A Whisper Of Hope

English: A photo of a cup of coffee. Esperanto...

English: A photo of a cup of coffee. Esperanto: Taso de kafo. Français : Photo d’une tasse de caffé Español: Taza de café (Photo credit: Wikipedia)

After the longest Winter I have ever been through, today was like an unexpected present. I woke up to the smell of hot, strong coffee and a sky of blue. The temperatures were in the high 50′s and for those of us in the North East, it felt like we were at the beach.

It didn’t even matter that the temperature was supposed to drop dramatically tomorrow, I didn’t even care. Because what we were given was a look into the future, our bedraggled souls were given a treat, a tiny word that packs a punch: HOPE.

I was able to go out and walk by myself in town, stop by a shop and wave to a friend, I noticed things that I haven’t seen, having been locked up in my bedroom for months.  A young woman with very curly hair smiled at me and I smiled back, I held the door for a very appreciative young mom with twins, she smiled her thanks, I nodded and smiled back.

In one way, having children 21 months apart seems like a lifetime ago, now they are 19 and 21. I remember back to my double stroller, heavy, blue and white where my son and daughter sat and I pushed and pushed around the corner, meeting a good friend and her daughter.

Life goes by so quickly, even for my kids, they tell me, but sometimes the days are so long.

I came home today from a lovely dinner with my husband from a text message from my best friend, saying her uterine biopsy results were negative. I stood still, I was absolutely paralyzed with joy. And, I did what I usually do, whether I am sad or happy, I cried and thanked the Powers that Be.

I left a message for my friend, I’m not sure she will understand the words but she will get the emotion, my tears well up even now when I think about it. She’s been through too much already.

Spring is around the corner, I saw a red robin today and my husband bought me red tulips that we can plant once the ground is not frozen anymore.

Thank you for this day, for waking up to a sky of blue to finding an apple scone to eat with tomorrow’s coffee, for all my blood work out of my hands and the time in-between.

For a rare glimpse of what Springs looks like if we are patient.

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National Invisible Illness Week: September 9 – 15th

Fibromyalgia Eye

Fibromyalgia Eye (Photo credit: Vinally2010)

Who am I?  Can you see me ? Over here. The woman with the curly brown hair, green eyes, the one sitting down on the bench inside Target or the supermarket. No, I’m not lazy, I’m tired. Did I sleep well? No, but I don’t usually sleep well even though I have medication for that. Do I feel rested when I wake up, eager to take on the world. Well, no but I am older. How old? I’ll be 57 in two weeks. Well, it might not sound old to you, to me it’s ancient.

I have a childhood friend who claims she has Fibromyalglia  but refuses to see a rheumatologist. What? Yes, she sees a general doctor, one who knows about endocrinology for her thyroid.Do YOU see the point? Right, me either.  I have tried so hard to help her feel better but I’ve stopped, she obviously doesn’t want to feel better, she wants to complain.I grew up with her, no other bond, my mother remembers she’s been complaining since she was five, I remember it too.

I had to go to neurologist after I suddenly fell, on my back and test after test came out perfectly normal except for one: I had no balance. He had me walk a straight line in his office as if he was a police officer and I was a drunken driver. I zig -zagged on that line as if I had an overdose of margaritas and tequila sunrises and amaretto sours, mixed together in a huge bathtub big enough to fill a college party.

“Hmm” he said, “you have no balance” I nodded my head, up and down, ‘yes, I said, I know’ but he shrugged his shoulders and sent me away and said “I was fine.” If I was fine, why didn’t I have any balance? “Oh, it’s probably your Fibromyalgia…”he said. I’ve found now that when doctors don’t know what you have and they know you have Fibromyalgia that’s the answer they give. Nobody wants to take the time to figure it out, they don’t care, half of them don’t believe in the diagnosis anyway; since we don’t have many answers let’s all lump the various symptoms together toss them into a bag and label them Fibromyalgia. That’s easy.

What’s not easy is not having a cure and there really no potential in site. I happen to have a wonderful rheumatologist in the city and he is not only incredibly knowledgeable, he also really cares and that is an amazing combination and very hard to find. I don’t have as much pain as others but I have no energy. I can do one or two errands depending on the day and I never know in advance. It’s hard to make plans. Close friends understand, others don’t, want to know who your true friends are? Oh, it’s not hard at all.

