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.

We’re Allowed To Have A Horrible Day …..Or Two

dark and stormy

Image by lilli2de via Flickr

When I spoke to my friend on-line I told her I was thinking of writing a blog with the title “Losing Hope.”  I’ve learned to wait a little while and see how I feel later on. Granted, passion fruit sorbet and coconut sorbet helped a little. It was probably a combination of the sugar and the unique sorbet flavors that worked so well together.

The morning started with a phone call my husband made to a hiring manager. The good news? He is definitely the candidate that they want! The bad news? They don’t have the funding for the job.  This is the second time this has happened to my husband. He’s been unemployed for a year now. (Anyone know of a Software Engineer job?)  I see his sadness and as hard as I try to boost his spirits today I just sunk lower with him. I’ve been good and supportive but today was too much, so we acknowledged we were blue and then went out for an inexpensive Latin dinner (with a coupon) where he had tilapia (fish)with mole sauce and I had a quesadilla filled with spinach, mushrooms, cheese and horrors of all horrors, green peppers. After I finessed the green peppers to the side, I was happy.

We took our dog out for a short walk after dinner and as much as my joints hurt, and my knee locked, my fatigue overwhelming me, at least I did it. It was one of those perfect, beautiful, warm, dry evenings. It was also something my husband wanted to do and he does not ask for much. So, our 8-year-old mutt, Callie was in heaven, my husband was smiling and after giving myself a tiny push, I felt better too.

There were some “family” issues which bothered me but I got over it with helpful prompting from my husband as in “what do you expect? They always do that….”  Enough said. My mother warned me about not eating too much food on the free cruise and the chubby girl resurfaced and I felt my body inflate and swell.

It’s hard to be sensitive, I can be very empathic but also hurt easily. It doesn’t seem to be a lesson I’ve learned or accepted. I try to “not care as much” but it’s a skill I lack and don’t think I will learn it anytime soon. At least  I’ve learned to get over something quickly which in the past could have been long and drawn out.

I’m vulnerable, to diseases, to emotions, to temperature; we all are.  After trying to fight the knowledge of a cranky,  “snarky” day, I’ve learned (most of the time ) to just give in to it and ride the waves until everything calms down. You never know, maybe the next day will be filled with sunshine,  honey and bright blue skies; it’s possible. Allow yourself to have a bad day or more when you need it and don’t feel guilty about it; we deserve it.

Soggy Cereal, Wilted Lettuce, Elizabeth Hasselback and Me

I am too tired to think, speak, eat. Too weary to walk, talk, move. My body is aching and sore from being in the car yesterday for more than 4 hours total. In the car, out of the car, each movement is painful, uncomfortable and is such an unbelievable effort. It was visiting day at camp and we were NOT going to miss out on seeing our kids, who are  really not kids anymore, they are 16 and almost 18. They will, to us, always be our kids, our grown-up babies.

The Imuran medication which I take for the aches and pains of an auto-immune disease, Hashimoto’s Thyroiditis, an Inflammatory Disease, Fibromyalgia and possibly Arthritis, has not done a darn thing; at least not yet even though I have been on it for six weeks. I know, I know, I will give it 2 more weeks, just in case.  I’m tired of being a patient, even more so, a patient, patient. I want to stop all the wretched stiffness now; my body is wearing me down and my mood is plummeting. I don’t even think a good dinner would cheer me up and that speaks volumes,  for anyone who knows me. Food is Life, Life is Food. Too tired to even eat? Something is very, very, wrong.

I am part of a club that I don’t want to belong to.  Here I am amongst the champion women of chronic pain, chronic tiredness, chronic everything survivors club. These other women/friends have such better attitudes than me. Tonight my attitude is pure, personal, chronic misery. I feel dreadfully, chronically old. I am 53, I still feel 5 in my mind and over 85 in my body. I think young, I act young and child-like (ok, childish too sometimes) but I move like a very ill old person whose limbs  and joints hurt. Everything hurts me. I know it’s not the end of the world and there are far worse things, but I’ve been going through this for the last three and a half years. It gets better with one medicine and then I have to stop the medicine because of evil side effects. This is medicine number 3 and I don’t see myself going for a 4th. I’m so done.

