More Results. . .More Diagnosis

One thing that is nice about the Mayo clinic is that it is like being in a hospital AND art museum. I'm not a huge artsy person, but this has some art that I do appreciate and can understand. This is a waterfall. I know you can't really tell, but where the darker stones are is where the water flows down. You can sit by it and just close your eyes and pretend the world it perfect. It really is soothing!

I wish I could play around more with my camera to take pictures that would be more realistic, but this is like walking down a hallway of choosing paint colors. Here you see pink and blue, and further down the hallway are other colors the further you walk.

These paintings of the animals really reminded me of the boys and all the trips we've taken with them to the zoo.

This was on the way to the chaplains office. It really should be no surprise, but they have over 30 chaplains here! Wow! :) The one we talked to was named Kate and she was so fabulous and kind.

This town is FULL of ducks!!! I am not sure what the deal is or what it means, but there are over 3 of these statue ducks with different colors, just around the Mayo clinic.

The county fair was in town last week. Its bigger than our state fair. We didn't go because I just did NOT feel like walking around in the "heat". Everyone is complaining about how hot it is up here. While Shawn is getting texts updates alerting us to severe heat indexes in KS, we are enjoying weather in the 80s. Here are some statues that I guess they used at the fair. Again, they reminded me of the boys because Manhattan has a huge cow/bull like one of these and Malachi screams with excitement when he sees it.

This is a Fleet Farm. I guess they are all the rage up in these parts. We just saw a ginormous building in bright orange and had to see what it was all about. Its close to our hotel, so when we try to get out for fresh air, it was one thing that we "toured". The picture is not accurate to how enormous the building really is! It is like Bass Pro meets Wal-Mart, except for the prices. They aren't like Wal-Mart's. But, it has so much hunting, camping, sports gear, plus has practical things like food, toys, clothes, AND has auto service including a gas station! I texted my brother a picture of a kayak displayed in the store. He made a few phone calls and now we're trying to figure out how to travel home with an over 12 foot kayak! Never underestimate the mini-van- that's our motto! :)

Today, we (I) had some "consult" appointments as well as an evalutation for fibromyalgia and chronic fatigue syndrome. The first consult with cardiovascular diseases went "well". My exercise/stress test last week was below average. (That's hard for a perfectionest/over-achiever like me to hear.) My heart rate had some abnormalities but overall, they couldn't figure out why that would be and would wait until other departments made their "diagnosises". Basically, I need to build more muscle strength in my legs (which I've been trying to do) so that I can get enough blood pumping to my heart. He (the doctor) said that basically the high fluid, high salt, and minimum exercise perscription was going to give me the most benefit. The IV treatments are not preferred, but he said that will be ok as we've been using them- on extremely difficult days. He said more than likely we would end up "seeing" the cardiovascular dept. again, but Shawn and I weren't sure what that meant. Basically, my heart is going haywire in addition to the POTS and CFS.

My evaluation today for CFS and fibromyalgia confirmed the diagnosis of CFS. Shawn told me this morning that if I was not diagnosed with either of these than we would not have to spend our anniversary in a class on management of this and could probably get my other appointments moved up so that we could get home sooner. I was anxious, and probably got my hopes up too much. The nurse and nurse practitioner were sooo very nice and informative. They did a very thorough evaluation, asking me everything under the sun. We came to the conclusion that pregnancies were difficult on my body and after the birth of Malachi when I got extremely sick from anemia, it was a huge "stressor" on my Central Nervous System and that kinda set the CFS into a downward spiral. I never really "bounced back" like I should have from that overwhelming fatigue from when he was an infant and struggled with anemia that just wouldn't help me get better and build my strength up. I'm not a biology major, nor do I understand a lot about the body systems, but the doctor said something about my autonomic nervous system being "abnormal" and "damaged". My central nervous system is on over-drive and that is why I have CFS. I dreaded this diagnosis because I hate the thought of "fatigue" being seen as "lazy". I'm NOT a lazy person at all and I'm scared of the label that most people would place on people with CFS. The way the doctor explained it to me this morning made a lot of sense and they were very positive about helping me find ways to improve my quality of life.

