Thursday, September 30, 2010

Update about why I'm not posting much.

I was DX: with Fibromyalgia, Chronic Pain Syndrome, Restless legs Syndrome and Chronic Fatigue Syndrome. No meds have worked yet with my severe pain.

I SO HATE WAKING UP SO exhausted THAT I CAN'T KEEP MY EYES OPEN AND EVEN WHEN I GO BACK TO BED AND WAKE UP AGAIN I'M EVEN excusted THAT WHEN I WENT TO BED THE FIRST TIME.
PAIN PAIN PAIN GO AWAY DON'T COME BACK ANOTHER DAY!!!! HAHA
TODAY IS A BAD BAD FIBRO DAY. I HURT FROM MY HAIR ROOTS DOWN TO MY TOES.
I WILL TRY TO PUT IN WORDS JUST HOW I'M FEELING RIGHT NOW.
What I call zapping = zapping is when pain hits me in spots here and there, where the zapping pain moves all over my body as in it may zap my upper leg and eye at same time or another place in my body it don't just hit one place and stay there. That's what I call zapping(pain).
MY HEAD:
My eyes hurt with pain or throbbing in his head and eyes all the time be it strong or lite. My eyesight is always coming and going making it very hard to see clear, with tired dried burning most of the time. Headaches from strong to mild. Ringing in my ears that come and go. "THE FIBRO FOG" it upsets me not being able to remember things like when I'm talking I forget what I was just going to say or I go to write something down so I don't forget it and I forget to write it down hmm. My hubby will tell me to remind him of something and I can't for the life of me remember what it was. Lights hurt my eyes anytime of the day or nite. I can now smell things stronger and longer that now upset my tummy or goes straight to my head. It's strange how I can even smell some of this stuff. The bones in my face all hurt and it's not like the same feeling I have when my sinus kicks in this pain is more like a dull to painful feeling like my bones being chipped away little by little on the inside not outside of them. The mussels feel so sore like I over worked them. Zapping pain all over even in my eyes .

MY NECK: Has dull to painful and I get zapping pain in different spots all over it. My glans swell up and become sore.
My neck feels sore to just touch it and it feels like it can't hold my head up any longer. The bones in my neck go from dull to very painful and my muscles are tender to very sore.

MY SHOULDERS: Oh my they never stop hurting not even on a good day. I always have that feeling like my bones being chipped away little by little on the inside not outside of them. both my shoulders feels like there both being pulled and twisted out of there joints oh my they hurt so bad. They both hurt when I just try to move or bend my elbow or just move my arms at all. The bones in my shoulders go from dull to very painful and my mussels are tender to very sore and then I get the zapping pain in them.

MY ARMS: The bones in both upper and lower arms all hurt from feeling like my bones being chipped away little by little on the inside not outside of them. The mussels feel so sore like I over worked them and are badly bruised. Oh my when I get that zapping pain in both my arms its so painful its hard not to set crying like a little baby. Both of my arms feel so heavy when I move them.

MY HAND & FINGERS: I'm now getting Charley horses in them both along with cramping, burning, throbbing burning and pain in them both.

MY BACK: My lower back never stops hurting , aching or burning. I know when the pain in my lower back moves down to my butt cheeks that I had better find a place to set down or the pain will feel as though someone just kicked both my legs out from under me and down I fall and sometimes without a warning. BED TIME WOW I try to stay up as long as I can till I'm so tired I just pass out then I'll go to bed because I know when my body touched the bed it's going to be so painful that's its even hard to catch my breath due to being in so much pain. I have to lay still as I can not to move at all so the pain from the bed touching my back will go down to a dull pain. But now if I need to move or turn in bed oh my all that pain comes back again till my body gets used to the bed touching it this happens with each movement, even on my good days. Zapping pain all over.

MY CHEST/ RIBS: The more pain I have the harder it if for me to breath. My chest and ribs always feel like I should be black and blue all over. Just to try and wear my bra can be so painful for it just touching my ribs and skin oh my. I always have aching all over my chest and ribs. I also get zapping all over and pain inside my ribs and my chest bones and boy does it ever so hurt.

MY STOMACH: I get Charley horses in my stomach so bad and bloating and zapping pains all over. Everything i eat or drink I get an upset stomach. My bowels are no longer normal for me.

