Since being diagnosed

In December I was finally diagnosed with chronic Lyme Disease. The weeks leading up to the diagnosis I had many emotions flying through me, part of me wanted a positive result because then I'd finally have a name to what I've been dealing with for the past 7 years. Part of me was terrified that I'd finally get an answer but that nothing in my life would change, that after all this waiting and anxiety over this test, I'd get an answer, do the treatment and I'd still be sick. And then the other part of me just feared another negative result and being back at square one.

My doctor called me and I can remember the first thing she said to me was, "Well, I got your test results back and I can say one thing's for sure, they're really weird." She continued to tell me about the results, I can remember just sitting there trying to write down and make sense of everything she was saying. She talked about the different courses of treatment we could take and which one she felt was best. I was excited, I felt validated, I was anxious to get started, I was terrified this wasn't going to work, I almost couldn't believe we finally figured it out. I was feeling many things all at once.

My treatment plan was going to include oral antibiotics as long as my stomach could tolerate them for at least 6 months or so and then we'd go on from there. I've been dealing with a chronic infection for 7 years, it's going to take time to treat, I was warned. The morning I got my antibiotics I just about had a panic attack before swallowing the huge blue pill. I was so scared that it was going to make me incredibly sick, that my stomach wasn't going to tolerate it, that we'd have to back track and find something else to try. I sucked it up, calmed myself down and took the pill. Nothing crazy happened! For the first couple of weeks it made me rather nauseous for about an hour and I had a dull stomach ache all day. But all of this was tolerable, I could put up with this.

A month later my first set of antibiotics was complete and it was time to move onto my second set. I went from a huge blue pill to a small pink one. These pink ones don't make me as nauseous but they have some other unpleasant side effects I won’t go into. But again, nothing I can't handle.

I wish I had more to say about it. I wish I was already feeling better but in all honesty I'm only feeling worse. My body is weak, my dizziness is constant and my spirits are low. Sometimes I wonder what this life would be if someone else was living it. Could someone live my life better than I can? Sometimes I feel like this is all my fault, that my life would be better if I would just suck it up and go do stuff…whatever that means. But then I have a day like today where I try to be really productive, which to me means doing laundry or taking a shower or vacuuming my room but definitely not all three in one day. This morning I woke up and decided that today would be a laundry day. So after breakfast I pulled all the sheets off my bed, duvet cover, pillow cases and carried them to the laundry room. Just that amount of effort left me feeling miserable! I laid in bed, not sure which way was up because I was so dizzy and all I could think to do was just sleep. I can't even do laundry like a normal person. I don't know why I'm writing all of this, it makes me feel so silly haha. But I guess what I'm trying to say is that having the thought, "just get out and do stuff" isn't helpful because my body can't actually do that, I'm not physically capable of doing that yet.

I'm currently discouraged and disappointed that I'm not feeling any differently since I've started treatment. And I know it's only been two months, I know I'm being really impatient but I'm just frustrated. Thankfully though the internet makes it very easy to find people from any and every walk of life and I’ve recently come across a 21 year old girl who was diagnosed with Lyme a couple years ago. We have very different stories but our stories have at least one common theme. It’s a little scary because although she’s been diagnosed and on treatment for a couple of years, she still deals with symptoms every single day. On the other hand, it’s also encouraging because for her, she didn’t see or feel any improvement for at least 6 months into treatment. This is encouraging because it’s only been 2 months for me, I shouldn’t be so worried that I haven’t seen any improvement yet. It’s also great having some to talk to who really understands what it is I’m going through, someone who has gone through it herself, someone I can ask questions about what to expect and what helped her get through it. Someone who I don't feel like I'm disappointing because I can't go out and do stuff like I want to. Someone I don't have to prove myself to.

But you don't look sick.

I don't have the greatest self-confidence and a lot of it comes from the fact that I feel worthless being sick all the time. I've also dealt with a lot of issues involving people taking me seriously because I don't look sick most of the time. I walk into doctor's offices and I'm smiling, I meet new doctors and I'm smiling, it's just the way I am. But I think because of that I don't always get taken seriously, not just with doctors, with everyone. There was awhile when I was dealing with just my dyspepsia (around my sophomore year of high school) where someone close to me seemed to think (or at least made me feel) that it was all in my head and that I was just a "picky eater". Ever since then I've been really sensitive to whether or not people "believe" me. I know it's silly to care about what other people think but I can't seem to help it.

Anyway, it really bothers me when doctor's make me feel like I'm making everything up. It's a concept I don't understand. Why on earth would I waste my time and money on all of these stupid doctor appointments if I were faking it? WHY? They're not fun, they make my anxiety go through the roof, who finds enjoyment in doing test after test, getting blood drawn time and time again and trying new medications with unpleasant side effects? I just don't understand that mind set. So when doctors make me feel that way, I take it hard. It makes me feel bad, it hurts me. I'm a sensitive person, always have been, always will be and that's never going to change. I'm not saying that people need to cater to this, I'm just pointing out that's who I am.