Tomorrow, on Shawn and my 8th wedding anniversary, we will be in an 8 hour class (with different nurses and doctors- some of which we met today) and they will teach us how to best manage fibromyalgia and CFS. I did not know that in 70% of cases, these 2 "diseases" or whatever overlap and they are actually on the same "disease" spectrum. I however, do not have the pain associated with fibromyalgia, so am mainly on the CFS side of the spectrum.

I'm happy to have answers. I'm glad there is hope in healing. I'm glad I am a Christian and know the amazing healing that is promised to me.

I'm suffering from immense homesickness, but am thankful that my boys are with someone who loves them. There is a possibility that I will get to come home EARLY!!! I almost hesitate to type that because I don't want to get my hopes up. But. . . . we might be able to move our appointments up to end around 5pm Wednesday, which would put us home around 1-2am Thursday. I'm praying that is a reality, but not counting on it.

Thank you so very much for the prayers!

Mall of America

Since I begrudgingly have to remain here for the weekend, Shawn talked me into taking a trip to the Mall of America just to "see" it. I was a little intimidated at the thought of it, praying that I'd have strength to walk around long enough and not need to rent a wheelchair. Well. . . .we made it!!!! I haven't been to a mall for awhile- resorting to mainly online shopping since I am kinda slow walking lately and I need to sit down often. It usually isn't worth a trip! And, with us needing food and clothing for this trip, I was bound to not really buy much unless it was a SUPER deal. Well, we ate lunch there after walking around all 3 levels. I did buy the boys a keychain each I guess, but that's all. It was a good experience, but I don't think its worth all the hype it gets. I wasn't overly impressed, but maybe if I was more of a shopper, it would be a more delightful trip.

We didn't eat here, but I do usually enjoy this place. I didn't really check my camera settings or play with them. Its really dumb to have a nice camera and always leave it on "AUTO" but until I have time to learn more, that's what I have to do I guess. So, these pictures aren't the best quality that they could be.

We really liked the Lego store. . . .and so did about a zillion other people and kids. It was soo jammed packed and of course there were a bunch of crabby people that were trying to get their kids to participate in pictures by all the Lego statues, but it just wasn't happening with the crowd. I took some pictures as we looked around. I wasn't too picky, but maybe if I was trying to get a child to look my direction AND smile, we'd have much different pictures! :)

The bike really reminded me of Malachi. I miss the boys.

I can't believe all the things that they make out of Legos!!!! I mean- WHOLY COW!!!

Here's the Nickolodean Amusement Park in the middle of the mall. Too bad I wasn't feeling better. I LOVE amusement parks. Shawn doesn't enjoy them so much.

I dared Shawn to go up by this shark. I needed a laugh with how exhausted I was today.

Today, I realized that my older 2 boys need their allergy shots. They last had them July 30th and have to have them in 7-10 days apart or they have to start all over (which means buying another $200 vial of the injections). We usually always give them their shots in the hospital parking lot and have so far never had to use the Epi-Pen or go into the hospital. Well, the boys just finished their last vials and we sent the information in, so there should be packages with the vials waiting in the mail for us. Well, I just realized today that we won't be home in time for giving the boys their shots on time. My brother finally figured out how to get the mailbox open (we have to have a PO box) and so he picked up some of my mail, but won't be around during the open hours to stop in and pick up the vials of medicine packages. (Does this make sense?) Brady will be working all day Monday and Tuesday, so won't get back to Riley in time to pick up the vials. I also am not sure if they will arrive in time or how/who wil give the boys their shots. I could call the dr office and have my mom take them in, but that puts her out of her way 1 hour driving to get them to the dr office. I'm stressing and I'm trying to remember that God will get us through this, but its these little things that I think about that seem like HUGE mountains for me. It does, after all, involve my precious babies.

Depending on how I feel tomorrow, we've decided to use it to go and get most of the school supplies for the boys so I don't have to keep worrying about getting all that together when I return. When I talked to Logan today he had no idea how close kindergarten is for him. He said, "1 day". I miss them.

