Saturday, February 2, 2013


Well, if you've read any of my blog, you know that I am a Christian...and I try, although not as well lately, to live with my illness in a positive way because I trust God. Well-- with the amount of sick I was over the holiday season, going back to school, dealing with all my crazy stuff, starting my thesis, being in a study, and trying to juggle doctor's appointments with my school schedule to miss as little school as possible it is easy (sadly) to loose track of how awesome God is and how much he has you in His hand at all times. Anyways, people keep telling me to have hope, to pray harder and I will be healed, to get over it and do stuff and it will all go away (p.s. I think for someone who is chronically ill, I freaking do a lot). Let me tell ya what, it won't. The illnesses I have are chronic. Let me give you the definition of chronic: persistently recurring for a long time or constantly recurring. This means it is NEVER going away, until I die. So please, if you are a person who does this, stop telling me about the latest greatest cure for my illness that doctors don't even know much about, so therefore you really don't know how to heal it. But don't worry, God does. Here is the cure for my illness. H.O.P.E.
Most people think of the definition of hope as "a feeling of expectation and desire for a certain thing to happen." That seems like a fitting definition for a person with a chronic illness. Like the expectation and desire they have is for their illness to end. But as a Christian, my definition of hope is a little different. To me H.O.P.E. means Hold On Pain Ends. I saw this on a meme on Pinterest one day and it really struck me. As a Christian, those of us with struggles (which is really all of us, let's be serious) believe the ultimate healing (physically, mentally, emotionally, or spiritually) is when we have ended our earthly life and are worshiping at the feet of Jesus in heaven. This is when my pain will end, and I am fervently praying for and waiting for this day (but am not rushing it along by any means). Because when I die, I will be healed. I will be running marathons, high jumping, teaching, standing up longer than 30 minutes without wanting to pass out, etc. Jesus will have given me the ultimate healing, my H.O.P.E. for all these years will have been answered. But until then, I got a whole lot of crap to deal with and it helps to have a positive attitude about it...which is what I've been trying to do for the past 4 days.
So let me fill you in on some of the crap, while I'm here and try to do it sort of positively...although this is one of my outlets so it may not be all positive. The holiday sickness stomach stuff still isn't resolved. That doc got fired, big time. I am still waiting to get a referral to IU Med for a new GI doc who will hopefully actually run tests with food in my stomach, since the problems come when food is in my body, not when it's empty from food. My stupid ANS system has been way off again. My heart rate and BP had been super high and acting naughty. Like 140 beats per minute just standing up. My cardiologist was trying to be nice and not have me miss a day of school so he was trying to fix me over the phone. He prescribed me a new med. Well the new med tanked my BP and my heart rate so now I'm off of it and I'm waiting for my appointment that I will have to miss school for at the end of February to figure out next steps. I'm currently on 2 different heart meds 3 times a day. I should be somewhat stabilized. In addition, my pain levels have been super high as well. My joints are killing me. I'm still not able to put pressure on my feet first thing in the morning. Each joint in my toes and my fingers is in extreme pain. My wrists, my knees, and my ankles are in a lot of distress as well. My tailbone hurts all the time, and on and on. I see the super rheumy in March, but I'm thinking about emailing him sooner than that to kind of get his brain going before I get there.
Classes this semester are really interesting and so are clinicals so far, so school is going pretty decent right now. Minus the amount of work there is and how tired it makes me. I have also started my thesis, I'm about 1/3 of the way done with my literature review. I'm trying to get my first 3 chapters done by March 1st so I can apply for a grant to get some money so I can maybe pay my participants at least a small incentive. It is really turning out to be pretty interesting. I also found out that a pain management doctor that's here in town is trying to do a study on the same thing, so maybe we can share resources. It's also coincidentally the same pain doctor that my rheumy keeps trying to get me to go that may be interesting. If she believes diet can help alleviate symptoms, it may be a pain doc I might actually wanna try out.
As far as the study goes, I have done all of the pre testing stuff. I start the actual study this weekend. It runs for 8 weeks. It is going to be a long 8 weeks I have a feeling. I was placed in the resistance training only group. This means that I am working out two times a week. I am doing 4 different exercises with 3 reps of 10 times each and 1 rep of 12 times on all 4 exercises. The study director said it's going to hurt really bad at first, but should get better over time. Unfortunately, I don't have the time to be laying around not being able to walk or move my arms at first because my muscles are like jello and in pain. Anyways, I'm hoping it helps, and I'm hoping he gets good data for my suffering :)
So that should be it for now. The only thing I know that can get me through is to remember H.O.P.E. and it will all be ok. :)