Energy

Physical and Emotional EnergyScreen Shot 2014-01-20 at 10.59.05 AM

Energy, or lack thereof, is one of the main complaints of all the varied yet connected physical illnesses I have. I honestly don’t remember what energy feels like anymore, except for the brief time when I was on Prednisone. I felt half my age and filled with methamphetamines. The world looked bright, I appreciated every second of being in that world, I felt grandiose, I was so happy to have this reprieve to what I perceived as “back to normal.”

When I had to taper down slowly I understood that this was not a drug to take for a long time. But, I distinctly remember when the drug disappeared from my body. Similar to the colorful, glorious leaves in Autumn slipping slowing to the ground until none were left… .. I looked up and saw only dry, miserable lonely branches. I remember specifically the day that the medicine left my body completely, I put my head in my arms and sobbed. There was an old movie called “Cocoon,” where elderly people were given the gift of youth for a short time, their bodies replenished, their illnesses healed, their faces back to their youthful selves. They seemed so happy until the potion wore off.

Of course the potion wore off, doesn’t it always? Aging is inevitable, loss of hearing, sight, lack of energy. I have been without that energy, that youthful quality for over seven years now but not just from aging gracefully, I could handle that. I am lying in bed with my back twisted, the heating pad behind me, feeling quite sorry for myself for actually being disappointed that I had to cancel a dentist appointment because of back pain. If that’s not pathetic, what is? It was a place to go, to get out of bed, leave the house and drive, to talk to new people, nice people, unknown people.Who understands this except other people with these disorders?

I blame my Thyroid (Hashimoto’s Thyroiditis) and Fibromyalgia for my lack of energy yet I blame the nasty, hateful people around me for draining me, for stripping me of happy energy for my soul. They are not to blame, however, I blame myself for allowing them to do that. I control me. This is my responsibility, not their responsibility. Let them rip each other apart if they want to, I don’t have to be involved with it anymore. That is my choice.

I will control whatever energy I have left. Physically and Spiritually.

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My Fellow Epiglottitis Peeps- A Follow Up

throat diagram

Image via Wikipedia

When I first had my two bouts with Epiglottitis (OUCH)  no one had ever  heard of it. Even my ENT said and I quote: “how the hell did you get that?”  If I could have spoken in spite of the pain I may have said ” How do I know? You’re the doctor.” But speaking, swallowing, breathing was pure torture and being in such intense pain makes you less than quick with a comeback. When I first posted “Calling Epiglottitis A Bitch Is A Vast Understatement” I wrote it for myself. Why did I have to get this pain? But, if it’s something unusual, it softly calls my name.

When I had Epiglottitis I told people it was the worst pain I had ever had, that childbirth was a cinch in comparison. When my two awful experiences had finally passed I asked every Dr. and medical person, if I could SOMEHOW prevent this from happening again. The answer was an unequivical “NO.” I scheduled an appointment with my internist just to discuss this and begged, pleaded and cried for the vaccine that is given to children. Another “NO.”  She said it was for infants only. That seemed drastically unfair. After all, if those babies could have it why couldn’t iI have it? Give me 100 times the dose if you want, anything not to have to go through horrific, burning, stabbing, knife-in-the-back-of-the-throat pain again.

How does one get it? What is it? Apparently, it’s a virus. I know, when there is something doctors don’t know for sure they call it a virus but apparently this is one and a nasty one at that. It could be related to the Herpes Simplex virus, I was told, but maybe not…..It is frustrating and painful and so far this year (fingers crossed) I didn’t get it but I do live in constant fear of getting it again. No joke.

Did anyone get it this year? I  hope you didn’t or if you did that it was a mild case (oh, who am I kidding there is no such thing as a mild case, it’s outright torture.) My ENT treated it with Prednisone, Valtrex and some special rinse, (and maybe something else, not sure) it helped…..after what seemed like an eternity.  It will not go away on its own, beg for pain medication.

