Time to write it all down

A few days ago I was reading a fellow ITPers blog and decide to make one of my own.  I tried to do this a bit on facebook but got away from it a bit.  I'm going to go back and journal in everything from the first day.  I was diagnosed with ITP on December 16,2010.  ITP is a rare blood disorder that affects your platelets.  During this year I have had many ups and downs, close battles with death, and a new sense of what life is really about.  I can't wait to go back and relive this last year one more time with all of you.  Until later, Julie

January 1-4 2012

On the 1st I woke up not feeling really good I figured it was just from being out side a lot the night before.  But on Monday I really didn't feel good I could hardly swallow so I decided to go in to Immediate Care to get seen since the doctors all had the day off for the holiday. They did a rapid strep test and it was negative, however the doctor looked in my throat and said it was real swollen and red so she put me on antibiotics.  At this time I am at  2.5 & 0 every other day and I was to take my last dose on the 3rd!!!  On the 4th I saw Dr.M and my count was at 57K so we are back on watch and wait.

December 2011

On the 1st I saw Dr. Egan and he said that I should start taking the Lorazapam again, I said I would think about it.  I told him that Steve & I made up but things were still unsteady.  On the 3rd I went with Caley to school to decorate Mrs.Oskrobas classroom door for her student council assignment.  We decided to make a tree out of the small trees with the kids pictures on them.  It was a lot of fun!  Sunday the 4th Caley and I got up a little late and headed out to St.John.  At 55th & Wolf I get pulled over and I was thinking what did I do?  I wasn't speeding I didn't do anything wrong.  The officer comes up and tells me that my right tail light is out oh and your drivers license is suspended!  I was like what?  Back in June Steve & I got stopped and I did not have insurance then so he got a SR22 thing and we bought insurance.  The officer said that it said financial reasons so I figured it must have had something to do with that.  He asked me if I had someone that could come pick us up and I said sure I would call my dad.  He said OK let me see what I can do for you.  SO I called my dad and told him and he said he would be there soon.  The officer came back and asked when he was going to be there and I said soon, I asked if he could just follow me up the road to church so I could drop Caley off and he said no I cant do that, I'm actually supposed to be arresting you and towing your car.  SO I said OK and thank you so much for not doing that.  He went back to his car and then another one pulled up behind him, he then came back and said we are going to go to the police station.  SO I followed him and his partner followed me.  We went to the police station and Dad came to get us.  The officer said Dad could take Caley to church but I could not leave yet.  I guess I'm arrested.  Dad, mom & Caley went to Dominicks and I was printed and had my mugshot taken.  Luckily for me this officer was so mice not to have done this in front of Caley, he also gave me an Ibond so I didn't have to pay bail.  He gave me my tickets and said my court date would be the 3rd of January.  I asked him if he thought Steve's would be suspended too and he said probably, I also asked if I could drive and he said no way!  SO dad came back and got me and we went home.  Caley & I had to go to her cousin Anthony's birthday party at the park which was good because I also volunteered to work the door at the winter wonderfest at the middle school at 2.  So mom dropped us off and we had a good time.  Its nice to see Bills family and for Caley to play with her other cousins.  The winter wonderfest was awesome and then we went home in enough time to see the bears lose.  On the 5th I went and had my blood taken at Burr Ridge it was 29K.  On December 7,2011, Pearl Harbor Day, I was supposed to have Rituxin but Dr. M had canceled it.  I had made Caley's 6 month dentist appointment for this day and I had to have mom drive us.  David was crabby that we couldn't pick him up and that made mom crabby and she was fighting with me.  Lately she had been fighting with me all the time because of the fact that I took Steve back.  I told her that I didn't care what anyone thought or what Steve did or didn't do because I knew that I did not want to be with out him.  The 8th was Davids 13th birthday!!  On the 10th he had his birthday party at the indoor water park hotel in Elmhurst.  I took Caley for a bit and then we went home.  I forgot to mention that mom & I went to the insurance guy and they told us to go to the DMV to find out what was up.  We took Steve with us as well to find out if his is suspended too.  They checked and said mine was for SR22 violation and Steve's was fine.  SO back to the insurance guy and they took care of the SR22 thing.  On the 12th I got a letter from the Secretary of State saying that I could drive again.  However I also got a letter saying that my court date was actually the 23rd of January.  Friday the 16th was my one year anniversary of ITP and that is when I started to put all of this together to put on paper.  On the 18th the bears played the seahawks and lost it was now evident that our season was over.  Also Dr. M said I didn't have to see her again until the 4th of January but to get a count checked on the 21st.  I decide to go on Monday instead of Wednesday and my count was 47K.  I got to go to down on the prednisone to 5 & 2.5 every other day.  Christmas came and went without any issues other then kids fighting again!!  LOL!!  The bears played the packers on Christmas night and we had hoped that we would be able to beat them by some miracle but we couldn't.  New years eve we had Carol & the Du and kids over and also Brian and Grace who have moved back to the neighborhood, since him and Jackie were splitting up.  We had a great time and I was so glad to be starting the new year with Steve!

