Living with Hope

I Love You

2009-11-11T01:04:00.000-08:00

“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

2009-09-15T21:30:00.000-07:00

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

2009-09-14T20:41:00.000-07:00

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

2009-09-13T19:36:00.000-07:00

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

2009-09-12T20:50:00.000-07:00

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

2009-09-11T16:53:00.000-07:00

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

2009-08-20T23:08:00.000-07:00

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

2009-08-15T00:33:00.000-07:00

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

2009-08-12T21:13:00.000-07:00

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.

2009-08-02T17:28:00.000-07:00

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?

2009-07-26T00:06:00.000-07:00

“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

2009-07-12T15:00:00.000-07:00

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

2009-07-08T21:02:00.000-07:00

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

2009-06-15T17:00:00.000-07:00

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

2009-06-04T00:57:00.000-07:00

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

2009-05-29T02:26:00.000-07:00

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

2009-05-27T02:39:00.000-07:00

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

2009-05-24T23:20:00.001-07:00

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!

2009-04-11T22:14:00.000-07:00

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

2009-03-23T23:38:00.000-07:00

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

2009-03-12T01:28:00.000-07:00

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.

Sides

2009-02-28T23:52:00.000-08:00

Brian has always been wonderful to me. I didn’t know he had a temper when we were first married. He never showed it to me. He gets his temper from the Murphy side of the family. Must be the Irish in him. I first found out about his temper when he came home from work one day and ranted and raved about his day. He told me he wasn’t mad at me but at his job. This happened a few times and I finally told him that if he was mad at his job, get mad there, not at home. Again, he assured me he wasn’t mad at me. He rarely brought his temper home from work after that. Brian has rarely gotten mad at me during our marriage. Not that I didn’t deserve it but because when it comes to me, he is the sweetest person on earth. Alzheimer’s has a tendency to change people’s personalities early in the disease process. This hasn’t happened with Brian. If anything, he is even more sweeter! I have been having muscle problems and several times a day he comes over and gives me a neck and shoulder massage. Not a day goes by that he doesn’t tell me how great I am. Someone will come onto the TV and I will mention that she is pretty and Brian will agree, then say, “But not as pretty as you!” And then we laugh, and he says, “I still have it!”, meaning his ability to sweet talk me. Brian has lost his temper. I haven’t seen it for years now. Without the stress of working his temper has disappeared. Brian is usually in a good mood and even hums a lot. We laughingly recall an old friend, Drydee, who hummed all the time. Brian is the new Drydee. This is a side of Alzheimer’s that we do not mind.

New Hope

2009-02-20T22:33:00.000-08:00

Hope

A study found that in a mouse model of Alzheimer’s, stimulating the innate immune system reduced the amyloid plaque in their brains and improved cognition. Alzheimer’s disease is characterized by the deposit of amyloid protein in the brain. Researchers think that clearing those deposits might prevent the cognitive effects of the disease. There appeared to be no toxic side effects. The animals were treated with DNA constructs called CpG oligodeoxynucleotides, a relatively new pharmacotherapeutic class currently being evaluated in cancer, viral infection, and asthma/allergy.
The constructs used in this study have already been shown to be safe in humans, suggesting that clinical trials in humans could occur relatively quickly. In cognitive tests at 17 months, the treated animals did significantly better than untreated mice at navigating a maze and were not significantly different from wild-type animals.
When the researchers examined the brains of the animals, they found the level of amyloid in the cortex of treated animals was 66% lower than in untreated mice.

For the first time, an experimental drug shows promise for halting the progression of Alzheimer’s disease by taking a new approach: breaking up the protein tangles that clog victims’ brains.
The encouraging results from the drug called Rember. The tangles are made of a protein called tau and develop inside nerve cells. Studies suggest that Rember can dissolve them.
For decades, scientists have focused on a different protein — beta-amyloid, which forms sticky clumps outside of the cells — but have yet to get a workable treatment.
The drug, Rember, is in the second of three stages of development, and scientists are paying special attention to potential treatments because of the enormity of the illness, which afflicts more than 26 million people worldwide and is mushrooming as the population ages.
In the study, 321 patients were given one of three doses of Rember or dummy capsules three times a day. The capsules containing the highest dose had a flaw in formulation that kept them from working, and the lowest dose was too weak to keep the disease from worsening.
However, the middle dose helped, as measured by a widely used score of mental performance.
“The people on placebo lost an average of 7 percent of their brain function over six months whereas those on treatment didn’t decline at all,” he said.
After about a year, the placebo group had continued to decline but those on the mid-level dose of Rember had not. At 19 months, the treated group still had not declined as Alzheimer’s patients have been known to do.
Two types of brain scans were available on about a third of participants, and they show the drug was active in brain areas most affected by tau tangles.
“The company is raising money now for another test of the drug to start this year.
The main chemical in Rember is available now in a different formulation in a prescription drug sometimes used since the 1930s for chronic bladder infections — methylene blue. However, it predates the federal Food and Drug Administration and was never fully studied for safety and effectiveness, and not in the form used in the Alzheimer’s study. Even if bigger, more rigorous studies show it works, Rember is still several years away from being available, and experts warned against overexuberance.

I have heart!

2009-02-13T20:17:00.000-08:00

I saw my heart doctor last week as I have been having more trouble breathing and am retaining water. Retaining water means my heart isn’t pumping as well as we’d like. He had me get a chest xray and to go back on lasix ( a diuretic), for the water retention. Dr. Devendra said I was a class three/class four in symptom severity of pulmonary arterial hypertension. The classifications are:

Class I: Patients with pulmonary hypertension but without resulting limitation of physical activity. Ordinary physical activity does not cause undue dyspnea or fatigue, chest pain, or near syncope.
Class II: Patients with pulmonary hypertension resulting in slight limitation of physical activity. They are comfortable at rest. Ordinary physical activity causes undue dyspnea or fatigue, chest pain, or near syncope.
Class III: Patients with pulmonary hypertension resulting in marked limitation of physical activity. They are comfortable at rest. Less-than-ordinary physical activity causes undue dyspnea or fatigue, chest pain, or near syncope.
Class IV: Patients with pulmonary hypertension with inability to carry out any physical activity without symptoms. These patients manifest signs of right heart failure. Dyspnea and/or fatigue may even be present at rest. Discomfort is increased by any physical activity.

I agree. Just talking on the phone puts me out of breath, let alone walking to the phone. There aren’t many statistics regarding PAH and scleroderma. Unfortunately, what little that is known, shows that patients who have PAH with scleroderma have a much higher rate of death than those with PAH without connective tissue disease which has a mortality rate of about 2.5 years after diagnosis without treatment. I have a CAT scan scheduled for next month. If nothing new shows up on the xray, then my dose of Letaris will be changed from 5mg to 10mg next month. I have to see him again the end of March.
When on Letaris, the defining test to see if the drug is working is a six minute walk test. Because avascular necrosis has limited my walking ability, I can not do the walk test. Now, I am actually happy not to do the test since it seems like a 24 hour test rather than only 6 minutes. I will continue to have echocardiagrams to see if the hypertension goes up. It is not as definitive as a heart cath but is less evasive.
Heart failure often causes edema. A weak heart can't pump hard enough to keep up with this cycle. It receives more blood from your lungs than it can pump out into your body. The blood it can't handle backs up and seeps out of your blood vessels into other tissue, including your lungs. Cells get waterlogged. This causes swelling called edema. Edema usually - but not always - shows up first in your legs and ankles.
Why does it usually show up in your legs and ankles? Because good old gravity is pulling all that "loose" fluid straight down. Presto: your feet and ankles look like the Goodyear blimp.

PAH is a complication of systemic sclerosis and adversely affects survival.
The main disturbance resides in constriction of pulmonary arteries and thickening of the pulmonary arterial wall. As a consequence, the right ventricle that pumps blood into the lungs works against an abnormally high resistance. Initially, the right ventricle is able to compensate for the increased workload, but in time, it decompensates, and patients develop right heart failure.
Typically, patients with PAH have no complaints at rest. The main symptom is shortness of breath with activity. Shortness of breath develops initially with exercise, such as climbing up a few flights of stairs.
Later, patients feel limited during activities of daily living, such as bathing or dressing, and ultimately, they feel short of breath even getting out of bed. In advanced cases, chest pain, lightheadedness, or loss of consciousness may occur with exertion and leg swelling may become prominent especially at the end of the day. Lasix makes me pee A LOT and then drink a lot because of dry mouth (sjorgrens) and pee A LOT more.
Happy Note: With part of our rent paid, our landlord is not kicking us out! Even though it is raining, things aren’t as bleak as they may seem.

