hi! I am Alex mom of 3 beautiful girls and I have primary pulmonary hypertension. I really think that I have had this for longer than I first thought. I think that I started having very mild symptoms when I delivered my baby, who is now 4 yr. old. I was always very tired. then, when we moved to Texas, I started fainting. this was the first symptom I had, as far as I can remember. Then I wasn't able to climb stairs. it became harder and harder for me to get upstairs. I ended up crawling up the stairs when no one was watching, it was just so difficult for me to do. luckily we moved out of the house with stairs, and now live in a single story house. other things became increasingly more difficult to do. bending over to pick things up, or make the bed. changing over the laundry because of having to bend over was very difficult. Reaching up to get something I couldn't reach was also harder and harder to do. I was always tired, waking up at 10 am and taking a nap at noon was something I did everyday. then, after I fed my kids dinner, I would fall asleep on the couch for a nap between 6 and 8pm, during Rug Rats and the other Nickelodeon TV shows. Another symptom that stuck in my mind, was that I couldn't eat hardly anything. I would throw up all the time. just thinking about food would make me throw up. I kept going to see my doctor who told me I was depressed and over weight. He gave me Prozac and kept increasing my dosages. I asked what about the fainting, and he said it was panic attacks. He said, there was no way of knowing if I would faint again, that it was up to me and how I dealt with life. Finally, my husband got tired of me fainting, and us not having answers as to why, so he took me to see the doctor. My normal doctor wasn't in, so we saw someone else, who said right away, "this isn't depression, this is your heart." So he started me off with a 24 hour holter monitor. Then came all the other tests, until finally I was told Pulmonary Hypertension. I was very fortunate that he knew he couldn't deal with my PH, and he sent me to DR Frost in Houston right away. I saw DR Frost, and she sent me home with the condition that if I should faint or have any other trouble, that I come back in right away. the next day, I took my girls to see a parade, and I fainted. That day, I went back to the ER, and then went on flolan the very next day. Flolan has changed my life. It has given me back my life. I know that without flolan, I would not be alive. I can do things for my family again that I couldn't do before. I could do things for myself that I couldn't do before. I thank God for flolan. Now, having flolan has had it drawbacks also. I have had numerous infections, and hospital stays, but that is just part of the day to day life of having a critical illness. I will probably be adding more as I get the chance. I just wanted to introduce myself and share the short story about my PH history. with love and friendship Alex ^i^

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Hello friends. Just wanted to let you know that everything is going great over here. I am stabilized as far as the PPH goes, and it seems that the Addison's disease that the endocrynologists found is also under control. with love and friendship ^i^

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this is kind of late, I know, sorry. but I just realized that I put something in the entry before this on Addison's and didn't say anything else about it. let me start by saying that I was so sick that I ended up in the hospital. I had no idea what was going on, except that i was sick! BIG TIME! but neither did the hospital staff know what was going on with me. I was vomiting constantly, diarrhea like crazy, and the weight loss was great! I started out at 148 lbs, and at my lowest in the hospital i was 109 lbs. I went to so many tests to see what was going on with me, until finally they found that I had hypothyroidism. But, the problems seemed worth than just that. So they continued doing tests and more tests. Then they found out that i have hypopituitaryism. And still more than that, other glands were not functioning correctly. So they named the problem (and get this too): polyglandular autoimmune endocrynopathy disease. When i say a local endocryn doc she told me it was also called Addison's disease. This is still all new to me pretty much. This happened in late January and I was released early February. btw, for anyone that doesn't know, I have a web page that I have put all my information that I have researched on PPH. There is a page with tons and tons of links for ph. I know this is bad :-) sorry. But I just wanted others to know of this page. http://www.geocities.com/alexflipse.geo/alex.html My Home Page

