PHCentral - PAH: The Complete Resource: Coping With PAH

Hi,I came in contact over the internet with PHCentral out of desperation; desperate to find out why my PCP had so much concern in his voice over my echo results. Now I know. I am thankful for him and Central for being there, then and now.

Because we live in such a chaotic world to many things can and do go wrong. This plays havoc on every living being and creature. What wonders it would be if we could live a simpler life.

My PCP is staying in the area. I will have to travel 45 mins to see him but, it is worth it to me. It is a beautiful drive and will be quite relaxing going to and from. His new office will not be open until Sept. but, I will stay with his PA until that time. The PA is excellent as far as PA's go. When his new office opens I am looking to transfer all of my care over to the Drs. and hospital he is associated with. Right now I have a hospital and drs. out my back door but, I have never had good results with them. My PCP is very aware of the difficulties I have had with their cardiologists etc. Even he was not happy with my treatment through them.

I have been having quite a bit of swelling in my legs, ankles, and feet. Norvasc could be causing the problems in my foot size but, I can't live without it as one of my meds. I am up to 80 mgs of Lasix and if I don't show improvement with that within a week I am to go back and see him. I had to back to wearing my larger shoes. Now my wardrobe is complete. Women's and Plus Sizes.

This weight gain has created a new physical problem; the beginning stages of diabetes. It did not surprise me. I have been preparing myself for this mentally in the last year. Having been hypoglycemic in my younger days I knew at sometime in life I would be faced with this fact; now it is here. I will be doing a diet and he increased my lasix in hopes that this will control it; I hope it will. However, when I got home his nurse called and made an appointment with my eye dr. and endocronologist for further consoltation. It made me wonder if he down played what he really felt or perhaps it is just a matter of protocol.

I saw a program where in order for one to lose weight you have to have a diet that fits your physical makeup. Which makes sense to me. Not everyone can be on the Atkins diet and achieve results. So perhaps this is why I have been struggling this pass year to get the weight off. Yes, some of it is fluid, and because I have not felt well enough to exercise by walking; that is another factor. So, now that I have been feeling better, due to the CPAP, I can again go walking and with this new diet maybe I will see results.

The more I think about it the more I know I got into trouble this way because I have not been able to walk since Nov. I have always watched my diet. None of my blood work in the past indicated any problems until now. I am confident if I get to walking I will do fine again.

I have joined ranks, faster than I would have liked, with the age of reminiscers. I can now understand the reason for reminiscing as one gets older; it is more endearing than the present and future.

And so, today, I have been thinking about my dad. I suppose Father's Day had something to do with it. But, I don't remember thinking of him these past years during this time. Age? Yes, I think so. I have come of age. The age when memories slip in unawares. You try to grasp them because as a youth you did not find them as important as they are now. We've tucked these precious and not so precious memories way down inside of our souls and when the right time comes we grab hold of one, take it out and look long and hard at it. That is what I am doing today. Pulling up a memory of my dad that is as precious as gold in my mind's eye. It all started with a comment I received in an email. The person referred to "sipping wine". In that moment of reading this phrase I pulled out a wonderful time in my life with my dad. My children have heard the story, at family reunions we younger siblings tell the story again and again to our older siblings. But, today that memory is more precious to me. Perhaps it is because I can identify more with his illness than ever before in my life.

My father was fifty years old when he died and I had just turned sixteen. He was a copper miner, a good mechanic, a loving and good father , a man, not unlike others, with his own idiosyncrasies. He loved fishing and camping. He had his first heart attack when I was three months old. Many times he was in the hospital. He died from silicosis and heart failure. I am almost convinced he had PH too.

During his last year of life he was totally bedridden. We took turns, my four other siblings and I, reading to him and watching his small TV. We helped him walk to any room of the house when he felt up to it. We played his favorite music on the phonograph. Sometimes we would eat with him if he could not come to the dinner table. We changed his oxygen tank and emptied his urinal. He was a part of us and we were a part of him. It was a bond that not many children experience in their life time. We did not have the tensions of what other teens and young people go through with a parent. The pulling away; preparing to leave the nest syndrome. We, without expressing our thoughts, pulled together. We all knew his days and our days with him were ending.

Under the doctor's instruction my mother was to give my dad a shot glass of whiskey, once a day, to stimulate his heart. On one particular evening my mother went to a friend's house for a visit. She never worried leaving us alone with him because we all knew how to care for him. She came home about three hours later and the five of us were sitting in the living room doing our homework and watching TV.

She entered the living room and asked, in a somewhat panicked voice,"Who gave your dad his shot glass of whiskey?"

Suddenly all heads went up and we looked at our mother holding the near empty whiskey bottle in her hand.

We all looked at each other, stunned at first and then uproarious laughter billowed throughout our home. We had really stimulated our dad's heart. He was one "happy camper" that night.

One by one he called us into the bedroom and explained that he did not get his shot glass of whiskey. Who of us would have thought to check with one another to see if he did or not? And so each of us willingly,without noticing that the whiskey bottle was nearing empty, gave him his night on the town.

We went to bed that evening with the happy ramblings of our dad echoing throughout our house. Occasionally, before sleep enveloped us, one of us would start to giggle and the rest of us would join in. The following morning, at breakfast, we were admonished to check with one another before giving him his one and only "medicine".

My mother had failed to tell us that before she left she had also given him a shot glass.

Saturday my daughter Maria and I watched the Early Morning Show on CBS. Dr. Malikka Marshall was on. She was talking about Chronotherapy and how beneficial it was for people taking medicine. I could not believe what I was hearing.

In my diary of February 10th I told of how I started taking my meds at certain times of the day. I had been taking my Nadolol, Diovan HCT/120 in the evening. The reason I did this; I had read that a person is usually going to have a heart attack sometime in the early morning hours. I decided that, if that was the case, perhaps I should take my meds at night to give me more protection. So, I did just that. Then when the drs. started to prescribe more meds; Norvasc, Lasix, Potassium, and Lipitor I was balming out during the day. I could not function. I started fooling around trying to find a better time to take them. I now take my 80mgs. of Lasix in the morning; Potassium about an hour after my evening meal; Norvasc, Lipitor, Nadolol, and Diovan between six and seven in the evening. I quit balming out over the meds. But, I was still tired, not as bad, but still tired. Then the miracle of the PigMask. My new evening "snout" gives to me all the bountiful rest and energy I need for the next day. I cannot believe how wonderful it feels to be "rested" and with renewed energy.

Back to Chronotherapy. This therapy is practiced in Europe and is just now coming to the U.S. It's a therapy that helps you to learn to take your meds according to your "body clock". According to Dr. Marshall I was taking my heart meds at the right time. My PCP told me to vary the times I took my meds, I figured them out according to the way I felt, what I had read and Dr. Marshall confirmed what I did. Believe me I have noticed the difference. I am a believer in Chronotherapy.

