This cause is truly so incredible that it sounds too good to believe. The wild thing is though, it’s not. Mara Williams (who guest posted here on Lyme Chick 6 months ago!) is the founder and CEO of this amazing vision, Inanna House. She is also a Nurse Practicioner and Energetic Healer who has worked as a healthcare provider for over 30 years. Oh yeah, and she wrote this stunning book, Nature’s Dirty Needle.
The always inspiring and awesome Sarah Lamando (of A Slice of Lyme) created this campaign in a tireless effort to fundraise for Inanna House; A supportive and safe place for Chronic Lyme patients to receive treatment, while integrating the best of all health modalities to achieve optimum results for each client, which includes a body, mind, and spirit connection and reintegration. Which she is fiercely fighting to see built.
Sarah and I collaborated to illustrate just how extraordinary The Inanna House has the potential to be, if we are successful in meeting our financial goal… That’s where this video came in to play. We both are keenly aware of how staggering and financially crippling the cost of this disease is. We also both would have given our right arm to have had access to a place such as the Inanna House at the start of our battles with this disease.
Put simply, ANY amount helps. If you are unable to contribute please watch and share the video. We can do this. This is within our reach. And we owe it to each other and ourselves to make this a reality.
Find Inanna House here too:
This is something I’ve never written about or shared with just about anyone. And now I finally have some perspective as to why that is. When I started this site just over two years ago I finally was embracing my diagnoses and trying to make something positive out of it. I wanted others to not feel as alone and helpless as I had.
The moment I started this site was also the moment I stopped being in denial: this was my first step in what I believe is a crucial part of every Lyme Warriors recovery; Acceptance.
The first 3 months after my diagnoses I was in complete and total denial. I am ashamed to admit how ignorant I was. How close minded and sure of myself. Sure that I was right. Sure that this mystery ailment was mono or a prolonged virus or a result of exhaustion and that it would go away tomorrow, or the next day, or the next day.
I don’t think I am alone in this. I don’t think anyone wants to face the facts when it comes to this sort of diagnoses. This murky undefined world and all that comes with it when you’re stamped with this diagnoses. The never-ending controversial aspects, the stigma, the treatments that sometimes do more harm that good, the treatments that do help but cost you and your family money that you’d hope to use for something else, and my favorite, the doubt and disbelief from people everyday that Chronic Lyme even exists.
Taking this all into consideration it is easy to understand why one would go into denial. Who wants to face all this overnight? But I believe that accepting and embracing your diagnoses and the temporary bizarre Lyme world that you are living, is the first healthy step to recovery.
So here’s my video to Lyme Chicks and Lyme Guys out there. Accepting this doesn’t make you weak. It doesn’t make you fragile or beleaguered or pitiful. It makes you incredibly strong and resilient and tough. It makes you a fearless fighter.
I have often wished that I had a spiel or speech memorized to spew at people about my daily life with Lyme and all that it entails. A quick summary I could give them that could hopefully get them not only to understand, but also serve as a subtle way of warning them that friendships and relationships with people with Lyme can be trying and difficult on both ends.
For us, all we want is empathy and compassion. We want to be cut some slack in advance for the inevitable ways in which we’ll unwittingly let you down. We want you to understand that not calling or emailing back wasn’t a dig, it was because we couldn’t get out from underneath the covers. We want you to understand that ‘looking good’ is in no way equivalent to feeling good, nor is forgetfulness equivalent to not caring. I could elaborate, as could all Lyme Chicks (and we did) but the one side I admittedly never gave much thought to was how hard it could be on the friend, or boyfriend, or girlfriend, or parent of someone with Lyme…
That was the thought that sparked this video.
This is dedicated to the friends and family of all us Lyme Chicks, the people that have so graciously taken on the confusing and mystifying universe of Lyme disease with us. The ones who stood by us and attempted to understand what we couldn’t even begin to explain. This is for everyone who’s been left confused and hurt or completely baffled as to how to be a friend to someone with Lyme. This is for everyone who’s put in the effort. Thank you.
