Wednesday, December 28, 2005

WOW- I hadn't realized it had been so long since I posted. It was a great Christmas and although my pain is still making me grumpy, I got plenty of rest and things seem to be improving. I spent the holiday at my mom's and I didn't have my computer, then I lost my cell phone so...I didn't get a chance to call or write to friends and wish them a happy holiday. I'll be catching up and writing an update since many of my emails from friends are requesting an update. The only thing to really report is that I have to go to Boston twice a week during the immediate post-surgery time. All my tests indicate that the kidney is doind well. I still have some swelling over the kidney, you can actually see the outline of it under my skin. Of course I am one to panic but I guess rejection is not a big deal with the kidney- they just give you a boatload of steriods. My labwork indicated that I might be dehydrated, but it could also be something else. My creatinine, a measure of how well the kidney was doing, was creeping up, however, my level this week was awesome .8 on a scale ranging from .5 to 1.4. I don't want to tell you what it used to be (over 6) when I was in need of dialysis. Apparently, if they have questions about your kidney, they do a biopsy. Hmmm... Doesn't look like we'll have to cross that bridge right now. I'll write more later. Happy New Year.

Monday, December 19, 2005

I HAVE BEEN A BAD BLOGGER THIS PAST WEEK. AS you can imagine, it has been a week of major adjustments and since I am home now (yippee!) I am retrying to reclaim my space. This is easier said than done. It takes great effort to get out of and into my bed. I am swollen from all the fluid they pumped into me and my pain meds weren't strong enough. It seems now though that I am on the right track and I am so thrilled. I am reassured that the water weight will come off, I have gone from 146 to 128 in a week, but I can still feel it in my joints and I have trouble climbing stairs and walking any kind of distance. I finding ways to keep myself comfortable and my mom got me snowman flannel sheets for a special homecoming. I will have to go to 2 or 3 medical appointments in the next threee months. They keep a close eye on you top make sure that everything is going properly. When I got back from the hospital, my car had a flat tire. It's not too bad now since I am not driving and tend to be a bit housebound. I thank everyone for their prayers- what power! What a Christmas present! More later...

Monday, December 12, 2005

I would never recommend having 2 surgeries in one week, nevermind 3. I was trying to wrap up my 2005 medical needs, so I consented to having a gyn procedure to fix up those damn abnormal cells I get and then consented/resented getting a fistula put in for dialysis access. I was exhausted and just wanted everything over with. I came out of the fistula procedure and waited for my mother to deliver my first meal of the day- a bagel. But for some reason, it was taking her a really long time. It turns out that when the nurse called the day surgery family waiting center, my mom had been called to the renal dialysis center to talk to one of the doctors- now? I thought- I just wanted to go home, with my bagel. Little did I know what was unfolding.
While I was getting my fistula, on the opposite coast of the US, Ted Fates, my dearest friend Mandy's husband, received a strange blanket email from a colleague stating that one of his friends was on life support and a willing organ candidate looking for a recipient of A+ bloodtype already listed with UNOS. Ted sprung into action, calling Mandy and Mrs Rushforth who set the ball in motion with the details and making the calls, not sure what the email was all about, but not about to let an opportunity slip by. My mom got the call from Jan in the day surgery unit and went upstairs to see if it was possible. The two hospitals conversed and the plan was set in motion. The renal doc looked me over and stated that I was probably in the best shape for surgery now. She would admit me, give me a brief dialysis treatment and work me up while we confirmed independently the typing of the candidates sample. A lot was still up in the air and I wasn't sure if this was the right time...was I ready? I couldn't turn this down, too much of God's plan for me was unfolding. Pretty much everything was a go. We waited for the paperwork to be completed and for the organs to be harvested as we learned more about this kind man's life and the events that brought us to this point. His wife had a blog, on this site, that detailed their tragedy: It was a six hour flight for the kidney from California and Mandy was on her way as well. No way she would miss this one. At 9:17 on Thursday Dec 8th, the first incisions were made. The kidney went right to work, it was big and beautiful and healthy. Everyone was happy with the results. I have ballooned up, per usual from the steriods, which I am told and know from experience, is normal and that as I accept the kidney and adjust, the water will come off. My emotions will stabilize and I will begin again.
I have had many visitors and well wishers and once again I feel that life is one set of miracles after another. Even though my emtions have run the gammet I know that I will choose to honor the legacy that this man has granted upon me. My outlook has brightened. I immediately called dialysis and told them to take me off the schedule- they were shocked. Figures though doesn't it- right after I get the fistula- I get the kidney. No complaints. I miss the puppa dog and my house, but I have been reassured that I will be home tomorrow or the next day (!)
My progress has been wonderful and I got my tubes and junk out today. I just have some staples holding me in place. I took some pictures, but since I am writing from the clink, I'm not sure they will upload. Stay tuned...

Sunday, December 11, 2005

God works in mysterious ways my friends. I will blog in full detail tomorrow, but for those who have not heard- I have received a lifesaving kidney and I am feeling wonderful. I am saddened by the donor families tremendous loss, who also has a blog page on this site, ironically. But as my friends and family know, I will honor hsi legacyh to the fullest. Health, happiness, love and laughter...Jill

Thursday, December 01, 2005

Not much to write today. I am exhausted from Ct scans in the middle of the night, a horrible dialysis, awful medicine and a very restrictive diet. I haven't deen many doctors really, but apparently they may let me go home tomorrow. Of course, I would still have to come back up Monday and Tuesday for the procedures I have scheduled. I think I will take a nap. The worst day in the hospital is always the first. I would however like to feel better before I go home to that nightmare.

Wednesday, November 30, 2005

Okay, so I try to pull up one picture and five pop up- nonetheless enjoy the picture of me and Courtney at her baby shower this Saturday. She is due with a girl in early March and she really seems to have already embraced the role of motherhood. Congratulations Court and GW!

I have been lapse in my blogging for several reasons- mostly because I haven't felt well. What began as a simple ear infection landed me in the Jordan Hospital ER. They had to give me two shots of morphine to ease the immense pain, and I'm no baby. Then I had drops to ease the inflammation. Both did very little. The little bastard tehn moved down into my sinuses and alas, settled in my lungs. Coughing makes me very anxious, given my past and finally I decided that a trip into the old clink would be necessary. I have the surgeries finally scheduled for next week so maybe I'll be in good shape and can still get them done. I always have pneumonia this time of year- I don't know what made me think that this year would be any different. My colon has quieted down- I am happy to report and I'm sure you are happy to read, BUT they are starting me with antibiotics for this lung infection so the chances are great that my colon issues will return with a vengence.

