It happened again. I write all about my colonoscopy and the dial up connection dies before the blog posts. SO I'll try this again... It started at 11:30pm last night when the hospital pharmacy finally delivered the Go Lytely preparation I was to drink, A whole gallon of the shit. I was chugging away- at a pretty good pace, hey I did learn something in college, but by 4am I was exhausted. At 5am the nurse woke me up to clean me out from the other end via Fleet method. I was miserable and nervous. I got no sleep. I went to the endoscopy suite at about 10am, missed breakfast of course. They tried to dope me up but I require a lot of drugs so the effects were minimal and I still felt hose probing my ars. They only good thing was that I could see my innards on the tv monitor. They didn't find anything unsual, which I guess I was kind of looking forward to- they did take several pinch biopsies. I was full of air and continued to expel it the rest of the afternoon.
My mom brought Detroit for a visit this evening, which boosted my spirits. As did the care package/pyjamagram I got from the Rushforths. It was very thoughtful. Sun designed and Duckdesigned pjs- much better than flowers and practical for a hospital girl like myself. I am hoping to get home soon. I have dialysis tomorrow I believe. I cheated and had a hot dog from the cafeteria tonight. Hot dogs are not on the approved diet list due to the amount of phospherous. I took some extra pills to try to balance the slip up. I have been drinking Diet Mountain Dew again, which is better than Diet Coke since dark soda poses a phospherous problem too. I need a manicure and a new pair of shoes. Most of all I need a good night's sleep. Mymuscles are stiff and crampy, usually a sign of kidney malfunction, so I asked for some pain meds. They really didn't do much for me. I took a walk around the hospital floor. If you walk around in a circle 24 times, it equals a mile. It is critical for rehab for transplant patients, I basically just do it to prevent pneumonia and to avoid blood clots which can grow from laying in bed too much. More tomorrow...

Once again, my blog of yesterday and the events that were erased the day before disappeared in my attempt to publish. In summary: the doctors have tried a new drug IVIG, intravenous immunoglobulin, to bump up my immune system which is nonexistant from the antirejection drugs. They are still not sure what the route is to cure this stomach issue. I had a consult with the vascular surgeon to create a fistula for dialysis access. I had a GI consult and it looks like tomorrow I will have some sort of scope shoved up my ass. Dialysis was particularly rough today- they are very aggressive here and took off 6.something kilos (1 kilo=2.2lbs). They won't disconnect you from the machine so I had to use a bed pan twice. I thought I was going to fall out of the bed because I was weak from the treatment trying to balance on the pot. I had to then wait a full hour for transport to come bring me to my room. I actually would have waited longer but the secretary, a very nice lady, decided to take me herself. She then asked if she could pray for me- not one to turn down a blessing she prayed for me and told me that I had to be strong to get through this because god had plans for me. That was meaningful to hear from a stranger and then I tried to stay awake for the soaps. No good- I zonked out. I talked to my mom and she put the dog on the phone, which is pathetic but exemplary of how terribly I miss the dog. No talk of when I'll get home- soon I hope.

Damn it! I write a huge blog of my days events in the clink and it gets erased by the stupid dial up connection I have here in the Brig. I guess I'll have to make it up tomorrow.

"Wave Of Mutilation" - The Pixies: "1. Wave Of Mutilation - The Pixies This is reminiscent of my youth- the summer with Fortini and the infamous TIger B- when I thought I was too big for my britches, now I am jst an old lady"

Well, as I should know by now, after so many years, delaying the inevitable does nothing but waste time. I tried to cancel my doctor's appointments on Wednesday because after dialysis I was ladenwith cramps and a still unstable gut. I cancelled them, but my mother, upon discovering my machinations, through me in her RAV4 and carted me up to the Brig. My new name for it much like an army jail. Then I got to drink the contrast again to see if there was anything different in my abdominal CT scan- guess what- there's nothing in there with the took the exception of some radioactive organs. For those not familiar with this test, you have to drink a pint of barium over a half hour. It is a thick, creamy substance, much like I stated in an earlier post, could be likened to pina coladas, after you've had about fifteen of them. But then you have to wait a hour, or longer depending on the schedule of the CT department which operates around the clock. I started drinking the shit at 10pm and wasn't called for the test until 2am. In the meantime though, I experienced a severe low blood sugar registering 34. I was severely symptomatic with sweats, dizziness, shakes- like I was experiencing a drug withdrawl. When I rang for my nurse, he thought perhaps my sweats were due to the room temperature-it was 78, so he put it down to 74. Upon my insistance, however, he checked my level. YIKES!
I have been a professional patient for most of my life and like anyone with a chronic illness, I know my body and its chnages best. Don't doubt me. I had to have to have several doses of IV dextrose throughout the night because I continues to bottom out with my sugar. They then began to test me every two hours. This isn't very good for sleep-so I ended up sleeping all day. My mom came to visit after work. I feel bad for her and my dog, who are both stressed and frustrated whenI am in the hospital and over an hour away in traffic. Carrie is busy with work and getting ready for a trip to a conference. She hasn't called. I guess maybe I should call instead of expecting the world to revolve around me. I am thinking that maybe school is going to be out yet another semester. I really need school or something to keep me going. The tech just tested my blood sugar and it was 501- quite the opposite of last night- will it ever end? Hoping your day is well...more later

