The Geek in Me

I will admit that I am in LOVE with Microsoft Excel! I LOVE LOVE LOVE the fact that it collects, compiles, and displays data for me because I live in a data-driven world. So, after I've read some books about POTS and CFS, I decided to try what most of them suggested- a daily journal of symptoms. Now, last time I did it, I wrote down my symptoms (chest pain, shortness of breath, etc.). It was pretty much the same every day, but I could start to see if there was a pattern of "good" days. I didn't realize that my good days were just "by chance" and that the "over-doing" it that I did on those days lasted long afterward.

So, Sunday, while the boys were at my parents and I was fighting off an awful headache and recovering from an awful nights sleep, I made a daily journal of events and fatigue. On one column, I have the time and events/situation and beside it, I rate on a scale of 1-10 (1 being the lowest and 10 being the highest) of how I'm feeling at that point in time. I have had a few sevens and many more ones, but Sunday, my average for the day was 4.46. Monday, a day that dragged on and I thought would NEVER end- 3.85. Today, after a rude encounter and a snippy email made for a VERY long day of what felt like wasted efforts- 3.27. Notice a trend here??? I'm thinking that working full-time is hard on my healing, but right now, I love my job so much and don't know how else to manage the load.

I am noting this because: 1) I AM a geek! and 2) I want to look back on this and realize how low I did feel. I know that I'm going to get better. I'd like to see improvement in the next few weeks or months. But for now, I have a data/number that represents my fatigue level for the day and it gives me something to strive for the next day. Trying to pace myself and stay on track to getting healthy. Thanks for the prayers.

Still Chuggin Along

Please forgive me. I am falling behind on posting, but that is actually a good thing because the days I don't post tend to be days I don't have any nice things to say, so consider yourself blessed to have not heard my complaining the past few days. Today, my boys will come home and I will wake up with Shawn home (he gets him VERY VERY VERY late tonight).

I had a lot of ups and downs yesterday. For the most part, things went well until I started to dwell on the fact that I'm not the mom I used to be, I'm not the housekeeper I used to be, I am definitely not the wife and friend I used to be, so I had a few break-downs as I mourned who I used to be. Then I put myself together and went to my friend's party. I had a great time there socializing and being with some of my closest friends. It was nice to not have to chase my children around and have them creating chaos. But, after I left the party I started to feel lonely and sad that so many people asked about where my boys were and I admitted that they were at my mom's. The truth is, she is a terrific grandma. The truth is, I'm not the best mom right now. The truth- I am working on getting better, but I can't quite handle my 3 rambunctous boys by myself for very long. And. . . . I'm not one to ask for help or even accept it very easily.

Last night, I heard my refridgerator groan as the ice maker worked. I heard the locusts screaming outside my window. I heard the creaks and cracks of the settling of my house and the whirring of the washing machine. Sleep evaded me until I finally couldn't take it anymore. I read an entire book (200 page book, not a picture book!). And, I slept awful. I had intense dreams of someone breaking in to harm me and then had awful "realistic" dreams of harm being done to my family. I stayed "asleep" although I should have completely woken up and spent that time praying that the Lord provide rest and relaxation and calming thoughts.

Today, I'm working on pacing. I don't know how it works, but it is a key element in my well-being. So far, I've flunked it. When I feel good, I want to zip around and do a lot of things, but then I crash later. Somethings are worth crashing for, but generally, I need to maintain the turtle speed of sure and steady winning the race. I wanted to make it to church this morning, but I knew that the extra socialization, even in all good intentions would make me again realize how inadequate I am. So, I'm setting the timer today and trying to maintain a work/rest routine, which seems to be working ok. Of course, I won't know until tomorrow if I truly stored up the energy I needed.

Here are a few pictures of my boys at the cardboard boat races at the Milford lake a few weekends ago. Shawn is wanting to pursue this project for next year. My only problem is wanting to make sure my boys can SWIM.

