What kind of Dragonfly is that?

Can you guess what this is? A dragonfly? Another species!? This is called a Power Port Needle. It's what I've had in my chest (upper right subclavian) for the past three weeks. I can't tell you how GOOD it feels to have it OUT of my chest! After my last does of IV meds this morning.... I pulled it out and took the first, real, hot shower in weeks. Ahhhh, how wonderful it felt. This is only one thing that is quite "uncomfortable" while I am in Club Med. The benefit of this, though, far outweighs the negative so what do you do!? Well, if you have CF, you 'Suck it up and deal with it!" As I have said in the past, I don't like whiners and complainers, but I just wanted to let you in on ONE facet of my hospital stay.


Just for ONE moment, imagine having it in YOUR chest for 24 hours and multiply it by 21 days. Imagine trying to sleep with it in? Every move you make, it makes itself known. Imagine trying to take a shower with it... trying to keep it clean and dry. Imagine exercising with it still in your chest...while you are working up a sweat and constantly moving around. I am always so worried that the "occlusive", which covers it, is going to come loose and let some sort of bacteria or bug inside that will eventually work its way into my bloodstream and shut down my system. Imagine. Just for a moment. I do this.... because I have to!

The last time I was hospitalized, back in April of 2009, was when I got this "new" Power Port inserted through surgery. I had another one inserted back in 1994 by a surgeon who told me a little secret on how I could keep it a "VERY" long time without getting it replaced. I heeded his warnings and had THAT particular port, which lived under my skin, for 15 years. I think it's a record! A port-a-cath is inserted under the skin and a catheter is threaded from that to the largest part of your arteries.... up your chest, under your breast bone and down almost into your heart! This allows the IV medicine to get into the blood stream faster and not pulse the smaller veins as hard as a peripheral IV or a PICC line catheter does. The doses and antibiotics I require are "Big Guns" and have killed all my other veins since I've been doing IV's for most of my life.


I really do love it...despite it's drawbacks that I enlightened you with already. Yes I do...it's my new "DRAGONFLY" brooch, as a good friend, Tom, calls it. The reason being? Well, after it was newly inserted I was telling him about my expensive surgery and said "This was all I had to show...for $25,000"[pulling the v-neck of my shirt aside exposing a lot more than he expected to see. He still kids me--to this day] My lovely, $25,000 Brooch which sits prominently on my chest, is all compliments of my honey.. or at least ...due to HIS insurance company, for sure. You can make comments here.... I'd love to hear what you have to say on THIS one! Sorry if I grossed anyone out! It's just reality to me. What doesn't kill you, makes you stronger and if it's not one thing, it's your mother, I mean, another.... Sorry, Mom... you know I love you with all my heart!

New Love Stamps!!!

Yes! That's what I'm talking about!!! I was hoping they would come out with some pretty ones this time!!!! I am so excited to get some of these.... Can't you just imagine what you could do on an envelope to coordinate the colors! NOW, I want to practice painting my pansies again! I just ordered some from www.usps.com They ship within a day but you have to pay a dollar for shipping in some cases. I don't know if my P. O. will carry them right away, so better safe than sorry.... we'll see. Enjoy! I'm excited!!!! Go get 'em!!!!

Plans and schemes!

A man’s heart plans his way, but the Lord directs his steps! -
Proverbs 16:9

As much as I want to get out of here... there is a reason that I am not out yet. I am seeing such good progress, though, and can't wait to see what my numbers have risen to. I have been working hard to get them higher, so Friday we will find out if all the hard work has paid off. Till then....

Turning the corner to the BRIGHT side!

