help for lindsey's lyme and eliana's expenses

I have had a few people ask if there is any way that you can help out...and someone mentioned "Give Forward" to me.  As many of you know, treating Lyme disease is costly and will take years to heal...plus, we are now paying for Eliana's hospital bills and future therapies to help her little brain.  If you want to help give to our medical expenses (not covered by insurance), check out this link.  Thanks for caring so much!!  Love you all.


http://www.giveforward.com/thewheelerfamily

same old same old

So, I have had a rough few days (so has E for that matter)...maybe it's the crazy weather.  But, my fatigue is intense right now and my joints are in a lot of pain.  I went back to my Project Lymeaid blog and thought I would re-post my first blog to explain a little bit of what I am going through on a daily basis.  Now that E is more stable, I have really been trying to take care of myself.  I am eating healthy and exercising.  And, basically, I'm sad that I still feel so terrible.  Yesterday I just kept begging God for healing.  In the meantime, thank you for praying!

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September 19, 2010

My life and lyme....

I'm not sure where to even begin. It has been a crazy journey over the last 3 or 4 years (really 6 but who's counting)! My family went through an incredible amount of stress and pain about 6 years ago....and from that time until today, my body seemed to lose energy by the day. I remember telling my husband Chris that something was just NOT RIGHT. I had mono about 9 years ago....and this definitely felt like what I had experienced. I went to different doctors and was told that I was depressed and had anxiety. So, for six years I have tried every anti-depressant on the market....some made me feel a thousand times worse and then the one I have been on for 3 years has not made me feel any better or worse, so I have stuck with it. My body continued to gain weight....and a lot of it. For about 2 years, I have dealt with rapid heart flutters (which concerned me)....but had EKG's and nothing showed up. I was told it was just probably anxiety. Then, over the last half of a year my body began to ache. My joints would hurt in crazy places....my hands and arms would go to sleep and I began experiencing a ton of pain. I remember telling me mom about all of these latest symptoms and her telling me that I really needed another opinion.

I think I just got to a point where I had decided that I was dying. I know that sounds drastic. But, I kept telling people that I really didn't feel depressed. I just felt every single day like I had pulled an all-nighter in college and NO AMOUNT of sleep would make me feel rested. Doctors would do blood tests and everything would be normal. I was told "You're a new mom of a 3 year old....this is just how it is." I can't tell you how many times I walked out of the doctor's office feeling overwhelmed, defeated, and hopeless. I begged God for answers. So, in early June, I went to a different doctor and told her all of my symptoms. I just burst out crying and said, "Something is so wrong with me.....I feel like I'm dying." She listened....and started writing. She looked at me and said, "It sounds like you have Lyme disease....have you been bitten by a tick." WHAT?!!!!

Fast forward, the test was POSITIVE!! I have had it for years....the last time I remember being bit by a tick was at Kanakuk Kamps in 2001. I didn't know anything about this disease. The more I have read and researched....the more my heart is broken for the thousands of people suffering. It is a very misunderstood and controversial disease. For most people, if you take anti-biotics right after the tick bites you, you will be totally fine and okay. But, there is a percentage of us that have had it for a long time and it could take YEARS of treatment to "cure" the disease. Without going into a lot of detail, treatment is very costly and most insurance companies don't want to pay for chronic lyme disease. So, my prayer is simple....healing! And, I want others to understand the disease and spread awareness.

me and my bike

By now, you probably know that I struggle with anxiety. I'm pretty sure that started as a little kid. I am the opposite of Eliana in every way...she is not afraid of anything and I'm afraid of the simplest things. One thing that I literally have not done in 20 years is ride a bike. I crashed as a kid and decided I would never ride one again. Well, the times are a changin' folks...I rode a bike this week. And guess what...I absolutely love it!! I am very rusty on making turns, but I realize that I am a beginner. Also, I have to pretend I am not about to pass out every time I pass a person in our neighborhood...and my legs hurt so much I can barely stand. But, I'm really excited. I have never been athletic, and I have a child that could compete tomorrow in the Olympics. Tonight we rode bikes until 9 at night with our neighbors and it was the most fun I've had in a long time. I feel like I'm 12 years old again. Fear holds me back from really living...and I'm tired of it. I think this is the beginning of a new me.

remember when...

...I told you two days ago that things were going great (which I am still praising God for). Well, things have gone downhill ever since I posted my last post. Yes, everything could be way worse, but I've been struggling and E has fallen back into some of the pain/panic she dealt with before the hospital. Literally out of the blue today, she started freaking out in a way we've never seen. Was I the picture of patience?? No. Was I scared to see her rage returning?? Yes. In fact, it hit me a lot harder than I would have expected. I've seen it all before. I think I was a little in la la land thinking that we had hit the jackpot with her medications. I realize the meds are just one step in figuring out the bigger problem...and it is just helping her cope and remain more stable. The selfish part of me wants it to fix her. I want her whole and healthy. I don't want to watch her scream bloody murder and fight for hours. It makes me feel so helpless. Her little brain is damaged. That's a hard thing to swallow. On top of feeling helpless, I am in so much pain. It's hard to explain the pain that accompanies Lyme disease...just trust me, it's not fun. I want to sleep so that I don't have to feel the pain. I've said this before, but it is so hard to have a chronic illness and walk around in life like everything is okay. There are days I want to wear a sign on my shirt that says, "Yes, I look like crap. Please don't judge. I have Lyme disease." I feel such an extremely heavy weight of being Eliana's momma. I don't want to screw her up (I know I will). But, then, I know that I have to figure out how to take care of me too. It's just all pretty complicated. We both have "sicknesses" with little answers and many options of treatments. And, I'm tired. I am desperate for the Lord tonight...thankful He died for me and my wretchedness.

Amazing grace! How sweet the sound
That saved a wretch like me.
I once was lost, but now am found,
Was blind but now I see.

Love you all,
Lindsey

connecting the dots

I can't tell you how many days, Eliana and I would go outside to play...and I would come inside and try to distract her with something so that I could cry my eyes out. We live in a small neighborhood with tons of young families. We love love love our neighbors! They have been our community. There are 6 girls on our side of the street alone...and for the last 3 years, Eliana has been in our own little world. The girls (and Luke) would ride their bikes...play on the swing set...laugh...talk...try to engage Eliana, and our sweet girl could not go there. She lived in her own little world of fear and panic. But ever since going on her seizure and anxiety medication, I am watching little miracles happening left and right. Today, I opened the door and she clearly said, "Two packages momma." I didn't even know she knew the word "package." She will ask me if she can go outside and play with her friends. WHAT?!! I can't tell you how much that makes me smile. She is connecting. This is a dream I've had for her that I really thought might never happen and grieved only a few weeks ago like it would never happen. Oh me of little faith...every smile and laugh is a victory. Every new word coming out of her mouth is music to my ears. She is perfectly wonderful either way...I am just celebrating that my little girl is having fun! She is discovering new things. She is playing with people. She is talking to me. She can't count to 20 or say her ABC's, but she can ride her scooter like a person straight from the XGames. I love this little girl. So many things have been so mixed up in her little brain for so long, and she is finally beginning to connect the dots. Thank you Lord.