Have you ever thrown a rock into a pond, and watched the ripples spread out from it? Everything we do in life creates ripples which affect those around us. Some of the ripples are good. A parent who sacrifices to make sure that her child is able to accomplish his dreams; a doctor who uses his skills to save the life of someone; these ripples have positive outcomes for all involved. But, the bad we do can create ripples as well. My birth father created negative ripples, which continue to affect me even today twenty years after his death.
My mother and father divorced when I was only 4 years old. Ronnie was a drunk who only cared about himself. My mother has told me that there was times when the only thing in the refrigerator was beer, and she had no idea how she was going to feed my sister and I. She would pray to God for help, and somehow, my grandparents would show up with a car full of groceries. Not long after my sister was born, Mom realized that she had done all she could. She came home one night from having dinner at my grandparents. She had just put me in the bathtub, when Ronnie walked in, drunk of course. He looked her in the face and said, "I hate you, I hate those two brats of yours. Get the hell out of my house." My mother didn't say anything else. She got me out of the bath, bundled up my sister and me, and we went back to my grandparents house. That was the last time that I lived with Ronnie.
The divorce was contentious. Ronnie didn't want my sister and I, but he didn't want my mother to have something he considered to be his property. My mother's attorney told her not to let him get us across state lines, because he felt she would never see us again if he did. I remember going to Ronnie's parents house once and to his sister's house another time. Those are the last two times I remember seeing him. Years later, Ronnie's attorney came up to my mother at a party. He told her that he owed her an apology. The attorney stated that Ronnie was the meanest son of a bitch he ever represented and he had regretted it for all these years.
Shortly after they separated, my mother met the man who would become my Daddy. He was friends with my grandmother's next door neighbors and they met over there one evening. Now, this was in the mid 1960's and they could not be seen in public together. They would meet at the neighbor's house and fell in love with one another. One day not long after they met, Ronnie showed up at my grandparents' home, drunk and carrying a gun. He was yelling and banging on the door, threatening to kill all of us. My mother called my Dad, her boyfriend at the time, and told him what was going on. He left work, went to his house and got a shotgun and headed for my grandparents. By the time Daddy got there, Ronnie was gone. He and my mom found me sitting on the edge of the couch in the living room, staring straight ahead without blinking, rocking back and forth with my arms wrapped around myself. The two of them sat with me, talking soothingly for four hours before I started to come out of it.
To this day, I have no real memory of Ronnie. I don't know what he looked like or anything else about him. Quite honestly, I don't want to have any memory of him. My grandfather kept a ledger until my sister turned 18 years old, indicating every child support payment Ronnie missed. He did this just in case Ronnie might try to come back into our lives at some point. Daddy wanted to adopt my sister right away, but wasn't able to until I turned 14 years old. Even though he wouldn't pay child support, and had no interest in seeing us, he refused to sign away his parental rights. They were able to claim abandonment when I turned 14 and my dad adopted my sister and I right after this.
Ronnie has created so many painful ripples in my life because of his actions. I have had a fear of abandonment my entire life. I always thought that if my own father couldn't love me enough to be in my life, how could anyone else. As soon as other people would start to get close to me, I would do something to run them off, proving again to myself that no one could possibly love me. I have suffered from PTSD for years, although we didn't know that was what it was until recently. A psychologist traces it back to the episode with the gun, and feel that this was the trigger to my fibromyalgia, which is often brought on by either physical or emotional trauma.
Ronnie died when I was about 25 years old. My mother brought me his obituary, and it was as if I was looking at some stranger's death announcement. I did learn that I have a half sibling, and I have no desire to meet this person. But with his passing, I was finally able to let go of most of the pain that he had caused me over the years. I realized that he had no hold on me anymore, and I was able to find a little bit of peace.
We need to be aware that everything we do in our life can, and does, affect those around us. Sometimes, we don't even realize it. But I think we each have a responsibility to try and make the ripples we send out positive. You never know the kind of pain that an insensitive comment or action can cause another human being. Treat one another with love and respect, and remember that we all create ripples everyday of our life.