Thoughts from other Lyme Chicks
“Expect a strong willed person who through the tears and suffering always pulls through. Expect to want to do everything for her, but also rest easy in the fact that she would rather do things herself. Expect someone you would be very proud of.” - Strep Thrd Degree
“Expect a friend who may still seem normal at times but may seem totally strange at other times; a friend who is hurting, more than words can describe; a friend who wants to still be there for you and do regular things but who may be limited in doing so at times; a friend who is having to work really hard just to do the simple things like get up out of bed in the morning; Sometimes people are afraid to talk about Lyme and sometimes people don’t know how to talk about anyone else. Expect that your friend is going to have ups and downs, good times and bad times, that one doesn’t just ‘get over the Lyme’ – it’s a whole long awful process. Expect that it may be tough to be her friend at times but that she needs you very much.” - Melinda McNamara Kassing
The past few weeks have been insanely busy with the holidays. I’ve been busy in a way I didn’t know I could be. I didn’t know I had it in me to shop, and wrap, and ship gifts but I’ve done it! And I found the time (although YouTube definitely didn’t make it easy on me) to make two new videos for December. So, 3 days and 4 headaches later (thanks again YouTube) both videos uploaded. The subjects being two that were very popular on the Lyme Chick Facebook page & emails:
Herxing & Detoxing and Coinfections
Enjoy. And Happy Holidays! XXO ☃
It dawned on me yesterday that sometimes words aren’t enough to express what we go through. Words can easily fall short of the hell we endure. Words can fall on deaf ears. Images aren’t quite as easy to ignore. And that was the inspiration behind my new Lyme photography series. It seemed natural to combine two of my passions, photography and Lyme advocacy.
These are the first photographs in the new series.
©Lyme Chick 2o11. All Rights Reserved.
Here’s a little something I hope all Lyme Chicks will appreciate! These products have helped me on the days I look truly scary & at death’s door. They’re super easy, quick, and make-up-free-fixes because most days, makeup and the effort it entails is totally out of the question for me!
1. Stay hydrated
Staying hydrated is absolutely crucial for Lyme patients anyway. It’s essential to detoxing, pushing toxins through, and overall balance as our bodies are, on average, 60% water. But its benefits can also immediately be seen in your skin, eliminating dullness and dryness. I drink about 64 oz of water daily. In my opinion, it’s absolutely vital for accompanying any Lyme treatment. And has the added benefit of skin-brightening… so drink up!
2. Fake an 8 Hours Rest
My eyes seemed to be prone to puffiness and dark circles before I even knew of Lyme, but over the past 2 years the zombie circles have been exacerbated beyond belief and I’m constantly on the hunt for products that might give the illusion that I’ve gotten a full 8 hours (or that I’m not chronically ill) I’ve tried everything under the sun, but Kiehl’s Midnight Recovery Eye which I apply before bed, in combination with their Facial Fuel Eye De-Puffer really has done an incredible job of helping the dark circles! *Please Note: I am not endorsing Kiehl’s nor am I affiliated with the company, just a recent fan. There are many similar, fabulous, less expensive drugstore products that work nicely as well!
3. Quench that inevitably dry skin!
My skin has become even more sensitive as well as dry since Lyme. It’s pretty ridiculous, it breaks out in a rash if you look at it the wrong way. My lips in particular are ALWAYS dry. I put lip balm on 10x in an hour, easily. Regularly moisturizing your skin and lips is an easy, effortless step to looking rosier and healthier.
4. Dry Shampoo
Dry shampoo is seriously my best friend. (right after Zofran!) It is an absolute lifesaver on days when a shower is out of the question. It’s intended to be a quick fix, so don’t expect the results to last for days. But for those emergencies when a doctors appointment or an outing is looming- spritz this on and go. It’s a match made in Lyme Chick heaven.
Toner is lovely, in that it’s a super quick method to cleansing your face. Especially when not near a sink or too sick to get out of bed. It comes in handy under many circumstances, particularly when I was in the hospital, a swipe of toner refreshed me and made me feel a little less guilty about being unable to wash my face. An added bonus is choosing one with a soothing scent, I like rose and lavender.
So consider giving these a try the next time the mirror scares you… but on the days you can’t, be sure to own your appearance, whatever it may be that day. This is (temporarily) a part of what makes you you. And Lyme Chicks are fearless fighters. The first priority always being, kicking this!
