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COPING WITH PAH: Patient & Caregiver Diaries
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Patient Diary -- Grace Frazier
jarrodanme@yahoo.com

"Oh lord won't you buy me a mercedes Benz"


Tuesday, July 12 2005

another day in this crazy world!

Well, I guess my life like so many of us is really turned upside down! I have so little energy, I lay down and my mind races , from before this "sentance to now, the road just keeps getting harder! I don't know really when I was offically diognosed with pph, it started in March 1999, such a good start in the new year, both my sons were expecting babies in Dec.! I had just got my license for Administrator  with the state to run a 200 bed asst. care facility. life was so good! I never was ill except as a child, I had asthma but seemed to out grow it, I only took an asprin for a head ache and antibotics for my cronic sinus  infections from time to time. In Nov. of 1998 I was told I had hpo thyroid and was started on synthroid, I hated I had to take a pill! I also always ran a low blood pressure. That March, Istarted  to have swelling in my feet ,legs and lower abdomen, I had retained a house Dr. for my residence if needed plus by law we needed a medical director ,she seemed like she knew her "stuff and we became friends, when the fluid came on , she had an ultra sound done on my lower abdomen, I thought maybe I had a tumor!  my blood pressure had shot up!  she put me in I.C.U. for 2 days, while there , I was given lasix I.M. and they removed 30 lbs of fluid! I was sent hom on oxygen, 24/7 2 to 3 liters!

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Friday, July 15 2005

same ole' stuff, different day!

well, I have been under the weather last few days so haven't made an entry, its been pretty hot here in "my Calif. used to love the heat! loved Vegas in the summer, the river, the beach now I can't breathe when it gets to 80' ! when I went home, from the hosp. in 1999, I really thought I would get better! and after I realized I wasn't, I had really bad depression, laying on the couch all day, food brought to me from the chef @ the facility I ran, I gained 50 lbs. being in that "fetal pos." I was in a relationship for 11yrs. and we had a big house and I could barley load the dishwasher or the washing machine. I had a new car but no desire to drive, no one really thought I was that sick, finally, now, I think people are taking me serious! my nails now are blue , my nose and cheeks, I am on o'2 @ 7 to 8 liters , I take lasix, aldactone,an asprin and synthroid.I have never had a heart cath, I've been to un. Dever hosp. I've been to ucsdla jolla, ca.

 

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Friday, July 15 2005

same ole' stuff, different day!

well, I have been under the weather last few days so haven't made an entry, its been pretty hot here in "my Calif. used to love the heat! loved Vegas in the summer, the river, the beach now I can't breathe when it gets to 80' ! when I went home, from the hosp. in 1999, I really thought I would get better! and after I realized I wasn't, I had really bad depression, laying on the couch all day, food brought to me from the chef @ the facility I ran, I gained 50 lbs. being in that "fetal pos." I was in a relationship for 11yrs. and we had a big house and I could barley load the dishwasher or the washing machine. I had a new car but no desire to drive, no one really thought I was that sick, finally, now, I think people are taking me serious! my nails now are blue , my nose and cheeks, I am on o'2 @ 7 to 8 liters , I take lasix, aldactone,an asprin and synthroid.I have never had a heart cath, I've been to un. Dever hosp. I've been to ucsdla jolla, ca.

 

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Friday, December 9 2005

Well, its been such along time since I have done an entry!

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Friday, December 9 2005

Well, its been such along time since I have done an entry!

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Friday, December 9 2005

Well, its been such along time since I have done an entry!

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Saturday, February 25 2006

Its been so long since I have come here, why?? depressed, ill, worried about family, ect. life goes on!  just read Brigette H. diary and shes so wise beyond her age! a really neat person, my daughter inlaw had thyroid surgery, it was suppose to be for 2 hrs, turned into almost 6! she had had massive radtion on it a few months before to try to destroy it,but it grew larger and it "melted like glue to her vocal cords and other vital areas, we then found out it was cancerous, so far all the test have come back neg. for it in the the rest of her body.I feel so damn helpless! used to be so in control, able to help out more and now I feel so usless!

