Chronic Pain Lifestyle

HOW DOES YOUR GARDEN GROW?

It's garden beginning time for many of us, especially in the South. How and what to plant was confusing for me. I was so much wanting a container garden on my patio. With just a walker I couldn't even go into the yard at all and my husband is a  just let whatever grow grow until the neighbors complain. Then use the riding mower and weedwhacker. We have huge trees so limbs always need picking up but they love doing it at their young ages. But the 12 year-old has determined that it is WORK now. Due to climate change we cannot get anything to grow in the front yard except 3 huge trees over 30 years old. They shade the entire yard. Last summer the four grandkids did manage 9 Aloe Vista plants and I tried to repot my 2 indoor vines I'd had since Mother died in 1997.

One of my sitters did know about all that stuff and I have a bucket of daffodils now in my front yard. Not bad with all the cold, rainy spring we've had. However the money ran out to grow a patio garden but that's OK cause broken limbs (on me) stropped it.

But my puny indide one is growing great! I have a long but narrow bay window just where the dinnet sits so it gets sun all day. When it came time to bring the vines in my largest one--don't even know his origin--had to have a table all it's own and it is grown up past the curtains and started toward a bookshelf.I have put  vases from previous generations around it. The morning light is great. This is the original plant. I won't bore you with my indoor garden anymore except to say I have a sweet potato vine also. I don't know their life span though.

I wish I was growing like my indoor plants---healthy for now

Wanda

What Happened to Part 2?

Don't ask me because I typed on someone else's computer disc who was supposed to post it on my computer. Some times mistakes are better, others are worse. We all survived the storm but not without mishap. The real moral here is don't throw someone in the lake and expect them to automatically ski and don't ignore the weather signs, especially our health ones.

So many things have happened to me to bring me to this state of health and life itself that I can't write about them all. You you would be bored to death and so would I (not literry). For those new to my  world I am an older woman with a wonderful husband, kids and grand kids. I've had back  problems ever since the ski party at about age 12. Then I was given a myelogram with pantopaque which showed I had an "extra" vertabra and would need a fusion. My parents said no and I made my way as best I could because it never occured to me that others didn't hurt like me. I wasn't medicated either. Of course I didn't have AA then either.

I'm limited in time so I'll just say that I got  a "pain pump" in1989 which lasted until 2006. I got the new pump but it just didn't sem to work. We had left the old cathaerin in because it tested OK. We finally did find out it was the catheter. Time for a new one. It should have taked 45 minutes but it took 5 hours because it had "rotted" and broken and was moving out into my body in small sigments. It could have been fatal had he not gotten all those litle bits.

However the surgery has left me "spastic"-- pressure inside the spine instead of outside like AA. I have a spinal cord injury and am paralyzed from T-7 down. Paralyzed in this case doesn't mean I can't move my legs some in bed or chair but if I stand up my legs will not move at this point.

It's time for dinner and a bath which is not a pleasant experience at all.

More to come in this saga of just being a patient now.

Wanda

The River Party (part 2)

Download wanda.part 2-4.doc

The Ski Party (Part 1)

After Colin gave me my very own by-line I suddenly dropped out of sight.  I have sent in a few "Wanda's World" articles telling a little about what happened in my world but I don't think they made much sense - not even to me.  But for a come back let's go back in time to the early 60's (yes, I'm that old).

We live in what's called the Tennessee River Valley, near a large lake between to hydro-electric dams.  This area is ideal for lots of fishing and water sports, but there is also a lot of large barge transport traffic.

The following event happened to me and my extended family during an outting on the lake.  Early one Saturday we met for a family day of fun on the lake, several speed boats for skiing, and several fishing boats to gather the goods for a fish fry.  This was to be my first day of "learning to ski" even though I wanted nothing to do with getting in the water.  I was happy just to ride and be a spotter.  But my dad and uncle dragged me into the water, pulled me out until I was supported by my life jacket, and attached the skis to my feet.  Then the "go" signal was given.

I was, and am, deathly afraid of having no ground under me, not being able to feel my feet on the firm and solid.  I was scared of what might be in the water with me; 50 lb. catfishes, snakes, etc.  I just did not want to do this.  I'd hated swimming lessons too.  No water over my head!  "Coward" of the family!  This could not be since I was the oldest of the grand children and had an example to set.  "GO"

So off down the river I went, for maybe 20 feet, feeling the whole time as if my body was being ripped apart, but afraid to let go.  I never got up on the skis, and I have been in severe back pain ever since.

A few months later the PE teacher in school made things worse, but that is for part 2.

(Written by Wanda, posted by Lee: Wanda is in rehab recovering from a broken knee:  no more skydiving)

I'm Up Again

Hi Friends,

It's been a long time since I've been able to sit at the computer or any place except in  my bed. In fact I still have to sit or lay in the above mentioned and it seems it might be a permanent condition. Since June 6, 2006 and this  past Monday I've had three surgeries on my back due to the pain pump I originally had implanted in 1989. I won't go into all the details now but I do want to let you know I am finally doing some better. The new pump had to be moved to a new site due to infection.  Pumps can cause serious problems as I've learned at a heavy cost.

But don't give up hope, yet. For further information on this subject look under the  "Pain Pumps & Me" articles I''ve posted previously.

Right now my goal is to get out of bed by myself and into my powerchair for an hour or so.

Love to all,

Wanda

Pain Pump, #10

        I won't speak for Wanda.  She does that well enough on her own.  After a protracted recovery from yet another surgical proceedure, I'm proud to offer you Wanda's first post since she's been able to fill us in.  Thanks Wanda, the floor is your's.

It seems like it’s been ages since I started my articles about life with my pain pump. In reality it’s only been a little over a year. Now I have one more to add to the list. I think this is number 10.

Here is a brief outline of the first 9. I got my first pain pump in 1989. It did not have any batteries and wasn’t programmable therefore it lasted until 2006. While I had no problems with the pump itself, I did have a problem with my first catheter. It broke into two pieces and had to be replaced a couple of years after it was originally inserted. Catheter problems are common and are usually easily fixed.

