Nov. 14, 2011

Dear readers/glancers/everyone:

I apologize for being absent for about a month and a half. I either never knew what to say or didn't have time to type or just didn't feel like sitting at my computer any longer. I don't even really think I know what to say now, but here I am.

I had my doctor's appointment on Oct. 19. It went alright. My weight was up about 3lbs so that was fantastic. I go in for PFTs and after one blow, the machine breaks. So to be honest, I have no idea what my PFTs are right now. That makes me a little nervous, but since my first try was around my baseline, they didn't fret about numbers and sent me on my way. *whew*.

I think ultimately I will phase the blog out of my life for future employment reasons. I don't want it to negatively affect if/where I get a job. My thoughts and feeling about my health/disease are becoming more solid and detailed and I don't feel like they all need to be posted here. On that same note, I don't feel like my personal life should be available for all to read either, so I don't feel the need to post about it either. It's the same reason my facebook page is more barren than it used to be. Those who need to be informed, or who I feel should be informed, about my life will be. Everyone else will find out through the ever-informative grapevine.

I love my blog, don't get me wrong. I'm actually really proud of it. However, I just don't have the "bug" to keep up with it. I wish I did, but I have so many other things going on that are important to me or are demanding of me that typing up my feelings and thoughts and memories just aren't in the top tier of priorities. I would much rather be spending time with the people who are important to me.

I do have one more thing to write about, and I may be back from time to time, who knows. I wanted to write on the experience of moving in with 3 girls I did not know and trying to slowly introduce them to and explain to them my health "stuff" without being blunt or awkward or weird. It's an art. And while I have no real advice on how I did it, somehow it worked. I think the funniest moment was when one night I was doing the Vest and one of my roommates realized what I was doing. She knocked on my door and I shakily yelled "come in!" While she stood in my doorway she made a comment that made me laugh: "I want to touch you!" She then proceeded to dive onto my bed to feel the Vest and how it shook me. My other roommate then realized what was going on and ran into my room too saying "me too!!" and came to feel the Vest as well. After a few seconds of that, and some time of them begging me to talk while being shaken, they left. Still regularly, that first roommate likes to come in my room while I do the Vest and begs me to talk to her. I think overall my roommates have acclimated to me having multiple machines in my room and a million meds to take quite well, thankfully. I was really nervous at first, but alls well.

It's final week so I may or may not post again soon. I'm really not sure to be honest. We'll see.

-Andrea

Where did I go?!

Oh hello again blog! Sorry I kinda forgot about you... things have been busy, SHOCK I know.

One of the things I added to my schedule is... RUNNING. Yep. I'm running at least 2 miles a week. It's not much but it's a start. Hoping to bump it up this week a little. Getting ready for that doctor's appointment!!

Swamped with school, future, friends, sorority, and everything else I cram into my crazy weeks! It's been fun though. And all is well!

Great Strides walk coming up in 2 weeks!

Sorry I don't have much to say! Just glad to be BACK!!!!!!!!

-Andrea

Back to the grind!

Y'all I'm so happy to be back. Actually, that's an understatement. To have my life back means the world to me. While I don't get to really participate in formal recruitment due to missing so much, it's ok because I have my friends and class and my freedom back!! My arm has almost completely healed already, however the blisters left scars and I have the usual "arm button" (like a belly button) from the actual line, which still has a little more healing to go. I'm feeling pretty good too. I'm a little tired from jumping right back into recruitment and school, but I'll have time to come up for air in a few days.

School looks like it's going to murder me this quarter, but I'm really not stressed about it. I really feel like I can handle anything. The summer quarter, flying by so quickly, taught me how to stay focused and work even when I'm really and truly tired of doing homework. That's what is going to get me through this quarter. I'm taking a full load (12 hours for a quarter system; that's 5 classes for me) and it will be chock full of busy work, homework, papers, and tests. But I can do this. That's not to say I won't have moments where I just cry into a kind shoulder about how much I hate school and how tired I am, but I can do this! I've already found that mentality of "school will never end, you have several years left, suck it up and go" so hey! What's another 3-5 years?....

Time to get a little homework done (yes, already) before recruitment this evening!

My "arm button"!

