The other day I got an invitation in the mail; it was from my CF Center. The invitation was for a Patient Education Night. I used to go to these at the University of Utah all the time--I loved getting all the free samples and vendor stuff. This is only the second one I've heard of in this area since we moved here and I was unable to attend the first. I was especially excited when I noticed who the Keynote Speaker was--Isabel Stenzel Byrnes.
Isabel Stenzel Byrnes and her twin sister co-authored a book entitled The Power of Two: Twin Triumph Over Cystic Fibrosis. Both her and her sister received double lung transplants a couple years ago and I'd read about their story on the internet. Isabel's topic is one I could really use right now, "Finding the Power to Fight CF." I was so excited--that is until I read the fine print.
At the bottom of the invitation in eensy weensy type is the following disclaimer: We ask that patients with MRSA and/or B Cepacia do not attend. For some reason this has hit me sooo hard. I've become one of THOSE cfers. An outcast. It's not enough that my medical charts and hospital bands freely advertise the fact that I have MRSA and that my hospital room door is plastered with enough contact precaution information to scare the bejeebies out of any potential visitor or even passer-by for that matter. But now even among misfits, I'm a misfit! (Shout-out to Rudolph and the Island of Misfit Toys dwellers.) This stinks. I mean really stinks.
I guess (I'm kinda thinking out loud here) this bothers me because I've known for a long time that b. cepacia is one bacteria cfers never want to get. It's bad. Once you get it, it's like turning cf on to hyper-drive. No healthy cfer wants to be anywhere near someone cultured with cepacia. Well, I guess you can add MRSA to that list too. I might as well be walking around with a scarlet M on my chest.
You would think after my MRSA debacle of 2009, I would have figured this out on my own. MRSA is bad. For heavens sake, I've been on non-stop antibiotics ever since picking up this lovely staph bacteria. But denial is powerful. Until I saw it in print, I could make excuses for my body's bad behavior.
So my reality check has thrown me off for the past few days and I'm sure that the prednisone isn't helping the situation either. Somehow I need to recreate my space in denial-land so I can keep moving forward and feel hopeful. Somehow I need to make that scarlet M a badge of honor instead of a mark of weakness. It may take me a little while longer to make the transformation, but I'm working on it. Still wish I could go to the meeting...
Thursday, October 21, 2010
Thursday, October 14, 2010
Welcome to the world...
He's here, FINALLY. Meet my new nephew brought into this world by a beautiful mother and brought into this family by the miracle of adoption! Little BIG guy Larsen was born last night at 9:11 p.m. weighing 8 lbs. 10 oz. and measuring 22 inches long. (name still to be determined)
Plan for today: Hug the stuffing out of him and his birthmom! So excited.
Editor note: After much deliberation, his name has been officially decided: Max Elliott Larson.
Tuesday, October 12, 2010
I'm a low--ri--der...
Well, I survived my 3 hour clinic appointment: a PFT (pulmonary function test), two separate blood draws (yep, that didn't work out so well), visit with endocrinologist, visit with study coordinator (didn't qualify for any), a bone density scan, and visit with CF doc. Whew! My FEV1 (forced expiratory volume in one second) was 31% which wasn't bad but wasn't good. I didn't technically lose any ground but I'm also still on 60 mg of prednisone so I was hoping for a higher score with 'roids on board. Guess not.
Gratefully, Dr. S thought I sounded MUCH better than the day I was admitted and agreed the IV's could cease and desist. I didn't even have to lobby too hard. So this morning I finished my last dose and pulled the needle. It always feels amazing to get the dressing off and be able to shower without plastic wrap and a mile of incredibly sticky tape. I get to start on oral Zyvox tomorrow for the MRSA control so there is no rest for the yeast control efforts but oh well. If anyone has found anything to be effective in that department, I'd love any new ideas to try.
Yesterday I brought along my meds hoping that I'd actually be home before I needed to start them however. But by the time I was done with the appointment, I was already an hour behind. So I zipped out to my Beetle and began to set up an IV drip line. Yep, using my best sterile technique efforts and a mangled wire hanger, I managed to turn my VW into a mobile medicine delivery system. I was so proud. Too proud.