I really hate that I'm not going to be back for my inservices (yes, I know that sounds odd) and I feel like I'm going to start the school year having little clue as to what's going on. Hopefully I'll get filled in accurately and promptly.

ok, finally, here is what is going on next week- both for you to know and pray about and for my record so I can remember and pray about:

Monday- health consult with cardiovascular diseases

consut with general medicine for fibromyalgia evaluation

consult with internal medicine for chronic fatigue

exercise therapist consult for PT

Tuesday- 8 hour clinic for Fibromyalgia and chronic Fatigue & POTS management (supposedly I get the schedule closer to the time and the Mayo clinic is HUGE on patient education, which I love)

Wednesday- Consult with Internal Medicine again for a Summary Visit

Thursday- Fibromyalgia and chronic fatigue clinic

wellness specialist, fitness & endurance coaching

AND RETURN HOME!!!!!!!!

I'm also supposed to have a follow-up visit with Neurology at the end of August, a day before Shawn flies to NY for his delayed vacation with my brother. I also have my cardiology follow-up in Wichita after Shawn leaves for NY.

Thank you for the prayers!!!! I'm off to bed for now.

Still Here

I'm still here. I'm a little better, emotionally, than I was yesterday. I'm not good when things go unplanned, but amazingly, we found a room at our same hotel (we'd been staying at) for a VERY reasonable rate and so will remain there until the end of this medical excursion.

My mom texted me a picture of my boys yesterday that totally made my day. And. . . it made me cry a bit more since I miss them so much. In discussion with my mom, I found out that my grandmother had fibromyalgia, so I wonder if it is hereditary and I'm praying that the tests come back negative for it. But, what may be, will be and I just have to learn to accept things a bit better.

Here is a picture of my friend Shayla. She is such a doll- always the most precious heart and caring soul. She is so refreshing to chat with.

See how beautiful she is and with a perfect smile and I look all goofy. I hate taking pictures of myself.

This was me last night. I'm hooked up to a 24 hour Holter heart rate monitor as well as a 24 hour blood pressure monitor. They really aren't that fashionable and for sure did not let me rest well last night.

Here is a silly picture of Shawn. He is the man! He walked into many hotels last night, begging for a room and some people were a little unkind to him. Bless his heart. He has shown me so much love through the "little" things he's done for me during this trip.

And he LOVES Chewy Chips Ahoy. Since we have a kitchen in our little apartment, we are able to keep snacks and even cook, if we felt like it.

We spoke to the chaplain today and she was sooo nice. I promised Shawn that I wouldn't cry, but when she asked what brought us here, I started babbling and then she asked about the boys and I pretty much lost it. I miss them, I miss the fact that I'm supposed to start my teaching job next week. I hate the circumstances.

I am currently waiting on my endocrinology test and then we're done until Monday. Monday thru Thursday we have consults all day long with different departments and doctors. I have a feeling I need to get some rest this weekend, so it isn't logical to drive back to KS. I hate feeling like a burden to people and I know my mom needs to get back to work, but we're trying to figure things out. The garden needs tending to it, so if you're reading this and live around me, PLEASE go help yourself to the tomatoes so they don't go to waste. Just drive down the alley and pluck as many as you'd like. PLEASE!!!! I'm also wondering how I'm going to scramble to get all the school supplies ready for my kids in time for them to start school when I return. This is Logan's first year for school and I don't want to mess it up. So, I have a lot of "worry" that I'm trying to let God lift off my heart.

We visited a Christian and Gift book store here. It is amazing! The prices are great too. I have plenty of reading for awhile. This weekend, we might take a drive to the Mall of America just to say we've been there. I'm not sure if I'll have energy for it, but I certainly want to try. I am getting close to needing a wheelchair, but I don't want to unless I absolutely need it. So, I'm going to wait until a doctor urges more, and just keep annoying Shawn with how slowly I'm getting around and how many times I need to stop to rest.

