When did Cystic Fibrosis get here?

I know Ginny was diagnosed when she was 3 months old. It's a genetic disease, thus determined from conception. Before we knew it was CF, there were many tests done while in the hospital to figure out why she wasn't gaining weight, had anemia, vitamin E deficiency, etc. Once diagnosed and on the correct meds, things improved and life settled in.

Over the years, Ginny has had colds, coughs, strep, ear infections, etc. Those have been easily resolved with anti-biotics. Her lung function (PFTs) has always been in the 107% - 118% - ideally, you want your lungs to function at 100% so she's been in GREAT shape!

Ginny's weight was a struggle until they introduced us to "the hungry pill" (don't remember the medical name). The goal was to have her BMI above the 50th percentile. She was usually no higher than the 20th until that medication. They had started hinting at a G-tube, but we told them to come up with something else. They did. Within 4 months of being on "the hungry pill", her BMI% shot from 21% to 49%.

Don't get me wrong.....we've had our stressors and struggles with all of the appts, meds issues, germ warfare, insurance, trying to gain weight, trying to kick colds/coughs, etc. But, after the initial difficulties, we settled into daily life with CF......

...... That is, until her PFTs dropped to 89%....... we upped her meds, increased nebs, added Cipro and were to return in 1 month to check again............ they dropped to 81%...... *THUD*.....

She was admitted to the hospital -
She was in for 1 week of IV anti-biotics, respiratory therapy 4x/day, Chest PT 3x/day, and food galore. Just as she was finishing breakfast, snack would arrive - when that was done, lunch was delivered and all meals/snacks were wrapped around all of the other therapies. She has come home with a PICC line so she can continue the IV anti-biotics. There are 4 per day and we had to really schedule things carefully to fit them in with the proper spacing between - not to mention that thing called school, maybe even life.


Guess I can no longer live in my happy, little denial about CF. It's always been there, but now it's sitting at the table.

The 24-Hour Whirlwind - The Taming of the Dew - Part III

*BEFORE READING THIS, PLEASE SEE "THE 24-HOUR WHIRLWIND - THE TAMING OF THE DEW - PART I & II" - IT WON'T MAKE SENSE WITHOUT THEM*
Okay, I haven't done this in forever, but I need to close it out so I can blog about all the other stuff going on.

When last we left our heroine, there was a phalanx of men with tools - ripping, sanitizing, examining, evaluating, and itemizing. Over $3,000 had already been spent and estimates were being calculated by the thousands. Troy, the sewer technician, was estimating the cost of ripping out 1-2 dogwood trees, tearing up a portion of the cemented, tiered walkway, and digging down 10-12 feet just to get to the pipe which needed replacement - with a minimum price tag of $10,000. Alan, the BGE guy, was pricing the replacement of a compressor (the most expensive repair possible when an a/c goes kaput, but he might be able to get it under $3,000).

On to the FINALE:

There I was, waiting for another $15,000+ worth of repair estimates to be thrown at me. Alan, the BGE guy, came in after having spoken to his warranty/parts department. Tim, the Servpro guy sanitizing my basement, was coming up the stairs at the same time.

HERE'S where things REALLY get crazy............

Alan tells me that the previous owners DID get the extended warranty. The replacemenet of the compresser would be done at NO COST to me. That means, the potential $3,000 a/c repair has ended up as a $0 estimate. He came in and made this statement aloud. There would be NO COST to repair my a/c. I looked at Alan, admitted that I didn't know him that well, but that I really wanted to kiss him. Tim from Servpro, who had just charged me $2500 to rip the crap (literally) out of my basement, just looked at him. Tim's response, "Great. You make the rest of us look bad.".........fer sure!!! Alan's big-ass repair was going to cost NOTHING!

*whew*

Troy came in after examining the option of destroying my front walk, 2 trees, and digging a 12-foot trench in my front yard. The look on his face was very confused as he told me that he thinks his machine was picking up my solar lighting features. He took the search for the underground beacon out to the backyard. Lo, and Behold........... the sewer line went out the back of the house, past the walk-out portion of the basement. The pipe was right next to the foundation of my deck, but the cost went from $10,000+ to just under $5,000.