Teachers

2009-02-06T21:00:00.000-08:00

2009 has already started to be a very tough year. Everyone I talk to has been affected by the recession, either in job layoffs, cuts in benefits or salary, stock losses or other cuts. No one that I know has been exempt. Teachers and employees in the San Juan school district will all get pink slips this spring. A pink slip is a warning you may be out of a job in the fall. Though California public education may receive $15 billion over the next two years if the federal stimulus package passes, estimators put California’s educational shortfall at $9.7 billion over the next 18 months. With the recession and California’s financial crisis, districts don’t know what numbers they’ll be working with for next fall. In better financial years, most districts are able to bring back most of their pink-slipped workers before the fall session. This year, 2009 will be much different for most school districts across the nation. The unfortunate thing about this, I think, is that older teachers who have lost enthusiasm for teaching and may be mediocre teachers get to keep their jobs, while newer, fresher teachers who have enthusiasm and new ideas lose their jobs. It comes down to how many years you have done your job, not how well you do it. It is a shame we cannot kill two birds with one stone by keeping only the best teachers and improving the quality of education, and getting rid of the worst teachers while improving the bottom line.

New Year, New Problems

2009-02-05T02:37:00.000-08:00

The new year has started and so has my 2009 drug plan. Caring voices has given me a grant again for Letaris but all the paperwork, etc. still has to be completed. Meanwhile, since I am on Letaris, I cannot stop it until all the t’s are crossed and i’s are dotted. (I didn’t start the drug last year until all of this was done.) So I had to pay a portion of my co-payment now and will be reimbursed. I do not mind this, but it makes me short on our rent again, something our landlord has told us cannot happen again. We had problems with social security and getting our checks during a period last year and were late on our rent then. Even with letters from social security stating they were fixing the problem, our landlord was not understanding. He hasn’t been understanding about my need for a wheelchair and a wheelchair ramp to get onto the sidewalk to get to my apartment, even though our building is the only building without one. He has a $2000. deposit of ours that I hoped would help him understand our predicament now. But I think he would like to get rid of us because of the ADA concerns we may have in the future. It is such a shame because we love our place and Brian is very comfortable here. To move would be hard for him since familiarity is important to people with Alzheimer’s. We are neither one in good health to make a move and the packing that comes with it. It is so frustrating! We finally have our social security checks coming to us in a timely manner, and our finances stable. I don’t know how others with medical bills do it. We do have good health coverage with Kaiser and now can manage the day to day costs. By this time next year, when I will have to come up with part of the co-payment for letaris again for the new year, we should have a cushion saved up to cover it. But right now, we don’t. Any ideas or suggestions on how to cope with this would be appreciated.

In Memory

2009-01-25T23:07:00.000-08:00

On Saturday Brian and I went to a memorial for one of our friend’s mother. It was very nice, with many people sharing wonderful memories of her. As with all funerals and memorials I have attended, I think the people who have passed would have loved to hear the wonderful words spoken about them. People should know how much they are loved and how well thought of they are, before they die. Why do we wait until somebody has passed away before we tell them how much they mean to us? Why do we wait until it is too late to recall the good qualities of a person? We share memories and laugh and cry. It does help us cope with the grief of losing a loved one but I think the person who needed to hear it the most can’t hear it at all. I would rather have a celebration of life than a celebration of death. When I realize my time is up, I am going to have a Going Away Party (also known as Going To Hell in a Handbasket Party). I want to hear what people think of me. I want to know if I made a difference in someone’s life. I want to laugh and burble (Jenny’s word for me when I cry at anything that strikes an emotional chord in me) with all of my friends as they tell stories about me. I want to celebrate my life; how thankful I am to have been here; for Brian and Wendy and Kevin and the rest of my wonderful family; for the joy in my life and for the sorrow, that has made me appreciate the joy even more. And when I die, we will know that nothing was left unsaid and we have no regrets between us. And hopefully I will be remembered for enjoying life instead of remembered for dying.

Flat Tire (not the beer!)

2009-01-22T20:59:00.000-08:00

The other day, I was taking an older friend of mine to her hairdresser, the bank and the store. I do this once a week since she cannot drive any more. Brian was with me and we were enjoying the warm sunny day. On the way from her house to her hairdressers, my car started making a funny noise. After I dropped her off, I pulled out to find a place that could check my car and find out what the noise was. I was afraid it was a transmission problem and would be very costly. I had to pull back in to the hairdresser’s parking lot as the noise was so bad, it was scary. My front tire had split from the metal part of the wheel (my technical terms) and I needed to change my flat tire. I have never done this before but I was grateful that it wasn’t anything worse like the tranny. Brian didn’t remember how to do it so I went inside for help. There were women and one happy (gay) man working on hair. The happy man came out to see what he could do, which was the same as me....nothing. He had never changed a tire and didn’t even know how to work the jack. So I used the phone book to call a tow truck to come change my flat. The charge was $60 which I didn’t have. So I went back outside and told Brian we would try to do it ourselves. Luckily there were directions with the spare, and an hour later, we had the tire changed. I put the tire iron on the lug nuts and Brian was able to loosen them for me and tighten them when we put the new tire on the car. The hardest part was getting up off the ground from my seated position. We were so pleased that we were able to conquer the flat tire by working together. We always say that I am the brains and Brian is the brawn. Together we almost make a whole person!

Caring Voices

2009-01-21T22:22:00.000-08:00

It is the new year and I have been approved for a grant again from the Caring Voice Coalition to help cover my costs for Letaris, a drug that costs $60,000 per year. The Caring Voice Coalition is a non-profit, charitable organization, established in 2003. It serves the needs of individuals affected by serious, chronic disorders by providing financial assistance, insurance education and counseling and patient support. They assist patients improve their quality of life. They currently serve patients diagnosed with Alpaha-1 antitrypsin deficiency, chronic granulomatous disorder, huntington’s disease, idiopathic pulmonary fibrosis and pulmonary arterial hypertension.
I am so grateful that Caring Voice has helped me and others. They are so caring and kind when I talk with them. Until recently, the diagnosis of pulmonary arterial hypertension in a patient with scleroderma was the most sure death sentence in all of rheumatology. New drugs on the market such as Letaris have extended the lives of those patients, but the costs are high. I would not be able to take Letaris because I wouldn’t be able to afford my co-payment for it if it weren’t for Caring Voices. The Caring Voice Coalition accepts financial contributions from both the public and private sector to assist patients with severe, chronic conditions. Anyone may support the Caring Voice Coalition, including state or federal foundations, individuals, and private or public corporations.
My medical records show that I have systemic sclerosis (scleroderma), gerd, fibromyalgia, or myosistis, hyperlipidemia, hypothyroidism, sjogren’s, raynaud’s, cervical spine disc disease, pulmonary fibrosis, pulmonary arterial hypertension, avascular necrosis, and glaucoma. I take several medications to control my symptoms and I incur the cost of the meds as well as visits to the Doctors each month and for labs and tests. With my medical history, I am so grateful that Caring Voices sees me fit to help with a grant for Letaris. With our economy as bad as it is, we have to put our dollars to good use. If you are able to donate to a charity this year, Caring Voices would be a wonderful group to consider. It is groups like Caring Voices who give us hope for a better tomorrow.

Be Careful Where You Live!