I am even (gulp) considering a gluten -free diet when I return from vacation (a free cruise, I can’t start now!!)  and when school starts. I’m thinking it over and as much as a foodie as I am my health is more important than the taste of food. I hope. Did I just say that? Seriously?  I wish. I truly believe that because being on a gluten-free diet AND not feeling well will definitely put me over the edge. That, as Oprah says,” I know for sure.” I know there are gluten-free cookbooks out there but honestly, I will not spend my money on Elizabeth Hasselback’s cookbook, no offense. I will probably buy the “other” gluten-free cook book just because I find Elizabeth annoying. I am not saying she is a bad person but she is definitely annoying (not to mention way too conservative).  And so I sit, and wait and creak. Any comments or suggestions from you, my friends, about gluten-free diets would be greatly appreciated especially if you can talk me into being enthusiastic about it!

Feel Good, Eat Cake

I just read a friend’s blog and while I have never met her in person, I worry about her. There is a definite bond for those of us who have some kind of chronic disease or illness. We feel for each other, and we really do care. I see myself sometimes in her writing,  stressed out, anxious and at times depressed. I have been there, done that.

Luckily now (even though I still have the same illnesses) I have taken the time to listen to my inner self (when it works). Sometimes it’s better than listening to many other people. Who knows you better than you? Also, apparently the medical world is trying (and succeeding) in making women go crazy. Let’s blame them. In light of this, take the newest controversy which has been a staple in womens lives for years: (and encouraged by all doctors)  calcium supplements.” You MUST take them”, my gynecologist says. “Definitely says my internist,” you HAVE to, it’s for good bone strength and preventing osteoporosis.” Oh, okay, absolutely. Now, just recently “we did a little research and the calcium supplements are now related to an increase in heart disease for women.” Huh?  I don’t understand how on earth we are supposed to know what to do, what to take. No one is making it easy for us, especially doctors. Ask a number of doctors one question, take your pick of the answers they give you. Why does this always seem to happen to women and not men? How come they don’t get conflicting and controversial views half as much as we do?

It’s all personal choice. Remember the saying “everything in moderation?” (if not, my dad used to say it all the time). I think that’s mostly true. Denying yourself certain things, certain foods will make you (okay, definitely me) crave them more. So, if you want dessert, order dessert. You don’t have to eat the whole thing. Ask the waiter or waitress to give you half and put the rest in a container to take it home if you want. As my friend Bruce always said “no ask, no get.” It’s really as simple as that and a motto I live by. (Thanks, Brucie)

We all have our individual preferences and rituals. For example: I make a mean banana bread (if I do so say so myself). I know that if I add raisins to the banana bread I could probably, with enough time, eat the whole thing. However, if I put raisins and chocolate chips in (the family favorite) I don’t eat much at all. Why? I don’t really like the addition of chocolate when I love anything raisin-like. It’s all a matter of trying to think things through first and that, I admit, is harder than it sounds and it  is an ongoing problem.

Let’s all try to worry less, walk a little more, take in a few minutes of sunshine and try to live life day by day. Not only “one step at a time” but one crawling, aching, stiff joints and baby step at a time. We’re all in this together.

On Being A Patient, Again

I never stopped being a patient, not since my thyroid went out of wack 3 years ago, not since I was told I had Fibromyalgia (and then told it was a “lazy diagnosis”)  Not since the prednisone, the hospitalization for eppiglottitis the 24/7 cough that would not go away, not since I was sent to the Pulmonologist, the ENT  the addition of 5-7 different medications. Not since my stint in the packed emergency room with an overnight stay in the hospital with the worst pain I have ever had in my life.

Here I am again, world! Stuck and pissed off with yet another chapter to my ever-so-boring and relentless saga of pain, chronic pain, auto-immune diseases, Hashimoto’s Thyroiditis, lack of energy and tonight,  a really bad, horrible, disgusted and angry, almost-in-tears mood.

The latest is that my Synthroid level ( TSH) is very, very low, too low said the doctors.  To those in the Club of Thyroid Disorders out there, (COTD- I made it up but it works) I know you will understand. The T4 is perfect. One doctor, the evil endocrinologist (lower case on purpose) sent a prescription (albeit the wrong prescription) in the mail telling me (no, writing me) he was surprised with my numbers but I should reduce the Synthroid medication (buzz word) to 50 mcg. First I was at 88, then 75, now 50???   That’s like telling someone who has the flu, to get up out of bed and do somersaults while standing on their heads, backwards.  I’m down enough people, now this? It makes no sense.

