The Big Swallow

Dear Dr. Batman.

Every night my mouth gets dry and I try to convince myself that it is from the allergy pill I have taken. In the morning I can barely part my lips and my whole mouth feels like it is full of cotton, as if I had been at the dentist all night getting painful injections, mouth puffed up and out, red cheeks pulsating with pain.

I swallow carefully, a few times in a row, even though there is nothing to swallow. I reach for the tall glass of clear, cold water with lemon that stands next to me on the wooden bed stand and take a few tentative sips.

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Yes, my mouth is dry, check. It is a bit scratchy, check. Can I call it an official sore throat? No. Is it “The Dreaded Eppiglottitis?” Thank God, no or at least not yet. I rue the day that happens to me again, for the third time (or is it the fourth?) My fellow eppiglottitis sufferers know what I mean, they know EXACTLY what I mean; it’s not a pain that you can ever forget. When we get it, we get it BAD, there is no way of getting it any other way. It doesn’t come in light, medium or strong degrees, it only comes in “devastating and horrific.” Believe me, childbirth is nothing compared to this.

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Apparently, there is a vaccine that is given to children that could prevent this from ever happening to adults again but no one will give it to us grown-ups. I’ve asked “why?” a bunch of times but apparently “it’s not used for this purpose.” There are a million things used for different purposes that help other conditions not used for the original intentions but help others with different maladies. Why no one will look into this, I HAVE NO IDEA.

I was put on methotrexate, a drug for cancer, when I didn’t have cancer. I had Fibromyalgia and my hot-shot brainiac crazy as all hell Rheumatologist prescribed it to me. It made me feel great, best drug I was on. Unfortunately, it had bad side effects so I couldn’t stay on it but boy, did it help. He thought outside the box and while I couldn’t take the drug, the man was a genius. A crazy, arrogant genius but still, a genius.

Epiglottitis is a bitch, there’s no way around that. It’s a sure-fire way to get the worst possibile pain and a speedy pass to the Emergency Room if you feel your throat swelling up and you have trouble breathing. I don’t think it’s too much to ask for SOME CREATIVE doctors to at least look into the reasons why we CAN’T have the vaccine that is given regularly to babies.

People, doctors, do not want to go out of their comfort zones, even if it is to save people an enormous amount of pain. A medical friend in England asked me why the American doctors were so hesitant to do this, I had no answer. To her, there was an illness and a cure, it made sense. It makes sense to me too. What happened to “First do no harm?” I guess that is antiquated or is now synonymous with “It’s not in my job description.”

That really stinks. Help us, someone, please.

There is only one pediatrician that I remember from when my adult children were little that I can imagine going out of his way to even think about this. He recently returned from helping sick people in Africa. He’s THAT kind of nice guy. Please, Dr. Batman from MKMG?

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If anyone, I know you would try or at least think about it, It would mean so much to so many people. Please, will you just read this letter? I know you will do at least that much, I wouldn’t bother to send it to anyone else.

You’ve always been kind to everyone, moms, dads and especially children. Just take a quick look.

Thanks in advance.

Eppiglottitis Mom

Same Old Pain, Now With Migraines

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I’m used to the pain I have from Fibromyalgia, it’s not bad most days, no pain killers needed. Sure, there are a few days, mostly weather-related, that it gets worse but I can  stand that too, most of the time. It was under control until one day when I started having a headache that would not go away.

 

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I’ve had plenty of headaches before mostly in the middle of my head and that’s how this one started so I thought nothing of it. I took Tylenol, the only medicine I am allowed  (Chronic Kidney Disease) to take, but it did not help. It was a mild headache for two days, I thought nothing of it.

Suddenly, the pain started crawling up on the left side of my face. It settled there like a jumbo jet that had just landed at the airport and was pulling straight into the proper gate. Passengers came off the plane then airline crew, the plane was cleaned and this baby was not going anywhere tonight. The headache had landed.