Tomorrow Lee and I are flying to the Big Sky Country. It will always be home to us; but,only the home of our youth. Too many years have passed to make it "our" home. We will be going to Kalispell, Mt. and then to Butte, where we both grew up.

I am debating within myself about going up the "GOING TO THE SUN HIGHWAY" outside of Kalispell. It is a breathtaking ride, not only of beauty but, one climbs approximately 5,000 feet on a narrow two way hairpin road. Lee's sister drives it many times during the year and I am confident of her skills. But, I am not a person who particularly cares for heights.

I have had a very busy week and have been very happy that the tiredness has left my body for now. Many times during the day I am surprised that I do not have to lay down out of sheer exhaustion. This has been going on now since I have been on CPAP. I started using it May 29th and by the first week I noticed the difference. I don't know how long this will last but, I am thankful for the reprieve.

It seems as if my body has quit being "angry" for the moment. I no longer feel my BP giving me trouble. They say you don't know when your BP is up; I always knew. Now I take it because I don't know. It has been down even more since the CPAP. I don't feel my heart pounding. I no longer have the "swishing" sound in my belly from too much fluid. I can still see myself walking down our long hallway and stopping half way down because I could hear the swishing of water coming from inside of me. I was dumbfounded. The second time I heard it I knew something was wrong. This was when I really got serious about seeing a new PCP. I can now bend over to velcro my shoes without feeling very pregnant. Is this the "calm before the storm?" I hope not.

However, the swelling in my feet and ankles never leaves anymore these days. I have an appointment with my cardiologist July 29th. I was going to change to another cardio but, I have not ventured out to seek a new one. I will see what he says in regards to the swelling. He is young and I want to give him a chance. He does listen to me when I ask questions and answers them but, he is just; okay!

I am so thankful for PHCentral and it's team of people who have helped me to this point in my life. Without their encouragement one would certainly feel totally alone with their illness.

I have thought of a title of an article I might pursue doing in the future. "Dying On The Inside; Crying On The Outside" I not only have PH people in mind but, all of us struggling out there with rare unknown diseases that regular doctors know nothing about; and yet make us feel as if we are hypochondriacs. This thought has been fueled by what is happening to my granddaughter KatieRuth. She will be seeing a new dr. the 7th of July. Perhaps he will be the one! The one to end all of the madness in regards to her sickness.

"If auto repair defect rates were the same as this, we wouldn't be alive today," said Donald M Berwick a peditrician who heads the institute for healthcare improvement, a non-profit organization in Boston."This is something that the public ought to be very concerned about. We ought to set a national agenda for dramatic improvement of care."

What did you say, Mr. Berwick? We are concerned; those of us who are sick, especially from rare diseases. They just won't listen and they don't have the time and the insurance companies get in the way. It took two years of my life to get the insurance company to approve my Sleep Apnea test. How do we get "dramatic improvement" when there are so many loops to jump through?

For what it's worth, I told my Sleep Test Dr. that everyone should be tested at least once a year for Sleep Apnea. It should be as important as an echo, blood work, etc.

My vacation took a lot out of me physically. Would I fly again? No, at this point in my life, absolutely not. My fluid retention would have to be permanently removed from me. The chances of that happening is "ziltch".

Did I enjoy my vacation? Yes, and yes again. I went up the "Going To The Sun Highway" and only had a couple of small panic moments. The height, depth, breadth and beauty of this trip was too exhilirating to miss. Being in a "panic mode" would have taken all of the breath taking beauty away and I did not want that to happen.

I have been running away from home these days. I just cannot get back into the groove of things after our vacation. I have spent 3 days this week, all day and evening, ignoring life in general.

Tuesday I just looked at what I needed to do to get by without any major cleaning. Laundry was the only thing I did.

My friend Judy and I spent the Wenesday morning and afternoon having my belated birthday lunch. We met people we've known for years out and about the same as us. We discovered a new Arts and Crafts store and explored it. By the time all was said and done it was time for us to get home and think about dinner. I did not; we went out to eat. I was not about to ruin a perfectly good day by cooking a meal.

Thursday I spent the time going for a potassium drawing; checked out an art antique mall; went and had help adjusting my "pig mask"; lunch with hubby and picked up my resized rings. I did not go home. It was a beautiful day and I did not want to spend it in the confines of our home. I went and found a picture frame in the new arts and craft store discovered the day before. I spent considerable time there figuring out what new craft I wanted to work on for the winter months ahead.

I must be on "strike"; although I don't remember conciously voting for this. I will be the one to suffer for my actions. Today is Friday and since last Friday all I have done is thoroughly clean our bedroom.

Diary, I will talk about my health another day. That is a story in itself; and I can't be bothered going over all the details.

I have been frustrated with trying to get back into the swing of things since our vacation. The edema is way out of control. My PCP put me on another 40 mgs of Lasix in May (total of 80mgs) and I have only seen a little result from doing this. I take the 80 mgs in the morning and it helps throughout the morning until about midday. Then my feet, ankles, legs and belly swell and my skin feels like it is going to pop from stretching; it actually stings from the stretching. Not good, not good at all. I am drinking less than a liter about 3/4 liter. I have given up my morning coffee (decaff) for the last several weeks. I have discovered that all I can do is sip on a drink, not drink it all in one meal like normal people do. My 3/4 must be sipped on all day. The only time I drink differently is when I take my meds. I take a 5oz cup of liquid to down them and I do that twice a day. That 10oz.'s is figured into the 3/4 liter. I am afraid to go any less until I talk to the doctor.

It concerns me that I have had to lay down and rest quite a bit to be able to perform a couple of tasks a day. This is where my journey began. I know that changes are going on inside of me. How much I do not know or if even the tests they do will show it. One just knows it is different even if the machines say otherwise.

Two years ago the 20th of July my mother passed away. My husband Lee has noticed that I never do good in July and so he has accepted that as part of our married life. I never recognize that I truly do hibernate in July. Only when the month is almost over and Lee and I talk about how miserable the month of July has been; do I recognize that this might be a factor in my life. My father died in July, one week and one year later in July my sister age 19 died from a blood clot in her lung, and my favorite Aunt (my father's sister) died 2 years and 2 weeks later in July. Well, diary it has truly been another miserable July. After all of these years I recognize it for what it is.......a miserable month.

My daughter will be going to see another Carcinoid Specialist in hopes of finding her tumor or tumors this week. She has Carcinoid and Carcinoid Syndrome. She has had to give up her career as a veterinarian. Our granddaughter is at Duke University now as I write. They are looking for her Carcinoid and she has Carcinoid syndrome. They are conferring with the specialist that my daughter is going to. Maybe just maybe the end of July will be a blessing.