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Sunday, February 26 2006

well, its  12:30 a.m. and I feel so bloated, ! I turned to my comfort in food again, some times I think I am trying to kill myself! I don't care for cake and pie but I love real food, ribs , shrimp,baked potatoes ,stuff like that, and tonite I did my own "red lobster" feast, 21 shrimp and all!! god, I am a mess,I hate being alone, its something I can't get used to no matter what. never used to be that way,way back"in my other life" don't have enough to keep my brain busy, and its really getting to me!

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Sunday, February 26 2006

well, its  12:30 a.m. and I feel so bloated, ! I turned to my comfort in food again, some times I think I am trying to kill myself! I don't care for cake and pie but I love real food, ribs , shrimp,baked potatoes ,stuff like that, and tonite I did my own "red lobster" feast, 21 shrimp and all!! god, I am a mess,I hate being alone, its something I can't get used to no matter what. never used to be that way,way back"in my other life" don't have enough to keep my brain busy, and its really getting to me!

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Sunday, February 26 2006

well, its  12:30 a.m. and I feel so bloated, ! I turned to my comfort in food again, some times I think I am trying to kill myself! I don't care for cake and pie but I love real food, ribs , shrimp,baked potatoes ,stuff like that, and tonite I did my own "red lobster" feast, 21 shrimp and all!! god, I am a mess,I hate being alone, its something I can't get used to no matter what. never used to be that way,way back"in my other life" don't have enough to keep my brain busy, and its really getting to me!

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Sunday, February 26 2006

Well, last nite my oldest son came over and we had a good visit, I was so very lonely so it was good. today is another day sure need to find an interest in something to do, my mind is really stagnating, need a hobby, damn!

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Sunday, February 26 2006

Well, last nite my oldest son came over and we had a good visit, I was so very lonely so it was good. today is another day sure need to find an interest in something to do, my mind is really stagnating, need a hobby, damn!

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Sunday, February 26 2006

Well, last nite my oldest son came over and we had a good visit, I was so very lonely so it was good. today is another day sure need to find an interest in something to do, my mind is really stagnating, need a hobby, damn!

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Saturday, March 11 2006

soooooooooo tired too!

Well, here I am again! I am so depressed , no, I won't take drugs!  I am tired of all this, and so scared to let go! sounds odd huh? I am so lonely for companionship, someone to hold me in thier arms, someone who loves me even like this. Its so strange how you think you are so commited to someone that if something like this happens, the love will surround you., my  sig. other ,I was so true to, so loyal,she had ,had a really serious back surgery and was in hosp. for 4 days, I bought a hand cart to lug my oxygen in so I could be by her side to help her to read to her to even bed bathe her! also I was caring for her elderly mother @ the same time, and I drove her with me every day too. When she came home, I arranged for a hosp. bed, walker and cane, I drove her 3 days a week to p.t., and walked her in the driveway, lugging my o'2 cart too! she got better and she never once thanked me for my care I gave! as this monster progressed in me she grew futher away, I even had a heart to heart with her, was she frightened that I would die or become hosp.? she said no , then she went back to an old life style she had had before me drugs and booze and cheating!  the nite I found out about the cheating, we had gone grocery shopping and had a trunk full! as so as we pulled up to our house, some grossley llarge woman came up, she looked shocked and asked "what she was doing there?" she said she followed her home one nite and saw were we lived ! she stated to me that "they were in love and there was nothing  I could do" I just started LAUGHING! really loud , I looked @ both them I asked her "if that was the best she could do"? she said she would go an talk to her, well, the trunk had 175.00 worth of grocerys,meats froz. food ect! she did not come home for 3 days! it took me 4 hours that nite to empty that stupid trunk! crying all the time and lugging my oxygen as I did it!  anyway, thats when I realized that people can really be so disloyal, so untrue, so hurtful, I guess there maybe some good out there but dear lord where????????? I was with her for 131/2 yrs.

