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Monday, January 22, 2007
The clock ticks much too loudly...
Dear Diary, (I like this... it's so impersonal, yet VERY personal) I have noticed at night that the clock ticks a lot louder. I swear my hearing is diminishing, but I can really hear that clock. Last night as I lay in bed after my second hot shower (it sometimes helps the leg pain) I realized that I count along with the clock... the clock that is measuring the passing of my life. I don't know why I do this... it's not as if there is a tally sheet somewhere to review at a later time. I suppose I have turned this ritual into a "counting sheep" exercise. Who knows? I have stopped questioning my actions since I went insane a few years back. I told my Aunt Irene (who is 87 and in great health!) that I had not visited her much because frankly (with all my stress), I had gone insane. She said, "I thought you had already BEEN insane - way back when you married that musician!" I laughed and explained, "Well, that IS true, Aunt Irene. I DID go insane, but I liked it so well, I bought a return trip ticket." I will post some pictures when I have more energy!

Monday, January 22, 2007
Let me introduce myself...
Dear Diary, Well, I forgot to introduce myself in my initial posting. I am Jo Williams. I am 54 years old and I live in Cowpens, South Carolina. I'm so Southern that I actual reside in the very same farmhouse my GREATgrandmother built in the late 1800's. I was diagnosed with PPH in December 2005. Prior to that, I was stricken with Relapsing Polychondritis and Tracheomalcia. (The doctor thinks there is no connection to PPH.) I got this disease (PPH) because being thin was going to make me healthier. At the time I had no health problems - just obesity... so I took the Phen/Fen. What a deadly choice! :( Guess what? ... I'm still obese, but NOW I have something to REALLY worry about. (Looking good seems less important than it used to.) I have a husband of 10 years, a biological daughter who is 32 and a biological granddaughter (14.) My first daughter was killed in a car crash 20 years ago. Her father managed to drink himself to death following her death. I remarried in 1997. My stepdaughter was murdered in June 2006. My living daughter has Fibromyalgia and an inoperable pituitary tumor. Her only child has a partial intestine because she had to have 9 feet removed at Duke. (Due to a double bowel obstruction.) Last December, my husband (50) had his first heart attack, and he is the picture of health. (You can never tell.) Our family knows tragedy and illness all too well. Do you understand WHY I cannot tell them what is happening to me? I put on a real good front. Does anyone else do this? I'm glad I found you. I needed to whine... and I promise that will not become a habit with me. Thank you for your ear. Jo :)

Tuesday, January 23, 2007
A new day...
Dear Diary, The weather is nice here today. I would like to be outdoors pretending to clean up the yard... uh, field. I don't really have a lawn... we just kinda cut back some brush, built some new steps, propped up the old mailbox and called this old farmhouse "home." Living here is... "interesting." I swear, if the temperature drops to 31.5, SOMETHING freezes that requires an engineering degree to repair! Luckily, my husband is an engineer. Unluckily, he has no passion for placing a bandaid on a leaking dam. (That's what it's like living in a 125 year old house.) No matter what we repair, we can be sure that something else is breaking simutaneously. My question: Am I the only victim of PH who is THIS exhausted??? Is this normal??? Sometimes I contemplate changing the sheets later than walking to the bathroom. I actually have never gone through with it because I hate being wet. (HaHaHa) Oh... and does anyone else have episodes of sleep paralysis... it's where you are awake, but you can't open your eyes or move your limbs or even speak. (This might be related to my narcolepsy - but it did not develop until the PH got worse.) Thanks guys... Jo Williams :)

Saturday, February 03, 2007
Depression... Not tropical... Just the regular kind.
Dear Diary, <~~~ Personification soon to come! I'm thinking of a name to call my diary. In my teen years, my diary was called Trixie. (After Trixie Belton - a character with her own series of books.) My uppity cousin read the Nancy Drew series. They were more expensive and had a greater following, but that's another story... On February 1, we had an ice storm. It was not bad. The 1 or 2 inch snowfall was really very pretty and the ice melted quickly. HOWEVER... I am living in this ancient farmhouse. It doesn't have remarkable upgrades. A lot of work needs to be done to make this place comfortable. Have you ever got out of bed, looked around, realized that no matter what you did that it really wouldn't be that much better? Then you simply went back to bed and pulled the covers over your head... Well, color me hopeless. I am unable to perfrom miraculous acts. Hey... don't laugh. I used to pull some serious stunts when I needed to! Being a procrastinator, I would wait until the day before a party, then swing into action. Somehow or the other, I was able to prepare food for 20, fashion a centerpiece out of old coffee cans and crepe paper, locate/wash/display china, silver, and crystal, and have candles lit and music playing when the guests arrived. Fast forward: February 3, 2007 Today I slept (or at least stayed in bed) until after noon. When I managed to get out of bed, I got tired walking the 15 steps to the bathroom. I considered brushing my teeth, but decided to wait. Otis (my blind cat) alerted me to the fact that he had no one to play with by clawing me until I bled. The girl canines were out in the compound. Apparently my husband had put them out before going to bed this AM when he got home. Murray, our smallest dog was sleeping in a chair. Otis came from the bathroom and tried to find Murray, but with no success. The kitchen is a mess. Silverware is dirty and in the sink. The doggie water bowl is empty and the outside cats are screaming for food. Hubby is sleeping soundly in the "rock star" room - so named because there are no windows in there and it is very dark all the time. I kicked a couple of dishes over to the pet dining area. I considered sweeping the kitchen, but sat in the recliner instead. I surveyed the surroundings. Everything in this house is a mess. If it isn't broken, it's dirty... AND some things are broken AND dirty. I am in no mood to wash silverware before I prepare breakfast for one. I filled the inside pet dishes with food and water. I slipped and slid on the icy deck to feed and water the outside pets. Then I played "Word-o" my favorite computer game. Still no food. Still no juice. Tested blood sugar. I really should feed and water myself. F*** it... I'm going back to bed. Jo :(