Since I have adhesive arachnoiditis in the thoracic and lumbar regions of my spine my pain doctor didn’t want to have to put in a new catheter if the old one was still good. Testing indicated that the sixteen year old catheter was still just fine. When I got my new pump in August 2006 he just spliced into the old one and that was that. Only in reality it wasn’t “that” at all. I never did get pain relief with the new pump. At first it seemed that I did but it didn’t last very long. We changed medications in the pump. That made things worse. We added oral medications which helped some but still the pain was getting worse by the hour or so it seemed to me. The last thing to do was to check the catheter again.                                                             

The pump has an access port for refills but it also has one so that just the catheter can be checked out with a dye test. This is what we did. It showed that my catheter was leaking.  We set the surgery date and I was so happy to know that I would most likely get my pain relief back to a much better degree than I’d had in the two years since the old pump had started to fail.

On the day of my surgery my doctor came to pray with me as he does with all patients who believe in the power of prayer. I looked at the clock just as the anesthesia started to take control. It was 11:20. The surgery was only supposed to take about 45 minutes followed by a short recovery time. I would be home by bedtime. There would only be minor pain for a few days.

My next memory is of momentous pain. I looked at a different clock that said 5:00.  I was being transferred to the bed in my room. Suddenly I got the worse muscle spasm I had ever had up to that point in my life. It started under my arm pits and moved down my entire body and didn’t end until my toes were straight out yet being pulled under at the same time. I screamed!!!!

What was happening to me? These spasms would let up for a short period of time then begin all over again. I could barely move my legs. I could barely move at all except during those muscle spasms and I had no control over those. I was told that pain medications would not help this type of pain because it is muscular. Anyone who has had a muscle cramp in the calf of their leg knows you have to “work” through it to get it to loosen up. But after a few hours of these I told the nurse that they were making me sore and a pain pill would certainly help that. She came back with 2 Percocet. They did help.

The only way I can think of to help describe these “spells” is to compare them to labor pains. They start out easy and slow but build up to the point where you think you can’t survive the pain another second. Then they gradually go away only to return in a short time. Enough about the pain part.

The second day after surgery I was able to walk in the hall so we thought everything was clearing up. We were wrong again. I lost control of my legs. No more walking for me. The pain doctor didn’t know what was wrong with me and neither did the neurologist. None of the nurses had seen a case like this. Baclofen was put in the pump and I got better to some extent and was discharged. The neurologist added Zanaflex with the pain clinic adding Klonipin.

It’s taken all this time but I can usually get up aided by my walker. After that it’s minute by minute. Every day is an adventure with what can I do today or not do today. I’ve done some serious damage to the interior of the house which won’t get fixed anytime in the near future. The kids and I tried flowers but the drought is just too bad for them to survive except the Aloe Vera plants. I can’t even get the outdoor Ivy to root in a different location. This Ivy is not easy to get rid of. I’ve tried for years to get it off our chimney but it comes back. Now it has started across the yard on our fence. Now I’m trying to root it in water in the window. I won’t give up because this stuff grows in all seasons.

I guess I’m like the Ivy. I just won’t go away. However I may have trouble growing new roots.

So now we get to the “good” part. What went wrong with that simple surgery to leave me to live the rest of my life mainly in a wheelchair and suffering muscle spasms at the oddest times? My old catheter had fallen apart and had to be removed in small sections. It was left to run through my body any old way before entering the spine and being threaded to the place where the catheter tip entered the spinal fluid. He had to remove every part of it because it could get infected or a piece could migrate to a major organ. That old catheter was deadly if left in me. He got all but one tiny piece. It was about 7 feet long. This left me cut from the pump all the way around to my spine. OUCH!!

Now the new catheter had to be put in. He wanted to get it as high as possible to give me maximum coverage so he tried to thread it as high as possible. When he got to the T7 area it wouldn’t go any further. He told me he tried for an hour to get it past T7 but nothing worked. At this point he stopped and did a myelogram. He discovered that I have an AVM in the spinal cord at T7 and I also have a crushed T7 vertebra from a fall about 30 years ago. There is simply no way to get through this or even around it. All this poking and prodding has left me with Myeopathy—pressure inside the spinal cord. This is the cause of the spasms. Does it get better? It might given some time but not much. How do you control the spasms so you can still have a life? You over medicate the muscles to stop the spasms or at least calm them down as much as possible.  Doing this leaves you with little to no control over your legs so you are technically paralyzed. My neurologist says we can start to lower the Baclofen in pump just a very tiny amount and see what happens. If they get worse we can always go back up on it. What wonderful choices to choose from. Be confined to bed as a spastic in pain that isn’t controllable or live my life in a wheelchair with legs medicated to the point they don’t work very well if at all. I choose number 2 and will take things as they come.

Wanda

A Brief note from Wanda

I LOVE ALL OF YOU MY FEIENDS  BUT AM STILL IN TOO MUCH AGONY TO WRITE WHAT'S HAPPENED AND GOTTA GO REST

L LOVE YIU AKK./WANDA

My Tribute To Those Who Suffer With Us

    It’s hard to believe this incident happened almost 11 years ago but it has been that long. Hubby and I were taking a very late evening stroll as close to the Colorado River as we could get without risking falling down into it.

     The cool breeze through the trees of the campground was wonderful after the hot day. I was thinking that I wish my health would get better so we could start saving money and retire one day to live this lifestyle we were just getting a glimpse of. 

     My retired parents had a motor home and had invited us to travel with them for 2 weeks. We flew out to Phoenix to meet them and drive back home. They had been out there for a few months.

    

Hubby must have been reading my mind because suddenly he stopped, turned me toward him and said just what I had been thinking. I got very mad!!! How dare he say that I didn’t need my medications!!! How dare he say that I’m not in pain!!! How can he expect me to stop the very medications that were fighting back the lupus and Sjogren’s syndrome that ravaged my body every day!!! Stop my insulin!!! Does he want me dead???

     The rage I felt melted quickly and all I said was something to the effect that I would stop the medications if I could but I can’t and live. You see he was just giving a very polite vent about how things were going and he’d like it if things changed too. My medical bills were increasing every year but our income didn’t increase.

