I have been going a bit nutty lately, (nothing really new, lol, but more so then normal).
I apologize beforehand if you are reading this and maybe are sick of hearing about RSD or CRPS or about how I am in constant, real pain, but I can't sleep right now, and I haven't been able to catch up very good lately on anything with this blog, because of this awful disease. I am never, ever the type to sit here and wallow and think that I am worse off then anybody else, I am the opposite, but I do have days when I am in pretty bad shape. That has been pretty often lately...
I am actually anxious to be going to my family doctor first thing in the morning because even if I don't have health insurance right now, I need a trustworthy person to talk too, and hopefully re evaluate and re structure my pain management. I also like to hear from time to time that I am not crazy, because sometimes I wonder how this is possible and how can I be in this kind of shape, I mean, I don't "look" disabled, and my life isn't threatened in any way, I am just in constant, consistent, pain.
So, I wrote up my pain diary, 5 pages, both sides, covers the last week or so, and i am hoping he has the time to listen to the newer additions to the now, 40 layers of pain that I go through at any time. I need a new plan or some sort of hope, something to look forward to, I need to be able to catch up with books, book reviews, and housework, coupons, my little ones, and get back in the swing of things. But the newest symptoms have led to some rather horrible days and nights, some where I can barely move and I have to at the least, have some sort of way to get the newer pain, to come to a halt. I am planning on soon raising enough money for Calmare therapy, which isn't covered by insurance anyway, and is going to cost a little, and some travel. But not to much, and I am able to see the light;)
Instead of being "hit" with pain episodes, I am "hit" with small, short fragments of bearable pain, or enough strength to force myself to do what a mom, or a wife, or a human, or a blogger has to do, and wants to do. When I am "hit" with these good times, I spend most of the time, frantically trying to figure out what in the world I can quickly accomplish, often times, I only figure it out by the time the burning, or the tingly, electric shock pain start. Then I am back to being "me' again.
If you ask me what RSD is, I would have to say I don't really know! Other then the R standing for REFLEX and the S for SYMPATHETIC and the D for DISORDER, I have been diagnosed 6 years ago with this, and still have no idea what to do or what to expect. I have no clue as to what is normal, I don't know really anybody to communicate with who knows exactly what I am going through. I have some friends online, but this disease seems to be very different in all of us.
What I do know, is:
I have dealt with chronic pain for several years. I finally gave in and had reconstructive foot and ankle surgery about 6 years ago, it failed miserably, and the surgeon kinda just shooed me away and referred me to pain management. They basically said, "You have RSD, physical therapy, medications, injections, nerve blocks, blah blah blah" Well, I got nerve blocks, epidurals, they helped a little at first, then gradually stopped helping at all. (Sorry!! I am trying to make this as short as possible, I don't want to bore anybody!! Lol!!)
What I make of this 'disorder" is, it seems that any type of trauma, pain, injuries, pregnancies even, even bug bites, sunburn, anything that maybe caused any type of pain, on any level, is repeated over and over and magnified on so many levels.
My RSD started in my feet and ankles, and started to spread to my legs, my knees, then to my hips, then my back, jumped to my right eye, now my whole back, and the limping causes more issues, and I still have tendons that are torn, bones that are crushed, and metal that needs taken out of my ankles.
Each part of the affected parts have had some sort of trauma, and I started to realize this when I started getting a piercing, sharp, burning pain in my right eyeball. The ankle, feet and leg thing was going on for a while before my RSD set in, so that was pretty understandable. But my back, apparently just spreading??
Then I finally got a tattoo I always wanted, which is on the top of my back, I absolutely love it!! It really didn't hurt when I got it, but now, I am ALWAYS being tattooed! Crazy!! It hurts very much, always burns, always sharp, razor type slicing in my skin, and nothing seems to help.
The most recent of my pain, just the last few months, I thought I was going insane, for real this time.
I have 4 children, 2 boys, and 2 girls, ages 20, 9, 5, and 2. My pregnancies with the little women weren't bad at all, a breeze actually! The boys, way different story! Twice as much weight gain, and twice the cramps, and the contractions!! OMG!!! My 9 year old, caused some pretty intense back labor, not long, (all of my babies were born within 3 hours, and got less time with each one), but the intensity was terrible and even though it immediately stopped the second he was born, it left lots of achy, dull pain behind! My 2 year old, yikes! I had this horrifying squeezing, like a snake, squeezing my insides and letting go every few minutes, both of these contraction types are now happening on a regular, daily basis today. (NO!! I'm not pregnant;)
I guess one of the points I am trying to convey here is, I have no idea what is happening to me!! I have found that everyday is different! Odd things like certain noises really hurt and radiate on so many levels! I have hot, burning welts that appear out of nowhere on my legs! Contractions every morning for a few hours, and sometimes they last all day, and I really need them to stop!! I need some answers, some sort of light at the end of the tunnel, and I would love if any of you have any advice or tips or know anybody with this disorder that maybe has had any relief from anything.
I have to get it back under control, it seems I had it under control, it didn't fade, but I was used to it. But, everytime something new starts, it takes a while to understand what is happening, and well, to get used to it. I really miss my normal life, and I hate that some of my children never really knew the real me. They only know me as this mom who limps around, and can't take them to the park, and can't get up and down steps, and can't get everything done.