One woman's journey with Lyme

A little bit of background on me: I've always been an extrovert. An athlete. A wild spirit, free to roam. Outdoorsy type, rock climbing in Colorado, hiking in the Carolinas, California, trekking all over the woods in Florida. That was my life.
That is still my life on the "good days." Yes, now I am one of those people that have good days and bad days.
I have Lyme disease.
I cannot be certain when exactly I contracted Lyme. Symptoms started when I lived in Tampa (2010-2012).
I never had the rash. I do remember what we thought were "flare ups of mono," then "stress from grad school." I was even tested for MS. I'd get weird neuropathy and they chalked it up to neck and back injuries from a car accident of 2007...
Fast forward to the last 12 months... memory fog, trouble finding my words, intense pain, sometimes a burning pain in my legs, sometimes arthritic... and the fatigue. My God, the fatigue.
There were mentions of Chronic Fatigue, sort of arthritis, autoimmune diseases, maybe complications from my endometriosis. Lupus, leukemia, then the third "L"... they finally tested me for Lyme. It came back positive.
I have Lyme Disease.
I've told a handful of people and most reactions are "oh my God, you have Lyme??" like its a death sentence, and there are the few eye rolls, shrugging it off like it's nothing, or worse- those who say nothing at all. Who make you feel completely invalidated as a human being.
Most of my downtime this year and last has consisted of naps or resting. Some days, I will crash for 48 hours. I haven't been able to hold a fulltime job since September of 2013.
I was just diagnosed. It is almost June of 2015.
I begin treatment July 1. I've gone through every symptom and feel this relief that I have an answer, yet regret that I didn't think to get tested sooner. Not to mention fear of the stigma that comes with this diagnosis.
We already know I am late stage. The emotional, neurological, and physical symptoms have all set in. How well I will respond to treatment is to be determined.
I do know I am continuing with life as close to usual as possible. I go to the gym early mornings on the days that my legs arent on fire or numb or arthritic. I work.
I am looking to relocate, specifically to a bigger city with more specialists. And I'm holding on to friendships where I can, but sad to say there aren't many left. I do tons of behavioral therapy to help with the emotions and interpersonal interactions.
I've Been told I "jack people around" schedule wise, I "flake out," I'm "unreliable," when I really just want to scream "I AM SICK. EITHER BE SUPPORTIVE OR STAY AWAY. PERIOD"
Your choice.

the 5 worst things to say to a woman with Endometriosis

My friends know I was recently diagnosed with interstitial cystitis and endometriosis. Endometriosis can only be diagnosed via laproscopic procedure.
What is it? To put it simply, it is the growing of the uterus in places that is not supposed to grow. It is the most painful disease I have to experience yet.

What is worse if some of the things people have said to me. Here is a list of the top 5 things you never want to say to a woman with endometriosis.

1. "Oh, my friend (sister, aunt, cousin, etc) had that and she had surgery and is a okay." I am glad for that person. However, the only cure for endometriosis is true excision surgery and that is not possible in all cases. Hysto will work if the endometriosis has only affected certain areas and the woman has no desire to have children. Laps work for a short time. Same with ablation.

2. "Oh isn't that like a painful period?"
Girl. I wish that is all it is. I have adhesions from my gallbladder all the way down to my bladder. This causes inflammation and pain all month. Yes, it is much worse around "that time" of the month, to the point where I cannot get out of bed and I'm puking from the pain. But to assume it is simple PMS is quite frankly ignorant. Every woman is different. Some women have it with very little pain. They're the lucky ones.

3. "Why don't you just have a hysterectomy and adopt?" First of all, that won't cure the endo on other organs. Second of all, it's my God given ability to attempt to carry a child into this world when the timing is right. Lastly, would you want surgical menopause at age 30? No? Me either.

4. "I heard you can take a shot and that will stop your period so you won't have pain"
Again, many treatment options, no cure. A lot of these treatments have horrendous side effects.

5. "Don't you just have a lower pain tolerance than the rest of the women in the world?"
Don't you just want to shut up and go educate yourself so you can quit sounding so stupid???

Ok number 5 was a bit drastic but this is where I'm coming from as a newly diagnosed sufferer of endometriosis. I was on birth control at age 14 for painful and heavy periods, Depo at age 18, and then went through a slew of diagnoses before we figured out what this beast is. It's still uncertain if i have true IC and PCOS or if it's all endometriosis.
I do plan on seeing an excision specialist within the next year but I have a personal plan first. Feel free to inquire if you are a sufferer like I am or join a group on Facebook called "Nancy's Nook for endometriosis" these women have become a lifeline during a very confusing and scary time.

Thank you for reading.

New Year's Solutions...

It appears that last year I forgot to write my new year's resolutions for 2014. Likely because I had just moved back to Tallahassee. This year, I am starting off the new year working on my health first and foremost. Not the typical resolution like oh I want to lose 5 or 10 pounds, but finding solutions that work for me without relying on Western medicine. This includes making about 50% of my meals and not relying on prepared foods. (It would be unrealistic to say 100%, I have to build up to that) This also includes continuing daily Reiki even if its only for 5 to 10 minutes a day. I would love for my chronic conditions to be gone by 2016... or at least minimized.
The next solution is ridding myself of toxic relationships, finally. One in particular, that I have gone back and forth to for years. Until this person can prove to me that they are no longer toxic in my life, I will just have to love them from a distance. I can love someone without being best friends with them. We can make small talk without spending hours on the phone or talking daily. We can run in the same circles without being connected at the hip.
The upside of the solution is I can add healthy relationships. Starting with my circle of friends that will be at my vision board party this coming Wednesday night. These are healthy, honest, decent friends. Actually, they are a damn good group of young women and I am honored to host them in my home. Hopefully, I can commit to weekly walks with my spiritual sponsor, Susan.
My next solution will be to continue to keep my side of the street clean and live in gratitude. Yes, 2014 was really hell, literally a living hell. But I could easily have made it a little better by finding more gratitude in the situations. I also owe some amends and will be working on those with my trusted friends.
Lastly, keeping my commitments. This includes choir (especially signing out of rehearsals when I will not be there instead of just not showing up.) Continuing my DBT class. And continuing my gym commitment to myself, my trainer, and my workout buddies. I will actually have two gym memberships and am very excited about this. Thank you to one person who is providing my continued time at golds.
I think these are all realistic and achievable goals and solutions for the New Year. I also have other projects I will be working on but I'm not ready to discuss. I would love to hear your goals for the New Year please comment below or send me a message. As always love and light
DBear