These Days

January stinks...

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

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We Didn’t Ask For This (FIBROMYALGIA)

27/365: fractured reality/grace under pain

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.

People Called Me Lazy

free 'sweet' hugs

My Fibromyalgia was diagnosed four years ago along with an autoimmune (Hashimoto’s Thyroiditis) disease and a connective tissue disorder. They both were gifts I got after menopause. Thanks. I’d rather burst into tears a hundred times and change night shirts six times a night than have this. I’m sure I’ve had Fibromyalgia for a long time, I just didn’t know what it was.

I never had the same amount of energy that other people had and I always needed ten hours of sleep. I can’t function on less than eight but ten is ideal. Let’s not forget the nap too. I used to nap every day for three hours, every single day and I would head to bed at 9:3o pm each night. Every bone in my body hurt, I  thought I had the flu,  without the temperature  but it never went away. New pain pops up like the springs of an old mattress and I just sit there in utter disbelief.’ No,’ I would say to myself,’ it can’t be. Isn’t there enough pain and discomfort?’ Sigh. Apparently not.

This pain I have makes me feel like a hundred years old; my 83-year-old mother is in so much better shape than I am. She does yoga once a week, she swims every day,  she is out of her apartment all day, going to the city, socializing with friends. She literally runs around without stopping to rest or sit down or G-d forbid, nap.  In the beginning, before she understood, (does she really understand now?) she used to tell me that I needed more exercise which is a common thing for people with Fibromyalgia to be told, over and over again. Read My Lips, NO CAN DO. I can barely make it around the block twice with my friends. They continue for a third loop and I beg off, mostly I’m fine with it, a few times I have had a twinge of embarrassment even though there is no reason for me to feel that way.

You get unsolicited advice from many people, people who don’t have a chronic pain illness. Go holistic, just get massages, change your diet. They might as well say dye your hair, or drink raw eggs or spin like a top and throw up as a cleanse. We KNOW the choices that are out there, really, we do. But generally we look to other pain sufferers for the answers not you. We know you mean well but frankly, it doesn’t help us.   Often, we don’t know WHAT to do and we are the ones that are suffering.  I’m there now. I’m not only caught up in the cotton-headed Fibromyalgia Fog (where am I, what did I come up here for?) that is my life but I feel unsure and anxious about my options.  I don’t know what to do or who to turn to or who to trust.  My energy is better from the medication I am currently on but now I have new pain in my legs. Great, I can stay up all day having more energy but with more pain. Do I have more pain from the side effects of the medication or from Fibromyalgia or wait, it could be from my auto-immune disease or connective tissue disorder. Listen up, world, I can’t speak for other people, but I am often unsure and clueless, trying to live in this world, day by day. I’m the first one to admit that I have no clue if what I am doing is right. How can we know that? We go to top doctors and hope for the best, sometimes it just isn’t enough. Do we settle? Do we stretch? Do we give up on medications? Is six weeks enough time to know that a medicine is working? Who knows? We don’t have the answers either, believe me it’s our fervent wish to understand and solve these medical mysteries.

I have stopped scheduling things in advance because I don’t know how I will feel that day at that time. My good friends understand, they will say “let’s talk the morning of” and I really appreciate it. My friend Sarah will just say “let’s see how you feel” and her concern (and no advice) is for my health and I know she just wants me to feel good and be happy; I also know she worries about me. I appreciate everyone’s concern, truly, I just sometimes don’t know what to say. I wish I was healthier too and in less pain,  I wish I didn’t have new symptoms from time to time but I do. Please understand that I like it a whole lot less than you. I know you feel bad for me but be careful of your words, saying “just when I thought you had every symptom in the book, you get another one,” is really not helpful. I know what I am going through you don’t need to tell me. Just be there for me, listen, offer me gentle hugs and a shoulder to cry on, be supportive. Take it from me, that’s plenty and more than enough.

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.