Scott, Audrey, Kristen, Todd and Carrie joined us for Thanksgiving. I wasn't much of a joy though. My head felt like I was in a fish bowl and I could only hear garble and bits of side conversation. It sucked. I also visited my dad's house and snapped some updated photos of baby Jude. I also went to Deb's to check in on them. My grandfather has a new, less restricitve cast and he seemed to be in good spirits. The biggest joy I had was popping some NyQuil, a klonopin, and hitting the hay. Only recently were my nights interrupted by mucus and coughing fits.

Carrie has been very busy with teaching and work. I think that she may be getting sick of living with me, which I can understand since I have little to share about my stay at home- got to dialysis life. She is looking to meet friends and expand her social circle, especially for New Year's, I, on the otherhand, can not commit to anything long term. I was hoping the holidays would perk me up and not be stressful. Maybe the hospital visit will be the vacation that I need.

Thursday, November 17, 2005

There hasn't been much to report about in the past couple of days, but to honor my lovely, loyal reader Shippy, AKA the Southern Monkey, I will update. I finally made it to the Brigham to get my venous mapping completed. It looks like it will have to be in my right arm as they suspected before because my left arm is overused and scarred from the years of multiple needle sticks and IVs. (I recall one time when I was young and at the Floating when Courtney came to visit and they had to stick me 23 times before they succeeded.) I wait for the call to see when the surgery will be planned. I go back to the clink on Friday to see the tummy doc. Of course, not that i'm complaining, but this week has been a good week for the colon. On the otherhand I have a head cold and have been in a zombie-like state for the past 30+ hours. I really need a shower, but my head is clogged so I can't smell myself- it can't be that bad. I hadn't really seen my grandfather because I was in bad shape last week, but I stopped to see him and he is doing great- he even got out and about (see photo above- yes, he is giving the finger, whihc is a good sign he's back to normal.) He would never touch a computer, especially after the dateline special on internet predators, but he is my special person for today. I keep plugging away at this life because I know he is too. I have had conversations with him that I would have never expected.
In other news, the Kitty Kat Klub president from the old TriDelta days, Dr. Allison Kanter Agliata, had a baby girl, Lia Brooke on November 8th, many well wishes to her and her family- way to go DAN and his mighty seed! I haven't had the opportunity to see baby Jude again because I don't want to go over there all germy and I know they are settling into a routine. Happily, I managed to keep myself out of the hospital for the time being- the holidays are usually tough and I usually get pneumonia so I'm doing everything I can to stay well as long as I can. I may do a lot of my holiday shopping online to avoid the germfest that is the mall. I anticipate a lot of christmas cards this year to thank and reach 0ut to all those that supported my supper club. Since I am disabled and broke, I plan on creating some gifts this year- so if your sucks- know that its at least from the heart.
My prayers go out to Jenn Cross still, besides her dad struggling with cancer, her mom was recently in the hospital with diverticulitis.
until next time...

Tuesday, November 08, 2005

Today I was supposed to go to the Clink for a venous mapping appointment. This is an ultrasound diagnostic procedure in which my arm veins are measured and "mapped" to look for the best connection between my veins and artery to create a fistula, or access for dialysis. I have a catheter in my clavicle now but they are prone to infection (i.e., sepsis that nearly killed me in March). Since I have no immune system, the doctors are surprised I have done so well. I say iwas supposed to go because I didn't make it. I got up, showered, set my coffee pot, got dressed and was about out the door when BAM! colon blow! I was in the bathroom so long that there was no way I was going to make it in town and rushing would just cause me more distress. I called and explained, but now I have to wait for the next appointment. I guess maybe I am a bit of a mental case, just thinking about going up there causes anxiety. What in particular I am anxious about- I'm not sure. maybe about being admitted. Maybe that I'll get news I don't want to hear. Maybe that I'll have to experience something painful or embarassing, though that is nothing new. I didn't sleep the night before, and I am not taking any Ativan or other sleep aids. Lack of sleep is making moody. I went to my old shift of dialysis, which literally is like night and day. I like the night shift much better. So I am going switch to the new center or to the other shift. It turns out that a nice woman Nancy was given too much heparin, took a fall when she got home and nearly bled to death. This is the third incident that I know of that has occured at this center, including myself this spring. It was a year on the 4th that I have been doing dialysis and I am still looking for an acceptable and willing donor. I have to check into the situation for my friend Jenn who wants to be tested. My mom is losing weight and not drinking to see if her blood pressure goes down. She is doing awesome and I want her to be healthy even if she isn't eligible to give me an organ. I am very proud of her efforts. I don't know if I could be a mother, well I know I can't physically, but to be that sacrificial.

Detroit got a bath today too- he wasn't very happy. He keeps licking his paws. I looked and there is no burr or sore spot. Does anyone have any advice of how I can make the puppa stop suffering? Please post.

Sunday, November 06, 2005

For the past couple of days, I have spending time with my grandfather as he is recuperating from his patella tendon repair. He is expected to be in an ankle to hip cast for 6-8 weeks. I expected him to be less mobile, but he has been up and walking to the bathroom, out to check the mail, around setting lights, etc. My aunt Deb arranged home health aides until Wednesday but he really doesn't need much help. The concern is more about him falling getting out of bed at night. He has plenty of friends that come and visit during the day so he is never alone long then. I usually funtion best in the afternoon so I have been going over about 4pm and I stay until 9:30 10pm, as long as I know Detroit can hold his bladder with no accidents. I know it stinks for Papa to be sick, but I have really enjoyed spending time with him. It stinks that something bad has to happen for me to realize it. I think I got my fighting spirit from him. He has beaten cancer twice. He had a motor home fall on him while changing a tire. He totalled his motor cycle in Sturgis. The one battle he couldn't win was my grandmother's brain tumor. She was a fighter too, she had girly cancer and had a hysterectomy, she had a heart attack and kept fighting, but the tumor got the best of her and she lost her ability to speak and complete thoughts. Seeing my grandmother struggle and to lose her, took away his faith. I think he is angry with God, I have been angry too, in my life, but I have also reconciled that God's will will be done and his purpose is not known- you ahve to accept that. I just finished 90 minutes in Heaven, a memior about a man who got in a terrible car accident and was dead and then came back to life to find new challenges, including pain and depression, and a reason to live. He poses a lot of questions I have had myself as someone trying the best they can just to simply exist, simply to be ....

Today, Saturday, even though it really is Sunday morning, my friend Jenn Cross came to visit. See picture above. I have written abnout my dear friend in earlier posts. Jenn has been back in the US to care for her father who is fighting cancer. He is very sick, yet Jenn manages to aska bout my situation and offered to be tested to see if she is a candidate for kidney donation for me. Just the thought is touching. I have a picutre of Jenn behind me in line for First Communion, both of being North Plymouth gals. We really grew to be friends in junior high when we were both hospitalized. Jenn has ulcerative colitis and has been very healthy to have kept it in check over the years- she knows the hell prednisone can cause. I can go years without seeing Jenn and then catch up with her and no time seems to have lapsed. She is a true friend. I am lucky to have so many friends as I do. She's also writing a book and she is prodding em along in working on my book. She is the original blogger: see

Today I ate all the salami my grandfather had in his house and I am very swollen. It's nearly 3 in the morning so I should probably head to bed and elevate those piggers. 'til next time...