Saturday, March 31, 2012
I'm Tired of Being Responsible
I'm going to share something with you today that I'm not really proud of, but it is what it is. I'm tired of being responsible. Now, I don't mean that I want to go out partying, or go on a crazy shopping spree that I can't afford, or anything like that. I'm tired of having to be responsible for everything that happens at home. As you know, my husband and I are both disabled. He is confined to a wheelchair, and he can't get out and do things the way that I can. I also know that he would do it for me in a heartbeat if he could. But, I can't help the way I feel. There are days when I really resent having to take care of everything.
The last few days, I haven't been feeling very well. But I have been on the go since 6 am, everyday this week. I have had to run all sorts of errands, shopping, bill paying, taking the boys here and there. I haven't been sleeping well and my knees are hurting so bad that every step is agony. All I want to do is spend a couple of days off my feet, doing as little as possible. But that just isn't possible. Jack has basketball practice this morning, I have a few more errands to run while he is there, and then I have to go back and pick him up. Once we get home, he has to jump in the shower, and then back in the car we go to take him to a friends house for a slumber party.
I try not to complain too much about the things I have to do. It really doesn't do me any good, anyway. When I do say that I don't feel up to doing the things I have to do, Dale gives me a handful of reactions. Sometimes I get the Dale who tries to make me feel guilty with something along the lines of "Well, if I wasn't stuck in this wheelchair, I'd go do it myself, but I just can't." I know that you can't, and I'm not asking you to do it. I just want you to realize that I am disabled, too, and there are days when I can't push myself any further. Another reaction that I get is passive aggressive: "Fine! Just don't do it and we'll just starve, or they can just come and cut the water off!" Or, insert whatever response you want into this. I'm going to take care of it, I just want you to realize that sometimes, I feel just as bad, or worse, than you do!
We refer to chronic pain, fibro, and other illnesses like these as "invisible conditions". You don't necessarily see that we have anything wrong with us. I can understand that from people who don't know me. I've actually gotten rather used to it, unfortunately. But is it to much to ask that my family, who I am with day in and day out, remember that I have a chronic condition? For the most part, my husband is very good about my problems. He does what he can around the house, and quite often tells me not to get up, because he knows how bad I am feeling. But the minute something needs done outside the house, he completely forgets that I may not be feeling up to it right at that moment.
Well! I feel a little better, now that I've gotten that off my chest! I will continue to do what has to be done. I'll keep running all the errands that have to be run, and for the most part, I will do it with a smile on my face. To be honest, I really don't have a choice in the matter. But sometimes, you just have to let it all out, and I thank you for letting me rant and rave, even for a few short minutes!
The last few days, I haven't been feeling very well. But I have been on the go since 6 am, everyday this week. I have had to run all sorts of errands, shopping, bill paying, taking the boys here and there. I haven't been sleeping well and my knees are hurting so bad that every step is agony. All I want to do is spend a couple of days off my feet, doing as little as possible. But that just isn't possible. Jack has basketball practice this morning, I have a few more errands to run while he is there, and then I have to go back and pick him up. Once we get home, he has to jump in the shower, and then back in the car we go to take him to a friends house for a slumber party.
I try not to complain too much about the things I have to do. It really doesn't do me any good, anyway. When I do say that I don't feel up to doing the things I have to do, Dale gives me a handful of reactions. Sometimes I get the Dale who tries to make me feel guilty with something along the lines of "Well, if I wasn't stuck in this wheelchair, I'd go do it myself, but I just can't." I know that you can't, and I'm not asking you to do it. I just want you to realize that I am disabled, too, and there are days when I can't push myself any further. Another reaction that I get is passive aggressive: "Fine! Just don't do it and we'll just starve, or they can just come and cut the water off!" Or, insert whatever response you want into this. I'm going to take care of it, I just want you to realize that sometimes, I feel just as bad, or worse, than you do!
We refer to chronic pain, fibro, and other illnesses like these as "invisible conditions". You don't necessarily see that we have anything wrong with us. I can understand that from people who don't know me. I've actually gotten rather used to it, unfortunately. But is it to much to ask that my family, who I am with day in and day out, remember that I have a chronic condition? For the most part, my husband is very good about my problems. He does what he can around the house, and quite often tells me not to get up, because he knows how bad I am feeling. But the minute something needs done outside the house, he completely forgets that I may not be feeling up to it right at that moment.