2009-01-20T01:09:00.000-08:00

I met a lady about my age the other day who had Scleroderma and Pulmonary Hypertension. She was put on an IV directly into her chest and is infused with Tracleer 24 hours a day. She has been like this for two years. She lives in Rancho Cordova. That adds to my theory that something in the water or air in that general area, by Mather AFB and by Aerojet may be what triggered the two main diseases that Brian and I have. The trigger manifested in us differently reacting in different disease processes. We lived in Sacramento bordering Rancho Cordova, and used Mather’s water supply. Between 1958 and 1966, waste solvents and transformer oils were disposed in a waste disposal pipe at Mather AFB. In 1993, the State looked for the pipe but could not find it. But they found trichloroethylene (TCE) in the shallow water bearing zone in the area. Three underground storage tanks and associated contamination were removed in 1993. In 1987, two tanks, one containing diesel fuel and one containing gasoline were removed because of leakage into the area. From 1982 until 1993 when the base closed, a total of 89 areas with significant contamination were found on base property. In addition, 5 groundwater plumes were identified as contaminated.
Approximately 10,000 people live within a 1-mile radius of the site, and approximately 60,000 people within a 3-mile radius of the site depend on groundwater for their main drinking water supplies. We lived within the three mile radius. I am not saying that everyone in the area is sick or will get sick. But people like Brian and I have a susceptibility to something that triggered our disease process. Records from 1987 state: “Soil and groundwater contain various volatile organic compounds (VOCs), gasoline, diesel fuel, metals, pesticides, and other contaminants. There is the potential for human exposure to these hazardous chemicals by accidentally ingesting, inhaling, or coming into direct contact with contaminated soil or groundwater.” We lived in the area from 1980 until 1998. In 2006 a review of the hazard removal at Mather states, “Factors that can influence the health effects when human beings are exposed to hazardous materials include: the dose the person is exposed to, the frequency of exposure, the duration of exposure, the exposure pathway (route by which a chemical enters a person’s body), and the individual’s unique biological susceptibility.” Environmental investigations into Aerojet which backs up to the Mather site began in 1979. Those findings mirror Mather’s hazardous waste problems. Since 1953, Aerojet and its subsidiaries have manufactured liquid and solid propellant rocket engines for military and commercial applications and have formulated a number of chemicals, including: rocket propellant agents, agricultural, pharmaceutical, and other industrial chemicals. In addition, the Cordova Chemical Company
operated chemical manufacturing facilities on the Aerojet complex from 1974 to 1979. Both companies disposed of unknown quantities of hazardous waste chemicals, including TCE and other chemicals associated with rocket propellants, as well as various chemical processing wastes. Some wastes were disposed of in surface impoundments, landfills, deep injection wells,
leachate fields, and some were disposed of by open burning. Underlying the site are extensive 40 to 100 foot-deep dredge tailings, a remnant of past gold mining operations. Reading through the paperwork on the impact to humans and the environment in both areas, there is a rather long list of hazardous materials. Of the ones I have mentioned, trichloroethylene is known to cause brain damage, kidney and liver damage and respirtory problems among other things, including cancer and Parkinson’s disease. (My father had Parkinson’s and we lived in Orangevale, close to the Aerojet site. Perchlorate can health problems, among them, low levels of thyroid, which I have and I take Synthoid to replace my thyroid hormone. In 1990-1996 the hypothyroidism rate in Rancho Cordova was 1 case / 1300 births, where the national average was 1/4000. At this point I don’t believe I can prove my theory. We do not know the cause of Scleroderma so contamination can not be pinpointed as the cause of my disease. Many researchers feel that several factors work together to induce scleroderma, such as a genetic inclination along with exposure to a toxin or infection which triggers the illness. We don’t know the cause of Alzheimer’s either, though it is clear that it develops because of a complex series of events that take place in the brain over a long period of time. It is likely that the causes include genetic, environmental, and lifestyle factors. These are only two of the hazardous waste products found on the sites. I am sure if I were to look futher I would find many more coralations between the hazardous waste areas and our diseases.

The Best Man Won!

2009-01-14T18:56:00.000-08:00

I am so looking forward to a new President and a change in administration. I voted for Obama because I think he is the one to change the future of our country, not because of his race. Brian and I have liked him since we saw him on Oprah two years ago and have followed him since. It disturbs me that so many Black people seem to think the win for Obama was about race when for me it had nothing to do with race. Being white and living on the Pacific coast has enabled me to live a life free of most of the racism found in the south. There is no way I can understand the mind of a Black person who has lived with racism and sees Obama’s win as a win for the Black population. I just hope that some of those people know that we voted for the person who we felt was right for the job and don’t see racism as an issue. How can we go forward and abolish racism when so many of those who cry racial discrimination are overjoyed to point out the racial differences of our new President?

January Blues

2009-01-11T19:56:00.000-08:00

The holidays are over and my Christmas things are almost all put away. Wendy and the Kids have been here since Thursday night. The kids stayed with us Friday and Wendy ended up leaving work early, sick. I took my friend Shirley to get her hair done, go to the bank and the store late Friday afternoon. I usually take her once a week since she can not drive anymore. I ended up not feeling well on Sat. and missed going to my niece Jenny’s for craft day and also seeing my niece Lisa Sat. night at my sister’s. Wendy and the kids left tonight, Sunday. I was supposed to go get Kevin to stay two nights but we decided to wait until tomorrow. He is watching the King’s game and I kind of like the peace and quiet right now. I love the fact that the kids come and stay with us once or twice a week. They really help us and we enjoy their company. Kim is picking up our laundry tomorrow. She doesn’t know what she is in for. We have only been doing what we need to do so there is a big pile that needs to be done. She is so great to do our laundry for us. We have laundry facilities here but it cost six quarters to wash and six to dry. So I have to stock up on quarters. Then I have to go back and forth 6 times to wash and dry one load. It may not seem like much, but as you know, breathing and walking are not compatible for me and I have to stop to rest a couple of those times. Wendy and Kevin do a lot of washing for us but I have to make sure I have the quarters on hand. So I am appreciative that Kim doesn’t mind doing laundry for us. And lots of times, we get a free meal out of it too if we take the laundry over to her house. I have to find things to be happy about in January. January is a horrible month for me. I hate the cold weather, the holidays are over and I get depressed. I can’t wait til spring!

Merry Christmas!

2008-12-28T23:26:00.000-08:00

Merry Christmas!
We hope you all had a very merry Christmas! We had such a nice time! Kim made Christmas Eve dinner for a bunch of us and it was so delicious. We relaxed and visited with each other. We spent Christmas night at Kim and Wayne’s home. We all used to spend the night at Nana and Papa’s until they passed away in 1994. I picked up Kevin after work about midnight and he spent the night too. Wendy and the kids had been over for dinner but were spending the night at home. Joshua took home cookies and carrots for Santa and his reindeer. I told him that the reindeer also love broccoli but that Santa frowned on feeding it to them. It makes them fart and Santa has to sit behind them....Joshua thought that was pretty funny. Cliff and Jenny spent the night too and we all had fun opening presents in the morning. Kim provides all kinds of breakfast drinks and fixings and is just a warm, fuzzy morning. We take our time opening presents one by one. I really enjoyed Cliff and Kevin. Kevin loves Cliff and they get along so well. Cliff just fits into the family like he was meant to be with us. In the afternoon we went to Linda and Bill’s house to share Christmas with my side of the family and have Christmas day dinner. Linda cooked another huge meal and it was delicious. Sue and her family were there, Thomas was back from Russia, Robert was there with Caleb and Wendy and the kids were there. Larry and Heidi and Karen were there too. I painted and framed a 16x20 deer picture for Larry and he loved it. I liked it so much I wanted to keep it for myself. Brian did great with all the festivities but tired easily. With both of our disease processes we sleep about 12 hours and now Brian is finding he needs a nap as well. Our home is a mess with presents and boxes here and there. I don’t like to put them away right away because I like to look at them and enjoy the memories. Wendy was over today and said she was already taking down her decorations. I like to wait until after New Year’s. Christmas isn’t just a day, it is a season and I am not ready to end it yet!

Grateful

2008-12-17T21:47:00.000-08:00

There are so many things to be grateful for this time of year, all year in fact. I am grateful for the warmth of our cottage apartment, especially when it is so freezing outside. Being cold is so painful for me. I lose the circulation in my hands and feet and they turn blue and white. This is from Raynaud’s. It takes a while to get them warm and it is painful when the circulation returns. I know our home is hot to everyone else but it feels so good to me. Luckily, I just got on a discount rate from Smud for having to use oxygen and for scleroderma. Even then, I don’t think my bill will be cheap. But it’s only for a few months and then the sun will shine again.
Kevin spent Monday night with us and I made him and Brian brownies with homemade chocolate icing. They acted like it was the greatest thing since sliced bread. I am so grateful for the time we share with Kevin and Wendy and the kids. Sat. night was our Disney Christmas party and Wendy and the kids were there. Sunday, I treated Kim and I to the Singing Christmas Tree for her birthday and Kevin, Wendy and the kids went too. It is easy to just run through life, hurrying from one thing to another. Brian and I know that we can not take a single day for granted. Each moment is so precious to us and we try to enjoy each and every minute. I made Brian meatloaf for dinner, his favorite meal. He enjoyed it so much. Just a small thing as this is so fulfilling. I am so grateful that I can do little things like this to make him happy. Doing for others, from our hearts, has to be one of the greatest gifts we have as humans. That and the capacity to love. Together, I feel so good!

