Thursday, July 29, 2010

Pulling myself up by the apron strings...

Have you ever had one of those days when you had to work hard not to feel down? You are able to keep things together through most of the day and then things just sort of unravel. Well, that's where I'm at--at the unraveled end of today.

Woke up today just feeling "off" in body and spirit. Chalked it up to medication and late night teenage drama. The home nurse showed up before I was ready--forgot exactly what time she was supposed to come for a blood draw. Veins didn't cooperate so I got multiple stabs. Never a good thing but I've had much worse.

Finally time for a shower since it's nearly one o'clock. Start to rid myself of the 24 hr. Vanco drip then remember I have no tape. Argh! That's the thing I was going to remember to ask my nurse--I knew there was something. When your iv port is accessed, you must cover it with plastic wrap and tape before taking a shower. And it never fails, I can tape the thing up tighter than Fort Knox and still water seeps in. I believe it is some sort of natural phenomenon that needs further study because how that water can manage to work its way past my unpenetrable fortress of plastic is nothing short of miraculous. So no shower for Sherri today. Instead I have to do what I call "heads and tails." I have to wash my head in the laundry sink and then wash my tail in the tub. Not as efficient or refreshing but it gets the job done.

Needed to get a gift made for a bridal shower tonight but first, car issues and getting my daughter to work took precedence. It all took longer than I wanted it to and I had to sew like a maniac with only food and bathroom breaks. I finished my project in the nick of time--looked up at the clock when I cut the last thread and it was time for the party to start. (Took a quick picture of it before bagging and tagging.) I shoved a taco down hoping to avoid low blood sugar which had plagued me repeatedly through the day and I scooted out the door.

Well, I was stuck with the car which has been acting up and that I really don't drive that often. I was concerned about getting it backed out of the garage since the side mirror is a tight fit. Luckily I wasn't going too fast but fast enough to scrape into the side of my sister-in-law's car. I didn't see it there and it had been parked out on the street the past couple of days since we borrowed it, ironically to rescue the vehicle which I just now backed into it with. Scared me to death! Then just made me feel sick inside. Could have really used a hug at that point.

By the time I finally made it to the event, I was in no mood to party--and as luck would have it, neither was my body. I spent the entire time trying not to cough as my twitchy lungs refused to relax and just breathe. Sweet ladies who meant well kept asking me if I was okay, did I need a drink, etc. So frustrating. Near the end of the party a good friend of mine told me about a funny thing that happened to her today. Danger! Laughing and twitching airways don't mix! Laughing turned into beet-red-face coughing and more expressions of concern. Thanks to my complete spaz, I now had a raging headache to contend with too. I finally just packed it in for the night and headed home for a treatment.

Well, it's late and I'm dripping my final iv of the day. Did a double dose of albuterol treatments and these old breathers are finally settling down. Plan for tomorrow: paste a smile on my face, pull myself up by the apron strings, and try again.

Wednesday, July 28, 2010

It ain't easy being green...

Today was a day I've looked forward to all summer--I ate green beans! And not just any green beans mind you but picked-it-myself-from-my-own-garden green beans. They were simply delicious!

Growing up I thought green beans were instruments of torture invented by mothers to ruin summer mornings. I swear green bean season started in June and didn't stop till after Labor Day and school was in session. And if it wasn't our long rows that needed harvesting then it must be the day to pick Grandma's beans. Argh, the silly things were everywhere.

I hated the whole process. I would be bent over the rows for so long my legs would start shaking. Then I swear my sisters went slow on purpose just to irritate me. And what are green beans made of anyway...Velcro? Every expired daddy-long-leg, dead leaf, and white, weed parachute-thingy were plastered to them. Gross. And earwigs...don't even get me started on those since it's amazing I've made it into adulthood without serious therapy regarding earwigs and my childhood.

And call me sadistic, but I got a small thrill every time I pulled on a bean and the entire plant accidentally came with it. I guess it was my kid way of sticking it to "the man" or more rightly "the bean." I would just tuck the offending plant under the others and keep on going...but now with a sinister twinkle in my eye.

Oh but picking them was only half the fun because there was still snapping to look forward to! Brown grocery bags full of green beans taunted my sisters and I. None of us liked to head and tail them, snapping was much less tortuous, so we would take turns. If Mom helped out, we gave her the pleasure of head and tailing--it was her fault after all.

