Sunday, July 28, 2013

Life Changer Part 2: Honduran Adventure

A Little Update First: 

I'm sitting here watching my Vitamin C IV drip-drop down the tube into my vein and sipping on my iced drink. I usually do a C IV every weekend and it makes me really thirsty so Ken gets me an iced tea of some kind from S-bucks as a treat!  My new favorite is the iced peach green tea lemonade unsweetened (shew what a mouth full!). The C bag helps flush toxins and die off out of the body and usually makes me feel very sick during the IV but better the next day. 

Our follow up visit is tomorrow and we'll find out what to do for the next 6 weeks or so. Still in loads of pain and have the seizures but every now and then I feel like we're making progress. FB messages and emails are hard to keep up with because I have to process and form answers which, for a Lyme brain is very difficult. Still love y'all...even if it takes a year to get back to you ;)


The summer of 2006 I went on a mission trip to Honduras with the youth group from our church. This was the summer before senior year of HS. I'm so thankful for the opportunity to go on this trip but ever since that summer I've had health problems. Throughout this whole process we've tried to make sense of all that has happened. God only knows what really happened in my body but this is what we believe went down in Honduras:

-Went swimming in a pretty dirty waterfall (as a teenager you don't care) Jumping of the side of the waterfall was fun. 
-After swimming we changed into dry clothes for the ride back
-Noticed 3 leeches on my stomach 
-That evening we had a youth activity with the local kids
-Felt incredibly sick while cutting out flannel graphs for the event that evening
-The activity was at the missionary's home and I ended up sleeping inside the whole time because I could barely lift my head. I was so discouraged and knew something was very wrong. 
-Two days later we headed home. 
-I had a rash on my face and my eyes burned like crazy but there was nothing I could do. 
-I usually never got sick so this was a rude awakening.

We believe I contracted something from the leeches or through the water. Possibly bartonella, parasites, babesia, mold, fungus, etc. We just know that my health has steadily declined since that trip. We don't believe I contracted Lyme there. I will explain our theory on that in Part 3. 

Just Around the Corner:

God allowed me to go on this trip and knew what would happen to my body. Sometimes I think, "what if I didn't go? my life would be so much easier now". Maybe that's true but easier isn't always better. That statement sounds good and is easy to type but hard to believe when you feel hopeless-when you find yourself in circumstances you can't control. We are all very weary with the treatment protocol. We are thankful for answers but overwhelmed by the complexity and severity of the disease. 

I am hoping for a day when we look back at the pain and see the purpose and the good in it. I definitely see the world and people in a new way because of this experience. When people are in pain I am deeply burdened. When I am able to walk outside I'm extremely thankful. 

There's light waiting just around the corner. Don't give up. 


Tuesday, July 23, 2013

Why "The Rounded Corner"?

Pep Talks: 

Ever since my health problems started, Mom has been a constant source of encouragement and gives the best pep talks I've ever heard. Many times I don't believe what she's says. I'm scared to use the words, "when I get better" or "when I'm able to cook, work, swim, etc.". I need to have more faith. The thing is, I really don't know if I'll get 100% better. What most people don't realize about Lyme is that it's a disease. When someone says they have ALS, Parkinson's, Addison's, or Crohn's disease I think that they have it for life but they can manage it with different treatments. When Lyme isn't caught early enough, the same scenario is true. It's a disease. You have to stay on top of it or it will come back.

Anyway, back to pep talks. We came up with the name, "The Rounded Corner", for our Etsy shop and blog through an analogy that we go back to often. We're in a dark tunnel right now, we see little flickers of light that help us keep going but we haven't rounded the corner to completely see the light and the good in all of this.  Some days there isn't a flicker of light but that's when I'm reminded that we walk by faith and not by sight...literally! 

Our Etsy Shop:

The Rounded Corner offers hand made paper items, especially cards. We used to offer crocheted items but recently chose to keep it to paper. Mom makes the majority of the goodies in the shop and I post the items on Etsy then blow up everyone's newsfeed with our newest creations and sales. :) I enjoy making cards too and believe that it's really good to have a low-stress hobby when you're going through Lyme. We chose an Etsy shop because we can work at our own pace and earn some extra money. I fell flat on my face every time I tried working outside the home. I'd literally collapse in pain when I walked in the apartment after work. Had no clue at the time what was going on and how serious it was. I'm thankful that I didn't collapse today and was able to continue with my butterfly cards (which will be in the shop eventually).

Right now business is slow because of no major holidays I guess. We have lots of bright, fun cards posted and will be adding more soon. Take a peek: Our Etsy Shop!
Right now we are running a sale. Read the shop announcement at the top of our shop's page! 

Shining Brightly:

A slogan we came up with for our Etsy shop is, "The light is at the end of the tunnel. Shine brightly while you round the corner to get there." 

