So not it's February 2025
WTFLyme
And...Thank you Lyme.
Friday, February 7, 2025
Back Problems
Just a vent...
Wednesday, January 10, 2024
Seven Years Later
Seven Years Later
So I see it's been seven years since an update.
Well, I'm still here. I have made some really good memories with my family, friends and pets. I have had good days, and I have had bad.
I lost my Mom to pancreatic cancer. This loss has been so very hard. And in a way my brother and sister are gone too, they are still alive but I have lost them to addiction and mental illness. This last couple years has been hard on so many levels.
I have inherited a multitude of pets through everyone else's inability to take care of them and from two losses in the family, my Mom and brother in law. I just didn't' think I could take care of anymore pets so when my two 19 year old cats passed two summers ago and my Oliver who was over 19 and my blind poodle Missy, passed, I thought I would just be done with pets. It's gotten too hard for me to take care of them. But here I am, I have my mom's parrot and cat, and my sister's two dogs. I am doing my best to take care of all of them and I love them so, but man it's hard when you can't bend over or walk much. As I write this two of the dogs are sitting here staring at me whining, for what, I don't know. I guess it's time for treats.
Right now where I am at health wise, is basically just not well. My main issue continues to be my back. I just have back pain so bad that I can't sit at all. It's funny because when someone asks you to go do something with them, the first thing they always say is, "you can sit". That is usually the answer to anyone dealing with someone who is sick, they think that sitting makes things better. Well, with this back problem, I can't sit. At all. I can stand for about ten minutes. I can walk for about fifteen. I can lay down.
The problem is that laying down all day makes you weaker and makes your back hurt in a different way. It's just not healthy to not move around. So I work on finding a balance between moving around and laying down that won't hurt me or make me too weak. It's very hard.
As I wrote this, I have been in bed for almost two weeks, plus an ER visit for back pain and near fainting spell. They think I have food poisoning. I don't know what I did to my back, I just got this pressure in my lower back that started to grow. It hurts in my back and in my stomach. When I try to stand up my stomach muscles spasm and tighten. According to doctors this is because the muscles that spasm are trying to protect you from further injuring yourself. The part I don't understand is why no one can find what the injury is that my body is trying to protect.
MRIs show lots of bulging discs from the bottom of my spine to the top. Of course I have degenerating disc disease, doesn't everyone have this at 57, according to my doctors they do. I also have arthritis. In my scans there are lots of words like "minimal bulging" and "minor narrowing" and so my doctors just chalk it up to, "it's normal aging process" it isn't that bad.
But, my pain is bad. Very bad. It is life altering and making me isolated. I just want to play with my grandkids. I want to go on walks with my dogs. Last summer I did lots of these things, when I could. I pushed myself. But that pushing myself, while making great memories, takes a toll on my body. My prolapsed bladder/rectum got worse, my back pain got worse. I just don't understand.
So here I am in bed, another day writing this. I'm shaky from steroids and my stomach hurts from all my natural homeopathic drops, and I just still feel sick. No matter what I do.
I watch my "spiritual" videos all day to keep my mind in a good place. It's hard to do that sometimes when stuck in this sick body. But knowing one day I won't be stuck in it, is a saving grace. Not that I want to die. I want to spend more time with my kids, grandkids and pets. But I do believe after this life is something much better. Although I do believe we cycle through many lifetimes on this earth, so I just want to do this one right so I don't have to keep repeating "sick adventures."
To keep myself busy, I do a lot of art. My kids bought me an iPad with the Procreate app so I can lay in bed and draw! Best gift ever. When I feel well enough to drive, I go on "picture drives." I will pull over at the farms or my favorite lakes and fishing spots and just shoot away with my camera.
I keep myself busy. My body doesn't work but my mind does so I do a lot around art. I have a paranormal blog, a photography blog and an art blog. I have several Zazzle stores that I run and lots of YouTube channels. My busiest YouTube channel is called, "Happy Zazzling" and I had originally made it when I was trying to teach a couple other of my chronically ill friends how to make some passive income, as we are all broke.
