I haven't posted in
a very long time but it's time to get writing again! A lot has happened in the
past year as far as my FAVA journey goes and I'm excited to start writing
again. I've been in school and have had a very functional last 6 months as far
as pain management goes. I've been mainly using my diet as my primary source of
pain management which has been extremely effective except for the last few
weeks. I'm learning that with high stress levels in school, I need to practice
more self care and go back to some of my older pain relief strategies. The good
news is that I have a few blog posts almost ready to go (including pain relief
strategies) so those will be posted soon!
I'm currently
experiencing a flare-up which has taken a toll on me physically and
emotionally. It's been a while since I've struggled so much having this illness
and I find it important to recognize that it's ok to not be okay sometimes.
Having a chronic illness can be emotionally taxing on you and whoever is
involved and it's okay to take a day off just to practice some self care
however that is needed. For me that involved taking a few days off from school
(very inconvenient since it is mid-semester and have lots of things to do) but
it's proved beneficial so far at least.
Normally my
flare-ups involve excessive swelling and some bruising/discoloring which
inhibit my walking and include throbbing, pulsing pain and some nerve pain. This recent flare up lasted
for more than 2 weeks which was extremely abnormal so I spent the day at Boston
Children's with two of my surgeons who have operated on me in the past to find
out what was going on. We did an ultrasound that showed that my FAVA hasn't
changed much for the past 8 months which was good news in a way but upsetting
because we didn't know what caused the flare-up! I had always had pain in two specific areas
in my butt/thigh so had always imagined that those were the only two FAVA spots
left since I had the gluteus maximus muscle removed from my amazing surgeon Dr.
Spencer, however I never realized that the disease is more complicated than
that. The ultrasound showed the FAVA was infiltrated throughout the majority of
my tissues in that area and that those two specific masses were extremely
inflamed to the point where it showed up like a black hole on the ultrasound.
So even if we tried to resect those two masses which might not be worth it due
to the recovery, scar tissue, and how difficult they were to find in the past,
I'm still essentially full of FAVA in that area.
So here comes the
plan. I'm scheduled to meet with Dr. Trenor at Boston Children's in a few weeks
to discuss the possibility of starting sirolimus which is slightly terrifying
yet I'm excited. My previous surgeons said that they could try to do the procedures
again that didn't work for me but I'm not willing to go through that again. So
sirolimus is essentially the only treatment left and wouldn't be started until
February if I'm eligible. So until February, since conventional medicine hasn't
been effective, I will be relying on alternative medicine to deal with the pain
so I can be functional. Medical acupuncture, lots of supplements, essential
oils, yoga, meditation, a dietitian, and possibly even aromatherapy is on the
list so far! Also, stress management is of number one utmost importance so I
will be taking incompletes in some of my courses to reduce my academic course
load and focusing on my health right now to bring this flare-up down! Multiple
studies prove that stress and pain are heavily connected and this is what we
believe had caused the flare-up so I know I need to make a major lifestyle
change. Talk about a lot of work!
Hopefully I'm
eligible for the sirolimus because I can't express the need for more treatment
options for this illness. I know I'm not the only one effected because I've met
and talked to so many others who suffer but we need treatment options! So this
holiday season, instead of buying pointless gifts for others, please consider
purchasing something like a candle or T-shirt from the FAVA foundation where
some proceeds go towards the foundation for providing help to those who suffer
with FAVA.
http://www.thefavafoundation.com/donate.html
https://www.facebook.com/thefavafoundation/?fref=ts
Some good news is
that I'm fortunate enough to be doing my own independent research at the
University of New Hampshire about the correlation between mindfulness
techniques and chronic pain in young adults while co-facilitating a chronic
illness support group on campus that I'm extremely passionate about. Also, my
boyfriend and I are taking a vacation to Europe in December and January
together while we have the chance before I (hopefully) start the sirolimus!
Felt like I needed
to end on a hopeful note,
Best wishes
#favahugs
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