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 (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.

Are You Even Aware, Do You Care? (ChronicBabe Blog Carnival)

Image by Alessandro Vannucci via Flickr

Dear Doctors,

Fibromyalgia Awareness Day is May 12, but I bet mostly people who suffer from this debilitating illness know that.  There are people, fellow doctors even, who still think this is all in our heads. That IS the most insulting thing of all. Do you think we would choose this way of life? On purpose? Do you think that we would want to feel pain in every muscle and joint in our bodies for the fun of it? Maybe we just want attention, is that what you think? Do you know that I was diagnosed with two chronic illnesses within a matter of months and that menopause was the catalyst? Did you know that it was menopause that turned my body inside out and sideways, plumped up my lower belly and shattered my metabolism?  Do you know I eat less than the average child but I don’t lose weight and walking around the block twice is considered a work out?

I am going tomorrow to my third Rheumatologist to see what he has to say. He’s local, convenient and since I have had such different points of view from previous doctors I’d like to add yet another opinion to my massively, confused, Fibro Fog memory. That is if I can remember what we talk about which is as likely to happen as Christmas in July. I will try though, I will write things down, I will do intensive listening. I want to hear what you have to say. I wonder if you realize that a Fibromyalgia patient making an appointment to see you is not simple at all? It isn’t, we have to get there too and that is always a work in progress.

Did you know I saw a famous Rheumatologist for years, only to find out later, that the strong, immunosuppressant medications he prescribed could have destroyed me? That the medications he prescribed for me in his fancy office with his “Best Doctor Awards” on his walls, are only supposed to be used to protect a vital, organ? I didn’t know that either until another Doctor, actually two, told me.

Awareness is not just acknowledging a disease or many diseases; it is also imperative to take the accompanying emotional distress that it brings too. It’s no longer just me, it’s me and my shadow. We bring baggage, physical and emotional because many of us have dealt with this elusive, enigma of a disease for many years. Please, bear with us.

Even if you mean the best, you might not want to say “I know how you feel” because unless you are a patient, you don’t.  You can’t walk in my aching shoes, the soles of my feet are rigid, hurt and are on fire, right to the top of my head that aches at times with horrendous headaches, pounding me like turbulent waves on stoic rocks.  Are you aware, Doctors, that when some of  you treat us chronic patients like drug seeking  heroin addicts you demean us? You take away any sense of self-respect that we once had in the past? We know you try to help us but please understand how we feel. We feel pain, we just want some relief, once in a while when we need it the most. Try and understand that, we’re not looking for a quick high or to be comatose on life-altering drugs. We just want to be able to breathe without pain for a short time, ONLY, when we need it the most.

I’ll leave you with one thought. We know you try to help make us feel better. Just remember a moment of compassion, a light hand on our shoulder, an extra second of your smile means a lot, especially when we feel we have so little. If your son or daughter had the same disease and our same symptoms, would you treat him or her any differently? If you have to think about it, please consider treating us, like you would them.

Thank you very much for your time.

Ordinary Days Are Magical

Image by circulating via Flickr

I woke up this morning, not to the shrill blaring of my radio alarm clock, or to a shaken shoulder but when my eyes opened and turned to the window.  It’s been a long few days and today I have nothing planned. I did a mental body check of all my ailments: Fibromyalgia aches and pains were present, my right leg still hurt  but was manageable. My knee still throbbed from my recent fall on the icy pavement but my mood was good. I had ten hours of sleep and while the sun was not shining it could have been. There was no snow in the forecast, reason enough to celebrate.

I started driving to the supermarket, because food, comfort and love equals nurturing for me.  I didn’t really need much except an idea of what to cook for tonight’s dinner and a destination. It’s been a long time since I’ve been in the grocery store and new items celebrated my return. Marshmallow yellow chick peeps out the day after Valentine’s Day? Okay. A discounted box of chocolate covered cherries? I love those and I am not proud. Sugar cookies to make for my children and various treats for my dog, Callie’s, upcoming birthday in March. (shh! it’s a surprise party.)

