I'm searching for the words to try to explain my journey fighting Lyme Disease and all that go along with this life-altering diagnosis. In 2010 my world came crashing down when I was told those earth shattering words that many of us live to fear, “You have cancer.” I was in Washington state at the time and thankfully my mom was able to fly in and join the support system I had there. From there we came back to Mississippi and was seen at West Clinic and after two biopsies determining that they believed I had Non-Hodgkins Lymphoma. By the grace of God my tumors disappeared. I can remember being in the hospital and asking about Lyme disease. It was brushed off and treatment for histoplasmosis began. Several PICC lines and countless vials of IV medicine over an almost year and half process that round of treatment was ended. The next few years were spent in and out of the hospital and emergency rooms. A list of specialists a mile long diagnosed me with a list of diseases and disorders equally as long. With each new diagnosis or symptom, a new medication was added. It was only a matter of time before my body crashed under the weight of all the medications.
In 2013 I was diagnosed with late stage neurological Lyme disease. The tests showed that I was undiagnosed for over 7 years. The crazy thing is that Lyme can mimic or cause Lymphoma so all those years I spent treating something that was caused by my Lyme disease. I started the first round of antibiotics via a PICC line in late 2013. By March of 2014 I had endured six PICC line infections, removals and replacements when the doctor's decided to put in a portacath. After nine months of IV antibiotics treatment twice a day of 3 different medications my body was falling apart. In the process of trying to kill my Lyme and coinfections the treatment was unfortunately killing me. I was bedridden most of the time and unable to enjoy life or even participate. It was after a very honest talk with my doctors that we realized this was not the path for healing. I worked hard over the next year and a half to try to rebuild my body after the havoc of Lyme and treatment. I lost 120 pounds, started eating healthy and exercising and took myself off every pain medication/ pharmaceutical that were flooding my body. It was during this time of sickness and hope for recovery that I found my true passion in life and enrolled in college to one day become a pediatric oncology nurse.
Sadly, this window of health was short lived and by the end of 2017 I was beginning to show symptoms of my disease no longer being in remission. In early April of 2018 I was forced to face the truth and resigned from my job and started the process again of IV antibiotics treatment. Within the first dose of treatment the side effects began, chronic nausea and vomiting for hours on end. Excruciating pain and migraines coupled with severe muscle spasms and the loss of any muscle control at times. I don't know how to explain to someone that hasn't been through a life changing chronic illness what it is like to feel yourself slipping away. Or the overwhelming fear when you stare down at your own legs and your unable to stop the violent convulsions. Or the heartbreak that comes with discovering your teeth are breaking off because of the acids from throwing up so much and so often. And in the midst of all of this turmoil, knowing if you could only have access to higher qualified doctors and healers that you could return to a better quality of life; not confined to the four walls of your bedroom which has now transformed into a mini hospital unit.
As it stands now, my doctor has informed me that I am out of options for beating this disease. The ONLY next available step is to check into a treatment facility that is designed to treat the disease and heal my body. I've been blessed in my life to have experienced some amazing and miraculous events. I'm truly grateful for having some of the kindest and most compassionate people sprinkled in throughout my life and over the years with this gruesome journey of living with a life-threatening disease. My fear is that at only 33 years old, after overcoming every struggle so far that this disease will rob me of so many more life experiences that were once in store for me. Or that even worse, I will continue to slowly deteriorate until I'm no longer myself or unable to recognize those I love or them me.
In the meantime, I want to raise awareness about this disease and what it truly does to someone.
I didn’t know that tears could be so big. As I sit here with rivers running down my cheeks forming puddles on my lap, I’m trying hard to convince myself the pain is going to pass. But in this moment the levies of my soul are at maximum capacity and I’m powerless to hold back the flood.
I didn’t know that I would beg God for healing but in the same breath plead for release if THIS is how my life will be. A life of pain and suffering. Baffling medical problems and seemingly insurmountable obstacles at every turn.
I didn’t know that one of the hardest parts to emotionally cope with would be the look of terror, helplessness and pain that I’d see in my parents eyes as they have heard me throwing up yet again.
More heart wrenching than that would be when I’m in tears from the pain and I look into my Momma’s eyes; it may sound crazy but I can physically feel her trying with everything in her to take the pain away. It’s not something I can put into words. I guess it’s simply a Mother’s love for her daughter.
The softness that comes across my Dad’s face during these times calms my soul and often brings out the tears that I’ve been trying to hold back. They both would do anything to ease my pain and make me feel better.
However, the moment that breaks my heart the most is the mixed look of confusion, concern and disappointment when I have to explain to my precious nephews that “Aunt Jessy just isn’t feeling well today”. But oh how my heart soars when they snuggle up with me on the really bad days.
This is why I can appreciate this painful journey. I never knew that pain could ruin so deep, but at the same time when it is allowed to love can run even deeper. Even within the most painful moments if you look closely enough you can see the stitches of love. And that if you open yourself up and share your struggles other courageous souls will take up arms and fight with you!