Wednesday, November 02, 2005

I have had a terrible relapse of my colon issues since I have last written. October 29th was particularly troubling. Not only because of my poor health and spirit that day, but because it was the first snow. It crusted the leaves with almost an inch and left a dusting on my jack-o-lantern. I wonder what the Winter will be like- as harsh as it was last year?- Nonetheless, I have been continuously growing grumpier by the day due to an erratic sleep schedule and the trots. I barely leave the house. I barely muster the energy for proper hygiene practices, just when I find my own scent sufficiently disconcerting, do I find the strength to take that essential bath. Anyway, I put myself back on my medicine and decided maybe I shouldn't play doctor this week. I am recovering. I think sometimes I am just complaining too much and need to get off the sinking sulking ship and get aboard the Good Ship Lollypop. Other people have it worse right? SO what if I don't get my vacation to Florida and Homecoming. I still need to send out the mass email with my regrets to those I planned on redezvousing with.
So off the subject- for the past two days I have been experiencing extreme right leg pain, so much so that it hurt to walk. My pain tolerance is pretty high and I know its not my imagination. I had taken a fall last week but I landed mostly on wrists and those bruises have healed. I am riddled with bruises on my legs anyway from the anemia and diabetes so there weren't any tell tale signs of specific injuries. On Halloween, I almost had Carrie escort me to the Hospital for an xray. Today I went to do errands and stopped by my mom's where Darryl, my stepfather, asked about my grandfather's leg, I had no idea what he was talking about ande he said that he heard that he broke it this weekend. Well, right away I went to his house, which was dark, and then went to my aunts,a nd she said that he busted it and he was in the hospital. He injured it on Sunday and had surgery on Halloween. THE SAME LEG THAT WAS HURTING ME> Now, I have read the Celestine Prophecy several times years back, which for those unfamiliar, is a spiritual journey set in an adventure much like the Da Vinchi Code, this is the pre-millenium version. One of the tenets of the CP is that there are no coincidences. Rather, the world conjures these experiences to give us a message, or act as guideposts that lead us to a high purpose. My message is that I need to spend more time with my grandfather. That is exactly what I will do in the next coming weeks since he shouldn't be alone in a cast hip to toe and mentally, only leaving the house for dialysis is not healthy, so perhaps, I have a message for him and his injury at this time as well.

Wednesday, October 26, 2005

More pictures of the Fall changes to the trees. Most of the leaves were blown off during the Nor'easter. The high temperature today is 49 degrees with a low near freezing. Yuck. No snow yet though, for those of you who asked. Good thing I have new coat to warm my bones. I didn't do much today but sleep. I was up late doing laundry and (shocking) watching the World Series. When I did settle down it was three and I was finally graced by sleep at 4am. Needless to say, it was probably a result of too much caffeine. Started a new chick lit book, mindless enough to rest my brain but to keep me interested. off to read it...
Wow! I didn't realize it had been so long since I had blogged, nor did I realize that people were actually reading it on a regular basis- great. This week has been uneventful, just trying to cope with the stomach and sadness as it is evident that I won't be able to make it to UCF Homecoming in Orlando as I had intended. Dialysis require upfront $ for the 20% that Medicare doesn't cover upfront, I have to get a fistula, venous access surgery, for dialysis during this time period, and its flu season: a plane during flu season is not the best place to be for someone so immunocompromised such as myself. BUT my main reason, no pun intended, is my butt, and my fear, which is completely rational in my humble opinion, that I'm going to relapse and prolapse and have a colon emergency or embarassing situation. I stopped taking the vancomycin and probiotic therapy for the colon infection and things have actually been a thousand times better. It was either that or my mom's magic pancakes that she made me on Sunday that created such improvement. I blew off some steam on Friday with a trip to Old Navy, I needed some shirts that weren't stained by my shakiness or dialysis. I don't want to look like a scum bag, even if its just me that sees my image in the mirror. What is it about shopping that always makes me feel better? I had saved some money,but since I am not going... I haven't talked to my friend Jenn, who is likely in Boston spending time with her much ailing Father, please keep him in your prayers beside me. Today, Carrie and I went out to dinner at Bugaboo Creek Steak House- I left my Coach Signature Crusher hat there like a dumb ass so I'll have to get it tomorrow. I have been on a Diet Mountain Dew Kick since Diet Coke has too much phospherous in it and my labs get thrown off. It gave me the energy today to get what to me seems like a lot accomplished. I can't tell you the last time I was brave enough to actually eat in a restaurant- take out- yes, so that I could be close to my own toilet, if you know what I mean. So I borrowed some of Hooker's ativan last night to help with sleep. It's amazing what a good night sleep will do for you. I'll have to see the doctor to reevaluate my sleep aids to get back in a normal swing of things- three hours at dialysis just isn't enough. Even that has been restricted since the old man they called Herbie has been praying very loudly the ENTIRE time I am there. I was going to ask (politely) if one of the nurses could ask him to pray to himself, but just when I was about to- the power went OUT! This was before the Nor'easter, so there was no weather related reason that caused the outage. I decided that it was God's way of telling me to stop being such a jerk and give this guy some peace. I guess I'll just have to start bringing headphones. I guess I could use a little prayer myself. But tonight I'll be thinking of my Friends in South Florida, who are suffering, again, from a hurricane.

Tuesday, October 18, 2005

Carrie and I tried to take some Fall pictures of the pets bu they weren't so cooperative, except for the cat who wanted to be in every picture. My main problem is the shakes causing blurriness in the photos- editing doesn't really help the image distortion. Any tips-amateur photogs?

I have had so much time on my hands that I have at least not wasted the opportunity to watch the Fall unfold before me. It is ironic to think that the beauty of these trees is in their time of death. I did very little today. While at dialysis, an old senile man prayed the Hail Mary over and over outloud for two and a half solid hours. My stomach was doing ok, and then exploded and I left dialysis early- they were out of toilet paper and I didn't want to risk it. I am trying to accomplish at least one goal a day so that I can mentally feel like I am prodictive and contributing something meaningful to the day since I get up and about around 4 in the afternoon these days. It's embarassing to say. So my accomplishments today were cleaning the bathroom, vacuuming, and setting up dialysis for my Florida trip. I have to decide if I am going to take the second part of Fall classes- I signed up for one. Right now, $ is up in the air but most of all my stomach. I don't know if I should just wait until the winter since I would have to miss a couple classes due to my Homecoming trip. I guess I have a lot to think about... any advice?