I felt a little guilty because the simple, routine, “mom” things that I was able to do today, I did with less grief. As many of you know, my friend Dawn died on Friday night  and after the wake and the funeral and some time, today I woke up void of a dark, painful shadow. Then I remembered Dawn’s family, her father and mother, her husband, her siblings and her three children not able to escape the haunting grief. I felt guilty for being relieved and it pains me to write this.  I have been in their place before when my father died so I know, I truly KNOW what they are going through and how much it hurts and for how long.  I grieve for my friend, the twinkling green-eyed Dawn, but not the same way her children, her husband and relatives are grieving. Not even close. I feel bad that I have the luxury of distraction.

Strolling through the market I decided what I would be making for dinner, ravioli with a thick marinara sauce that I add a small can of tomato paste to, a store-bought fresh pizza, mozzarella and tomato salad with basil with drizzled olive oil and a multigrain loaf of Italian bread, still warm to the touch from the bakery. It’s rare that my family  eats at the same time these days but I feel happy with them just being home, together for a little while. Next year, with my son in college, it will all be very different.

That is why today, a simple trip to the supermarket and a walk through Target with a Starbucks gift card felt special. I bought a skinny vanilla latte with a shot of espresso to manage my afternoon weariness.  The simple touching of my dog’s fur, and playing with her outside in the snow felt like a gift.  An ordinary day at the supermarket felt, to me, like a five-day vacation to the Bahamas. It’s true that you don’t appreciate normalcy when you have been overwhelmed with an abnormal amount of grief and sorrow or horrible pain from any disease. A simple day that ends with a hot bath, sleepy eyes and a half-smile, is indeed, a miracle.

These Days

Image by Jinx! via Flickr

I have been feeling extremely discouraged and blue; I’m back to square one, for the sixth time, in my search for a successful treatment for both my Fibromyalgia and auto-immune disease, Hashimoto’s Thyroiditis.  It’s been over 4 years since my initial diagnoses and I have been given drug, after drug, after drug.  I start a new medicine, each time, with hope and innocence and excitement like a flirtation with a possible new love. Two months go by and then I find out that it was, again, just a fantasy. Side effects are my enemy, I generally am the person that fits in the “possible and infrequent side effects.” Another dream deflected, another dream deferred. Back to the drawing board, again; I eliminate the medicine and so too my hope.

I’m drowning my sorrow in leftover Halloween candy and cookies:  Almond Joy bars, Kit Kat bars, Nestle Crunch, Heath bars, Reese’s peanut butter cups, Twix bars, Keebler chips deluxe  cookies and pretty rainbow cookies filled with marzipan and jam. For my anxiety attacks that wake me up at 3:00 am and keep me up until 6:00 I occasionally take Xanax, one prescription drug that I trust.

Yesterday, I started Savella for my Fibromyalgia and decided to stop using Arava (an immuno-suppressant drug). True,  Arava kept my energy up but my legs ached continuously,  like someone was squeezing them into a vice and wouldn’t let go. I don’t want to be on as many drugs anymore. I want to simplify my life, my body. It’s always a long stretch between taking the new medication ( 6-8 weeks) to kick in and likewise for the drug to leave my body.  My husband kept mentioning how the Arava gave me energy and he was right but at what cost?  It was only the other day that it occurred to me that I don’t have to live with the side effect of leg pain if I don’t want to. I’ve been on this drug for months and the thought just occurred to me. I have a choice but with that comes the acknowledgment of failure.  Am I so used to pain that I feel it’s acceptable, even normal, to have some?

I’m alone in my search because no one really knows how I feel except me and even I get confused, my symptoms blur together. It’s hard for me to describe pain that is not throbbing, jabbing; how does one explain “constant?” I go by hunches and I try to listen to my inner self. My body is telling me now to get rid of the different chemicals and if I have to, start again, reevaluate in the future. For now, I will try to nurse my defeat with sleep, and when awake, look bravely at the sun in the sky while it lasts. I dread winter; I always dread winter. My bones feel frosty and taut, my body aches with pain and my mood becomes as dark as the early sunset.

