well this is the 4th time I’ve tried writing this post! I am learning many things still. I think that is one of the greatest challenges with Lyme Disease. Billy and I study and research as much as we can daily and we find new things out everyday. Many things that we already are aware of, new symptoms I start getting, old ones that come back, different testing at Universities, connecting with different doctors, meeting new Lymie’s each week and exchanging stories with them. Billy contacted and talked to a research scientist in Florida who is trying to get better testing for Lyme. He actually got Lyme himself a couple years ago. Billy and Dr. Clark talked for about 2 hours and it was just nice to have someone who understands listen and share their story all the while He truly knows what I am experiencing and is too, trying to do something to help others.
1. Trying to live life through this “new” body that I am in right now! (who knows for how long but having to readjust)
2. Trying to find time to get this non-profit started, while working on my documentary, and keeping up with my blog…by the way my main job – being a mommy and a wife to my incredible gifts God gave to me!
3. Setting up a support group for all the lymie’s I’ve met in our area so far…we all truly seek and desire it so much.
4. Keeping my husband and mom who are with me daily strong! Which I can’t do anymore…because my body is too weak.
Saturday is my baby girls birthday party. And if you know me, I LOVE PARTIES!! I love to plan them, I love to decorate for them, and I make everything…well this time I have had to sit and watch my dear mom and friends do all the work. It was hard, I’ll have to admit especially when I should be able to do this, I am only 29 years old and healthy right? (tears falling down my face) It is so frustrating when you can’t even tie a ribbon because you can’t control your fingers and they hurt so badly! That was yesterday! But cake pops were made, and decorations are slowly coming up. Some of you (maybe the men) can’t appreciate this as much or are thinking why even do decorations or have a party…this is one of my love languages – PARTIES!! Is that one, I can’t remember, well it is one of mine! Why? Because I love PEOPLE! I love my family, I love our friends and neighbors and I love for parties!! My daughter even though she doesn’t really know that this is all for her, I do and she deserves the best! And so does everyone else coming to celebrate her! So, honestly I had to get help and how thankful I am to all my dear friends who have been helping and offered to bring things! I’m getting better at asking for help or letting people help! Thank you mom, Courtney, Layne, Tammy Dugger for all helping me yesterday.
I am learning that I have some really good days and then it comes again, the hard thing is I have no clue when (except if I do not sleep the night before or get to bed very late) Well Monday on Memorial Day I could not sleep, didn’t sleep but probably two hours. I was experiencing some cardio/nuero symptoms that were keeping me up. So Tuesday was rough, I won’t even tell you all the details but Elliana woke up with a rash all over her that was itchy and awful, I couldnt even hardly walk and could not hold my girls, Billy had to take off work to drive me to get a treatment and then our van was making this terrible sound so he had to take that in while going to get new mattresses for the girls (thats another long story) Thanks again to some great friends for helping us get some great ones!! (The Paddens) Billy was doing this all on his own and I was so sick I was worthless. Again, I do not know how Billy does all this. He is so strong, yet so thankful for times when we all can fall down into the lap of our Lord and let him take our brokenness- which we both have done alot this week. Yesterday was another pain-filled, nauseas day but we made it!
This week the ball is moving on all we are working on…setting up our non-profit called Let’s FIght Lyme, meeting with a BFF of mine, Brit Elwell who is my manager/organizer/assistant (ha) She gets things done and she keeps me on track! Her and Nate have been helping us in so many ways with letters to foundations, organizing plans, etc. We are so grateful to you guys! I may be the director of this thing only because I am the one with this nasty disease but you truly run it girl!! 🙂 I love you! I also met with another friend who I have been training with for about 5 years who is doing out logo. She is the best and so gracious. Thanks Amanda! Then there’s Matt who is my film “guru” He is pure WONDERFUL! The nicest guy, excellent at doing these documentaries and is working on our trailer. A million thanks to all of you! And lastly, to all of you who pray for us, cry with us, hug us, sit with us, and just live through this with us. Today we are meeting with Jed, another lymie who is so smart – he used to be a pilot and had to quit due to Lyme but he anything and everything and fixes everything. We are trying to get a RIFE machine (or Billy and him are going to make one) what are they? Very hard for me to explain but one of my treatment plans that has been helpful to thousands of Lyme patients. The problem is you need to do it like 5 times a week, along with the sauna..so we are trying to work that out! If only money grew on trees! God provides and we are so blessed!
“For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.” Isaiah 41:13
Another new and very silly, strange symptom that brings stupidity to my life is brain fogs. I have always been one to have so much going on in my brain that it is easy to do…but it is getting worse. Billy finally told me that it is hard to have a conversation with me at times because I will completely lose what I was talking about, or switch from one thing to the next in the middle of my sentence. I will forgot what I just walked into the pantry for like several times, I will call someone and say um, HI…I don’t remember what I was calling to ask you; and then sometimes I am fine! So, sorry if my writing starts to have issues as well!
I just got retested for my CD57 count and anxious to see if they are up! We have to test for co-infections and go from there. Again, I would say what is hardest for you guys reading this blog and walking through this with us not really “understanding” Lyme disease. Some days I am more normal and only a few symptoms that I can hide very well and then the next day I am stuck in bed with debilitating fatigue or pain and it is like what in the world. Very frustrating for us and I can only imagine those around me alot!
Wish I could reread everything we are learning about it and researching because it makes sense, confusing and so much affects your body when you have Lyme so it is complicated but pretty insane! And what is sad, is that there isn’t good testing, good up to date research and much controversy! Please pray God will use us to help with all of these issues!
Yet, we have to remember my first fight is for my body! To battle through this each day. My immune system is very compromised along with alot of other things too. Lyme can lead to many other issues and so we are trying to go get tested up at a University in NYC to get some more answers and figure more things out. I will keep you posted on that!
Wow, I just realized how much I wrote! I really need to try to update this thing everyday! I skipped alot of my symptoms and challenges this week but this is good for now!
Loves for ME!!