I wish I could rewind my life.

Update!

First off, I just wanted to post that I watched Eva's (65redroses) latest 'vlog', and it brought extreme tears to my eyes. She is such an amazing person, and she will always be in my heart. I am praying so much for her, and her family. Her love inspires me.

Well, this may be my longest blog yet. Let's start with two Fridays ago. Two Fridays ago I was admitted into UCDMC at around 10 or 11 at night. My fevers, chills, and pain were spiraling out of control. I was worried. A day or two after the typical admitting lab draws, results came back that my iron was extremely low. The count was at about 4 or 5 and you should be at 11 or 12. I got two quarts of new fresh blood, through a blood transfusion, and immediately started to feel better. I now have to take 3 iron pills a day, I don't know for how long - or if it will be for the rest of my life. It's not that big of a deal though... Although thy give you extreme cramps if you have no food in your stomach. I also switched off of my Cefoxitin to Merropenum (I am sure I spelt that wrong). I am taking IV Merropenum 3 times a day, 8 hours apart. It seems to have made the fevers and the chills stop. They still have me on 10mg of Hydrocodone (Norco) as needed or every 6 hours for pain. I am getting really dull aches in my legs and pelvic area for some reason. I think it may be either CF-Arthritis related, or lingering nerve pain from my Guillian Barre` Syndrome that I had a year ago. I am also to take 600MG of Ibuprofen 3 times a day. When I went in my O2 was at about 89, but I left at 94, which is baseline for me. They never wound up doing PFT's, which is extremely irritating, because when I was in pediatrics, they wouldn't let me go home unless my PFT's plateaued. I guess all doctors work different ways. I was in for a little over a week, and got to come home this last Tuesday. What a relief.

Well I was doing fine the last couple of days, until yesterday and today, I started running little fevers and getting chills AGAIN. But I do have a confession to make... I messed up my IV antibiotics twice thus far, by sleeping through my damn alarm clock. Or instead of pushing snooze, I will just turn it off... this is NOT good. Why am I so lazy? So anyways, without going too far off track, I really am hoping that is the cause of the fevers... and after tomorrow I will be OK again. I really don't want to make another trip back to the hospital.... Not yet anyway.

The doctors plan is to keep me on Merropenum for at least 12 days, and it is 8 more days now I believe. As long as my fevers stay under control anyway. Then they want to take the IV out (which is mixed emotions for me, since i've had it since November, and getting an IV in me is a big deal, and very stressful), and put me on ALL orals for my MAC. Right now the cocktail just for my MAC is IV Merropenum 3x/daily, Orals Ciproflaxin 500MG 2x/daily, and Azithromycin 250MG 1x/daily. I have to mix the Merropenum myself, which for some reason, I am so uncomfortable doing... because when when they had me on Primaxin a couple months ago, it made me utterly sick, and I didn't know if it was from the medicine itself being too strong, or from me mixing it. Turns out the medicine was just too strong. I am still a little weary about it though. When I was doing the Cefoxitin at home, I was doing fine the first 3 weeks, and then the last batch that I received (they were all IV push, by the way) would make me feel very uncomfortable, light headed, weak, and scared after I pushed in the first 2 or 3MG of it... I would take a break, and then push the rest in and I would be fine. It was weird, and uncomfortable, I think this is why I am just uncomfortable with IV's all together right now. I am still curious as why the last batch of Cef did that though. The doctors think it may have been a bad batch mixed by my local pharmacy. Um... THAT'S nice to know. Scary.

As of now I am just trying to gain some weight, I am down to 89.0 pounds after I poo and pee in the morning. I am 110 on a good day. I can't even fit into a lot of my jeans anymore, and let's just say my boobs and butt, well, their is no such thing right now. LOL. Not cool. I get nauseous lately from all of the medicines I am on, but I think my stomach is starting to turn into steel and I am tolerating it a little better. I have off-brand Zofran tablets for when I feel like I am going to blow some chunks. My appetite is definitely NOT back to normal. I'd say it's about 3/10 of what is usually is. Today I did eat rather good though. I am trying to gain weight and eat healthier foods. The doctors always told me to eat whatever is in site... but just because I have CF and I need to gain weight, doesn't mean that I want to get any other health problems (like diabetes or bad blood pressure). I don't want anything else added to my crazy life! I am going to start drinking 2 glasses of goats milk a day, and see how that makes me feel. I am drinking a lot more juices and waters now instead of sodas. Has anyone heard of milk producing more mucous in your system? I have never heard of that, but doctors have always pushed whole milk on me all my life. I love milk, and even if that is the case, I don't think I would stop drinking it. I just bought some Fish Oil today, because I heard that if you have bad veins, they kind of re-grow them... and if that is the case, BRING IT ON! I have such gay veins, it's ridiculous.

I HATE THE VEST. I rarely take my acapella, and CPT hurts my lung walls. People do it too hard or something. So anyways, I am getting a gym membership as soon as I get rid of these fevers again. I have currently decided that working out may be the one thing that saves me from kicking the bucket. I want to be healthy, and I am tired of my life style right now. I want to be as 'normal' as possible, so gym... Here I come! I am going to start logging my gym results and weight and what not. :) I also want to start taking morning walks, I heard it brings a lot of gunk up... We all love that, don't we? Luckily my gym and tanning place is within walkable distance to my apartment, so I think I may just walk there in the morning and back.