*Wow!*

New estimates:
A/C repair = $0 rather than $3000
pipe dig-up/replace = $5000 rather than $10000+
downstairs devoid of sewage = priceless

OMG - I really have to blog

I really should have been blogging over the last 2 weeks while I've been relaxing out here in Northern Idaho.... sitting on the deck, looking at the lake, looking at the mountains surrounding the lake, watching the Osprey pluck fish from right in front of our dock, watching 2 Osprey chase down a Bald Eagle.......
Hmmmmmmm........
Maybe that's why I didn't spend the last 2 weeks blogging. It was too, too perfect to do anything but sit back, relax, and enjoy!
*sigh*
Tomorrow is our travel day. Over 12 hours of a combination of security checks, flights, layovers, baggage claim. Won't be fun, and the weather will be barbarically hot when we return, but we will be home. I will have some time to blog before my next life adventure begins. I've got to finish up my "really crappy day" story, and do some catch-ups here and there. I also have some profound thoughts to ponder.
SO.......I'll catch ya after we return and I've had time to smooch & snuggle with my pups!
C'ya!

The 24-Hour Whirlwind - The Taming of the Dew - Part II

*BEFORE READING THIS, PLEASE SEE "THE 24-HOUR WHIRLWIND - THE TAMING OF THE DEW - PART I" - IT WON'T MAKE SENSE WITHOUT IT*

So, the Friday craziness continues. Quick Recap: Brad the Plumber snaked my sewer line - $550 and Tim & Israel started cleaning up the aftermath once I paid $2500 up front....they gotta have payment up front because they aren't offering a product that can be re-possessed....and it's not like they can shoot your crap back into your house.

So, the next one to arrive was Troy. Troy is a Sewer Technician with myPlumber. He brought the camera to snake down the sewer line to confirm it was all cleared out and see if there were any tree roots or blockage. He fed the camera down the line and had a portable screen. Tim (from Servpro) and I couldn't help ourselves....we had to watch. I mean, how often do you get to see the inner bowels of your house. With fascination, Tim and I looked at the screen as it made it's way through the pipe. It was just a pipe, nothing interesting ...then.....EWWWWWW....... we both looked away as the camera came upon some messy stuff. Tim suggested that we stop watching, I agreed :).

Tim & Israel continued to soak up and sanitize my basement. Troy came up to announce there were tree roots in my line and that it was 90% blocked.... the roots were like fingers just waiting to catch anything that came by. The camera has a beacon on the end of it which was left at the roots while he took a machine outside to pick up the signal. He did this so they would know where to dig to get to the pipe to replace it.....GREAT! That won't be expensive or anything!!!

Remember that I originally stayed home on Friday for my A/C to be repaired? Well, while Troy was outside and Tim was going in and out of the house as he disposed of items, Alan from BGE Home arrived. When I explained that the A/C was tripping the breakers whenever it turned on, he expressed his hope that it was just a short somewhere and not the compressor. Thanks....I really need to worry about THIS worst-case scenario, too! Whatever!

Within the first 5 minutes, Alan was able to tell that it was the compressor which led me to share my sob story with HIM! Wow....he said....yes...Wow... The compressor would be a few thousand to repair. Because I have the service contract with them, labor would be free and I would get a discount on parts which could drop it closer to a couple thousand....great, thanks! Alan asked if I had the warranty information on it because most systems come standard with a 5-year warranty. No, I don't have that information and I've lived here for 7 years and how do I find out how old the system is and if an extended warranty was purchased? (Because I needed one more thing to research and make calls about right now). Alan told me that he would call the service department, find out any warranty information, and get the repair quote...might take about 15 mins....Okay......great.....I'll miss you while you're gone....... *sigh*

