Oh how I love this time of the year…It’s always breathtaking to see these.

I am unsure as to when I got Lyme disease. I do know that before I was an adult; I experienced random phenomenon now and then. In 2014, I began to have nonstop recurring infections. In 2016, I had a mental breakdown that caused me to try to commit suicide, and the following year I became bedridden and have never been well since.

I have since developed all of these below. Please continue spreading awareness in hope to prevent another warrior forced to learn how to survive.

Tinnitus, which is ringing of the ears. Thankfully, it’s relatively harmless, but extremely annoying and can be a bit nerve wrecking. B12 and Vitamin D deficiency. Mine are always on the extremely low side and if you research more, can cause a LOT of neuro/motor problems ontop of the ones you already have.

MTHFR C677T. It’s relatively common from what I’ve seen in or community. It is a genetic mutation. It is extremely confusing to explain personally because it’s all genetics and big words when you try read on it. The most simple explanation is that MTHFR is a critical enzyme in the body. It’s required for a metabolic process that repairs DNA, switches genes on and off, and numerous other important functions. It is essential to convert folate and folic acid – each a form of Vitamin B9 – into the biologically active form called L-methylfolate .

Seizures. I never once had a seizure in my life up until 2018. Sadly it is extremely common in patients with advanced lyme. This can range from grand mal seizures, to focal and myoclonic seizures, to even body tremors and spasms occurring. Not only is it dangerous for us, our brain, it limits and rips us from driving by law.

Chronic gastritis. I think I developed it because I had to use so many antibiotics but I’m not so sure. I have had gastric problems for quite some time. I had to have my gallbladder removed in 2013 or 2014, just before my son was born. I have acid reflux, IBS, an esophageal hernia, bloating and cramping, and periods of extreme nausea and inability to eat. My kidneys are now extremely effected.

Skin and hair. I had never had issues with either before except for mild back acne. When you are treating lyme , the toxins try to escape your body. When you don’t detox enough, it can really affect your skin, causing breakouts, rashes, cyst like acne that is painful, scarring, and so much more. My hair had to be cut last year because I was literally having it fall out in chunks all while being incredibly uncomfortable. I have had extreme itchy spell problems that I usually chalk up to anxiety because I’ve had it since 18. However it’s possible it’s related to lyme as itching and scratching are common. I have also developed severe allergies, and have mast cell activation disorder (allergies basically.) and HAVE to have antihistamines.

Blurred vision. This one thankfully has improved since my journey with lyme. But it still is an issue. I have moments where everything slows down a bit and it can disorient me from being able to process how far or how close things are. This has lead me to run into things, stumble because I missed a step, to more serious issues where it would happen while driving and I’d have to pray nonstop and go extremely slow, trying to get home safely. I also developed photophobia, which is sensitivity to light. If you come to my home, my curtains are never drawn. I have on occasion attempted to open curtains only for my eyes to wince in pain and my head to pound and I get disoriented because what used to be simply daylight for me is now like a large spotlight in the theatre beaming down upon you. This leads me into my next set of issues. Migraines and headaches. I have had maybe one or two on occasion in my life. But migraines? Very very uncommon for me. When I got lyme that was paired in one of my first symptoms and it was so extreme I had to take migraine meds whereas in the past a little food or a nap would kick it to the curb.

The heart. This is where it can get ugly for many, and most. Lyme has been known for something called lyme carditis. This can interfere with the normal movement of electrical signals from the heart’s upper to lower chambers, a process that coordinates the beating of the heart. The result is something physicians call “heart block,” which can be mild, moderate, or severe. Heart block from Lyme carditis can progress rapidly. Many of my friends have pacemakers because of this, and many have died because of it. I as of now have not developed lyme carditis. But I have developed tachycardia, which is where your heart beats way faster than normal. Mine has gone up to 175 beats per minute, which is extremely fast. The “normal range” is roughly 60-90 beats per minute.

I have also developed moderate mitral valve regurgitation. In mitral valve regurgitation, blood leaks back through the valve. It doesn’t just flow forward into the ventricle the way it should. Because of this, the heart has to work harder than it should to get blood out to the body. If the regurgitation gets worse, some blood may start to back up into the lungs.

