Cranky Is As Cranky Does…I’m HUNGRY

Chicken soup is a common classic comfort food that might be found across cultures. (Photo credit: Wikipedia)

HELP WANTED: LOOKING FOR A SCONE ASAP OR EASY RECIPE

Yes, it’s true. I AM CRANKY and I don’t even need to explain it. I know. That’s enough. I don’t want pity and I can’t change the situations. My physical health, sigh, I have to accept. I’ll live. However, when my life’s joy, (vice,) hobby and life’s work is limited then it gets darned serious. No, I am not on a diet. That would be easy. I wish I was on a diet because there would be a reason and an outcome and a desired result.

But, with my bad luck, I have to be the one whose jaw blows out whose sound carried through the house leaving me shrieking in unbearable pain and crying that my husband came running. I knew I should have gone to the ER.

I saw my dentist, an oral surgeon and now I’m supposed to see a TMJ specialist. I’m not surprised, it was just another thing to heap on but for me, this was a personal tragedy. Not being able to EAT?  I don’t like drinking or smoking or anything else, I have no hobbies but one thing I love is food and now that has been taken away from me. I’m yearning for real food that is not mashed, white, banana-like or blended.

A fresh batch of homemade buttermilk scones. (Photo credit: Wikipedia)

And even if I tried to like drinking I have recently been informed that my kidneys are in bad shape too. Surprise!

I’m sick of chicken soup, vanilla milkshakes, rice and bananas. I long for warm, crunchy French bread dripping with butter, a large sandwich, basically anything I am now denied. I still want scones, pizza and a great big salad and did I mention scones?

I can’t bear to call another doctor tonight. I’m in no mood. It’s almost time for dinner, home-made chicken soup with mashed up Saltines in them, I learned that from my kids. Luckily, we have cupcakes from yesterday, they better taste good. I need something before I start to scream.

The oral surgeon also said that this pain will come back that some internal bleeding happened when the disk in my jaw slipped. He’s a nice guy, a really nice guy, he didn’t even charge for the five-minute consult but I wish he hadn’t said what he did.

I’m hungry, I want to eat real food, Last night I rebelled and tried (the operative word) to eat teeny, tiny bites of pizza with fork and knife (a la Diblasio ) which really was no fun at all and of course the pizza WAS BURNED.

Out of pure desperation I ate my husband’s filet of sole drenched in egg and butter:  I don’t even like fish but it was something different.

BUT, I want scones, surely I could eat those, sweet scones made with love and wild blueberries, I see them dancing beneath my eyes.

I wish I could bake with ease. With all my illnesses I just may have to acquire a new skill: baking. No more liquid diet. ‘Eat as if you were a three-year old” the charming doctor said. I will listen to him, cutting everything up into tiny pieces, everything for a taste of variety.

I’m stuck on muffins and stones. Any kind. Soon. Help me. Please?

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• Delicious Scones (thethirdcoastyankee.wordpress.com)

I am sick, I am not sick, I am

Pain #TP637 (Photo credit: ConnectIrmeli)

I am not sick. I am. I am sick if I feel pain, pain hurts. Sick is pain, not bumping up against walls and tremors. So, I am not sick. Not now. Not yet. You did hear me, right? I am not sick. What happens when invisible illness become visible? When a pink cane accompanies me everywhere? I am not invisible anymore. People see me and give it a thought, “oh, there’s something wrong with HER, I wonder what it is.”

I think the same thing, flatly, without terror, at least today. What IS wrong with me. I have shut down for the most part and if I could stay in bed in my white-flowered pajamas, thin and comfortable, I would do that all day and night. I can’t. My kids are home today for a visit and as most parents know, I would do anything not to scare them or put them through any unnecessary concern.

I am unbalanced, imbalanced. I cannot walk a straight line. My neurologist was cavalier the first time he saw this, in fact he ignored it. Why would he ignore something as strange as that? Maybe because he ran over his 8 minute limit.  I don’t like him. I don’t like a doctor who does not acknowledge emotion, who pretends it is not there. I need to switch. He didn’t want to give me this second MRI but my” huggable rheumatologist” insisted. He is a doctor I respect. A person that you can be proud to call your doctor.

