"Life isn't long enough to do all you could accomplish. And what a privilege even to be alive. In spite of all the pollutions and horrors, how beautiful this world is.
Supposing you only saw the stars once every year. Think what you would think. The wonder of it!"--Tasha Tudor

Monday, December 10, 2012

Fibromyalgia, Oh How I Hate You

Warning: post contains serious whining and bitching 

I have been living with Fibromyalgia for something like 11 years now. Sometimes I can't believe it has been that long. Recently I had to sit and think about when I was first diagnosed. I'm terrible about remembering dates. Two events that stand out for me that help me to recall those first wicked days are going to see Harry Potter and the Sorcerer's Stone movie, which was the first of the eight films, and the terrible anthrax attacks of 2001. What a combination, right?  I remember the Harry Potter movie because I remember being in severe pain walking from the parking lot to the theater and not being able to get comfortable in my seat once there. I couldn't raise my arm high enough to pay for the popcorn and I remember the dull aches starting. I thought I had maybe pulled a few muscles or was getting the flu. The reason I recall the anthrax attacks was because I recall the doctor sending me immediately to Greenwich Hospital for a CAT scan after realizing that I had been using postage stamps that had a white powder (which turned out to be cornstarch to keep them from sticking) in the envelope. I had spent the days prior completely unable to stand or walk and in severe pain, so much so that I couldn't even get to the doctor's office, let alone turn the doorknob to open the office door. Yep, it was that bad. I remember when I was sent to the ER for the CAT scan, there were many employees who worked in Rockefeller Plaza in NYC who lived in the area and were sent there. I vaguely recall the area being sectioned off and being escorted in. And people dressed head to toe in safety garb that made me feel like ET just before his heart light went out. Rushing, panic, on their part. I was in too much pain to care. I also recall that after the scan and all of the people buzzing around me that a few moments later someone came in and said, 'not anthrax' and being just left there on the gurney as if I didn't matter any more. In hindsight, I guess they had a lot going on.

I was sent home and then the tests began that week. Finally my doctor brought me into his office and opened a medical book and asked me to read a couple of pages on Fibromyalgia, which he believed was the problem. Huh? I had never heard of it. From what I was reading it seemed like it was a diagnosis of exclusion "its not this, its not that," and there were some 'pressure points' that they used to confirm the diagnosis as well. I remember getting to a point in the information that said that until recently many doctors believed that because every conventional test they had would turn up normal, that they believed it was all in the patients head. I turned to him and said, 'so what, you think I'm crazy??'  He laughed and said 'Oh my God, no Cathy. I just want you to know what you are up against. The good news is that it wont kill you. The bad news is that there is no cure right now and the medication is pretty much all trial and error.'  He sent me to a couple of other doctors for more opinions, including a rheumatologist.  Diagnosis: Fibromyalgia. Three weeks after I started the medication, I was able to stand again. I remember being thrilled beyond belief and finally thinking there was hope and I could do this.

What I didn't realize it how much life as I knew it would change. I was the girl who would move entire rooms of furniture around by myself. I was the girl who worked three jobs plus volunteer jobs. I was the girl who would stay up till all hours of the night for weeks at a time to do crafts and artwork for weekend craft fairs. Suddenly I found myself in a body that held me hostage. As time went on I had to learn how to do everything at a much slower pace and learn to let others help me. I learned what I needed to do to get through the day and try to be as productive as possible. I had to prioritize, letting lots of things go that I no longer had the strength to do. I had to force myself to rest and nap during the day. I had to get over the embarrassment of feeling like everyone was staring at me or judging me or not understanding that you can look normal on the outside but be in pain and exhausted 24/7. There are days when I wake up and just can't move and I can't get out of bed and tears flow. Even my 'hair' hurts. LOL. I can't lie, it is that bad. But there are good days too. I never know really what each day will bring. But I remember the doc's first words to me that the good news is that 'it won't kill you.'  So if that which does not kill you makes you stronger, I guess that is the bright side to having Fibro. You learn to adjust and do what you can, when you can. You learn to prioritize. You learn to let go and accept help. You learn that it is really OK to use that handicap parking sticker when you need to. You learn to appreciate the good days, SO very much. I know so many people deal with so many illnesses and have it a lot worse. My mother told me that if we were all put into a room and everyone put their troubles in a big pile in the middle of the floor and were asked to pick a problem, we would all choose our own right back rather than someone else's.