Please keep the prayers coming. The weather here is beautiful. The hotel is nice. The Mayo clinic is super. But, I miss home and my "normal" routines.

More Facts . . . In Case you Wondered. . .. And because I'm Bored

* There are many people here called "checkers". They are people that sit in the department WAITING and HOPING for an available appointment to come available. Sometimes they get appointments, sometimes they wait months!
* There is a convention in town. We're not part of it, but it sure ate up the cheaper hotels for staying at. Thus, we cannot find a hotel (with a Mayo clinic patient discount) for under $150.
* Supposedly Holter heart monitors do NOT work in cars. I'm assuming this includes mini-vans but they weren't that specific. So, I'm guess I can't leave the building for 24 hours????
* TMI- I have a special brown bag that I carry around to all the different appointments. It has special "liquid" that I have to collect for 24 hours. JOY JOY JOY. (Please don't ask if you are confused!) :)
* God does love me and there is a reason for this craziness. Someday I will know. Right now . . . .I'll just have to trust.
* There are too many Menards in this town and that is a dangerous place for Shawn to shop at.
* Shawn is currently calling hotels and making me laugh as he tries to make reservations. He has to do this because I would cry!
* I LOVE LOVE LOVE my husband. I couldn't have made this trip and this journey without him.
* Next week will be our 8th wedding anniversary. We are scheduled for a clinic that day on fibromyalgia and chronic fatigue management- 8 hour class. Hmmm . . . won't that make for a memorable anniversary. Wish we were redeeming our cruise instead.
* I'm bored in between my appointments and start thinking about my kids. . . .then I cry. . . . even though I thought I was out of tears. I miss them sooo much. They make me smile.
* Prayer is important. It is comforting. Please continue to pray. Thank you!

Halloween Yet?

Malachi woke up this morning with a 105 degree fever. He was limp and just hotter than hot. He cried when I held him or touched him anywhere and was just downright miserable. After the Motrin kicked in two hours later, he still had a 102 fever, so I called the dr. He suggested we come in. Of course, by the time we got there, Malachi was fine and dandy. He was a ball of energy and had NO fever. They ran some blood tests and the doctor inspected the rashes and said for sure it is something viral. Its a "classic textbook case". Oh how I wish I could hear those words at my doctors visits! Anyway, with how I've been feeling, I'm not real particular with how the boys dress themselves. Just as long as they know it will be hot and they need to dress accordingly. Well, the last couple pictures show what Logan and Malachi wore to the doctor's office this morning. It was so "comical" that the doctor had to take a picture of them on his bberry to show others. The doctor was checking Malachi's heart and ears and Logan leaned over, hugged him and said, "I love you!" He said, "Ah, thanks!" It was just cute. Logan's so sweet. And, to think of how he HATED doctors and offices for the longest time to now where he is where he loves his doctor. I'm so proud of how far he's come. Malachi had to get blood work, as I said, and he didn't flinch or cry at all! I couldn't believe the willpower of this child! He just looked at me in a calm way and let them prick around (they didn't get the vein on the first try). I was almost in tears because of how calm he was. It was precious. Of course, they put a band-aid on and then he said, "hurt" so we took it off so he didn't "hurt". :) We had lunch at the hospital so Shawn could buy us lunch and see the boys. Then, home for naps and off to VBS tonight and later on Bible study for me with smores! Yummy! :) I love Wednesday nights!

Medical Update

As I write this, we are currently in Missouri, on our long trek back to Oz. Today was my appointment with the cardiothoracic surgeon in St. Louis at the St. Louis children’s hospital. It has been a LONG, challenging day, but overall, good. I was a bit apprehensive as we traveled down to St. Louis. I had researched for this doctor online and he seemed like a very good doctor, besides being the closest one to us.