November 2011

The week of Halloween week was the worst week of my life!  Steve & I fought like crazy and broke up on Friday after he had a problem at work, working for Colleen.  On the 2nd I went to the dentist and had the one tooth fixed, I also saw Dr.M that day my count was 49K but she decided that I should try Rituxin again.  On the 3rd I saw Dr. Egan and he upped my Buprion to 300mg daily.  I was having a real hard time dealing with fighting with Steve & being worried about having Rituxin again.  On Saturday the 5th, Steve came over to pick up all of his things from the house, it was really over.  I was so mad at him and he was being such a jerk to me and that was when I noticed a hickey on his neck!!  Really!!!  WTF!!!!  I told him I was going to tell his mom that I think he is drinking again and he said don't go anywhere near my moms car.  So I got in my car and drove away!  I was pissed and should not have been driving.  I drove around for a bit until I cooled off.  Becki was texting me asking if I was OK.  I was not!  She invited me to go with her to this thing at Bourbon Street next Friday so I said sure why not.  On the 8th I went in to have the Rituxin again, the nurses in the day hospital all remembered me from my brush with death back in February. My count that day was 20K.  They gave me Tylenol and benydryl and we got started nice and slow.  After the first hour it was time to increase the speed a bit.  After about ten minutes my throat got a bit tight and I felt like I could not swallow so mom got the nurse and the stopped the drip.  She gave me a shot of benydryl and waited for about 20 minutes then we started again and it was fine from then on.  On 11/11/11, Veteran's Day, we went to school for the program which is my favorite thing about Pleasantdale.  That night I went with Becki to the ladies night at Bourbon Street, it was a great time!  I drank way too much and ripped a t-shirt off a stripper!!!  On the 15th I went in for round 2 of Rituxin my count had gone way up to 108K, it went fine and we were home in time for Caley.  Caley & I baked Pumpkin bread that night.  My prednisone was lowered to 10mg daily.  I had my count checked at Burr Ridge on the 19th and it was 118K.  I have to mention that at this time I am not speaking to Steve or I should say he is not talking to me at all!  I was a mess, I cried all day and all night, I could not imagine not being with Steve ever again, but I felt like it had finally happened and we were over forever.  On the 18th I got a call from Colleen saying that J.J. called her and said that Steve was in the hospital in a diabetic coma!  She also mentioned that he said that Steve's girlfriend was asking him to get Steve's mom's phone number.  Great I'm in a terrible state of mind and now I have to worry about him too.  I call J.J. and get what he knows from him and then I call Loyola.  Steve picks up the phone and I was like are you OK and he said sorta and then he was like how do you know I am here.  I told him J.J. called and said his girlfriend wanted his moms number.  I was like you have a girlfriend and he said yeah.  I was heart broken and I hung up.  Glad that he wasn't in a coma, it turned out that he had pneumonia and not a diabetic problem.  I was crushed anyway and I thought it was never going to get any better. I have to mention that a few months back I decided that I wanted to make amends with Melissa, so I had made plans for her to come over tonite and talk.  It was real good and I think it was something I really needed to do.  It was a very powerful lesson in forgiveness, I never thought I could do.  Sunday the 20th proved me right, I wake up and go to the bathroom to then find blood in the toilet, and no it was not that time of the month yet.  I called Dr.M and go her answering service and left a message about what had happened.  I was told way back in the beginning to watch for this but it had never happened so I didn't know what to do.  