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Wednesday, September 09, 2009
Trying to Cope
I have only been diagnosed with pah for several months but have been having trouble breathing for over a year.  I have other medical problems, scoliosis, 2 open heart surgeries, diabetes, congestive heart failure and being overweight, which includes around 10 different meds. I was just put on tracleer so I have not seen any benefit yet. This disease has taken over my life! I have to rethink when I go out (which is rarely) to make sure I have enough oxygen. I am not gone very long since I have to take water pills for the chf I go to the bathroom alot!! I have been on a leave from work since end of May so I am trying to go on disability but I am only 53 years old and divorced. The ss office has my birthdate wrong so I have to get that corrected first but I have to get a copy of my birth cert since my original is torn.  While all this has been happening I do nothing but sit, just no energy. I am going in 2 days to talk to a counselor to talk to someone. Between being sick all the time and the medical part of this I just cannot work. This disease takes over my concentration, my quality of life, my self-esteem, and my confidence. I tend to keep to myself as family and friends don't understand even though they are supportive. That's all for now.

Thursday, September 10, 2009
dr visit
Went to the docs today to just follow up with her about starting tracleer and going on disability. Well......i have been going to her for about 15 yrs and love her to pieces but she is always running late. My appt was at 4:40, needless to say I got there early around 4:10, finally got to see her at around 5:30. By then she was tired and i was hungry and afraid my oxygen would run out! So i felt like i had to hurry so she go home. She agreed with me again that going on disability was the right thing to do. She said she still does not know how I got pah. I guess i am special!!!! Since i am diabetic as well so i have to go back to get blood work done since the lab was closed at that time!!!I did loose a couple of lbs which was good. I have appt tomorrow to speak to a counselor since this disease is getting too me as well as other stuff. It has helped finding this website and being able to put my feelings down cuz you guys know what it is like. i try to talk to the docs about it but they really don't know.  They want to give another drug or send you to have another test done. well i guess i feel a little better.

Monday, September 14, 2009
one day at a time
went to my counseling visit on friday. i think it did some good. i was able to talk about my pah as well other things in my life. it was good to get things off my chest. i am going to go today (i hope) to file for perm disability. i keep putting it off cuz i don't want to think i cannot work anymore. i am only 53 and going on disability is for OLD people not me!! but this breathing stuff is terrible!!!! you have your good days and then WHAM you have a bad day that just kicks your butt. if it is not getting enough 02 then it is the weather or doing too much. i have been reading some other entries on this diary forum and it has helped but i don't want to think that will die from this thing. i am scared of dying. i have so many other health issues that the fear has been always there. i had my first open heart surgery when i was not quite 3 years old and the kids in school would tease me cuz i could not take gym. they would tell me i was going to die soon. i always have put on a good front which i am doing now with my family especially my mom. she still worries about me (which all moms worry about their kids). enough complaining.....off to the ss office, wish me luck.

Tuesday, September 15, 2009
Disability benefits
Well, today i went to the social security office to apply for ss benefits. i was there for 2 hours! It was friggin hot and some kid kept scrreaming!! I was worried that I would run out of oxygen. Finally left there around 5 pm and made it home. it is going to take 2-3 months for a response then i am going to look into medicare or medicaid for my insurance. i wish i went sooner but i guess i did not want to give up that part of me to not work. i am hardly doing anything here at home and still having sob. i guess i have to take baby steps.

Sunday, September 20, 2009
nothing to talk about
well nothing new to talk about. i went to my 2nd visit w/the counselor. she has been helping me w/this disease, like coping and talking about dying. this i cannot talk about with my family. i have a hard time w/dying, i always have. even with my chf and 2 oh surgeries i could still look in the mirror and see that i was ok. now when i look into the mirror i see myself with this tube up my nose. i have to take it eveywhere; on any trips outside the house and then i feel like i cannot enjoy myself cuz i worry i will run out of oxygen. then i use inside; in the shower, in the kitchen, to bed at nite,, i never forget. today i am having one of my bad, off days, no energy, breathing shallow, no get up and go! thought i might color my hair......maybe that will bring me some cheer!!!!!!

Saturday, September 26, 2009
Peanut
Well, diary, not much to talk about. I read some of the other entries and they talked about their pets. Well i have a cat named Peanut. He is white and orange color. He was a stray the neighbor found almost 2 yrs ago. I could literraly hold in one hand. He was so small. My neighbor knew i was looking for a cat and he found him around the front of his door. Just as he was asking if i wanted him, a new neighbor that just moved in walked by, we asked her if it was hers. she said yes and he must have "gotten out". well, i told her i would take him and she said his name was peanut and so we kept his name. he is not a lovely dovey cat but he has been great companionship for me. he has never had an accident in the apt  (other than a few hair balls). I have been home since may from work and he does not like it when i leave. when i come home he keeps walking around my legs and meowing to me. he loves to drink out of my cups. i always drink water from a plastic cup (i hate to do dishes) so when i am not looking he will junp up on the table and drink my water!!! Usually i will put something over the top or take it with me. He is very nosey too. he doesn't like people food except yogurt. he will eat the lid from the container. as long as i am seating watching tv he is ok but when i am up doing something he follows me around. when i get up to go to bathroom middle of the nite we walks to the bathroom.....he knows what i am going to do !!!lol.....he has been great company for me expecially now when i am home. I have a 28 yr old daughter that lives w/me but she is not home all the time.well, getting late, talk to you soon.

