Logan Stylin' Again

I had to get a quick picture of Logan last night. Please excuse our patchy grass behind him. Suzie, well. . . . entertains herself while we're gone during the day. Darn dog.

Malachi really wanted to be part of the picture.

That didn't last long before they started fighting.

 Logan has ice in his hands because he pinched his arm pretty bad in the swing while they were laying on their stomaches and swinging. He thought the ice was to eat rather than put on his ouchie.

Today, I stayed home from school. I was zonked out most of the mornings. Mornings are the hardest, which is weird for me because I'm usually a very active morning person. I think I waited too long between IV treatments and on top of the dehydrating effects of travling, I think it just really kicked me. I also had some major stress yesterday that was just the climax of it all. When the tears came, they just all came, and really didn't stop for awhile. I was upset about a certain issue, but there was so much more that was making me angry and frustrated. I hate not being the teacher I used to be. I hate not being the mom I used to be. I hate feeling like I'm inadequate and in survival mode. It'd been awhile since I really cried it all out, and I think yesterday by the time I got home and reflected on the many things, I realized that I was ready to try climbing back up out of this depressing hole.

The IV treatment went a little rocky yesterday. I had NO idea what I was doing. Shawn gave the best IV's I've ever had! They hurt, but not near as bad as when some of the nurses had done them. I also didn't realize that their was such a complicated way to just switch the 2 bags of fluid, so I messed up, thus requiring another IV site. So, I learned my lesson. The fluid went in SOOOO much faster than it had at the hospital with the pump. Unfortunately, insurance is being picky and not covering the costs (for right now), but its still way cheaper to pay the $70+ every couple of days than to pay the $400+ hospital stay plus the supplies. So, for now, we'll continue to do it at home and in our moments of strength will try to convince the insurance company that they are better off saving their money.

Today, I'm regaining strength. I do feel better this afternoon after a very restful morning. I am not as shaky, dizzy or lightheaded. I'm not ready to start combatting the laundry loads, but just to be up and about after how I felt yesterday, is progress.

I'm hoping for a restful and relaxing weekend of catching up with my boys. Monday, I have a minor procedure scheduled and am just a tad nervous about it, but knowing that God has me in his hands. I just HATE stitches and all that gunk that goes with healing. As you know, I'm NOT a patient person! Ah. . . .

Multiple use lamp

I have to say that in the many years we've owned this lamp I never have imagined it being used as an IV pole. Sure was handy today though. It was a VERY rough day with heart rates up to 174 for part of it. Returning to work was made much more difficult than I'd expected but somehow I'm really praying for the strength to get through.
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Last Night in Chicago

Dear kiddos, Look at all the fun stuff I get to bring home to share with you and my students:

I've had so much fun learning and discussing reading. Right now, though all the ideas are just floating around and jumbled as I've got so much to think about. Its kinda all a mess, just like my bed is in the picture above. I can't wait to organize it all and make use of it.

Last night, Courtney and I went on a walk to buy some new shoes. She found some. I saved my money. Something about me just hates to shop for myself. Maybe someday. . . . We saw this cute little "castle" on our way to the shopping mall. Remember, mommy doesn't have the best camera, so use your imagination for the cropping and skill editing.

Here are some more beautiful tulips.

I hate having my picture taken, but here I am, missing you guys.

Courtney and I went out to eat last night at Rockit. Its a sports bar. We learned a lot about hockey, since I guess that's the new big thing here in Chicago. Here is a picture with our cousin Lance. He lives only a few blocks from the hotel we were staying at. Kinda neat to know someone here.

This morning, we listened to a speech by former vice-president, Al Gore. He talked about climate change and how the world will be different if we don't start taking good care of it.

He also wrote a few books, even for kids.

The pictures are kinda blurry because I was a little shaky and we couldn't use a flash. That would have distracted him.

Finally, in one of my sessions this afternoon, I got to meet and listen to Mary Pope Osborne and her sister Natalie. It was so neat to hear how the Magic Tree House books came to be. She is a really neat, down-to-earth author.