I went to my heart doc yesterday and by the time I left his office I was ready to make an appointment with someone else. It seemed as if he never even heard me but, this morning I have come to the conclusion that he did. Because I am a people oriented person I have difficulty with people who are not. Also, I am beginning to see that he is a person who listens but, as he is listening he is quickly processing all the info and has come to a decision as to what the problem is and very quickly communicates his answer. Thus he has solved the problem, no need for belaboring it further. His personality is not capable of doing that. I have had two other heart docs and one was arrogant and the other was in to much of a hurry to make put me under for an operation I found out later was needless.

When I awoke this morning I contemplated all that happened in his office yesterday. A scene out of the movie "A Beautiful Mind" came to me. It was when John Nash was called into dicipher a code. He spoke to no one and got right to the task until he solved the problem. Talking distracts them and is needless because the bigger picture needs all of their attention. Thus my heart doc. I can see every action he made and the few things he asked me were minimal but, his quietness was not rudeness or non caring it was processing a course of action to take.

The course of action was to take me off of Norvasc and Lipitor and to get some blood work done for liver test. Come back in a month and we will go from there. I have threatened before to find another doc but, I like this young man and I think I have finally seen what it is I like about him. He knows what he is doing.

I put out a question to chat rooms to find out what others experienced with Norvasc. I was amazed that others had the same experience with Norvasc. One woman wrote that she had,"purple lips and fingertips", among other things. I noticed this past weekend that I was beginning to show signs of blue on my thumbnails in the half moon part of the nails.

We saw ourselves in one way or another. I saw my "spreading posterior" and yes, the way I sit down. Lee saw retirement for what it was; years of work , work, work and then no work. The children with busy lives of their own. I found the movie quite sobering.

When Schmidt's wife died I saw Lee's contentance change. We talked about it at lunch today. He said, "that he is always aware of my sickness and how close my life could be ending but, the reality of it struck him watching the movie." We both agreed that yes, he could die first and I would have to face the on goingness of life. It would be easier for me to than him and he realizes he needs a plan. And so we have decided to discuss this in more detail. His life, my life, our lives. We can no longer sit on the fence and gaze at the world we are now living in. Changes are coming and have been coming but, we have been to busy with the ordinary daily routine of life.

Schmidt was being more of a realist than his daughter when it came to the casket. What did it matter now as to what expense he put out. It was obvious he provided a nice home for her and clothes. Her crafts and collectibles were not cheap items. Sounds to me like she did not work and yet he must have provided the money for her to buy the stocks for her to sell to pay for half of the Adventurer for them to travel around in. He took care of her when he should have.

I do not want a casket. I told Lee and my family I want to be cremated. I also want them to celebrate my new life with Jesus Christ. Celebrate that I am no longer ill, that I do not have to cook another meal, that I do not have to go through the miserable July's. Let it be a joyful mourning. I know that is asking a lot but, my brothers and sisters and I celebrated when my mother died. She wanted us to celebrate and have one last meal together in the restaurant that our family always went to. We did that and had a place setting for her. She paid for it.

We then got the idea about going back to the home my father and her built. We did not know if the current residents would want seven people walking through their home but, we went for broke. The young woman and her son were as happy as we were to do this. She and her husband often wondered about the original owners and there we stood on the concrete steps our parents built asking to look at "our" home one more time.

They had just taken down the original chandilier from the dining area. They asked about the newspapers stuck in the walls and had kept some because the son was a collector. Those newspapers kept us warm until my parents could afford insulation. They insulated over the newspapers. They found poker chips. A reminder to us about the wonderful card games played in our small two bedroom one bath home for ten people. My older brother and sisters recalled more of the details of our home. How we dug out the basement with using a conveyor belt system to carry the hand shoveled dirt to the outside of our home. We saw my father's handwritten figures on beams and boards that he had measured. The new residents had saved all of this. It was so awesome. They treasured this house as much as we did. Thus we celebrated my mother's passing from this world into the next.

I bought these paper napkins with several Peanuts cartoons emblazoned on them. Sometimes you have to take what you can get on the grocery shelf.

"No, we no longer carry the pretty flowered ones that match your kitchen. Not enough demand for flowers these days; humor is in. This is the one sells now and that is what we are stocking. No, I don't have any flowered ones in back. None at our warehouse either. Sorry, we just don't make money on the flowered ones. You might try so and so's across town."

I feel that is what happens with rare diseases. Hospitals and doctors do not carry our brand of sickness. It just doesn't sell. There is just not enough demand for our type of illness. We are just not popular enough. We are not money makers for them.

Insurance companies run from us. Before, they ran to us telling us of their great and wonderful insurance plans for us all the while keeping their fingers crossed that we will not get sick.

Wouldn't it be great diary if drs. had medlegals just as lawyers have paralegals? Can't you just hear it?;

Doctor speaking to medlegal: "I want you to research out everything you can on this patients symptoms. I want to be able to narrow these symptoms down and focus on the ones most likely to be the cause of their illness. Start with the rare diseases first. I've concluded the search must be started in those files.

Once we narrow the field then I want a team in here reading, a team to do web search, a team to talk to other drs. or patients. etc. We have no time to waste this patient could be dying!"

Oh, well! Just like Snoppy I will have to be satisfied with my bowl of fresh water with no lemon.

I asked Cheryl to send me a picture of Sadie so, she did. Sadie is a beautiful little dog. She reminds me of one of my mother's dogs that she had during the last years of her life. All three of her dogs brought joy to her. She outlived two and the third is with my brother and his wife today. They doted on her and she them.

Diary, animals are such a healing factor in peoples lives. I remember when I first became conscious of that as a fact. When my father died Nanuke, a Siberian husky, became a part of our lives. I was not to interested in him as a teen but, to my younger brothers he was an embalmment to their pain.

Two of our children each had a pet. Spice was a fox terrier, miniature poodle (an absolute ugly duckling) that was so cute, we still talk about her today. Princess Leah (Star War Era) and I would often butt heads. She wanted to rule! Those animals brought joy into our lives and the lives of our children. Spice and Leah had running games throughout the house which was a shear delight to all of us. Healing, yes. They brought laughter into our lives and relaxed us from our everyday routine. Well, not all the time especially, when I had to remind or do certain duties that pertain to animals.

Pal will probably be the favorite in my life. He was a German Shepherd. My older brothers dog but, all of ours just the same. When any of my siblings or I were upset he was there. Panting and looking you right in the eye telling you;" If you throw a stick to me I will catch it over and over again until you feel better." It worked.