Tuesday, February 06, 2007
Phen-Fen and PPH Court Cases
Dear Diary, <~~~ Will someone think of a more personal name?? It really upsets me every time I think about how I ended up with primary pulmonary hypertension... You see, it was ten years ago and I was in for an office visit with my pulmonologist. Although my asthma was well controlled and I felt just great, he approached the subject of weight loss with me. "Now that you are off steroids after 12 years of continued use, perhaps it is the time for you to think about losing some weight. It will improve your overall health, and will give you more physical endurance." There was nothing wrong with my health except asthma and occasionally a case of acute bronchitis. I told the doctor that I would try to follow any advice he gave me because he had indeed saved my life by helping to make me steroid free. (I honestly felt like he had kept me from dying from the side effects of prednisone.) So, I took my prescription for Phen-Fen and went merrily on my way. Over the course of the next few years, I developed sleep apnea, narcolepsy, restless leg syndrome, tracheomalacia, relapsing polychondritis, diabetes secondary to an IV antibiotic, a bone tumor of the lower leg, and of course - PPH. I lost weight. I WAS steriod free when I began my weight loss plan. I could exercise. I controlled my appetite with drugs. I had energy and except for some tachycardia that was unexplained at the time, my health was the best it had been in years. Temporarily. Things began to unravel. First, I developed leg pains. I stepped on a plastic razor and though the wound was small, I developed osteomyelitis. I continually had bronchitis. I started developing edema in both legs. My breathing was simply awful. I had to begin the steroids again. Large amounts of steroids. When I asked the doctor if the diet drugs caused any of my problems, he emphatically said, "No." I stopped taking the pills anyway. I had swallowed the Phen-Fen every day for a little over three months. I don't even recall how much weight I lost. I didn't care, because I was sick. For the next few years, I had strange health problems. I was sick but no one knew why. I was off and on steroids. I took a ton of drugs in an attempt to find something to help my deteriorating condition. Anything the specialists wanted me to try, I did so willingly. I was desperate. Then came the echos. And the lung scans. And the heart cath. Then came the news. You would think that I would be called in with my husband to discuss my diagnosis and treatment options. That did not happen. I was in the doctor's office. The echo had been done a month earlier. I thought it was fine since I had heard nothing to the contrary. The pulmonologist was getting ready to send me to have my legs wrapped to control the edema when his assistant pointed to my chart and said, "Doctor, have you seen this echo report?" Well, he glanced at it and said, "I'm sorry to tell you this, but you have pulmonary hypertension. Don't worry though, because you can take Viagra and it will help you." I was alone. Because I have a medical background and because I had been proactive in trying to keep myself from dying the last decade, I KNEW I was in trouble. My husband waited in the truck. I got in the truck and handed him the check out sheet. I said, "I have pulmonary hypertension." He said, "No way." We both cried. I did not have a follow-up appointment. We sat in the parking lot trying to think. A few days later I got a call from a cardiologist who wanted to schedule me for a right sided cath. I declined his offer because it was the week of Thanksgiving. So, in February of last year, I had the cath. No turning back. I knew for sure. While reading online, I found a quote from the CEO of American Home Products who flooded the market with Phen-Fen while KNOWING it killed people or caused severe damage to otherwise healthy adults. Still, they lied to the FDA and to physicians all over the country about the safety of this miracle diet drug. I don't remember his exact words, but the man who made a billion dollars from Phen-Fen said something like, "So we killed a few fat people. All in all, it was a safe drug." I have an attorney. The settlements are "substantial" if Phen-Fen caused your PPH. However, very few people live to see the money. Oh, I love this condition too... When you do receive the settlement, the amount cannot be disclosed. I hate that. I wish that all the damaged people could go to the press and announce, "That pompous CEO had to pay me 2.5 million bucks!" But then, I'm sure that whatever they are paying, it is a drop in the bucket compared to the money the drug company continues to make. I know this was long. But I want to know... Does anyone else have a case pending against American Home Products? (now it is Wyeth) They had a name change following their little Phen-Fen fiasco! If you know anything about the time line of settlements, please let me know. Thank you. Jo Williams :)

