Coping
Patient and Caregiver Diaries
Patient Diary -- The Life and Times of Alex
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Dear friends,
Every day I come to here and look over the list of topics. I find it hard to read all the posts, but for some reason, today I started reading. I see so many new names, and it reminded me of when I was newly diagnosed. I was so scared and anxious. My daily prayer was that God would keep me alive long enough for my children to remember me. My youngest was 2 at the time of my diagnosis. She is now 10. Thanks be to God!
I am what one would call a success story in that I was on Flolan for 4 yrs with NYHA class 3 almost 4. I could barely walk from my front door to my car without having to stop to catch my breath. In the time it took before I was diagnosed, I know I passed out at least 20 times in a 6 month period. and finally, I was diagnosed.
I saw my pcp who sent my to Dr Frost in Houston TX. Dr Frost right away put me on Flolan and i stayed on it for 4 yrs. I always thought I'd be on Flolan forever, or until I died, but Flolan allowed my pressures to drop from 115 to 36, nearly normal! That's when I was weened of Flolan, very very slowly, and started on Tracleer. I've been on Tracleer now ever since. It's been about 4 yrs.
As you see, Pulmonary Hypertension isn't a death sentence. In fact, Pulmonary Hypertension opened my eyes and let me see everything I took for granted.
Anyways, that's my little story. I just felt like I should share. No, this isn't an anniversary or anything like that. In fact, I was diagnosed on Sept 4 '98. put on flolan Oct 10'98 and here I am today!
We all have our ups and downs. Every day on Flolan was a challenge. Mixing, keeping it cold, side effects, Oh! Those side effects!!!!! Let me tell ya! lol. If you ask the long term phfriends, you'll see I had my fare share, and then some, of ups and downs... mostly downs. I'm going thru a down time right now. We recently have had 2 losses in our family. On April 5th my sister Susan died of Cancer at the tender age of 39 with two young children, and on May 7th, my father in law passed away, also with Cancer. They say the bird flu will be a pandemic? I say Cancer is already our pandemic. and right now, I have an awful rash in almost every part of my body. I found out a few days ago, it' scabies, YUCK! the doc seems to think I picked it up at work, I've already missed 4 days of work because of it!!!
Anyways, I just wanted to share. This turned out alot longer than I had first started to make it.
Welcome to all the New PHFriends! We are here to help you! We already went thru it all. Believe me.
with love and friendship
alex ^i^
me? drunk?
No. I wasn't drunk but I sure got a tiny bit tipsey! The girls and I from work were tired from the day but didn't want to go home just yet. So I suggested that we go out to drink at the local Tex Mex place. ( i call the food diarea on a plate. lol. really gross food, but really good drinks!) We were set to go when I called another girl who was off for the day and she said she'd love to go but couldn't because of her son. So we decided to get wine coolers and head over to her place. By the time we got there, her 3 yr old son was fast asleep so we had a great time. I only had 1 daiquiri last night but I usually can have 1 in 4 days time. lol. So not being used to drinking, I was kind tipsey. lol. It was a fun night for sure!!!
^i^
back of their heads
I'm so tired of seeing the back of my family's hed. So Today, Monday and tomorrow, Tuesday, since I don't have to work, I thought it would be fun to get everyone off the computer and out of the house. I'd like some quality time with the family. Just as we were getting ready to go out, it starts to rain. I suggest games, everyone says, YEA! and they run to the computer!!!!!
darn it!
^i^
first day of june
What alovely way to wake up to the first day of June! There's a nice rain going on outside! Huby and lu are going out to breakfast with mil, carly is still asleep and drea is baby sitting. In other words, the house is nice and quiet!!! I think, a little later in the day, I'll go sit out on my beautiful porch and fell the rain come down, smell the freshness of it all, and watch the people dart in and out of the cars. lol. yesterday when it rained like this, i sat on the steps and felt the water on me. it was fun!
the only bummer about rain here in south texas, is after it goes, it leaves behind humidity in the air that is nearly unbearable. I guess that's the price we have to pay for some nice rain. OH NO~!~ the rain stopped!