*These Days by Jackson Browne

Well I’ve been out walking
I don’t do that much talking these days, these days
These days I seem to think a lot
About the things that I forgot to do
And all the times I had the chance to

And I had a lover
It’s so hard to risk another of these days, these days
Now if I seem to be afraid
To live the life that I have made in song
Well it’s just that I’ve been losing for so long

Well I’ll keep on moving, moving on
Things are bound to be improving these days, one of these days
These days I sit on corner stones
And count the time in quarter tones to ten, my friend
Don’t confront me with my failures, I had not forgotten them

My Most Recent Compliment

Image by sparrowsfall via Flickr

A Gift For You, A Gift For Me

 

The Phantom Tollbooth

I’ve always wanted to make a difference in someone’s life. I’m not talking about the usual suspects like my children or my husband. I’ve always thought about people who have influenced me, people who hold a special place in my own heart. Just recently I met a friend through the Fibromyalgia/Chronic Pain site on Facebook. The ladies in this “special” club have bonded in a way that no-one can possibly imagine. Perhaps we should call it “The Sisterhood of Pain.” I noticed that one of the young women had a quote from the “Phantom Tollboth” on her page, a book I know well. It turns out that this young lady was obsessed with the book; she loved it dearly and it was very special to her and her daughter. I just happen to know the author of the book, Norton Juster, very well. He’s a family friend, he was at our wedding, we see him, from time to time, when we visit my in-law’s. I asked my father-in-law to buy the book for Lyn and have Norton Juster autograph it for her. I didn’t tell Lyn, I lied and told her I wanted her address to send her a card. A couple of weeks later the autographed book and my card arrived in her mailbox. It turned out that it arrived when she was having a particularly difficult day. She was THRILLED and she was so thankful for the gift. She also said that I was a really nice person, that I  was special and had made a difference in her life, that I held a special place in her heart. I was happy I could give her a gift, happier that she gave me a gift too.

We Didn’t Ask For This (FIBROMYALGIA)

As a Fibromyalgia patient I need to explain a few things that the general public doesn’t understand. Actually, there are things that WE don’t understand but we are clear on one thing. This is NOT in our heads. Whatever crack pot thought that one up was clearly not a pain sufferer. We didn’t ask for this disease that makes us  live in a state of chronic pain.  Believe me, no person would want this every single day of their lives, no person would choose this.  We live our lives on the edge of our seats for two reasons: 1) because sitting one place for more than three minutes will hurt and 2) we can’t make plans ahead of time because we don’t know how we will feel on any given day.  People ask me to do things and I always use the same line: “Let me see how I feel.” Of course I have said it over and over again but people who are not patients tend to forget.

Which reminds me: forgetting things, we start to speak and stop, we go upstairs to get something and then not remember what we are looking for.  No, we are not feeble-minded, nor are we crazy, old, senile or menopausal. (Ok, we could be a mixture of things) There is something called FIBRO FOG which makes us forget, makes us as cloudy as fog rolling in to San Francisco. It is not our fault. Do you think I like looking like an absolute fool? Don’t you think it stings when my children say “I just told you that”or “Mom, I’ve told you that story 100 times.” I’m sure you did but “Fibro-Haze” got to me once again. I honestly don’t remember the last time I had a totally lucid conversation. I seem to drift half-way through. My husband recommended that I take stimulants, the pills given to people with ADHD. Thanks, but I’m on a lot of medications (that don’t help) as it is. Please don’t play doctor, you can’t imagine how many people do that to us. We know you mean well, it just doesn’t help.

If patients, had wanted this stubborn illness our homes would be filled with Fibro-Friendly items. We would all have an in-house masseuse. The refrigerator would be filled with our favorite soft foods,  soup, pasta, cheesecake with an apricot glaze, soft and chewy brownies that won’t activate our TMJ. We would all have extra-king size beds so we don’t have to bump into our partners in the middle of the night. Hair stylists would fluff out our thinning hair to make us feel better about ourselves. Our bedrooms would be equipped with huge 3D, High Definition television sets, the exact height that is comfortable for us so we don’t strain our already tense and knotted necks and shoulders. All houses would come with nurses and aides, to drive us, do the laundry, cook dinner and attend to our every need.  Our medicine cabinets would be filled with newly invented “Miracle-Meds”, an innovative medication that actually helps and relieves all of the pain. Not cocktails of useless pills that don’t do anything except make our stomachs, and IBS,  feel all sorts of crazy weird.

Chronic pain, with no relief is horrible. Please don’t talk to us like we are  psychologically challenged. There is nothing wrong with us except that we hurt. We hurt constantly with no relief. We have pain that is relentless, pain that is constant, pain that we have no choice but to accept it in our daily lives. We also don’t want your sympathy, but we would love your understanding.

Prednisone Bitch, Part 3, (Going, Going, Gone?)