They said go to the ER and have it checked out.  Great now I would be in the same building as Steve & I had to do everything I could not to go and see him, who was in ICU by the way.  The ER was so slow that day and we were ignored a lot because I was not really in an emergency situation.  They finally came and took my blood.  I decided to call Steve & tell him I was there in the ER, he was worried about me.  I love him so much and really wanted him to say that I should come and see him but he didn't.  Mom got mad at me for talking to him so she left and went to get food.  The Bears were playing the chargers at 3 that day so weren't missing the game.  They came back and my count was 118K so we got to leave and I was told to make an appointment with Dr. Reiger ASAP.  The bears won the game, however Cutler broke his thumb that day, we were on a win streak!  If we only knew that was the end of our season! Anyway on Monday the 22nd we went for Caley's PTC and met with Mr.Brade, Ms.Spetter, Mr.Woltman & Mr. Durkin.  I remember telling Mr. Durkin that I didn't think that Steve & I would ever be together again.  We talked about it with Caley to make sure that she knew it was not her fault, she knew that, just checking though!  I saw Dr Rieger on the 22nd to talk about my problem which I had happen again on Monday but not on Tuesday.  I was still very sad about Steve & I had a real hard time even talking to Dr.R about it.  He was really concerned about my emotional issues not so much the blood probelm.  I said I was seeing my therapist twice a week as long as the psychiatrist next week.  I saw Dr.M on the 23rd and my count was 84K and got to lower the prednisone to 10 & 5 every other day.  She also wanted to do two more rounds of Rituxin and I was like OK I guess.  We went to the circus that night and it rocked!!!  Thanksgiving came and went with no major issues, other then fighting kids!!  On Friday the 24th I sent Steve & email telling him about how much I love him and need him in my life and that I was ready to let him go as my boyfriend but not as a friend.  I told him that I needed him in my life becasue he had become my best friend and was there this whole horrible year.  He got out of the hospital on the 23rd.  I didnt do much shopping that day becasue I just wasn't feeling it.  On the 26th I invited Steve to come over and hang out, I thought I could handle just being his friend but all I wanted to do was grab him and hug him and kiss him until he said everything was going to be OK.  I have to mention also that I started going back to church with Erin to bible study on Wednesday nights and going to church on Sunday everyweek since my October trip to the hospital.  I had been praying like crazy telling God that I wanted him to make Steve come back to me.  That night when I had Steve over I had went up to go to the bathroom and I prayed to God saying I am going to try and kiss him unless you make me feel like I shouldn't.  I went back downstairs and I grabbed him and he said no do not kiss me.  So I guess that was my sign to not do it.  I was resigned to the fact that we were not meant to be together and I need to get used to being just his friend.  On the 27th we go over to Dennis & Erins for Molly's birthday, the bears are playing the reaiders with Caleb Hanie as the quarterback!!!  Oh boy are we in trouble!  But we won!!!  That night Steve called and said he wanted to hang out again and I was like OK.  On the phone he said I love you, I was like wow that came out of no where!  He gets here and I am outside and he says I have a surprise for you and he walks up and grabs me and kisses me!!!  I melted!!!  I was so happy!!  I know it doesnt fix any of our problems and still today they are not fixed but i dont really care!!  The 28th was the time of the month again and it was OK nothing bad at all.  I was set to have more Rituxin on the 30th but Dr.M emailed me and said that we were not going to do it.  It was a wild ride this month thats for sure!!