Some days healing seems inevitable. As certain as the sun rising and the stars shining on a clear night, remission is the only foreseeable outcome. I can picture myself whole again, finishing nursing school, writing a book or books, going out with friends, working, and having fun. Actually living life, rather than just barely managing to survive through the pain filled days and the #Anxiety ridden nights.
Total restoration of health can also seem inches beyond my grasp. Like trying to catch bubbles floating through the air, as soon as I think I have a grip on what’s going on, “POP!”. I’m left standing there, empty-handed and wide-eye looking around, wondering what went wrong. Unfortunately, often blaming myself for not holding the ‘answer’, when in reality there was never anything to actually catch or hold.
Other days healing seems about as likely as me sprouting wings and soaring across the night sky. I hate to admit I have these days. It is when the tidal waves of doubts and anxiety have repeatedly crashed down upon me until too weak to fight against the overwhelming nature of waging a war within your own body and I’m crushed under the pressure. When I can feel the actual physical weight of these struggles and battles, it’s an accomplishment to simply make it through moment by moment until the end of the day and just pray for a better tomorrow. That is the best that I can do and hope to cause as little collateral damage as possible in the process.
On the darkest days, wellness and health are words from a foreign language. Which usually means a day full of emotions, crying from frustration, anger and confusion. Or the other side, actual rage because it seems that the “cure” has been hidden in some encrypted message that if I only had the key; then I could understand what steps to take in order to be myself again, before it’s too late.
The differences in these days is not what you would think. It’s not harder because pain levels are higher or that muscle convulsions are happening more violently that day. It’s not based on how many times I’ve had to run to the bathroom to get sick that day or if I’ve spent all day arguing with pharmacies or shuffled from doctor to doctor. Although all of the above factor into how I’m feeling on any given day, it’s really more based on how loudly I can hear my own Warrior Spirit.
Some days, her voice is so small, so soft and faint that I can barely hear even the sounds she makes, let alone understand any of the messages that I so desperately need to hear. These are the most difficult and by far the most emotional moments. It’s when I feel defeated, lost, terrified, angry and confused. When I want to throw my face towards the sky, open my mouth and just release the screams that are chained up within my soul. Just let go. Allow the tears stream down my face as both of my arms fall to my sides and I collapse to my knees into a broken mess of bruised flesh and burning nerves.
My favorite days, my internal Warrior is ready to take on every diagnosis, symptom and side effect. She’s excited for change and cheering me on through whatever cruel twist comes next. My Warrior is geared up for battle, awaiting orders and ready to start a movement to change the world for Fellow Warriors battling #LymeDisease and others similar diseases!
You can call it “the will to live”, “faith in God”, or even “the hope for a cure” it doesn’t matter which paint brush you use to color the situation because every single one is true. But you’ll be inspired too when you hear your own Warrior say,
“Oh one day, you’ll move those mountains! Healing could be only one more day, week,month or year away…you can’t give up now after all this! It won’t always be this bad. Just make it one more day.”
Trust me, that is some powerful reassurance.
My internal Warrior Spirit has empowered me to accept that some days, we will slay giants and dragons returning home victorious from battle; some days our victory is simply making it through the day. On those days…
Crazy people don’t sit around and wonder if they are crazy. Relax fellow over thinker!
Before I was diagnosed with neurological Lyme, a lot of doctors assumed it was all in my head. It was. Just not in the way they made me feel. I thought I was going insane. No, correction I thought I was Queen of Psychoville.
I couldn’t sleep for days at a time. Eating was a luxury that my body simply would not allow. I would fall down without any warning or prompting. It would feel as if my legs stopped existing. My muscles would spasm so bad that at one point my driver’s license was even medically suspended.
The only answers I was given, lose weight and see a pain management therapist. I was diagnosed with what I saw as “catch all diseases”. Repeatedly told “You’re a very interesting medical case.”. Which I think translates into “I have no clue what to do”. I felt like my life was a twisted episode of Scrubs. On one occasion I had a very highly recommended specialist yell out the door for his nurse to Google information I had given him about the discontinued manufacturing of the iv medication we were using for treatment at the time.
This was circa early 2009, before the “hey, Google” thing happened.
Can you imagine it? Your doctor cracking the door and saying, “Hey Nurse Betty Jane, get on the computer and Google….” Then proceed to leave the room and call his brother that was on some special medical board and chew him out for not letting the doctor know and letting him look stupid in front of a patient. My mom and I the whole time sitting in the patient room trying not to laugh hysterically.
It wasn’t until I was at my darkest moment, when I couldn’t take the pain or confusion or chaos for one more moment that I broke down and was checked into a #MentalHealth hospital. I didn’t have a plan to kill myself. I actually told my doctor I couldn’t do that to my family, but that I was ok if I did not wake up the next day. I seriously thought I had lost my mind.
So, I signed a no harm agreement with my doctor and was released into my Granny’s care in order to be able to get everything I needed for the in-patient hospital I was being admitted to that evening. She just happened to be the one that took me to most of my appointments because both of my parents worked. This was the first person I had to explain what was going on.