My lungs. I have a 6mm (last a checked about two years ago I believe) nodule in my lung. I have developed asthma, which I never had in my life! Often I will get so terribly out of breath from simply getting up from the couch and heading to my bathroom. My blood pressure drops dramatically and will leave me dizzy and disoriented. This has caused me to be diagnosed with Postural orthostatic tachycardia syndrome. That along with developing vertigo, where it feels like the ground is shifting, I have collapsed many times from. I am very fortunate I am generally not somewhere unsafe when I fall. Other times, about 90% of the time, I have to hold onto the wall and railings and I walk extremely slow.

That shifts us into my motor function. I can’t open jars, bottles, and sometimes even cardbox boxes or boxes that food comes in. I am very weak and have no strength. With that, I also have hands that tremor badly and have arthritis . I often cannot open car doors well, and my iron glass door to the patio is a nightmare for me. My hands also will lock up and curve towards the palm slightly at times. I often have severe spasms out of nowhere that makes my body jerk. I have degenerative disc disease as well and neuropathy which is the loss of feeling in your arms/legs or both and often you have a prickly sensation or feel like your extremities just go to goo. This causes me to drop things often, if I don’t drop myself. Many times I have been so weak that I’ve had to be carried inside or lifted completely from a sitting position to a standing position. It’s embarrassing at first and maybe for some forever because it is that feeling of being a burden, but I luckily no longer feel that way and just make the most out of it all. I have since procured a cane, a walker and a wheelchair that help me out depending on the situation and how my body is doing.

My bladder. My bladder is either never working, or I am in the bathroom every 15 minutes it seems. My bowels have always been inconsistent since lyme as well, either being extremely constipated that I need medicine to correct it , or having diarrhea and needing meds to correct it , let alone my issue with being dehydrated often. I have often peed myself, which might be funny maybe a handful of times in your life, but is not fun when it’s a daily problem. My bladder seems to be as strong and reliable as a two year old who just has been potty trained. If I do not have a bathroom the minute I feel it. 8)-?3 about 5 maybe 10 minutes max before I HAVE to go. In public settings this is extremely stressful due to the fact that many places only have single stalls, and some businesses will only allow you to use a bathroom if you are a customer, and some won’t allow you even then. It is definitely a challenge.

My reproductive system. I get hot flashes. My body will go extremely hot or extremely cold and I’ll be drenched in sweat or shivering as though I was in a freezer. I began developing cysts that would come, burst, and repeat. The further along the years passed, the worse my symptoms became. I was having periods twice a month, and never, ever were they consistent, which was exhausting and expensive. I had severe cramping and I developed extreme stabbing pain on my right side frequently, and it made enjoying sex impossible. I was in the hospital a few times for this issue and finally they said I have either fibroids or adenomyosis. It was adenomyosis. Adenomyosis is a condition in which endometrial tissue exists within and grows into the uterine wall. I ultimately got a hysterectomy and it has improved everything at least with the above issues I had.

Exhaustion. I have myalgic encephalomyelitis, also known as chronic fatigue syndrome, and fibromyalgia. You don’t know how exhausting being exhausted is until you live with it day in, day out, hour after hour, second after second. The pain levels I have dealt with throughout it all has been insurmountable.

I will end this on my brain. I have so many diagnosis it’s not even funny. Some I didn’t bother to write in because most of them have the same symptoms as other diagnosis I have. I have speech problems. Aphasia, where you cant seem to remember the word. That is very frustrating for me. I know it and I just can’t get it out. Many times loved ones, even my children, have to do a guessing game when I am overwhelmed and trying to communicate what I was thinking . Before treatment, I was getting lost in places I had frequented since a child. Places I knew like the back of my hand suddenly would get me turned around. My speech can slur often and I had a stroke situation in 2017. I always fail the neuro tests. When neuro saw me, they had me sit in this office for HOURS (it was a nightmare) doing this memory test and it tested that I was showing the capability of someone who has Alzheimer’s. A lot of symptoms I have also coincide with ALS. If you look into research, it’s been proven that Alzheimer’s and ALS brains that were examined had the spirochete (which is the lyme ) in the brain. My memory is gone. It used to be such a great memory but I simply cannot anymore. Sometimes I have people who look at me crazy because I can’t tell them what I had for breakfast, or what I did just hours earlier, let alone a fond memory we once shared. Im not a blank slate, and sometimes my memories come back in blips. This must be how it is for Alzheimer patients, and it’s truly a sad decline. Often I will forget what I’m doing and just stare trying to will what I needed to get done back into my head.

