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!
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!
I’m off to work! I can’t complain, I had a great few days off, although the cold had me seriously deterred from doing much. Another reason I am happy to have Henry; I would’ve stayed in all weekend if he wasn’t so rowdy. Not shockingly, he had just as great of a time at the dog park in 20 degree weather that he does in 80 degree weather, we just can’t stay as long, but it was definitely worth it. The majority of the weekend was spent seeing girlfriends and catching up on things we have all missed over the last few weeks and months, which felt amazing. I love reconnecting with friends.
I can’t help but mention, Alex had a pretty awesome weekend too. Look at these pictures from his snowboarding trip to the Upper Peninsula of Michigan: (all unedited, how?!)
Back to my weekend … Yesterday was definitely the highlight – I spent the afternoon with some of my favorite kiddos, first at the Nutella Cafe on Michigan Avenue, and then off to Dylan’s Candy Bar we went! What better way to spend a day off school, right?! Personal recommendation: the Nutella crepe with strawberries is the best thing on the menu.
Since our main food group was sugar (with the occasional vegetable or grain), I thought a veggie heavy option would help offset the headache I had from eating two Nutella dishes and bringing home Dylan’s Candy Bar’s best sour dots after. I really thought those would’ve lasted longer …
I have been craving pasta lately. Gluten free pasta actually isn’t too bad. Spaghetti squash is a really awesome alternative as well. But, with both of those, I have been there, and eaten that many, many times. Three zucchini in my fridge were on their way out, making zoodles an easy and logical option for the night. The sauce is really what made it so great, though! Bonus was that I went to bed actually full. And it only takes 15 minutes!
3 full zucchini
1 tbsp of olive oil
Spiralize the zucchini into noodle-like shapes. Lay them out across paper towel and sprinkle with sea salt. Let sit for a few minutes, up to an hour, to extract some water from the zucchini.
Heat olive oil in a pan on medium heat. Add zucchini noodles and cook for roughly 4-7 minutes. I like a more al-dente finish, so I stick closer to 5 minutes, however, I have seen any recipes say to go for up to 12-15 minutes. In my opinion, if they go past 7 minutes they get mushy, which isn’t always appetizing.
1 tbsp of garlic
salt and pepper
Optional: 1 tbsp store bought Pesto (not the Genovese kind, that is definitely not my jam; the Costco version is 100% my favorite but I can guarantee not the healthiest)
This sauce is so great, we have it with chicken in the summertime or anything grilled. It also is a tasty dipping option for snacks.
While your zucchini noodles are cooking, combine the avocado, garlic, lime juice and pesto if that is your thing, in a blender. I used my awesome new immersion blender from Braun, which worked out perfectly! Mix until it thins out, but still has a cream like consistency (one you associate with Alfredo sauce). Surprisingly, this stays fresh for a few days in an airtight container. You know how guac spoils within that day? This doesn’t.
Once the noodles are done, combine them in a bowl along with the sauce and toss until all the noodles are coated. After you feel they are sufficiently covered, add some goat cheese to the top and as always, some Sriracha (cha cha)!
Just when you thought the resolutions posts were beginning to die down … here I am, with more talk about change! Yep, everyone is still freshly committed to those resolutions for the year and were all faced with the challenge of how we will, in fact, live our best lives in 2018. While some of these resolutions are actually bogus, self evaluation and improvement is, and always will be, a good thing.
Where to start …. I had a running list on my phone about hopes for the next year, which all seem great, but come January 10, I still didn’t know where to begin because there were so many things that could be changed. I talked about some more of the fun stuff in my New Years post and some of them I have actually addressed and implemented for change (i.e. working out and taking my vitamins was real simple it turns out and vacation planning is more of a luxury than a chore), but I didn’t talk about the tough stuff in that post, like the planning for the future stuff. So I sat down to figure it out for myself, or at least give it an effort by thinking about the big things that mattered to me.
I wrote down a few more questions I needed to answer, like: What am I doing for myself this year? What am I doing for my community? How am I going to continue improving my health conditions? What worked last year? What is still unresolved?
