Overwhelming ( I think I have already used this as a Title but that is what it is!

Overwhelmed is the word of the past couple weeks!  Some in amazing ways and some in more difficult and painful ways.  Let’s start with the incredible blessings –

 Overwhelmed with LOVE!

1. The love and support of our dear friends!!  Thank you Elwells, Oros & Mitchells for surprising us with the “Let’s Fight Lyme” Benefit.  It truly has humbled us and taken all our pride yet how overwhelmed and thankful we are for how God provides for our every need.  It still brings tears to my eyes every time I think about it and have a hard time talking about it as we just feel so undeserving and do not like to be in this position but we are; so we are facing it with grateful hearts.  Thank you too for all of the others helping throw this benefit of a blessing!  We are forever grateful and hope we can do this for someone else one day!  

2. Prayers…It is something when people say they will be praying for you or over you and you trust they are.  Then when you hear your name being prayed over in a church service (Thank you Pastor Sharrett) and you heard through the grapevine that my name is prayed over every Sunday out loud and daily by hundreds of people, many who don’t even know me personally; the power of prayer becomes more and more alive!  I send out texts to a few close friends or family members here or there if I am having a bad day or just need extra prayer and then I learn that those people then send out my prayer needs to their prayer group which in turn again becomes hundreds of people praying – I mean talk about a community of love!  

Overwhelmed with Hardships

1. Again, we are finally facing issues in our house (mold, air problems, etc) and I am scared!  It has been one of those things that I just don’t want to step into or deal with!  There have been several of my lymie friends that have had to move out of their homes or spend thousands and thousands of dollars to make it livable for a lyme patient.  Mold is like kryptonite for people with lyme and we have had a few leaks in our home the past 3 years.  So we shall see!  

2. Another step I am having a hard time facing is getting my girls tested!  I know God is in control and has all of us in the palm of His Mighty Healing Hand but I don’t think I can handle much more right now.  I know I will feel so guilty even though we had no idea at the time if they come back positive yet many other family’s walk this road together.  And we can too!  We will just need a whole lot more prayer (if only we could get jobs praying for others) 

3. Every patient handles supplements, antibiotics, treatments different so it is very challenging trying to figure out what is best for me.  It is great to hear what worked for some and what worked for others but still there is so many options and things to try and it is just overwhelming!  We are trying to re-evaluate our next steps or what we will continue, etc.  We need to figure out if I have any co-infections, which is another thing I just don’t want to walk into as it just makes it more complicated!  

4. My pain, I am beginning to have terrible pain in my knees…like really bad!  Usually in the evening and bad enough that I cannot walk up and down my stairs.  I had pain in my knees back in high school and had to quit cheerleading (yes I was one) and track/cross country in junior high.  They said it was patellar tendinitis so not sure if that was what it was or if I did get my Lyme Disease way back when I was a little girl in Indiana and that was a symptom.  We will never know but just scary when we live in a 3 story townhouse and have lots of stairs.  I love my house and my neighbors and do not want to even think about not living here!  Also have been having lots of fatigue, no energy and shortness of breath here and there.  Again, just not knowing what each day will be like or even hour by hour it is a bit unnerving.  

I was sitting here writing this crying and now I am giggling as I can only imagine how crazy and confused many of you are!  That is okay because Lyme Disease is CRAZY AND CONFUSING so that makes my blog a bit that way too!  Literally, I would share more information on the actual disease and I will start doing that but it is like learning a new language.  Very complex!  In all this blog brings me I wanted to say thank you for letting me share, being open and real.  It is the STRENGTH and JOY of the Lord that I am able to get up each day and keep going; I am human and I am emotional and I am scared.  Every time I write on my blog I gain a breath of fresh air.  It is like my heart has grown fuller.  My fears ease and I feel strong!  Because I have God on my side and thousands of supporters and friends on my team!  Thank you all so very much!  I wish I could tell you in words how thankful my heart is for all of you!  

With Deep Love, Ann 

 

planes, wheelchairs and DC oh my!!

 Yep you read it right…we had the opportunity to fly to D.C. to celebrate BIlly’s cousins graduation and visit with the family!  We had a wonderful trip, it was even better for me anyways as I got the privilege of riding in a wheelchair!  We decided we should get one so I wouldn’t be stuck in the hotel all weekend as they had planned to do some sightseeing and just walking around at the airports, etc. would be alot for me.  

I am learning more and more that my stubborn push myself to the limit mind set is not the best for this thing called Lyme Disease.  So, I have adapted and decided that it is okay to get help when the help is available.  My wheelchair and I became very close this weekend.  It isn’t really mine but we were stuck together like glue during our visit.  Of course it would not be a fashionable addition by any means so I brought what I could to help bring it to life a little more…a scarf with bright colors and flowers attached to the back!  (pictures are below) 

The first time I sat in it I am not sure what my initial thought was, other than…wow, this is definetley a different view down here.  I love people watching at the airport anyways, and this was a little different, so it mixed things up!  I realized that most people aren’t used to seeing a “younger” girl in a wheelchair.  (Plus, they were of course drawn to my hot chauffeur) I got many interesting looks, got many smiles or stares as they were trying to figure it all out.  I just smiled and let my humbleness shine or hoped too!  I even got a few comments like, “wanna race” from an older gentleman and a homeless lady downtown asked if we could switch…my heart wasn’t sad like I thought it would be…instead I felt a new sense of life – a new sense of appreciation – a new sense of connecting with people I never knew how to connect with, not wanting to show them I felt sorry for them.  Honestly, I am thankful for all these new experiences and roads God is taking me on to show His love to so many more people that I never would have been able to beforehand.  It was difficult, I’m not gonna lie…not being able to have the independence, having someone push you all the time, I for sure would need ALOT of prayer to be fulltime in a wheelchair.  I do not know how people do it!  Cindy Moore I have a new love for you…you are truly an inspiration and a role model in so many ways!  For those of you who do not know her, I hope you get to meet her!  It was such a nice trip just to be able to do everything with everyone as I could not have without the wheelchair.  It is crazy when you think you should be able to just get up and walk…but your feet and fingers and hips and knees hurt so bad or just don’t work properly that you can’t!  That would have for sure made me depressed if I was stuck in the hotel all weekend – I DO NOT LIKE TO MISS OUT ON ANYTHING!! So thanks Uncle B for arranging me to have a wheelchair!  Billy, was funny…he was pretty set on him pushing me instead of anyone else until we were at George Washington’s Home and we went all over the place, gravel roads and he was in flip flops…poor guy!  So they took turns…I still get to give people a workout even when I am not personal training them!  

