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.