I need a favor, I have asked a friend and she can’t do it. I have asked another friend and I haven’t heard back. I hate asking for favors. Do I ask again or just call a cab? I’m too tired to even make this decision. My room is disgustingly disorganized and I don’t have the energy to clean it but I will try for ten minutes. There is a banana bread in the oven baking for my son for his 24 hour visit, I would have crawled to make that for him, I had to lean on counters but I did it. I just hope I don’t burn it since I am lying down upstairs.

I’m getting very tired. Tired of tests, tired of illnesses, tired of sickness upon sickness piling up on me. This blog is the friend I can always talk to. I do not tell my mother half of what is going on because I don’t want her to worry. Here, I can say anything, I am not seeking pity, just a few minutes of peace of mind. It generally doesn’t work but I give it a try. I have nothing to lose. I cannot hide because I am here, just because I don’t complain does not mean I don’t hurt.

photograph credit to the noted photographer above.

no rights.

FIBROMYALGIA: Now With Added Trigeminal Neuralgia

English: ‘A pain stabbed my heart as it did every time I saw a girl I loved who was going the opposite direction in this too-big world.’ (Photo credit: Wikipedia)

Hey Fibro. Can you hear me? I’m a patient, you’re the chronic illness.

Just pile it on, OK?  Not that you are asking my permission or anything, you’re not. One diagnosis after another, I figure there’s more to come, how can I not think that way? I feel betrayed by my rheumatologist who said it wouldn’t get worse. Yeah, right.  I’m an almost 57 years old, (OLD is the operative word,) woman who is utterly falling apart physically. Nope, not even plateauing. Yesterday afternoon I had an appointment with a neurologist for TMJ, I was referred by a doctor I trust. TMJ  causes a great deal of pain, daggers of sharp pain waking me up in the middle of the night, relentless pain. All a chronic pain patient needs, right?

“I don’t have ANYTHING to do with THAT” “I can’t help you at all, said the young doctor.  I don’t  know why she sent me here, he said, that is not  part of my job.” When things are down, and I am tired and feel sick already, I go down and tears started running down my cheeks. Here was my chance to take away one type of pain, I knew it wasn’t going to take away my Fibromyalgia, my chronic pain, my Imbalance, my sleep disturbances or  up my energy levels but at least I hoped that something, anything could take away one of my many types of pain I have. I asked him to call the referring doctor, really, the only doctor I trust in the world.

He was gone a good fifteen message and I took the time to “pity party,” now sobbing into my hands and getting red and swollen with a drippy nasty face. As Oprah has described it, I did “the ugly cry.” I cried  loud and hard and the people at the desk must have thought I was having  a mental breakdown which in a way I probably was. So, after my cry-fest the doctor comes in and says there has been some progress. “Really?, I thought skeptically” I was still crying and he was not acknowledging that in any way whatsoever. Not one, “I’m sorry you are so upset.” Not a :, “I know this must be difficult for you”, NOTHING. He ignored me. I found that appalling. He looked through me. Thanks, Doc. My internist did that too a long time ago. I remember it in detail, she, I’m sure doesn’t, just part of her busy day. DOCTORS:  Be human, SHOW EMPATHY. PLEASE

He then proceeds to tell me that I have another condition ( as if he forgot a teaspoon of sugar in a recipe) : ANOTHER CHRONIC CONDITION NAMED TRIGEMINAL NUERALGIA AND it has to be addressed immediately, which means another medicine, probably damaging my kidneys and liver so it has to be watched carefully. Blood tests, follow-up visits etc,

Guess what? Not only did I try it for two days but it made me MORE dizzy and light-headed. I missed a festival in town that I was longing to go to, I missed out. Again. So, tonight I stopped. I was supposed to double the dosage today and I said “No way.” I was tripping over everything and I looked and acted drunk, without have had anything alcoholic to drink. I COULD NOT WALK, EVEN WITH MY CANE. I’m taking over control. Got it?

Chuck the new medicine and call the non-empathic doctor who will most likely call in another script and call it a day. But this time, I’m ready and I WILL NOT CRY. I WANT ANSWERS AND NO MORE DRUGS IN MY SYSTEM. TELL ME WHAT TO DO WHEN I GET THE ATTACK, NOT PREVENT IT. NO MORE MEDS! I’M DONE.  I AM IN CONTROL, NOT YOU. ANY QUESTIONS? I’LL BE HAPPY TO ANSWER THEM, OH, AND I WILL LISTEN AND RESPOND BECAUSE EMPATHY IS MY STRONG POINT. LEARN SOMETHING.