I wrote to my Guru Dr. in the City who handles the type of Autoimmune Disease (Hashimoto’s Thyroiditis) as in***THYROID DISEASE  to tell him. He suggested that my” Endocrinologist” do a simple TRF blood test and he guessed I might have something called Secondary Hypothyroidism ( I know, I could so be on Gray’s Anatomy with the amount I’ve had to learn and remember.)

Here’s the problem. The nasty, dull, mean-spirited endocrinologist (lower case on purpose again) who I am going to DUMP as soon as I find a new one, refuses to talk to me on the phone. Just for a couple of questions. “No, come in”,  he said. “I just want to ask him a question” I pleaded to his nurses “No, come in.”  I’m seething. First of all I have never heard of a doctor that won’t take a phone call for a question (I wasn’t demanding to speak to him at that moment) and that absolutely refuses to return a phone call from a patient. Second, he knows about my Guru Doctor in the city since I have copied him on everything. (Do you think this could be a terrritorial thing?)  Third, he did not believe that I had, indeed, a note from my Guru Dr. to suggesting he test me for TRF (whatever it is). No. What? You heard me. No. No phone call, no question, no way, no how. “It is too difficult to explain on the phone” the nurse parroted. Are you kidding me? I had one question about the blood (yes, in the lab in the office) test and a simple thought: wouldn’t it make sense to test the TRF level FIRST (as my Guru Doctor said) then to start on a regimen of a new medicine that could take 4-6 weeks to kick in? Isn’t that throwing the donkey in front of the carrots? (or whatever that stupid expression is.) Not to mention, I do not want to go back to a doctor that treats me with such disrespect (and he always has). I know he doesn’t know that the fifty dollar co-payment would be hard for our unemployed selves. I understand that, but, a 30 second phone call?

Well, you know what the answer is I’m sure. “No”. So here I am, calling new Endocrinologists (one is on vacation until the 20th, the other does not return phone calls) waiting to make an appointment. Oh dear Lordy, Lordy, it’s July and the doctors (at least the ones I’m trying to reach) are on vacation, and of course you cannot leave a message.

I have that creepy, queasy, angst-ridden feeling in my stomach. What now, I ask? I can’t reach any doctor AND short of sending an “I BEG of you” message to my Guru Doctor (which I will do anyway in the early a.m.) I will be sitting home in a flurry of frustration and anxiety. I will be sitting on my bed, fed up, confused and furious and yes, a little scared too. A little courtesy, perhaps DOCTORS?? Yeah, right.

I feel totally helpless and demeaned. I feel anxious and confused and ignored. Does anyone understand this?  Is this the time for an out and out binge on sugar- laden treats?  Can I run and hide from my anxiety for a few minutes with cookies and chocolate,  and that sweet powerful surge in energy? This doctor says Yes. Absolutely. Starting Now.

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.

We Laugh, We Cry

6/24/10

Last night, on instant chat, I talked with my friend P. for a long time. She and I are sisters in this crazy world of  chronic pain and difficult, unusual symptoms. The auto-immune disease that I call my own, Hashimoto’s Thyroiditis,  has its own set of innate problems, cells attacking cells. She has more physical pain and I wish I could take some away from her.

When we started talking, we were both subdued. We discussed our achy, ouchy  (I know that’s not a real word but it fits) symptoms. We were tired, tired of being tired, tired of being lethargic and uncomfortable. We talked about our day (some would consider this complaining but in our world it really isn’t). We were merely reporting and commenting on “the symptoms of the day” (you’ve heard undoubtedly about the ” soup of the day” well, this is different) and sleep deprivation, medications and diagnoses. We sound like we are pharmaceutical “reps” weighing in on different medications (we just don’t get paid for it and no free samples).

