Hello Beautiful People,

I wanted to reach out and say hello to all of you, especially those I haven’t had a chance to connect with since we left the process.  I really miss each and every one of your faces, but hearing many of your voices on our recent call was magical.  (Not hearing a few of your voices was a downer.)

I’ve been lurking on Marco Polo and have really enjoyed all of the video updates from those who have posted.  I find it awkward to post videos of myself so I also signed up for Slack today; thank you Thomas!   I’ve always wanted a reason to use Slack!

I also wanted to thank everyone for emailing photos from our week at Hoffman and give a shout out to those who have sent Spotify playlists.  I’ve been jamming to your music during my many drives back and forth to the various doctors I’m currently seeing, which leads me to update you on my status since we’ve returned to life outside of the sanctity of the horseshoe.

As you all are well aware, I was really fighting my dark side during Hoffman and have struggled with depression for most of my life.  I’ve been very resistant to the slew of anti-depressants that have been prescribed to me over the years, and had decided last August to stop using the one I had been on for the past 5+ years.  I realized during the Process that I unfortunately needed to get back on them; that I can’t keep trying to fight this without chemical help.   On Monday I began a "mood stabilizer” that will take around 6 weeks to see if it works or not.  (I welcome hearing any of your experiences, successes or failures in this realm as I spend a lot time collecting data and researching this topic.)

On top of the low mental state that comes with depression, for the past 6+ months I have been dealing with chronic pain attacks in my hands and feet that also radiates up my arms and legs, and sometimes my lower back, neck, and shoulders. (I’ve talked to a few of you about this but if/when you saw me hunched over during HP, this is why…  I was in terrible pain.  Aggressive “bashing" also didn’t help, although it was amazing for me as a mental and physical release.)

After seeing six different doctors during this time, none of which could figure out what was going on, I finally came across a disorder online that matched my symptoms; it is called "Small Fiber Neuropathy.” Two days before leaving for Hoffman, I had what’s called a "Skin Punch Biopsy” done on three areas of my body.  Last week, I got the results back from this test and I had correctly diagnosed myself, which was both very bittersweet and validating.  I have tested positive for Small Fiber Neuropathy (SFN), which is irreversible and incurable, but a small step forward in the sense of at least having a name for my symptoms outside of Fibromyalgia, which I’d previously been labeled with.

After getting these results, my doctor had me do a bunch of obscure bloodwork to try to figure out the cause of SFN and which will then determine the treatment plan.  So far, my bloodwork has not come back with anything that has indicated why this has occurred and my case is considered “idiopathic,” meaning they do not know the cause.  I’m pushing for a few more tests, but am feeling really deflated due to the daily pain and depression and not knowing when or if it will subside.  All of this is such a slow process and it is really testing me.  One of my patterns is impatience and I despise all the slow baby steps I have to take in terms waiting for appointments, taking tests, waiting for results, drug trials, maybe getting answers/maybe not, dealing with insurance, advocating for myself, etc.  It is also very expensive to be sick.

My vicious circles are in full effect right now, blasting me with worry and a spiraling, sinking, hopeless feeling.  I never imagined this would be my life at 42 years old.  As I deal with the depression and pain, I’m not working.  In fact, I’m closing the company that I’ve worked so hard to build over the past 6+ years.  This is incredibly painful in itself, and I feel like an utter failure; make that an utter failure with no income who had to move in with her mom in December. Until my health improves, I feel trapped…  I don’t know my body will feel from day to day, which makes going back to work very hard.  If I don’t get back to work, I’m not able to have the financial independence I’m accustomed to.

Additionally, the day I returned to Colorado from Hoffman, my female bulldog, Kewpie, injured herself.  We were hoping with some rest she would feel better, but we got some additional x-rays done this week and got bad news.  Like Corinna, she has torn her left ACL (CCL for a dog), has a bad right CCL, and has double hip dysplasia.  She will undergo surgery next week for her left CCL and will have 8 weeks of recovery ahead of her.

I hate bringing all of my struggles to the table, but I’m working on being vulnerable and letting my authentic self be seen.  Unfortunately this is what I’m dealing with right now and I wanted to uncharacteristically share because I don’t want you, as individuals that I have come to care so much about, to think I’m not letting you in, not thinking about you, not participating, not caring, not acknowledging you, etc.  I don’t want to bring anyone down or add a negative, dark cast to any of the positive light each of you are feeling in your own lives.  I often keep a distance from people because I can’t pretend I’m okay, hate being fake (yet hate sharing my reality), and it makes me increasingly sad to share how few improvements there are from day to day.  I’m working on radical acceptance of my situation but in the meantime I’m extremely appreciative and grateful for the support I do have.  The conversations I have had with some of you, along with your emails, texts, and MP's are very up-lifting.  I feel less alone as each of you share your ups and downs.  All of us struggle and we have all been dealt different sets of cards.  In fact, I’m in awe of some of your vulnerability and what you've shared with our group.  It has inspired me to type this extensively long, too-much-information email to you.  I hope there will be day, cruising down the “right road,” when it is clear to me why all of this has happened.  In the meantime, I’m in a gray zone, but I’m truly grateful for each of you, and just want you to know this: I love you and see you.

Wizard Winks,
Kacey