That's pretty much about all for now, I am having a positive outlook on things, and I am not letting ANYTHING bring me down this year! I have met some pretty inspiring people online (Ronnie, Ben, you know who you are!), and I want to be up there with them! :)

Speaking of which, If you CFers haven't checked it out yet... go to CysticLife.org and sign up! It's an online community for those with CF and are affected by people with CF. It is amazing, I can't get enough, and some people stories are just so touching. Also, check out CF2CHAT.com, I am not a very big fan of CF forums, but I love this one. Everyone is very loving, and theirs barely any drama, which is the usual problem at most forums.

And ending this with a question, if anyone from Redding, CA is reading this, do you know if we are having Great Strides this year? I didn't see our chapter on the CFF site. This puzzles me... I really hope we are? WTF!

That's all for now, Hopefully by Monday night I can give you all an update on my first gym experience! Peace & Love.

It has FINALLY HAPPENED!

I FEEL BETTER! LOL.

I seriously thought I was never going to feel the least bit normal again, but these abx they put me on (Cefoxitin) are kicking this bugs ass. I am just so thrilled about it. That's about all I really feel like logging right now, it's kind of late and I wanna go to bed so yeah. Haha <3 Night!

Watching, Waiting...

Nothing new yet, typical fevers still happening, taking motrin & tylneol every couple hours. Chills still happening. I've been out and about though more... So that's good. Just don't wanna get sick. Over all I am just waiting for my doctor to call me back about the sputum cultures, and see what antibiotics I need to be on, which I am hoping it will be Monday, or maybe tomorrow, but that's probably asking too much.

Right now I am just on azithromycin and cipro (both oral)... When I went to Dr. Miles the other day he asked if I needed any re-fills, and dumbass me didn't write anything down before I left, so I thought I still had enough cipro to last me until atleast into next week.... Well I was wrong, I took my last one last night, and now I don't have any. I called about a re-fill at Walgreens, but they usually take forever. Turns out theres a little angel with me because I found some cipro 500mg (same that I am taking) in my cupboard from a while ago when I had a different infection... Go me for saving them! So I totally have enough to last into next week even though I would like the new ones. I don't think that they are expired or anything, but I'd just feel better if I had the new ones. Probably Monday... that's okay though. :)

Lately in the morning my lungs have been so productive, it's really exciting to cough some gunk out. I can't really tell if it's just mucous or if it is a mucous plug... lol. Sometimes I will cough some harder or rubbery consistency stuff up, maybe that's a mucous plug. Either way I wanna get them out.

Well that's all, <3
xx

Adios' bad health, you're gone with 2009.

Well I am pretty sure that I got the first good news today, out of all of 2009. Ha, my cultures came back for the mycobacterium. It isn't the exact "MAC" bacteria that they thought it was, but it is a mycobacterium colonieum or how ever you want to spell that.... I am actually not 100% sure what the doctor said, because I was so excited to hear that my cultures came back. They are going to put me on the RIGHT antibiotics after the 1st of the year. I can't wait to stick it to the man with this nasty gnarly bug. Seriously, it's worn me down crazy style this year.

I am going to be keeping my broviach in my chest, because the doctor said it will be 3 months of antibiotics, of what kind, I don't know just yet. But I'd rather be healthy for when Nick comes back home to me, than be sicker. So it's a dirty job, but someones gotta do it!

I finally got my scale up and running, after almost a week. I don't exactly know how accurate it is, but right now I am weighing in at about 93.5 lbs, so my goal for now is 96.0 by the 10th. I think I can do it, or so I hope... gotta get some meat back on these lil bones of mine.

That's about all I got for now, I've been feeling good, or well, O.K. for the past couple of days, nothing crazy.. so yeah :) Till next time loverbums.


xx

Between yesterday and today, i've been having frequent fevers. I've been having fevers for a while now (2 months), but the doctor said they should start fading away... They weren't as often for the past week, but I think i've taken 3000mg of acetaminophen in less than 24 hours. Plus I am on antibiotics, I hope my liver is ok.

Otherwise, I've been holding up. Christmas is just around the corner so I am trying to stay in a good mind frame. If anything else happens, i'll make sure to post ;). Let's hope not... unless it's good =]

It's almost 5am, and I'm still awake writing a blog.

Lately i've been feeling like a tether ball between my doctors. One wants this, one doesn't, one doesn't like the way the other is doing something, vice versa.... I am just the one getting the punishment for it... no fair.

Anyway, I went to UCD on Weds and I weighed a whopping 99 lbs, watch out Vin Diesel, here I come ;) Naahh but I did gain weight since I was in the hospital 2 weeks ago (a whole 5 lbs).

I am a little pissed at myself because I forgot to ask what my PFT's were, but it's probably better I don't know, considering i've been sick lately, and it would just put me down if I did. I'm imagining somewhere in the 40's though. Before my whole GBS thing in Jan my borderline was around 60-70, so my goal for NOW is 55. Let's hope I get there soon.

We talked about the Mycobacterium that I am culturing and if it is MAC or not, obviously the cultures are not fully grown yet, but if it does turn out to be MAC, it may be treatable on oral antibiotics, just a very long course... (maybe 18 months). If it is a different type, we may have to keep in my broviach and do some IV antibiotics.

As for now I am in the Azithro and Cipro, they took me off of the Primaxin, which was making me utterly sick. Hopefully we wont ever have to do that again. Ugh. I've never really had a bad reaction to antibiotics, besides Vanco, but that was just a rash.

I'm running less fevers now, I am taking the occasional Tylenol if I feel I am creeping up a fever, or something. I have my norcos for pain, and I am happy lol. That's about all as my health is concerned... so I guess I am going to... It's like almost 5am and i'm still up. Goodnight to anyone who reads this :) ! XOXO