Crohnies and UC’ers: I need your input/advice/warnings/whatever you have to offer. My doctor wants to switch me from Remicade to Humira since we aren’t getting the results we want. I almost wanted to abandon ship at this clinic and find a new specialist, but he’s been working with other doctors and trying hard to help me out. He dealt with my annoying insurance company and got me the coverage I needed and called me personally to tell me it was approved. He’s a good guy and wants to help me reach remission. I want to test for antibodies and Remicade levels just to have closure and know it’s truly not working before I put more drugs into my system. Then, the plan is probably Humira and Mercaptopurine—which terrifies me because of all the risks, but the idea of avoiding antibodies and making it more likely to work sounds amazing too. So my questions to you all are: 1. Did switching from Rem to Humira alone do the trick? Or did you have to combine it with an immunomodulator for it to work? 2. Is Humira TRULY as bad as people make it sound? I hate needles but if they have a purpose I don’t mind the pain (hence my 8 piercings). 3. Should I skip the Humira altogether and try Entyvio, which targets the intestines specifically? Or try Humira, buy some time if it works for a bit, and then try Entyvio later? 4. What are some tips in general for Humira (I’m probably getting syringes) and what time of day to inject? 5. How did you administer the loading dose (4 shots ALL at once, or separately throughout the day)!? THANKS! I love you guys!
So….Drinking beer for the first time since New Year’s Eve. 😳 Wish me luck!
I’ve been taking German Chamomile oil for the past few weeks and I feel great.
On to the next bar 😏
Your downfalls in life are the same reason the Ducks don’t win big games: They see the “small victories” (field goals) as unnecessary accomplishments before the “big, real victory” (touchdown), (preferring to choose from 0 points and 7 points, but not 3) instead of seeing them as part of the big picture.
Stop seeing small accomplishments as “not good enough,” and let them add up to an amount that is just as great–if not greater–as a big accomplishment.
Kick the field goal.
You win games that way.
(And for you figurative ones): You win life that way.
PS- I have nothing against the Ducks; they merely provided me with a simile to work with.
PSS- Go Gators!
Here are some samples of the type of jewelry I want to start making next year. I’m thinking of selling them on Etsy and donating a portion of sales to the CCFA–this organization is great at organizing fundraisers, 5Ks, and other events to raise money for UC and Crohn’s disease research, education, and support!
What are some bracelet/necklace/ring styles you would like to see?
Back in the summer when I was teaching Pre-K, one of my favorite students came over and sat down next to me on a bench near the playground and started singing to himself, “God is gooood, God is good.” Then he ran off and came back with a flower for me. It was so random, genuine, and cute that it has stuck with me till this day.
Occasionally, I’ll look at this photo and think back to my thoughts as I held that tiny yellow and white flower, watching William run around, happier than any of the kids playing outside. I thought about the words he sang and I just sat there with a smile on my
face heart, agreeing with all of my being.
God is good. No, wait. “God is gooood, God is good”—William has it right. It may have been easy to let this slip my mind over the last few months as my illness got the best of me, but the little guy’s voice pops into my head and sings those 6 words, so cheerfully and matter-of-factly, that there’s no way I could ever forget it.
I really need to get back to doing yoga a few times a week, but it’s been pretty rough after this round of Prednisone—I’ve probably gained 10 pounds, my joints and bones never hurt so much, and my muscles are sore (without workouts?).
When I was squeezing yoga into my morning routine 3 or 4 times a week, my body and mind were probably the healthiest they’ve ever been. I was so flexible that I was starting to do some aerial hoop (lyra) sessions with my best friend, and she was getting me to squeeze my body into weird positions in a lyra hanging (what felt like) 100 feet from the ground. Upper body strength was no longer an abstract concept to me, as I was finally able to do—wait, could it be!?—a pull-up! Yes, it was just the one, but if you could see my abysmal attempts pre-yoga, you’d understand the significance of one full pull-up. And stress? Well, when the first thing I do in the morning is fill my lungs with deep breaths of oxygen and clear my head of any negative or worrisome thoughts…what about it? There is no stress. This is a wonderful thing for the autoimmune population, because we know just how quickly stress could trigger a flare-up of our disease.
A few months ago, I was doing yoga once a week, and each time, the cat would join me. At first, she was purely judging me—it was kind of pathetic how incompetent I felt doing a certain yoga pose while she glared at me with one of these faces:
However, the condescending looks soon faded and then Jules was joining me, holding some yoga poses of her own:
So, from here on out, I’m reinstating Yoga Caturdays (this makes it a guaranteed once-a-week minimum), and I’m also aiming for 3 or 4 days a week to dedicate an hour to deep breathing and stress release—because it’s time to start letting go of the negativity and what-ifs and replacing them with healing thoughts.
Three days ago, I made a heart-breaking decision that I didn’t even see coming–and one that I’m still processing. I took a leave of absence at the place where I feel most “okay” (health-wise and mentally, even on days when my chronic illness is stealing the show), and where I’m surrounded by the most caring, hilarious, and supportive co-workers I could ever think up.
This comic strip neatly summarizes my oblivion to the things going up in flames around me.
