It's Been 11 Long Months

Wow! It has been 11 long months since I last posted anything. In case you don't know me personally and, therefore, don't know what has been going on for the last (almost) year, I will try to fill in the blanks. I know, maybe most don't really want to know--but, in any case, here goes.... Shortly after my last post--just after Thanksgiving, in fact--my husband, Steven, started to say he just wasn't feeling well. He ached all over and was tired--a lot. His left leg started to throb just behind his knee. The pain was incredible, keeping him up a night. Of course, I tried to comfort him during the night, and he apologized for keeping me up, or waking me up during the night when he would get up and stand by the wall to straighten up his leg in the hope of stopping the pain. Or, getting up to take painkillers. One day, he came home from work with what appeared to be a rash around his ankle, which was also swollen. While the swelling was common, due to a broken ankle many years ago, the "rash" was something entirely new. When he came home, he said that the "rash" was actually small broken blood vessels and nothing to worry about. He also said that they ran some other tests and it appeared that he may be diabetic. The doctors at Medpoint advised him to consult his family physician, to which he replied that he really didn't have a family physician and hadn't been to see a doctor in quite a few years (other than a medpoint). The doctor there asked "why not?" Steven told him "because I have not been sick". Finally, he got an appointment with a family physician. She ran some tests. It turned out that he had diabetes, high blood pressure and Hepatitis B. Of course, he immediately began a diabetes diet and medication for the high blood pressure and Hepatitis. But, the pain in his legs persisted. He also developed nephrology,which, for those who haven't experienced it, is a loss of control of the feet and legs. This made it very, very difficult for him to walk. Nevertheless, he continued to try to work and shop for Christmas presents--just trying to be normal. We made it through Christmas--which was, I admit, wonderful. There are pictures to prove it. Our oldest daughter was married shortly before, so we had a huge dinner at her home with the grandchildren, Steven's mother and sister, youngest daughter and son-in-law's parents. It was hectic, non-traditional meal (no turkey, stuffing, but Hungarian and American food). But, we were all together and, I must say, it was ...well, you get the picture. In January, the 17nth (Yes, I remember the date...) to be precise, Steven called and said I was not to worry, but the doctor told him to go immediately to the hospital. She thought he might have Gillian--Barre syndrome, which can cause paralysis if left untreated. I was NOT to leave work and go to the hospital--he would probably only be in for a day or so. After they ran more tests, they said he really had to get his diabetes under control--which they did. Also, they decided he didn't have Gillian Barre after all, but they thought he should have therapy for the nephrology. Also, he had a rapid pulse, so they transferred him to the cardiology floor. Then, he was transferred to the rehab floor for physical therapy. After he came home, we followed all the doctor's instructions. He followed a diabetic diet, took his medication. After many adjustments in his medications and many doctor's visits, he did improve slightly. He used crutches to get around, but really couldn't do much. One Saturday night, he had a rough time getting upstairs to go to bed. His blood pressure shot way up and he had completely lost control of his legs. He barely made it up the stairs with my help. I took his blood pressure after he got upstairs. It finally dropped. We went to sleep. I got up on Sunday and made breakfast. He came downstairs with effort, but seemed better. He said he had trouble with his arm. I gave him his breakfast. He said that he wanted to call our kids and his Mom. He wasn't feeling well, but knew that I had to go to work that day. While I was getting my breakfast, he called and left messages for them all, saying that he was sending me to work, but that he might have to have one of them take him to the hospital later. When I heard him, I talked to him and said "Wouldn't you like to have me stay with you--just in case?" He agreed. I noticed that his voice seemed slurred, but he said he was just really tired. When our oldest daughter called, she told him to give me the phone--which he did. She told me "take him to the hospital--NOW--he's slurring his words." We both thought he might have had a stroke. Turned out we were right. After another week in the hospital, he was diagnosed w/a rare disease called Polyarteritis Nedosa. The veins in his body were thickening and his blood couldn't get through. There was a treatment for it, though. He'd have to undergo it at a different hospital, though. The treatment took another 2 weeks. They also said he needed more physical therapy. Alas, his insurance wouldn't pay for him to go to a rehabilitation facility. He did have a visiting nurse, though to help w/physical therapy. He was discharged and came home. Again, we did everything we were supposed to do. He had some improvement, but still couldn't get around without a walker. We also moved him to a downstairs bedroom because he couldn't get up and down stairs. One day, about 2-3 weeks after he got home, I was in a training class at work. The class was almost 4 hours long. After I got out of the class, I decided to take my