Being pissy

I was in a pissy mood last time I wrote. Once in a while I do get pissy, but usually I don’t share it with everybody. I had been to an eye specialist and found out I have to have eye surgery. Scleroderma has given me glaucoma because my veins are too small to relieve the pressure in my eyes. I have lost 95% of the vision in my right eye and a little in my left eye. The first surgery is to cut a window in my right eye and punch a hole in it. Then sutures put the window back and fluid can go out the punched hole. The doctor has to remove the sutures in such a way as to control the fluid so that my eye doesn’t deflate or whatever it would do. The surgery is July 13th and I have about 11 appointments over the next few weeks after the surgery. My doctor wants to do laser surgery on my left eye to reduce the pressure in it. This is not laser surgery to correct vision though. He will only do a partial laser correction of the pressure since there is no protocol for scleroderma and laser surgery. We are flying blind here, pardon the pun. I currently take two types of eye drops to help relieve the pressure in my eyes, but apparently, they aren’t enough. That’s why I was pissy that day...
I should have been pissy yesterday, but I was more resigned. I have congestive heart failure, which is why I take prednisone and letaris. One is to help the lung fibrosis and the other to help the pulmonary hypertension, high pressure in my heart. I am also on oxygen. I saw my heart doctor yesterday and the letaris isn’t helping my heart so I am going on viagra (aka revatio) also. Viagra relieves pulmonary hypertension related to pulmonary fibrosis. It does this by relaxing damaged blood vessels allowing them to widen. This makes it easier for the blood to be pumped through the heart and for the lungs to receive oxygen. My blood ox was in the low 70’s and I now have to be on oxygen all of the time. My heart doctor is not too confident that viagra, along with letaris will help me. I see him again in six weeks and then we will decide if I should go on IV therapy with either Flolan or Remodulin. It is not something I want to do since there are a lot of complications with this type of therapy. I told him that and he told me this was my last option. I cannot have a transplant because I have so many problems that would affect a transplant. Pulmonary hypertension prevents me from having a stem cell transplant. My doctor admitted that if IV therapy worked, it would only buy me some time. It is a tough decision and I have a lot of thinking to do. Quality of life is important to me and if I am miserable, why extend the misery? I also worry about Brian. He would be devastated if I died because of his love for me as his wife. He also depends completely on me for his care and doesn’t like me out of his sight at all. I have to face the reality that I am dying from congestive heart failure brought on by scleroderma. I try to make light of the situation when I talk to him about it because it upsets him. I honestly don’t know what will happen to him or how he will handle it.

Frustration

I do miss my freedom to do what I want, when I want. I love Brian and would not want anyone other than me taking care of him on a full time basis. But I do miss being able to go when and where I want and not adhere to someone else’s time table. Brian is always happy to go with me places but at times it can be difficult. Getting both of us ready can take a lot of time. If I am not moving well, it takes even longer. There is no such thing as “spur of the moment” for us. And as I get worse, it will be even harder to take off and go. So I try to go as much as I can now. Brian and I both have to live in the moment, taking advantage of our time today since we don’t know what tomorrow will bring. I have been having a lot of pain in my legs this past week. Sleeping is difficult and each time that I roll over is painful. Days like this, I just want to be gone. But I can’t. Unless someone fills in for me, I am always on duty. If I had a full time job, I would only have to work 8 hours and then I would have time off. And I don’t have the luxury of just being sick myself. I can’t stay in bed on a bad day. Brian doesn’t feel this frustration as I do as he is happy to sit and watch TV. He gets lost easily when shopping with me. It is ok if I am holding his hand, but if I am in a motorized cart, he constantly gets lost. I haven’t figured it out, but I think if he takes his eyes off of me for just a second, he loses his focus. So he is just happy to stay home where he knows where his is and where the bathroom is. That is another problem...using the bathroom when we are out. Most places don’t have family bathrooms where I can be in there with him. If Brian is nervous, he has to use the restroom a lot and most of the time, he needs me there to help. I would have loved to be able to go out to the casino tonight and forget my cares. My friend, Allison called and wanted me to meet her there. She is single and can go whenever she pleases. Don't get me wrong. I don't want to be single. I would never trade my time with Brian. But lately, I have been going on Sat. evening which is not my favorite time to go but I go because I can. Frustration is probably the number one concern with being a caregiver and living with a chronic illness and that is what I am feeling tonight.