While Alan was in his truck racking up my next bill, Troy asked me to come out front to talk about my tree roots and his findings. Along the walkway to my house are 2 dogwood trees. There's some sort of water main type thingie to the left of them. Troy told me the beacon was responding just under the dogwoods...... that would mean the pipe is coming from my basement out the front of my house which is not a walk-out. That means the pipe is about 10-15 feet down and to get to it, I would lose 1, maybe both dogwoods...... this would be a 5-digit job....ummmm...that means $10,000 or more....... GREAT!!!! I had just spent over $3000 on the snaking and the clean-up and I was informed of my layoff less than 24 hours prior to this...... what's another $10k......, along with the pending compressor estimate.......... THAT'S IT!!!!! I can't do this anymore....I just can't do it....I can't afford any of this.... I wish I lived somewhere else!!!!!

But, I don't! I live here, and it is mine to deal with. So, I shall deal....*breathe*

*TO BE CONTINUED*
Please....bear with me....the fun stuff is yet to come....really.... I promise....this IS a sitcom!

The 24-Hour Whirlwind - The Taming of the Dew - Part I

*BEFORE READING THIS, PLEASE SEE "THE 24-HOUR WHIRLWIND - THE MORNING DEW COMETH" - IT WON'T MAKE SENSE WITHOUT IT*

Friday, April 9, 2010 was quite the adventure! I had so many men rolling through my doors that it MUST have impressed my neighbors!.... either that or generated TONS of sympathy!

My first man of the day was Brad, the plumber. Brad arrived with scary, crazy-loud equipment to snake my line...... I really don't want to know too much about that! Upon hearing the story of my previous 24 hours, he knocked 10% off the price of the "sewer-line snaking". Thank you Brad!!!!
While Brad was here, Tim and Israel from Servpro arrived. Now I had TWO service vehicles out front of my house. They instructed me and my brother (okay, mainly my brother because my head was swimming in all of the crap...) to begin removing everything from the storage area.....EVERYTHING??!!?? Do you mean 7 years worth of storage and junk that I just kept dumping in there??? Time to clear out all the junk I'd dumped since my sewer line decided to take a "dump" on my stuff.. (actually, it didn't take so much as it gave!). Items from the damaged area which had not been in contact with the contaminated material would go into the finished area of the basement which had been spared. Sewage soaked items were escorted outside.
As I finish up and pay ($550 on credit card!) Brad's work, Tim was surveying the poopy damage with Israel and determining the course of action....and the cost!!! Brad left with the promise that a camera crew would be coming out to run a camera through my line to see exactly what/where the blockage was. GREAT!!! A whole-house colonoscopy! Pretty!

So, I call the insurance company to update the claim submitted the night before with the additional "crap".....BTW, in case you hadn't caught on, there were so many "crap" jokes flung around that day, it was a "stinkin' " riot!!! While I'm on the phone with the insurance company, Tim from Servpro tells me that he needs to speak to them so he can get approval to begin the work. No problem, I've got her on the phone so this would be the perfect time.....NOT!!! She tells me that she can't approve the clean-up because she doesn't know if the blockage was in my line or beyond mine and into the county. WHAT??!!?? My basement if full of water and sewage....visible sewage.....I'm supposed to wait for the whole-house colonoscopy??? That wasn't going to happen for about 4 more hours.........and my house STINKS!!!!! Sewage en masse in an enclosed area is not very pleasant....

Here's the deal with Servpro.......they won't begin the clean up until there is insurance approval or payment up-front....and my insurance wouldn't approve it...and I'm broke and have just been laid off.....Sometimes, life is priceless...thank you MasterCard.... Heck! What's another $2600? ...... Put that on the credit card since the insurance company won't fight for me as I put in a call to Brad - myPlumber..... He calls back and I tell him that I had to pay Servpro upfront so they could start the work and my insurance won't cover it unless the blockage was on my end, not the county.... "No problem" says Brad. "Have the adjuster call me and I will confirm the blockage is on your end"........... Again, Thank You, Brad!!!!

