When someone told me that dealing with Lyme was hell on earth and they wouldn’t wish it on their worst enemy, I thought maybe that was an exaggeration. I am realizing everyday that it was no exaggeration. Dealing with this disease is HELL, for all involved, but mostly for Paige.
In late January Dr. Barton (the Dr in Ripon) started Paige on a whole list of supplements to try to heal her body and organs. We were told when she started these she could get worse before she got better and we are starting to see that some of her symptoms are in fact getting worse. We aren’t sure if maybe we need to tweak the dosages or if it is because they are working and the Lyme is in overdrive trying to stay alive. Whichever it is, Paige is struggling.
My husband and I are traveling to Ripon this weekend with Paige to meet with Dr. Barton. We are hoping that she can give some suggestions as to what to do to help Paige be a little more comfortable. The trip to Ripon is over 5 hours, we are really hoping that Paige will tolerate the trip OK. It is often times hard for her to sit for a length of time and the car makes her migraines worse. Please pray that she does well.
Here are her latest journal entries, this gives you an idea of what she is going through in her own words:
February 1: Chest pain-YES!!! My chest felt like someone was sticking a knife in it all day. Tired- YES! Dizzy-yes I felt like I was floating all day. Lightheaded- YES! Headache-light today No nausea or stomach issues but I didn’t eat much. Activity-worked out
February 2:Chest pain-not really 🙂 Tired-YES Dizzy-YES Feeling-when I close my eyes it feels like everything fades away Headache-no Stomach-GREAT Activity-workout with my family. Meds- pills have been fine Note-Gluten free bread is NASTY!!
February 3: Chest pain-no Tired- YES!!!!!! Dizzy- kinda Feeling-same as yesterday Headache-yes stomach-ok activity-worked out a little Lightheaded-yes, some off and on
Used the suppository and an reacting fine to it
February 4:Chest pain-slight Tired-Yes! Dizzy-Yes! Feeling-fine today Headache-YES!! Lightheaded-yes Meds-I hate pills and suppositories
February 5:Chest pain-yes, off and on Tired-YES! Dizzy-kinda Feeling-like I was hit by a truck and dumped at the bottom of the ocean Headache-YES!!!!! Lightheaded-YES! Meds-I am over these pills already
February 6:Chest pain-slight Tired-yes Dizzy-kinda Feeling-like a blob fish look Headache-YES!! Acvitivy-none Lightheaded-YES! I blaked out at least once and slumped to the floor
February 7: Chest pain-YES! Tired-kinda Dizzy-kinda Headache-YES!! Stomach-fine Activity-none 😦 Lightheaded-yes
I had a funny spell at dinner, my face felt hot than itchy. My skin burned like I was being bit by a thousand bees!
Just because I thought they were cute, here are some doodes that she adds to her diary entries.
I know by just reading this you can’t since the severity of her pain and issues, she seems to downplay them some days because she knows they can get worse down the road. Several times over the past few weeks her chest pain has been so bad she falls to the ground and has trouble breathing, a few times it was so severe it made her cry. Her dizziness is almost constant anymore and she has to use the furniture and walls to walk around. She seems to be light headed more frequently and she is also starting to get tunnel vision and blacks out. While I try and give her the space she needs as a 16 yr old, I also have to keep an eye on her; I don’t want her to black out and fall and get hurt. We walk a fine line around her of being protective but not suffocating. It is a daily balancing act.
Specific Prayer Requests:
1. for safe travel this weekend as we drive to meet Dr. Barton
2. that we can find a local Lyme Literate doctor
3. for complete healing for Paige
4. that we can have some good days where we can go do some family outings with all of the kids
5. for the Lord to provide financially for all of Paige’s meds, supplements and care.
I have been asked how people can help and first and foremost we ask for your prayers. Those are what are our strength lately. Cards/pictures/notes are also good. Paige loves getting mail and a simple card letting her know how many people are praying for her is a huge boost of encouragement for her. Below are some financial needs for those able to help with that.
1. here is an Amazon wish list of things we need or would be nice for Paige
2. gas gift cards-our current doctor is over 5 hours away and we will need to see her every other month or so. The Lyme doctor that we hope to see next is over 6 hours away. So gas cards always are good.
3. Whole Foods, Sprouts or Aldi gift card-Paige is on a strict gluten, dairy and sugar-free diet as well as all organic. These gift cards will help a lot in providing her with the foods she needs to promote healing. 4. PayPayl-only because I was asked firstname.lastname@example.org