These past couple of years the Fibro has been really kicking my ass. I know that depression goes hand in hand with it. Hell, who wouldn't be depressed being in pain and exhausted from the pain all the time? My brain tells me that if I am having a bad day that I need to not fight it, but rather rest and take care of myself and it is really OK to do that. I wish my brain would tell my heart that though. I do my best to show the world my happy face, but I do still cry, a lot, when I'm having a bad day. I want my old body back. I want my energy back. I want the pain to stop. I have had a lot going on this past year and it makes me sad to think that I've taken such a hiatus from my blog and doing a lot of my artwork, which I love so much. It made me not attend quite a few dog shows as well. Dropping a Corgi as you are trying to lift it onto the table is generally frowned upon. LOL. But I'm doing the best I can. And that's all anyone can really do, right?

Anyway, so here I sit this rainy morning (don't even get me started on how the low pressure weather systems coming in kick my ass too...) bitching and whining to anyone who is still reading this. Sometimes you just need to vent though. I'm not looking for sympathy. OK, maybe just a little. LOL. But I want to give a shout out to everyone else out there who suffers with this crap. And I can call it crap if I wanna. And so can you.

I am going to try to blog more. I miss my blog. And my readers, if I haven't scared you all away! I promise I won't bitch. Much. LOL.

I am sketching out a few paintings today. Trying to get a few decorations up for Christmas, too. I love Christmas with all of my heart and everything about it makes me happy. Be kind to each other today. You never know what another person is dealing with. I think that is something wonderful about Christmas. People are warmer and a little kinder to one another. If  the joy of the season could last all year, what an amazing thing that would be! That's where The Christmas Corgi name came from. I combined my two favorite things, Christmas and Corgis. Pure joy, both of them.

I will leave you today with two quotes to ponder from Miracle on 34th Street, by Valentine Davies:

“Faith is believing in things when common sense tells you not to.” 
“Christmas isn't just a day. It's a frame of mind.” 

I love those. 

Have a happy day everyone. I feel better now. (insert big sigh of relief here) Carry on. Love you all bunches. xo xo  CS


Unknown said...

Hang in there. I don't have fibro, but what you describe I have had most of my life in my neck and right shoulder. Constant pain and no amount of doctor visits or pain meds can help. I have headaches and a very painful and weak shoulder. I've tried it all, from yoga to acupuncture to traditional physical therapy... It does get depressing and my corgis are the only thing that keeps me going. I love your blog, even more so now that I know about your fibro. Keep your head up, and corgi on!

macqueen429 said...

I feel for you. I have migraines and it's hard when everything about you looks so right on the outside but there is so much pain on the inside that no one else can see. Just know that there is a whole community of Corgi lovers out here who are here for you whenever you feel up to posting! Merry Christmas!

Miccosukee said...

I feel your pain--really. I was diagnosed with fibro more than 25 years ago after being told I had lupus, chronic fatigue syndrome, was mentally ill and/or had lyme disease. I went from being the press secretary to a state cabinet officer and a competitive dressage rider to someone on disability who had to sell her farm and can never ride again. I had to give up my beloved pickup truck and my Airedales because they were too big and easily knock me over. My pet of today is my adorable Corgi, although I still can not lift him off the ground.
Like you, I never know when I wake up what kind of day I will have. At least you had a doctor that knew what fibro is. Mine wanted to commit me as all my pain "had to be in my head." Don't worrying about whining or bitching. At least not to me or many more of your readers. We are there with you.
I am sending you a cyber hug as it won't hurt your aching body.Take care and we'll be there with you.

^..^Corgidogmama said...

You described what it's like to live w/Fibro perfectly. You're allowed to bitch and whine when sentenced to the rest of your life with this dreadful and painful affliction. May I ask what med they have you on? Corgis help. Some days it's the corgi kids that keep one going. Corgi on dear Cat.
So glad to see a post from you again...regardless of the subject. Your honesty and sense of humor is always a treat!

Cathy Santarsiero, "The Christmas Corgi" said...

I love you all, thank you. Prayers tonight that we ALL have more good days than bad ones! Xoxo