Skip to main content

Cayston in Dallas

I failed to mention in my previous post that it is time to start my next round of Cayston.  I started on Saturday morning, right before our dog walk.  I will post some pics when I get home from Dallas - got a super cute one of Sophie in her Paws for Pink bandanna :) 

I was going to put off my Cayston a week since I was heading to Dallas and it isn't nearly as convenient doing my treatments here as when I'm home.  Most people I work with have no clue about my CF and I don't really feel like having to go through explaining it, so I do a treatment in the morning around 7:30 am before I head out to the office.  Then, I rush back at the end of the day (usually between 5:30 and 6 pm) to do my second treatment.  And my final treatment is right before I turn out the light for bed (which seems to be pretty early - I try to stay on Eastern time so I don't get too messed up).  But of course, I allow at least a 4 hour window from my second and third treatments.

I've had some weird symptoms since I've been in Dallas.  Don't think its the Cayston (at least I hope not) but my whole body just ached last night when I was going to bed.  I hardly slept - I'd wake up every 30 to 45 minutes - just miserable.  Then, of course I'd think about work and all the things I needed to do which stressed me out and made it hard to get back to sleep.  Then, this morning, I almost called in saying I would be late, but I knew I couldn't do that.  My back just ached and I felt nauseous.  Luckily a lady a work gave me some Aleve and I felt better.  Maybe its the Pei Wei I ate last night?!?!  Just hope it doesn't happen again tonight! 

But, after my second Cayston treatment today I started having a sore throat...oh joy!  I hate traveling and being exposed to all these germs! 

Well, gonna go read a bit more while I watch Dancing with the Stars!  I'm cheering for Hines!!! 

Comments

Popular posts from this blog

SmartVest Review & CF Appointment

Well, here is the long awaited official review of my new SmartVest SQL.  I don't have any current or updated vests to compare this too, so my feed back is based upon what I like/dislike versus the old and out-dated vest.

Pros:
Weight - it is MUCH lighter than my ancient Hilrom Vest.  By all means, it isn't light but definitely a great improvement from my older model.  I can at least carry it myself!Comfort of vest - the fabric is much softer and less scratchy when wearing it.Technology - it has a digital screen, so I can set the time and know for sure how long I'm using it (the old one had a knob to turn).  Also, I can set different programs based on how long I want to use it, etc.  It's quieter!!  Will still doesn't enjoy watching TV with me while I vest, but I don't have to turn the TV to its max volume!  And, the dogs aren't scared of this one as much!There is only 1 hose...so I'm not tangled up :)And it comes with a rolling case (that looks like a re…

CF Updates

Greetings friends!

I had the pleasure of going to my quarterly CF appointment on Tuesday.  It was originally scheduled for 11/15 but being that my sinus funk is still lingering around, I wanted to move it up a bit.  (the original funk started here)

I finished my round of Cipro on 10/29.  And still had a head full of congestion, sore throat and ears. Bummer.  I thought I was starting to feel better for a split second, but it didn't last.  Thankfully, my lungs were still feeling good :)  We were at our cabin in WV that weekend and I skipped my vest and HTS, but thankfully didn't suffer.

So, I headed in to the doc on Tuesday.  My PFTs are holding stable so that makes me happy!  More on that in a minute.  During my exam, she could see there was still fluid in my ears along with my red throat.  Plus my face was super puffy and my eyes felt as if they were going to pop out of my head.

So, the plan of attack is this:

1) Take Levaquin 750mg for 14 days
2) Get back on my Claritin dail…

Feeling Good Guilt

Having Cystic Fibrosis is not something that consciously crosses my mind on a daily basis.  I take pills and do breathing treatments throughout my day, but I just do them out of habit.  I don't sit down to eat a meal and say, "oh, I have CF, I better take my enzymes".  Instead, I just subconsciously walk to the cabinet and pull out the bottle, or if I'm out to eat, I reach in my purse and grab them.  It's just like brushing my teeth before bed every night.

While I know I have a disease that is incurable.  I find myself just living life and doing the many things that I want to do.  While this seems well and good, it's also unfair.  There are other CFers fighting for their last breath, waiting for a second chance at life with a lung transplant, or being hooked up to an oxygen tank and dragging it with them wherever they go.

I often tell people that I am a bad example of CF.  When explaining CF to someone, I talk about the deterioration of the lungs, challenge…