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I carry around with me a bag that I have all my "emergency medical stuff" and I wanted to let you know what I carry around with me. I have finally gotten around to make a list of the things inside my emergency bag. The biggest thing in the bag is my book. The book explains what ph is, explains what flolan is and how to mix it. It has a standing order as to what the doc needs to do if my cath comes out, or I get an infection of any kind. The orders also give the names of the antibiotic to give me if I get an infection or whatever. I also have everything that I need to mix, to do a dressing change, all the extra tubbings and claves and ports....all this is in a big ziplock baggie together with a thermometer and the covers for the thermometer. In a smaller zip lock bag I have a days worth of pills, bandaids, ( I guess for the kids if they got hurt) 18guage needles, red caps for the cassete, extra paper tape, alcohol and iodine, gauze sponges and a plastic Hemostate (a pair of scissors looking thing used to clamp of the catheter should it spring a leak somewhere. I have a little bitty bottle of hand sanitizer and in it's own baggie , I have paper towels to clean off the cutting board. Whenever I go out, where ever I go, I carry along with me my cassette that was premixed and extra ice packs in a smaller cooler that holds I guess 6 coke cans. This is what I carry. I just wanted to put this down for any new who didn't have a bag with emergency stuff in it. ^i^

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Hi there! I just wanted to say... OUCH!!! My cath hurts a bit, more uncomfortable than hurt. I think that it is infected. In fact, I am pretty sure of it. I went into the doctor's yesterday afternoon and he agreed with me that it is very red. He gave me Bactroban 2% ointment. I really think it is an antibiotic cream. The doctor swabbed the site and we will find out on either Monday or Tuesday what the results are. I am hoping that I can either take oral antibiotics, or thru the second lumen, IV antibiotics. I have always had IV antibiotics, and it's not that bad. Twice a day Vancomycin and Rosephin ( I don't know about the spelling of either). So those aren't bad at all. It is very easy setting yourself up with the IV's. Gentiva sends it all to your home. You just have to refrigerate the meds, and use very clean procedure. Making sure everything stays sterile, you just hook yourself up. And the iv tubing comes with a dial which makes it very easy adjusting the drip. Take care everyone. with love and friendship, alex ^i^

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this is an email i sent to the friends list on may 25: Hi all. i juts got home from the hospital last night and i wanted to let everyone know how i am doing. we went in on tuesday morning, early, and went to have an MRI. i primed the lines with dan, my husband, out in the waiting room. we had 5 lines of tubing about 30 feet long. however, when they closed the door on the tubing to do the MRI, the tubing was pinched by the door. i didn't know this, and neither did i know that they put the pump inside of the mri room. Nothing happened to the pump, the technician said that as long as it was away from the machine, there would be no problem. they did the MRI, and altho i was in feet first, i was still claustrophobic. we finished off the exam with me praying and praying. It was done in about 1 hour, i guess. off to the hospital we went. no waiting around there. they immediately got me into a room, where i changed into a gown. a nurse came in and took all my info, and then the doc came in. explained to me what was going to happen, and if i was sure i wanted to have the surgery done. He said he always asks his patients how they feel about it, because we know our own bodies and have premonitions about how it will go. He said that he always listens to those premonitions. The surgery went off with no problems, and 1/2 hour after the procedure was done, i woke up. there didn't seem to be any problems, until i was taken to my room. when ever i got up to go to the bathroom or whatever, my oxygen saturation would go down below 88. the doctor that was there, the ph fellow, wanted me to be put on oxygen at home. to make a long story short, i have to be on oxygen now at home. at least until they find out why my saturation levels go down on exertion. this is the story of my hospital stay. i am thrilled to be back home. i am on bed rest now, so off to bed i go. i just wanted to thank everyone for their thoughts and prayers. everything is good. oh i forgot to mention. the size of the fatty matter they took out was the size of a tennis ball!!!!! with love and friendship alex ^i^