Well! I feel a little better, now that I've gotten that off my chest! I will continue to do what has to be done. I'll keep running all the errands that have to be run, and for the most part, I will do it with a smile on my face. To be honest, I really don't have a choice in the matter. But sometimes, you just have to let it all out, and I thank you for letting me rant and rave, even for a few short minutes!
Friday, March 30, 2012
Fibro Fog
I've spent a lot of time trying to figure out what to write about this morning, but every time I would start to get an idea it would either float away before I could really get hold of it ,or another thought would pop up, and I wouldn't even remember what it was I was trying to think of in the first place. This isn't anything unusual for me, and the millions of others out there suffering from fibromyalgia. While I'm sure it isn't the technical name, this inability to focus is known as Fibro Fog.
This is one of the most annoying parts of this condition for me. I will be talking with someone and be in the middle of a sentence, and all of a sudden, I have no idea what I was talking about, or why I was talking in the first place. I usually try to make a joke about it, or claim to have lost my train of thought, but once this has happened many times, people start to look at you a little funny. There are times when I cannot think of the names of friends, or even common objects. I know exactly what it is that I want to say, but the word just isn't there, and no matter how hard I try to think of it, I draw a complete blank!
I also loose things all the time! I have learned to put things in the same place every time, but this doesn't always work. There have been times that I have searched for my keys or my cell phone over and over, furious with myself that I can't find them, only to discover that I am holding them in my hand. I have looked for my glasses for long minutes, only to discover that they are right where I left them - on top of my head! You can't imagine how embarrassing this can be. Like I said before, I've learned to make jokes about it, but it really isn't all that funny after the tenth or twentieth time it happens.
I now make lists all the time to keep me on track. If I am going out to run errands, or pay bills, I have a list with me that tells me where to go, the order of places I want to go to, and the amount of money that I'm going to need at each place. If I walk out of the house without the list, I am completely lost. I then depend on my cell phone to call my husband in between each destination to tell me where I'm going next and what I am supposed to do when I get there. And I hate that I have to do these things.
I always knew that there would come a time when I had trouble remembering things. I watched my Grandfather deal with multiple infarct dementia, and my Grandmother developed Alzheimer's. And while the issues that I deal with having "fibro fog" are not nearly as severe as the ones they dealt with, it sometimes feels very similar. But I thought I had many more years before I began dealing with this. If nothing else, it gives me a greater understanding to how they must have felt when simple things began to slip away.
If you have fibromyalgia, or you know someone who does, please understand that we do not do these things on purpose. It is simply a part of the condition that we have to live with everyday. Try to understand that we did not forget your name because you are not important to us. We simply cannot access that information at that moment. The next time we meet, your name will probably come to us right away. If you notice us struggling to find a word, be patient. It will come to us, and if it doesn't, but you can tell what we are trying to say, kindly give us that word. And lastly, join us in trying to increase awareness about fibromyalgia. More and more people are being diagnosed with this condition daily, and if you don't know someone with fibro today, you probably will soon.
This is one of the most annoying parts of this condition for me. I will be talking with someone and be in the middle of a sentence, and all of a sudden, I have no idea what I was talking about, or why I was talking in the first place. I usually try to make a joke about it, or claim to have lost my train of thought, but once this has happened many times, people start to look at you a little funny. There are times when I cannot think of the names of friends, or even common objects. I know exactly what it is that I want to say, but the word just isn't there, and no matter how hard I try to think of it, I draw a complete blank!
I also loose things all the time! I have learned to put things in the same place every time, but this doesn't always work. There have been times that I have searched for my keys or my cell phone over and over, furious with myself that I can't find them, only to discover that I am holding them in my hand. I have looked for my glasses for long minutes, only to discover that they are right where I left them - on top of my head! You can't imagine how embarrassing this can be. Like I said before, I've learned to make jokes about it, but it really isn't all that funny after the tenth or twentieth time it happens.
