I Love You

“I love you,” Brian said for the first time in August 1969. They are the sweetest words he has ever said to me, other than “I do.” Not a day has passed since that first time that Brian hasn’t said those sweet words to me. Now, with his Alzheimer’s he says them at least ten times a day. I get him his breakfast and he tells me “thank you, I love you.” I help him with his shower and he tells me “thank you, I love you.” I help him with his clothes and he thanks me and tells me he loves me. I help him in the bathroom and he tells me thank you and he loves me. I get him a drink and he thanks me and tells me he loves me. I never tire of hearing those words, “I love you.” It is the last thing we say to each other at night. Almost daily we see signs of Brian’s Alzheimer’s progressing....I dread the day I don’t hear those sweet words any more.

Loved

If what had happened to me last week had happened to Brian, I would have been furious. I would have made sure that the correct things were done as needed. But I found out, when it comes to me, I am not vocal enough...thank heaven’s for Kim and Wayne. Kim got mad for me and did everything she could to help me to get the care I needed. I think everyone needs an advocate. I am Brian’s, and Kim and Wayne are both of our advocates. Kim and Wayne spent a lot of time this summer learning all they could about our healthcare, giving us much needed support and learning how to take over my remodulin and cath treatment should it be necessary. My sister, Linda, sat and learned about my remodulin and cath treatment too. Kim kept me in candy bars and Linda kept me in chocolate milkshakes during my ICU stay. Kevin took care of Brian each day while Kim and Wayne worked, since he works nights. The visits, calls and support I got from family and friends are so appreciated. You love me, You really love me! (Sally Field winning an oscar for Norma Rae). I am sorry nothing bad has happened to you so that you could find out how much you are loved by your family and friends. I guess I am the lucky one, in so many ways!

The Rest of the Story

While we were waiting for the x-ray, I convinced the nurse to call ICU and see if one of my nurses was working. She got Deedee (one of my favorite nurses) who explained to her the seriousness of the situation. After getting the x-ray, the ER Doc finally called my doctor who was not happy since by that time, the drug was out of my system. I didn’t see that ER Doc again. It was decided that I had to stay in the hospital until I could get another cath put in and start the remodulin all over again. Being that I was on coumadin, (blood thinner) I couldn’t have the surgery ‘til Monday or probably Tuesday, since it was a holiday weekend. I was given Vitamin K over the weekend to counter-act the coumadin and a specialist was called to come in on Monday’s holiday, to do the surgery. I was not happy to have to have the cath put back in since it wasn’t fun the first time. A father and son team do this surgery for Kaiser North and the first time I had the father do it. The second time the son put it in. His team was wonderful. I explained the pain I had had the first time and he said that they usually use the lowest amount of anesthesia possible and increase it if necessary. I told him that if I became extremely witty, as opposed to witless, then he needed to increase the dose. So he started with a higher dose and everything went much better (although I still can’t play the piano). After that, it was off to the ICU and I started back on Remodulin that afternoon as if I hadn’t been on it at all. I was feeling better on Thursday and came home. Now I keep a couple of loops on my catheter to allow for more give if the cath is accidentally pulled (yes, you may call me Loopy).
I should have died....if I hadn’t just started on the medication and was on a low dose, I would not be writing right now....I was lucky...and we learned what we need to know should something happen again. I have names and numbers to write letters regarding my treatment. I have a way to get hold of my Dr. in an emergency. There is a note posted on my file that says to call him if I have problems with my cath or Remodulin as well. Sometimes you have to learn things the hard way...Luckily the end result is good.
Thank you for all of you who kept me in your thoughts and prayers. Life would not be so precious but for the love of family and friends. And that is the rest of the story.