This is a long post- filled with my latest Lyme adventure. Feel free to skip to the bottom and just watch the video but if you’re anything like me and frequent the ER often, this might prove useful knowledge to have in your arsenal.
November was quite the month for me. Some of it was fantastic and wonderful with beautiful weather and decent days where I was able to leave the house. And then smack dab in the middle of the month, literally, on the 15th, things turned dark.
There was more in store for me this month than sunshine and pain-free days. Although I’m still grateful and appreciative of those too!
Sunday the 13th at midnight I doubled over in excruciating pain. My lower right abdomen was searing with pain so intense that moving and even the inevitable car ride to the ER was out of the question. I tried to sleep unsuccessfully but by Monday I was back in what has become a very familiar setting, the ER.
I was tested and tested, poked and prodded, cold, scared, and in the most pain I had ever experienced. At the end of the night, there were still no answers. I had no telltale signs or symptoms of appendicitis, aside from the pain. My white blood count wasn’t high and as far as they could tell my appendix wasn’t inflamed. An ultrasound revealed two ovarian cysts on my left ovary but none on my right… still no explanation of the excruciating pain.
I was admitted Monday the 14th and told the surgeon would come sometime in the morning. I wasn’t allowed pain killers in case the pain were to become severe enough to indicate a ruptured appendix. I wasn’t allowed food or water, which was bearable because I didn’t have an appetite, but it was adding to my overall weakness. It was misery waiting for the surgeon to show his face.
10 AM Tuesday morning, the surgeon finally appeared. It sounded promising at first, he assured me I would operated on that day but made it clear that I wasn’t anywhere near the top of the list. He had many surgeries lined up and I would be fit in somewhere.
Agony. The waiting had become too much. I was sleep deprived, in piercing unrelenting pain, not allowed painkillers, food, or water. And waiting 18 hours for what is supposed to be an emergency surgery? This is where my lesson to you comes in to play, listen up:
Should you ever find yourself in a similar situation, in the hospital too weak and broken down to speak up for what you need. PLEASE do these two things for yourself.
1) Never be afraid to voice what you need.
I learned this the hard way. I’m in the habit of keeping quiet and suffering in silence. Of smiling through pain and making things easy on others. This is stupid and can be very, very destructive. If you’re in the hospital, chances are the stakes are very high. You need to be thinking of yourself and only yourself. You need to be selfish under these circumstances. This is your life and your health and you know best what you need. It wasn’t until I started screaming and crying 18 hours into my stay that I was listened to. But even that wasn’t enough- and this is where my other lesson comes in, and this is absolutely crucial.
2) Have an advocate.
Even pleading and crying for the surgery to be moved up, in the fear that my appendix would rupture wasn’t enough. And this is why I’m so beyond thankful for my advocate, my mom. She did everything I couldn’t and probably wouldn’t. She got in the nurse’s faces and called everyone she knew with connections to the hospital. She spoke up for me in a way I never could of, and guess what? The surgery was moved up immediately. I was taken to the OR 4 hours before the scheduled time. If there’s one thing you ever hear me on, please let it be this. Always have an advocate with you in the hospital. Someone whom you love and trust to speak up for you when you are unable. It absolutely makes all the difference in the world. Thank you Mom!
And… with that here is the new What to Expect video. You guessed it, the topic being appendectomies. This is a little late for the month of November but this is meant to be November’s second WTE video. There will be two more for the month of December so please keep the ideas coming! Email firstname.lastname@example.org for video suggestions.
I am a Nurse Practitioner. Three years ago I was working for an integrative doc who discovered her daughter had Lyme disease. She decided to begin treating it and spent a few weeks with some LLMD’s. Anything that she did I needed to learn as well so I dove in to learning, listened to ILADS workshops and studied power points and read what I could find. Needless to say I was stunned by the politics and the horrific marginializing that our current system has done to CLD people. I eventually left this practice and moved to Gordon Medical and began what I call grad school for CLD and other biotoxin illnesses. Then about 1 1/2 years ago I discovered that Amanda, my daughter, had CLD and probably for over 20 years with activated disease. She fell full blast into being gravely ill and our journey began in earnest on Sept. 26, 2010 when we went to the ER for the first time for unrelenting vomiting and dehydration. Since that first visit to the ER we have been an additional 16 times, with 7 inpatient admissions as well. We tried different hospitals but they were all the same. It matters who the doctor is how you are received.