I now make lists all the time to keep me on track. If I am going out to run errands, or pay bills, I have a list with me that tells me where to go, the order of places I want to go to, and the amount of money that I'm going to need at each place. If I walk out of the house without the list, I am completely lost. I then depend on my cell phone to call my husband in between each destination to tell me where I'm going next and what I am supposed to do when I get there. And I hate that I have to do these things.
I always knew that there would come a time when I had trouble remembering things. I watched my Grandfather deal with multiple infarct dementia, and my Grandmother developed Alzheimer's. And while the issues that I deal with having "fibro fog" are not nearly as severe as the ones they dealt with, it sometimes feels very similar. But I thought I had many more years before I began dealing with this. If nothing else, it gives me a greater understanding to how they must have felt when simple things began to slip away.
If you have fibromyalgia, or you know someone who does, please understand that we do not do these things on purpose. It is simply a part of the condition that we have to live with everyday. Try to understand that we did not forget your name because you are not important to us. We simply cannot access that information at that moment. The next time we meet, your name will probably come to us right away. If you notice us struggling to find a word, be patient. It will come to us, and if it doesn't, but you can tell what we are trying to say, kindly give us that word. And lastly, join us in trying to increase awareness about fibromyalgia. More and more people are being diagnosed with this condition daily, and if you don't know someone with fibro today, you probably will soon.
Thursday, March 29, 2012
Sleep!
I have always said that nothing in this world could make me go back and relive my teenage years. For me, personally, that was probably the most painful time in my life. I experienced depression, bullying, loneliness, and the list goes on. Recently, however, I have discovered one thing from those years that I would love to experience again. What might that be, you ask? It's one very simple word....SLEEP!
As a teenager, I was a world class sleeper. My father used to be convinced that there was something horribly wrong with me because I did not hop out of the bed at 7:00 am every single morning. During the week, it practically took dynamite to get me out of the bed. On the weekends, it was nothing for me to sleep until 1 or 2 in the afternoon. And this is what convinced my dad that I must be desperately ill.
Now, the fact that I didn't want to go to bed at all, probably contributed to my ability to sleep so late. But once I fell asleep, I could stay that way. How I miss those days! Now, because of my pain, I stay up late into the night. Frequently, once asleep, I wake up every one to two hours, and I hate it! Sleep is elusive, and I am always looking for it, whenever and wherever I can find it. Naps have become essential, and I have come to the conclusion that they are wasted on the young. They just don't appreciate them the way someone who doesn't sleep well does.
For the last 10 years, I have had horrible problems sleeping. I'm not alone. Most people with chronic pain, including fibromyalgia, go without deep, restful sleep. We have trouble falling asleep, and once we do, we can't seem to stay asleep. Quite often, the pain that we deal with day in and day out, prevents us from getting the deep, restful sleep that so many people take for granted. Most of us have tried everything searching for sleep. We try natural sleep aids like melatonin and valarian. We take prescription sleep medicine such as Lunesta and Ambien. We listen to soothing music, try self-hypnosis, and use sound machines. None of it seems to help.
Most people know what it feels like to lose sleep occasionally. They know how miserable they feel missing just a couple of nights sleep. But they can't imagine what it's like to have sleep disturbances every single night. We all need deep, restful sleep. When you don't get it, just functioning becomes almost impossible. Our bodies require that deep restorative sleep, and when you don't get it, every aspect of your life is affected. You can't concentrate, you start to lose coordination, you become irritable. And this hardly ever ends.
And this is why I would return to those teen years. The thought of sleeping for eight straight hours seems like a fantasy anymore. I dream about sleep, but of course, dreaming about it and doing it are two different things. I can imagine burrowing down under my comforter and finding that perfect position. My pillows stay cool, and my mattress is just the right combination of firmness and cushioning. I have pleasant dreams, and I awake feeling refreshed and ready to face the day. Ahh, to live just one night from my teens and sleep that peacefully again would be worth just about anything!
As a teenager, I was a world class sleeper. My father used to be convinced that there was something horribly wrong with me because I did not hop out of the bed at 7:00 am every single morning. During the week, it practically took dynamite to get me out of the bed. On the weekends, it was nothing for me to sleep until 1 or 2 in the afternoon. And this is what convinced my dad that I must be desperately ill.
