A blog about a few auto immune diseases & all life's adventures. This blog is dedicated not only to my journey navigating life after being diagnosed with multiple autoimmune conditions, but also the not-so-serious parts like traveling, managing career, eating healthy, and having a good time!
A few weeks ago, I had my 9th dose of Entyvio. I’ve made a point of going on Tuesdays because ….
I’m a creature of habit, I have my favorite nurse and it’s quiet. And I get all of the good snacks. Wednesdays in this office are not unlike Wednesdays many offices in corporate America – an undertone of stress, lots of chatter and usually a surprise or two. Here, the surprises for me were that the room was at about 95% capacity and we now have a new nurse, whom i was very caught off guard by. I obviously treated her like she was dating a good friend of mine and was pretty quick with my questions and was pretty skeptical. Sorry about that, nurse #4, ya did great.
The rest of the treatment was pretty standard. Once I got off my high horse, my favorite nurse started my IV, and I continued working for about 30 minutes before my scratchy throat started as it inevitably always does, so I shut my computer off and wandered off on social media instead.
Side Effects – The next two days were spent how they almost always are … more sleeping than usual, flu like symptoms, the slowness, etc. all sank in and I tried to just remember that this comes first, not my social life and definitely not work, a notion I have continued to struggle with in recent months. I am still myself, just at a rough 55%. I have to imagine it is what getting older feels like? Guess I’ll know when I find out.
Henry knows when it’s Entyvio day or he’s just super needy, tough call.
Besides treatment – I’ve been particularly stubborn lately. With the resurge of energy, I’ve thrown all my effort into work and working out, with no sight of stopping soon.
At this time last year, I couldn’t imagine running over a few miles a week and anything over 40 hours a week of work – completely out of the question.
That has changed drastically – in a good way. For the first time I am challenged professionally and have a ton of ownership behind what I do. Which is also why I am never on here anymore apparently. But the other day I was quickly reminded that I’m actually not a Olympic athlete – I’m an upper 20 something who has two autoimmune diseases and needs to stop living a lifestyle like she doesn’t.
Two days post Entyvio – I woke up, fed Henry, let him out, and had to sit down immediately because I was feeling lightheaded and no one wants the call that Kate fell again and knocked more teeth out. Then I realized I hadn’t eaten much for dinner the night before – I was so tired I had just gone to bed early. So I ate breakfast on the couch before showering … but instead of showering, I closed my eyes apparently and woke up to our doggie daycare personnel keying into the apartment to pick up Henry and I was already an hour late. Oops!
The only thing I could think was – this is the anecdotal story you tell before you make a major life change and move to Bali. Spoiler alert: not moving – too much law school debt, but am definitely owning the fact that I took on too much and it wore me out. And while I know I was definitely tired, I hadn’t given myself enough recovery time after Entyvio. So immune system was down and my body pulled the alarm to remind me. Noted.
The other thing I have had a difficult time coming to terms with is the fact that right now, I cannot run long distances. Yes, in my last post I wrote about how I was going to run the half marathon in what is now one week away! That won’t be happening, unfortunately. My body quickly reminded me as well that i’ve given it a good go, but it’s time to slow down. My knees carried me 12+ miles a week for the first 7 weeks and then decided that would quickly wind down a whopping zero. I started off with a day or two of knee pain, which was just compounded by the barometric pressure being off the charts (exacerbating my inflamed knees – another major perk of autoimmune diseases co-occurring).
At first I just missed one run and gave myself a break. Then I missed a week of running because it was too difficult to walk back and forth to work and then also have to run in the evening – my legs just felt fatigued. And then it was exhausting walking to work so I took transit or rode a bike. After a little over two weeks, my legs recovered. I took up other activities during this time like yoga and riding bikes, so it wasn’t as if I wasn’t able to move at all, but it felt pretty extreme. Side note – people of Chicago, i’m late to the party, but Divvy is awesome!
I finally had to admit to myself that I still need the same amount of sleep that an 80 year old needs and running just wasn’t good for me. I enjoy it on a leisurely basis but if I’m going to do a long distance race like that – I need a regimented program built for me among many other things to seriously commit to a running schedule.
