UPDATE: Hashimoto’s Thyroiditis and Fibromyalgia, 2011

Various pills

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I look back at the wistful essays I wrote in the past about this disease combination that I have. What strikes me now is the hope and innocence that I had back then. I thought if I could be on just the RIGHT medication, my life would go back to “normal.” I know now that normal is just a word and a dream. I’ve had these illnesses  for over four years, with three different doctors and probably over 15 drugs in some combination or other.

I don’t know when I finally accepted emotionally that none of these drugs would make me feel so much better but it wasn’t that long ago. I’ve accepted that I have the limitations that I do: the muscle aches and pains, joint pain, constant leg pain (I don’t know WHAT that is from), the occasional bout with Irritable Bowel Syndrome, the fatigue, forgetfulness, weird sleep patterns and just about every other symptom that I could have at any given time. I’ve come to a point where even if I am not sure it is Fibro-related, I just assume it is.

Sometimes I need to clutch the banister going up and down the stairs, sometimes I don’t. There is NO pattern; it depends on the day, the hour, sometimes mere minutes. How can we be expected to remember all these changes that happen at any given time? I can’t remember what I had for dinner last night. I go into a room to find something and forget what I am looking for.

Somewhere along the line, I gave up and gave in to this mystery disease. There were times when I even questioned if I had the disease, although I know I do now. The stiffness in my back, and in my shoulders should have convinced me but I used to blame the  brown overstuffed pillow.  The feeling of helplessness is legendary yet the one good feeling is the support from other Fibromyalgia sufferers.

I am now on Savella, Plaquannel, and Tramadol but I am sure that it will change soon. Am I better than before? It’s hard to judge since this illness is so inconsistent. From one Rheumatologist appointment to the next things may feel different but on the pain scale, that I am beginning to despise, there’s never a lower number.  I don’t want the “big guns” of medication again, I have been there, done that, and landed in the hospital overnight. With permanent Fibro-Fog I can’t remember how I felt eight weeks ago; it all gets jumbled up in my mind.. Better? No. Worse? Not really. Pain? Absolutely. Stamina? None. Forgetfulness? Always. Our short-term memory has been stolen from us.

It’s not that I have given up (maybe it is) but I’ve accepted that this illness is not going anywhere anytime soon and most probably there will never be a cure. The feminist in me thinks that if this was happening predominantly to men, there would be more research, more sympathy and certainly, more recognition and credibility.

I go on college tours with my daughter and son and I sit through the information sessions but when they go on the tour, I find a chair and sit alone for ninety minutes. I could barely get to the information session because we had to walk five blocks but going on the tour is absolutely impossible. Only people with Fibromyalgia  know how this feels. Any other physical handicap gives you sympathy and an unspoken pass but this chronic disease is invisible. I feel bad, guilty,  and think I am a disappointment to my children and my husband. This is real life and as much as I know I can’t help it, there is still part of me that is crying inside, alone.

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Daffodils, Pink Polish and Methotrexate

March 8, 2010 was the first day that I did not wear my heavy, dirty, dark brown Northface jacket in many, many months. After the horrendous winter we had( 21 inches of snow for just one of the many storms) I was happy to shove my jacket deep into the closet and not look at it again until next winter. I know there is no guarantee that we will not have another snow storm or frozen temperatures but I refuse to bring out that jacket again even if I wear 7 layers of clothing instead. That ugly old jacket represents winter (actually the last 4 winters) , and feeling cold, tired and old, armed with mittens and scarves and boots and being afraid (really, being very afraid) of the slick ice and the black ice and the ice- ice. The forecast said it would be in the mid- 50’s and sunny and I had every intention of taking advantage of the reprieve. It smelled and tasted like the very first hint of Spring. You could see the pre-blush on the trees, the buds not yet out but inching forward, little by little.

It definitely was a day for doing errands outside, smiling; no mittens, no coats, no hats; no need. It was a- happy-to-be-alive-day, that first recognition that spring really, truly, may indeed happen sometime soon. It was the day to go to the nail salon for a special treat and have them put pink polish on my pretty seashell toe nails. The person next to me was having BLACK polish put on her nails, both hands and feet.  Maybe next year at the start of winter, I will do that in PROTEST  but certainly not at the END of winter.   It was fun to sit with other moms and talk, chatting about colleges for our teenagers, harmless gossip in the neighborhood, new restaurant reviews. It was a day to breathe and laugh and enjoy this special day, that came, unexpectedly, like the purple, yellow, blue crocuses that force themselves out from the solid, rock-hard ground.

Even though the weather was perfect, my medical condition was not.  I had quite a bit of  trouble getting in and out of the car;  my body hurt, but my soul was smiling.  When there is a perfect baby- blue sky, 56 degrees and a sunny day, all your aches and pains feel just a tiny bit better. They don’t hurt less, they just feel less awful. It’s a state of mind. The medicine that I have to take every day for the rest of my life, (Synthroid, Methotrexate, Plaquannel etc.) will not change, but these rare effervescent days brighten my mood.

It was not  a day for hearty home-made thick pea soup with smoked ham but rather, a piece of French bread, some Gouda cheese, and glistening, seedless black grapes.  It was wearing a soft, gray, cotton T-shirt to bed, the windows open, pillows plumped, drifting off to sleep, clutching my  pink fuzzy blanket in one curled hand, still smiling.

Dedicated to Dr. GS: Thank you making me feel better and helping me to smile again.

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.

Fibromyalgia and Hashimoto’s Thyroiditis #3

My mother wants me to go to another specialist; she doesn’t know what KIND of specialist.  She also thinks I should go to the Mayo Clinic. I don’t know why. What I do know is that I think SHE cannot accept a few limitations that I have even though I can. She says I am too young to feel this way, I am 53. Not 23.  I’m okay with the way I am but she isn’t. I think it’s a mother’s love that prevents her from accepting that I am less than perfect. I, too, would want my child too to be in optimal health but what I have is NOT LIFE-THREATENING and I am grateful for what I do have.

Before the start of my medical cocktails (Synthroid, Cymbalta, Plaquananel, Methotrexate  (and Lecouvirin Calcium to combat the side effects which by the way does NOT work at all) and mega doses of Vitamin D I could barely move, every part of my body ached and I couldn’t get out of my bed.

I still ache, my joints are stiff and I do get tired easily. I’m ok with that. My Guru Dr. said that I would never be a ten out of ten, but he wanted me at an eight or a nine. The best I can do, so far, is a 6. I can live with that. The Guru Dr. wants me to inject a number of drugs (Methotrexate, Enbrel) and I don’t want to. Just reading the side effects of Enbrel makes me nervous; it’s one serious, heavy-duty drug.

I honestly don’t know if I should take the chance and deal with the higher dosage of Methotrexate (self-injected) not to mention even contemplate for a minute the ever so scary sounding Enbrel. I will see my Guru Dr. sometime in March and I will do nothing different until then. Except, I am allowing my mom to come with us to my next appointment so she can hear from the Guru Dr. himself that where I am, is not a terribly bad place to be at all.

I think it all boils down to attitude.