This photo was taken late in the summer of 2020 when i had a little reprieve from being sick. The truth is I was starting to have recurring symptoms and had to cut the day short. Thankfully around then I had a few weeks of feeling somewhat normal in my body i was able to take a a couple trips to the ocean.
Back in late July after a bad flare of my UC (auto immune) I lost about 15/20 pounds quickly and after being on a feeding tube....my muscles nearly disappeared.
I envied my 88 and 90 year old grandmothers who seems to walk up the stairs with more zest for life than could. I had moved back to Kelowna to be there for them! (i feel so lucky to have them at this time).
It was baby steps to re gain some weight and muscle but I was so glad to recuperate. I swam in the lake every day, cooked nourishing meals and finally was able to road trip to Vancouver Island for visit with family and friends. Having the simple freedom to drive and breathe in some salty + forested air felt amazing!
It took about a month to gain strength and weight back in my body to drive or build up little walks to go on my usual hikes again. I'll never curse carrying some some fat reserves again, as I'd be in much worse shape if i was too skinny when starting a flare- those extra muscles and soft layers can go fast.
It felt like I was getting my groove back.
By the end of my road trip to the Island my symptoms began to re appear...I had been following strict diets, getting counseling to dig into the mind body healing, being so sober can offer this gift of for clarity too, also regular acupressure and Naturopath medicine etc- All helpful i do believe! I had started to drink a little coffee and wine when I was feeling better.
I have now had to make peace with the fact those things- among many other food indulgences may never be on the menu for me. I am still grieving a fluffy nut mylk latte in the morning or occasional apple cider or winery celebration plus many other dietary indulgences that could be aggravating. My opportunity is I get to learn so much about cooking, ingredients and agriculture!
I'd much prefer to be alive with all organs intact. And thanks in advance for the coffee replacement suggestions, there just isn't one. and I am not ready to talk about it.
I want to say that those things are just potential re triggers and one of many angles to view the causes of Auto Immune re flare which could appear different for you/others.
Another reason for reflare is being the fact that I had a terrible reaction to inflectra- the iv biologic medication i was on and had to stop taking it prematurely. So I tried another called entyvio and it was to slow acting for the severity of my illness. Now I am on #3- Humira and fingers crossed 3rd times a charm! (...patiently waiting with deep breaths as the little moments of irritation, impatience and tears of futility do appear like a little rolling occasional wave as I get sick of being in the hospital or being at home and feeling like dull lifeless set of flowers ready for the compost. A delicate balance of choices in such moments. I will prevail!
I repeat often phrases like this:
May my heart be filled with loving kindness
May I hold my sorrows with deep compassion
May I be healthy
May my happiness increase
May I be joyful
May I be at peace
I want to thank all the loving and supportive humans. My heart turns into a 90s love song (truly madly deeply) when I think of all the little love notes and gestures of support. Wow I feel so loved and blessed. May we all feel loved and blessed. Especially by the vibrant light of our own sunshine souls.
I do get a little overwhelmed with protocols and suggestions at times as so much of it comes from professionals in the medical field, western and Eastern, naturopaths, medical mediums, healers from all backgrounds.
I've researched things until I've gone slightly crazy so i have to take breaks from that too. I continue to let my choices come from presence and not panic. Even in the Emergency Room (escspecially i should say) is so important to react from grounded wisdom and sometimes quickly.
Now baby steps like in nature when trying new supplements, medication, proticols. I struggled with ptsd after I came home from the hospital last time. What the fuck had just happened? I could hardly recognize my skinny and pale face in the mirror. Should i believe the doctor who saved my life with a bad side affect drug? He is not a bad person, just trying his best from his level on perspective. And when he gave me a prognosis of a chronic and incurable condition forever? Absolutely zero chance for full healing? I understand his urgency but he also didn't believe in any nutrition or natural ways to support. (*insert reason #1 among a few other i decided to switch doctors- may he be well).
I am a believer that we co-create part of what we experience here so I am so thankful for my new team of Doctors and my Naturopath who believe in me, a professional who wants to work in tandem with western medicine and see could see my vibrant soul!
A couple weeks ago before I was admitted into hospital he said my life essence looks dull and said I sounded like a mushy potato sandwich~ but he could see how bright my soul was and had believed and witnessed other ways to heal.
