Monday, May 24, 2010

Progressive Dinner

So it seems I have been neglecting my blog here. I didn't realize it had been so long since I have posted. I have been reading blogs and responding to them throughout week. I guess I have been wordy in my responses because it feels as though I have written several posts!

It dawned on me today -- I have several new friends! We have wonderful, meaningful, fun conversations, my friends and I. It just happens to be over the internet! How I would love for all of us to get together for dinner! And then I thought, we do in a way. We have progressive dinners. You know where you have appetizers at one persons house, and then salad and/or soup at the next, followed by the entree at the third house, and ending with dessert at the last. We read each others posts and comment and move to the next, and so on and so forth. What a magnificent group of friends I have!

Thank you, friends, for coming into my life. I have needed you and now I have you! Thank you, thank you, thank you!


Saturday, May 15, 2010

Variable Prevailing Visibility

Variable Prevailing Visibility: a condition in which the prevailing (current) visibility fluctuates rapidly while the observation is being made.

So maybe Fibro has variable visibility? We have “fibro fog”, so why not go with the weather analogy? After all, that damn weather – humidity and the barometric pressure – rules our lives. Check the forecast; you will know whether the next few days are going to be excruciatingly painful or agonizingly painful or maybe just horribly painful or unpleasantly painful or perhaps merely painful.

Variable visibility: "You don't look sick." "You sound like you are doing better." "You look good today." Thank you. We are glad we do not look like we should be wearing sackcloth and ashes. We are glad we don't look like death warmed over. That's good, thank you.

But could you observe for a moment? Could you see the pain and apprehension in our eyes as we slowly sit down? Could you see us wince as we squirm in the chair to try and get comfortable? Could you hear and see the sigh, the slump of our shoulders, and the sigh of relief, as we finally do get off of our feet?

Visibility: So, could it possibly be: "You don't look sick. I don't know how you do it when you feel so bad." "You sound like you are doing better. I hope that means you have found something to help with your pain." "You look good today. I hope that means you are having a good day."

If you could work with us a little, maybe we could be visible all of the time. Maybe you could understand that this is it. This is us. This is the way it is going to be. We have fibro/CFS/ or any one of the many other chronic diseases that suck the life right out of us.

Here we are. We don't like it, but we are trying to manage as best we can. Can you please see us? The person you have known is still in here--I hope--somewhere in here underneath the pain and fatigue. Please see us and accept us as we are now. Maybe if you do maybe, just maybe, we can accept us, too. Maybe, just maybe we can find ourselves again. Even with the pain and fatigue.


CJ, in time -- maybe, just maybe...


I was reluctant to post my last offering. After all, I was going totally against the grain, against the entire Fibromyalgia Awareness campaign: "Fibromyalgia, the Invisible Disease". I understand what is behind it. Lord, we have all waited and waited to be legitimized. We have waited and waited to have someone believe us and know that what we are experiencing is not all in our heads!

We still encounter them frequently. The neurologist who doesn't believe it is a major condition. The physical therapist who says "pain doesn't equal damage". Okay, so maybe his kind of damage doesn't equal my kind of damage, but I am the one who is going to hurt even more over the next several days and he doesn't believe my pain is genuine and justifiable.

Justifiable pain. Now there's a concept. We are in pain (need a bigger word here) and are constantly fatigued. It hurts to be hugged. It is an accomplishment to make it through the showering and the dressing at the beginning of each day. But, now we have to sit down for a minute. More than a minute, but that's what we say: "just for a minute". Our hands and feet hurt, our skin burns like a fresh sunburn. Our necks and shoulders, and other parts of our anatomy, are in tight, throbbing knots. Our ability to concentrate, to focus, to process information and apply knowledge is shaky at best. It has cost many of us our careers. Yes, many brave women managed the pain and the fatigue at their jobs -I am in awe- yet have been brought down by this innocuously named condition known as fibro fog.

Justified. Legitimized. Validated.

Who would think that our first step in getting treatment for our condition would be to become VISIBLE?



CJ, in time

Wednesday, May 12, 2010

Happy Fibromyalgia Awareness Day!

Fibromyalgia really isn't an invisible illness if you just take the time to listen, if you take the time to try and understand, and if you truly take the time to believe what the fibro patient is saying. Yes, we do seem "normal". We "don't look sick." Aha, but yes, we do. Look in our eyes and you'll see it...pain that never ends, fatigue that goes deep inside to our bones.

You will also see perseverance. You will see determination. You will see someone that doesn't have a low tolerance for pain. No, just the opposite, you will see someone who has incredible tolerance because we live with this pain and fatigue all day, every day.

We wake up with the pain. We wake up feeling like we never slept -- chances are we didn't get much restorative sleep. We are awakened 10--20--30 times a night. We go through our day with the pain and the fatigue, watching the clock to see how long it is before we can take more pain medication. We may sneak a nap because we can't keep our eyes open one more minute.

Fibro really isn't invisible. Not if you take the time to listen. Not if you take the time to care.

So, Happy Fibromyalgia Awareness Day!

To all of you that live with this scary and daunting disease, bless you. Bless you all ten times over! Fibro's not invisible and neither are we. Please, just take the time and have the patience to care.