We even devised a "who got to snap the last bean" game. We would actually hide a bean (or two) and bring it out at just the right moment to be the last one to snap. Strategy was everything. Looking back I'm sure it must have been our sun-addled minds at work.

Now here I am years later celebrating the fact that my garden has finally produced its first batch of beans. My only regret is that I didn't get to torture my own children...with Josh being allergic to anything green and outdoors, and Christina coming into the family at 16 (which is way too old to begin properly grooming her for bean-picking duties) the burden of bean harvesting is still up to me. Love it!

Wednesday, July 21, 2010

Not as bad as I thought...

Yippee! So far so good with the round-the-clock Vanco. I feel just a little tingly under my skin but definitely not anything like Monday. Also the "pump" the pharmacist described as "as big as a dvd player" turned out to be a slightly over-sized spaceball, one of the greatest drug delivery systems ever invented. Mister pharmacist said I would have a backpack to carry it around in and a nurse would come and teach me how to set it up. I pictured a bulky dvd/vcr player strapped to my back over which would be another backpack when I have to tote my oxygen. Can you say Sherpa??!! What a relief when I saw what it actually was.

Now just keeping my fingers crossed hoping there will be no more body malfunctions. No more Red Neck Woman for me.

Tuesday, July 20, 2010

What makes the red man red...?

Well, first day of IV's in the tank but things didn't go quite as planned. After getting my port accessed Monday afternoon, I was ready to drip away on my Doripenem and Vanco. Finished the Dori while watching Food Network Challenge (I know, I was desperate for entertainment) then started the lovely Vanco. Within about five minutes my skin felt kind of tingly but I've been there before so didn't think too much of it. Then noticed my hands felt hot and itchy...weird...but I keep going. Well about 3/4 into the dose, my scalp starts itching. Now, I think I am psyco woman since whose head itches like that! Medicine done. I look in all the obvious places for hives--yes, I know where those are from past experiences (back of knees, waistline, elbows)--nothing.

Fast forward to midnight. I am watching my daughter's netflix pick, He's Just Not That Into You, (Critic's note: Movie showed flashes of brilliance but fades away into mediocrity) and I start my Vanco drip. Same things start to happen. I finish the crazy thing about 1:30 a.m. but by now I feel like my face is on fire. I go truckin into the bathroom to take a look and yes, gasp, I am bright red. My face, neck, and chest are covered in a red, hot rash. Lovely.

So I open handy dandy folder provided by med supplier and look for my info sheet on Vancomycin. Generally speaking, I don't make a habit of reading all the warnings which accompany my meds since I am a slightly nervous person and don't need suggestions on creative ways to freak myself out--I am perfectly capable of doing it myself. But when I see "Seek Medical Help Immediately If You Experience" with my symptoms listed afterward, I do the next logical thing--wake up Rheid!

After speaking with the all-night pharmacist and reassuring her (and myself) that I wasn't having any trouble breathing, she instructed me to take some Benadryl and discontinue the medication. Meanwhile, Rheid is now sufficiently conscious and is looking up my symptoms on the internet. Yep, he found it. I officially have Red Man Syndrome.

Vanco, what were you thinking??? I thought we were friends but you've turned on me. Now our relationship can never go back to the way it was before...sigh.

Well, to make this longer-by-the-minute story short, the clinic is now going to have me try a continuous 24 hour drip of the stuff. Like if I had a life? Not sure how this will work except that I disconnect 3 times a day to do the Dori is all. They hope I can do it without Benedryl--so do I since the stuff makes me sleepy like no other. They even offered me an invitation to join them at ClubMed, but I declined.

So for now, I wait for new and improved supplies to be delivered tomorrow and try to think only positive, non-itchy thoughts. For now I know, what makes the red man red.

Friday, July 16, 2010

IV's I've missed you...not

Yes, it's now official, my elevated white count paired with my bleed means IV's start on Monday. Got the call from my CF nurse this afternoon. Since I hadn't been to clinic since October, the staff thought I would be worse. But I showed them, with my FeV1 at 33% which was up from 31% last time I was there. Not that 33% is much to brag about--it's not, it stinks--but at least I haven't lost any ground these past nine months. It just goes to show you that everything truly is relative.