Sunday, October 16, 2005

It's a gloomy day in Plymouth, although it's not raining. We had 9 solid days of rain and a lot of local towns are flooded. I'm not so worried about it here since we live on a big hill with no water sources in the region besides the ocean which is two miles away. It's very windy today. The cat tried to sit by the window and got blown down. I am not mtoivated to do anything today, which I keep telling myself is okay, but makes me feel like a loser. I probably should shower and vacuum, but I'd rather go back to bed, even though I did just get up like an hour ago. Even Carrie got up and out and went to get her nails done and went to the mall. I wasn't even motivated for that- I kind of wish it was raining. Instead, I am watching a TLC special on midgets, I mean "little people" to be politically correct.

Saturday, October 15, 2005

I finally made it over to my brother Chris and his wife Tiggy's house to see baby Jude Dylan above. He is adorable and it has been so long since I have held a baby. My brother is totally pumped to be a dad and I don't think the reality of it all has quite set in fully. Tiggy looks good for giving birth just a week ago. Chris told me that when they got in the car to go to the hospital, when they turned on the radio "hey Jude" was playing. What a coincidence! My brother is a big Beatles fan and is what I would describe as an old soul, with this in mind, it was also ironic that baby Jude shares John Lennon's birthday. I am hopeful that I will be able to watch this baby grow up and that I will be a good aunt to him. I have a nephew!

Friday, October 14, 2005

It has been raining here for more than a week. I am home from the hospital and am physically recovered from the colonoscopies, though mentally, its a different story. I still haven't been to see my nephew because I have been under this horrible weather, but I hope I'll be up to it this weekend. I have custody of my mom's digital camera so I'll be able to post some picutres of the boy. My stomach is a little better, though it still has flare ups and episodes. My sleeping pattern is skewed because of the weird hospital schedule. The only thing I have accomplished this week was a haircut- I cut a little fringe of bangs, which was like most of my actions, was completely impulsive and random, but the results are not bad. I'll post a picutre of them as soon as I look good enough to be seen on the web. Unfortunately, my friend Jenn is back from her world travels and adventurous life in Espana. Her dad took a turn for the worse- though she seems ready to accept that he is likely succombing to the wrath of cancer, her family seems less likely to see the end of him and more like to be spending the moment in denial. I think tha tmakes things worse later on. But nonetheless, I keep the family in my prayers and don't give up faith because God knows I've been in the position where recovery seems impossible as well and things have turned out for the best. You never know where the soul can summon strenght from in moments of challenge. I wish it was easier to take my own advice sometimes, isntead of me getting caught up in my own pity party.

The picture reveals that Fall is here, even with all the rain.

Turn your head and check out the beginning of Fall in New England

Wednesday, October 12, 2005

I have a lot to catch up on but my stomach is currently on the blink so I will just write the highlights of the past couple of days.
1. My nephew Jude Dylan was born on Saturday October 8th. I can't wait to see him but I have been under the weather still.
2. I am out of the hospital, for now. Currently still experiencing symptoms so we'll see what happens haven't really been leaving the house except for dialysis. Luckily, its been rainy so I'm not missing much.
3. I had two colonoscopies last week and they didn't sedate me nearly as much as I needed so I have been very uncomfortable. I had an accident on the way to the pot and skidded on my bathroom floor so my knee is swollen. Could it get much worse?
On a happy note, Courtney got me some ruby slippers to boost my spirits- that did the trick as she drove me home from the clink and shared the good newsw that she and GW are expecting a baby girl in March. Yippee for them.

Wednesday, October 05, 2005

Oh how I miss my Puppa dog. He was happy to see me today, which made me feel loved.
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...

Monday, October 03, 2005

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.

Saturday, October 01, 2005

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"

Friday, September 30, 2005

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

Tuesday, September 27, 2005

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.

Monday, September 26, 2005

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.

Sunday, September 25, 2005

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.

Thursday, September 22, 2005

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.

Tuesday, September 20, 2005

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.

Thursday, September 08, 2005

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....

Wednesday, September 07, 2005

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.

Wednesday, August 31, 2005

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.

Tuesday, August 30, 2005

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.

Thursday, August 25, 2005

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.

Sunday, August 21, 2005

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.

Sunday, August 14, 2005

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.

Monday, August 08, 2005

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.

Saturday, August 06, 2005

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

Tuesday, August 02, 2005

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...

Thursday, July 28, 2005

It's been a couple fo days since I've written, but I have had a lot of my mind. First, I got pulled voer for running a stop sign in downtown Plymouth. Basically, I stopped for the tourist pedestrians that pranced into traffic, but I did a rolling stop at the sign. I got a written warning, no big woop, but come to find out, my Florida license was coming up as invald. So yesterday I dealt with the fiasco that is the Registry of Motor Vehicles.
I'd like my friends to pray for my cousin Cheryl best friend Melinda. I have known her forever as well. On Sunday morning, her year and a half old daughter drowned in the family pool. Carrie and I went over to work with the children and offer support to adults. While I enjoy counseling and being a help to others, I don't thik I would have the strength to do it fulltime right now. I guess I better understand why Carrie is so drained from work.
Dialysis is the morning has been better. I either have had to get up once or NOT at ALL. I am still not pleased with the staff- they are messy and keep ruining my clothes. They aren't warm and fuzzy. But I have been able to sleep there so who cares. I saw my doctor to address my sleep and anxiety. The sleep has gotten better- but the meds keep in a haze in the morning. I need a jolt of coffee to get me up and out into civilization.
School ended tonight, although I still have a final paper to email in. I would have done it last night but I stopped to see Todd, Kristen and Scott, who were home for a wake. And tonight I went over to Steve's for a movie- "Hide and Seek", which I recommend if you like scary movies. Steve showed me pictures of his daughters and you can tell he takes a lot of prode in being a father. There aren't enough men like that in the world. Well, I have doctor appointments galore coming up: ENT, plastic surgery for my reconstruction I am hoping for, podiatry, dermatology and of course, the kidney folks.
Thankfully though, the tickets to Florida are cheap for November so I am hoping to get down for sure for Homecoming. Instead of rushing back, I think I may stay with friends for a while and arrange for dialysis at a center in Orlando. Yippee!
Detroit is looking to go to sleep - so I guess I should too.
more later...

