BELTANE; I woke to the gentle sound of rain drops against my window. The day is unseasonably brisk and sullen. As I lifted myself out of bed, I mumbled “Time to take my meds”, I thought to myself, what a shitty way to live, every day wake up to a breakfast of Pills, then 2 hrs later, a medicine ball, 2 hrs later more pills, 2 hrs later supplements, 2 hrs later a Tincture. Then around 6:00 PM, I get to do the pills and medicine ball all over again. Then, I said to myself “Self, stop complaining, at least you get up every morning, you can walk to get your meds. I could be bed bound, or, I could possibly be dead.
At least I am seeing what appears to be a slight improvement in my health. I am an extremely fortunate woman, even though I have many days when I feel doomed, intense pain, anxiety, defeat. I am still much better off than others with this disease Yes, I have been through a LOT in my life, however, it has all taught me Very Valuable lessons. I also learned exactly how strong a person I am, I never allowed anything to keep me down.
The disease has altered my life Majorly, three times. I have always believed Everything happens for a reason, I can now see why things happened.
If [detachment] had not caused me to leave my marriage, I wouldn’t have gained the strength and knowledge I needed to survive this nasty disease. I’d never have gotten my job, which is now supporting me quite well, I Luckily also got grandfathered in for my insurance. [I would not have had medical insurance if I were still married].
If I didn’t have to work through all those bouts of Bells Palsy, I would have crumbled and remained in the shelter of my home that I would have eventually lost. If I didn’t get up every morning as sick as I was during my early treatment, I’d never realize just how much strength I have, how much I can deal with, how much I can defeat. If my Dr of 12 years didn’t get nasty, spiteful, and release me, I would never have found the excellent LLMD I now have that has been treating me aggressively, causing me to see a difference. I now have an entire team of LLMD’s.
If I didn’t have to leave my job, I’d never have learned so much about the importance of Remembering Others in their time of need. Truly holding out your hand to help others. Remaining positive “deep within” no matter how terrible you feel. If you have nothing nice to say “Shutty”, you never know how DEEP words can CUT a person. I have learned to forget things that have hurt me terribly, and caused me much grief, I have also learned from those experiences.
I feel I “Beat” the system, I have taken all the Negatives that were lunged at me, and turned them into Positives.
There have been many times I could have just remained lying down, just given up. There is a survivor deep inside that would not allow me to. I fought very hard to keep my head above water ALL my Life, since birth. I have always been kind, a giver, was never mean, vicious, vindictive. I do not believe in gossip, it hurts people very badly which is something I have never wanted to do. If I hurt Anyone, I loose sleep an cry over it, even if I could justify it in my mind.
Still, I sit here alone every day because I could never let anyone fully in, there was always a Very High Sturdy Wall, it was built when I was very young, as I went through Life, more people hurt me, tried using and abusing me causing the wall to get Higher and Stronger. The Wall is the only thing I am still unable to move or break through. I guess this is another lesson for me to learn, “How to break my wall, or at least make a door way for someone to enter”.
Monday, 4/21/14 I added “1” drop of Samento to my Protocol.
Tuesday about an hour after I took the Samento, I couldn’t keep my eyes open. I had to sleep.
I have, nausea [lated all morning], stomach cramps, pains in my feet, legs, arms, hands, neck, head, chest. I also had a little Vertigo, ALL short lived, some are old pains returning, some are new. I also have what I call a "flash fever", it lasts a little longer now. [Even my Hot Flashes from Menopause happened in the Spring & Summer, in Winter when I really wanted the Heat, they were no where to be found] lol
Today, about 1 hr after taking it I became Excessively Tired, I HAD to lay down, when I had to get up to “pee”, and old familiar feeling returned, my body felt SO Heavy. It was as if gravity was pulling my Heavy Rock filled body to the ground. My neck has that feeling of being unable to support my head, this is another feeling I used to get quite often. I have a new Headache also, unlike my usual. My dreams are also quite funky, they have always been a bit strange, but they are a weird strange now. HeartBurn, I have been getting this on and off, so I’m not sure if it is because of the Samento or just a coincidence. I got it yesterday and today about 1/2 hr after taking it. Stomach Cramps I haven’t had in years, they are back, the ones I have always described as “Alien’s with very Long, Sharp claws, that are trying to Scratch their way out through my Stomach”. Luckily, they only last a few minutes.