MY HIPS: OH My what pain wow both hips feel as though there being twisted and pulled apart. Now days I don't have to move much with hearing them pop feeling like they just popped out if joint. Then pain inside my hip bones ache and zap all over with pain. Some times it fills like I'm giving birth again.

MY LEGS: My legs are swelled up and stay that way and now I'm getting these hard knots going from the sides of both legs over my knees up to both hips. The knots are very hard and heavy and are starting to hang down pulling my skin so it makes them burn and ache, man they do get in my way too. I can't lie on my sides thinks to these long big knots due to feeling like I'm lying on a wadded up thick blanket. Zapping pain all over.

MY ANKLES & FEET: My legs and feet both stay so badly swelled that I look deformed from having rolls on my ankles and legs. I have stretch marks on my feet even from them swelling up so big. My legs and ankles and feet burn ache and feel like there badly bruised but there not. Zapping pain all over.

MY SKIN: My skin always ache and burn and feel as though its badly bruised all over. Zapping pain all over.

MY JOINTS: My joints from my head to my toes all burn, and all feel like there being twisted out of there sockets as there shooting pain in them. The bad thing is I don't even have to move for them to hurt and oh my when I do move any joint its so painful that it even makes it hard to breath. All my joints are always popping like they just popped out of place and that is so very painful. Zapping pain all over.
MY MUSCLES: My muscles burn and get Charley horses all over them from my face to my feet. Not a day goes by without them aching and burning. Zapping pain all over.

MY BONES: I always have that feeling like my bones being chipped away little by little on the inside not outside of them. They ache all the time never stopping. A dull persistent (usually moderately intense) pain. Sometimes my bones feel like there on fire and to use them as in to stand up wow the pain kicks in even more so, with the feeling like there about to explode at any time. Zapping pain all over.
I know I have left out alot of other things but this is just some of the ways I'm feeling the last few weeks.
I have something going on with my feet that is new ,well its been going on since last week in July2010. My nest to last toe next to my pinky toe is being pulled under my foot on both my feet. I can see what looks like a line or where a tendon is being pulled tight and it runs from mt toe up to my lower back on both sides. What can this be? I cant strighten out my legs without it pulling on my toes and the wow the cramping Charley horses.
Funny how people that do'n have Fibro can tell you I't all in your head or you just need to go for walks. Ok let them put on my shoes and let me see just how far they can and will walk. Don't think they would make it more that 5 or 6 feet befor they were hurting so bad that they have to set down or fall down.

Sunday, May 23, 2010

I'm still here

Hi There, Sorry for not posting in sometime things have been nuts here for some time. With my hubby Karl having a type of bone cancer we have been going nuts having to go to all his doctors and now with Karl having all these blood transfusions 2 times each week now. I went to my doctor about having so much pain in my bones and all over my body/ hands and doc tells me after our talk and test that I have the worse case of Chronic Fibromyalgia. The pain of fibromyalgia is profound, chronic and widespread. It can migrate to all parts of the body and vary in intensity. FM pain has been described as stabbing and shooting pain and deep muscular aching, throbbing, and twitching. Neurological complaints such as numbness, tingling, and burning are often present and add to the discomfort of the patient. The severity of the pain and stiffness is often worse in the morning. Aggravating factors that affect pain include cold/humid weather, non-restorative sleep, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety and stress.Pain inside the bones hurt so bad and I now know some of how Karl (hubby) feels when his cancer bone pain kicks in. I feel so sorry for him as he now has Chronic Fibromyalgia along with his bone cancer just his luck. Karl has lost so much weight now and is having a hard time keeping his blood counts up is why he has to get packed red cells and platelet 2 times each week and there not enough to bring up his counts. As of for now Karl is working hard to get this house done so we can sell it and move back to Texas. I believe once I have Karl in TX. with better cancer help than he will ever get here in Fl. Here in Fl. if one don't have big bucks they will not help you or take time out of there day to help or talk to you about cancer. I'm from Texas where the Doctors take time to help others and care for people as they do there own family not turn there heads due to being on medicare like doctors here in Fl do. Karl is sticking to June 30th to be all done with house and ready to move out of here on July 7th back home to NE Texas. Thanks to fibro I can't crochet , loom or touch my yarn now due to it burning my hands and so much pain in my hands and body to play with my yarn that I miss so much. Hugs have a great day/ nite.

