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Sunday, November 11, 2012

Why I haven't posted lately

I know I have been absent from posting the past few weeks, maybe even months. There are a lot of reasons why I haven't posted. I've actually started quite a lot of posts, but I haven't finished most of them. Hopefully soon I'll be able to post more regularly.

Before you read this post, please know that I am starting to do better! It's been a rough several months (okay, well if we're being honest here, rough several years, but specifically the past couple months), but I am getting through it, and am starting to get out of the low point I've been experiencing. Everyone has ups and downs, and lately it's been a down time for me, but I am doing okay. God is faithful and seeing me through this season as He always has!

When I first started this blog in the summer of 2009, about six months after I was diagnosed, I thought it was only to keep my family and friends updated when I went to Reno, Nevada to my Lyme doctor. My mom and I were fixing to go to Nevada for a month when I started this blog. Since we live in Oklahoma, I thought it would be nice to have a place where people could get updates on me as I went through treatments across the country whenever they wanted.

I really never imagined that my blog would be read worldwide, and from what I'm told, be helpful to so many people. It's only through God that that has happened. He is able to use anyone in any situation if they are willing to be used by Him, no matter how bad the situation might be!

Now, since my blog is not just read by my family and friends and is read by
so many people in so many different situations, I try to spread awareness for a disease that is 100% preventable. I also want to share how I get through this with God so that hopefully others are encouraged and can see that they can also get through anything with God. I never planned to sugar coat anything, and I don't think I have, so I'm not starting now.

Everyone struggles in life. While it's good to be positive and upbeat, it's also good to share your struggles so that you can encourage someone going through the same struggles, just like the Bible says God enables us to do.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. – 2 Corinthians 1:3-4

Obviously I haven't posted every detail of this long journey, but I've tried to show what it's like to live with this disease to encourage others going through the same illness, or to help family and friends of those who are sick better understand what we go through on a daily basis. Unless you have this disease or are really close to someone who does, it's hard to totally understand the reality of what it's like to live with a late stage, chronic, neurological disease everyday, for years and years. Having a chronic illness is enough to deal with already, but with this disease we also deal with the politics. I have a post that I'm in the process of writing that shows what happens when I go to the ER and the doctor doesn't believe in Lyme and treats me so bad that we file a complaint. So that on top of the illness makes this disease very, very challenging and complicated.

So as I mentioned, there are several reasons I haven't posted lately.

A lot of days my brain is worn out just from going to class and doing homework. It can barely handle that, and then to try and blog after that seems almost impossible some days (I've been working on this post for over a month). Since the disease is in my brain, it causes a lot of problems. For example my concentration and memory have been the things that have suffered the most. My brain gets overwhelmed very easily since I was out of school for so long (on and off since 8th grade and then the last full three years of high school), and there is so much I don't remember. My memory is terrible. Just a couple weeks ago I hung out with a friend from out of town, and the next day, I knew I had hung out with someone and talked to them about certain things, but it literally took me hours to remember who it was. It's hard to admit that it's that bad. I want to deny that this happens a lot, but it's very noticeable when people bring up things that we did or that I said and I have no memory of it.

Not remembering the Friday that I hung out with my friend also had to do with the fact that I had gone to the ER on Thursday night, the night before, so I still had lots of medicine in my system. Unfortunately, that's another reality right now. The bacteria in my brain and the medicines I have to take both cause memory problems, so when you put those two together (especially IV medicines in the hospital), I don't remember a lot. I also went to my one class on that Friday, but I don't remember much of that either. Apparently I had the hiccups and they were REALLY loud during class, but I have no memory of that. For some reason, sometimes after getting certain IV medications, I get really bad hiccups the day after. It doesn't happen every time, but I've noticed it more frequently. I'm told it was really funny in class, but again I don't remember it.