     This is a fact of life for those of us who live with chronic pain/illness. Our pain/illness doesn’t just affect us. It affects the whole family. This is a tribute to those spouses and kids who chose to stick it out with us.  This is for all of the spouses who have stuck around with us and tried to make a good go of our new lifestyle even though they don't like it and most definitely had other plans.  This is for all those spouses and children who have rearranged their lives around our needs. This is about all the missed vacations or just weekend trips to the beach because Mom/Dad doesn't have enough pain pills to go do that and we won't leave her/him home alone.   This is for all the missed school events and missed vacations simply because Mom/Dad hurt too bad to get out of bed.  This is for all of those out there who love us even though we get fat and start to walk "funny" and slow like we were our grandparent instead of us.

     Some of us need canes or walkers and even wheelchairs to just get from one room to the next at home.

     This is for all of the spouses who suddenly find themselves the sole support of the family while hoping the other one can get SSD or any other type of income soon.  This is for the husbands who find themselves doing housework after working all day and for the wives who find themselves working all day and then doing all of the housework plus the yard.  This is for all the frustrated times we've unfairly raged at our spouses and kids when really we are raging at AA but they "turned the other cheek" instead of replying in like manner.

     Sometimes we do tend to forget that others have to change their plans in life just to stay with us and they do this simply because they love us. How many times have we had to eat at home because the dining out money was spent for medications? Or even worse have had to decide between food and medicine?

     This is for my husband who worked all day and still had to fix dinner when he got home.

     What was I doing? I was writing this. Why did I write this instead of getting up and fixing dinner like I wanted to do?  I wrote this because my legs won't hold me up to fix dinner and I haven't learned how to do that from my power chair yet.

     We are both hoping and praying that getting my pump catheter fixed will make these problems and much of the pain go away again. We are both hoping and praying that nothing goes wrong with the surgery and things don't end up being worse.

     This is for all of the wonderful, loving people in my life. Thank you for being you. I love you.

Wanda

COLIN, IT'S WORTH THE HASSLE!!

Dear Colin,

   I’m sorry it has taken me so long to get back to you with an answer to your question. I have to admit that I didn’t look at the blog for several days and then it has taken me more days to come up with the accurate/adequate answer to your question. First I want to define hassle because it has more than one definition. The way I mean it is that something is a bother or trouble to do.

    I consider having adhesive arachnoiditis—A/AA—a hassle. The degree of hassle has varied for me from time to time. I don’t know why but from what I’ve read about A/AA this isn’t unusual especially when one has had it for a long time. I’ve had it for approximately 36 years. In the early years I didn’t need pain medications but as time went by more things happened to my lumbar spine and I got to the point where I needed pain medication as well as muscle relaxers on a regular basis. I had to be careful because I had three children to raise. It was hard to do but we’ve all survived it.

    This is a short summary of my life before I got my first implanted narcotic pump, AKA pain pump. At first when I needed regular medications for what had become chronic pain I didn’t have trouble getting my GP to prescribe them. After he retired I had to find a new doctor who would prescribe my medications. I had to “doctor shop” to find one who would prescribe for me but I could never be sure IF he would prescribe the same amount each month or IF he would change the medications or IF he would just stop prescribing. We have moved four times and each time it was a hassle to find a doctor for me for any reason. I have never used an illegal drug and I have never taken medications not prescribed for me. The hassle of finding and keeping a doctor for me consumed our life. The need for pills consumed our life. Can we go to the beach this weekend? We have to make sure Mom has enough pain pills. The pain medications had side effects which caused me to need medications to control them. Then the medications to control needed more medications to control those side effects. And the world goes around and around. Where does it stop? For me it stopped when I said no more of this. The amount of pain relief I was getting wasn’t worth the hassle of all these other medications and side effects. After weeks of prayer one night I just made up my mind and quit. I didn’t have any withdrawal or else I didn’t notice because I felt so much better all over. Until a couple of years later when…………

    One nice April evening I started to get up out of a low chair and I couldn’t because I had a sudden pain down the back of my right leg and into my foot. With help I got up but I could barely walk. I was becoming paralyzed from pain and whatever the A/AA had slowly been doing over the years. The local neurosurgeon I saw ordered an MRI and ended up giving me a prescription for a wheelchair along with the advice to learn to live with the pain now.  He said my pain would continue to get worse and if they started giving me pain medications now I would become tolerant and not be able to take enough to help the pain without killing me later on. He also mentioned that opioid medications can cause fatal liver damage when used in large amounts and/or for a long time. So you now know what was going on when I was offered the pump. You have called yourself a Crip more than once. What would you do if you were 41 years old with young children and told to live the rest of your life in a wheelchair sans pain medications? I imagine you would do just what I did.

    As I was leaving the neurosurgeon’s office his new young assistant called me over to the side and told me to go back to my old neurosurgeon immediately. I asked why but he wouldn’t tell me. I thought it was useless since he had already told me there was nothing to be done about the arachnoiditis but that was six years ago so I went to see him. He told me that I needed a pump. I spent two weeks in the hospital. On the first day the catheter tip was implanted in my spine and when I awoke from the anesthesia I wasn’t in pain except from the small incision on my back and the one on my side where the catheter came out. The first medication made me itch so we had to change to another pain medication. Then we had to get the dose right. It was too high after I went home so I spent another two days getting that straightened out. There was the pain from the implant. Back then they didn’t give oral medications to pump patients. I had a serum build up behind the pump but that doesn’t happen often. It did burst open the incision a wee bit and drain on its own. About two years after the implant my catheter broke in two pieces. They don’t know why. I had to have another catheter implant just like what I’m going to have done next Monday.

    After that catheter change I didn’t have any problems with the pump itself for about sixteen years when we noticed the flow rate was slowing down. During those sixteen years I had to have dose increases and they added in two other medications. After the doctor added bupivocaine most of my A/AA type pains were gone as well as the burning, stinging, stabbing, electric shock types of pain until March of ’06 when I started having new symptoms. I think this was about the time that the two of us started corresponding again after I had been sick with non-AA related health issues for a few years. First I got a new pump. I thought the doctor was going to just put the same medications back in it but he didn’t. He put me on another pain medication that I can’t use due to severe adverse reactions. That was the doctor’s fault. I told him no and I told him why but it didn’t get through to him. I had a very hard time getting through the nursing staff and office protocol for pump patients and my life was miserable for four months. But to his credit the doctor did finally realize what had happened and has been trying ever since to get me back to having that good pain control I had before. We’ve tried changing the pump doses and adding new medications. Nothing worked. There was nothing left to do but check out the pump. The first step in doing this is to check the catheter to make sure it’s OK. This is what we did and it is not OK. It is the old catheter so it’s sixteen years old now. It’s no wonder it sprung a leak.