Christmas Movies

2008-12-15T21:31:00.000-08:00

Brian and I watch every Christmas movie we can and many of them several times. Family channel and Hallmark have one or two movies every day. And they all make us cry at the end. If we were like the Grinch and our hearts got 2 sizes bigger every time we felt the Christmas spirit...why our hearts would be...well they would be HUGE! Brian even admits he likes Christmas more than Halloween now. And he is more emphatic about watching Christmas shows than I am. And always at the end, he says, “This is killing me!” The other night we were watching Home Alone which is one of my favorite Christmas movies. (My most favorite is How the Grinch Stole Christmas with Jim Carey. When he mimics Ron Howard’s directing I know I am in on a personal joke!) Anyway, at the end of Home Alone, Brian and I were both crying. Christmas movies are all feel good movies that make you happy to be alive. We have so many warm, fuzzy memories of Christmas’s past. We are so lucky to have such a warm loving family to share our Christmas’s with. Each movie we watch evokes those memories and makes us cry.

Christmas

2008-12-10T18:46:00.000-08:00

Brian has always helped me shop for Christmas presents. When Wendy and Kevin were little, we would go to Toys R Us the day after Thanksgiving and shop for them. Brian and I would each have a cart, one for each of the kids and we could fill them up for about $100. each. I admit, that was 25 plus years ago. Brian always went shopping by himself for me. He always got me beautiful clothes and accessories. He has wonderful taste. He would bring his shopping home and delighted in showing his gifts to Kim and close friends. He wrapped his gifts himself and I had so much fun opening them on Christmas morning. Of course those days are over. I no longer work and need nice buisness clothes. Sweats are the norm now. The past few years, Kim has taken Brian to do his shopping and then she wraps his gifts for him. Brian has been fretting for the past two months over what he wants to get me for Christmas. He worries he doesn’t know what to do. I always assure him that Kim will help him and he is satisfied for that moment. We get paid the week of Christmas so Brian has to wait until then to do his shopping. Kim is off work that week so that works out fine. With all the other problems Brian could fret about, that he frets about Christmas Shopping for me makes me cry. It has never been what he has gotten me, but that he takes so much pleasure and makes such a wonderful effort to make sure Christmas is fun for me. That is one of the reasons I have always loved Brian so much.

Daily Living

2008-12-01T21:53:00.000-08:00

Thanks to Catherine, Brian has been back on aricept for the past few weeks. However, he continues to show changes from Alzheimer’s. Where as before, the changes were on a weekly basis, I am seeing changes on a daily basis. Each day is a learning process. It is frustrating for Brian when he spills or makes a mess and he is so apologetic, saying over and over again how sorry he is. I tell him he doesn’t need to be sorry, it is his disease process and it is not his fault. But he does feel badly to not be in control of himself. I feel his sorrow for this loss of self and I try to make light of the situation for him. Alzheimer’s is such a mean disease. Brian is conscious that his life and memory are slipping by and he can’t do anything about it. He is not angry about it and only rarely shows frustration. It is scary for him. We continue to joke and laugh about it and that makes him feel better. The other day he said that that president had this. He meant Ronald Reagan. I told him that Ronald did go through the same things as he was experiencing and if Ron and Nancy could do it, so could we. We both thought that was funny and now when faced with a situation, I refer to ourselves as Ron and Nancy. While laughing helps a lot, it doesn’t always work. Yesterday, as I was cleaning up a mess, Brian said he didn’t know how I could handle things every day and he was sorry I had to do this. I told him that I do it because I love him and I know that he would do the same for me if our positions were reversed.

Oh, Christmas Tree

2008-11-25T06:40:00.000-08:00

Kevin spent the night again last night and put up our Christmas tree. Our tree is older and is not quickly put together. First you have to figure out how the stand goes together. Directions came with the tree and are around somewhere, but I have always been a firm believer in doing first and reading directions later, if at all. Each layer of branches has a coordinating colored end such as blue, red, etc...But most of the paint has worn off so at best it is a guess which branch goes to which level. Each branch has smaller branches that have to be formed into a realistic looking pine bough. It usually takes me several hours to sort each pile of branches and then go through each pile and form each bough. Kevin, I found, has a different way of putting the tree together. He just kind of eyeballed each branch and put it in a pile of others approximately the same size, put all the branches on the tree trunk and then kind of spread them out. It was much, much faster than the way I have always put the tree up. There was a time when I might have told Kevin the right way to do the tree and insist he do it my way. It was very difficult to learn to accept help when it is offered and to lose control over the way things are done. I was grateful that Kevin did the hard work and I get to do the fun part, decorating the tree. I realize that there are other ways to do things rather than just my way and if the end result isn’t perfect, well, I have never seen a perfect tree.

Christmas trees

2008-11-22T17:41:00.000-08:00

Kevin spent the night Monday night. He pulled out most of our Christmas stuff so we could start decorating. When we owned our two-story house, I decorated big time for Christmas after cleaning up the Halloween stuff. Kevin and I put tons of lights on the outside and the roof of the house. Thanksgiving night we turned it all on and it was (we thought) beautiful and festive! I did different things to the inside of the house. One year, I put a big tree in the living room, a tree upstairs in Kevin’s room and a tree on the roof. Looking through the windows from the outside, it looked like one tree went through the whole house. We always had lots of decorations and Kevin and Wendy would help decorate. Kevin was more into decorating though and wanted things in the same place as they had been the previous year. (He still does not like change). We had a Christmas tree in every major room. Kevin and Wendy had smaller Christmas trees in each of their rooms and the lights acted as night lights for them. They decorated their trees with their own ornaments. Kevin always went for lots of tinsel and bling. That is not his style now. Wendy’s style of decorating was more romantic, a style that she continues to this day. So now we have bins and boxes all over and Kevin will be back on Monday to help set up the tree..

Biscuits

2008-11-17T21:40:00.000-08:00

Wendy and the Kids were over yesterday. While the Kids and I did crafts, Wendy did some cleaning for me and washed a load of clothes. I made a stoup (cross between soup and stew) and biscuits. Joshua and Melissa say Grandma makes the best biscuits, so I usually make them when they come over. My Grandmother made biscuits every night for dinner. She never measured her ingredients. She had a drawer in her kitchen that was lined with metal and held her flour. She would make a well in the flour and put all her ingredients into it. Then she mixed it up adding her milk until the consistency felt right. She would pull off a chunk of dough, roll it between her fingers into a flattened ball and put it in her metal biscuit pan. The biscuits would cook up light and fluffy. They were the best biscuits I have ever had. When I was a teenager and doing a lot of cooking, I asked Grandma for her recipe. She didn’t have a written recipe and just used a pinch of this and a pinch of that. I sat there while she made her biscuits and when she took of pinch of this and that, I measured it before she put it into the mixture. Grandma is gone but I still have her recipe and think of her every time I make biscuits. Bisquick makes a good biscuit that with a little tweaking, tastes every bit as good as Grandma’s, but I still like to make mine from scratch just like she did. Now, when I make biscuits, Joshua and Melissa bring their barstools over to the counter and make them with me. After washing their hands, we measure and mix and pat and cut. They roll the biscuit dough in butter and place it in my biscuit pan. The biscuits come out light and fluffy and practically melt in our mouths. It makes me so happy to know that Grandma’s biscuit tradition continues with the next generation.

Life

2008-11-11T01:07:00.000-08:00

Ever since I was a little girl, I have said my prayers at night. I always thank God for Brian and I having such a good marriage, for my wonderful kids and family. The other night, after I said my prayers, I lay there thinking. I can understand my having Scleroderma and everything that goes with it. I would rather have it than have someone else in my family be sick. But I was wondering why Brian has Alzheimer’s. He is such a wonderful, loving man; why should he have to go through this? I have often wondered this, but until that night I had no answers. Then in a moment of clarity, it came to me. Brian depends on me for so many things. He always has. My love and support have gotten him through some difficult times. We have always faced everything together. We both know that we will not be here 10 years, probably 5 years from now. We have accepted that. But If I go before Brian, he will be devastated. He has family and friends to help him but you have to know Brian to know that he will not want to survive without me. I figure that God has given him Alzheimer’s so that if I go before him, he will probably be living in the past at that time and not in the present. His memories will sustain him until it is his time. I have to believe that there are reasons for everything. I think in Brian’s case, God is being merciful.
I don’t usually talk about my beliefs. When you are facing death, you have to plan ahead so that you can get the best of whatever is possible out of the time remaining. I believe there is a God. A few hours before my mother died, she said she saw "The good Guy", meaning God. She was not a religious person and to say something like this was out of character for her. I cannot look at the sky or at nature without knowing the miracle of life. My Catholic upbringing has given me my beliefs. My beliefs give me the courage and strength to live the best possible life out of my remaining time. All of us are going to die. Some of us are lucky enough to know when and are better able to prepare for it. I read somewhere that without death, life would not be so precious. That is so true.

