Time

Wayne and Kim and I are on a quest for information. If something should happen to me tomorrow and I needed my oxygen, Kim and Wayne don’t know how to use my oxygen tank. So I am writing down all the info I can for “in case of” and we are searching for other available help for Brian and I. Kim and Wayne go back to school the middle of next month. I may need some help for myself and for Brian soon, especially when I have doctor appointments. So we are finding out what community services are available to us. It has been almost a year since I was diagnosed with Pulmonary arterial hypertension. My doctor and I knew I had it before my heart cath but I put off the cath as long as I could. My DLCO on my pulmonary function tests a week a go is down, consistant with the prognosis for my pulmonary hypertension. I have used up almost a year of my time already. Time flies when you are having fun! So we are trying to get things in place for the care and help we will need in our future.
I have no problem talking about myself and my prognosis and what I will need. But it is so heart breaking to talk about Brian, my love and my soul mate. I had figured I would take care of him to the end of his disease process but that probably will not be a reality for me. I promised him I would take care of him. He is able to deal with Alzheimer’s because he knows I will take care of him. I pray for a cure or a treatment that stops the Alzheimer’s process for Brian. And I pray for time so I can take care of him.

Anniversary

Brian and I celebrate our 38th anniversary this Friday, June 19th. As always, it amazes me that we have been married that long, twice as long as I was single. It amazes me that we knew what love was when we married as we were such young kids with no experience outside of our families. It amazes me that our love has endured for all these years. I think waiting five years to have kids helped us to establish a life together and to fully explore our love for each other. We have always made our marriage a priority, much to Kevin’s amazement that we would want to spend time alone, away from him. He would call his Nana if we were going away and complain and then stay with her and Papa and be spoiled all weekend. Wendy was happy to see us go; I guess she threw the best parties then!
When we were married, videos were an unknown. We tape recorded our vows and somewhere in storage is that tape albeit damaged by now. Cellphones were unknown as well and 8 tracks were in vogue. We bought a huge stereo with 8 trak cabinet only to have 8 traks phase away two years later. We also bought a beta which has the same history as the 8 trak. The first time we got HBO was amazing to us too. No commercials! Whodathought? Lamaze was big...it had to be thought up by a man...giving birth, no drugs...what were we thinking? And I did it again! We saw Elvis in Tahoe the year before he died. I had tried for 3 years to get tickets and finally got tickets for Kim and Wayne and Brian and I. Brian loved Elvis and his music and has been so happy to have seen him live. Rabbit ears were the norm and with aluminum foil and rabbit ears, you could get any of the three big alphabet channels, (abc...) You could buy a car for $3000 brand new! And your payments would be less than $100 per month. Our first apartment only cost us $99 a month and our first house was $235 a month AND IT HAD CENTRAL AIR!! A McDonald’s lunch was under a dollar too, including fries and drink. Microwaves were unheard of and dinner had to be planned in the morning so the meat would be defrosted by dinner time. You had to defrost the freezer once a month and make your own ice. Tap water was all that was available and a drive-in movie in the summer time was the best fun!
Ah, time flies!

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!