But I want to focus on this one today:Where do I want this blog to go in 2018? I love being able to share so much of my personal life on here and my medical journey. It has lifted an enormous weight off me being able to fully own my health conditions and to stop apologizing for those ‘shortcomings’. But as many of you know, there are so many other facets to my life and I would love the opportunity to expand on some of those with you. I really enjoy talking about current news and legal issues pertaining to health, but also to my life in general, as a 27 year old attorney living in a big city with an interest in things like the environment, technology and as of recent, investing. I know this seems out of the scope of what is usually talked about on here, and while my health makes it feel impossible to actually ever have control of my finances, budgeting and investing in general are both high on my list to become better versed in this year.
Who’s ready to talk about finances?!
Henry is! Or he is asleep …
Budgets. The excuse that I just graduated and am just starting off my career is no longer cute nor true. This May, I will have been out of law school 3 years. I cannot believe that as I type it. It is time to really start determining what I need to do to better save. I am not saving for anything in particular like a house or a car, but more for a good opportunity. If something presents itself, I want to be able to do as I please. I compiled a running list: salary after taxes, rent, medical expenses, and loans were the big numbers. With what remains, I wanted to answer the following questions:
What expenses can be cut?
What portion can I put towards investing?
What should I realistically spend on gifts and events?
How much can I put towards travel?
What’s left, and how should it be allocated?
This is where I decided a budget app could be a good start so that I can live my most financially responsible life in 2018. I have always been able to manage my checking account and save where needed, but my needs have changed, and I need to allocate differently. I wish I could say I made a breakthrough or was able to endorse a specific app or product, but that isn’t the case. What I will share are the few decisions I have made after my research and also what I did find so you can sort through yourself and also make the best decision for your situation!
When it comes to budgeting, there are a ton of applications out that can help you manage your accounts, however, so many of them cost money. I am okay with that when I know I will use the product, but right now, I’m still a little weary. There are a ton of articles breaking down the best apps for specific reasons, which give a breakdown much better than I could, so I just listed by price.
As of today … I downloaded Mint. Mostly because it is one of the highest reviewed and it is free. I am not sure whether a budgeting app is what I need or if I need to do more financial planning, so I am giving this one at least two months before I make a next move. It wasn’t the most exciting thing I have done and was also a little depressing seeing how much I spend on food (Whole Foods is literally across the street), but I needed these hard numbers in order to motivate myself to change anything.
In the future … if I actually stick to these budgets, I will likely switch to a more manual based app that allows me to control what I am budgeting for, as some of my budget needs are more specific than the general population. Apps like Home Budget are pretty comprehensive and allow more control of the budgeting guidelines.
Investments. Budgeting and investing go somewhat hand in hand. When I discovered these budgeting apps, I quickly fell into the deep novice investing hole as well. Now that I am up for air, here is what I found:
I am starting with Acorns. This investment app works with your bank account to utilize your excess change from a transaction and allocate it towards investments. So say you spend $11.30 at lunch, Acorns rounds up to the nearest dollar and puts that .70 cents towards investments, from what I understand. Once you get to $5, it will start investing. There are some downfalls regarding cost, it charges $1 a month and once you are over $5,000, it charges .25% of your account balance. Also, it can take up to a week to get your funds paid out, but that’s what you can expect with an app like this. It seems to be a decent starter app for novice investors like me. Other apps like Robinhood are better suited for those who are well versed in investing, aka those who know what investments actually are, unlike myself, but aren’t quite comfortable enough to start trading on their own. Another new year’s resolution.
I’ll check back in with you guys in a few months if you’re interested and let you know how any and all of this goes. If you have any suggestions let me know! If not, plan to hear more about some career stuff, some finance stuff, some creative stuff, some more Crohn’s and Thyroid stuff, some exciting guest posts, and as always FOOD STUFF.
Another rushed morning. I thought an early morning appointment would make things easier for the rest of the day but I was just more groggy than usual. My first thought after looking at my watch to realize I was 10 minutes late walking in, was wow, everyone here today is so young. The entire room looked within a few years of my age and in typical millennial fashion, they were all multitasking their day jobs on their laptops with whatever treatment they were sitting for. You would think we would were in a coffee shop, except everyone had IVs hanging out of their arms or hands instead of a peppermint mocha or espresso. I was so curious … what are they here for? Any potential Crohn’s friends?! I still don’t quite have the nerve to ask people that and figure that if they felt like sharing, you would know. It was a nice change of pace from my typical treatment days, but I still prefer when I am the only one in the facility.
