Reading it, I'm not sure if this blog serves as a chronicle of events or as a cathartic exercise as MS progresses on its vial journey of slow paralysis.
I do know I've neglected writing in my blog for some time. The reasons are due to my feelings that fluctuate between hope and despair. At times of hope, I am reading articles about research that promises that a cure, or at least a treatment, for PPMS is just around the corner. I start to dream about a me free of MS and it's creeping
paralysis. I'm walking and cooking and baking and visiting Alex
and Michelle and working and enjoying being a wife and doing all the
other things I used to do to. At times of despair, I'm reading other people's blogs and perusing face book in an attempt to mentally escape the MS and it's creeping paralysis. Mostly, I have not written in my blog because I'm sick of my own thoughts. Sick of feigning a happy attitude where I use humor to dull the sharp reality. Sick of writing about the optimism that sometimes arises only to be beaten back down. I'm sick of writing the words that bring out the tears. The tears that do not wash away the MS and it's creeping paralysis. The MS that has stolen my perfect little life. The life that Chris and I had designed for our own "happily ever after". Instead, I've been escaping into other people's lives and retreating into the world created by online articles. But I think I've cheated myself by not chronicling my most recent event because what happened changed everything.
I'd been happily adjusting to my new normal of buzzing around
and Michelle and working and enjoying being a wife and doing all the
other things I used to do to. At times of despair, I'm reading other people's blogs and perusing face book in an attempt to mentally escape the MS and it's creeping paralysis. Mostly, I have not written in my blog because I'm sick of my own thoughts. Sick of feigning a happy attitude where I use humor to dull the sharp reality. Sick of writing about the optimism that sometimes arises only to be beaten back down. I'm sick of writing the words that bring out the tears. The tears that do not wash away the MS and it's creeping paralysis. The MS that has stolen my perfect little life. The life that Chris and I had designed for our own "happily ever after". Instead, I've been escaping into other people's lives and retreating into the world created by online articles. But I think I've cheated myself by not chronicling my most recent event because what happened changed everything.
I'd been happily adjusting to my new normal of buzzing around
my house in the "jazzy blue". I was resolving myself to having use of
only my right hand, even being thankful of my situation.
only my right hand, even being thankful of my situation.
I was trying to be grateful for what I still had. After all, that's what all
the blogs I'd been reading told me to do! I was being grateful that I
could still do Zentangle and feed myself and take care of basic
grooming all by myself. But then, in one fateful moment, it all
changed. It was September 6, 2015. I was happily getting ready for
Michelle, Alex and Allison to take me to my dad's 92nd birthday party. Michelle was on babysitting duty, but she had gone to Market Basket to get some fruit to bring to the party. I assured her I would be fine while she was gone, but all at once, it wasn't fine. I fell out of my wheelchair reaching for clothes. I lay on the floor waiting for her to return. When she came back, I called to her for help. She tried to get me back into my chair, but the pain was too great. She at least got me into a sitting position. Allison came along shortly and the two of them got me onto the bed where I thought I would find comfort. They must've finished getting me dressed; I don't remember now. But I do remember they were trying to get me into the car and the pain was too great. I realized we could not go to the birthday party. So I went back to bed, and things went on around me as they had before in my then normal world. Except there was this lingering pain in my shoulder. I refused any advice to go to the doctor. I could actually find some
