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

July 2011

On the 2nd of July I had yet another trip to the ER because my stomach was killing me.  I also had a real bad ear ache.  They did a ct of my abdomen again and everything was fine.  I think my count was 38K then and I was doing 5 & 0 every other day of the prednisone.  The doctor gave me a script for ear drops and we were on our way.  We stopped at Walgreens on the way home since it is a holiday weekend I figured we should just get it right away.  I asked the girl how much it would be and she said the ear drops were $130.00!!  I was like why are they not covered? She said it was coming up that I am not covered at all for anything.  Great now I have something else to deal with!   On Sunday Pleasantdale did there fireworks and we decide to watch them at the splashpad park for a different view.  I saw Melissa Lantro there who I haven't seen since Nicks wake in October of 09.  We chatted a bit but I needed to sit down so I said by and call me sometime and that was that.  I was feeling a bit better come Monday so we went with everyone up to Pell Lake. Steve, Caley, Colleen, David, Mom, Dad, Matt, Lola & I all went up to see the fireworks on the lake.Lola is Colleen & Davids Chihuahua puppy, she was born on May 6th!  She was so cute playing in the sand but she did not want to swim even though David made her!  She has become a major part of this family now! At this point I was taking the prednisone 2.5 & 0 every other day.  On Tuesday the 5th Mom, Steve & I went back to public aid to straiten out the problem with my health insurance. My caseworker said oh sorry I just put you back on today.  OK but I asked is everything going to be covered since I was in the ER on Saturday and she said yes.  On the 6th I saw Dr. M and my count was 34K, I had written in my book that I had a test at the hospital that morning but I don't know what it was.  That may have been the gall bladder test and I mixed it up with something else!  On the 8th I went to the Rhuemotologist and she said she was happy with the progress that I was making with the Physical Therapy and that she thinks I'm doing well and don't need to work with her.  On the 11th I took my last dose of prednisone, I thought forever but I was wrong!!  On the 14th I saw Dr. Klamut at the main building and that was when they officially declared my stomach to be inflamed from the steroids.  He gave me some samples of aciphex since my protonix was not covered and it was too expensive to keep buying but I couldn't afford to be on nothing.   At this time I am totally off steroids and the joint pain has begun, its not so bad since I am doing PT but I have also been taking advil again all the time.  I go back to see Dr. M on the 5th of August.

June 2011

On the first of June I had my first accident since having ITP.  It wasn't a big deal really. Steve was starting the grill and wanted me to sit by him so I put the chair on the bottom of the deck by him and went to sit down, but my chair slid back and over the edge of the deck.  I crashed and hit my head on the ground, I did not black out and I was not bleeding, but since this was the first time anything like this happened I figured I better call my doctor.  I talked to the on call doctor and she said that I should go in and have a CT on my head done to make sure there was no internal bleeding.  I did not want to spend the whole night in the ER so we went to the new Burr Ridge immediate care in hopes they could help us.  Since I just had my count checked yesterday they said OK we will do your CT here.  However they had to call there tech to come in so we waited about an hour and a half.  I was a bit nervous it was my first time going in head first, but the CT is open so its not so bad.  They ran the test and it was fine so we went home.  Since we had the big snowstorm in February we had two extra days of school and the last day was moved to the 6th.  I had made Caley's 6 month dentist appointment for that day thinking that there would be no school.  I picked Caley up early and headed out to Homer for her dentist appointment.  Caley's teeth are all good!  That afternoon I saw Dr.M and my count was 37K so again I got to lower the prednisone to 10 & 2.5 every other day.  The weather wasn't all that great so even though the pool was open we hadn't been swimming yet.  On the 8th, Caley's 9th Birthday, I went and had this gallbladder scan done because I was having a lot of stomach pain.  It was a long test where you have to lay still they inject you with radioactive dye and then they put this scanner on you and you have to wait until your gall bladder lights up on the screen.  Then they have you drink this stuff that's like cream and then they watch what happens.  I guess it was OK.  On the 10th I saw Dr.Klamut the GI Dr for the first time in the Burr Ridge office, he ordered and EGD for me, which is the down the throat test to look in the stomach.  I called to schedule that appointment and the soonest they could get me in was the 16th.  On the 11th I had Caley's party at woods pool, the weather was still really cool so I moved the time of the party to daytime in hopes it would work out better. It went OK, the kids all swam and had a great time.  However it was a lesson learned and in her 9 years of life we had one too many outside birthday parties that the weather didn't cooperate.  Those of you that know me well enough can remember Caley's first birthday and how awful the weather was that day!!!  Anyway it worked out OK but this year we will do something different, Caley is already planning it!  On Monday the 13th I went to the ER with horrible stomach pains.  They started by doing an ultra sound of my appendix and it was fine.  So then I had to drink that barium stuff and have a CT of my entire abdomen done, and that was all fine.  They had given me something for pain and decided to admit me.  My count was 31K and I was doing 10 & 0 prednisone every other day.  I stayed in the hospital for three days on the 14th they decided to do my EGD.  I was really nervous about it as well.  I got brought down to the room where they do it and they are giving me all the instructions.  Lay on your side and try to relax.  My IV was in my left arm kinda in the crook of my elbow so I couldn't bend that arm.  They decided to leave the arm rail down so I could keep my arm strait.  The Dr sprayed some bad tasting stuff in my mouth and said that this is to numb my throat.  Then they attached some stuff to my IV and that is all I remember.  They woke me up and said OK we are going to take you to your room now. I have to mention that I didn't have anything to eat on Monday before going to the ER and then they would not let me eat.  Once I got upstairs I asked for food even though I was told I couldn't eat and I got a turkey sandwich.  In the morning all I was able to have after my test was liquids.  That night I had Steve bring me a sandwich because I was starving!!  My stomach was still hurting a lot and they were giving me pain medicine for it.  On Wednesday i got to go home, which was good because I had my first Physical Therapy appointment that afternoon at Burr Ridge.  I met Viki my PT and she was awesome, we decided to do 6 weeks 2x a week.  Also I forgot to mention before the EGD my count was 27K so they gave me platelets before hand.  Which was the first and only time for me so far.  My count was still at 27K when i left that day.  I saw Dr.M on Monday the 20th and my count was 48K we lowered the prednisoneEGD came back that my stomach was swollen from all the months of steroids, I was put on this medication that helped it feel better.  I was scheduled for PT on the 21st but I felt too lousy to go.  On the 22nd mom & I went down to the public aid office because I had gotten a notice saying that my coverage was being canceled, I saw my case worker and she said it was going to be fine.  I had PT on the 24th and it felt real good, still hard to move around but its getting a bit better.  On the 27th I saw Dr. Reiger and had my blood drawn there in the Burr Ridge office, finally!!  The count that day was 32K. On the 28th it was an eventful day!  Steve took Caley downtown for her birthday gift a day at the taste a long with her first Cubs game!  It also happens to be the day that Caley's cousin Delaney was born not to mention her other cousin Samantha's 20th Birthday and my parents 36th anniversary.  I had PT and went to the pool for a bit.  The summer was off to a cool start but had finally started to warm up a bit!