October 2011

October 1st I woke up not feeling real great since I over indulged the night before at April & Joe's wedding, I actually got into bed all dressed up!!  But I pressed on and got ready to go, I went and picked Caley up from Lori's after she did both or our hair, we were off to see Elise get married to Rudy.  I cried so much it was such a great ceremony.  Steve & I went to the reception and I was not feeling real great.  They had the coolest thing that I had ever seen, a candy table!!  So we snacked on chocolate covered pretzels while waiting for dinner.  We had a good time but left a bit early because I was not feeling good.  I saw Dr. M on the 5th and my count was 23K, again we were doing nothing but waiting and hoping that it doesn't fall any lower.  On the 8th I went to the dentist for a toothache I had all week.  I had asked Dr.M if it would be OK to have dental work done and she said cleaning was fine but nothing extreme.  He just looked at it and didn't do anything to it, just said to schedule an appointment to fill the one tooth and we will look at the other one. Which is a tooth I cracked over a year ago.  On the 10th  Steve started his new job at the landscaping company.  That night I had a melt down again and totally lost my mind again!  Colleen took me to Loyola and they sent me to Glen Oaks Hospital in Glen Ellyn.  It was a very scary experience and I never want to go back there again.  My count was checked at Loyola before I left and it was 35K.  At that hospital the doctors were not concerned about my medical condition at all, strictly focused on the mental.  I can't blame them that is what they do.  I met some nice people and some really crazy people while I was there.  I wanted to go home so bad it hurt! The NLCS and ALCS games were on that week so at night when no one was watching the TV I put baseball on.  The one girl thought that since there were no guys in the room at the time that no one was watching the game!!  Oh well, thanks Steve for the love of baseball I have today!!!  The doctor there wanted to start me on a medicine called Celexa and I asked if they had checked to see if it would lower my count, because I had already talked with Dr.M about this and she said to make sure of that before I start anything.  SO I told the nurse that I wasn't going to take it unless they could tell me it was safe, she said OK I will tell the doctor you refused it!  I was like wait a minute don't try and keep me here any longer by saying that I'm refusing, I just want to make sure it's safe.  SO that night I saw the doctor and he looked it up and it said there could be a bleeding risk if taking that medicine!!!  Really so you want me to take it when I am in a hospital that is not giving me any MEDICAL attention?  He agreed and started me on Buprion, wellbutrin.  I got to leave the hospital on Friday the 14th!!  I was so happy to be out of that place and never look back!  I will never forget it for the rest of my life, which I plan to live for a long time now!!  I saw Dr.Egan on the 20th and he increased the dose of the Buprion to 150mg daily.  I started seeing my therapist twice a week at this point. On the 21st we went to the Halloween Hop at Pleasantdale for the last time since next year she will be in middle school. I had a great time hanging out with the fortune tellers!!  And Caley, David, Nina & Eddie went to the cake walk and won lots of goodies!!  On the 26th I had the absolute worst period of my life.  I was terrified something bad was going to happen to me because I was bleeding so much.  I called Dr.M and she had me go in the next day to have a count done it was a big whapping 12K!  They called me and told me I had to start on 40mg daily of prednisone and if the bleeding got worse I was to go to the ER.  I saw Dr.M on the 28th and my count was up to 14K so she said that she was going to look into what the next option would be, because I was against spleenectemy.  On Halloween on the way to see Dr.M I was on the phone with Steve and he was very emotional.  Not quite sure what his deal was that day but I kind of thought he was being ridicule's.  I saw Dr.M and my count had come up to 35K so we are lowering the prednisone to 20mg a day and waiting to see what happens.  Mom & I picked up David & Lola and headed to Pleasantdale for what would be the last Halloween parade that we would be going to.  I was holding Lola in my jacket because it was cold out.  The BFD came over and told me that we could not have the dog at school.  I was like sure like we are going to leave now.  The parade was over and I took mom, Dave & Lola home.  I went back and chatted with Jolene until the kids came out.  We got home and Caley wanted to go down to NinasCaley this year, but it was better this way because I could not walk that much any way.  I came home and waited for Steve to get here, he had been working at McCormick place today.  I called him at 4:40 when he still wasn't here to see what was going on and he said the traffic was bad and he would be here as soon as he could.  At this time I was sitting at home by myself because mom even after having a fight with David took him over to his cousins house.  At 5:45 Dennis called and said that they were on there way over and I was like really you are?  I had no clue they were coming over, but I was so happy that they were.  I called Pat to see when they would be back or if I should come get Caley and she said they were on there way back.  I then called Steve to see where he was and he said he was at home!  I lost it!  I look back at it now and realize it was so stupid to get so mad about this, but the steroids messed with my head so bad that I couldn't be rational.  I told him to go f himself and not bother coming over.  That was the beginning of a very terrible week for me.  I also have to mention that the St. Louis Cardinals won the World Series.