CJ, in time

Tuesday, May 11, 2010


I ran into one of those "friends" that unceremoniously dropped me over a year ago. This was a group of seven "friends" that had been together for over five years, that emailed almost daily, that got together at least 2-3 times a month. This was a group of ladies I thought were forever friends. We would get the whole gang together with our husbands and go out to eat, watch the super bowl, etc. We talked about how we would still be together in our 70's and 80's. These were my friends.

And then I became depressed, seriously, critically, clinically depressed. Then the Fibro kicked in with a vengeance. I retreated. I crawled into a hole. I became a zombie, doing only what absolutely had to be done for me and my family to exist. And, only exist. The living, the life was gone.

Well, I guess my "friends" had enough. They stopped emailing. They stopped calling. They, as a group, decided I had "moved on". They, as a group, were no longer going to email or call or invite me to the get togethers. They, as a group, were through being my friend. Can you imagine? I did.

I pictured them gathered around the table. What to do about CJ? She doesn't email. She doesn't come out anymore. She must have moved on. We will, too. We will drop her as our friend. All in favor, raise your hand. Opposed? No? No. She is no longer our friend.

So, today this "friend" sees me for the first time in over a year. I am getting a pedicure (a luxury I allow myself every now and then). She is finished and comes over to me. "CJ, how are things?" Like nothing had ever happened. Like she saw me last month and wanted to catch up. She peppered me with questions. How's your husband? How's your daughter? How's your son? With each question I had to fight the tears back. I dug my nails into the palm of my hand. Harder. Harder. How could she act this way? How could she be asking about my family like she was still a part of my life? How could she act this way after the way she treated me? What the hell is a friend, anyway? Can I melt into this chair and get away from this pain? Does she not see it? Hear it in my voice?

No. She couldn't. I was the cashier at the grocery store - the woman at the dry cleaners - the girl who just did her nails. I was just another person in her day that required polite behavior. Just another faceless person to attend to when you are polite and behave with good manners.

She didn't see me. She didn't see the pain she was causing. The pain she caused. I have dreaded this day. The day I would run into one of my old "friends". Living in a hole left little chance that I would. I was safe in that hole.

And now I hurt. And I am so tired. I hurt physically and emotionally. I can feel the tension in my shoulders and in my neck. And in my hands, with the indentations of my fingernails deep inside my palms. I hurt and I have a headache. I have a killer headache from holding back the tears.

How could she not see?How could they not see? How could I be put out like yesterday's garbage? Gad, I hurt. I am so tired. I hurt. I hurt. I hurt.

Stress? Yes, it affects fibro symptoms.

just me

but maybe, just maybe,
CJ, in time

Monday, May 10, 2010

There, but for the grace of God...

I was reading another Fibro blog -- A Patient's Perspective on Fibromyalgia -- and she was talking about the effects of stress on fibro symptoms. How timely. I am a new blogger so not many follow my blog. Those that do are the cream of the crop, though! Anyway, I haven't written anything in almost two weeks. Did ya miss me? The effects of stress got to me. Big time!

I have, since February, been dealing with repairs on my house, needed due to the three leaks found in my roof--plus the ensuing mold. It is amazing how much mold we can grow in the desert. Since the discovery of these leaks I have had infernal machines running 24/7 x 90 some days, various forms and all manner of destruction in order to restructure, all manner of handymen in and out of the house, and all manner of "we also found..." or "this needs to be done before we can even begin to look at...". This nightmare began approximately one month after my husband packed up and moved out of state to take a new job. The plan was for me to follow after the house was sold. I figure at the rate we are going I will be joining him sometime in the year 2012.

During this same time, actually since December, I have been trying to get someone, anyone, to figure out what is wrong with my right foot that makes it nigh on to impossible for me to walk. You know another problem about having fibro? Now, any pain I have is chalked up to fibro (or the peripheral neuropathy). Well folks now four months later, No, it’s not the Fibro or the neuropathy, it is a ruptured tendon in my arch. Now starts the PT.

So my life has been hammering, sawing, stomping five days a week. Infernal machines 24/7 seven days a week. PT two days a week, sprinkled with an assortment of doctor appointments ("You need to exercise.") generally one a week.

I snapped under the pressure. And, I have MISSED you guys! But, I couldn't bring myself to write. What a wimp. Rose had her appendix taken out and she's still writing! Gees! But, the kicker was a Mother's Day story in our paper about a family of five who have been living in an old school bus since February, a step up from the month they had lived in their van, since they became homeless. And, the mother was just diagnosed with Fibromyalgia. Can you imagine? This week a program here, for homeless children, is moving them into an apartment and will help the dad find a job. Can I get an Amen? AMEN!

So, I am thankful for my leaking roof, because I have a roof. I am thankful for the noise and the handymen, because we can afford to fix our home. I am thankful that my husband is living out of state, because he now, after nine months of unemployment, has a job.

I have two fantastic children that make me proud, make me laugh; make me feel loved every day. I am in a flare of all flares, didn't do a thing but watch a marathon of Eureka on the Syfy channel with my son ( my daughter is married and lives out of state), but I had a great Mother's Day!

CJ, in time

Rose, I am so glad to hear you are okay. Don't try and come back too fast---TAKE CARE of yourself!!! HUGS!