So I was having a hard time explaining things in text over chat so I made a couple tutorial videos. Well now I have over 1,000 subscribers and that keeps me very busy. It takes forever to make a video, especially on my slow computer. and answering lots of messages daily.
But it distracts me from pain. Pain meds make me sick. I just can't take them, any of them. So I use distraction a lot. Keeping my mind busy. So art and photography and talking to others in the art/photography community is a Godsend.
So anyways, that is my update. That is what I am up to now. I hope whoever is reading this is doing well. See ya soon!
Here are some things I do with my art:
YouTube Channels
Wednesday, November 16, 2016
Accepting That I am Sick
I am tired of feeling guilty for being sick.
I am tired of feeling guilty that I haven't gotten better.
And I am sad. I want to watch my grand kids grow up. I pray that I can from wherever it is that we go.
Don't feel guilty for being sick.
Find those that lift you up, not bring you down, talk down to you, are condescending to you, even if they do it in the name of love, light or some other spiritual message.
It is not your fault that doctors, friends and family judge you and don't understand your illness.
Monday, October 3, 2016
C. Diff and Clindamycin: My Toughest Battle Yet
Ok I thought Lyme sucked, and I thought my TIA sucked. But this C. Diff battle is taking things to new heights.
And how ironic is it that I am one of the few Lymies that don't think long term antibiotics is the solution, at least not for myself. So after the first six years of going on them then going off again I took a more natural route and only did homeopathic or alternative treatments.
So skip ahead to my C. Diff experience...
Well about a month ago I went to my cousin's wedding. While I was there I experienced what I call one of my "Lyme episodes." I bent over to kiss my little granddaughter on the head and then the I got a shock like feeling in my head. Everything went gray and then when my vision came back my vision wouldn't "hold still." I can't say vertigo as it wasn't necessarily spinning. You know how when you watch CNN and the news scrolls by really fast at the bottom of the screen and if you try to look away you can still see it? Well it's kinda like that. It's like whatever I am trying to look at is moving, even thought it's not.
So my dad brought me back to the hotel room I was staying at. I sat in one position all night trying not to move, trying to hold my vision still. It makes you really dizzy.
Usually these episodes will affect me for about a day. After a week of not getting better, I asked my son if he would drive me to the ER where they said I probably have an inner ear infection, even though my ear looked clear. They put me on four meds, steroids, Clindamycin, Metclizine and Zofran.
If only I had known then what I know now.
Up to 30% of people who take Clindamycin get C. Diff from it. The doctor had given me a script for seven days. After five days on it I felt "toxic." I just stopped it on my own thinking it was just too strong for me. Please read: Clindamycin Can Cause Disastrous Diarrhea
About two weeks later it started. I started having diarrhea a couple times a day. At the time my little two year old granddaughter that I live with was also having diarrhea and I just thought I had caught a bug from her. A couple days went by and she got better, I got worse.
It got so bad I could not leave the bathroom. There were two nights I literally sat in the bathroom pretty much the whole time from 10pm to 6am. Not easy when sharing a bathroom with three other people. The diarrhea turned from normal diarreha to blood and mucus. The cramps were unrelenting. It honestly reminded me of labor, when you get that pain and urge to push, only there was nothing left of push out. My whole abdomen just endlessly burned and cramped and had a "full swollen" feeling.
I got so shaky and weak that I asked my son to take me back to the ER again. They told me I must have a bug, but my heart rate was high and I was dehydrated so they gave me one iv of fluids, then sent me home. The next morning I called my doctor and asked if she could give me a stool sample test. I thought maybe I had giardia. I didn't' even think about C. Diff at this time as I hadn't taken long term antibiotics or had any long term stays at a nursing home or hospital where I had heard of others getting it.
But the next day my doctor emailed me and told me I had tested positive for C. diff and there was a script of Flagyl sitting at the pharmacy for me. I took the Flagyl and on the third day started to feel some relief. I felt so much better that I was able to go with when my new granddaughter was born. I felt good for about three days after that and though it was all behind me.
