After years of unexplainable symptoms and doctors visits I was diagnosed with Chronic Lyme disease at the end of 2017. A few of my symptoms included loss of flexibility, chronic fatigue, muscle aches and pains and weight gain that worsened in the last few months. I felt like body was holding me back from the things that I love as professional dancer, dance teacher, capoeira student and aspiring figure competitor. One of the things my doctor told me as I began Lyme treatment is that happiness literally makes you healthier so I've begun to take more notice of the things that make my heart feel full and back away from the things that cause me stress or other unnecessary harm. Today while stretching I was able to make it this far and I wanted to cry because I was so grateful.. because for months and months I haven't even been able to touch my elbows to the floor without extreme pain. Getting this far is huge progress and I'll take all of the positivity I can get. 💚
Hell of a ride... #lymelife#lymediseaseawareness#lymetreatment#lymedontkillmyvibe#spoonie#believe
Door een emotionele breakdown, de weerbots van alle stress rond m'n verhuis en perikelen rond uittreding huurwoning, kreeg ik enkele dagen geleden een hevige aanval. Gelukkig kon ik vooraf nog iemand bereiken die in de buurt woont en die contact opnam met mijn broer. Ik kon op 1 oog niet meer zien en kon niet meer praten en had veel pijn overal.
Toen het woord "spoed" viel geraakte ik meteen in paniek. Want de woorden " weer gezaag over Lyme" en "resum aan onderzoeken" popten in m'n hoofd. Ja, zo erg is het voor Lymepatiënten!
Gelukkig was ik in goede handen en indien het erger werd ging er niets anders opzitten dan spoed, want je weet maar nooit daar het dezelfde klachten zijn als van een hersenbloeding.
Vandaag ben ik nog erg moe van de aanval, hoofdpijnen, zichtklachten en terug meer diffuse pijnen overal. Ik hoop dat m'n lichaam zich terug herpakt. Want Bartonella komt ook alweer gedag zeggen !
2018 was geen goed begin. Maar uiteindelijk heb je zelf in de hand hoe dit jaar min of meer eindigt.
Wegens een emotionele rollercoaster heb ik de laatste maanden m'n behandelplan wat verwaarloosd, alsook mezelf.
Ik heb voorgenomen - dat zodra ik wat bekomen ben- ik m'n behandeling hervat. En probeer ik, na eigen research, extra zaken toe te voegen.
My journey goes on... #journeytohealthylife
January 20th, 2018: Saturday night at the @wholefoods Burger Bar in Chapel Hill. Grass fed organic beef burger 🍔 in a bed of mixed greens, topped with red onion, beet ketchup & roasted artichokes. Also has a side of sweet potato tots! 💋
It was delicious. They have a cute little bar you can sit at and eat, cool industrial lighting, and great inspirational quotes on the wall. It was enjoyed after a trip to wal-mart & @oldnavy, full of crowds and loud people
By the time I was eating this, it was all I could do to keep my fight or flight from kicking in and making my vertigo worse than it was. But I did 💪🏽
I had the same burger Friday night. BF and I were out grocery shopping and it was past time for dinner
We had already been to Walmart earlier that evening & I was still doing pretty well. But after grocery shopping too, I was getting fatigued. I stood my ground with some help from the BF & looked at the menu, searching for something to eat
Trying to get my brain to work, just work so I could eat and sit down. The night was wearing on me. Then I saw the words “beet ketchup” and I knew I was saved. I asked a million questions about ingredients before ordering
My boyfriend whispered to me “you’re doing great babe” as I let out a big sigh, feeling the defeat almost begin to wash over me. I pushed through
I got that burger and when I ate it, I had no worries because it was all diet approved & it was an accomplishment. One more step...
#lymedisease#lymelife#lymewarrior#lymediet#lymedontkillmyvibe#morethanlyme#mindfulness#mindcultivation#moderndayhippyelife @brinyvalentine #brinyvalentine @hibiscusandlyme #hibiscusandlyme#lymelife2018#ebv#hypothyroidism#chronicvertigo#MSIDS#lymejourney#depression#anxiety#chronicpain#reallymelife
There’s a NEW POST up on my blog! All about food, diet and nutrition✌🏼The link is in my bio so go check it out 👍🏼 I’m hoping I’ll be well enough / able to write a new blog post each month to share lots of information with you guys so fingers crossed 🙏🏼 and thank you to everyone who entered my first book giveaway!!! It was so hard for me to choose the winner because I literally wanted to give the books to everyone who entered but I’ve finally made a decision and the books will be going to @blue_angeleyes 🙌🏼👏🏼 I really hope they will help with her recovery from chronic illness ❤️ I’ll be doing another book giveaway soon so keep your eyes peeled 😉
A snow day means organizing your pill supplements. #livingitupoverhere#iknowhowtohavefun 😂 Not included in this picture are all the powders, prescription migraine meds and essential oils that I take daily. This used to be double. Slowly getting the stash smaller and smaller! 👏🏼 I have to remind myself that even slow progress is progress. #slowlikeaturtle 🐢#morelikeasloth
File this under: Things that make me happy! ✨
🏡 I washed my windows yesterday with vinegar, water, & essential oil in my pretty new spray bottle from @shareoils.
