It has been a while since my last post, so I wanted to take a little time to update how I’m feeling and how things are progressing. The past month has been difficult. Not only have I had to overcome pain, weakness and fatigue but also personal tragedy. My father, who lived a long life to age 92, passed away. He was a veteran of World War II and had been living close to me in assisted living for the past three years. He had dementia so the last years were tough ones for all of the family. But hopefully we provided for him as best we could to keep him safe and comfortable.
For me, it’s been tough just getting through each day. I seem to stumble around a lot due to balance issues and my pain level has been high. At the same time, the pain AND weakness in my muscles has been on the increase. And on top of that, my neuropathic pain has been getting worse. The neuropathic pain is mostly in my hands, feet and along my spine. It consists of tingling, itching, burning and, at times, stinging pain that can progress to very painful stabbing and shooting pain.
For those who have not read my other blogs, I suffer primarily from a paraneoplastic neurological syndrome that was caused by my history of Stage IV melanoma. It is a form of autoimmune disease where the body fights itself beyond fighting the cancer. I have a myriad of symptoms and it has manifested itself in a number of ways including myelitis, myoclonus, and lots and lots of pain and weakness.
My days go something like this: Get up, get ready, eat, work at the computer for a couple of hours, eat, nap, work a little while at the dining room table, nap, eat, check the computer, and then go to bed. Pain is now pretty much all over my body but certain places seem to get in the way the most. For starters, my hands, arms and legs hurt and just won’t do exactly what I what them to do. My elbows and shoulders hurt a lot. These pains prevent me from typing as much and how I want to and impact my reach and how effectively I can do the normal tasks of daily living. Everything seems to take a lot of effort and planning.
My pacemaker seems to work well but I sometimes find myself somewhat short of breath at odd times. Sometimes it comes when I might expect to have a little shortness of breath like when I’m trying to do something or get somewhere and am exerting a lot of energy. But sometimes it can come when you don’t expect it, like waking up at night feeling like you have to grasp for air. It almost always goes away pretty quickly but it’s something new and worrisome.
Also, I seem to experience a lot more lightheadedness lately. So, I have to be careful as I move around and especially as I get up from lying down or standing from a sitting position. I try to check for orthostatic hypotension but I can’t seem to get any readings that show a significant drop. I do get readings showing a drop of 10-15 points sometimes, sometimes get almost no change and sometimes get a bigger change – like 20-30 points. But it’s erratic and more often than not, I really don’t record a lot of change.
Talking about blood pressure. I get morning readings that are all over the place. My morning blood pressure over the past three months has ranged from a low of about 90 / 60 to a high of 160 / 100. The most common reading is about 120 / 85 but as the range indicates, at times it can be just about anywhere. I can usually tell when it is very low or very high but it’s hard to tell when it varies in between.
I now have a power chair that I use as much as I can. I can still get around with a cane, so I don’t confine myself to the chair. We have also purchased a van that can accommodate my chair. I think, in the long run, that this will make it easier on my wife. It is hard for her to have to get equipment in and out of the car for me to use and when I can’t walk, it is very hard for her to have to push me in a wheelchair. With the power chair, I am much more independent. The main problem is finding a van accessible parking place everywhere that we want to go.
We have a number of trips and visits planned for Spring and Summer. And we get to see our granddaughter frequently which has been a blessing. All things seem better when you have a little one around. This month I plan to go to Richmond for the dedication of a headstone for one of my forefathers who fought for the Confederacy. He died in 1862 during the Peninsula Campaign and was buried in an unmarked grave. We have had a VA headstone placed on his grave and will participate in a ceremony that will include some re-enactors to dedicate the new headstone.
In June I will go back to the Mayo Clinic for a consultation with the autoimmune neurologists. We have enjoyed our trips to Minnesota and are looking forward to going back. At the end of June, my grandson, daughter and son-in-law will arrive from Belfast for a one month visit. We have a short trip to Orlando planned while they are here. In August I plan to attend the National Encampment of the Sons of Union Veterans in Georgia. So, I need to plan well to try to keep my body in line to handle these trips.
I continue to watch my diet and practice some alternative pain management techniques. And, I continue to try to keep the number of medications I take to a minimum. Have to take some drugs to manage some major symptoms but I do like to try to stay as cognitively alert as I possibly can in spite of the pain I have.
I hope to post some more this week and I am trying to work on some more interesting blogs on my past experiences with chronic disease as well as more tips on how to deal with chronic disease once it becomes part of your life. Hope you got something out of today’s post. Look forward to more productive days and more writing ahead.