Millennial Lyme Life

08/18/2022

It takes a lot of courage to try a whole new routine when you're already in pain, especially when you know the new things you're going to try are going to hurt even more. The fear of pain is REAL, and like you said, it was keeping you and it kept me from moving, at all. The journey from disabled to working out is a huge step and an amazing accomplishment. And diet change is CRUCIAL for any healing with any autoimmune disease. Thank you for making this video to show not just other patients how much they can achieve and recover, but also show the general public, because it's impossible for someone who hasn't experienced it to visualize what it feels like. Thanks for making this.
And it takes just as much support emotionally. Thank you for all of my emotional supporters , I can't say that enough.

03/08/2021

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04/18/2020

It has been a while since we have posted. Lauren has been very sick and had a serious bout with pneumonia in January. We have made some strides, we believe, in a better diagnosis for her Lyme related illnesses. We believe that Mast Cells are to blame for many of her symptoms. The article below has been very helpful to us.

https://www.jillcarnahan.com/downloads/MCAS-Afrin.pdf

09/16/2019

Too many times to count... and this insomnia is very very different than typical, anxiety driven insomnia (it's terrible both ways insomnia is the worst). The reason it's different is because with chronic pain when you are awake, you're in pain. And tired. And have anxiety. If you dont have chronic pain at least when you're lying awake you feel tired and nervous and restless and probably have a headache, but you're not using all of your (small amount of) energy to lay there and deal with the pain. And if you sleep, the pain gets so much better, and we try, but it's not really a choice.

"Your definition of a rough night is much different than mine."

09/04/2019

I only watched a minute of this video and had to stop, just a little too real for me and, unfortunately, it's a life a lot of people are forced to deal with. It's terrifying.
(I didn't actually get to the part about the ma*****na lol ive tried it many times and has never helped me. On the contrary, it made me paranoid and also I got itchy all over my body so it's a big no for me)

08/30/2019

Hospital selfie! I came in last Thursday originally because I was having a bad flare up with my vasculitis and it was really painful so they kept me for a few days. Unfortunately while I've been here they have found that my white blood cell count is super low < 1.6 and they have to do a bone marrow biopsy and they didnt feel comfortable with me leaving. They tried to do the procedure on Wednesday but OMG even with dilaudid and lidocaine IT WAS THE ABSOLUTE MOST PAINFUL THING IVE EVER DONE it was traumatic 😭 they couldn't finish it because I was screaming so much so they set up a time for me to do it today under anesthesia so it should be fine (hopefully) 😬 we'll see. But thankfully the pain in my feet is better and I will probably be able to go home today!! Finally! It's been 8 days! I could use some prayers for the procedure today.

08/23/2019

Back again with another infection. This makes the 16th time I've been admitted to the hospital! This time I had a MAJOR reaction to the antibiotics they gave me. I've had plenty of allergic reactions before during the treatment, but this was the worst I've had. This was the first time I felt my throat get very itchy and harder to breathe, I was coughing a lot just trying to breathe. I am so lucky I have a great nurse who convinced the attending doctor to give me an extra benadryl IV and it helped a lot. It was really scary because it's never been that severe before and even with 2 doses of benadryl it didnt go away completely. But I'm going to get a new antibiotic, please pray that I can tolerate the new one, thank you!

08/22/2019

This man has been to our church many times leading worship and every time he tells us this story. I didnt even need to watch a minute of the trailer with the sound muted to know it was Jeremy Camp. He's amazing, in both his talent and as an inspiration, and so is this woman (his first wife) who died from cancer. I'll always remember when he told the story what his wife said to him when she was dying: "If my death brings even one person to God, then it will have been worth it." I wish I could tell her now that girl, you didn't just bring one person to Heaven, you've brought thousands 🙌 This message especially to someone who is sick like me is really really important to hear, and thank you for having the courage to share it.

02/03/2019

I am so frustrated and scared. I have been told so many things by so many different doctors that conflict with each other and honestly, I dont know if any of them are right or wrong. I dont know anything. No one knows anything. And now I'm in the ER because I was in a lot of pain and I felt like nothing was working and I had no other option, and I get here and am given medications that have worked before and they do nothing. Now my safety net of treatment for when it gets really bad has fallen through and is useless. I dont know what to do anymore or what else to try because we've tried everything. I cannot express how upset and stressed me and my family are. Now I feel like I do not have an emergency plan and am scared going forward because i dont have a way to deal with my symptoms when they get extremely bad. It's also impossible to explain my situation properly to doctors. I'm kind of freaking out, to say the least. I've exhausted all of my strength just coping with my pain and other symptoms and I dont have very much left.

01/11/2019

11/08/2018

I will be getting the initial trial device for a spinal cord stimulator put in tomorrow all prayers would be appreciated ❤👍🙏