Now, the fact that I didn't want to go to bed at all, probably contributed to my ability to sleep so late. But once I fell asleep, I could stay that way. How I miss those days! Now, because of my pain, I stay up late into the night. Frequently, once asleep, I wake up every one to two hours, and I hate it! Sleep is elusive, and I am always looking for it, whenever and wherever I can find it. Naps have become essential, and I have come to the conclusion that they are wasted on the young. They just don't appreciate them the way someone who doesn't sleep well does.
For the last 10 years, I have had horrible problems sleeping. I'm not alone. Most people with chronic pain, including fibromyalgia, go without deep, restful sleep. We have trouble falling asleep, and once we do, we can't seem to stay asleep. Quite often, the pain that we deal with day in and day out, prevents us from getting the deep, restful sleep that so many people take for granted. Most of us have tried everything searching for sleep. We try natural sleep aids like melatonin and valarian. We take prescription sleep medicine such as Lunesta and Ambien. We listen to soothing music, try self-hypnosis, and use sound machines. None of it seems to help.
Most people know what it feels like to lose sleep occasionally. They know how miserable they feel missing just a couple of nights sleep. But they can't imagine what it's like to have sleep disturbances every single night. We all need deep, restful sleep. When you don't get it, just functioning becomes almost impossible. Our bodies require that deep restorative sleep, and when you don't get it, every aspect of your life is affected. You can't concentrate, you start to lose coordination, you become irritable. And this hardly ever ends.
And this is why I would return to those teen years. The thought of sleeping for eight straight hours seems like a fantasy anymore. I dream about sleep, but of course, dreaming about it and doing it are two different things. I can imagine burrowing down under my comforter and finding that perfect position. My pillows stay cool, and my mattress is just the right combination of firmness and cushioning. I have pleasant dreams, and I awake feeling refreshed and ready to face the day. Ahh, to live just one night from my teens and sleep that peacefully again would be worth just about anything!
Wednesday, March 28, 2012
Hope
One of the things most precious in this world is hope. Quite often, it can be difficult to hold onto if you deal with a chronic illness. So many times during the struggle of dealing chronic pain, we feel a complete loss of hope. We hope for people to believe us, and it doesn't happen. We hope for relief from soul searing pain, and it doesn't happen. We hope for a full night of restful sleep, and again, it doesn't happen. But the one thing we can least afford to lose is hope.
I had almost given up on finding a doctor who could help me. Luckily, I did find a doctor who believed me, but he was uncomfortable in prescribing pain killers that really worked. He did prescribe some medication, but it just took the edge off my pain and allowed me to function most of the time. Two years ago, Dr. S was going to send me to the pain management group at our local hospital. The appointment was made, and I showed up full of hope that finally, my hope for less pain were going to be fulfilled. I got as far as the initial assessment and mentioned that I had seen a pain management doctor once. Everything ground to a screeching halt! They informed me that if you had every seen any pain management doctor, they had to have those records, and my doctor knew that.
I explained to them that I had only seen this other doctor twice, and that all he did was prescribe medication to get me through until I had my back surgery. The office manager told me it didn't matter; the doctor would not see me without those records. I left the office in tears, once again, my hopes had been dashed. Before I went home, I went to my family doctor's office to explain what had happened. The girl apologized profusely for forgetting to request those records. I signed a form giving the first pain management group permission to give out my records, and even watched as the form was faxed to their office. I went home with hope that I would soon have another appointment with our pain management group in town.
And then, the waiting game began. A month went by, and we didn't have the records. Two months, three months, four months, and still no records! At this point, I started calling the office. The woman in charge of records told me that since it had been so long since they had seen me, the charts had been moved to storage and they rarely went to the storage facility. In fact, she stated that they would only go when they had numerous requests. I couldn't believe what I was hearing! I kept calling their office, and I continued to be told the same story. Finally, a year went by, and I gave up hope once again.
After two years, I got angry again, and some of the hope I had lost returned. I called the doctor's office again and demanded to speak with the office manager. She came on the line, and I must admit that I wasn't very nice - at first. I threatened to contact an attorney to sue them for the runaround they had given me about MY records! Much to my surprise, the first words out of her mouth were an apology! She stated that the woman who had been in charge of records had been fired. They discovered that she was telling just about everyone the same story she told me about my records. I explained that they had only seen me twice, and she asked me to hold. A few minutes later, she came back on the line. She told me that my records were still in their computer system and that she would mail them to me that very day!
