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

Struggles

Two things I am struggling with lately...

1. Complete and utter exhaustion. I am talking about the kind of exhaustion that is unlike anything I've ever experienced. I know tired. Tired is a part of my life. I work full time, have 3 young kids and a crazy schedule. Tired is part of it. I am not tired. I am not sleepy. I am the kind of exhausted that makes you sick to your stomach. The kind that makes your limbs feel too heavy to move or your head feel like it weighs 50 pounds. This exhaustion has led into major mommy guilt. Now I am guilty of having this mommy guilt way before I got sick. I put too much pressure on myself to be the perfect mom, and I never reach that goal. But this guilt is different. I feel like I have a certain amount of energy to use throughout the day. I end up spending it on everyone else's kids instead of my own. I feel bad that I come home so exhausted that I can't function. This is not the kind of mom I want my kids to remember. This is also something hard for my younger ones to understand which makes it harder.

2. The word "can't." I hate this word. This word has never been allowed in my classroom, my gym, my home, or in any huddle. This word is weak and debilitating. I despise this word. However, this word keeps popping up in my every day life activities and I feel like it is eating at my core. I have never been the type to think I can't do anything. Even at 36 years old I believed I could still take those high school and college girls on the bball court. There are few physical activities that would scare me away from trying and you could bet your life that whatever it was that I was doing I was going to try and be the fastest, strongest or best at it. That is until January. For the first time in my life I CAN'T do things. My body just won't let me. Things that use to seem so easy seem almost impossible. I have never felt more unlike myself in all of my life.

So here is where the term "a new normal" comes into play. I am having to learn a new normal for me. I am having to learn limitations and new expectations. I am not sure when or if I will ever be like me again. It's an uneasy feeling when you lose a part of yourself, especially when you have no control over it. I am a huge believer in positive thinking. I believe positive things happen to positive thinkers. I have tried so hard over the past few months to stay as positive as I can. Then there are days where I just feel beat down. It's hard not understanding your own body. To not know how you will react to simple movements. I mean teaching movement is my job!!!! 

So here I am, 16 weeks since diagnoses and I am still struggling. But I am also still living, still getting stronger, still here. I am thankful for how far I have come and how much I've improved. The things I have overcome help me remember where I started.