Nobody knows of the work it makes To keep the home together. Nobody knows the steps it takes, Nobody knows—but mother. -Anonymous I wondered to myself if having kids would change my perspective on chronic illness. I wondered if it … Continue reading
Hey everyone, Top O’ the mornin’ to ya!
It’s 1:05 AM and I can’t sleep. My fan, with it’s broken stand, is blowing cool air in my face, and I am resting my back on a pillow with my heating pad on it I’m still buzzed from all the coffee I’ve been drinking all day today. So naturally, I figured I’d talk about a few things that have been going on with me the past few days, but also help reflect on something that is actually pretty serious when it comes to lyme disease. I know that many people think lyme disease is not serious or life threatening. “Oh, at least you don’t have cancer or are not dying”.
If one is treated effectively right away, for the most part it’s not life threatening. But for those who have had chronic lyme disease that has gone untreated for a long period of time, treatment is very hard and as the lyme spirochete multiplies in the blood, organs and tissues the body gets overwhelmed. (Which is often why we have inflammation in parts of our bodies where the lyme spirochetes are multiplying or hiding ect., bronchitis, laryngitis, colitis, sinusitis)
I hope you’re wearing your serious pants. Are you? Oh. You said you don’t wear pants? Fair enough.
One of the misconceptions about lyme that irritates me is that “it’s not serious or fatal”. This is clearly not the case.
If lyme disease goes untreated it can cause other neurological and/or degenerative diseases but also, it can and does take lives, commonly through heart failure or strokes. One thing I have noticed with a lot of sufferers with lyme disease is horrible lyme carditis. I have a lot of friends with lyme and we often vent about symptoms, the most disturbing (among a sea of other horrid symptoms) is, our heart issues. The past few nights I have been feeling so unwell. I have been dizzy, fatigued, and have had numbness on both sides of my face and down to my right hand. I’ve had these sensations before so I wasn’t sure if I should worry about them or not. I checked my pulse, and my arrhythmia was back. *Quick beat, quick beat, slow beat, slow beat, slow beat, silence, slow, quick, quick quick*. I got my mom to check my pulse just to make sure I wasn’t going crazy because I was already super lethargic and she said, “Your heartbeat is irregular”. I decided to sleep it off (figuring it was a herx) and put a warm compress on the sides of my face to help ease the annoying numb sensation. So the next day I still felt pretty sickly, e-mailed my doctor, and saw my nurse. I told him I was feeling pretty sick, and I also was an emotional mess, so he listened to my pulse, and right away was concerned and asked when the last time was that I had my heart checked. I told him over a year ago, and that they found nothing when they did the Holtor and EKG even though I was still having issues back then on and off. My nurse helped prod me to go see another doctor and get some tests done just in case there was more behind the heart arrythmia (although it’s probably just lyme being a pooper, I’m sure). But for me, it was so nice to have someone take my symptoms seriously when it seems the rest of the medical community wont. I cried. The gratitude from my heart poured out in tears that I tried to hold back. So with that said, I have friends who also have lyme disease that also experience major heart issues, and sometimes it get’s so bad that they are unsure if they will wake up the next morning.
So if you’re having issues with your heart, irregular heartbeats, blood pressure, paired with with dizziness, fatigue, numbness please go see your doctor. If you may suspect lyme please go to my resources page, there is a list of symptoms associated with lyme disease published by Dr. Burrascano, MD. Lyme is known as the great mimicker because it mimics over 300 different diseases- but if you feel like there is a cause for your symptoms and you weren’t just born with a degenerative disease do some research. The awesome thing is some of your symptoms might be able to be reversed if you catch it in time.
The below link also has some helpful information in the PDF document.
Love you all. Hugs and love.
I know I know, everyone is getting sick of these “Ice Bucket” blog posts but I wanted to respond to why I am not participating in this fad even though I was nominated twice. As a Christian and someone who deals with a chronic illness I feel I have a different perspective on this than most people do. Many are willing to jump onto this “ice bucket challenge” with good intentions and I’m not here to criticize them. So, with that said, I am not telling you to stop donating, and I am not saying that the intent behind this challenge was bad. I would say that the goal of raising money for the ALS foundation has had big success, with donations reaching 70 Million so far. So, you may be asking, “What’s the problem then?”.