In Sickness and in Health

This Saturday, one of my three favorite nieces is getting married. We are so excited as Jenny and Cliff are a perfect match and his family is just wonderful! This brings to mind Brian and my wedding thirty-eight years ago. We were just kids, 19 and 20. The vows we said were the standard, “take this man/woman in sickness and in health....til death do you part. We said our vows in front of everyone and meant them but not really understanding what they meant. We thought ours would be the perfect life and we were invincible. We both were able to grow up individually and together, and we changed along the way. Chronic illness has changed us more. The man I married is no longer that same person. The woman he married is no longer the same person either. If we were going through our illnesses when we were first married, our marriage may not have survived. The first few years (sometimes only months) of a marriage have the bloom of romance and hope. A marriage cannot sustain the romance of newlywed love. Every day life gets in the way. Brian and I were committed to our marriage and that commitment got us through the times we were both too busy building our careers or with the kids to have the time or passion for each other. Luckily those periods were short and we were able to get the passion back in our marriage. For several years Brian worked nights and I worked days. It was work to find time for each other and our love, but we did it. We would often play pranks on each other. Once we had ordered half a corpse made out of foam, etc. to use for our Halloween party. I was at work when it arrived. Before Brian left for work, he put it in our bed sitting up. We didn’t have a lamp that worked off a switch in our bedroom, so I always walked into the bathroom to turn on the light to see in the room. I was shocked when I saw the dummy, thinking someone was in our room. I called Brian at his work and gave him hell. He was laughing so hard I don’t think he heard me. No matter what, we always have shared a sense of humor. Our laughter still gets us through some tough days. Our ability to adjust to changes in each phase of our marriage, our commitment to each other and to our marriage, and our respect for each other have made our marriage strong. That strength has been what we have relied on to support each other in our disease processes and to appreciate the people we have become, rather than mourn the people we once were.

Time Flies

We moved in with Kim and Wayne the first of April. We had been thinking about it for a while and while it was a good decision, it was a traumatic decision for me. Brian and I were worried that since the new expensive pills don’t seem to help much, if something happened to me, Brian would not be able to call anyone for help. Brian and I are best friends with Kim and Wayne, even though we are relatives too. But moving meant putting our things in storage, this time maybe permanently. It meant that we had to admit that we needed help and even harder, accepting that help. It took me awhile to come to terms with making this difficult decision. Brian had no problem with it as we are both as comfortable at Kim and Wayne’s as we are at out own place. Brian has been very relieved and happy since we have moved. Kim cooks us a great dinner each evening and we have pretty well taken over the front room. Brian still watches all his favorite TV shows and I have a wonderful craft area in the bay window with lots of sunlight. It is nice not to have the pressure and the upkeep of our own place and we can concentrate on taking care of each other. Kim and Wayne understand the demands of being a caregiver and about once a week they make a point of being here for Brian so I can get out on my own. I am a night owl, which makes it the easiest time to leave Brian, when he is sleeping. I usually go to Thunder Valley Casino about 11 p.m. and spend my time watching and visiting with other night owls like myself. I do love to gamble, but being on a fixed income, I am limited to what I can play. Money isn’t the issue for me. No amount of money to gamble would satisfy my desire to forget my daily life. It doesn’t matter; just being there is an escape for me. I don’t take my oxygen and only use my crutches on a really bad day and just pretend my life is as normal as yours. I am happy to watch others, ( I love to people watch at Disneyland, too). Others in my situation may use alcohol to numb their feelings and quiet their thoughts but I have never been a drinker. Waking up the next day with a hangover doesn’t appeal to me. When I come home, I know that nothing has changed and I am tired from a long night. Not having to think, feel and deal with living with the stress and emotions of both of us having a chronic illness for those few precious hours helps me to keep an upbeat attitude around Brian,. It helps with my sense of humor and I am ready (albeit, reluctantly), to face a new day. I would like to be the best caregiver that Brian could possibly have which is difficult when dealing with my own issues. Thank heavens for the help that Wendy, Kevin, Kim and Wayne and even the grandkids give to us. I know I am not a super duper caregiver and not without my faults. Poor Brian is stuck with me 95% of the time. We have discussed having him go to a day center for Alzheimer’s patients for a change to his daily life, but at this time he would rather be with me. It is hard to watch Brian as his disease progresses but we try to keep his spirits up. This is a disease where it is harder on the people around him than on Brian himself. Blissfully, he isn’t aware of a lot of the things we see and his needs and wants are taken care of. His daily life is as enjoyable as we can make it for him.

Finally!

After seven years of wanting to take the Grandkids to Disneyland, we finally went this past week. Joshua, 7 and Melissa, 5, were at an age where they really had fun and will remember the trip as they grow older. Kim, Wayne, Stephanie, Kevin and Wendy, Brian and I and Joshua and Melissa left last Saturday. We stopped in LA and visited Catherine, Mitch, Claudia and J.P. and Barbara. We had a nice afternoon visit but the kids were eager to get on to DLand, their first time there. We were able to go to the park that evening and then Sunday, Monday and Tuesday, coming home on Wednesday. The weather was beautiful the time we were there, only getting bad as we were leaving. Joshua was in the park for 16 hours on Monday, not bad for a seven year old. We took my electric wheelchair and it certainly made my trip so much easier. I was able to come and go as I pleased and get my own churros, etc. We put Brian in a wheelchair that people took turns pushing so that his visit was made much easier for him. He went on everything, even making Kim, who hates it, go on the Maliboomer. Brian keeps saying what a wonderful trip it was and he can't wait to go back. It is so much fun seeing Disneyland through little children's eyes, and the fact that they were our grandchildren made it so special. Wendy and Kevin haven't been there since 1995 and 1996 and were amazed at the changes. We went every year when they were growing up and they decided they were tired of going and didn't join us in later years. They were very excited to be going again and had a great time. We couldn't have gone without Kim and Wayne's help and we are so grateful. We even had a Brian Vestal sighting for two days. He is always a lot of fun and added a lot to our trip. For those of you not in the know, he does the Vonage commercials and has had some other parts in shows such as Prison Break. When I got out of my wheelchair to go on the Monster's Inc. ride, Brian started clapping his hands and yelling, "It's a miracle, she can walk!" leaving a lot of people laughing, including me. I plan on making the grandkids a scrapbook of our trip. The memories will last us a lifetime!

