Fibro Life, Friday


Please, just let me sleep, don't find me...

I am too tired to keep my head up, I tried to make good on advice to get out more. As Fibro patients know, I’m paying the price. Minus two spoons. I owe two spoons from tomorrow, not that it really works that way, right fellow spoonies? We really can’t win either way.

I generally never complain about Fibromyalgia, Savella and Tramadol usually do the trick but then again, I haven’t pushed myself this hard in a long time. I really have to ask myself if it is worth it? When I am racing around town, doing errands, getting my hair cut, drinking a strong cup of coffee, going non-stop I am NOT able to handle it because apparently now, I am a wreck, a demolished car on the side of the road, Not one part left, it’s sitting up an embankment totally crushed.

I have given the same advice to my friends “don’t do too much” but I didn’t listen to myself today because I was on a new mission to “live, to explore, to get out of the house.” Yep, I overdid it.

I might be so tired that I can’t even eat dinner. Nah. Who is kidding whom? I’m sure I will perk up after food, I smell chicken breasts on the grill, the salad is on the table already, I’m chopping tomatoes for bruschetta. But, really, all I want to do is to curl up in a ball and somehow loosen the muscles in the back of my neck and fall asleep. I don’t see that happening nor do I see myself cleaning my room and organizing it.

Let me stay here, in the midst of my bed, covered with clothes and freshly washed laundry, next to my calendar and my phone and a pink and blue pen. I will push things aside in a corner, I won’t complain, not a sound will come out of my exhausted mouth except the sweet snoring sounds of an overtired, head-throbbing, weak patient.
Don’t tell anyone I am here, I am so broken I don’t want to be found. I just want to sleep. Shhh, please just let me.
* Two images should have appeared, if no images appeared, I will let zemanta support know again, feel free to join me. Thanks in advance. If they both appear, I will be delighted!
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Hasn’t It All Been Said Already?

My Life is getting old. Not just the years that have accumulated but the scenarios in my past and present, future too. If it’s not just one calamity after another, it’s another gross disappointment or health issue and the black cloud  that looms above us. Circling us like black hawks over newly killed animals waiting to swoop down excited to eat.

Black Hole Sun

Black Hole Sun (Photo credit: amira_a)

Yes, dear optimistic people, I do try so hard to project a positive image, I send healing thoughts and love to the Universe, I pray for good things for all and not just myself, I try to make a positive difference in the world in any small way I can. I smile, I care, I reach out, I do good deeds, willingly, lovingly.

What happens? Nothing much. If I can make someone laugh or smile that’s a definite plus, if I can offer an elderly person my arm to cross the street or to carry their grocery bags, that’s great, I feel good for a second. Then, that feeling goes away.

Day # 8

Day # 8 (Photo credit: .Nena.)

Poof.

Doing nice things is not the answer, I know, feeling good things will happen, is sure part of it but I’ve felt that for so long it is tiring me out. I have tried that approach for many, many months and I am burned out. I am  exhausted, hoping, that life will take a turn for the better.

Here we sit, my brown pillow and in the house on a sunny day, lying on the bed with no energy.  I could be doing many things but I have no energy, no will, just an overwhelming feeling of tiredness. I’m taking comfort in hiding, resting and blaming my Fibromyalgia for all that ails me and so much more.

 

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Whoever Said “Facebook Friends Aren’t Real” Is One Big, Stupid Idiot.

An American version of a fruitcake which conta...

An American version of a fruitcake which contains both fruit and nuts. (Photo credit: Wikipedia)

The holiday season is winding down and I’ve read blogs about fruitcake, go ahead, start the jokes… Pass them around like some people did (not me, kids) like a joint or bottle of beer when they were in college. I’ve heard it all, all the silly jokes how nobody likes fruitcake, and everything is artificial, ad nauseam.  My father, when he was alive, ate fruitcake joyfully and loved it; he passed that gene on to me.

I love fruitcake, I honestly do. For years I begged people if they had received fruitcake as gifts NOT to throw them out because I would happily take it off their snobby shoulders. Funny, in all that time, nobody offered me their unwanted fruitcake. Nobody, until recently, one of my Facebook Friends, Sarita, saw me talking about fruitcake and out of nowhere she offered to send me a mini fruitcake that was baking in her oven.

