Saturday, September 30, 2006

Happy News- Congratulations to High School friend Suzanne Fortini and Paul Miraglia on their engagement! Best Wishes and all my best to you! I bet Lena is ecstatic! (That grapevine sure is intact!)

I got a lot of well wishers for my speech and many thoughtful emails inquiring about how it went and the answer is- it didn't.

I have felt miserable and the yuck was in my chest. I was coughing all night and felt too exhausted to drive the two hours. Plus, someone had to watch Heather. So I let them know I had a personal emergency come up and prayed that I wouldn't have to go to the hospital. I've been continuing my TOBI and the cough isn't so wet and gross, no its dry and it has relocated in my sinuses. I went for my pre-op: hernia repair is on Tuesday, and I got the green light. So no worries. I am trying to get some extra sleep when I can.

Since the wedding, I have been inundated with work. I am taking three classes, two are 6 weeks long, which concentrates all the material and assignments. One of which is my masters' project. I am trying to increase awareness of organ donation for people aged 16-21. I made a movie/slide show and I think it is pretty good. I couldn't really figure out how to upload it here or how to do it on myspace. Yes, I hate myspace for multiple reasons, however, it is the most popular medium for my target population so there I am: I will need suggestions about templates and cool thing to put there, so if anyone has suggestions or technical advice PLEASE HELP!!! I have to get this done by 10/18 when I next have to report on my progress. I am speaking at the new hire orientation on Monday so I have to tweak my movie before then. Thanks to Rebecca to getting pictures to me ASAP and my old Chest PT goddess Betsey who emailed me back in record time!
You know, I don't have many very SICK looking pictures. I mean , I look hideous because of my prednisone moon face, but not what I would have expected given I was just about near death.
Okay, I'm drained! Have a great weekend!

Tuesday, September 26, 2006

As usual, I am procrastinating. I am still recovering from the yuck, although some inhaled TOBI does the trick. I actually tested the stuff in the clinical trials about a million years ago in junior high. Much different now. I have been putting together a slide show of my life, for the most part, for the presentation tomorrow. I still don't have the speech down pat. But I have a lot of rambles that I am sure will turn into something viable. In particular, I am focusing on how respiratory therapists can maintain boundaries of professionalism given the intimate nature of the field. I'm hoping I can make them laugh. I actually heard from Susanne Meninger, my most favorite nurse in the whole wide world. It's funny because I have gained so much insight on the topic recollecting my times with her. I also solicited good ol' Betsey, who found me last year as was getting my Kidney. She gave me a lot of perspective on how you have to handle things and how that has changed for her. But some of the patient relationships she's maintained have made her career what it is, nevermind that's how she met her husband. So wish me luck and I'll post my slide show, if I can figure out how to do that after I deliver it.
Until then..

Monday, September 25, 2006

HAPPY BELATED BIRTHDAY BIG D! Poor Darryl, in all the wedding goings-on, it was Darryl's 61st bday and it passed by with little fanfare. I would sing but it would likely pass germs your way- not the gift you wanted right?

Just don't you forget about June 17th- if I make it, which we all have no doubt about (though in the past things were "iffy") I'll be 30!

Sunday, September 24, 2006

Scott and Todd wait for Audrey to walk down
the aisle!

Kristen Galletti, my sister-in-law, takes a photo of me
and I of her on the bus!

Deb and Big D at the Rehearsal Dinner (prior to cocktails)

Well, Scott and Audrey got married and a good time was had by you will see as I get more pictures as the week goes by. Unfortunately, the YUCK has traveled to my puffers and pneumonia is probably a sure thing. I couldn't do my reading because I have no voice and Kristen, my sister-in-law extraordinare subbed for me. I didn't know if I was going to make it to the wedding at all- given that I puked in my mom's Elizabeth Arden Spa bag after I got my hair and make-up done at the Westchester Mall. Nonetheless, I put on my big girl panties, which are, incidentally, my hot-party pants, and went out swinging. I had a great time at the rehearsal dinner and afterwards and my mom blamed my illness on the wedding day on my evening prior- but it just wasn't it. Though it was enough for me not to drink at the wedding... I got a chance to meet some great people- Scott's HBS friends that I ragged on all night, Audrey's cousin and his mom, who has had three (3!) Kidney transplants, and Audrey's brothers and friends who I felt like I knew forever. Todd, believe it or not, made some funnies, during his best man speech. It's the quiet ones you have to worry about you know! Kristin Galletti (Baby Elise's mom) and Dave (the baby's daddy!) sat at my table and had a blast too! The Kingston Fire Chief was burnin' up the dance floor. He may be retired, but you wouldn't know it! All was fine for me until Scott broke out the Cubans and everyone lit up under the tent. The wedding was at a beautiful estate- the Wainright House overlooking the Long Island Sound (?) certainly Rebecca will read this and correct me. Anywho- a lot of laughs, despite the congestion. The best part was coming home to Heather who ran to me and gave me a squeeze and Puppa, who greeted me with a wiggly tail. Kevin was visiting his Dad and doesn't feel well himself, but he would be really stupid not to miss me. I spent most of the evening doing school work that I was supposed to do while I was away (what was I thinking).