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Tuesday, March 14 2006

Well, going to try this again, just have spent alot of my time looking back  @ my life!  lost both my parents by the time I was 13yrs, born the 10th child  of older parents, mom 40 , dad 64 yrs! 5 girls -5 boys . was a really sickly kid as a  young child, asthma, ear infections  ect,ect! kinda outgrew the asthma, became very athletic , we always lived near the beach, Redondo, hermosa ,  mahatten . When my mom passed I was 13yrs, I @ first lived with my closest sister, she  had married our  ex- uncle in law ,( thats a whole seperate story, lol ) they bought a new home out here in Orange Co., paid 13,999.00 for it now it is worth 300,000. I started 10th grade here , I was a surfer ,  I joined girls athletic ass. just loved sports! and I was healthy! so I don't know what went wrong? I was not too into boys, although, I knew I was supposed to be, I loved hanging out with my girlfriends, when I was 16yrs, I moved to Louisiana to live with my brother  I was so close to and his wife , he and my oldest brother had moved there to work for the proff. diving co.s  they made tons of money and they sure spoiled  me! bought me Chrysler Impearial conv., credit cards  and  paid for my school. I was so bored, so restless longing for something so diff.

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Sunday, May 7 2006

I have been really sick, had a major infection in both eyes!it spread out to my face! eyes blood red and face all reddened around my eyes ! The dr. prescribed eye qtts. that were very expensive  but did the job ,thank god! turned out the eye qtts. I put in my eyes for moisture were contaminated and that caused a fungus like infection plus to join the " eye party" I got a massive sinus infection, I couldn't sleep  well ,only 1 hr @ a time all week so this last fri. noc I slept for 3 hrs @ a time and boy that felt good! but last noc , I had a horrible dream, dremt(can't spell) I was dying, not just saying it but I was with 2 nurses @ my side, and I was really going thru the process of dying, @ the end my breath was leaving me and I started calling to god to please take me to my  mother, please be a heaven and then I woke up, crying, and shaking and of course I could only doze a few mins @ a time I am still upset today by my dream and so scared! well enough, just needed to put that down , don't know why except I feel like I am talking to my "family " when I am on this site! I love you all- Grace

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Sunday, May 7 2006

I have been really sick, had a major infection in both eyes!it spread out to my face! eyes blood red and face all reddened around my eyes ! The dr. prescribed eye qtts. that were very expensive  but did the job ,thank god! turned out the eye qtts. I put in my eyes for moisture were contaminated and that caused a fungus like infection plus to join the " eye party" I got a massive sinus infection, I couldn't sleep  well ,only 1 hr @ a time all week so this last fri. noc I slept for 3 hrs @ a time and boy that felt good! but last noc , I had a horrible dream, dremt(can't spell) I was dying, not just saying it but I was with 2 nurses @ my side, and I was really going thru the process of dying, @ the end my breath was leaving me and I started calling to god to please take me to my  mother, please be a heaven and then I woke up, crying, and shaking and of course I could only doze a few mins @ a time I am still upset today by my dream and so scared! well enough, just needed to put that down , don't know why except I feel like I am talking to my "family " when I am on this site! I love you all- Grace

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Thursday, June 22 2006

@ the root of this diease is a patient- a person .  A pair of kidneys or a heart will never come to the dr. for a diagnosis and treatment.  They will be in a anxious, fearful , wondering person, who is asking puzzled  questions about an obscure future , weighted  down by the responsibilities of a loved family, a job to be held and bills to be paid!

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Thursday, October 12 2006

depressed

well, just sitting here tonight, sad and depressed feeling all swollen and bloated. Feeling so isolated and lonely, trying  hard to shake it off, but my lord its so hard! my mind wants to do so many things but my body won't go! I hate this diease, I feel so cheated, and are ther others like me that had so many friends  and over the yrs since I have had this , they have all slipped away, I get stares in the stores and I have started getting angry over this,telling people off, just wanted this on paper, don't know why, can't rest, can't walk can't breath!

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