There are so many days I lay in bed and wonder, "how in the world can I shine when I can't even move, speak or form thoughts?" But the days (and late evenings) that I have enough strength to do things is the time to shine...well, I guess both days have shining potential with Jesus in the mix. It's very easy to get self focused with this disease because you're constantly thinking of what you have to do next, which antibiotic, what pills, how to get to the restroom, how to sit up, and on and on the list goes. I'm so thankful for my family and friends who have come and seen the seizures and still love and shine their light.  They choose to walk through the tunnel with us. Try walking through a tunnel with someone-you may never know how much it means to them. 

What does shining brightly mean to you? Some days I'm interested in answering that question and acting on it and other days I honestly could care less. Praying for strength to shine. Don't waste your Lyme Disease. Don't waste your life. 


Friday, July 12, 2013

Life Changer Part 1: What was going on before

First an update:

Lately it's been a horrible ride with Lyme, bartonella, babesia, etc. I really don't have answers to why my body is crumbling. I just have to believe what the doc and other patients say about the get worse before you get better. The antibiotics are causing hair loss now but we're hoping that will clear up.  All these crazy symptoms keep me from going out or holding conversations with people most of the time. major bummer. 

When people ask me how I got sick I really don't know where to begin or if they really want to sit through an hour monologue of me trying to explain what happened. We aren't even exactly sure how I got to this state but we do know a lot. I'll try to break it down. 

What I was up to before my body was invaded: 

-Golfing with Dad
-Skiing adventures
-Getting to know all kinds of people
-Missions Trips (traveling. yikes! that word scares me now)
-Jumping off waterfalls on one of those trips
-Taking chill pills for trying to be the best
-Hanging out with friends
-Enjoying life 

Old school pic at Kristin's house

Just jotting these memories down brings a smile to my face. I remember the good times but I don't remember what it feels like to live a day without pain. I guess when you're healthy you don't think about how easy it is to get around and do pretty much anything you want. I'm learning I took so many things for driving a car, among other things.

Those times and that person were about to be stripped away. Our family would never be the same after summer 2006 missions trip to Honduras. More on that in Part 2 of the Life Change. 

The days are going by and I lay in bed feeling like my life is wasted. But it's not. Dad reminded Ken and I tonight that our faith in what God's doing is something we can do at all times. Lying in bed or running a marathon we can still have faith in God's plan. So like Job, I doubt and question but I know in my heart that there is something bigger, something outside of myself in all of this misery. I would highly recommend Don't Waste Your Life by John Piper...need to read it again. 

"Hope in God, oh my soul. He is strong, and He is strong to save. He's a mighty fortress"


Tuesday, July 2, 2013

Surprise from "Team Robin"!

Today was the start of the second week on antibiotics for this round. So that means next week is OFF week! This past weekend I was super down because of a miserable week. I feel like my body and life are just wasting away. That's what I "feel". Learning that you cannot rely on feelings, especially during hard times. 

On Saturday Ken was getting some groceries and I heard a loud knock at the door. In my physical condition I get a little spooked when someone knocks when Ken's not here. So I grabbed my cane :) A little paranoid, I know. I hear someone unlocking the door and in walk my awesome parents with an amazing 4 star balloon bouquet! Each of the stars had "Team Robin" written on them and every balloon had our faces drawn on with a sharpie. This was SO encouraging! 

Mom and Dad have often referred to us as "Team Robin" during this trial because we all play different roles in the healing process: 

*Ken-incredible provider, friend, the most patient man I know and my love  *Mom-incredible nurse, friend and business partner (check out our store here-The Rounded Corner)! 
*Dad-incredible provider, friend, and encourager...he has a great sense of humor too and  keeps me laughing :) 
*Snickers-our Jack Russell not included in the bouquet...he comforts me when I'm down

At first I resisted being the one who was bedridden and floorridden. I wanted to contribute to the family and to society. I am realizing that this is a time to let go of independence and let others help. Most days I have no choice but to be dependent. I'm so thankful for my family who sits around me on the floor or holds me up at the dinner table so I can eat with them. A good support system is a blessing. The friends that have shown love have also been an extreme help. We are in this battle together, making progress and learning to walk by faith and not by sight!


Monday, July 1, 2013

Guest Speaker

Since it has been a very difficult day, Ken volunteered to do some of the blog post tonight. But before I show you his video on Lyme supplements, I'll introduce him :) 

Ken is my loving husband of almost 11 months. I was diagnosed with chronic Lyme about 3 months after we married. He knew I was sick but chose to marry me anyway...little did we know the road we'd be traveling. My health rapidly declined last fall and he put his plans of more schooling on hold and went to work to provide for our needs. He has shown me unconditional love and acceptance since I've known him. Thankful to have this man in my life...can hear him killing himself with ab ripper right now haha. 

About 2 years ago-in incredible pain here.
PICC line probs-he keeps me smiling
Lyme is really complex (as in it can attack every system of the body) so each patient's treatment plan differs and usually changes based on how things are going. Just tried to upload Ken's video but it's not working. We'll have to try recording on another device soon. At least I got to introduce him. :) til next time peeps...