Life Changer Part 3: Something's Not Right

I mentioned in my last "Life Changer" post (In July!) that I'd explain why we think I contracted something in Honduras. Only God knows what really happened. But in hindsight, knowing the issues I have now, it's likely that my health issues began in Honduras. 

That Was Like, So 7 Years Ago:

Let's go back to 2006-2007.  (Yes, I still say stupid things like the heading when joking around with Ken but it was more frequent in the glory days of high school :) In 2006 we had no idea that something was seriously wrong but the signs were there. I think my immune system was keeping the infections, bacterias, etc at bay until basketball season. I had really bad back and neck pain, but that kind of comes with the turf. I saw a chiropractor regularly throughout most of my senior year of high school (2006-2007). During basketball season's senior night I was pretty sick but didn't care so kept going (I remember missing maybe 2 days of school before I got to college). In the summer of 2007 my pain continued to get worse and our chiropractor said he believed it wasn't due to a structural problem and that seeing him was not really what I needed. I appreciate his honesty. He was right! 

So many memories...

Beginning of the Ceiling: 

One Sunday in July 2007 we were having a special get together after church with fireworks and ice-cream. Ice Cream!!! Anyway, as I was sitting in the service I felt this sharp pain in my lower back and felt tears welling up in my eyes. I was thinking, "something is way wrong" and decided to leave. I drove home and ran to my bed and screamed because the pain was so bad. That's the first time I remember staring at the ceiling and crying out to God. Lots of questions but somehow lots of praise because of what Jesus did for me. When God takes away your health somehow all other things in life eventually become praise items (it gets harder and harder to praise the more intense the treatments get). I'll never forget that evening. Didn't realize there would be SO many more days in bed staring at the ceiling. Sometimes praising. Sometimes asking "why" all day. Sometimes just staring. 

List of symptoms that I had not had previous to 2006-2007: (healthy as a horse from '89-'05)

-Neck Pain
-Back Pain
-Concentration Problems
-Decision Making Problems
-Severe Mood Swings

I know I'm going slow with these posts. I just pray that some detail helps someone on their medical journey. Been hearing about more and more people looking for medical help but find competent physicians lacking. Here is some advice that the first doctor gave, "just don't anything white". In other posts you'll hear more interesting comments from doctors.

I'm thankful we'll be going to a competent doctor tomorrow! Please pray. The disease is so volatile that we never know what the next treatment plan will be. 

*Robin 

Weekend Getaway

The Days We've All Been Waiting for:

Weekends are great, right?! For Ken and I weekends are mostly spent indoors. Ken takes on the frightening aisle of the grocery stores while I do a lot of sleeping (what's new?). We both try to clean, but I can do very little so he does most of it. Ever since I got sick I've had a hard time with allergies. Dirt and dust drive me crazy, and can even cause pain. Once we've gotten the apartment "Lymie livable" we usually hang out together and sometimes laugh until we're almost in tears...like we were tonight! To most young couples our life might sound incredibly boring and like we're already wearing dentures. I do feel old at times! And I might just need those dentures earlier than later because of teeth issues. But it's all good. We're growing closer during this time and Ken's become quite the cleaner. :) Thankful for him. We try to keep taking it one day at a time. 

A Great Time with Family:

This past weekend we traveled to Lynchburg to see my grandparents and some aunts and uncles. We had a wonderful time. As long as I slept in past noon my pain was minimal.  I only had one pain attack. Getting to see my grandparents was SO special! Good cooking, smiles, tender hugs, and great conversation. Here are some pics from the weekend: 

Wish we had gotten some with Aunt Mary and Uncle David too.

Trip wouldn't be complete without Snickers

Love my grandparents and hate that we had to leave. The trip was just the right amount of time to be away. It pushed my body some but didn't make me collapse. (More on traveling with Lyme disease is written on my very first blog post) Since being off antibiotics, we're just now getting to the point where we feel like we can breathe. My body is healing but the bacteria will keep spreading the longer I'm off. Doctor's appointment on the 24th. 

Love my family. 

*Robin*

What You See...

...

Is NOT what you always get. 

What Do You See? 

This is my friend Stefanie. I met her through another friend, Kara, who has Bartonella. Which is another painful condition that I struggle with too. We've all been in unimaginable pain for years. Do you see her pain? I don't see it in this picture. But this sweet, beautiful girl is dealing with pain that you probably can't imagine. With lots of illnesses  there are visible signs that you are sick. With Lyme, especially before you're diagnosed, the disease is invisible. And sadly, it takes SO long to get the right diagnosis. Pray for us please. Pray for good friends, real friends who understand and don't judge. Friends that try to "get" how Lyme affects making commitments, going shopping, going to church etc. Thankful for those type of friends in my life! You know who you are. :)  

"But you don't look sick."
One of the worst things to say to people who are hurting.  

Purpose in the Invisible Pain:

One of the hardest things throughout my journey with Lyme has been the fact that most of the time, especially when I was in college, I looked like a perfectly normal girl. I'm naturally a people person but slowly went into a shell. I felt like no one understood. Mom was always there to talk to at night but my days were filled with dragging myself to class, talking to the few friends who were understanding, and going to Barnes and Noble and hiding in the health aisle reading books on different diseases as tears rolled down my face while I tried to figure out which one I had. 

"But you finished college. Why aren't you working a job?"
Some other questions you might wanna avoid.