Caring Voices

2008-11-08T00:50:00.000-08:00

The company that gave me the financial assistance for Letairis is called the Caring Voice Coalition and may be found at http://caringvoice.org I thought it was called Caring Hands. My apologies.
According to Jean Sommers, Financial Team Lead, at the website, I will automatically be approved for financial assistance for Letairis in 2009. If I had been approved before Sept., I would have had to apply again. I sure hope that is how it works. It will be very nice not to have to worry about Letairis next year. Caring Voice was established in 2003. They offer financial assistance, education and caregiver support. I cannot say too many times, how grateful I am to them.
It is not just Letairis that is so expensive. Most of the treatments for pulmonary hypertension range from $30,00 to $150,000 per year. I am so happy I don’t have to go on Flolan as yet, if at all.
Flolan is administered through a permanent catheter placed in a vein in the neck or chest. It only lasts 3 to 5 minutes so it has to be continuously infused. A portable, battery-operated pump is worn attached to a belt around the waist or carried in a shoulder pack. It costs about $100,000 per year and as you can see, is very complex to administer. Home health care aids help patients maintain and administer the drug. Infections can be serious. Interruption of Flolan can be life-threatening. Side effects can include jaw pain, headache, flushing, nausea, diarrhea, and vomiting. As with Letairis, Flolan can increase a patient’s life expectancy. So, you can see why I am so grateful for a treatment given in pill form versus a treatment so invasive as Flolan.

Alzheimer's treatments

2008-11-06T20:49:00.000-08:00

There are two types of medications approved by the FDA that treat cognitive symptoms of Alzheimer’s disease. Cognitive symptoms affect memory, language, judgment, planning, ability to pay attention and other thought processes.
Cholinesterase inhibitors prevent the breakdown of acetylcholine, a chemical messenger important for learning and memory. They can delay worsening of symptoms for 6 to 12 months, may more, for about half the people who take them. Aricept (Donepezil) has been approved to treat all stages of Alzheimer’s. Exelon, (Rivastgmine), and Razadyne, (Galantamine), have been approved to treat mild to moderate Alzheimer’s. Namenda, (Memantine), works by regulating the activity of glutamate, a different messenger chemical involved in learning and memory. It is the only drug of its’ type approved for moderate to severe Alzheimer;s to temporarily delay worsening of symptoms for some people.
Brian takes Namenda and Aricept.
For many individuals, Alzheimer's disease affects the way they feel and act in addition to its impact on memory and other thought processes. As with cognitive symptoms, the chief underlying cause is progressive destruction of brain cells. In different stages of Alzheimer's, people may experience: physical or verbal outbursts, emotional distress, restlessness, pacing and yelling, hallucinations, and delusions.
There are two approaches to managing behavioral symptoms: using medications specifically to control the symptoms or non-drug strategies. Non-drug approaches should always be tried first. These include recognizing that the person is not trying to be mean but these are symptoms of the disease and changing their environment to resolve challenges and obstacles to comfort, security and ease of mind.
Medications may be appropriate when individuals have severe symptoms or have the potential to harm themselves or others. Medications can be effective in some situations, but they must be used carefully and are most effective when combined with non-drug approaches. When considering use of medications, it is important to understand that no drugs are specifically approved by the U.S. Food and Drug Administration (FDA) to treat behavioral and psychiatric dementia symptoms.
As with all medications, talk to your doctor about what treatment may be right for you or the person in your care. A medication's effectiveness, and the side effects it may cause, can vary from one person to the next. For one individual, one drug may be more effective but have greater side effects. For another person, the same drug may be less effective but have no side effects.

Living with Alzheimer's

2008-11-05T18:06:00.000-08:00

Brian’s newest symptom is frustration when trying to make himself understood. He will see something on TV and come find me to tell me about it and by that time he has forgotten the words. If I am watching the same program I usually can figure out what he wants to say. I have to change the TV stations for him so I pay attention to what he watches so that hopefully it is easier for him to make his point. "Writer" is actually David Hasselhoff who is guest staring on a sitcom. Brian recognized him from his old show "Night Rider."
Brian loves to watch certain TV shows and movies, although his attention span for movies now-a-days isn’t very good. He is not able to work the remote anymore, let alone put a movie in and play it. He used to sit and watch the TV for hours at a time, now he is in motion about ¾’s of the time. At first I thought he was just checking to see where I am, but he is up and down even when I am sitting with him. And as I have said before, we go to bed and he is up and down for about 20 minutes before he settles in for the night.
He can’t focus on reading and if he could, he can’t comprehend it. If I point at something, he doesn’t understand where or what I am pointing to. Once in a while when he talks to me, he faces the other way as if I am on the other side of him. He knows I am there, just not sure where. More often than not, I help him with getting dressed and using the toilet.
Brian hasn’t been depressed (that I can see) or angry which are common to people living with Alzheimer’s, or any chronic disease. Brian has always been a "what you see is what you get" kind of guy. He has always depended on me for financial matters, keeping track of social events and running our household. He is very comfortable letting me take care of him. He loves and trusts me and knows no one could do it better at this point in our lives. So he hasn’t had the fears that others have about what to expect with the disease process. His only expectation is that what ever happens, I will take care of it for him. It might sound simple but Brian is not a complicated guy.
Brian lost his job as a forklift operator early in the disease process. He tried temp work but wasn’t able to learn new skills. The last year he worked was in the garden department at Walmart. As his symptoms got worse, I would go in the back and write down his schedule for him and tell him when to work. He liked to get to work at least an hour early to familiarize himself with the store each day. I drove him and picked him up. He got where he couldn’t read anymore and when stocking shelves, just matched like items with like items not code numbers. If he had a major problem trying to find or do something, he would call me for help. He likes people and the other personnel loved him. We managed to keep his disease under wraps until he went out on disability.

Alzheimer's

2008-11-04T22:11:00.000-08:00

I have done a lot of talking about my disease processes. Brian wants people to know about Alzheimer’s and living with that disease process.
Alzheimer’s is the most common form of dementia that as many as 5 million Americans have. It destroys brain cells, causing memory loss, changing thinking and behavior. It gets worse over time and it is fatal. It is the sixth-leading cause of death in the U.S.
By the time Brian went in for diagnosis, it was fairly easy for the doctors to see the damage Alzheimer’s had done to his brain. His CT scan showed his cerebral cortex, the outer layer involved in memory, thinking, judgment and speech. had shrunken due to the disease process. He wasn’t able to perform simple tasks such as drawing a clock or remembering three words that the doctor had given him to remember just a few short minutes before. Brian was already at the moderate stage of the disease process.
As we age, we have occasional problems remembering and maybe some slowed thinking. With Alzheimer’s, serious memory loss, confusion and other major changes in the way our minds work are not a normal process of aging. The brain has 100 billion nerve cells (neurons) that communicates with many others to form networks. These networks have special jobs such as thinking learning and remembering. Others help us to hear, see and smell and tell our muscles when to move. In Alzheimer’s, the networks break down and eventually they die. Scientists are not really sure where the breakdown starts.
Two abnormal structures called plaques, (protein deposits that build up between nerve cells), and tangles, (twisted fibers of another type of protein that form inside dying cells), are prime suspects in damaging and killing nerve cells. Scientists are not absolutely sure what role plaques and tangles play in Alzheimer’s disease. Most experts believe they somehow block communication among nerve cells and disrupt activities that cells need to survive.
Brian has early onset Alzheimer’s, meaning it started before he was 65. Brian is only 57. It may affect people as young as those in their thirties.
Alzheimer’s had no current cure, but there are treatments, such as Aricept for the symptoms. Most of what we know about Alzheimer’s has been learned in the last 15 years. There is an accelerating worldwide effort under way to find better ways to treat the disease, delay its onset, or prevent it from developing.

And Then...