He as well as other ND physicians have seen healing of UC in people and eventually without the harsh meds. But baby steps here, he agrees honorably with western medicine for the severity right now- i respect that. Sometimes we need first aid and acute care. If this happened 200 years ago there's a fair chance wouldn't be here right now. So I'd like to take a moment to be thankful for 2nd and 3rd chances!
Like a another crack at making a baby (not me). Or another chance to say sorry, to start over, to take another shot at opening your heart to what it truly wants. To try again and succeed after a few precarious tries. To bask in times of relief, happiness, joy and soak them in.
Some people might judge me that I over share but one day i will likely over share a whole lot more in a book- so you might as well get used to it. If my story helps someone then I am being of service.
Or practice some boundary setting for yourself.
If myself or someone else triggers you, instead of sending them negative energy, take an adult time out instead of always reacting with friction.
Try muting or unfollwing people. I do it all the time and it feels great! Pick your battles wisely and be the peace youbwish tobsee- be the change.
Everyone's full of great unsolicited advice so I do my best to share through stories so we can understand eachother other~ rather than reach for who's right an wrong. Something I learned from the first nations communities.
May be choose choose love a little more often and trust that love will help steer us in the direction.
One if my favorite words is~Catharsis: the process of releasing, and thereby providing relief from, strong or repressed emotions.
"music is a means of catharsis for them, we can think more clearly after a cleansing catharsis."
So here i am day 11 in the hospital with only one visitor allowed (thanks mom). But ive been blessed with my own room overlooking the lake, (knock on wood i dont get moved).
When im not feeling well, I choose to be like a Queen Royal Jewal of the lake. Lady Juliana Emily born right here besude this healing lake.
The clock sometimes taunts me with its slowness but I am am bracing the light side of father time- steady, masculine, always there, the clock on the wall. So reliable, a grounded patient friend.
Clocks are always on time! I love being on time.
Something to embrace- NOT KNOWING IS OK (Apparently that needed to be captilized). The universe mostly mystery, transformations and uncertainties. Our true peace lies in accepting this. Not knowing absolutes and taking risks to let go of doctors i didn't resonate with + taking risks on new medications and sometimes needing to advocate for myself far more than anticipated. Being ok if i mess up. There is never just one way. Not one perfect protocol, or doctor or solution to a problem. There are maby ways we can seek through our inner guides and nudges. Plus wisdom keepers, formula creator's and scientists with hypothesis i am so in love with our desire to save lives.
But the dance is each unique for us all. A dance of hanging on and letting go.
So I soften my edges now and remember what my grannie whos now 90 said to me as a little girl: "Its a woman's prerogative to change her mind."
So I do that, I change my name, my hat, my boyfriend, my paint colors as I wish.
My 88 year old Grandmother mouthed through the downstairs window today- "You gotta keep the faith!!" With flared nostrils and a mist of tear in her eye. She made me a delicious soup today.
Foegive me if this post is likely a little drifty in thoughts, its steeped in some gravil and pain meds.
I deeply trust and connect with my breath and her soft, yealding yet powerful contain my mind to anntenae to bright light nourishing love.
I contain myself easily
I easily release thoughts or attachments not serving
I am filled with white healing light always
I am safe.
A big fear that I have been forced to acknowledge is my fear of death. Perhaps this slow and challenging period where I confront such fragilities in life will serve me again one day.
May all beings be free and patient and renewed!
Its like I just surrendered the fyck down. More. (Fyck: a word auto correct just announced. I'll describe it as a slightly healthier more organic way of sating fuck. "Kind if like nut mylk, a creamy word without the dairy and guar gum).
Fyck 2020 could you just calm down now? I'm ready to pour some anti inflammatory home made walnut mylk all over you Yumm.
2021 i see a golden utopian break from it all. But alas the break iand glimmers are right here right now- be open.
And for the love of God if we could take a break from battling and chafing and arguing for a bit that would be so nice. Too much friction causes inflammation- cheers to a break from that and vitality now!
Loving kindness is always the golden gift, Im here to keep stock piling the toilet papaer isle with boxes of couragous loving comfort roles.