It was on the 7th trip to the ER that I realized that Amanda was not going to get any support or treatment for her illness. All they would do is get the vomiting under control and give her IV meds for a few days until she could take oral food and fluid. No antibiotics, and no diagnostic work up after the initial CT scans and labs. As with most people with this disease, Amanda’s tests were all negative. One doctor wanted to diagnose Fibromyalgia, another Rheumatoid Arthritis, and most just saw Amanda as a psych case and me as a drug seeking and interfering Mom. One doctor asked me if we had followed up with a Psychiatrist yet as that would be the best route, and this while Amanda was vomiting and in so much pain she was delirious. Twice she was given only 2 liters of fluid when she needed at least 4-5, and we ended up back in the ER the next day. Some would refuse to give her narcotic even though she was on an around the clock dose of Morphine for her pain and had gotten no medicine for several hours because of the vomiting. This would make her symptoms worse!
I then knew that what was needed was a center where those with tick borne disease could go for treatment and support in a compassionate setting and get care as if they were in a hospital with 24/7 nursing care and other support. I began talking to friends about Inanna House and how I envisioned it. One friend told me I needed to write a book so that I would have some clout as I presented a business plan to those with the resources to fund the center. So I wrote ‘Nature’s Dirty Needle’ and got the idea of describing what it is like for those with Lyme , their families and friends, and how it impacted their lives on all levels. I wanted the book to be a resource for those still undiagnosed and family members who did not believe their loved one, thinking it is all in their head. To read story after story with so many similarities brings home the reality ofChronic Lyme Disease and how devastating it is for everyone concerned.
I have been asked many times to do another book with more stories so after Inanna House is complete I plan to do that and include all the success stories we will have to tell.
Inanna House will be a place of hope, healing, and peace. I envision a retreat like setting in the country, private rooms, safe pathways for walking, a pool and hot tubs, an infrared sauna, energy treatments, IV treatments, protocols for IV antibiotic treatment, a detox program, clean food, and emotional support. Part of healing from these infections is dealing with any traumas and hurts that are impeding recovery. The mental, psychological, emotional and spiritual aspects need addressing and this will be a part of the program. I plan to have an endowment so those who have depleted their resources can still come and experience healing. The best of all worlds of medicine will be incorporated into the program.
Inanna House will have MD supervision. There will be treatment rooms, a clinic, and room for conferences and classes. I hope to be able to offer residencies for health care professionals so we can increase the number of Lyme literate providers. I hope to use the clinical data we collect to further prove to the nonbelievers that we aren’t crazy and these infections do indeed exist in epidemic proportions. And to offer a place where we can create inpatient treatment guidelines that serve the Lyme population.
Currently, we are treating Amanda at home. We give her IV hydration everyday, and include amino acids and minerals, and Phosphytidal Choline which helps to bind the die-off and toxins and clean cellular debris, helping the liver to function better. I wanted to give her IV Vitamin C and B but it made her vomit so I had to stop for now. We are giving her meds around the clock every 4 hours. Her pain with the Herxing is incredible but after 14 doses of Gentamycin for Bartonella her eyes are more clear, her brain is more sharp, and her nausea is better. She is encouraged that we are moving forward. We are doing this at home as the hospital won’t do it because they don’t believe she has an infection and they fear the liability. Shameful!
This must change. It is my wish that this will shine more light on this issue and change how the current system views these infections.
Thank you, Mara
Mara Williams, ANP
I’m very excited to announce a new series here on Lyme Chick! I’m starting What to Expect videos, 2x monthly.
The videos will hopefully provide helpful, and informative insight into questions you, the readers would like to explore, and topics you’d like me to cover.
My hope is that I can offer comfort and shed light on any seemingly daunting experiences I’ve gone through and also address whatever is on your mind!
For video suggestions please email: email@example.com
You can suggest video ideas on the Lyme Chick Facebook Page
So, here is the first What to Expect video! Focusing on what to expect before, during, and after PICC Line Insertion.
WHAT TO EXPECT: PICC Line Insertion