He warded off an attacker while my brother was doing his paper route in the early morning hours. I never could relate to Superman and Tarzan but, Pal, he was everthing you wanted in a hero. There was nothing phony about what he did.

So, Pal at family reunions is a healing memory to all of us. We all shake our heads in wonderment that he never passed the keys. He held onto them till his dying day.

It all started with the fact that my older brother and sister were beginning to drive. My father, being a mechanic on the side, always had an extra car in our yard to fix and sell. Periodically my father and mother would take a car and go for a drive leaving all of us at home. When we saw that they were out of sight we would all pile into the other car and go for a drive ourselves. My older sister had the longer legs between her and my brother. She would sit behind the stirring wheel and clutch, brake and gas. My brother would tell her when to do each. They got it down to a perfect science. We had a grand old time.

The mistake my parents made each time they left was, telling us when they would be back. We had to time it perfectly, so as not to get caught. When we were through with our joy ride we would go to the gas station and fill the gas tank to the point that we started out with. One time the gas station attendant asked us if we had permission to drive.

He shook his head in disbelief. I think that he would not have thought of asking if it had only been my brother and sister in the car. What parents would send two young teens out to get gas with all of those younger children in the car with them?

When we arrived home we younger ones were to stand in the street to observe and call out when we saw our parents car approaching. We had many false alarms because it was hard to tell if it was our parents or someone else headed in our direction.

One particular evening we barely made it into our dirt yard. Our folks were coming in one direction and we the other. We did not know if they saw the car we were driving pull into the yard. We all scrambled out. I headed out into the middle of the street with my younger siblings. My older sisters started to sweep away the tracks with their shoes. One sister tossed a broom from the back steps to my older brother; he in turn tossed the keys to her to put back in their proper place;my father's pants pocket.

From that moment on everything seemed as if it was going in slow motion. My younger sister and I screamed, "the dog!" My brother turned around to see Pal make a flying leap for the keys. My brother also took a flying leap. Pal won. We all stood in disbelief. My brother then started reaching down Pal's throat. I think the dog was too shocked to choke. My brother pulled his hand out of Pal's throat, nothing. With our parents only a block away, time stood still but, at the same time it was running out.

It was then my older sister came up with an idea. She went into the house while we finished sweeping up the tracks. When we felt that no tire tracks showed, we ran into the house to see what she was going to do. She had my dad's work pants with the pocket pulled out and pair of scissors. Walla! We are home free. My dad will think he lost his keys due to the hole in his pocket.

We were very quiet that evening. Every once in awhile one or two of us would go outside and look around for the keys. We had no grass and the ground was hard as a rock with a very small amount of loose dirt. There was no way they could be lost in the dirt. If anything they would stick out like a sore thumb. We tried to convince ourselves that Pal did not swallow them.

At the breakfast table the next morning each of us had our faces in our hot cereal bowls and our ears cocked for when my dad would discover his misfortune.

"Lorraine", my father said as he was sitting down," I need your keys to the car. I must have lost mine because of the hole in my pocket."

I could not eat or breathe. Let's just get this over with. Hurry up mom and give him the keys. The pain of this is to excruciating. I am breaking out in a sweat. I can't look at anyone else at the table for fear I would give it all away. I am too scared to know who is sitting on either side of me or across from me. I want this morning over with. I need to get to school. Hurry up clock! Hurry up mom; get onto what you need to do next to get us all out the door. I wanted to distract her but, I was too scared to think. Why doesn't somebody do something?

My mother came out of the bedroom, keys in hand, and walked behind me towards my dad. When my mother discovers something wrong, it is like looking at Atillia The Hun coming at you with all of his warriors. You have no chance in hell of escaping her discipline for the wrong doing.

My dad took the keys and as my mother started to walk away ,she reflectively commented to my dad," that he was wearing new slacks. How could he have a hole in his pocket? Let me see the pocket Frank," all in one breath these words came tumbling out.

I cannot stand living with a mother who is all wise and knowing. Why does she always have to think? I have a stomach ache and I am going to have to eat the sweat that is dripping into my cereal bowl. Why can't she be one of these mothers who is too tired to get up and get her kids off to school.

My dad pulled his pocket out. My mother looked at it and declared that it had been cut.

"Well, why don't you change into another pair of pants and I will fix the pocket later," my mother said.

We are free. It worked and only eight of us knew the truth. Wouldn't be good for all ten of us to know the truth, that was for sure.

As my father came back out from the bedroom to hand my mother the pants with the "cut" pocket and as she was reaching for them a "bomb" dropped.

"Frank, that couldn't have happened when these were made. You wore them yesterday and carried your change and keys in them. When you came home you took your change and keys out of that pocket and put them on your dresser."

It was so quiet. The stillness amongest us was devastating. The bomb was slowly descending and we were going to be under it when it exploded.

My mother looked at all of us and declared she was going to get to the bottom of this. Yep, she was on her horse and coming after us.

Everyone of you come home right after school, she bellowed. Each one of you will tell us exactly what is going on here and why.

School was a drudgery. Guilt and fear hung on me all day. I couldn't concentrate. What was going to be our punishment? The clock moved too fast and before I knew it I was trudging down our street towards home. My mother and my father were sitting on the back steps waiting. I hung my head so that I did not have to look at them.

"Ruth Carol," my father said, "I want you to tell me in your own words what happened to my keys." I slowly told him how it happened. I did not look at my mother. I was glad my father asked the question. His softer personality made it easier to respond. When I was through my mother said that it agreed with my younger brothers and sister's stories.

What! I was not going to be punished. I died a thousand deaths all day long and I was not going to be punished. You mean I didn't have to go through all of this.

"The older children are responsible and we will deal with them", my father said.

Right! that's right. I should have figured it out. I wasn't old enough to make that decision. They were suppose to take care of us while my folks were gone. They sure gave us a fun time while they took care of us though.

For days we looked for Pal to pass the keys. He never did and he never got sick. We put him to sleep years later.

Diary, in all of these years I never knew what punishment my parents gave to my older brothers and sisters. I was so relieved to be out from under any punishment I never thought about what happened to them. I never heard any fighting or yelling over this wonderful infraction.

I have been off Norvasc now, for about three weeks. I am glad I am off of it. I am feeling soooo much better. I have been up and down stairs all week catching up on laundry. I am back to my normal gait going up and down the stairs. No heavy feeling in my legs, arms are able to hold a hair dryer again. Do I feel like me again? Yes, Yes, Yes!

I can hardly wait for the fall weather and try again to see if I can get back to walking in the cool fresh air. Right now I am confined to home and my treadmill.