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hi everyone! I guess it is time for me to tell you what happened to me the other day. I noticed on Thursday night that my second lumen on the Hickman Catheter was clotted. I called the 1800 9FLOLAN number, and talked to the Gentiva nurse. She told me that since the greatest majority of flolan patients are on a single lumen catheter, that it was not a great emergency to have my second lumen unclotted. She did tell me to go in in the morning to get the catheter unclotted. I waited untill Friday morning to go in, and met my Doctor at the emergency room. The doctor worked for more than ten minutes with a anticlotting drug called STREPTOKINASE to get the clott out of the hickman. When it did get realsed, it shot out of the cath, and scared the royal heck out of me and the doc. It made a popping sound as it shot out. As soon as this happened, I started to feel realy sick in my stomach, my head and my chest. I sat up, and told the doctor and nurse there, that i wasn't doing good and something was terribly wrong. They told me to relax and lay back that i would be ok. I don't even remember lying back, when i was 'transported to another room'. It was like a dream. I could hear what was going on around me , I heard the nurse yelling "cardiac arrest. cardiac arrest." I heard other noises too, alarms going off and people cramming into the room. Slowly I was 'pulled' back to reality. I opened my eyes, and gasped for breath, sitting up at the same time. When I could, I asked my doctor what had happened and he said that I had siezured. It was thought at first that the STREPTOKINASE was the cause of the siezure, but later, my ph doctor, Dr Frost, said that it was too much flolan being pushed too fast. Now, I know that I have had too much flolan before, and it has never made me siezure like that. I just don't know. Anyhow, I spent the rest of the day in the ICU, untill they released me to go home. I did find out a few things. I never did have a cardiac arrest, my heart did not ever stop. I did however have repertory arrest. I also know now to NOT wait to get my hickman unclotted. The most this local emergency room wants to use is Heprin to try to unclot. The won't be using STREPTOKINASE on me again. And finally I learned once again, to trust my own body. I know when things are going really wrong. with love and friendship alex ^i^

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hi everyone! I got a call yesterday from Doctor Frost's office. They had a cancellation for an appointment and wanted to know if I could come in. To make a long story short, I ended up going in and talking to Dr. Frost. It seems that i have an infection on my skin around the catheter. She says that it will be easy to fix with pills (thank GOD!!!) and that the pain and redness will go away shortly. I had no idea that I had an infection, I thought it was because I had tugged on the hickman accidentally. The skin had been hurting for a day and had just turned red last night. I kind of wanted this to be a warning for everyone, especially those just starting Flolan. When something is odd with your hickman, or around it or near it, get checked out. It could save you having to get the entire thing replaced! take care! with love and friendship alex ^i^

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hi friends. I don't have much to say today, just that i am frustrated and tired of being inside. this summer heat is awful. i would love to go to the beach, but can't because of the humidity. would like to take the kids swimming, but the humidity is too much. am i being a baby? i don't even like the kids being in the heat too much. gives them cabin fever too. just whining i guess. thanks for the shoulder, invisible tho it may be. :-) with love and friendship alex ^i^

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I am so angry. I don't know why I am angry. I don't know why i am so mad. I feel like shouting, I AM MAD AS HELL, stay out of my way. I want my old life back. i want to be healthy, and be able to play and run with my kids. I want to go to the beach. I want to relax outside with out the heat and humidity killing me. I want to go back to california. I want to live my real life again. not a sick life, away from family. I am mad as hell. but there are more reasons why i am angry. i am angry that more and more people keep getting ph. there's more reason's why i am mad. i am mad that this disease is affecting my marriage, my kids, my sex life. i am angry that things aren't going my way. that they kids aren't behaving, that there are still several weeks before school starts. that my husband won't be home for 2 weeks and i can't take 2 weeks off and go somewhere. i am angry. i will get over it . i am sure.

