July 19, 2014

Let’s talk about my life for a moment….

So. I guess I should address the massive white elephant in the room… I will warn you, it’s gonna be real. Like real real.

Some of you already know that I’ve been diagnosed with MS. Some of you don’t. Some of you don’t even know me [yet or at all.] I don’t know what all you know about MS, I don’t even know much about it. But. I can tell you, the things I’m finding out aren’t the most encouraging.

I’m reading things that tell me that my quality of life shouldn’t decrease, and that most people can live their lives normally. Then the very next sentence tells me that I may lose the ability to walk, or I may develop severe cognitive impairment, all either gradually or extremely suddenly. [so then why am I even starting my masters now if this is what I have to look forward to?] Some articles tell me I’ll lose control of my bowels soon, and others tell me that it’ll make my life easier to just embrace the wheelchair or walker and be prepared to face depression and psychological changes. They all tell me that MS is an incredibly degenerative disease, that may be passed on to my [future] children. [this is great news for someone who’s still single…. …..] The National Multiple Sclerosis Society quotes on their Facebook, “Multiple Sclerosis stops people from moving. The National MS Society exists to make sure it doesn’t.” The levels of uncertainty surrounding this disease are extremely unsettling, especially when you’ve been yo-yo-ed for the last 10 months.

While I continue to fight this diagnosis, I can’t deny the things I feel changing in my body, no matter how hard I try to fight it. I ache. My arms and legs get way tired way fast. I read that the pain that comes along with MS is the actual demyelination of my nerves. That’s a “major” side effect. I do feel super exhausted a lot. Which. May seem normal given my schedule, but I push through it because I have to. Subsequently. It’s what started this hilariously awful tradition of my “pre-bed naps.” If you know me, you know I’m energized by people, so I fight through it to stay social, which perpetuates this. I can feel myself stumbling over words and half stuttering, but I do my best to cover it. It’s extremely frustrating to hear yourself say something wrong and not be able to stop it. Or to feel yourself stumbling over a word you know but can’t quite get out. I think that’s the hardest part. Not being in control over the things you know you can do but are watching yourself do wrong. That’s the hardest part. Being helpless. [and struggling to not be hopeless.] There’s no cure for MS.

There are medicines. Lots of ones. Which fly in the face of everything I’ve been trying to do — get off any medicines I’ve been on… It renders all my success useless. These medicines have great medical value. They’re a great improvement. A step in the right direction. However. No one can tell me about their side effects. Or more specifically about what their long term side effects are. I have to consider now a history of kidney failure in my family. I’m unsettled in making a decision to be on “state of the art” meds now in my 30’s; and then potentially be going through kidney failure on top of this in my 50’s. However, the doctors don’t want to consider this. They just want me to start the medicines. It make me question whether it’s out of necessity or out of pharmaceutical greed.

I have too many questions in my head. And I’m really awesome at putting them aside and getting busy with life. Just keeping on. But. That comes at a limit and a cost. The only person I know personally with MS, is incredibly unstable and uses this disease as an excuse for most of the things wrong in her life. I never. Ever. Want to be that person. I’m not sure how to stress that even more. I never want to be the person to say “I can’t do something because of this disease I now have. Because lesions on my brain and spinal cord affect how I think and act.” The fact that this may be even a possibility is devastating. And I find myself falling into the prediction /warning / side effect of being depressed. But. I’ll hide it. It’ll sneak out late at night while I should be doing my homework. Or. When there’s a powerful message at church. [it doesn’t even have to be powerful.] it can even come from simply talking about it. Having to explain that yes this is in fact what’s going on. And being greeted by looks of surprise, shock, and sadness. Then there’s the tone of pity or even tears that accompany the person receiving my news. That. Is not beneficial to me.

Telling me stories about someone you know with MS and their extreme changes and deterioration; telling me what you think I’m going through; telling me that you don’t want to speak life into the disease I’m facing so you’re just going to ignore it; those things do not help me. I’ll lie to you and smile and say thank you. But I’ll probably cry about it late at night when I can process everything that happened that day.

I’m not asking you to “baby” me, or to change the way you do things around me, or even to change the things we’re going to do. All I ask is that you understand there are some major things happening. Maybe to have a little bit of grace for me, when I’m frustrated or seem distant. I’m probably just trying to keep it together.