I was happy yesterday when I opened my mail and discovered the latest edition of the Pegasus, the UCF alumni magazine. They did an update of my story and the good works my friends were doing,i.e., the cirlce of friends supper club. I am going to send out a group email to let everyone know about it and promote organ donation awareness.

Fall is really setting in now. The leaves are falling and it is cooling off. I feel like I missed most of summer because of my stomach. It looks like there aren't any classes being offered this winter for my school program, which is disappointing. I guess it gives me more time to get my business in order. I still have to take my realestate exam, but I want to make sure that my stomach is okay before committing.

Above is the picture of my family in Nantucket for Darryl's birthday.

I am feeling a little bit better today. I think the medicine is finally working. I am starting to get my regular appetite back. I made Darryl a scrapbook of the family trip to Nantucket that I missed since I was sick. He seemed to enjoy it and I liked making it. I enjoy scrapbooking as a hobby even though I no longer have a digital camera of my own- maybe christmas. I have dialysis tomorrow because Saturday I didn't make it- too much of a flare up to sit for four hours at 5:30 in the morning. I overlooked a bunch of doctor's appointments last week so I have to reschedule them all this week. My mom's folks are getting ready to head back to Florida- its that season for the snowbirds to leave. more later.

I spent most of the day today sleeping. When I went to get up and get ready for dialysis, the colon began to get uproarious so I cancelled my appointment and rescheduled for Monday morning. I think that since I was having trouble sleeping last night, I took too much Klonopin and that "relaxed" my system a bit too much. I have been better during the waking hours. Carrie and I played Scrabble and then I downloaded my mom's pictures from Nantucket. I figured I might make Darryl a scrapbook for his birthday of the celebration and some other photos I have. I heard from one of my special people Rebecca Hejl, who told me that she was engaged! I love good news. It helps pull me from the rip tide of my pity party. It is getting a little better. My mom came over and cleaned my house today. I think it helps her feel like she is doing something. ALthough I haven't had soda in months, and I am proud I haven't fallen off teh diet coke hotline, I have been drinking diet mountain dew which really gives me a kick. Gotta finish wathcing law and order now.

I don't even think that a new pair of shoes would make me feel better today. I had dialysis today to make up from a Tuesday unworthy of sitting anywhere besides the toilet. Today I made it through though but I am just emotionally drained and I am feeling sorry for myself, which is not normal for me and feels wrong on so many levels. I know I am frustrating everyone around me, including my dog, who just wants to sleep undisturbed. He comes to the bathroom door and pokes his head in to check on me periodically. Sometimes he sits and watches me sit, but grows bored and leaves to scratch or lick himself, typical male. He is the only thing that gets me out of bed. In my scrapbook of 2004, the last page said "2005 will be better" well, it hasn't and September is nearly over. The next three months have pretty high expectations on them and best to just cast them aside and chalk this year up as a loser too. No kidney, no companion, no credit. But I'm not ready to jump off the bridge just yet and the handful of pills I take are those which I've been prescribed. Maybe Jay Leno will make me laugh.

my life has been relatively unblogworthy the past week. My colon has been in an uproar and just when you think it was settling down, bam! a flare up. The doctors were trying to restart my antibiotics and that just set me back to square one. Today I missed dialysis because I couldn't keep out of the bathroom for more than twenty minutes. I didn't have a complete treatment on Saturday either. So I am huge,bloated and full of fluid. I also missed the family Nantucket trip. Besides being in the bathroom, I spent the weekend sleeping. I am just very frustrated with this lot in life and find myself drowning in pity, which is very un-Jill-like. I don't think time in the hospital will necessarily help my ailing colon or spirit. I have neglected my email, my phone, any real connection with the world. I don't think I've left the house in five days- how pathetic. I think I'll have some golden grahams now and hope they stay in. I hope everyone reading is feeling happy.