The last time I went to an ENT was two years ago so when my family and I took a road trip this summer and we saw how badly I reacted to higher elevation we thought maybe this would be information an ENT could use. When you get to the point that I'm at, when you've been dealing with something every day for almost three years, information like this always feels like the missing puzzle piece, so you take it seriously. Anyway, today was my ENT appointment and after waiting an hour in the waiting room I finally got to see the doctor. My mom and I walked into the room, we took our seats, the doctor asked me to tell him about what's been going on and I gave him a very VERY short version of the past three years. I've been doing this long enough to know what's important enough to tell which doctor, for this one I really only needed to tell him about my previous ENT and neurologist appointments and the recent roadtrip. The first thing out of his mouth was something along the lines of, "So you don't drive right?" I was kind of taken back by it, I wasn't expecting that at all.
"No, I still drive."
"Then your dizziness isn't constant is it?"
"Well, no...I'm always dizzy...It is constant."
"Then you shouldn't be driving should you? If the world is spinning around you how can you drive?"
"Um...the world isn't spinning around me, I'm the one spinning."
"Still how can you be driving?"

All I could think was, "Am I on trial here? Are you trying to prove me wrong or something?" It was so disheartening. Don't get me wrong, I see where he's coming from. If you're spinning bad enough you probably shouldn't drive but I've been dealing with this on a daily basis for long enough to know my limits. And there have been MANY times when I've chosen not to drive because of it, ask my friends, family, previous relationships. They've all been there to come get me or to let me stay longer until it's passed. Of course, I didn't say that to the doctor because I was caught so off guard. And yeah, he's a doctor, he's done the schooling, all the hard work, spent years studying to know what he's talking about, I get that. But when you approach the situation like he did? It's uncalled for.

He seemed more interested in that than anything else, the fact that I still drove. Then he proceeded to diagnosis me with something I've already been diagnosed with but the medicine had stopped working for. He also told me that I should go back to a previous neurologist of mine, the neurologist who didn't seem at all interested that the medicine he'd given me had stopped working and who told me that I'm so weak because I don't lift weights.....Also, I want to point out, first I went to an ENT who referred me to a neurologist...two years later I see a neurologist (referred by my PCP) who refers me to an ENT who has now referred me back to the original neurologist. AGH haha I can't help but laugh because of how ridiculous this all is to me.

I guess the whole point of this is just to be heard. I'm feeling a bit down, not because I didn't find out anything new but just because there's another doctor not taking me seriously and making me feel stupid. I'm not stupid though, I know what I go through every day of my life and I can't expect anyone to understand that. Especially a doctor who is mainly controlled by insurance companies. Ok ok, maybe that last sentence is a bit cynical but it's hard to think different when that's been my main experience.

I will end this post saying that despite all of this, things could be worse. I'm thankful for this life God's blessed me with.

bandwagon jump!

So, I'm jumping on the bandwagon and starting my own blog, along with everyone and their mom. Well, except my mom, she doesn't have a one...yet. Anyway, enough with the unfunny jokes and onto why I'm really starting this blog. In this past year, and probably even before that, God has started a new direction for me. I have really learned so much in this past year and I'm in a very new place that I am ever so grateful for. But one thing that is still a huge struggle for me is my health and not being able to be out in the world as much as I'd really like to be. But I still want to share my story, with anyone who is willing to listen.

Last night I was sitting in Starbucks with one of my best friends BG (and I am one of her twenty best friends) and when I started to share with her about what God had been doing in my life I got really excited. I was so filled with joy to be able to express the lessons I have been so intensely learning over the past couple of months. Then as I laid in bed tonight trying to sleep, I kept thinking about how I just wanted to share with someone what I was going through tonight. Now it is Wednesday and normally I could share this at college group but my body wasn't cooperating so unfortunately I had no outlet. But that lead me to decide to start my own blog so I could share these life lessons with anyone who wants to read.

So here it goes, one of the many lessons God has been teaching me lately: Originally this seed was planted weeks ago when I was sitting at college group and SC started talking about our motives, you know the little things that drive us to do the things we do. I hadn't really thought to much about my motives before but that night I realized that a big motive behind my desire to be healed were very selfish. But that's not really what this blog is going to be about, that's just where this whole thing started. Then little by little for the next couple of weeks God kept bringing motives to my head, I kept hearing, "What are your motives with this? Why do you really want this? What are you hoping to accomplish with these words you're saying?" And I really started to pay attention to why I was choosing to do or say certain things. I realized, this past week that I had not been fair to someone in my past, let's call him Tin Foil. I realized that anything I said to or about Tin Foil was to either hurt him or make him sound like a bad guy. Don't get me wrong, the things I was saying were all true things but I definitely did not need to be saying them the way that I was. My motives were very selfish and hateful. I still wasn't sure what God wanted me to do now that I had come to this realization but then I hung out with a great and beautiful girl AD. She's going through some really tough stuff right now and all I see from her is pure strength. But that's not what this post is about, anyway she was talking about this guy who has treated her in awful ways. Well, as she was telling me everything I kept thinking, "Wow, I really have not been fair to Tin Foil, he may have been an idiot in some of his decisions but he wasn't anything like this guy." And that's when my heart started to burn, like it does when I know I'm supposed to do something. So that night I built up the courage (with the help of another beautiful woman LL) to be vulnerable and obedient to what God wanted me to do. It was hard and I cried a little but afterward I felt completely free.

At that point in time, I thought that everything in that situation from then on out would be a breeze because I did what God had put on my heart. Well, I think it created a little bit of drama (I still don't fully understand why but that's besides the point) because that night I received a Facebook message from Tin Foil's girlfriend and a text message from Tin Foil saying that we can not have any sort of friendship at all. I definitely wasn't expecting it but after thinking about it and sleeping on it, it's really not a big deal to me. It's not a big deal to me because I know, in my heart, that God wanted me to do what I did and He knew what was going to come from it. So I'm just trusting that this is what He wanted, there's a reason for this :)

I'm going to continue working on my motives in all areas of my life.