This blog post is dedicated to Jim Young and Heather Askeland, rest in peace and thank you for sharing your struggles with the world in hopes that the world would listen.
1. A challenge. How is this a challenge? I’m not exactly sure what the creators of this challenge are trying to say.
Is dumping a bucket of ice water on your head a challenge in the same way that ALS is a challenge? Anyone can dump a
bucket of ice water on their heads and donate one dollar to charity, one time, and never do anything charity related again. Ironically, this is supposed to be a challenge? The bible tells us that we shouldn’t get tired of doing good, but also that we should do good when no one is watching so that a person is doing it genuinely from their heart, not for public approval or praise. So naturally I ask you, what do you do with your money when the world isn’t watching you? Do you still help people if you know they are struggling?
If God has placed someone in your life who is really having a rough go with things and you have the financial means to help that person, do you? Whether it’s a single mother, a friend who has high medical costs, or someone who just lost their job… are you helping them? Probably not, but you will give your money to a non-profit organization that raises millions of dollars each year. And of course it helps that people are watching, right?
“When you pray, you are not to be like the hypocrites; for they love to stand and pray in the synagogues and on the street corners so that they may be seen by men. Truly I say to you, they have their reward in full. “But you, when you pray, go into your inner room, close your door and pray to your Father who is in secret, and your Father who sees what is done in secret will reward you.
“And when you are praying, do not use meaningless repetition as the Gentiles do, for they suppose that they will be heard for their many words.” Matt 6:5-6
My point is this, we shouldn’t need an audience to do good, and we shouldn’t think that this one time ‘act’ is a magical remedy for the real and horrific struggles that those with ALS and other neurodegeneritive diseases go through on a daily basis because money is going towards research. May I remind you that research is not a person.
I have been posting my brains out on facebook the last few months because I keep hearing about seriously ill people committing suicide because they could not get help from the medical establishment. They all had severe borrelia infections (often paired with other co-infections) in their body. It is known that an untreated lyme infection (borrelia. burgdorferi or borrelia.myomoti) can lead to neurodegeneritive diseases over a period of time. Yet, lyme sufferers literally get no recognition from the medical community. To the point that disability gets denied, meds aren’t covered and people are too sick to try and work… they loose hope and no one helps. So, naturally, they take their own lives. It’s crazy to me that two diseases such as Lyme and ALS that can have the same cause (Borrelia and other coinfections) get treated completely differently by the medical establishment. One gets completely silenced while the other gets millions of dollars in research oh, and that’s each year. Lyme disease is a worldwide epidemic (according to the CDC) with over 300 000 cases each year in the U.S alone, while the diagnostic range for ALS is around 700. Did you know that we Lyme disease sufferers have the highest rates of suicide? Did you know that doctors lose their licenses for treating lyme? Why? Because the establishment does not want people to get better. If there is no one sick, we won’t need billion dollar fundraiser campaigns or billion dollar pharmaceutical companies.
( I wont get into the biology of the link between lyme and ALS so if you are interested in this you can find publications under my “resources” page. So, I challenge the ALS foundation to actually look at the link between lyme related bacterium and neurodegeneritive disease.)
Jim Young who I mentioned earlier was diagnosed with ALS, he found out later that he had an underlying lyme infection that led to his neurodegenertive disease. Unfortunately, it was too late for him. He recently passed away.
2. As an awareness campaign, I’ve noticed that with the ice bucket challenge, from what I’ve seen, no one actually takes the time to explain what ALS actually is. People “mention” how they were nominated for the ALS challenge, dump the water, and then proceed to nominate others. I feel that if one wants to raise awareness about something, we need to talk about it truthfully. If I were to ask you right now what ALS is, could you tell me about it? Even after watching all these videos of people dumping water on their heads for ALS?
This is from the website: http://www.alsa.org/about-als/what-is-als.html
Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
So basically long story short, this affects everything. The ability to breathe, eat, swallow, walk, talk….