Sunday, September 27, 2009
Sunday Entry
Well, just back from a baby shower for my niece, her first one. She got married 2 yrs ago a week apart from when my daughter got married. No i don''t have grand kids, not yet. But the shower was very nice/ i was a little sob during the party and it was hot in my sisters house so i was anxious to leave. There is no humidity out today, just nice. I am going to talk to doc tomorrow about sob and also been a little shaky on my feet. Oh well!! Took my mom with me which she always has fun. I needed to run to the store but just did not want to take the time, When mom and i go to the store we both have to have a riding cart, she is with a walker. I wrote about my cat, Peanut, earlier. They are mowing the grass around my apartment and he hids when he hears it! He is probably in the closet, that is his favorite place. Talk to ya later.

Monday, October 05, 2009
SAME OLD STUFF

WELL, DIARY....HERE I AM AT 1:30AM SITTING AT THE COMPUTER WRITING IN MY DIARY. I HAVE BEEN HAVING HARD TIME SLEEPING AT NIGHT. SINCE I AM HOME NOW I SLEEP LATE AND GO TO BED LATE; SOMETIMES IT IS 3:00 AM WHEN I GO TO SLEEP! SOMETIMES I TAKE A NAP DURING THE DAY. I HAVE BEEN SO STRESSED OUT ABOUT GOING ON DISABILITY. MY DAUGHTER IS PAYING MY RENT AND MY MOM HELPED WITH MY CAR PAYMENT. I JUST HATE TO ASK FOR HELP!!! I HATE WHAT THIS UGLY DISEASE HAS DONE TO MY LIFE!!!! I AM 53 YRS OLD AND I THOUGHT IF I COULD WORK UNTIL I AM 62 OR 63 AND THEN RETIRE, THNINGS WOULD BE OK. BUT NOW SINCE I CANNOT WORK MY DISABILITY WILL BE HARDLY NOTHING. I KEEP TELLING MYSELF THAT ONCE DISABILITY KICKS IN, THEN I WILL BE ELIGIBLE FOR OTHER THINGS. OH WELL, I DO HAVE A ROOF OVER MY HEAD AND HAVE FANTASTIC FRIENDS AND FAMILY. BUT IT STILL SUCKS,.

Tuesday, October 06, 2009
CONTINUATION

HELLO DIARY....AGAIN....., DID I TELL YOU HOW MUCH I HATE THIS DISEASE......SOB ALL THE TIME, CRAPPY DAY TODAY, NO ENERGY, NOSE KEEPS RUNNING,  O2  24/7, TIGHTNESS IN CHEST, NO PAIN ONLY IF I AM ON MY FEET A LONG TIME,. HAVE BEEN DIZZY A LITTLE MORE THAN USUAL, MIGHT NEED TO CHECK MY SUGAR, I SEE THE DOC ON THE 23RD, HE IS THE CARDIO AND PULMONARY DOC. I HAVE ALSO BEEN SEEING A THERAPIST, I HAVE 2 MORE APPTS LEFT (BECAUSE OF INS ONLY HAVE 5 VISITS FREE).  SHE HAS BEEN A REAL HELP, GOING BACK TO MY CHILDHOOD MEMORIES. SHE HAS ALSO OPENED ME UP ABOUT GOD AND HAVING ANGELS. I HAVE NOT BEEN TO CHURCH FOR AROUND 2 YRS.  I HAVE BEEN FEELING LIKE I NEED THAT BACK INTO LIFE NOW. SEEMS LIKE A GOOD FIT.

Friday, October 30, 2009
ROUGH WEEK

well it has been a rough week......i have been so tired and lazy. i have been sitting around on the phone or watching tv. i am still waiting for the outcome of my ss benefits. i have until 11/24/09 of when my std runs out. been home since may 09, i have realized i cannot work any longer. it is too hard to do the walking and even talking on the phone, i get out of breath. it will be 4 yrs in december since i started there. i would like to retire now (i am only 53) before i get so bad that i cannot do anything for myself and enjoy life.  i went to the seniors place that my mom lives and there was a lady, around mid 60's, who has ph. we were talking a little bit but was noisy with all the kids for trick or treat. i would like to talk to her some more. i have even thought that if i get ss disability that i could move to my moms building. it would not be what i would like to do but might be what if have to do. financially it has been verrrrry hard for me. i do get help from my daughter and mom but i cannot keep doing this each and every month. the ssd will be less than what i am getting from std now. i have realized that i will need to get food stamps and medicaid. that is on my list for next week.