May 2011

May started with the school year coming to end very soon we were ready to think about summer.  Since I was sick in February I was unable to get us a sponsor for our coed softball team so this would be the first summer not playing Willowbrook softball but that was OK because it is also the first year that Caley will be playing in BRW Softball league!  Caley was on the Heat that was coached by Brian Bailey, the team was made up with mostly Pleasantdale girls ranging in grades 2-4 since it is the 8 and under league and Caley did not turn 9 until June.  There were two girls from Gower on the team as well.  It was so much fun to watch them learn about softball and relieve a bit of my youth with them, even though I was just watching.  I was still having a hard time moving around but I had been feeling OK, still not sure where I was at with prednisone but on the 11th my count was at 38K.  That night we went to Midway Airport for the Honor Flight that was sponsored by LT.  I had to have mom push me in the wheel chair again because I still could not walk much and didn't know how far of a walk it would be and if there would be somewhere to sit. It was so amazing to see all the people there, mostly all the kids from the local junior highs.  Unfortunately our school did not participate in this fundraiser.  The high school band and the choirs were there to cheer on the veterans as they came home from there day in DC.  As they came down I made myself stand with everyone else to cheer on these heros.  It was a great experience, thank you Gina for sharing it with us!!  On the 16th I saw Dr.M and my count was 44K and my prednisone was lowered to 10 & 7.5mg every other day, so I guess I had been on 20mg a day before this.  The 17th was Caleys first softball game and it was HOT!!!  Who would have thought it would have been 90 in the middle of May.  On the 18th Caleys brownie troop had there flying up ceremony, it was a little sad since the leaders that had been with them since kindergarten were handing the troop over to three other moms.  The old leaders made a dvd for the girls of pictures from the last four years of scouts.  It was so cute and it was set to girls just wanna have fun so Caley played it over and over again.  On the 21st it was the first demo of the year and Caley had a game that morning at 9am not to mention it was picture day so we had to be there at 8!!  We had a great game and the demo was fun as well, however Uncle Johnnys team lost in the first round and that was not fun.  On the 23rd I saw Dr.M again and my count was still at 44K so I went down on the prednisone to 10 & 5mg every other day.  On the 25th we went on the 3rd grade field trip with Pleasantdale and it was a gloomy rainy morning.  We got a late start leaving because there were not enough buses.  Traffic was terrible and it was taking us forever to get there.  The teacher got a phone call and then stood up to tell us that we would not be going to the Sears(Willis) Tower instead we were going strait to the Wendella Boat ride.  The boat ride was a lot of fun and actually very educational.  I learned things about the city that I never knew before.  I never knew that the white flag with the blue strips and the red stars was the Chicago flag.  It was a great time and I was glad that we went even though the weather was not all that great.  Softball was going well and the weather was weird because the hot weather left and we had cool temperatures.  On the 31st I had my count checked and it was 59K!

