PHCentral: the difinitive internet resource for PAH information and support for Patients, Caregivers and Medical Professionals
COPING WITH PAH: Patient & Caregiver Diaries
PAGES: 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12


Patient Diary -- Alex ^i^
flipse@nodial.net

Sunday, January 14 2007

my sister Susan

I know I've spoken about Susan alot, b ut lately she's been on my mind and in my heart. I love her so much. We were so very very close when we were young. And as I started my family, she was with my nearly every weekend. She loved the girls so much and every time she'd come for a visit would bring them all kinds of gifts, for no reason what so ever except that she wanted to. THe only thing she ever wanted in this world was to have babies of her own. And when she had them, she loved them so very much! Susan was my hero. She survived crisis and choas. The only thing she could not survive was cancer. It was the cancer that ate up her body. But thru it all, she continued to smile and have peace with in her. I can only strive to be like that. Susan was such a beautiful person, inside and out. and she was so damned talented. We sang together. we played guitar together. she taught me to play guitar. she loved her 12 string guitar and her banjo. man could she play!!!! I remember wanting to be just like her! and what kills me now is this. I have been sick for 8 yrs. in august it will be 9, She was sick for what? 6 weeks? well, i'm finding out they knew well before telling anyone. nearly 5 months. She was having heavy vaginal bleeding, not thinking anything about it, she went about life normaly, until it wouldn't stop. that's when they went to the docs. But i never once lost hope that she would live.  it hurts me knowing how much she had to have suffered. she knew she would die. she told me. in her own way she told me.

it has been 8 months since she passed. i can't believe it!
I want to go to her grave site and mourn her. heck! i just want to mourn her. as soon as the tears come, they go as fast as they got there. I miss my sister so much!!!!!

will the pain of loosing her ever stop? i doubt it.

^i^

Comments ()



Tuesday, January 16 2007

3 days in a row

this is th third day in a row that i fall asleep late and wake up at 4am. don't really know what's going on with me. but i hate this!

Comments ()



Tuesday, January 16 2007

I saw my pulmonary doc last week and was told to loose weight and wear my o2 and and and....

now i have another appointment for tomorrow at 2pm to see her again. i'm worried because i've never had appointments so close to each other. so maybe the cat scan showed something or the echo did.

maybe i'm not going crazy knowing that there is something wrong with me. i don't know. either way i'll find out tomorrow.

wish me luck! ^i^

Comments ()



Tuesday, January 23 2007

content

I feel content today. Not realy sure why. I'm not jumping up and down with joy, just content. Carly and I are finally talking and (I feel) working at a relationship, work went well today, and we even sat down to dinner.  It was a good day I think.


^i^

Comments ()



Wednesday, January 31 2007

Today I've already gone to the gym and work. waiting for kids to get out of school so I can pick them up.
While at the gym I saw a sign for adult martial arts class. However, if I did that, i'd have to quit the gym. but i haven't been going to the gym recently until today. i am planning on doing the gym more often, if I don't get too lazy. i'll wake up in the morning and think, i don't want to go to the gym today. or, it's too cold to go out. but whenever i do go to the gym, i always feel better than before.  i really just don't know what to do. cuz the martial arts thing is only once a week and i try to go to the gym 4 or 5 times a week, for the same price as the juditsu. oh well. i'l figure it out one way or the other. one thing is for sure, i can't afford to do them both.

^i^

Comments ()



Friday, February 2 2007

feeling down in the dumps

for many months now, i've been wanting this supervisor job at work. i'd do very well if given a chance. but all those in management have to be able to work 40 hour weeks and more. well because i can't work that much, i was completely looked over. we talked about how i wanted it and everything but all they said was, you need to be available more hours. I feel like if it wasn't for this damned ph, i'd be able to work 40 hours plus and would have received that supervisor promotion!

 

I'm 36 yrs old. I feel like I'm a peeon to everyone and am getting now where at work. i've been there over a year already, and this girl that walks in as seasonal Christmas  help gets it.

i'm just feeling pretty bad all the way around today. having a pitty party for myself. anyone's welcome to join me.