In a change of subject, I dreamt about my sister Susan. Yesterday, I went to another sister's blog, and she had a pic of Susan and a wonderful rememberance of her. It was hard on me because I miss my sister so very much still. It seems to me that everyone else (my siblings I mean) have moved on. I know I"m not there to see what they do or say except on the phone, and it seems noone but my other sister wh's blog I read and I, are having such a hard time of it.
And every time I hard such a hard time, I dream of Susan. Oh, I guess I forgot to mention it, but Susan's widow Richard, sent us some new pics we hadn't seen before of Susan with the kids.
In my dream, Susan was in hospital like I remember, and I'd go in and check on her all the time. in my dream, she was dying. and I'm not sure if she didn't in my dream. because the next time I went in to check on her, she was up and laughing and talking. she wore a beautiful red dress and she spun around several times. She wore a pair of shoes that had platforms on them, but they were more dressy. It was as if she was going out on a date. I can still see her in my mind's eye dancing in her flowing dress. she looked so beautiful. i wonder if she was trying to tell me that she was alright? and she was happy? I know she is alright and happy... i mean, she's in heaven now! maybe she was telling me not to mourn her so much. that since she was so happy, I should be too? tht would be too difficult.
I have a mass that will be said in her honor on June 5th at 8am at Our Lady of Guadelupe. That will be 2 months since her death. there will also be another Mass for her on her bithday October 15th at 9:30 also at OLG.
this turned out longer than I had thought. thanks for sticking with me. just rambling on. oh and by the way, it's raining again!
^i^
Yesterday at Church
At church, we sit at the far left side wtih the choir. And I was looking for a friend who had asked me to give her a wake up call, but she never showed up. I guess she had to work. So as my eyes wandered all over the church, I noticed a little girl who looks just like Harmony, Susan's daughter. The moment I saw her, I started to cry. just a little, not boo hoo'ing. Then drea saw her and she too started to cry. That was at the begining of Mass. towards the end, during Communion, Carly saw this little Harmony look alike, and really started to cry. I tried to calm her down, but to no avail. We had to leave Mass before it ended. But as I did, the family with that baby was leaving as well. their littles was making a fuss and they just decided to leave, i guess. I stopped them and told them that she looked exactly like my sister's daughter, and my sister passed away. I just had to say something. That little girl was very beautiful, but up close she didn't look like harmony that much. harmony is gorgeous!
work, work, work, work, work,work
I just finished the last of a 6 day set of working. Everyday for six days, I work. So, now I get to enjoy two days off. The week started with Tuesday and Thursday off, but I was asked to come in on Tuesday for a 5 hour shift ( I learned how to prepare the cash for the store and deposits of the previous day. whoopee! lol ) So, I was told to give someone my Friday hours so I can have that day off instead of Tuesday. At least I'll have those days back to back. Maybe, if Dan's off on those days, we can go out some where. would be fun!!!!
On Sunday, my friends Brook and David baptised their baby LaDawn and I'm LaDawn's godmother!!! I'm so proud!!! We took so many pictuers and video also. However, I left my camera and forgot about where I had put it, I actually went across the street from church because the keys to my car had been locked in the car!!!! So i went across the street so that I could call work ( I was scheduled to work at 12 and that happened at quarter til noon). I sat the camera down and my broken glasses because I went to hug the owner of the store, a dear friend of mine. and I ran out the door without it. Then yesterday, my friend's grandkids brought me the camera, with all the pics erased!!!!! waaaaaaaaaaaaaaaa! but at least I now have it.
at least i have the video.
With love
alex ^I^
hey guys!
Secondly, my family just left about 2 hours ago for Galivston. I stayed home because I have to work today. If I didn't work today, I could have gone because I'm off Sat and Sun. oh well. just as well. And I don't go to work until one pm. from one to eight. makes for a long day. I had just as long of a day yesterday and as tired as I am, I cannot sleeepppp!!!!! I've tried falling asleep on the couch where I usually do in the afternoon, but to no avail.
The family will be gone until Sunday afternoon, so I have the house totally to myself. And what I forsee happening is that I won't be able to fall asleep until like 2am because I'm too tired to stay awake anymore and all the lights will stay on in the house because I hate being alone!