2008-11-03T19:14:00.000-08:00

In 1992, Kevin called me at work to tell me the fire department was there and I needed to come home. When I drove up, there were three trucks and four fire department cars parked out front. They had heard of our haunted house and wanted to see it. So Kevin and I gave them a tour. They were impressed but also offered several safety suggestions that we took to heart. That year was the first we used walkie-talkies so that we knew where everyone was at any time so in case of a fire we could tell the fire fighters. We made the second floor more accessible to exiting in case of a fire. It was another great year!
In 1993, a few hours before we were due to open for the Haunted House tours, we were told we could not open without a permit. We would have had to wait until Monday to get the permit and of course, by then Halloween would be over. After frantically making some calls, I found out the permit was necessary because it was thought we were charging money. Our signs clearly stated we accepted donations for whatever charity we were giving to that year. No one was required to pay to go through the house. It was just pure fun. We didn’t need a permit after all!
The first year all of our kids got involved, there was a huge storm the night before the party. They had worked tirelessly on a maze out in front of the house and a huge set of experiences from labrynth that went from the side yard all through the back yard. Wayne had built a pirate ship in the pool with skeletons for the crew (we even had a ship launching ceremony!). It was all in shambles and the pirate ship looked like a shipwreck. Everyone rallied together and we were able to repair a lot of the damage in time for the party that evening. The pirate ship we left to look like a shipwreck because frankly, it actually looked pretty good and intentional.
Each year we tried to out do the past year and we all were just getting exhausted. We decided that 1994 was the last year for the party and the haunted house. It was a bittersweet party but we have so many memories to last us a lifetime.

Halloween

2008-11-01T16:27:00.000-07:00

Last night was Halloween. We spent the evening at our friends who decorate on a good scale. We go over for dinner and to watch the trick or treaters enjoy the props.
From 1976 to 1994, Brian and I had a Halloween Haunted House that really was incredible. We had a two story house and every room was decorated with a different theme each year. We couldn’t do it all ourselves. We have wonderful friends and family that helped us. We would start planing in April and start gathering supplies. Not having any budget, (or as we called it, "A beer budget"), we grabbed anything we could for free. We made most of our props because the wonderful Halloween props that are available now were not available then. We used tons of cardboard, latex, fiberglass and spray paint.
Work started usually in August with people over working every weekend. Kevin and Wendy were kicked out of their rooms and had to sleep in the family room downstairs for the next few months (they loved it!). At first we stapled and nailed cardboard right to the walls. Later years, we made frames to attach the cardboard to and reduce the damage to the house. I swear, if someone in a helicopter had flown over our house with a giant magnet, our house would be flying! And I am sure the local hardware store had his highest revenues during that time.
Wayne was in charge of building things for us. Charlie was in charge of making things move. Brian was in charge of the prop department, Mike was the Cardboard King and Colleen was in charge of keeping us supplied with chocolate chip cookies. The last Sat. of the month we had a grand party with as many as 250 people. Even though the party was so much fun, the most fun was in those weeks leading up to it. As the party got closer, then we all worked almost every night as well. We never laughed so hard or so much!
Brian and I tried to keep the use of our bed during this time so it was nothing to sleep with hundreds of spiders including a giant spider over our bed, as we did one year. Another year we slept with Lizzie Borden, and another year we slept with the plant from Little Shop of Horrors. At this time we were very involved with the local little league. The league needed to raise money so Brian and I offered to open our house for a few days to accept donations for the league providing the league helped us take tour groups through. We ended up making $700 for the little league that year so we continued to open our house for about 4 days each year to raise money for charity. We raised money for Earthquake Relief, Make-A-Wish and others. Being big Disney fans, we were able to send several ill children to Disneyland through the Make-A-Wish Foundation. We would ask for a $1.00 or $2.00 donation and no one was turned away for lack of money. Many of the neighbor kids came through several times a night. And then......I’ll tell you tomorrow!

Scleroderma and Pulmonary Hypertension

2008-10-31T22:16:00.000-07:00

Scleroderma is a connective tissue disease. Collagen is the strong fibrous stuff found in connective tissue. Connective tissue connects and supports parts of the body and is dense with blood vessels. While Scleroderma means "hard skin" this same hardening can happen to an organ or tissue because of rapid growth of too much collagen, which is my case. Most often death with Scleroderma is caused by pulmonary disease. About 150,000 to 300.000 in the U.S. have Scleroderma in the U.S., striking 4 times as many women as men. The cause of Scleroderma is unknown and there is not presently a cure. Scleroderma can lead to PH because it can cause scar tissue to build up in the lungs or heart. Roughly a third of systemic Scleroderma patients may develop mild PH. When mild, it can often go undetected for a number of years, not progressing. When symptoms are prevalent such as increased shortness of breath, it is much easier to diagnose and also much harder to treat. It is not known how often mild PH grows into serious PH as mine has. My pulmonary function tests have shown I have had mild PH in my lungs for several years. If a person has a diffusing capacity of less than 55 percent predicted, they probably have PAH. This is the ability of oxygen to pass from the air sacs of the lungs into the blood.
If a patient does not have a severe form of PH, doctors usually begin treatment by lowering lung pressures with calcium channel blockers, (Norvasc, Procardia, etc.), that come in pill form and are much lest expensive than alternative treatments. Unfortunately, few patients respond to this treatment.
If calcium channel blockers don’t work or a patient is in Class III, then endothelin receptor antagonists (traclear, etc.), some form of prostanoid theraphy (Flolan, Iloprost, ect.), and/or phosphodiesterase inhibitors (Viagra, etc,) will be considered. Letairis, which is what I just started is an endothelin receptor antagonist. Endothelin is present in the blood. Patients with PH triggered by other diseases tend to have higher-than-normal levels of it. It binds to receptors in the layer of smooth muscle cells that surround it. Once it binds. it causes vasoconstriction and retards the growth and development of new smooth muscle cells. It may also increase fibrous tissue formation. Designer molecules made in labs can keep endothelin from binding to receptors and are called endothelin receptor antagonists. Their great advantage is they come in pill form.
Before Flolan was available in 1995, class I or II PH patients lived an median of 6 years . Class III patients (of which I am one) lived 2.5 years and class IV patients lived only 6 months. Scleroderma patients with PH do not appear to live as long even with Flolan. When Scleroderma patients die it is usually from pulmonary disease, particularly pulmonary vascular disease. Letaris has shown that class III life expectancy can be increased to 5 years. I think this is with a patient whose PH is primary, not secondary such as me whose primary disease is Scleroderma.
My references regarding medical information come from the Pulmonary HYpertension Association, the Scleroderma Foundation, The Scleroderma Research Foundation, and The International Scleroderma Network. I am not a doctor, just a patient. Scleroderma affects each patient differently. What works for one patient may not work for another and may even be dangerous. I make an effort to provide reliable information. However, it is up to you to verify all facts and consult your own doctor before starting or discontinuing any treatments.

What is Pulmonary Hypertension?

2008-10-29T23:56:00.000-07:00

I thought I would explain what is pulmonary hypertension. When pulmonary hypertension is diagnosed with no known cause, it is called primary pulmonary hypertension. When the cause is known, such as with me, the cause is Scleroderma, then it is known as secondary pulmonary hypertension. It is rare and without treatment it is usually a rapid fatal disease.
Blood enters the right side of your heart carrying very little oxygen. The right side of your heart pumps the blood into the arteries of your lungs. (Here is a fact: this is the only place in your body where your blood is blue). These arteries grow smaller and become arterioles, about the size of a hair. They are so small, the red blood cells can only go through one or two at a time. They then go through even tinier capillaries that surround the air sacs in your lungs. Here they take on oxygen from the lungs, return to the left side of the heart and are pumped out to the rest of your body.
PH usually starts in the lungs. My lungs are scarred from the Scleroderma and they don’t have the elasticity your lungs have nor the ability to move the oxygenated blood through the cells due to narrowing and scarring (fibrosis). My arteries and arterioles are stiff and scarred as well restricting blood flow even more. So I had high blood pressure in my lungs first as my lungs worked harder. When the lungs can’t work well, the pressure backs up into the heart which works harder to compensate for the lungs to push blood through. Eventually, your heart can’t keep up and there is less blood circulating in the lungs to pick up oxygen and you become tired, dizzy, and short of breath. Fainting, edema, chest pain, and dry cough may be present. You may feel like you are choking or hungry for air. I can feel my heart beat, clear into my eyeballs. It will thump, flutter and do other strange things. I have had fainting problems for several years. I get up to do something and I can feel the blackness closing in. I have to lay down for a while then get up and try again. It usually goes away. My oxygen tank has helped a lot.
Not much is known about PH, even less is known about PH with Scleroderma. It is a disease of the blood vessels of the lungs and heart. Tomorrow I will talk about the little bit that is known about Scleroderma and PH.