^i^

Comments ()



Monday, February 12 2007

update on me

WELL, Here I am, another day another dollar. Wishing the dollars were alot more than just one. lol. I'm expecting my sister and her husband and kids * my godchildren, and I'm freaking out because the house is a wreak! Carly spent the night lsat night at a friend's house and the only thing I asked her to do was to clean the living room. do you think she did? Nope! And she left before I got home from work. I was tempted to call and ask that she come home and clean up but I couldn't do that to her. how embarresing! i guess I should have!

Lu and I went out to eat with my work friends. It was fun but boy was it expensive!

Today will be a clean up day and hopefully Carly will spend most of the day at her friend's house so Lu and I can clean up. with Carly here, we can't do anything. She refuses to clean and fights with me and lu. Although Lu says it's not fair that she does all the work and Carly doesn't do a thing. That's the way it works around here, unfort.

Oh well.

^i^

Comments ()



Sunday, February 25 2007

home sick

Having my family here this past week , of which I think we saw them for just a few days because I have to work, reminds me just how incredably important it is for me to have my brothers, sisters , neices and nephews close by. but being 1500 miles away makes it really hard. When Susan died I was so angry at myself for moving here. We could have had 10 good years with her. maybe I could have stopped her from making mistakes she'd later regret.  but now I'm the one regretting things. missing people who i love so very very much!

I sure wish we can go home to Cali  for  summer vacation!  That's what my hubby said we would be aiming for.  hopefully!!!! God willing!!!

I miss everyone at home so much! I hate that my neices and nephews don't even know us!!! I hate how much time has gotten away from us and how much the kids have grown since the last time we saw them.

I can say that I've slowly come to accept this tiny town. I'm not staying I like it, but  I am saying that I love my home and time with the kids. and I'm not loving my job so much anymore. but that will be saved for another post I thinks.

with love to my loyal readers and you know who you are!!!

 

^i^

Comments ()



Wednesday, February 28 2007

over doing it

For what ever reason, yesterday, I totaly over did it at work. I was so tired after wards all I wanted to do was sleep. I was so exhausted after 3 1/2 hours of working. Im' going to have to learn to not over do it again!! it really took a toll on me physically and emotionally. maybe that's why i was so angry yesterday.... and still am today. perhaps.

 

I gave up chocolate and cussing and gossiping for lent. the cussing has gone out the window. i was really hoping i wouldn't cuss and that after lent, i'd be more apt to not cuss anymore. but that didn't happen. the words just kinda slip out of me and i don't even see them coming, until they are out. i was able to stop myself from saying things for the first few days but then all the anger built up and i had to let loose or i'd lose my mind.

I'm doing really well on the no chocolate and the no gossiping. i have to let go of the anger and hate, and perhaps the cussing will leave too.              

wish me luck!!!
^i^

Comments ()



Tuesday, March 6 2007

seriously bummed dude!

Well, I was hoping to get time off of work to go see my honey and dd but looks like Im going to have to work. it totaly sucks. i miss them both so much! at least the mil can take the kids to see them. totaly sucks!

seriously bummed dude!

Comments ()



Sunday, March 11 2007

kids

You know how I've been talking about how hard it is to raise my kids? well, I've come to a realization. I can't handle my middle daughter. I can't dicipline her, she runs all over me and worse yet, all over her little sister. So my mil and I came to an understanding and an agreement. I would sign papers giving her rights to take her to docs and school etc, and I'd see her next month. My mil would take her and keep her for how ever long it takes.

Yes. I feel like I've failed her. Yes I feel like I'm letting her down and abandoning her. But this is for her best interest. If I didn't do this, she would continue abusing me and her little sister.

This is one of the hardest things I've done. letting her go. I haven't been able to teach her any skills in the 13 yrs she's been her. She has very very little social skills and is so inmature! Hopefully my mil will be able to do what I haven't been able to. Hopefully she can raise her and undo the harm I've done in not being able to raise my own child.