Grand

My husband:

is in New York. . . . hiking, touring, kayaking, staying up late chatting, and sun-burning with my baby brother. Tonight (shhhhh!) they are at a drive-in movie together! :) haha

I miss him. But I have to say I'm kinda proud of how GRAND I've been surviving on my own since he's been gone. But really, you can't completely say I am on my own because I have the best friends possible! Some friends are bringing meals, baking cookies, helping with the boys, and giving me a much needed break. For the first time in a LONG time, I went home from school yesterday to prevent a "burnout" and put my family first! It helped me to not resent the job I love and get the rest I needed to provide the best care for my boys last evening.

Tonight, I took the boys BY MYSELF (can I get a YEAH!!!!) to the Riley High School scrimage. It was something that Shawn had planned a long time ago with the boys and they had really been looking forward to it, so I made the plans and went despite how I felt. It did go pretty well.

This was about the second or third day of school when it was raining:

I have been reading soooo much lately. I have so much to share and so hopeful of an outlook on the things I'm dealing with. I don't have a clear mind right now, so I'm not even going to try to write a summary of them, but just know that I'll get the "report" on here and it will be awesome. I am getting a good perspective on life in general and am so very thankful for my Savior and how He divinely leads my life.

For tonight, its homework time while Toy Story is babysitting and Malachi is running amok! The boys are going to grandma's tomorrow for some farm time and I'm planning a REST day and getting some light housework and homework done. I'm also looking forward to some fun with friends tomorrow as well. For now, though, if you ask how I'm doing, I'd have to answer, "Grand!" Its a beautiful night with the cooler weather, even though my boys are screaming and fighting, I can still feel the memories so freshly of my longing to hug them while I was away from them for so long. While I try to keep up with my boys and their needs, I am thankful for the strength I'm building and the endurance I have to meet their needs. I still love cuddling with Malachi at night while he drifts off to sleep. Shawn says I spoil him, but the nice thing about now is . . . .Shawn's not here to hound me about it! :)

My Boys

My boys

frustrate me,


make me laugh,



make me want to pull my hair out,


but most of all, want to keep trying to get better.


My boys (including Shawn) are my inspiration.



Shawn made it safely to New York and so far Toy Story 2 is entertaining the little piranahs! We tried to go over to Michele's house for a new workout, but Malachi would not have it. He was too wired up, so, I've resorted to looking forward to my Bible study and just being thankful I can be vertical today.


My boys are silly,


goofy,


downright, purposefully ornery,


and sometimes rude.

But I still love them and cherish my moments with them.

Rough

Notice Malachi's hair cut??? No, he didn't do it. I did.

He went to sleep with gum and somehow it ended up all over his hair and pillow. Thank God it ended up there rather than in his throat.

He likes his Grandpa Dave's (Shawn's dad) tractor.

Today was rough, but yet it was so great. My neighbor has part of this week of so she came over this morning at 6:30am to help me get the boys out the door. She's already awake at that time and has the whole rest of the day to spend by herself, so she wanted to know if it would help me not feel as fatigued if I let her help with them. She was WONDERFUL. We are so very blessed by the friends and neighbors we have. Michele came over tonight to check how my strength training is going and to give me some new exercises to work on. I love it, but today was an overwhelming day.

Shawn leaves tomorrow morning for NY for VACATION! I am at a point in my illness that I can't really function with the boys by myself very long without just losing it and needing to rest. Thankfully, my mom is taking them Friday through the weekend, but I am already dreading being away from them! I hate how slow the healing process is and get so discouraged. Satan tries to get in my heart and make me cry, thinking of all that I am unable to do and be. However, I will rise above. I will help others. I will serve others. I will be the best me I can, broken or not.

Loganism: Logan asked me today how God made the world be dark. I told him that the Earth spins around and when the sun is not on our side, than it is dark. So, pretty soon Logan exclaimed, "Oh, so God untwists the Earth to make it light again!?"

Bring it on Monday!

Some Mondays, I just want to hide. I am not completely relaxed from the weekend and I'd like the week to pass by without noticing me.

But then, I tip my head up and see that people care and love me.

And, so I feel strength to tell my Monday's, "Bring it on!"

It was a rough day. I won't lie.

I cried.
I laughed.
I stressed.
I yelled.
I name-called.
I hugged.
I loved.
I hurt.
I prayed.
I heard.
Praise God that gives us storms so we can have rainbows in our life. I don't have any idea why I am afflicted like I have been and I'd never wish this pain and fatigue on anyone, but there is a reason. Its not in vain. I must hold on to the only hope I have sometimes. Because I can't even imagine facing this difficulty without Him.