This disease is a cruel one. It takes and takes. Please continue to share, read, protect yourself and your loved ones so that when the signs begin, you hopefully can attack this before it becomes debilitating. One great piece of advice I’ve been able to remember is this. If you seem to keep getting sick. But medicine that should be fixing whatever illness you may have, isn’t working, to start questioning and seeing if you’ve been consistently sick nonstop. It also pertains for those who suffer immensely psychologically. If someone with schizophrenia, bipolar disorder, borderline personality disorder, depression, has tried absolutely everything and NOTHING is even touching that person and isn’t benefiting them whatsoever, to start looking. Lyme is a trickster, an intimidator, and cloaks itself when necessary. Something like mental health is not left untouched with lyme, and some warriors stop having manic episodes, hallucinations, ect if they’re fortunate to put lyme into remission.

Educate. Prevention. Early detection.

I didn’t lay you inside a tomb

I didn’t put you’re urn away

And it took five years to decide

So I kept you with me everyday

On your fifth birthday I spread you through

That old park mommy loved taking you to

It’s where the love of your dad and I

Blossomed and so I finally could decide

It was quiet and it was cold

Snow lightly lay on the floor

And it was slow , aching and sad

As I spread you through that snow covered grass

But see now mommy visits many days

And you remind me always

And even if it’s just for five minutes or so

Every year the snow falls by my side like this

It fell moments after you passed

I held you tight until you left this world

And when I looked outside that window

Some flurries past as if you tried to say “It’s alright. I’m here. Don’t cry”

It didn’t snow quite here and it rarely does

But still you showed yesterday to comfort mom

And you may be 8 years old today

Watching over me and the siblings

And you’d think 8 years makes it alright

But no matter what it’s like a knife

Dear Sophya Gisele, my love

I may not have been a parent

But you were the first to make me a mom

And as I sit with tears in my eyes

Please know baby, moms alright

And she’s struggling now but I know you’re there

Please take care of Rocio and Aaron

Watch them as mommy gets better

You’ve watched me all the years my love

And daddy just had a baby too so watch over him and his loves if you could

So don’t forget you’ve got not one

You’ve got many many people to always love

I finally was able to get myself a seated walker; I was told it may have helped me better because it would force me to be more mobile while still giving me the opportunity to rest if I feel like I couldn’t keep going. It has seemed to help my walking a LOT and even though I’m still taking a lot of breaks and becoming breathless , I’m moving a lot better and it makes me want to move more as well. It isn’t harsh on my arms or legs, and doesn’t mess my hips up or slow me down. I’m hoping this will have me eventually walking more normally soon the more I get my body used to walking for longer distances.

February 23, 2017 I have done a ton of things before falling ill, and for taking advantage of life like that, I am grateful. Currently, this is what I have done.

Repelled off 100 foot tower, off a helicopter, flown a Cessna, assisted in the search and rescue of a downed plane in West Virginia, horseback rode for 5 years and won awards during jumping competitions and other shows, did dog shows with my middle school teacher with my then dog Phoebe, trained dogs, assisted in a soup kitchen, did a church event with friends way back when that was quite the experience, took fencing, was on the swim team in my local neighborhood swimming pool, went to New Orleans with my high school and a few others from the school to help rebuild homes and help those affected by Hurricane Katrina 6 months after the hurricane hit (it looked as though it had been hit the day before), camped out in Louisiana with Peace Corp folk, went camping in Delaware, Virginia, and Boston, saw multiple broadway shows in New York, did jazz, bellydancing and pole dancing, was in soccer and basketball. My favorite out of all would be when I learned how to box. In middle school I was on the track team, played the trumpet and was in choir, and in musicals and even performed a duo from my choir and was in the church choir as well. I self taught myself piano and the guitar. I was in the SCA (Student Council Association) and Yearbook committee. In high school during the time I was in a private school I was in the school band. It was awesome, we even played at a local event. I have been to countless events in DC, been to all the museums there since a child (you take for granted the fact that DC is the only place that museums do not cost money to get into), have been to about half of the National Parks in Virginia, have been to every single Northern Virginia National Park, have explored some parks in Maryland and DC as well. I have gazed under the West Virginia stars, and worked on my dad’s farm in Richmond growing up, being exposed to all sorts of animals and learning how to fish and do farm work. I have gone to multiple zoos throughout the Eastern coast, I have danced at weddings, I’ve gone karaoking, I have traveled, I have owned my own place, I lived on my own since 18. I have seen the beauty of the many different states, and so much more. I had three beautiful children naturally, one who passed away in my arms less than half an hour after birth. I have known love, I have known loss, I have been in love, and I have been loved. I have known betrayal, I have been physically and sexually assaulted, I have learned forgiveness, I have learned when to fight and when to be silent, all while always working and providing for my little family. I have learned so much just by being a parent, and continue to learn daily.