Well, folks... today I feel OH SO MuCH brighter! YAY! I can just hear all of my friends cheering and breathing a sigh of relief. You've all kept up such a vigil for me... praying, thinking of me, calling, sending cards and all... THANK YOU goes out to everyone. I am not saying that I will get my "Get out of jail free" card shortly, I'm just saying that I think that the antibiotics are working. They are taking a little longer and more doses, but they are working!! I am a very happy camper. I rode my stationary bike in my room today...As you can see, it's a dinosaur! It is so uncomfortable and old.... the seat has no padding left it in and I care barely reach the pedals.... (knock it off with the short jokes, here... CT). I rode it for a whopping 40 minutes and only desaturated in my oxygen level a few points. My heart rate was rather high, but that will come down in time, too. I felt a little light headed after reaching my finish line, but I was feeling inspired and satisfied that I did what I could, and then some... Actually, my goal was only 30 minutes, but to push myself, like I do... I added another 1o minutes when my time was up. Can't call me a lazy wimp today! Was it hard!? Yes, but is life HARD, as the answer for the chronically ill is YES, but only as hard as we perceive it. Since my condition is all I've known, it is something I embrace and conquer. A winning spirit is all I am talking about, but it would not have been possible without the love, encouragement and motivation I get from you, all of my beloved peeps as well as that innermost desire to thrive... no matter what! I WILL defeat you, CF! Oh yeah...how could I forget to mention MY SHIRT!!! It has a chile pepper on the front with a BITE chunked out... it says "iHungry" ... You guessed it... it's a CHUY's shirt and on the back... it has all the "apps" (appetizers) such as nachos, queso compuesto, etc. Get it.. apps!
I love it..... If anyone HAS to have one... let me know. I almost got a different one that says:
"There's No Place Like Chuys".. it has Dorothy's house and the path that leads to her red shoes, but they are Converse RED high tops ---how cool is that!? Chuy's Rocks!!! (and so do I, today!) There you have it for my Sunday so far! Hello... Austin Sunshine! The REAL Trish is back! Look out! Hallelujah!

Patience is a virtue!

I am bummed-beyond-belief…but I kinda knew what the doc was going to recommend…

Infectious Disease doc: aka Dr. Clooney… very cute doc that I normally should be very
concerned about seeing, but really don’t mind seeing at all considering the circumstances. He fixes things…finds the right treatment and really seems to care… he’s so pensive all the time. I don’t like the fact that he comes in when “all else is failing” (exaggerating a little here). But,he looks like George Clooney and I am sure everyone flirts with him…. how can you not, when he blushes at the comments. Anyway, the last time I saw him was a time or two ago when the IV antibiotics the normal doc (awesome CF doc, might I add here) had me on weren’t working anymore to the point where I wasn’t getting better in the ordinate amount of time. So, Dr. B. swoops in and decides the alternate strategy and/or other course of IV’s to be infused.The rest of my routine in here stays the same… inhaled nebs, respiratory toilet, diet, workouts, sleep—or non sleep patterns if anyone has any experience with hospitals, updates on my computer, awakenings from staff at inopportune times for vital signs and blood sugar sticks, etc. I find myself wanting to sleep a lot more during this stay than others. I am still just so tired all the time.

Patience and meditation are my friends right now. They are my only friends that literally keep me from going insane in this "semi solitary confinement". It is so hard when your life just “stops” like this for two weeks or three weeks and there is nothing you can do about it. It doesn’t matter if you get all your treatments in, blow your head off till you’re blue in the face and still not produce the numbers in the required range. I still have faith, though, that my baseline will once again return to where it was. I just need to exercise more, if I can, and pay even closer attention to all the tell tale” signs of infection… be more in tune to my body and what it is “screaming”, not that I don’t already, but I believe the infection I have now seems to have a much more advanced progression where it’s incremental and takes over much faster than in the past. Before I had this particular one, it would slowly creep up and BOOM… now, it’s only a matter of a few days of when I notice the change and it seems to overtake my lungs requiring oxygen, violent coughing attacks and gasps for air.

