ALWAYS turn your power chair OFF when getting out!!!

The holidays this year were a little better than other years in some ways with the exception of my stupid accident. As a rule, when I get out of my power chair for even a moment I turn it off and this story will tell you why this is so important. I had just arrived home from a dental appointment and was in a hurry to make it to the washroom. I stood up to take my coat off, without turning off my chair, and my coat caught on the controller of the chair, moving the chair forward. As I was standing sideways, the moving chair was pinning me between it and a counter and causing my legs to bend sideways in a completely unnatural way, under the chair. Caught up in my coat, my screams brought my roommate running and she managed to turn off the chair but not before I heard the tell-tale "pop" of a breaking bone.

A trip by ambulance to the Emergency Room revealed that I had a hairline fracture and torn ligaments and tendons in my left leg and strained ligaments in my right leg. Both legs swelled horribly and were so sore that putting the absolutely necessary compression stockings on was a terrible experience for me and, even more so, for the person unlucky enough to be elected to help get them on. They were necessary to keep the swelling, and the pain, from getting out of hand but that didn't make it easier to tolerate getting them on. At one point, my partner was trying to get the stocking around the heel and her knuckles dug into the flesh around my ankle and this caused an involuntary scream on my part that nearly gave my partner a heart attack.

My legs are better now and x-rays this week show that everything is healing well. There is an ulcer on my right leg that is getting larger instead of smaller but so far it is not painful and I can tolerate having the stocking over it. The doctor said it is imperitive that I wear the stockings and maintain pressure at the site of the ulcer to keep the lymph fluid from developing an infection that could spread throughout my body with dreadful consequences.

Although the holidays were more painful than usual, I enjoyed them even more than usual. I spent Christmas Eve day from about 4 p.m. until Christmas Night around 9 p.m. at my daughter's home. My grandson's are just the thing to make anyone forget their pain, if only for a few minutes. They range in age from 17 months to 11 years and are a barrel of fun. Having them to distract me from my pain is better than any drug on the market.

What Am I Doing Wrong?

I had hoped that others would read my blog and chime in with comments that would be helpful to me (and to other readers). Unfortunately, there hasn't been one person view this blog let alone leave a comment. I suppose it is useless to ask this question since it is unlikely it will be seen by anyone.

As an update - my doctor put me on a second course of antibiotics and five days of steroids and I am finally beginning to feel better. I don't feel as weak and my breathing is much easier (I have COPD). I just have to remember to use my inhalers every day. When I'm feeling well, I don't use them and the Respiratory Therapist told me that I should and so did the Doctor.

My pain has been different for the past two days. Imagine what if feels like to lay your arm on the table when you have a really bad bruise. That will give you an idea of what it is like for me but the difference is that the 'bruise' is all over my body. It even hurts to sit back in a chair. because my back feels like one HUGE bruise. It doesn't matter whether I sit in my wheelchair, on the couch or go to bed, it hurts for my body to touch anything.

I do hope someone will read this and offer some words of encouragement. I sure could use them.

And the PAIN Continues

Hello - I would like to say that my pain has been better since the last time I wrote, but that would be a lie. I am trying to cope with double pneumonia on top of coping with the continuous pain all over my body. The doctors tried to convince me that it is Fibromyalgia but I no longer believe that. I believe that it is the RSD spreading throughout my body because of the sensitivity to touch I have. The pain becomes so severe that I don't know how to get comfortable, I take clothes off so they won't hurt my skin and get cold, put them on and get too warm. I am so weak and discouraged right now. How many years do I have to live like this? How many years CAN I live like this?

What's Happening in June

We have had some beautiful weather this month and for the first two weeks I was able to get out and enjoy it. I still don't have my power chair, which would make it easier to get around and even go down to the boardwalk. The compression stockings that I purchased last month are doing a really good job and the swelling is down a lot in both legs. The skin rash and inflammation isn't getting any better though.

The past four days have been quite bad. I have been little more than a vegetable because of the pain. Right now, the pain medication is working fairly well but I won't be able to sit here much longer. I have just been drifting in and out from the medication. Sometimes I start to wake up and the very first thing that I am aware of is pain screaming from my hands, hips, legs etc. I have to force myself to get up to a sitting position and then I reach for my pain pills and pray they work quickly. It may take hours before I can move about easily and this often means cancelling plans. I hope I can get out today but the way I feel at this moment that just doesn't seem likely. I need to take some pain pills and maybe an anxiety pill because it's getting hard to accept that I may be stuck inside again today. It looks quite cloudy out so maybe I'm not missing anything?

I just can't type any longer. I really pray that some one will notice my blog and - maybe - post some encouraging comments for me. In any case, that's all I can write today.

Saturday's Woes

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.

Coping with Pain Every Day

Chronic pain, particularly neuropathic pain, can be completely disabling. I suffer from several sources of chronic pain; interstitial cystitis (a painful, incurable bladder condition), RSD (Reflex Sympathetic Dystrophy), and Fibromyalgia. Any one of these can be in remission but it never happens that all are in remission. I had to give up a job that I really enjoyed because I could not work in pain and I could not work on the pain medication. Losing the ability to work was the most difficult part of my experience thus far because working, and striving to excel at my work, was my way of maintaining good mental health. Chronic pain can, and often does, lead to debilitating chronic depression and depression is often part of a vicious cycle.

In the beginning, when one is going to doctor after doctor and getting no real diagnosis that accounts for the severity of your pain, one often feels as if you are losing your mind. You ask yourself, "Am I creating this?" "Do I really subconciously want to suffer to get attention?" and so on. It isn't until you get a doctor who believes that chronic pain is in itself a disease, and who validates your pain, that you can even begin to cope with it.

I hope to continue to explore the various coping mechanisms that patients use, research about treatments and sharing my own experience here in the hope that it will:
A) Help someone else to cope with their own pain.
B) Increase awareness of the devastating nature of chronic pain.
C) Learn new things from others who add their thoughts and experiences.