For those of you who wrote back to me with your comments, thanks. We helped each other. Never before had I heard of this bolt of lightning in the back-end of the throat, and hearing from you made me feel better, validated. Unbelievably, my blog post “Calling Epiglottis A Bitch Is A Mild Understatement” gets so many hits on my blog consistently. As you know, I blog about everything: food, Fibromyalgia, feelings, fun, Hashimoto’s Thyroiditis, Chronic Pain,TV, music, food, children, parents, grief, love and loathing. I blog when I am happy or sad, about funny things, family (they are not too happy when I write about them) my dog and dessert. But, this post about Epiglottitis constantly and consistently gets hits and I’m wondering why. Do more people have it now? Did it become an epidemic? I thought I was the only one in the world that had it, (clearing my throat) twice.

Here’s to you, my Epiglottitis Peeps, If anyone has any updates or insights, let me know. Or if you have had it recently, I am here to commiserate. I wish I could offer you a magic cure, I wish I could offer myself a magic cure  but none exist. I’m here, though, to share your pain. Believe me, I understand it completely!

p.s. One important tip: if you have had this once, and feel a bad sore throat coming on, go directly to an ENT and not an Internist. My ENT gave me that advice, don’t wait around a week, like I did, waiting for it to get better. Get it scoped, diagnosed and treated before it gets any worse.

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

Bad Witch 4" x 4" Collage

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.

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.

Prednisone, Bitchiness And Me aka The Prednisone Bitch

edvard munch - the scream  1893

Image by oddsock via Flickr

I’ve been on Prednisone before, twice, and both times made me feel groovy, great. I was high on life, my muscles didn’t ache and I was a joy to live with…Not this time. There seems to be an evil lurker inside of my body making me say things without my usual filter and ultra-edit.  I don’t think I am making up the things that I am saying, I just think that Prednisone is making me babble. Like some people on alcohol, their defenses are down, their mouths are open and wide and sputtering. Prednisone to me, is like alcohol and it’s not being easily tolerated by me or frankly,  by my husband.

The worst thing about it? I really don’t care. I feel like a fight and am already on the way to one without stopping at GO.  I’m a loose cannon, feel a little speedy and don’t feel the love tonight. Not from the Prednisone and not from my husband who was/is the unwilling recipient of my sudden quick-fire burst of anger. I don’t think he is in the least bit amused.

I am a lioness growling, a bear attacking, a leopard changing and colorizing it’s spots.   I have never felt this way before but I believe I know what the side effects to Prednisone are….well, at least one of them. I’ll probably gain ten pounds just from eating salad and dry chicken and then I will really be hooting and hollering. Back off, man up, stay away, give me a wide berth. NO, I did not say GIRTH.

I am trying to breathe a little normalcy into my body but the nice person inside me, way deep down inside me, is not having anything to do with it.  It’s laughing at me, taunting me, making me grimace and snarl. This is only my first day of Prednisone, I have 8 more days to go. This could get ugly, oh wait; it already is.

The Tin Man Known As Me

The Wizard of Oz - March 17, 2008 - Act I_180

Image by Brian Negin via Flickr

I am in a world by myself  of chronic pain, fibromyalgia and thyroid disease, yet I coexist with many friends. Friends that have similar ailments, some have the same, others that defy diagnoses but the symptoms define them. I have learned we are more than the sum of our symptoms but I have not yet learned exactly how to deal with it emotionally.

There don’t seem to be medications that  I can take (or haven’t been told about) by the myriad of doctors that I go to help relieve my pain.  First stop, the Rheumatologist for my autoimmune thyroid disease known as Hashimoto’s Thyroiditis and for Fibromyalgia. After that, to the Endocrinologist for thyroid levels. My Internist, the Pulmonologist, the Opthamologist to check for narrow-angled glaucoma. I have seen more “ologists” than a healthy eighty-five year old person and I am not complaining for a second; these are the facts.

If people ask me how I feel, I am at a loss to describe the symptoms. The latest comparison I can make is The Tin Man from the Wizard of Oz, without the oil can. I am stiff, I hurt, I move at a slow pace. It is very hard for me to get in a car and get out, these are not smooth actions, often I am holding on and heaving myself up; sometimes once is not enough.  I have balance issues too. I keep trying new medications but haven’t taken one yet that truly works. These are immunosuppressant drugs that are supposed to help relieve the muscle pain and aches I feel all the time, the operative words are “supposed to.” They also take eight long weeks before they kick in…..I wait a lot.