I have a handicapped parking sticker for my county, you should see the dirty looks I get sometimes when I try to get out of the car. People judge on no information, they don’t ask, they immediately judge. They don’t notice the pain in my eyes from sitting in my car trying to stand up? No. So they notice the pain in the back of my eyes so I don’t cry out?  I don’t look “sick” is that it? That’s what I thought.Do not judge me or my handicapped sticker, I don’t judge you.

There it is, I don’t look sick therefore I must not be sick? Wrong. If my legs were in casts or my arms and shoulders too perhaps you would understand, but just because my pain is in the inside doesn’t mean I’m not sick. Sometimes, I wish I could show you my pain, physically. because emotionally, you’ve already done your very best to make me feel like worse than I already do. Maybe you could stick my whole body in plaster, maybe then you would understand.

Daylight Saving Time

Turn Daylight Saving Time Into SUNSHINE

Sunshine

I hate it. It’s not good for my brain or my bones. I think we need more sunshine and more warmth all through the year. Granted, I live in part of the country that gets snow often, and dreary weather and I resent it. I want to move someplace warm and perhaps winter on a beach in the Northeast. I want to be a classic “snowbird” and be proud of it. The freezing cold temperatures makes it difficult for me to move with my diagnosis of Fibromyalgia where every muscle and joint pain ache miserably. My mood is happier when there is sunshine, my bones are happier when there is warmth. What’s not to like?

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I Will Pay For This (But I Don’t Care)

A poster with twelve species of flowers or clu...

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This afternoon was a day that gave birds reason to fly and sing. The budding trees are smiling with green flowers, the sky is light blue with puffy cotton-candy clouds. I wanted to do something that I haven’t done for so long because the pain I have from Fibromyalgia stops me. Today I wouldn’t let it; I refused. I went to the tiny patch of garden we have in the front lawn and replanted a pot full of old flowers into the ground. Granted, I couldn’t kneel because I knew I would never be able to get up but I improvised. I admit digging the dirt with just a little hand shovel was too hard but I gave it my best try. After that I hauled my eighteen year old son out, who cursed the entire time, to dig deeper for me. He doesn’t get gardening, doesn’t understand the point of it but he doesn’t have to; he just needs to help me when I ask. I also bought a little plant  at the grocery store today that looks like a round puffy white ball with red and white edges. I planted this little sweet flower by myself.  I pointed out a worm to my son, forgetting he’s 18 and not 7, and that amused me but not him.

After that I went into our shed and got out bird food for the cardinals. I have wanted to do that, literally, for years. Today, with the weather encouraging me, I did it. I felt bad in the winter when I couldn’t go in the backyard for fear of slipping in a foot of snow and ice but I knew the birds would forgive me. There are black sunflower seeds now in the lopsided bird feeder and some on the grass and the table because I don’t mind feeding squirrels either.

Doing these things made me feel alive even if now I am so stiff and achy I can barely move.  My back already hurts on my right side and my trusty old heating pad is in its proper place. I know I wasn’t standing or  bending the right way; but it doesn’t matter. This was good for my spirit: earth, grass, flowers, birds, sun and the wild wind bouncing off the houses and trees and through my shiny brown hair. Today, I felt normal, human,  real and I felt happy.

I had forgotten how much I like to put my hands in the earth, smell the musky scent, feel the softness of the dirt intertwined with harsh roots. The earth didn’t mind that my fingers were swollen and even my joint pain got swallowed up in the beauty of the sun-kissed daffodils. I will not complain tomorrow even if I am twisted into a painful pretzel. Today, I needed to do this, I needed to feel like I was part of the world. I wanted to feed the chirpy bright red cardinals that wake me up in the morning and even the fuzzy, fat squirrels that my dog wishes she could play with.  I wanted to replant something that was old and try putting something new and dainty in the ground. I brought out my empty plastic jug of pomegranate lemonade, filled it with fresh water and tended to my two plants. My knees are stiff and I had trouble walking down the stairs to get to the kitchen tonight holding on to the banister with every ounce of strength that I had left. Today, I learned, that maybe more pain is worth it if it means feeding your own soul.

Wildflowers Dancing

Texas Wildflowers [saturated]

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.

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.

The Beauty Of My Fibromyalgia

Red berries

Image by freefotouk via Flickr

My husband came home from town and told me that he heard an update about a mutual friend; that she was at the end of her life.  She has ALS, (formerly called Lou Gehrig’s disease) a horrible, disease that affects thousands of people every year. I felt terrible for her and her family and know how hard that disease is for everybody.  I pictured her in her wheelchair with her beautifully spun white hair coiled behind her in an old-fashioned bun, the bun that my grandmother in her nineties used to wear every day; held together with old-fashioned black bobby pins. There was one difference, the woman in this story is not in her nineties, not even close, she is 43.