Overall, the trip went really good!  We got to take naps every afternoon and that was so helpful to my health!  I would say the one thing I did not like about the wheelchair was that it draws more attention…I don’t like to draw attention to myself but God is continually humbling me in ways I never would have imagined!  

Again, we are feeling very overwhelmed!  Overwhelmed as to what the next steps should be, the next treatment protocol, the mold testing that needs to be done in our house, the girls getting tested, trying to work on the documentary, a non-profit organization, keeping up on all the new research coming out, trying to talk to other lymies,  loving and serving our friends/neighbors/family/strangers, working in research for better testing, finding sponsers, etc.  It is alot yet we have “jumped in” and God is carrying us through each step, each day and each door.  It is crazy how big this world of lyme disease is and how many people we have already met or talked to or are going to meet up with and yet how each person has a story that needs to be heard.  I am going to put this poem in this post that was in my Lyme Times magazine from a little girl names, Sally Jordan.  

My Time with Lyme

I never know when I awake which part of my body will ache, 

My words are jumbled my minds a blur, how I wish there was a cure.

My joints are stiff, my head is throbbing.  My life, the Lyme is robbing.  

Why didn’t my doctors here see what was deep inside of me.

I felt like they didn’t care about all the symptoms I had to share.  

Sometimes I can’t even go to school because the Lyme likes to rule.  

My body has felt like this for years, I often go to sleep in tears.  
By God’s hands, I met Dr. Jones.  He’s me hero he didn’t leave me along.” 

I thought it was sad, sweet and so true.  I don’t want people to think us Lyme patients are against doctors or insurance but we just feel like this little girl put it!  There needs to be more research, more awareness, more testing and updated guidelines for Lyme Disease.   This is a typical day that we lymies face, never knowing if it will be a good or bad day – and how bad at that!  Please continue to pray that God will continue to open doors so that we can be used to help!  

Please don’t hesitate to contact us if you have more specific questions or would like more info!  Emailing me is the best way as some days talking on the phone is just too much and takes all my energy!  But would love to hear all of your voices too! 

Lots of love, Ann ImageImageImage

 

 

fighting

My prayer for myself is that I will have the strength each day to commit and complete this mission God has given to me/us.  I want to say as Paul did in 2 Timothy that I have “fought a good fight, finished this race and have remained faithful” to the Lord, my family and friends.  I know this disease that I have is going to be much bigger than just telling others “I have Lyme Disease” or trying to just get my body healed.  God is WITH me and FOR me and is NOT FINISHED!  Honestly, I have a huge excitement to see how the Lord is going to work through this and touch people’s lives; not at all because of me or my story but because of what He is doing in it, in us and through us.  

This week has been filled with incredible memories, a thankful heart and many discouraging moments too.  But, don’t we all in life!  However, for some reason God has given me a desire to write mine and share it to anyone who may fall upon it.  I hope to inspire, encourage, and uplift others.  I hope to show you that God loves you more than you will ever imagine and wants to walk daily with you.  I hope to show people through trials and brokenness that JOY is still alive and HUGE!  

This week we celebrated Emersyn Rose as she turns 2 on June 11.  We had a fabulous time and oh how lucky I am to have such incredible friends to help make it all happen!  She is a delight to us and despite her 2 year old typical toddler attitude she is so silly and precious.  Then my most amazing husband had his promotional ceremony as a Batallion Chief.  We couldn’t be more proud of him!  And of course we had to have a celebration after!  It was a blast and so much fun!  Through these exciting celebrations there were lots of tears, lots of frustrations due to my body not working as I’d like it to be but God provides others to help…to help with the girls, to help with food, to help clean, to help cover us with prayer, to help encourage us and love us!  THANK YOU ALL!  

My energy level is very very low today and how thankful I am for family to be close to drive me to my treatments and neighbors and friends to help with the girls!  My hips and knees hurt so badly yesterday I felt like I needed replacements…just such an odd disease!  Never know what is coming or how your day will play out!  But that is actually how all our lives our…but just gets more uncomfortable when your control becomes very limited.  Yet probably good in a way, again puts that word PERSPECTIVE into meaning!  True and lasting JOY into meaning!  

SO excited to share more and more with you eventually through the documentary, and my book!  We hope to have the trailer done very soon and plan to launch it on July 14th!  In the meantime we are overwhelmed with many things: 

1. Lyme Disease 

2. The love and support of family and friends that is pouring over us 

3. How much the girls can see into all of this, good yet hard for us all at the same time 

4. The doors that God continues to open through me having lyme disease 

Thanks for reading my blog and sharing in this journey with us! 

Many hugs, Ann Image

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This is us as we were singing to Emersyn, she loved it so much that she kept saying “gain” (again) (again) so we ended up singing to her a couple times!  It was adorable!! 

 

 

rough and tough

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.  

My challenges: 

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!!