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hi friends. I went to the doctor's office today and was unable to seem my pcp because he was gone for the week, on vacation or something. I saw a nurse practitioner instead. I went in for more depression meds, but she examined me, and we found out that i have some sort of infection in my female organs. We taked about the depression and how she thinks that taking antidepressants is just shoving the emotions inward and that i needed and outlet for the anger and frustration and pain and sadness I have been feeling. She suggested a few things for me, and made me promise that I would do them. Twice a week, I am to do something for me. not me physically, but me emotionally. I need to continue writing down how i feel with 2 columns like mimi suggested to me, and to actually add a third column showing what my blessings for the day are. also, when I need to scream, and even when I don't think I need to, I am to go into my bedroom and scream into the pillow and punch the pillow. this will help me channel my anger into something that doesn't care and won't get hurt, instead of into a person or myself. anyways. this is what she told me to do. it might help someone else. with love and friendship alex ^i^

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Dear Friends. I know it has been along long time since writing in this diary. So much has happened to me and my family. i will try to put in the most important things that have happened. The main thing that is grabbing at my heart is the death of my dear friend Danette. We met at the California Forum in 1999 in San Diego. We got along so well and easily, it was as if we had known each other all our lives. And we had so many things in common. Our birthdays were the same, we were diagnosed and put on flolan at almost the same times, we were both married to military men, her's still in, mine in reserves. So many things about us clicked that is was natural for us to become so close so fast. Danette's ph was stable and under control. what she needed was a liver transplant and her insurance would not approve one for her, so she died waiting for them them to approve her for a transplant. i know in my heart that Danette did not have to die, and it is killing me inside that she did. I miss Danette very very much, and i am sure i will think of her if not every day, than sure close to every day. I love you Danette. alex ^i^

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Dear Friends, As is normal for me, it took me a little while to 'get over' the happenings of the past 3 weeks, enough so that i can write about it. So here goes. It all started on the morning of sept 11, 2001. i was mixing my meds as normal, when i get a phone call from my sister Debbie. She asks if we have seen the news yet that morning, even turned on the tv. No, we hadn't. well, she said, we better turn it on. She said we needed to call the hospital to make sure they were still going to be opened, she heard most hospitals were closing up in Houston. She said she was OK, and not to worry about her but hurry up and turn on the television. The horror that i saw when i did was devastating. I couldn't believe my eyes. Terrorism in the United States. Buildings falling to the ground, Planes crashing into buildings. What's going on? we must be in war. there is going to be war. I called the hospital and made sure that they were still open. I was scheduled to go in and get evaluated for transplant the next day. They were open and had no plans to shut down. So, we packed our bags and headed out that day in fear of what we might find. Thank God, everything was fine and there were no further attacks on the U.S. The tests for evaluation were rough. the tests themselves weren't hard, except for the ABG's. i guess it was having them back to back and being NPO all day long. The first day, they took 25 tubes of blood, i had echos, xrays, oh my gosh, everything you could imagine. one right after the other. And of course, waiting around after the appointment for transport to take me back to the room. That was a good thing. They give you a room to go to with a bed to rest at between appointments. I used it alot :-) My tests were scheduled for a 2 week period, and since we live so far from Houston, we stayed with Mimi. Thank you so much Mimi for letting us stay with you! we had such an awesome time, even tho i slept so much :-) Two or three days before the last appointment, i start feeling sick, sleeping alot more than usual. I went in to see Dr LaFuente, the surgeon. I feel asleep in the waiting room waiting for him, bundled up with blankets. Someone asked if I needed a pillow , and i said yes!!! please! then they asked if i wanted to go back into one of the rooms with an exam table where i could lie down. So that's where i went. A nurse came in right before the doctor and he took my temperature. 102.7 They ended up admitting me. Started IV antibiotics thru a temporary catheter in the groin, and later, pulled out the infected catheter. I was out when they pulled the infected catheter, but wide awake and feeling everything as they put the cath in the groin. I guess I don't have to tell you how painful that was. And of course, being the chicken that I am, that made it worse for me. All in all, I was in for an additional 8 days. Desperate to get home, and missing my children so much, I got back on Saturday Sept 30th. Less than a week later, my husband was called up to active duty. He is a reservist in the National Guard. But, because of an injury to his knee, they sent him home, Thank God!! He was gone for 4 days. That's was Saturday. and this is where we are now. The pain in my shoulder is no longer there. it lasted for about a week, and I feel so much stronger now than before. I went to my PCP to get the stitches out, he said how much better i looked. i even had color to my face!!! so that's where we stand. i will write more later. with love and friendship alex ^i^