Wednesday, September 20, 2006

Baby Elise won't be at the wedding Saturday, but her parents Kristin and Dave will be!
I'm leaving for NY tomorrow for my brother's wedding and I got the YUCK! Serious yuck- like borderline pneumonia yuck. I couldn't volunteer today, couldn't go to class. I pretty much stayed in bed. I got the yuck from little Heather, who just loves to tag along with me wherever, to vote, to go to Walmart, to get my car inspected. Unfortunately, despite my antibacterial-microbioial wash I keep in the car, she also loves to give me the yuck. I drank some chicken broth, which came out the same way it went in. Puppa has been right beside me sensing my dismay and wondering how my red nose will look with my dress.

Saturday, September 16, 2006

In general, it's just another quiet day at Camelot Self Storage. However, my mind is frantic planning and digesting everything from this week. I started back to school this week and it was like a fresh wind blew through my house. I felt alive and awakened- then overwhelmed. I'm doing my master's project this semester and while I expected it to meet every week, it turns out only to meet 5 times. This makes implementing my large scale organ donation awareness project much more realistic. I also was granted renewal on my financial aid, an area I am truly trying to resolve as much as possible. I'm hoping my financial management class will rub off on me there.

Scott and Audrey's wedding is next weekend so I have to hurry up and read and do my research for school, some beauty regimens like plucking the caterpillars above my eyes and a highlight for my dead hair, AND creating the presentation for my speech next week for the respiratory therapy society.

For my presentation, I am definitley looking for pictures of me. I ahve across some other general pictures via Google images. The problem with the ocitures that I have is that there aren't a lot of me during the period when I was sickest. I don't have any oxygen pictures or what not. I'm really going to check the archives to scan and make a slideshow. SO...IF YOU HAVE ANY PICTURES OF ME LOOKING BAD (not bad, but) SICKLY/BAD- PLEASE SEND ASAP!!!!
Much love,

Friday, September 15, 2006

I am POOPED! I was supposed to go see doctor kidney today but I have already gone to the city for appointments 4 days this week, so I asked her to switch it to another Friday that I would be coming in anyway. Getting this pancreas will be a thrill, but you really have to committed and not have any other life while you do it. I am trying to be a professional patient, professional student, and pseudo mom.

I opted to take 3 classes to finish up my class work. I still have a bit left from my class in June, which I am aiming to complete this Saturday at work. Just buckle down- Just buckle down. I keep telling myself. But I am going in a million directions.
I am doing my masters project this semester, focusing on what else Increasing awareness for organ donation. I have completed a lot of the parts of the whole so I am thinking that it will be exciting to get all my ideas off paper and into action. Part of my project is going to be my presentation next week for the Massachusetts Society of Respiratory Therapists. I was thinking of a slide show of pictures- SO IF YOU HAVE ANY PICTURES OF ME LOOKIGN SICKLY OR LOOKING REALLY HEALTHY<>

More updates later... Days of Our Lives is On and I must read about Financial Management of Nonprofits.

Friday, September 08, 2006

CRANK IT UP!!!! I just got a call from the transplant nurse at the Brigham and I am LISTED for a PANCREAS. I am technically status: inactive because I still have some more tests to complete my evaluation, but I am accruing time on the list which is important in deciding who gets what when. I found out that I am one of ONLY FOUR PEOPLE at the transplant center that are waiting. It could be as little as 6 months as many as 12.
Unfortunately, this means I can't travel internationally- so sadly no cruise for Kelbel's 30th. I haven't told Carrie yet, but I just rung up Kelbel to tell her. I am really excited but nervous too. I am trying to capture these feeling in wiriting so I know what t0 talk about during my speaking engagement on the 27th of September. I'm calling it "As I Live and Breathe" just like my blog. Help me with stories, PLEASE, that I can incorporate into my talk.

Please pray for me- this may be my third miracle (how many do you need to be a saint?) and I am trying to keep perspective of all the blessings in my life. Life is amazing. Please pray the person that is walking around right now, perfectly healthy not knowing that in a couple months that life as they will be over and passed on to me- that scares me a little bit but I know that God has a plan.
CARVER, Mass. -- Fire officials responded to a house explosion in Carver Wednesday morning.
NewsCenter 5's Jack Harper reported that the house at 17 Eda Ave. exploded at about 9:30 a.m. There were no reports of any injuries.
Two brothers rent the house, located near Edaville Railroad. They were not at home at the time of the blast.