Sarita, is one of my group of Facebook Friends that share a common and unyielding illness. We all seem to have some sort of chronic pain disease, in my case, Fibromyalgia. Believe me, it is not limited to Fibromyalgia (Fibromyalgia generally doesn’t work alone) but comes with many other ailments. I also have an auto-immune disease, Hashimoto’s Thyroiditis and some of my friends share that as well. Others have different, chronic pain but we are connected, perhaps not in person since we live in different places but definitely in our hearts.

When I told my (adult) children that my friend on Facebook was sending me a mini-fruitcake across the country they looked at me with those critical eyes, and the “what are you crazy” stare? “Mom, they said slowly in single syllables, you. don’t. even. know. her. she. could. be. send.ing. you. An.thrax.” I had never heard a more ridiculous thing in my life. Of course I knew her, I have known her for years, we’re friends, we are here for each other, we support each other.  The fact that Sarita was a “stranger” NEVER ONCE crossed my mind because Sarita was my friend and I was hers.

“So, my observant 19-year-old daughter said,  you wouldn’t mind if I was corresponding with some random man on the internet and he baked me some cookies and sent them to me and I wanted to eat them? Well, now that was indeed different, I said. I have talked to Sarita on the phone several times, we’ve been in touch with each other for years and I am not 19 and Sarita is certainly not some stranger. However, my daughter was right, I would not feel comfortable with her taking candy from strangers but I hardly see it as the same situation.

Facebook Friends for those of us with common limitations are not only useful to us but sometimes life-saving, Who knows better what it feels like to be in a Fibro Flare than another Fibro patient? I don’t like to complain to my family or my friends at home because frankly, they just don’t get it. How could they? They don’t have the illness. I’m not saying they lack empathy (most lack it a few don’t) but my Facebook Friends understand what I feel, completely every single day.

To them, I say THANK YOU, for the love and support and the ongoing kindness. We are all here for each other and that means a lot. I need to take a break now, for some more fruit cake and with it some pumpkin bread as well. What did you say about my Facebook Friends? Yeah, that’s what I thought. It’s okay, we are all wrong sometimes……May God or Spirit or Angels Bless these special people in my Life. They are in my life for a reason.

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Begging For A Diagnosis

Sad Little Girl

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

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.

The Sum Of Me

Henri Matisse, The Dance I, 1909, Museum of Mo...

Image via Wikipedia

I am part of an internet group of dear friends who also have Fibromyalgia, a chronic pain disease. We generally talk about the effects of this leech, this parasitic illness and how it makes us feel and how it affects our lives. It is what brings us together; and we truly care about one another. Imagine, a group of people who you have never met yet you trust them, seek out their advice. These people really do know how your pain feels.

We could discuss things we used to do but cannot do now. For me, I would talk about gardening and how I used to have a big vegetable garden many years ago when bending down to my knees and getting up was no problem. I would reminisce about the bright green English peas that grew, the fiery red cherry tomatoes that bathed in the sunlight, two kinds of lettuce and thick, orange carrots. I could also talk about the three miles I used walk in under an hour with my work friends each day, outside, around a blue-green reservoir. Maybe I would confess I was a size eight for about two minutes and twenty years ago while I was struggling with infertility issues and the deep, emotional pain of that process. “If I couldn’t have children, I was going to be skinny” was my mantra as I made myself march outside.

The summer before I was diagnosed with Fibromyalgia, and my children were at camp, I would take the train to New York City and relish being surrounded by people from all over the world, hearing them speak, watching the beautiful, colorful outfits that so many people donned in shades of rose, green, yellow, blue, shades of white and grey. Perhaps I would see a Broadway show for half price, go to a museum, or back to the Village and try to recognize it after many years. Going in to the city was like having an international picnic without even leaving the gleaming Grand Central Station.  I didn’t worry back then about getting to the city and how much walking I would have to do and whether I had to take a cab because I was so tired and drained that I couldn’t put one burning, aching, painful foot in front of the other.

