Each day right now feels somewhat surreal – on January 26th, I will be having 2 procedures done. One will be the bleomycin injections in my rectal area with an interventional radiologist who has studied under Dr. Alomari. The other procedure will be an ankle/foot debulking with Dr. Spencer. While I have had several chilling medical situations in the past, I am particularly anxious for the debulking part of the day... however I am in such a momentous amount of pain that a part of me is really just ready to get this whole ordeal over with!
A great deal of people ask me “how I do it.” The truth is, I do not do any of this alone. I have an amazing team of people surrounding me that play a huge role in helping to keep me centered. I see a talk therapist (who is utterly amazing) approximately 3 times a week. I have a nurse practitioner at the same office who prescribes me antidepressants and helps to keep my OCD in check (at least, compared to how my OCD used to be). I have parents, and not just parents, but incredibly great ones who cater to me physically and emotionally. I have an amazing team at Children's Hospital Boston. I have family members who are supportive and loving and infiltrate my veins with strength. Last, but certainly not least, I have friends and a slew of vacular anomaly/Klippel friends who breathe life into me day-in day-out. I really am not doing any of this alone, and for that I am very much so grateful...
|Mom and I the other day on a rare outing for me these days - we took my walker.|
It has taken me quite some time to let go of toxic people in my life (yes, that has unfortunately included some of my own flesh and blood and people I have been friends with for several years) in order to reach a calmer state. I despise confrontation, so often I would just let people walk all over me despite my feelings continuously getting hurt. My therapist, however, taught me that there is no room for this kind of energy in life – especially for someone dealing with a chronic illness as grave as mine.
So, I know this post is rather short and I have not written much as of lately, but I wanted to say thank you. Thank you for all of the people out there who have been such an amazing support system to me. And, while I do not consider myself to be in a position to give advice, I will share this suggestion: surround yourself with a good team. Surround yourself with people who are competent and kind, and truly have your best interests at heart and want to see you prevail.
That's all for now,
I will type more soon!
Sending you lots of love,