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!!!