I got so frustrated at one point that I decided we were in desperate need of a new direction for our conversation. We decided on fantasies. (No, not that kind, get your minds out of the gutter!). We fantasized about a huge beach house (for me) and a very small one for her (so that when she cleaned it, it would be manageable. ) In MY fantasy, I don’t CLEAN my house, I just live luxuriously in it. I wanted neighbors, she did not; I kid her about being anti-social, she kids me back.

P. asked me questions about my ex-guru doctor and I updated her that the ex-guru doctor was still the guru doctor and I loved him (gee, had I not?) again, still, anew.  We’re a fickle bunch, we are.  She told me about natural remedies and I grumbled about how expensive they were and that I could barely leave the house to get the mail, much less drive to a costly massage or have a homeopath give me their remedies. (I’m sorry but I still have somewhat of a problem with the word” remedies”). We encouraged each other to plow forward, and she reminded me that “at least I had had one good day” which I was beginning to lose sight of in my quest for another.

We ended up laughing on both sides of two computers when I mentioned that perhaps we could have a “reality” show of all of us in the chronic pain/auto-immune/fibromyalgia/ CFIDS  and “other”categories.   I guess you had to be there but we took it so far that she was going to pitch my idea to producers. We LOL’d and ROFL’d so much that I had to help her up (virtually) from her  chair at home.  It was silly, it was ridiculous but it  felt so good to laugh and smile. In our world of chronic pain/illness  it’s an actual honor to be able to make one another laugh or put a smile on someone’s face.

I have been helped by so many kind people on this blog. But, I am the worst technical person in the world. It’s a wonder that I can even manage this simple blog (you’ll notice the elementary style with no photos or fancy techniques-sorry). If I were more technical, I too, would cut and paste and give awards (that are so special to me) to all my dear friends on this network (you know who you are!).

In my own way, I just wanted to tell everyone how thankful I am for the support, the humor, the  advice and encouragement and the friendships that have been made. We may have different symptoms but we have a common bond.   We take comfort in each other because only we can truly relate to one another. Doctors may sometimes not hear us, loved ones may not always understand us and we may feel a little crazy at times but, it’s our glue, our bond, that keeps us together.

Dedicated to all my blogger friends and to my friend P.

The Sick Mother

I hate the thought of my children having a mother that is chronically “sick.” I know, we all know, that it is NOT life-threatening but for day-to-day life, my illnesses have brought me nothing but pain, both physical and emotional. I was healthy and fine in all but the last three years but I am not sure if my children, now 15 and 17, remember that. They know what is happening now and they know what they remember from the recent past. It breaks my heart, literally, to have them be the one whose “mom is always sleeping” or “not feeling good.”

They joke sometimes about the things my husband has had to take over that I originated. To me, this is not a joke but it is heartbreaking. What about the years from 1-13 when I  did everything for them? It makes me want to cry. Now they know their Dad makes them lunches at night and greets them in the early morning. Even my “Mommy’s Famous Cheese Sauce” became “Daddy’s Cheese Sauce.”  It is NOT a joke for me, nor will it ever be, I find no humor in my own personal failings.

I want to be the mother that is there for them for everything. I was so greatly looking forward to college visits with my son and daughter and now don’t know if I can make it. We are supposed to go to relatives for Passover and I do not know if my body can physically take the 6 plus car drive down there. I do not know how to prioritize MY health for the emotional well-being of my children. They come first, always and forever. They need to know that NOTHING to me is as important as they are.

Will my absences be excused? There are only so many times that children can forgive and understand reason; at some point we are all children wanting our mothers to be there for us, no matter what. For every mother is a daughter that wants her mom to be there for her without excuses, physical or emotional.

For a woman who wanted nothing more than to be a good wife and mother, I find myself incredibly disappointed in myself. I am trying not to blame myself for my physical illness but I do. I understand that there are much worse things in life, and I am fortunate not to have to deal with them. But for me, my children’s lives come first and if I am not there at full capacity to guide them, to drive them, to go with them, than I feel that I am somehow disappointing them.

I want to be the one to drive my daughter to Payless for new ballet flats. I want to sit by my son’s side as we visit the first potential college he may want to see.  I do not want to be TOLD about these things later, I want to be there in the present.

What to do? There is nothing I can do but feel bad, for them, for my husband and for me; a woman whose only goal in life was to be a good wife, a good mother, not a sick one.

DEDICATED TO TIM AND JILLIAN