Friday, February 16, 2007
The Albino Porch Possum
Dear Diary, Valentine's Day. I told Les to forget about it. He works long hours and is interested only in coming home and falling into bed. When I got up for the morning chores, there was one perfect rose on the bar. It was a beautiful shade of pink. There was a card from Les, the dogs, and Blind Otis. "Blind Otis" is our special indoor cat. We have farm cats, attic cats, and Otis. Our granddaughter named Otis when he was a few weeks old. I knew he had no vision because his pupils were dilated and nonreactive. We tried to let Otis live outside, but it became clear that the other cats were bullies and Otis was not thriving as he should. Otis lived in the bathroom for a couple of weeks. He loved it instantly. He felt safe. He became quite the attack cat at night when we interrupted his sleep for potty privileges. When Otis got large enough, we introduced him to our 125 pound wolf, Valley. She is so maternal. It took her awhile to realize it, but now she knows that Otis is visually impaired and she plays games with him that he can understand. She brings a plastic grocery bag to him. Then she steps on it, making it rattle. She drags the bag around for Otis to follow. She also knows that Otis is more fragile than wolf cubs. She has learned to reposition him with her muzzle so as not to injure him. They are something to watch. Valley is in love with little Blind Otis. The three dogs like Otis... but they basically tolerate him. It's Valley who thinks he is grand. So, there I was... looking out on the front porch to see if the farm cats had a good supply of dry food and warm water. (Oh, they have a heated house as well.) For the last three years, our farmhouse has become preferred lodging for a passle of possums. I'm not sure they are in the same family, but they visit with great regularity. We have had grey possums, black possums, brownish looking possums, but what I saw on the porch was not normal. Or at least not average as far as our possums go. We are now the proud keepers of an albino possum! I understand that in the opossum world, albinoes are not that uncommon, but I had never seen one. It was remarkable. He has the pinkest nose and feet. His eyes are red...literally red. His fur looks like I think a polar bear's fur looks... not really that much like a rodent's fur. The cats seem to like the possum population around here. They eat out of the same bowls. Drink from the same water dishes. They don't fuss or fight. And I have learned that possums cannot carry rabies. That's a good thing. (Couldn't you hear Martha Stewart pointing out the positive things of rogue possums???) A raccoon lives in the barn. I'm not fond of him. He scares me. Actually he scares the wolf. LOL LOL He is large and angry... not the wolf... the raccoon. Oh, and the snake... We had a seven foot black snake to fall from our bedroom bookshelf. The poor thing was so scared. My granddaughters nearly fainted. I called Daddy who assured me that the snake would not bite me. I got oven mitts on and went to pick the snake up. The phone rang and it was Mama. "Honey, don't be playing with snakes. You could get hurt." Mama was 70 at the time... I was forty or so. We relocated the snake to the barn. Hmm... I hope he eats that nasty raccoon! The weather is warming up. I'm looking forward to the weekend. Have fun and stay warm!!! Jo :)

Friday, February 16, 2007
Gatlinburg trip with the girls
We went to Gatlinburg before I got too tired to travel. This is a picture of Ashlee, me standing behind Haley, Jessica to my left and Keeley peeking out from behind her mom. We had a good time. I am glad we went!

Friday, February 16, 2007
Death of Jenni Messel
I am devastated. Jenni was an intelligent, vibrant, compassionate loving person. She will be missed... not just by family and friends, but by the SC PHer's. Jenni ... you were simply the best ! ! Jo Williams

Monday, February 19, 2007
Jenni Messel (Pictures included)
I am still reeling from the news that Jenni is gone. So many of you have been exceptional and I appreciate your warm words and support. I am ashamed to admit that I depended on Jenni too much. She was my beacon. My safety net. I would say, "Oh, please, you would not believe how many things that Jenni has going on. It will not kill me to paint this room!" I got out of bed a lot of times because Jenni Messel was out of bed and in the world making a difference. Thank you Janie Moran for sharing these pictures of Jenni. Jo Williams Jenni Messel and Janie Moran Atlanta Conference 2005

Monday, February 19, 2007
Repost: Picture of Janie and Jenni
I hope it posts this time. Jo Jenni Messel and Janie Moran at the Atlanta Conference in 2005.

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