A New Beginning

Greetings One and All (or none! lol),
I am trying a new thing.  I haven't blogged about my pain before, well because just talking about it can be painful!!  When I speak about my pain, it can make it more "real", and make it harder for me to put it at the back of my mind and carry on.  And speaking about it can remind me of just how hard my life is, and what I can't do any longer, and that makes me cry. 

Shit... tearing up now.  I hate this, I really do.  I NEED a place to vent, and hopefully a place that will touch others, both those who like me, live in constant pain, and those who want to understand folks/family members who live like this.  It isn't easy.  Just getting up in the morning can be a horror story.  But I do, and will continue to do so, if I ever stop being able to, it will be time to leave this world because I will not be able to handle being totally dependent on others for basic cleanliness and such!!!  Hell, just this last time I was in the hospital without my power chair, it would take them over 45 minutes at night to answer my call light, even though they knew I had explosive diarrhea!!!  I refuse to be subjected to laying in my own filth.  I will never allow that to happen.  ARGH, I have gotten morbid soo soon!  But then, this is my ramblings, not some prepared prepacked post.  Those can be great, but that is simply not what this is.  It is straight feom the heart as I feel and think of it.  

A little history....

I started having knee pains as a child, along with some other leg pains, my parents didn't much believe in doctors for me unless they thought I was dying.  I remember having hallucinations from an extremely high fever as a child, I was just put to bed to rest.   When I was fourteen, I used to elevate my knees because they hurt so badly.  Now none of these things kept me from being active!!  I loved biking, swimming (Lived on an island!), walking and climbing trees :) 

My joints continued to get worse, creaking and hurting , in my thirties developed psoriasis, so after researching it, believe I had psoritic arthritis, it developes when you are a young teen and the psoriasis later around thirties :(   When in my early to mid-twenties also started having weird sharp pains in my forearms, and then my upper arms.  Went to doctors, they were  clueless, gave me a pain med that made me a bitch to my young son so I quit taking it.  Then when I was thirty five I finished my knees off.  My son had broken his ankle and my family instead of taking him to hospital had taken him upstairs to their home and called me to come get him.  He was a football type body kind of young man.... tall strong and a bit hefty :) I had to carry him back down the stairs, at the bottom of the stairs I made a misstep and felt/heard both of my knees go... horrible crunching sound, renching terrible pain.  I managed to stay on my feet the rest of the way to the car, but by the time I got to the hospital, we BOTH needed wheelchairs!


I was never able to stand unaided again.

They would NOT preform knee replacement surgery on me because they said I was TOO YOUNG.  If they had, I would have been able to work for AT LEAST another TEN YEARS as an RN.   Instead I was placed first on temporary disability, then the insurance company I had been PAYING for YEARS cheated me out of my PERMANENT disability I PAID for and instead had me placed on SSDI!!!  So now I live in poverty instead of a low middle class income.

Back to my weird arm pains... they increased, and started spreading up my neck and down my back.  I developed spots where, when my husband laid his arm across my back I would SCREAM.  I went to doctors from south east Texas to North Dakota, all I kept being told was "You have all the symptoms of fibromyalgia, but I don't believe in it, so we are just gonna treat the symptoms.  That is all they do anyway."  WTF???? It is a RECOGNIZED and ACKNOWLEDGED  DISEASE by medical authorities like the AMA, but they don't believe in it???

Finally last year, I went to see a WONDERFUL doctor named Dr. Bell in Crookston, MN and SHE tested me for fibro and diagnosed me.   Did it make my life better? Actually, YES!  Having the acknowledgment that I had a REAL illness and not some ass of a doctor telling me there was no such thing, even though I had all the symptoms validated that it wasn't just IN MY HEAD, and that my suffering was REAL.   And before none of my old doctors would treat me for pain, not until I finally got a REAL pain management doctor, who actually listens to me and helps me and DOESN'T treat me like a drug seeker.  I mean, after all, when he and others have tried to put me on some heavey duty pain meds (read strong narcotics) I refused, yet so many of the nurses when you call in about med changes want to say you want MORE.  I had to repeat myself at least three times once, telling a nurse who was filling in for my doc's regular nurse (who is a gem also btw :) that I was calling to say I was NOT going to continue to take a higher dose of fentenyl.  She kept saying "you want/need MORE pain meds???" and I was say NO, NO, NO, I am just calling to let my doc know I WONT be taking the higher dose, going back to the smaller dose, the higher one is too much.

Anywho, back to living in pain... There are so many days when it takes me so long just to get out of bed, because I wake up feeling like a Mac truck hit me while I am sleeping, from sore stiff joints that I can barely get to move without yelling, to fibro aching and making it hard to use my muscles and when I take off the blanket the cool air hits my muscles and makes them want to shiver, which sets off the fibro or worsens it, since the shivering makes the muscles move rapidly over the stone hard facia :(.   I have learned the hard way to take a whole pain pill first thing in the morning (yes, I usually take only a half a pill at a time because I don't like them interfering with my thinking, fibro keeps me foggy enough as it is !!!  So as soon as I can get it on, I put on a fleece poncho to warm my muscles, take my pill, wait for it to kick in, then try to start doing things.

Sadly, some days the fibro is sooo bad that I just want to curl into as small a ball as I can (and it aint easy for a BIG woman to do) and cry.. and I do.  And take another pill, which also makes me cry... I hate this...tearing up again..... it sucks so much living in pain. 

I keep getting side tracked... of such is my blog I guess.

A quick list of all my ailments (hopefully I will remember them all, it seems I am always leaving one or two out) :  Occasional Atrial Fibrillation, frequent PVC's, of course Fibromyalgia, arthritis everywhere, TMJ (tempromandibular joint disorder which causes excruciating pain in my jaw, side of face into my neck and has caused me to black out shortly before), IBS, psoriasis, abdominal hernia (which was caused by a fucked up weight loss surgery and has been TEMPORARILY repaired and makes my whole abdomen hurt and had a new WLS with the repair so a permanent repair can be done next) carpal tunnel (which is being repaired YAY!!! but one repair needs a repair :( lymphedema, and irriditis (sp?) which causes me to have VERY blurry vision... like someone is holding wax paper in front of me most of the time. OH, and now I have hair loss from the WLS (weight loss surgery) :(  OH and how can I not list so many doctor's very favorite one that they CONSTANTLY  have to tell me "YOU ARE FAT!" and I am like: "No shot sherlick! I never would have known if you hadn't told me!!! "   Yeah, I gained tons of weight when they stuck me in a wheelchair and wouldn't fix my knees... YOU try going from a plump active single parent who worked 8 to 16 hours a day to sitting on your ass all the time deep in a depression because you have supported yourself since you were 16 and then your son and now are scared and see no future ahead for you.  After that, almost everyone I met ASSUMED I was fat and lazy and that is how I ended up in a wheelchair :(   I said I used to be plump, but I was also TALL, 5'10 to 5'11 depending on who measured me at the DMV, and was a model for big and tall and had my fair share of suitors when young.

Enough for now... this is tiring!  But I hope this helps me deal with my pain, and maybe helps some one else know they are not alone.