I don’t remember everything I said between sobs but I do remember her stopping me and saying, “My little angel, don’t you worry. Granny’s going to take care of everything” as she rubbed my hands that she held in hers and put her hand on my cheek.
We lived about an hour and a half from the hospital and I had to be back by a certain time, leave it to my Granny to turn anything into a shopping spree! She put the car in drive and we were on the way to the store to get soft PJs, slippers, toiletries and whatever else she thought was necessary for me to have for comfort.
I swear that woman is an Angel on Earth. If you have met her I’m sure you will agree. She is the epitome of a Southern Grandma, especially so when I was growing up. You’d have expected her to glide into the room with a plate of fresh baked cookies as doves flew out from behind her on cue to the Angels singing. She would be making homemade breakfast in full make-up and hair perfectly styled that’s right BEFORE breakfast y’all!
Anyways, away Granny and I went with several bags of new soft pajamas and furry slippers. Most of the intake was a blur. Frankly, most of the week was a blur. I remember debating strongly but still losing with a nurse about the violation of privacy with her watching me shave my legs. Yeah, when you’re in the mental ward of the hospital you don’t have that right. I know that now. I also know if you want to make it even more of an awkward moment you should definitely make eye contact.
However, it wasn’t until I was in my last group therapy session listening to an argument over something like a broken crayon with a man who believed he was literally Jesus and another who believed just as much that he was Satan; that it hit me… I had NO IDEA what crazy was! I talked to my doctor the next day and told him to get me out of there now. I had been in the hospital almost a week and I realized I wasn’t crazy, I was depressed. And like my long-time therapist says, “Who wouldn’t be!?!”
Thankfully, I got away from those doctors and the idea of just throwing another medication on the pile.
My dad told me when he picked me up that day that crazy people don’t sit around and worry about their mental health. Which makes sense.
When I saw my new therapist we found after that nightmare again for the first time after knowing I was no longer in remission, we grieved together over the return of disease. We caught up on my current life. Talked about the cold hard reality of what is going on and what the reports have said, but when I asked him about if I needed antidepressants again this time, I was shocked by his reply. “No. You don’t strike me as a clinically depressed person this time around. Your attitude is more like ‘well sh*t now what’. And of course you’re sad, who wouldn’t be!”
We were made to have these emotions. It’s natural to be sad, depressed or even feel hopeless. Even maybe a bit crazy at times. It’s equally just as natural to make jokes, laugh and try to find the humor in the situation. Especially when life hits us with things so far outside of our control. I am using medications as needed to ease the panic and #Anxiety attacks which seems to be the root of my issue thus far. There may come a time when I need to be on more and/or something different but for now I’m just trying to breathe and get through it all.
I’ve learned to acknowledge the pain instead of trying to hide it, even if only I hear it. Accept that the wave of anxiety will pass. And if I sometimes need reminding that I’m not crazy, thankfully there’s this other really great counselor I live with…my Dad and just to show my southern belle side Daddy says, “Crazy people don’t wonder if they are crazy!”. And Granny just in case you’re wondering she’s right alongside me, just like she always will be. My symptoms are worse but my disease has had several years to adapt and damage so that’s to be expected. But I’m wiser and my family is too. Honestly, it’s brought us together. Tough times always have.
The last few days #Anxiety and pain levels have been at an all time high. It started Wednesday when I de-accessed my port and there was a bit of crusty stuff on the needle and the insertion site. After weighing the options with my home-health nurse on Thursday, I decided for us not to access my port just in case there is an infection we don’t want to push it through my entire bloodstream starting with a straight line to my heart! So we decided that’s a risk we just shouldn’t run. Which I then knew meant going without iv medication to stop the non-stop nausea and vomiting.
Started that next morning (Friday) off with my usual sacrifice to the porcelain throne, and just prayed I could keep some medicine down so I wouldn’t keep throwing up. I went ahead and made a smoothie to settle the flames in my gut. And texted my home health nurse.
God bless this lady.
Let me tell you if you know a nurse give them a hug, a massage gift certificate, a smile, some chocolate anything; because they are more times than not our real life guardian angels. This has been especially true with my experience with home health nurses.
I greatly overestimated my ability to keep even a small portion of the smoothie down without my usual iv medication and left a spotted path back to the porcelain throne. I then decide it’s time to change to clear Gatorade and of course with my Anxiety rising, my pain levels are rising as well so I text my nurse… again.
And again but this time with pictures of my port site.
Yeah okay, I know how it sounds now. Don’t judge me. Ha. Ha. She understood in the moment what was happening even if I didn’t. I was panicking.
She sweetly tells me she’s calling the doctors offices again. And that as soon as she hears something she will let me know. But if it gets worse to go to the ER. I know if she could do more she would. I also know she and other nurses I’ve had put in extra time advocating for their patients.
My sister in love (we don’t say in law) comes over and allows me to have the meltdown I needed to have in that moment. I gained my composure and texted my nurse one last time.