    We know there will be problems getting the dose figured out. We don’t know how much is still going into my spine and how much is going into my body. From my symptoms not much, if any now, is going into my spine so we must start out low and work up just like this was a first time implant. I’ve been going through withdrawal symptoms as well as having all my A/AA problems come back just like they would be without a pump at all. The pain is horrible even though I have oral medications. But worse than that is I’m back to the wheelchair stage again. I’ve got a power chair which is nice but I still prefer to walk inside the house so I can do my activities easier. I have my walker with wheels and now I’m bending double over it to walk so that I don’t fall. There are some places that power chair won’t go in this house.

    I could not just sit here and let myself become totally disabled and in a wheelchair without giving the pump a try when it was offered. Considering the fact that it was a clinical trial I think the original pump procedure did go well. If you just look at the implant part of the second pump that procedure went well also. The old catheter has failed but it’s been a good one. The doctor goofed up but he seems to have learned a lesson about closer doctor-patient relationships. Your guess is as good as mine as to whether the new catheter will once again mask my problems with A/AA.

    In direct answer to your question, yes it is worth all the hassle for me. But it seems I may have been an exception for getting the desired results. I’ve had good pain control for spine originated pains with very little in the way of side effects. For a while I was a member of a group of people with pumps and it seemed to me that most of the people who used a pump for pain control were not happy with the results in one way or another. This doesn’t mean pumps don’t work or that they don’t/can’t give a desired result. It simply means that people who have problems are the ones who write in the most often asking questions.

     You mentioned the refills. The time between refills varies with each patient. It can be two weeks or three months. I don't see that as being any more demanding than having to go to a pain doctor or GP every month to get prescriptions. But it is very hard to change doctors once you have a pump so make sure you get a pain doctor you can work with and who will be around for years.

    There is one thing in your post that concerns me. You said your pain doctor offered you a pump for convenience sake. That is the worst reason I’ve ever heard to get a pump. I’ll stop here because I could write two more pages just about that one sentence.

Take care,

Wanda

THE CAKE

   THE CAKE

    This past weekend we celebrated our oldest granddaughter’s ninth birthday. We had the four grandkids who live nearby over for the entire weekend. I have an unusual relationship with them due to the limitations my health issues place on me and them too. The hardest one to overcome is my hearing loss. It’s very hard to listen to little girls and a growing boy with their soft voices and decipher what they want. Of course if they scream that helps. Around our house voices are always raised but not in anger, thankfully, but so granny can know what’s going on.

    I had already made sure she wanted the kind of cake I had mix for as well as the frosting. She was very happy with yellow butter recipe cake and lemon cream frosting. After dinner Friday night I asked her if she wanted me to bake the cake or did she want to do it. She started jumping up and down while yelling, “Me, Me!!” so I figured she wanted to do it herself with just a little help from granny. Then the first problem arose. The other two girls wanted to help too. So I said it was up to her to decide that. She said they could help. Good, we were over the first hurtle. All the time I kept on praying, “Lord, please let this cake come out fine”. We read the instructions and got out the ingredients and baking equipment. First problem here was the need for three eggs. All of them wanted to get the eggs so I told them that it calls for three eggs and there’s three of you so that’s one each. They each got one egg from the fridge.  The birthday girl decided she just had to grease the pan but didn’t know how so I explained while she followed instructions. She did a good job too.

    Now we needed those eggs. Each girl was to crack her own egg. The first two did just great but the “little one” didn’t want to get her fingers dirty with a raw egg. She’s only six but she plays with everything else under the sun so I don’t understand this thing about the egg.  With encouragement from the other two she finally got it cracked and into the cup. Then she had to wash her hands again.

    My kitchen is very small. Having a granny  with a walker plus three small girls in it was a wee bit much. Toes got stepped on and they tripped over me and the walker. I was surprised when we finished and nothing at all was broken except those three eggs! There was lots of laughter at this point. They took turns using the electric hand mixer and scraping the bowl. When it came time to put the cake in the pan the birthday girl insisted that she had to do it all by herself. “OK, go right ahead,” said granny and she did. She did it just fine. It took both of the older girls to get the 13X9 pan in the oven. Granny set the timer and war broke out.

    Three girls and two beaters to be licked wasn’t acceptable until granny made the observation that there is also a bowl and spatula. There was some quick alliances made and they settled down to licking the bowl, beaters, and spatula. When they were finished I took a couple of minutes to decide if the bowl needed to go into the dishwasher or not. It did look spotless but the dishwasher won out.

    The cake came out perfectly. My little birthday girl did the frosting on Saturday morning and she did it all by herself. She let her little sister do the candy hat decorations. No one could have done it better, not even me, AKA granny. (It's so hard for me to believe I've raised three kids and now have these grandkids plus two more who live too far away from home for me. In my head I feel like I'm still a newly wed. I won't say what my body feels like.)

    When these children grow up and look back to their youth I want them to remember me not for my handicaps or illnesses but instead I want them to remember me because of all the good times we had as well as the things we learned.* Times like baking cakes, going on picnics, learning to sew, talking about “stuff”, attending church, and just being together. These good times still have to be balanced out with teaching them right from wrong when necessary and I hope they will remember that as well. It was a wonderful weekend in spite of all the physical pain.

Wanda

    *”Take heed that ye despise not one of these little ones; for I say unto you, That in heaven their angels do always behold the face of my Father which is in heaven....Even so it is not the will of your Father which is in heaven, that one of these little ones should perish”.   Matthew 18: 10, 14. KJV

Pain Pumps & Me Part 8

Pain Pumps & Me Part 8

    It seems to me that it’s been a very long time since I wrote the Pain Pumps & Me series and published it here. I truly thought that my pump was working properly, my medications had been straightened out, and all was well with my world. Well, I was wrong again.