I have Fibromyalgia and Hashimoto’s Thyroiditis and before you write me letters about how pain is all equal and that pain is pain and we have our right to our pain I will tell you this: the stripping of your body, one by one and of all your faculties, is something I would not trade for and neither would you. The last vestige of communication this woman, this YOUNG woman had been struggling was to try to write something with her twisted hand on a computer generated machine. Fibromyalgia pain IS pain. I know I have pain, I understand it and I can communicate it, I can’t solve it. When there is nothing that helps me feel better, at least I can verbalize this, at least I can try to focus on a pretty picture of strong red berries on a simple branch. When I clutch the banister to be able to go up and down stairs, I am mostly doing it myself. If I can’t and need a hand, I will ask for it and accept it and will be able to have the dignity to say “Thank You.” I can ask my daughter about her day or my husband’s first day of work or my son’s admission to colleges. I am able to do that and am thankful for it.

My husband, the most patient man on earth, gets irritated and annoyed with me when he asks me questions about the type of pain I am in. He is direct, like a prosecutor: “is it muscular?” is it in your joints?”  “does it stab, burn, tingle, come in waves?”  “is it sharp, is it dull, does the pain move around?” I’ve always been vague in my answers about how I feel physically because I am the type of person who can’t verbalize my symptoms well. Fibromyalgia is defined as having pain all over and that is what I have. Is it muscular? Yes, Is it your joints? Yes, It is all over and hard to differentiate from one Doctor’s appointment to another, Yes. We also have Fibro Fog, our endearing term for forgetfulness, makes us forget how things were yesterday compared with today.

Fibromyalgia changes every day, sometimes every hour; there were times when I was sure I had a really bad virus but my Doctor just told me they are “flare-ups.” My mother was concerned because I was sick so often, I never knew I had flare-ups, I didn’t know what flare-ups were; no-one ever told me.

I am not saying that your pain or her pain or his pain is any less uncomfortable because it is not life threatening. Listen to me: I am saying that pain is pain, and that it can be unbearable and it does affect your emotions and social skills. But, at least it does not deprive me, me personally, of the ability to still connect with my loved ones and friends and I am able to communicate.

There is no competition. Pain is pain is pain. My friend who is dying from cancer is fighting every day as she has for five years before her breast cancer metastized into brain cancer. This is not a game where whose pain, whose life is worse. This is MY opinion, own it or reject as you please. I do have enough pain to consider myself suffering. I may not have control over my pain but at least I still have control of all my faculties.

We are all at risk for everything, like everyone else in the world. There is so much sadness: health, terrorism, wars, economy,  that sometimes I need to focus on just by breathing, in and out, in and out.  Sometimes I need to slap myself out of my self-pity and give thanks for the things I can do and more importantly send blessings to those who are less fortunate than I am. Now.

Forecast: Snow And Pain

Ground blizzard conditions in Ontario. HWY 26 ...

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I never wanted to be a weather forecaster but I have found if I listen to my body, I truly, can predict the weather. This is not a fun job for me; nor is it a fun job for any people who have Fibromyalgia or another chronic pain disease. There’s a blizzard going on in the Northeast and before I heard about it, I felt it. I felt it in my tired and achy bones and muscles. I couldn’t stand up from a seated position without a lot of pain. I needed to hold on to someone’s hand because I felt off-balance. Some experts say it’s related to the barometric pressure changing. My degree in weather forecasting is not that advanced.

My bones, muscles and body hurt enough as it is. Today, my back and shoulders  and legs are aching and cramping horribly. I am having trouble getting up, sitting down, walking (shuffling) while holding on to the railing in my house for the stairs, one step at a time. I also have the infamous Fibro (Fibromyalgia) Fog that causes me to lose my train of thought or forget something that someone just told me ten minutes ago. It’s bad enough that it’s painful but feeling embarrassed and humiliated is another blog post altogether. I do not understand this mystifying illness; that said, it is hard to expect others to understand it as well.

