Living La Vida Lymie

Living La Vida Lymie

Living life on Lyme’s Terms is Not so Funny Sometimes. As any self-respecting Lymie knows, Living La Vida Lymie can be a major pain in the everywhere sometimes! Both Jess and I seem to be on the same Lyme cycle from hell. So, this basically means we feel like triple shit about every 3 weeks, as opposed to just lousy. I HOPE you may have noticed a LACK of our podcast this week due to her hell directly followed by my own. As for me, I was enjoying a rare visit with my sister hours before Lyme reared its ugly head. Even though she and I only live 5 minutes apart, we do not get to visit often due to the demands of life, children and illnesses. We chatted and vented about our recent life stories and I shared a snapshot of my symptoms. As Lymies know, sharing should be done in limited doses due to the general eye rolling and change of topic that often follows. But she just listened and then asked if I was ever going to get better. I was very grateful for her interest.

Given that I have been pretty sick for the majority of the past 4 years, I know how rare those moments of support are. So, I decided to document and share how late stage Lyme has altered my experiences for just the past few days in hopes educating people in honor of Lyme Disease Awareness month. I hope that if people become more aware, they can support their own Lymies and Lymies can realize they are not alone. It is easy to look at a Lymie and not think of them as sick on their good days, and even on bad days much of their suffering is not visible. Every aspect of my life has been impacted by ticks. Each Lymie will have different symptoms depending on individual health issues, length of time undiagnosed, tick related coinfections and more. I am inviting you to live in my skin for a few days and share a small piece of my Lyme journey. I have late stage Lyme, Bartonella, Babesia, Rickettsia, Mycoplasm, and parasites, as well as an immune system that abandoned ship long ago.

So, my past week overall has not been good, and I could tell hell days were immanent. Then, when Jess texted about her own downward spiral I knew I was screwed. I was tiring more easily, and my left leg had really been sore from my hip to my ankle. I was getting sad and frustrated more easily. Both my mental my processing and motor skills were slowing down. On Saturday night, my husband and I decided to watch a movie but my leg muscles and left hip were too sore to lay comfortably. They also felt like they constantly needed to stretch. Then, Bartonella decided to join the date by giving me intense shin bone pain which lasted for 2 hours. It also made me urinate about 4 times during the film which does NOT promote cuddling. I gave up and went to sleep.

On Sunday morning, I felt a bit better as happens often after rest. I got sad when more of my hair fell out during normal brushing-soon I will look like Morgan from Criminal Minds. So, I thought accomplishing something would lift my spirits. Even though it was raining, I decided to take advantage of my husband’s RARE offer to skip work and help with the yardwork. I literally raked a small amount of leaves for 2 hours. I started getting bad traveling joint pain, so I went in the hot tub. The heat helps my joints, but I guess I stayed in too long. Too much heat can cause a die off and Herx reaction. Within hours, the curtain came down. This is what I call my extreme fatigue associated with Lyme. When it hits, I have no choice but to sit or lay down.

I was experiencing POTS just by making dinner, so I ended up back on the couch. I was under covers with a heater on next to me, though it was 60 degrees out. My neck and chest was hurting from Lyme. My Bart hip and shin pain had returned with added edema from Ricksettia. I tried to distract myself with tv but My Babesia felt left out and decided a headache, and eye pain would be good additions to the Tick Symptom Salad appetizer. Then, Lyme really kicked in full force. My hands and feet were burning hot, swollen, numb and tingling. My left face was numb. I had red streaks appearing from Bart and my left eyes was drooping. I went upstairs to put on pajamas and get comfy while couchbound. I went to take one of my million medications when my hand spazzed out as it likes to sometimes. So, of course, I dropped my half-inch high bottle of drops that cost $80.00 and spilled over half of it. As you can imagine, I was not happy. I screeched at the bottle at the top of my lungs. My husband must have been feeling pretty lucky to be tied to me at this point LOL.

Yesterday, I taught for a few hours and spent some time with my son’s puppy. Apparently, walking around the yard was too much as POTS returned. He had to take her home as I became very tired quickly. I went back to my friend the couch to try and do some work online, only to realize that I had mixed up some students’ names in a Lyme fog. I ran my hand through my hair in frustration to feel the new set of red bumps that had appeared on my scalp. He came over o check on me and could feel how swollen my leg and hip were. I was limping as I walked. I know when to say when. I let my husband clean up from dinner and went up to bed, put heating pads on my hip, wrists and neck and proceeded to watch Criminal Minds.

So, today, on the first day of Lyme Disease Awareness month, I decided to blog to make people aware. I am feeling a bit better physically today, besides the persistent shin pain and slight headache. My eye is still droopy and I am still a little sad, mostly because my skin looks like that cat in the Put Me in the Zoo book with all my different Bartonella and Babesia spots. I don’t feel quite as much in a fog, though I did drive to my doctors for nothing because I missed my appointment by looking at April instead of May. But I am back among the living at least for another few weeks. Sadly, I never appreciated how good it was to feel normal when I did.

My story is not special. I will be putting together information to explain the answer to my sister’s question in a post soon. For today, this blog was my limit. I did not write it so you would feel sorry for me. I am quite capable of doing that on my own. I am hoping you will share my experience to spread the awareness of this life-stealing disease. The only way any of us can get better ourselves and prevent others from becoming so sick is through education. A student told me yesterday that her Biology teacher had them go for a hike in the woods. The teacher said they did not need to worry about ticks as it was not tick season yet. Gimme a freaking break. Here in Mass, we have been working on a bill to educate the public and local doctors for 4 years as of last week. We clearly can not wait for that to happen. My wish for today is that you be well, be Lyme smart, and help others be aware. Please and thank you.

 

 

 

6 thoughts on “Living La Vida Lymie

  1. Very powerful reading. I’m always amazed at how strong you are to be fighting Lyme and so many other diseases as well. We do need more research and some doctors who know about the updated Lyme research that’s already out there. Keep up the fight! It will be because of people like you that things will start to change.

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  2. It’s terrible knowing how awful you feel. I wish there was something that could be done and that someday you will not have to deal with these symptoms. I worry there is not enough research going on to develop new treatments and that more and more people will be dealing with Lyme in the future.

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    1. Thanks for reading and commenting! And you are right! There have recently been 2 more Lyme bacteria and 4 more tick diseases alone discovered-2 of which can be even more deadly. Hopefully the Lyme Challenge will raise some $! In the mean time, I fit all I can in good days!

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  3. This the first time I’ve heard someone explain in depth what they go through. I’ve tried to learn about Lymes so I would understand what Jess is perhaps going through. There is a lack of knowledge by most people and I’m determined not to be one of those folks. Please keep educating us when you can, I imagine when you’re feeling bad that’s the last thing you want to do. I want you to know, it doesn’t escape me how hard writing this is on your bad days. And I imagine on your good days you don’t want to think about Lymes, you just want to feel “normal”..I appreciate what you and Jess do to help us understand.

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