Are you ready for this?

If you keep asking for answers long enough, eventually they will come flowing in like a river. Today I was showered with much of the information I've been waiting for. Are you ready for this?

It all started when Kaci called and gave me the name of a scheduler at the University Hospital to call to get all the information I would need about my impending surgery. I gave Judy Bryant a call and she was a dear sweet lady. She told me more than I wanted to know about how dangerous and invasive this surgery will be. She let me know that I will likely be staying at the hospital afterwards for a day or two. I was shocked to hear that I have to be in Denver for at least three weeks for the entire process. This is much more serious than I ever expected. She said my other health concerns and the complicated nature of the surgery all factor in to the long stay. I'll be in Denver at least from October 3 - 21. Wow!

To top it off as I was leaving school, my phone rang again and it was Dr. Olson. She told me she'd been analyzing the EMG report and it is evident that rather than hypereosinophilic syndrome, my diagnosis is actually Churg Strauss. Whoa...I didn't expect that. The treatment they are going to try is a chemo drug called azathioprine. She's ordering a blood test first to make sure I can metabolize the drug, but as soon as those results are in she wants the treatment to begin. She made several comments about how important it was that this treatment start as soon as possible. She had just called Dr. Thompson and discussed the plan with him. I talked with her about continuing the plan with my rheumatologist and she took his number to call him tonight.

This is really big news, news that I know hasn't even begun to set in and I don't know when it will. I've read some about Churg Strauss and know about ten in a million people are diagnosed with it. I have a diagnosis. I could actually start to get better soon...for real this time. I get to start a treatment soon - to help me feel better. I don't know if it's crazy to be relieved and scared at the same time, but I am. Dr. Olson was very concerned about the fact that this treatment is a strong immunosuppressant - especially with me. She is concerned about how I will stay strong considering my current immune system and my work environment. I have to believe though, that the mere fact that we know what we are fighting FINALLY gives us the advantage. It has to help. She has never given up the battle to help me ~ I am confident that she won't be stopped by pesky side effects. This has to be All Good.

finally an EMG

WHOO HOO! Prayer Perseverence Pestering ~ pick your p-word but I think they are all to credit!! Katie (the scheduler at Dr. Thompson's office) actually answered the phone yesterday when I called. I could tell she wasn't thrilled that it was me (I've only left 700 messages recently). Get this though...there is no big catastrophe, EMG malfunction, or other reason the scheduling could not occur...she said when she got my first message she went and talked with Dr. Thompson. Without saying negative things about him, she made it clear that he simply wouldn't help her with the orders for the tests for me. Rather than calling me right away to let me know so I could take action, she chose avoidance. I was stunned by her honesty. I was a bit disgusted too.

This is one of those times where you have to make a choice in life - a choice for yourself - and that's what I decided to do. I completely released all possible negative feelings that could come from what Katie shared. It was over - she's talking to me now - I can't change the past so I won't hurt myself by holding on to it.

We both moved forward and together, (without Dr. Thompson) we got the test scheduled!

I went in for the test today at 10. I know I've been through a lot of tests and I should be getting tougher - but I have to admit, this wasn't an easy one. Debbie offered to drive me over and I'm so glad she did. She was a wonderful distraction. The test involved electric shocks pressed into my skin about every 4 inches from my neck, down my arm, back, and legs. I truly felt like a dog being tortured with a strong shock collar - I've felt one & this was a good bit stronger. Part two used a needle instead of metal prongs but covered the same area. Geez - the end of all this has to be near. Minutes after the test Debbie rushed me back to work. She pulled to the front door. I took a breath, brushed away the anxiety & emotion from the test, put on my smile and walked back into work to finish the day.

The good news...really good news is that they said they'd have the report ready THIS AFTERNOON!! Wow, that's wonderful. I gave her Dr. Olson's fax number and she promised to fax it directly to her as soon as it was ready. Of course they weren't able to tell me much, but the doctor that performed the second part of the test said he did see some discrepencies that he'd be looking into. All I know is that a negative on this test means no Churg Strauss. I don't know what discrepencies would mean?? I guess all I can do now is continue to wait for answers and keep pushing through...

...and somehow I keep getting up again

So, I did get up again. I did "wipe my boots off" so to speak and tried my best to take matters into my own hands...and I'm still trying. I can't begin to see past this fog I'm living in right now. Oh but I wish I could. I wish for clarity in this frustration. I wish I could know and understand why Dr. Thompson won't order these tests?? That's right, I called, and they haven't been scheduled just because...no reason, just because he won't right the orders and no one will schedule them. I've called multiple times daily. I've stopped by the office & I've even tried ordering the EMG myself through a neurologists office. All to no avail. I feel so broken and weak...so worn down. Somehow though, I'm still pushing through. Still getting up each day and trying again. I've caught myself wanting to give up, but I just know that it's not an option. So I get up, pull myself together, and try again. My life has been proof though that prayers work...miracles...hourly! The timing just isn't mine (I have to remember that). It's just so hard to understand why things are playing out this way when I'm in the midst of it.

