Wednesday, April 23, 2008

This is the best description yet...

So I stopped by Cinders' site and saw reference to "The Spoon Theory", when I read it, I just had to take that extra spoon and add this story to my blog. It is by far and away the best description of what living with fibromyalgia is like that I have read thus far. Please take the time to read it.

until next time...


I've been M.I.A....

So it seems like forever since I've been able to post something, I'm sure you were beginning to wonder where I've been. Well, continuing with my great and "healthy" 2008, I've somehow torn my rotator cuff in my left shoulder. Wow, a whole new definition of pain has been discovered. I've been in absolute torture, which makes me sound really wimpy, but fuck it hurts! I've read lots of stuff on the internet that says, "you make experience discomfort when you lift your arm" or it may hurt to lie down...well let me tell you for the first 5 days I was at the doctor's twice and a massage therapist once, popping narcotics and anti-inflammatory pills and all I could do was pace. There wasn't a single position that wasn't excruciating. So now I'm on my super duper narcotics and I slap a lidocaine patch on for 12 hours and I'm hovering somewhere around not quite bearable. I've never quite experienced anything like it.
The doctor is sure that it's my rotator cuff, but the orthopedists won't accept me as a patient until I "fail physical therapy"'s taken a week and a half to get a physical therapy appt., which is in 4 hours and I have to go for at least a week maybe two, to determine that it isn't helping. To be quite honest, this is way ridiculous. Just give me the damn MRI and decide whether or not you're going to do surgery! I'm not looking forward to another 3 weeks of this, before maybe, I might, on an outside chance possibly get an appt with a doc who can actually relieve my pain. ick.
So I wanted to rant and let you know I'm still alive, but that's my limit for sitting at the puter....


Wednesday, April 2, 2008

bouncing back

So Saturday was awesome and I did my fair share of napping, which was much enjoyed. Sunday however was a total screwed up bust. Suffice it to say that a huge family issue came up, I don't want to get into any details, but suffice it to say, being in a "blended" family, and having to deal with ex-spouses, step-children, etc can really be a challenge. Much to my own shock and horror Sunday was one of those days....and here is how one totally hellish day can go for a fibromite, like myself.

Woke up totally feeling better than I had in several days, since I got caught up on my sleep, luckily. By 10:00 a.m. my world had totally and completely out of the blue, blown up. So like dealing with a major "family" crisis isn't enough...I can slowly feel the pain start creeping into my legs. After a few hours and much pain medication, that pain has become intolerable, but doesn't really matter, cuz I still dutifully have to meet the needs of those who created the crisis. By 4pm I knew I was pretty much going to be screwed for many days. Sleep hasn't come more than about an hour at a time since. My pain on a scale of 0-10 is sitting pretty consistently at an 8 for 3 days now. I got to tell ya, there's not much in life that's more wearing on the soul than chronic pain! I'm in one of those spots, where I just curl up in the fetal position and try to keep things as dark, still, and quiet as possible. How very practical....not!

I've again found that I've really isolated myself in a lot of ways....but I think it's been also a way of insulating others from what I go through regularly. The difference on Sunday is that I actually reached out, asked for help, and found that I have some pretty amazing friends out there, and a brother that is second to none. Not that any of them did anything earth shatteringly big, but they just simply supported me without question. I guess I've created a scenario in my head where I feel like I have to explain myself. They just recognized the situation for what it was and listened to what I had to say.

There's that nebulous point in life, once you've found your significant other, and established a life together....then you (err I) realize that the focus of your whole world and support has shifted ever so slightly, but in a very different direction. Growing up we just know that our parents are always there for us and we don't question. When we become young adults and first marry, we spend time bonding with our spouse and slowly changing that ever important parent/child relationship to one of parent/adult child. Well I have my new immediate family, and we've been together almost 9 years, and I love my husband and son more than anything in the world, and couldn't ask for 2 more committed people to build my life with. ..... yet something of late has shifted and I'm not sure what that is..... it's not's not's just different.

I'm not sure how to explain what I'm getting at here. I guess it's the fact that in my marriage and with my child, we work very hard together and discuss very openly how we're feeling with each other. On the flip side of the coin, I come from a background, where that kind of openness wasn't there. I always thought that finding your soul mate meant that everything just clicked and problems didn't pose big obstacles.....yes I know I was very Naive....but here's the deal; after having been with my husband for 9 years, we become a stronger couple every single day, and that is in direct correlation with how committed we are to each other as well as our commitment to working out whatever life brings our way.

So on Sunday, when I was in immediate crisis and my husband was 3000 miles away, I had a choice. I could just deal with the situation by myself and wait to hear from him ( which is my automatic default mode), or I could phone a parent and look for support there, but in the end I phoned a friend and then once things had calmed a little I explored the situation with a couple others. This is rambling on and probably sounding really confusing right now, but the important thing I got out of this experience, is that I don't have to be alone AND I don't have to insulate others from my disease (pain).

I have a soul mate second to none, a brother that I can always count on to tell me the truth and support me....and I have created my own independent support system of friends etc that are there for me night or day. For quite a number of years now, I've tried to be really self-sufficient and then only rely on a couple of key individuals to support me in crisis. My life is what I make it...and I by choice (but quite unconsciously) I made my circle too small, there's not alot of support and love that comes from that. By taking chances and risking my intimate emotions and thoughts with others, I've created a support network that I've really come to cherish.

As I type this it dawns on me that that's what "growing up" is all about. I don't know that I fit into the "grown up" category, but I do know that I drew alot of comfort from the knowledge that I wasn't all alone on Sunday. When I said on the phone " I just wanted to know that someone was on my side" the response was ever so simple, yet one of the most powerful I've ever heard "of course I am, where else would I be". I wasn't questioned, I didn't have to justify myself...I was simply believed in. These last few days with my fibro have been a challenge to say the least, but I've known throughout that...if I need to, I can pick up the phone and someone will be right there for me, with no other expectation than to help me feel better.

I'm so used to feeling a need to defend myself, that it's a relief and unsettling all at the same time....hmmm is this what being a grown up is all about? It's a very strange place I tell ya....