Hard Decision

Last week I have made one of the hardest decisions of my life. It is official and I will not be returning to coaching next year. I absolutely LOVE coaching. I have loved learning about volleyball and I have especially loved coaching basketball. I love watching my players fall in love with the game like I did at their age. I never thought I would say this but I love middle school aged kids! They are so influential and being able to coach this age has been a blessing. The kinds of relationships you have with your players is something I have cherished and will be the thing I miss the most. However, the long hours and stress of it all has taken a toll on my body. I think I have done pretty well this year but I feel as though I am making the best decision for myself and my family. It is not fair to my own kids for me to come home each evening and not have enough left in me to give them what they need. After the long days of school and practice I am physically spent. Being a mom is my number one priority and I want to be able to do that every day.
I am not sure what is in my future for next year. I do have some anxiety about the unknowns in our lives right now. I know I want to continue to teach and work with kids. As exhausting as that can be some days I know this is my calling, I am praying that God will continue to calm my heart and guide me in the right direction.

 For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. Jeremiah 29:11-13

Year 1

Today is exactly one year since I was diagnosed with Guillian Barre. I have had several people ask me if I am glad that 2014 is over, and in a way yes I am. I don't want to say it was the worst year of my life, but it was definitely the hardest year of my life. As I reflect back on this past year there are many lessons that I have learned. I have learned a lot about myself, the people around me, and most importantly God.

Lesson #1: You are WAY stronger than you think you are.
I have always felt like I was a pretty strong person, but I think we all can get to a breaking point both emotionally and physically at some point. I got to those breaking points several times over the past year. I felt sorry for myself and threw little pity parties, but I got over them. What else do you do? Life continues. No matter what hand you are delt in life you still live it. I still had a job to go to, kids to take care, friends and family to hang out with. You live. You get to a point where it really is mind over matter. You believe you can move forward and you do. Yes, I have had my set backs over the past year and yes there are days when I feel like there is never going to be a light at the end of the tunnel but you just keep going. I give myself pep talks all the time and tell myself "you can do this, you are way stronger that you think you are." It works.

Lesson #2: People are good.
I have seen how good people can be over this last year. When something like this happens you kind of expect your close friends and family to come to your rescue and take care of things, and mine did, but so did sooooooooo many more! We didn't cook a meal for 2 months. People took care of my kids, offered to clean my house, sent cards, money, surprises for my kids, the list goes on and on. People prayed for my family and emailed and called. Some of these people I had never met in my life. They just wanted us to know they were thinking about us. People are good.

Lesson #3: I married way above me.
I could not have done all of this if it wasn't for Rory. That poor man had to take on more things in the last year than anyone should ever have to. He became both Mom and Dad. He worried, he didn't sleep, he sat in my infusions for 7 hours, and he never complained. I thank God for this man daily. I don't know how I was lucky enough to marry someone so amazing. I definitely married up.

Lesson #4: God is good.
We hear this saying all the time, but we usually hear it when something great has happened to people. But I'm here to tell you that God is good all the time, even the hard times. In fact I have never felt closer to God as I have in this past year. When you get knocked down the only place to look is up. God has taught me so much throughout this experience. Not just the lessons I have listed above, but many, many more. My lesson is this. I know a God who gives hope to the hopeless. I know a God who loves the unlovable. I know a God who comforts the sorrowful. And I know a God who has planted this same power within me. My lesson is that I have seen the good in people that God has showed me and my hope is that I may live the kind of life that He would be proud of. A life that loves the unlovable, gives hope to the hopeless, and comforts the sorrowful.

Thank you to everyone who has supported my family over the last year. We seriously couldn't have done it without you and it means more than you will ever know.

This Sucks!

The biggest trouble I ever got into in school was saying the words "this sucks" in class. Coach Truss can probably remember. I hated math, still do, and he would sit us in order of our test grade. Of course I was terrible at taking tests and make it a math test, well let's just say I never moved off the front row. After serveral weeks of this humiliation I announced to him and the rest of the class that "this sucks." Worst trouble of my life. So, to this day I very rarely say those worlds...until today. 

 I now have something I hate worse than math tests. Usually when I post on this blog I am positive and for the most part I try to have that outlook about my illness. But today has been a hard day. Today has SUCKED. I haven't really posted much on days when I feel like this and I need to. I need people to see that I'm not always positive. People comment all the time about me being courageous or inspiring. I feel extremely uncomfortable with words like that being said about me. I don't feel courageous or inspiring at all. I feel like I'm doing what anyone else would be doing if they were in my shoes. People don't see days like today where I'm upset, and angry, and feeling sorry for myself. I had a rough weekend and long story short it was a bad reaction to my IVIG on Friday. Since each time I get an infusion it is from a different donor, then you never know how you'll react. Good to know now that it's been 11 months on it! 