Another reason that I haven't posted is that I just haven't known what to say. I'm struggling. I'm tired.  Not just tired, but exhausted. Physically and mostly emotionally. Lately I've also been mad. I'm not mad at anyone in particular, I'm just mad about what's happened and what's happening. I miss my old life. The life where school came easy to me. The life where I performed in musicals and took voice lessons. The life where my biggest worry was memorizing lines for a musical. The life where I was active in school and church. The life where I hung out with my friends everyday. The life where I could get up early in the morning and go until late at night and even be up a lot of the night at sleepovers. The life where I was able to be my age. I've had to grow up so much since I got sick and at times it feels like I'm 80 years old because of my memory and how weak I get.

One of the things I've been most frustrated about are the brain problems I mentioned earlier. My brain is just not the same as it used to be. A lot of times, I feel bad for mentioning it or getting upset because it's not like I'm getting bad grades. I'm really not. It's the fact that I now study for 7 hours for a test and still make a letter grade below what I used to make without studying much at all. I don't think I've missed my old life as much as I have this semester. I'm ready to be well and be able to do things normal people my age do. I've missed out on so much because I got really sick at the beginning of high school and missed the rest of it. And it's so frustrating that at age 19, I have little memory of what are supposed to be the best years of my life because of the bacteria in my brain, and all the medicines I've had to take over the past 4 years. It's frustrating to say the least.

I started counseling about a month ago and that has been really good. They give free counseling here at school! Everyone has told me that I should have started going to counseling when I got sick, but I never did. I now realize why I haven't wanted to until now. Every single one of the doctors who thinks Lyme doesn't exist, or thinks I'm making things up for attention has told me that all I need to do is go to counseling because all my physical symptoms are in my head. So why would I want to go to counseling when from the stupid doctor's perspective, that's all that's wrong with me? I felt like going would be giving in to them. But, this semester has been very rough and so I decided I needed to go. It's NOT giving in to the stupid doctors, and they are NOT winning by me going. My counselor is helping me see that.

Another thing that I've been struggling with is that one of my best friends isn't here like she should be. It's been about 8 months since she went to be with Jesus. In one way, I am so thankful that she is safe in the arms of Jesus in Heaven. I am so thankful that she is not in pain. That she doesn't have cancer anymore. That she has no tears or fears or pain. She's exactly how God made her to be and is in the best place for eternity with God. And one day, hopefully after I've lived a long life, I'll join her in Heaven and see her again. So I really am very thankful that she is safe with Jesus, perfect and whole.

But I miss her so much. She's supposed to be here. We were "sick buddies" as we called each other. We had gone to church together for as long as I can remember, but she was a grade ahead of me so we weren't close friends. But we were diagnosed within a month of each other, and immediately became best friends since we understood what each other was going through. No one else could really understand. She was diagnosed with Ewings Sarcoma in January of 2009, and I was diagnosed with Late Stage, Neurological Lyme Disease on December 3rd, 2008 (but I had been sick for 2 years before that and no one could really figure out what was wrong). So since we were diagnosed and became best friends, we hung out while everyone else was in school, whether it was in the hospital or one of our houses. We texted almost constantly and shared our frustrations with what (well meaning) people said to us that made us mad when people don't know what to say. We talked to each other about what it was like to be sick for so long and just the frustrations that went along with it.

But the most important thing was that we talked to each other about was our faith in God. I can honestly say that neither of us ever got mad at God. A long time ago we realized how much we needed God to get through our illnesses. We both trusted God's plan no matter how hard it was and how much we didn't like it. Most times we didn't understand what God was doing, but we never got mad at Him. We were able to talk about everything because we were the only ones who really understood. No matter how hard you try, you just can't understand what it's like to be sick every single day for years unless you've been through it. Even the closest friends and family can't completely understand because they aren't sick every single day.

So when I've been having medical problems, or when people say things that just shouldn't be said, I want to talk to her about them. One of my other best friends is in Europe on study abroad. She's been gone this whole semester and will be gone for another month. Another one of my best friends is at another college in another state. And so yes, even though I have other great friends here, several of them are not. Obviously the hardest one is not having the friend who really understood what I was going through here. So now when I want to talk to Rebecca about medical things or my frustrations, I talk to God. And that's been great for me to talk to Him more, but I still miss her. I'm just so thankful that she's safe with Jesus.