I worked out the night before, pretty hard for me, so I was already fairly shaky coming into the appointment. I did the usual – outlined what all I would eat after the appointment and how the day would go. Of course none of that would actually happen. I got home, made a smoothie, Henry ate part of a plant and then waited for me to get home to get sick, which made my smoothie even less appetizing. I finally took a nap, only to wake up feeling much, much worse than I usually do. It felt like New Year’s Eve day all over again. I am sure having the stomach flu or food poisoning or whatever that 4 day spell was, didn’t help my nausea situation at all… but this eventually passed after about 3 hours.
Typing while keeping the IV straight is both difficult and annoying for me.
That night, I had one of my oldest friends, former roommate of three years, and current doctor, stay with me. We stayed up late talking, which led me to sleep in until 1130a… when my phone kept going off. I was pretty alarmed when I woke up but I obviously needed the sleep! Sleep is so important for me after Entyvio day. I don’t understand why completely, but it sucks the energy out of me completely. Any of you on Entyvio experience the same thing? I understand how it works in theory, but the day it is administered it is hard for me to remember all of these things I have read and learned about because it is so personal to me.
Work, work, work. I am sure many of you are experiencing the same thing in your office, but a chronic cough and congestion has swept the floor, another factor that doesn’t really allow me to live my best immune system life. I feel paranoid, but especially after Entyvio treatment, I run from anyone with the slightest cough or cold. Even the Entyvio website states that this medication will increase your risk of developing a serious infection, and after trying Remicade, Humira, Cimzia, and now Entyvio, I know very well that it is not a “if” but “when” situation when it comes to being exposed to the flu or common cold in the winter time and catching it from someone near you. I am fine with all of this now that I know how to handle it, but it doesn’t stop me from being the most standoffish coworker ever this week. But hey, Entyvio is working really well for me, we can’t mess that up, people! I know they would all be very understanding if I explained why, but sometimes the effort isn’t quite worth it.
Okay, so it wasn’t my happiest Friday …
Side effects will always be an issue with biologics, immunosuppressants, etc. and a major one is joint pain, which I started talking about in my Dose 4 post. Did you notice I dropped in there that I worked out? I did! It sucked, quite frankly, but was much better than my attempt a few months ago. I still have more joint pain than I am used to, but with the help of a number of things, it has gotten manageable. I am currently also taking sulfasalazine and low dose naltrexone, both of which have been beneficial regarding joint pain and apparently are pretty commonly used for these issues. I can tell that overall, my mood and health is improving because I am eating more, feeling hungry, and also thinking about working out, as in actually wanting to. Big strides for me!
This is a big part of my resolution to keep improving my health condition. Keeping these appointments regular and also keeping up with my holistic treatments like acupuncture and cupping play an important role in maintaining my lifestyle … which reminds me I really need to make an appointment for both. Until then, I am working on deciphering my recent blood work results, which showed great Crohn’s scores! But not so much with the thyroid. There is always room for improvement somewhere, right?!
HAPPY FRIDAY! I am having a great start to the day but I have Entyvio at 9a, so that is a different story … Let’s be honest, I have been in a serious rut with this blog lately, but last night I sat down and had the ‘breakthrough’ I needed. I can’t wait for you guys to see what the next few months have to bring! I promise it will be more informational, but for now, I hope this post below makes you laugh.
I couldn’t help myself …. I was so nostalgic about 2017 as a whole, I wrote Henry a letter, as if he is going to be able to read it or something. While this does show my ultra-crazy-dog-mom side, if you have met Henry, you will understand. Should I read it to him now?!
Henry’s Howling Happenings
I cannot believe it has already been one year since you joined our fam! From the swamplands of Lake Okeechobee, to Uncle Andy and Aunt Samantha’s house where we met you, can you believe only two short weeks later you would be riding in the cabin of an airplane on your way to Chicago?! It was a lot of activity, but this was only the beginning. Since then, you have done so many fun things. You have been on more road trips than I can count. While many of those trips aren’t the most exciting ones in the world, your excitement is the same every time. Most of the time, it is just the dog park or our new favorite spot, the dog beach, but driving in the city makes you a little nervous, and I can’t blame you for that. You have also made so many new friends (both human and dog), have tried many more foods than I ever intended my dog to try, yada, yada, yada. We have even made up apartment games like hall ball!