So on days like today I cry. I question myself, I worry that others are questioning me and my abilities, and yes I feel sorry for myself. I feel like a bad mom, worse than most days, and I pray for Rory who always listens to me and does ALWAYS stay positive. Days like today suck. The end. 

The BIG Check Up

Today was a pretty big doctors appointment for me. It was my first check up with the neurologist since we cut my treatments in half this summer. It was the appointment where we were going to see how to move forward from here on out. I had a feeling that things were not going to go how I wished they would and I was right...
I still have no reflexes in my hands or feet, but I can't remember the last time I did so that was nothing new. I have, however, lost some strength in my hands and legs. I knew I was feeling weaker since school started and the tests today proved it. With CIDP my symptoms increase when I am sick or just tired from doing more than usual. Since school started I have been doing A LOT MORE than usual. I haven't coached since getting sick so I was anxious to see how my body would respond. I have been happy with how I am handling it so far. Yes I am exhausted but I'm functional and that is a good thing.
Since I am losing strength my neurologist decided to bump me back up to full treatments. In his words "these treatments suck. They are super expensive, time consuming, and they work." I totally understood what he was saying. They do work and because of that I will probably be on them for life. He did negotiate with me and instead of going every 3 weeks I get to go every 4 weeks now so that helps. I am disappointed. I wanted to be done but on Friday at my last treatment I was there until 8:00pm. I was the last patient they had so I got the chance to talk to my infusion nurse for a while. I asked her how many people she has seen with CIDP that have gotten off of IVIG for good. She said in 10 years she has seen 3 and 2 of them took themselves off because it didn't work. I realized pretty quickly that this was something I better prepare myself for.
If these treatments keep me functioning and out of a wheelchair then I will not complain. I remember how sick I was in January. If these treatments keep me from getting like that again then I will pay the price every time, I will sit (or nap) for 6-7 hours, and I will thank God that these treatments do work for me.

It's someone else's turn...

These last 7 months have been the hardest months of my life. It seems that as soon as things start to look up for me that I get kicked right back down. So not only have I been dealing with the CIDP and all of the things that go along with it, but two weeks ago I got a kidney stone, yes two weeks ago. If you have ever had one you know how painful they are. Those little tiny boogers can bring you to your knees in pain. I don't wish this kind of pain on anyone. At my 3rd ER visit (I don't do emergency rooms so this tells you how bad it was) they finally decided to remove the stone. So I stayed in the hospital last night and had surgery to remove it. The dr placed a stent and I will have it removed in 4 days. If you've ever had a stent you know that it now feels like I am peeing razor blades all day. It's a terrible feeling. 

So just another thing to add to the list of medical issues since January. When doctors ask me my medical history I actually get a little embarrased because it's so crazy it seems made up. When you really hear out loud what has been going on its hard to believe. The ER doctor yesterday listened to all that I've endured these last 7 months. His response was "you know you should act like a real ass but your actually pretty pleasant to be around." I took that as a compliment and of course Rory was out of the room and didn't get to hear that. I know there are days when he would disagree. There are days when I am very hard to be around. Days when it's hard to be pleasant. Days where I just want to lay in bed and sleep so I don't have to deal with anything. Rory has been great through all of this. I couldn't do it without him. We've had our share of hardships in 2014. The amount of doctors I've seen this summer and the amount of drugs I'm on is ridiculous. Enough is enough. It's someone else's turn. We need a break. 

I can relate

We took the kids to the Ross Perot museum last week. It was an awesome place but the kid's favorite area was the sports museum. Shocking I know. They have this 2 lane track that is approximately 30 yards long. There is a huge screen that spans the entire length of the track that allows you to race famous athletes but also things like a cheetah or a T Rex. My kids LOVED this and could've spent all day racing each other and imaginary dinosaurs. 

