Wildflowers Dancing

Image by slight clutter via Flickr

The sun is shining, I have my ready-for-Spring green jacket on and I am gathering my blessings like a girl in a field of wild flowers: purple, pink, apricot and blue arranging them in a wicker basket. Today, my heart feels light, my steps seem smooth like I was on an invisible ice-skating rink and my elbows, fingers, knees are relatively pain-free. This is a gift from Spring, at least for the day and my body rejoices. Will I pay for this feeling tomorrow? Probably, but right now I don’t care.

I raise my face to the sun and delightedly close my green eyes. My hair hangs around my shoulders loosely. There, right there, the first hint of Spring in the suburbs. My nose gets kissed by the morning air, the 70 degree temperature makes me wrap my arms around myself and I eat golden honey on toast with butter and slices of a green, tart, Granny Smith apple.

I am not in pain always, I just write about it when I am. This is my apology to those who think I have NO good days or at least some better days. I am here today and I am enjoying life. A purple crocus is peeking from the earth, my beautiful, shiny nine-year old dog is ecstatic to be on a leash and outside for a leisurely stroll. I am as excited for her as I am for myself.

The snow returns tomorrow and the day after but that happens every year as March comes to an end and the pranks of April Fool’s Day come early. The one day of warm springtime teases us like a devilish child that loves to taunt and run away to safety. We have all known and loved that twinkling, mischievous youth. We know that there will be a few more days of snow and many more of rain and gray puddles. But, since we have tasted Spring on our lips, like the first soft-serve vanilla Carvel ice cream cone of the season, we know that it will come back to us soon. It will be even warmer, and lush, with green velvet grass sprouting and windows wide open to chase away the miserable coldness and stuffiness.  Once we have sniffed  the Spring, we embrace it, when it returns, like a lost puppy. Laughing now, we drink iced tea and grin widely as we look at a bowl of lush lemons gleaming in a simple, blue glass bowl.

Sadly, The Biggest Fibromyalgia Fog Ever (And Food)

Image by ЯAFIK ♋ BERLIN via Flickr

A few weeks ago on a Saturday morning, my husband woke us up from a deep sleep at 7:45 am, which on the weekends is basically the middle of the night. We went to meet his parents for brunch “in the middle” of our two houses in two different States. What I thought would be a one hour drive ended up being two hours for us. Two long hours, coiled like a bright pink hair scrunchy  in the front seat of a very small car. I didn’t move around in my seat, didn’t ask to stop the car so I could stretch, I just sat there like a block of white marble. Why? What was I thinking? Apparently, I was NOT thinking.

During the trip there I totally forgot that I had Fibromyalgia. How could I forget that I had a chronic illness? I really don’t know but that is exactly what happened. It didn’t occur to me until I felt locked in place and could not get out of the car. I couldn’t turn, I couldn’t extend my legs out, I couldn’t move and finally, the long, first step from the car to the pavement was pure agony.  It was the greatest Fibromyalgia Fog of all:  Blissfully forgeting I had Fibromyalgia…until we got there.  Had I remembered the illness I would have stopped every half hour to get out of the car, stand up and stretch. I should have been prepared, physically and mentally but I wasn’t. I just wanted to arrive at our destination. When we got there every inch of my body hurt like thousands of razor blades performing a pain symphony.

We walked up a long winding, flight of stairs, my new arch-enemy, to get to the restaurant we were going to for the brunch buffet. I looked up the winding staircase and had no idea how I would be able to get up. Being stubborn and independent I clutched the banister with the strength I had left, my stiff legs and knees protesting at every step; I walked like a small child, one step with both feet at a time. I realized anew that Fibromyalgia is a horrible, debilitating disease and forgetting about it entirely was a terrible burden for my body and my feelings; I felt stupid and embarrassed. “Loser” I muttered to myself.

Finally upstairs we were treated to a lovely meal. The brunch was a buffet, a man played the piano, my teenagers were well-behaved, there were mimosas available and it looked festive. We feasted on made-to-order omeletes, mine with mushrooms and cheese. On display were cinnamon buns with drizzled, sweet vanilla icing. They served eggs benedict. an array of cheeses and fresh vegetables and Belgium waffles with a vat of whipped cream and another close by filled with bright red, plump strawberries. They had croissants and rolls and blueberry muffin tops coated with brown sugar. They had serving stations of steak with horseradish mayonnaise and grilled sirloin, all too carnivorous for me so early in the day. There were smoked salmon platters and my personal favorite, a lovely poached pear, the color of burgandy, with brie and walnuts.

Once we were finished I dreaded walking down my nemisis, the evil staircase. I had to take a deep breath with every painful inch that I could move. Each step sent electric shocks down my legs, my hands were red and swollen, as if arthritis had landed in my body unannounced. I stayed behind the family this time and managed with one hand to clutch the banister down and with the assistance of my husband holding on to my other arm. I felt like a 95 year old grandma and while I appreciated my husband’s help, I loathe that I need it. I don’t like feeling dependent, at all. The food cheered me up, it was lovely and presented gorgeously. I tried to remember that and not getting there or going home. Next time, please, someone remind me so I can avoid a Fibro Fog as stupid as this one.

