Living through Tumultuous Times with Chronic Illness

 Lyme, EDS, Pain, Insomnia, Fatigue, Stress, Doctors, Repeat.

Then throw in all the craziness of the world right now. More stress.

How can we heal when we are in a constant fight or flight mode? How can people that cause the stress live these long healthy lives?

How can other chronically ill patients support people who cause this stress? 

I am just so sad. 

We live in a world where people do not care about others. Not everybody, but too many. 

We have a crazy president and a team of sycophants that surround him and enable him. 

We all risk losing Medicare, Medicaid and Social Security. But so many for some reason, still stand behind this maniac. I just don't understand it. 

Again, I am sad. In pain, and sad. 

I know a lot of balance is needed right now in this world. Trying to do the little things you can, while still taking care of yourself. Trying to stay informed of what is going on in the world, but still taking mental health breaks when you need them.

It's so hard to feel helpless, and hopeless. But I know there are people out there fighting the good fight.

I remember when I used to be able to. Now I watch, glued to my tv screen, watching our country crumble and taking a big part of the world with it. 

This is what I want the world to be. I pray one day it will be.

Back Problems

So not it's February 2025

Just a vent...

My back problems started in 1991. That was the first time I threw out my back. I started doing it more and more until about ten years ago I could no longer twist, bend, sneeze or roll over in my sleep without "throwing out my back. I have gone to so many doctors, pain clinics, physical rehabs. I have had a nerve ablation and epidural. Both of those just made me worse. I have gone to several different chiropractors.

I constantly sublux my ribs and have sharp pain in between my shoulder blades. I have bulging/herniated discs in my upper back and lower back. Several of them. I have multiple meningiomas throughout my spine and arthritis and degenerative disc disease. I have an annular tear and high intensity zone at L5Si probably like everyone in this group.

I have bad reactions to most pain meds so I can't take them. Although doctors and the pain management place pushes them on me every time I go. I just react badly to them. And also it seems like the doctor just want to treat pain but doesn't seem to care about the weakness, pressure feeling and numbness that I experience in my legs and arms.

After thirty years of this pain I finally just called a spinal surgeon myself since my doctors and the pain clinic just refused to refer me. They asked me to do two "current" Mris of my back which I did. But they did my thoracic spine and lumbar, but didn't include the si joints or my ribs which is part of my pain too.

Anyways my regular doctors said she was referring me to a neuro surgeon in Madison, Wi cuz of the herniated discs and annular tear.

So I called the hospital to make sure they got them and she hadn't. So after awhile she called back and said she found them and the doctor will look at them in the next couple days and call me back.

Literally ten minutes later the receptionist called me back again and said ok the surgeon looked at your MRI and said he can't help you surgically. And hung up.

I feel hopeless. There is no hope. All I can do is lay in bed all day and night and just be in pain. How can a surgeon not meet with you? Is this normal? Did you meet with yours before surgery?

I have so much pain in my upper back, lower back, ribs, hips, pelvis, groin, knees to the bottom of my feet. If I stand for more than a minute I have numbness all through both legs. I have numbness in my arms and I cannot sit at all. 

How is this life? And nobody cares. 

Ok, rant over. I know you are all in pain too. I just wonder how everyone got help? And if anyone else has the problem of not being able to take pain meds without bad reactions.

Is there anything natural that works? I have tried CBD, infrared mats, biomats, earthing mats, tens machines, all kind of supplements, chiros, accu, massage. I am trying to meditate, trying to look within to figure out any trauma that might be unresolved, figure out how to heal from within, lots of different diets. 

Is this Lyme? Is this EDS? Is this something else? Is it a spiritual thing? WTF is wrong with me? I see so many Lyme patients traveling and living life and my whole life is in bed. 

A big part of me is giving up. I can feel it. There feels like t here is nowhere to trun. A lot of shows I watch say you have to find the answer within yourself. I can't figure out how to do that. All I know if I lay here day after day getting weaker and stiffer. I dream about pain, I feel it all day and all night, I can't bend, twist, breath deeply, roll over in my sleep or lift anything. But if I try any meds they make me feel sicker and never take away the pain.

Sorry I know this post is not uplifting, but I'm a realist. And this is my reality.

God, please help me and all that are suffering in this world. There is too much suffering.

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

My Paranormal

Happy Zazzling

Time for the Holidays

Lisa Hilton

Drawn to You

Mimi, Mom & Me

Mimi's Adventures

Zazzle Shops

Accepting That I am Sick

As I lay here, with my body shaking, feeling weak, feeling internal tremors racing through me and kinda feeling like I might throw up, I realize I am sick. I realize I have to acknowledge my limitations and really not feel bad about them.

I am tired of feeling guilty for being sick.

I am tired of feeling guilty that I haven't gotten better.

It's just time to acknowledge what is and live as comfortable and as giving as I can in the last part of my life.

A little while ago my little granddaughter asked me to go to the park. So I drove separately so that I know I can leave if I should have to and not ruin their time. We played, I watched her play, laugh and run around. We walked the trails and sat by a pond. It was so pretty. My body lasted fifteen minutes. Then I excused myself and drove home all shaky.

It makes me sad. I want to stay longer. I am gracious for those lovely fifteen minutes of my granddaughter playing. Of watching my son in law play with her like the good daddy he is. Of feeling the sun on my face. Of hearing the Fall leaves blow in the breeze. Of feeling the pine needles crunch under my shoes. 

I noticed every detail of today. The air, the sounds, the smells, the feelings my lovely playful little granddaughter was experiencing as she run through the trails and grass and went down the slide holding her daddy's and my hands. If there is anything that life is about, it is that right there. Love, unconditional love. Nature. God.