Physically, I've been struggling, but as always, I'm doing the best I can no matter what! I have an appointment with a rheumatologist on December 6th. By then, we will have been waiting for this appointment for over two months.

There are either two things going on with me. Either I have a new auto-immune disease/disorder, or the Lyme has come back very rapidly and severe. My hands are constantly swollen now, in the mornings I'm not able to close them into a fist for a while until they become unstiff (is that even a word?), I have at least 6 swollen lymph nodes in my neck and head that have been that way for a couple months now, my hands at times stop working (I'll be holding something and my hands will go limp), I have fever almost every day, I am having more fatigue, more nausea, more trouble sleeping, some breathing problems (which is why I went to the ER a couple weeks ago) and many other symptoms. Some blood work came back indicating an auto-immune problem, so with the fast onset of my symptoms, my primary care and Lyme doctor said I needed to see a rheumatologist. Once we go see him, we'll talk to my Lyme doctor (in Nevada) and see where he thinks we should go from there.

I'm still seeing my pain management team about once a month! They are incredible and are so supportive. I think we've found the right pain medicine for right now so that's great. It definitely helps and I'm so thankful to have them!

Despite all of this, I am still going to my classes! It isn't easy, but I haven't missed very many lately! I'm also still living on campus and I'm so thankful for that! I really am so thankful.

So as you can tell, the last few months have been challenging and rough. But I can honestly say that God has never left me, and that I've never been mad at him. Never. He is the only thing that is constant in this life. I can never count on anything anymore. One minute I'm fine, the next I'm doubled over in pain and in the hospital. But God is always the same through every season of life. He is my hope. My joy. My peace. My comfort. Have I questioned His plan and timing? Probably every day of my life to be honest. But that doesn't mean I question HIM.

A couple weekends ago, they had a seminar at church called "Hurting with God: learning to lament with the Psalms". It was incredible! There is a book that goes along with it, and I am working on a post about it! I know that it will encourage you no matter what season of life you're in.

Like I said, I've been working on lots of posts even though I haven't published them, so hopefully soon I will be able to finish them! I usually have to sleep several hours before and after my classes (I'm taking 3 classes) right now because I'm so exhausted, but hopefully I'll be up to posting more now that I got this huge update done!

4 comments:

  1. Sweet girl, there are so many of us who wish we had a magic wand and could make this all go away. It hurts to see you hurting, but your resolve to not give up and to keep pressing on is inspiring. Still praying for you always, but saying a few extra tonight. Love you!

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  2. I love your description of trusting God and his plan no matter what our circumstances are. I am growing my relationship with God and my journey ( we are sharing the same stage and primary illness) I feel myself letting it go to him and trust...so hard. I am so prooud of you going to school, have you heard the poem go it anyway...I think Mother Teresa said it. That is Lyme life, as much as we can we live life to the best of our ability anyway. I believe God will use and transform our suffering into something spectacular. He has a cast in a heavenly musical and some day we will know what sweet song this was all about. Yielding my heart to him. So glad I got to meet you, I am praying for you and I love what you write,In God's xomfort, love and light. Holly HK Kiely from PF Chang's.

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  3. just read your blog, it's a really tough journey for you but i'm really amazed with your faith to God,you're such an inspiration.

    i have no idea what is lyme before, now i do. i wish you all the best, and hope you get well soon, GOd is with you, nothing is impossible with Him :)

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  4. thanks for your candid post...i have the same diagnosis and have also been going through a rough time.

    your blog has been encouraging to me since last summer, when i came across it. May God encourage you and uphold you with His mighty hand.

    it's nice to know we're not alone.

    p.s. a song i've been listening to on repeat lately - "come to me" by Bethel music

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