Delicious Syrniki! ๐๐
(first solid food I was able to have since 2023)
Screw it. I made and had those a few weeks ago.
Sharing this picture and moment is a big deal & emotional for me, because it's the first solid food I've eaten in 19 months.
You may think that's impossible. Well, it's not. Let me tell you why:
๐ฅ I've been struggling with an autoimmune condition (MAS, among them severe, chronic inflammatory bowel disease) since years & couldn't digest anything anymore since August/September 2023 after it got worse due to massive adrenaline & cortisol overproduction in my body; hormones that are notorious for causing autoimmune diseases & making them flare/worsen significantly. ๐
โ๏ธ In fall/winter 2023 doctors informed me my condition has become so severe it's considered terminal & I started to require palliative care in the shape of parenteral feeding (= bypassing the digestive tract) via an intravenous port & nutrient/fat/glucose solutions being dripped into me to keep me alive a little longer & try to see if any treatment still works, after about 2 years of almost exclusively being able to have "space food" - high caloric drinks to sustain me - along with starting to receive high doses of tranquilizing pain killers & immune blockers, which were helpful, but have severe side effects. ๐
โข๏ธ In March 2024 I was then diagnosed with stomach & duodenal cancer as a result to how severely the disease had escalated. ๐ค
More of the story below the cut. Otherwise please just appreciate the delicious food. ๐๐ฅโจ
Bottom line is, I was very reluctant to share this, bc I'm very emotional about this. I cried while eating those, bc tasting something sweet, creamy, delicious & warm on my tongue has been something I couldn't experience in so long & there was a real risk for me to die without ever being able to taste something nice again. ๐๐ฅฒ
It was a bit too ambitious, so for now I'm back to broth and space food and the occasional spelt porridge.
But here's to celebrating a huge win in my life! ๐๐ผ๐
On with the story of how all this developed:
By May 2024 I was being treated with 3x the regular amount of blockers to regulate these stress hormones, but it didn't do much, since the underlying reasons for them being as high were nothing I could resolve, however hard I tried.
There were many additional health issues I went through and in parts am still going through in this time as well, that put me in critical condition, such as a bone inflammation caused by an infection merging with arthritis in my foot, resulting in a debridement surgery in September 2023, phlebitis as a result to wearing the intravenous parenteral port for so long in June 2024; having sinusitis for months, as a result from a lacrimal gland inflammation due to too much crying, inflammation in many organs connected to the digestive system (autoimmune pancreatitis, hepatitis, cholecystitis etc.) due to the intestinal and stomach inflammation and ulcers spreading and severe heart problems, due to a preexisting heart condition being worsened by the anesthesia during treatments, the physical weakness all this caused, as well as severe and ongoing stress that persisted daily due to a social situation over the course of 14 months.
Eventually the underlying situation lessened a bit and I felt confident that my upcoming cancer surgeries & treatments would go well and finally bring the anticipated relieve I've waited for for so long with the necessary peace to prepare, go through all this and recover, before a final escalation happened, just days before the long-planned hospital stay for surgeries to cauterize the ulcers and remove cancerous growths in my digestive tract started on 16th September 2024. It continued to escalate in the background throughout this time.
But anyways, in early October 2024 I finally was able to start chemotherapy, away from all this.
It works well so far, I'm doing better since, the hormonal overproduction has lessened somewhat & my mental health has stabilized somewhat. I'm still getting IVs, because my ability to digest is still inconsistent and there's been some throwbacks due to side effects of the chemo. And after over a year of no digestive function it was also questionable whether my system would be able to pick up work again at all or whether I'd simply kick the bucket and starve to death eventually. The IV nutrition was already a slow version of that, I lost more than half my weight since September '23, I barely have any muscles left and need to recover from all that and mental health damage...
The bottom line is, 2024 and a large chunk of 2023 were really bad and thankfully 2025 looks significantly better. There's finally a treatment that works a bit and helps my health improve, although chemo mostly kills the diseased tissue and regrowing fresh one takes time, regeneration will never be flawlessly possible and there will be a lot of permanently impairments and scarred tissue inside of me.
And the places I'm in and people I surrounded myself with are respectful of this and I feel at peace, loved and confident once more.
๐๐ผโจ But after all the hardships,
I have a positive thing to share today ๐๐ผโจ
I had these delicious thingies up there a few weeks ago, sharing them with a kind neighbour who supported me with when I needed help bc of mobility issues and other problems throughout this time.
I actually made a post mentioning it but was so was reluctant to share and celebrate this milestone, because I'm very emotional about this whole journey, but it is such a huge win for me!!!!! ๐ญ
I already said it above, but I actually cried while eating this, just because tasting something sweet and creamy and delicious and warm on my tongue and in my tummy that is so much in pain the entire time, is such a comforting sensation and has been a pleasure denied to me for so so many months and also because there was a serious risk for me to die while all these horrible things were happening and for months I didn't think that I'd ever live to taste something nice again. ๐
I'm still here every day, feeling like "oh gods, I'm still alive, I can't believe I'm still alive and get to experience goodness". ๐๐ญ๐ซ
I went a bit too ambitious with trying these and still got symptoms again and had to go back to space food, broth and some low acidic fruit. Taking it slow rn. But you know. It's a progress. Healing is messy and not gradual. There is no such thing as perfection in human beings. Decency and trying, sometimes failing, but always staying in motion is quite enough. ๐ผ๐