Stem Cells

I am so excited that President Obama is lifting the ban on stem cell research! Stem cells have the remarkable potential to develop into many different cell types in the body. Serving as a sort of repair system for the body, they can theoretically divide without limit to replenish other cells as long as the person or animal is still alive. When a stem cell divides, each new cell has the potential to either remain a stem cell or become another type of cell with a more specialized function, such as a muscle cell, a red blood cell, or a brain cell. Stem cell transplants have helped several people with scleroderma improve their quality of life. I have always thought that a stem cell transplant would be my saving grace. But, according to my doctors, this is not to be. Pulmonary Hypertension has made a stem cell transplant impossible for me. My next option, I thought, was a heart/lung transplant. I am not sure I would go through the process, but I did think it was an option. But my doctors say that my age, pulmonary hypertension and other things make a heart/lung transplant not an option for me. It is possible that I may be able to undergo a lung transplant. Lung Transplants, in most cases, are the last resort. This is due to it being a very invasive procedure and requires a lung donor. This procedure is also extremely expensive compared to other treatments. Patients with pulmonary insufficiency due to scleroderma have long been considered suboptimal candidates for lung transplantation. In recent studies, patients with scleroderma who are recipients of lung transplantation experience similar rates of survival 2 years after the procedure compared with those with IPF or IPAH. In carefully selected patients with scleroderma who have end-stage lung disease, lung transplantation may be a valid life-saving therapeutic option. My dose of Letaris has been upped to 10mg as of last week. After five months on Letaris, I haven’t seen any relief from my breathing problems. This is discouraging as results can usually be seen after three months. I have a sinus infection that may be the result of a side effect of letaris (sinusitis, nose congestion) or a cold I had two weeks ago. I have emailed my doctors to see what they think. Brian is doing better with his depression. The hope that a cure will be found is fueling his optimism now and I keep encouraging that hope as it is very real.

Brian's day

Brian lost his balance this morning and fell. He had a hard time getting to the bathroom and then came back to bed. Later, when we got up, he was ok. He had a mild earache the other day that aspirin cleared up easily, so I thought his loss of balance might be from an inner ear infection. But inner ear infections usually are accompanied by dizziness and Brian wasn’t dizzy. Loss of balance and muscle weakness is a problem with Alzheimer’s so I have to assume this is another symptom that Brian is experiencing. The past month or so, Brian has also been experiencing rapid jerking movements of different parts of his body as he is going to sleep. This lasts twenty minutes and longer. They are called myoclonic jerks and often develop in patients with multiple sclerosis, Parkinson's disease, Alzheimer's disease, or Creutzfeldt-Jakob disease. Myoclonic twitches or jerks usually are caused by sudden muscle contractions, called positive myoclonus, or by muscle relaxation, called negative myoclonus. It isn’t painful and doesn’t seem to bother him. It is interesting to watch as the jerks occur several times a minute in different places. There are many different types of nyoclonus and Brian seems to have the Sleep myoclonus that occurs during the initial phases of sleep, especially at the moment of dropping off to sleep. Some persons with sleep myoclonus are rarely troubled by, or need treatment for, the condition.
The specific mechanisms underlying myoclonus are not yet fully understood. Scientists believe that some types of stimulus-sensitive myoclonus may involve overexcitability of the parts of the brain that control movement. These parts are interconnected in a series of feedback loops called motor pathways. These pathways facilitate and modulate communication between the brain and muscles. Key elements of this communication are chemicals known as neurotransmitters, which carry messages from one nerve cell, or neuron, to another. Neurotransmitters are released by neurons and attach themselves to receptors on parts of neighboring cells. Some neurotransmitters may make the receiving cell more sensitive, while others tend to make the receiving cell less sensitive. Laboratory studies suggest that an imbalance between these chemicals may underlie myoclonus. This is understandable since Alzheimer’s is a disorder that attacks the brain's nerve cells, or neurons, resulting in loss of memory, thinking and language skills, and behavioral changes. Brian is depressed tonight as he told me he wonders why this had to happen to him. When he gets this way, I remind him that a cure is just around the corner. I only hope it is a short block.