comfortable spots where I wasn't feeling any pain. Allison, with her experience from working at an orthopedic practice along with having the book smarts she gained in achieving a college degree as an athletic trainer, foreshadowed the possibility of a dislocated shoulder and all its ramifications. I brushed off the possibility, insisting it was only a pulled muscle. At that time, in retrospect, I think it really was only muscle because Chris took me to get my hair cut. I remember that because it was the day after my birthday, October 27. I don't recall there being too much pain then. But in the next few weeks the pain became agonizing and was keeping both me and Chris awake at night
as I was crying in pain. He took me to the doctor who ordered X-rays and then determined that there was a fracture in my collar bone. The only thing we could do was rest and it would heal on its own. On Thursday November 19, (I don't actually remember the date. It is all relative to Thanksgiving so I just looked at the calendar) we were back to the Drs. office. This time I saw the Dr. on call. She sent us downstairs for x-rays again and then we we saw the orthopedic PA. She declared my shoulder was dislocated and, because of the pain I was in, told me to see Dr. Tom, the orthopedic Dr. She called him to make the arrangements. He was at the hospital at that time so he told
her to have us meet him there. We went to St Joes hospital where he quickly verified it was indeed dislocated. He surmised that the muscle spasms from MS had actually pulled the arm out of the socket. After viewing the X-ray, he further declared that the socket was broken and I would need surgery to repair it. He would get some kind of bone something and it would be there the next day, Friday. So he admitted me to the hospital, and the surgery was early on Friday morning. Everything was going well and I was soon discharged. The events that ensued are a blur to me now. I'm pretty sure I came home to a hospital
bed in my bedroom. The visiting nurse called to set up anappointment, but I told her I wouldn't need her; I had a history of these nurses coming in only to tell me there was nothing they could do further because of the MS. I didn't want to hear this again. Chris tells me we had thanksgiving dinner just the two of us as planned. I don't remember it at all. The next day I was feeling really bad. I don't remember whether the nurse called us or we called her, but she came. I had a temperature and whatever else that prompted her to tell Chris I needed to go to the hospital. I remember being taken outside, seeing Debbie and calling for her. I remember the ambulance ride, but that is where it ends for me. Evidently, I had developed an infection called cdiff from the surgery. I know this was Friday because my kids tell me they went to the holiday stroll, but Chris called them to come back because I had taken a turn for the worse. I only know the rest of the story from what I was told later. I was, evidently, in a coma. The infection had gotten worse and I would need surgery or I would die. The story tells of family meetings, a surgery, and a weeklong stay in ICU where my husband and daughter pleaded with me to wake up and family and friends paraded through to give me prayers. When I did wake up, I found the shoulder pain mostly gone and an ostomy bag hanging off of me. The infection was so bad they needed to remove my large intestine. I spent another week in the hospital, now recovering from a surgery that had nothing to do with my shoulder or my MS. I missed all of Chanukah. My husband and children stayed with me as much as they could. I Finally got to go home. I had a hospital bed. After 31 years of marriage and cuddling with my husband, we were relegated to separate beds. The romance was also cut short as my husband would be the primary one to take care of my poop bag. I guess with some hospital stays, you get a visiting nurse who will check on you. My visiting nurse came, and I cried at my situation. I was now a person with advancing MS and an ostomy bag. It was impossible for me to take care of myself. I did not want to live like this. So this nurse recommended us to the hospice program. The nurse from hospice came to determine if I was indeed in need of hospice care. She explained how hospice is there to make your comfortable. Under their blanket, I would be provided with medication and most anything else I required to be comfortable. We made a plan. A nurse would come once a week, and an aid would come 3 times a week. Hospice would pay for all my medications that were relative to my condition. On my end, I could not actively seek extra care. Hospice provided for me as long as I was in a hopeless condition.
