Day 3: FAR Clinic
This morning we woke without having slept much better than yesterday. While the new sheets definitely help, there's no place like your own bed.
In fact, when Elanda asked John what he needed to sleep better yesterday, he said "my bed." No one can argue that answer. We checked his Fitbit for his sleep pattern, and he only got 1 hour of deep sleep. The goal is 90 minutes, with the rest being light sleep and REM sleep. There is improvement to be seen here.
John likes a slow morning. While eating an Epic Bar, he was testing himself with the oximeter they gave us. His oxygen was reading 93-95, sometimes dropping to 92. At this rate, the devise beeps. Since we aren't real familiar with its use yet, John was having anxiety about the beeping. Anxiety is a challenging emotion to begin with, but it's not helpful with the oximeter. To get oxygen, your breath needs to be full and deep, and regular. With anxiety, your breath gets shallow and weaker. Imagine having a panic attack watching a thing flash and beep at you because your breath isn't good. Not helpful. However, John turned to his new Fitbit and hit the relax mode. Relax mode tells you how to breathe. Maybe it's silly, but 12 year olds don't typically spend time thinking about their breathing, so the Fitbit is pretty helpful. I also got out the canned oxygen that Matt gave us, and we got his oxygen settled at 96. Meanwhile, I texted Matt and Elanda to see if we should worry about this. We didn't know if this was a bum oximeter or if it was legit. Matt suggested that John is usually anemic. He's not used to getting a lot of oxygen. As long as he's not dizzy or light-headed, we should not be concerned.
Elanda met us on the lobby with his morning medical chewy smoothie. The taste isn't improving, and John is having a hard time convincing himself it's worth it. About the only thing that kind of makes it semi-ok is that he feels like he's grown since he got here. Elanda lent us her tape measure so we can take a measurement tomorrow. After choking that down, we headed for the gym.
The rhythm of each day is going to be about the same... smoothie, gym, hyperthermia, health pod, smoothie while PEMF, then G- force machine. Instead of covering the same thing each day, I will highlight the differences. Today's gym experience included chest presses and two arm rows, and then the treadmill. Here's a few pics of the exercises.
Nothing notable happened. John's oxygen flow was solid and his max HR was 153 (remember that ballpark max HR numbers are 220-your age.. so he could likely get to 200 without issue).
Hyperthermia was in the wetsuit again.
This time, the goal was getting his core temp to 102. It wasn't comfortable for John at all. Once he hit 102, he had to sit there for 10 long minutes. The only other change was the PEMF frequency was different, this time set of what Matt called the Tom Brady of frequencies. Apparently that frequency is good at everything and one everyone in this field is familiar with. We also added Rife too. Rife was set at 781 and a square wave.
Rife is something we had never heard of prior to Lyme. Google "Royal Raymond Rife." There's some info out there that explains that Mr. Rife, an inventor, figured out a way to weaken or destroy pathogens. Some say certain frequencies can be used to shake the lyme spirochetes and break it. There are companies that make rife or rife like machines including True Rife, Spooky2, Doug coils, etc. The science behind why it works doesn't make complete sense to us. In fact, husband Paul called the True Rife company and spoke to the owner. The owner was very reluctant to answer questions. Since Rife isn't FDA approved, they cannot be spoken of as medical devises, even though that is what people use them for. Mr. TrueRifeguy nearly hung up on Paul thinking that Paul was from the government trying to catch him selling his devise as a medical instrument. If you're not in the Lyme community, you might think this is all weird and tinfoilhattish. But all I can say is "once you get it, you get it." We wouldn't wish this disease on anyone, but most people simply don't get it. Back to the Rife.
John notes that at a frequency of 610, in 5-10 minutes, he often has joint pain, sometimes he gets energized and has a hard time sleeping, sometimes he has such a reaction that he can't do much the rest of the day. Lyme likes to hide in joints, so it makes sense when you irritate them with Rife, that your joints hurt. There's a widely known book in the Lyme Rife community by Bryan Rosner. He explains it and gives instruction of how to build your own, should you not want to pay the steep prices of the True Rife.
The rest of the day was the same. We got back to the hotel so John could take a nap. We got salads, Tropical Maui Chicken, from Cafe Zupas.
We love their salads, and John plows through the large salad after the hard work.
Right now, we are sacking out watching Property Brothers, waiting for Seinfeld to come on. It's a personal joy to me that my boys are enjoying Seinfeld. Patrick likes putting it on when we are together so he can hear me laugh. When there's chronic Lyme and Hashimoto's in John, Hashimoto's and adrenal issues with vitamin D and iron problems with Patrick and me, cancer in one dog... sometimes all we need is a good dose of laughter.
Thanks for all of you reading, supporting and praying for us. I can't tell you how hard it is to see your children's quality of life suck, to see his innocence lost, to see his sadness that he doesn't have normal energy levels. It. Just. Sucks. But we hope to make Lyme into Lemonade. We hope that by telling our story we can educate and give hope to others in our predicament.