Surely something will happen soon. Something good has to come from my perseverence...

down for this count (but I'll get up again)

The hits came in droves today. Of course we all know that's just how it works in life. I put every ounce of my effort into hiding the evidence from the blows when people were around throughout the day.

It all started with finding out that the message I left for Dr. Olson last Thursday (& the nurse posted as urgent) was never filed. That means I've been waiting seven long days for a response to something that never existed! Seriously!? You've got it, there flowed my first tears of frustration. It's not like I was asking for Tic Tacs ~ this really is important stuff. The medical leave paperwork from central office expires in eight more days. Seven days were just completely wasted because of a lost message - ugh -frustration. Deep breath though, nothing can be done about that now. This nurse took my message and promised to hand deliver it to Marsha (Dr. Olson's nurse on Kaci's day off).

The next blow came when Marsha called. She said Dr. Olson probably would not be calling me because she didn't have the results from the EMG. I was so ready to have a complete and total meltdown but instead I just froze. Marsha sensed the tension and repeated herself. I tried to compose my shaking voice and simply replied, "What is an EMG? I didn't know I needed to do that??" She could tell I was upset and probably had no idea why. It turns out Dr. Olson talked with Dr. Thompson last Monday night after she talked to me. She asked him to order an EMG and another test on me asap and get the results to her. These tests would help to rule out Churg Strauss and solidify the treatment options. I didn't know she needed these tests and he hasn't done anything to make it happen. I can't even describe how betrayed I felt. It was as if Dr. Thompson's negligence was delaying my medical treatment - the treatment I've been waiting and hoping for for so many years now. It is so close and I'm only 2 tests away. He couldn't just place those orders last week? Would that have been so hard to do? I just don't get it? Why is everything so complicated?

I am guessing after Marsha talked with me Dr. Olson realized she probably should give me a call even without those results. She called around 7:20 but it wasn't a heartwarming conversation. She let me know that Dr. Katial could not find any options for getting the IL5 treatment for me. This was hard to hear. I told her about the possibility of medical leave and she said it might not make a difference. :(  For now, assuming the nerve conduction test results are negative, they are looking at using the second treatment option, hydroxyurea. It's an older medicine that isn't quite as successful as IL5 but still very good. It also has a long list of pretty severe side effects. I'm not sure how they compare to the side effects of steroids, but it's just frustrating to think of trading one problem for another without gaining much benefit.

Finally, the last punch that knocked me down for the count was the medicine. It's a little thing after losing hope for IL5 but it was enough to make me give in. Tomorrow I have to start back on the meds that were making me so sick for the last two weeks. I have a respiratory infection but my stomach has been pain free since I finished the meds on Saturday! Maybe it won't be so bad this time though. That's what I'm gonna hope for...

This is what I know... Today is proof that I'm not strong enough on my own, but I can do all things through Christ who gives me strength.  He carried me through today. I did "get through" but I'm definitely down for the count. But, tomorrow, I will get up again. I'll smile at everyone I pass. I'll wake up believing and knowing this is all for good and it's all part of a greater plan. I'll keep moving forward and keep getting up again and again.

facing the giants

The First Day of School! This is the eleventh time I've been on the teacher side of those words (12th if you count student teaching). This year was the first year ever (in my school life) that I was filled with dread though. I guess that proves that doing something to save your own life doesn't necessarily mean your heart will be on board with the plan...my heart is still in the classroom. No amount of reasoning or logic has been able to sway it yet. I'm hoping time help...and hopefully sooner than later. I really hoped I'd be handling this a lot better by the time school rolled around. 

My stomach was still hurting quite a bit and my peak flows have been pretty low. I was in my little room doing all I could to get myself in the mindset of "I'm completely okay" when a teacher walked in. She was complaining about getting a new student last minute who she knew had been a behavior problem in my class two years earlier. I stood there, listening to her complain about a child she didn't know. I calmed her down, reminded her he is older & how much he improved while I had him, & how lucky she is to get a student we know ~ all the while I was crumbling inside with jealousy, anger, and sadness. I was hating myself for being sick and wishing more than anything that I could be his teacher again.

I am thankful beyond measure for Debbie. I know it wasn't her only reason, but I know that she chose me to help in the office with transportation tags on the first day because she knew I wasn't ready to handle facing the kids, parents, and void of my own room. It was a true gift. I was so busy from the first bell to the last that I hardly had a chance to realize where I was. Tomorrow, I'll be ready to face the giants. I am thankful for this job. My heart just needs time to get on board with it. I'm all about making the most of things. I just haven't handled this "limit" that has been placed on my career very gracefully. I'm working on it though...I'm working on it.

fear~a foreign feeling & I don't want to get any closer

I may worry about certain things like people & getting a job done etc. but I have never been the type to be scared of or about things. I don't know if it's because of how I was raised or simply part of my make-up, but I'm not a fearful person. That's probably why the few times I have experienced fear, it has really shaken me up. I truly feel for people that are scared all the time. That overwhelming sense of terror and lack of control is paralyzing.

