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.
Carla's Corner
Free to be Me... FLY
Thursday, May 28, 2015
One woman's journey with Lyme
Saturday, January 24, 2015
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.
Friday, January 2, 2015
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
Tuesday, December 30, 2014
To thine own self be true
* all material is original and can be reposted with permission*
The facade we put out into the world is just that, a facade. true growth occurs when we are willing to let people see the true being that is ourself. this is the very essence of "to thine own self be true..."
For many years in recovery, I did not really know what that quote meant... "to thine own self be true" After all, I did a moral inventory, I had gone to counseling, I wrote my inventory each night, what else was there for me to do??! For me, I had to be true in my personal relationships. I had to be true in what I was willing to accept from others. I had to be true in knowing that I deserve better than emotionally abusive relationships.
It took me years into sobriety to realize that I was being abused by someone. Being true to myself means that I am worth more than that abuse today. I can detach with love. I can be safe. I can go on from here and help others who have been in the same situation as I. I can break the silence when it will be helpful. To myself and others be true. Love and light.
DBear
Sunday, December 28, 2014
2014 recap and gratitude
2014 nearly killed me. I thought 2013 was tough with the job loss and the move, but at least I spent that entire year living in the most sought after housing market in the US and traveling the country.
Contrarily, I spent 2014 taking care of my ailing grandmother (alzheimers), losing two jobs due to health problems, grieving the other grandmother and my grandfather, along with a few uncles and three really good friends, then two best friends who didn't die, but rather chose to leave my life. Not to mention the medical problems that turned my world upside down. And the loneliness. Sometimes, all my body allows me to do is stay on the couch and that gets lonely. Very lonely. I'm not sure I even traveled this year, that would be the first in my life since about 2006.
However, there have been some major blessings for 2014. Anyone has followed any of my blogs know that I have to end with gratitude, just as I have to begin with gratitude. So here goes...
1. I was able to forgive myself for past actions that came up when I moved back here. It's finally happened.
2. I had the opportunity to be of service to my grandmother, to a friend who had a new baby this year and her 3 other kids, and to many others. One of those jobs gave you the ability to help a teenage girl get out of a very abusive living situation and now she is doing great!
3. Joining St. John's officially, being confirmed in the Episcopal church, and of course joining the choir. I'm a much better singer than I was when I moved back, and a much better person at that. I've come to peace with the church and have built some beautiful friendships with Susan Gage and Mother Phoebe! (Interestingly, neither are primarily at SJ as they were before I moved away in 2009)
4. Reconnection with friends and family, building new friendships within the church and the LGBT community, sponsorship. My first show at Mickee Faust! Hopefully, I will have time to join Faust this coming year, but if not, I'll be going to their shows! And heu, I was on the front page of my hometown newspaper wearing a rainbow flag. it doesn't get much cooler than that!
5. Reiki practice and becoming a practitioner. I also had an incredible experience of healing and forgiveness towards another during my first Reiki workshop. That cannot be undone. I'm also building a beautiful friendship with my Reiki master, Susie, and I hope that we can nurture this friendship for years to come.
6. Finally making the year commitment to dialectical behavioral skills- learning more about mindfulness, interpersonal effectiveness, emotional regulation, and impulsiveness. Very excited about this new venture, regardless of the heartache that brought me to the willingness to do it!
7. A fabulous new team of doctors. If I have to have medical problems, I may as well have a kickass team of doctors.
8. A great (and affordable) personal trainer who works with me on my nutrition and simply makes living a healthier lifestyle easier for me :) the added benefit of working out with my bestie Margit, and our trips to Trader Joe's after :)
9. Reconnected with my dad. And my father. They are different. But I've come to a place in my life where I have a great relationship with bio dad, and Bear as always, along with a good place with my step dad. I was not sure that would ever happen. It's a great place to be. I also get to work with Bear every single day as we do distance Reiki. Look forward to continue this for many years to come.
10. Of course I'm grateful for my beautiful home. It can be very difficult living in the house I was raised in, considering a lot of the things that went on in this household during my younger years and my teenage years. A lot of trauma. However, I have the honor to continue to live here and the blessing of saving money while doing so. Its a 3 bedroom house with 2 living rooms a screened in porch a full backyard and 2 bathrooms and I'm paying less than I would be paying for a single apartment. You really can't beat that. I also get to have free reign on how I decorate the place it's becoming my sanctuary. Thank you to my mom for trusting me with her house. Now to hosting more friends and gatherings here In the new year, starting with our Vision Board party Jan 6!