I am really hoping this does something for the residual effects of bell's palsy [synkinesis], I have started Massaging the tension, I can feel the area all balled up “Again”. I would feel SO Great if my face came back. I read a few articles this morning where women had B.P. and after 3-5 years their face bounced right back. Id feel SO HAPPY. I’d like that more than anything.
I have decided against taking a 2nd drop tonight, I’m just going to do the one for a few days, then add the 2nd drop so I am not confined to bed ALL day and night.
Its now Wednesday, the good thing is I woke up feeling good, I got up 5:30am, went out with Zeus a few times, took a few pictures. I have done the dishes and cooked 2 meals. I also washed the floor and straightened the kitchen.
It’s 2:45, I'm now taking my one drop of Samento now. I figured I could at least have half a great day [in case to makes me wicked fatigued again.
I was a bit scared of what was going to happen, I was prepared to deal with it, but non the less, scared. I’m very happy to say, SO far I feel Samento is going to make a big difference. I’m going to take it slow, just as my LLMD told me to do, get my body and brain used to it then increase it.
I felt I needed to write this because I have not heard anyone say they have experience the "feelings" I get.
Yes, I have an assortment of intense pains throughout my body. My neck gets a pain that feels as if can no longer support my head, my head is going to just fall down, or off my shoulders. I get the pains in my legs, knees, arms, head, feet pains. Then there are the BaZillion Neurological Symptoms, I have so many, I feel as if I am watching me, in a Horror Movie or a living Nightmare, The Anxiety is Terrible, I have described it in detail in my other posts. There are many people that have these same symptoms.
Here are my unusual experiences. I have a lot of weird "feelings", for instance, vibrations that occur in my feet and go through my body. Waves of Intense Heat that start in the Solar Plexus Chakra, sometimes the Sexual Chakra, they feel like someone put a high powered light on in that area, and it spreads out, washing over my entire body [inside]. Then I have a feeling of heaviness or like a constricting feeling under my breast, exactly where my bra rests, it is still there If I go braless. Then there is a feeling I have always gotten if I thought something was wrong, or something was going to happen. I guess I can explain it as a feeling of maybe an Adrenaline rush. It's in the very center of my chest, also its a flash feeling, it lasts a second, but if I get it, it has lasted on and off throughout the day. Then there are other feelings, also in my chest area, I'll describe them as quick jolts, they move from the left side to the right side, then center, very fast electrical jolts. I sometimes honestly feel as if I am short circuiting. This one is the strange one. I "feel" as if a certain area hurts. There is no pain, but I "feel" there is. I actually have to lay down when I get these "feelings". These "feelings" actually sometimes make me feel weak, sometimes dizzy.
When I first starting experiencing these things, it really frightened me big time. It actually caused me to have full blown panic attacks. Yes, I still get a bit nervous when I get them, just not as bad.
I only told one person, the nurse I used to have, she asked me to rate it on a 1 to 10 scale. How the Hell do you rate "Feelings".
Anyone else out there have anything like I have described?
I'm tying this very slowly, having to correct many mistakes. See, I'm typing while Crying and Sobbing Uncontrollably, the tears are like water works falling from my eyes. [Detoxing]
I woke at 4;55 feeling really good. I took my aspirin and 1/2 atenolol, then, it felt exactly like a wave of gloom washed over me around 7:30 I felt a warm surge start in my chest, then move all through my body, leaving me feeling weak, strange. Here I fucking go Again. I’m filled with anxiety, fear, feeling of impending death, alone, sadness, uncontrollable crying. I feel like screaming “PLEASE, someone come and just Hold me till it all goes away”.
I noticed this morning, I seem to hold my breath [a subconscious thing]? I notice it all of a sudden, I then breath again.