My text to her: “Okay so basically I need to chill and if anything changes or gets worse go to ER and call PCP.”
Her answer, “Correct. Let me try them again…”
I’m telling you they are angels without wings.
I managed to keep some nausea medicine down and went to bed early. Woke up this morning again with the usual sacrifice to the porcelain throne. But I also woke up to messages of support and congratulations for my article being published. So I’m going to decide it’s a Good Morning as I sit on this country porch with the sun on my legs and the dragonflies making zig zag patterns in the air. Because yesterday, we thought my view would be a hospital room by the end of the day for sure.
I know the threat hasn’t passed. I’m not delusional. That little post water, fed after midnight gremlin is always lurking about in my mind reminding me of the risks I’m running.
For however long it lasts though, I’m going to soak every bit of this in and save it for the day I may not be able to sit on the porch and enjoy the birds singing, the tractor clanking in the distance and the warmth of the sunshine.
I use Lazarus Naturals CBD Coconut Oil, Capsules and Full Spectrum Tincture because it fit me best after sampling a few other brands.
I really can’t say enough about these products and this company. The coconut oil I like to use topically for pain or any rashes, for example,recently during an outbreak of #Shingles. I’ve seen other people write that they take it orally. They offer a 40% discount assistance program for disabled and veterans! Just an all around solid caring company. You order directly from them, no multi-layer marketing, no sales pitch. Just figure out what works for you. It’s also great for new users of CBD because they have sample packs of their regular and high potency products, which includes sample sizes of the coconut oil, tincture and capsules. I was surprised how long the little sample pack lasted. But fair warning…the tincture doesn’t taste the best. I take it sublingually and then once it’s absorbed take a dab of honey or dark chocolate. Then I don’t have the after taste that turns a lot of people away from full spectrum CBD. Lazarus Naturals recently announced that there is a flavored full spectrum coming soon and I can’t wait to try it out!
I call this my “Blender Blessing”. When I came out of remission and moved home to my parents house I honestly thought I would do one round of treatment, which could last 1-3 months and be back to my life again. So, I put a large majority of my possessions in storage. Flash forward maybe two weeks and it was broken into. When I started treatment again, I just posted on Facebook about if anyone had a blender they weren’t using. This sweet guy gifted me with one he never used that was an even better version by far than the one I had that was stolen! It’s been used at least once a day every day since. It’s how I get about 85% of my diet because of my symptoms and gut health. You can find so many recipes for healing and delicious smoothies online now too. There are even monthly smoothie subscription box clubs as well, so you never have to get bored with what you drink. Personally, I haven’t tried one out just yet, but I’m intrigued.
3. Queen Rose Full Body Pillow
Yes, I realize this is originally marketed to pregnant women. BUT I saw several high rated reviews from chronic pain sufferers and people going through various IV treatments. So I figured I’d try it out. I found mine brand new on a shopping app for half the price of the one on Amazon, exact same thing, so I always check those out because let’s face it…it gets very expensive treating and caring for yourself. I’m already scoping out any deals for when mine wears out. This pillow is that amazing! Here’s the Amazon link just in case you’d rather skip the search:
Magnesium salt baths really help with inflammation and muscle aches. I tend to run low on magnesium, like many other chronic Lyme patients. I like to add lavender to relax me, mint to open up my lungs, and eucalyptus for healing and breathing. This combo is also great for migraines. It’s a perfect time to do some pain management guided meditation and prayers.
5. Essential Oils & diffuser
There are so many healing properties to essential oils. And they are so versatile. You can use them in a room diffuser, necklace, bath, mix with coconut oil or even bath salts for a scrub. I keep a variety on hand.
6. Lymphatic Drainage Massage
I had my first one done a few months ago and was sold right away! Make sure you’re using a certified therapist for lymphatic. I felt assured when I saw that the ladies I’d chosen also worked closely with a local #Cancer center I’ve personally been a patient of in the past. After the first appointment, I texted my massage therapist the following day and told her “I no longer feel like one of those angry birds about to explode!”. Best way I can describe it still.
7. Juice Plus Dutch Chocolate Complete
Again, I do not sell this. You can sign up to sell it, but I’m not interested in anything like that. BUT I tried a few different meal replacement and protein powders. We could not find one I enjoyed the taste of AND provided whole food based nutrition while covering a large majority of my dietary needs. I messaged a friend and asked her “I need to find something that if it’s the only thing I can keep down all day; I won’t have to worry about malnutrition.” She sent some samples in the mail and I tried the Dutch Chocolate Complete first. Simply added chocolate cashew milk, ice, almond milk and the powder. I drank every last drop! Tried the French Vanilla the next day and placed my order for a pack with both. The fruit and veggie chews are really tasty too!
8. Heating Pad and Reusable Ice Packs
Heating pads are available in such a huge variety and so are ice packs. Just find whatever suits your needs best. I prefer reusable ice packs with adjustable straps so it can be held in place. As far as heating pads go, I look for one with a removable and washable cover as well as several heat settings, automatic off safety feature and with extra large size dimensions. You can also pair this with Castor Oil on cloth over your liver under the heating pad for help detoxing.