11. I joined a life course group of sorts back in June and have made some lifelong friendships. Although we have all been busy, I know that I can call on a few of these girls when life gets tough and they are always offering to help. I can count on one of them to go out for a nature walk or a kayaking trip and it's like we have been friends forever (looking at you, Rojas!). And I reconnected with Leffler who I beat up on the playground in 4th grade (she tells the story differently) and we are becoming great friends too (hahaha love you kelly!)
12. I started working on art more- from getting back into photography to collages and mandalas, it's all calming for my soul, and I hope to continue this in the new year.
These are the top 12 for me. I hope that you will join me in posting some of your gratitude below (no acct needed, just sign your name so I know who you are) If you want to join in on our vision board party, any outings or any of our growing activities, please let me know. We would love to have you. the goal for this next year is to have something happening at least once a month.
Love and light, see you in 2015
D bear
Sunday, December 21, 2014
Happy Winter Solstice 2014!
Monday, December 15, 2014
When is it time to say goodbye?
One that has filled my soul and spirit to the brim, but has also brought me such heartache and toxicity that has become dangerous for my wellbeing. It's no secret that I have struggled with suicidal tendencies in the past. So when a relationship can bring me to that point- to wanting to kill myself at the thought of the relationship being over - is that when it's time to say goodbye?
But what about the incredible times? What about the beautiful moments of healing and complete intimacy. Unconditional love. Then again, if it was unconditional love, it wouldn't be emotionally abusive. The other person wouldn't just shut me out when it's convenient for them. They would want to stay, to grow, to love, to talk. Maybe that's when it's time to let go... when the other person decides I am no longer worthy of their love. Their friendship. Their compassion.
The problem is, I still love this person more than words can express, the emptiness I feel without them-- it's like I can't catch my breath. The greatest panic attack meets the all consuming grief. I love her more than I've even loved past partners. (This isn't a romantic relationship, it's a soul's kinship)... We have this pull to one another I've never felt before... a magnetic energy. Yet it's interrupted by toxicity. I just want the toxicity to end, I want to begin again, I want to go back to my friend...
Friday, December 5, 2014
I am a strong, beautiful, amazing woman...
Sunday, November 16, 2014
Human being vs human doing...
Friday, November 7, 2014
What a year
Every pressurized system needs a relief valve. There has to be a way to reduce the stress, the tension, before it becomes too much to bare. There has to be a way to find relief because if the pressure doesn't find a way out, it will make one. It will explode... It never ever lets up. It just builds and builds and builds.
Saturday, November 1, 2014
Where is my Grandma?
Wednesday, October 15, 2014
All things work together good to those who Love the Lord
Wednesday, August 20, 2014
Thank you
Monday, July 21, 2014
Alison
Sunday, May 18, 2014
Gone too soon...
Monday, April 14, 2014
Praise you in the storm...
Monday, April 7, 2014
What happens when you go near the scary house around the corner...
Tuesday, March 25, 2014
A rolling stone gathers no moss...
Friday, February 28, 2014
My sanddollar story of the day
Saturday, February 15, 2014
Why I will never move cross country again...
Monday, February 3, 2014
The kind words of a stranger...
Friday, January 17, 2014
Didn't someone used to live here?
Saturday, January 11, 2014
What day is today?
Friday, January 10, 2014
Are you my granddaughter?
Tuesday, January 7, 2014
Woosah
Thursday, December 26, 2013
Back in tally week 1
Friday, December 13, 2013
Cross Country 2.0... day 2?
The main differences this year than 19 months ago are above (riding solo) and that I am taking a different route. I am also not driving the big 16 footer with my car towing behind on the flat bed, thank God! And I am not chain smoking, or smoking at all for that matter. I'm also not downing a million slim jims resulting in tons of swelling from the sodium. Nor am I fighting with the step dad. I guess the entire journey is a lot different than last time! China is still being chill about the whole thing.
Today was basically a success. I saw Joshua Tree Nat'l Park.... (For pics, see my FB or Instagram: name is sfbutterfly on there) it was beautiful, but did make me want to go climbing. Thank goodness I listen to my body today. I didn't make the best timing because of this detour but it was worth it. I also saw two shooting stars over New Mexico, only the second time in my life that I have seen back to back shooting stars... the first time was right before I moved from Tampa. Grateful.
The not so pleasant parts of today were the driving part ha. Also, I am now on the book on tape kick (because I'm my mother, apparently?) and my freaking CD player stopped working half way through my second book! It won't spit out or accept discs... I will chalk this up to Friday the 13th and hope it works tomorrow.