More of the Story

In the Kaiser ER, the on-call Doc refused to call my pulmonary specialist. He said he could figure out the problem himself. Only about 2 or 3 people per year are on this protocol with Kaiser Northern Calif. and so very few people understand what to do. And even if they know protocol with a chest cath, my case is different because it is a lifetime therapy, given 24 hours a day, 7 days a week. Interruption will be life threatening. The ER Doc went into his office to look up the drug. When he came back to my room, he again refused to call my Dr. saying that he didn’t know if he was even available. I told him that he would be available for this. Kim took my cell phone outside to call my Dr’s. office but only got the after hours recording. Meanwhile, the ER Doc decided to wait and get a chest x-ray to see if any tubing was left in my chest. X-rays take a while in the ER....The nurse decided to take out my stitches where the cath had entered my chest. I told her not to remove them, that special care had to be taken with the site. The ER Doc agreed with her, tho and so she swabbed it once with alcohol and removed the stitches (she did put a temp dressing on it). This was after I had spent the past 3 weeks being trained to clean my work area with alcohol; I can’t have a fan in the area as it may blow bacteria around; wash with liquid antiseptic cleaner for at least 2 minutes; dry with paper towels, (hand towels can carry bacteria); putting on first one glove and then a special way of putting on the second so as to not disturb the sterility of the gloves; using a mask; using 6 different swabsticks on the area, in a circle from the insertion site out, never returning to the center with the same swabstick; letting each dry, do not blow or fan on it (bacteria); skin protectant; antibacterial dressing; and the final transparent dressing. Even with such strict precautions, infections can occur and those are life threatening.. You become very protective when your life can be literally held in your hands. And this doesn’t include what is involved with mixing the Remodulin, and the sterilizing techniques and priming involved with the drug that actually enters my body. It is a time consuming process. The good news is that if I screw up, the only one I will endanger will be myself. More of the story tomorrow....

Long Night

I have been to Kaiser 42 days out of the last 58 days. I had eye surgery on July 13th resulting in multiple trips to South Sac Kaiser for follow-up. Then I had my chest catheter put in August 12 and have been to Morse Kaiser every day for flushing it with saline and Heperin. Then the past eleven days were spent in the hospital. After I had my cath put in, I wasn’t able to get a room in ICU until July 31 to get started on Remodulin. Other than a bad headache and nausea, it went pretty well. I got out of the hospital on Friday, September 4th in the afternoon. Around midnight, I was back in the ER. My cath had come completely out, without my feeling it. I had been having problems with the loop that gives it extra room in case the cath accidently gets pulled. I think it just worked itself out or having the strap from the holder across my chest pulled on it. I was sitting and when I stood, it hit the floor. Protocol is to call 911 to get an IV started in my arm and get the medicine flowing again, then get to Kaiser ER to fix the problem. Kim called 911 and after taking almost 30 minutes getting here, they refused to start an IV. I gave them paperwork authorizing them to do it and they still refused. I had them call the Accredo nurse who tracks me. The paramedic hung up from Accredo saying that “no nurse was going to tell him what to do.” Finally, Kim and I decided to let them take me to Kaiser rather than waste time arguing. Kim beat me to the hospital by 5 minutes, and I was in an ambulance! I tried to explain to the paramedics on the way that I only had a certain time frame and then my heart would stop. They told me that if my heart stopped, they had procedures to take care of it. They couldn’t prevent it from happening, but if it did they had the paddles. But, no procedure is going to get my heart going again when the remodulin runs dry. The drug is my lifeline. This was the start of a very long night. More of the story tomorrow....

The Top Ten things I learned from being in the hospital

There are worse things than getting an enema...Having your roommate get an enema for one.

Close the toilet lid before reaching over to wash your hands especially if your gown’s hem falls around your knees.

Cleanliness in a hospital is only as good as it’s housekeeping department.

Some people are not meant to be nurses.

Some people are not meant to be doctors.

ICU nurses are worth their weight in Remodulin (which is more expensive per oz than gold).

John F. Kennedy isn’t dead. His pleasure was to provide me with meals that met my specific dietary needs.

Stryker doesn’t just make an autopsy saw, they make beds too. They have you covered from start to finish.

Patients and their caregivers may know more about their disease process and the care necessary to sustain them than some health care professionals.

Time is critical. Sometimes just minutes mean life or death.