Before I got sick I was busy having a good time. (Good times are awesome btw! :D) I wasn't paying attention to people who could be in physical pain. I never felt pain other than stubbing my toe so I wasn't sensitive to it until 2006. I'm thankful for the opportunity to relate to people in pain. I hope one day I'll be able to say that I'm sincerely thankful for my Lyme. Not there yet but I know there is a purpose in pain. It comes down to faith-believing without seeing. I guess I'll wrap up this post with a line from a song that just came to mind. 

"Give me Your eyes for the broken hearted. Give me Your eyes so I can see. Everything that I've been missin' Give me Your love for humanity." -Brandon Heath

Keep your eyes open.

*Robin*

Coffee Table Revamp

Finally a post about something really fun: decorating! Really don't know what my personal style is but I like pretty things. Pinterest has revolutionized my world (as it has for many women...and a handful of men I guess???). I was able to get out yesterday so Mom took me to T.J.Maxx! I was able to do one little DIY project with my purchase. 

Here's what I got: 

-One flower arrangement-wasn't sure about the green but I really like it now

-Three pillar candles 

-Copper plated tray it's really heavy and my favorite piece! 

I obviously want to keep my favorite piece looking mahh-valous. So, I needed to put something under the candles but didn't see anything that I liked at the store AND I wanted to save a buck. So here's what I used for the bottom:

-Brown felt
-2 sided tape (My aunt graciously gave me some of this-don't know if she remembers). 
-Sizzix Big Kick cutter (you can purchase items like this cutter and circle dies through my Mom's blog: I Stamp, I Sew
-Sizzix Circle cutting-dies
-Scissors 

Steps:
1. I took a 8"x12" piece of the felt and cut it in half so I could send it through the Big Kick 
2. Cut my circles out. Had a perfect match for the orange candles but had to cut off some of the excess felt around the cream one-that didn't look so great but no one will see it :)  
3. Used my two-sided tape to attach the felt to the bottom of the candles 

 

4. Arranged them on the tray with the flowers and enjoyed the atmosphere-Ken liked it too. He's so supportive!
If I only had a before picture of the table. It was a bowl of candy haha. Like this a lot better!

Although Lyme has so much pain involved I'm thankful for the little windows of time where the fun and beautiful things in life have a stronger presence than the pain. Today was very hard. I was sore from the hour that we were out yesterday. I walked with my cane so, I guess no pain, no gain. Today I tried to rest but it was difficult. 

Thankful for some more progress with the apartment. We're on a 5 year decorating plan. :) 

*Robin* 

"Run Your Race"

Run the Amazing Race

Hey y'all. It's been a while since the last update. I haven't really felt up to doing anything. That includes FB, blogging, reading, Pinterest-ing (although that is my favorite zone-out therapy), and on somedays not even running! Actually typing "run" terrifies me. Will these legs ever get their muscle mass back? Hope so. Not being able to exercise, brain or body, has been one of the most challenging things throughout this process. It's not just physical. Your mind is attacked too. If I were only this?, if I could only do that?, if I could wash my face?...it's like that some days. People tell me, "don't think like that." And they're right, those aren't the best thoughts (except washing my face is something I think I should strive for daily-gotta get that commercial contract with Clean and Clear nailed down). So I shouldn't be thinking those thoughts but I do think them. So please pray.

It's good to here what not to do but a lot of times, especially with someone who is critically ill, it's better to love on them by praying and by actions of love-not just by rebuking them. I've seen my Mom love me in action and in emotional support. It lifts a burden off my chest, similar to how Jesus lifts burdens off of us. Thankful for those people who lovingly lift burdens off of me and encourage me to cast my burdens on the Lord. I'm also thankful for the people who have loved for many years and tell me what's up (Dad!). I believe that reality checks are good at the right time and by the right people in your life. Dad helps me a lot... "get my head in the game", "giving up isn't an option", "you finished college with this disease", "run your race"...I always told Dad I wanted to go on the show "The Amazing Race" together. We'd probably kill each other with are hard heads haha. Only kidding. We didn't go on "The Amazing Race" but we are running ours right now. 

Running shoes on! 

Neurology Appointment Brief: 

This past week we made our way out toward Cary to Dr. Glenn's office. I've been having more aggressive seizures with full body involvement. Dr. P's office scheduled our visit before the violent seizures because a full neuro work up needed to be done. I had all the major tests done within the last year except an EEG and a spinal tap. I will be getting the EEG asap and the spinal tap when the seizures are under control. 

There was a specific anti-malarial drug that I took for three days in the middle of my two weeks off of antibiotics per doctors orders. We believe this drug, along with the toxic residue from antibiotics, caused the intense seizures.

We were supposed to start on the antibiotics today but was told to wait because of what the body had been through and also to get calmed down for the spinal tap. The doctor believes that my reaction to the anti-malarial drug indicates a strong presence of Babesia. Babesiosis is a malaria-like parasite that is less fatal than malaria, although people with certain conditions are at risk. (More on Babesiosis). I don't have those certain conditions and am thankful. Lyme disease is much more complex and has many other critters associated with it than I realized. Please pray for our family and the doctor as we deal with the Lyme, parasites and infections. Hopefully these next three weeks will be a healing time with no additional issues. And maybe some fun times out on the town with my love! As I asked Mom growing up, "'Maybe' doesn't mean 'no', does it?" :) 

Love to all, 

*Robin*