   The pain has continued to get worse and I am wondering just how much more this mortal body can take. I called my pump nurse and told her my sad tale. She was well aware of my plight because I had already discussed it with her at my last refill. She talked to the doctor and got back with me. The message was to increase two of my medications and see what happens. All that happened was my side effects got worse along with more pain. 

    The next step was to see the doctor. My appointment was scheduled at 9:00 but we didn’t get to see him until 12:30 but it was worth the wait because he took the time to answer questions I had about the pump. Questions such as do pumps that use only Baclofen (a muscle relaxer) get granulomas? Yes they do. What causes granulomas? They appear to be dose related or concentration related so it is better to use the least amount of medication as possible. He prescribed Neurontin for me to take until my next visit in three weeks. I tried but it simply has too many side effects for me to continue to take it. Neurontin, Lyrica, and Cymbalta are all FDA approved for diabetic neuropathy pain and are often used off-label for neuropathy caused by other diseases. I am diabetic and all three of these medications do help me but those side effects can make the cure as bad or worse than the pain they are meant to relieve.

    I went back to see the pain doctor earlier this week. I had no idea what to do about this whole fiasco. The pain is still so bad and I know I’m just about to the safe ceiling limit for intrathecal medications. After another long wait he finally comes into the exam room and makes himself comfortable. (This is a good sign.) He asks about the Neurontin and I tell him that it works on the pain but the side effects are very bad. He said that in that case the Neurontin did not work. I asked why and was told that any medication that works but has side effects so bad you don’t want to continue it, does not work. Then he said it is time we check out the catheter to make sure it doesn’t have a leak or scar tissue enclosing it or one of several other things that can go wrong with one. I’ve had this catheter for 16+ years and that’s a very long time. Even though I got a new pump last year we didn’t change the catheter out because of my spinal disease, Adhesive Arachnoiditis.

    The process to check out the catheter is simple. The medication is removed from it and a dye is injected into the catheter itself, not the pump. Then they use an x-ray method called a fluoroscope to watch where the dye goes. I do have a leak and a couple other problems. I’m not getting my medications where I need them and I’m not getting the full dose due to the leakage. The scheduling office will call me with a surgery date to replace the catheter. I hope it is very soon.

    It’s hard to describe how I feel just knowing that there is once again hope for getting much better pain control. Until then I’ll continue to hobble along while trying to do my best. At this moment my best is to go have a bowl of oatmeal.

Wanda

The Gospel According to Granddad

Hi,

I found this funny and it is a real story, not a joke though it could sound like one. Having raised three boys I can understand how the mix up happened. We have grandkids now and I've learned this little boy is right. The gospel of grandpa reigns supreme.

I wish you all a good, low pain life.

Wanda

"I have a son who will be five in June, and it is a constant adventure. For example, on Sunday, we went to a local wildlife preserve with some friends, and it is about a 40 minute drive from the city, so we made sure everybody used the bathroom before we left. We pulled into the parking lot, at which point my 23 month old daughter became carsick, and so I was distracted. As soon as we stopped the van, my son leaped out the door, ran to edge of a small ditch, and dropped his trousers to relieve himself. We were busy cleaning up the mess in the backseat, so we didn't say too much about it. So we carried on our walk through the preserve, and as we reached the entrance gate again, where the washrooms were, we asked who needed to go, and he informed me that he didn't need the toilet. Those were his exact words, and, in retrospect, I should have paid more attention to them. We got back to the van and started to put the little ones in their carseats, when he ran up to the top of the hill overlooking the parking lot, and in front of about twenty highly amused spectators, dropped his trousers once again!  He looked like a fountain statue. I, of course, strongly protested, saying "You just told me you didn't need to use the toilet!" He then proceeded to inform me that it was okay because we were outside, so it was just like camping, and “boys don't need toilets when they're camping, Mummy! Granddad said so!” It can be hard to argue with the gospel according to Granddad!”

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My Curtain Of Memory

Hi Dear Friend,

Below is an article I wrote today. I’d like to know if it is OK this way. What I mean is does it get the message across that God can take someone in as bad of a physical shape as I’m in and use me again? That’s how I mean it. How I learned to play the piano, why I only play one way, why I had to quit, the bitterness of that and now I’m playing again on a limited but much needed basis. Maybe the whole post should be trashed and just use what I told you here. You know how women like to talk!! Get back with me because I won’t post it until you do.

Thanks,

Wanda

MY CURTAIN OF MEMORY

   One of my favorite gospel songs has a phrase that says, “roll back the curtain of memory now and then…” Today I am doing just that, rolling back the curtain of memory about my years of playing the piano.

    We lived a country next door to my father’s parents who were farmers. My parents were “city workers” so I spent a lot of time at my grandparents. I learned lots of things there including how to play the piano. My grandmother played by ear and could read shaped notes. She couldn’t read round notes. I don’t know how old I was when I started trying to play what I’d hear her play but I got fairly good at it.

   The problem with that still haunts me today. Even though I took years of piano lessons and forced myself to learn to play some very simple pieces of sheet music for recitals, I still play the way I did back then. Of course I’ve gotten much better at what I can play and I do know how to read round notes. I even took organ lessons as an adult and more music lessons. The last piano teacher I had taught me how to do more with the way I play church and gospel quartet music. Learning anything else takes lots of practice and discipline. I don’t mind the practice but I hate not being able to express myself in what I’m playing. I just never could learn how to express Bach or Beethoven. Besides that nobody I know wants to hear me play classical music.

    I was about ten when I played the piano for church the first time. The pianist who played the first song before Sunday School wasn’t there and the church pianist wasn’t on time either. The Sunday School Superintendent asked if anyone else could play. My mother spoke up and said I could. I remember playing “Bringing In The Sheaves” in the key of C. That was the beginning of my music career.

                                                                                                                                                                     On March 20, 2000 my life as I knew it ended. I have Systemic Lupus. This is an autoimmune disease in which the body’s immune system gets confused and thinks normal, healthy body tissue is an invader such as a germ or virus and sets out to kill it. It can attack anywhere in the body without much, if any, warning. On this day it was my colon that got attacked and I lost so much of my body’s fluids that I went into shock. My daughter-in-law found me unconscious and got help. I was in a coma for eight days and on life support for part of that time. I have no memory of these events. I went to bed at home and woke up in this strange place. I was in shock for an extended time and the doctors had no idea what shape I’d be in when/if I woke up.