Yippee! I convinced the docs to let me go home. I am not constantly in the bathroom, infact, things have slowed quite a bit. I think it may be related to the liquid vanco that they are giving me instead of the pill form, who knows, maybe it just finally started to kick in. Anywho, I will see my doggy, which pleases me beyond all else. I'll sleep in my own bed. And in general, just be more relaxed. I dropped my classes, which saddens me, because I probably could have just gone next week without fail , but I think my body is telling me to correct my priorities and school can take a back seat right now. I have some things I have been procrastinating with because I have been so ill so now is the time to get my business in order, like visiting my family, scheduling my real estate exam and getting some refunds I'm due. I long to reorganize my closet and ready my fall shoes. Yes, this may seem shallow but , I guess I am when it comes to shoes. Hey we all find joy in different places. I have a pair I was asaving for the first day of school that I got for $11.70, normally $40. That is a dream for me. Not only a great pair of shoes but a great pair of shoes deeply discounted. Okay TANGENT!. I am hoping that now that I am going home I will be able to see my friend Jenn Cross- my ballsiest frienjd by far. She just picked up and moved to Spain, depsite the cloud of chrone's disease floating above her head. She's following her dream of being a writer and is way further into her book than I am on mine. (Jealous) Perhaps her ferver will kick my kiester into gear. more from home....

Well, the past week has been horrific and I haven't doen anything except to be in the bathroom. I finally broke down and had Carrie take me to the emergency room on Tuesday- I probably waited too long. I guess I was worried that I wasn't going to make it to school, but it really doesn't matter because I had to drop out this part of the quarter anyway. There is another class that starts in October so I'll stay registered for that. I tried so hard and this bug is just so miserable that there is no fighting it. I'm just looking forward to homecoming at this point.

This is the worst time of the night in the hospital. I have already eaten dinner and now I'm hungry again. Yesterday I went twenty five hours without eating anything. By the time I was allowed to eat they decided that I needed to drink a liter of barium for a stomach CT. Then I had to wait 3 hours for them to take me for the test. When I drink the barium, which has been more frequent than anyone deserves, I pretend that it is a pina colada and put it on ice. It kind of has a coconutty texture and smell, okay not really smell, and I chug it down.
It also stinks because there is no one around to socialize with or even to poke and prod me. It is too early to go to bed and there is nothing good on tv. AND of course, I hate the phone! That's why the laptop is so great! more later.

Today was a 6. I had to make up dialysis from yesterday because my colon would not permit me to sit through treatment. I made it , getting up only once. They switched me from Phlagyl to oral vacomycin, which makes my ears ring and my hearing worse, but oh well, it makes me feel a little bit better. I am just now getting back on track with my email and personal business. I was scheduled to take my real estate exam, but there was no way I could just sit through it that long- not quite that recovered. I have been captivated by the Hurricane coverage and I am praying for all of those suffering. I can't imagine not having a toilet right now. Although last year in Florida was quite the challenge. I cringe to think of the death and diasease that will follow the aftermath of this tragedy. Martha gets her ankle bracelet off today- cheers to the strong women of the world, whether you like her or not.

I have been blogging less due to the total feeling of exasperation I am feeling due to the c. diff colitis that I have again. It is keeping em in misery and I cried today just to get out the frustration. People have been checking in which is nice I wish I was just up to being more social. In good news Shippy and Courtney are both pregnant, both due in March. Babies, babies every where. I will have to check in with the Balboni's to see how Tiggy is faring as she nears the coming of Jude. I will write some more when I am out of the bathroom. I have to keep studying for my real estate exam, which God willing, is supposed to be Wednesday- I am not going to take it though if I've got the trots.

Is it Wednesday already- actually as I look at my clock it is 12:50 am, so it is technically Thursday and in 5 hours I will be at dialysis. I saw the doctor today- the stomach doc, and a colonoscopy is in order, but not until this latest bout is cleared up. I am sick of being sick so I have booked myself a vacation- Homecoming in Orlando in November for 10 days. The ticket was cheap and as for accommodations, with all my friends, I'm sure everything will work itself out, including my dialysis schedule. I feel like I need something to look forward to, to reconnect with my friends and feel the spirit of Homecoming even if I am reliving my glory days. I will be sending an email to all my SOuth FLorida friends and my Otown folks too, as my plan is to fly into Ft. Lauderdale stay with Kelbel and then drive to Orlando where I will crash and then fly out. Yippee. Let's pray there aren't any hurricanes during that time. I can't wait for a reunion! Now I should try to sleep, I'm trying to get a sleep schedule going and I definitely blew it tonight.
Please pray for my friend Jenn Cross' dad Dick, his cancer is setting him back pretty bad and things aren't looking good. The worst part is that he is suffering. No one deserves that.

