It has been some time since I've last updated and much has changed since then, so I'll just start there.
At the end of the summer my lupus got to a new level of difficult. Back to back steroid treatments, steroid shots, maxxing out on numerous NSAIDS and I still was in excruciating chronic pain and fatigue. My doctor recommended I start the next level of medications. For the most part once one progresses to this next treatment level there is no going backwards again. Some can find long term remission or medication managed lupus, but I have yet to go more then 6 months without needing to adjust treatment because of progression.
I was just not ready to go there yet, especially since there is a risk with these immunosuppressants for developing cancer, a door I just cannot easily open, especially since my mom did develop Non-Hodgkins Lymphoma as a result of her autoimmune disorders.
So, I requested and was granted a 3 month medical leave of absence from work to allow myself to attempt to recover from the past 5 years of stress and seek some alternative "Hail Mary" treatments and appointments as a last ditch effort before infusion treatments.
I started weekly acupuncture and a supplement called Mannatech my mom has been trying to get me on for years. I was referred to a Neurologist, a Pulmenologist, a Dermatologist and seemingly all the other "ologist's" to get fresh eyes on my health. Thankfully all checked out well and the Lupus has done no permanent damage, and my grab-bag of symptoms were solely flare related.
About 9 weeks into my leave of absence I started feeling relief and by the end of my 3 months I actually felt the best I've felt in years.
I spent a lot of time reflecting on the situation and what the next steps were and I came to the difficult realization that at this time, I just can not work full time and have lupus and be an active parent to a toddler. Something had to change, and lupus and motherhood were not exactly negotiable.
So I considered resigning from job. A choice that when laid out logically makes no sense whatsoever. My position allowed me to work from home and had been incredibly supportive of the challenges I had faced in the past 5 years. I had health insurance for Aria and I and relative job security as I was recently given an amazing opportunity to create and direct a new department.
But God. He had a different plan for me.
When there is great risk and uncertainty in a choice and yet I have complete peace about the decision I am about to make - that's when I know I am following His direction for me.
And so I resigned from my job.
Something I never have done without having another job lined up.
And so starts the next chapter of my life. I do not know what direction it will take me, just that I'm following it one day at a time. So far God has made things just fall in place where they are needed. My amazing boyfriend Karl has made it possible for me to take this leap of faith, I've been able to trade some child care with a friend so that we both have some kid-free time, and I've had the ability to really step into my role on the HeartLight Board of Directors and help in the preparations for our annual Gala and invest more time into the group of Young Widow(er)s that I facilitate. I have even been able to take on a little interior design work on the side and after trying (and LOVING) a couple products - just became a consultant for Rodan + Fields.
I am grateful that in this moment I turn the pages of this new adventure with hope and anticipation, something I really didn't think would be possible again in life after loss.