9. Notebooks, tablet or phone
My biggest therapy has become writing about my experience. The pain, suffering, fear and anger can all pour out of me instead of being trapped inside. It also helps me to find the joy and laughter amidst the chaos. You don’t have to show it to anyone or you can create a blog too. Just release those pent up frustrations.
10. Noise Canceling Headphones and an amazing Spotify playlist
My personal Spotify playlist is very eclectic. This is my “Warrior Mix”. It’s full of songs that make me happy, encourage me, lift my spirits, or inspire me. They are the vessels that affirm my emotions by saying those words I can’t find sometimes or listening to the words that reach out to my soul like a lifeline when I need to hear it the most. Feel free to follow mine or use it as inspiration for your own. I add songs regularly too. So, if you know a really good one that has slipped through the cracks, leave it in the comments. Full disclosure there are a few curse words in a few songs. However it’s all artistically done and not in any way expressed in a vulgar manner.
Why would you pretend to be sick like me, when I’d do anything to be better?
Can someone, somewhere, somehow explain to me why people fake having diseases? Coming from the perspective of someone who is legitimately and extremely sick, “we” (the chronically or terminally ill) spend a lot of energy trying to fake “being okay” a large majority of the time. So, I seriously cannot understand this thought process. When I can think of only a very short list of drastic things I wouldn’t do to get better, why would someone want to pretend to live like this?
I’ve told doctors, “If you tell me to run down the street naked with my hair on fire has been proven to make me better… I’ll do it twice a day and 3 times on weekends!”.
And I meant every word to my core.
If you want to have a serious disease, like one of the many I have, then I’ll be more than happy to give you mine and I’ll in return take your healthy immune system instead any day!
“Good luck, the ole gal ain’t what she use to be and she’s rather high maintenance.”
If I don’t have what disease you are particularly seeking, I’m sure I know someone that does and they would be easily persuaded to give it away as well.
People that are genuinely chronically or terminally ill would do anything for even a few moments outside of the torment they endure on a daily basis. Spending all day laying around in pain and riddle with #Anxiety is no way for any sane person to choose to live. Believe me, your disabled neighbor, friend, cousin, sister, etc would trade places any day to be able to once again function within society. If you told me the only way I’d be able to stay in remission was to continue to work the same amount of hours at the same pace I did at my peak…if it meant having a healthy body I’d sign up twice today!
Think about when you’ve had the flu, strep throat, stomach virus or pneumonia. Didn’t feel like a vacation. You were not just laying around in the pool, grabbing brunch with your girlfriends. No, you were laying on a couch, bed or bathroom floor begging God to make it end and just trying to make it through the week or two it will last. This is my life and many others EVERY. SINGLE. DAY. That’s how Chronic #LymeDisease feels and you want to try to fake going through that? You can’t. Just like a soldier can recognize another without speaking a word. When you have that internal war with your body, there’s a look in your eyes and a certain way you speak. I’ve seen this with #Cancer survivors too.
It shocks me that I have seen these medical charlatans popping up frequently enough this week alone for me to feel the need to openly say something about this issue. I’ve heard about people faking cancer. Which we all agree is terrible. But, why choose a disease like Chronic Lyme Disease or #Fibromyalgia or even #ChronicPain where there is less awareness and less of a community? Just curious…what pleasure do people like this get out of faking that someone you love has become stricken with or even died from Lyme or claiming to have Chronic Lyme Disease yourself? Because, I live this nightmare and have for almost a decade and it’s getting really old really fast to see you wolves in sheep’s clothing popping up with false information!
So please do tell me…what does this accomplish for you?
Why choose a disease that even those that are diagnosed can’t get the help or support they need? Why flood support group message boards with links to fake news articles saying your husband, mom, wife, sister, dog, bird, fish whatever died because they took this medication for that disease? Why do you feel the urge to constantly post pictures that have been clearly edited with the lowest quality tool available, probably something free from your app store, saying these are your horrific symptoms? And make sure to always tug those heartstrings by saying “grandma’s hands”, below a picture that looks like it was only possibly if someone legitimately was able to twist-up sweet old Granny’s fingers just like pieces of curling ribbon with a pair of scissors.
I’m not sure if I’m more shocked that there are fakers or if the astonishment is from seeing people believe them! Even individuals that are suppose to have the disease themselves. Maybe they don’t look past the first few words, in our society that wouldn’t surprise me. I have to just leave it there and hope that’s why support and encouragement is offered. Because otherwise, I’d have to assume that my own community doesn’t know about the reality of Chronic Lyme Disease, Fibromyalgia or #Depression and Anxiety. Frankly, that’s even more alarming than people falsifying illness and even death in my opinion.
On behalf of the Chronically or Terminally Ill Community, I’d like to make it extra clear just in case I haven’t been up to this point…
We have enough struggles to face without dealing with foolishness like this too.
