We are going to take a little break today from information overload and share with you our trip to Disneyland this past Monday; a group of Lyme survivors planned the first annual Disney Lyme Day. We were blessed with friends who could sign us in for the day to attend the event. I took Paige and all her siblings and a friend and her family met us there. All in all, it was a wonderful day.
When we first got the Lyme diagnosis for Paige someone told us, ‘find a local support group, you will need it. This is a long and lonely road and you will want people around you who know what you are going through.’ I didn’t heed this advice. I figured as a homeschooling, stay at home mom to 6 kids, with not very many in real life friends, and family who is all at least an hour away, I knew what it was like to be lonely and experience life outside the norm…I should have listened. This is a long, hard and lonely road. It would be nice to have people to talk to that understand what we are going through. Someone for Paige to talk to and share her frustrations and fears with.
It seems when your child has diabetes people at least know what it is, they may not know how different it is from Type 2 diabetes, but they know your child is sick. When your child has cancer, there are charities, hospitals and groups that help you. Everyone knows what cancer is and they are sympathetic and supportive. When your child has Lyme Disease most of the world doesn’t even know what it is and if they do, they know very little about it. They have no idea that it is incurable, how devastating it is or how long and expensive the treatments can be. They assume you take some medicine (that insurance pays for) and you get better. It is hard for people to understand just how devastating this disease is, not only for the patient, but for the whole family. Your life as you knew it before, ceases to exist. It now revolves around doctors’ appointments, medicines, treatments, severe diet changes and overall lifestyle changes. You long to have contact with someone who ‘gets it’, who understands the challenges you face just trying to survive each day.
Lyme Day was a little bit of that. Paige was able to talk to a young girl who is 15 and currently going through treatment for Lyme. She was just in the hospital and showed Paige the bruises up and down her arms. It was great for Paige to see her standing there and not in a wheelchair, it really gave her hope. I talked to her family members about treatments, protocols, setbacks and the joys they are experiencing. To talk to someone who really ‘got it’ was amazing.
We also got to talk with Aimee; she is amazing. She was diagnosed last March with Lyme and like me, she wants to scream from the mountain top about Lyme and bring awareness to EVERYONE. She and Paige talked for a while and she shared some of her symptoms and Paige’s face lit up…you see, she has the same ones. The ones where your arms just want to do their own thing and fling around aimlessly, or when your face starts to contort with tics that you can’t control and the terrible muscle control and strength that leaves you in a wheelchair. Paige and Aimee are dealing with so much of the same thing and it was great for Paige to see how a year can make such a difference. Now don’t get me wrong, Aimee is still very sick, she is still undergoing very aggressive treatments, but she was there, smiling and standing. This was very hopeful for Paige.
Aimee has since reached out to Paige and posted this to her Facebook page this morning:
Hello my Lyme Warrior Friend 💚
I wanted to share with you how much seeing your strength on Monday moved me!! 💚
I know it took everything and more to be there with us all and it meant so much to myself and all of us seeing your positive spirit and endurance during the hardest part of this disease.
Paige keep that smile my friend and share with others your story and strength. Keep showing those spirochetes who’s boss even on the lowest of days! NEVER GIVE UP! Keep looking up to who gives us the strength and power to keep going- he ALWAYS supplies us with what we need, just keep asking him to show you the light even in the darkness ✨
Much love to you Paige and the support team around you 💚
Keep fighting! Keep HOPING and PERSEVERING with ENDURANCE (Romans 12:12) 💚✨
Much love, Aimee 💚💕💚
Several other people came up to talk to Paige, to give her encouragement, to speak hope and life into her, to let you her know that one day she WILL be better. I stood back watching all of this take place with tears in my eyes. These people are like Paige, they ‘get it’, they understand her pain, they know hard it was for her to be there physically and they all took time to encourage her. I can tell her every day that she is awesome, she is a fighter, she is strong, but it doesn’t compare to when these Lyme Warriors say it. I could see in her eyes that she was listening and taking in every word they spoke to her.
The ‘Lyme Guy’, he may have been her favorite. He was so full of life, always smiling and bouncing to and fro. She really didn’t want any pictures that day because she felt like she looked awful, but she asked for a picture with him.
When it came time for the group photo Paige told me she wanted to stand, of course as her mom I didn’t think that was the greatest idea since she didn’t have control of her legs that day, but she insisted. We pushed her over to the group and Chloe and I helped her stand, everyone cheered and several were crying, they knew not only how important this was for Paige, but also how terrible difficult it was. Again, I was crying.