Before the school year started, the school district paired all of the new hires with a new-teacher mentor, who we meet with for mini-observations, professional development hours, and even a cup of coffee on days we might need to vent or seek teaching advice. I had never taught a grade lower than 3rd, so when I found out that my mentor, “Kirstin,” was Queen of All Things Kindergarten, I was stoked. She was even better than I expected—she gave me lesson plan templates, behavior management strategies, and ideas for establishing classroom procedures, all printed out and ready to go. However, even with this extra support, my illness caught up with me throughout the school year—I never met up with Kirstin; I didn’t make it to the new teacher celebration dinner; I missed morning meetings set aside for new teachers and the kindergarten teams throughout the district. I could make it to school, teach my half-day kindergarten class (sometimes suffering, sometimes managing with little to no pain, but always sleep deprived and not “totally there”), and get back home—but that was it. I had no energy or health reserves for anything extra.
Wednesday, my scheduled day to meet with Kirstin before the start of the school day, was off to a rough start after I essentially spent all night/early morning in the bathroom—seriously, sometimes I think I might as well put a mattress in there and make myself at home. She sent me a text saying, “On the way! See you soon :-)” but I replied, “Sorry, running late. Suffering in the bathroom.” (story of my life, right?) She was understanding about it and I explained everything to her once we met up; she had known I was out sick before, but not exactly why. I gave her the recap on my ulcerative colitis flare that has been going on since July, the Prednisone that is driving me mad, and the small battle that is brewing with the insurance company that doesn’t want to cover the drug I need to reach remission.
I told Kirstin about the responsibilities I just can’t take on anymore as Talented & Gifted Coordinator (on top of all of my health/mental issues at the moment), and she agrees that we need to get this off my plate and into someone else’s hands. My main focus is my class—22 kindergarteners who are expected to know all their letters and letter sounds, numbers 1-100, and 18 sight-words by the end of the school year (oh, and how to write short sentences)—no big deal.
Kirstin sticks around for the next hour and a half or so, observing and helping out when necessary. I’m running on 2 hours of sleep, walking around in what could easily pass as a drunken stupor, and completely “done”—I have mentally checked out, and I don’t even know it yet. I have no control over the noise level; I can’t find the materials that I just set down a minute ago; I don’t have the supplemental work ready for the students who keep telling me “I’m done!”
I go over to a student to work with him on his number countdown activity; I point to his number line and ask him, “If we’re going backwards from 20, what number comes next?” He looks at me and—he’s messing with me, I can tell by the smirk on his face, and because he knows his numbers, 1-50)—says, “Wait…is this the alphabet?” I’m not sure what it is about his question, but what I heard in my head was, “What are you doing?”
I’m crashing and burning, and Kirstin can see it. She looks at me with a bit of what I consider a bewildered look, mouth agape and eyes wide with a concerned look to them. I go over to her and talk to her about a leave of absence, which she had mentioned earlier, asking if I had considered it (I hadn’t—I was trying to keep my head above water, and taking time off didn’t even seem like an option). “Would it be ridiculous to take one now?” I ask, among a few other questions. I suddenly can’t believe that I’ve lasted this long in the classroom, especially after the last 4 weeks, when I’ve been about as adroit as a zombie and have had to “wake up” on the drive to school, unaware of where I even was at the moment.
The meeting with Kirstin could not have happened at a better time—it turned into a quick, necessary reality check that I might have otherwise missed. She felt bad about the situation and said she hoped she didn’t sway my decision, but I was thanking her and reassuring her that this was exactly what needed to happen. Yes, it’s difficult to accept—I don’t want to just pack up and leave so suddenly, leaving my students behind and feeling even more like a failure—but I’m running on fumes, here.
I’ve been running on fumes. No, actually, I’ve been letting the days go by (with my physical, mental and emotional health on the decline) in a way that is more akin to the portrayal of that dog in the comic strip than anything else—sitting calmly (on the outside, at least) and saying “This is fine” when, actually, it’s not fine. I’m not fine—I might look it, though, and damn, is that deceiving. I have a chronic illness that isn’t going to become less chronic by living in denial and by trying to do more than I can, no matter how badly I want to. So, I had to let go and request a leave of absence once I saw that it was time to leave the burning room and focus on my health and my path to remission.
“There’s a long road of suffering ahead of you. But don’t lose courage. You’ve already escaped the gravest danger: selection. So now, muster your strength, and don’t lose heart. We shall all see the day of liberation. Have faith in life. Above all else, have faith. Drive out despair, and you will keep death away from yourselves. Hell is not for eternity. And now, a prayer – or rather, a piece of advice: let there be comradeship among you. We are all brothers, and we are all suffering the same fate. The same smoke floats over all our heads. Help one another. It is the only way to survive.”
―Elie Wiesel, Night
This excerpt goes perfectly with a beautiful gift I received from a good friend/co-worker at the beginning of this rough week (I will call her “Judy” in case she doesn’t wish to be mentioned by name). Anyhow, I walked into the classroom and found a beautiful, golden gift bag on my desk. The real treasure, however, was inside (as life often shows us)—a smooth, dark blue stone heart with the word ‘strength’ engraved in white. Okay, I lied. The real treasure was the note Judy had written along with it, because it reminded me of the goodness and the support that she has been providing me with since the pre-planning days of the school year. And now, she was giving me a literal representation of the strength I’m going to need on this journey of mine, wherever it takes me. The timing was perfect, too, because this was the same day that the Prednisone depression had sucker-punched me square in the chest, and hard enough that I had considered finding a last-minute substitute to cover for me. In my hands, I held a stone to betoken both the strength and heart I needed to gain back—the strength that had been slowly trickling out of my being, and the heart I was losing. “So now, muster your strength, and don’t lose heart”—a line from one of my favorite books, brought to life, and now in my pocket. How wonderful is it when someone’s act of kindness towards you reaches depths that neither one of you were aware of?