Get a hobby. Ride a bike. Take a cooking class. Read a book. Travel. Go fishing. Bake a cake. ANYTHING ELSE!
Experience life like we have and maybe then you’ll have something interesting to say instead of stealing the suffering of others for pity from strangers.
The good news is this disease won’t kill you quickly. The bad news is some days you’ll wish it would. The worse news is that most days you, your family and friends and your “doctors” will not truly understand what is happening within your own body.
If you’re not quickly dying at an alarming rate, but instead slowly suffering and dying the truth is society and the medical field can stare straight through you. If there is no money to be made, then there’s no money invested in research, treatments, testing or education. If it’s not big and dramatic people don’t even notice anymore.
“Results of these studies suggest that the number of people diagnosed with #LymeDisease each year in the United States is around 300,000.” (https://www.cdc.gov/lyme/stats/humancases.html). How is it that 300,000 cases diagnosed each year is not dramatic enough!?!
That surpasses the AIDS and #Cancer epidemics numbers and people STILL DON’T KNOW! Granted that at the time I was first diagnosed almost 5 years ago…NO ONE knew. At least now there has been some increase in knowledge of Lyme Disease within the public and medical community, but there is a lot of misinformation and even more miscommunication.
The government has not stepped in to set-up any form of regulations that protect patients nor any advocations for their well-being. The ones that were put in place years ago (in the 1990s) are actually hurting us drastically because they changed the markers for positive test results. “a vaccinated person would test negative, clearing an easy path for FDA approval of the vaccine. However, this made it virtually impossible for many of the sickest patients to get diagnosed with Lyme, including those who would have tested positive under the previous standards.” (https://www.Lyme Disease.org/vaccine-chapter-of-cure-unknown/).
All because Big Pharma wanted to sell a vaccine, that was quickly taken off the market when it caused small side effects like LYME! Seriously, it gave people the exact disease it was supposed to protect them from, Lyme Disease! It also gave patients terrible arthritic symptoms. There is a class action lawsuit as a result.
Articles and private medical studies are now being published stating that a person with Chronic Lyme Disease has a worse quality of life and poorer overall health than that of a patient with Chronic Heart Failure or MS.
How much more suffering does there have to be before it is seen for the massive epidemic it truly is within our own nation?
Fellow Lyme Warriors are desperately longing for answers just as deeply as I am, but we both come up empty handed or with a “try this” if we are lucky. When patients are forced to play the roles of their own doctors and specialists, no one wins! It’s no wonder we (the lymies) all may seem a little angry, confused, overwhelmed and even out of our minds at times.
Can you imagine having to figure out your own treatment for cancer, MS, #Lupus, AIDS (funny, all mentioned have large amounts of people that end up seeking alternative, integrative or holistic approaches)? Like right away. No options of treatment centers, no clinics covered by insurance. Just given a few pills, a diagnosis and a pat on the head. I know at one time AIDS was like this and that is something I think should bring communities together. Not the shared disease but shared disregard, disrespect, and even discrimination. I have personally been discriminated because of a Chronic Lyme Disease diagnosis by doctors, pharmacist, pharmacy techs and specialists. I have shared several of those experiences in some of my writings.
I’m telling you, I am living this life and have been for just shy of a decade and it is downright terrifying, exhausting and overwhelming on the best of days. On the worst of days you can literally feel death’s grip tighten around your shoulders as it weighs you down. The emotional, physical, mental and financial toll that this ravenous disease, Chronic Lyme, causes is catastrophic on every level.
Financially speaking the most recent scientific data was from a study in 2002 stating that, “Chronic/late LD = $16,199” of personal costs a year. (http://danielcameronmd.com/Lyme Disease-can-cost-billions/). That was over 15 years ago! I believe it would be safe to assume that figure has risen significantly over time.
None of this is taking into account the fact that a large majority of Chronic Lyme patients, like myself, have several other major health problems as well. From #Fibromyalgia, heart disease, thyroid disorders, autoimmune disease, to #MentalHealth issues like bipolar, anxiety and #Depression. Check each little box indicating you’re experiencing the above symptoms. And now that most treatments aren’t covered by insurance every penny is out of pocket. Especially if you don’t want to or in my case have been told you can’t continue with modern medicine route.
Now we come to the heart of the matter so to say. The emotional and mental torment that this intrusive destructive disease causes is hard for me to even put into words.
Imagine you are putting together a puzzle with a thousand pieces, that constantly change shape and you’re alone…in the dark. But there’s this overhead voice quietly whispering “Tick..tock… tick…tock…You’re wasting time. Time you don’t have to waste.” It gets louder and louder until it or you or both are screaming. And you are in tears from frustration and start throwing the puzzle pieces across the room. But then you begin to panic because you know that you need all those pieces to put yourself, the puzzle, back together. So you go crawling around the room alone in the dark on your hands and knees through broken glass trying to find the missing pieces in hopes of getting any of this to make some kind of sense again.