Sunday, July 24, 2005

I'd rate today as an 8, again, getting back up there. I had my real estae class and learned so much. My hand was totally cramped by the end of the day so tomorrow I am bringing my lap top. Carrie and I ate dinner at e the East Bay Grille, I splurged a bit, but I figured I deserved a nice dinner out. My stomach was cooperative today and I slept well. I got a new blanket set for the fall, even though it is still July. I love back to school time. I have to check up on my Fall Northeastern registration. The class, although short and over on the 27th, made me feel alive and social again. I jsut wrote part of the skit for my presentation on Monday. I think I got a lot of the concepts, but of course, the group has the final say. Yolande and Cynthia brought Mandy home for wedding preparations. Mandy, intypical Mandy fashion, took her $5000 WEDDING DRESSED ROLLED IT UP AND WRAPPED IT IN DUCT TAPE TO PACK IN THE PLANE. Mandy is always good for a stroy like this, she would be the same if she didn't pull a stunt like this. She really seemed to appreciate the scrap book I made her. It was from the heart, she knows it. She is my SPECIAL PERSON OF THE DAY. One of the bestest friends I have. I have some more studying to do before class tomorrow. Keep your chattel to yourself~! I'll explain later.

Saturday, July 23, 2005

I haven't blogged in a couple of days. Mostly, I would say because dialysis has been kicking my ass. I had several doctor's appointments on Wednesday, including one with the psyhicatrist to address my insomnia and anxiety. Those days just left me wiped out. I had a paper I had forgotten about Tuesday night, so all in all it was a busy time for little Jilly. I have been trying to be better at returning phone calls, so I apologize if I haven't gotten to you yet. The big things this week: Date #2 with Steve. Truly a gentleman, we seem to be getting along as we get to know each other. Mandy comes home tomorrow in preparation for the big day. Kate and Cyn will be around too. I don't know why it is that it takes so much effort for all of us to get together. I have my real estate class all weekend: 12 hour days and I am not sure if I am physically up to it. Especially, since I have spent the last two days as a useless human confined to my bed. It will certainly be a challenge. I'll write more tomorrow. My special person of the DAY is REBECCA TAMBINI, my friend who knows the value of the geographical cure and was willing to help me find mine by driving in the bug with the dog all the way to Florida. THese are things you don't forget. Night night for now.

Sunday, July 17, 2005

SO the date was last night and I got home around 1am since it is an hour's drive from Revere, but all in all, I would say that it was a great date. I met him at the FourPoints Sheraton, where there is one of those japanese hibachi restaurants. What a great choice for a first date! Clearly, thisguy had done his homework. We were going to go to the beach after dinner, but it was packed with annoying teenagers and there was no place to park. SO we went to his place, which had a picnic table. He pulls out a full on picnic basket and blanket and candles...He had fruit and wine and cheese and crackers. All things that I love. Dare I say it was a 10. I was a little nervous, still just trying to get my feet wet in the dating pool. I talked to this guy, Steve, a lot on the phone so we already knew about each others stories. We seem to be coming from the same situation so he understands my trust issues as he was cheated on by his spouse as well. I like that he has a career, he is a fahter to two little girls he adores, and he seems to celebrate each day or live by the same credo as I. There's something special about him. So we'll see what happens. He already called and wanted to make plans for tomorrow- so I know he won't be that guy that says he'll call and doesn't.
Today was a really bad day at dialysis. They took off too much water and I experienced tunnel vision, temporary blindness, dizziness, low blood pressure, headaches and muscles cramps to beat the bands. I pretty much slept the day away, staying in bed and not moving my muscles to avoid pain. I haven't had this bad of a day in a long time- I would say it was no better than a 3.
WEll, I'm off to attempt to get some zzzzs. I just had the sweet dreams tea that APRIL sent me. It does seem soothing.

Friday, July 15, 2005

Today was a 6.7. Not so great, colon wise. I wasn't really digesting well, the whole malabsorption/CF thing. Enough said about that. I had to get up twice during the dialysis treatment. I am not sure about the staff on the early shift. There is no cooperation or collaboration. I asked my staff person to unhook me so I wouldn't have an embarassing situation and she told me to hold on- a machine beckoned. However, there were staff putzing around- doing nothing of emergency or great significance. One guy, seeing my pained look of fear as I tried to hold it, you'll have to wait. No, I won't have to wiat, get your ass over here and take care of my needs, so what if I am "assigned" to someone else. Patient care should be priority #1. It is different between shifts. The second shift watches one anothers backs and care for patients is mutual: not mine patient/your patient. I am thinking of using the differences betweens hift as my action project for class. I will be looking at staff satisfaction, employee satisfaction and safety factors. I think I have a fairly good experimental design set up. I love learning and this class lends itself to organizational/ industrial psychology. I know I want to pursue my Ph.D> but in what? Unfortunately, the only I/O programs are in other states- namely Florida, more specifically UCF. I would love to go back, but I don't think the timing is right yet again. Sigh.
I spent the night calculating the cost of tuition to finish the MS Leadership Program in Nonprofit Management at Northeastern University. I applied for financial aid so we'll see how things work out. I might have to pimp out Carrie to pay for school:)
Both doggies got baths today- that was probably the extent of what I did today- other than go to the can. While I was sitting eating dinner (99-takeout), a woman almost drove through my window! She must have hit the gas because she charged over the concrete stop block and hit the bush in front of the house! There are big gashes on the tree. Despite my hostile stomach- I could not resist my temptation for soft serve. I got a small and lopped off the top so it wasn't too bad, okay yes, it was still bad. I find myself giving in to sugar cravings lately, almost like I am pretending not to be diabetic. oops.
My friend Kara (My special person of the day) connected me to Irish Thursdays-a devotional group. Here is a quote that holds particular meaning for me today:

Don't worry about tomorrow, for tomorrow will worry about itself, each day has enough trouble of its own. Matthew 6:34

I am worried about tomorrow: date night. One would never think that I would be insecure in the dating world, but alas, here I am. This guy seems very nice and I have been talking to him on the phone, despite my disdain for such technology. Wish me luck. Sometimes happiness just finds you- lets hope I am in the right place when happiness shows up.
I think I'll finish Hooker's laundry for her. Its hot- our air is not working and its so humid in here. How ever will I sleep?
until tomorrow...

Thursday, July 14, 2005

In search of the perfect pair of jeans...
Today after a delightfully stimulating class on Leading Teams, I ventured to the South Shore Plaza on my way home. I made a rule that I would only go into Filenes, to which I had gift cards left from my birthday. It's always important to set shopping groundrules, lest I shop myself into frenzy. Anyway, my purpose was to find the perfect pairs of jeans: not too long, not too short, just right. After trying 16 pairs on- I walked away with two, neither would classify in the perfect realm so my quest continues, but for now, there pairs fit and are an appropriate length and don't bag on my ass like a diaper. Besides, I had to have something to where on my date on Friday. More about him at a later date. I don't want to jinx it.