Like I said, this is one of the hardest things I've had to do, not just for me but for my kids.

God willing, it's not for not.

^i^

Comments ()



Thursday, March 15 2007

Excited/Depressed

Why am I both excited and depressed you ask? I'm excited because my oldest child 14 yr old Drea will be coming home today. I'm depressed because it won't be perm. and because of the reasons why she's coming home. I can't really say why she is except to say that she's really in need of couceling which my husband was supposed to take her to but didn't because there weren't any councelors out there. I'm thinking she will be with me for a short time, just enough time to get her to the councelor. i'm keeping her because she said she'd run away from my mil if she were made to stay there. she has threatened to run away from me but has never.

We need prayers please! my entire family is in need of prayers. please if you pray, pray for peace in my family and my children to be kids again.

on a brighter note, my husband has decided to retire from the military with 20 yrs in service in December. YEA!!!!

^i^

Comments ()



Tuesday, March 20 2007

The dogs

The dogs? the kids? which is it? Well last night, at about 3am, and 3:15 and 4 and 4:30 and 5 and probably even before then, the dogs would bark for some unknown reason. bark and bark and bark and growl. all i could do is yell at them to shut up.  they woke everyone up in the house too because i heard my eldest yelling at them to shut up too.  I'm so tired this morning.... as are the kids. 

I know I'm always complaining about something.. hopefully this will get better. I'm working at becoming a better person. (anyone see Master of Disguise?) This is alot of hard work because I feel like i'm not that good.

Anyways.....  i'm ready to get rid of both of the dogs at this point.  

^i^

Comments ()



Wednesday, March 21 2007

scary!!!!!

I was making dinner this evening and turned the oven on to 450 degrees. About five minutes later, i turned around to see black smoke bellowing out of the oven. i opened the oven to see what was wrong and I was greeted by flames!!! i made lu get out of the house and i called 9-1-1 in a matter of minutes they arrived.... 2 trucks a bunch of volunteer fire fighters, and ambulance. By the time they arrived however, the fire died down. they could tell i wasn't kidding though because there is black smoke all over. not too bad though.... Thank God I thought to turn off the oven and call 9-1-1!!!!!  I won't use the oven until i get someone over here to check on it and see why it caught fire. i haven't used my oven in a while... at least 2 weeks.... so i don't know. 

that sure was scary!!!!!!

Comments ()



Saturday, March 24 2007

a day for cooking

Today, I've already made 3 batches of home made mashed potatoes, 3 batches of waffles, countless chicken legs in shake n bake.. and more!!

i'm pooped already but it's good to do this ahead of time for me because then i just pull out a perfectly portioned zip top bag from the fridge for the week and don't have to worry about cooking.. just heat and serve.  kids are eatting waffles now for din ner so there will only be 2 batches of waffles for this week's breakfasts. lol.

^i^

Comments ()



Friday, March 30 2007

Testing and seeing the doc

Yesterday I went to Houston with my momma where I had a day of testing and finally went to see the doc. I had blood work, spiro and 6 minute walk. I walked something like 1583(?) feet during the 6 minute walk. I think it went down a tiny bit because I was wearing the wrong type of shoes. lol.  my bad.

 I waited over 2 hours to see the doc, of which i think I napped 1 1/2 hours. lol. A fellow walked in and checked me over and then the doc, who was there for less than 5  minutes. the only concern they have is my weight. i gained 20 lbs in two years.

It was a good visit with everyone surprised that I have had pph for 8 yrs and that I can work and exercise. I know it's not normal for a PH'er to work but I do know there are more long term ph'ers out there.

anyways, it was a good visit, i'm happy to report!!

they do want me to see my endocrynologist. fun fun fun!

^i^

Comments ()



Saturday, March 31 2007

Dan's on his way home!!!!

Dan is on his way home! he left at 8am and has just about an hour and a half to go.  I'm so excited for him to be home!!!  YEA!!!!!