This week has been miserable. I have spent most of the weekend in the ladies room- not powdering my nose either. My mother was so concerned she shipped me off to the Brigham to get checked out. I thought I had a simple sinus infection, but I started coughing and then the stomach thing got worse. They decided a course of IV antibiotics at dialysis would cover me. Of course, the day after you start any antibiotics you usually feel like shit because the arsenal is in full effect killing off the nasties- kind of like natsis. But on Saturday, after getting up from dialysis 4 times to go the bathroom , coming home to more of the same and being pretty much dehydrated my mother insisted I go to her house. I ate some crab and half a burger which lasted all of 20 minutes. I promised myself I would study for the real estate exam and catch up on all my email and letters but most of what I did was try to keep my sanity. I cleaned up the layer of dirt that sticks to my feet as a sashay to the bathroom. No I can swiffer witout incidence. I felt bad that my mom was so worried. Darryl was more concerned about knowing if my debt was getting resolved and when my divorce would be final. Anne is handling that so that is what I told him. Let him call her.
I have been trying to get to bed earlier with help, of course from my klonopin but nonetheless I am not suffering from anxiety as much.
I went to Pete's surprise 30th birthday party that my friend Alison, his girlfriend, through for him. Due to the stomach I made a short appearance, but a worthehile one I think. ALison put in a tremendous effort to pull off the surprise and to prepare for him. Connor was one his best behavior and I am always impressed, although he is needs ADHD meds, how well-behaved and lovable he is. She did a great job as a single mom. Carrie spent the weekend with her aunt and got season opener tickets for the patriots. I am supposed to have class that night but we'll have to see if I can even afford to go to school. So much up in the air including this great big storm cloud tht has been following me around latelty.
more happy thoughts later aned I promise to all of you that I will be in touch soon.

I haven't posted much this week. My computer has been at my mom's house, where I was visiting since my stepdad was out of town. I was showing my grandfather a little about the internet. A whole new world to someone in his 70s but I appreciate his wanting to learn something new. I gave him my old laptop, but it is so out of date and broken that it just confused him more.
This weekend was nothing interesting, this week actually. My stomach bug is back, I had a viral load drawn on Friday to see what to do next. I can't take another episode like the ones in March and April. Detroit has a hurt paw that he keep licking- he too, got to go to the doctor's and got medicine 80 bucks later. poor puppa. I'm supposed to go into the city tomorrow am for two appointments but I can barely get out of bed right now so i don't think its going to happen. The good news is that my thoracic surgeon said it would be okay fromt heir standpoint to have my chest reconstructed- now I go see a plastic surgeon in a couple of weeks.
My brother Chris called me this week to thank me for going to his wedding. I am really glad to have taken the risk to try and mend fences with him. He has really grown up- I think he needs me almost as much as I need him.
Carrie and I started cleaning her room last night with my well honed organizing skills, but she ate too much and ran out of steam. I think she was in a lot of pain, but she had a shake today and recognizes that she did it to herself. Still looking for a kidney. But the shitty thing is, even if I had a kidney right now, because I have this infection I would have to wait. Going online tonight to research airline tickets and dialysis units for homecoming- something to look forward to.