Shawn picked up a few of my medical records yesterday from my regular physician and I read through those on the way down to KC last night. On one of the records, I saw a different doctor while my doctor was on vacation. She noted the weight loss from my previous visit and suggested in the record that I had anorexia as well as pectus excavatum. She never said anything to me at all back during that visit, so it really made me wonder what gave her that impression and how she could so bluntly put that as a possible diagnosis on my permanent medical file! It was a blow to my self-esteem last night, even though it is something that is in the past. I just have worked so hard to overcome my eating disorder and have been “healed” for over 10 years now that seeing that was like a slap in the face. And then, I start going through the feelings of wishing I did have anorexia again because then I’d know how to “fix” it and I wouldn’t be traveling all over trying to find healing! But, Shawn is a good sounding board and in all logical sense, I’d never sincerely wish to have anorexia again, I just wish I didn’t have the ailments that I currently do.

As I said, the doctor that I went to see was researched to be a great doctor . . . and he was. He was very knowledgeable and kind. He was also very matter-of-fact and compassionate at the same time. I knew from this website where I found him (http://www.cardiothoracicsurgery.wustl.edu/PatientCare/PectusExcavatum.asp) that he would more than likely not want me to have the surgery to correct my pectus excavatum, which is sort of the reason that I wanted to go to him, but also he is one of the only doctors I could find that actually performs the surgery on adults. The website says, “Thus, most patients do not need or desire an operation after they have had a chance to talk over the implications of this condition.”

I knew what I was in for. I prayed for an answer. And God is giving me a decision to think about. The facts of today are- I do indeed have pectus excavatum, a mild case of it (but the measurements); my sternum IS pressing on my heart, especially when I am upright; we can’t be entirely certain that the PE is causing my tachycardia because of the pressure felt on my heart and it is NOT the cause of my POTS (which I was praying might be which would then definitely be cured with the surgery); and. . . .we are not certain that a surgery would be the “fix” to the problem at this time. The doctor said he would not disagree to do the surgery for me, but wanted me to understand how awful of a surgery it is for the little bit of benefit it might give. At this point, he cannot completely guarantee that the surgery would be life-altering in a good way. It is also a LONG process. It would probably be a year out after the surgery to even tell if it did any good or not.

Here’s our dilemma- I’m not getting any younger. The pain is not fun to deal with. I somehow stupidly did not elect for short-term disability through my work like I usually have done in the past. With my medical bills, we would need me to continue to work for now. However, by May of next year, we might be in a different place, the boys will be a little older to be able to be more independent and helpful and financially we could be at a better place to allow me the time off to heal.

For now, the decision has been made to do intense physical therapy and pain med injections (YUCK!) as well as take pain relievers. In about one month, we will follow-up with the doctor to discuss our decision about the surgery. He left it in our hands after he gave us the facts and details about it, and that scares me more than just having a doctor make the decision for me.

I’m continuing to pray continuously for healing. Today, I will admit that I got angry with God. We got to St. Louis very early and went to visit the arch. I was out of the car for about 15 minutes and as we were SLOWLY walking in the heat, I told Shawn I was not feeling well. I checked my heart rate and sure enough it was 174! As I watched the crowds of old and young healthy people walking toward the arch to visit, I got mad that I should be able to go on a “vacation” with my husband (without chasing boys) without getting “sick”. It is frustrating to have an invisible illness that is so disabling. If I can’t even do that with my husband, how will I take my kids on trips? But, reality sets in and I need to remind myself once again of how blessed I truly am to have such a wonderful husband, children, family and that things could indeed be much worse.

Well, we’re still traveling and I should get back to doing my homework, but just wanted to update about the appointment today. I’ll try to post more. I have a TON of pictures from the past few weeks with my new camera, but it seems like every evening I’ve been home, we’ve had awful storms, so I haven’t gotten them uploaded to the blog.

Here are a few older pictures (from my older camera and Zach's camera) from our trip to the Deanna Rose Farmstead:

Numbers Geek

I have to admit quite openly that I'm a NERD! I LOVE LOVE LOVE Excel. If you put in the correct formulas, it thinks for you and that's what I love. I can see things in graphs, tables, and with data to support my words. Today was a good day at school. I can't say it was the best, but by far, it wasn't awful. I had chest pain and was a little wobbly when walking (not sure why that is) but I made it through the day!!!!!

