I spent the morning with Kristy. I filled her in on what happened Friday night. This triangle of doctors is so complicated~communication doesn't seem to flow! She did every test that she thought Dr. Thompson would want and ordered the EGD/stomach biopsy & high resolution chest CT both to be completed before my next appointment on June 7th. She insisted that I stay on 40 mg of prednisone daily until they figure something out. (Anyone who knows me, knows how much that order bothered me).
On my way to work I called National Jewish to leave a message for Dr. Olson as she had requested on Friday evening. I gave the nurse the details of the CBC, the angio-CT, and the plan for the HR-CT & EGD. Since we had just spoken at length on Friday, I didn't expect her to return my call today. I was simply reporting back results.
At the SBDM meeting I was crushed when Leigh Ann announced they had hired the 2nd grade teacher to replace me next year. I stepped out of the room to pull myself together. A minute later she came over baffled by my sadness. It was just a tough thing for me to let go of, I told her I just needed time. This whole thing has been so hard. I feel like I've been dangling by a thread while I'm hiding a huge secret from my team and crumbling on the inside. One day Leigh Ann would report to me that it looks like I'll be able to stay at Southern and possibly even work with the 2nd grade team and other days she says Lucy Overall will get the position and I'll be sent to another school. At this moment though, I wasn't thinking about any of that, I was purely overwhelmed with the stab of my classroom being taken by another teacher. My students, my room had just been given to some new teacher and I simply needed a few minutes to deal with it. She was convinced it was about the intervention position though, and began spilling her guts like an open floodgate. She told me I got the job as 2nd grade interventionist and would get to stay with my team. What?? Wow? How? When did this happen? Huh? I was so confused, thankful, shocked, and baffled... Is this all I had to do all along, walk away teary eyed to get her to man up and make a final decision about my job!?!? Then she cried and asked for forgiveness and a hug.
What a day!
Well, it wasn't over, much to my surprise, the phone rang at 6:15 and it was her....yes...Dr. Olson. She never ceases to amaze me. She wanted to know how I was feeling and to let me know that she and Dr. Katial had a long meeting about me this morning. ???? What?? I thought? Did I hear her right? Two doctors in Denver had a meeting about me? Why? She said they discussed what's been going on with me and think it would be a good idea to have me come back out this summer and start from scratch with testing so they can get to the bottom of things. They would like for me to see the rheumatologist there and have the bone marrow biopsy there as well. My mind was racing as she spoke. I didn't even expect a call, much less such a load of information. OK, okay...
Monday, May 23, 2011
Friday, May 20, 2011
I don't know anymore
I went to see Dr. Thompson Tuesday hoping for a plan and information from his teamwork with Dr. Olson, but there wasn't one. He said they hadn't had a chance to talk. I was pretty bothered by that, but decided to give him the benefit of the doubt. He talked with me more about how serious it is for me to stop teaching in the classroom. He also said he would do his best to help me finish this school year with the kids. He seemed to understand how hard all this is for me, and wanted to give me what he could for now. I have to continue taking high doses of steroids until they figure out what to do about the eosinophils & until I am away from the school environment.
Wednesday morning, (still on steroids & strong antibiotics btw) I woke with chest pains and a sore throat. That night I had a temp. :( It wasn't horrible, but it was certainly frustrating. My voice was screachy and my chest continued to hurt...a lot. Wednesday and Thursday were long days with no breaks. Friday I called the doctor at 2:40 ~ my first chance. Kristy called back at 5:10 quite concerned that I had gotten sick while on the meds. She said to try and push through the weekend & she would see me in the office Monday morning because of my sickness and because they finally had a new plan. She said Dr. Thompson had finally talked with Dr. Olson, but he didn't call me because he didn't have my number and wouldn't be back in the office until June. She wanted me to just call Dr. Olson for the explanation of all they had discussed.