Tomorrow, to “get me back on track” before starting the newest of medications that I don’t even have yet, I am supposed to take Prednisone, 3 days of 30 mg, 3 days of 20 mg, 3 days of 10 mg. I have been on Prednisone before and I have mixed feelings about it. While I had no bad side effects before, there is always that risk. The emotional risk, to me, is even harder. I felt SO GOOD on Prednisone when I needed it last year that when I started lowering the dosage, I actually broke down and cried. In a previous blog I referred to it as if I was in the old movie “Cocoon” where older people feel young again from a miracle and then suddenly a short time later they are themselves again, old, aching, and hurting badly.

Tonight I feel anxious, tired, discouraged and down. I think once I am able to sleep, I will sleep deeply. It is always a game: whether to nap or work through it. Today, I was determined to stay awake. I am  deeply worried about a friend who is very, very sick with cancer. I was too upset to nap so I decided to push through the pain and get busy.  I got myself out of the bedroom and went to the kitchen to bake home-made banana bread for my family. Mushy bananas, a little vanilla, some chocolate chips, some raisins and the basics, to occupy my mind, my hands, and most importantly, my heart.

Fibromyalgia? Auto-Immune Disease? Chronic Pain?

Oh me, Oh my. All of the above and then some. Diagnoses dished out like those colorful candy buttons on a long roll of white paper. Whatever Dr. I see gives me another diagnosis. I’ve taken Cymbalta when the Dr. thought I had Fibromyalgia from the tender points she pushed on my body. Now, that technique is not valid for diagnosing the illness anymore.  After that I went to an auto- immune specialist for the Hashimoto’s Thyroiditis and the new inflammatory disease he discovered.”You are a very sick woman” he droned.  I’ve been on Methotrexate, I’ve had Epiglottis, twice (severe throat pain is an understatement), and I fervently pray I never, ever get it again. I’ve been on Prednisone half a dozen times, Vitamin D, Synthroid, Plaquannel, Trazadone and more….

I was put on Cellcept (“the medicine that has the least amount of side effects”) to replace the Methotrexate (that landed me in the hospital) and after a month I couldn’t stand the extreme intestinal side effects (“only 8 percent of the people get it “). Lucky me!! I wrote to my Dr. and he said “give it another month” because I don’t think he believed how bad the side effects from this drug really were. I begged for some sort of stomach aid but he refused. “Give it another month,” he intoned flatly. End of discussion.

I’ve been off Cellcept for a week and a half and I am still suffering from the same severe intestinal side effects I ‘ve been having for two months. I wrote the good Dr. and told him I was coming in (as in squeeze me in) because the side effects were so overwhelming I couldn’t leave my house. “Oh, it must have been the Cellcept” he said.  (ya think?) My bad. He took me off the offending drug and promised that in 2-3 days I would be much better and all the symptoms would disappear. It’s been 6 days and counting…..

He did prescribe medicine to mask the symptoms and  when I take the meds they work, but alas, when they wear off, it’s really bad news. I can’t live like this. He threw around words like endoscopy, I added silently colonoscopy, what else? I see a trip to my Gastroenterologist in my very near future.

It’s been three years now since I started on this bumpy ride of chronic illness and I’m not much closer to a cure (I know there is NO cure), resolution.  I swing from wanting to get off all medication and trying to find the right one (the third’s the charm, right?).  I’m waiting a few more days and then I will, once again,  attempt to repair my own physically fragile life, to ask more questions and demand answers. Nicely.

Any suggestions? Any genius Doctors?  If I was incredibly wealthy I would head to the Mayo clinic but I don’t have that kind of money. Any rich donors? (just kidding).  I will also go to the natural pharmacist and discuss with him what might help instead of all these toxic medications I’ve been on. I know though, that genius Guru Dr. has another medication in mind for me so that’s in store for me soon, but not quite yet.

I’m done, pity hour (or 15 minutes) are over. I’m not going to think about it until next week, when I CAN TRY and do something about it. Have to go now. Guess where.