Wow...meds that work?!!!!!

So we finally got me on Celebrex, which made an instant impact on improving my shoulder pain! Yea!....we've actually discovered that my problem is in my neck and not my shoulder, who knew? I in fact am having trouble with my c5 and c7 vertebrae. I had an MRI done last week and will see my doctor on Thursday. To my untrained eye the results of the MRI look bad, but I'm hoping that my doc doesn't see it that way...ick.

But since the meds are working, I'm hoping to be back up and running with my blogs. I tooks some great pics this weekend when we were out camping and will try to post them in the next couple of days.

As for my fibro? It's been up and down. It was funny, cuz when I was taking the heavy duty narcotics, I was feeling pretty good as far as the fms goes...in the narcotic haze it never dawned on me, that it was actually the narc's doing their job...lmao...sometimes I'm a little slow! One of the side effects of oxycotin is that it worsens restless leg syndrome, from which I suffer....man....I do NOT repeat NOT want to do that again. I've never had so many long nights of no sleep in a row...not to mention pacing around the house so I wouldn't go crazy with my legs...keeps me from wanting to be addicted that's for sure...lol...so now I'm in wait and see mode and just enjoying (if you can say that) only living with fibro and not my shoulder pain too. How weird life is!

I'll keep you posted on my doc appt. hope everyone is well! It sure feels nice to be back online!!!!

hobbz

sigh

So obviously, I'm still struggling with my shoulder. I totally hate not being able to blog...but sitting and typing is very painful. I had a steroid shot last week and I'm still waiting for it to kick in...I'm hoping that will be soon.

I feel like I'm really losing my momentum, with the blogs, and my health and my life in general. This is so damn frustrating!!!! I am soooo tired of hurting, and being in a fog due to the narcs and not sleeping crap crap crap!

sigh, what doesn't kill us will make us stronger, right?????? I sure hope so!

I will be on as soon as possible! please please keep tuning in!

hobbz

On the mend????

So the good news is, that my arm is no longer excruciatingly painful, just a 6 out of 10 on the old pain scale that we're all so familiar with. It used to be a 9-10 so progress counts for something. My doctor put me on prednisone and now my heart has been doing funky things like pausing to take a rest instead of jumping into that next beat. I spent Friday night in the ER after it kept missing beats for about 2 hours, of course it was even doing it in the parking lot of the hospital....but the minute I was hooked up to that cardiac monitor, it just chugged along for 3 hours in normal sinus rhythm. Just like going to the repair shop with your car. It's done it several times since then, but my doctor says she thinks it's just the steroids and that it should resolve itself over the next couple of days, if not it's back to the doc I'll go.

I have made some improvements in PT so, I'm hoping that I'm on the upward swing for now. What is it they say about expectations???? "they're just future disappointments/resentments"??? Well I'm trying really hard not to build any, but I sure do hope that things are slowly improving at this point. All though I have to laugh because I keep miss typing my words as my finger tips are all numb on my left hand. yikes.

Sleep too, has come a little easier with the decrease in pain. I actually just got up from a lovely nap, that was simply divine!!!! aaaaahhhhhh, I love naps! Aren't they just the coolest thing?

So here's hoping that the tides have turned....

hobbz

"kinda, sorta...but not really"

So this has become my mantra of late. "kinda, sorta, but not really"... is my shoulder getting better???? kinda sorta but not really. Nobody seems to know what's wrong with it, and it still hurts like hell. I'm on constant doses of oxycontin which is making me quite useless, yet I'm still trying to work and function, because I only just barely have enough vacation time to get through my trip to Canada this summer and I'm down to 1.46 hours of sick time. So pretty much on the work front I'm screwed. On the home front, my husband is in town for now, so it takes alot of the day to day tasks off my shoulders, but doesn't make it any easier on him or our son....sigh yet again.

I went to the doc for the 4th time now, and she added prednisone to my steady diet of pills and patches. So far it's been 2 full days and the pain is slightly dulled, so keep your fingers crossed. I've also been getting only about 4 hours total of sleep a night which is good in that, it's double over the amt. from the last 2 weeks but it's about a third of what my body needs in reality...on a good day, let alone a bad fms day.

I had a shoulder x-ray done, as my PT and doc were sure I had either a bone spur or cartiledge damage....but nope...everything looks "perfect" with my shoulder. Now in most instances this would make me happy, but right now it totally sucks, cuz we're still completely lost in terms of what is wrong with me. Quite frankly the pain and lack of sleep are really getting to me! This whole situations sucks!

All I can think is here's hobbz complaining yet again..some more...another time. It seems like everytime I get over one major health issue another comes up. So here I am with major injury/problem number 4 in as many months. 2008 can retire right flipping now for all I care. lol.

So I apologize for letting both my family blog and my fms blog suffer, but I can only do what I can do, and at the moment: what I can do is pathetically little. For the now the plan is to continue with PT for another 2 weeks and if there isn't "significant" improvement then it's off to the MRI and an ortho surgeon consult...ick ack oop. Please, please no!

On a completely different topic, I hope folks had a chance to read the "spoon theory", it's the most honest and accurate account of what it's like to live with a chronic illness/disability that I've come across. Though it was conceived of and created by someone with Lupus it speaks totally of my experience with fms, and I'm guessing the same is true for MS, chronic fatigue, etc....

fight the good fight folks, and I'll try to be on more!

hobbz

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.

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf


until next time...

hobbz

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"....it'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....

hobbz

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 good....it's not bad....it'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....

hobbz