TV

2008-10-29T00:20:00.001-07:00

I love Targets new TV ad showing such things as the new movie night which is staying home and watching a DVD. It shows the new coffee spot which is at a bistro table in your own kitchen. With the drastic changes in the economy the past few weeks, we are all having to make changes.
On the news tonight was a segment about people giving up important medications in order to have money for food. I can identify with that. Even though we have Kaiser (Brian will have it again in January), prescription drugs are a major part of out monthly cost of living. Yes, I did get a grant for Letairis, and Brian will hopefully get his next two months of aricept free from the drug company. There are other drugs we take to help our disease processes. Each month I have to decide which ones I feel I can get by without and which ones I really need. Month before last, I went without prednisone. My doctor freaked when I told him because I guess you can’t quit cold turkey like that. This month I went without my thyroid and my chloresterol meds. Those of you who heard me talk this month probably noticed how gravelly my voice was. This happens when I go without my thyroid med.
The news said that pharmacys are noticing a major change. There are a lot more prescriptions for anti-depressants and a lot of people are not refilling some essential drugs that could mean the difference between life and death, such as high blood pressure pills and anti-seizure medications. The news offered 3 solutions: 1) see if your drug manufacturer offers help in defraying the costs of your meds. 2) See if there are generic drugs available that offer the same benefits as a brand name drug. 3) If you have to cut back on your meds, talk to your doctors about which ones are the most necessary and which, if any are not. What ever you do, do not quit your meds cold turkey for even a short time as I did my prednisone since that is dangerous.
I think the next year will be a series of financial ups and downs. I think we all will rethink our spending habits as the Target ad is already showing. Talk about being in tune with today’s consumer! I commend Target for their insight. We have to decide what is important to living a full-filling life and what is not. I think we are going to find that things we couldn’t live without before are not that necessary now. My hope is that we become happier people without the stress of keeping up with the Joneses. By cutting back on spending hopefully we can cut back on our work hours and take time to enjoy our families and friends and to just smell the roses.

Marriage

2008-10-27T17:37:00.000-07:00

I mislead you yesterday when I said my pills were $33 each. That would be true if I had a 3 month supply. I only have a 30 day supply so the cost is $110 per pill. I thank God each time I take one.
There is something to be said for 37 years of marriage. Brian and I were very young when we got married. It wasn’t until a year or two after we were married that our friends started living together without benefit of marriage. That never occurred to us. We both lived at home and then we were married. Now we have been married almost twice as long as we were single. We also waited five years before we had our kids which I think gave us a much more stable marriage. We have had a lot of fun along the way, playing some great pranks on each other and when we had Wendy and Kevin, they were not exempt. I think one of the secrets to our marriage is that we have made it fun. We have both grown as individuals, pursuing things that interested each of us separately. While we are secure in the knowledge that we are not dependent on each other to feel validated, we have found that our lives are much happier doing things together as well. As time went on, we found we were doing more things together than not. It of course helps that while Brian has a temper he has never used it against me. I didn’t even know he had a temper until after we were married. And I very seldom get angry so we compliment each other. We also respect each other. We have never said anything to each other that might hurt the other’s feelings. I, myself have never let those thoughts enter my mind. I think if you look for faults you are going to find them. Being a Pollyana, (put a long blond wig on me and Haley Mill’s cute face instead of my prednisone chipmunk cheeks, I would look just like her), I have always tried to find something good in everything and everyone. So always seeing the good in Brian is a natural for me. We have always said please and thank you to each other for everything, no matter how small. I am a firm believer that family comes first. Too many people treat others nicely because they want people to like them, then treat their family pretty crappy.
Now, even with his Alzheimer’s, Brian still tells me thank you each time I fix him a meal. He always tells me it is the best meal he has ever had, even if it is just soup and a sandwich. Sometimes Alzheimer’s patients personalities change and they lash out at loved ones. If anything, Brian is even nicer and more grateful for everything I do for him. And I am so happy that I can still do the essential things he needs.
This past year, we have both had some embarrassing moments but after 37 years of marriage, they are not embarrassing to us. We just help each other put things right and then laugh about it. I am sure that on this journey of ours we will have many, many more such moments and I hope that we will always be able to laugh.
Brian is having a harder time getting his thoughts across. But after 37 years of marriage, I can pretty much finish his sentences for him. I think this really keeps his frustration level much lower than what some people experience when they cannot get their thoughts across to others.
My hands don’t work right any more. Oh, I don’t have the stiffening and crippling in my hands that most scleroderma patients have. But I have the dropsies. And unlike Phebe on the tv show Friends, I am not very bendy. I can’t bend over to put my shoes on so Brian often has to try and help me. And several times a day I have to call Brian in to help me in my craft room and pick up my messes. We laugh and tell everyone that I am the brains and he is the brawn. Again, we complement each other.
I am sometimes baffled by the fact that we are both hampered by such harsh diseases. We have learned great coping skills throughout our marriage that so far have enabled us to enjoy each day and appreciate our time together.

This N That

2008-10-26T23:23:00.000-07:00

I took my first $33 pill Friday night. Most nights I do not sleep well, but I slept well Friday night. Sat. morning, Brian and I got up and got ready to go to our grandson’s birthday party. We picked up Kevin around 12:45 and had a wonderful time at Joshua’s 7th birthday party. He is so sweet and loving. Our grandkids, Joshua and Melissa, are such a joy in our lives.
We took Kevin to work at 4 p.m. and went home. I was exhausted when we got home at 4:30 so after I helped Brian get settled I laid down to read and maybe take a nap. I ended up going right to sleep and other than helping Brian a couple of times, I slept the night away, getting up at 10 a.m. this morning. I thought maybe the Letairis was at fault for my extreme fatigue but I am much better today. I haven’t had any other effects of Letairis (knock on wood).
Fatigue is a major concern for me. I tried to explain to one of my doctors once that some days I am so tired, it is too hard to hold my head on my shoulders. Sleep is another problem. I have always been a night owl. Since Brian has been off work he has gradually come over to the dark side too. I try to go to bed by 2 a.m. or else I get Brian and Belle, our cat, telling me it is time for bed. Brian used to go right to sleep and I take a vicodin and read until my body settles down enough to let me sleep, usually after a couple of hours. Sometimes I think I am ready to sleep, turn off my bedside lamp and immediately I am wide awake again. Some days I don’t get to sleep until 9 a.m. or later. Then I will sleep for 10 or 12 hours at a time.
For about the last week or more, Brian has been having trouble falling asleep. He gets in bed, then he will get out of bed, then in and out and in and out. He kind of wanders a bit but doesn’t know what he wants or needs. After a bit he will finally settle down and sleep. Some Alzheimer’s patients have a tendency to take off and wander outside of their home, getting lost in the process. I have always thought Brian would not be a wanderer but now I wonder if Brian’s behavior now is indicative of a wandering soul in the future. It isn’t just when he goes to bed that he is up and down, he doesn’t seem to be able to sit still for long either and is up and down and walking around a lot in the daytime too. If this is all I have to complain about today, then life is good!

Grant

2008-10-24T23:19:00.000-07:00

Great news! I was awarded the grant for Letairis! I received my first 30 day supply by Fed Ex today from Accreedo, the pharmacy that handles the special drugs for PAH patients (pulmonary arterial hypertension). That was so fast! I only sent my form back by mail to my doctor the beginning of last week. I will take my first 5mg pill tonight. It will take several months to see if this drug is working. There are 10mg doses as well if this dosage doesn’t do what we hope. The side effects are: lowering of red blood cell counts, swelling from fluid retention, stuffy nose and inflamed nasal passages, hot flashes, heart palpatations, red and sore throat, stomach pain, constipation, shortness of breath (your patient chart shows sob, so don’t take it personally), and headache. Several of these side effects I already have due to other causes, so I think I can handle these just fine. Some of the drugs I have taken in the past have had to be weighed as to whether the benefits out weigh the side effects. Prednisone is such a drug when taken long term as I do. Letaris doesn’t seem to have that problem. Every couple months I have to perform the 6 minute walk test. I am not sure how I am going to do that when I cannot walk more than a few feet partly because I cannot breathe and walk at the same time but also because of the avascular necrosis. Scleroderma has filled my body with scar tissue and that and prednisone have reduced the ability of my blood to get to my hips and legs. It is very painful to move and walk and weakens my bones. Without prednisone, the alternative is much worse. The 6 minute walk test is to see if the drug is working to slow down the disease process and help me breathe a little easier. I am sure my team of doctors and I will figure out something to test the effects of letaris. Hopefully I will eventually see improvement in my day to day living.
I have a wonderful team of doctors at Kaiser. They include a pulmonary specialist, rhuematologist, gastroenterologist, and a doctor who specializes in critical care. If I see one doctor, within one day all of them have the info from that visit and they regularly communicate with each other about my disease process. I see my gastro doc in a about 2 weeks. Because of my anemia, it is believed I have a slow bleed in my stomach so will probably have a endoscopy scheduled shortly thereafter. I haven’t any major digestive problems for a while so I am definitely due for an endo. For me, it is a great way to nap my day away.
I have always had wonderful care at Kaiser. I suggest if you do not like your doctor or the care you are receiving, find another doctor. They are out there and it can make a huge difference in how you view life.