Many blogs I read are about chronic pain and diseases, and I wonder at their brilliance. It’s a dilemna for me because while I do write about my chronic illness or two, I write about everything else in my life.  Am I doing myself a disservice? It could be. I write about food, depression, fun, family, television, friends, travel, grief, cheesecake, chocolate etc.  It’s a mix and mash-up of a blog, like a patchwork quilt with different patterns and colors. Do I need to define myself more clearly?  I may have just answered my own question. I am all things, not just one.

I am a patient, a parent, a friend, wife, mother, teacher and student. I love many things: reading books with beautiful covers, writing, taking photographs of children or benches or boats. I love to watch red cardinals and yellow finches at my bird feeder and butterflies winking by me. I love to eat good food, I am sweet on sweets, I dislike alcohol; coffee, orange juice, chocolate milk or Diet Coke are my beverages of choice, I drink them all at different times.

I could choose to pick one subject to write about but, it would not be my true self, of that I am sure. I am all over the place with emotions and experiences, flying, sometimes crawling, like red, yellow, blue and black kites sailing in the gusty wind, all tangled together, or in peaceful harmony, sometimes independently flying free. I am a person, with many  facets. I am as many pieces of my puzzle as I want. It’s my puzzle, I need to make the pieces fit,  for me.

Prednisone Bitch, Part 2 (ENERGY!!!)

The Energizer Bunny

Image by Ben+Sam via Flickr

I just made 5  huge portions of baked ziti and covered them all with shiny aluminum foil. I put two small portions in the freezer, for my daughter (she’s a vegetarian) I made a big one for all of us to eat tomorrow night and made 2 to give to a friend.  I also made chilled peach soup with spices  for my friend and bought her a still-warm Italian bread from the bakery as well as a bag of brownies. I delivered the food, found room in our crowded refrigerator for ours and practically buried my head in the freezer to make room for the rest.  I have folded three loads of laundry, have one load in the washing machine that I will soon transfer to the dryer. I loaded the dishwasher and ran it, and then washed various pots and pans by hand, rapidly. This is so not me, this is me on steroids; I could be a walking, no sprinting, advertisement about drugs: this is my body on steroids, this is my body without; what a difference!  I am spritzing  Fantastik on paper towels to wipe up spills, I am cleaning up the house. My movements make me dart back and forth and I am talking at a really fast pace. I actually think my husband prefers me like this, the “energizer bunny” onspeed and not my usual low-key self. He better not get used to it because in a few days it’s all over and I will be back to my old chronic pain and fatigued self. Unfortunately.

I know it will be depressing when I come 0ff of this steroid high but it’s amazing how good I feel. Rush, rush, rush. My fingers can’t  type as fast as my thoughts are running, streaking through my head. My son, looks at me both amusement and  concern: “Mom, calm down” he advises, but I explain to him that I cannot. I will however, be back to my usual sub-par pace in a mere few days. As for now, I feel chipper; a little too chipper. Remind me later, friends, when this wears off, what it felt like to read this, to feel this, to embrace this because every day I will feel less and less energized, more and more lethargic. I am the movie “Cocoon” for those of us old enough to remember. I am “Cocoon” the re-make, 2010.

Luckily, the bitchiness of the first day is over and I am no longer throwing darts, figuratively, at someone’s head. I am not sending off vapid e-mails and insulting comments, that was bad-me, ” Prednisone Bitch-Me.”  Thankfully, she  has left, departed, disappeared, leaving behind sparks and energy.  It was as if wild-me had been let out of hiding after many years or I had broken out of prison. The energy is here, the meanness is gone, it was a good trade.

Perhaps I will go to bed late tonight ( can you see me tiring out quickly?) and do a few more chores, instead of what I usually do: read in bed, watch a little Food Network television ( or Bravo or Travel) and play on my computer. Luckily, I have already DVR’d a few shows, which I have never done before but accomplished that this morning after my first cup of really strong, aromatic, Bustello coffee. Now I know that I can watch these shows at my leisure, when leisure finds its way back to me, say in about 4 days or so. Right now, I can’t at all describe myself as leisurely.

The first night I was on Prednisone I was roaming the house, inside, up and down my 13  carpeted steps because I could not fall asleep, I was up until after 2am, now I know why. Last night, with my allergies so bad I had to take a Benadryl, I nodded off at about 12:30am. My usual bedtime sans Prednisone is about 10:30 and that’s on a really good night.