So I finally admitted to myself that my body just wasn’t ready to carry me through a half marathon, which is okay! It may never be ready for it. Oh well. Maybe i’ll do a 5k or a 10k instead, maybe not. It’s not worth beating yourself up over something your body is very clearly trying to tell you it doesn’t want to do. I don’t care that people have given me grief over it either, because we just don’t experience the same things, so there is no use in comparing.
All of this to say … It was a good lesson for me. I needed to slow down, which is why I wrote this post 2+ weeks later than I wanted to, sitting in a hammock on my patio, not worried about my running schedule and looking forward to these awesome vacations I just booked.
Happy World IBD Day! Well a day late, but better late than never, right?
This international awareness day holds a special place in my heart for the obvious reason of bringing awareness to IBD and autoimmune diseases in general, but also because a year ago I finally got the courage to share my story!
On May 19, 2017, I was a few months into another flare, feeling more defeated and overwhelmed than ever. I remember spending my lunch reading all of the stories people were sharing on Instagram and thinking how similar my story was to many of them. I admired how many people had the guts to talk about such intimate issues. A combination of my flare drugs and the emotions of the day reading all of these stories had me inspired, so I opened the Notes section of my phone and just started writing. I finally felt that it was the right time and I am glad that I did because sharing my story has brought me more joy than I could have ever imagined.
For those of you who don’t know me – I am one of the 10 MILLION people worldwide who suffer from IBD (wild, right?!) – specifically Crohn’s Disease. Receiving this diagnosis in late 2007 changed my life forever. Since, it has been a continuously evolving, uphill battle. Autoimmune diseases are particularly interesting, I heard them described pretty well today by Dr. Rob Buckman, whose work was featured on 99% Invisible’s episode called Breaking Bad News:
Autoimmune diseases are “a group of diseases in which the body defense’s attack itself and which you become literally your own worst enemy”
This can be incredibly life altering when you have to suddenly change everything you have ever known. But it hasn’t all been bad! Now, instead of viewing it as one of my shortcomings and something I was always hiding and apologizing for, it is finally something I am finally able to say has been the force behind one of my more proud accomplishments, which is my blog! & while I’m not drowning in sponsorships, I have finally confronted many of those negative feelings that derive from an invisible illness and try to turn them into a learning lesson, which has been a truly cathartic process.
Invisible illness can do quite a bit a number of your self image and self confidence, which was pretty apparent in my life. While physically I have looked very different over the years, it was how I saw myself that was the most alarming. Dealing with these issues is very isolating and can cause you to pull back from relationships, to treat others differently or to act what may be seemingly strange to others who aren’t privy to what IBD does to your body due to your sudden appearance and disappearance when uncomfortable … all of which I had been doing for the last decade.
But establishing a voice with the support of family and friends that later morphed into The Peaks & The Valleys has given me the confidence I needed to deal with Crohn’s and has now poured over into all other aspects of my life. While I am sad I have had to let the blog slow down so much due to other activities, I have to report my health is in a really great place! I tried to write a post about my 8th Entyvio dose but it was so uneventful that I decided to delete it. I finally have the confidence to talk about Crohn’s to others, even my new coworkers!
feeling super normal after Entyvio Dose 8
Living this truth and having this voice has not only deepened my existing relationships, but also brought me so many new, enriching ones as well. This year has been quite eventful and with all of them, The Peaks & The Valleys has made a guest appearance. I am quite humbled by people’s willingness to share their story or thoughts with me, whether it is via email, Instagram, in person or something quick over text. I would have never guessed this was what would have come from sharing such an intimate part of my life.
So, what’s next? I have decided to jump another hurdle now that my body is allowing me to move more – and that is running the the Rock & Roll Half Marathon! You can find me July 22, 2018, downtown Chicago, running 13.1 miles. I am still working on how to get involved with Crohn’s & Colitis Foundation’s Illinois Chapter & Team Challenge (if any of you are involved with CCF or Team Challenge, can you help me get a connection in there?! It has been surprisingly difficult to get a response from anyone.) But, any advice is always appreciated! Until then, I will be continuing to train and balance this flare-free chapter of life!