 

It’s hard to imagine I have another pain symptom but I accept it as my curse, this ugly life of mine. At almost 58 years old I now get migraines. “Welcome to the club” I mutter angrily under my breath, asking: “Why me?”

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The first migraine, which ended me in the Emergency Room of the hospital moaning in pain and begging for a shot of something, anything, to relieve the intense, hammering pain happened a couple of months ago. “Nice to meet you, meet your new doctor, your Nurologist”.

I thought it was a one time thing, A visit to the Emergency Room, a shot and hydration and two days later I was fine. I went home where the lights were dim, I was safe in bed and all I wanted was darkness and no company, no radio, no television, just black solitude. I laid on my back and pulled the covers over my forehead, yes, this was my safe place, I promised myself the pain was over, gone for good.

Unfortunately, it came back with a vengeance twice more. Once a month ago and one two weeks ago.  I tried all the tricks, the medicine to supposedly make it go away before it really hits, a dark room, breathing slowly, ice, pressure points, Reiki, meditation….you name it, I tried it but it is clinging on to my head with traction and beating harder and harder.

It is now moving to the center of my forehead and the hammer is following after the movement, banging away, beat after beat rhythmically while all I can do is shut down and shudder.

Deutsch: “Kopfschmerzen”. Die wohl berühmteste – stark von James Gillray beeinflußte – Arbeit in einer Reihe von sechs Blättern “medizinischer” Karikaturen, in denen Cruikshank Krankheiten als Teufelswerk brandmarkt. Erstmalig publiziert: 12. Februar 1819. Originalgröße: 210 x 255 mm (Photo credit: Wikipedia)

I know this isn’t fair, I know that life isn’t fair. I have accepted this new symptom because i don’t have a choice. It has joined the family of maladies that already exist, trapped in every limb of my body, from head to toe.

 

Since I was five I’ve always had a very low tolerance for pain, my parents used to tell me that. If one orange baby aspirin worked on other children to get their temperatures down, I needed two. I am still that way, believe me, it isn’t fun.

Recently, a friend told me to push my Internist to check more complicated Lyme Disease tests and I will do that. What are the chances? I don’t know but I will try. I don’t want to get even remotely excited.

Been there, done that, way too many times. I have no hope. I feel battered.

Enough already. This is getting old. Fast.

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I Need Help: Fibromyalgia-TMJ

It’s a pain like no other, hard to describe, impossible to treat, at least for me. Falling under the Fibromyalgia umbrella, TMJ is like lightning striking your ear and jaw straight through your brain and head. It kept me up all night; no pain-killer helped it, no heating pad, ice, soft foods.

The pain shoots, there is no warming and no treatment that helps; I didn’t eat any hard foods yesterday. My jaw usually pops and goes back into its socket; I live with that. I was a bit worried about the Presidential election but not enough to be awakened all through the night in utter agony as if I had been shocked by electrical wires, moaning and groaning all night long. I was restless, weary and I hurt so badly; I toss and turn to see if lying a different way will help. Nothing works.

Even though I have had Fibromyalgia for years, the varied symptoms (maybe because of the cold weather?) are worse now. I wish I could scream out loud and get it all out of my system but I can barely open my mouth. I try not to speak, to hold my lips a certain way; I pretend I am a model who is posing for a sculptor who is doing an impression of me in burnt-red clay. I can’t move my lips or my mouth for him to get the correct shape so I try to relax my mouth, my muscles until I find a single spot that doesn’t make me cry out loud. I try desperately to hold that same place so I don’t scream; I am just asking for tolerable not even for feeling good.

I have dealt with many of the other symptoms of Fibromyalglia in an accepting way as possible but nothing has been as urgently painful as this. I’ve been to ENT’s (Ear, Nose and Throat Specialists) convinced I have had flaming ear infections until the diagnosis was always the same. TMJ.  Now, I no longer go to the doctor, I know what it is and I huddle under blankets, drink liquids through a pink striped straw and pray for the pain to subside.