I had 2 weeks of feeling a little better, is that that ALL I can fucking have? Why did I crash so soon?
Usually I make it at least to the full moon, then, next day I crash. The full moon is 4 days away. Maybe the Lunar Eclipse is effecting me?
Nothing in the nightmare makes ANY sense or follows ANY rules. Always Expect the unexpected, you can feel like a million, then at the blink of an eye you will feel like total shit . Unable to function.
The entire month of March was Horrific for me, Every fucking Day I was filled with Anxiety, intense fear, sadness, uncontrollable tears and constant thoughts of Dying.
When I woke one morning [2 weeks ago] actually feeling good, I was a bit suspisious it took a couple days, then I actually had a day when I had no pains for the entire morning, when they returned, they were minor. I throughly enjoyed Every One of those days, so did Zeus. The Good Days are so short lived aren't they.
I woke feeling great, took the trash out, went walking with Zeus. It's finally such a beautiful day, Sunny, warm, happy. I saw a few neighbors, we exchanged smiles & hello's. Came in, opened the windows. Thinking I can go walk a little at the Trail near the Ocean in a while.
Then, "BOOM". Here we go AGAIN.
The strange sensations, weird feelings darting inside mixed with fast jolts of pains, the intense NEED to lay down, unstopable tears, fear, doom, they all returned. I had a good night last night, I thought I was finally free.
It's been Is this how it's going to be for me now? Is this my new Prison? I have lived in Prison (solitude) for over a year due to Bells Palsy. I need some relief, some kind life. I get to go out a few minutes in the morning and Feel "it's going to be a Great Day Today". Then someone says "not today". lI have been feeing like this since 2/16. With a few good hours between, I guess that's so I can get my hopes up AGAIN.
When you feel like I do, right now, there are no positive thoughts, no fairy tale endings. It seems like I'll never feel right again. It's days like this that make you want to give up, makes me wonder if it's all worth it. The Evil Lyme king has me trapped in one big mind fuck.
This is MY REALITY, the mind of "Chronic Neurological Lyme Disease".
This is my Reality, I go through these bouts at least once a month, sometimes more. I tried to explain it as vivid and detailed as I could. When you are filled with that much fear & anxiety, there is no way you can think positive.
At that moment, my only reality is;
"I'm going to Die".
Today was one of my Terrible Days. I woke at 5am with nasty heartburn. Once again, I choked on my own saliva. (After doing much research I discovered I also have "Vocal Fold Paralyses")
From there, it goes to a wicked panic attack, pains in my chest, feelings of total despair, hopelessness. Gloom & doom, Feeling death breathing over my shoulder - Then - the steady flow of uncontrollable tears.
As I'm crying all sorts of thoughts RUSH at me all at the "Same Time"
Your alone, no one cares, no one understands, your going to die and no one will know. If the world is a hologram WHY do I feel so terrible? When I die, will my conscious really leave my body? What if I feel all they do to my body after I die? Should I go to the hospital? Am I going to have a heart attack? What if the Star Wars that's going on in my body get together with the spirochete's and all turn on me? What if the bugs are eating my brain? Do I have holes in my brain? Will the holes heal? Will the parts they are eating grow back the same as they were? Will my face ever feel normal again? Will I EVER feel like I once did? My chest hurts, my legs & feet hurt. My head is throbbing and I can't see well. I can't call anyone, I can't move, if I move it hurts so much worse. I have to sit here in total silence and cry, I'm too weak, too dizzy to move. Are the bugs eating my eyes too? Will I lay here in bed and just be eaten alive from the inside out? I feel like a living dead girl, that's it, I'm a Lyme Zombie.
I HATE days Like TODAY! They are the worst.
I woke this morning feeling pretty good. After my IV I took Zeus out, cleaned off my car and took it out of the yard.
Now, I'm laying down "again". I felt a weird wave in my chest, I then felt dizzy, weak, and just not right. I'm not sick or in as much pain but I'm not good. I also felt tears approaching again. Looks like it's going to be another day like yesterday.
These feelings of intense gloom & doom are so frightening.