Monday, March 22, 2010

Update on what my Dear friend Darlene Rambo has been doing. As you know Darlene puts what is in her head into what she is crocheting. Darlene and I have both been learning how to read patterns and as you can see from the pics below shes doing a great job. In the 1st pic Darlene crochet this very nice throw for her son with the help of Mikeyssmail from youtube how to step by step videos. (Crochet - 1 Catherine Wheel Stitch - Starting A Blanket) at http://www.youtube.com/watch?v=KePzH8en6g0&feature=fvw
This gray one was made for her son.









Two of many purses Darlene has made.(Great Job)





I love the way Darlens used all these colors to make this throw. This is absolutely magnificent Job on this throw Darlene you go girl.

















Look at all the slippers she has been crocheting up. (Someones feet will be so warm haha.)



Monday, December 7, 2009

Crocheting Fun






Hi! I'm making up for lost time with my crocheting. This week I have made Hats, a shrug with matching hat and a rug for my hubby Karl. Karl's still been in alot of pain this week and is still getting weak. It's hard to watch him struggle to get dressed and not to fall. Karl's doing great this far on quiting smoking. As of Wed. morning around 2am he smoked his last cig. Here are some pics of what I have made this week without a pattern. All was just made up as I hooked it.








Wednesday, November 18, 2009

Back to crocheting!!!! Yes!!!!!!


My 1st Crochet hat made by me Too Kool lol


Get my cube or Create your own









Hi! Sorry For not posting before now. As of Nov 09 I'm back to crocheting after 4 surgery, and healing time, I'm getting back to my crocheting if and when my hands let me. I go back to my hand/ wrist doc Dec 3, 09 so that we can talk about doing surgery on my right (good) hand. Doctor said he wants to work on my right hand so that it will be well enough for me to use it so he can try and finish up the surgeries on my left hand. It has been one long year with out being able to play with my yarn. As for my husband Karl he's still hanging in there and trying to get as much work done on our home as he can, so he can go in for a transplant at the cancer center up in Tampa, Fl. Karl has lost a lot of weight so I put him on power maxx hydro micronized protein mix it works as long as he drinks 3 or 4 glasses a day and works or moves around no matter how bad he is in pain or how tired, he still needs to keep trying to move as much as he can. Thanks to this drink mix hes not losing weight as fast now and it taste good. I crocked Karl a coster for his coffee cup and I made up this hat to wear fishing this winter here in Fl. it's my 1st crochet hat that I have made. It was so much fun making it even though I messed up on it some. My left wrist did not like me too much for pushing it so I could get done with the hat then rest my wrist lol. It's still hard to loom yet but hope I get bk to looming soon. As for my dear friend Darlene shes been crocheting all kinds of kool things even send me some bags she made. Oh my I will have to post a pic soon of something Darlene made using a new stitch she seen, and she did a great job on it as always.




I made this up myself so the res no pattern and my dear friend Darlene was on the comp chatting with me as I worked on it.

Tuesday, June 30, 2009

Good & Bad News

The good news is that July 8 I will be having another big surgery on my left hand. Doc said he will go in and fix everything he can in my wrist/hand that way don't have to go back in there anymore. I will be in a cast for 6 to 7 weeks. As soon as I get out of my cast he will work on my right thumb and that wrist. So I should be back to looming by Christmas. Now for the bad news. As of 6-26-90 we just found out that Karl (my husband) has Primary Myelofibrosis also called Agnogenic Myeloid Metaplasia (AMM) No Cure, can only be slowed down some. This occurs when the bone marrow produces too much collagen or fibrous tissue in the bone marrow. This reduces bone marrow's ability to produce blood cells. As of Monday 29 Karl started his first day of chemo using pill form Hydroxyurea -- may control complications, such as enlargement of the liver and spleen, reduce the number of white cells and
platelets in the blood, and improve anemia. We will see it this chemo helps Karl's liver and spleen as of now Karl's spleen is the size his liver would be if it was at normal size. Keep us in your prayers. Hugs

 
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