Upon arriving home though, I desparately needed to lay down for just a little bit. Well, Malachi would have none of that and proceeded to throw a major fit. I hated for him to want me so bad and for me to physically not be able to be there to comfort him. I held him for awhile in the recliner, but that was not restful enough for me and I really needed to lie down. So, I laid in bed, while he screamed beside the bedside, refusing to even come sit by me. So, here is the new stats that I put together that will go in my report for the Mayo clinic.

Summary of Symptoms

Please continue to pray for me- specifically that I can get rid of my brain fog long enough to have coherent thought and word processes to get my petition letter for the Mayo clinic written and sent. I have been putting it off because I just feel so unskilled and not as good at writing and spelling as I used to be and this is something I used to be awesome at, so I'm a little ashamed at how stupid I have become. I also need specific prayers that we can find resources to help Shawn with the boys when we're having evenings such as this one where we just need an extra comforting person for Malachi when he just can't have his mommy. Grandma was out in western KS so that was out of the question. We just need a better back-up plan for these types of situations. I haven't had to ask for help very often, but tonight, I called all my life-lines! :) We desparately need groceries, which is usually a weekend and an exhausting task. Shawn could go by himself, but I do enjoy going to get cooking ideas and to make sure we do have all the ingredients. And, we've usually handled the 3 boys just fine while shopping, but with how I feel, its just too overwhelming and its just something I have to get used to. I have been closer and closer to be passing out and am not wanting to get there.

I feel like I'm rambling, yet have no idea what I just typed. I'm THAT tired! Off to bed for now. Brady's been here to help out after my many SOS texts. For that, I'm truly grateful. Tomorrow, I have a to-do list that is a mile long. I ask that NO ONE stops by our house to see the destruction within from the frat house living. I'm so overwhelmed right now and until I get strength to find where that smell is coming from or where that other dirty shoe got thrown or why there are 3 pairs of underwear all over the front room. . . . .I'd prefer to not have visitors, but actually, if you want to see our REAL life, the one that we don't often hide behind (because we have no choice), come on over.

Thanks for the prayers. I'll stop rambling now. And, I'll work on getting some pictures of the boys for on here. . . . .hmmmmm .. . . .

Blood of Christ

Most of you are on Facebook, so you get to see my many Loganisms. Well, after we had communion one Sunday, Logan said, "I sure do love the blood of Christ!"

Well, last night we had some left over grape juice from the Monday inservice that I missed. I brought it home for the boys to have at supper time. Halfway through supper, Logan casually asked, "May I please have a refill on the blood of Christ?" Sometimes his funny moments can be taken so lightly yet with such a deep meaning too!

My baby brother, Rylans stopped by tonight to bring us some pizza for supper. I had a great day of feeling better since increasing my Midodrine and increasing my fluid intake, but am already worn out tonight, so will soon be hitting the sack. I still need to find the strength/time/motivation to get the referral/petition letter prepared for the Mayo clinic. There is SOOOO much I need to get done and it seems like things are scheduling up all over my summer alreay. :(

Fishing Tournament, Sand, and Comfort Buddies

This morning, Zachary and Shawn headed out for a Fishing Derby or tournament of some kind. It was for kids from ages 6-16. We're not really avid fishers, so they were mainly going for the quality time and the hopes of catching something. Well, they definitely got their quality time, through the coldness and chilly windyness of the morning!

At lunchtime, I took Logan and Malachi into Manhattan to meet up with Jarin & Brendan for the K-State baseball game. It was a relaxing day this afternoon because I got a nap and some rest. My house is in an awful mess, but having a happy family has trumped all for right now.

Here are some pictures from Shawn's phone from today.






The other night, Malachi learned the joy of burying yourself in the sand. Sorry some of the pictures are sideways.





Finally, last night was my 3rd IV fluid treatment at home. I got 2 bags this time since I was really feeling awful. I had a couple buddies to keep me company and comfort me. This is why we opted to do the treatments at home! The last one I did at the hospital took over 3 hours and was in a room shared with 3 other strangers! At home, it takes about an hour and I have the best company.