Those of us with this chronic pain disease have so many different symptoms, yet there is usually one or two that affect us the most. This is one of them for me. Pain, out of nowhere, unexpected, usually starting in the middle of the night and continuing as long it takes. I’ve tried the mouth guards (sort of), I’ve tried heating pads, I’ve tried deep breathing and meditating. TMJ lurks in the quiet of my brain and body and jumps out of the darkness to scare me with its razor-sharp accuracy. It attacks with no warning, no signals. Unlike migraines, there are no warning signs. This, I find hard to deal with, hard to surrender to so much pain for however long it decides to stay. For once, i am helpless in this situation, I feel disempowered and small, the pain has caught up to me and it is winning.

PFAM: You Call Them: CURVEBALLS?

To me, a new symptom is a curveball, it’s a nice term for something that feels so bad. I feel them as gut-wrenching hits to my stomach that makes pain reverberate everywhere. Shocks, starting one place in my body, going through my body.

Here is how it all began: my body fell apart in my late forties and crashed at age fifty with menopause. It wasn’t a horror story or a deep, high-pitched scream of severe decline. I had a few anxiety attacks here and there, a little more intense than PMS and hot flashes more frequent than before but not much drama, no sweaty sheets, no wringing tee-shirts.

In an annual check-up I got the eagerly anticipated diagnosis of an under-active thyroid. Didn’t this mean I could eat what I wanted and the extra pounds would melt away? I thought so, but unfortunately not. I was prescribed Synthroid. I took it for weeks and weeks with no change. I was sleeping all day and everything hurt: my teeth, muscles, joints and nails. But, as I was told, thyroid symptoms need time to adjust and so I was a good patient and waited for it to go away. It didn’t.

Three months later I still had aches and pains all over; I described it as having the flu without the temperature. I was back in my Internist‘s office weeping on the table, unable to swing my legs to a seated position; telling her I felt horrible. I couldn’t move, I couldn’t walk, all I did was sleep and ache, non-stop. My Internist looked straight through me,  as if there weren’t tears dripping through my swollen green eyes. She turned away, clicked on her fashionable high heels and left the room saying under her breath yet still audible” I can’t do anything more for you.” My friend and I call her The Ice Princess.

She sent me to see a Rheumatologist in her big medical group ( factory). This doctor told me I had scoliosis (the one thing I do not have) and that I had an auto-immune disease which would lead me wide open to catch all other auto-immune diseases so I went home and googled it. I did indeed have an auto-immune disease of the thyroid called Hashimoto’s Thyroiditis: the solution?  Synthroid. I was on it already so why was I still so tired, and in pain every waking moment. I couldn’t sleep deeply either anymore. Nothing made sense to me, all the doctors said completely different things and no one, no one, acknowledged my pain.

I then went to three other Rheumatologists before finally one of them came up with a disease called Fibromyalgia. “I believe you have been misdiagnosed” the second Rheumatologist said.  A chill of joy went up my supposedly not-s0-straight-spine. A new diagnosis? A new cure? YES!!! I will be cured. Thank you! I was deliriously happy for a few moments until she then told me there was no cure. Curveball? How about complete devastation?  And so, it started again, new drugs, all different kinds, some helped a little, some almost killed me, some were radical and only used to save organs when a transplant was required  others were benign but NOT helpful at all. One kept me in a bathroom for two straight months unable to leave my house.

With the firm diagnosis of Fibromyalgia I knew I was in a whole, new world of chronic pain and no cure. New symptoms would appear from time to time and I would consider those the worst curveballs of all. I would groan when my legs starting hurting so badly I cried out in pain; some were illnesses that were old yet I had never associated them together, others were new and I would groan and moan at yet another symptom of some elusive yet particularly painful, widespread disease. I had always had a small bladder so I never thought about the fact that I had to pee often until the diagnosis of Interstitial Cystitis was given to me, hair loss, body aches, muscle aches and those pesky stomach aches I used to get time after time? The ones that made me get all cramped and bloated and then doubled over with intense pain?  IBS, also listed under  symptoms of Fibromyalgia. Each individual symptom that I thought lived alone, now lived within a deeper, bigger context.