afternoon break, 2 hours late. A co-worker from my department came and told me that I probably should call home. My husband had called 3 times. I couldn't believe that nobody had come to get me out of the class, but, I called home. Steven asked if I could come home and take him back to the hospital. His blood pressure had shot up, he had called the doctor, and he really felt lousy. I, of course, raced home. It turned out that he had also called our youngest daughter, who was also on her way to take him. She followed us to the hospital. After a couple of hours in the emergency room, he also complained of stomach pain. He was having a gallbladder attack. The following week, he had his gallbladder removed. The surgery went well, but he developed a fistula. To make this very long story short, things went downhill from then on. Due to the fistula, he needed to be transferred to yet another hospital, four hours away from us. We made trips to visit during the week and on weekends. I cannot tell you how difficult it is to see someone you love go through this. Every time he had some improvement, he had a setback. He had C-dif--twice--highly contagious. We had to wear a gown and gloves every visit. On a Wednesday, I got a call--my daughter was coming to get me--they were taking him to intensive care. They wanted to intubate him and sedate him to give his body a chance to heal while they also put him on a slow 24 hour a day dialysis. He had been in constant pain from the fistula. Also, his kidneys were not working and they thought the dialysis would help. We stayed with him until they put him out. It was so hard to leave him there again, but there really wasn't anything we could do for him. On Saturday, my oldest daughter and I went back down. He was awake and well enough to eat a little broth. Plus, my sister and her husband got to visit with him. When we got down there, he asked me (typical) "Aren't you supposed to be at work?" "What are you girls doing down here?" But, he kind of smiled when he said it--we even joked. Our daughter said "Gee, Dad, I don't know. We were in the neighborhood and figured you are in intensive care. What the heck, why don't we pop in for a visit?" We talked over treatment with his doctors--stayed for a few hours. When we left, I remember that we told him we loved him. I went back and hugged him--lightly--told him I loved him and would see him later. We had decided that I would come back and go to work. He seemed to be doing better. During the next few days, he got to eat popsicles and broth. His nurses and doctors seemed optimistic. On Tuesday, they moved him out of ICU. His nurse said she couldn't believe how much he had improved. We decided it must be the popsicles. I talked to him on Wednesday. He ended with the usual "have a wonderful day--love you." Of course, the other shoe had to drop. On Thursday morning, I was up early, as usual. Doing the usual--e-mail, Facebook, coffee, breakfast. Planning to call Steven just before going to work. The phone rang--I remember thinking maybe he had decided to call me first, before I could call him. It was his nurse. There was a problem. Mr. Sharp's heart had stopped and they were trying to get it going again. She would call me back. I asked her to please call my daughters and I may have said we were on our way down. Then, I called my oldest daughter. She didn't answer, so I left a message, thinking she was probably talking to the nurse. I called our youngest daughter. She was actually on the phone w/the nurse and the doctor. She told me "they got it started again" Thank God--I hung up and called our oldest. She was upset that they hadn't called her first--she was supposed to be the medical contact. We hung up. I called my father-in-law and my mother-in-law (they are divorced)to alert them. Right after I got off the phone with them, the doctor called me and explained that they had done everything they could, but his heart had stopped again and he was gone. They had many people working on him, but he had made it clear that he didn't want any extreme measures to be taken, i.e. life support. Of course, I called our daughters and family back right away. It was the saddest thing I've had to do. So, my life has changed--again. While I realize that my Steven is no longer sick and in pain, I miss him. I have gotten past the point of sleepless nights, although I sometimes sleep for awhile on the couch and wake up in the middle of the night thinking it is time to get up, I made it through summer and into the fall. The last few months have made me stronger. I am more independent and, at times, I can honestly say that I am enjoying my life. If that sounds awful, I'm sorry. But, after what I've been through, enjoying the blessings that I have--my family, my friends, waking up, just living and breathing every day...well, that is amazing. I have made some changes around here and am definitely getting used to my life. I rearranged my kitchen. Cleaned closets, learned to use the hedge trimmers, lured a bat out of my house, and, oh yes, acquired a cat. The cat has been a source of fun for me--I love animals and haven't had a pet in quite awhile. Also, I eat when I want to, go out when I want to and watch what I want to on TV. Chick flicks, NFL, college football (GO IRISH), golf, basketball, baseball. Also, I put a TV in the bedroom. When I can't seem to sleep, it helps me to sleep--kind of like white noise. I think just keeping busy helps. Well, I know this in ridiculously long--I'll stop for now. Who knows when I'll write again. Maybe when the fancy strikes me.