A New Grandchild Arrived Feb. 10

Photos: My five grandsons: Caleb 5, David 4, Simon 18 mths, Jacob 11 and Daniel 2 1/2. Grandsons David 4, Daniel 2 1/2 and new baby Rachel.

My daughter, who has five boys, finally got her baby girl. Rachel Amanda was born February 10 at 3:25 p.m. weighing in at a whopping 12 lbs. She has dark hair and eyes (so far anyway) like her oldest brother, Jacob. I really hope that they decide it is time to stop but I'm afraid that my daughter wants to have more. The problem with that is the fact that when they need someone to look after the children, I am the only one they can call.

My family doctor read me the riot act this time because she told me when Pamela had Simon that I was not well enough to look after so many children for days at a time. A few hours maybe, but no more of this 24/7 babysitting. Pamela started making trips to the hospital three weeks before the baby was born so I was at her place, whichis very small, almost the whole three weeks. It's been a week since I came home and I still haven't really recovered. When I am there I cannot take extra pain medication for the pain because I need to be alert at all times. I cannot take my power chair to her place because I have no way to get it there so I use my manual chair but there isn't room to use it everywhere so I end up walking (if you could call it that) to get a lot of things done. I also have to lift the youngest ones in and out of their cribs.

At the end of a typical day with the children I am in such pain that it is hard to focus on anything. I drag myself to bed, dead tired, and fall alseep right away. The problem is that about 2 to 3 hours later I have to get up because the pain wakens me. My body gets increasingly stiff and painful with each passing day and yet I keep pushing. I think I get to a place where I become numb to the pain as a survival tactic. Of course, when I finally did get home my body and my mind flooded me with my true condition - terrible!

I can't write any more today, it is too painful to sit here and I need to get out of my chair and into my recliner with my swollen legs up. I am so grateful that I have a doctor who understands chronic pain and will prescribe pain medication for me. I know many people like me who have doctors who just refuse to accept chronic pain as real and won't prescribe anything and, in fact, they are sent for psychiatric help! Unfortunately, there are more of them than I care to think about. Thank you for reading this, please leave a comment.

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.

Freedom on Wheels!

I have had my power wheelchair for about a mont now and I couldn't even begin to describe the tremendous difference it has made in my life already. I no longer have to have someone tke me to every appointment because now I can go myself as long as it is within a reasonable distance or I can get there by bus.

Now, if I want to for coffee I can - I don't have to ask Kelly to go which would mean she might drag herself to the car regardless of how much pain she was in, just to fulfill my wish. Now I can go and get her a coffee! I can pick up milk or bread when we need it. I can browse around the mall - something I haven't done since 1990 when I was first injured. The list of freedoms I have now would just go on and on but I'm sure you can imagine how wonderful ithas been.

They are still making adjustments to the chair for optimal comfort and functionality but they can come here to do it and it doesn't take my chair away from me.

My pain has not improved at all. My bladder pain has become so bad that I try to avoid public washrooms because I can't help but scream sometimes. There was one day recently when I said afterward that having a baby was less painful than having that particular 'pee'. If the lining of my bladder is sufficiently irritated the pain as my bladder is trying to empty completely can be beyond description. It doesn't take much to irritate it either, certain food and especially drinks will do it every time. For the most part, I am able to avoid these but some are favorites and sometimes, well, I just HAVE to have a large Ice Capuccino from Tim Hortons or a can of Diet Coke. I pay dearly for the indulgence and sometimes it is even worth it.

My lymphedema is causing some worry because my skin isn't in very good condition but I have to wear compression stockings and my skin can't really 'breathe' through them. Getting an infection in the trapped lymph fluid can lead to dire consequences. At the very least, the infection is confined to the fluid, at the very worst - the infection enters the bone and amputation is the only option. Skin breakdown can also lead to severeinfection and amputation so you can imagine that I notice every little spot and every bit os soreness.

I find it so hard to sit in one position so I have to get away from the computr for a while. Please leave a comment - I would like to know if anyone reads this.

Feeling ?Better????

The last time I posted I was finally starting to feel better from having double pneumonia. That did resolve but then I started having chest pain. My doctor has prescribed Advair for me but I haven't been able to get it - have to wait for "special authorization" to cover the cost.

This chest pain seems to be related to anxiety - at least most of the time. I've had the blood tests, ECG and Chest Xray and have an appointment with a cardiologist September 8th. I almost think that this is related to my esophagus but I'm not absolutely sure of that. With all this excess weight (70lbs) it wouldn't surprise me to find out my heart is struggling. Chronic pain is very hard on the heart and this is why doctors are willing to prescribe pain medications - to reduce the strain from dealing with constant, unending pain.

I don't know what is worse - the pain or the disbelief you see when you tell someone about it. You can just see them thinking "Pain! She would probably be fine if she lost all that blubber. She's just using pain as an excuse to be lazy." Even when you come home from the doctor with a Rx for pain, they don't believe it. They just don't want to believe it because then they would have to be at least somewhat sympathetic.

I am still anxiously awaiting my power chair which will give me a lot more freedom to get out and about. I'm told it should only be two weeks but I thought that at the beginning of the month. I'm just worried that once I have the ability to get out and about, my partner will feel left out and it will put distance between us both literally and figuratively. Hopefully, after twenty years we are strong enough to withstand the change.

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?

Depression Rears its Ugly Head

I hate to say it, because I don't want it to be true, but I think I am getting depressed. For 9 days now, I have not ventured out of our apartment. I sleep a lot during the day and stay up all night. I realized that I have been procrastinating with everything. Avoiding things that must be done or taken care of. I got our budget all messed up this month and now we have a week still left this month and we are beyond broke. How did I let things go like this? Usually, I am right on top of the budget and things we planned to do.

Depression is one of those unfortunate facts of life for people like myself that are suffering from chronic pain. The last couple of days weren't so bad for pain but before that the days were a blur of nothing but pain. I know that the depression is just a reaction to the continuous pain and I have to work hard to stop it from taking hold of me when the pain eases. I just don't have any fight in me this time, no energy to even pretend. My Mom was here today and it was just not in me to pretend. I finally have my Mom come for a visit (the last time was when we had moved here) and I was barely functional. I really hate that about myself.

We are supposed to go out to Pamela's tomorrow for Jacob's birthday a little early so that Pamela and Efrain can use the pick up truck to come to town and pick up Kelly's bed from my Mom's and bring it over here and then take the old beds to their place. My old single bed (I just got a hospital bed) is going to Daniel and they are taking the headboard and footboard from Kelly's bed and, last but not least, Kelly's bed can be put out for their garbage pick up. We can't put anything like that out in the garbage here in the city. The problem is that I don't know if I will be able to make myself go out. The plan was for us to look after the children while they came in to do all this and I just can't see me having the patience to look after all five boys! Even with Kelly's help it just looks like such a daunting task.

My upper back and hips are really hurting and so are my ankles and hands - it's starting to spread through my body. I have to leave for now. Take care everybody and I hope your day will be painfree. PLEASE - check out this website because I found it very helpful and even very thought provoking - http://www.beliefnet.com/painmanagement/