    I’ve had to use a walker ever since this happened. I use one with wheels and glides. I have a wire basket attached to the front to carry things I need.  I can’t stand up unless I am holding onto something steady. I also have to use a wheelchair/power chair lots of the time now. I lived in a “brain fog” that took me to some interesting places when I slept. I wasn’t very aware of lots of things. I developed Myoclonus Jerks which would cause me to fall if I happened to be standing up or walking. I would fall straight backwards most of the time. I couldn’t get up by myself. Needless to say I had to have 24/7 care.

    One night around 10:30 my husband was watching TV and I was walking to put something down on the table. Suddenly I had one of the Myoclonus Jerks and fell. This time I knew something was different. I couldn’t move my right arm and the pain was so bad. He wanted to help me up but I said, “No, go call an ambulance”. I did not know a person could scream so long and as loud as I did when the paramedics set my arm for transport. I had surgery to put in a rod and pins to “fix” it. I had PT at home three days a week and I was getting nowhere with it. Then I fell again and re-broke it. This time the orthopedic surgeon put in a shoulder joint replacement.

    I never got back much use of my right arm. This ended my piano career. It ended just about everything I couldn’t do with my left arm and hand. I became even more dependent on others to take care of me. A special brace is now attached to my walker to support my right arm and I can use it to help guide the walker. The shoulder replacement joint got infected right after surgery. Good old staph but it wouldn’t go away. For two years I was on and off IV antibiotics at home. Insurance didn’t pay for this or for the sitters. In 2004 the joint replacement was removed. Now I do not have a right shoulder joint at all but I am much better off without it. My arm has improved lots but I can’t raise it. I can type, eat, sew, and brush my teeth. I still can’t comb my hair with it.

    In 2005 the Lupus launched an attack on my liver. This put me in the hospital, again. I was there for 10 days.

    When I left the hospital that time I started getting better. Very slowly, just bit by bit I improved. Actually God worked a miracle. I came out of my “brain fog” and I don’t visit strange places in my head anymore. I can eat again and have gained back the weight I lost.  But the best thing that has happened is that I can play the piano once again. The bad thing is that I got so depressed and I didn’t really know what I was doing and I gave my piano away. I can’t buy a new one so my church let me bring home the keyboard to practice on. Still it isn’t a piano. I want my piano back that my parents bought for me but it’s too late now.

    Now I can play the piano for Sunday morning service. This really tires me out and it does cause pain but it is pain that I gladly endure just so I can play the piano again and express my love for my Lord and Savior, Jesus Christ. This is a great miracle if people will just see it for what it is.

    I also play for the church quartet. My husband sings in it and has for many years. I was always upset when he sang. I got down right mad at God because I couldn’t be a part of that anymore. After years of playing piano for church I was back on the side lines.  We had another pianist so I wasn’t needed. Then I was too sick. I didn’t think God ever could/would use me again with the only talent I have and believe me it is one talent not ten like the good servant got in the Bible parable.

    Now, Praise God, I am able to play for the quartet and my husband and I are working together again. I can’t express how happy this makes me. The peace, the love, the memories—old and new—are bringing us closer together again. It’s like starting all over with a clean slate. We are re-building bridges that were lost while I was so sick. Quite often it is the little things that make a big difference. The touch on my shoulder; an unexpected hug; a wink; a smile; or a sparkle in his eyes. These are new and wonderful again.

    But for tonight I’m scared. Our quartet is singing tonight in front of a whole bunch of strangers. It is the spring choir festival at another church and several churches will be there with their choirs. I’ve never played before this many people and these people know music. Our daughter-in-law will be singing and she’s a semi-pro. The main problem is that I can’t hear the quartet unless they are right beside me because I’m almost deaf. Then I’ll have to be helped to the piano along with my walker and my navy tote that conceals as much of my supra pubic catheter drainage system as possible. Play. Then reverse the process. At least we’re supposed to be first on the program. I’ll let you know what happens and how I feel when I get back.  Wanda @4:30

    Hello again. It’s after the choir festival and I survived it!!!

    I was able to enter the sanctuary via the handicapped ramp leading into the front of the room. It was right beside the stage but it was the wrong end of the stage for me. I needed to be where the piano was not the organ. Also I had three steps to get up and there aren’t any handrails for support. The choir chairs had been brought down and put in front of the stage/altar area so that I couldn’t walk on the floor to get to the other side. I was helped onto the stage and I had to walk all the way across it to the piano. There wasn’t a thing or a soul up there but me and my trusty walker. I was looking down on a completely filled sanctuary of about 225 people. Thankfully they were busy talking and I don’t think many noticed me at first.

    I needed to warm up and get the feel of how this piano played so I got a hymnal and start to play very softly. That did get more attention and I was asked to play louder so I did. Then it was time to begin and our quartet came up to sing. They came over to the piano where I could see and hear them. We did just fine. I didn’t get nervous and shaky at all. I knew what I was there for and I did it. I was there to give praise to God as was the quartet and all the other singers/musicians. Everyone did just great and we had a wonderful time. I liked the applause but there was something I liked even better. When my feet were once again on the ground floor I looked up and saw my daughter-in-law, her mother and our mutual granddaughter all smiling and happy and beaming. They are the ones who were with me when the doctors said I was ready for Hospice care and they are the only ones in the building who really knew what this playing of one short song meant to me.

    I hope that all who read this will understand that God can and will use anyone for His glory if you are willing.

Wanda

My Friends Live In My Computer

   MY FRIENDS LIVE IN MY COMPUTER

    Every day I get several jokes from people I’ve only met via the Internet. Every few days I get something that is uplifting and very worthwhile.   All of these are very important to the state of my health. These can be funny and make me laugh and they will probably be the only laughs I have on many days. I’m not saying that my husband and family don’t have any humor in them. What I’m saying is that I don’t have much humor in me because some days the pain just won’t let good things shine through. The saying I’ve seen a few times online says that “my friends live in my computer”. This is pretty much the truth for me and many chronic pain patients around the world. I don’t like using the word “patient” to describe us. We are more than that and just because we have been injured or got sick doesn’t change who we are. We are still fathers, mothers, brothers, sisters, grandparents, friends, etc. However how we are able to live in and respond to the world has changed. Unfortunately most of the world does not allow for these changes. We gain Handicapped Tags and Placards along with assistive devices while we lose friends and many times family.

