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Lyfestories: Jen Hodson’s Journey with Breast Cancer

When I was diagnosed with breast cancer, the scariest word in the room was “chemotherapy”.  Naïve to what active treatment would actually be like, I foolishly assumed that once I completed it, I would be on to a whole new adventure.  Wow, was I wrong. I finished big chemo in April 2017 (coming up on one year!) and my Herceptin infusions in December 2017. I’ve been out of active treatment for three months and things have never been scarier.

It wasn’t chemotherapy I should have been fearful of, I should have balked at “post treatment” instead. With chemo and targeted therapy, I was actively doing something against cancer, and now I’m simply existing.  Or that’s how it feels. My follow-up appointments are dwindling, my side effects are plateauing, my survivorship care plan has been queued up. So why am I feeling so utterly depressed instead of ecstatic?!

Turns out, this is more common than I thought.  After discussing with several others I’ve met online or in support groups, they all agreed that “post cancer” life can be quite brutal on the mind.  Not only for the aforementioned reasons, but because we’re left with the fallout from the fight. We’re putting together pieces we didn’t realize had broken. Depression, anxiety, PTSD, lifestyle changes, relationship changes, returning to “normalcy”, being sick but not looking sick, these are just some of the aspects of my life that came rushing to greet me as I closed the door on active treatment.

And I was not prepared to greet them.  Perhaps I’m still not, but I’m learning everyday how to equip myself with the tools to make it through this challenging time.  I’ve started to carve out 10 minutes everyday to sit and reflect, or to meditate, so that I can turn everything off and see what surprising thoughts come creeping out of the woodwork.  After more than a year of cancer running the show, I’ve learned that I still desperately want to learn sign language. Now I have a new goal to focus on. No seriously, I got that from sitting on my bed and listening to my Headspace app for 10 minutes.  It works wonders.

I’ve started to run again, and I even have a few races under my belt.  I’ve signed up for the Chicago Marathon in October 2018 and each day I can push my body and lungs to the limit, is a day I am thankful for. It’s an outlet for all the things I can’t control, I am quite literally running away from them.  And on the days that are the darkest, I’ll try and stroll around the park for a few minutes, just to be outside. A change of scenery always seems to help.

Most importantly however, I’ve started seeing a therapist.  This is the most important tool I’ve found during this tumultuous period.  There is so much to take in after treatment, there are so many questions that float around my head daily.  Should I become a vegan? How can I prevent a recurrence? Why do I feel guilty about surviving? About having fun? Journaling and reporting to my therapist keeps me grounded.  And it allows me an outlet to explore this new phase with a safety net. I’m happy to have it.

If you’re reading this, and find yourself in the same position, please reach out to your medical team for help.  I was surprised by the resources they provided me when I admitted that I was struggling. And if you’d like to chat more with me about it, you can find me on Instagram @jenhods or at my website www.rogueboob.com (if you’re not in the same position, that is amazing, but I hope you’ll still come say hi).  For everyone on this journey, just remember to put one foot in front of the other.

 

Lyfestories: Incorporating Exercise Your Life with an Invisible Illness

Hi, I’m Zoe and I am actively autoimmune!

When I was diagnosed with lupus, I felt like I had lost control of my health and body. As a physiotherapist, I have always believed that movement is key and began to use exercise as a way to take back some control. Whatever the illness, injury or challenge, I believe exercise will support our health and recovery.

In saying that, I know how difficult it can be to motivate yourself to be active. Pain and fatigue, alongside juggling work, family or school plus hospital appointments and medication regimes; exercise can just seem unachievable. Health can fluctuate on a daily basis preventing consistency and progress. Here are my top 5 tips into how I incorporate exercise into my life with a chronic illness:

 

  1. Be kind to yourself!

Sounds simple, but I find adopting the right mentality about why I am exercising, helps to motivate me. A lot of social media is aimed at fit and healthy people, striving for excellence. With chronic illness, we are striving for different goals.

You are not exercising to punish your body. You are not a bad person if you miss a workout. And you should not feel guilty if you cannot keep up with what others either on social media or in the gym are doing. Find what feels good for you and be kind to yourself.

2. Set realistic goals

Find a balance between something realistic but challenging, and something you care about or enjoy doing. Our bodies cope with enough medically, so we don’t want to add to the stress it goes through!

I find comparing where I am and what I want to achieve is very different to the average #goals on Instagram. Realistically running 5k and doing 50 burpees are not possible at the moment. But to aim to get on my mat 5 times a week, whether for a gentle workout, stretch or yoga is attainable and helps motivate me.