Here she is again, signing a special book for you! :)

Tomorrow evening (late), I will be home. I'm exhausted today. But that's about all the complaining I'll do for now. I miss you bunches and can't wait to see you again. Be good! :)

Greetings Again From Chicago

Hi Boys! Its mommy again! :) I miss you bunches! I uploaded some pictures so far. They aren't the best, obviously because they don't have you in them, but I thought you'd like to see what I've been up to. Here is my nice hotel room that I'm sharing with Aunt Courtney. Shhh. . . . . she didn't want to be in the picture.

The pool here is historic I guess- one that an Olympian used to practice in. Its very neat. I just got one picture because I didn't want the kids in there to wonder why I was taking a picture of them! :) haha

Here is another (awful) picture of me last night before Courtney and I went out for supper. I'm extremely tired, but feel very honored to be on this trip. I'm learning a lot about being a better teacher.

Here is another picture of the beautiful tulips in town. They are ALL OVER around where we're staying. Its so beautiful to see them.

Last night, when we were walking to supper, we saw the Garmin store. Your (actually my) cousin, Curtis, works for Garmin, so I kinda felt a little reminesent last night when we were walking. I miss Kansas and I miss you guys so much!

This is where we ate last night:

I guess you can't go to Chicago without having the pizza. It was a LONG wait but definitely worth it. The cheese literally melted in my mouth! I have NEVER had such awesome pizza!!!! YUMMY!!!!! (PS, remember, mommy doesn't like her picture taken. She always looks so corny!) :)

Aunt Courtney looks much better with her pizza.

This morning, the Queen of Jordan spoke to us. She was very passionate about world literacy. I couldn't get over how young, beautiful and powerful she is. She is a muslim and wrote a book about differences. I'd like to see the book when it comes out. (It was published today, but will be out later on.)

Finally, here are some of the sights from where I've been: (This is the McCormick Center where the conference is located.)

Here is a view of the skyscrapers from the conference center.

Here is a beautiful fountain by the center. I took the picture from the bus, so its quality is not great at all.

Today has been overall exhausting. I feel like I'm worn out beyond recovery. I still need to keep going, but I don't have you boys to keep me motivated and up to spend time with. Tonight, Courtney and I might be going out on the town with our cousin. I'll have to let you know if that happens since right now I'm going to rest for a little while to see if I can get my headache to go away. I miss you tons. Hugs & kisses & be good for daddy!

Hi From Chicago

Hi boys! I miss you so much! I got some pictures off my camera and found the ones I took of you the morning I left. You all are so stinkin cute! I know that yesterday you were beating each other up, and despite some bloody noses and bruises, I hope you are still breathing when I get home! I have enjoyed talking to you when I call home and although I can't make out everything you're saying to me, I do know that Daddy is keep you happy and busy. Thank you for being good boys for him.

As I told you, I had my first EVER official airplane ride (the other ride didn't technically count)! I flew out of Kansas City on Southwest. The flight attendants were funny and humorous and kept me less nervous. It was fun to watch people in the airport and wonder what their stories were and where they might be traveling to or from. It was rainy and dreary, which really hasn't changed since I got to Chicago. Its cold and icky out, almost like January and February are for us in Kansas. I miss the sun very much. I guess the plane ride was much more turbulent because of the rain/wind/storm, but I didn't think it was too bad. In fact, I thought it was a blast, except for the pressure in my ears that made them feel like they were going to BURST!!!

I HATE HATE HATE pictures of myself, but I did have Aunt Courtney take one of my 1st plane ride. I hope sometime soon I can take you boys on a plane ride. I think you'd love it too and we'd have fun traveling and exploring.

I had a window seat so I could look outside and see the ground below. Again, what a neat experience. I'd seen it before when I flew over Phoenix at night, but it was still pretty cool to be up in the clouds.

Another first for me was a ride in a taxi! WOW! I couldn't believe how crazy that ride was! It was also hard to understand our driver because it seemed like he spoke a different language. We made it to our hotel safely though and that's whats most important. I guess the city of Chicago spent a LOT of money making the city beautiful with the tulips. They are so pretty. I wish I could take a picture to do the beauty justice.

I have so much to share with you and can't wait to see you again. Today was a good day for my health! My heart rate was LOW! It was amazing. My only regret about it was that I didn't get to spend this healthy day with you. There is a LOT of walking and a LOT of waiting. I can tell that I'll be tired by Wednesday evening, but I know that the only way I had such an awesome day was because of the faithful prayers of so many friends of ours.