As strange as it may seem, having a chronic illness composed of all these connected parts made me feel better mentally if not physically. I thought I was an outcast  but now, the diagnosis of all these links put together and given a name made me feel more credible. When I get a new pain, a curveball, if you will, first, I fight. Then, sometimes I cry. After that I do some research and realize yes, this is part of that huge family called Fibromyalgia. Then I understand and accept. Fighting back at the curveballs, the new symptoms, in the long run, doesn’t help. Trust me, I know.

Think of us as strong weeping willow trees that lean and sway with the strength of the wind. We don’t break from the force, we learn, as hard as it is, to lean in and go on.

The Emotional And Physical A, B, C’s of Fibromyalgia

Fibromyalgia or any other illness combines physical symptoms AND emotional ones. This is a blog post that is not original. I just borrowed it from friends because that’s what friends are for! Here are mine:

A- Anxious, Aches, Achy, Anxiety

B- Bloated, Blue

C-Cramps in feet, legs, hands…etc, CURE??????? (not).

D-Depressed at times, Denial, Disapointment to others?

E-Embarrassed, (no) energy

F- Fatigue, Fibro Fog, Forgetful, Fat, FRUSTRATED, Fearful

G-Grateful it’s not life threatening

H-Hands that are swollen and ache, Hurt

I-Incomplete

J-Joint pain, joyous for a good (day, hour, minute)

K- klutz, I trip, I fall and I am uncoordinated

L-Lame, Limitations

M-Medicine, moody at times

N-Neuropathy

O-Oh what a pain in the ass this really is for all of us.

P- Pissed off, Pain

Q- (no clue or rather, qlue)

R-Realistic

S-Sad, Suffering, Savella

T- Tired

U-Unsure

V- Very tired, very frustrated, very much want carrot cake

W-Worn out, weary

X- Xanax for anxiety (the same answer everyone else gave!!!)

Y- Y? because I love you……

Z-zzzzzz’s for sleeping a lot

The Beauty Of My Fibromyalgia

Image by freefotouk via Flickr

My husband came home from town and told me that he heard an update about a mutual friend; that she was at the end of her life.  She has ALS, (formerly called Lou Gehrig’s disease) a horrible, disease that affects thousands of people every year. I felt terrible for her and her family and know how hard that disease is for everybody.  I pictured her in her wheelchair with her beautifully spun white hair coiled behind her in an old-fashioned bun, the bun that my grandmother in her nineties used to wear every day; held together with old-fashioned black bobby pins. There was one difference, the woman in this story is not in her nineties, not even close, she is 43.

I have Fibromyalgia and Hashimoto’s Thyroiditis and before you write me letters about how pain is all equal and that pain is pain and we have our right to our pain I will tell you this: the stripping of your body, one by one and of all your faculties, is something I would not trade for and neither would you. The last vestige of communication this woman, this YOUNG woman had been struggling was to try to write something with her twisted hand on a computer generated machine. Fibromyalgia pain IS pain. I know I have pain, I understand it and I can communicate it, I can’t solve it. When there is nothing that helps me feel better, at least I can verbalize this, at least I can try to focus on a pretty picture of strong red berries on a simple branch. When I clutch the banister to be able to go up and down stairs, I am mostly doing it myself. If I can’t and need a hand, I will ask for it and accept it and will be able to have the dignity to say “Thank You.” I can ask my daughter about her day or my husband’s first day of work or my son’s admission to colleges. I am able to do that and am thankful for it.

