Here it is Saturday again. I wanted to go out shopping but knew that I would be in so much pain that it would be not be worth it. It's also really cold out today, -17 with the wind chill and the cold always makes my pain worse. The changing weather makes my pain worse too. I can always tell when there is a storm or a major change in the weather imminent because my pain gets intolerable and pain medications don't seem to work.
But I really wanted to get out today, see the stores with the Easter decorations and see all the Easter candy and stuff. It was just not to be. Kelly took her mother shopping and I know they don't mind if I tag along but I would have just been a burden and they wouldn't feel comfortable to go into the stores and leave me in the car with a book or magazine. I am sure I would have been content but then there is the awful cold. So, instead I have been home alone all afternoon. Got some cards ready to be mailed, had a couple of Ensures and some Jello but nothing solid. My esophagus is going into such spasms every time I try to eat solid food and the pain it causes in my chest is just not worth it. I am going to have a motility study done April 1 and then the specialist will discuss it with the surgeon and they will decide what is to be done to repair the damage. I'm sure not looking forward to that surgery! It is major chest surgery (last time they actually removed one of my ribs to get to the esophagus) and I'm not as young as when I first had similar surgery. It is so hard to give up solids because just as soon as you tell them they start telling you about some scrumptious new recipe or something.
I am feeling so very tired right now. I know that it's the pain, it just drains me of all energy and leaves me feeling like an empty shell. It hurts everywhere, my back, my shoulder blades, my arms and hands, my legs and feet are like huge lumps of painful flesh. They don't even feel like legs and feet, just long, painful appendages sticking out of my lower body. My daughter is bringing my grandchildren in for me to babysit for two hours and I just don't know how I will do it if Kelly doesn't get home by then. I love them so much but I am SO tired and hurting SO much. How can I say no? They have no one else to look after the boys and I know that so I do the best I can.
I always wonder how other grandmothers do it.
Saturday, March 22, 2008
Friday, March 21, 2008
Another Incurable Painful Disease
Since my initial posting in this blog, I have had an almost continuous 'bad' spell and have not been feeling up to posting. Unfortunately, this is exactly what I had intended this blog to be - a way for others to hear and understand what the 'bad' spells are like for someone who lives with chronic pain so I will make every effort not to withdraw from the blog when I am in pain.
March 11 I found out that I have yet another incurable, painful condition. I left that doctor's office feeling so defeated. I already have so much on my plate and it is just so unfair that now I have even more piled on. I now have lymphedema in both of my legs, a condition that occurs when the lymphatic system fails to circulate (or drain) the lymph fluid from a limb. My legs have been swollen and covered in a painful rash since May of last year and it took until now to find out why. Apparently, the creams, prescription creams and ointments and even the Polysporin I put on open sores were being pulled into the "cesspool" (the doctor's word not mine) in my legs and they were causing an allergic reaction. In other words, the rash I was so worried about was being caused by the swelling and not the other way around.
The following is a description taken from eMedicine.com
"Lymphedema is a notoriously debilitating progressive condition with no known cure. The unfortunate patient faces a lifelong struggle of medical, and sometimes surgical, treatment fraught with potentially lethal complications.
The underlying problem is lymphatic dysfunction, resulting in an abnormal accumulation of interstitial fluid containing high molecular weight proteins."
The swelling was so bad at times that I could not bend my knees or move my feet. I could not find a shoe to fit on my foot (or boots since it is winter here). Sometimes, my feet looked like blobs with fat sausages stuck in the top. There were folds of skin created by all this swelling and the skin was beginning to break down in these creases. It was so painful at times that all I could do was cry. Oh, I kept my legs elevated as high as possible. I took the fluid pills (which I now know are contraindicated) and the antihistamines faithfully, never seeing any measurable result.
Since I already have RSD and fibromyalgia in my legs, the pain at times was so intense it made me hold my breath. Now, all of a sudden, I had a "new" kind of pain. This pain seemed to go to my bones and walking was sometimes just simply physically impossible. The bottoms of my feet were too swollen and sensitive for me to put them on the floor. I am so thankful for my wheelchair because I don't know what I would do. The chair is manual and I got it when I was about 70 or 80 pounds lighter six years ago so it's not the best fit but it's better than trying to walk.
Isolation, which is one of the harder things about chronic pain, was even worse because before I could usually make it to the car to visit or drop in on friends when my pain allowed. Now, just as I was beginning to come out of my shell a bit, another heavy blow drove me back inside.