Remodulin

Well, my doctor is back and I go into the ICU at Roseville Kaiser on Monday to start the Remodulin. I may be pretty sick the first few days until we get my dosage adjusted. The nurse with Acreedo, the company who supplies Remodulin came over last night. She went over how to prepare the drug for infusion and how to change and clean my line. She was excellent in her explanations. It takes some time and strict adherence to cleanliness and sterility. Kim and Wayne sat with me through the lesson so that they understand what is involved in case I need help. They are so supportive of Brian and I, going to support groups and learning what they can to help us. We could not be going through this without their help. It is scary knowing I am going to go into the hospital only to get sick, when most times you go in to get better. The end result will hopefully enable me to breathe better. Sometimes you have to take the bad with the good and this is one of those times. I am happy to be going on Remodulin instead of Flolan which is twice as much work and has to be kept on ice. You know me, I love the heat and carrying an ice pack 24/7 isn’t my idea of cool. So next time you see me, I will be the one with the oxygen tank on one side and the Remodulin pump on the other. I will have to accessorize accordingly!

Catheter probllems

When I left the hospital on Wed. I was given a number to call on Thursday. My dressing had seeped on Wed. night so at least I knew that had to be changed, but I was not given instructions how to do this, nor was I given supplies to do so. I called the number yesterday, (Thurs.) and the infusion department did not have a record of me or orders for me. I called my Dr.’s office, knowing he was out of town, but left a message for his assistant. I did this several times. After several more calls, I got the assistance of someone in the infusion department. She said she had left a message for my doctor earlier but she would see what she could do for me. I never received another call. Today, I decided I had better just go to the hospital to go to my Dr.’s office and see if I could get helped in person. If they couldn’t help, then I planned on going to the ER and staying there until something was done. I was not given blood thinner meds to stop any clotting in my tube and no instructions on its care. A catheter of this kind has risks of infection, blood clots and sepis.....When I got to my Dr.’s office, his assistant said he had left a message with the on call doctor. Apparently he had gotten my messages but didn’t let me know. It took about two hours, but he managed to get me some help in the infusion clinic. Course, he didn’t tell me that until after waiting for a while, I asked him what was going on. (He needs some lessons in communication!) My Doctor will not be back in the office until Wed. The infusion department flushed out my catheter with saline and heparin, an anticoagulant. Then they changed my dressing and scheduled me to come every day around 3pm to do the same again. They said they would cover me until Wed. when my doctor will be back. Their supervisor said they needed to do so to legally cover the hospital’s butt.... I was surprised they said that in front of me but I think they were shocked that I had been left high and dry after such a procedure. Apparently, my doctor had left orders for me to get the catheter put in. The department who does that had an opening and put me in at that time, hence the short notice. After it was placed, there were no further orders so no one knew what to do. The infusion department mostly works with cancer patients and does not deal with my kind of catheter. I think one of the problems is the nurses do not see this type of catheter too often. In fact, I was told that the 3 nurses who helped me today would be gone this weekend and I needed to explain my type of catheter to whomever is working this weekend. They said they were just covering me until my doctor gets back and I won’t be seeing them when he does. I think the other problem was the assistant did not follow up with me or with the on call doctor. I think he just assumed I was taken care of. And you know what happens when we assume....we make an ass of ourselves. Anyway, I think I will be in the ICU the end of next week getting my medication started. In the meantime, you can catch me at the hospital every day around 3 pm.

Catheter

I received a call yesterday afternoon to get my catheter put into my chest today. It was an experience that I don’t want to repeat as it is painfully uncomfortable. But the team were so nice and tried to make me as comfortable as possible. I have a tunnel catheter that comes out above my left breast. The tube goes inside up my neck and then down into my juggler vein. Tonite it is pretty sore. I have to call my Dr. tomorrow and I imagine I will go into the hospital soon to start the med, remodulin. The food and drug administration approved a inhalation form of the drug this past week but the drug won’t be available for a few months. My dr. didn’t think I could wait for it since when I saw him it was still going through the approval process. Tomorrow we are checking out a program through Sutter that may work for Brian, for in-home care, meds, drs. and everything he would need. I have great hopes that we can get involved in this program. They would be on top of any new meds that may work for him. He is doing ok. He can still laugh and joke with me. I am worried about him when I go into the hospital since he depends on me so much and is scared when I am not around. Four days could be a long time for him. But he can come and spend the day with me in my room and will have family around to care for him. I just like to keep him happy and not worried.