April 2011

On the first weekend of April Caley had another sleepover at Bills, I think this was the last one actually.  I was still not feeling real great but there was always a lot to do. On the 6th I had a very busy day I started my day going to Pleasantdale for Caleys IEP meeting.  For those of you that don't know what that is, IEP stands for Individual Education Plan.  Caley has this because she was originally classified as Developmental Delay however at the end of second grade we had to change the classification to Learning Disabled because she was too old to be considered a delay anymore.  The meeting discusses what things are in place to help Caley be a successful learner.  We discuss how this year has been, if she achieved her goals or not, and we set new goals for next year.  Its a long meeting and there is so much information and its hard to keep up with.  I was really tired after all this but I had to head over to Loyola for my appointment with Dr.M. I didn't write anything down about that appointment so I don't know what the count was or what the dose of Prednisone was.  However when I got home from there I had to pick up Caley and head back to school for Experience Elementary night, which is the bast by the way!!  We went and saw Caleys teacher Ms. Macek and saw all the great things the kids have been working on this year.  We walked around the school yes walked I was surprised that I could do this.  It was a real nice night.  At this time Steve & I had another fight because he didn't answer the phone or call me for three days so I figured he must have been drinking again.  He called me on Saturday the 9th saying he was in the hospital, which I figured confirmed the fact that he had been drinking.  He swore that he was not and that it was his diabetes that was the problem, his blood sugar was at a critically high level of 960!  I have to mention that Steve was diagnosed with type 2 diabetes back in the winter of 2010, it was due to his alcohol problem.  He was put on Metformin and was to watch his diet.  When we were in the dells for spring break he didn't bring his medication with him and then he stayed at our house for about a week before going and getting his medication, he says that this was the cause for the rise in blood sugar.  April 11th was our 7th year anniversary and we were not together because he was in the hospital and we were not talking.  I had my blood drawn on the 13th and my count was 69K, and David cheered!!!  Not sure what the dose of prednisone was at this time but breathing was still real hard.  I was scheduled to go to Loyola on the 14th to have a pulmonary function test and a lung scan.  The pft was a little scary you sit in this little box and breath into this machine.  The lung scan was weird too, they inject you with some radio active stuff and then raise you up high and then this xray type thing circles around you.  However they asked me for my LMP and I said it had been a while, so I had to go up stairs to the lab to take a test.  It was really screwed up up there and it took forever!  But it was negative and we had the scan done.  So Caley actually went to Bills for another sleepover on the 15th but was brought back in time to go to her friends birthday party.  After the party we went to the middle school to see Willy Wonka, it was great!!  That day my count was 65K.  On the 19th I met with the Endo Dr to see how things were going.  Not too bad but not any better really.  I also saw Dr. Rieger that day too not sure what for.  On the 20th I had my blood drawn at the new Burr Ridge Loyola Building and my count was 65K still.  My 32nd birthday came and went with nothing real interesting happening.  On the 26th I saw Dr. Fahey the pulomonologist and he said that my lungs are pristine!!  The month wraps up with nothing to write home about!

Spring Break

Caley is on spring break from the 28th to the 1st so we decided to go to the dells for a few days.  Mom, Steve, Caley & I headed up north on Wednesday and we stayed at the Mt.Olympus hotel and went to there indoor water park.  At this time I had the moon face so bad, I mean there are pictures to prove it that I never want anyone to see!  We had a great time there but I couldn't do much I spent most of the time just sitting with mom while Steve went with Caley on water slides.  I had to have Steve push me in the wheelchair in and out of the water park because its such long walk.  We stayed just the two days and we headed back home.

March 2011

I had a blood draw today and my count was 352,000, highest ever, so Doctor decided lets try and lower the Prednisone again, I was at 80mg daily now we are going to go down by 10mg weekly.  Sounds good to me!!  Caley goes for her first sleepover at Bills tonite and I in the meantime am still not talking to Steve!!  I spent the night hanging with Carol and the DU!! 

March 8,2011

I go in for Round 2 of Rituxin again in a different room with a new set of nurses!!  This time they gave me the adavan again and out I went!!  However this time I didn't have the little finger thing.  I woke up around 1 and when the IV monitor beeped she said OK only one hour to go!!  I was like really AWESOME!!!! We were done and on our way home by 3!!!  I had a little bit of a headache but that was it!!!  So it was successful again!!!  That night Dr.Michaelis called and left me a message saying that maybe I didn't need to come in for our appointment tomorrow. She said she would call me back and let me know.  In the meantime I decided to send her an email, in which I had a few questions about other things.  One being the difficulty I was having breathing.  Also I was concerned that I still haven't gotten my period, at one point they told me not to worry because it would probably be messed up because of the prednisone!!  I had been on the depo shot and got my first period on November 26th and then I didn't get one in December at all and then I got it again on January16th and haven't had one since!!  So the doctor sends me an email back to just come in for my appointment. 