We can’t believe how far you have come. When you first came to our house, you were a bit altered from the medication you were on after surgery, but once that wore off, you were very nervous and startled by everything that surrounded you. I never realized how loud the city was until watching Henry react to it. We would take you for walks, thinking you would be like other city dogs and quietly comply and trot along the sidewalk, looking lovingly at your new owners, however that wasn’t the case. You definitely were pumped for this new adventure and to be hanging out with us, but other dogs didn’t quite understand how to take that energy. We tried to expose you to as much as we could, in a healthy way. Everyone, please picture the dog parents from Best in Show, re: Busy Bee. That is us. Your first big outing was to Navy Pier, where there were so so so many people and new doggies to sniff. This was also your first encounter with kids! You nailed it.
But when it came to the other dogs like I mentioned, you were also super excited. They didn’t look like you, which made you even more curious. The ones your size became your favorite. The small ones, you didn’t know what to do with. You barked and barked and barked at them, until we realized that, well, we have to teach you how to talk to them in a way that they understand and that makes us comfortable. So, we went to doggie school at the Anti-Cruelty Society. This worked out great, until the dog flu broke out again, and we couldn’t go anymore. But you learned the basics! I thought I was proud of myself for finishing graduate school, turns out getting you to finally learn “sit” is just as gratifying.
About two months after you arrived, we became more comfortable with your behavior and our handling of you. The biggest thing we had learned at the time was that we cannot separate in front of you or you think it is the last time you will ever see us and then you scream so loud, it is almost comical. This has definite gotten better. You attended a beer festival in February, where you made the newspaper (while wearing a scarf), and then went to meet your uncles house for the first time. That was a longgg weekend for you. While it wasn’t the smoothest sailing with Jack and Baxter the first day, we happily know now that they are your pack. Little did my parents know Henry could be such a common resident in their guest suite… This is now one of your favorite places. It is quiet, you get to hang with your buds and spread out a bit, while also being the center of attention. Lucky guy.
You have covered a very large portion of the Midwest by car with us. You have spent a couple days in Ohio, more than a few in Michigan and Indiana, you even went to southern Illinois for the solar eclipse! Sorry we didn’t get you glasses so you had to stay inside… You visited numerous parks like Starved Rock with one of your girlfriends, you attended brunch and once again made the paper (Chicago Tribune!), you marched in the International Women’s Day Parade (unknowingly), you cheered on the runners at the Chicago Marathon, you went paddleboarding on your made-up birthday with Alex, you ate Thanksgiving dinner out of Van’s hands, you did Tour de Dog Park (visiting all 3 Dog Parks within walking distance in the same day) at least 100 times this fall, and most importantly to me, you willingly laid in bed with me for days when I didn’t feel well. You did your fair share of scaring us as well when you had kennel cough (which ended up giving me bronchitis) and also a few bacterial infections that made you real sensitive.
Oh and you received a ridiculous amount of toys and presents from your parents’ friends. Like an absurd amount for a dog. You have had Bavette’s more than I have! Not to mention the numerous stuffed animals, rawhide bones, jerky, etc. that our friends so generously bring for you, although you still let them know you are the boss by letting out a very prominent bark as they walk in. We will continue to work on that one, buddy.
Henry, you have taught me SO much over the last year. 2017 had a number of wins in my life, but you take the number 1 spot everytime. I have always loved dogs but having a large, young dog, transplanted from another place to the city, requires a unique level of care. You get me up and moving when it is literally the last thing in the world I want to do but know I should (mom guilt), but also you don’t make me move until I am ready when I have a rough Crohn’s day. You aren’t an early riser, you would much rather sleep in. Everyone is surprised at the level of which you like to snuggle and you love being the center of attention. There have been more days than I can count in 2017 that I have just felt down and out, wondering why things are like this for me, and while I have an amazing support system of humans, it is just nice even when I work from home to have you sit next to me and not judge me. You are in tune with everything I do and I appreciate you for that!