3. Lastly I wish the ALS foundation would use their money to invest in the lives of suffering people, not just use the bulk of it for research. ALS is devastating, the lives of so many are crushed not only by sickness, loss of identity, grief, but also mounds of financial debt. The medications or tools (respirators, wheelchairs) that a person needs to survive are freaking expensive! Could the ALS foundation also look up ways to get free medication to people, or lower medical costs? Or like I mentioned earlier look at the LYME-ALS connection, because if people were treated early on, this could mean that people could get better and avoid ALS all together. But of course that creates a problem… that would mean there is effective treatment out there that is being suppressed. I used to live on a busy street growing up, we had a huggge yard and I was always outside. Ironically my house, and the two neighbours beside my house, both ended up suffering from different neurological illnesses. I had late stage neurological lyme disease, my neighbour beside our house got ALS, and beside them our other neighbour had severe MS. I just find it ironic that all 3 of us, that lived beside each other all ended up so sick with “neurological” illnesses. One of my friends shared a similar story with me, which actually is frightening if you think about it.
Heather Askeland recently committed suicide because no doctors were willing to help her and she could not afford the medical treatment she needed because she was labelled as having a psychosomatic illness. This happened a few weeks after hearing about another lyme disease suicide in Quebec.
For every dollar you donate to the ALS foundation, imagine that each dollar represents a person.
Now imagine that each person is contemplating suicide. Research, although good, does not help fight that battle that is so near and dear to so many with chronic illness. Research helps the system make more money and produce more meds that make more people sick and only relieve symptoms. These meds never cure’ or eliminate the problems that are keeping people sick. I’m not saying that borrelia is the only link, but we know that viruses, bacteria like chlamydia pnuemoniae, mycoplasmas, anaplasmas, harsh chemicals, asbestos can cause serious illnesses, diseases and cancers. If we know the causes why aren’t we looking at ways to eliminate them from the body and brain? I think we should all ask about the types of continued research that the ALS foundation is planning to do before a person donates money to their cause, so far it’s all about genetics, but a lot of people with ALS, were healthy and then became sick. Genetic markers don’t equal a “cause”.
How much money do you need for a research?
How much money do you need to help someone?
My hope is that the medical community will start to recognize lyme disease and HELP those who are suffering
so that they feel like they don’t have to end their lives and also prevent so many cases of neurodegeneritive disease caused by an underlying borrelia infection.
These past few weeks I’ve had a bunch of crazy symptoms flare up in my big ol’ face.
I think part of it has to do with the fact that I’ve been so stressed! We all know that stress is not good because it increases the cortisol levels within the body. So when your cortisol is high, you’re immune system starts to malfunction, heart rate goes up and all sorts of other treats decide to happen. So please, if you read this, find a moment in the day to relax somehow. Stretch, do a little exercise (if you can), read, pray, go to the park and be in nature..whatever. A moment to relax and unwind is better than none. 🙂
So one of my main complaints recently has been something called dermatographism ucticaria, also known as “skin writing”. I like to call it hives on steroids because in my opinion that’s what it is! It’s a nasty lil sucker! And holy crap is it ever irritating (pun intended).
A lot of times the causes of different types of hives can be unknown, sometimes there can be an allergy trigger, or a viral or baterial infection in the body or an underlying auto immune condition and the skin reacts to this. Because I have lyme disease I’ve done some research and have found that while herxing, a lot of times the ‘bugs’ like to exit through the skin. With herxing all the toxins and chemicals get released throughout the body, so it’s no wonder why the skin would immediately become irritated. I’ve had this issue of dermatographism for 10+ years, but for the most part it comes and goes in waves. Usually it lasts weeks, or months for me and disappears. Ever since I’ve started treatment, I’ve had more skin issues. More rashes, more hives. But these past few weeks my ‘dermatographism uticaria‘ has come back full blast. So, what I’m trying to do is help my immune system get up and running by taking some vitamins in the hopes that my body can relax a bit and the swelling will go down.
1. Cut out coffee. This is hard for me, because I love coffee. But lets be honest, coffee isn’t the greatest for us. It still is a drug and the high amounts of caffeine have been shown to have negative effects on blood pressure and the brain, so if you’re blood pressure is already high or if you’re having arythmias cut it out of your diet, even if it’s for a little while because caffeine can exaggerate those problems.
Instead drink lots of water and tea to help eliminate toxins from the body. I reccomend Ginsing tea. I buy mine from Vitamin World.
The more toxins you can remove the greater the chance of your hives going down- if your cause of hives is due to toxicity, or bacterial infections.
