The Map To Nowhere Fast

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I have a weird feeling of unrest and stress, slimy blue- green and flourescent orange winding its way around my brain is how I picture it, how I feel it. No soothing colors of white and yellow and beige. Fake colors, unnatural.  I frown more than I smile and as hard as I am trying to focus on the positive it’s not easy. There is so much going on in my life that it’s hard to focus. I don’t think it’s just me though, I think it’s a lot of people.  It’s a feeling, not a good one, somewhere between the roads of anxious and depressed, stopping at weary.

There are natural disasters all over the world and I am sure we all feel, not only heartbroken for other people, but scared. There is too much sinewy stuff whirling around and no happy place to settle. What happened to my “happy place” images? Why am I only seeing the rain battering the purple flowers instead of the blooming of the flowers alone.

There is tension inside my house, we are in “the sandwich generation” that I used to read about. It isn’t fun, it’s scary. The “baby boomers” who have restless teenagers and aging parents who are alone or ill or depressed. I am that “baby boomer” now except I have the added affliction of my own “chronic pain.” Fibromyalgia and Hashimoto’s Thyroiditis do not do me any favors, I walk along slowly, painfully, I stumble through different medications and expectations. Very low expectations.

I also have narrow-angled glaucoma which is a dangerous disease or as one unfriendly opthalmologist put it “you could go blind in an instant.” Quite a bedside manner, don’t you think? Needless to say, I stopped going to him. It’s funny that I barely write about this condition, maybe it’s pure, frigid fear. Maybe there is only so much pain I can handle. My brain and eyes get hammered, with laser shocks, every few months by a doctor that I once believed was very good. I don’t think so anymore. “In twenty years of practicing, I’ve never had a patient whose eyes kept closing up like yours do.”  Every time I go to the city he lasers my eyes again, because the hole he drilled into me has closed. He does this procedure either in his office or in the hospital with no pain relief; imagine barbed wire going through your eyes and brain, quickly, twenty or thirty times in a row. The eye drop he casually puts in gives me incredibly painful headaches (migraines?) I do know that the pain I feel is barbaric, no pain medications, no anesthesia, no break. Over and over again; fast and furious.

The gray, dreary day does not help me since I feel overwrought and unfocused. I am dealing with both chronic pain, (Fibromyalgia, Hashimoto’s Thyroiditis) and new back pain that feels like my back bent and broke itself during sleep like a twisted pretzel you find in any mall. I am trying to accept my life for what it is, both bad and good, often simultaneously. Change is in the air like a dog-sniffing a new scent, it’s just hard to predict when and where things will happen.

I read an article in the NY Times today about a young couple with a young daughter. Each parent has cancer. That, is a problem I say to myself, not the dreary workings of an often too-emotional, anxious and pain- filled mind. I am so sorry Nathan and Elisa. You and your baby have my prayers because perspective is the greatest gift of all. I will speak no more.

The Tin Man Known As Me

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.

What Is Not There

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I was thrilled to be going with my family and in-laws on a 5 day cruise to Bermuda, courtesy of my very generous in-laws. It brought back all sorts of memories that I hadn’t thought about for many, many years.  I remember that 12 years ago my parents treated my sister’s family and my family for a cruise to Bermuda. It was a family vacation complete with my parents, my sister’s family and us, and most importantly “the cousins.” Four little fresh faces, all shiny with excitement, a boy and a girl for both my sister and I: 5, 7, 8, and 10 who love and adore each other. After that trip, they would always be connected and they still are very much so today.

I have a photo that I cherish of my sister and I that shows our happy faces and wind-swept hair. Our brown hair blends together and although we look completely different, this photo just smiled “sisters” and love.

I remember 12 years ago we were all on deck as the boat pulled away from the dock.  There was yelling and whistling and waving, and total excitement; sometimes I wish life could have stopped at that joyous moment but we go on anyway as time wills us, forces us to do.

Twelve years later, my husband’s parents (who felt sorry for us) treated the four of us and them to a 5 day treasure of a vacation, again to Bermuda.  What a difference time makes and it passes so quickly you barely have a moment to stop and think. This time, when we pulled away from the dock, I went outside to look and cheer, and I couldn’t. I didn’t even think of this as a factor when I went outside but as soon as the boat started moving, I felt sad. It was so emotionally charged for me that it was surprising to me and so unsettling.  I couldn’t speak, couldn’t even cry, I just felt numb yet able to feel this horrible and powerful feeling of complete sadness. I went inside as fast as I could, not walking, not skipping but running as fast as my aching body let me. The skyline looked empty with the devastation of the twin towers. How could I enjoy the view when the twin towers were not there?   They were in the background of our first trip; there was nothing now.

It also reminded me in a painful way that my dad was not with us; he passed away 9 years ago but the pain felt fresh and raw  and stabbed me at different moments, like it did years ago. Time does not change that type of pain, it hides, it tries to fool you, but once someone dies that is special to you, life as you have known it, is gone forever.

It’s been a long year, of unemployment for my husband and the pain of Fibromyalgia and Hashimoto’s Thyroiditis for me. Add narrow angled glaucoma, TMJ, chronic pain, and a connected tissue disorder and other unresolved medical problems and that has been my life for the last, long, 4 years.

Back home now, we are enmeshed in back to school errands. Our son is a Senior in HS this year, our daughter is a Junior in HS. Next year there will be another change, that will be wonderful and heartbreaking and empowering and positive. Our son will leave for college, our daughter a year after. I am cherishing every moment that we spend together but I know that there will not be enough time for me. This vacation created new memories for the four of us, ordering room service, having dinner together every night, laughing. These are the memories I will cling to, in my heart, forever. Time goes by and I with it, looking forward, looking back, trying to ride the waves as they rise and fall, rise and fall.