March 9,2011

We go in for the appointment and Dr.M asks me why I haven't taken a pregnancy test yet?  I'm not sure really!  I guess because you all told me that my period would be messed up so I didn't think it was a big deal.  It was a huge deal to her because she was giving me Chemo and that could be very dangerous to a fetus!  I'm not sure what my count was on this day but I was dropping my Prednisone down to 60mg daily for this week.  I left and was told to go the drug store and get a test and call with the results.  So we went and got one and then it was moms turn to go see her doctor, so in the bathroom at her Dr's office I took the test it was negative and we moved on.  I called Steve and told him we had made up by now.  Things were going pretty good now. 

The birthday weekend began with moms birthday on Saturday and Joannes big surprise party on Sunday, it was a great weekend and all was good!!!

March 14,2011

I made an appointment with Dr.Reiger to discuss my breathing issues with him like Dr.M suggested.  He decided to do a few things, a chest xray and an EKG along with taking some blood to run the HCG(pregnancy) test.  He gave me an inhaler and this cool chamber thing that helps you get all of the medication when you hit the inhaler!!  I was on my way for round 3 of Rituxin tomorrow!!

March 15,2011

Round 3 went great Dad dropped me off and they started me right away, I was asleep when mom got there!!  Again I woke up around 1 and I was just about finished!!  So It was a success!!! 

The next day I was tired and decided to go back to sleep after I put Caley on the bus.  My phone rang waking me up and it was Dr. Reiger calling he said that there was something in the radiologists report that I should have looked at again.  Something about nodules up high by my heart.  So he wanted me to have a CT Scan done, the cool thing is that this new Burr Ridge center is now open and I could have it done there!!  SO I called for the appointment and got in on Friday!!

March 17,2011

ITS ST.PATTYS DAY AND ITS EVERY ONES BIRTHDAY!!!!  The party was a great success I had a great time and enjoyed spending time with everyone!  However by the end of the night I hadn't really drank anything but my head was killing me so bad I thought I was going to be sick!!  I slept so much and really didn't even want to get Caley up for school but somehow I did and managed to get her there too!!!  I went back to sleep even though I had the CT this afternoon I figured that I would get up sometime before my test!!!  Steve took me for the test I was kinda nervous about!  They started my IV while I was sitting in a chair so I guess I'm really getting good at this whole needle thing!!! I went in and out before I even knew it!  The test was OK.  Steve and I went and had lunch came home and hung out with Colleen.  Sitting there it was about 5 and the phone rings its the Dr's office, OK breath Julie breath!!  I answer and she says the test came back fine!!!!  Awesome!!! So Caley is now going for her second sleepover at her dads house and its my dads birthday.  So Bill picks up Caley and the rest of us go to Bonnies in Willow Springs for a fish fry, it was OK!  The rest of the weekend went by without anything interesting!!! 

March 21,2011

I have an appointment with Dr. Michaelis this afternoon and I have to have blood drawn first. They told me to get there an hour early but we didn't get there until 15 minutes early.  I had the blood draw and checked in at about 2:40, 5 minutes early.  Now it was time to wait and waiting with Steve was not fun!!  For whatever reason we got into a huge fight about the stupidest things!!!!  Anyway I go in to see the doctor and she says things are fine I ask what the count is she said well it did go down its at 149,000 but that's still good.  I'm dropping the prednisone still I'm at 40mg daily now and she said go ahead and go down to 30mg tomorrow. 

So now we are all caught up!!!  Today I'm at 30mg Prednisone daily for this week, next Tuesday the 29th I go to have my count checked and as long as its above 100,000 I can go down to 20mg daily for the next two weeks! We decide that I'm done with the Rituxin as well!!!  So for now things are good!!  My legs are starting to feel better and I have stopped gaining weight!!!  SO here's to things getting better!!! My count on the 29th was 82K, not sure exactly what we did after that.