I “do what I do” till I can’t DO anymore…. It’s in my nature.I wouldn’t be here if that wasn’t the case. I have always been one to fight and have had so many heros (cf brothers and sisters) that have inspired me and fought before me---so, I will continue my trek onward and do whatever it takes to get back to my baseline (or even higher---wouldn’t that be nice!) I have my strong faith, a loving and fulfilling husband, so many friends who love me, family who support me, a team of respiratory caretakers…including my doc and a great online community whom I can turn to always. I am blessed for that. I just can’t wait to get home to see my puppies and hubby! Normality and routine of my “boring” life to be reinstated is what I want right now. ….til later….

This is from Abbey.... the top image is from Sandy....

Beautiful mail...beautiful friends...

I wanted to share some of the beautiful work that my friends have sent me while I have been in the hospital. This is one from my friend Sandy... in prior posts, I have showcased her "Sandala" work and this is yet another one of her beauties. It came as a post card through the mail and it's a wonder it got to me 'cause it's so beautiful. I'm surprised someone in the postal system didn't keep it. The green ink on the black paper really makes it pop and the writing is just gorgeous! The other side of the postcard, with my address is equally as pretty with a coordinating stamp and an embellishment where she used Diamond Glaze to give it dimension.


On another postcard she sent, she used the green color adding Doc Martin's BleedProof white to make it even more opaque and jump off the paper. This time, on brown paper, the flowers and the name are so pretty and prominent. Everyone loves it who sees it in my room.

I placed the card in the flowers that my friend Pat brought me. I can't have real flowers in my room, due to the breathing issues....plus all the stuff the water breeds in flowers, so she brought a sunshiny, cute little pretend bouquet that made my day.


The one below is from Newbie, Karen....She really made my day.... as well as Anita, Monica, Teri and Connie. I was going to take a photo of the one that Connie made me as it was very clever, but it must have gotten taken home with "the bills" when Kevin left the other day. It was on the
windowsill for awhile and now it's gone. Maybe the gremlins came in at night and took it. LOL!

Thanks again to everyone who sent me kind thoughts and get well wishes so far. You're the best and it really helps in the recovery and restoration process to my good health...healings for my soul!



I love this card!!! I always sign my emails and letters with x's and o's. Anita knows me so well!

Here is the pretty flower bouquet from Pat!

Me... in my pajamas... but at least I put on some makeup and jewelry and especially ... the SMILE I put on! I must be getting better!

Looking forward....

It's not too far from now that I will check off another thing from my "Bucket List"! Norah Jones is coming to Austin and Kev and I are going to meet her. I can't wait. She is playing a concert at Stubb's BBQ on May 1st and we both are very excited to get to meet her this time. She came to the Backyard a year or so ago, but we weren't able to link up, although she comped our tickets. I have a great friend/pen pal/brother who happens to be her fan page moderator. Since he was planning on taking his family in NC to see her, when he asked for tickets for them.. he also asked if there was a possibility that we could meet up with her too. I absolutely love her voice and her music. She sings me to sleep like a baby listening to a lullaby. I know that she will be really sweet and nice and I hope that we get a chance to just hang out for a little bit. Maybe we can eat ribs with her..wouldn't THAT be a story?!!! I hope I remember my camera.

Today, the Old Settler's Music festival is happening. I have always been the Youth Talent Competition judge but this year was the exception. Kev is at the festival now, getting drenched with the other crazy campers. He took my place as judge this year since he wasn't tasked to do anything else this year. They are saying that it is raining an inch an hour and it's just one, big mud puddle. I'm glad I'm not there. I don't need that. (LOL) The line up was pretty good though-- including Alison Brown, whom we both love. She played only one day...yesterday. Blue Highway played just once, too! I think there are some other stellar groups there today, but who wants to weather the storm... sitting in lawn chairs....getting a steady shower? I hope it clears up. We did it last year....