September 2011

I realize on the 1st that I would have been married for ten years at this point and I was so glad that that didn't happen!!  I was able to stop one of my medications that I needed to take to help with the prednisone.  On the 7th I saw Dr.M and my count was 23K it was also curriculum night and time to meet Caley's new teacher Mr.Brade.  There are some new curriculum changes this year so this time it was way different then it had ever been any of the other years.  A few things i forgot to mention that happened over the summer.  First, Caley was adventuring out a lot on her own going for walks looking for someone to play with and she found Nina!  They quickly became best friends and spent lots of time together!  Also, Steve started working for Colleen as a greeter at the airport and he was helping coach David's football team.  That Friday the 9th was the welcome back event for school at the roller rank and I took Caley and Nina and David.  They had a great time and I spent time chatting with Jolene and Missy.  On September 11, 2011, the ten year anniversary of the tragedy in New York, Mom, Dad, Steve & I went to DA BEARS home opener against the Falcons.  It was really warm out that day and I was not prepared for it.  I wore pants and had on a black hat to block the sun.  I overheated pretty quickly, at half time I was just about done being there in the heat.  So Steve & I went to find first aid.  The person at fan services said to find the paramedics in the aisles.  We found them and they put me on this furniture dolly chair thing and I was real scared.  When I was diagnosed with ITP all they kept telling me was don't fall down.  SO you can imagine how nervous I am being 345 pounds now at my biggest, and these two guys are wheeling me fast down thru a crowd.  They kept telling me it was OK that they were fire fighters and they could handle it.  We got to a set of steps and I was like oh no I am getting up you are not going to take me down the stairs like this.  So we get to first aid and I tell them all my medications and about my ITP and she is like why are you wearing a black hat?  I don't know I didn't think about it.  They take my blood pressure and its high like it has been and then my blood sugar and its fine.  So she says well how do you feel?  I said not bad I just needed to cool off.  SO we hung out there for the whole third quarter, oh and the bears were kicking ass!!  Then we walked back, well part of the way anyway.  I decide I wanted to stay where we were because it was closer to the exit then where are seats are.  Steve went and got mom and dad, the game was over we won!!!  The next day was my first major mental break down.  I had a fight with Steve because I asked him not to talk to JJ but he did anyway and a whole bunch of other bs!  I lost my mind and banged my head pretty hard.  I went to the ER my count was 47K and they did a CT of my head and it was fine, I went home.  On the 13th I had my annual female exam and everything there turned out fine, thank God like I needed any more problems!  On the 22nd I saw Dr. Egan and he upped the medicine he gave me to 3 times a day, at this point I wasn't taking it all the time because it made me real sleepy.  On the 24th I went to the demo without Steve because he didn't want to go.  The orange crush lost and were not the champions, the black team was.  However the chicks demo, in honor of breast cancer, was awesome!!!  They did a great job!!  On the 30th I had my follow up with Dr. Klamut and he said that my stomach should get better soon.  That night my friend April from grade school got married, Steve & I were fighting on they way there so I decided to get real drunk.  Maybe not the best idea but i had a great time and there was no problems because of this.

