Skip to main content

No IVs for me!

No IVs for me, thanks!

First off, Let's clap, BECAUSE it has been 2.5 years since I have needed antibiotics, oral or IV (other than my bi-weekly dose of zithromax). Literally, I have not been ill enough to see my doctor in 2.5 YEARS! That's amazing. I used to get really sick every couple months, but thank goodness, that hasn't been the case. Although I have been working my butt off these past two years to get healthier, guess it is working.

BUT...
I was really nervous Dr. B would throw me in the hospital because I've beeen sick for a week and lost quite a bit of weight. However, he is having me take Cipro instead! I'm taking the usual (for me that is) 1,500 mg daily for two weeks! If I'm not feeling better & eating better by Saturday, he is going to add prednisone;Which I have never taken before. My mother was on an extremely large dose after she went through Chemo for a while and seeing the side effects kinda freaked me out a bit, but my dose will be small. And I trust Dr. B will mske great choices, other CFers have discussed prednisone before online, but my old doctor never brought it up. Not sure why.

Anyway, I'm hoping I will feel better by Saturday and not have to add that to the already 20 some pills and 10 nebulizers ( and he wants me to to do 3-4 more a day, so 13-14 nebs) that I do each day. At least I'm done with Cayston and I'm on Tobi now.

Note: I do Cayston one month and Tobi one month. I alternate them, but Cayston is 3 times a day and requires a different neb machine. Its quicker to do the neb, but the cleaning and 3 x a day routine makes it harder to fit them in. With Tobi, I can do it before school and after I come home from whatever I'm doing. Which means I only have to take albuteral and hypertonic saline and that machine with me during the day, no traveling  refrigeration needed.

Since I haven't felt good lately, I have been slacking on cleaning, and I'm a VERY organized (neat freak if you will) person. My beds haven't been made in a week, my dirty clothes keeping piling up in my basket, and I haven't vaccumed, dusted, swept, ugh.  I want to get this done this week, so I can finish decorating for Christmas!

I have a TREE this year. Since I rent my duplex I wasn't sure if I could bring in a real one, so I bought a fake one last year on clearance! I'm sooo excited to put it up!

Comments

Popular posts from this blog

Clinical Trial, lung function test, and Crohn's diease

Clinical Trial, Clinic Today:   Clinical Trial 9am: Today, I went back to Dr. B's office for the clinical trial evaluation and start of trial. My last evaluation was a mess and I was not too happy with it ( Read about the first trial evaluation mess here! ) Luckily, we doubled today with my CF Clinic. It was a long day 9am-2pm in the office. BUT, good news is I'M ON THE TRIAL! It's not a new drug. I'm just doing the two meds like I always have (unless I get the placebo). I love being a part of clinical trials! The thought of helping drugs be approved that can help our health or even get approved by insurance easier! In the past I did a Clinical Trial for enzymes (that was a horrible clinical trial). I had to collect my stool in buckets and mail it to the lab...EW. But, it was to help us digest food better. AND now I'm on Zenpep, which is a fairly new enzyme and it does wonders for me! I did clinical trials also for Pulmozyme and Tobi too! So excited to get involv...

A Simple Hug

I'm a hugging type person. In fact, I have a couple friends that aren't big on hugs or any kind of public displays of affection. However, they usually bring the bubble barrier (as I call it) down to hug me good bye. I'm also super extroverted and LOVE to hang out with friends.... Therefore, not being able to see my friends (with CF) in person drive me nuts. A lot of people (in society) don't realize that people with CF cannot be around each other. This is due to the bacteria we colonize in our lungs. It doesn't affect non-CF individuals. But, as we come in close proximity with other people with CF those bugs spread and continue to damage our lungs faster. We fight off the bacteria with antibiotics, but when I was younger we didn't have many options for antibiotics (especially nebulized). This meant we could not eradicate the bacteria and were stuck with it in our lungs for the rest of our life. The more bacteria we culture, the faster our lungs are damaged, t...

Would 20 big Macs help?

Big Macs huh? I've had a couple customers at work mention things like " you're so skinny, you probably could eat anything. and still look that way."  Which I always just respond " yep, I guess I'm lucky" But I always think... Lucky.. lucky. yep I'm lucky I'm struggling to stay above 90 lbs right now. I have a stomach tube in me, have had it for 12 years and will have it for the rest of my life. I'm supposed to eat at least 4,000 calories a day. But I also have to fit in exercise to keep my lungs active, plus make up for all the calories that I burn. I get easily tired and if my weight drops suddenly it usually means I'm sick again. But since I'm skinny, yep I guess I'm lucky (rolls eyes). I hate telling people that I'm lucky. I'm not lucky when it comes to weight. Here are some phrases I hear that drive me nuts: - I'm lucky cuz I can't gain weight - you need to eat to put some meat on those bones...     ...