These boys decided to dress themselves for church yesterday. As I say many times, sometimes there are just battles I choose not to fight. Sure, I used to worry about "what other people thought" but now I am just thankful that my boys can express their creative side and have such nurturing people in their lives that are just thankful we're at church, despite what we are dressed like.

And, I think the tie and bow-tie brought a few chuckles or smiles to our church friends' faces.






The boys love our new floors. Try not to notice that the baseboard isn't back up yet.

Today was a Monday.
I've got to stop dreading Mondays and start embracing them.
I have to take little steps to get to big places.
I am a great mom, despite the amount of take-out meals I serve my family.
I've realized how strong I can be in my physical therapy/strength training. I know its helping.
God is good. Plain and simple.
I'm S   L    O    W    I     N     G my life down.
Moment by moment I will choose to seek grace, patience, hope and humility.
Thank you for the prayers.

School

We all survived the 1st week of school!!!!

Logan survived Kindergarten and just loves being at school. Zachary enjoys his 2nd/3rd grade and I'm proud of myself to make it through a whole 5-day work week! I can't wait to start seeing kids and making plans to help them meet their academic goals.

You might not see me on here much more (or less frequent) I should state. I started 2 of my graduate classes on Wednesday so am up to my ears in educational research and primary reading assessments. It may sound like a lot of stress, but I really do enjoy learning and continuing my education. It's almost a little sad to think about it coming to an end so soon already, but it will be nice to not have those deadlines looming over me during the school year.

I have a stack of books about a foot high (probably higher) on my bedside table. Amazon and the public library had plenty of resources about CFS/ME and I'm working on reading through them and finding inspiration. One thing that I read last night that kinda was an "aha" moment was that there are people (like me) that try to rush the healing. I felt like if I stayed positive it would just automatically get better. A positive attitude IS very important, but it doesn't undo the biological and physical factors that are happening to my body right now. And for me to ignore those for too long and try to "push through them" more than I should is more detrimental than helpful. Most of the books are saying that it will be 2-3 years at least for me to regain any sort of what my lifestyle was prior to falling ill. My doctor actually adviced that it might not happen much at all because the CFS is a secondary symptom of the POTS.

One huge prayer answer is the fact that I will NOT be traveling to Minnesota next week for my follow-up. Shawn called that dr today and they said that they didn't realize how far away we lived and so the doctor will just mail the report to us and if we have questions, we can call them anytime. That's such a wonderful service- the nurses are always so helpful and prompt about getting us answers. I LOVE the Mayo clinic. I will have a cardiology EP appt. in Wichita next Friday (when Shawn is gone also) and so I am going to see about possibly canceling or rescheduling that. The cardiologist at Mayo said I would need to stay consulting with them but he really didn't have much to say that would help. So, I kinda am not hopeful about re-checking with my local cardiologist because I feel he'd be less informed than the other doctor.

Okay, again, the post has once again drifted into me, me, me. On a positive note, I had enough endurance to read several books to my boys tonight. Shawn has had "the talk" with our boys about chasing girls. Zach proclaimed to us this week that he is for certain of the girl he will marry even though he will have to wait for so long. We tried talking sense into him, but can already see the heartbreak.

Logan checked out his first library book at school. I told him that our rule is that it must be in the book bag or in his hands. Then I asked (to see if he understood), "Logan, if the book is not in your hands, where does it need to be?" He replied, "in my lap!"

Malachi has learned what McDonald's is and he called it "Mine-Don-Golds Nuggets". It cracks us up to hear how he says it.

We're looking forward to a restful and homework-filled weekend. :)

No Pictures

I'm sorry.

Blog posts without pictures should be outlawed.

I mean- sometimes people ONLY scroll down through the pictures! (But some actually read the articles.)

I'm sorry.

This blog isn't about me and the ailments that plaque me.

This blog is about my family- the wonderful husband, 3 beautiful boys and fun family we have.

I'm sorry.

Lately I haven't had energy to do my hair, let alone bribe my children to take cutsey pictures.