My hotel is the InterContinental Chicago. It is VERY nice and cozy, but nothing like home sweet home. The IRA conferences is in the McCormick place, which is HUGE!!!!! Its so busy with people and such a LARGE building. There are supposed to be several thousand people here from all different countries. The Queen of Jordan is our keynote speaker tomorrow morning. It is such a privedge to get to be here. I hope I keep feeling healthy. Give the best to everyone in KS and be good. Hugs & love boys! :)

I Should Be. . . .

packing . . . but I'm blogging.

praying . . . but I'm worrying.

grateful for the days that are refreshing from the pain . . . but I'm greedy and want more days like that.

positive that today is a better day. . . but I'm throwing a pity party because of all I had to go through to get to this "better" place.

spending my last evening with my children and husband . . . but Shawn's on a walk with Malachi & Tarin while Zach and Logan are with my sister.

more hopeful . . . . but it's fading fast.

getting rest for the big trip tomorrow . . . but I'm trying to clean, out of the nervousness and fear that everything will fall apart without me.

aware that the world doesn't fall apart in my absense . . . but I'm anxious about what my absense will mean for my family.

excited . . . .but I'm scared.

praying . . . .

Lilacs

I love lilacs! They're the most beautiful and wonderful smell I know. I have a bouquet setting by my computer as I blog and am just mesmerized by the lovely smell. Of course, I have a stuffy nose, scratchy throat and popping ears, indicating a normal onset of a bit of a cold, but lilacs are still magnificient.

Today was rough. The clock definitely struck midnight and turned me back into a POTS patient. URGH! I missed a call from the Mayo clinic today. That was a little disappointing, but as we come to find out, our insurance is being a bugger and so my wonderful doctor will be getting some things in order for me to have an "official" referral SOON. I have an appointment tomorrow. The Midodrine is not working or as effective today. I hate how itchy it makes my scalp and how it makes me have chills more often. But, if it will slow my heart rate and give me energy like it did yesterday, than I will tolerate some trade-offs.

My kids are with Sabine tonight to go to Awanas and its a struggle to decide whether I should use this time to be part-way productive and clean/pack for my trip or if I should just go to bed and zonk out. Procrastination is usually not my thing, but with how exhausted I've been. . . . .

Please continue to pray.

Better Day

I started Midodrine yesterday after a bit of a hassle getting it. My doctor had not heard of the medicine, but he looked it up and checked it out with the rest of the meds I'm taking. I can't hardly remember all of them anymore! (Thank goodness for a handy dandy pill organizer!) The Midodrine is taken about 3 times a day and its fast-acting to bring my blood pressure up and slow my heart rate a little, pretty much completely counteract POTS symptoms. Its used kinda as a last resort in the treatment of POTS but I'm wondering why I hadn't tried it sooner. It does leave me feeling like I have a million ants crawling through my hair for about half and hour after I take it, but today was the first time in a LONG time that my heart rate had registered in the 70's on my monitor!!!!! I was SOOOO excited. And. . . . I could stand up without feeling like I was on a revolving turntable. I am still having temperature issues and digestion issues for sure, but just to have a little energy back was so nice. I need refreshing day like this every now and then to remind me that I can keep going on this journey.

We have had such support lately with church and school friends bringing us meals, helping out with the kids, and most of all supporting us with prayer. It is a comfort to have such people in our lives and I can only pray that when I am back on my feet that I can pass on the generosity that has been bestowed upon my family and I. I feel so humble. . . so indebted. . . . so grateful. . . . so out of words for the kindness that people have shown us. It does brighten my spirits and make me want to keep up the fight to find strength and resolution to this disease.

I will be going back to the doctor Thursday for a check-up and possibly IV treatment. I need to make sure I'm good and hydrated and ready to go on my trip to Chicago. The reading conference will be jam-packed with learning and exciting things. I've never flown on a plane, so I have a little bit of jitters setting in. I also don't like leaving my family because they keep me strong when I just want to fall apart. My sister will accompany me, but its just not the same. When I told my boys tonight that I would be gone for 5 days, they couldn't believe it. I doubt they'll miss me a fraction of how much I'm already starting to miss them. POTS has stolen so much of my time away from them. Here's praying for another good day tomorrow. The clock has struck "midnight" and I'm turning back into a fatigued person, but I sure enjoyed my strength while I had it today! God is good!