Just a Little Harmless Venting

Winter, Bloody Winter

It’s freezing, my hands hurt, they are red and raw. Soothing hand lotion just disappears into my aching pores but I can’t feel any difference or relief. Each finger is an individual icicle, stuffed into useless lined gloves. I can’t feel my toes they seem to have become webbed together because of this unnatural cold spell. I have four layers of clothing on underneath an old brown, tired winter jacket. I would actually prefer an old-fashioned snowstorm to these chilling, painful, low temperatures and hollering winds. With snow, trees, bushes and houses take on a life of their own. Everything looks innocent and bright. Pointy roofs are layered with glistening snow. Dogs happily romp in the snow, they run like deer performing ballet. It’s beautiful to watch; there is no beauty now. I can almost hear the roar of an impromptu snowball fight and the sound of children laughing. When I first go outside the wind hits my face like an unexpected, violent slap. The days are short, gray and abysmal. I shiver constantly; I hate feeling cold; my aging body agrees. Having Fibromyalgia makes the cold even worse. It’s colder than cold, my joints are stiff and I ache everywhere. Every move is accompanied by extra pain; life feels dreary. My body misses much-needed heat and my soul is deprived of sunshine.

The Headache That Slammed My World

I sit in my bedroom, lights dimmed, having just swallowed two Bufferin. I have an aching head and while once the cicadas outside brought me a lively colorful concert, they now are taunting me with their continuous and annoying chirping. I have read many of the blogs on chronic pain, I have also written about chronic pain but I feel I am not worthy of that group, not really. Their pain is so much worse than mine, I think. I have an auto-immune disease (Hashimoto’s Thyroiditis) and some say Fibromyalgia too. I have inflamed joints that are stiff and betray me, my right hand seems to be curled all the time, even in sleep. It is painful to unfurl them, one at a time, like the hand of a grotesque witch, and me.

I am slower and stiffer than I used to be. Getting in and out of cars, (beds, chairs, everything) fills me with pain and stiffness; I feel old and weary. I can live with that, many of my friends on-line suffer so much more.  What I AM missing is energy. Everything in my body hurts, or my infamous line to describe to doctors and friends “it’s like having the flu without the fever.”

I see a rheumatologist and am now on my third medication for my auto-immune disease. The first one worked well but ended up giving me a non-stop cough and I was hospitalized for epiglottitis; (think raw throat pain times a million) steak knife through open wounds, the worst pain I have ever had.  The second medicine, worked great for my energy but the side effects were so bad, (intestinal in nature) that I could not leave my house for 8 weeks.

Now, I am on the third (and last) medicine, I don’t want to try another one. This is the last chance before I just let my body become chemical free and deal with what I have been dealt with. I don’t have the money for holistic remedies, massage, etc. I barely have enough money to cover doctor appointments at fifty dollars a pop. The rheumatologist doesn’t accept any insurance so I have no choice but to pay him the big, HUGE bucks; I don’t go often. I was all set to go to a holistic place that would try to treat my condition(s) naturally until I found out that the cost was seven thousand dollars. Again, seven thousand dollars and this did not include follow-up visits or medicine.

My eyes are lowered, the sound of the cicada’s have lessened.   The pounding in my head is less severe, but now there are dogs barking loudly across the stream. I thought the cicadas were bad, they were an opera compared to these angry, fighting, nasty dogs. Time passes, I play low soothing music, I drink water and I don’t know if the medicine helped or if the darkness provides a cover, a safety net for all. Hopefully soon, I will sleep.

Pain, Feels Like Old Times

This morning, I tried to get out of bed, tried being the operative word. I felt like I did when my Fibromyalgia was in full bloom. Not that it is in any way anecdotal to flowers, delicacy or beauty. I feel like old times. The hard part is that I don’t know if this is a flare-up, even though I am still taking my medications. The only one I haven’t been taking recently is the Estrogel, a gel that you put on your arms used for Hormone Replacement Therapy. Could that be a cause for what I am feeling?

When you hurt all over, and struggle to get up the stairs,  when you don’t know where the pain and aches are coming from you feel even more at a loss.  I went away for a few days over the holidays, we took a plane, could it be a bug that I caught from the plane? It’s so hard to diagnose yourself when you have a multitude of factors. I feel like I have the flu again, without the temperature. Exactly the same as when I had Fibromyalgia which my autoimmunologist says is “a lazy diagnosis. ” He is treating my auti-immune disease (Hashimoto’s Thyroiditis) with immuno-suppresant drugs, which, of course, have side effects too.

I am sitting or rather lying in my bed afraid to move a muscle. Every muscle and bone in my body is in pain right now and I haven’t felt this way in a long time. It gives me time to appreciate how well I was doing compared to this but I am now questioning what got me here? Sometimes, those of us with chronic pain, unfortunately, blame ourselves. That is where I stand right now. Motionless, covered by piles of blankets and feeling upset, both physically and psychologically. I blame myself for stopping the HRT when I did not hear back from my Dr.  I blame the weather, it’s nasty cold snap feels like it’s physical abuse, striking me all over my body. It could be something, It could be nothing; the reality is, I honestly don’t know.

Do I start reapplying the HRT gel when this could be a virus? I forgot how bad I felt before, and I am not happy to have a reminder.  Do I continue the HRT when inherently I am not comfortable taking bio -identical hormones? I don’t know what I have or what to do. I don’t want to take more and more medicine but frankly today I am a complete mess. When I took Advil I felt better, apparently it has worn off. I feel scared and vulnerable all over again, I want to hide under my pink fuzzy blankets. I want to lie still, as still as the night, to try and assess what I’m feeling and why. The truth of the matter is I may never know, and I feel incredibly helpless and alone.