singing the icy cold blues

Icy blue

Icy blue (Photo credit: GustavoG)

i’m either coming down with the mamas blues or the cold/ flu blues because something just doesn’t feel right. oh lord these bitter cold temperatures are really hurting me, hurting my chronic pain bones and muscles. we went outside for five minutes, i started coughing and couldn’t stop. now my eyes are welling up but you know me, that could be for already missing my son who is leaving tomorrow to go back to school. the anticipation of him coming home after birthright was so intense and seeing his smiling cheerful face at the airport and after looking at his photographs and the way he spoke, he grew up a lot. he could understand how i felt too.  i just need a little alone time for transitions, 24 hours at most for this. he’s leaving home again but i think it’s mostly because he was overseas and i was so eager for him to be back in the u.s. and the excitement of it all. sharing my old memories with him.

dan and i both like when the kids are at school and we have time to ourselves and i don’t have to make 3 different meals that gets old so fast. but tonight, i just want to cry because everything moves so quickly, that what i had been waiting for, was over like a snap of my red, frozen fingers in the icy air that stung like a bunch of angry wasps or bees.

our daughter has been back to her college for a week already and she couldn’t wait to go back to school to be with her friends. i didn’t blame her, she was bored out of  her mind here and we were getting a little annoyed too. sitting in her bedroom watching tv and eating was doing us all in. if her brother hadn’t gone away for 10 days he would have been bored to pieces also. two very different personalities, he always needed to be entertained, always, “mama, play with me” endlessly while she (more like me in that sense) could play by herself with her toys and dolls and stuffed animals for quite a long time, happily.

two children, well, young adults, our son is 20 and our daughter is 18, they will always be our children to us, but they are not children any longer. i used to have a lot of their baby pictures around, special ones, but last year i put them away because it hurt too much to see them. when they loved and needed me best. i needed to realign my life away from the past and guide it to the future.

i try to keep my life, our lives in the present but once in a while, like tonight, one can get a short stabbing pain or two, getting older, watching our amazing children having fun. i think sometimes we are envious. once in a while i focus on the sadder things to come in the future but i work hard to “not meet trouble halfway.”  i know now i will readjust my focus, for 15 minutes and do something soothing, i will feel better physically tomorrow. i will listen to music to energize or soothe me. maybe i will write without punctuation, without editing and capitals, i always loved e.e.cummings., the poet, when i was young. i can turn my head back now and laugh. everything is going to be alright. we are all responsible for ourselves. please don’t forget that, me, and every single being.it’s so important. may your life be a good one, may you help it to be even better.

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Cough, Sneeze, Cough 1-13-2013

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:

sick

sick (Photo credit: Jaysun) I guess it was a very different flu this year, sorry, my bad. People are lined up 3 x3 to an emergency room to get seen by a doctor. Fevers of 104 degrees are being reported in ADULTS. I’m no doctor, but that is not good. I worry about my elderly loved ones. I worry, period. Got something against that? I suggest you don’t bring it up. Because any minute now my mood could snap from quietly feeling sorry for myself to wide eyed bitch on attack. We all have those days, now don’t we?

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.

Banana Milkshakes

'Cavendish' bananas are the main commercial cu...

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I feel really poorly again today and I don’t know why. Every step hurts, every joint aches, every muscle is stiff, and I’m not hungry, which is definitely unusual. The windows had been open with fresh air coming in but I missed the comfort of the cool air conditioner and a cozy blanket and the room swaying like a slow-motion ballet. My head is pounding and I feel weak, it’s hard to move, hard to think, I feel like throwing up but can’t.

I tried Alleve for my body aches and headache but it didn’t help. I always question and try to diagnose my ailments and when I come up with no new answers, I sigh and breathe deeply and think “Fibromyalgia Flare?” Or maybe it’s the flu or too many allergens, a virus or just a few bad days. At this point I don’t care what it is or what it is called, I just know I am back in bed, with my dog near me and my mood, weary. I’m tired of being tired and achy and I want to slip into my sneakers and go places, see people. Instead, I am alone with my book but I haven’t read one single page.

I tried so hard to heal myself and I made a banana milkshake, with very ripe bananas, milk and ice and sipped it slowly to try to soothe my spirits, to hydrate myself with bright and shiny, nutritious food. It didn’t help and I am disappointed; I thought for sure that the banana milkshake cure would help me. I tried to listen to music and sing but I just couldn’t stand to listen to the music, so I stayed silent, listening only to the beating downpour of rain attacking my windows. I can’t even think of leaving my bed to help out with driving and that makes me feel both guilty and drained; my head pounds harder, my whole body feels hot and it burns like a slow-cooker, constant with a warm temperature.

Last night I felt worse than today and I tried to cure my evening with chocolate. There’s a lot to be said about half a big pack of M & M’s at the end of a very long day. I chose each pretty color to pop into my mouth and crunch. I know it is not right to treat illness and malaise with food  but once in a while, the cheerful colors of M & M’s soothe me, the endorphins kick in and I go to sleep.

Perhaps tomorrow I will feel chipper and I will wake up happy, my head and eyes clear and more energy in my body. Maybe my legs will swing over my bed and I will greet the day with enthusiasm. But if not, maybe it will happen the next day or the one after that. If I still feel the same way I will eat the rest of the pack of M & M’s, make another banana milkshake and begrudgingly call the doctor. I will have to go in to see her and she will most probably tell me “it’s viral, go back to bed and drink plenty of liquids” as if I didn’t know that already.