Barely Treading Water With A Hint Of A Smile

May 30, 20010

I think I may just have to live an old life, actually a much older life at a slower pace, a gingerly walk and question mark for every day. I may need to stop all the medications I take for my auto immune disease, Hashimoto’s Thyroiditis,  and inflammatory disease and  just live with even less energy, more aches and pains and even more inflammation. It wouldn’t really matter, I don’t think, because with all the medicines I take now, I still feel those things. I feel those things every day along with nasty side effects from the prescribed medicines.  I am not drowning in the ocean, nor am I swimming powerfully, I am mostly trying to manage to keep my head above water. I am not depressed or suicidal, I am not happy or ecstatic, I am just living in a state of symptom to symptom, energy for an hour, napping, reading, napping and tired.

I don’t notice much improvement, if any, from the medications to begin with. Can I go from bad to worse? Possibly. Can I learn to adjust to that? Maybe. The lack of energy is probably the worst part, I can live with aches and pains and holding on to staircases to get up the stairs. But,  when a beautiful day presents itself to me as a present, like today,  I cannot live, not knowing what or if I can do anything at all. It’s not fair to me but mostly it is not fair to my husband and I feel bad about that.

It’s Sunday of Memorial Day weekend, the sun is shining, the sky is a pastel blue, the bountiful green oak tree leaves are swaying softly. Birds are serenading us with their sweet high-pitched songs.  My husband and I had no plans for the entire day and he was up to doing anything. Go to the city? Go to a park? How about a museum? He was willing to do whatever I wanted to do and having my now familiar stomach ache (side effect of the medication) and being tired, I chose a nap. There was no back and forth discussion of which place to go or what would be more fun because of me. The bar is set so low that staying home sometimes is my only option.

I don’ t know what to do, other than go on one more expensive tour of doctors again. I will do it, I will try, for the last time. After that, I don’t know. I don’t say that with depression or despair, it’s an option I need to consider. I live a sedentary life now, truly, if I have two hours during the day that I feel energized it’s a good day. Lately I haven’t even felt that. I’ve been stuck at home, happy just to be alive.

Do I think it’s fair? Not really but I don’t think it’s unfair either. People live with far worse things. I find it frustrating and disappointing that I have lived life like this for the last three years. I awaken, each morning, with a question mark, to see if I feel better, but it hasn’t happened yet and I don’t see it happening anytime soon.  Is it is better to deal with a new reality and no side effects than be stuck with the old one?  I have no idea. What am I going to do? I honestly don’t know. I need help, more doctors, different doctors. no doctors?  I am feeling a little overwhelmed and I think what I need the most right now is a positive attitude and plenty of of good luck.

Dedicated to my wonderful husband, Danny.

Good For You, Great For Me

Today is a HAPPY day for me; for most others they would call it “normal.” After a good, solid night’s sleep (waking up only once and then able to go back to sleep immediately), I woke up at 11AM and felt good. Good, as in the absence of, pain and aches. Not just good, but GOOD, almost great. I had enough energy to get out of the bed and go down the stairs.  Feeling good is taken for granted by a whole lot of people but NOT to those of us who have auto-immune diseases, fibromyalgia or ANY chronic illness for that matter. Good to us is great. Unfortunately for some of us, to experience it  is sometimes rare.

When I feel sick I don’t know if it’s a side effect of the methotrexate (and plaquannel) that I am taking, whether it is my illness (Hashimoto’s Thyroiditis and Fibromyalgia) OR a new virus or bug I picked up (probably at another Dr’s appointment.)  Last week I took, (yes, I asked my doctor’s permission)  gulp,  double the amount of methotrexate, 8 pills (bad idea, really bad idea) on one day instead of splitting the medication, 4 pills, twice a week.  I did get approval  from the doctor to try….but it was definitely a really bad experiment.  My fault. Entirely. I take full responsibility for it.  Big, bad, miserable mistake but I  thought it could turn out to my advantage (so not) and I wanted to try to feel good for a few days in between the two doses.  It backfired, I was sick for an entire, miserable, can’t-get-out-of-bed- week. Never will that happen again. Maybe the lessons I needed to learn from this are:  when I go back to taking the dose twice a week (starting Monday) it won’t feel AS bad as it was last week AND see how much sicker I could feel every day?

