What does that mean? well i'm not the type of cfer to go on tv and tell my life story. I'm not going to ask for help to get new equipment or meds. i'm not going to raise money, honestly i hate asking for it. Also my family doesnt really believe in giving money to these "foundations". they are old school people from cuba who have questions when it comes to giving money and not knowing exactly where it goes. I'm usually the one who's in the background fighting on the phone with people from the government which i feel like is the best way to go. I also love to look up on new research with anything having to do with transplants or transplant rejection advances. I love writing to these people and getting feedback even though most of the time they never write back i always think in the back of my mind that they will remember me. This article i found on facebook really seems promising to me. if there was a way to lessen rejection in lungs and have them at least last ten yrs would be amazing. here is the link: http://www.newswise.com/articles/new-clues-found-to-preventing-lung-transplant-rejection#.Uw6BkAnwFlQ.facebook
I've been feeling much better. On Tuesday i went to my aunt's pool for a few hours and just chilled out with my thoughts and took in the sun. It was so amazing how i felt afterwards. i came home and did the tredmil. The next day i did the tredmil again and just chilled at home and ran some errands. Today i went with my nephew to the zoo on a field trip with his class. i swear i must have walked about 5 miles or more. My chest is pretty sore from breathing so hard but the workout was so worth it. Anthony and i got home and totally passed out for a couple of hrs. I love the little man so much, i hope to pick him up tomorrow from school. Today i was having a cough attack and he started giving me therapy on my chest to help me bring up the junk. i almost started crying cause i was so overwhelmed that a little 4yr old boy understood what was going on with me and he knew what he had to do. He also helps me with all my inhaled meds. It's just incredible how much he understands. I do wish sometimes i had the energy he does cause i don't want to let him down when he wants to play but i will spoil him in whatever other way he wants because he deserves it. I love my nephew to the moon and back!!! <3 p="">3>
Monday, February 24, 2014
My parents house, the place i thought was my zen is totally ruined by two people. My mom invited this lady and her daughter to live at my parents house. The daughter is 3yrs old and is the most spoiled, unruly, little child i have ever met. i always thought boys were bad but i was so wrong. I was in the hosp for 9 days came home and got a head cold. I wonder from whom. My parents don't believe me when i tell them that kids transfer germs and even though they might not get sick another person can. it's like i'm talking to a fucking wall. when i left the hosp my pft's were at a shitty 29% and today 26%. how the fuck did it go down so quick. i have only two people to blame. i'm sorry but when you come from a 3rd world country you have germs that live on you that others don't have. i don't really care how evil i sound because it's my life and i'm the one who will pay with my life in the end. It looks like they are here to stay. I bought my mom a laptop for christmas and the lady that's staying here uses it more than my mom. it kills me when i see that because the only income i get is from ssi so it's not like i have all the money in the world. My parents have always been great to me. Except for their denile about my health. they say i'm perfectly fine. 26% fev1, that's great, look at how fucking great i look. i wish they would breathe for one day with my lungs and see how fucking great i feel. My parents have smoked since they were both 14 and still smoke even though i have cf. i just don't understand how they are so great to me in one way and just destroy me in another. I feel like i have no one who understands except my boyfriend jeff. A couple of weeks ago i was so depressed i thought i would have a breakdown. i went to the hosp for iv's and saw a psychiatrist and i'm feeling a little better except for the fact that i'm at my parents house. i'm leaving monday and it can't come soon enough. i know i shouldn't live in a bubble but being with a 3yr old who touches everything she sees is just insane. i want to keep these lungs as long as possible. when i go anywhere i always carry hand sanitizer, i just feel safer. why can't my mom and dad be more understanding.. my mom told me i have to carry lysol wipes everywhere in the house. why don't they fucking wear them, they are the ones who are the guests. FUCK MY LIFE!!!!! I swear i was so much happier in the hosp. i spoke with all the nurses and therapist and docs. even the cafeteria people. i felt like they all understood me and that i needed to get better which i did while i was there. now here at my parents house i'm alone stuck in my room. when i leave my room i have to wear a mask and wipe everything down. I know it sounds like i'm crazy but when i got to my parents place from the hosp there was a bottle of tamiflu that the lady and little girl were taking cause they were sick with the flu. My mom was like that was two weeks ago. it's all gone. yeah, right. i got sick while on antibiotics and today i fucking blew a 26%. I have to stay here til monday but after that i'm not coming back to my parents house. i feel like they have chosen these guests over me. they don't care about my well being and i don't feel like i should be treated this way. i'm upset, i cry, i feel like i have no one on my side while i'm in my parents place. I swear that when i leave here and go back to spring hill and i have to come back for my doc appts. i will stay with my aunt or my sis. I don't care if it hurts my mom cause she does things daily to hurt me. with her smoking and her disreguard of my health. that is all. goodnite.
Thursday, February 6, 2014
So i'm back in the hosp. i was just here in oct. i went to the clinic on monday and i had a total breakdown. I knew something was up last week. It started with my sats being really low. like the highest would be between 93-94 without o2. i was kinda homesick and i just felt really depressed and anxious. So i've been here since tues and my sats are still the same. I'm kinda nervous cause i'm feeling more pressure in my chest. unsure if it's from all the coughing and the vest. i'm honestly kinda scared. tomorrow i have to do a pft, lets see how that goes. my last one was 25%. i was reading old post where i was doing so much better. it makes me so sad cause i have no idea what i'm doing different. i really try so hard. i think it's the homesickness and depression that's hitting me hard. also i lost my bestfriend of over 20yrs. we had a huge fight and now she's moved on. i emailed her but she never emailed me back. now she's with her ex, ex, ex boyfriend with whom she's going to marry and she already bought a house (well he did) and they are moving in. Why is it that i feel that people's life always gets better without me? ugh. so do i need a transplant? i dunno. do i want one? sometimes. am i scared? fuck yeah. i feel like i'll be giving up and there are so many risks with transplants and lets just say my kidneys aren't doing all that great. well my zoloft was upped and so was my clonopin while at the hosp. ok, gotta go. later, wendy v.