Over a year, already? Wow.

Hi All! It has been almost a year since I've posted and over a year since my diagnosis with CIDP. You know, it's not that I don't have anything to say about CIDP, it's just that I don't want to bore anyone with it. Nobody wants to hear(read) about someone's daily trials all the time...that would just get depressing (for you AND me).

So, I took some time off. In that time, though, I've had some treatments that have done well with me and others that went over like broccoli at a kid's birthday party. I still get the IVIG every week. I want to thank anyone that donates plasma, as that is where my medicine comes from. It is very expensive, so I'm definitely thankful for insurance, as well.

One treatment that my neurologist is trying is the use of immune - suppressants. For those that don't know, those drugs knock down your immune system. In my case, it is to prevent my immune system from attacking, well...me. The first drug he tried was one called Imuran. I did feel better for a while, but it started making me really tired because it decreased my hemoglobin (the part of the blood that carries oxygen). Since that didn't work, he's trying another known as Cellcept. So far, so good. He just upped the dose, so we'll see if my body can hack it! LOL!

Something fortunate happened to me that many people may have seen as a bad thing... I lost my job. It was very difficult at first, as I wasn't sure what I was going to do with myself! But, it has given me time to heal without all the stress I was under before. As you probably know, stress is VERY bad for the nerves! I'll be back to work, soon, but hopefully not as much stress! :)

Wow. It has really helped me to be able to blog like this to all of you. I guess I didn't realize how therapeutic it is for me to do this. I guess the Lord has made a way for me to get things off my chest and I just need to use it. He has been far better to me, lately, than I have been to Him. I don't deserve His blessings, but I thank Him for them, all the same.

I hope this finds all of you happy and healthy!

- Aaron

Symptom Shift

Hey…I’m back. Yeah, yeah. I know it’s been a while since I’ve blogged. But, you see, I have this thing people call a “life,” and I was busy living mine. LOL! But, I’m back, and I’d like to share what’s been happening with me and my body’s unwelcome cohabitant, CIDP.

Many of my sensory symptoms have really let up, lately. Could be due to staying on a strict gabapentin regimen, or it could just be the natural progression/regression of the disease. It’s one of those things that I’m not sure if the change in symptoms is a good thing or a bad thing. Anyone from the outside, looking in, would say that it’s a good thing. But I’ve had a trade-off. My weakness seems to be getting worse. So, that’s something that the doc is going to have to wrap his brain around and let me know what he thinks. I don’t go back to him until March, but I’ll probably end up calling his office just to update him and see what he wants me to do.

I am trying to still exercise, when I can. Nothing major. Like most know, I was doing P90X (and doing it well, I might add) prior to getting sick. I am doing nothing even CLOSE to the warm up in P90X. I did, like, two games on Kinect Sports and I was ready for a nap. But, I did it. My lack of coordination has me looking like the Scarecrow from the Wizard of Oz (no brainless jokes, thank you). But, I did it. I have gotten to the point that I will push myself as hard as I can. I used to try and conserve energy and try not to get too worn out in order to make it to the end of the day. Forget that. I am doing what I can each and every day. Every minute of every day. Otherwise, my body is going to close up shop. As an instructor, I ask my students, “How do we tell our bodies that we want them to do something?” The answer, “We do it.”

If we want our lungs to work better, we walk, run or do some sort of cardiovascular exercise. If we want our muscles to get bigger, we lift weights that challenge them. If we want our nerves to work better, we do things that make our bodies conduct the nerve signals. So, if I want my body to get “better,” I need to do things that tell my body that I WANT it to get better. Sitting around on the couch and not doing anything is no way to get that message to my body. Sure, it gets frustrating sometimes. There are times when I shake really bad, and it makes it difficult to do much of anything and I HAVE to rest. Okay, CIDP…you win THIS round. But we’re gonna go ‘round again.

I would like to end this by asking for prayers for many of my friends and family. Whereas, I am dealing with a chronic disease, it is not threatening to end my life, nor has it stopped me from being able to work or spend quality time with my family. But, I have friends and family members who are suffering, right now. They are dealing with heart and lung disease, cancer, and others have recently passed away. Whatever prayers you may have said for me, say for those in my family who are ill. I have felt the hand of the Lord in my life, I know He watches over me. And I know much of that has come from the prayers of my friends and family. What a wonderful God we are serving! With all of the trials in life, none are so bad as to negate the blessings He has bestowed. That the One who hung the moon and the sun, makes the seas to rise and fall, put the stars in the sky and pushes that small blade of grass through six inches of concrete…He loves and takes care of me.

I do hope that this finds you all safe and warm during this bitterly cold winter. Please, stay safe and enjoy the time to get holed up with your families!