It was already after 4 and I hadn't had any food since breakfast. Should have thought of that before starting the IV, right? Well, I decided maybe I could do a drive-thru and not have to walk into a food establishment holding a deranged metal hanger above my head. Yeah, good plan. So I'm off down the road to Good Times for a burger and Spoonbender. I am now in a huge time crunch. But I decide at this point to sit in the parking lot and eat to be less of a traffic hazard; since yes, now I'm officially in the time of day to be a part of the Denver rush hour traffic scene. Not for the faint of heart let alone hands full of food and one eye on a slow and steady drip.
I must make mention here that I am also not in my preferred driving mode which is preferably above the steering wheel. In order to get enough gravity distance to get a steady drip, I had to ratchet down the seat to a depth I didn't know it even possessed. I looked like one of those scary little old ladies who can barely see over the dashboard. Yikes.
I'm on the road again trying to decide which of two possible routes would take the least amount of time and which merge did I want to sit in when I thought to take a look at my gas tank. Oh joy. I am one blip above my red bar of doom. When my car beeps a warning at the top of the red bar, my gas tank level drops like a rock. Well, now I have two choices: I can either stop at the next available station and figure out how to pump gas while doing my keep-hanger-above-head act, or I can test my luck and pray that I-25 is not a parking lot and I can get through the worst of the heavy traffic before I have to stop to change out the IV for round two at another gas station. I opt for plan b--go for it.
I must mention here that my little Vortex blue Beetle has been having a couple of issues lately, one of those problems being the blinker system. The blinkers are totally possessed. They will blink once or twice then either stop outright or do this Tourette-like stutter and then go bonkers. Usually it makes me giggle but its not exactly what you want blinkers to be doing while attempting numerous lane changes at high speed with bumper to bumper traffic.
At this point, my situation feels rather ridiculous--I'm kinda laughing on the inside but I'm also wiping sweaty palms on my pants from the stress. I'm doing drugs, looking like a low rider, being barely able to see out, having not enough gas, signaling like a spaz. Do I get street cred for this?
Happy to report I was actually near an exit about half-way home from Denver when my low gas signal buzzed and my drip came to a close. Couldn't have planned it better if I had tried (I guess I actually did try, didn't I?) Set up my second IV which was a nice, discreet pressurized ball. Filled the tank. Made it home with ten minutes to spare before my next meeting. Gotta love it.
Gratefully, Dr. S thought I sounded MUCH better than the day I was admitted and agreed the IV's could cease and desist. I didn't even have to lobby too hard. So this morning I finished my last dose and pulled the needle. It always feels amazing to get the dressing off and be able to shower without plastic wrap and a mile of incredibly sticky tape. I get to start on oral Zyvox tomorrow for the MRSA control so there is no rest for the yeast control efforts but oh well. If anyone has found anything to be effective in that department, I'd love any new ideas to try.
Yesterday I brought along my meds hoping that I'd actually be home before I needed to start them however. But by the time I was done with the appointment, I was already an hour behind. So I zipped out to my Beetle and began to set up an IV drip line. Yep, using my best sterile technique efforts and a mangled wire hanger, I managed to turn my VW into a mobile medicine delivery system. I was so proud. Too proud.
It was already after 4 and I hadn't had any food since breakfast. Should have thought of that before starting the IV, right? Well, I decided maybe I could do a drive-thru and not have to walk into a food establishment holding a deranged metal hanger above my head. Yeah, good plan. So I'm off down the road to Good Times for a burger and Spoonbender. I am now in a huge time crunch. But I decide at this point to sit in the parking lot and eat to be less of a traffic hazard; since yes, now I'm officially in the time of day to be a part of the Denver rush hour traffic scene. Not for the faint of heart let alone hands full of food and one eye on a slow and steady drip.
I must make mention here that I am also not in my preferred driving mode which is preferably above the steering wheel. In order to get enough gravity distance to get a steady drip, I had to ratchet down the seat to a depth I didn't know it even possessed. I looked like one of those scary little old ladies who can barely see over the dashboard. Yikes.
