Wednesday, November 10, 2010

on pain and postings

I said when I started this that it wasn't my favorite thing to do, talk about my pain. 

I still avoid it.  

But when I looked into my own eyes a short while ago, I thought " why do I look so unhappy?", oh, yes... the pain.  sigh.... 

I have been in a flare of varying degrees for a week now.  Today started out not so bad, but the pain has increased as the day has progressed instead of perhaps lightening.  

And yet I am determined to cook dinner, the dinner I had planned.  I hope it does not cause me more intense grief, but I know I am pushing myself.   

I have already put off longed looked forward to visits from my family, and that only brings it's own kind of pain.   I am putting them off no more.  If tomorrow I suffer, so be it. I will cook, and I will see my beloved family, even if only for a short visit.  They brighten my day in many other ways, and sometimes the pain is less while they are here.  I just hate it when I can't hold my grandson.  

Wishing you all pain free and joy filled days...

Saturday, October 16, 2010

ARGH!!!!! The blasted change of seasons!!!

I love the fall, I really do!  

But I HATE the pain that comes with it.  

Barometer is climbing, temps are dropping, and I am hurting in my joints in ways I haven't hurt all summer!!!  

Sharp pains with movement, attempts to stand have become dangerous, my knees might give out, or my shoulders as I try to lever myself up to transfer.  

Praying tomorrow is better... praying I don't have to use as much pain medicine as today.  :(  

Sunday, October 3, 2010

days after my wrist/hand surgery

my hand is doing pretty good, pain is much less in it, and able to use my fingers more.  

The rest of my however, especially the right shoulder and my back, are in worse shape.  The struggle I had using the "handicapped" restroom that really WASN'T set up right for transferring from a wheel chair, is harder to get over.  The stiffness and pain are less, but the restrictions on my movement and the pain are still great. I could barely get out of bed this morning, took more pain meds than I like to enable me to move without tears...

When day surgery called to check on me, they not only asked about my hand, but about my shoulder because they KNOW that it is the hospital's fault I re-injured it.

hurting sucks.

Thursday, September 30, 2010


I had surgery yesterday on  my left hand/wrist.  It was a repair of a carpal tunnel surgery done last year when the nerve was nicked.  


It woke me up at 3am, took some pain meds hoping I will be able to get back to sleep.  

Also, hurt my already damaged right shoulder trying to get up off of a supposedly handicapped accessible toliet that wasn't more than 16 inches off of the floor!!!! 

ARGH, hunting and pecking typing, trying not to use my left hand sucks, stopping here. 

hugs and be well folks!

Tuesday, September 21, 2010

And yet again

Yesterday I didn't want or feel like talking about pain.  I do get so damned tired of even thinking about it, yet when you are in pain 24/7 it is practically an impossibility to not think about it.  

Woke up yesterday feeling like I had been beat on in the night.  Typical.  :(   Also had several other things going on, part of IBS and lactose intolerance I am not EVEN going to get into here! lol   

Today wasn't as bad in many ways, thank goodness!  I had rescheduled my doc appointment till today, so I was able to make my pre-op appointment, I am approved as long as my blood tests are ok.   

Sitting here now with a heating pad on my neck and shoulder, same blasted shoulder that woke me up last night from the pain.  

Hoping y'all are having better days! 

Saturday, September 18, 2010

Puddle of pain...... again.

The pain runs up and down both arms and across my back  in those increasing waves... despite pain meds.  Breathing hurts.  

I just want to curl up in a ball and cry until I dissolve into a puddle of pain ridden tears....

why can't they cure this???

Usual Morning

Woke up this morning with my usual deep fibro ache, down my neck, across my shoulders, down my upper arms and down my back.  

Chilly this morning, so I have my fleece poncho on to keep me from shivering, which would only make the fibro worse.  

Barometer is steady at 30.23, which I hope means that that sunshine I see outside is gonna stay!!!  

Wishing everyone pain free days (or at least a few hours in your days).

Friday, September 17, 2010

cont. Bouncing barometrics

sigh... barometer is 30.1 and rising :(  

They promised nice weather tomorrow, I hope Mother Nature told them, so they are right!!

Pain Tsunamis

With Fibromyalgia, at least in me, the pain will often start out as small waves of dull aches that increase in strength and duration until they finally feel like a tsunami, or tidal wave of pain that swallows me and drags me down into it's depths without hope of relief.  

I try to take some pain medicine as soon as I realize what has begun, if I do this, I can usually keep from being totally overwhelmed, but too often still feel as if I am barely hanging onto the life raft.  

I am experiencing the building waves now... 

And yes, the barometer is changing... 30.09 and falling...

ahh.... it's waaayyyyy too early in the morning!!

Yet here I sit, at the computer, attempting to function :(  ugh... 

Good news?  pain level isn't horrible.  Bad news?  expecting some bouncing barometrics today.... it is 29.99 and rising right now.  