I asked a girl from work to stay with me while they are gone, and she said she would, but now i doubt she will. oh well. I'll sign off now and try to fall asleep again. I can't work 7 + hours without having a nap first!!!
with me luck!
with love
alex ^i^
Longgggggggg Weekend and ramblings at 5am
THis weekend was long because I was all alone in the house and like I predicted, I was awake until real late and slept on the couch, giving me a back ache. ouch!
Good thing was, the entire weekend wasn't a waste since I cooked alot and froze alot of meals. I was also called into work on both Saturday and Sunday.
Now, it's 5:30am and I've been up for about an hour. I do have to work today at 9am so I'm afraid I'm going to be so very tired. The good thing is, it shouldn't be that hard of a day. I'll be doing paper work for about an hour. yes paper work at the department store. then I'll probably be doing mark downs. fun fun fun. It's cool. I'm glad I won't be there all day. Just until 2:30. And if I need to, I'll just sleep when i get home from work.
I had a friend over yesterday after church who let me download his music from his ipod, but now I can't find it in my computer. bumer. I wanted to listen to his techno stuff. I love techno. so cool.
Believe it or not, I was, once upon a time, a pretty good rocker. I had my own band where I was the lead singer. We had a drummer, a base and an electric guitar. No back up singers, we hadn't gotten to that. Sometimes I have to wonder what would have happened if I would have stuck to that. But then, my mom, being forever protective of me, wouldn't allow me to be in a boy's house with other boys in their garage! heaven forbid. lol. I'd probably do the same for my kids if they ever ask. The difference would be, why don't you guys come over here and practise in MY garage.
mowing grass
my husband, on the side, mows grass. He actually makes pretty good money mowing. Certainly enough to keep his truck filled with gas and a little extra on the side for snacks and dr peppers.
He came home exhausted and smelley and asked if I wanted to help. I said yea! sure! not knowing what I was getting myself into.
In the very early stages of my PH, I was a mowing fiend. lol. I mowed all the time and on an incline. and although I was a little tired, I could still function thru out the day.
SO yesterday, I said yes but wanted to mow during the early evening while the sun was setting and the day was cooling off. So, we started up the mower, actually, I tried and failed, and my 13 yr old, started it up for me with one pull.
I started out doing really well, and then started to slow down real fast. My husband gave me instructions before starting, just go around the house once and around the trees once. I started to go around the house when I remembered that the water sprinklers were going on on the other side. So I stopped and kept cutting the front. After a few moments it dawned on me!! Why am I doing this when we have a rider mower?????
So I stopped the mower and left it near the front porch. I asked my two kids if they could put the push mower away for me because i didn't feel like I could move another inch. I also had asked Lu to turn off the water on the side of the house.
After much whinning and complaining, drea went to put it away. For some reason, she came in the house saying the mower was gone. As if she wanted me to get in trouble!!!! TEENS!!!!! But when I went out to look, it was gone.
I called for Lu but she apparently had gone back in the house. after a few tense moments with my husbad all upset because his mower was stolen, Lu said she had put it away for me because her sisters were fighting over not wanting to do it.
scared the do out of me!!!!!
I won't be mowing for a while any more.
^i^
pirates of the caribbean
Last night my oldest daughter and I went the movies with my mom. We watched the THE PIRATES OF THE CARIBBEAN http://disney.go.com/disneypictures/pirates/
(I tried to do that HTML but it didn't work. oh well.)
Anyways, the movie started at midnight and is 2 1/2 hours long. well maybe shorter than that because you know the previews are very long. At that hour of the night, the theater was filled with teeny bopers. I felt so very old. I can't imagine what my mom felt like. ROFL. however, those teeny bopers kept kicking my back. i was ready to reach out and touch someone. it really was a good movie though. gross at times, but really great. i'd recommend it !
so I woke up this morning at bout 11am. I was pooped!!! thinking! Oh no! i work at noon! Thankfully, i looked at my schedule and saw I didn't work until 3pm. We went out for breakfast at IHOP and I ran home. Now it's almost 2pm and I need to run and take a shower and get ready for work. I have an hour so I better run. anyways, the point to this entry is, go watch the movie. it's cool!
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