But then it hit again. I woke up in the morning and had a stomach ache. I think I was in denial and kept thinking it couldn't be coming back. But by nighttime I knew. I tried calling my doctor but she was gone out of town and had no back up doctor so I headed to the ER once again. They put me on two more weeks of Flagyl.
I am about a week into it and soooo sick. I feel weak, and shaky and foggy and not normal at all. I feel toxic or poisoned.
I am looking into all natural treatments too. I read a bunch of patient forums that have helped teach me about some alternative treatments that doctors would never recommend and I am going to try it. I will post updates here as I go. I know there are a lot of others out there suffering from this too.
The things I'm trying are: Oil of Oregano, vit C, probiotics, kefir, protein drinks with enzymes, charcoal, clay, turmeric, essential oils and barley water.
We are wiping and sterilizing everything with bleach and hospital grade Clorox bleach. For those of you that don't know, alcohol and other disinfectants do NOT kill C. Diff.
C Diff is actually a lot like Lyme. It forms biofilms and spores when faced with antibiotics and waits til it's safe to rear it's ugly head and turn into infecting bacteria again. It can live on surfaces for months, some articles say years. ONLY BLEACH KILLS IT. And even bleach has to be on it for at least three minutes to be affective, some articles I read said six.
If you have been through this and have any suggestions please post them below. Not just to help me but to help anyone reading this. This is one scary disease. Lyme was bad enough, this is making me feel like I'm going to die. I can't eat, I'm so weak, I have horrible anxiety, I can't sleep and I live in fear of giving this to someone else now.
Here is a collection of C. Diff Forums, and alternative treatments that I have collected.
Friday, April 15, 2016
New Treatment Protocol Overhaul
So moving on to new healing aides and lifestyle changes.
I realize a big part of what I need to do is get my pain under control. As it is right now I have to be in bed nearly all the time. I can barely walk, play with my grand daughter or shower. Everything is just painful because of my back and shoulder.
So here's what I am doing in the moment.
Chiropractor
Getting adjustements: I started out weekly and now going to every other week. Just doing my upper back right now because I'm scared of my lower back as a prior chiro experience messed my lower back up badly. So just starting with upper back for now.
Results so far: So far my chiropractor has fixed my upper back rib pain that I woke up with and lasted two weeks. I believe it was a sublexed rib.
Laser Light Therapy: I started going to get this done at my chiropractor 3x weekly. I did that for two weeks then moved down to once every other week. I would do it more but finances only allow for every other week. I did buy an at home machine too that I use a couple times a day. I bought a Light Relief System and I'll let you guys know if it works after I have been doing it for awhile. You can get one of these on Amazon for pretty cheap. Check it out here: Light Relief Infrared Pain Relief Device
Update: I have been doing this for about a year now. I LOVE it and still use it daily. Love the heat setting!
Accupunture
I am getting acupuncture for back pain. It seems to work great the day of.. but then the next day back to the usual pain. My chiropractor works with a lot of Lyme patients and he says its not uncommon for accu to not control pain in Lyme patients. He suggested electrically charged water.
Electrically charged water: I have no idea what this really means. It is water toned to the frequencies of certain diseases and what heals them, so that is what I am trying. Sounds woo woo I know, but i met some people (including health care workers) and they told me he helped them, so that is what I am doing too.
Biomat
I use my Biomat daily. I lay on it mostly at night for several hours, hoping the infared heat is healing my damaged tissues/muscles inside my back. It feels great when I'm on it but hoping if I do it enough I will get more lasting results. Right now it helps relieve my muscle spasms in my back when I lay down, but as soon as I stand up my back hurts again.
Hemp Oil
Supplements
Everyone asks me what kind of Cannabis or hemp oil I use.. so this is the two I have tried.
1. Green Garden Hemp Salve
Update
Thursday, January 28, 2016
Week 1: Bee Venom Therapy for Lyme Disease, EDS and back pain.