-Annie

PICC Tales- the last full day (Picture heavy)

I promised pictures, and here they are! Time to finish out my PICC tales for this 2 week session.

So since I've been home, I've had my dressing changed twice. Not fun at all. Each dressing change, due to skin complications, sent me to the edge of tears/passing out from pain. One of my stitches has also been bleeding during all this time and that caused a lot of pain when it had to be cleaned too. My home health nurse Bridget changed the dressing on Thursday, because I developed a spot of something underneath my dressing and it needed to be freshened up. By that night and Friday morning, it was completely ruined and needed to be changed again. Turns out my skin had blistered under the dressings and those blisters had popped under dressings #2 and #3 and required a dressing #4 on Friday. Luckily, this last dressing has lasted. My overall rash is completely gone leaving me with rough skin on my arm and my face, so I'm getting the spa treatment tomorrow after my PICC comes out! The only place that still itches is under the dressing where it hasn't had air to heal.

The broncho-spasms have quieted down thankfully and have not been as bad.

One thing I haven't mentioned that some of you know already is that my parents left the country last Saturday and returned this Saturday! They had their 35th wedding anniversary cruise planned out for months and my hospitalization almost made them cancel! Luckily, after lots of discussions, we worked out a deal where I do the IVs myself (see the picture of the extension below) and my sister-in-law and nephew live with me for the week my parents are gone to help get me through. I'm glad my parents didn't cancel their cruise and trust me enough to let me check myself out of the hospital on Monday and take care of my IVs while they were gone. It was a huge step in me being independent (as if I wasn't already lol) and them trusting me with my health even more.

So, I promised you pictures so here they are, with captions and explinations to walk you through kinda what I've been handling and going through.

Warning: I do have pictures of the exposed PICC (well almost exposed) and blistered skin.

My 3rd dressing, ruined thanks to my blisters.

The blistered skin and uncovered PICC (with Biopatch still on)

The 4th and final dressing- layers of folded gauze to protect the skin and the PICC

The line extension- what's made it possible for me to be independent this week!

Two of my meds in the compression balls- Tobra (L) and Fortaz (R)

Zyvox- my third antibiotic which had to be hung on the dreaded IV pole

I thought I got to leave this thing at the hospital.... nope. I did learn how to set up an IV bag and line though, which was pretty cool.

This was the cool device that set the mL/hr rate. Very cool.

Mom made me this cake when I had 3 days left!

And on a completely different note, I got my new Vest today!

I decided not to take pictures of the alcohol prep pads, the saline flushes, and the heprin just because it was pretty standard. But those have been very common sites at my house since I flush before, after, and in between each IV dose, clean with the alcohol prep pads in between everything, and hep lock with heprin after each IV session ends and flush the unused port for that day with saline/heprin each morning and night. Since this PICC had duel ports, I had to switch them out each day and replace my extension every 3 days. So much to remember but once it became routine, it was no big deal. However, I am very tired these days but I think once I get back in my normal day routine (you know, the one that DOESN'T involve IVs) I won't be so tired! My PICC pulling appointment is at 10am tomorrow (Thursday) morning and my facial is that afternoon. I'm almost done!

See you on the other side!

-Andrea

No pictures still...

Shame on me! I haven't gotten around to taking pictures yet. Still adjusting to home life.

7 more days and I'm DONE. I am very ready to have this PICC out... it's the been most frustrating PICC yet. It still hurts a week later and has been bleeding today. My home health nurse is checking on it tomorrow. I think it's just the extra stitch in my arm since they messed up the first time.... ugh.

My rash is still just as itchy as every.

I've also developed a bronco-spasm with one/all of my IVs. Great. So now it's hard to breathe when doing my IVs. Again, most frustrating IV case so far.

Thank you to EVERYONE who has brought me food, dropped by, or called/text to see how I'm doing or if I need anything. Yall are the best and I wouldn't be able to do this without you.

Guys, I'm tired. This is exhausting. I don't remember this being so tiring. I guess that's what happens when you get old, right? Yuck. I guess the 5am-11pm thing isn't helping. Oh yeah, I'm starting treatments 30min before my IVs to help manage/prevent the bronco-spasms.

Still no official ruling on the arm allergy, by the way. I don't think I'll ever really know.

