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.

My Fibromyalgia Vacation

Rhode Island Retreat 2983

Rhode Island Retreat 2983 (Photo credit: WebAdvantage.net)

I bet for a second you actually thought I got a vacation from Fibromyalgia and ALL my aches and pains. Oh, silly you, you know THAT’S not possible, that’s not even a thought that enters my sane mind anymore. Actually, it doesn’t even enter my insane mind. I’m stuck with this horrid disease, as I know so many of you are, and we are going nowhere, well, not fast. Fast is a past tense word. I don’t do anything quickly anymore, with the exception of napping and eating.

My husband and I went away for a couple of days, it was a short car ride that we broke down in two days. Yes, we stopped overnight so I wouldn’t have to sit in the car for four hours which, I thought, was extremely sweet and generous of my husband. After all, money is tight and in August we are sending two kids to college (state schools, thank goodness, but two in college at the same time.)

We arrived at our lovely Bed and Breakfast and it was the first time I noticed someone actively noticing me. The Inn Keeper was watching me, she stared at me, not unkindly, but with acknowledgment. I only had one computer bag in my hand and she said “let me take that for you, it’s easier for me.” This was not a woman who was much younger than me but when I saw her sprint up and down the stairs like a youthful kangaroo I realized how old and how sick I must look and seem. It was devastating to me and quite alarming.

I am used to my small circle of friends and family who are with me all the time and know about the chronic pain and illness. The stiffness in my bones, muscles, the nerve pain, the imbalance, the awkwardness of going up stairs (and these were deep and wide stairs.) My husband’s arm was always at the ready and I’m sure she noticed that too but I felt so conspicuous. I felt like I had a sign on my back that read: DAMAGED GOODS. Apparently, I did.

I have other tests coming up soon and if those are okay I know I will be thankful for just having Fibromyalgia and Hashimoto’s Thyroiditis (an auto-immune disease of the thyroid.)  I am not complaining about how I feel physically as much as the shock I felt when the inn-keeper looked at me, with equal parts of pity, kindness and sorrow. She was NOT trying to make me feel bad in any way, but bad is how I felt, I’m so used to feeling physically bad that I don’t know what physically good feels like anymore. Physically painful is my new normal. I felt emotional pain from a stranger for the very first time and that hurt.

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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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.

Buying Yodels For My Family Is A Big Fat Lie

Yodels

Image via Wikipedia

The year of tension and excitement and dread is upon us. We have a Junior in High School and  Senior in High School at the same time. I get mixed up when I write a check, is it for the PSAT? Senior dues?  Homecoming? Does my daughter have driver’s ed the same time she is babysitting twice a week or will that work out? Will my son and husband’s EMT class conflict with my son’s attention to applying for college? How will he get all his homework done? How will my daughter do all these things at the same time?

Our guidance counselor is on medical leave and I do feel bad for anyone who is sick. But, to my own chagrin when we heard the announcement my husband and I both thought: “What about our kids?” They are in their Junior and Senior year and they have no guidance counselor. It was totally selfish and somewhat unkind but it is reality.  I’m sure they will figure out things at the High School but becoming one of  “those parents” was totally disheartening and disturbing.  It wasn’t right, it wasn’t nice but it I admit it, it crossed our minds.

Tonight, we thought we had our son’s Senior essay all set (and since when do the parents have to do the work and write an essay?).  We wrote a beautiful, succinct paragraph that truly summed up his character and learning style. All was fine until I heard people wrote pages. Not one page but two or three, one parent wrote five. Granted, this is a bit much but I had the horrible feeling that we had done too little. So, after calling friends, taking polls and freaking out, I tried to expand his essay and elaborate so we will have at least another paragraph, two if they are small.

This added news sent me into a frenzy. I panicked, I stressed out and of course, I ate. I went straight to the kitchen where a lone pack of Yodels sat in their pretty white box with blue and orange trim. They were basically begging for me to eat them. What could I do?  I ripped that cellophane pack into shreds within two seconds, and ate them as I was climbing, with pain and soreness, upstairs to the bedroom. I literally stuffed them into my mouth. Sure, I ate them one at a time but I did not linger, I did not sit down leisurely and peel the chocolate, I just ate them.  I didn’t even ENJOY them. That, my friends is stressful eating. Next time I go grocery shopping, I cannot kid myself that buying the Yodels was an altruistic act for my children.

I can tell I am overwhelmed because my jaw has stiffened and my TMJ hurts. I am trying to relax but I can’t. There is so much going on now that I can’t even “breathe” myself down. If Yodels didn’t help, nothing will.  This is not good for my auto-immune disease or my fibromyalgia because I think the stress makes the symptoms worse. I am in pain and I am very tense and my body hurts in places it shouldn’t hurt. Even if I slow my body down, my mind (probably still from the aforementioned Prednisone) will not. I just can’t stay up much longer, I’m tired and need to sleep. For a person who never procrastinates I am thankful for one extra day. One last day to finish all the things left to do, retype the essay, clean the house, do laundry, go to pick up a prescription and most importantly, not eat Yodels.