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Suzy Q watching the bees. |
The stings themselves are different each time. The first sting hurt but only for like five seconds then it numbed itself. The second sting, I barely felt while she was stinging me but then afterwards I could feel the stinger pumping out venom burning the nerves for like fifteen minutes. After the stinger was removed I had a sensation that it was traveling through the nerves in my back. The third sting really shocked me at how bad it hurt. It felt like someone put a cigarette out on my back. It lasted much longer then the others.
I woke up feeling very sick and toxic, herxy feeling. I almost had the feeling I should wait to do another sting but I felt if I couldn't make it through this first week even, what were my chances of any success? So I pushed through and my daughter Britt helped sting me.
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My daughter keeping track of bee stings. |
So tough first week for me. I feel like a big baby saying this as others are stinging themselves ten times, three times a week and I'm having troubles with one sting.
One thing that I think is helpful to point out, is that my daughter Brittany went and got me a calendar to keep track of stings and reactions. This will be helpful in so many ways. You know how us Lymie's brains don't always work just quite right, so now I'll be able to look back and remember what happened at certain times.
This first week I:
- Did Test Sting
- Stung 3x after test sting.
- Educated myself on Serum Sickness.
- Brittany made a wonderful chart to help keep track of stings and symptoms.
- Dranks lots of lemon water and alka seltzer gold to detox.
Update
I do think BVT helps others. I don't want to dissuade anyone from trying it. I have many many friends who are benefiting from it. I am a tough case and am very sensitive to many things so it doesn't shock me this happened.
But I am sad. I studied this for almost a whole year before doing it. I was so ready to get better. I really thought this would be the answer for me. But what m y body is telling me is I need to be gentle with it. I do wish everyone else who is doing it good luck and I sure hope it helps you!
Thursday, January 21, 2016
And the Journey into Bee Venom Therapy (BVT) Begins...
Western medicine has not helped me. (Not that it won't help others) and supplements, herbs and diet have only taken me so far. I am in incredible pain daily. I have Lyme Disease, possibly EDS, for sure hypermobility issues, severe back pain and have become mostly home bound again. Most of my day is spent in bed.
1/22/2016
My First Sting
The Test Sting: This is the first sting you do to make sure you are not allergic to bees. You sting yourself and remove the stinger pretty quickly to make sure you won't have an Anaphylactic reaction. I didn't.
I did my first sting today. At first I woke up all gung ho and got one of the bees onto the tweezers. Got the water ready to put the bee out of it's misery quickly ready and bam.. panic attack. I put the bee back in it's home. I felt so bad for the bee and was scared to sting me once I saw it buzzing.
I tried again and bam.. panic attack again.
When my daughter woke up I called her down to help me. At first we couldn't keep the bees on the tweezers. They kept getting out of the tweezers. It was pretty chaotic for about fifteen minutes while we tried to capture escaped bees and then keep them on the tweezers. But eventually we got one. He woulnd't sting me at first. He even fell off onto my arm and I let him crawl over my arm for awhile hoping he would just sting me on his own. But he didn't. This is by far the hardest part of this for me. That a bee has to die.
My daughter said this in response to someone mentioning we don't have a right to take someone's life,
"That definitely makes it much harder, but if it's about saving a family member, be it your child, mother, or significant other, you would do just about anything. Bees are kind of creatures of servitude. They serve the queen and the hive their whole lives, so I think if anyone can appreciate their life serving another's, it's a bee. I'm a vegetarian and avoid ants on the sidewalk, but I will happily sacrifice some bees on their last limb of life to help my mom. And we will be thankful and appreciative of their sacrifice. We may need to get a hive of our own if we buy a house, right Mom? It might be a good way to give back to the bees!"Also I had to remind myself that bees only live about six weeks and by the time they send them to us, they are already at the end of their little lives. But yes, I do feel terrible about it.
So anyways, we finally got one that didn't get away and it stung me. We stung me on the back.
How Did it Feel?
Not as bad as I thought it would. There was about a five second period where I was like, "Ouch, Ouch, Ouch, then it faded and I was numb. I don't know if it naturally numbs you but I couldn't even feel it when my daughter pulled out the stinger. If you look closely you can see part of the stinger next to the bite.