    The One Person we can not lose is God. Sometimes we may think we have when times are really black but if we have truly accepted Jesus as our Savior and Lord then we will always be safe. John 3:16 tells us: “For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life”. KJV

    It doesn’t matter what the state of our health is, it is the state of our heart that others see and respond to. With the exception of number 1, which involves driving a car, I don’t see anything here we can’t do in some small way. It never ceases to amaze me when I get comments about the things I share here. It makes my day worthwhile just to know that a few words here can help someone else on the other side of the world or in my backyard. When the heart is happy, no matter how weary the body is, one can lay down in peace and hope to stay there long enough for a good night’s sleep. Pain tends to make sleep disappear except when we want to stay awake. I haven’t figured that one out yet.

    I don’t remember which friend sent me the email below first or even second. It is the fact that I have these wonderful friends who live in my computer that helps make this so special. I’ve left it the way I got it and while I did forward it to other friends and family I’ve decided to share this with all of you who are willing to read it. Perhaps it will help you and you’ll send it on to someone else too.

    I believe these words to be true.

God bless you all,

Wanda

WHAT GOD WILL ASK (author unknown)

1. God won't ask what kind of car you drove. He'll ask
how many people you drove who didn't have
transportation.

2. God won't ask the square footage of your house.
He'll ask how many people you welcomed into your home.

3. God won't ask about the clothes you had in your
closet. He'll ask how many you helped clothe.

4. God won't ask what your highest salary was. He'll
ask if you gave some to help others.

5. God won't ask what your job title was. He'll ask if
you performed your job to the best of your ability.

6. God won't ask how many friends you had. He'll ask
how many people to whom you were a friend.

7. God won't ask in what neighborhood you lived. He'll
ask how you treated your neighbors.

8. God won't ask about the color of your skin, He'll
ask about the content of your character.

9. God won't ask why it took you so long to seek
Salvation. He'll lovingly take you to your mansion in
heaven, and not to the gates of Hell.

10. God won't have to ask how many people you
forwarded this to. He already knows whether or not you
are ashamed to share this information with those you
love. Repost this if you believe in God.

May God bless you.

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25 Signs You've Grown Up For Good

Hi,

A friend sent me the item below. My reply is simply this: “Maybe it's time to stick my fingers in my ears and close my eyes while I'm saying over and over again: "I refuse to grow up!"

I hope you enjoy this one.

Wanda

25 signs that you've grown up for good 1. Your houseplants are alive, and you can't smoke any of them. 2. Having sex in a twin bed is out of the question. 3. You keep more food than beer in the fridge. 4. 6:00 AM is when you get up, not when you go to bed. 5. You hear your favorite song in an elevator. 6. You watch the Weather Channel. 7. Your friends marry and divorce instead of "hook up" and "break up." 8. You go from 130 days of vacation time to 14. 9. Jeans and a sweater no longer qualify as "dressed up." 10. You're the one calling the police because those %&@# kids next door won't turn down the stereo. 11. Older relatives feel comfortable telling sex jokes around you. 12. You don't know what time Taco Bell closes anymore. 13. Your car insurance goes down and your car payments go up. 14. You feed your dog Science Diet instead of McDonald's leftovers. 15. Sleeping on the couch makes your back hurt. 16. You take naps. 17. Dinner and a movie is the whole date instead of the beginning of one. 18. Eating a basket of chicken wings at 3 AM would severely upset, rather than settle, your stomach. 19. You go to the drug store for ibuprofen and antacid, not condoms and pregnancy tests. 20. A $4.00 bottle of wine is no longer "pretty good shit." 21. You actually eat breakfast food at breakfast time. 22. "I just can't drink the way I used to" replaces "I'm never going to drink that much again." 23. 90% of the time you spend in front of a computer is for real work. 24. You drink at home to save money before going to a bar. 25. When you find out your friend is pregnant you congratulate them instead of asking "Oh damn, how the hell did that happen?" Bonus: 26: You read this entire list looking desperately for one sign that doesn't apply to you and can't find one to save your sorry old butt; Then you forward it to a bunch of old friends cuz you know they'll enjoy it too. I’ll have you know, that number 23 doesn't apply to me....so there!

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BLESSINGS

  BLESSINGS

   For several months I’ve been meaning to write about my blessings but I just haven’t been able to get the right words down on paper or more accurately on computer. Then a few days ago as I was looking for my Easter music I came across an old song I’d completely forgotten about. As I sat down to play this gospel style hymn I also began to look closely at the words. This song describes the way I feel so I’m publishing it here.

It is Easter time for most of the Christians in the world and this song was written by The Easter Brothers, James, Russell, and Edd.

THANK YOU, LORD, FOR YOUR BLESSINGS

   “As the world looks upon me as I struggle along, and they say I have nothing, but they are so wrong; in my heart I’m rejoicing, and how I wish they could see, Thank you, Lord, for Your blessings on me.

   “I know I’m not wealthy, and these clothes are not new, And I don’t have much money, but Lord, I have You; And to me that’s all that matters, tho’ the world may not see, Thank you, Lord, for Your blessings on me.

Chorus:

   “There’s a roof up above me, I’ve a good place to sleep, There’s food on my table and shoes on my feet; You gave me Your love, Lord, and a fine family, Thank you, Lord, for Your blessings on me.”

   Health isn’t mentioned in this song and I can’t leave it out.  Perhaps the authors had health in mind when they used the words “struggle along”. This is my big struggle. The struggle may be different things for different people. I’ve lived in chronic pain for so long I can barely remember not having pain everyday. This morning as I was trying to wake up I was in a dream about a time and place where I lived and didn’t have pain. It was a good memory. Then I woke up completely and re ality hit. Where is the Aleve when you really need it?