I'm on the road again trying to decide which of two possible routes would take the least amount of time and which merge did I want to sit in when I thought to take a look at my gas tank. Oh joy. I am one blip above my red bar of doom. When my car beeps a warning at the top of the red bar, my gas tank level drops like a rock. Well, now I have two choices: I can either stop at the next available station and figure out how to pump gas while doing my keep-hanger-above-head act, or I can test my luck and pray that I-25 is not a parking lot and I can get through the worst of the heavy traffic before I have to stop to change out the IV for round two at another gas station. I opt for plan b--go for it.
I must mention here that my little Vortex blue Beetle has been having a couple of issues lately, one of those problems being the blinker system. The blinkers are totally possessed. They will blink once or twice then either stop outright or do this Tourette-like stutter and then go bonkers. Usually it makes me giggle but its not exactly what you want blinkers to be doing while attempting numerous lane changes at high speed with bumper to bumper traffic.
At this point, my situation feels rather ridiculous--I'm kinda laughing on the inside but I'm also wiping sweaty palms on my pants from the stress. I'm doing drugs, looking like a low rider, being barely able to see out, having not enough gas, signaling like a spaz. Do I get street cred for this?
Happy to report I was actually near an exit about half-way home from Denver when my low gas signal buzzed and my drip came to a close. Couldn't have planned it better if I had tried (I guess I actually did try, didn't I?) Set up my second IV which was a nice, discreet pressurized ball. Filled the tank. Made it home with ten minutes to spare before my next meeting. Gotta love it.
Sunday, October 10, 2010
A week in the rearview mirror...
Well, it's been a long week for me. I've been glad to be home even if its been a bit exhausting. Still feeling the weakness of the hospital stay combined with the high steroid shakiness makes it hard to function very well. But I've managed to pull off a few highlights despite it all.
We are all still on baby countdown for Mike and MaryAnne's little boy. Since he was due on Sept. 26th, I was reluctant to go into the hospital and miss out on all the excitement. Well, turns out it was a good thing I didn't wait for him to make his appearance, the little slowpoke. The baby shower/brunch went on ahead anyway on Saturday and the baby was there in attendance, albeit in the birth mother's tummy. Chelly decided to come to the shower and it was so fun for everyone to meet her. With the help of Maggie, the three of them opened the gifts together and it made for some very tender moments. It was so cute how excited Maggie was about baby clothes and "Little Guy" Larsen will be stylin'. Word on the street is the doctor will induce on Thursday if things don't get going! Yippee! Carolyn extended her stay here since she hasn't got to "help" with the baby yet...so that's been fun too.
We've been working hard on Bob's campaign all week. I've made fliers for our "What About Bob? Tour" which starts tomorrow. We are bringing Bob to the masses! Well, that might be putting it a bit strong but we are trying to put together neighborhood meetings in all our important precincts. Besides planning meetings and website updating, Rheid has been decorating a motor home for the tour with banners, posters, bumper stickers, and general red-white-and-blueness. Hopefully we get a big enough turnout to justify all the work.
One of the best parts of the week was a visit from my cousin, Lynne. We haven't seen each other for at least fifteen years we decided. She lives in Seattle and traveled out to Denver for training classes. Lynne made time in her busy schedule to drive here just to see me and it meant so much. I loved hearing about her little family and just catching up. Family bonds are amazing.
Tomorrow I go to clinic. Hopefully they will agree with me that IV's should be discontinued. I've noticed quite a difference in my breathing the past two days dropping from the IV steroids to oral ones. I am definitely tighter but I want to decrease the dosage anyway just to feel better. Who knows. Christina started a sinus cold on Friday and I've tried to stay away from her as much as possible. Go little suppressed white blood cells, you can do it!
