Let's start off by saying I'm doing better emotionally this week. I haven't cried for at least three days, so hip hip hooray for that! I have no idea what the deal was last week; I think I was just overwhelmed with everything. This week is better.
Yesterday, I had a Cardiolite test at the Heart Center. It is basically a treadmill stress test with radioactive stuff put in my blood so they could take pictures of the blood pumping through my heart to see if it was pumping correctly and all. It was ordered by Dr. Fouad to be completed before my cardiac exercise program (which insurance won't cover, but we are working on that). I have the results back already, and everything looks good! I was absolutely wiped out after the test, though, and it is still so hard to breathe today. Keep in mind that I was only on the treadmill for 7 minutes. Oh, that is so sad. The man running the test asked me why I needed to stop, if my legs were tired, I was dizzy or what, and I told him that my legs were fine, but I was dizzy and could hardly breathe! Needless to say, Ryan and I are laying low today, watching movies and staying in our pjs. The stairs just look like Mt. Everest to me... there is no way I will be going up them again until it is time for me to go to bed. Thankfully, a friend of mine was going to the grocery today and picked up some things for us. Another one called just to check on me; several are praying. I feel loved.

Avoidance Issues

I've been avoiding this blog, in case you haven't noticed. I'm not sure exactly why; I think part of it has to do with Scott being back at school, so I'm busier with the kids and partly because I'm very emotional this week. For one reason or another, I've cried at least once every single day this week, most days multiple times. It all started on Monday when Scott (after reading an article on autonomic nervous system disorders) suggested that I shouldn't go on roller coasters anymore because of my blood pressure no longer stabilizing on its own. Yep, that was the beginning. I know that isn't really a big deal, and it's not like we go to amusement parks all the time (though I DO love roller coasters), and in the grand scheme of things, that really should be the least of my worries, but for some reason that really made things more real. As in, I might not get better. That's really hard to write. I'm trying not to get too far ahead of myself, and I know I haven't taken the ANS test yet, but everything just seems to line up a little too well. I also don't want my friends/family/blog-readers to think that I always have a positive attitude about my situation. The truth is, usually I do. Typically, I'm rolling with the punches and am leaning on God to get me through; I can even make light of the situation and find that silver lining! This week, however, I can't. I'm scared. I'm nervous, uptight, can't sleep, can't relax, but most of all, just plain old scared.
I also procrastinated on writing this week because I wasn't sure what my blog-readers wanted to read about while we wait to go back to Cleveland next week. For example, do you want to hear how our amazing little girl earned an Outstanding Otter award at her school this week for being responsible? Or chuckle as you imagine my kitchen floor covered in bits of carrots from a small explosion under my kitchen sink while I was making dinner and chasing my adorable two-year old nephew (aptly named Chase?) Or perhaps you want me to tell you that Ryan, at five, screamed like a banshee out of complete and total fear of the world's gentlest (is that a word? oh, I've been away from teaching for too long!) dog. Any advice, by the way, would be most helpful on that last one!!
Several people have asked me questions about autonomic nervous systems disorders, and I'm not very good at relaying the information (especially with my short-term memory being what it is right now). Here is an article that I found very helpful if you want more info:
http://www.dana.org/news/brainhealth/detail.aspx?id=9780
Thanks for joining me on this journey. It's nice to know I have so many people praying for me and willing to help me and my family!

Home Again

Mom and I got home last night after a tiring day at CC and a long drive home. I was really feeling the pain and chest pressure of all the walking and activity, and am still pretty worn out today. The appointment with Dr. Fouad, whose specialty is syncope and autonomic nervous system disorders, went pretty well. The way she asked for information was not very clear or chronological and things could have gone smoother on that end if, which made it frustrating for me, but as my dad put it, "you're not paying her for personality." She is one of the few doctors in the country that specializes in this area, so I am blessed that she is only a few hours away. She ordered a hemodynamic test, a blood volume test, an autonomic nervous system test, and prescribed support stockings and a cardiac exercise program. We were able to schedule the tests and my hyda scan all on the same day: January 29. I am pleased with the end result, and am hopeful that the tests will show what we need to show. Because Dr. Fouad is so specialized, we are having trouble getting my follow-up appointment scheduled. I am supposed to see her in three months, but her next available appointment is in May; if I am not able to return to work, I will lose my insurance next February, so I need to be diagnosed and cured (or at least done with testing and doctor appointments) by that point. Please pray that we get this timing issue worked out. Dr. Fouad's staff is supposedly going to create an appointment for me, even though she is booked solid, and call me with a date and time. I am praying that they do. Have a great weekend, all! Teacher-friends, enjoy your three day weekend and work day today!!!!