That’s the #Anxiety, depression, panic and mood-swing invoking sides of this disease. It’s maddening, exhausting and more than anything, “ can be extremely isolating. When you’re chronically sick, you often miss out on a whole lot.”
(https://www.linkedin.com/pulse/10-things-know-when-someone-your-life-has--annie-dance). Couldn’t have said it better myself. I may try and create my own list of 10 things I’d like people to know about my experience specifically, but she nailed it in general terms. If you know someone with Lyme, take the time to read articles like this and the links above. It will help you both understand one another and give you tools to reach out to them when we really need it the most. Because believe me, this doesn’t ever stop on it’s own and those suffering, myself included, we need the support of our family, friends and our community if even we stand a chance at beating this giant.
I’m so flabbergasted by the lack of compassion and kindness towards those suffering from the same disease. It truly baffles me on the deepest level. I would reach out a million times over to extend some ray of hope or share a little laughter. Ignoring everything my own body is going through, even using it as a therapeutic tool in my healing. I wasn’t given a heart like this for no reason and I wasn’t given this struggle without reason.
My hands are literally shaking as I’m writing this, but I just know that these collisions have taken place and have been perfectly orchestrated for a bigger purpose. I’ve been thinking a lot about how in Scripture and literature the souls that are called to a life of suffering are also often called to a life of action. Jesus. Cased closed.
No, I’m kidding but if you look at religious and nonreligious writings the heroes often go through so much suffering. So much pain. But that’s what drives them, arguable forges them into the mighty warriors or crusaders that generations talk about for years to come.
Maybe that’s why I have such a fire in my soul. Such a strong passion to offer up that ray of sunshine, it’s what my thought process was behind becoming a pediatric oncology nurse. If I would possibly be able to brighten just one child’s day. Then that was enough for me.
But maybe the dream is just changing a bit, or coming clearer into focus. I’m not sure but I do know I’m so excited to see where this leads me. I haven’t been able to say that in a long time.
I never would have dreamed I could accomplish ANYTHING while fighting Chronic #LymeDisease and trying to find healing for myself.
I allowed it to handicap me long before it was trying to take over my body like it is now. I gave away my voice, my power, my purpose in this storm.
I still haven’t found it completely. I’m finding my voice, my power and purpose. I never thought any of this would have happened for me personally…Let alone inspire people to start writing about their own struggles with this disease, receive so much encouragement and prayers it’s absolutely overwhelming in the best way possible! Or be able to reach out and bring a smile to the face of a little girl I’ve dubbed my “little PortSister”.
I never thought I’d actually write something or have anything published about my personal journey.
I thought this would be something for me to release my own fears into the void of the internet.
But, I’m seeing a need within my community for a safe haven.
Somewhere to find the encouragement and support, that y’all have given me. I know several of my readers do have Lyme, some have #Fibromyalgia, #Depression, #Anxiety, #Lupus, #ChronicPain, I could go on and on just listing my own diagnosis. Pain is pain.
I don’t see why we have to divide ourselves into classifications of diseases on top of everything else. And then bicker over treatments.
There’s enough attacks within our bodies, let’s not attack each other too.
So here is as far as I’ve made it…
If you have pain, you won’t be hurt here.
If you’re down, I will try to be that hand there in the dark reaching out.
If you have an idea for a treatment, I’ll be that sounding board with kindness stitched into every warning or concern.
If you need support during your chosen path for healing, I got you. No judgements. I won’t tell you how to treat your disease or your body.
If you believe I’ll join hands in prayer with you, if you don’t I’ll send healing thoughts and vibes your way.
If you so desperately need a laugh, trust me I’m sure I can handle that part too.
If you want to cry, I’ll pass tissues. Need to vent…send those paragraph long, novel worthy rants this way.
I’ll agree and help you playfully plan burning down buildings and plot out us showing up to random places with torches to go after the evil doctors that did you or me wrong.
All because of this…
The leading cause of death with Chronic Lyme, Chronic Pain, #ChronicIllness isn’t the disease itself. It’s #Suicide from not being able to handle life with that DISEASE anymore. And I for one will not be one to contribute to this. I urge you not to be as well. If we all come together the burden will feel lighter to all. I REFUSE to throw a stone at my fellow wounded brother or sister.