"Everything was off this morning. We got up this morning and got dressed and went to work," said resident Robert Monahan.
Three hours later, a blast shook everything near Edaville Railroad.
"We were up in the main building up the street and we heard a vibration. We were not sure what it was. (We were) going around the building trying to find out what happened. It sounded like something hit the building," said Susan Wentworth, of Edaville Railroad.
Investigators said they are focusing their attention on a propane tank that feeds the residence.
"There is no underground propane in this area of town. Each individual home is fed by a cylinder that is unique to that dwelling, so there is a cylinder on the side of the structure, and we are focusing our investigation on that," said Carver Deputy Fire Chief Eric Germaine.
"Thank God my brother wasn't in the house watching TV," said resident Stephen Monahan.
"We lost everything, but at least I am alive," said Robert Monahan.
Carver investigators are working with state fire marshal's office to determine the exact cause of the blast.

For those that have called and asked, yes, these are Kevin's brothers. They are fine and are getting a lot of help from the Red Cross. All the furnishings belonged to Kevin- we lent them to the brothers after I moved in. They are staying in a local hotel and the Red Cross helped them with clothes, food and a new apartment (including deposits, etc) I think the brothers perspectives about living have given them pause- perhaps it will be lasting.

Saturday, September 02, 2006

I'm sitting here at Camelot Self storage, waiting for the next hour to pass. I need a nap. I gave Kevin my cup o' noodles when he visited and now, I wish I had another one. I had some of the gnocc (bread with meat in it, an Italian delicacy) my mom brought down but, he ate the rest of that too. I watched Heather here at work while he priced a job and then he waited here to meet some of the prospects for one of his overnight seasonal jobs. He called the people yesterday and left messages, but still no one showed. He hung out here about 2 hours. He can't sit still though. One good thing: he fixed my blow fuse in my car. Since I got it inspected the radio and the clock haven't worked. 2 days without either was rough. It's amazing how something so mundane becomes part of your unconscious routine. My grandparents stopped by today too. They sold their place up here and expect to spend most of their year in Florida, opposed to splitting their time, north and south.
I've been trying to situate my schedule for school. I'm thinking about taking 2 ground courses at Northeastern and one on-line. But financial aid is up in the air and I don't want to get caught behind the 8 ball.
I am trying to get Kevin to work out Heather's schedule, even for next week, but he can't think that far ahead he says. As much as I want to help, I have picked up extra hours at self storage so that I can pay my tuition bills. I have been really working on tracking my expenses. In fact, while browsing Oprah's website, looking again to see if perhaps I might be a worthy guest, I came across the Debt Diet. I found that many of the worksheets will be helpful. My credit score dropped with the bills I inherited post-divorce and then by being out of work with the kidney failure. I am trying to keep my work less than the government level allows so that I don't lose my benefits. I don't think I could manage to work full time. Certainly not going to school and watching Heather, not to mention all of the pancreas testing.

Has anyone mastered the art of multitasking? Please send me some tips? Parenting tips too about how to get Heather to bed before say 10pm.

More later...

Friday, September 01, 2006

As you may remember from earlier posts, I was invited to speak at the annual conference of the Massachusetts Society for Respiratory Care in Sturbridge, MA on September 27th and 28th. My session is called " As I Live and Breathe: Life Lessons Learned Battling CF and Triumphing Through Transplantation." The contents will be similar to that of my "Get Carded" speech in 2000, as I returned to my "Homecoming" post-transplant. The difference this time will be that it will be more jargon laden and will have more applicability to the audience of medical professionals.

Dear Friends,
If there is something poignant about your experience with me, perhaps I lesson we both learned together the hard way, something you never knew before you encountered me, any funny story, or even a story that wasn't funny until now, please remind me and post a comment or email me. I need your help.
I want to make a dramatic impact- one that is remembered for its humor in the face of adversity. LET'S HOOK IT UP!

The past week has been very busy with medical appointments. I have been at the hospital on the 22nd, the 25th and the 30th. I have had all kinds of radioactive tests, like 19 tubes of blood (which alone could make someone pass out), meetings with doctors and surgeons and social workers. It seems that I may be well on my way to pancreas city. My lungs are in good condition, even though I couldn't do pulmonary function tests given my big fat hernia. I am having surgery on that on October 3rd. My mom is concerned that with such a short time between my surgical repair and flying to Florida for Jessica's shower that I might end up with a blood clot. Right now it's up in the air.
I had my eyes dilated for an opthamology exam, again, part of the pancreas evaluation. They are looking for all of the possible diabetic complications that I might already have sustained. I have yet to see the neurologist, who will be doing the same thing.

Yesterday, Heather and I went with Mandy to Nelson Street Park for a picnic. Nelson Street is right on the ocean. Although it is beautiful, it has become over run with seagulls. They are quite aggressive, more than I expected anyway. We were eating and a seagull swooped down and stole Heather's pickle right off the plate. Mandy got brushed in the head by the bird! Jude and Anne then joined us for some swing time. Jude is adorable and has two teeth growing in. He definitely outweighs Heather by a good 7 pounds now. It was good for Heather to have a play date.

Scott's wedding is fast approaching and I bought a dress this week at Anne Taylor. I really like it, but I am thinking that perhaps someone else might have the same dress. However, I think this kind of thought crosses the mind of most women going to a big event at least once. No one I am convinced however, will have my patent leather peep toe pumps! Shoes are happiness, AREN'T THEY?

More later...