My husband, the most patient man on earth, gets irritated and annoyed with me when he asks me questions about the type of pain I am in. He is direct, like a prosecutor: “is it muscular?” is it in your joints?”  “does it stab, burn, tingle, come in waves?”  “is it sharp, is it dull, does the pain move around?” I’ve always been vague in my answers about how I feel physically because I am the type of person who can’t verbalize my symptoms well. Fibromyalgia is defined as having pain all over and that is what I have. Is it muscular? Yes, Is it your joints? Yes, It is all over and hard to differentiate from one Doctor’s appointment to another, Yes. We also have Fibro Fog, our endearing term for forgetfulness, makes us forget how things were yesterday compared with today.

Fibromyalgia changes every day, sometimes every hour; there were times when I was sure I had a really bad virus but my Doctor just told me they are “flare-ups.” My mother was concerned because I was sick so often, I never knew I had flare-ups, I didn’t know what flare-ups were; no-one ever told me.

I am not saying that your pain or her pain or his pain is any less uncomfortable because it is not life threatening. Listen to me: I am saying that pain is pain, and that it can be unbearable and it does affect your emotions and social skills. But, at least it does not deprive me, me personally, of the ability to still connect with my loved ones and friends and I am able to communicate.

There is no competition. Pain is pain is pain. My friend who is dying from cancer is fighting every day as she has for five years before her breast cancer metastized into brain cancer. This is not a game where whose pain, whose life is worse. This is MY opinion, own it or reject as you please. I do have enough pain to consider myself suffering. I may not have control over my pain but at least I still have control of all my faculties.

We are all at risk for everything, like everyone else in the world. There is so much sadness: health, terrorism, wars, economy,  that sometimes I need to focus on just by breathing, in and out, in and out.  Sometimes I need to slap myself out of my self-pity and give thanks for the things I can do and more importantly send blessings to those who are less fortunate than I am. Now.

The Sad Mom

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I’m cold, terribly cold and I am not even outside in the twenty inches of snow we have. I’m in my bed with four comforters, a heating pad for my neck and shoulders and my feet are still freezing. I need to find those fuzzy socks that help tame the frozen beasts that are my irregular toes.

I’ve had Fibromyalgia for about five years now. In all this time I have tried many different medications and I have seen two or three Rheumatologists.  Still, no relief.  I am taking Savella and I am on the maximum dose and I swear it did work  for a while but now…..nothing. Does this happen with Fibromyalgia? I also keep getting new symptoms like my hands  and elbows and legs cramping in the middle of the night, symptoms that I was unfamiliar with but are now constant. I don’t understand this illness; perhaps nobody does.

Does Fibromyalgia encompass every symptom that has ever been heard of? Is it progressive? Why do I have more symptoms now than I did five years ago? I don’t know what to do. I don’t know which doctor to trust, if any. I also have an auto-immune disease called Hashimoto’s Thyroiditis which complicates my overall condition. I’m not feeling too lucky today; I’m just feeling sad, with no hope.

I have read countless books and articles, each one of them bringing a little piece to the puzzle but none of them fitting together to make a full-fledged picture. Ask ten doctors advice, you get ten different opinions. If you are lucky to get a doctor that doesn’t roll their eyes in disbelief, you consider that a win.

I would be open to new kinds of treatment , massage? acupuncture? diet? but I am not sure where to start. Not only do I not know where to start, I can’t pay for it even if I did.  Everyone “means well” and adds their opinion:  my mother says I should “just get out of bed and exercise more” when she doesn’t realize that getting out of bed is in itself is a painful exercise. My husband thinks I should go back on auto-immune drugs but I’m the one getting all the side effects and chemicals. Nothing seems to work. Nothing.

The only people who understand me are the people I meet in Fibromyalgia/Chronic illness chat rooms. I fantasize of a cure, an Oprah A-Ha moment but know that is unrealistic. I don’t like being the mom that has to be dropped off at the door of college presentations for my son and daughter, so I can sit down. I don’t like being the mom that sleeps a lot, when I can, and groans walking up and down our staircase.

I could easily start weeping but stopping would be that much harder.