Friday night, 2009 at OSMF, we saw the Gibson Brothers and Greencards. It was well worth getting soaked to the skin.... then, on Saturday, we came back and Sarah Jarosz played some of her debut album songs that hadn't even come out yet. The sun was out by then, though. This coming Saturday... the 25th, Sarah will be back from her college in Boston to play at the Cactus. I am very excited to go see her play then. We went to her opening CD Party there and it was standing room only with people outside the door wanting to get in if anyone left.... Amazing talent! We love Sarah. I am "officially" spreading the word for that concert and was even sent posters to hang in hopes to get another SOLD OUT concert! This is her old stomping ground, so I don't think there will be a problem getting folks out there.

This is not REAL life......

Well, it's been a week since I've known "real life", as Reggie would say... "this is not real life it's workshop life" and I will insert "hospital life". I came in a pretty sick puppy and am on the mend yet again. I have faith, though, and believe EVERY time I'm here that it's "just a matter of time". Luckily, I have a positive attitude that will ease me in and out of situations such as this one. Although I was quite sick this time when I was admitted, I did say a little prayer in hopes that this would just be routine and I'd be "in and out in no time". A week into it and I think/hope I am on track. There could have been a million and one things to go wrong, but so far it's been the norm. (I have Cystic Fibrosis, for those of you who don't know what in the world I am talking about here....)



I have been on oxygen as my levels were very low upon arrival and, at times after a coughing fit, I felt like I was going to pass out... uh, actually, one time I did, but luckily I was lying down. I call them "brown outs" as they don't last too long and have been coming more and more frequently. I sometimes wonder when I start coughing and am driving if I should pull over 'cause I surely wouldn't want to pass out then.



It's really taken me some time but I've gotten used to spending all day, everyday, by myself in my little private room. I'm in isolation and whomever enters the room has to "gown up, glove up and wear a mask". It's for my protection, but it doesn't lend for a very social time anymore in here. I used to love getting to know the staff and they would love taking their breaks in my room... saying how comfy and cozy I make it and how great it smells... (my coffee maker and perfume/lotion-- I guess. Anything smells better than MOST hospital rooms you enter if you think about it!) I've gotten used to the quiet. It's peaceful. I've learned how to calm that little voice in my head that used to scream "get busy! do something! make a difference! be the best! do more! socialize! accomplish!" I've learned to find little things that keep me calm and relaxed. When I am home, I am always doing something. Some people ask why I don't just do Home Health Care so I can be at home with my honey and puppies... and that answer is for anyone who DOESN'T really know me. I wouldn't get any rest and I would do everything else that entails care during my sickness as well as all the other stuff I normally do.

So, that's it in a nutshell...
I can't wait to get out and feel like a new, invigorated person again. ciao for now!

This guy is awesome...

I've never embedded a video here before, but I just love Tony's new song and video presentation and can't wait till I get to meet him someday. www.tonydesare.com is his website....He is the nephew of a calligraphy friend I met in New York when I taught a Copperplate class at my sister's library.

Can you imagine him and Norah doing a duet? Speaking of whom, I will be meeting her on the first of May and I am getting so excited. I have "my connections" and am very happy that they got me a VIP pass so I will meet that sweet, sunny soul.

Until I meet this wonderfully, sexy and talented man.... I will listen and drool over his voice on YouTube---LOL! See if you don't, too!

Spring in our backyard!

The flowers always remind me that there is a God, painting our surroundings each Spring. I couldn't resist getting a shot of "Flookie" as she posed so gallantly for me. She is such a ham for the camera. Some dogs run, but she just poses. I "asked" Vessie if she would hold still for one quick one and she looked at me as if I were crazy! I love my babies....



And, speaking of which, each Spring we have our local Texas Mockingbirds who "live" in our backyard nest with their babies. It takes a lot of work to keep the babies safe with our fierce, hunters perusing the perimeter daily. Once they are hatched, they can be heard and smelled by our protectors". They take a couple of weeks to get out of the nest, but then they start HOPPING around the yard which interpreted by Dachshunds.... "Play Toys". One or two have seen their last day as great excitement to our puppies... but, as they say... it's just in their nature. I never saw their eggs before. I always notice the Momma when she is feeding her young 'uns, not before they are hatched. I feel blessed.