And Now I Shake

ECG complex. (Photo credit: Wikipedia)

For the last six weeks I’ve felt light-headed; I’ve often brought this up to my internist and she has always said that it’s my low blood pressure ( 80/60.) “Salt your food” she murmurs, “stand up slowly from a seated position.” Then she adds: “That happens to me too!!” (Now I’m SURE we can be best friends because we have so much in common.) My husband insists that it has been happening more often and he has nagged me to see my doctor for a few weeks now, I’ve refused.

Yesterday I had an annual physical with my gynecologist who I like but totally FORGOT that she’s a worry wart like I used to be. Notice the PAST tense. I casually asked her if she thought I needed to see my internist about this small issue. She said “yes” and “that it might be a problem with my heart “valve.” The only “v” word I expected to hear from her was “vagina”( if there are any guys reading now is your opportunity to run) valve did not make me happy. I finally confessed to my husband, tried not to look at his smug face and called to set up an appointment.

I described feeling light-headed, having to bend my head down to prevent fainting, feeling very warm, getting a massive headache but never passing out. I could reach a chair or a bed and sit down and I’d be fine in a few minutes. It never happened when driving and obviously if I felt weak, I wouldn’t go out. It did happen going up or down stairs but I always held on to the banister. It was NOT, in my estimation, dangerous.

Now that I had conceded, a nurse gave me an EKG which was perfect with the oddest exception. My whole body started shaking. Once or twice lately I have noticed that my body starts shaking uncontrollably and I can’t stop it. I have asked my husband if he could see it and he has always said “no.” I think it’s one of those “guy” things. The nurse noticed it right away, I’m sure a best friend could as well.

So now, I could add “shaking” to my long list of maladies. Along with Fibromyalgia, almost passing out, Thyroid disease, Auto-Immune disease of the thyroid,  impaired hearing, I shook. I felt like one of those bobble heads except it wasn’t just my head that bobbled, it was my body wobbling. A nurse took five or six vials of blood and then the doctor told me (wait for it…) I had to go to the cardiologist for an echocardiogram and even worse, a stress test. No, No, No! Ugh, this is sweat and embarrassment  in front of others and I hate that kind of stuff. I gave my husband the evil eye, actually two evil eyes. They scheduled me in six weeks, obviously not a crisis situation to them (Thanks, honey!)

My doctor used this new phrase at least five times during my seven minute visit: “due diligence. In my language that means ” I’m running these tests to cover my ass.” For someone who used to get anxious for days, even weeks, I only got anxious for about five minutes which for me is zen-like (and that’s when they  told me I had to see the darn cardiologist.)

As soon as we got home,  I made myself my old standard comfort food, an American cheese sandwich on soft bread with butter, some salt-ridden baked sour cream and onion Lays potato chips( for medicinal reasons only) and a cold Yoo-Hoo to drink. For dessert, nothing speaks comfort more than a dish of really rich vanilla ice cream, softly melting in a red ceramic dish. No drugs of any kind were necessary. No jelly on pizza, I required nothing else. Damn, I was proud. But, I still have to do those stupid tests unless, as my sister suggested, I cancel?! What do YOU think?

Woman in Café with Yoo-Hoo and Cigarette, after William Glackens (Photo credit: Mike Licht, NotionsCapital.com)

Fibromyalgia And Flunking The Sobriety Test

Sunset Police Car (Photo credit: Wikipedia)

Calm down, it’s not what you think. I can’t handle alcohol on ANY level, never could. Way back in my college days my friends would order a pitcher of beer and a Coke for me.  My now 20-year-old son’s advice is that I didn’t try hard enough. I should have just kept drinking because “it gets better.”  I’m sorry. I’m apparently a disappointment to my daughter and husband too.

One would think with my distaste for alcohol I would potentially have NO trouble with the law. That might not be the case. I went to my doctor, months ago, because I had consistent tingling in my legs and my internist (of course) referred me to a neurologist. The appointment was made and I forgot about it while my husband and I vacationed in Rhode Island for a few days. We had bright, sunny skies, we dug our toes into the silky sand, and ate raspberry scones, home-made sticky baked french toast for breakfast every day with a bowl of fresh blueberries and inexpensive lobster rolls at night. We napped daily.