Finally! I received the records a couple of days later. I immediately took them to my doctor's office and they sent in a new request for an appointment. Within two weeks, I got a call from the pain management clinic. They told me that the doctor had reviewed my scant records, along with the records provided by my family doctor and they were going to accept me as a patient. I had my first appointment two weeks later, and they have been treating me for the last three months. They have helped me so much, and more importantly, they have renewed my hope.
I had almost given up on finding a doctor who could help me. Luckily, I did find a doctor who believed me, but he was uncomfortable in prescribing pain killers that really worked. He did prescribe some medication, but it just took the edge off my pain and allowed me to function most of the time. Two years ago, Dr. S was going to send me to the pain management group at our local hospital. The appointment was made, and I showed up full of hope that finally, my hope for less pain were going to be fulfilled. I got as far as the initial assessment and mentioned that I had seen a pain management doctor once. Everything ground to a screeching halt! They informed me that if you had every seen any pain management doctor, they had to have those records, and my doctor knew that.
I explained to them that I had only seen this other doctor twice, and that all he did was prescribe medication to get me through until I had my back surgery. The office manager told me it didn't matter; the doctor would not see me without those records. I left the office in tears, once again, my hopes had been dashed. Before I went home, I went to my family doctor's office to explain what had happened. The girl apologized profusely for forgetting to request those records. I signed a form giving the first pain management group permission to give out my records, and even watched as the form was faxed to their office. I went home with hope that I would soon have another appointment with our pain management group in town.
And then, the waiting game began. A month went by, and we didn't have the records. Two months, three months, four months, and still no records! At this point, I started calling the office. The woman in charge of records told me that since it had been so long since they had seen me, the charts had been moved to storage and they rarely went to the storage facility. In fact, she stated that they would only go when they had numerous requests. I couldn't believe what I was hearing! I kept calling their office, and I continued to be told the same story. Finally, a year went by, and I gave up hope once again.
After two years, I got angry again, and some of the hope I had lost returned. I called the doctor's office again and demanded to speak with the office manager. She came on the line, and I must admit that I wasn't very nice - at first. I threatened to contact an attorney to sue them for the runaround they had given me about MY records! Much to my surprise, the first words out of her mouth were an apology! She stated that the woman who had been in charge of records had been fired. They discovered that she was telling just about everyone the same story she told me about my records. I explained that they had only seen me twice, and she asked me to hold. A few minutes later, she came back on the line. She told me that my records were still in their computer system and that she would mail them to me that very day!
Finally! I received the records a couple of days later. I immediately took them to my doctor's office and they sent in a new request for an appointment. Within two weeks, I got a call from the pain management clinic. They told me that the doctor had reviewed my scant records, along with the records provided by my family doctor and they were going to accept me as a patient. I had my first appointment two weeks later, and they have been treating me for the last three months. They have helped me so much, and more importantly, they have renewed my hope.
Monday, March 26, 2012
I'm Back!
Hello, my loyal and faithful readers! I hope that you have missed me as much as I've missed you. I am sorry that I was gone for such a long time without an explanation. My computer went on the fritz and it has been in the Computer Hospital for nearly 2 weeks. It is now home and working perfectly, and I am so looking forward to getting back to sharing my life with you. Tomorrow, I will have a new and, hopefully, interesting post for you. It feels good to be back!
Friday, March 16, 2012
In Sickness and In Health
My husband and I celebrated our 20th wedding anniversary on New Year's Eve. It hasn't always been easy, but we've made it when pretty much everyone else thought we were doomed for failure. You see, Dale and I knew each other a grand total of 30 days when we got married. If we were talking about some other couple, I would probably be at the front of the line, saying, "Are you CRAZY! There is no way this will work, and you are making the biggest mistake of your life!". But somehow, against the odds we have survived together.
About twelve years ago, Dale started having problems with his legs. He complained that he was loosing the feeling in them and that it felt like there were helium balloons attached to his feet when he was walking. We didn't think too much of it at the time, but then Dale started falling occasionally. The falls began to increase in frequency, and I insisted that Dale see the doctor, who said he thought it was peripheral neuropathy, and that we would just keep an eye on things.