In the meantime, since I'd handed over the plastic and signed off my life - Tim & Israel put a plastic tarp down across the floor of the basement's finished area from interior door to exterior door. Love them!!! We could haul my "crap" outside without dropping it in the "clean" area!

*TO BE CONTINUED*

The 24-Hour Whirlwind - The Morning Dew Cometh

*BEFORE READING THIS, PLEASE SEE "THE 24-HOUR WHIRLWIND - THE DAY OF" - IT WON'T MAKE SENSE WITHOUT IT*

So, after cleaning up the sewage spew of the previous evening, I was first on the list for the plumber on Friday morning. Before Drew left for the day, I asked him to take a peek at the basement to see if there had been any further sewage flooding. Ummmm..........................

*MORE BAD NEWS*

The landing, powder room, and ENTIRE laundry/storage area was a puddle of water & sewage....ah Poop! The toilet had erupted a sewage volcano. How did I get SO lucky!!!
My A/C broke, I got laid off, and there was Lake Poopy in my basement.
Work from home/Air repair day had turned into mourning the loss of my job and wallowing in crap. I had more men coming through my door than a sorority house on a Friday night, only none of them were drunk.
The day began with a 7:00am call to myPlumber as I was already first on the list. When I explained the situation had gotten worse, they were VERY sympathetic and helpful. They asked if it was something I could clean up myself or would I need a water mitigation company.....a what?? They work with Servpro and would call them and get the ticket started for me. THANK YOU!!! Nice! One less call I had to make.
The best call I made that day was to my brother. I asked for help.....I'm not so good at that. When I first called him he asked me what I needed him to do. I couldn't tell him....all I could say was that I had no A/C, was losing my job, and had a basement full of crap. I didn't know what I needed except to call the plumber. After calling them and realizing that Servpro would be coming out to rip up and clean out my basement, I knew what I needed. I called Charles back and asked if he could come over and help me move my belongings out and go through damaged items. My brother took the day off work to come over and slosh through my basement, help with the physical moving of my belongings, but mainly.... I needed him for me, to be the stability, the person unattached to the possessions, the person who could answer questions when my mind had enough. He was all that and more. It was as though he picked me up and carried me around in his arms that day......and we had a really great time together! I know that sounds crazy considering all that was going on; but, because we were together, I was able to laugh through the tears, stress, and the crap that was consuming my day.

*PLEASE STAY TUNED FOR THE NEXT CHAPTER IN "THE 24-HOUR WHIRLWIND"*

The 24-Hour Whirlwind - The Day Of

*BEFORE READING THIS, PLEASE SEE "THE 24-HOUR WHIRLWIND - THE CALM BEFORE THE STORM" - IT WON'T MAKE SENSE WITHOUT IT*

Thank goodness for my service contract with BGE Home, they told me they could come out on Friday, and it would not cost me a thing to have the problem diagnosed. They would do the annual inspection and cleaning at the same time which might fix the problem. *Awesome!* Wouldn't that be great! Thanks!!!!

I put in the request to work from home on Friday so I could wait my turn for the tech who would arrive at some point between 8:00 & 5:00....way to narrow it down! A rather sympathetic understanding of the need to address the situation led to the approval of working from home. See, I work with people that have also had the pleasure of "home-ownership drama". It just sucks, and we all know it! I went to work knowing that I didn't have to worry about the A/C for the day. I could put it aside, and know that it would be waiting for me to deal with on Friday.

At least I could focus on work.......not so much! The afternoon of Thursday, April 8, I was told that my grant ended in November 2009 (which I knew), and there is no further funding for me (which I didn't know, but was scared of). My contract that goes through June 30, 2010 will not be renewed. My skills, and the things I do are not a fit for the work needed to be done. There aren't enough full-time, project-manager level tasks to justify my employment during times of budget cuts and lost grant funding.
I DO NOT HAVE A JOB PAST JUNE 30, 2010. Well, that sucks!

Sucks though it may, I didn't feel the need to throw myself on the floor and cry, panic, scream. That was a bit more energy than I felt needed to be expended. Good thing I held back.....