Sunday Catching Up

I really need to get some new pictures taken. I really need to do a LOT of things, but. . . . I need to stop making excuses. :) Ah. . . . Malachi just got home and he's already in time-out. I love the terrific 2's. He's been on a screaming kick where he just loves to scream bloody murder and make us come running thinking that he's hurt or his brothers are picking on him. The problem is, he can only cry wolf so many times.

A few days ago, I was cuddles up on the couch, resting and he decided to be my blankie-sharer. :)

Yesterday during the garage sale, Zachary learned how to climb our tree in the front yard. Oh, joy!

And, finally, Logan and Taige went to the Riley school carnival with Aunt Jarin. They had a blast. I WISH I would have had energy to walk around and take all 3 of my boys, but not this year.

Hopefully this is the only time Logan will be in a police car with the lights flashing! :)

And, finally, Malachi is starting to copy our neighbor and pop wheelies on his little bike. It won't be long before I'm really having heart problems because he'll be on a big bike. I'm praying that we're able to hold that off as long as possible.

Please keep praying that I hear something this week about an appointment in Ohio. Right now, its about the only hope I can hang onto some days. Shawn took us out to eat today after church (since the boys needed haircuts) and I love Carlos O'Kelly's but it was quite an experience. I haven't been there for awhile, but I had to call ahead to make sure there wasn't a wait time because I can't stand up long to wait, so we were just not going to go if there was a long wait. Then, when we got to our table, I started to get really hot/cold at the same time because we were by a window. I can't regulate my temperature as well as I used to, so was starting to get miserable, but Zach & Logan were acting good, so we were making the best of it. Then, I ate about 4 bites of my quesadilla before it reached my stomach and I could just feel the blood rushing there as it left my head and made me DIZZY and have almost an instant headache. What should and could have been an enjoyable meal turned miserable real fast and I couldn't get out of there fast enough. Have you ever tried to walk when your feet have no feeling and feel like jello??? :) I'm sure people wondered if I'd had one too many margaritas! :) haha.

This morning at church, Zachary smiled at me and I realized he has yet another adult tooth growing in behind his baby teeth on the bottom. URGH! I can't believe I missed it AGAIN! WOW! We had a good time with him last night since he spent his time with us instead of going with Jarin to the carnival. He was grounded actually, but we just treated him like he needed some extra attention from us.

I'm trying to spend all 5 days at work this week. I'm hopeful it will go great. Saturday, I will be leaving to fly to Chicago for 5 days. PLEASE PLEASE PLEASE pray that I can handle attending this conference and that I can make the most of it, despite my fatigue and condition. I'm going to try my hardest to press through and endure as much as I can until I physically cannot keep standing. I think there will be a lot of sitting time during the sessions so I'm hopeful that will help me to regroup. I'm soooo excited to go and just wish I was a bit healthier. I'll be discussing this with my doctor this week as I prepare for the trip. Also, please pray for things to go smoothly here at home for Shawn. He's going to be juggling a lot more than he already has been (if that makes any sense). I do help out a little bit, so the 5 days I'm gone will be fun for him . . . .  :)

Aye matey!

Logan and Taige enjoyed the local PTO school carnival with their aunt Jarin.
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Roller Coasters

I love roller coasters. I've loved the thrill of breezing through the wind and spinning around. Its invigorating and thrilling and ends in a mad rush of adreneline. Unfortunately, I've been on a roller coaster ride for the past 2-3 days. If I close my eyes, I about fall over because my head is spinning so fast. My heart is racing no less than 100 bpm and my body is shaken as it would be at the end of the ride. However, the ride's not over. Today is again a rough day. I've been praying to be off this tortuous ride for so long now that I wonder when it will finally come to a stop.