I was a bit frustrated with the lack of help I got from Kristy considering it was a weekend. I would just have to push through like she said though. I did call Dr. Olson immediately and she returned my call within minutes. She was instantly distracted by my voice and concerned about my current well being. Their plan included a chest CT and more lab work which she insisted be done immediately. She explained that with my eosinophils so high, my cardiac/medical history, & chest pains + feeling crummy while still on meds it was simply too risky to wait until Monday. The rest of the plan includes an upper GI, a stomach biopsy and a possible bone marrow biopsy. She said if the doctors here don't seem to be getting things figured out after these steps, she wants me to come back out to National Jewish again...
I just don't know anymore, I don't know how I feel, what I'm going to do, where I'm going to be...I've gone back to my old ways of lying to nearly everyone. I can't tell people how bad I really feel~I just do everything I can to fake it through the day. I'm done, I'm just done. I don't know what to do about anything right now...
Wednesday morning, (still on steroids & strong antibiotics btw) I woke with chest pains and a sore throat. That night I had a temp. :( It wasn't horrible, but it was certainly frustrating. My voice was screachy and my chest continued to hurt...a lot. Wednesday and Thursday were long days with no breaks. Friday I called the doctor at 2:40 ~ my first chance. Kristy called back at 5:10 quite concerned that I had gotten sick while on the meds. She said to try and push through the weekend & she would see me in the office Monday morning because of my sickness and because they finally had a new plan. She said Dr. Thompson had finally talked with Dr. Olson, but he didn't call me because he didn't have my number and wouldn't be back in the office until June. She wanted me to just call Dr. Olson for the explanation of all they had discussed.
I was a bit frustrated with the lack of help I got from Kristy considering it was a weekend. I would just have to push through like she said though. I did call Dr. Olson immediately and she returned my call within minutes. She was instantly distracted by my voice and concerned about my current well being. Their plan included a chest CT and more lab work which she insisted be done immediately. She explained that with my eosinophils so high, my cardiac/medical history, & chest pains + feeling crummy while still on meds it was simply too risky to wait until Monday. The rest of the plan includes an upper GI, a stomach biopsy and a possible bone marrow biopsy. She said if the doctors here don't seem to be getting things figured out after these steps, she wants me to come back out to National Jewish again...
I just don't know anymore, I don't know how I feel, what I'm going to do, where I'm going to be...I've gone back to my old ways of lying to nearly everyone. I can't tell people how bad I really feel~I just do everything I can to fake it through the day. I'm done, I'm just done. I don't know what to do about anything right now...
Friday, May 13, 2011
thankful
Sometimes I meet people on this journey that I am immediately thankful for. You know, the kind of people you'll probably never have a chance to be friends with, or get to know on a personal level, but that you wish you could. Today, I had a follow up appointment with Dr. Hughes and he was interested in trying to help my eosinophilia. I was excited & welcomed any help or ideas. He introduced me to RaeJean, the office manager, who could meet with me and gather information. She was one of those special people.
For at least an hour, she and I sat in a tiny office while she scrolled through my entire (Central Baptist) medical history on a laptop. She was searching for any tiny loophole to use to make me eligible for the medication Xolair. Doctors have been trying to get me on this medicine for years and I have never qualified. You have to have severe asthma, a failed spirometry, and a IGe level above 30. (My level is 8). She didn't find an answer yet, but she did seem to form a remarkably strong bond with me. She was startled by some of the things in my history. As she read she would ask for details or praise me for my perseverence. I could tell that she was determined to help me. She even asked for Dr. Olson's phone number so she could get more information on my missing medical history. She promised to call me as soon as she had news to share. She made me feel like there is a chance again that something could help me. I am so thankful for RaeJean. She has already made such a difference in my life. :)
For at least an hour, she and I sat in a tiny office while she scrolled through my entire (Central Baptist) medical history on a laptop. She was searching for any tiny loophole to use to make me eligible for the medication Xolair. Doctors have been trying to get me on this medicine for years and I have never qualified. You have to have severe asthma, a failed spirometry, and a IGe level above 30. (My level is 8). She didn't find an answer yet, but she did seem to form a remarkably strong bond with me. She was startled by some of the things in my history. As she read she would ask for details or praise me for my perseverence. I could tell that she was determined to help me. She even asked for Dr. Olson's phone number so she could get more information on my missing medical history. She promised to call me as soon as she had news to share. She made me feel like there is a chance again that something could help me. I am so thankful for RaeJean. She has already made such a difference in my life. :)
Monday, May 9, 2011
eosinophilia
Good news, good news ~ the fight was on this weekend! By the Grace of God my weak body began to make a come back and started fighting to recover! Whoo hoo! I'm still not there, but can already feel such a difference. I am finally starting to feel better. I will beat staph before round three is over. :)
At rehab today, Kristy rushed around the corner to check in on me. She was so excited to see that I was finally on the right track. It's so great to have doctors on my team who are so dedicated to making sure that I get better. She grabbed my shoulders and said, "Now Toni, PLEASE, just don't catch anything else for the rest of this week! You must let yourself get well before you start getting sick again."
