In the Hosp. (long update)

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.

I'm 36 and i have CFRD. I wish people understood that sometimes whatever you do, how much you take care of yourself, CF happens. When i was in my late teens and early 20's i worked, went to school and my lung function stayed great. Then my late 20's came and the body changes, your stamina might not be the same as before. is it cf or age?? who knows. I get mad when people think that cfers go into a downward spiral because they didn't take care of themselves. No, not true. CF i feel sometimes is a delayed disease. I'm not saying that everyone will get bad, i'm just saying that sometimes it hits you without you changing your routine in life. I didn't have the chance to take time to workout and do therapy all the time. why? well i had to work to get insurance, back then i couldn't stay on mommy's insurance, i had to get out there and work and i didn't qualify for SSI. I did my best and i'm proud of where i am. Do i regret going to clubs, crazy vacations, and just being wild with my friends? Hell No!! i lived life and i guess now i'm working hard just to stay living it. Yes, my pft's are in the high 20's but i do everything i can to keep them there or to get better. Once you get scarring in the lungs your lung function won't come back. Also i'm at a perfect weight for my height and that has helped me stay healthy but lung function wise it has stayed the same. i meant to put this on another blogger's site but it wouldn't go through.

grandma

Today was my grandma's wake/burial. I thought i knew how i was going to react but i totally fell apart. I looked at her in the casket and she looked nothing like herself. i've seen many dead bodies, young and old but never have i seen someone who didn't resemble themselves. i literally felt myself start to panic and i just thought how am i going to make it 4hrs here? my family and friends really helped me out. i still feel really anxious and just stressed out. i think to myself if i can't handle my grandma's funeral what if someone like my mom or dad pass away? they are my life, i'd be so lost. i want to feel normal which right now i don't. i'm not sleepy nor do i want to sleep. i'm scared of my dreams, i don't want to dream about my grandma. about how i saw her in that casket. i just don't want to break apart. i need to be strong.

Also my MRI came back normal. not sure if i updated everyone already. my mind is really scrambled.

Not about Me anymore

My grandma is in ICU. Her heart is weak from pneumonia and i'm unable to be with my family at the hosp. because as we all know cfers are super magnets for germs. It's ok cause i called my CF doc who works at the hosp my grandma's at and he's actually helping by telling one of his friend's who is in charge of the ICU to watch over her health. I'm happy to say that yesterday was very scary, she was intubated and her heart was very weak. She was only breathing at 20% Today she's breathing at 40%. I know she'll get through this. She's 76 and i know it will be difficult for her to come back but i feel like she still has some fight in her.

The lesion on my spleen has taken a back seat for now. I tried to read the picture CD they gave me but it made me more confused than anything. I usually would of ask the Tech if they saw anything but i was to scared. I also asked my doc if he had any results and he said by Monday. I told him i was so stressed out with everything going on and his response was "RELAX". easy for him to say. lol. I have this horrible thought that the reason i haven't been able to go back to spring hill where i live with my boyfriend is that there's a reason i have to be in miami. maybe it's cause there is something wrong with me. I know it's crazy to think like that but my brain works in a fucked up way. well that's it for now. I hope to have better news tomorrow or in a few days.

MRI today

Today was D-Day. I got the MRI done on my spleen. A procedure which was supposed to take 20 mins took an hour and a half. First the tech couldn't find a vein since i needed contrast with this MRI. it took 7 times to get it done. I'll take pics of all the black and blue bruises which hurt a ton. Also i had to hold my breath for a very lone time which was very difficult when you only have 27% total lung function. They gave me a picture CD so i can look at the MRI and my spleen. I'm not sure how to read it but my boyfriend and i will figure it out. I'm not looking at it without him. I haven't seen him in over a week since he's up in spring hill 5hrs away. I miss him so much. It's kind of weird how he tells me that he wants me home when he comes home from work cause it makes him feel so much better. it makes me happy but i've never had that kind of affect on someone so it's scary too. I don't want to let him down. Ok, i'll write back next week and we'll see how things go. Whatever happens, well honestly if it's bad news i'll try to handle it the best i can. i'm not going to lie it's going to be pretty upsetting. ugh. :/

A Lesion on my SPLEEN????

can't even fathom what this means? i try to tell myself it's nothing since the doc doesn't think it's anything but a lesion on my spleen? really?? wtf! i'm i going to die?? what if i do need surgery? i only have an fev1 of 29% at best. i can't be put under because i'll never come off the vent. i have an MRI with contrast on friday which will tell us more. i'm going back to spring hill on saturday but honestly i'm a fucking wreck! my mind doesn't stop racing and neither does my heart. what could it be? could this be the pain i've been telling everyone about and no one listened to? fuck, i hate thinking this shit. what the fuck did i do to deserve this crap. i want to go back to my boyfriend and just be fine. ok, if this is really something that i have to have surgery for i guess i'll have to be admitted and have it done. don't know how long i'd have to stay but i'd want to stay until i could cough again and be ok. fuck, this is the type of shit that when people go in for it turns out worse. god i pray that next week i'll be saying it was nothing but for now i'm scared as hell. :(

Following Dr's Orders

Lately i've read a ton of posts that read "i'm glad i didn't follow my doctor's orders" when it comes to pregnancy with cf. I'm so happy for the cfers who were able to carry the baby and have the baby, it's great. I was actually pregnant when i was 20yrs old. i told my doc and my family and they said it would be best to terminate it. Honestly i don't think i was ready for a baby. I didn't feel like it was a wrong choice, i think i wouldn't of been able to handle the child and myself. I really don't think i would be here if i would have gone through with it. I believe every woman has a right to do whatever she wants to her body. If men carried children i'm sure abortion offices would be in every corner just like starbucks. I mean men don't lie, right?? lol. That's why mostly love bill maher most of the time. Except when he talks about guantanamo bay but when he speaks about religion and the old crypt keepers that are running our government he is right on.

Also i want to tell people that cf is a progessive disease!!! believe what you may but if you don't think it will catch up to you, you are lying to yourself. I didn't believe it would ever catch up to me. Well by the age of 28 it did. was it my fault, partly yes and partly cf. i should have taken care of myself better. i should be done all my meds and therapy. It's kind of like those people who have cancer that don't even know it. It spreads everywhere and nothing will help. That's how fast cf can kill you as well. So many of my friends dont deserve the shit other cfers say. Like they should have done this or that, it just hurts like hell. They probably did more than you but cf is different with everyone. everyone has a different physiology and anatomy and cf. CF has over 2,000 mutations and it can be as mild as just having tummy aches to killing a child of 5yrs old. People need to have empathy for everyone and give support to everyone who has from high lung function to low lung function because we all need it.