the blogs I'd been reading told me to do! I was being grateful that I
could still do Zentangle and feed myself and take care of basic
grooming all by myself. But then, in one fateful moment, it all
changed. It was September 6, 2015. I was happily getting ready for
Michelle, Alex and Allison to take me to my dad's 92nd birthday party. Michelle was on babysitting duty, but she had gone to Market Basket to get some fruit to bring to the party. I assured her I would be fine while she was gone, but all at once, it wasn't fine. I fell out of my wheelchair reaching for clothes. I lay on the floor waiting for her to return. When she came back, I called to her for help. She tried to get me back into my chair, but the pain was too great. She at least got me into a sitting position. Allison came along shortly and the two of them got me onto the bed where I thought I would find comfort. They must've finished getting me dressed; I don't remember now. But I do remember they were trying to get me into the car and the pain was too great. I realized we could not go to the birthday party. So I went back to bed, and things went on around me as they had before in my then normal world. Except there was this lingering pain in my shoulder. I refused any advice to go to the doctor. I could actually find some
comfortable spots where I wasn't feeling any pain. Allison, with her experience from working at an orthopedic practice along with having the book smarts she gained in achieving a college degree as an athletic trainer, foreshadowed the possibility of a dislocated shoulder and all its ramifications. I brushed off the possibility, insisting it was only a pulled muscle. At that time, in retrospect, I think it really was only muscle because Chris took me to get my hair cut. I remember that because it was the day after my birthday, October 27. I don't recall there being too much pain then. But in the next few weeks the pain became agonizing and was keeping both me and Chris awake at night
as I was crying in pain. He took me to the doctor who ordered X-rays and then determined that there was a fracture in my collar bone. The only thing we could do was rest and it would heal on its own. On Thursday November 19, (I don't actually remember the date. It is all relative to Thanksgiving so I just looked at the calendar) we were back to the Drs. office. This time I saw the Dr. on call. She sent us downstairs for x-rays again and then we we saw the orthopedic PA. She declared my shoulder was dislocated and, because of the pain I was in, told me to see Dr. Tom, the orthopedic Dr. She called him to make the arrangements. He was at the hospital at that time so he told
her to have us meet him there. We went to St Joes hospital where he quickly verified it was indeed dislocated. He surmised that the muscle spasms from MS had actually pulled the arm out of the socket. After viewing the X-ray, he further declared that the socket was broken and I would need surgery to repair it. He would get some kind of bone something and it would be there the next day, Friday. So he admitted me to the hospital, and the surgery was early on Friday morning. Everything was going well and I was soon discharged. The events that ensued are a blur to me now. I'm pretty sure I came home to a hospital
bed in my bedroom. The visiting nurse called to set up anappointment, but I told her I wouldn't need her; I had a history of these nurses coming in only to tell me there was nothing they could do further because of the MS. I didn't want to hear this again. Chris tells me we had thanksgiving dinner just the two of us as planned. I don't remember it at all. The next day I was feeling really bad. I don't remember whether the nurse called us or we called her, but she came. I had a temperature and whatever else that prompted her to tell Chris I needed to go to the hospital. I remember being taken outside, seeing Debbie and calling for her. I remember the ambulance ride, but that is where it ends for me. Evidently, I had developed an infection called cdiff from the surgery. I know this was Friday because my kids tell me they went to the holiday stroll, but Chris called them to come back because I had taken a turn for the worse. I only know the rest of the story from what I was told later. I was, evidently, in a coma. The infection had gotten worse and I would need surgery or I would die. The story tells of family meetings, a surgery, and a weeklong stay in ICU where my husband and daughter pleaded with me to wake up and family and friends paraded through to give me prayers. When I did wake up, I found the shoulder pain mostly gone and an ostomy bag hanging off of me. The infection was so bad they needed to remove my large intestine. I spent another week in the hospital, now recovering from a surgery that had nothing to do with my shoulder or my MS. I missed all of Chanukah. My husband and children stayed with me as much as they could. I Finally got to go home. I had a hospital bed. After 31 years of marriage and cuddling with my husband, we were relegated to separate beds. The romance was also cut short as my husband would be the primary one to take care of my poop bag. I guess with some hospital stays, you get a visiting nurse who will check on you. My visiting nurse came, and I cried at my situation. I was now a person with advancing MS and an ostomy bag. It was impossible for me to take care of myself. I did not want to live like this. So this nurse recommended us to the hospice program. The nurse from hospice came to determine if I was indeed in need of hospice care. She explained how hospice is there to make your comfortable. Under their blanket, I would be provided with medication and most anything else I required to be comfortable. We made a plan. A nurse would come once a week, and an aid would come 3 times a week. Hospice would pay for all my medications that were relative to my condition. On my end, I could not actively seek extra care. Hospice provided for me as long as I was in a hopeless condition.
So there it was again, hope vs despair. Only now it's simply hopelessness.
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