My mind races, my legs, that usually, carry the weight of the world, walking slowly  and painfully in sneakers has all but disappeared. I am practically frolicking. It’s like a vacation from chronic pain, fatigue, fog, and lethargy. I am very alert though when someone is speaking to me I don’t listen as carefully because my mind is already formulating the next sentence.

I’ve typed this whole page in less than a few minutes but don’t give me credit. In a few days I probably look back and say how artificial the feeling was, how the energy was just too much. Will I do that? Probably not. I will remember how I felt with great fondness and longing. This is not what normal people feel either, this is steroids, pure and simple, artificial and dangerous and today, it feels good. I’m not going to lie.

Inject Yourself !!!

It’s  been a very long time since I started my journey into medical madness. First stop: Menopause. Second stop: an underactive thyroid. Third stop: Hashimoto’s Thyroiditis (an auto immune disease) Fourth stop: Fibromyalgia. I was being treated for my underactive thyroid with  Synthroid and more synthroid. Cymbalta was added on top of Prozac, intertwined with various other drugs for various other ailments. Then, a very long period of feeling like I had the flu without a temperature, no energy, no strength, every body part and his brother ached, all I wanted to do or was able to do, was pretty much, sleep. I felt and looked like hell.

That was about a year and a half ago until I was forced to see a specialist in NYC that dealt with joint diseases and auto-immune diseases only. That became the start of more medicine, but more hope.  I had to keep a journal of how achy I was (yes) and how tired I was (still yes.)  Then came Plaquannel, high doses of Vitamin D and after that, folic acid. After a few more months he added methotrexate and to contradict some of the really bad side effects of methotrexate he added Levocoir or something that sounds like that.  That worked and it didn’t work, sometimes it worked and sometimes it didn’t. There was no rhyme or reason as to when it would work and when it would not. In addition, he had me see his colleague ( girlfriend) an OB-GYN, and start me on bio-identical hormones.  I always swore, absolutely, positively swore I would NEVER , ever take HRT (Hormone Replacement Therapy.  Again, I started rubbing the Estrogel in my arms every day. When does it stop? When do I stop?

Since I have not reacted most positively to all the drugs listed above, my guru Dr. wants to go to even stronger meds, including injectible ones. That’s right, injectable drugs, in my thigh, given by me, every day. From the diary he asks me to keep from one to ten, one being a mess and ten being (in my words)euphoric or on top of the world, I am at best a five. He is not happy with that number, he wants it to increase to an eight. I will never be a ten, with my auto-immune disease, but I should be higher than a five or sometimes a two. At least that’s what he says, my Guru Dr.  Me? I’m not so sure.

How much though, is too much?  How much more medicine to I want to take in my already overly medicated body. Why isn’t a five acceptable? Are these his standards, or mine? I am weary of taking stronger drugs and injecting them daily. For what? A higher quality of life? I have an acceptable quality of life and I am beginning to think that that’s enough for me. The name of the drug he wants to introduce by injection is Enbrel. Since I become hysterical at looking drugs up on Web MD, my husband always reads it first. For him to shake his head and say, “I’m not so sure about this one…..” is tantamount to me shrieking, feeling sick and fainting all at once. My husband is a calm man, I am not considered to be calm when it comes to medicine, illness or personal safety. I admit it. I worry.

Yes, I would like to feel better than I do but at what cost? Doctors often breezily refer to drugs with well known risks as if they were telling you to take a multi-vitamin.  I am going to have to seriously think about the next step, although I’m pretty sure I know what I am going or NOT going to do. I don’t want more drugs in an already inundated body. I don’t want to inject a drug that has more negative side effects than it does worth. I’m sick of all of it, sick of feeling poorly, sick of taking drugs and sick of Dr.s and yes, sick of myself.

I can’t tell you what I am DEFINITELY going to do, I need much more information. Why is a five in a range from one to ten such a bad thing? What about the hidden side effects of all these different medicines? And, what about quality of life? Maybe being a ten is not for everyone, or a nine, even an eight. Now I am going to weigh all the risks and get more facts,  but, for the meantime I will stay at five; and just be very grateful for that.