Happy Thanksgiving everyone! Today I am grateful for good friends, good food, and sweet kitties. What about you?
Also, it's Day 28 of the #30daychallenge today. Getting close to the end folks! And no, idk why I have moonface in my vids/pics the last week or so. Haven't had Remicade yet this month, so it shouldn't be doing that. O_o
I had a really hard time coming around and posting this, but its a part of my journey & reality. The first photo is from today, the second on from the end of August just before my emergency colonoscopy (I weighed a whopping 87.5 pounds), the third from just about a year ago when I started getting sick, & the last from a year and a half ago after getting back from Europe.
A lot of people always ask "are you getting better?" and I always have mixed feelings with this question. My answer is yes and no. Am I doing better than I was in August? Yes physically we are getting there, but am I better than I was a year ago? No, quite the opposite. •
This disease has taken a lot from me. I don't like taking pictures of myself now and often find sometimes I don't even recognise the person I am anymore. I look at pictures and can tell where my highs and lows have been in my journey. I look at old photos and feel a slight ache because I have come so far from that girl in the last photo and I don't think I'll ever quite be her again, physically or mentally. I was forced to change, I was forced to accept this is just how it is now, and forced to carry forward whether I was ready or not. Life doesn't stop. I don't feel confident, I don't always feel pretty, I don't always feel strong, and I don't always feel like me. Sometimes I honestly feel like a stranger has stepped into my body. •
But you don't see that with invisible illnesses. In every one of these photos I'm smiling. I have posted some of these photos before and have been complimented and praised. Told how pretty I am, how happy I look. But it's just a photo, there's always a bigger story. Especially in the first and second one where I feel like again we're hitting a low. •
To anyone with an #invisibleillness , know you aren't alone and you are visible. Someone knows what it's like even if they can't see it. And just because people can't see your pain doesn't mean it's not real. Are you getting better? Yes and no, because every day is a little different and that's just part of our lives ❤
When you look back at photos and remember the worst flare to date and you can't even recognize yourself. I grew up the chubby kid, with super low self esteem, always afraid to go outside the comfort of our home because I didn't think I deserved to have fun. My confidence skyrocketed once I lost my baby weight from my first ever Colitis flare in 2011 which left me "skinny" and afraid of food. Fast forward to 2016 (left photo) when I was 30 lbs overweight, taking 60mg of prednisone everyday for over 3 months consecutively. I was at the lowest of lows, the poster child for #moonface , miserable and at the end of my rope. #IBD is more than a bathroom disease. It will change your life and skew your perception of reality. The side by side comparisons still blow my mind, looking at two completely different people. This to me is the definition of an invisible illness and the fact that it took over a year to see such a drastic difference is mind blowing. Damn thankful I was able to receive the medical attention and care that I needed to bring me back up after the lowest of lows and give me my damn life back.
Been feeling 70% better most days. Have another follow up with one of my specialists tomorrow.. And 1 in 3 weeks with my GI... another to see my new rheumatologist in London in a month.... maybe after that I will be allowed back on remicade. For now I have the lovely prednisone moonface that I will deal with since the drug is helping keep my uc and lupus symptoms at bay. Thanks for all the patience everyone has showed me. I appreciate you all 😘 #lupus#remicade#ulcerativecolitis#spoonie#ibd#spoonieproblems#crohns#moonface#prednisone