We arrive at about 8:00 and brought into the little room where we were last time, however this time there's a whole new set of nurses.  I'm really nervous this time and I was asking if the doctor was going to come up and talk to me before we started like last time.  They called her and we were waiting forever and finally Karen came up.  She said to me if you don't want to do it we don't have to do it.  I told her I was just real scared but I wanted to do it.  Finally we got started at about 11:45 they gave me Benedryl this time thru the IV they also decided to give me Adavan, not sure on spelling, so that I would relax.  AND did I ever I was falling asleep before they even finished the injection.  They had explained that they would take my vitals every half hour and I had the pulse ox thing on my finger the whole time.  They decided to run the drip really slow as well!  SO I was off in never never land and the Rituxin was getting in!!!  Mom said at one point my pulse ox got down to 79 but otherwise she said I  seemed to OK.  I woke up somewhere around 3 and was still real groggy!  But I was happy that my body seemed to be letting me take the Rituxin.  I got my laptop out and let all of you know that I was fine and that my body was letting me take the medicine.  We didn't get out of there until 7:00 that night and we were told to come back at 7am to get the rest of the first dose.  So we were off on our way home after a successful round of Rituxin.  I was worried that I was going to have side effects but I didn't.  I went home and went back to sleep no problems at all!!  The next morning we went back again a whole new set of nurses but we got started right away no Adavan this time so I didn't go to sleep right away.  I slept for a bit but then I was up watching soaps!!  They finished up and we were out of there by 4!!  SO we completed Round 1 of Rituxin successfully now it was time to wait and see if the count would go up!!!!!

February 21,2011

We have an appointment with Dr.Reiger because the hospital wanted a follow up with the PCP after the hospital stay.  SO we had a chance to chat with him again about the ITP and everything that was going on.  We discussed the possibility of the spleenectemy and maybe having a gastric bypass done at the same time. He thought it would be a great idea but it would be something to talk about with the surgeon as he wasn't sure if they do a two for one!!!  He also did some blood work to check my thyroid, which turned out fine. 

February 22,2011

We have our first appointment with Dr.S(extremely long name that I cant pronounce) at the Hickory Hills office.  She was the nicest Dr I have ever met!!  She came in and had already knew everything about me and had talked with Dr.Michaelis and everything.  She said she was going to monitor me and help me get off the Prednisone.  She ordered some blood work and we were off.  The blood test results for her came back and i have a Vitamin D deficiency so she put me on this super vitamin that I take on Sundays for the next ten weeks and then I will see her again!!!  In the meantime I am to take 1000iu of Vitamin D daily and 1200iu of Calcium daily, I try to remember but the second dose in the pm I allwayz forget!!!

So for now things seem to be OK, my count was at a good level I'm getting the Prednisone down I think I was at like 80mg daily here!!  My body was still not real good but I was being positive that we were on our way up!!!  That weekend Steve and I had a little tiff and I was real angry with him and decided I didn't want to talk to him anymore.  Sunday night I wasn't feeling real good, actually for the first time since having ITP I was COLD!!!!  I had on two blankets and I was still freezing!!  I had mom take my temp and it was fine i tried to sleep as much as I could and drifted off. 

February 28,2011

I was set to go in for a blood draw today but since I woke up and felt like a crap I thought I would call and see if I could get an appointment, which is a joke since its a Monday!!!  Mom took my temp and I was 100.1, not bad but a temp no doubt.  They said to just come down and see the nurse to have my pulse-ox checked after my blood is checked.  OK so we go have the blood drawn and I go down and tell them whats up.  Karen one of the other doctors which is funny that I only know her first name, has me sit in this chair and the nurse takes my vitals.  Karen tells me if your pulse-ox is low we are going have to admit you.   While we are waiting to get a reading on that down the hall comes Dr.Michaelis with not a good look on her face.  So I ask did you get my count yet?  She said yeah 32,000 I said fuck!!!  Then I said pardon my language but geez what happened?  Shes just perplexed and says I think we HAVE to do Rituxin again!!  Karen tells her my pulse-ox is at 93 she says fuck!!!  We all had a  little laugh and she has Karen walk me around that hall to see if it gets any better or any worse by walking.  So we go down and around the hall and we end up back by Dr.Michaelis office and she tells me you know we need to take care of this ITP before something else kills you!!!!  They decide my oxygen level was going to be OK but I needed to come back tomorrow and have the Rituxin!!  OK I guess because now you've thrown the you could die at me so fine if you think its safe ill try it!!!

So now I have had ITP for just about two months, I'm familiar with the illness and getting used to getting blood drawn all the time.  Now that we tried Rituxin and had the reaction to it we are back on the spleenectemy route!!!  Oh boy!!  I spent a lot of time on the pdsa website and researched other drugs.  My doctor didn't seem like she wanted to try any other drugs, not quite sure why either!  However one thing was clear we were NOT going to try Rituxin again!!  Steve was dead set against it, there was no way at all we were going to go thru that again!! 

February 16,2011

I see Dr.Michaelis and my count was 259,000 so apparently some of the Rituxin got in and helped my count go up.  In the mean time lets keep dropping the Prednisone and see what happens.  Maybe if the count doesn't crash we can hold off on doing anything!!!  Great news this is what I was hoping for.  We also discussed that she did some research of her own and found that there is a safe way for her to give me the Rituxin again if need be.  I told her I really wasn't sure that I felt comfortable with that, but if need be I would think about it.  We were on our way with a few days off from seeing doctors and getting blood drawn!  However she did refer me to an endocrinologist to help with getting off the steroids. 