My CPAP is working great, however because I have to have the head piece on tight they are allowing me to order a new Mask. I have been looking at the NASAL AIRE by the original makers INNOMED (there is a copy cat one out there). In talking to the Rep she informed me that it would forcefully blow a lot of air into my sinus cavity. My setting is at eleven on my machine. I have a post out on sleepnet.com and am anxious to find out if anyone else is using it and if they are having success. I want to see also if they feel that is too much air and what will it do to my sinus cavity. I believe she was trying to warn me, but I will talk further with them also.

I have felt extremely rested, I felt rested before, but since adjusting and readjusting my CPAP headgear I have noticed another big difference. What a difference it makes to be so rested. I think I also have caught up on my sleep debt.

To think that all of the years that I had been asked if I snore and I said, "yes" that no one felt the need for me to have a sleep test. I only snored. Did not fall asleep in the day, when reading a book etc. I had none of the usual criteria to spell "alarm." It had only been in the last few months, 4 times to be exact, that I awoke out of a sound sleep gasping for breath. The 4th time I had to jump out of bed to catch my breath.

When I go into my cardo I will be making an appt. to have all my regular testing done. It is that time of year for it. The 6 min walk, echo, etc. I believe my PH pressure will be down if not back to normal. I hope I am not dreaming. I am concerned about my right heart and left heart outcome more than the PH right now.

The fluid retention has gone down quite a bit. In fact so much so that it does not bother me to stand and iron. Very little ankle swelling. What a "little rascal" that Norvasc pill was. I was doing great for awhile on it and then "bingo". I guess that is the story of this illness and it's medicines.

My BP has been down in such good numbers. Even when I think it's up and I take it I am surprised that it is down. This has not happened in the all of the years since I first caught pneumonia. The last time I took it I couldn't help, but have tears of joy.

That is what I intend to do; join the Computer Techies Club. I have fiddled around with little knowledge on how to fix the troublesome spots on my computer. I have found a site on the web that perhaps will get me back on track.I emailed them and got a response right away as how to fix my problem. So, I am going to take a good hard stab at it. The computer techs are to costly for this old gal.

"You can't teach an old dog new tricks?" Well, we'll see about that. I say, "the only reason you can't teach an old dog new tricks is because he can't make himself move out of his familiar territory."

Well, diary they also say,"Pride doth go before a fall." I think I better just see if I can do what they say to fix it. And if I can't, well, I can always know that I tried.

I saw my cardio today. I am scheduled for the complete work up. Echo, treadmill, nuclear scan, etc.on the 18th of Sept. He increased my Nadolol to 120 mgs from 80 mgs. He wants the top number of my BP to be at 130 or under. It had been until the last few days it was hitting at 140 to 148.

My PCP put me on Lipitor; the cardio took me off of Lipitor and Norvasc; my endocrinologist put me back on Lipitor.

I can remember way back when you had one doctor who did everything and when he got into trouble he called in the specialist.

Take for instance, when I was pregnant with my second daughter. I had severe water retention and high blood pressure. I could hardly walk or move and I looked like one of those women who carry six to seven babies. First they thought I was carrying twins; with their two heads together it was decided no. I was put on bed rest and had to move to my in laws because they did not have a two story home and I needed someone to watch me all day. The regular doc and the obgyn called and talked to one another. No paper work had to be sent to the obgyn. I did not have to say, "Well, dr. so and so said; or do you have the paper work from dr. so and so as to why he is doing what he is doing?" None of that went on. They called each other in "my behalf."

When I delivered this "tiny little girl of 6 lbs.", the obgyn came in and took my hand, rubbed it and said,"you poor thing;it was all water.I am sorry we indicated to you that you were going to have a big baby due to overeating. I am sorry we put you through that stress." Diary, he was sincerely sorry. They both were and I could not fault them for that. I was a rare one. How could they know?

Today I told the cardio's nurse that I always feel caught in the middle with all of the different drs. I have to go to. It's not personal enough anymore.

I emailed one caregiver today and said this to her;"Your diary entry made me think of the movie,

"The Doctor" with William Hurt and Elizabeth Perkins. It should be a required course for med students.

Perhaps we as patients and caregivers should give them a copy to remind them of who we are.

Another day!

I have been extremely busy the past couple of weeks. Dr. visits, CPAP visits, and everyday living encounters.

I have Ostrich legs now and the round body to go with them. Since being off Norvasc my legs, feet, and ankles are me again. At one time I felt proportioned; now it is quite eveident that the roundness has to go. Hopefully my new diet and getting back to walking will accomplish this. Lee and I will be checking in to aerobic swim classes and we have bought a very good treadmill. Now to do it all and keep at it is the test.

I have been attending Diabetic Classes and my last one will be the 11th of Sept. I had my one on one yesterday with the Nurse Nutritionist. My not being able to function since Nov. has really put me in a bind weight wise. My walking has always kept my weight at bay and now that I feel I am able to get back on track I can hope for some changes.

The nurse did not have an easy time with my nutrition program. My lack of being able to eat particular foods was a stumbling block for her. What diabetics can eat I cannot. My tolerance for foods containing preservatives in the last five years has changed. All of my life I have had to monitor what I could eat. As a child I could not tolerate Koolaid, popsicles, gravy, pancakes, syrup, waffles, to name a few. I could however eat french toast, but with the tiniest amount of syrup. It was no big deal to me; I just knew I did not like certain foods and they did not like me. It has been an almost unconcious act over the years to avoid those foods I knew to be my "enemy."

The last few years though it has become very noticeable that I am tolerating less. And more noticeable since my daughter and granddaughter have Carcinoid and Carcinoid Syndrome. When you have Carcinoid Syndrome you cannot tolerate a lot of foods. Some people vomit, I use to, but now I just don't feel good when I eat something that I cannot tolerate. It does not hinder my life though, as it does my granddaughter.

I have had to give up my wonderful decaff coffee flavored with Nestle Coffee Mate. I have not acquired the taste for black coffee and so I miss looking forward to sitting on my deck and slowly drinking my hot flavored decaff. When having a bowl of cereal my favorites were the Post Cereals especially Cranberry Almond Crunch. That delight has been out of my life for the last 2 years. Lee and I enjoyed good Chinese food. He now goes on his lunch hour when he has a craving for it.

Some of the restaurants have started using the prepackaged garden salad mix. The first time I had it I couldn't eat it. That old feeling in my stomach came after a few bites. It took me awhile to figure out what was happening because I could eat a garden salad at home and so why couldn't I eat it in the restaurant? My daughter clued me in. I never thought of it being prepackaged with preservatives.