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hi friends. i took my girls to Turkeyfest... the town's sorta like founder's day celebration... yesterday. they had a parade that we didn't stay for because it was too cold. and i started remember the last time i took them to the parade. 3 years ago. before i went on flolan. had just been diagnosed and was trying to take them everywhere and do everything because who knows how much longer i had. i had just received the 'death sentence' the month before. so i struggled with the heat and humidity and breathing even tho i was sitting down. after the parade, we were walking back to the car, and i started to feel woozy. a little strange. it wasn't an unfamiliar feeling. i had had it several times before. and i knew what the outcome would be. so i rushed the girls to the car thinking if i did, i could sit and rest in the car. i got the girls buckled up in their seat belts, turned on the car and a/c and sat down. i don't remember anything after that. you see, i fainted. and i knew that i would. i tried to make light of it when i came to. my girls were crying, mommie wake up. i asked the people that were in the house we parked in front of if i could get a cup of water. they brought me one and asked if they could call me an ambulance. they didn't know what happened, but i guess the look on my face told them i wasn't well. no no, i said... i'll make it home. i just need to sleep some. besides, who would watch my girls if i went in an ambulance. and i certainly didn't want them to see me hauled away in one of those things. so i drove us home and lied down, kids were ok watching television. when i got out of bed for whatever reason, i called my mil. told her i had fainted. she and my sil made me go to houston. i drove myself. when i got there, my sil drove me to methodist the next day. they put me in the ER, then the ICU, and on October the 14th they started the swanz ganz. they did the flolan test and ccb test and almost lost me on the table from the ccb's. something to do with my blood pressure dropping seriously low. so right away, while i was already on the table they started flolan. when i woke up... my shoulder hurt so bad. and i felt awful. what i didn't know was that they started flolan, and it was 3 days later. i stayed in the hospital for a total of 15 days. they taught me to mix and do dressin changes. and i wanted none of it. but i learned to do it all. as scared as i was, and as angry as i was that they started the flolan without talking to me about it... i was mad. pure and simple. that was 3 years ago today. October 14, 1998. and what a difference flolan has made for me!! Thank you God! Thank you all my angels and Saints. and thank you to my friends on this list. because without you guys... where would i be. i mean this from the bottom of my heart. thank you! with love and friendship alex ^i^

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Good morning friends!!! today is January 22 and it's 10 am. it is amazing!!! i am still awake at 10 am. what's so amazing you ask? i'm not awake usually until around 11am or 12pm. i have been awake all morning. haven't gone back to bed. i am so full of energy and joy and happiness!!! i truly believe i was being over dosed on flolan. i say this because i wasn't eating, drinking, sleeping all the time, not enjoying my music or tv at all. I Almost ran the other day too!!!! My pace is picked up almost twice as fast i as going before. i don't need to park in the handicapped space, but not too far away from it. i walked the entire length of target and walmart on the same day. what can i say? Praise GOD!!! the funny thing is, while i was ill and depressed, i began reading about Praising God in all things. ALL THINGS. i began praising HIm for my illnesses and all that was going on. ALl of a sudden, i woke up with the Spirit inside me. i was over come with joy!!! a few days later, i felt so much better!!! i could cook. i could eat after i cooked, instead of going straight to bed. i don't know exactly what happened. i think that going down on flolan and my realization that i needed to Praise God came hand in hand. i believe that is how our Lord wanted it to be. i have never been this religious in my life, that i can remember. the biggest thing for me besides having energy.. is i am able to eat again. not too much... but i can eat. so much more than i was before. i was going days without some type of nourishment. i am eating !!! the other day, i was speaking with phcentral to start a list for parents who have ph and are struggling to raise their child(ren). Now!!! i am moderating that list!!! everything is going so fast. but i praise God Almighty. I also believe i know why i was brought to Texas. This is where the best ph doc is. This is where i wound find myself and my family. find myself and what i could do. find my family in the respect that i know now how much they mean to me. took me this long, but it has happened. lol. so many people said, with a terminal condition, you learn not to take things for granted. you learn to smell every rose and see everything for what it is. the beauty in it. well. if you haven't seen it, don't despair. pray for light. pray to the HOly Spirit, and to your angels. God will show you the way. He has me. God bless you!!! ^i^