REPOST: FOR INVISIBLE ILLNESS WEEK:Thyroid Disease And Fibromyalgia With A Touch Of Menopause

Don't give up

Image by quinn.anya via Flickr

I am NOT a Doctor. I may see a lot of Doctors but in no way am I one. I don’t pretend to be one. However, I am a patient, a chronic pain patient and I believe I know a whole lot more, personally, about these subjects than some Doctors do. Sorry, but it is true. This is only what I THINK, only what I FEEL and only what I have EXPERIENCED. For those who have read earlier posts about my dealings with Fibromyalgia, Hashimoto’s Thyroiditis and Menopause, this is different; I’ve never once put my own theories down on (computer) paper. Also, for the young woman who responded to a post saying she will check out Fibromyalgia even though her Doctor said “He didn’t believe in it”  YOU GO GIRL!

I hope this will take the five or more years of suffering that I had to go through and help someone; HELPING just one person would make me extremely happy. I mean that from my heart. I think there is a correlation with the above- mentioned diseases/changes, at least for me there was, especially with Thyroid Disease and Fibromyalgia.

I went through Menopause about five years ago, it wasn’t too bad, I had the usual symptoms but it wasn’t anything I couldn’t bare. I think that Menopause was the catalyst to all these (bad) changes in my body. After being in menopause, I went to my annual physical where my Internist did the usual blood work. When the results came back, for the first time in my life, I had an underactive thyroid. (Thyroid disease DOES run in my family, both my mother and sister have it.) I was put on Synthroid (my opinion ONLY: I use brand name, NOT the generic.)  My symptoms were chronic pain, muscle pain, severe aches and pain, and extreme fatigue.  My own quote: ” I felt like I had the flu without the fever.” That is what I felt like day in and day out. I thought the Synthroid  (for my underactive thyroid) would help but it never did. For months I was in bed feeling worse and worse, my said Internist said “there is nothing further I can do for you” and walked out of the room leaving me inside, on the examining table, sobbing. True story.

She finally referred me to a Rheumatologist who looked at me and said I had “Scoliosis” and that with my thyroid disease (an auto-immune disease: Hashimoto’s Thyroiditis) I should be prepared to get OTHER auto-immune diseases. Gee, thanks. There was no mention of Fibromyalgia and since when did I have Scoliosis? Whatever.

I felt horrible, chronic pain, muscle pain, joint pain, I could barely get out of bed. I won’t even mention the doctor ( he gets lower case on purpose!) that I went to who treated me with very DANGEROUS drugs, I will spare you that. I have Fibromyalgia and I really do think, there may be a connection between Thyroid disease and Fibromyalgia. AGAIN, I am not a doctor. However, I recently read about a new study where they are trying to see if T3 levels are linked to Fibromyalgia. (Promising!?)

Please, if you are experiencing all the symptoms I mentioned, don’t let an ignorant doctor make you feel like a fool. You know YOUR body best. Keep fighting, keep researching and, go to a good Rheumatologist, this is the Doctor that you need for Fibromyalgia. I have a friend who has a Thyroid condition like me (Hashimoto’s Thyroiditis) and a severe case of Fibromyalgia and she only goes to an Endocrinologist. Big Mistake but she will not listen to me. Don’t be like her. I just want to help. If you do see a Doctor that scoffs at Fibromyalgia and doesn’t believe in it: leave, do not stay. Check out your Doctor on-line, I chose mine from a list that said he believed in Fibromyalgia, treated it and patients loved him. I am one of his biggest fans. You deserve this too. Good luck.

People Called Me Lazy

free 'sweet' hugs

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.

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.

Pain, Feels Like Old Times

This morning, I tried to get out of bed, tried being the operative word. I felt like I did when my Fibromyalgia was in full bloom. Not that it is in any way anecdotal to flowers, delicacy or beauty. I feel like old times. The hard part is that I don’t know if this is a flare-up, even though I am still taking my medications. The only one I haven’t been taking recently is the Estrogel, a gel that you put on your arms used for Hormone Replacement Therapy. Could that be a cause for what I am feeling?

When you hurt all over, and struggle to get up the stairs,  when you don’t know where the pain and aches are coming from you feel even more at a loss.  I went away for a few days over the holidays, we took a plane, could it be a bug that I caught from the plane? It’s so hard to diagnose yourself when you have a multitude of factors. I feel like I have the flu again, without the temperature. Exactly the same as when I had Fibromyalgia which my autoimmunologist says is “a lazy diagnosis. ” He is treating my auti-immune disease (Hashimoto’s Thyroiditis) with immuno-suppresant drugs, which, of course, have side effects too.

I am sitting or rather lying in my bed afraid to move a muscle. Every muscle and bone in my body is in pain right now and I haven’t felt this way in a long time. It gives me time to appreciate how well I was doing compared to this but I am now questioning what got me here? Sometimes, those of us with chronic pain, unfortunately, blame ourselves. That is where I stand right now. Motionless, covered by piles of blankets and feeling upset, both physically and psychologically. I blame myself for stopping the HRT when I did not hear back from my Dr.  I blame the weather, it’s nasty cold snap feels like it’s physical abuse, striking me all over my body. It could be something, It could be nothing; the reality is, I honestly don’t know.

Do I start reapplying the HRT gel when this could be a virus? I forgot how bad I felt before, and I am not happy to have a reminder.  Do I continue the HRT when inherently I am not comfortable taking bio -identical hormones? I don’t know what I have or what to do. I don’t want to take more and more medicine but frankly today I am a complete mess. When I took Advil I felt better, apparently it has worn off. I feel scared and vulnerable all over again, I want to hide under my pink fuzzy blankets. I want to lie still, as still as the night, to try and assess what I’m feeling and why. The truth of the matter is I may never know, and I feel incredibly helpless and alone.