Nutra sweet, msg, Aspartane, play havoc in my life. I have quit ordering regular cokes when I have one in a restaurant. Invariably I end up with a Diet drink. The first time it happened to me I took a large gulp because I was thirsty. After I swallowed I knew by the after taste I was given a diet drink. I thought that one swallow would not hurt me, but by the end of my lunch with my friend I did not feel well enough to go on with our day. I now drink and enjoy Luzianne decaff ice tea, but I still miss my coffee.

My daughter wants me to be tested for Medullary Thyroid Carcinoma. Mainly because I have a benign nodule on my thyroid. This carcinoma and carcinoid syndrome have the same symptoms. I do not know which one mimics the other.

I left a note for the nurse to give to my endocrinologist about doing this testing.

"Health nuts are going to feel stupid one day;lying in the hospital dying of nothing."

I have been trying to absorb all the information I have received from my Diabetic classes.

It became clearer to me when emailing a friend about what the Nurse Nutritionist told me. Balance is the key factor to all of this. Down through the years the pendulum has swung one way or another in regards to eating. A balance of carbs, protein, fat, starch, etc. is needed. If we swing too far one way our bodies pay the price. I was going to do the Atkins diet, but read somewhere that it creates a high acid level which is not good for anyone with a lung disease. Atkins has test strips to keep check on your acid level. Again I thought of the imbalance of diets. This has always bothered me with fad diets. Ten years down the road we will more than likely hear the horror stories of that diet.

I am not a breakfast eater. I have never been able to eat breakfast. 11 a.m. or 12 noon is when I eat. I considered it my breakfast and lunch. Sometime in the late afternoon if I thought about it I would eat a piece of cheese or two to hold me to dinner. 6-8 was dinner time. We hardly ever think of having a snack before bed. So why was I gaining weight?

I had always maintained the same weight. When each of my children were born I always got back down to my normal weight. Sometimes it took me longer, but I did it and it stayed off. I have always been a physically active person. Before I stopped walking last Nov. I was walking 12 miles a week. When I was younger I never calculated how far I walked. I just loved walking. As a family we rode bikes on the bike trail. I mowed our present yard every week for years. It takes 3 hours to mow it and that is with very few breaks of 5-10 mins. which might bring it down to 2 1/2 hours.

Then it all stopped. The years of improper eating, illness, and no exercise caught up with me.

I was discouraged in the beginning with the classes. The hardest part for me to overcome was the thought of 4-5 meals a day. I don't mind eating the two meals. I love the fellowship a meal brings. I like food; I just don't like sitting down to eat all of the time. We very seldom snacked during the day.

I came from a large family whose budget did not allow a lot of food on the table except at holidays and Sunday meal. Eating was not a priority in our lives. I don't remember ever having a snack in between meals. Often times you played or did work to keep your mind off of hunger. So I learned to work or play through my hunger pangs. Thus today I would choose work or play over food.

When Lee and I first married it was hard for me to fix lunch. It was a nusiance in my life and a big interruption from achieving my goals for the day.

The Nurse Nutritionist has started me with 3 meals a day which is a relief to me. I think I might have to set an alarm clock at first. There is nothing within me to trigger when to eat. I can go a whole day doing projects and before I know it, it's dinner time

The nurse told me, "When I go all night from dinner and no snack and wait until 11 a.m. or noon, my metabolism has no signals to tell it to burn." She turned the "light bulb" on in that one sentence. I knew it, but I didn't.

I actually went into "metabolism shut down" the way I figure it. In my mind I see two avenues for metabolism. One for eating and one for physcial. As long as I was walking I kept the physical burning metabolism going and it kept working for both and kept my weight problem at bay even though I was eating wrong. When I had to stop walking the malfunctioned eating metabolism showed it's true colors. Neither one were working now. Hence, the unwanted weight. I had nothing left to burn. My body did not receive any signals.

Smaller portions, 3 times a day, with the right amount of carbs, starches, proteins in each meal. This will get the metabolism burning. One of the keys to it is not to dump all of your carbs, etc. into one or two meals like I was doing. All of it has to be stretched out through the day so that the burning can burn up the one meal before you eat the next. It is so simple and yet so hard.

I am going to have to plan my meals for awhile until I get use to this new way of eating. One day it will seem normal and I will be able to flow with it.

Let the "burning begin." I can walk again now and I have a diet plan that will work for me.

I spoke with my older sister today; the one who cut the holes in my dad's slack pocket to hide the fact that the dog swallowed the car keys after she and my brother took the car joy riding with all of us.

She's dying diary. I guess she feels it is time. She wants no more help unless all of us as siblings can convince her otherwise. I tried, but she stopped me. She didn't want to talk about it. Her mind is made up. She has had a rough go of it all of her life. I know she is tired of fighting. I can hear it in her voice. Why fight when you know that there is something more wonderful waiting for you in the end. Christ has been her life for a long time. Her rock during the hard times. She has raised 2 children on her own. She had to quit her job this summer. She had to have an operation on her ankle and things have been down hill since for her. The ankle is healed. I believe she has PH along with her heart problems.

None of us know the day or the hour when we will pass from this earthly life to the next. As Christians we know that we are just passing through a strange land and that our home is with Christ.

My older brother found a music sheet of the Dolly Sisters. On the front of the sheet are Betty Grable,June Haver etc. He sent it to my sister Lorraine, who in turn gave my older sister Fran and myself a copy. We have had some good laughs over the wonderful memory of this movie. I wasn't old enough to see it, but I remember the details of my two older sisters going to this movie. They were allowed to go on the bus uptown to see the movie. However, when it got dark my two sisters did not come home. My parents became gravely concerned and put the 6 of us in the car with them and drove uptown to the theatre. It was a day and age not to be concerned about the where abouts of your children. However, this time they were. None of us talked as we listened to our parents frantically seaching for why they did not return. This had never happened before.

I can still see us parked in front of the theater. My older brother jumped out of the car and said, "I will go look inside to see if I can find them." Minutes seemed like hours. My father started to open the car door, just then my brother and two sisters appeared before us. My dad continued to get out of the car. I am sure he looked like a giant to them. He was never one to punish and always tried to get to the bottom of things quietly. There they stood the three of them. My brother had a smirk on his face. The only reason he jumped out of the car to get them was so that he could torment them about the punishment they were going to get. He gleefully lectured them all the way out of the theater that, "they were in big trouble this time." My mother was very upset. You could tell by her voice.

They didn't know that it was evening. They just wanted to see the movie one more time. I think they saw it three times. They were enamored with it. My sister Lorraine was enthralled with the music; she always sings and use to play the drums. My sister Fran was overcome with the glamor of the costumes and jewelry. To this day she looks like a million bucks even in her grubbies.

My sister has made her decision. She will proceed with the meds she is on, but no more looking for answers. I still think she has PH, but she does not care one way or the other. Only time will tell what the outcome is going to be. She is weak and tired and no longer cares. "What will be, will be", she says. She won't give anyone permission for life saving procedures.