   Health is the great equalizer here. I’ve met rich people and I’ve met poor people in the doctor’s office waiting room.  Let’s take a look at the Pain Management Clinic waiting room. One half of the people there are in severe chronic pain. Why only one half? Because the other half brought them there.

   The truth here is that some people have better surroundings to suffer in than others. But it still comes back to what’s going on inside us—inside our head, our heart. It’s like the song says: “…in my heart I’m rejoicing…”.

  Friday I have to visit the pain doctor for a "procedure" because the pain is more than my pump can handle. Facet injections are OK but not an epidural steroid injection. I can't find out which one he wants to do from the nurse so I just have to go and see what happens. I hope this helps the sympathetic pain which is what this is supposed to be.

   Saturday we have Easter egg hunts to take the grandkids to.

   Sunday we celebrate the 2000+ anniversary of the resurrection of Jesus from the dead. This is the greatest event in the history of this world we live in. Christ arose! Amen!

God bless,

Wanda

Miracles, Grandkids & Mistakes

MIRACLES, GRANDKIDS & MISTAKES

    Some people say that I am “fortunate” to have lived as long as I have. But I’m not that old, am I? No, I’m not but I won’t tell my physical age because my inner being doesn’t feel that old. When I told my youngest son that he can’t be 29 because I’m just 18 he looked at his wife and said, “And you think I‘m crazy? Now you know where I got it”. I didn’t ask what “it” is. My doctors told me that I have “Someone” up there taking care of me because they didn’t do anything to bring me through that particularly tough lupus attack. All they did was put me on life support. I call that doing something to help. After that attack in 2000 I had several more, the last being in early 2005. Once again I was “fortunate” to have survived the lupus. Not only did I survive, I got better—lots better (though never whole again). Why? Miracles. God sent miracles my way. He answered my prayers as well as the prayers of others. Praise God!!

    Now I can spend “quality” time with my grandkids. I can’t do much outside the house though. I’m stuck in here because it is too hard to get out the door with this walker I have to use at all time. When I tried it alone I ended up hurting my shoulder and arm. I guess if it were a matter of life and death, I’d get out the door. I do have a wheelchair ramp so once someone holds the door open I can get out safely. The truth is that no matter where I am, I am in constant pain. This is the life of a chronic pain sufferer. We live on a tight rope while trying to juggle a somewhat normal life so we are bound to fall off and we hope there will be a safety net below us when this happens. Usually there isn't one. My biggest problem is getting mad at the least little thing that goes wrong or not my way. It's a constant battle for me.

    I have one grandchild who stays with me after school and any time school isn’t in session. This included last summer. I have two more who come on weekends most of the time. The fourth one comes less now because age brings on more activities with friends and school. The other two live too far away so I only get to see them a couple of times a year.

    I can handle the oldest grandson just fine. He’s 11 now and is lots of fun to be around but he is a boy and boys do tend to get into trouble if not watched closely. The eight year old who stays after school is also fun to be with and I don’t have many problems with her. However when she wants her way it’s very hard to convince her that no means no. “What part of NO do you not understand?”  The two who come on weekends, ages six and eight, are harder to deal with than just one alone. But this is normal since sisters do tend to get into disagreements from time to time. They are fun to be with too. In case you don’t realize it I’m a proud granny who loves to be with her grandkids. I love being a part of their lives. They have just accepted my disabilities as part of life. Three of them learned to pull up and walk by holding onto my walker with me.

   This week is Spring Break and I’ve had the grandkids here with me but not all on the same day except for Monday. Grandpa doesn’t usually leave me alone with the kids when three or four are here but Monday he had an emergency at work and was gone all day. So, the four of them wanted to go outside to play. It was very warm and sunny so I said, OK. What could they get into since I told them to stay in the yard? I couldn’t go out but I could look out the windows and see them. I watched as they ran around the house playing chase. Then hide and seek. They played with the neighbor kids for a short time. Lastly I saw them outside the bow window in the dinette. They seemed to be having fun and I couldn’t see anything wrong. I just saw the tops of heads moving around. Then the youngest, age six, comes in to ask for ice cream. “No, not until after lunch which is now. Go get the others”. Then I took a close look at her and noticed she was covered in mud. That’s right MUD and she’d tracked it all through the house while looking for me. Needless to say when the other three showed up they were also covered in mud. Had it rained lately? No. But a nice eleven year old boy can carry a water hose around the house, hook it up and make a mud hole to play in. Whose Idea was this? The eight year old only child. Who used Scout training to make it a good mud hole? The oldest sister. What about the youngest? Her suggestion was to take off their shoes before getting into the mud. Was granny mad? YES!!!!!!

    So I had them clean up and eat lunch. I told them to stay inside and watch TV or play games. Then I made my second big mistake of the day. I turned my back on them by going to another room for something. When I came back, they were outside again and right back into that mud hole!!!! This time with shoes on. I sat down and gave in to laughter. What else could I do at this point? When supper time was coming up I called them in again. I sent the three girls to take a shower and the boy to take a bath. They put on their third set of clothing for the day. We had to go to the funeral home for a visitation. 

    Then grandpa came home and saw the clean kids but the very dirty floor and carpet. Yep, dried mud everywhere. He wasn’t happy at all about this. He set the kids to cleaning up their mess. They had to pick up their toys, vacuum the floor and get ready to go. Grandpa called one son to come get his kid. The boy we took home. The other two went to the funeral home with us.

    Here I sit today. The two sisters are watching TV and want some ice cream. I said after lunch which is soon. I’m here because God used His miracles to preserve my life on Earth for a while longer. He’s given me these extra-ordinary times with my grandkids. I know they will soon be too “grown up” to want to spend this much time with a granny who can’t get around very well. I try to cherish every moment even when they disobey. It’s part of the learning process. I will have to try harder not to make mistakes with them. I want this to be a refuge for them. I want them to know that I will always be here for them. It’s a big commitment but it is worth it.

   I pray that getting into a mud hole is the biggest mistake these grandkids and I ever make. I should have watched them closer but they should have not done it because they knew it was wrong. Still I am the adult even if I am “disabled” in my physical body. Besides, it is funny now and this will hopefully be a good memory for the five of us and our generations who will follow.

Wanda