**Note: Caffeine also dehydrates you, so drink as much water as you possibly can!
Oh my lawwwd, I love me some anti-histamines. Some anti-histamines contain different ingredients, so find out which one works for you. The one I’m currently taking contains diphenhydramine hydrochloride USP. It has been so helpful.
3. Gold Bond cream. This was a suggestion I tried from some friends on facebook. I wasn’t sure if it would help my hives,
but to my amazement it did! I also tried the powder, which I didn’t find as effective, but the lotion stopped the irritation almost immediately. It WERKED.
4. Aloe Vera Gel has helped me in the past. I keep my bottle in the fridge and put it on my hives while it’s cold! EEE!
Aloe Vera is very soothing on the skin, and is great for irritation.
5. Find the cause.
If you can find what’s causing your irritation, then you can find ways to prevent outbreaks.
Ask your doctor for allergy tests. If you’re hives aren’t going away and you also notice jaundice, flank pain, with an onset of other symptoms it may be a good idea to make sure your liver is still in tip top shape.
If you think this may be the culprit you can buy liver detox teas, drink more green smoothies and change your diet to help your liver be able to eliminate toxins and do it’s job! I also like to take detox baths with a mixture of hydrogen peroxide, ginger, and epsom salts.
You can also do the same with essential oils and epsom salts, some even use apple cider vinegar.
I hope this has been helpful for some of you!
Do you guys have any remedies that helped with your hives?
Share your tips with a comment below!
When I thought, “My foot slips,”
your steadfast love, O Lord, held me up.
When the cares of my heart are many,
your consolations cheer my soul.
I just want to Say a big thanks to those who have been keeping me in their thoughts, prayers, and even pocketbooks.
I just want to recap on how treatment is going. It’s almost been 9 months straight that I’ve been on treatment now for late stage neurological lyme disease, babesia, bartonella and anaplasma phagocytophila. I can’t even believe it. It all seems like a bluur, a crazy ride filled with moments of highs and lows, victories and setbacks. Smiles, and nights ending with many tear-stained (thanks mascara) pillowcases. I remember in the beginning, everything was so scary. The nights I would wake up gasping for air, have horrid heart palpitations, vertigo, nausea, inability to stand for long periods of time, have to use my wheelchair, have horrid pain, spasms, blackouts, and see…all those things used to terrify me. I remember going to bed at night, expecting not to wake up the next morning. But, I’m still here. But now, I don’t scream when I’m in pain any more, or cry my head off sobbing uncontrollably if I can’t breathe-instead, now I just wait patiently, and silently for it to end. Sometimes tears still fall in the silence as I still try to hide my pain from people. But I only do it because I don’t want to complain about something people don’t understand or make them stressed.
In a way, I’ve gotten so accustomed to certain symptoms, that it’s almost like I’ve made a new friend, rather than an enemy, because I wont ever know which symptoms will be cured and which ones might stick around (because of damage also known as post lyme syndrome).
On a positive note: Slowly but surely I am getting better. I don’t know how much longer it will take to get back to normal but I am finally optimistic about being ‘cured’ of this horrid disease. At first when I started treatment I thought that being ‘cured’ was something that seemed impossible, but now as little by little I get better, I finally feel like I may get my old self back.
Now the negative news: My disability has been cut off through my insurance company, so now I have no income to pay for my meds/vitamins and other bills. I’m still not well enough to go back to my job, so I would appreciate every ounce of prayer that you can muster- to pray that God would provide. On top of being ill, stress can aggrivate my symptoms, so I am trying my hardest to trust in God throughout this thing and not freak out. As of this point, I feel like my feet are slipping, yet somehow I’m still standing.
So prayer that God would provide for my medical treatments, government disability, and for God to intervene with my case workers from my insurance company that stopped my disability (they haven’t even written me a formal letter saying that it’s been cancelled, they just stopped it). So bills are piling up, and funds are zip.
I’ve also started new treatment for “fibromyalgia” and had to stop it. Again. My air hunger and heart issues have come back, and I’m attributing it to the new med which can cause those side effects. I’ve also been feeling ‘ill’ in general since being on this med and I think it’s because it supresses the immune system, which in turn lets other things reak havoc in the body.