I did some research on Rituxin and decided even though there were risks they were small and I felt that since I would be in the hospital at the cancer center i would be OK.  I had read stories on the pdsa website and most people said they just slept thru there treatments.  So I decided Thursday night that I was going to stay up as late as I could so that I would be tired the next day.  I had no problem doing this since I had the whole weeks worth of OLTL to catch up on anyway!!  And after watching four hours of soaps it was about 4am and I still couldn't sleep!!  I tossed and turned and before I even felt like I slept at all my alarm went off!!  We got up and were on our way for the first treatment of Rituxin.  We got there at about 8:30 and waited for them to call the doctor up to explain what was going to happen.  Finally at about 10:30 did we get started, I posted on facebook that I was nervous but ready to get going.  They gave me two capsules of Benedryl and two Tylenol and then started an IV.  The first hour went by and it was fine, I even posted on facebook that it was fine.  They came in and turned up the pace on the IV drip.  I decided that since I stayed up most of last night that I was tired and I was going to try and sleep.  I laid the bed back some, took my glasses off and got comfortable.  Within 10 minutes I started to cough, so I put the bed up some thinking maybe I just needed to be more upright.  But then I looked mom and told her I feel like I have a wheez all of a sudden.  The nurse who was just outside our curtain heard me talking and came in.  And I told her yeah I feel like I cant catch my breath, and that was it from there I just kept saying I cant draw in a big breath.  She stopped the IV drip and began injecting my IV with all kinds of things.  In the meantime I'm like trying real hard to stay clam and to get a breath in.  They brought me oxygen tubes but I'm not a nose breather I told her I cant breath out of my nose at all so this is not helping me!!!  She had the epi pen in her hand and looked at me and said to the other nurse where do I get her at she is dressed and the nurse said go right thru her pants it will go thru and then comes and jabs me in the leg with it!  Now that was scary!!  Finally someone gets a mask and I have oxygen that I can actually breath in!!  And then the paramedics come and they load me up and as we are leaving the day hospital I'm worried that my mom is going to get lost from me so I'm yelling to her to stay caught up with us, cause I don't know where we are going!!!  Then I realize we are going outside to an ambulance? Why aren't we already at the hospital?  Well we were at the Cancer center and since I went into Respiratory Arrest I had to go the ER in the hospital building at the end of the lot!!!  Once in the ER I was breathing pretty good.  However we were told that I would most likely be admitted for observation.  OK now time for damage control because you know while I couldn't breath Mom was freaking out and calling everyone and freaking them out too!!  Steve was working at the auto show and even was going to leave work right away.  I called him first and told him I was OK and that I would probably be sleeping over at the hospital but that there was no reason for him to rush over.  While in the ER we saw a doctor who told me that 80% of the people who have this reaction die a sudden death!!  OH MY GOD!!!!!!!!! OK now I'm scared!  Even more scared then I was when I couldn't breath!!  OK so I get brought upstairs to my room which oh by the way was just across the hall and over one from Ellen, who had been admitted on Thursday.  Unfortunately Loyola is not the resort that LaGrange is so i did have a roommate.  She was OK and did not really bother me.  At some point I think a Dr came and talked to me and said that they were just keeping me to make sure I was going to be OK.  I had a heart monitor on and they checked my pulseox when they checked my vitals.  Steve came with Dad and brought me McDonalds because I think dinner was like something that looked like dog food!!!  They all left at around 8:30 and I decided to try and sleep!  It worked for a bit I woke up feeling like awesome I got some sleep in nah it was only 12:30.  I got up went to the bathroom and tried again.  About an hour later my roommates IV monitor started to beep, I think she was a hard sleeper because she never got up to call the nurse.  I know now that I should have called for her but I kept waiting and waiting for them to come in!  It seriously seemed like an hour and a half before they came in.  And when they did I heard the nurse say oh my your iv is out.  Now its like 3am and we got to have the lights turned up because they are restarting her IV!!!  Oh geezmeds and said I was going to go home as soon as my papers came up.  So she took the IV out.  About noon we were on our way out of there!!!

Our first time at the Cardinal Bernadine Cancer Center was a little intimidating at first.  We had the guy park the car and we went downstairs to Clinic E, thanks to Ellen for the directions we knew exactly where to go!!  I checked in and then the waiting began!!  I think it was probably only a half hour before we were called in, it just seemed like forever!!!  The nurse checks my vitals and asks all the questions and says OK doctor will be here in a bit.  Doctor comes in nice to meet you and all that jazz lets get down to business.  OK you have ITP it means this and this and this she explains away also drawing a diagram on a piece of blank paper.  This was so great I mean I had already done so much of my own research that I knew how ITP works but it was great to see a Dr draw it out for me!!  So then she started writing down how we treat it.  She wrote a few things before she got to spleenectemy.  She said she didn't know why the other Dr was ready for that already.  She said at this point she wanted to try and lower me off the steroids because you could tell how it was effecting me.  I think my weight was about 320 then.  She told me to lower the Prednisone down to 80mg daily and to have blood work done at the Darien office in one week and to see her on Monday the 31st. 