Image by DianthusMoon via Flickr

This is the last phase of being on the drug Prednisone. I am in the final phase taking 10 mg for three days and then I’m done. The amount of energy I had the first few days is gone. I am no longer cooking up batches of baked ziti nor am I running around the kitchen like a commercial for  robotic, easy, fast, cleaning. I am not darting around but still have the quick heartbeat and a little of the energy left; but not much.

Unfortunately, my brain and my body are on different speeds. I don’t like the feeling of my brain running on overload and my body beginning to lag behind. I am more uptight and it’s harder to relax; it’s also harder to sleep fitfully. I have nightmares every night and I don’t know if there is a connection but my sleep is definitely not deep and not peaceful. My muscle aches and pains were definitely better in the beginning with the large dose of Prednisone but it is hard to differentiate if it is because of the medicine or because I was speeding so much I just didn’t notice it!

The Prednisone, is slowly melting away from my body, like the body of the bad witch in the Wizard of Oz when water was thrown at her (I’m melting…..) I hope that in a few days my body and mind will be more in sync. Now, I just want to get the drug out of my system and go back to whatever “normal” is for me and that is something that changes day-to-day.

I’m coming down from the rush and speed of Prednisone, a very powerful and intense drug. I was glad for the fake recharging of my batteries but now I am just waiting for it to leave my body, little by little and take with it the fastened heartbeat, like an injured bird that is attacking my chest. It’s time to slow down, naturally.

Blessed With An Ordinary (?) Day!

Hallelujah!!!  The thrill of an absolutely “normal,” uncomplicated day.  Abnormal,  for those of us who suffer from any chronic  illness.  The sun was shining and my aches and pain were minimal; I felt great and full of energy. It is a wonder to be me today. I happily went grocery shopping, bought exotic pluots (plums/apricots) ran into an old friend, so nice to see a familiar face,  chatted and hugged!  Drove to the Thrift Shop to see if  I could find cheap toys for my dog’s upcoming 9th birthday and also bought a soft-as-a-bunny mens 3x Tee-shirt to wear to bed.  Took my daughter, to the new friendly TD bank where we deposited all our coins into their new coin machine with great glee, and met the new Manager who smiled at us both and cheered us on. Scored a free  lime lollipop and a bright green pen. We left giddy with cash, smiling and laughing,  just the two of us.

When we came home from the bank we ate dinner.  Two tasteless macaroni and cheese (in my opinion ONLY) Weight Watcher meals and a huge salad, to which I added, red grapes, soft, silky avocado, bits of hard Jarlsberg cheese and baby carrots. My daughter had ranch dressing, I had bright orange Asian Sesame Ginger which came pouring out of the bottle at an alarming rate creating a huge orange puddle. Listened to Kansas on my computer “Carry On My Wayward Son”and emailed with a friend. Stroked my dog Callie’s soft fur, found out someone in our neighborhood was caught in a prostitution ring! So much happening in just one day, all my senses heightened, the sun, glowing brightly in the sky; or maybe it was just me?

A great day with a minimum of aches and pains, mostly my stiff shoulders and the small of my back but I can deal with that. Tested positive to the Thyroiditis Hashimoto’s antibody which I knew I had but somehow I felt reaffirmed. My mother e-mailed me the name of a chiropractor/homeopath person, forgetting that all these things require money we do not have. We have money issues to begin with but she meant well. You are your parent’s child forever.   The guru Dr. I see in the city is madly expensive but I have to see him every 3 months, there is no choice, we have to find the money for that!

After dinner, Jillian baked a chocolate cake with chocolate frosting for her friend, Katie’s, birthday. I helped her with it and while I do not know that much about baking cakes I am good with functional and basic things, like getting the cake out of the pan. Showed Jillian my way of frosting the cake, with swirls, and it actually made her  seem in awe of me: “Wow, Mom you could be a professional baker.”   I felt like the Betty Crocker of the 21 st. century while my daughter looked on with great admiration. She’s 15 and a half, that was a rare and wonderful moment!

Do not overlook your “ordinary” days. Those of us who have few of them are delighted when it happens because it happens so rarely.  Enjoy shopping, going to the Post Office, driving to the library, all because you can and don’t complain. When these days occur to those of us with chronic illnesses, we do not complain; we celebrate. Here’s to Ordinary Days!