I kind of laughed at first, then I could tell she seemed a bit upset. She lifted the papers in her hand and got very serious. My lab results had just come in and my eosinophil count had jumped from 1334 to over 3000. She seemed very concerned and frustrated. She said she had just gotten off the phone with Dr. Thompson and he was also concerned. He was planning to call Dr. Olson tonight to brainstorm next steps for me. She said they're at a complete loss as to what is causing the increase. I have to remain on the high dose of steroids until they figure something out. He wants me to come back in next Friday because he hopes he and Dr. Olson will have a plan by then.
I have to admit, I teared up when Kristy was talking with me. Honestly though, it wasn't because I was scared about what could be wrong. It was because I was exhausted. I'm so tired of information that leads to dead ends. I'm so tired of the weird results that no one knows what to do with. The rollercoaster is wearing me out. It's just getting so hard to "handle" the information like I want to. I wish I was a stronger person.
At rehab today, Kristy rushed around the corner to check in on me. She was so excited to see that I was finally on the right track. It's so great to have doctors on my team who are so dedicated to making sure that I get better. She grabbed my shoulders and said, "Now Toni, PLEASE, just don't catch anything else for the rest of this week! You must let yourself get well before you start getting sick again."
I kind of laughed at first, then I could tell she seemed a bit upset. She lifted the papers in her hand and got very serious. My lab results had just come in and my eosinophil count had jumped from 1334 to over 3000. She seemed very concerned and frustrated. She said she had just gotten off the phone with Dr. Thompson and he was also concerned. He was planning to call Dr. Olson tonight to brainstorm next steps for me. She said they're at a complete loss as to what is causing the increase. I have to remain on the high dose of steroids until they figure something out. He wants me to come back in next Friday because he hopes he and Dr. Olson will have a plan by then.
I have to admit, I teared up when Kristy was talking with me. Honestly though, it wasn't because I was scared about what could be wrong. It was because I was exhausted. I'm so tired of information that leads to dead ends. I'm so tired of the weird results that no one knows what to do with. The rollercoaster is wearing me out. It's just getting so hard to "handle" the information like I want to. I wish I was a stronger person.
Thursday, May 5, 2011
Fighting Staph
Sadly, Dr. Thompson was right. I was getting a sinus infection. I toughed it out until it got the best of me a week later. Joelle talked with the doctors and they called in a prescription for Bactrim on Wednesday, April 20th. It hasn't worked in the past, but I thought it was worth another try. I was feeling pretty bad and my big Heart Walk was scheduled for Saturday morning! I was so determined to walk no matter how I felt! Unfortunately (& slightly for the best) it was cancelled due to thunderstorms. I spent the rest of the weekend fighting to feel better without much success.
That week I did continue to get worse and had appointments with both the pulmonologist and the ENT. Test results revealed that the infection was staph in my sinuses. My antibiotic was changed and other meds were added. They seemed confident it would take care of the infection. Other test results were also in. My eosinophils were higher than before ~ 1334 now but all the tests for what could cause the increase were negative. Dr. Thompson was at a loss. He told me to stop taking Singulair because it has been known to increase eosinophils in some studies.
Today was my last day of Levaquin and my symptoms have been getting worse. Dr. Thompson is out of town, so I made an appointment with Kristy. She said the staph infection has spread to my lungs which certainly isn't a good thing. There were some patches on my x-ray and my lung function was below 40%. She prescribed a new antibiotic and increased the steroids. She also took some blood to check my eosinophils again and do another CBC. She's going to check in on me at rehab Monday. Hopefully these changes will do the trick, if not, she said the next step will be the hospital.