Let’s go back real quick to the quote from the National MS Society’s Facebook. “Multiple Sclerosis stops people from moving. The National MS Society exists to make sure it doesn’t.” Now, let’s go even further back to October 2012. Frustrated with my life, and being at my first Ancient Paths Seminar, I half demanded that God tell me what is the plan for my life. I was tired of being a wanderer in the desert for 40 years, without a path, without direction. True to the character of God, He answered me very clearly. I was to go and do. The night before He told me, I got into an epic battle with my dad in which I literally yelled “I’m never going back to school, get over it. It’s done.” I heard those words echoed the very next day. That’s when I heard God’s clear teeny little whisper say “I’m sorry. I didn’t quite hear you, what’d you say last night? Oh. You ARE going back to school.” …. It took me nearly 3 months to tell my dad. I acted under the premise that if I didn’t follow through with this, I’d end up in the belly of the whale [ie: Jonah.] I can’t just ask [read: demand] God to tell me what to do with my life then NOT do it. I’m still working out the exact details of this calling and what it means. And things have changed a bit along the way. It’s been prophesied over me a few times recently to go. [forward, eventually to different places; to be a missionary.] That I will go. How can I go if this is a disease that stops people from moving?

I can’t help but think that there is most definitely a spiritual element to the onset of this. I’ve had lots of healing prayer, and hands laid on me by our leadership and their guests. I started to feel like a broken record asking for prayer. I felt healed. I believed I was healed. They believed it. We thanked God and moved on. Then I had to get a second set of MRI’s done. And that’s when they found the lesion. So. A quick timeline recap. October 2012, I hear from God. September 2013, I went numb but my MRIs and blood work were all clear, to now, mid June 2014, when my second set of MRIs showed what appeared to be a lesion, a characteristically MS lesion. It’s generated some interesting responses. The hardest part for me leaves me questioning my faith. Did I actually believe I was healed? Did I really trust in Him? Did we pray hard enough, long enough? Did my pride get in the way? What happened? Mentally, I know that’s not how it works. But there’s this road block somewhere between my brain and my heart. My brain can piece it all together and understand. But my heart is broken because now I’m broken. Getting my heart to understand is the tricky part. And the enemy knows it. And is capitalizing on it. “You’ll have severe cognitive impairment” tells me “don’t bother with school anymore.There’s no point.” Amongst other things. And this is exactly what the enemy wants. He wants me to stop moving forward. He wants me to stop moving.

I can’t let him. Although, all I feel is defeated right now, I can’t be. I guess that’s where you come in. I’ll probably [read: definitely] need your prayer, encouragement, and normalcy. I need stability. I don’t want this to become the constant conversation we have. This can’t define me. It won’t define me. But. With that said. It’s still new. And it’s still fresh. It’s very emotional. And I think that’s ok. I think it wouldn’t be ok if I didn’t have this kind of reaction.

So. I’ve said a lot. And probably told you a lot more than you wanted to know. But. I felt it was important, for me to “stop keeping secrets.” So I guess this is where I say that I welcome your questions, comments, and weird strings of emoji’s.

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July 18, 2014
It was a beautiful day for a golf tournament…  (at Par Line Golf Course)

It was a beautiful day for a golf tournament… (at Par Line Golf Course)

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July 15, 2014
Homemade Paella… 👍👍👍👍👍 (at My house. )

Homemade Paella… 👍👍👍👍👍 (at My house. )

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July 8, 2014
Sometimes, I take naps with sweet baby kittens named Jack.  (at Thurmont, Maryland)

Sometimes, I take naps with sweet baby kittens named Jack. (at Thurmont, Maryland)

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July 7, 2014
Big ups to the Kennedy’s [and our small group] for an awesome weekend!  (at Thurmont, Maryland)

Big ups to the Kennedy’s [and our small group] for an awesome weekend! (at Thurmont, Maryland)

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July 6, 2014
Last night’s sunset; courtesy of Mark and Becca’s farm.  (at Mark and Becca’s farm )

Last night’s sunset; courtesy of Mark and Becca’s farm. (at Mark and Becca’s farm )

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July 5, 2014
My brother is cooler than yours. Here’s to another 29 years [hopefully—definitely more!] happy birthday John.  (at My house. )

My brother is cooler than yours. Here’s to another 29 years [hopefully—definitely more!] happy birthday John. (at My house. )

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Oh. OH. (at Hersheypark)

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Oblig. Fireworks photo. With some of the best.  (at Hersheypark)

Oblig. Fireworks photo. With some of the best. (at Hersheypark)

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July 1, 2014
Sometimes…. Necessary…. (at My life. )

Sometimes…. Necessary…. (at My life. )

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