Friday I saw my pulmonary Doctor in the morning and my Rheumy in the afternoon. I am going to go on the IV medication, Remodulin. It is one of the medications delivered by a continuous infusion, meaning the drug is delivered steadily to the patient through a small pump outside of the body into a permanent catheter intravenously in my chest. I am still going to be taking the Letaris and the Rovatio (a pill containing the active ingredient in Viagra), in addition to this new drug. Romodulin costs about $100,000 per year, in addition to my other drugs including the Letaris which costs $60,000. At some point you have to say how much is a person worth and these orphan drugs are way too expensive! I would like to think I am worth $200,000 a year, but the government doesn’t think so since they don’t pay me that much in social security....The bionic man was worth 6 million and that was in 1974. I guess I am small potatoes compared to him...but then I am not saving the world....
In order to improve the flow of Remodulin, I will also begin taking Coumadin, a blood thinner. REMODULIN is a type of medication called a prostacyclin analog. It acts similarly to the prostacyclin that is found naturally in the human body, which helps keep the blood vessels open and working properly. Prostacyclin medications work by opening the blood vessels and may reduce the buildup of cells around the blood vessel walls. Blood returning to the lungs is pumped through the lungs by the right ventricle of the heart. Blood pressure in the lungs is ordinarily rather low, for example 20/10, in contrast to body blood pressure which is usually around 110/70.Resistance to blood flow through the lungs puts a strain on the right ventricle. At early stages, the right ventricle is able to compensate but as the resistance increases and the pressures go higher, the right ventricle cannot keep up. At early stages, shortness of breath occurs with moderate physical activity but as it worsens, it takes less and less physical activity to cause shortness of breath.
The pressure in the lungs can be elevated for several different reasons in scleroderma. The left ventricle can become stiff or weakened, leading to back pressure into the lungs. This is called heart failure. The distinctive problem in scleroderma is narrowing of the small lung arteries from progressive scarring of the inner lining of the small artery which is what is happening to me.
I won’t start on the drug until probably September. I have to have the catheter put in and there is a lot of paperwork for that and to get the Remodulin...when I am finally put on the drug, I have to be in the hospital for 4 or 5 days to make sure I can take it ok and I am trained in the care and use of it. This is the one drug that is stable at room temp so I won't have to carry an ice pack with me in addition to my oxygen and the drug pack.
So, I know what my plans are for the rest of the summer...What are yours?

Will You Still Love Me?

“Will you still love me if I forget your name or who you are?”
“I would be sad, but I would still love you.”
“Will you still love me if I wander from home and forget where I am?”
“I would be worried, but I would still love you.”
“Will you still love me if I forget day or month it is?”
“I would tell you it is a beautiful day and I would still love you.”
“Will you still love me if I cannot dress myself or brush my teeth?”
“I will help you to dress and to brush your teeth and I would still love you.”
“Will you still love me when I am angry or depressed because I don’t understand what is happening to me?”
“I will understand, and I will still love you”
“Will you still love me when I cannot take care of my family? “
“I will take care of our family for you and I will still love you.”
“Will you still love me when I cannot taste your wonderful cooking?”
“I will continue to cook special foods for you and I will still love you.”
“Will you still love me when I cannot remember our wonderful life together?”
“I will tell you about our wonderful life together and I will still love you.”
“Will you still love me when I cannot walk?”
“I will carry you and I will still love you.”
“Will you still love me when I cannot sit?”
“I will hold you and I will still love you.”
“Will you still love me when I cannot smile at you?”
“I will smile for you and I will still love you.”
“Will you still love me if I don’t know the words to say I love you,?”
“I would be very, very sad, but I would love you more!

Dog days of summer

I love the summer and the heat. With Raynauds, I have an aversion to cold, cool, and lukewarm. And I love the sun. I hate rainy days as they make me depressed. The sun just makes me happy. Brian is happy to sit outside with me until it gets too hot. Kim and Wayne have such a nice backyard and deck that it is always calling to me. My vegees are doing great, tho I have only had one red tomato so far. I have a ton of green tomatoes and they will probably all turn red at once. Summer and home grown tomatoes....nothing better....and watching Kim and Jenny decorate a Christmas tree in the middle of July. Jenny’s Harry Potter party is next weekend. We see the movie and then party. The theme is Christmas time in pinks, lime green and aqua. Love the dog days of summer!

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!

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.