Oh, and I am grateful to be alive. There was a huge tire in the road today and had I not been paying attention, I would be seriously injured or dead tonight. I was able to slam on brakes (spilling a gallon of water...) and then get over to safety. China was a bit shaken but we are all good.
I am now in El Paso determining where to go tomorrow. I was going to go to San Antonio then Austin, then up to Oxford to see Jess.... however, my friend that was meeting me in Austin may have to bail so I could be going to Dallas Fort Worth, then Little Rock, then Jess. I've never been to DFW or Little Rock (unless you count airports in Dallas), so I am cool with either option!
For now, I say Good night :)
Love and Light
DBear
Wednesday, December 11, 2013
Before I leave Oakland....
Tuesday, December 10, 2013
Cross country Road tripping 2.0 entry 1
Wednesday, December 4, 2013
An honest appraisal
Tuesday, December 3, 2013
Moving....
Saturday, November 30, 2013
A different kind of Thanksgiving
Friday, November 22, 2013
Who says you can't go home?
Oh the places you'll go....
1. Vancouver, WA
2. Portland, OR
3. Eugene, OR
4. Crescent City, CA
5. Redwood Nat'l Park
6. Eureka, CA
7. North Bay (Includes Sonoma, Marin, Sausalito, etc.)
8. San Francisco, CA
9. East Bay (Includes Oakland, Berkeley, and all of the burbs)
10. South Bay (Palo Alto... where Stanford is)
11. Sacramento, CA
12. Reno, NV
13. Pyramid Lake, CA
14. Los Angeles, CA
15. Hollywood, CA
16. Long Beach, CA
17. Beverly Hills, CA
18. San Diego, CA
19. Palm Springs, CA
20. Sedona, AZ
21. Grand Canyon Nat'l Park
22. Sequoia Nat'l Park
23. New Mexico (passing through on road trip)
24. Oklahoma (passing through on road trip)
25. Houston, TX
26. San Antonio, TX
27. Arkansas (passing through... want to go back to Ozarks and Little Rock)
28. New Orleans, LA
29. Oxford, MS
30. Memphis, TN
31. Nashville, TN
32. Johnson City, TN
33. Knoxville, TN
34. Hendersonville, NC
35. Smoky Mountains
36. Rocky Mountains (almost forgot CO)
37. Denver, CO
38. Aurora, CO
39. Fort something, CO (For a state convention)
40. Estes Park, CO
41. Washington DC
42. Baltimore, MD
43. Arlington, VA
44. Pittsburgh, PA
45. Philadelphia, PA
46. Boston, MA
47. Atlanta, GA
48. Augusta, GA
49. Does Macon, GA count?
50. Albany, GA
51. Every little town in Georgia
52. Tallahassee, FL (lived there)
53. Jacksonville, FL
54. Pensacola, FL (lived there)
55. Tampa, FL (lived there)
56. Nearly every beach in Florida
57. Miami, FL
58. Orlando, FL
59. Every small town in Florida
60. Hilton Head Island, SC
61. Savannah, GA
62. St. Simon's Island, GA
63. St. Louis, MO (I had to stop and think what state STL is in.. wow)
64. On Monday, I can add Yosemite to this list.
65. Most of lower Alabama
I am quite certain I am leaving things off, but I wanted to document what I can so far. Especially considering I am about to do another cross country trip. I have one of three routes planned, depending on snow. My preference is to go up to STL (Going through Utah, Nebraska, etc.) then down to Tallahassee (stopping in Mississippi to see the Spons) but weather must cooperate... I have never driven in snow...
Feel free to add to this list if you know me and remember more than I do at the moment.
OH, and missing from this list is NYC and the Falls (my mother and I have been planning that since I was 15.... still waiting..)
Love and Light
Dbear
Sunday, November 10, 2013
No place like home...
Tuesday, October 29, 2013
Let's celebrate the things we like about ourselves!
So I see so many girls posting the photo below asking other people what they like about them. I have a better idea! Why don't we post things WE like about each of these? I'll start
1. Eyes- I like the way my eyes sparkle and have little freckles in them
2. Smile- I like that my smile is so big with a cute little crooked aspect to it
3. Face- I like the youthfulness of my face, and no acne is a plus
4. Body- I like that my body can do healthy things like hiking, swimming, walking, and biking
5. Words- I like that I can use my words to express myself, in a beautiful way
6. Personality- I like my wit
7. Attitude- I like that I find gratitude and the upside of everything
8. Jokes- I like that I can laugh at myself
9. Everything- I like me?
10. Something else- I like my resiliency
Thursday, October 24, 2013
I could be that guy
Thursday, October 17, 2013
Reiki + Bear = The best thing since sliced bread!