We’re in the middle of a snow, blizzard emergency now.  I am praying for the electricity and power to stay on so we have heat all night. I’m piling on the blankets, flashlight at my side, candle at the ready….just in case.  It may look pretty outside with snow drifts and the sheets of snow coming down sideways in the light of our windows but it doesn’t feel pretty. It feels horrible, it’s like clenching your teeth in every body part. My neck is stiff and constricted, my shoulders are tight, I feel like the Tin Man of the Wizard of Oz but there is no oil to relieve my pain. I hope for continued heat for all my friends but especially my Fibromyalgia friends because we really know what COLD feels like.

Stay warm my friends, we’ll all get through this together. Huddle under extra blankets and lie still. There will be hot coffee in the morning or English Breakfast Tea with milk and sugar. It’s just the beginning of winter; we have a very long way to go.

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.

A Warm Welcome For New Chronic Pain Members

Strelitzia reginae, also known as Bird of Para...

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Dear New Chronic Pain Member,

I won’t say “Congratulations” for being in this particular club, a club that we all wish we were not in. Life works in very strange ways. There are some things we can’t possibly understand and there are some things we just have to accept; chronic pain/illness falls into that category. Whatever you have gone through there’s a pretty good chance we’ve  all been there and back. At least, you have found the most supportive bunch of people I’ve ever known. Even though what we have in common isn’t exactly our love for food (well, that too) it’s nice to surround yourselves with people who truly understand. Trust me, it helps.

Yesterday I dragged my aching bones and stiff joints up the four stairs for a consultation with a different Rheumatologist/Fibromyalgia doctor, even four steps felt like a lot and the rail  on the wall  called my name; I let it. Unlike my old doctor this new human being seemed attentive and concerned, he didn’t smirk once, didn’t put me down at all. He even talked to me (and not to my husband which used to happen all of the time.) Most of all, this guy  seemed to care. He interrupted my exam to talk to a suffering patient and while I don’t think that’s good form, listening to his soothing voice and gentility made it alright with me. It made me feel that I could call him for questions or concerns, not just send him e-mails like the old dude.

For a patient with a chronic illness or multiple chronic illnesses, a good rapport with a doctor is imperative. Go to a doctor that will give you the gift of hope. I’ve been around the block a few times here, actually 4 years worth so please listen so if I can shield you from the mistakes I have made, please let me.

This is my story, while going through menopause at age 50, my body basically fell apart. I developed an underactive thyroid, aches and pains, high cholesterol and a kangaroo stomach pouch, as I’ve said before “without a joey.” After many mistrials with many doctors, four years later I am here.  My old rhuematologist used to growl and say “Fibromyalgia is a lazy diagnosis.” What was that supposed to mean? Did that mean I didn’t have it because I certainly felt like I did. Those of us who have chronic pain know it; we feel it, eat it, and breathe it. We live with it day by day, aching night by night. There is no question in our minds but a big question mark still for some doctors, the wrong doctors. If your Doctor does not nod his/her head appreciatively or with empathy, do me a favor, walk out.

Fibromyalgia get’s a bad reputation and while it cannot be cured hopefully it can be helped. I had at least 14 out of the 17 pressure points and I was still on a lot of medication. I like that this Dr. took me off things that he thought I didn’t need. NOTE to fellow sufferers: If you have Fibromyalgia or any chronic pain illness and high cholesterol like me, ask your Doctor about side effects from certain drugs. Four years into this I just learned (from my mother)  Zocor or generic Simvastatin causes muscle aches and fatigue. Ask your own physician or call my mom if you want.

I also have an auto-immune illness of my thyroid, called Hashimoto’s Thyroiditis. What this means is basically my thyroid cells attack each other and this illness too brings pain and fatigue as well. Also, something called connective tissue disorder as well as others:  TMJ, IBS, Interstial Cystitis, bouts of anxiety etc.

I have no illusions that I will be “cured.” There is NO cure for my illnesses.  I am thankful I have friends who understand how I feel. Fellow sufferers who know what it means when I have a flare up  when the humidity is high and I am like a limp, achey, dishrag, basically hung out to dry. I’ve found that people without the disease don’t know how to handle “us.”  “Get more exercise” says my mother. “Go to a nutritionist”says my sister.  They mean well, they just don’t get it and how could they? We live in a different world.

The image of myself that I used to have was of a helpless kitty, crying and lost. Now, it is a beautiful, graceful flower,  purple and orange and called a Bird of Paradise. It looks like a bird‘s open beak, colorful, strong with its head, firmly, bravely, looking up. I pray it lasts.