Last night I fell on some hard gravel (like which gravel wouldn't be hard). My fat tush and elbow took the brunt of it, but my ego hurts. Its supposed to be getting better. ]

Last night was a crying night . . . . after bible study.

This morning went better with the boys. They saw my ouchies and had mercy on me- Praise God!

Malachi got an impromptu haircut at about 6:30am as he was stuck to Shawn's pillow . . . by a piece of gum!

I gave Logan a free book about volcanos that Scholastic sent me and he exclaimed loudly, "Mommy, I like this book very much about volcanos because I can use it when I ever see one."

Zachary proclaimed last night that he knew the girl he wants to marry and he knows he can wait years for this love to develop. Its cute and heart-breaking all at once.

I've been praying to find a ride (or a riding companion) on my trip next week and God has faithfully answered those prayers, however, giving me a decision to make as to who to take/go with. I think my dad will take me since he's used to the long drives (from being a custom harvester). I am kinda bummed though that I don't get to have girl chat for a few hours though with my friend that was so kind to volunteer.

Shawn leaves for New York next Wednesday through Saturday. I'm not even going to try to put on a mask that shows I'm doing ok. I am excited for him to go because he deserves this, but I am seriously questioning my functioning with my kids for that long.

I'm sorry.

Some days. . . are better than this. . . some days. . . .aren't. I can only hope and trust that God will provide the strength I need.

Pictures of the boys would look cute in this post. Their smiles melt my heart.They keep me motivated.

Please continue to pray as we decide the next leg of my healing journey. The Mayo clinic had offered a more extensive rehab and therapy, and we declined thinking about how much we just wanted to get home. However, with how many days in a row I'm feeling like its "too much" I am not sure what they will say on Wednesday and I wonder if that choice will have to be made.

Energy

As a "follower" of Love & Logic discipline and parenting, I have had a lot of discussions with my children about "ENERGY". If they misbehave, I lose energy, thus I can't play with them for as long as they'd prefer me to or I won't have energy to drive to the shopping center for the toy they might have been saving money for. My boys really understand energy usage and how to manage mom & dad's energy levels so they can have a good time with us.

Well, lately, as you've noticed, I've been lacking energy- seriously and physically- which is of no blame of my children. This article, called "The Spoon Theory" talks about life with an invisible illness. While I certainly do not have Lupus, which is what the story refers to, but it does help explain how limited I have been with my energy and activity. I have to carefully choose what I want to use my energy for the day on and sometimes I have to do things that I didn't choose, so lose energy on things beyond my control. I'm learning more about CFS and actually bought several books from Amazon to help me stay motivated toward continuing on the healing journey.

Today started off ROUGH. It felt more like a Monday than a Tuesday. My alarm clock went off WAY before I was ready for it to. I hit the snooze button a few too many times, making me have to scramble around (not a good plan as it uses WAY more energy). I woke the boys up later than and Zachary and Logan were fighting and arguing like crazy everytime I turned my back. By the time I locked and closed the door to drag my body through the rain to the van, I knew it was just one of those days. They told us we'd have these days, where the urge to give into the fatigue and pain of the fatigue would be overwhelming, but I thought I'd been doing ok.

So, I explained to Zachary and Logan (who by then were beating each other up in the van) that mommy lost energy this morning having to constantly rescue them from each other. I expended so much more energy because of their bickering and pestering each other and it really wore me out. They usually are so good about being self-sufficient and getting themselves ready. I told them that I wouldn't have much energy tonight after I got home for them since I spent most of it this morning on their behavior.

My dear friends sent supper home with me yesterday and it was truly a God-send! It touched my heart and really eased the load on Shawn for a little bit. I am hoping to build up the stamina again to stand long enough to cook meals AND play with my family AND multi-task like I used to, but for now, I have to choose only 1 activity to use my energy on and sometimes its not easy making that choice.

Today is rough. . . . . tomorrow might be. . . . this is just my life right now and doesn't define the person I am and can be.

My energy is precious to me. . . its valued and a priority to give to the ones I love. . . I appreciate when others notice that and try to help me preserve it.

Education is helpful, motivating, and enlightening. . . .it also is empowering and addictive. . . through knowledge, is power, and through power, can come healing.