ABove is a picture of Dante, my friend Kelli Catani Smith's family dog. He is a giant schnauzer and he is 12. Really a love bug despite his size. He would probably liken Detroit Joe to a chew toy. But I love schnauzers big and small. THE CATANI FAMILY are my special people of the day. Kelli was the only normal one in my dorm suite and we quickly became fast friends, best friends. I have to say she was innocent when she met me and I helped her discover what college life was all about. She loved me despite my illness and took care of me, cut my hair for me, was there through many boys and one little spark plug with blue hair. We managed to convince our parents that we needed an apartment and we moved to the Cricket Club. Kelli has been there through some prety tough times, especially this spring when she visited and I was so ill. Her parents always took me and treated me like I was one of their own. Paige is a great cook and Angelo has taught me so much, an example of what it is to be a dad, not ideal, but what life really is like. Gosh, I am pretty emotional- I guess I should call it a night and snuggle with my own schnauzer.

Until later today, since it is tomorrow.

Wednesday, July 13, 2005

Yesterday, an okay day, probably a 7. It got worse after susnet when I started to swell and bloasted to uncomfortableness. The Gods of Fast Food were punishing me because I ate some McNuggets ont eh way home from getting Carrie at the airport. I was struggling all night, which means, I was n't able to sleep. Then came the dry heaving and vomitus. I had dialysis at 6am and was cared for by Raphael. Not so fond of him so far. First he was rough with changing my dressing, next there was a news flash and he left me in the middle if disconnecting me so I coulf RUN to the bathroom to go wathc tv, then he said I would have to wait to go to the bathroom- oh no yu don't make Miss Jill wait- her bowels do not have patience. When he mentioned something about his country- I tuned him out and cranked out of there early. I am done with people not understanding my digestive difficulities and getting "crap" for it. I had a dentist appointment this afternoon and although my stomch pain persisted my mother pointed out that if I cancelled at the last minute I would probably be charged. The old mouth got a clean bill of health and they even got out the mouth model to show sucular brushing to aid in the care of my swollen gums. This is part of that damn prednsione side effects.
Class was wonderful and although I'm not working right now, I have a lot of experience to draw on. I think I will put the jOhari window up for people to play with. Not tonight I still feel lousy. WHen I told Carrie about the events, besides the wicked animal stories, that happened like the date I have planned on Friday with a person I believe to be a wonderful guy. WE've been talking a couple of times a day and believe it or not, despite my hatred of the phone, we do have meaningful conversations. He is going to surprise me on our date- which makes me excited nervous! I also recounted how fulfilling class is for me. Carrie said, "JILLY'S ALIVE AGAIN!" I guess I go feel more alive, more renewed. These few good things have casta shadow on all the crap. Maybe they will help me get out of my rut. I am being more solution-focused. Instead of worrying about how I'll feel tomorrow- I am concetrating on today. What perspective! No I will go have a bedtime bowl of cereal. MY SPECIAL PEOPLE OF THE BLOG are DJ HAMILTON, who recently sent me his award winning short film "D-Grade", a riot of laughter. I am so proud he took the risk to make his dream come true. THEN< MY Russian MAMA, who got the most appropriate charm for me in her overseas travels: a hope, faith and love charm. I am so blessed to have people that think of me. All that prayers seems to work. Keep it up.
ALSO, if you have a particular scripture verse or quote of special meaning- please post!
"Speed Of Sound" - Coldplay: " A niice mellow tune for your enjoyment 1. Speed Of Sound - Coldplay"

Monday, July 11, 2005

Today was an 8 again. Not too shabby, I think. I was able to do everything I wanted to with minimal pain or effort so that is what qualifies the number. It was a perfect New England summer day and I took the dogs to my mom for a romp in her fenced in yard. Scooter loves the water and my mom hosed him down: Detroit, on the other hand, couldn't get far enough away from the spray. My grandparents visited and when they left my mom and I headed out for Fancy Nails. I was in desperate need of a mani and to have my peds cured, a must in flipflop season. Anywho, I look Ava the Avalon, my trusted coche and the animals back to Chapel Hill prior to going to the salon. AS I was drving up Summer Street, just by the skate park, a busy area for those of you unfamilar with Plymouth, when two adolescents cut out in front of me without looking. I had to jam on my breaks and I yelled out," Did your mother teach you to look both ways!" ( yes, I have become THAT lady (not even that girl, no that LADY)), when lo and behold as I am decelerating the Scooter puppa decides to jump out of the window of my moving car! I am panic stricken and I glance in my rearview to see him transversing the road. Thankfully, because of those despicable children and their poor street crossing manners, the opposite traffic was stopped- otherwise, he would have been poodle dust! There were a group of Harley riders stopped across the street and Scooter scooted over to the ladies who picked him up into the safety of their leatherlined arms. I had to bang a U in heavy traffic and of course all my compatriots on the road thought I was just an asshole driver so no one would let me in. I finally made it to pick him up and said my thanks to the Harley ladues. " Um, you might wanna roll up ya window." (Ya think?) " Yes, I think I'll put on the A/C." and with that my pulse returned to normal. When I got them home to safety, I arrive to the cat's mess she made knocking one of my plants over. Dirt everywhere. Always after I just vacuumed. I got some fresh water and stuck her in Carrie's room. The door needs to be shut anyway because the kitty litter stinks to high heavens! Transplant recipients can not empty kitty litter because the litter carries bacteria harmful to our next to nothing immune systems. Hooker returns tomorrow and can deal with the pets. 3 is way too much for one to handle. For me, right now at least. Like me, these pets are high maintenance. I did some laundry and ate at AuntAurie's house. When I checked the messages I had a couple messages from two different gentlemen. For once, not a collection agency or my mother!

School tomorrow. My wireless router is disabled for some frustrating reason, but I figure I should go to bed rather than worry about it.

