New Treatment Plan

Change of Plans:

I had my last check up about 2 weeks ago. Had a seizure in the nurse's office before seeing the doctor. He came in the room and saw the seizure in real life and because this has been going on for so long he decided to change my treatment plan. Most of Dr. P's neurological Lyme patients follow a protocol of 2 weeks on antibiotics and 1 week off. Each round should get easier and less painful for the patient. I wasn't getting better.  

Currently I'm doing 2 weeks on antibiotics, 2 weeks off. We have seen a decrease in seizures. Although they do happen. I seem to get them when I'm around people, like at the clinic or when people come over. I hate that because the "old Robin" loved being around people! I want people to know that I care about them and want to talk, but my nervous system can't always handle it. I even have seizures on occasion when I'm talking to Ken and Mom or Dad. It's crazy. Overall we've seen improvements over the last 2 weeks. I'm now on my 2 weeks off. We are hopeful about this new treatment plan. 

High Hopes: 

I always get my hopes up. I think that the weeks off will be better. Day one has been difficult but I managed to get up for about an hour or so to take pictures for our Etsy shop. Oh the things I took for granted. It's amazing how making 1 card makes me smile so much. It's the little thing that I treasure now because of the situation. I never thought life would be this way. I didn't know that a person could feel razor blades and knives in their back. So many people in the world are suffering. They are feeling razor blades as I am right now. I don't mean to complain about the pain (although I often have an unthankful heart). I talk about the pain because I want to get the word out about Lyme and how it affects people's lives.

Many friends encourage me through email, FB or text and it means so much. 

Here's my main support group :) 

My supportive husband. Thankful for a faithful man

Still like to goof around

Mom's side of the fam at Teresa and Danny's wedding. They are so loving. 

Shine brightly and pray for Lyme patients around the world!

-Robin 

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 ;)

Honduras: 

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. 

*Robin 

Mr. Herxheimer

I thought I'd write this post while I was actually "herxing". For the Lymies out there you know that it probably will take me 2, maybe 3 hours to write this! 

As I mentioned yesterday, I'm back on IV antibiotics as well as oral antibiotics. I'm on for two weeks, off for one then back on for 2 weeks, off for one. This method is called pulsing. When I start on a-bombs (antibiotics) someone else always comes along, Mr. Herxheimer. 

Meeting Mr. Herxheimer

Lyme disease has more crazy, painful symptoms than this post has time for explaining. Once the antibiotics start to kill the bacteria in the body, Mr. Herxheimer makes his entrance. Here's how he works. "Herxing is believed to occur when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. This provokes a sudden and exaggerated inflammatory response." (Chronic Illness Recovery Education) So basically all the crazy, painful symptoms that you previously had are intensified for a while because the toxins have nothing to do and nowhere to go so they take it out on you! Here's a pic of when I came out of a routine herxing episode: 

Thankful for a bed and my chevron :)

No one sees these moments but my family and some friends, and now you. I share this because I want people to know about chronic Lyme issues and I want to encourage other Lyme sufferers that they're not alone in the battle. 

"I lift my eyes to the hills. Where does my help come from? My help comes from the Lord, the Maker of heaven and earth." This is a verse that has helped me get up after being curled up in a ball of pain from herxing. There is hope! 

*Robin* 

Traveling with Lyme Disease 101

As most  Lyme patients know, traveling is extremely difficult. You have the meds, accessories (wheelchair, cane, shower sleeve, etc.), the frustration of having to ask everyone to help you with just about everything. Then, once you reach your destination you're wiped out and just wanna stay inside. If you decide to travel, here are a few tips:

-Try to plan your vacations on your off weeks of antibiotics...if you are on that schedule
-Get as much rest before the trip as you can
-Let people help you! (So hard to do. But don't steal their opportunity to show love to you)
-Start the packing process a few days before you leave
-Avoid traveling long distances if possible
-Avoid traveling to primitive locations. Let's not catch another disease!
-Simplify your outfits and bring plenty of comfy clothes
-Take as many pictures as you can! The good memories are few and far between during Lyme treatment so savor the good ones...even if you're in pain

I'm speaking as a young married woman with no kids so I'm sure they're are more things to remember when traveling with kids. Please share your insight about how you plan your travels with Lyme and children! 

Our Weekend Getaway

Ken (my amazing hubby) and I are blessed to live 5 minutes away from my parents. So when they're gone we take off for a vacation....to Mom and Dad's :) We love taking care of their/dog, Snickers! It's nice to have a change of scenery and to create in Mom's stampin studio! 

View from our resort

Started back on antibiotics this week. That involves 3 oral antibiotics 2 times a day plus 3 IV bags on most days. This treatment puts tremendous strain on the body. When I'm in the heat of it I often think about the other Lymies suffering and the loneliness they're feeling too. More on Lyme education later. Until next time! 

*Robin*