It all seems so endless - the pain that will finally ease when the medication takes effect but returns like clockwork when the time for more medication comes close (usually 2 1/2 to 3 hours). The broken plans because I just couldn't get dressed or because getting dressed would take every last bit of strength. The sunny days spent in the apartment dozing off and on with the pain meds. I had always loved to be out on a sunny day, loved the feel of the sun on my face. This week, after days and days of freezing rain and snow they forecast a sunny, mild day. I was really looking forward to the idea of just getting outside and sitting in the sun. What happened when the day came? I woke up in horrific pain and had to take extra pain medication so all I did was cycle between sleeping and being aware of the pain until the day was gone and the sun with it. I just wanted to cry because I knew there wasn't another sunny day forcast for several days.
And what about the endless, heart-wrenching broken promises to my grandchildren? They say they understand that Nanny is not well and some days my legs just don't work for me, but they range in age from infant to 10 years old and I know the younger ones don't understand because they are much too young. It breaks my heart and makes me very angry every time it happens because I'm letting them down. I enjoy my grandchildren and they sure do bring moments of pure joy when I play or cuddle with them. It hurts me that I have to limit my time with them.
Easter Sunday is coming up and my grandchildren are expecting me to come for the day. I am looking forward to it but trying not to think about it much in case I have to decline the invitation at the last moment.
I wish my readers a Happy Easter and if you are a healthy person, please don't take it for granted and seize every moment you can. For those who suffer as I do - I wish you a day of minimal physical discomfort and maximum joy.
March 11 I found out that I have yet another incurable, painful condition. I left that doctor's office feeling so defeated. I already have so much on my plate and it is just so unfair that now I have even more piled on. I now have lymphedema in both of my legs, a condition that occurs when the lymphatic system fails to circulate (or drain) the lymph fluid from a limb. My legs have been swollen and covered in a painful rash since May of last year and it took until now to find out why. Apparently, the creams, prescription creams and ointments and even the Polysporin I put on open sores were being pulled into the "cesspool" (the doctor's word not mine) in my legs and they were causing an allergic reaction. In other words, the rash I was so worried about was being caused by the swelling and not the other way around.
The following is a description taken from eMedicine.com
"Lymphedema is a notoriously debilitating progressive condition with no known cure. The unfortunate patient faces a lifelong struggle of medical, and sometimes surgical, treatment fraught with potentially lethal complications.
The underlying problem is lymphatic dysfunction, resulting in an abnormal accumulation of interstitial fluid containing high molecular weight proteins."
The swelling was so bad at times that I could not bend my knees or move my feet. I could not find a shoe to fit on my foot (or boots since it is winter here). Sometimes, my feet looked like blobs with fat sausages stuck in the top. There were folds of skin created by all this swelling and the skin was beginning to break down in these creases. It was so painful at times that all I could do was cry. Oh, I kept my legs elevated as high as possible. I took the fluid pills (which I now know are contraindicated) and the antihistamines faithfully, never seeing any measurable result.
Since I already have RSD and fibromyalgia in my legs, the pain at times was so intense it made me hold my breath. Now, all of a sudden, I had a "new" kind of pain. This pain seemed to go to my bones and walking was sometimes just simply physically impossible. The bottoms of my feet were too swollen and sensitive for me to put them on the floor. I am so thankful for my wheelchair because I don't know what I would do. The chair is manual and I got it when I was about 70 or 80 pounds lighter six years ago so it's not the best fit but it's better than trying to walk.
Isolation, which is one of the harder things about chronic pain, was even worse because before I could usually make it to the car to visit or drop in on friends when my pain allowed. Now, just as I was beginning to come out of my shell a bit, another heavy blow drove me back inside.
It all seems so endless - the pain that will finally ease when the medication takes effect but returns like clockwork when the time for more medication comes close (usually 2 1/2 to 3 hours). The broken plans because I just couldn't get dressed or because getting dressed would take every last bit of strength. The sunny days spent in the apartment dozing off and on with the pain meds. I had always loved to be out on a sunny day, loved the feel of the sun on my face. This week, after days and days of freezing rain and snow they forecast a sunny, mild day. I was really looking forward to the idea of just getting outside and sitting in the sun. What happened when the day came? I woke up in horrific pain and had to take extra pain medication so all I did was cycle between sleeping and being aware of the pain until the day was gone and the sun with it. I just wanted to cry because I knew there wasn't another sunny day forcast for several days.
And what about the endless, heart-wrenching broken promises to my grandchildren? They say they understand that Nanny is not well and some days my legs just don't work for me, but they range in age from infant to 10 years old and I know the younger ones don't understand because they are much too young. It breaks my heart and makes me very angry every time it happens because I'm letting them down. I enjoy my grandchildren and they sure do bring moments of pure joy when I play or cuddle with them. It hurts me that I have to limit my time with them.
Easter Sunday is coming up and my grandchildren are expecting me to come for the day. I am looking forward to it but trying not to think about it much in case I have to decline the invitation at the last moment.
I wish my readers a Happy Easter and if you are a healthy person, please don't take it for granted and seize every moment you can. For those who suffer as I do - I wish you a day of minimal physical discomfort and maximum joy.
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