Even though she has made this decision who knows how long one's life is going to be. She could live days, weeks, months.

My diet is going great. Two and a half weeks into it and I have lost some not a lot, but some. I guess it is what I am suppose to lose according to everything I read. Two pounds a week. I have lost five. I want to go faster at it, but there is always a price to pay when you don't do it slowly.

I go in for my echo, and treadmill test. I feel things are going to look good. I would be surprised it they didn't.

Finally have the CPAP down with a new mask. The old mask was good, but I like the new one better.

In some ways I am feeling more like myself. More energy than I have had in over a year.

The old fear button has kicked in and I am dreading tomorrows treadmill test. The last couple of days whenever I get to going and doing I am SOB.

I had this one other time while standing and doing dishes. I had to keep sitting down. It lasted that one evening and I have not experienced anything since.

The last two days though I have been SOB. I know it is because I have not exercised like I use to since last Nov. This is going to affect my test tomorrow. The last time I was tested I was walking, mowing yard, pulling weeds, planting, doing fall house cleaning, painting, etc. You name it diary, I was doing it. Lately all I have been doing is trying to survive just getting through a day. All this due to Norvasc. I am just barely climbing out of the hole from having been on that "ugly pill" and now I am being tested. I tried going at it on my treadmill and it's a no go to do any thing other than my regular walking.

I was not as heavy then either. I have only lost 7 lbs. the last two weeks, so that is not going to benefit me. Diary, all my life I was only 150 lbs. for my height and frame. I should have been 138, but never did get to that point and was never worried about it because I was always the same even after the children were born. My clothes size never changed; it all remained the same for so long. Then one year, after I first became ill, I put on 50 lbs. I couldn't get it off, but now I understand why according to the nutritionist and dietian. I held to that same weight for 7 years thinking that would be my lot in life. Because I carry my weight so well, nurses when weighing me would be surprised. My friend Frances envied me. She made me get on the scale one day because she thought I was just trying to be kind to her and overstating what I weighed.

Since last November I have put on another 38 lbs. Woe is me diary. All due to faulty eating and thinking. Can you beat that. I thought because I was only eating two meals a day I would not gain, but gain I did.

I am struggling to maintain a 1200 calorie diet. I can barely hit a 1,000 calories in one day. Lee has to help me. I think I am eating a lot. It seems like it to me, but when I add up the calories and carbs the calories are way down. One evening I only made it to 778 in calories and I needed 10 more carbs which that was not hard to meet. The carbs are the easiest.

I found out from reading an article by Dr. Neil F. Neimark M. D. that one should not even go below 1000 calories a day. He says,

No one should eat less than 1000 calories a day without supervision. The body shuts down when the caloric intake is too low. When caloric intake is below 1000 calories a day, your body goes into 'starvation mode' and tries to preserve all it's bodily energy stores and your BMR decreases significantly, impeding weight loss. So be careful! (BMR is Basal Metabolic Rate is the number of calories you burn in a 24 hr. period.)

I wonder now if I was eating less than a 1000 calories a day. I am fixing the same meals I have always fixed, but eating in between which I find still is a challenge to me. I want to ignore the hunger pangs. A habit that is hard to kick. However, I am hungry and I thought I would need an alarm to tell me. The metabolism is "lit."

It certainly was not as good as the last time on the treadmill. The last time I walked and did the inclines for 15 mins; no SOB and no chest pain. Six mins and I was off and sitting down. A few seconds after sitting down the chest pain did not occur in the front, but towards the inside back of me. Not real painful, but enough to let me know it happened. I became SOB 5 mins. into the walk. Well, I will have to wait and see what my results will be after being scanned, walked and echoed in that 4 hour checkout.

I am having trouble locating my PCP. He was to have been at this new medical center in September. He is not; I was informed that the plans did not work out. They did not know where he went. I am determined to call every clinic center in the area this week to locate his where abouts. What a bummer!!!! I was hoping to have seen him this month. I was also hoping I could locate a new heart doc within his new group.

Another Day, was when I would tell my children that I would fill them in on a particular subject that I felt they did not need to know all of the particulars of....sometimes that day never came.

In the last few months so many with Ph have passed away. One cannot help but contemplate the meaning of death during times like these. I have often reflected on the deaths of those I have known. Some stand out more than others because I experienced unusual circumstances surrounding their passing from this world into the next.

Little six year old Tony was one of them. His death was the most unusual of all for me.

I had taken a part time job with the school system monitoring the breakfast and lunch programs at one of the nearby schools in our neighborhood. It was a fun job and very rewarding. Children themselves are a reward. So, my duties consisted of monitoring the play ground during the morning as students began to arrive for the day. Those who did not have breakfast were to be escorted into the building and those remaining outside I would continue to monitor.

Tony was very small for his age. He was a lovable child and I did not mind his hanging onto my hand. He would run and grab my hand the minute he was on the playground and did not let go until it was time to begin the school day. This went on for weeks and I did not discourage it. I felt he needed this attention, so I gave it to him. I did not ignore the other children, though I soon learned the policy was not to let one child consume any part of your attention. The Vice Principal wanted me to encourage Tony to play with the other children. I tried unsuccessfully. The Vice Principal was unsuccessful. Tony would not listen. He would cry and cry.

The Vice Principal and I came to the conclusion that the other children were not complaining and that Tony obviously needed this bit of attention. It was agreed upon by the Vice Principal, myself, and Tony that, "if one of the other children complained he was to let go of my hand and let them have a turn. " They never complained, so Tony and I would walk around the playground with him holding my hand. At times I had the freedom to question him.

"Do you have brothers and sisters that pick on you?" Coming from a large family I felt this was a possibility.

I stopped questionong him and we walked hand in hand all through the fall months and the beginning of the winter months. Christmas vacation was fast appproaching and the children were getting excited.

It was one of those mornings when the snow was softly flowing down from the sky. The children and I were catching the flakes with our tongues. Everyone was enjoying the new fallen snow. Everything was white, clean and beautiful. I was surrounded by children; then they all darted off making their invidual track marks in the new fallen snow, leaving me with Tony.

"Why don't you go running with the other children and make your track marks in the snow?"

The school rules and policies came to my mind, but I dismissed them. So fire me I thought. This child wants an answer and I am going to give him one.

"Yes", he responded. "I go to the church up there"; he pointed to the church I attended. "I go on the bus every Sunday."

So, this is why he hung onto me all of these weeks. Somehow the message was not becoming clear to him in Sunday School.

I questioned him about what sin was. He knew. He understood doing wrong. He understood that Jesus loved him. What he didn't know was, "if he was going to heaven when he died."