When my wheels started flying off the end of 2008, we did the lung embolization and the sinus surgery to hopefully pop me back up into the 40's where I had been for quite some time but had recently slipped into the upper 30's. A rebound to the forties was definitely a do-able thing and I felt good about my ability to do it with my newly tuned-up and tweaked body. But then I got MRSA and I plummeted into the 20% range. Not the wonderful upward spiral I was anticipating.

So now here I am celebrating 33% and hoping to maintain there for a very long time. All you need to do is feel the lower numbers to know that things can be worse and even though you aren't where you wished you were, where you are isn't that bad of a place.

My iron level is very low--like I knew it would be. The problem with doing iron supplementation besides the obvious slow down in the flow of things (if you get my drift) is that pseudomonas loves iron. So you introduce a bunch of iron and you might as well invite the pseudomonas bacteria over for a party. But my low iron levels are giving me restless legs, particularly at night. It's actually more like restless body since both my arms and legs get into the act--causing me to not sleep well and driving my husband crazy.

I know in the grand scheme of things restless legs sound kind of lame, but when you are still trying to fall asleep and it's 3:30 in the morning (and this scenario plays out several times a week), lame is the nicest word you can think of to call it, believe me. When I mentioned the problem to Dr. Nick, I felt so relieved when he said that restless leg syndrome was being recognized as a problem with a portion of the CF community and that they are doing more investigation into it. Yippee, I'm not a looney tune.

So IV's--bring it on. Although you will make me feel like a wrung out washrag for two weeks, I will win in the long run.

Monday, July 12, 2010

Careful what you wish for...

Just this morning I was wishing I had something exciting to blog about since things have been a bit on the slow side here. Curse the thought. Boring is good--boring is our friend. When will I learn.

Soooo, I was innocently making a late lunch in the kitchen when I coughed and felt an all too familiar flutter in my throat. Yep, my old nemesis hemoptosis (bleeding from my lungs) started. Seriously, I was planning on calling the clinic today to set up an appointment for next week to show them how good I was doing. I haven't been to clinic since October so when I call in for refills , I have to keep promising to make an appointment soon.

Since my lung embolization at the end of 2008, I haven't had any serious bleeding issues--just a few streaks here or there, no biggie. So today's nonsense threw me for an emotional loop. It's been so nice not feeling like there's a time bomb ready to go off in your chest any minute. And I realize that this wasn't nearly as bad as the times that put me in ICU...but it is the principle of the thing. I wanted my lungs to realize that bleeding was no longer an acceptable way of acting out.

Now I got fast-tracked into clinic on Wednesday and I'm sure I will be sporting an iv at the end of it. I know I shouldn't be complaining since last year I would have killed to have gone longer than 2 to 3 weeks between iv's--what I lovingly call the Debacle of 2009. I just wanted my mini-miracle to last a little longer, say like forever maybe. For now I guess I will have to be happy with a round of iv's and then hope for a mini-miracle sequel. That would be a good thing to wish for!

Wednesday, July 7, 2010

Sherri and Julia

Just finished watching Julie and Julia tonight with my convalescing husband--loved it! (and him too!) Can I just say I want to be Julie??!! Not in the cook-all-524-recipes-in-365-days way but in the write-a-blog-about-your-passion-and-become-famous-in-the-process way. Now the hard find a passion.

I love family history/genealogy but no one but my living relatives care about my dead ones--not getting famous there. I am passionate about cystic fibrosis but cf 24/7 can be quite the downer--depressed readers aren't happy readers (and depressed writers --well, don't want to go there.) I like to quilt but passion is a bit overstating it. I love to read but don't want to become a book critic blogger. What to do??

I guess, my 12 beloved followers (plus I'm sure the hundreds more blog-stalkers who love living in anonymity) you will have to put up with random ramblings until I decide what I want to be when I grow up. Then you can say you knew me when...

Friday, July 2, 2010

New Lungs for Pam

Just heard Pam got her call yesterday for her new lungs. She made it through surgery and I am still waiting to hear how her recovery is progressing. Many prayers are focused on her and she is in Heavenly Father's hands. Go Pam!