Sunday, July 10, 2005

Today was an 8. I had dialysis at 6am, and I was able to sleep for the duration of the treatment. I only had to be disconnected once to go to the bathroom. Perhaps this new schedule will work out. I am trying the tips for sleeping posted on earlier dates. I got some decaf tea in my care package from April and I enjoyed a cup of cammomiele mint before bed last night. I am trying to get into a routine for sleeping, going to bed when I feel sleepy and not punishing myself if I am struggling. Last night I slept rather than blogging.
Yesterday I went to visit my friend COURTNEY BUTTNER BRIDGE and her husband GW in their gorgeous new home in Sandwich, just over the bridge. They are my special people for July 8th. I have known Courtney since we were both 6. She has grown into a successful, smart, independent woman. She married GW (Gardiner Winthrop) last September. Seeing them together makes me believe in love again. GW is sincere and good natured, and while I would have never expected him to be Courtney's "type"- I realize that sometimes we are looking for the wrong thing and when we stop looking, love is in front of us. As one of Courtney's longest friends, I was concerned, as I would be with anyone she would choose, with her pick. But seeing how he dotes on her, listens to her (rare for men), and genuinely cares for her, I have no doubt that they make a great partnership. There new house is enormous and beautiful, offering plenty of space to raise a family. I am so happy to have them as friends.
Today was productive. Today's special person has to be my MOM, who went wild cleaning my Chapel Hill abode. I helped too of course, but then I realized that she was just re-cleaning everything that I did. She seems to enjoy cleaning so let her go buck wild! After the frenzy was finished we went to lunch at the Hearth and Kettle, which by the way has fabulous salads. We then did other errands like banking, dropping off money to Mrs. R for wedding attire/picking up the shoes for Mandy's wedding, then we went to my Aunt Deb Gilbert's house to get my bridesmaid's dress fitted. We ordered a big size in case my kidneys left my bloated- however, I am no size 16! So Deb has to take it in to a 6... I guess better to have it too big. Mandy's wedding is July 30th and is going to be quite the event- her mother has put for so much effort and really wants Mandy to have the best day of her life. No detail has been left undone and there are even a few surprises. I am really excited to be a part of it. I am tooling with a toast in my head- for the reception- since they asked if I would do one. I must say, I think I am pretty good with public speaking and I might look into Toastmasters.
To wind up my day, I did another painting. This one of geraniums, seems to capture light and dimension a bit more than the prchids I did last week, which seems to have good color but looks flat. I think I'll look into a class.
I haven't heard from Carrie, besides her post on the blog. I hope she is doing ok. I think it is best for her to be away from the toxicity of Florida- she seems to be more independent in MA. I also think it is great for her to be developing a close relationship with her aunt. She needs a good role model- as we all do- in her family. The dog is being better, but still requires constant supervision. I found him this morning with cat litter all over his face- I dry heaved. It doesn't take much for me to throw up. Even though I am home by myself- I am doing ok and haven't had any medical emergencies (knock on wood). I have been active so that has made me feel better. I am slowly finding things that supprt my mental health, which helps my physical self.

Thursday, July 07, 2005

Yesterday I didn't get a chance to write so today will try to cpature both. I would rate both days as about a6.5 physically, but more like an 8.5 on the mental side. First, I got my new china cabinet delivered. Though I have never really collected anything, I found myself really attached to the china. There's something calming, perhaps the serenity of its elegance, about having it in order and in place. Its like me, delicate, but it can take more wear than you'd expect. I spent the night after class putting together the display. Its a relief since its been packed away for like 8 months.
The big news from yesterday was that I had my first class. I'm going to Northeastern University here in Boston. This class is part of the MS Leadership program. I am thinking about completing the degree in the Nonprofit Management program. It felt good to be a part of something social with likeminded people. Not that I don't like the old people at dialysis, but... The class is about Leading Teams. Part of the class grading revolves around processing and journaling and encorproating it in a reflective paper- I am all about that since that is primarily what I am doing with the blog.
So- reflection on effective teams:
1. Effective teams really only develop when the corporate atmosphere is supportive of the work the team is doing. A team can be a team in name only if the upper management empowers the team to work and make decisions. A team is doomed if they are demeaned and disenfranchised: successful teams feel that they are making a contribution. As I draw to mind my personal team experiences, of course I am citing all the negative aspects in TriCity, and all though Girls and Boys Town had an effective service and operation, they have issues too. Management team felt like we were constantly defending our work. Like we weren't given the opportunity to create opportunity for ourselves, those we supervised and ultimately the families we served. In order to create change, there had to be "proof in the pudding," with numbers and criterion. While I understand the rationale in this approach, sometimes I think that if something, a system, a piece of the adminsitrative puzzle, is askew, it deserves discussion about how it could be improved. TriCity was almost the opposite: you could meet and come up with plans, revisions, etc. But in the end, the process required multilevel layers of approval. Often the work plans for teams were created by people who had not idea of what day-to-day operations looked like. But because they were in the roles of organizational leaders, they made the choices, whether informed or not. I think the worst part of TriCity was the toxic environment: no one ever praised or gave recognition that, wow, your team did a great job. IF anything I would say that in the team process, the group built cohesion based on the fact that everyone felt the same: overworked, carrying the burden of unrealistic expectations, as we trotted to unproductive meetings and then bitched about it. That's a good reflection. I have to say though, I still love to get gossip from Jamie about the goings on. We both laugh at the shear madness of budget cuts, staff issues (usually demotions there), and the hoops one has to jump through. That company, my friend, is one sinking ship.
Today was ok too. I had dialysis at 6am and while I was hoping to get some sleep there- that was not the case. I am trying to get my sleep cycle back to normal ( I will be trying April and Rebecca's tips) so I avoided an afternoon nap, although the rainy day made for the perfect nap scenario. Instead, I finished a project I was working on for months. Its a gift for Mandy and I put a lot of effort in to getting it just right for her. My mom was nice enough to visit and deliver a freshly dry cleaned dress.
Scooter Pie, Carrie's toy poodle, ate my ATM card. The bastard( shameful Puppa pictured above) got up on the couch, fished it out of my purse and proceeded to chew it up. It'll be 7 days before I get a new card. I think he must miss Carrie because although, he likes to chew and does bark at night- he was howling ALL NIGHT. At least there were no cat mishaps today.
Until tomorrow...

Wednesday, July 06, 2005

Today was a 6. On the lesser side of 6.
Why a 6? Well, the old colon was in an uproar tonight and as I might have suspected previously, I can very clearly associate it with excessive use of milk products- therefore, I fear the worst: lactose intolerance. I made stuffed shells, an eggplant lasagna, and a batch of meat sauce this afternoon as I was feeling quite domestic. For dessert, I had a bowl of corn Pops- and it wasn't much longer before I experienced pops of a different kind. Yikes.
I still haven't found Mr. Right on and I have taken to being upfront about my health concerns to weed out the creeps. The best email message I have gotten so far was the guy who said that if they sold me on, he would buy me and pay extra for overnight shipping- luv-lee...
ohhh, my stomach is getting upset. I'll have to write another time. This could drop today down to a 5...
"Work It" - Missy "Misdemeanor" Elliot: "1. Work It - Missy 'Misdemeanor' Elliot"