One day I remember walking towards our car to my husband and then……. I was down……. I was on the floor, lying down, face down and have no idea what happened. Did I black out? Maybe. My knees and legs were bloody and filled with gravel but luckily my face was in good shape, apparently at the last-minute my husband said my arm came up instinctively to save my face. I hadn’t slipped on anything, there were no stones to tumble on, there was no logical reason this happened. I hadn’t twisted my ankle or sprained any ligament. I just went down. I wasn’t happy. Nobody was happy.

Upon my return I was even more nervous about seeing the neurologist who had ordered a plethora of tests including a CAT scan. My brain was perfect, the tests were perfect. Except for one. I could not, literally could NOT, walk a straight line. He told me I flunked that one outright and he had no idea why. He also felt there was no need to pursue it after seeing my brain scan. It’s true that a symptom of Fibromyalgia is imbalance but drunken-looking imbalance? Let’s say I was tired and driving sloppily, imagine a police car pulling me over and asking me to walk a straight line, maybe they would even give me a do-over since my breathalyzer test was normal…. I swear I’d be in the slammer pretty darn fast. Hopefully, you can still make one phone call. Even better, do you think I should get a doctor’s note?

Dear Hillary,

Official portrait of Secretary of State Hillary Rodham Clinton. (Photo credit: Wikipedia)

I want to start by saying that I know I should use your formal title because I do, very much, respect and admire EVERYTHING you have done. I just feel we, as in “we the people” know you” so please forgive me. I want you to know that your friends, fans and neighbors are all worried about you and you are in our thoughts every day. I’m not just saying this; it’s true.

I’ve never been one to focus much on the health of any political figure before but now I find myself waking up in the morning and checking the news for an update about you, in fact checking several times during the day and of course at night, before I go to bed. As a mother myself, I cried when I saw a photograph of Chelsea’s “anguished” face as the newspaper described it. Granted, she could have just spent a harrowing time with the paparazzi or gotten an old, limp salad in the cafeteria but my bet is that Chelsea is worrying about her Mom. I didn’t see a photo of your husband, President Bill Clinton, exit but I can imagine he is very concerned as well.

We all are but I want you to know THIS HAS NOTHING TO DO WITH ANYTHING POLITICAL NOW OR IN THE FUTURE.  I don’t care about 2016, I only care about today. I want you to be well enough for your doctors (we share one of them, by the way) to release you so that you can go home. Home to New York or Washington, wherever you choose. Your only prescription now is for rest and relaxation. Think of it as a Hillary cruise. If you want red tulips, you will get red tulips, if you feel like pizza, people will deliver whole pies to you. An egg sandwich in the morning, well, we all know what deli that will be coming from!

I just wanted you to know that all of us are thinking of you, praying for you (those of us that pray) and keeping you in our thoughts. Get well Madame Secretary of State, because we really and truly miss you.

P.S. Not to belabor a point  but I still believe that you are OWED a great big apology and a HUGE bouquet of flowers and dark chocolate for at least a year from those uncivilized idiots (should I have not said that?) that did not believe you were sick in the first place. I’m a Libra and we believe in fairness, that they haven’t apologized, to me, is utterly shameful. You are a better person than I am. This is why we need you! Come home soon.
With great fondness and admiration,

Laurie from Hibernationnow.worldpress.com

Begging For A Diagnosis

Sad Little Girl (Photo credit: Wikipedia)

I found myself in the waiting room of my Ear, Nose and Throat Specialist this afternoon actually praying for an inner ear infection. Yes, that’s what I said. I was praying for a diagnosis that would be fixed with a quick supply of an antibiotic, preferably a Z-pack. Done! No such luck. My ears have hurt me on and off for weeks. This was the second time I had been to the doctor in two months. Not only did my ears hurt but my entire face, under my eyes, my head, my forehead, my entire body was aching, as if I had the flu but I knew I didn’t.

Please, I groaned to myself, let me have an ear infection, or a throat infection, even eppiglottis, the dreaded disease that I have received so much mail about when I posted a blog about it. (* Calling Eppiglottitis A Bitch Is A Vast Understatement) Even that I could take if I have a diagnosis but no, my throat was fine, my ears were “perfect” I felt like I was five years old, alone, horrible and to the doctor I looked “good.” I’ve felt worse and worse and I don’t know why. The doctor told me it was probably my Fibromyalgia/TMJ……Nothing I didn’t know already. “Gee, I’m sorry,” he said “wish I could do more.” He patted me on my shoulder as he stared at my breasts and promised to call in a prescription strength type of Advil (which, he never did.)