You get what you pay for

In the world of medicine, you don't always get what you pay for. Here at the Cleveland Clinic, we are definitely getting our money's worth! Both doctors we met with today spent at least a full hour with us, looking through my binder (which they appreciated, yea!) and asking questions. Dr. Su, the GI doc, saw us right away even though we were 45 minutes early for our appointment. She is ordering a few tests, showed me a few exercises to stretch out my stomach for when it hurts, and wants to hear what the cardiac docs have to say. There are four possible causes of my stomach pain. I don't remember all of them and my notes are in the car, but one was that there may not be enough oxygen getting to my digestive organs causing them to not work correctly. Another is that my gall bladder opening may have closed up over the last few years (removed in'06) and that is somehow slowing down my system; I forget the other two. Anyway, the cardiac EP doctor spoke with me for an hour and determined that I have an autonomic nervous system disorder and was able to get me in to see Dr. Fouad tomorrow! She specializes in syncopy and autonomic nervous system disorders, and is the doctor I tried to get an appointment with originally (but couldn't see until Feb 23!). Thus, we are staying another night in Cleveland so that we can see this fantastic doctor. My appointment is at 1:15pm, but I am supposed to arrive early in case she wants to run tests before seeing me. Whatever these doctors are charging, they are well worth every penny. I feel like they are more than willing to get to the bottom of this once and for all and I am so thankful! Please pray for my appointment tomorrow and safe travels. Also continue to pray for Troy and Alicia. We saw them again today and they were both struggling. Troy was in a lot of pain and Alicia was looking weary as well. Here is a link to their blog: http://thefloorfour.blogspot.com

A Friend Named Wanda

Thanks to our new friend, "Wanda," mom and I arrived in Cleveland safe and sound. Wanda would be the GPS that mom's friend, Becky, let us borrow. Thank goodness she did, because the directions I had from mapquest were all kinds of crazy! We arrived just after 6pm and headed straight to the hospital to have dinner with Alicia (and her mom) and visit Troy. It was great catching up with Alicia and hear how she is holding up. She got to enjoy a pregnancy massage today, so that helped her relax, but she is not feeling very well (contracting, uncomfortable, etc) and is pretty sure she will be going into labor in the next week. Please pray that she makes it until they are home so that Troy can join her in the delivery room. After dinner, we went to Troy's room to visit him. I was amazed at how well he looked! He was able to eat a little bit today and cracked a joke or two, which shows that he is slowly improving. I am so thankful that God is healing my friend.
Now, mom and I are all checked into our hotel and enjoying some downtime. We were blessed enough to upgraded to the executive floor, which will include breakfast tomorrow, for free! Our room is really really nice, and I could get used to travelling like a business person. Please pray that we get some sleep tonight and that the appointments go well tomorrow. Thanks! Karin

Heading To Cleveland

Well, tomorrow's the big day! Sort of... Tomorrow, my mom and I will leave for the Cleveland Clinic. I'm excited, yet nervous about my appointments on Wednesday. I know God is going before us in all of this, and I can't wait to see what happens, yet what if they can't figure me out either? I didn't sleep much last night as the list of all I had yet to do ran through my head. I think it is so much harder to plan for a trip when you are a mom. There are schools to contact, emergency plans to make, schedules to create for the kids, husband, grandparents, myself, my mom/chauffeur/right-hand lady. I hope I don't end up forgetting something important, like the 3 inch binder I created that has all of my medical information in it! I will try to be patient and settle down so I don't wear myself out before I get everything accomplished. This verse, for example, is keeping away the nagging thoughts of "What if...?" "For I have learned to be content, whateve the circumstances. I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well-fed or hungry, whether living in plenty or in want. I can do all things through Christ who gives me strength." Phillipians 4:11b-13
Mom is taking her laptop (I think), so I will update the blog from Cleveland. If we have time, we will see Troy and Alicia tomorrow night. His surgery went well, but the recovery is very painful. Please continue to pray for this sweet couple. Thanks! Karin

Countdown to Cleveland

Happy New Year to all! 2009 ended very well for me, as the last two days of the year were very good and I nearly felt normal! I took full advantage, meeting a friend at Olive Garden, eating more than my share at the New Years Eve party, even playing the Wii a little as well! Yes, I paid for it the next day, but it was glorious bliss to feel and act normal for a few days!!! I am clinging to those memories now, as yesterday and today have been about as bad as it can get, with my stomach and breathing tag-teaming me...and I think they might be winning.
Next Tuesday, my mom and I will be heading to Cleveland for my two appointments at the Cleveland Clinic on Wednesday. As I prepare for that appointment, I've been collecting papers from each of the doctors I've seen so far (a daunting task, to say the least!). Well, when the papers from my pulmonologist at the IU Med. Center arrived, along came the results from my stress test back in April and as I was reading them, I was surprised to learn that my maximum oxygen uptake was much much lower than it should have been. It went on to talk about that in more detail and how I have a high HR/VO2, and there might be an abnormality in my oxygen transport mechanism. Now, that really doesn't mean much of anything to me, but I know that none of my doctors in town have that piece of information, and it sure sounds important to me. I am hoping that it might be the missing link to solving this crazy mystery!
While we are there in Cleveland, we will be meeting up with our friends and small group leaders, Troy and Alicia. For those who are newer to this blog, Troy (27 years) is battling stage III colorectal cancer and he is having major surgery this Friday at the Cleveland Clinic. Surgeons will be removing all of his colon, several lymph nodes and possibly part of his liver (looked suspicious on the PET scan so they will examine it). Please join us in lifting this family up in prayer this week; pray for peace as they prepare, safe travels, a successful surgery, a smooth recovery, and that Alicia does not go into labor while they are there (8 months pregnant with their second son). If you are interested in sending them a card or a meal, let me know and I will get you their information.
As for the rest of our great family, Katie is back to school today and Ryan is already missing her. He, however, slept in until nearly 9AM, which was great! He will go back tomorrow, which can't come soon enough. His little body needs to run and play! Scott doesn't go back until next week, so we are still enjoying his time at home. He is taking 16 hours, all in his major, this semester in an attempt to get done as quickly as possible. I'm confident that he will do fine, but he is nervous about the heavy course load.