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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Orange U Glad TO Meet Me?

Orange julius

Orange julius (Photo credit: Wikipedia)

Happy, Happy! Good News! Good News! Even if it is only television news, we take what we can get (with great enthusiasm.) Just today I heard that McDreamy: Derek Shepard and Meredith Gray both signed a new contract for two years on Gray’s Anatomy. This makes me so happy you have no idea. (I know I have no life, that is one thing I “know for sure.”That is from Oprah, originally from Maya Angelou… Oh, Oprah, I could have told you that ending your show to get bigger and “badder” was not a good idea but nope, you didn’t listen to me. What the heck, you have more money than G-d and you don’t have to work. Though I do think you’d feel uneasy, lost, hanging around in your work-out outfits and sneakers and drinking Orange Julius all day. Hope you don’t mind that I put that in because I have craved Orange Julius now for months and can’t seem to find one anywhere. In High School Orange Julius was the new thing. Maybe even Junior High School. G-d I am so OLD.

Speaking of Orange, I just read that the Netflix show (can I call it a show? A series? ) Orange Is The New Black has  finished taping Season 2. That series brought out the worst and best in me and I loved every minute of it. It was scary, edgy, I was freaking out, clutching pillows and sitting on the edge of my seat but could I stop watching it? Hell no. It was like a drug, an addict bingeing on episodes to “Orange Is The New Black ” one after the other.

Anyone out there willing to be in my support group? Frankly, I’m no hero, I’m the one sitting in bed, hand clasped over her mouth and eyes to avoid seeing things I didn’t want to see and weeks later wishing I could forget what I may or may not have seen.  There’s always an out.Plus, I am such a wimp I could only watch it during the day, never late at night. Otherwise, I would get no sleep AT ALL. That said, I can’t wait for Season 2.

Yep, that’s me.

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Fibromyalgia 2013 – UPDATE

#Fibro - Awareness Day

#Fibro – Awareness Day (Photo credit: sand625)

I’m being a bad patient. Yes, I’m confessing. I have a doctor’s appointment with a new rheumy (as us Fibro patients like to call them) a new rheumatologist in about a week and I think I am going to postpone it. Again. My old rheumatologist who I do indeed love, takes about three hours to get there and back, usually more, and this one is only twenty minutes away, I’m getting lazy. However, this is the height of flu season and I really do not want to expose myself to the “flu factory” that is my doctor’s office. It is not just one office, it’s two buildings of sick people for every specialty in the world. It’s a factory for any illness you can think of. In addition to having Fibromyalgia, I also have an auto-immune disease of the thyroid called Hashimoto’s Thyroiditis. Just glance at me and I will catch it.

This is a tough choice. Had I been feeling extremely poorly now with Fibro I would surely go for the appointment but the fact is I’m feeling pretty good. (I know, don’t jinx it) It’s the first time in many years that I am NOT complaining about aches, pains, moving or walking. SHUT UP! my friends will say but no, I cannot. Of course, I still have Fibro Fog to the extreme (really scary) and I am on enough medication to kill a horse but this last combination of drugs apparently is doing a little something-something. You guys understand…

Sure, I suffer from the tender points, but I don’t even count them, they are as natural to me as getting up in the middle of the night to pee. I accept it. And yes, I have all the other symptoms of Fibromyalgia: IBS, tingling, headaches, “yada yada yada*” but overall I feel better. I’m not asking for fabulous, I’m just satisfied with better. Better to a Fibromyalgia patient is like a miracle, BUT it is a miracle for however long it lasts. I think a lot of it has to do with my endorphins being raised quite a lot. Wish I could say it was from exercise but let’s not get too crazy here. It’s the result of medication, and no, not-self medication.

Right now, I’m just appreciating feeling a little different, in a positive way. I want my Fibro friends, and the newbie Fibrosmyalgia patients to know that it is, indeed possible. Don’t give up hope, maybe one day you will feel better too with the right combination of medicine. Keep fighting. I know there is no cure but you need to trust your doctor, or team of doctors and they need to believe in YOU.

For now, until it changes, I am happy, fine, content. Do I think it will stay like this? Probably not. Do I hope so, definitely: yes. But, as we all know with Fibro, we have absolutely no control over anything, which really is the hardest part of all.

Let’s wish each other a whole lot of luck.

If you have questions for me, especially those who are new to Fibromyalgia, feel free to ask, I’m happy to help.

*yada, yada, yada from Seinfeld

Where I Go for News

Channel Sunshine

 

I would assume that MOST people would take this as “the news” so the internet might be a choice, maybe breaking headlines during one of my yummy television shows like Grey’s Anatomy or Brothers and Sisters or Modern Family or even Parenthood or….I think I’ve said enough. When I have bad days from chronic pain from my Fibromyalgia and Auto-immune disease, I tend to watch a lot of television. I know. My bad. But, I will not watch “the news.”I will not watch any channel for the news unless it is absolutely necessary. Honestly, I get too overwhelmed, too stressed, too sad and mad and I am left feeling completely helpless and extremely anxious.

Bad personal news, however, should always be prefaced by a “Honey, I need to tell you something” or “I have some bad news” even “I think you should sit down.”This should only be done IN PERSON. It makes my brain prepare myself for something that I know will be unpleasant or upsetting, generally both. There doesn’t seem to be a lot of good news going around right now. Here are more television analogies: Oprah, to me was good news. Ellen, funny, warm news, Rosie, straight shooter and wonderfully pro-children, pro-democracy, pro-truth and yes, a little pro-nutty but that’s perfectly okay with me.

Many years ago I used to watch the news at night; not a chance anymore. I couldn’t fall asleep after hearing about all the tragedies and the deaths, murders and dismemberment that the newscasters would cheerfully declare. You always find out the bad news, it’s the good news that should be broadcast. Life is too short, we know the bad stuff, that spreads quickly. Good news? That, should be on it’s own special channel, MY channel, broadcast and celebrated everywhere, every day, even every hour throughout the country, throughout ALL countries in the world. Don’t you think it would make for a better day? I do.

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