We are all still on baby countdown for Mike and MaryAnne's little boy. Since he was due on Sept. 26th, I was reluctant to go into the hospital and miss out on all the excitement. Well, turns out it was a good thing I didn't wait for him to make his appearance, the little slowpoke. The baby shower/brunch went on ahead anyway on Saturday and the baby was there in attendance, albeit in the birth mother's tummy. Chelly decided to come to the shower and it was so fun for everyone to meet her. With the help of Maggie, the three of them opened the gifts together and it made for some very tender moments. It was so cute how excited Maggie was about baby clothes and "Little Guy" Larsen will be stylin'. Word on the street is the doctor will induce on Thursday if things don't get going! Yippee! Carolyn extended her stay here since she hasn't got to "help" with the baby yet...so that's been fun too.
We've been working hard on Bob's campaign all week. I've made fliers for our "What About Bob? Tour" which starts tomorrow. We are bringing Bob to the masses! Well, that might be putting it a bit strong but we are trying to put together neighborhood meetings in all our important precincts. Besides planning meetings and website updating, Rheid has been decorating a motor home for the tour with banners, posters, bumper stickers, and general red-white-and-blueness. Hopefully we get a big enough turnout to justify all the work.
One of the best parts of the week was a visit from my cousin, Lynne. We haven't seen each other for at least fifteen years we decided. She lives in Seattle and traveled out to Denver for training classes. Lynne made time in her busy schedule to drive here just to see me and it meant so much. I loved hearing about her little family and just catching up. Family bonds are amazing.
Tomorrow I go to clinic. Hopefully they will agree with me that IV's should be discontinued. I've noticed quite a difference in my breathing the past two days dropping from the IV steroids to oral ones. I am definitely tighter but I want to decrease the dosage anyway just to feel better. Who knows. Christina started a sinus cold on Friday and I've tried to stay away from her as much as possible. Go little suppressed white blood cells, you can do it!
Monday, October 4, 2010
Heigh ho, heigh ho....
Heigh ho, heigh ho, its back to home I go! I finally checked out of my Bed & Breakfast private room this afternoon--eleven days of fun and frivolity. But lucky for me, the fun just keeps on coming. I am going to do another full week of antibiotics and solumedrol at home. Oh joy and rapture.
One thing about hospital visits that always surprises me are the mixed emotions I experience coming out. I hate to have to check myself in but then I have this weird part of me that is always reluctant to leave. I guess it's a security kind of thing--if something goes wrong, they know how to fix it.
But then a part of me also knows that they really don't know how to fix everything or even if they can in some instances. Like when I started to bleed this week and I pulled the cord for help. Nurses came. Residents came. Six people in my room not knowing what to do to make things stop.
I could say that luckily for me, the bleeding subsided on its own--but luck had nothing to do with it. When the all too familiar sensations began and I knew I was in trouble, my initial panic was replaced with a comforting calmness as I prayed to my Heavenly Father for help. Help to make the bleeding stop. Help for me to feel at peace. Help for the medical team to know what treatments would be most effective. Help to continue on.
I am grateful for the help I received throughout my stay. I had good nurses who made me feel comfortable because of their efficiency and skills. I had amazing doctors who listened to me and my concerns. I had supportive family members and friends who visited or kept in touch. I had state of the art medicine and equipment to give me the best chance of healing. I had a loving Father who watched over me and blessed me.
One thing about hospital visits that always surprises me are the mixed emotions I experience coming out. I hate to have to check myself in but then I have this weird part of me that is always reluctant to leave. I guess it's a security kind of thing--if something goes wrong, they know how to fix it.
But then a part of me also knows that they really don't know how to fix everything or even if they can in some instances. Like when I started to bleed this week and I pulled the cord for help. Nurses came. Residents came. Six people in my room not knowing what to do to make things stop.
I could say that luckily for me, the bleeding subsided on its own--but luck had nothing to do with it. When the all too familiar sensations began and I knew I was in trouble, my initial panic was replaced with a comforting calmness as I prayed to my Heavenly Father for help. Help to make the bleeding stop. Help for me to feel at peace. Help for the medical team to know what treatments would be most effective. Help to continue on.
I am grateful for the help I received throughout my stay. I had good nurses who made me feel comfortable because of their efficiency and skills. I had amazing doctors who listened to me and my concerns. I had supportive family members and friends who visited or kept in touch. I had state of the art medicine and equipment to give me the best chance of healing. I had a loving Father who watched over me and blessed me.
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