Tuesday, May 28, 2013

My time on the juice...

I find myself weak these past few days. I feel like I can't catch a break. 2 weeks on Ivs  and I have had issue and issue. Meripenim made me extremely nauseous  so after the first week we decided to change because numbers weren't up and on top of the side effects it was needed. Zoysn will take the place. Knowing that zoysn can cause c-diff we follow that up with an oral round of Vanco to possible stop the C-diff  after trying that we get the bubble guts and bloating with the lovely loose stool. I'm at my wits end.
 
Round 1 Tobi Iv every 24
               Meri Iv every 8 hours
               Bactrium 2 tabs twice a day
      Results: nauseous to the extent we need new abx for the side effects and also little to know improvement. 

Round 2. Tobi   Iv every 24 hours 
               Zoysn Iv every 8 hours  
             Bactrium 2 tabs twice daily 
       Add Vanco to possibly help with   possible c-diff infection 
       Add short round of steroids. 
          Results: cough is better but having extremely uncomfortable GI issues

Round 3 Tobi Iv every 24 hours
               Ceftazidime every 8 hours
               Bactrium 2 tabs twice a day 
     Results: even though its soon I think good things will happen with this round. 

With a round of meds like this it makes bouncing back emotionally hard. I'm drained and loosing hope that this might be working. If its not working and we see no progress I fear this is the normal. 

It would make it easier if we could pause the sickens even if for a day so at least once in awhile we can feel some normalcy. 

I just need to feel better I need to feel useful to others and not a burden. Maybe not this week I can achieve those things but hopefully at least 1 of those is in my near future 

Everything is hard when you don't feel good; everyone is even more annoying. I think If I don't get better soon my family is going to kick me out for being a pain in the ass and emotional unstable. So I might be looking for a place to stay just till the meds straighten out -jk but keep it in the back of your mind just incase haha

No peace tonight...no love tonight just hello kitty xoxo

Saturday, May 25, 2013

Same page


I was talking with my best friend and she asked about my grandma on my moms side, the crazy thing is i wrote this just 2 days earlier. thats why were bff's cause she and i are always on the same page. <3 ya B

I see alot of my grandma in me. I think we have the same eyes and the same spirit. I feel her sometimes when I'm weak and I see her in my mothers face. I never met this woman I call grandma but I know I love her.I love when I hear stories about her that make me laugh but more importantly I love the look on my moms face as she reminiscing about the most import person in her life. My grandma was a fighter and I think I got that fighting instinct from her; but clearly it's my mom who brings it out in me. The thought of leaving my mother alone breaks my heart and gives me motivation even when things get hard. Happy birthday grandma Phil xoxo


Friday, May 24, 2013

lesson learned


Even after all these years of having cf I still hate to have my blood drawn. I get anxious and nauseous. Certain things I have learned to come to terms with but when it involves needles I'm a no go.

I went to the local laboratory to get some basic labs drawn and also a test to identify my genes I know one is n1303k and hopefully I'll find out the other one and maybe open some new opportunities with the new medicine. 

As I go in I notice the young lady behind the counter looks familiar but I always think I know everyone so I shrug it off and wait for my turn. 

Turn out we live in the same little town and I went to school with her and her brother. I knew she looked familiar and was surprised she knew who I was. So its time to get my blood drawn and she asks me to sit in chair 1. I sit. She is going to take my blood. Well,.... I was waiting for over an hour and she didn't help one other person but wanted to stick me? Weird 

Have you ever had a blood draw that just makes your stomach turn. It's not the poke that hurts it's the pressure and the jiggling of the needle when they switch out tubes. That was what I was experiencing. I was breathing trying not to pass out cause the room was spinning and I just kept telling myself breathe breathe. 

It was done. I walked out and thought did I ever offend this girl? Did we have some beef that she was going to right by giving me the blood draw from hell? Did I say something when we were younger? Call her names? Tease her? Nope nothing came to mind so I'll just chalk it up to lesson learned. Be cautious who takes your blood and make sure you have no history with that person especially if its bad history

Wednesday, May 22, 2013

a preview

here are the previews of our engagement photos.
we are thrilled and cant wait to see all the photos.
hope you enjoy our preview and we cant wait to show you
the rest once we get them.














Wednesday, May 1, 2013

May 1st

It's May that means its cf awareness month. So here are 5 things I think you should know about cf
1. Cystic fibrosis is a genetic disease. I'm the only person in my whole family (both mother and fathers side) to have CF.
2. I cough a lot and with that usually comes flying mucus. So be cautious when approaching me.
3. When I was diagnosed at 10 I thought only the really sick kids got the vest. So when the doctors wanted me to get one I secretly cried that night.
4. One of the hardest things about having cf is the way it changes your family and how it works. It can change everything and it takes special people to be apart of it and accept the reality of this life that comes with this disease.
5. The average life span is 37. I know way to many great people who never reached their mid 20s. The fundraising adds years to lives and so does transplant but even 37 is to young to leave this earth
There's your random 5 facts for the day. I hope you take some time and spread awareness.
Peace love and hello kitty to all
Xoxo Jess
 

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