My only hope is that I have my physical next week with my Internist ( a woman who does not even BELIEVE in Fibromyalgia) but at least she can run some blood tests and send them to my Rheumatologist. This is SO FRUSTRATING. Everyone just wants to throw different drugs at me and I don’t really want to take them. Take this, says the Rheumatologist and this, says the ENT,  but you need energy so take this, and there is nothing for pain so just live with it. I am tired of living with it and I can’t discuss this with my sister (or even have her READ THIS ENTRY) because it is not a safe topic for us. We can talk about many things, this is not one of them. Unless she can give me concrete examples of what exactly she would like me to try and how I can pay for it.

All I know is that I have been diagnosed with Fibromyalgia for six years now and after it got better, it has now gotten worse. Does Fibromyalgia get worse? Is this something new? Can I live like this? Is it the weather? An anxiety attack? I feel so vulnerable and so lousy that I cried in the waiting room from feeling so poorly.  I noticed a father with his teenage daughter; I missed my father who would have known how to kid me like that father did. I missed mine so desperately. Do emotions come to play in all of this? I think it’s probably all of the above and none of it is pretty. Not for me, not today, not until I feel better. I’m complaining, in writing. I should just shut up.

*https://hibernationnow.wordpress.com/2011/02/03/calling-epiglo…understatement

The Fibromyalgia Sorority- Update

Ping Pong game by Parker Brothers, The Children’s Museum of Indianapolis. (Photo credit: Wikipedia)

August 5, 2012

I promised an update and I keep my promises but it’s nothing “earth shattering” as my Mom is fond of saying. It’s just the same old, same old. I did go back to the neurologist for results but everything was fine. To me, that was good. He figured out that the tingling and imbalance could have been caused by the drug Topomax, but why I fell flat on my face for no reason he couldn’t answer. To him, he looked vaguely disappointed a) because he couldn’t help me and b) I was no longer of interest to him. He made that VERY obvious. The difference between the first and second appointments were like night and day. I stopped Topomax which now leaves me to go back to the Rheumatologist but I am not in any hurry. He was the one who prescribed Topomax. (Did he not know better?) From one doctor to another, I feel like a ping-pong ball.

Today, it is beastly hot and humid and I can barely get from the house to the car, this weather is not ideal for those of us with chronic pain, imbalance, weakness. There’s only a couple of days during a few weeks when we have ideal weather but that does not guarantee feeling well.  The winter is really rough, icy winds and snow but the summer’s humidity feels like I’m suffocating.

I went with my daughter to one store for shopping for college and there was no way I was going to miss it but I sure wish there were more chairs and benches to sit on for those of us who need a break. I’ve found holding on to a carriage is helpful and sometimes, if I really feel bad while I am there I can use the electric carts. I didn’t want to do that with my daughter but that’s a blog post of a different kind…..I’m sure those of you with teenage daughters understand.

How can we look forward to any day when we don’t know how we will feel? I used to set things up in advance, make plans with friends, go into the city, or to a movie or a museum. Now, it’s like the earth has to be aligned in 940 ways before I even think about it. Not too hot, not too cold, not humid, not torrential downpours and then we have the symptom assessment. What hurts, what doesn’t (rarely an answer there) have I slept well? Everything is so complicated now. I envy my old life, pre-Fibro, but I have accepted it is gone. I wish one or two of my family members would accept that too.

People still say stupid things and most people, unless they have Fibromyalgia, JUST DON’T GET IT.  Those of us who have it are unlucky members of a very big club. We understand EACH OTHER.  Fibro sufferers, if nothing else, be glad we have each other. Perhaps we could all become sisters (and some brothers) in a Fibromyalgia Sorority. Fi Kappa Fibro anyone?

Fibromyalgia Update: It Just Gets Worse?