While we were there a kid and his grandad decide to race. His grandad is wearing a button up shirt and kahki pants but is wearing his tennis shoes. I turn to my brother and say how awesome it is that this older man is going to race. In those few seconds before they take off I start to think about how I wish I could race my kids but can't right now. I start to envy this 80 year old man for the physical abilities that he has over me. My brother turns to me and says "this isn't going to end well." He was right. About 5 steps into the race the older man loses his balance and falls face first. We all stood there shocked. He layed on the track for a while unable to get up. Other people came to his aid and it wasn't until the man next to me jumped the rails to help him that I realized that I wasn't doing anything to help. I was frozen. As they helped the older man up from the track he turns and says "I guess I'm not as young as I thought I was." I instantly tear up. Yes it was very sad that he fell, but what made me so sad was that I knew how he felt. I knew that he probably got on that starting line thinking it was just a fun race. Something his grandson would always remember. I don't think he thought he was going to win but I don't think he thought it was going to be a challenge just to run 5 steps. I know that feeling. There are days when I'm shocked at how much harder things are for me. I know what it's like to feel old. I'm not old by any means but my body feels that way. It also made me sad because I've always seen myself as the grandma that will be shooting hoops or playing dodgeball with my grandkids. Right now I can't even do that with my own kids. I don't want this to sound like a pity party. I've come a long way since January and I'm not planning on slowing down. I still plan on being that grandma but there was something about that moment on the track that struck a nerve with me. I couldn't stop thinking about this man and how embarrased and disappointed he probably was with himself. I couldn't stop thinking how I wish I would've talked to him. Told him how I want to be that kind of grandparent one day, even if I do fall. Because we all fall sometimes don't we?

Rest assured, God is interested in you, even when you have fallen.

Psalm 145:14, "The LORD uphold all that fall, and raiseth up all those that be bowed down."

Treatment Days

Treatment days are always interesting days. This lab is similar to chemo labs you might have seen before. Several recliners in a big room with people hooked up to some sort of liquid. In my infusion lab there are 8 chairs. I have them ranked from the best spot to the worst spot. The best spot being the chair in its own little corner away from everyone else. There is no window so it's dark while you sleep. I love this chair and I feel like I'm in my own little hole. The worst chair is the one in the back corner of the room next to the bathroom wall. All day you listen to everyone potty and flush. It's gross. Today I am in chair 3 out of 8. Not bad. 

There are two nurses that work in this lab. They are here all day every day. No lunch break. No conference or break time. They are pretty awesome ladies. I have dubbed them good nurse and bad nurse. Bad nurse is the sweetest little thing I've ever met. She is one of those older ladies that calls everyone sweetie, beautiful, doll, etc. She is probably the nicest nurse I have ever met, however she cannot put an IV in to save her life. At my first treatment she forgot to take a clip off of my IV. While twisting and turning the IV, that is already in my arm, to try and get this clip off, she kept shoving the needle further into my vein. I passed out. Rory sat there and watched all of the color leave my face and my eyes roll to the back of my head. At first I thought I passed out because I was so sick at the time. I've come to learn that she has a hard time with almost everyone's IV. I come here every 3 weeks so I am on the same schedule as other people. There are two younger men (young being 40s around here) who give bad nurse a hard time every time she botches an IV. So for the first 30 minutes I'm here my anxiety is pretty high. First because I want a good chair and second because I want good nurse. Good nurse knows how scared I am of bad nurse. She usually jumps up to come do my IV each time I am here. I love good nurse. 

My favorite part about my 6-8 hour days in this lab are the characters that join me. I am by far the youngest person here. A majority of the people have MS or lupus. I have only met one other person who was diagnosed with the same thing as me. I love to watch people. I don't talk much while I am here but I've learned a lot just from observing. Some of my favorite characters include the lady who brings her entire sewing machine with her. I love to watch the quilts she creates throughout the day. There is also an older man who watches movies on his laptop. He wears headphones so he can't hear himself when he talks to the movies, and he does this a lot! Last time, just as I was about to fall asleep he yells "marijuana." It startled the whole room. Then there is the short lady. I swear this lady is 4'5". She must have the chairs numbered as well because she seems to always get my favorite spots before me. She sleeps a lot, which I can appreciate, but she snores. I mean this little lady can snore! I don't know how someone that small can snore that loud. I am always embarrassed for her. It reminds me of the feeling I get at karaoke bars. I literally break out in hives because I'm so embarrassed for the terrible singers on stage. I would die if I knew I was snoring like that in public. But the people who really annoy me are the loud talkers. I just want to sleep. I am not asking for silence but come on. My teacher instincts come out every time and I want to tell them to use their indoor voices, and sometimes I want to ask the nurse to give them more Benadryl. And these loud talkers just want to talk. To anyone. About anything. I feel sorry for them because maybe they long for human interaction. Maybe this is the only time they get out. Or maybe they are hard of hearing. Either way I wear headphones and it doesn't drowned out their conversations. It's annoying.

So after the IV is in and I take my 2 Benadryl I sleep. And sleep. I actually enjoy treatment days. I relax. As any mom of young kids knows, nap times are valuable things and relaxing is almost nonexistent. Now I've come to appreciate my days off here in this lab with my characters. It's treatment days that remind me of how lucky I am. I look around the room at other people who cannot walk well or have lost motor functions. There is no cure for what they have. There is a chance for me to recover to my old self. It's hard for me to feel sorry for myself on treatment days.

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18