🍊 Not only did this cleaner work great, but it smelled nice, is non-toxic, AND it’s so cheap!
💻 I’ll post the details on my blog in a little bit!!!!
What in the world? Broke out in hives on the way to church this morning. The only thing I ate I also had last night with no problems 🤷🏼♀️😓 We stopped at a gas station and got Benadryl and went to church anyway. Fell asleep during service but oh well, at least I was there! If anyone has insight as to why there is no rhyme or reason to why this keeps happening (and my doc says I don’t have mast cell or histamine issues).
I am seriously daydreaming about the life I had before this nightmare began almost 2 years ago. It’s impossible to understand what someone has been through battling this disease unless you experience it yourself. One day I woke up and my world was turned upside down. Approaching one year of treatment has created a time to reflect on the things that have happened over this past year. I’m thankful to have received a diagnosis and treatments that have helped improve my quality of life, but I have so damn far to go. I have grown a lot in ways only this disease probably could have made me. I have wisdom well beyond my years. I’m resilient, I’m more positive, I appreciate the little things and the small victories in life. It’s important to stay positive, and to have hope that you’ll recover, but the truth often is we want our lives back NOW. In a society where we can pop a pill to basically fix any problem in a matter of minutes, this battle to remission seems like a lifetime. I want to be the person I was before, because to be honest, I loved who I was. I was carefree, fearless, and I lived life without boundaries or limitations. I’ve endured enough suffering to last a lifetime, like so many of my followers, and I pray this is the most challenging thing any of us have to go through in our lives. I hope to one day get my adventurous spirit back, live fearlessly, and dream big. This disease may have stolen a lot from me, but I won’t stop fighting until I get that carefree girl standing on the beach back.
Cheers to finding healing and remission in the near future. .
Low quality picture, but high quality date with my husband - our first in months! 🙌🏻 It’s so hard for me to be able to function in the evenings, and then when money is tight because everything is spent on bills and treatment, it’s almost impossible to fit in dates that aren’t free. Our dates usually consist of making dinner together and Netflix, and I’m SO thankful for those, but gosh it was nice to get out and do a check in on our marriage. This man is so handsome and every day I can’t believe he picked ME to spend his life with ❤️❤️❤️
g r a c i e l l a m y f i r s t b o r n has been my partner in lyme, not a fate I'd wish on anyone. But going through this journey with her has given me a compassion for her I might not have had otherwise.
Until we experience something ourselves, we can never really know what the other person is going through.
I'm grateful that I have always been able to fully legitimize her experience because of my own.
And sharing this with my own child reminds me to never let this take over our lives (and she has to remind me sometimes). This is only one aspect of our lives. We are so so much more! And we are kicking ass together!! #lymedontkillmyvibe
My cute walking buddy this afternoon🤓 We chatted about plants, saw a hawk, noticed the shape of the clouds, and just had the sweetest, simplest time. It felt SO good to be outside enjoying the mild weather after weeks of battling the dreaded flu bug in our family. Even I got it. Weeks of body aches, headaches, fatigue, and feeling run over by a truck. Canceling on invitations to social events. Ordering our days differently. Umm, hello flashback to the worst of my Lyme years. (for those of you who don't know what Lyme is like, the flu is a small taste of it, only it never ends) That used to be my every week, every month, never ending life. But I knew by the end of the second week when I was still feeling yucky, that this would pass. What a glorious thought! Just the flu! No longer debilitated for days and weeks. Why? Why was I so confidant? Why am I so thankful? All because of a little pink drink that the Lord used to totally change my life! I gave that girl a piggyback ride today when her little legs got tired. Came home and did laundry, dishes, fixed dinner, all the mundane everyday things you take for granted. It's easy to get back into life and forget how far you've come. The last few weeks was an eye opening reminder of how my life USED to be. And it made fresh thankfulness spring up anew for answered prayer and life changing supplements💕 #lymelife#makingacomeback#busymama#chronicillness#healingjourney#flubug#pinkdrinkrocks#blessed#whatifthiscouldchangeeverything#itdidforme#lymedontkillmyvibe
➡️40% of Lyme patients end up with long term health problems.