Many of you know I have an adopted dad named Bear. He and I have been writing hand-written letters to one another since I moved from home in 2010. This, I find healing in itself and I am sure the post office is grateful for our communications. However, our relationship has gone much deeper over the last couple of years. Bear began learning Reiki at the ripe old, but young at heart, age of 70+
and has now moved in to distance Reiki.
Reiki (to me) is an exchange of energy, a spiritual healing that takes place within this exchange. Some may liken it to the laying of hands they do in the Bible belt, but I find it to be in it's own category because it does not require any belief but a mere willingness to be open and be connected, a willingness to be still and receive. It is open to all faiths, colors, shapes, sexual orientations, etc. Yes, it helps to be connected to a higher source of strength in order to receive the Reiki. I find that when I am on a more even keel, I am better able to receive. And receipt of this Reiki puts me on such an even keel. So back to Bear, he went through extensive training and continues to do so. His energy seems to strengthen the more he does this work, and he has taken on four clients a day now. The cool thing about Bear is he does this by donation or barter system, he has yet to ask for a dime. I am his daughter, so I get top treatment... and I was his guinea bear :)
I had experienced one healing in 2009 by another Reiki practitioner, Vivian (Ladybug)... she did a session on me before I was set to have knee surgery. I went in for the surgery and the doctor said the bone they were set to remove was no longer floating around, it had miraculously fixed itself.
Fast forward to today... Anyone who knows me personally knows my struggles. From depression and anxiety, to substance abuse and an eating disorder, dealing with any huge life change is a task. However, my mental psyche has been cool and calm through this entire lay-off ordeal. Which is saying a LOT. Even through all of the injuries, I haven't freaked out and taken it out on my body by restricting... Which leads me to my knee...
Bear has been working tirelessly on my right knee. Mom's friends (mine too) have prayed about it.. I lost my insurance so I am now completely at the mercy of miracles and natural healing. Back in June, I had 3 back to back injuries on my knees. I was put on steroids. Between that and eating crap, I gained a LOT of weight, which put more stress on my knee. Up until today, even swimming hurt, unless I just swam with my arms. Sunday, my knee slipped out and I had to put it back in. Today, I woke up pain free (this never happens), and was even able to bike. I chose bike because I had been avoiding it forever and that still, small voice said to try. So I did. Today, I did a mini biathlon with no pain, no ibuprofen, just me, water, and exercise. My knee hasn't swollen, I do not have knives sticking in it, no pins, tingling, nothing. Miracles, I tell ya, miracles.
I could go on and on about this... even the mystery spot in my stomach was cured... the one doctors couldn't figure out to save their life. I'm also still a non-smoker (almost 10 months), and am willingly making healthier food choices. It will take a while to get completely back on track with my physical health, but I have the best practitioner there is. And he sends me distance Reiki every morning! Thank you, Bear, I woof thee!!!
P.S. I HIGHLY recommend you try Bear Reiki for ANY problem you may have. If you're in Tallahassee, he either comes to you or you go to him. If you're at a distance, no problem! Contact me for a way to reach him. Yes, we need to set up a website for him... I will await his approval to do so :)
Love and Light,
DBear
Wednesday, October 16, 2013
The single 29 year old- Pros and Cons
Thursday, October 10, 2013
Cha cha real smooth...
Now it’s time to get funky
To the right now, to the left
Take it back now ya’ll
1 hop this time, 1 hop this time
Right foot 2 stomps, left foot 2 stomps
Slide to the left, slide to the right
Criscross, criscross
Cha Cha real smooth
Let’s go to work
To the left, take it back now ya’ll
2 hops this time, 2 hops this time
Right foot 2 stomps, left foot 2 stomps
Hands on your knees, hands on your knees
Get funky with it, aahhhhhhhhhh yaaaa
Come on, Cha Cha now ya’ll
Turn it down, to the left
Take it back now ya’ll
5 hops this time
Right foot let’s stomp, left foot let’s stomp
Right foot again, left foot again
Right foot let’s stomp, left foot let’s stomp
Freeze, Everybody Clap yo hands
Come on ya’ll, check it out
How low can you go?
Can you go down low?
All the way to da floor?
How low can you go?
Can you bring it to the top?
Like it never never stop?
Can you bring it to the top?
1 hop, right foot now
Left foot now ya’ll
Cha Cha real smooth