Old blog, new blog

I am going to be starting a new blog. I want one that is dedicated to my life with CF, especially with me going for a lung transplant evaluation very soon. I made this with the intention to keep up with my photography projects, but got way to busy to keep up, then sadly because of my health- photography has been placed on the back burner for the meantime. I will keep this blog to update about family- and I will make sure to post the link to my other one here soon.

I am in the hospital again. So I will have plenty of time to start a new blog! I will be here a minimum of 2 weeks.

A lot has changed since last spring. I feel that I could write a book on my life over the past 8 months or so- a best seller at that! I have lost family (not through death, through them choosing to let me go again), I have been well, I have been sick, I have helped my sis plan some of her wedding, I have cooked new recipes, my baby girl turned 5, I turned 31, I saw my little boy off to the 2nd grade and my baby girl off to pre-k, I had the doctor appointment I have dreaded my whole life, I am scheduled to start pulmonary rehab, and the words double lung transplant were used at my annual appointment.. Life is going so crazy fast, or should I say scary fast? I learned life is too short not to forgive and not to love-- but also that I do not want to beg to be loved by someone who does not really want to love me.

I am so tired and sick from the medications right now--- that this post will have to be a teaser and short. You have my word that I will once again return!

I am so sad.

I hate CF. I hate leaving my husband and kids. This is going to be a rough couple of weeks- but I am keeping my eye on the prize, that is how great I should feel this summer! With only a few weeks left of school for the munchkins, I must get myself in shape to have loads of fun with them over break.

So, I am headed into the hospital for a few weeks. And that is the last place I ever want to be. If you think about it, say a prayer for me- and an extra one for Caleb and Addy. They were both having a hard time with this last night. It is hard to explain to a almost 5 and 7 year old that this is going to be a good thing, when all they are thinking about is mommy going away again.

I am strong-- I can do this.

Will it ever end?

I haven't written in awhile. I don't even know what to write anymore. Every single time I open this page- I draw a blank.

I have now been in the hospital for 13 days, 9 hours, 23 minutes. I was told that I should go home on February 8th. Now it looks like I will be here for at least another week.

I am tired. I am depressed. I am so very homesick. I miss my babies and husband more than I could ever put into words. I feel gross. My skin is hospital dry. My heart feels sad. I feel like nobody even cares that I am here. The world just keeps going on while I am trapped inside these 4 miserable walls. If you haven't noticed the theme to my blog post, I am close to my breaking point. Actually, I do not blame you for not reading past this point- or any point above this sentence. I am just using this as a therapy and I am writing as real and raw as my feelings are.

I did not realize just how sick I was. I was a very sick girl. Very sick. My infection had grown out of control and we were trying to treat it with medications that were obviously not working. They may have kept symptoms at bay- but they were not getting rid of any infection. When I arrived at the hospital I could hardly breath. My fingernails were blue (ish). My o2 was low, low, low. My fevers were high, high, high. My cough was nasty. I was in bad shape.There was no home IV antibiotics this time. Actually, I do not even think I could have done them at home if I wanted to. I could hardly stay awake because of how low my oxygen was. I cam in sleeping almost 18 hours a day. Again, talk about sick. I was crying constantly. I was (and still am) an emotional roller coaster. I was having multiple anxiety attacks a day. I was scared. Terrified. I couldn't catch my breath. I couldn't breath. I felt like I was drowning. I was drowning- in my own mucus. My joints were on fire. I couldn't walk. I had to scoot and limp everywhere. I could hardly walk from the couch to the toilet and back. I was sick, sick, sick. If anyone is even reading still, I think you get the point. I was sick.

Now I sit here in my hospital room. Good old room number 6229. Yes, that would be the crappiest room on the floor. It has the oldest piece of crap TV. The lights are all screwed up. And the volume on the television is either non-existence or blaring loud. I am so bored. I am also so depressed. I don't feel like talking to anybody- but that does not even matter because I honestly don't think many people even care that I am here. Hellloooo. Is anyone out there? Does anyone care that I have been here for 2 weeks already? I am just shocked at how few visitors, cards, ect, I have received. I guess 30 years is just too long to be sick. Does anyone care that I am so freaking sick of this. I am so sick of this disease. I am sick of Cystic Fibrosis. I am sick of what it does to me, my family, and my friends. I really need a hug. A big hug. One of those healing hugs that temporarily take away all of the pain, sadness, and worries.

I started a fundraising page a few weeks ago. I cannot afford to have CF anymore not that I ever could, but I can't now more than ever)/ I need a miracle. Gosh, this is so hard to write while crying. Why can't I stop crying? My eyes are burning as I type- so please forgive me if this makes no sense. I need money. I really need money. I need help. I need a miracle. I have been so sick this past year and owe on a lot of medical bills. I am now just adding to that with this most recent stay. Now would be the time for someone to tell me that I am really an heir to some huge corporation, or that I have a relative that left me a nice chunk of money--- or even someone to step up and say, I want to help this girl out. Anyone? Any takers? I know, so far fetched, but it is the only hope I have to hold onto.

Just because I have CF does not mean that the rest of my family's needs go away. My children still need clothes, food, heat, a roof over their head, shampoo--- we still have other bills, and CF is not cheap. My meds cost us a small fortune. I have not been on vacation in 3 years....we so desperately need a vacation, but there is no way we are even close to being able to afford one. Oh, I could go on forever, but I won't, I will stop.

On a positive note, I am feeling the best I have in MONTHS. Seriously. I am feeling really good. I am going to be able to be a real mom and wife when I get home. That gives me joy.

So, if you read this whole thing (wow, you must be really bored!) and you feel at all encouraged to help me out, check out this link and you can donate to my medical expenses. You can donate with a credit card. Thank you everyone who already has helped me. I am so humbled by the love, support, and prayers that so many people have given to me.

Click here to help me

**I promise that I will cheer up** I am just in a bad place of my life right now.

In the hospital again

I am sick in the hospital again. I am at 

Akron Children's Hospital
1 Perkins Square
Akron, Ohio 44308

RM#6229

Same as last time. High fever, lung infection, sleeping all of the time. I will try to return phone calls and messages when I start feeling better. I will be here for awhile. I WILL get better this time. I refuse to keep getting sick like this!!!

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