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/

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.

I'm Back!

I Here it is the middle of May already. We did have a nice Easter and I was able to go out and spend time with my grandsons. Near the End of April my wheelchair seat broke and the Extra Mural Hospital nurse who was in to bandage my legs contacted the Extra Mural Occupational Therapist. She came to see me the next day and within a few days I had a power wheelchair for assessment. I was fortunate enough to have it for three weeks! We tried a couple of different seats and backs before we found the right fit for me. In the meantime, my whole world changed. Since I didn't need anyone to push my wheelchair, I was free to come and go as I pleased and became quite confident in a very short time. It made things so much easier for Kelly, she didn't have to go out if she didn't feel like it and she was no longer responsible for every little errand. When the children came to visit for the day, I was able to take them for a 'walk' over in King Square and the Loyalist Burial Ground Park. After that, we went through the City Market and they each bought a treat and then we headed back to the apartment. It was the first time I ever took my grandsons for a walk. It may have been ordinary to them but it was like a miracle to me. I was soon going all over the place, sometimes with a friend here in the building and sometimes alone and it was absolutely wonderful.

On moderate pain days I could still go out and I was even able to take myself to one of my appointments for an ultrasound when Kelly wasn't feeling well. I can hardly find the words to express how wonderful it was to have a wheelchair that would take me anywhere I wanted to go (up to 25 miles on a full charge).

The first week I had the power chair I also had pneumonia and bronchitis and was really sick. They came and took it back this past Thursday and I was sad to see it go but ever so grateful that I had it as long as I did. It will take anywhere from 4 to 8 weeks to get my own chair and I can hardly wait.

I was able to get the stockings that the doctor prescribed for me to control the swelling from the Lymphedema. I got the over the counter ones (at $25/pr) and if they work well, which they seem to be doing, then I won't have to get custom fit ones which are $110/pr I have to have help to get them on but once they are on they are quite comfortable and they have certainly kept the swelling down a lot. They have also reduced the pain I was having and it only occassionally gets to the excruiating point.

After getting past the pneumonia and bronchitis I thought I was home free but I spent a day with the kids and they were almost all feeling sick. Guess what? They shared it with their dear old gran! I am just getting over stomach flu,

My daughter, husband and children made a trip to Cuba where her husband's family is. It was nerve wracking for us back at home, praying that nothing would happen to them. Her husband fled Cuba as a political demonstrator through the US Embassy when he was much younger and we were so worried. They had a good time but found the heat hard to take and all arrived home safely a few days ago.

As you have probably figured out, I am having a good day today and have for the past few days but they are forcasting rain so my pain will probably flare up any time now. I have to take advantage of these good days. I may go and visit my Mom today.

Hope that all who read this are also having a 'good' pain day.

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.

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.

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.