroid levels. My thyroid levels were fine but I was still having the intense pain, so I went for different opinions. Don’t just go to an Endocrinologist if your Thyroid levels are fine and you are still experiencing ongoing pain, lethargy etc. Sometimes diseases can be linked together.

At the moment I am on Savella (drug for FIBROMYALGIA) and Nuvigil (was once used for late-night workers for narcolepsy). I also use Alleve at times (2) twice a day if needed but I mostly use that because I have foot problems, however, it may help Fibro problems also, too soon to tell. I also take Synthroid for my thyroid.

One of my friends asked which drugs I have tried. The list is so long it’s on my husband’s computer but I will post this now so you won’t have to wait for the other meds.  A partial list included:

Cymbalta, Plaquannel, Methotrexate, Arava, and Tramadol.

Good luck, let me know what is working for you and what is not.

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.

Swallowing Razor Blades

I was hospitalized a little more than a week ago for having Epiglottitis, otherwise known as my throat is KILLING me, it’s as if I had been swallowing razor blades, one after another. It truly was the worst pain I have ever had, birthing quintuplets naturally would have been less painful. Since I was released I have been on numerous medications to help (help-NOT) with my symptoms, especially the ulcers on my epiglottis, near my vocal chords.

I missed a scheduled trip to Washington D.C. with my family because the thought of moving, anywhere, was out of the question. I was sleeping a lot, aching all over and generally very miserable. I did go on the trip to Boston with my family where I stated that “I will be going there even if it’s on a stretcher.” Luckily it didn’t get to that but I was feeling terrible still and kept having to put my head down for fear of passing out. I couldn’t do any of the walking since I was so tired and out of breath; I was also coughing continuously. Bought over the counter products, DayQuil, NyQuil, In-BetweenQuil, Robittusin cough syrup and enough throat lozenges to feed an entire country for a week. Nothing helped.

Today, after all the doctors who took last week off for Spring Break returned, I had to, once again, go in to see them. We started with an ENT who scoped (that is such an unpleasant procedure) a camera through my nose to look at my throat. Progress, that seemed like it had healed.  Why was I coughing incessantly? He didn’t know and referred me to my Internist. Basically, she had blood work done, a chest X-ray and an EKG. She then told me to see a Pulmonologist later in the afternoon. After a brief nap, we trudged along to another office to see the Pulmonologist who gave me an assortment of (more) medication and a follow up visit tomorrow for extensive breathing tests. He also alluded to a CAT scan in the future if the cough doesn’t go away in two weeks. Not something to look forward to. He fears that the all too powerful methotrexate given to me for my auto-immune disease (Hashimoto’s Thyroiditis) may possibly have damaged my lungs. Just great.

Wednesday, I have to go in to see the previously-known-as-the-guru-Dr.-in-the-city. I’m sure he will try to make me take methotrexate again.  Or perhaps he will put me on Prednisone (again). These rating scales of pain are basically useless. At least all the people I know who have chronic pain and fatigue think that they are. When I was in the hospital with my throat pain, they asked me my pain scale from one to ten, ten being the worst pain ever. I gave them eleven as my answer. Enough said.

I’ve been on Prednisone, Plaquannel, Synthroid and a slew of other medications. I hate being on all these different medications especially when I still feel like crap, worse than crap. It’s time now for the new nasal spray, cough syrup and anti-acids prescribed today. My poor body, my poor soul. We are both spiraling downwards quickly in the haze of pain and emotional spirit.

Someone please catch me before I fall.

Daffodils, Pink Polish and Methotrexate

March 8, 2010 was the first day that I did not wear my heavy, dirty, dark brown Northface jacket in many, many months. After the horrendous winter we had( 21 inches of snow for just one of the many storms) I was happy to shove my jacket deep into the closet and not look at it again until next winter. I know there is no guarantee that we will not have another snow storm or frozen temperatures but I refuse to bring out that jacket again even if I wear 7 layers of clothing instead. That ugly old jacket represents winter (actually the last 4 winters) , and feeling cold, tired and old, armed with mittens and scarves and boots and being afraid (really, being very afraid) of the slick ice and the black ice and the ice- ice. The forecast said it would be in the mid- 50’s and sunny and I had every intention of taking advantage of the reprieve. It smelled and tasted like the very first hint of Spring. You could see the pre-blush on the trees, the buds not yet out but inching forward, little by little.

It definitely was a day for doing errands outside, smiling; no mittens, no coats, no hats; no need. It was a- happy-to-be-alive-day, that first recognition that spring really, truly, may indeed happen sometime soon. It was the day to go to the nail salon for a special treat and have them put pink polish on my pretty seashell toe nails. The person next to me was having BLACK polish put on her nails, both hands and feet.  Maybe next year at the start of winter, I will do that in PROTEST  but certainly not at the END of winter.   It was fun to sit with other moms and talk, chatting about colleges for our teenagers, harmless gossip in the neighborhood, new restaurant reviews. It was a day to breathe and laugh and enjoy this special day, that came, unexpectedly, like the purple, yellow, blue crocuses that force themselves out from the solid, rock-hard ground.

Even though the weather was perfect, my medical condition was not.  I had quite a bit of  trouble getting in and out of the car;  my body hurt, but my soul was smiling.  When there is a perfect baby- blue sky, 56 degrees and a sunny day, all your aches and pains feel just a tiny bit better. They don’t hurt less, they just feel less awful. It’s a state of mind. The medicine that I have to take every day for the rest of my life, (Synthroid, Methotrexate, Plaquannel etc.) will not change, but these rare effervescent days brighten my mood.

It was not  a day for hearty home-made thick pea soup with smoked ham but rather, a piece of French bread, some Gouda cheese, and glistening, seedless black grapes.  It was wearing a soft, gray, cotton T-shirt to bed, the windows open, pillows plumped, drifting off to sleep, clutching my  pink fuzzy blanket in one curled hand, still smiling.

Dedicated to Dr. GS: Thank you making me feel better and helping me to smile again.