Praying for level pressures and sunshine tomorrow!  Trying  again for help planting....

Wednesday, September 15, 2010

Bouncing Barometrics!!!

Ok, it is my thought that it isn't low or high barometric pressure that makes pain worse, it is CHANGING barometric pressure!!!

Because I can be ok on days when the barometer is high, and ok on days when it is low, but when it is changing or worse, bouncing up and down throughout the day, I feel like I am going to dissolve into a puddle of pain!!!  

The barometric pressure is 30.08 and falling... again. 

That was this morning, it is now nearly 4pm and the barometer is holding steady at 30.0 and my pain is staying at a somewhat manageable place.   
8:15, pain increasing and yep, barometer 30.05 & is rising again... 
Barometer didn't bounce quite so much today, until this afternoon, went up, then back down some and I really felt it in my arms, could NOT lift my arm up or reach out for anything, a sharp pain would shoot from shoulder  into my upper arm and I would feel something locking up. 

wakened by pain, again...

The pain in my arm and leg woke me up, again.  

It is getting worse, not better.  

I want to sleep!  Please pain, go away so I can sleep...  

Oh, barometer is 30.0 and falling still...

Tuesday, September 14, 2010

Low pain day part 2

Well, I have made it through most of my day!  The lidoderm all the way up my arm has helped, although nothing totally takes away the pain, and still took  my pain pills, cause, still have all my other pains going on!  

I was able to do somethings, made ratatouille, so much cutting!!!  I was afraid I wouldn't be able to finish getting everything cut, much less in the pot to cook!  Thankfully my home aid was here, and with her help I was able to get it all in the pot and cooking, but three quarters of the way done, my arm got weaker and weaker, back started aching worse, and then I couldn't lift my right arm above my chest, hard to cook that way :(  

But it was a success!  I changed the recipe some, and found others I think will be better for next time, yeah, you can't keep me down pain!  But no more chopping for today!lol   and maybe not tomorrow... we shall see.  

Wishing everyone pain free days!

Low pain day!!!

Today isn't a bad day, pain isn't unbearable today :)  Just wish I wasn't worn out from days of pain already :( 

I am going to try to keep track of the barometer also, just curious.... todays at 4:30 pm is 30.18 and falling. 

Cut off my arm above the shoulder... PLEASE???

Last night I hurt so bad.... well it started late that afternoon.  A deep deep ache from my right shoulder and spread into shooting pains down all the way into my right thumb and index finger.  I tried heat, tried pain pills, but the pain only grew until it also got to sudden spasming in my upper arm making yell out in pain and start crying.  I hate putting on my lidoderm patches in the evening, because I am frugal and I wont get a full twelve hours of use from them, but I am not stupid, nor do I enjoy pain, so I grabbed one, cut it into strips to go up and down my arm, had hubby help tape them securely down.   After they had time to take effect I was ok.  

Sigh, I know it is because I do too  much, but if I don't, who will??? No one. 

Sunday, September 12, 2010

Family Pain

Why is it, that family will let you down repeatedly, promising to help you with do things you are physically incapable of, then act like they are the wronged ones when you actually expect them to show up and help??? 

My heart is ripped out once again.  It's just too  much pain... physical pain I can deal with, but this?  It truly makes me want to give up.  I can't do it all alone, I don't ask for big things, only small ones, at the most a few hours of not constant work at the most, digging holes for a few plants.   

One of the joys of my life, gardens...  the other would be family, it still is some of them... a beautiful grandson and granddaughter, and my daughter in law... They find time for me, ASK if there is anything they can help with, I try not to ask her for help too often though, because I don't want to be a nuisance.  But others?  Asking them for ANY help is too much!  It would take away from the gaming time to help, and oh my! That is MUCH more important than I ever could me, no matter what they say, because if it wasn't so, they would MAKE time to help me at least once in a while.   They will come over IF I don't need help with anything and it is just for a visit, but if it is even hinted that I need help, they are always either too busy or too tired.  

I am very grateful that I have aids who come in and help with my home things, or I wouldn't be able to keep my home like I want it, I know I would not have help from blood... 

Sometimes I fear the pain will get too great and overwhelm me... it has come so very close before....  I pray for healing and I pray for strength...

rain rain go away...

As those of you who suffer from many pains know, when it rains, it hurts!!!  We have had rain on and off (Mostly ON) for over a week  now.  The pain in my right upper arm is killing me.  I put a half a lidoderm patch on it ( stick on patch that has lidocaine in it), took a whole pain pill, and STILL it HURTS.  

What happened to my sunshine???   I could use some sunshine, it helps ease my pain some when I can sit out in the hot sun, especially with it hitting my arm, shoulders and back. (yes I use a heating pad, it helps, but not as much).  

Neck is also still stiff and sore, heating pad eases it some, but as soon as I take the pad off and it cools down it is as bad as before.  

Wishing everyone sunny pain free days!

Thursday, September 9, 2010

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.