Is This Enough?

2008-10-23T20:16:00.000-07:00

Brian lost his Kaiser coverage last month and this month we had to pay full price for his aricept. It runs over $200 per month. He will get his Kaiser coverage back January first and will go back to paying $50 per month. This is a tier three drug, like an orphan drug but many more people need it so the price comes down. In the meantime, aricept does have a program that we qualify for if you have a certain income level and no drug coverage. They pay the costs of the aricept. Obviously, it is a great program. But isn’t it a shame that people on social security disability have to pay the high costs we pay for our medicines that are literally life saving?
The estimated cost of bringing a single drug through screening processes and FDA procedures to obtain approval is between $350 – 500 million. Companies spend nearly $21 billion just on research and development for treatments and it can take up to 10 years just to bring a single drug into the market. Prior to the Orphan Drug act, very few orphan drugs were brought to market.
In 1983, the Orphan Drug act was introduced to facilitate the development of orphan drugs and other medical products by offering incentives such as seven years of marketing exclusivity after approval of the orphan drug product and offering research grants to reduce the costs incurred in the development of orphan products. A rare disease is considered one that occurs in less than 200,000 individuals in the U.S. Since passage of the Orphan Drug Act, more than 300 drugs to treat rare disease have come to market to help an estimated 12 million Americans. This has been confirmed online by Janet Woodcock, director of FDA’s Center for Drug Evaluation and Research.
My question is, Is this enough? There are over 6000 recognized rare diseases. I am grateful they have Letairis for me (especially if it works) and Aricept for Brian. But my heart goes out to those parents who’s children are diagnosed with a rare disease and there is no drug to help them. I know that companies have to answer to their shareholders to make money and yes the Orphan Drug Act has helped. I can only quote statistics I have found. I don’t have the answers. I just feel so badly for those poor parents and their children who still need a miracle drug. I feel guilty to be so lucky that Brian and I have drugs to help us.

Letairis

2008-10-22T20:13:00.000-07:00

Yesterday I told you about the new drug Letairis. It is so expensive that my first co-payment is $3,377.80. No, I am not kidding...Because of my other drugs, I am in the donut hole of my RX coverage but I will reach my cap and my coverage turns to catastrophic and I only pay about $233 for Letairis per month after that until the first of the year when I have to reach my cap again. There are only 8 pharmacies that carry this drug and I was called by one of them on Monday to set up the program. I was refereed to a company called Caring Voice that helps people like me with their co-payments. They are located in Pennsylvania while I am located in California. Anyway, they are writing a grant that will probably cover most if not all of my costs for this drug. Imagine that, a grant that I don’t have to pay back from some folks who don’t even know me. Just when I was just happy that Kaiser will pay a big chunk of this drug that costs $35,000 to $45,000 per year. I should know in the next week if the grant goes through. Yes, George, it is a wonderful life!

Heart Catherization

2008-10-21T18:10:00.000-07:00

So, I had a heart catherization procedure about two weeks ago. I wasn’t looking forward to it. Although I live with pain on a daily basis, I am against adding to my pain no matter what the procedure. But my doctors have been after me for the past year to have this procedure so I finally agreed. And you know what? It wasn’t bad at all. In fact, I found it much more ticklish than painful and got laughing so hard I couldn’t keep still. The doctor and nurses couldn’t believe how ticklish I was and said most people just lay there. They never had anyone giggle let alone out and out laugh. They give you something to take the edge off and use a local anesthetic. I think most people go to sleep but I struggled against it and stayed awake. How often do you get to see your own heart, let alone watch a wire in it. I thought it fascinating. The results were not good. In addition to my pulmonary fibrosis (lung scaring from scleroderma, I have pulmonary hypertension, high blood pressure in my heart. Had this happened five years ago, there would have been no good treatments available. But last June, 2007, a drug called Letairis was approved for this rare disease. It has been found to give as much as an additional 2 and a half years to one’s life. And you can see what a difference a few years can make. The downside is that this is considered an orphan drug, and is very expensive. But you do what you have to to buy time in this wonderful world. And today I found out there are more wonderful people out there that I will tell you about tomorrow.

2008-10-21T18:09:00.000-07:00

Monday, October 20, 2008
Motorized Wheelchairs
I love my motorized wheelchair. With my avascular necrosis, somedays it hurts so badly to move, let alone walk. And to breathe and walk at the same time...well that is a laugh. To breathe and laugh at the same time...well....anyway, my motorized wheelchair is so great around the house. And it is so very comfortable, too. But what kind of company makes a motorized wheelchair that doesn't fit in a normal car. Yes, while my wheelchair is great at home, I can not take it with me. I have a regular wheelchair that will fit in my trunk, but it is bulky and heavy. And it needs to be pushed which Brian can not do any more. Oh, he can push ok, but he can not maneuver it or understand my directions. My motorized wheelchair would be so wonderful out in the real world. The makers don't come out and tell you that it won't fit in a normal car, you have to find out the hard way. My doctor ordered it, A Kaiser healthcare professional came out to my home, interviewed me, confirmed that I needed one and ordered it. The healthcare professional told me to let my landlord know I needed a ramp for it since every other apartment building has wheelchair ramp access except mine. I guess by law the apartment building has to have so many spaces for so many apartments. My apartment manager showed me an article in an apartment rental magazine that said apartment owners did not have to build ramps for their tenants. She said that to put in a handicap ramp would run $3,500 and that I could do it if I wanted to, but the money would have to go into an escrow account first. Now, I am sorry, Miss Landlady, I do not have $3,500 but you do have about $2000 of our money on deposit. Seems like we could reach a compromise, but no can do....so even if I could get the chair into my car, I don't have a ramp. If I could figure out how to get the chair into my car, I could buy a portable ramp that I could use if space was available. Anyway, I digress....watch the ads for those motorized chairs. They state how wonderful they are for maneuverability in your home. And I tell you, it is so wonderful, it really is...but no where does it state it doesn't work in a car. Easy, you say....Get another car. Yes, I could but this car will be paid for sooner rather than later and another car just means a new loan. I am able to drive now, but with the avascular necrosis in my hips, that may not be a possibility down the line. So, while having the chair with me when I go out would be nice, I can get by without it for now so I just have taken a wait and see attitude. I guess if it works, don't try to fix it.

Friends

2008-10-21T18:07:00.000-07:00

Sunday, October 19, 2008
Friends
It just amazes me that we have such amazing friends. Not that they are amazing but that we have so many. Brian and I do not go out much. (Some days we work at the art of doing nothing. Won't be long before we have that perfected!) If we do, it is usually with Wendy or Kevin, our kids, or Kim and Wayne, our best friends who just happen to be Brian's sister and her husband. And they are so wonderful about helping us if we need it. Getting us drinks so that we don't have to get up off our butts. Helping Brian find the bathroom maze that he faces whenever we go out. That is so nice, but they are family and they are more in tune with what we are going through. But our friends do the same things too. Last night at our Disney meeting, if we needed anything, someone was there who was better able to get it for us. If we needed trash thrown away, it was gone. It humbles me when people help us. I had to learn to accept it because, frankly, it sure makes living easier. But our friends do it without thinking twice about it. And that is what amazes me. The capacity of the human heart to care and to love unconditionally. That is one of our greatest reasons to go on battling our disease processes. To all of our friends and relatives...thank you. You are what makes us want to keep going each day. Thank you!