And so we walked hand in hand talking about heaven. John 3:16 became a reality to him in those moments. What heaven looked like and the mansion Jesus prepared for him. The gold streets glistening just like the new fallen snow did from the sun rays. I explained how when you die it is like going to sleep. You don't even know when you have gone to sleep and the next thing you know it is morning. That is what it is like. One day you are on earth; the next you are in heaven. You don't feel anything; it just happens. One moment it is night; the next morning.

He was happy; I was happy. All of these weeks and that's what was bothering him. He ran off to play.

Christmas came and went, but not without sorrow. Our new neighbors and close friends' five year old son Chris was killed by a car when crossing the street. It was devastating.

The only solace I had was the fact that I firmly believed that he was with the Lord. How do people live without that solace I wondered as I walked up the street he was killed on to go back to my monitoring job?

I was still grieving over Chris when we went home for the holidays. I had not read the news or paid attention to it.

Tony died at the hands of two of his friends. They fought over Tony's bike and they took it away from him. They pushed Tony and he fell hitting his head on a rock. He landed face down in a small pond of water. One day you are on earth; the next day you are in heaven

Scripture says we will not know the day or hour; it does not say that we cannot know that it is near. Tony's young heart and mind knew it was near and he wanted to be reassured of his destiny.

No matter how hard I try, diary, not to be influenced by my surroundings, I am. If the clouds are gray I am a wreck. My head feels like it is filled with air pockets and I can't think. Give me dark rainy days and I will curl up on my love seat with a book and soft music. The rain mesmerizes me and I find I am looking outside my sliding glass doors more than I am reading. The blowing wind in the trees and rain has such a calming effect on my health. I doze and read. I doze and look outside at all of the beauty that is surrounding me. Blue skies and sun add further to the healing of my mind and body. So much in life affects our health. The way we eat, sleep, walk, talk.

I am not one who is into holistic living, but I do admit by just observing what affects me that there has to be something to that theory.

Who would think that a bird could add such joy to my life. Having Histoplasmosis I am very leary of these fine feathered creatures. Every where in our yard you can see a variety of birds. I have often thought that I would like one of those windows that serve as a bird aviary. Without going outside I could lift up the pane of glass put my seed inside the aviary close the pane and have a natural bird sanctuary. But then I think about my lung problems and I do not order it.

Lee spotted this beautiful little bird on our front lawn just before I was to take him to work. Before we left I went out to investigate this small creature walking around on our lawn as if he belonged there. He was a cockatoo; that much I knew by looking at him. I would not have known this if it had not been for my daughter having had a cockateil. He was so beautiful. All white with a lemon colored tail and crown and peach colored cheeks. I started talking to him.

Suddenly he flew toward me, I jumped back by the tree I was standing in front of. I did not want him to fly on me because I didn't know if he was ill or not. He managed to cling to the tree and climbed up on a branch. I told him to stay there and I would help him after I took Lee to work.

I came back and he was still there. I had to go shopping because our daughter and family were coming for the weekend. I told him again to stay there and I would get help for him. How, I did not know.

Three hours had gone by and there he was still perched on the branch. I talked to him; he talked back. Thoughts about keeping him ran through my mind. I was so touched by his intimacy. Well, I certainly could not keep him. He belonged to somebody. It would mean fliers and perhaps a newspaper add.

I went over to Joe and Donna's to see if they had a cage. Donna is an avid garage sale shopper. She did not have one. We stood on her porch trying to figure out how to get the bird down. She was in no better condition than I was to help the poor thing. As we pondered my new found feathered friends' fate, Joe drove up. He had finished work early.

The rescue was successful. As Joe climbed the ladder the friendly little creature walked up and down Joe's arm. Chirping and whistling. He would chirp in Joe's ear and then kiss him. He walked around Joe's shoulders and chest. Kissing Joe, chirping, and whistling. It was a delight to see. What to do next? Because of my lung problems Joe and Donna took him in. Joe went to a house in our culdasac who has birds. No one was home. By Saturday they found the owner.

Saturday Donna called and talked to her mother. In their conversation she mentioned the bird. Her mother said she thought she read about the bird in the newspaper the other day. Sure enough. It was our new found feathered friends' parents'. Rio, was fifteen miles from home. He escaped when his young parents' were taking him to the vet. They cried and cried since his disappearance. Rio was their baby. They had him since he was eleven weeks old and he was now one and a half years. He had been missing since Wenesday morning. Lee found him on Friday afternoon and he went back home on Saturday afternoon.

It was a beautiful blue sky, sunny day. Rio will be a part of that day. His intimate demeanor affected the nurturing side of me. PH being forgotten by blue skies and a cockatoo.

My busy life has put my diet on hold. Since the beginning of last week I have not touched it. My old habits have returned. When I get up in the morning I make the bed or it never gets made. I tidy up the other rooms; if I don't, I pay the consequences. I might put in a laundry load or two check my email;answer email. I might have a phone call during this time and before I know it, it is 11a.m. and time for a bowl of cereal. All of this is before I shower.

This past week my daughter was here helping us ready the yard for fall. Meals were a no plan item. Yard work and ironing were the musts items to get caught up. By Thursday she and the grandchildren left; my other daughter and her family arrived Friday evening. When the children are home I try to cook their favorites from childhood. We also dine out one night while they are visiting. Saturday morning it was hash brown omelete, topped with bacon. Fruit and toast added to the feast. Late Saturday afternoon we tried a new Italian restaurant. It was a college game night. The restaurant was a sea of orange dress for all. Waiters, waitresses and patrons glowed of orange. Spirits were high and we reveled in it. The game was later in the evening and no one was disappointed. Victory again. Sunday our littlest granddaughter made blueberry muffins with me. We had cereal with fresh blueberries and raspberries and our muffins. Both mornings we were able to dine out on the deck.

Somehow a healthy diet was just to difficult to achieve. I ended up with a healthy mind though. The laughter and good times was worth hanging up the carbs and calories. I will pick them up again this week.

MEDICAL ISSUES
Medical Professionals:
	Scientific Literature
Patients and Caregivers:
	PH or PAH?
	Diagnostic Process
	Treatment of PAH
	Specialists & Treatment Centers
	PAH Glossary
	CA PH Forum 2005 Review and Presentations
	Clinical Trials
	PPH Article - Sean Gaine & Lewis Rubin
	Nomenclature & Classification of PAH
	Edema
	Diuretics
	Clinical Trials Article
	Legal Issues
	Links
	Books

COPING WITH PAH
	Support Groups
	PAH Diaries
	Photo Album
	PAH Talk
	Tips & Tricks
	Tidbits
	Travel With Oxygen
	Creative Corner
	Caregiver Support
	Links
	Books