From this point on I don't have exact counts anymore as I will strictly be working from memory, everything prior to this I have the records of!!  So I am not sure what my first official count was at the new Hematologist office.  But we were on our way to try and get off the Prednisone and to prevent from having surgery. So we started the great Prednisone taper she decided that I could go down 20mg every third day.  I have to mention at this point when I saw her on the 31st my arms,legs and back were so achy and I couldn't stand for more then five minutes or walk further then 10 feet.  They decided that I needed a blood test to make sure I didn't have myotitis, not sure on the spelling of that either, but that I most likely have myopathy from the steroid's. Myopathy is a weakness in the muscles, now I'm already a heavy women so I dont have real strong muscles to begin with and at this point I gained 20 more pounds so you can imagine how my muscles must be feeling!!! The test came back OK and they decided that its just myopathy and she hoped that it would clear up after we get off the Prednisone.  So we are on the taper and the platelet numbers begin to decrease.  So the doctor wants to try and give me Rituxin before I get sick again.  OK now for any of you that don't know, Rituxin is a Chemotherapy Drug that is made of mouse particles.  It has been found that most people have respiratory problems when receiving this treatment. There is a small chance that you could have a bad reaction from this medicine and you could die. Wow why would I want to take Chemo drugs? I don't have cancer I'm not going to die and I don't think I really want to try this stuff out!!  Well the doctor says if your count keeps going down we have to do something!  She gave me a referral to a surgeon  and said get a consult appointment with him.  And think about the Rituxin and we will see what your count is today.  This being Monday February 2.  Well the count was not OK I'm not sure what it was but she decided that we needed to go forward with the Rituxin on Friday. 

Our first meeting with Dr.Brent Reiger was more then expected!!  He came in and I told him I was diagnosed with ITP and he seemed to know what I was talking about and everything.  We spent a lot of time talking about my current medical problem and the side effects.  At this point I think I was up to 320 with my face starting swell ALOT!!!! Also my blood pressure was real high as well as my pulse rate.  He said that these things were concerning but there was no way to say for sure they weren't from the Prednisone.  He was happy that we were there and happy to answer any questions I had at any time and glad that I had the appointment for Friday with the Hematologist.  Also last count that was taken by the Access doctor was 140,000 still on 100mg daily of Prednisone since I hadn't seen the Hematologist. In between this visit and the visit with the new dr I did have my final blood draw at LaGrange Hospital and my count was 350,000 the highest its ever been!!

First thing in the morning I head to Dr. Hartings office for a blood draw, my count was 75,000 I was allowed to drop to 100mg daily of the Prednisone. Mom and I head out to summit to the access office for a 2:00 appointment, we get there and the waiting room is packed!!  Mom is like are you sure you want to be here?  Yeah lets check it out its not so bad!!!  LOL!!!!  At about 3:00 we get called in to the back.  The girl takes my vitals and we are waiting again!  We get a knock on the door and this is funny because its not the doctor its the guy from quality control or something like that he has a survey for us to fill out!!!! One of the questions is about how long you have waited, too funny!!!  Anyway we met the Dr who is not actually a Dr shes a nurse practitioner which OK with me too, I explained to her what I knew so far about my condition and gave her copies of my two latest blood tests.  I explained to her my situation with having no insurance and wanting to have a doctor to manage my health care.  She said great and that she could be that person for me.  At this point she took a look at my blood test results that I gave her and she told me she was concerned that my WBC count was too high.  She asked me to come back in a few days and have blood work done for her. She had said that if the WBC count got any higher she would want to admit me so she could have better observation.  We talked about the spleenectemy and she said that she too knew that was next in line to treat ITP, but I should talk to the Hematologist more about that.  She said that they worked with other hospitals in the area that would take uninsured patients on a sliding scale so if need be we could have surgery at one of those hospitals.  So we left at about 4:30 and we were on our way loaded with a whole new worry.