I also have a bunch of other scary health things acting up, so long story short:
I still need lots of prayer. I have a specialist appointment at the end of April, so hopefully I don’t have any more negative news.
But, God isn’t done with me yet. Apparently there’s still work to be done. And Like Paul said, to live is Christ and to die is gain.
If I live, it’s only because of Christ and his miraculous works, and if I die…that would be great because I get to be with Christ.
So let my life be a reminder to you that God isn’t done with you yet either.
I’ve made so many mistakes but he still pursues me and loves me. In the same way, he loves you.
Today has been a bad day! Gong show! To be continued… So, I am writing this post, AFTER, coming home from the hospital. Yikes. I was there for 2 nights and 3 days. I am not going to say much, … Continue reading
I went to my doctors today, but this time things were different. I went as a support person for a friend suspecting Lyme. Anyways long story short, I felt like crap and was herxing! I was in the office spassming and twitching like a crazy person! The bright lights also drove me crazy and gave me a huge headache. Yuck! Anyways my doctor noticed I was sick and gave me an IV to see of it helped with my twitches and jerks! He wasn’t even supposed to see me today, and he helped me out. I am so incredibly blessed! I just have to share that with y’all because there are amazing doctors out there who do exist!
Hey guys, Sorry I’ve been away from this blog for so long.
I’ve been back on treatment and it’s kicking my butt. The first few days were HORRID. I remember being in bed all day with an icepack on my head, heating pad on my tummy and the lights all off, no music. Then when I would get up, it was often to go to the bathroom because of extreme nausea. Yuck. Light sensitivity and extreme fatigue have been main reasons as to why I haven’t updated this thanng. But I have a tiny shred of energy so I figured I’d write a bit while I can.
I have thrush again. lol. I know it’s pretty common on antibiotics. And unfortunately, it’s super nasty. (Ooober man repellant! LOL) Anyways, I looked up natural remedies for this and started taking collidal silver, which has antibacterial/antifungal properties and have done so, for the past 3 days and I’ve noticed that the white on my tongue is diminishing. YAY.
I’ve also done some research and found that collidal silver is helpful in killing lyme?
I’m debating whether I should start implementing this into my routine as a regular thing with my antibiotics and cryptolepis??
Anyways! I’ve had a busy morning, so I am going to try and sleep for a bit because I’m starting to feel yucky.
Much love and hugs.
Thanks everyone for your continual support.
My doctor switched me from amoxicillin to Doxy (because of my positive anaplasma phagocytophila test) and OY, I have been herxing alot the past few weeks.
I feel like a zombie right now so please pardon me if I blog like a zombie. My brain is slow right now (Forreals). Anyway, I’ve started a new med which has helped a great deal with the “Lyme rage” and suicidal impulses, it makes me very very sleepy though, so I just take it before bed which is no big deal. So that’s positive. I have been going through a flare the past week which was no fun. My muscles and joints have been aching and bugging me, (especially my shoulders, left elbow, knees, ankle), and on top of that- my dizziness, hot flushes, visual disturbances, numbness and jerks have come back. I’m not sure if I’m herxing or going through a flare as this is normally the time when things get worse for me (on my menses) but my elbow has been numb and the numbness spread down to my pinky and ring finger which has been a new symptom. (Which can indicate herxing). I’ve had numbness before in my hands, fingers, face, feet you name it, but I’ve never had radiating numbness that started in my elbow and gradually (after a few days) moved down my arm and to my last two fingers.
I’m officially broke though because of my meds now. I honestly don’t know what I’m going to do, because I can’t work yet and I still don’t have disability. I purposely didn’t pay my phone bill so that I could use that mulah to pay for meds. I’m supposed to see my doctor in a few weeks but I can’t afford to pay for the visit! I’m stressed. I know God will take care of me but ugh. Stressful much.
So I had a couple friends over this weekend and we watched movies over here which was good, but I’m so stupid sometimes. Tonight I sat cross legged on the couch. I don’t know what happened but my right knee felt like it was moving in a way it was not supposed to, it felt like I pulled something. Smh. So now it’s swollen and I need to find my tensor bandage! I’m icing it and am hopeful that the swelling will be gone in the morning! 🙂
Keep fighting homies! Luh you!