➡️Short treatment courses have resulted in upwards of 40% relapse rate. ➡️60% of untreated patients may have arthritis, with severe joint pain and swelling.
8 months after my diagnosis, I will admit that this weird, invasive, frustrating disease has made me happier, more peaceful, more determined and more open-minded. Beautiful things have happened, ugly things have surfaced, and life becomes both harder and conversely, easier when you are committed to moving from sick to well.
Tips for being decent when someone you love (or even like a little) is sick with Lyme.
➡️Don’t tell them horror stories about your grandma’s neighbor’s hairdresser who got Lyme. That shit don’t help.
➡️Ask “How are you feeling?” Just because they don’t look sick doesn’t mean they aren’t sick.
➡️If they start talking about being sick and you want to be like 🙄 just don’t be like 🙄 be like 🤨, 😍, 😚 or 😢.
➡️If you don’t agree with their method of treatment, it’s best to just be like 🙊. Not your body. They need a hug, a lunch, a kiss, a free pass, Patience, a hand hold, a good book, a trip to the movies, flowers, must I keep going? Read: Anything but judgement is suitable. Good job.
When people ask me about living with neuro #lymedisease and how I deal with it, 100% of the time I say "With heightened awareness and management". This morning was a little emotional. I joined my partner and his family down on the beach to scatter his father's ashes. I prepared myself emotionally, knowing it could possibly be a somber event. I sat in silence, soaked up the morning sun and gave thanks for life. It turned out to be a beautiful little ceremony, perfect in every way.
The others said they were going to carry on the ceremony with celebrations and that's when my awareness and management comes in. We headed back home, I went for a swim in the ocean and had a rest. Grateful for the opportunity to be part of such a special gathering and blessed to understand awareness and it's importance in my healing and management.
Guess whose FINALLY got new medication for my PoTS? 😁🎉 I got a call on Wednesday from Cardiology saying they'd had a cancellation and could fit me in the next morning!
It was pretty hectic trying to make the travel arrangements at such short notice, and prepare myself for it but there was no way I was turning down that appointment! Haha.
I was at the hospital for an exhausting 3 hours, pushed myself to my absolute limit, but I got the new prescription! 💪🏻
Took my first dose this morning, and nothing crazy has happened so far, which I'm taking as a good sign. Hoping against hope Ivabradine helps control my PoTS symptoms.
If anyone has any experience of this medication, I'd love to here them!
Also...where would we all be without filters? I don't even want to think about it 😂
This is how I feel after 2 weeks of treatment at Breakspear 😂😩🙈 Every Monday, Wednesday & Friday I’m doing an IV cell repair programme of intralipids, glutathione, omegaven, b complex, & b12 to repair the small fibre neuropathy / nerve damage I have & a folinic acid drip to help methylation issues. On Tuesday & Thursday mornings I do an Iratherm sauna to detoxify mould toxins out of my body & Low Dose Allergy Immunotherapy (LDI) new testing in the afternoons to add new items to my vaccines which could be foods, chemicals, supplements or medications to help me become less sensitive to them and finally on Tuesday & Fridays I do penicillin antibiotic injections to treat the Lyme & strep which are both bacterial infections 🤕🤒😷 Each week I also have consultations with my doctor and nutritionist so it’s pretty full on but hopefully this gruelling treatment plan which makes you a lot worse before you see improvements will all be worth it in the long run 🙏🏼
Over 300,000 people will be diagnosed with Lyme disease each year. That’s why awareness is so important!
You don’t have to know how to #knit or #crochet to join us in raising Lyme disease awareness. Installers are needed too! They get to sew a sweater on a parking meter! 😊
Don’t sew? 🤔
A demonstration is given on the morning of installation day. Installers are each given a bag of #lymeyarnbombs and then they spilt up down the streets to dress the town in sweaters! Yarnbomb for Lyme is yarn graffiti for hope! Please contact us if you would like to be a part of our fun #lymediseaseawareness campaign in any way!
3 towns are participating so far in the Spring!
Businesses who sponsor us have their logo displayed on weather proof parking meter tags for one month; they are listed on our website; and logos are placed on a reusable bag given to volunteers. Be on the squad! Join the Lyme Yarnbombs Squad! 💚#yarnbombing#yarnbombforlyme#yarn#knittersofinstagram#crochetersofinstagram
Current Yarnbomb for Lyme event sponsors are:
The International Lyme and Associated Diseases Society (LADS)
Lyme Disease Association of Southeastern Pennsylvania
Royal Pest Solutions
Our events are only made possible by sponsors and volunteers! We appreciate you! 💚💚💚💚💚💚💚💚