This disease is a nightmare, one that I journey alone. No hand to hold, no soothing voice to comfort me.
I woke feeling pretty good, just very tired. After my Flagyl. I felt a bit better. As the day progressed, I felt panicked. I layed down and slept mostly all day. I still couldn't wait to get to bed. I had to pull the car in the yard, we have a lot of snow out there, a parking ban is in effect. I crude As I cleaned off the car, everything hurts. Today, nothing out here is pretty.
Just as yesterday, I woke feeling pretty good. I took Zeus out for a walk to the corner, came home, cleaned my car off then parked it on the street. I made soup, did laundry & dishes. I still feel strange. I could cry very easily. I have strange pains flashing here and there in my chest. The feeling I get when I'm extremely nervous, only it comes and goes in a few seconds.
We all have a different way of receiving & processing data so we totally understand. There are many ways to explain things, we need to try each variation until we see/feel the light go off letting us know the data has been received, understood & is being stored.
A Lyme Brain is very complex. There are days when we will read something over and over, it will make no sense at all, other days, it will be understood, but not stored, as soon as it's read, it's forgotten, our memory appears to be full. Then there are the days we attempt to have a discussion, we open our mouth to speak, we get the impression our memory has been erased or deleted. We struggle to find the words to convey out thoughts. In our mind we are doing a constant "Word Search". This results on us feeling unintelligent, insignificant & insufficient. This is why I personally sometimes do my very best to avoid conversations. I have sometimes gotten into discussions, all went well, suddenly, as if someone flipped a switch, my mind went totally blank. I could no longer understand what was being said to me, all I could hear was blah, blah, blah. I could not recall anything to correspond with the conversation I was in the middle of having. I suddenly felt & sounded like a person that makes a few very solid intelligent statements, but can't back them up with valid information.
There are days when I am as cold as ice, no emotions, empathy, or reactions to anything, the shell of the person I once was, As I have always described myself a "Living Dead Girl", "Zombied out". I was like this for 5 or 6 Straight years. I still remember waking up feeling absolutely nothing but the deep desire & need to run. That was the day I packed some stuff in my car and left my husband of 25 years (a story for another time) I never shed a single tear, never felt nervous, stressed or hurt. It was the very first time in my entire life I was ever alone, yet, I had No Fear. My heart was "Stone Cold Dead".
Since I started Rocephin & Flagyl IV I have started days when Any & Everything make me cry uncontrollably. Making me feel afraid, alone, lonely, hurt, hopeless, helpless, sad, depressed, Very Dark (Black) I also have the intense feeling death is breathing down my shoulder. I become mentally weak & vulnerable. This goes on anywhere from 1 to 5 days, it can last for a few hours per day, or steady the entire time. Seeing as I have Chronic Neurological Lyme, this is the way I herx.
I also have many pains throughout my body, sharp piercing electrical long Needle type pain in the right side of my neck, so intense my shoulders shrug as I cringe in pain. In the center of my right thigh, a severe throbbing making it feel as if it's rotting from the inside out. The bottoms of my feet feel like they are walking on very sharp stones. My body feels like it weights a Ton & gravity is pulling it toward the ground. A dull throbbing nightly headache, Pain behind my ears, the feeling of Bells Palsy returning. I have had bilateral Bells Palsy since 8/22/12, I have also had 8 prior bouts of BP. At times my hands are useless, unable to type, text, open a bottle of water, they become stiff & painful. My sight fluctuates constantly. My legs get sore, making it difficult to walk or stand for too long a time.
The Constant noise in my ears, sometimes a high frequency buzz noise, a heart beat, or what I call pins & needles (the sound pins & needles would make if you could hear the feeling).
I gained 50 lbs. I believe it's from the meds, but I'm not positive, it could be that Lyme has thrown off my hormones.
Weakness in my arm muscles due to the inability to lift more than a pound because of the PICC line.
Lyme has caused me to loose control over my body, my mind, my brain. I have indeed become a completely different person. I like to believe I am in the process of a transformation, like that of the Butterfly. I will be transcended to a peaceful, perfect Warrior of Tomorrow