I have guests tomorrow and my IV is almost done so I guess I'll call it a night.

-Andrea

Home IVs- Night #1

Hello all! I think I'm doing well keeping up with the blog while I have all this "spare time"! Tonight was my first night home on IVs in right about 2 1/2 years. Learning curve! Luckily it did all come back pretty easily. The only curve ball is that one IV that has to be hung from a bag on an IV pole. Honestly, I feel like a nurse having to set up an IV bag, but it's not really bad. I was nervous doing it the first time, just since it was new, but my home-health nurse wrote out step-by-step on how to do it and my sister-in-law, who learned it with me this afternoon, was walking through it with me. We had no problems and I feel confident now in doing it tomorrow morning. Luckily though, it's not my 5:30 dose!!

I'm doing treatment now, so late, because I spend most of my IV time in the den being social. I'm ok with staying up late to do treatment and getting up early to do IVs/treatment. I figure if I need to, I can grab a nap during one of my 2 breaks. But I did notice something: my motivation to take care of myself was reignited 10-fold during my hospital stay. I was reminded how WORTH IT it is to take care of myself every day so I don't have to go back to the hospital any time soon. It flew by, honestly, and I didn't suffer *too* much, so it wasn't a horrible experience. However, I wanted nothing more than to redeem myself, go home, and take care of myself. And it's a good thing I'm rejuvenated with this because right now, my medicines consume almost the entirety of my time awake during the day. From 5:30am-11pm (plus treatment if I do it after the IVs like I'm doing tonight). But my dear friends, hear me loud and clear...: IT IS 100% WORTH IT. I want to have my health and have my life and if I have to devote some time and pain and discomfort and frustration to GET more years added to my life, then so be it. I was blessed and cursed with this disease and I have to take the bad with the good, suck it up, and handle it with a smile. One of the best parts of my hospital stay was the many times I got to tell a nurse/doctor/RT/anyone how I haven't been in a hospital in over 2 years. Their reaction was motivational to me. I want it so much more than that. I want to boast about 5 years or 10 years. It sounds crazy, but I believe it's doable. But only if I don't get down about myself again.

****If you are reading this, and you hear me complain or read about me being down about having to take care of myself, please take this last post and rub it in my face until I remember what these 2 weeks felt like. Thanks!****

I'm also upping my Vest time from once a day for 15min to twice a day for 30min. I really don't like the Vest, so I'm proud of myself for this change. It will take some dedication and a little push from those closest to me, but I know I can stay with it. IT'S WORTH IT IN THE LONG RUN.

While in the hospital, BORED, I stumbled upon a website that sends an email to your future self. I don't remember when mine will be delivered, maybe Nov of 2013, but I told myself how much I hated being stuck in the hospital and how I needed to do everything possible to stay out. Maybe I'll get that email at just the right time in my life...

Allergy update: so we're really still not sure what's causing this, but Sarah and I think it might be a combination somehow of the betadine and one of my medicines. We think this because the rash is almost completely only where the betadine was put on my arm, but it only flares/itches when I have IVs flowing. It's so weird. Either way, I have this prescription topical cream that did wonders for the itching this evening.

I think that's all for tonight. I know I still have yet to get pictures up, but I will soon. Just hang tight!

Thanks for reading, as always.
-Andrea

Hospital Days- Monday

Well!! This post is a lot different than I expected it to be, in a good way! I'm writing this from my couch at home!!!!!!!! (That sentence can't have enough exclamation points on the end of it) Y'all, I'm so excited to be home. So so so excited!!!! I now have my dog home from prison (boarded at the vet) and my afternoon dose of my IV drugs completed. I'm all over this, no problem.

We think I'm actually allergic to the betadine and iodine, not the dressing. But to be sure, we're going to keep using this new dressing and no use betadine/iodine anymore. I have some prescription cream that will help with the rash/itching thankfully.

I will get pictures of my medicines now that I'm home. 2 of them are the imploding balls and one is a bag I have to hang on an IV pole. I also have an extension on the line that allows me to do all of the IVs myself.

Ok I'll keep you updated since I'm just going to just be watching Netflix and playing cards with friends/family all week. Pictures coming soon!

-Andrea