Today is my fifth day of hardly eating or drinking because of this medicine. Each day I've had enough liquid to swallow the medicine and have tried a bite or two of something here or there to see if I can handle eating again...no luck yet. I was working in the yard tonight, more as a distraction than because I had to. I was sitting on the edge of the brick flower bed pulling weeds. I remember coughing and having trouble breathing. The next thing I remember, I came to flat on the concrete. Jackson was on the ground beside me with his head on my chest. The back of my head is very sore. I have no idea how long I was out or why I passed out. I don't know if it was from not eating or because of my breathing. I don't know, but I do know I woke up and I'm okay now...that's what I have to focus on...

I found out last night that I have to take this medicine for 6 more weeks. Something has to give. I'm just not strong enough to do this. Tomorrow, I'm going to try to take small bites and sips all day. Maybe that will not be enough to make it too much worse, but give me more nourishment to help me get through. It's worth a try. I'm also going to have to have a serious talk with Dr. Ramakrishnan. Surely there is an alternative to this medicine he can try for the next 6 weeks that won't make me so sick.

I just know tomorrow will be a better day. :)

IL5 anyone?

The call finally came~at 5:50 p.m. National Jewish lit up on the screen and it was Dr. Olson's comforting voice on the other end. She said Kaci got the last of the results from the University this afternoon and she and Dr. Katial had just finished going over them. Things were complicated though. The diagnosis was not cut and dry. According to the results and all the other tests, they believe that they will label me with Hypereosinophilic Syndrome. The problem is, regardless of the diagnosis, the treatment I need is called IL5 (anti-inter leukin5) and besides the clinical study Dr. Katial is doing, they are having trouble finding it for me. It apparently isn't readily available in the midwest. Dr. Katial is going to do everything he can in the next week to find the treatment for me and they'll get back to me with the information. She didn't give me anymore details except that I really need that treatment.

I talked with her about the meds making me sick and my "not eating" option. She was very upset (recall our "you can't lose anymore weight" conversation on day 5). She told me to stop the azithromycin for now to see if that would help. She asked me to go have a renal ultrasound done. She said there was high number of eosinophils in my urinalysis so she needed this test as soon as possible. She also said they decided I should stop the Zyflo because of Churg Strauss??? She moved on to another topic before I could ask more questions about that. I thought they thought the diagnosis was hypereosinophilic syndrome & not Churg Strauss - so why stop Zyflo because of Churg Strauss??? I'll have to ask that question later.

Next, she informed me that Dr. Ramakrishnan decided my invasive sinus surgery needs to be in six weeks. WHAT?? Six weeks is much sooner than I had expected. To top it off, the staph is a bit worse than they thought and I have to stay on this antibiotic for the next six weeks. (It's quite possible that I might not make it. I really am not strong enough to make it another six weeks on this medicine.) I asked Dr. Olson if we could change the medicine and she put in a request to Dr. Ramakrishnan for me. Of course I told her I was ok and I could handle it, and I'm sure I can. That's right, I can, I can handle this.

So, for now, I'm waiting to find out where I will need to go for treatment and how long the treatments will last. I guess I don't really know anything except that I really need some IL5 to survive.

waiting makes me sick...or is it the medicine...

Anyone will admit that waiting for something like a diagnosis or test results is like waiting for a pot to boil. I find myself being hopeful one minute and confused the next. I anxiously pack my phone everywhere I go. My heart races each time it rings looking for the words National Jewish to pop up on the the screen. Not yet though, no word yet. Oh she just must call soon!

While I wait, I seem to be getting sicker each day. At first I thought it was anxiety, but now I'm pretty certain it's the medicine. I've always thought of myself as someone with an iron stomach. With all the years of steroids and strong meds I've been on, believe it or not, I've never had stomach problems with any of them (until now). That's why when Dr. Olson mentioned that side effect with these meds, I didn't pay much attention.

Boy is this different though. I've never felt so sick to my stomach. All I want to do is curl up and hold my tummy like a child. It's not your typical nausea~no unspeakable side effects...just an unbearable sick feeling that won't go away. I've tried everything I know to try and nothing has helped except not eating at all. I know that's no grand solution. I'm no fool - but I also know that I can handle a lot and I can hide a lot, but I've met my match. This is the only answer short of me staying in bed curled up in a fetal position. If I don't eat, I can tolerate the sick feeling the medicine causes. Any amount of food or drink seems to amplify it though. So, appropriate medical choice~I doubt, but the make it through another few days until someone calls choice~yeah.