Thankfully, though, I'm not alone. God is my safety-harness and stronghold on my life. He is guarding me through my physical ailments and comforting me. Through the nauseating sickness and dizzy-spells, when the devil tries to make my mind succomb to his negativity, God holds me in His hands and I feel comfort knowing He desires for me to be well and I will get there eventually. My poor family is on the ride with me, a ride they never chose to be on. Shawn literally hates roller coasters! But, he has the amazing ability to endure my ups and downs with this disease and love me unconditionally. My boys have stepped up and assumed roles they might now have had before. They are wonderful and so caring. It pains me to have them on this miserable ride with me.

Hope is on the way though. I'm praying hard that I will have an appointment set up SOON with Dr. Grubb. I know that this specific moment may be painful, difficult, and turbulent, but I know it is temporary. My entire life is temporary. I know that when I'm feeling at the lowest point or the worst day, I know that it can only get better. So, that is my hope. I know what the truth is by reading the Bible and although my feelings tell me one thing, the truth tells me that God cares and He will help me be strong.

Please continue to pray.

Still waiting....

I'm patiently waiting for a better day. Thanks for the continued prayers.
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Choices

Currently, I've been spending a lot of time . . . . resting. I started a "symptom journal" so I could track my good days and bad days. I hope its helpful and I hope I can focus on the "good" parts of my day. I appreciate the prayers. Right now, I wish I could say that things had greatly improved, but I am taking it little by little. I did make it to church today- dizzy and lightheaded, but still nonetheless there.

I've read a bunch of great devotional books lately, but the one I currently decided to pick up and read (it'd been sitting in my pile for awhile now of books I should get to) is "8 Choices That Will Change a Woman's Life". The excerpt to it is here: Based on the wisdom of the book of James, this book offers simple guidelines for life's complex choices. You can choose to have a life that is happy, blessed and pleasing to God. These qualities are within your grasp, but you will have choices to make. It's up to you. This insightful book will give you the tools you need to make choices that will change your life--for good!

The first chapter is about the choice of "pain". I never knew that was a choice before, so I enjoyed reading about it and understanding that although I physically am in pain, I have a joy that exceeds that because I have a heavenly Father that will heal me. We have a choice to RESIST pain or to USE it. Its not a choice to have it or not. Because would that even really be a choice? James says (based on the Phillips version)- "When the way is rough, your patience has a chance to grow. So let it grow, and don't try to squirm out of your problems. For when your patience is finally in full bloom, then you will be ready for anything, strong in character, ful and complete." (James 1:3-4)

I have mentioned MANY times on here that I very much lack the virtue of patience. After reading this first chapter, I wondered if God is telling me to slow down, and work in His time rather than MY time. I want to be healed NOW today, yesterday, but NOW. He says, "there is a reason and someday you will understand, but for now, have patience and faith." So, I'm trying to learn to be patient. Honestly, I am so worn out, I almost have no choice but to be patient because I feel too exhausted to do anything but that. But, I am not so sure that patience=rest. So, that is an issue I will be further exploring and meditating in God's word to understand what it is that I should do and what path is right for me at this point in my journey toward healing.

Basically, our doctors are kinda at the end of their ropes as well with this disease and not sure what to do. Thankfully, they have the bed-side, wise manner to tell us that and be open to other sources of information. We mentioned the Mayo clinic but it was doubtful that they would have many other treatment options. So, we are leaning toward the Cleveland Clinic or Vanderbilt Medical. I need to do more research and exploring on both of those, and also try to understand what would be best and how much more energy to exert on finding a "cure" or better symptom management. From the tons of articles (some even med articles that were practically in latin!) it is discouraging that there would be much better of a prognosis especially with the category of POTS that I have and the severity of it already. Part of me wants to accept the 'truths' as I find time after time that this is a dehabilitating and very disabling disease, but another part of me is still a bit in denial and trying to reach out in hope that I could possibly have been misdiagnosed or a rare case that does in fact find resolution in my ailments. I'm praying and I'm trusting and I have hope. Jesus died for my sins and for my healing.

Here are a few of the last pictures from Easter at my mom & dad's house:
The 5 cousins:

Malachi was in a BAD mood!


Who wants candy???? :)


Not sure who was pulling on Taige! :)



Thank you for the continued prayers and support. It means so much to me and my family right now.