Not long after this, Dale developed a severe migraine type headache. He kept telling me that he really didn't feel good, but wouldn't go to the emergency room. Within a few hours, Dale's speech became impossible to understand. He was showing all the signs of a stroke and I called an ambulance. Once at the hospital, a battery of tests were run and Dale was admitted. The doctor's told us that he had had a mild stroke. Dale was having problems with both fine and gross motor control and with his speech. He was also having trouble swallowing. We worked with speech therapy, physical therapy, and occupational therapy, and he was soon able to return home.
Dale's legs continued to get progressively worse, and pretty soon, he couldn't walk at all. That's when we got his first wheel chair. For a man who spent 14 years in the army, and who had worked hard his entire life, that wheelchair was an admission of failure to Dale, and he got very depressed from it. I let him have time to grieve what he had lost, and then the tough love kicked in. I told him that feeling sorry for himself wasn't going to change things, and that he could learn to accept that he was the still the person I fell in love with, despite the chair, or he could sit there and feel sorry for himself all alone. Pretty soon, he came to grips with this new part of his life.
As time went on, Dale had what we thought were six more strokes. I learned to watch the signs and symptoms, and I knew when one was coming on before he did. About two years ago, he had another one, and our small hospital here wasn't equipped to deal with it. They sent him to one of the large hospitals in Louisville. We were in for a lot of surprises!
The neurologist assigned to Dale's case did a thorough work up, including CT scans and MRI's. Dr. Frank came in with the results and informed us that Dale had not had a stroke, and in fact, had never had a stroke! We were dumbstruck! Dr. Frank explained that Dale had a hereditary condition called Spino-Cerebellar Ataxia. Neither of us had ever heard of this condition before. Dr. Frank explained that it usually hits in the later 30's or early 40's, which is exactly when Dale started having his problems. In this condition, the cerebellum starts to slowly disintegrate. This is the part of the brain that controls coordination, and this is why Dale lost the ability to walk, had the speech and eating problems, and was loosing his fine motor control. The disease is progressive and there is no cure.
I asked Dr. Frank why it has taken so long for us to get the right diagnosis, and why other doctor's kept telling us that it was strokes. Dr. Frank told us that the condition is pretty rare, and most doctor's don't look for it. The simply see the symptoms which look like stroke symptoms so that's what they call it. Because the disease is hereditary, there is a 50/50 change that our sons will have it as well. When they are a little older, we will have them tested to see if they carry the gene.
So far, I am able to take care of Dale at home, although it isn't always easy. Luckily, he is still able to transfer in and out of his chair by himself. If he has something to hold onto, Dale can even stand, but he cannot take steps. Writing even his name has become almost impossible for him, and he has to use a pen that is thicker than normal. The speech problems come and go, and when it is bad, I can usually understand him. Unfortunately, other people usually can't. One day, Dale had to call our insurance agency. He was having one of his bad speech days, and the person on the other end of the phone hung up on him. But as she was hanging up, she said that it was just some old drunk. I called them back and gave them a big piece of my mind!
It's not easy watching this disease slowly take away the man I married, and I am terrified at the thought of my boys having to go through this. I know that there will come a time when I have to put my husband in a nursing home. Because of my health issues, I will not be able to give him the care that he needs, and this just breaks my heart. It isn't easy, but Dale and I take care of each other.
I live on both sides of the chronic illness issue. I am both a sufferer of chronic pain, and a caregiver to another person with a chronic illness. When I hear other people dealing with a chronic illness say that their significant other left them because they couldn't deal with what is going on, it just makes me furious. I don't understand walking out on someone you love, just because the going gets rough. Dale and I made promises to one another when we married to be there for better or worse, in sickness and in health. We have honored these vows, even though sometimes we both think it would be easier to walk away. No matter how sick Dale gets, he knows that he will always have me to lean on, and I know that I always have him. And my heart breaks for those who don't have the love and support that I do.