Oh I fear the worst is possible- my CMV colon bug seems to have reappeared since last week at Mandy's wedding. The "runs" persisted and my colon was bleeding at my dad's for my brother's rehearsal meal. How embarrassing and painful. I'm going to have some bloodwork and probably a colonoscopy real soon to see what treatment is best. I was just starting to feel better and now a set back.
I've had so many other things to concentrate on, namely weddings and other hapy occasions, that I haven't let it get to me. My diet was kinda out the window so I'm sure I'll be scolded for that, but that will be my goal for my September bloodwork.
Since the blog I wrote about my brother Chris' wedding was deleted some how I will rewrite about that and of course add my commentary.
The wedding ceremony was at my dad's new house on Long Pond Road. The yard looked splendid- I must say Anne must have spent HOURS UPON DAYS preparing it. THe ceremony was on up on a steppe cut into a hill they have, right next to a stream that flows into a fish pond. The family was seated in a semicircle around the pond and the other guests were seated under a tent- it was a hot day. Chris had his brothers- you know I always forget about the Ellis brothers he has, only thinking of Dougie- as groomsmen. They wore these great blue shirts and khakis. Mike Miraglia, who I remember as Mikey from the Beach Club days with Mandy, looked crisp ina buttercup yellow button down. Tiggy's sister Bradley wore a buttercup yellow dress and daisies in her hair. Tiggy looked radiant and not that big considering she is 7 months el prego. Her dress was flowy and had a bit of a train in the back. it was the dress she had already purchased so she just had them put panels in to expand it.
My grandfather was supposed to escort me in the family procession...but he did not go. You see, Chris has been Ellis-Balboni all his life and Chris explaeined to me that he never felt like he was really either, he wanted a new name to for a new identity and a new family, so he took his mother's maiden name of Fraccalossi. Since they have no males for Chris' generation, he will be carrying on that name. I can respect his choice, he seems to have thought it through, what I don't think he did well though was share his rationale to his parents and grandparents in a way that they heard and understood. My grandfather is stubborn and old- fashioned in that family and respect are paramount. I can understand that he feels slighted and really more than anything, heartbroken. I know that my dad is hurting inside too- I saw just a little bit of it on Friday night. Chris was upset when I had to break the news that he wasn't coming and I just tried to redirect him by saying that their were problems before and one day won't fix it all. I told him to focus on his beautiful bride carrying his baby in joinful anticipation of becoming his wife no matter what the name was- I think that helped. Chris and I , and I guess Dougie too, have been estranged since Doug and the move and so much other bullshit, but I wrote Chris a letter and I think it was the beginning of some healing. I'm going to make it a point to try to be as close as possible to them.
At the reception, Mike played "Hey Jude" on the keyboard for the couple in honor of their unborn baby boy they have already named Jude. That was really touching. J was my partner in crime and I knmow that she felt awkward at first since Den and Merle weren't there either, but after a couple cocktails, she was on the dance floor in no time.
Sunday I rested poolside at my mom's and today much of the same, except that I got my b12 shot. I need to clean my house and do laundry, all those things I should have done while lounging by the pool. I've been working on my scrapbook pictures I took from all these events! Tomorrow starts another round of dialysis and the real beginning of my week.

I started a whole long blog but it got erased. Now I am too tired to finish. Why are there four pictures? Another blogger problem

So this week has been hectic and I have neglected my blog. Mandy got married on Saturday and was in town all week, so I was trying to be as useful as possible to help her get ready for her day. The festivities included a luncheon, a beauty day, the rehearsal and dinner, the wedding and a brunch, which I ened up missing. As luck would have it, my stomach was on the fritz, perhaps because I still have some CMV left in my colon. My viral load came back slightly elevated. I'll have to have it repeated. Anyway, I made a quick mental note of the location of therestrooms, and became friendly with the portopotties at the reception. They were the cleanest I have ever come across (until I wass done with them- hehehe).
The wedding was beautiful and easily Plymouth;s social event of the year. Mandy as beaming and Ted's smile lit up the room. Both sets of parents were spilling over with pride. I had a blast with the bridesmaids: Kate and Cyn, of course, Meredith and Davey's wife Stephanie, who I would have never imagined could be so much fun. I was a little disappointed that my feet were swollen. Dialysis that morning didn't fair so well and I had to get off early because of my stomach upset. But I kept my shoes on the longest and didn't let that keep me from dancing up a storm. Darryl and my mom also danced the night away and had plenty to drink. Darryl was the funniest I think I have ever seen him.
I got a great boost of confidence by the compliments I got after I toasted the couple. I had some idea of the general theme but I kind of just spoke from the heart. One of their friends from San Diego remarked that if toasts were like vaults, I was Mary Lou Retton and I nailed it. That was original and good for my ego since I have been a little blue. Considering my health status, I think I looked pretty good, in the pictures I have at least.
Well, the love search continues. Not even really a love search, more like a longing for a companion. Back to match. It seems Steve would prefer to be friends. I think I may have insulted his Camaro or Revere, but a cliche is a cliche and it was good practice.
Next weekend is my brother Chris' wedding and I was invited to the rehearsal surprisingly enough. I'm glad they wanted me to be a part of it. Carrie is in Florida so I am staying at my mom's for company. There was a huge lightening storm last night and I lost my electricity. I didn't like being by myself with no phone or lights. Maybe I am a whimp but since all of my medical emergencies have been at night, I get wicked anxious. My sleep has been better- still not really motivated to do anything. Just waiting for school to begin again and hoping I'll get approved for financial aid so I can go.
More tomorrow...