When I got home, the kids told me that the downstairs toilet had backed up which led to a water/sewage flood. When you walk downstairs, there is a landing/foyer area, with a powder room straight ahead. To the right, behind a closed door is the finished basement. When you go down the stairs, to the left, there is another door which leads to the laundry room and storage area. Sooooooooooo............ the sewage back-up was in the powder room, foyer, and a portion of the laundry/storage area.

WOW!!!!!!!! My A/C busted, I got laid off, and came home to shit in my basement in less than 24 hours...........now that's a bummer of a day!!!!

*PLEASE STAY TUNED FOR THE NEXT CHAPTER IN "THE 24-HOUR WHIRLWIND"*

The 24-Hour Whirlwind - The Calm Before the Storm

In our lives, there are certain events, or series of events which suck. They are upsetting, stressful, ridiculous, etc. Some of these incidents cause friends to say, "well, you'll look back at this in 5 years and laugh". But, have you ever had a series of events occur in a 24 hour period that would be too much to handle over the course of a year?

Well, let me tell you about a 24 hour period that was so full of shit that you won't believe me. You literally will not believe me! You will think I'm exaggerating, embellishing the truth, or flat out lying. I assure you, my friends, the following is all true. No creative license has be taken to embellish the truth.

After being pounded with chains of blizzards and feet of snow, the Mid-Atlantic region broke yet another weather record. We broke the high temperatures last week by getting into the 90s in early April. It became ghastly hot on Tuesday, April 6th. I had not used my heat in a month and wasn't even CLOSE to ready for the air conditioning, so I refused to turn it on. I put on a fan and peeled off outer layers. I made it through the night, and toddled off to work the next morning feeling proud of my success. Wednesday was another ghastly hot day. When I got home from work, it was 80 degrees in my house, and the afternoon sun was beating through the windows. On Tuesday, it had been just me, but the kids were home on Wednesday.

When the temperature got up to 84, I broke and turned on the air conditioning (henceforth, to be referred to as the A/C). A cool-down was forecast for Thursday evening and Friday so I knew we would be able to head back toward saving electricity for the good of the planet, and my big-ass electric bill.

About an hour after turning on the A/C, I noticed that it didn't feel much warmer. Checking the temperature revealed that it was still 84 degrees. My wonderful son, Drew, checked the fuse box and reset the breakers for me. Thank God that was an easy one.....But, Wait!!!! No, the breakers tripped every time the A/C went on. That was one HOT night! Fans and light clothing wasn't really enough.....little did I know this would be the least interesting, stressful, or difficult thing that would happen to me in 24 hours.

---

*PLEASE STAY TUNED FOR THE NEXT CHAPTER IN "THE 24-HOUR WHIRLWIND"*

The Big F-U

Yeah....F-U....I said it, I meant it. Sometimes, there is no other option. There are days, times, incidents, issues that just warrant an F-U. Right?

They annoy, stress, push, frustrate, or maybe even scare you; so, the F-U must be pulled out. It doesn't matter who else is involved, or who else is around. The F-U may be caused by family, friends, co-workers, boss. Everyone ends up getting an F-U at some point, and most of the time...they really deserve it!!!! You may be worried that you could get in trouble for pulling it out. But, you might find that everyone else wanted to put it out there and just didn't have the "oomph" to do it. Taking that initiative may actually change others' opinion of you.

Don't act surprised, don't act mortified, disgusted, uncomfortable. Close that slack-jaw!!!! There is nothing wrong with telling some that you may need to Follow-Up. Never be afraid of the F-U, it might just make your day!!!!

Are You There, God? It's Me, Helen.....

So, I'm beyond the point where my friends have all started their period or I must increase my bust. But, why hasn't Judy Blume come up with the follow-up (other than "Wifey"), and created a guidebook for future phases of life.