About twelve years ago, Dale started having problems with his legs. He complained that he was loosing the feeling in them and that it felt like there were helium balloons attached to his feet when he was walking. We didn't think too much of it at the time, but then Dale started falling occasionally. The falls began to increase in frequency, and I insisted that Dale see the doctor, who said he thought it was peripheral neuropathy, and that we would just keep an eye on things.
Not long after this, Dale developed a severe migraine type headache. He kept telling me that he really didn't feel good, but wouldn't go to the emergency room. Within a few hours, Dale's speech became impossible to understand. He was showing all the signs of a stroke and I called an ambulance. Once at the hospital, a battery of tests were run and Dale was admitted. The doctor's told us that he had had a mild stroke. Dale was having problems with both fine and gross motor control and with his speech. He was also having trouble swallowing. We worked with speech therapy, physical therapy, and occupational therapy, and he was soon able to return home.
Dale's legs continued to get progressively worse, and pretty soon, he couldn't walk at all. That's when we got his first wheel chair. For a man who spent 14 years in the army, and who had worked hard his entire life, that wheelchair was an admission of failure to Dale, and he got very depressed from it. I let him have time to grieve what he had lost, and then the tough love kicked in. I told him that feeling sorry for himself wasn't going to change things, and that he could learn to accept that he was the still the person I fell in love with, despite the chair, or he could sit there and feel sorry for himself all alone. Pretty soon, he came to grips with this new part of his life.
As time went on, Dale had what we thought were six more strokes. I learned to watch the signs and symptoms, and I knew when one was coming on before he did. About two years ago, he had another one, and our small hospital here wasn't equipped to deal with it. They sent him to one of the large hospitals in Louisville. We were in for a lot of surprises!
The neurologist assigned to Dale's case did a thorough work up, including CT scans and MRI's. Dr. Frank came in with the results and informed us that Dale had not had a stroke, and in fact, had never had a stroke! We were dumbstruck! Dr. Frank explained that Dale had a hereditary condition called Spino-Cerebellar Ataxia. Neither of us had ever heard of this condition before. Dr. Frank explained that it usually hits in the later 30's or early 40's, which is exactly when Dale started having his problems. In this condition, the cerebellum starts to slowly disintegrate. This is the part of the brain that controls coordination, and this is why Dale lost the ability to walk, had the speech and eating problems, and was loosing his fine motor control. The disease is progressive and there is no cure.
I asked Dr. Frank why it has taken so long for us to get the right diagnosis, and why other doctor's kept telling us that it was strokes. Dr. Frank told us that the condition is pretty rare, and most doctor's don't look for it. The simply see the symptoms which look like stroke symptoms so that's what they call it. Because the disease is hereditary, there is a 50/50 change that our sons will have it as well. When they are a little older, we will have them tested to see if they carry the gene.
So far, I am able to take care of Dale at home, although it isn't always easy. Luckily, he is still able to transfer in and out of his chair by himself. If he has something to hold onto, Dale can even stand, but he cannot take steps. Writing even his name has become almost impossible for him, and he has to use a pen that is thicker than normal. The speech problems come and go, and when it is bad, I can usually understand him. Unfortunately, other people usually can't. One day, Dale had to call our insurance agency. He was having one of his bad speech days, and the person on the other end of the phone hung up on him. But as she was hanging up, she said that it was just some old drunk. I called them back and gave them a big piece of my mind!
It's not easy watching this disease slowly take away the man I married, and I am terrified at the thought of my boys having to go through this. I know that there will come a time when I have to put my husband in a nursing home. Because of my health issues, I will not be able to give him the care that he needs, and this just breaks my heart. It isn't easy, but Dale and I take care of each other.
I live on both sides of the chronic illness issue. I am both a sufferer of chronic pain, and a caregiver to another person with a chronic illness. When I hear other people dealing with a chronic illness say that their significant other left them because they couldn't deal with what is going on, it just makes me furious. I don't understand walking out on someone you love, just because the going gets rough. Dale and I made promises to one another when we married to be there for better or worse, in sickness and in health. We have honored these vows, even though sometimes we both think it would be easier to walk away. No matter how sick Dale gets, he knows that he will always have me to lean on, and I know that I always have him. And my heart breaks for those who don't have the love and support that I do.
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