I feel like today might of been my last day out. I came back so weak. I wish I could have a million more of these days, or moments. But I feel so weak. Each outing has become harder and harder. I am sad I won't have these days with my other younger granddaughter. I want to see and feel her joy as she races through the park too.

People tell me to hold on, one coach I worked with lately made me feel guilty as they view my acceptance as "giving up." Actually even accusing me of "sabotaging my health." Few of the doctors that I have gone to will even acknowledge I'm sick. But here I lay all shaky and weak, feeling like my time on this planet is limited, very limited.

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.

Children and grandchildren, please know that I love you. Please know you are my world. I have left a letter for you on my computer. I love you so very much and if possible I will be watching over you everyday. I promise not to scare you. Haha

Lyme friends, please know that I love you too and hope that you do find your answers. I will be up wherever it is that we go, standing with our fellow warriors that have gone before me.  We will all still be with you. 

Sorry I'm getting very emotional writing this, but I just feel this needs to be said to all of you.

Don't feel guilty for being sick.

Don't feel guilty for not getting better.

Don't feel guilty that you can't do what you want to do. The point is you want to, it's the universe that sucks for not letting you.

Don't blame yourself.

You are trying hard.

Don't let other make you feel guilty for being sick. You did not "negative" think your way into 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.

Know in your heart that if you could play with your grandkids or children that you would. You would drive them to school if you could. You would be more a part of their sports and school shows if you could. You would be a better partner, wife, husband, boyfriend or girlfriend if you could. If you could so those damn dishes or take out the garbage you would. If you could go shopping for yourself or family you would.

It is not your fault that doctors, friends and family judge you and don't understand your illness. 

Just let go of these negative things and realize that you are in the position you are in. Do what you can from that position and make the best of it without feeling guilty for what you couldn't do. Sometimes breathing is all you can do. Sometimes you can watch a movie with your kids, sometimes cook a meal. Each day, each moment will always be different. Don't expect too much of yourself.

Now feel this (((((( HUG )))))))) and anytime you need a hug come back here and feel it again. 

1. 
   

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.

New Treatment Protocol Overhaul

Ok so the Bee Venom Therapy didn't work out for me.. I hope it does for others and it seems to be.

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

Rubbing this on my back and shoulder throughout the day.

Supplements

I am one of those people who reacts negatively to most meds. Especially anything sedating like allergy pills, pain pills, anti anxiety meds... I just can't take them. So I am taking some supplements that are supposed to help reduce inflammation and just aid in healing. Also some that were recommended by my gene testing results.

Turmeric, Fish Oil, B 12, and  Calcium Ascorbate (Vitamin C) Powder & Fibro Cream.

Since C. Diff I also added in Oil or Oregano, Aloe Vera Capsules, Garlic Capsules, two forms of probiotics, Bentonite Clay, and CBD oil along with Prodovite.

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

2 CBD Oil Balm

Leave me a comment below what you are  doing to try to get better, and what results you are getting. I would love to hear it!

Update

June 2016: It's been a couple months now since I started this routine with hemp oil, the Biomat, the light machine and Im doing about 75% better. Seriously out of all the ridiculously expesnive Lyme treatments I have tried that didn't work, this is the cheapest route I have gone, the easiest and most painfree and it's totally helping me with pain.

I am still dealing with awful fatigue and depression feelings though. Still need to find something to help that. 

Week 1: Bee Venom Therapy for Lyme Disease, EDS and back pain.

Suzy Q watching the bees.

The First Week of Bee Venom Therapy

Ok, so the first week was harder then I thought it was going to be. I knew it would be hard, painful and I'd have some flare up, but man, I feel really sick.

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.

My daughter keeping track of bee stings.

Throughout the day I just felt so sick. My lymph nodes in my groin and armpits swelled up. I developed a low fever and I just could barely stand. I got sharp pains in my heart which alarmed me. The stings are itching so badly I can almost not take it. Icing my back relieves it to some extent. Holding onto the hope that that goes away after the first month like everyone in the Bee Venom groups say.

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.

I have to say the hardest part of this for me, is still killing the bees. I have not made peace with thinking my life is more important then theirs yet.

Update

Sadly after the first week of BVT, I had to stop. With each sting my reactions were getting worse and worse. After the third sting I had a feeling I should stop but I pushed myself to do one more. That night was one of the scariest nights of my life.  

As usual right after the sting I barely had any reaction. But a couple hours after I started getting really bad pain around my lungs. My sister was over visiting from out of state and I had to go lay down. I couldn't even sit and talk to her. 

The bite started burning and becoming bigger and bigger. It didn't feel right. I started getting a feeling like it was swelling inward as well as outward. The redness started spreading across my back to my side and to the front of my stomach. All my lymph nodes swelled and I had red welts in random places that looked like stings but were not where I had stung myself. 

I developed a fever and bart like rashes all over my back and butt. I had pimple like things spread all around the bee stings. It was one long night. One of the BVT leaders told me my reaction was totally normal and that it was the venom killing pathogens, but my body told me that it was just too hard on my body. I was sick for about two weeks after this. It must of swelled the lining around my lungs which I am still having trouble with now a month later.

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!

This was the start of the bad reaction six hours later. It only grew from here around my side onto my stomach. I only took pictures of the beginning of the reaction about six hours in then again at about eight hours, I wish I had gotten pictures throughout the night but I was too sick to move.

This picture is of some of the welts I was getting on my side.

As it started spreading around to my side.

It was the size of a cucumber sticking out of my back.

Click Here to get back to original post and the Bee Venom Therapy Protocol.