August 2011

I saw Dr. M on the 5th and my count was 23K we decided that since I'm not having any bleeding problems right now that we are just not going to do anything to treat at all.  At this time summer is starting to wrap up and we are thinking about school.  We got this wonderful letter in the mail from the Superintendent sating that we needed to fill out this ridiculous thing called a student residency affidavit.  I will see if I can scan it and put it on here so you all can see how out of hand this thing is.  It also said that I needed to provide documentation that proves that we do indeed live here with my parents.  Not only that but my dad and I had to go in for a "sit down" with Dr. Friedisdorf, the superintendent.  I went with Colleen & Steve to gather the documents we had to take Colleen to the DMV so she could change her address since she moved to Brookfield this month and she would need documents to register David.  After that we went to the courthouse to pick up birth certificates and we were off.  I had to copy the information pertaining to Caley in my divorce decree and also we needed the tax bill and two things with my name and address on it.  SO at our "sit down" with BFD we will call him for short, first of all we got there about 5 minutes early and his secretary was not even there yet.  SO he lets us in himself and is all flustered and doesn't know where he should sit down with us.  Um I called and scheduled this about two weeks ago, you are the one requiring me to do this, why so unprepared? Anyway, we sit down in this office at a table that he had to clear off so we could use it and he had to bring in another chair for my dad.  I hand him the documents he briefly glances at them and says thank you for coming in I'm sure this is all fine.  He reaches his hand out to shake mine and I'm like really all that trouble and your not even going to look at it? My dad is not satisfied and has to give him a piece of his mind. He told him that he felt that he was profiling me and the other 8 families that had to fill this out.  Just for those of you that don't know we live in a good district where money is not a problem for the school and there are at least 400 families if not closer to 500 in the district.  SO you could say that my dad had to be on to something since they only choose 8 out of 400.  I mean there has to be more families then that in the district that have different living situations then whats normal.  Anyway we were getting ready to go after Dad gave the BFD a bit of his mind, and I was like um are you going to copy that stuff because you can't keep it.  And he was like oh yeah and by this time his secretary had shown up so he called her to come and take it and copy it.  And we left, I was mad at the process but didn't really care because I know that I was not doing anything wrong.  Later that day I went to the Burr Ridge Lab and had my blood taken it was 30K.  On the 17th I went to the school board meeting and told them how I felt about what they had done to me and the other 8 families was not right.  At that meeting they discussed the residency requirements and what things they should do in the future.  Our school board is so messed up that they could not come up with an idea that they could all agree on so the decision was to not do anything about it and keep it the same.  SO that means I will have to do this all again next year.  On the 18th Steve's grandma passed away she was 88 years old.  I don't get a long real well with his parents so I am not looking forward to spending a lot of time with them.  The 19th was the wake and we were there for 8 hours.  And you would never guess who showed up but none other then Brian Voyles, which I forgot to mention in July that he went missing for three days and we were about to start a search party for him and then his wife found him in a bar.  Steve was glad to see Brian and we heard some of his side of the story.  The 30th was the funeral and it was a real gloomy day.  When we left the church it started raining and didn't stop.  I have to mention that we were riding with Steve's parents and it was complete silence the whole ride.  At the cemetery it was pouring down rain and we were waiting for them to put her in the mausoleum, not even going to try and spell the correct!!  After getting poured on lightning was striking so we got in the car and waited.  We got to the restaurant and there was no power.  It was actually really sweet to have lunch by candlelight.  However there was no light in the bathroom when we got there since they didn't put a candle in there, so that was fun!!  Caley went with Dennis & Erin to the demo and the Orange Crush won the trophy!!  Peters first trophy since who knows when!  He was real happy!  The 25th was the first day of school for Caley