As awesome as these couple of hours with other Lyme Warriors were, they didn’t come without side effects. It really took a lot out of Paige. Emotionally and physically. We spend the rest of the day walking around Disneyland and trying to get on some rides, but that turned into quite the challenge. You don’t realize the challenges the disabled face until you are faced with those same obstacles. We learned quickly that it wasn’t as easy as just waiting in line and getting on a ride. You needed to go through the handicap accessible line and due to the sheer volume of people that day, those lines weren’t always available, and if they were you had to return at a preset time to wait in the line. It was very frustrating that more accommodations weren’t made for those with disabilities.
Another challenge was how Paige couldn’t tolerate the rides. Paige is hyper sensitive to sounds, light and vibrations now and some of the rides triggered a response that wasn’t pleasant for her. She rode through It’s A Small World with her eyes closed and her ears covered. There was a frequency or tone that she could hear that was really messing with her head. On Pirates of the Caribbean she had an episode and was out cold. She was unresponsive, her eyes were no reactive and she couldn’t lift her head or arms. When the ride came to a stop, her brothers had to lift and carry her to her wheelchair, as she was still out. It took nearly an hour for her to come around and be able to respond to us. This is when we realized, between the lights, sounds and vibrations, that rides just weren’t her friend and we would not take her on anymore.
What once was no big deal, riding a favorite ride, not triggered a response in her body that she couldn’t control.
By the end of the day she was exhausted. She said that every part of her body hurt (not ached like she normally says), she had a headache, she couldn’t eat and she was losing control of her limbs. We when we got to the car she started dry heaving and couldn’t stop gagging for quite some time. She was unable to eat dinner or drink anything.
Tuesday, she barely left her bed, she would come out to take meds when they weren’t brought to her, but that was about it. She was just emotionally and physically exhausted. Wednesday was a little better, but not by much. She still can barely eat and only emerges from her room at medicine time. Her blinds are tightly closed and she is curled up under a blanket.
I am not sure how long it will take her to fully recover from this one day, but based on past episodes I would guess nearly a week.
Below I have written out a little bit of what Paige goes through when she pushes herself too far, most of us can’t even begin to understand the hell her body is going through. Maybe reading this will help you understand, if even just a little bit.
The difference between normal tired and too tired to breath
When you used to stay up too late in college or didn’t get much sleep while caring for a newborn, you would wake up tired. You may feel glazed over or foggy the next day, but this was a ‘normal tired’.
‘Sick tired’ is a whole new ball game. Being tired from a chronic illness can’t be snapped with a quick cup of coffee or a power nap. It is a tired that is crippling. Your muscles aren’t just sore, but they literally cannot function. You feel like you are cuffed to your bed and just moving your head takes more energy than you can muster. Standing up and getting out of bed feels like an impossibility.
It is really hard for someone who hasn’t had/have a chronic illness to understand this kind of tired. They may say they are tired to, but they are a normal tired, the kind that allows them to function normally. When someone with Lyme is tired, they can’t function normally. They can’t just keep going about their normal routine, their body just doesn’t allow that.
This is the tired that Paige experiences, the kind where it takes every ounce of energy and will, just to get from her bed to her wheelchair or walker. And some days, she can’t even do that. Yesterday I heard a noise in the hallway and when I went to check it out I saw Paige scooting from her room. When I asked her what she was doing, she said she couldn’t even stand up to get to her walker, so she rolled out of her bed and was scooting to the kitchen.
After a long day, like the one at Disneyland, this fatigue is even worse. Being in the sun, putting on a happy face and not being able to rest like normal, almost makes her body shut down. She has no control over her hands or arms, the chest pain intensifies, the brain fog is like that of San Francisco, that locks in the whole bay, and just holding her head up takes more energy then she has. When she speaks, her words are at a whisper and slurred. She cannot put a complete thought together. She is overly sensitive to lights and sound and we must keep all the blinds closed and kids quiet. Recovery from one day can take her a week or more.
The sun is a good and a bad thing for Lyme sufferers. The Vitamin D is good, it helps boost the immune system and is great for mood lifting. But it also causes an autoimmune response in the body that wipes the patient out. If the person is taking antibiotics it can make this sensitivity to the sun even greater. For Paige, since she is not on Doxi, her response to the sun isn’t due to medication, she just can’t tolerate it well. She is super light sensitive, even with super dark glasses the brightness of sun causes headaches and eye pain. It seems like this sensitivity gets worse the longer she is in the sun. Paige also can’t tolerate the heat anymore. We understand that both of these are caused more by one of the co infections, Babesia, then the Lyme itself. We learn more about Babesia when we talk about co infections, but headaches, light sensitivity, the inability to regulate body temperature and ‘hot flashes’ are all tell tell signs of Babesia.
Thank you for reading this latest blog post, I hope it has given you a little glimpse into what Paige (and everyone around here) go through on a daily basis. Please continue to pray for Paige, that she will recover fully from our outing and that her body will continue to heal.
If you would like to donate towards Paige’s medical treatments, you can do that here:
If you want to send something to Paige, you can view her Amazon wish list here: