Here's What I Learned About Being 'Healthy' After a Bone Marrow Transplant

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Being a healthy human is different for everyone, but for me, it’s always had a special meaning. When I was 15, I began to have serious health issues and was later diagnosed with celiac disease and systemic idiopathic juvenile arthritis (SJIA). By the time I was 18, I was diagnosed with a rare rheumatological blood disorder (MAS/HLH) that would eventually culminate in a bone marrow transplant in July of 2018. Over the past 6 years of my life growing up with chronic illness & 10 months of bone marrow transplant recovery, my vision of what it means to be a healthy young woman has evolved. It turns out that the ‘wellness’ guru’s on Instagram aren’t always right after all.

  1. Health is radically different for everyone & being chronically ill or disabled does not mean that you are not healthy:

It’s incredibly ableist of our society to assume that ‘being healthy’ is to be without a disability or medical condition. Some people, like myself, do our best every day to live a healthy lifestyle that fits our bodies, minds, & souls. There are plenty of non-disabled, able-bodied people who are unhealthy & yet have ‘nothing wrong with them’ based on societal norms. I know plenty of skinny blonde girls who look like they belong on the cover of a magazine, but eat every day like an overweight upper middle-class white dude at a bar. This idea that having a medical condition by default makes me an unhealthy person perpetuates the idea that I deserve or caused my condition, which is not the case. This is just how my body is and how I react to that reality is what determines my health, not your image of what a ‘healthy person’ should look like or be. Disability is not correlated to an unhealthy lifestyle. In fact, most people with disabilities and medical conditions put way more effort and knowledge into their health than the ‘typical’ person. There is no one way to be healthy or live a good, happy life. Nor does that have to include ‘curing’ a condition or ‘fixing’ a person. In my case, I got a cure for my chronic illness, but that doesn’t mean that everyone will or should. Sometimes being healthy is living your best with what you got.

2. Health is about the Mind, Body, & Soul:

Wholistic wellness is most certainly a thing. Being in the right mental & spiritual headspace has a lot to do with how you cope with life on an everyday basis. I started to bring meditation and mindfulness into my life about a year ago and it’s helped me calm down & manage my anxiety. I’ve been fortunate that it’s worked well enough for me to be without anti-depressant/anti-anxiety medications (which isn’t a bad thing either, of course. Pill shaming doesn’t help anyone). But whatever method works for you, it’s important to take time to center yourself in the world and find meaning in your everyday life. For me, this usually includes drinking an iced coffee or tea, going on a jog, reading a book, or taking a nice warm bath to recenter myself. I try to take it a rule to do something for myself every day — just for 15 minutes — that makes me happy.

3. Base your performance on yourself & not others:

When I first started working out again post BMT, I had to realize that I wasn’t going to be able to do what other people were. Not that I ever had been able to before, but this time around it was much more extreme. After chemo, living in a hospital for 30 days, and 100 days of isolation, my body was pretty weak. There was a point when I couldn’t get up a single step. Every movement in my body felt heavy and impossible. I couldn’t imagine going outside for a 15-minute walk. So, I started with a single loop around the block. I started with going up and down the stairs and doing household chores like laundry. When I was finally cleared to run, I ran about 100 meters and then immediately had to stop. I started by pushing for one minute of running, then two, then five. Today, almost 10 months later, my average mileage for a run is about 2.5 and a long run is about 5 (which takes me about an hour and 15 minutes). I am, by no means, a “fast” or “impressive” runner. That’s not the point. The only thing that matters to me is that I am doing it, my way (which is very slowly) and making myself better. This is the point of all fitness — just do your best. As long as you’re actually trying, you’re treating yourself the best you can.

4. Cutting out food doesn’t always equal a healthier diet:

As someone that had celiac disease for 5 years, I know that cutting out food can be tricky. Post-BMT, I don’t have celiac anymore (yes, I know, that’s a real thing that can happen), which means that I can eat bread again! Not only has this drastically changed my diet, but it’s become obvious to me that my old perceptions about my gluten-free diet were really wrong. I used to tell people that “I could never gain weight” or that “my diet was a lot healthier” because I wasn’t eating cookies, cakes, and bread. While this might have been true to some extent, the food I was replacing it with wasn’t better and probably much worse. I relied heavily on frozen food, which is low in calories and nutrition, as an easy way out. Now that I’ve been able to eat without allergies & celiac, I do eat a lot more protein and diverse kinds of food. While I’m not trying to hate on the gluten-free diet (if you have to do it then you have to do it) I do think that people forget that it’s important the way you do it and not just that you’re not eating bread. I see this a lot with vegetarians and vegans too. You still need to feed your body with nutritional food & not just microwave chicken-free soy nuggets.

Worthington, OH December 2018 (6 months post BMT)

5. Sometimes you gain 10 pounds because your body needs to gain weight to be where it should be:

One of my favorite phrases that I’ve heard on social media lately is that “you don’t exist to lose weight.” This is a very personal subject for me and having anorexic tendencies are something that I’ve struggled with on and off since middle school. Add a chronic illness and rapid-fire medication changes to the mix, and you’ve got yourself quite the crisis at times. When I first got out of the hospital post-BMT, I lost 15 pounds of muscle. Then, I gained weight again, to the heaviest I’d ever been, at 140. Now, I’m back at about 120 pounds. Looking back, that’s exactly what my body needed to do. It was figuring itself out, dealing with steroids and chemotherapy. That’s perfectly okay. It’s also going to keep doing that for a while, especially as I become more active and medications continue to change. How hungry I am on a given day has a lot to do with my medication and various other BMT related issues. All of that is okay. I don’t need to be in a constant state of getting smaller. I just need to be in a constant state of doing my best.

6. Essential Oils & Other Home Remedies Can Help, but Not Replace. There’s a Big Difference:

When my transplant doctor, who had also recently undergone chemotherapy, recommended essential oils for my headaches, my first thought was skepticism. I’d seen the posts on Facebook, the harmful anti-vaccination Mom’s, and ‘natural healer’ propaganda on social media. But, I decided to give it a go because my doctor said so: Rosemary oil for my hair, Peppermint tea for nausea, & Tea Tree oil for headaches. What I found is that they do actually work! I love essential oils now & would actually recommend getting some on online. However, they’re not a replacement. Using Peppermint oil for my headaches actually helped me get off of Oxycodone, but I do still have to use it sometimes & that’s okay too. These small home remedies can help manage symptoms, but they should never ever replace the guidance from a medical professional or be used instead of medications.

7. Organize. Organize. Organize:

I love my planner. I love lists. I love organizational bins. Why? Because they make my life feel more… mine. In the pure chaos of dealing with a health crisis, it’s important to give yourself space to deal with your emotions and you can’t do that properly if everything around you is also in chaos. I might not be able to control certain parts of my health, but I can react to how I respond and organize them. Get a pill sorter! Put your appointments in your phone! It does make a difference.

8. Embrace your inner Mary Poppins!

Here’s the deal: people with chronic illnesses or disabilities are the original life hackers. We’ve had to figure out how to function in society without dying since the beginning of time and one of the ways that I’ve learned to do this always having a go-bag of items in my purse. I keep a little makeup pouch with me that includes an epi-pen, emergency meds, a mask, lysol wipes, hand wipes, lotion, and lipstick or anything else I might need. This method doesn’t just have to apply to my illness though. Every woman should do this. Being prepared is never a bad thing and it can really improve your quality of life. If you put everything into a little makeup pouch, then you can move it between purses too! What does this have to do with health? Everything. By preparing for your life, you are taking care of it. It’s that simple.

9. It is worth the financial investment (but only to an extent):

Investing in yourself is important. If you’re serious about working out and getting more active, you should seriously consider getting a nice sports bra or paying for a subscription service app. But fitness can also be super elitist.I’m a college student that really loves good food. I don’t currently work because of my health and I can’t afford to buy all of the fancy things advertised on Instagram. You really don’t need them, honestly. You can be healthier with what you have available to you or invest in something nice for yourself, but don’t feel pressured to get a full, matching set of working out gear because some chick in your yoga class won’t stop talking about how “a brand changed her life.” You don’t have to buy anything to improve yourself. Nor do you even have to take a yoga class (unless you can afford it/want to).

10. Yes, Skincare Matters.

Skin is a vital organ and taking care of it has a lot more to do with your overall health than you might think. Investing in nice skincare isn’t the vain splurge that some people make it out to be — skincare is a medication. You should have a good moisturizer with sunscreen and body lotion in your everyday life. It’s just like brushing your teeth or combing your hair. When your skin is clean it can make you feel better about yourself and makes you way less uncomfortable. Your skin is also a good indication of what’s going on in the rest of your body. If you’re breaking out in a rash or your skin is super dry, something’s up and you should pay attention to that.