What to Remember About Your Loved One With Chronic Illness
One day I was extremely frustrated with everything going on inside of me and my inability to explain it to those I love. I had the idea that if I was able to create an easily understandable list, maybe then we would both be able to reach each other when needed. It has helped my family and friends understand how chronic illness and chronic Lyme disease affect every aspect of my life. I hope this will also help someone else like myself – that they may use it as a tool to help those around them understand what is happening in their bodies and minds. 1. It doesn’t matter how often I tell myself, or my family and friends tell and show me that this is not true, but there is always a part of me that feels like a burden. 2. That’s why it’s actually a lot harder than you realize for me to ask for help or even comfort. So offering to do something specific or even just performing a small act of kindness really goes a long way. 3. If I’m distant or disconnected please know it’s not you and it’s really not me. It’s the disease. I’m still here and I still love and care for you just as much. 4. I get overwhelmed with everything going on inside my body and sometimes have to unplug. Other days I may just not feel up to talking. Please don’t take this personally; again, this is the disease and not me. 5. If I’m short-tempered, anxious or even rude at times please just remember I’m constantly under attack from every direction. This can cause my emotions to run rampant. And most of the treatments I go through will only exacerbate my symptoms before I ever seen any improvement. That usually means every symptom physically, mentally and emotionally goes into hyperdrive. Trust me, I know it’s hard on those around me… it’s equally hard on me. I often feel like I am losing my mind completely. 6. Don’t forget about me. When you go through life with chronic disease and have the blessing like I did of some time in remission, those connections mean a lot. Even if it is a Snap or a text, just a simple gesture of love can help a lot, when you feel like you’ve been forgotten. 7. Educate yourself on what it’s like to live with chronic Lyme so you can better understand what someone you love is going through and can even help raise awareness. 8. Saying things like “You don’t look sick” may sound like a compliment to you, but to someone like me it feels like you are questioning my illness and I feel the need to defend myself. 9. If you say you’re going to do something for or with someone who is sick like me… then do it! There isn’t a lot that I can look forward to right now – no dating, going out or much of anything really outside of doctor appointments. So when a promise or plan is made to brighten up the day of someone who is sick… stick to it. It’s often the ray of hope we have been clinging to for days or weeks. 10. Lastly, but really the most important part too. Please keep sharing, commenting, praying and giving as you can. This is neither an easy nor cheap journey. And I need all the support I can get.
Join The Mighty's 2018 Hospital Holiday Card Drive to Send #WarmWishes
It can be hard to keep your spirits high when you’re spending your holiday season in the hospital, going through medical testing, receiving therapy or missing out on celebrations in general. That is why, last year, The Mighty launched its first holiday card drive to remind those who spent their holidays away from their loved ones that they were not alone. We partnered with McLean Hospital and our amazing community sent in more than 10,000 handwritten cards to people facing mental health challenges. It was truly remarkable. This year, we want to continue the Mighty holiday tradition of sending love, support and #WarmWishes to others. We’re again partnering with McLean Hospital in Belmont, Massachusetts, to deliver Mighty mail to children and adults with mental illnesses. We’re also proud to partner with St. Jude Children’s Research Hospital in Memphis, Tennessee, to send messages and artwork to display on TV screens throughout the hospital. Our card drive will be a little bit different this year — we’re going digital! This way, we can reach more people than ever. Be sure to read the instructions below because we’ll be sending this year’s #WarmWishes to McLean and St. Jude two different ways. Either way, though, it’s simple to get involved! Post a Thought to our site, with the hashtag #WarmWishes and either #McLean or #StJude depending on which hospital you want this message to go to (hint: you can send several to each!). We have more detailed instructions below. You can do as many messages as you’d like — in fact, we encourage you to. Let’s spread some love and support. How to Send #WarmWishes to #McLean: We’ll be individually printing all of the digital messages you post for the children and adults with mental illnesses at #McLean on cards with artwork from members in The Mighty community. Please keep these under 300 words for our printers! To send your #WarmWishes to #McLean, start by posting a Thought on The Mighty. In the Post menu, choose Post a Thought. This will open a pop-up window. If you want, add a title for your Thought in the Title field. Make sure to include the hashtag #WarmWishes and #McLean. We recommend signing your messages: Sending #WarmWishes, [ your name ] Write your holiday message in the Your Thought field. When you’re finished writing your message and adding your hashtags, select the Post button inside the pop-up window to finish sharing. You’ll find your post in your Profile. People who follow you and people who follow any hashtags you used will see your Thought in their Mighty Home feed. Submit artwork to be chosen for the front of the cards here. How to Send #WarmWishes to #StJude: We’ll be sending the children and young adults at St. Jude the digital messages you post and artwork you submit to display on TV screens throughout the hospital. To send your #WarmWishes to #StJude, start by posting a Thought on The Mighty. In the Post menu, choose Post a Thought. This will open a pop-up window. If you want, add a title for your Thought in the Title field. Make sure to include the hashtag #WarmWishes and #StJude. We recommend signing your messages: Sending #WarmWishes, [ your name ] Write your message in the Your Thought field. When you’re finished writing your message and adding your hashtags, select the Post button inside the pop-up window to finish sharing your Thought. You’ll find your post in your Profile. People who follow you and people who follow any hashtags you used will see your Thought in their Mighty Home feed. Submit artwork to be displayed throughout the hospital here. We’ll be collecting the #WarmWishes you post until December 12, so submit as many as you can, or send this link to your friends and family so they can send their #WarmWishes too. Help us reach 20,000 messages! Let’s spread more holiday love and support than ever. And because it’s not just people in the hospital having a tough time this holiday season, we may share some of the messages we receive in a future post or on social media. You can also share your art and messages with us on social media using the hashtag #WarmWishes.
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