Tuesday, July 05, 2005

Today was a 6.
I wasn't awake before noon. I resorted to 2 mg of ativan to sleep last night afterall. So I barely remember the mroning hours at all. I do recall my mom delivering some Marylou's coffee (thanks), but any events prior to my one o'clock shower are awash. At least I got clean today. Then I spent my day at dialysis. I got up twice to go to the bathroom, which they always seem to frown upon. Not Tracy though. TRACY is my special person of the day. She is the quickest at getting em off the dialyzer to go to the can- she understands that it is an issue of an dignity and urgency and treats me and my upset colon with respect. We appreciate that. All the old people had their red, white and blue blankets, sweaters, socks, etc. to show their patriotism. Some of them look as though they might have been around 229 years ago for our nations birth. I sat in my chair and nodded off without a pillow. And then, like in a dream, my mother appears with a plate of chocolate covered strawberries- can this be real? LIke an angel, she made the treat for the staff to thank them for caring for me. I have had a pretty rough time of things since I have been there, including the overdose of heparin I got, but the staff looks in on me to make sure I am mentally well and physically, not well, I guess, but stable. I took a strawberry and fell back asleep. If there is any special person in this world I have to recognize, its my mom. I'm afriad I don't thank her nearly enough for all her sacrifices. I know she'd give me her kidney were her blood pressure not so dangerously high. I am so blessed to have a mother like her.
After dialysis, I met Carrie at the Galletti house for some din din. Then we picked up J Bird and headed to the waterfront for some 4th festivities. We spotted money on Nana Rose's lawn (AS a Balboni I have the gift of spotting money from a great distance). I turned the car back around and sure enough, it was a $20. I took it as a sign from my grandmother to have the first round of drinks on her. Though I did consider that maybe my deaf aunt Diane had maybe dropped it. We all discussed it and decided that finder's keepers rule applied. We parked at Dr. Kerr's office in my handidandycap spot and walked to the Crow's Nest, which sucks, however, it was a delight for us because they had available outside deck seating and we got drinks and nachos while the fireworks blasted. All I remember about last 4th of July was that I had kidney failure for the first time. This year was better. Next year will be better still. I have tomorrow off then school starts on Wednesday- Carrie will be off to Florida. Can I be home alone?
Until tomorrow....
"Untitled" - Simple Plan: "Sometimes listening to music can connect us to our lives and the events that challenge us. Sometimes I feel this way .How could this happen to me? Untitled - Simple Plan"

Monday, July 04, 2005

This is probably the first time I have blogged before midnight. My sleeping sturggles persist though I did get some shut eye last night. Today was a nice day by my mom's pool, until I started to swell. My feet are uncomfortably huge and tomorrow should bring relief because of dialysis. But there is so much crud in my body every muscle is stiff and cramping, I can barely type. So tonight's blog will be brief. I was planning on attending Plymouth's parade (I was Parade Grand Marshall in 1999.), but I am thinking better of it to save my strength for fireworks. Have a nice holiday- Celebrate your independence.

Sunday, July 03, 2005

Technically, I didn't write a blog entry yesterday. My entries have been written early (3am) on the days I blog so, oh well. Yesterday, instead, I found that my lack of sleep finally caught up with me and I enjoyed some natural sleep. It seems I have run out of Ativan, an anti-anxiety drug, upon which I was relying for zzz. However, now is as good a time as any so I'm getting of the junk.
Some noteworthy things happened the day I didn't write so I'll catch you up.
First, the special person is ALISON MARTIN. Alison went this Thursday to be tested to see if she is a kidney donor. Alison is my oldest friend. We played when we were still in diapers. She is the type of friend who you can go a year without seeing, but then when you do, it's like it was just yesterday. She is a confidante beyond words and has seen me, like so many of my special people, through the dark times and has joined me in celebration of the good. Beyond all of this she is one of the best mothers I know and her son CONNOR, now 8, is polite, well-behaved and smart as a whip. I am so proud of both of them and feel lucky to have them in my life.
So yesterday I visited the mulch factory and checked in with Johanna, my aunt's wife's daughter who I simply call my cousin, who also works for the family business (Plymouth Reprocessing). Johanna was going to call my stepmother Anne and find out about the bridal shower, or to be more specific, why I was not invited. J said that she hadn't had a chance to talk to A, but that I should just go anyway, after all it, who would really care, it was another present, right? However, I thought better of it and asked my mom for counsel. She advised that my plan could backfire and be a lot more painful. SO I bit the bullet and called Anne myself. I am an adult and although family relations, especially my exclusion from them, can be difficult, its better to be upfront. I think deep down I was hoping that it was a mistake. But,alas, no: I just wasn't invited. I told Anne I had heard it was Tiggy's shower on Saturday and was there a reason I wasn't included. She basically said that my brother Chris had made the invitation list and he made it based on who he thought should be there. After hearing other rationales and a bit about how my brothers and I aren't close, it became clear and those unsettling feelings I had last week came back to mys tomach: the boys really don't consider me to be a part of their family. This makes me astonishingly sad, I will admit, though I would probably never admit it in public. My baravdo is too much for that. Even though there has been a bit of a rift with the boys since I relocated to Somerville in 2002, I would never write them off and not claim them as family. Perhaps, they have never known loss or emptiness related to family. Though I have to claim responsibility for my own actions, Doug really f*cked things up for me with the Balboni side for a long time, too long really. I haven't gotten a chance to recover with Chris and Doug, unfortunately. Guess they won't be stepping forward anytime soon to volunteer a kid(ney). No that's selfish.
I think that I will begin the healing process, or that's why I hope it will turn out to be, with some letters. I think I express myself pretty well- why not give it a shot?
I got up at 12 today, which is really yesterday now that I see the time, and decided that I should join the world. I could have slept the day away, but then I wouldn't sleep tonight, you know, now since I haven't gone to bed. I just got a phone call from a match guy but do I want to talk to someone at 1:18am? I think I'll see how I feel when I finish this. I went to my mom's pool, where my mom, my grandparents, my cousin Cheryl and her daughter Hannah. It's funny because Hannah thinks my real name is Jilly Bean since that is how my family refers to me. CHERYL is my special person of the day. She is my most normal relative of my generation. She always checks on me and is just as cheerful as I am. She works hard and is successful. Though she had a great husband, Scott, she is the epitome of an independent woman of the new millenium (now 5 years old).
When I got home, I painted the shot glass shelf I got for Carrie's collection. I re-painted the believe sign I have in my living room then, feeling inspired working with all the paint, I did a canvas of orchids (see above). After I went to Ziggy's for a twist soft serve ice cream. I am not supposed to have ice cream or chocolate according to my kidney dietary restrictions. I had to say "screw it" tonight. I have probably been saying that too much lately. It's that wicked,wicked drug Prednisone that leaves me with horrible cravings to the point I would chew my arm off just to have the taste I desire. I don't wish Prednisone on my worst enemy (Ok- maybe I'd wish it on one person).

Well, it's now 2:09am and I am trying to get myself off to bed. Then plan is to work on achieving unadulterated sleep first, then trying to get the time frame adjusted. Wish me luck- please post anything you have found successful in conquering insomnis- there seems to be a bunch of us struggling with it.