To say I haven’t lived, to say I haven’t experienced, to say I have done nothing with my life is FAR from the truth. I’m so limited on my capabilities. I thrived on hiking, on going out every weekend with the kids and being out from day to night. So now, I must look at life in a different way.

Yesterday was awful…I was throwing up, shaking, my tremors were awful, my leg became so weak that not only did I need a cane but I needed help getting up.

I couldn’t put my shirt on by myself. I couldn’t control my bladder I couldn’t hold my head up and my hands were completely non functionioning so I couldn’t hold a cup in my hand even. It was truly scary.

I was unable to text and eventually unable to talk only make groans. I ended up sleeping as soon as I could stop throwing up, but I threw up the entire day so much that I couldn’t even take my regular Meds.

It was a scary, humiliating, wanting the pain, the fighting, the agony to be over kind of situation. I am glad that even though I feel wiped out, that I do not feel like I did yesterday. It was definitely in my book of my worst days. In fact , my worst as I couldn’t even text or keep my head up, my entire head felt swollen. I couldn’t use my legs or arms at all.

I don’t know, I just don’t know. I’m so exhausted, I am thankful to be alive…And I’m thankful to not have my days be like this everyday like before…But I am so exhausted.

A photo is so full of falseness. You cannot see my heart racing at 115 while resting. You cannot feel the pangs of shooting pain on the top of my foot. Or the burning feelings my hand has right now. My migraine has been on and off, but you can’t see. I can sit and smile at a camera up until I don’t notice it pointing my way.

I am not that person who posts for you to feel sorry for me. I post so that others understand, I know what it feels like to not look sick. And I know what it’s like to grin and bear it in front of loved ones. I know what it’s like to try to desperately appear normal when you are just battling the nausea that you’ve had for the past hour.

I know what it’s like to be tossing and turning, wondering when will you sleep.

I know what it’s like to be curled up in a ball on the floor, praying God takes away my suffering.

I know what it’s like to cling to faith, and have my faith tested, and to be angry sometimes because I can’t understand the big picture of such a long journey of suffering.

I know what it’s like going to doctors, and having your labs looked at, and words like “I wish I had labs as good as you.” And told I’m healthy and sent away because they are too busy with people with the clear textbook issues to deal with me.

I know what it’s like to be told to just meditate, listen to music and do yoga.

I know what it’s like to be treated like a psych patient.

And yet I don’t know exactly what it is like for you personally. And that’s why I share my story. So that others aren’t afraid to share theirs. I’ve only begun my journey and I’m sure it’s gonna be a long one. But I do know what it’s like to have such an amazing support group, and not only have my own friends rose above and beyond for me, but so has the spoonie community.

No matter how difficult the road is. Find that one thing that doesn’t dull your shine, and cling to it. Cause you’ll need it when you’re curled up at 5am wishing you weren’t alive. You’ll be wishing so much when it’s your 30th doctor visit for the year. You’ll be thinking irrational thoughts as you stare at however many pills you take to stay semi functional. You’ll sit there, and you’ll think…What’s the point? Why do we keep fighting only to be not taken seriously? Why fight only for tomorrow to be the same or worse?

And that’s when you’ll need whatever it is that you need to keep on moving forward.

Trust me, I know the feelings of hopelessness, I know the days where it feels like it will never change.

Never give up fighting. You are beautiful souls struggling to live with an ugly disease. It will try and strip you of everything. And some days, it may win some battles. Just don’t let it win the war.