Magnetic Resonance Imaging – Human brain side view (Photo credit: Wikipedia)

July 30, 2012

My Fibromyalgia update is not full of rainbows and unicorns and fairy dust, it’s plunking along through a slow and painful process, apparently it goes on forever. Now, in addition to Fibromyalgia and the auto-immune disease, Hashimoto’s Thyroiditis I’ve had to deal with Nuerological issues as well. Imbalance? Ah yes, you know it well.  Now I have another doctor to include to my semi-annual repertoire  and I have a feeling it isn’t ending here. Just a feeling though…..

I’ve already had a brain and cervical spine MRI, the results were fine. My new Nuerologist (yeah, now I have one of those too) sent me a note saying that everything was normal given my age. “MY AGE” as if I don’t feel old enough. I do remember in the exam he exclaimed” So, what you are telling me is that you were basically a healthy woman until you hit the age of 50.” That grounded me, but it is so true. I know we weren’t supposed to trust anyone over 30 when we were young but no one said anything about falling apart when turning 50. You would think that would be written somewhere, or at least a warning sent when you are 45, (“ENJOY YOUR NEXT FIVE YEARS!!!!) not that we would have believed anything so preposterous.

Whoever says 50 is the new 40 does NOT have Fibromyalglia, I can pretty much bet on that. Tell a person who has Fibromyalgia that 50 is the new 40 and you are most likely to get a response like “my ass it is.” I couldn’t agree more.  I am so frustrated with different doctors and medications, I’m tempted (merely tempted) to talk to my Rheumatologist and see what he says about stopping Savella. I know, I’m ALL talk, Savella helps me, at least a little. However, my Rheumatologist put me on something called Topomax which he said would help me and I took it for many months.  I took it until my balance was so off kilter (even more than usual) and my forgetfulness was at an all time high AND I was getting tingling in my feet and hands; that scared me. One look at my medical history and the Nuerologist immediately said: Topomax: First two side effects are tingling and imbalance. Seriously, Did my Rheumatologist not know that? You would think that my Internist would be involved in some way but if it isn’t strep throat or a sinus infection, “it’s not her job.”

Once in awhile I have taken to using a cane, especially when walking our really strong 5 month old puppy, but with an 18 year old daughter, who embarrasses easily, I think I will use it more in three weeks when she goes to college. Wednesday, I am going back to the Nuerologist for results of my tests, I will see what he has to say. I’m bringing my husband along with me to listen; I am a horrible “listener” at a doctor’s appointment. I think it’s called the “white coat syndrome” whatever the doctor says, I seem to only remember the one or two bad words. My husband is much better at things like that than I am.

Next week I will go to the Rheumatologist and try to straighten things out. I would ask one doctor to talk to the other but in the past few years I have noticed they really don’t like to do that. I know, “LIKE?” I will insist, because the only one who can manage my healthcare, let’s face it, is me.

I’ll keep you posted.

Calling Myself A Complete Idiot Would Be A Supreme Compliment

Stir Crazy 3 (Photo credit: The Michael)

A few weeks ago I posted a very disturbing blog post that scared me and some of my friends and readers. It was called “Worried Sick: One Crazy Ass Blog” and people I didn’t even know got worried about me. Days later and a tears shed, it prompted me to write a gushing thank you post and sincere apology.

That said, I now believe I am a stupid and utter asshole, although I can’t say for sure. However, I realized today that I think I did something totally silly and possibly quite dangerous. In my “fibro-haze/know it all “frame of mind, I realized that I had stopped taking one of my Fibromyalgia drugs, Topomax (used also for epilepsy and a variety of other illnesses) cold turkey. What makes it even more insane is that I had checked this out once before and knew to taper it. My excuse? I forgot. Reason? Fibro Fog Forgetfulness. We just can’t win, can we?

I researched it today and found out that yes, stopping the medicine without tapering it can produce some significant and intolerable symptoms including severe anxiety, discomfort AND tingling of the hands and feet etc. I’m just lucky I didn’t end up in the Emergency Room (although that was listed too.) However, I was curled up in the fetal position in bed feeling a bit suicidal.

I won’t ever be that cavalier again. I think what happens with those of us with chronic pain is that we take so many different medications (none that seem to help us at all) that we figure stopping one won’t make a bit of difference. Wrong.

I was totally out of my mind to have not thought it through in my search to lower the amount of pills I was taking. Again, when they say “consult your physician” as much as we may hate to, understandably so, at least we should call our local pharmacist. Besides, at least we know their number by heart.