 

 

 

 

 

^i^

Comments ()



Monday, April 2 2007

Mr Schaeffer

My wonderful neighbor, Mr Schaeffer, died at the age of 103 and 5 days. We are going to his viewing and funeral today i'm kinda nervouse about going to.

 

Rest in peace Mr Schaeffer. you lived a long beautiful life.

we will miss you!

Comments ()



Wednesday, April 4 2007

yesterday

yesterday i received a call from the junior high school. I needed to go in and speak to a police officer about my oldest child. She had taken some codien to school, which is a narcotic, and it had found it's way to someone else's bag. both she and the other kid were suspended until Tuesday and had to go to an alternate school for kids who were kicked out of school for one reason or another. She will be there for a month, i think.

She received codien from Walter Reves in DC because of her knee. She said she took it to school because her knee was bothering her.

Since she returned from El Paso staying with my husband, she has totally changed. Red flags are going up all over the place. is she doing drugs? is she hanging out with the wrong people?

my little girl has changed. she's now saying things just to hurt me. she doesn't really know how much it really does hurt me. i think.

Comments ()



Friday, April 20 2007

happy freaking birtday to me.... i'm sick!!!

Yesterday I woke up with a sore throat which escalated to a cough and sniffles. now I'm shivering cold, probably with a fever.

i'm 37 yrs old today and I feel miserable. I really hope this isn't how the rest of the year will go. 

^i^

Comments ()



Sunday, April 22 2007

back from hospital

Hi guys! like my sisterDeb said, i was in the hosiptal with high fever and dehydration. fun fun fun. i'm still not up to celebrating, can't even get any sleep yet. wasn't able to sleep at all in the hospital, but what else is new? rigt? lol.

 

just wanted to say hi! and i'll talk with you guys more later

with love

alex ^i^

Comments ()



Monday, May 7 2007

not again!!!

I'm sick.... again.... it really sucks!

 

^i^

Comments ()



Thursday, May 10 2007

another three day stay

Just came back from another three day stay from the city hosptial fun fun fun! I had some sort of infection in my throat which turned into a sore throat and caughing... the thing that freaked out the doc was that i had another frever over 100 degrees. do i off to hospitalville i go.  lots of fun! I'm so stuffed up it's not even funny! i need my mommy!!!

^i^

Comments ()



Wednesday, May 30 2007

hubby's home!

Hunny is home for a few days. it's nice to see him! just bummed that he won't be home longer than three days. he flew this time instead of driving ten hours to get here. it's really nice having him home!

^i^ 

Comments ()



Friday, June 1 2007

CARMELITA

11 days ago, I came home from work to find the dog's kennel taken off the hinge and the back yard torn up with trash and our chairs thrown everywhere. even the bird bath was tiped upside down. Carmelita was gone. (See pic below.)  Today, i got the strangest feeling that I needed to call around looking for her... again.... I called the dog catcher who told me to call the vets in town... which is what i did. Guess what????  I found Carmelita!!! She was at the vet's place!!!! I had to pay for room and board for 10 days, so it wasn't so bad. We are so glad to have Carmelita back!!! We missed her so much!!


Comments ()


PAGES: 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12

Powered by Coranto



Advanced Search

Need Webboard help? Frequently asked Questions

 

 

 

 

Recently Diagnosed? Medical Issues Coping With PAH Financial Topics Newsroom
Talk Action Central Features Contribute Recognition Links Books

Help Search Site Map About PHC Disclaimer Contact Us

HOME

Recently diagnosed?
Medical Issues
Coping With PAH
Financial Issues
Newsroom
Talk
Action Central
Features
Contribute
Recognition
PAH Resources
Actelion
Platinum Plus Sponsor
 
Advertisement:

Support PHCentral
Click here to buy Amazon products
This website is accredited by Health On the Net Foundation. Click to verify.
We comply with the HONcode standard for trustworthy health
information:
verify here.