I took advantage of THE DAY (wish I could light this up with sparklers)  by doing “normal” things which to me were thrilling. I went to the Orthodontist with my kids (just being able to GO was a treat)   and then I took them out to eat at the local diner. First, having teenagers by themselves, outside the house, is a joy in itself. There was barely any fighting and a lot of sharing food and actual conversation. Anyone who has teenagers knows this is a rare gift. Besides my son taking illegal sips out of my daughter’s  strawberry smoothie and my daughter continually playing with the straw in her water-glass, it was calm and very enjoyable. My son ate his brunch, thinly layered pieces of a croissant, french toast style, with bacon in less than 4 minutes. My scrambled eggs and toast (why do they taste so much better when I am not cooking them??) and fruit served as the extra filling station for both the kids. It was fun to see them reach over and grab bites and an even greater joy just to be with them. Outside the house. Like a real person.  Most people would take this meal for granted. Not I.

Being on a roll on this celebratory day,  my husband and I plan to go to dinner at the Asian Fusion restaurant we used to go to.  We have not gone out anywhere for months so Carpe Diem (seize the day).  For me, a good day, like today, is a celebration. I can honestly say that I don’t know when I will feel this good again. I wish it was more frequent, I wish I could predict it  but I can’t and I have to accept that.

I hope people who don’t have any illnesses will read this to know how good they have it, that just having an ordinary day makes us feel so special. I may not feel like this for a few more weeks or months but it allows me to remember how it feels and that there is the promise of another day, somewhere…. in the future.

The Methotrexate Blues

Oh me, oh my.  My poor, poor stomach. I am feeling sorry for myself and I don’t care.   I take the drug, methotrexate,  twice a week for Hashimoto’s Thyroiditis, an auto immune disease. I hate it. A few hours after I take it (with food, without food,  after food, after a lot of food) my stomach feels like it’s going to explode, and generally, it does. I get cramps, feel horrible, and look worse. I look pasty, have NO energy and have to stay in bed. And I sleep. A lot.  Is it worth it?  I really do not know. That is what I am grappling with today as I lie under my covers feeling cold and weak and on your one to ten stupid scale, Dr. Guru, I am a 2, and that’s rounding up.

Yesterday was one of the best days I’ve had in about 18 months. I had energy, I had spirit, I had faith. I went to the grocery store and happily shopped for an hour and a half. I walked, I strolled, I tilted my head to face the warm rays of the sun. I was so happy. So I napped for a couple of hours in the afternoon, I was fine with that!

In the early evening, my husband Dan and I went to my sister’s house for a cozy  dinner with her and her husband. She made tacos, with chicken, cheese, yellow rice, crisp lettuce, red beans…..and we all laughed and chatted amiably and I shared a Diet Coke with her. We sound exactly the same and we usually interrupt or laugh at the same second.  She told me that I “looked really good” and I was absolutely delighted. I felt good, I felt happy and now I am paying a price. A huge, unfair price.

Went to bed at midnight last night and woke up at 12:00pm this afternoon.  Took four of  those horrible tiny yellow pills, the “M” medication and from then on  felt like_ _ _ _. (Fill in the word of your choice). I couldn’t make it out of bed, except to use the bathroom, and I had no energy; believe it or not, I needed a nap during the afternoon.

I’m resentful and disgusted and depressed. I went from such a wonderful day to a pathetic day. I AM thankful for the one wonderful day I had, believe me, but at what cost?  If there was a pattern I could adjust to it but there is none. I don’t have an instruction booklet for my own body and my body has a life of its own.  The only change that could possibly  made in the future is that I inject, yes, you heard correctly, inject the drug directly into my thigh. Hopefully,  this avoids the stomach complications but I haven’t gotten a definitive answer from the Dr. on that.  I’m cranky and frustrated and  the next time I see an orange it will probably be to teach me how to inject myself.  Swell.