And, what about the authors of "What to Expect When You Are Expecting"? What happened to the follow-up versions, "What to Expect When They Are Out"?, or "What to Expect When They Talk Back"?, or "What to Expect When They Grow Up and You Wish They Needed You As Much As They Used To"?......

So, do I have to do this myself? Hmmmm.....my sister is an editor/publisher/author advisor....etc. Mayhaps I should propose this? I can even add in the aspects of dealing with IEPs, 504s, Docs, medical thrills......I've got some personal experience and educational background there.

Regardless.......Please, please, please God....... don't turn me into the parent of teenagers.

They are out there....

There are so many of them. They're all over the place. Some are far, some are close by. They are floating all around me. Zipping by before I can really take a good look, then coming around again, they change...evolve. Some of them fizzle before they even have a chance. It doesn't mean they shouldn't exist, just not right now. Rebirth, regrowth, renewal....always being replenished.

They are out there, just waiting for me. Motivating, overwhelming, frightening, exciting.... they are my dreams, ideas, hopes. As long as I keep my eyes open, there is opportunity for me to see them, catch them.... even if they are only visible to me.

Well, it did something....

Ok, so my previous post was about "how to and what would" motivate me to do something about my weight. I thought maybe I would need to post a picture of myself in workout clothing for the world to see, post my weight, cry and say I want to do this just as they do on The Biggest Loser. I decided not to do that. Actually, I didn't really decide to do anything. But, I have tried something I've been thinking about for some time.

I've got a lot of shows on TV that I like. I Tivo them so I don't have to watch commercials or so that I can watch those that I would miss. I love Reality TV and catch almost all of those. I like the evening dramas, too: Brothers & Sisters, Housewives, Grey's, Private Practice...well, you get the idea. I like TV. I do multi-task when I watch TV. I'm usually doing something on the computer. But, there are times that I'm just piddling or playing around on the computer. I don't HAVE to be on the computer. So, I wondered what would happen if I put a condition on my shows. I can watch them from the recumbent bike. Not all of them, although I'd probably lose 50 lbs in 2 weeks :).

So, 4 times since my Tuesday blog, I watched a show from my bike. It was actually pretty easy. During one of the shows, I did 40 minutes. I don't think this would work as well while watching a soap opera, or Rachael Ray. Those are slow-paced. I have been doing it through shows like Castle, and the Forgotten....those can be intense, exciting, fast-paced, even a bit of ass-kicking being done. Now, THAT'S how to get pumped! So, rather than mindlessly watching TV, I am mindlessly riding my bike....while watching TV. Not so bad. A friend gave me a good tip and suggested that I not make a goal of "X" mins per day, but "X" mins per week. That way, I won't feel like a failure if I only do 15 minutes one day. I still did something toward my goal of 100 minutes per week.

THINKABOUT: Do I love it? Nope! Do I hate it? Not really. Can I do it? Well, I am right now. I'll take that for what it is and keep trying.

How did this happen?

How did I get so heavy? Well, I mean....I know how it happened.....so, maybe I should be asking myself why? And, why can't I get myself to stop? At least I have stopped gaining weight...it only took 3 years and 50 lbs. I've quit some bad habits, but added others which is how I got here.
"Two Roads diverged...." Robert Frost
Why didn't I take the other one? Well, I can't change what I did. But, I really should try to see if I can find my way back to that spot rather than just sitting on the large bottom that I have given myself.

So..............
I'm watching The Biggest Loser because I'm a Reality TV junkie. The big question was whether or not these folks would get up in front of the family, friends, and community with their shirts off, and bellies hanging out as they stepped on the scale and announced their starting weight.

What I really should do is challenge myself. I should post a picture of myself in shorts and a cropped workout tank along with my starting weight. Will that make me do anything about it? Is that motivating? Would people support me, or just kind of let it go because they don't want to embarrass me? I could even allow myself to watch my favorite TV only if I'm on my recumbent bike. I wouldn't have to go fast and furious.....just go, at this point!

Well....I'm going to think about this.....yanno.....weigh my options (OMG, I am funny!). I'll let you know what I come up with.