In fact, when Elanda asked John what he needed to sleep better yesterday, he said "my bed." No one can argue that answer. We checked his Fitbit for his sleep pattern, and he only got 1 hour of deep sleep. The goal is 90 minutes, with the rest being light sleep and REM sleep. There is improvement to be seen here.
John likes a slow morning. While eating an Epic Bar, he was testing himself with the oximeter they gave us. His oxygen was reading 93-95, sometimes dropping to 92. At this rate, the devise beeps. Since we aren't real familiar with its use yet, John was having anxiety about the beeping. Anxiety is a challenging emotion to begin with, but it's not helpful with the oximeter. To get oxygen, your breath needs to be full and deep, and regular. With anxiety, your breath gets shallow and weaker. Imagine having a panic attack watching a thing flash and beep at you because your breath isn't good. Not helpful. However, John turned to his new Fitbit and hit the relax mode. Relax mode tells you how to breathe. Maybe it's silly, but 12 year olds don't typically spend time thinking about their breathing, so the Fitbit is pretty helpful. I also got out the canned oxygen that Matt gave us, and we got his oxygen settled at 96. Meanwhile, I texted Matt and Elanda to see if we should worry about this. We didn't know if this was a bum oximeter or if it was legit. Matt suggested that John is usually anemic. He's not used to getting a lot of oxygen. As long as he's not dizzy or light-headed, we should not be concerned.
Elanda met us on the lobby with his morning medical chewy smoothie. The taste isn't improving, and John is having a hard time convincing himself it's worth it. About the only thing that kind of makes it semi-ok is that he feels like he's grown since he got here. Elanda lent us her tape measure so we can take a measurement tomorrow. After choking that down, we headed for the gym.
The rhythm of each day is going to be about the same... smoothie, gym, hyperthermia, health pod, smoothie while PEMF, then G- force machine. Instead of covering the same thing each day, I will highlight the differences. Today's gym experience included chest presses and two arm rows, and then the treadmill. Here's a few pics of the exercises.
Nothing notable happened. John's oxygen flow was solid and his max HR was 153 (remember that ballpark max HR numbers are 220-your age.. so he could likely get to 200 without issue).
Hyperthermia was in the wetsuit again.
This time, the goal was getting his core temp to 102. It wasn't comfortable for John at all. Once he hit 102, he had to sit there for 10 long minutes. The only other change was the PEMF frequency was different, this time set of what Matt called the Tom Brady of frequencies. Apparently that frequency is good at everything and one everyone in this field is familiar with. We also added Rife too. Rife was set at 781 and a square wave.
Rife is something we had never heard of prior to Lyme. Google "Royal Raymond Rife." There's some info out there that explains that Mr. Rife, an inventor, figured out a way to weaken or destroy pathogens. Some say certain frequencies can be used to shake the lyme spirochetes and break it. There are companies that make rife or rife like machines including True Rife, Spooky2, Doug coils, etc. The science behind why it works doesn't make complete sense to us. In fact, husband Paul called the True Rife company and spoke to the owner. The owner was very reluctant to answer questions. Since Rife isn't FDA approved, they cannot be spoken of as medical devises, even though that is what people use them for. Mr. TrueRifeguy nearly hung up on Paul thinking that Paul was from the government trying to catch him selling his devise as a medical instrument. If you're not in the Lyme community, you might think this is all weird and tinfoilhattish. But all I can say is "once you get it, you get it." We wouldn't wish this disease on anyone, but most people simply don't get it. Back to the Rife.
John notes that at a frequency of 610, in 5-10 minutes, he often has joint pain, sometimes he gets energized and has a hard time sleeping, sometimes he has such a reaction that he can't do much the rest of the day. Lyme likes to hide in joints, so it makes sense when you irritate them with Rife, that your joints hurt. There's a widely known book in the Lyme Rife community by Bryan Rosner. He explains it and gives instruction of how to build your own, should you not want to pay the steep prices of the True Rife.
The rest of the day was the same. We got back to the hotel so John could take a nap. We got salads, Tropical Maui Chicken, from Cafe Zupas.
We love their salads, and John plows through the large salad after the hard work.
Right now, we are sacking out watching Property Brothers, waiting for Seinfeld to come on. It's a personal joy to me that my boys are enjoying Seinfeld. Patrick likes putting it on when we are together so he can hear me laugh. When there's chronic Lyme and Hashimoto's in John, Hashimoto's and adrenal issues with vitamin D and iron problems with Patrick and me, cancer in one dog... sometimes all we need is a good dose of laughter.
Thanks for all of you reading, supporting and praying for us. I can't tell you how hard it is to see your children's quality of life suck, to see his innocence lost, to see his sadness that he doesn't have normal energy levels. It. Just. Sucks. But we hope to make Lyme into Lemonade. We hope that by telling our story we can educate and give hope to others in our predicament.
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