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I have been on Tracleer now for about 4 months i think, and off of flolan for 2. i feel fantastic! the amount of energy that i have is awesome! i don't need to sleep anymore during the day, and can go from 6:30am until 10pm. i can cook full meals and have enough energy to clean up afterwards. i did thanksgiving dinner for my family and we had a total of 11 people on thanksgiving! it was so much fun to beable to cook and entertain and have so much energy left over!

I have been able to climb stairs without getting so incredably short of breathe! we went to Corpus Christi to tour the USS LEXINGTON, an aircraft carrier. They have so many decks and you can access these decks by going up and down these narrow but steep stairs. we walked all day and had a great time!

Food has now become my new best friend! i can eat and am steadaly gaining weight again! Thank God! I can taste the foods and it doesn't repulse me like it used to! It is amazing how much i missed eatting and how much i took it for granted before becoming sick. I now know to treasure the moments , not just eatting, of course, but every moment i have!

There are a few tiny little things about Tracleer, but like any good med, you have these things called side effects. lol. headaches, neck aches, that's all i can think of right now. i had hoped to get my memory back again. i lost it when i first got sick with PH. had hoped maybe flolan contributed to the brain farts, but it's still there. oh well. one of these days, i'll beable to say the words that are the tip of my tongue. lol. or remember the words when i need them, not 2 or 3 hours later, or in bed trying to go to sleep and sit straight up and say "THAT"S the word i was looking for!!!"

With all the great and wonderful things Tracleer has done for me, i know that there is always the possibility that i will have to go back on flolan. and i am preparing myself for that emotionaly. and if i have to, it's ok. i will cherish my time off of flolan with out mixing, and will go back to the routine of flolan. I am so grateful for what flolan did for me! brought my pressures down to near normal, helped my heart go back to normal size, fixed the CHF. I have alot to be thankful for! and a great big huge one of those things if YOu , my PHfriends and family!
God bless
with love and friendship
alex ^i^

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today is an end of a stage in my life i never thought would come. today, my hickman came out. i was so scared and nervous during the night, i woke up every few hours to go potty and check the time. when i woke up, i was so nauseous. i stayed in bed until it was time for me to get up and shower. looking at my chest now, i remember when i first got the hickman. not this one, but the very very first. talk about scared and nervous and anxious. gosh. it seems like a life time ago.

but now, i sit here with an empty hole in my chest where my catheter should have been. i honestly didn't think i'd ever get to this day. you get so used to walking around with the pump it becomes second nature. and when i stopped flolan, and stopping carrying around the pump, i thought that was weird.

am i making a big deal out of nothing?
i don't know. i just know that something that was with my for over four years is now gone. do i celebrate? do i mourn? for now, i'll go sleep.

with love and friendship
alex ^i^

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well, i did it to myself this time! night before last, i woke up with really bad belly aches, then while i was up, my mouth started to itch real bad, the tongue, the gums, everywhere! it was just awful. i took 3 cortefs for the pan hypo pit and went back to bed. that took care of it, so i thought, because the next morning it was gone. by 3pm it came back again. this time just slightly worse. so i wrote an email to Jan explaining to her what was happening. another nurse , Royann, i believe is how you spell her name, called me up and asked me what was going on. i let her know about how tired and worn out i've been feeling lately. and about the itch in my mouth. she asked me a few questions and i explained to her that no i hadn't eaten anything different and no i hadn't done anything different than before, except that we have been painting and working on the new house almost non stop for about 3 weeks now. i also told her how i took the cortef for the pan hypo pit and that took care of it. she had me go look at my mouth in the mirror and sure enough it was all white with bumps at the back. she said it was thrush. how in the world would i get thrush? i am not on antibiotics! she said that anytime you are on steroids (like i am) or prednisone that your immune system isn't as strong as it would be, and it will leave you susceptible to infections such as thrush. and especially since i have totally over done myself with all the work, i was exhausted and even more susceptible to infections. so needless to say, i won't be working on the house.

with love and friendship and tired eyes
alex ^i^

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hello friends.

today is April 24, 2003. I know it's been awhile since I have written but I have needed time to digest everything that's been going on.

on March 20, my dear friend Chrissy passed away. She was such a beautiful young lady. she was 22 yrs old, and full of life. She had Lupus and PH, and we believe the Lupus is what was too much for her sick body to handle. Chrissy loved everyone, and we loved her too. I hate it when they say they LOVED someone after they die. I still love her. I will always love her and won't ever forget.

I had a set back the other day, with sleeping all day, hungry all the time, and gaining weight. I thought, oh gosh! am I going to have to go back on Flolan? well, a few days after all that began, I went in for my tracleer blood tests, and asked to have protime, thyroid panel and CBCs. It turns out my thyroid was out of wack again, and I just needed to double up on my meds. actually, I'm taking 1 1/2 pills a day. not bad says I.

My family came to visit from California and we had a great time celebrating Easter and my birthday. Sure was sad to see them go.
The night before they left, my sister had a real bad stomach ache. she thought maybe she might have had a UTI. when they got home, 3 day drive, she felt worse and worse. finally, yesterday, she woke up vomiting bile. she was rushed to the doctors, and today, they removed her gall bladder.
I'm sharing all of this with you to point something out. I was so scared and nervous for my sister, I couldn't sit still. I was praying all day long for her to be ok. and it occurred to me (after I spoke with my sister and found out that she was OK) that this must be what it's like for my husband, kids, mom etc.. when I'm in all my surgeries. I have always thought that it is so much harder for the care giver than it is for the patient. I say that because the patient just deals with what is given to them. where as the care giver can just sit and pray and worry. it really was an eye opener for me!!!

Physically I'm doing very well! Thank God! Tracleer has been wonderful! some days, I don't even feel sick anymore. I don't use the handicapped placard anymore, and I have begun walking every other day. I have started out walking 10 minutes around the local park. I plan on adding to that time next week. maybe 15 minutes? 20 minutes. not that I am tired after 10 minutes of walking, just don't want to over do it and end up in bed for several days.
oh! and I have gained weight. I am back up over where I am supposed to be. I feel so fat compared to 92lbs. but Thank God I can eat again!!!!

thank you for reading my diary. I hope it has helped you along your journey with ph.

with love and friendship
alex ^i^

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Yesterday, May 12, our puppy died. we don't know why it happened. it really has devastated my kids as well as my husband. who knew an animal, a dog, could get into your heart so fast. certainly not I. damn dog got on my nerves every single day. but now I miss him so much. and my girls miss him. my husband, Mr. strong don't cry for anything former marine, cried yesterday. he didn't even turn on the computer this morning. he just sat on the couch. we will get another dog. this week I'm sure. not that I want one. but it has to be potty trained already. can't shed it's hair, fur, whatever. certainly don't want it to lift it's leg either, so we have to go with female. lol. but the entire experience was so bad... we all had to have a drink. man, I haven't had a wine cooler for over 5 years. it sure tasted good!!! I'll be having another soon. lol. I'm not a lush. lol

we buried Joe outside. the girls put in special things for him. a hand full of food so he doesn't get hungry, his favorite teddy so he doesn't get lonely, a family picture so he won't forget us, and pieces of left over fabric from their rooms, so he won't get cold. then they drew and colored pictures for Joe with a letter of how much they loved him.

damn this lump in my throat, and these tears!!! over a dog?!?

my carly had a rock that was given to her, in the shape of a heart. she took craft paint and wrote Joe's name on it for his head stone. drea took sticks, tied them together and made a cross. after all this was done, our neighbor (99 yrs old) brought the girls a present and told them not to let the little dog chew it up. when he left, they came back to us crying again. I had to stay in their bedrooms last night for a while praying and asking God to take care of him. and telling Chrissy to watch over him and love him like we did.

what a sad day.

with love
alex ^i^

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I just found out that my friend Twoneria Crutcher passed away last year on July 29. We chatted on the telephone as well as emails. I called by chance hoping to speak with her and let her know i have missed our friendship, when my worst fear was confirmed. I will miss you Twoneria. I love you!!!

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Broken Hearted

There has been a big loss to the PH COmmunity this past week. Stacy and Alice have both passed away. They were such caring and wonderful ladies. I will miss them so!

I can't imagine the pain their family and friends are going thru, but this is very hard for me as well. I miss them so!!!

I pray you are breathing well and very happy up there.

^i^

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depressed

i am becoming depresed. i guess it is because i'm worried about what dr frost told me the other day. if i don't loose weight i may have to go back on flolan. of course there were other reasons for going back on, but the weight thing just stuck. i am walking every other day. am having trouble walking every day.

there are other reasons for me being sad. i saw Chrissy's mom and was reminded of her. worried about work. will they hire me with PH? how will i get references if i only worked in the state of texas for 6 months? will i beable to deal with kids all day when all i want it some me time?

my kids are getting mad at me for being on the computer alot. too many chats. so i asked alma to help me out. and she has been very kind in doing so.

the house is getting me down. it is taking too long to get things done. i don't know yet even when we will begin the kitchen and bathroom.  now we have to do the outside first, which makes sense. the stucko work, roof, etc need to be done. at least we have the water conditioner in and a new water heater.  that helps.

they are expecting more of me at girl scouts. they know i'm sick. they know i'm not feeling well.  the heat is getting to me. i keep falling. i fell on my butt the other day scraped up my knees. have bruises all over. i just seem to fall. and i go thru long stretches of time without falling and when i do... i keep falling over and over. yesterday in fact i almost fell. but was able to catch myself on a car.

so things are getting to me now. feeling the crunch.  feeling the world  getting heavier and heavier. 

ok. enough whinning. yea right.

^i^

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birthday

10 yrs ago today i gave birth to my second daughter. born at 2:30 pm, she interupted General Hospital to make a grand appearance. She was sooooooo tiny. soooooooo beautiful. Carly weighed in at 5 lbs 1 oz. i remember she had a huge head, lots and lots of curly hair and the most melt your heart dark blue eyes. Of course all my children took after me with the dark hair and eyes. We brought Carly home to an apartment complex we lived in in san antonio. Carly was born at Wilford Hall  on Lackland Air Force Base. August 27,1993. only 11 months after Drea was born.

let me tell you i had my hands full with the two of them. Carly slept  so much while Drea learned to walk.  But when Carly was awake, she was a little escape artist. She'd wiggle her way out of anything, from the stroller, to the swing, to the baby carrier i'd have her in. 

Once, when Carly was about 4 yrs old, we were walking through a mall. She had wiggled her way out of the stroller. Her sister and I had gone looking at something while Carly and a friend stayed outside. When i got back, Carly was no where to be found. She was lost for a least 5 minutes until someone brought her out of JCPenny's. They heard me screaming her name while mall security looked for her. talk about a scare!

There are so many stories about Carly i could tell you. But for now, all i was say is that she has grown to be such a beautiful, talented and intelligent young girl.

happy birthday carly!

love

mom

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crash bang cool aid

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