That night we decided to have a family meeting, consisting of myself, Steve, Mom, Dad, and Colleen.  Mom and I spent most of the time explaining to the rest of them what it is that is wrong with me, which really we were still not all that sure!!!  And then the decision of what should we do next and where should the priority lay, in the money or the treatment?  So we discussed the spleenectemy and how we would take care of Caley if I had to have surgery.  We also discussed again maybe going down to Stroger and getting treated there.  And of coarse the possibility of just going with the current doctors and figuring out how to pay for it later.  In the end we decided that the first thing to do would be to go to the DHS and apply for Medicaid.  So the next  morning mom and I went down to Melrose Park.  Now at this point I have been on high doses of Prednisone, which for those of you that don't know is a steroid.    The side effects had started my legs were feeling real heavy and I could not stand for long periods of time.  I waited in line at the DHS office for about 15 minutes feeling like I was going to die if I didn't get to sit down soon!!  Finally it was my turn and I told the women at the desk that I wanted to reapply for Medicaid she took my info and told me to have a seat.  It was pretty crowded there too so I thought oh boy we are in for a long haul!!!  I sat down and called Steve to chit chat and to let him know we just got there and sure enough my name was called!!  I went in saw my caseworker told her the jist of what was happening and she said no problem I will put you back on,  I also asked her about my hospitalization in December and she said that it could be back dated no problem!!!  Sweet!!  This is the best thing I have heard all year!!!!  I walked out and mom was like we are done already really????  And I was like yeah I cant believe it myself but we are done and I'm taking care of!!! 

I want to back up a bit and say when I was looking for other doctors for a second opinion I had many options.  Loris mom who those of you that know her know that she has a bleeding disorder herself, refereed me to her doctor at Loyola.  Also Lauren Wollenberg refereed me to her doctor at the University of Chicago.  I did a little research on my own of the Loyola doctors and I had found one that I liked and it said she specialized in ITP.  I was thankful for the recommendations of my friends but decided that I wanted to try and go with this doctor.  However when I called Loyola I decided that I just wanted them to get me in with the first Hematologist that I could see, because at this point I wasn't seeing any doctor at all.  I was told the last time I was at Dr. Hartings office that she couldn't continue to draw my blood anymore.  Obviously because they were absorbing all the cost for doing it for me and they did not want to continue doing it for free.  So i was told by the scheduler that she could get me in on Friday but I would have to go to Gotlieb Hospital, not sure how that's spelled, in Melrose Park.  I explained to her that would be OK if its just for the initial visit because this is a condition in which so far anyway I had been going three times a week.  She said let me email the doctors and I'll see if I can get you in sooner, Ill call you back.  OK in the meantime the next day I was to go to the Access office and have blood drawn there to see what my count was, and hope that she wasn't going to send me to the hospital.  I decided to follow up with her even though we had gotten the medical card and I decided I was going to go to Loyola, mostly just because I already had the appointment and I wanted to get a count.  I got a call back from Loyola telling me that Dr.Michaelis had an opening for me on the 21st.  Who would have thought the Dr that I researched and picked out had an opening for me!!!!!  While I had the scheduler on the phone I asked for a PCP so she found me one that works out of the Darien location and gave me an appointment with him on Wednesday morning. 

The last two days I started to get sick.  I was having a hard time breathing and in general I just felt lousy!!  Well it turned out that was because I had the flu!!  My platelets had dropped to its all time lowest which was 6,000.  Dr. Harting sent me to the ER where they did the flu test and confirmed that I did have the influenza virus.  Also while there I had a chest xray and an EKG.  I asked if I was going to be admitted and they were not sure yet.  I told them I will rest a lot better at home then I will in the hospital so after talking it over with the Hematologist they sent me home.  However I am instructed to go back to the full dose of the 140mg of Prednisone!!! 

So now I have been taking Prednisone for about two and a half weeks and the side effects have begun, I gained 15 pounds at this point since 12-16-10 and boy did my moods swing!!!  The moon face didn't show up too bad YET!!!  But it was coming!!  After this episode with the flu Dr.Harting told me that I would have to have my spleen removed.  She said that it was the next thing that they did to treat the ITP and since my count was way down this is something we need to decide to do soon.  Once again I do not have insurance and have no clue how we are going to pay for this.  Not only that but surgery wait a minute I'm not sure I'm liking this!!  So I decided that we should get a second opinion or try to find a place where we can get on a sliding fee scale or something.  We were even thinking of going downtown and spending the day at Stroger Hospital to see if we could get in there.  I called around and had an appointment at Rush with a Hematologist there and was connected with the person who can help me get on the sliding scale!! Great!!  Just couldn't get in for about three weeks, not a real big deal at least I thought!!  In the meantime I was trying to figure out where to go to the doctor at you know for like a general praticioner.  So we got an appointment at this place called Access they are also a sliding scale. 

 Monday morning I go in to Dr. Hartings office for a blood draw, this is routine now and I am taking myself and not passing out!!!  I have to say by this time fear isn't even a factor anymore, you see because this is an oncologists office that I am going to have this done.  I'm sitting in the chemo room while all these people are getting treatment for there cancers and I'm just getting a little blood taken!  So I got over being scared real quick!!!  My count had dropped down to 59,000 however Dr. Harting was out of town so her replacement said to stay at the 60mg of Prednisone and come back on Wednesday for another draw.