I'm getting there. . . . its the same as the tortoise and the hare. . . I'm not one for patience, but know the end of the story. . . God will provide healing. . . in His time.

I'll get there . .. even after days like this.

1st Day of School

My boys started school today! Logan is FINALLY a kindergartner. No tears from us. He was as excited as could be. This is a day he's been waiting for for a LONG time. This morning, I told him that he'd already made friends at his back-to-school night. He starts giggling and said, "Silly mommy! I can't make people! Only God can make people!" (He thought I meant that he LITERALLY made friends.) haha. I'm hoping that humor and innocence stays with him and he's delightful for his teacher.

All grown up:

A picture with aunt Courtney, aka- assistant principal:

Zachary with his 2nd/3rd grade teacher. He's super excited (although its not cool to admit that in public). I can't believe I have a baby in 2nd grade!!!!! I'm starting to feel a bit older. Ugh!

The End of the Pumpkin

A few days before we had to leave for Minnesota, Shawn picked the pumpkin. He didn't do it on purpose, of course, because it still had quite a bit of growing left to do, but alas, it snapped as he was trying to move it, so, he rolled it to the front of our house and we got a picture of it this morning. (that was a HUGE run-on sentence). :) Church was our ONE event today. I made it through it, but didn't make it through anything else today. :( Its ok though. One step at a time. I can't run a marathon today, but I'll get there. Determination!

Tomorrow is the start of kindergarten for Logan and 2nd/3rd grade for Zachary. Logan hasn't been "normal" all day today. He keeps begging to take a nap, which is VERY unlike him! And, actually, at 7pm when I went to check on all the boys, he was already zonked out. That could mean he's going to wake up at 2am ready to go, but I sure hope not. I have had the most horrible brain fog lately as I've tried to remember what things I sent to school already and what I was needing to remember. This is the time of year that things fly fast and I can't keep up with it this year. URGH! I need to print out some positive affirmations that get me through these days.

This is the picture I get when I tell Malachi to look:

So, he looked- like a coyote on a pumpkin!

Today, I met with my neighbor who is FABULOUS and enthusiastic about exercising and being fit. She made a program for me to start working my muscles and gain strength and endurance. I'm sooooo excited, but she said she'd make sure to tell Shawn not to let me work them too much all at once. I guess muscles need about 48 hours between workouts to build strength and not wear them down, so I will do upper body training MWF and lower body training TRS. Sunday will be my day of rest and possibly starting to take walks around town.

Crash!

Today. . . I crashed.

Today. . . Malachi crashed.

Today, was good, but not great. It was restful and exhausting. Today was filled with family time, and solitude. Today, is Day 4 of change that I'm still trying to get used to and understand. I think I caught up on sleep, but I missed out on precious time with my babies. Tonight, though, we went to the Leonardville parade and festival. It was the ONE thing for us to do for the day. Eventually, I'm hoping to do multiple outings in a day, but for now, I can get through the ONE, I'm doing good.

Free icies or sno-cones were nice in this refreshing 90 degree weather.

Logan was flirting away. Lord help him as he starts kindergarten!

They were anxious for the parade to start. They were prepared to fight/battle for the candy.

Malachi tripped on the flip-flops and bit the asphalt. He got a big goose-egg on his head and scrapes on his elbows and knees. This is SEVERAL minutes after the incident when he was finally ok for me to put him down again.

They loved the monster truck. And, I just realized, Malachi is once again pointing with the wrong finger.

Tomorrow, we have early church, which we actually prefer because its not as hard fighting the boys during their lunch craving time. Also, it seems to help our day get moving faster instead of kinda being lazy for most of the morning and then having church and then not much of an afternoon after lunch and resting time. I'm thinking that church will be our ONE outing tomorrow, but we'll see how it goes. I'm praying that things go great and maybe we can make a much needed trip to town for the rest of our groceries. I'm learning to try to not let my symptoms run my day, but its HARD. I've also noticed that its incredibly hard to be cheerful and calm with my boys when I'm incredily exhausted and painfully fatigued. I'm on my last nerve and they battle for my attention, making it worse. So, that's a goal for this week- to not let my sour attitude (when I'm hurting and tired) not affect my family or people around me.