Here's to high hopes and much faith that some staph will be beat down in my body this weekend. :)
That week I did continue to get worse and had appointments with both the pulmonologist and the ENT. Test results revealed that the infection was staph in my sinuses. My antibiotic was changed and other meds were added. They seemed confident it would take care of the infection. Other test results were also in. My eosinophils were higher than before ~ 1334 now but all the tests for what could cause the increase were negative. Dr. Thompson was at a loss. He told me to stop taking Singulair because it has been known to increase eosinophils in some studies.
Today was my last day of Levaquin and my symptoms have been getting worse. Dr. Thompson is out of town, so I made an appointment with Kristy. She said the staph infection has spread to my lungs which certainly isn't a good thing. There were some patches on my x-ray and my lung function was below 40%. She prescribed a new antibiotic and increased the steroids. She also took some blood to check my eosinophils again and do another CBC. She's going to check in on me at rehab Monday. Hopefully these changes will do the trick, if not, she said the next step will be the hospital.
Here's to high hopes and much faith that some staph will be beat down in my body this weekend. :)
Tuesday, May 3, 2011
Tough Decisions
Friday, Dr. Olson called. She was the third doctor of the week to have a serious conversation with me about my job. Talk about a strong message. :( All three of them talked with me about what working around children is doing to my health. How I am stronger in the summer and sick again each time I go back to work after a break. It's getting harder for me to fight off infection and viruses even with stronger medicines. Hearing it for the third time was tough. I've been ready to do so much ~ even pack up and move to Denver, but give up my classroom...my students...
Dr. Olson talked to me sincerely about it. She asked about other options in the school. She thought that an intervention type position would be the best option from a medical standpoint for my health. In that position, I wouldn't be exposed to germs and illness as heavily as a classroom teacher. I would only work with small groups of children at a time and in a more controlled environment.
Since this conversation, I've talked with Leigh Ann and have started the medical accommodations paperwork with human resources at central office. I know it's what has to happen because I can't physically continue to teach until I am better. Stacey, Debbie, Leigh Ann, & my family are the only people I've told. So many things have been running though my head. I feel like a liar each time I have to work on something for the 2nd grade team for next year. I don't know what is going to happen because there isn't an intervention position at our school right now. What I do know is that my heart is absolutely crumbling inside. I love things about my job that so many classroom teachers hate. I start crying each time I think about packing up my room, making classlists, or typing summer letters. I have dreamed of retiring as a classroom teacher. I feel like such an enormous failure in my life. It is so frustrating to not be able to take medicine and just get better. I look back now and wonder where I went wrong.
I still have to believe things are going to get better and I know this is All For Good or I wouldn't agree to it. I have to believe. I also know that I can and will be an amazing intervention teacher. The thing is, right now, it's tough, and it really hurts...
Dr. Olson talked to me sincerely about it. She asked about other options in the school. She thought that an intervention type position would be the best option from a medical standpoint for my health. In that position, I wouldn't be exposed to germs and illness as heavily as a classroom teacher. I would only work with small groups of children at a time and in a more controlled environment.
Since this conversation, I've talked with Leigh Ann and have started the medical accommodations paperwork with human resources at central office. I know it's what has to happen because I can't physically continue to teach until I am better. Stacey, Debbie, Leigh Ann, & my family are the only people I've told. So many things have been running though my head. I feel like a liar each time I have to work on something for the 2nd grade team for next year. I don't know what is going to happen because there isn't an intervention position at our school right now. What I do know is that my heart is absolutely crumbling inside. I love things about my job that so many classroom teachers hate. I start crying each time I think about packing up my room, making classlists, or typing summer letters. I have dreamed of retiring as a classroom teacher. I feel like such an enormous failure in my life. It is so frustrating to not be able to take medicine and just get better. I look back now and wonder where I went wrong.
I still have to believe things are going to get better and I know this is All For Good or I wouldn't agree to it. I have to believe. I also know that I can and will be an amazing intervention teacher. The thing is, right now, it's tough, and it really hurts...
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