 

3. Be flexible

“Be stubborn with your goals, but flexible how you get there”

Health is unpredictable (the number of days I wake up with my list to do and due to how I feel, I achieve zero of them). Add in spontaneous hospital trips and appointments and it can feel disheartening not achieving what you set out to do that day. I try to use these moments to mix up my routines, walk instead of run, stretch instead of workout or on really bad flare days, simply sitting and doing some breathing exercises. Frustrating as it can be, it is about listening to what your body needs.

4. Learn when to rest and when to progress

Lots of my clients used to ask me:

“If I feel unwell should I still exercise?”
“Do I stop if I have pain?”
“Should I keep pushing past fatigue?”

For those of us with invisible illness, if we listened to our bodies every time they were unwell, in pain, or fatigued we would never exercise. That being said, we can be too brave and push past symptoms we should pay attention to. It is a really difficult balance and often ever changing due to drug changes and disease activity.

The best way to find out your limits is to test them! I started very lightly and monitored how I feel during, immediately after and the next day. A gradual increase in activity is a lot wiser than getting stuck in a pattern of over exerting yourself and then needing days to recover.

 

5. How to push through

Everyone has bad days, either physically with raging symptoms, or mentally due to a lack of motivation or simply fed up. It is absolutely okay to have these days off! However, it is often on these days when I am feeling rubbish, getting on my yoga mat can have the biggest positive effect.

Sometimes it is the thought of exercising that can seem overwhelming more so than the workout itself. The process of getting in my activewear and getting out my mat can sometimes seem a big a task as washing my hair aka. huge. One method I use is to break down the task so it seems more manageable. I give myself a target of 5 minutes. If after 5 minutes, my symptoms are still horrible or worse, then I stop but more often than not, I carry on.

 

I hope a few of my tips helped, for more guidance or if you have any questions please reach out to me on @activelyautoimmune or on www.activelyautoimmune.com

Lyfestories: Learning to Love Yourself, Despite IBD

 

 

 

I started experiencing my first symptoms about a year out of school. I’ve always been a perfectionist and an over-achiever, and I suffer from an extreme fear of missing out, so I was really frustrated when I started experiencing what I thought was just persistent and unrelenting gastro. I was in my second year of University and had just started dating my first serious boyfriend. I was insecure and shy and didn’t want to draw attention to the fact I had bathroom issues, let alone used the bathroom for anything other than a wee in the first place (because I’m a girl and god-forbid we poo) so I didn’t tell anyone what I was experiencing and covered my dramatic weight loss with a lie that I was shredding for summer.

It wasn’t until I went on an annual family skiing trip to New Zealand that my parents witnessed the extent of my diarrhoea and my mum urged me to see the doctor. Assuming it was just a tummy bug my doctor prescribed me an antibiotic. Well, 3 courses of antibiotics later and the diarrhoea was still just as bad, if not worse than when I first started them. I was too self-conscious to go back to say they hadn’t worked for a 4th time so I ignored my symptoms for a further few months. It was only when I started seeing masses of blood in every bowel motion that I went back to tell my doctor.

……And just like that, I went from a carefree 19 year old with the world at her feet to a walking pharmacy forever fighting her own body.

I woke up from my very first colonoscopy and was diagnosed with Ulcerative Colitis in April 2012. I remember feeling completely overwhelmed, isolated and helpless. I’d never even heard of Ulcerative Colitis before and here I was being told how I’d never live a normal life again.

Massive doses of prednisone and chemo drugs managed to mask my symptoms for a good few years and I was able to return to some sort of normality until November 2014 when my health rapidly declined again and I began a 2 year long colitis flare.

You can run away from a bad situation but you can’t run away from a bad body, you have to stay and fight it. So that’s what I did. I stopped studying and dedicated 2 years of my life to healing myself. I tried everything from steroids and biologics to faecal transplantation, medical marijuana and cabbage juice, but every day I woke up I was sicker than the day before.

I’d love to stay I remained optimistic despite everything, but the truth is I didn’t at all. I had bad days. Really bad days. Days when I’d just sit on the bathroom floor with blood and stool running down my legs because I hadn’t made it to the toilet in time and cry hysterically at the life I’d be dealt. What I learned was that if you just change your mindset everything bad doesn’t seem so terrible. I found comfort in thinking that either way these diseases are rationed out by the Universe and someone out there was bound to get it, so in a sense I’m saving someone else from having it – almost like I’m doing a stranger a favor.

In September 2016 I had my first near death hospital admission where I was so malnourished that my body had started eating away at it’s own muscle and tissues for energy. I had my next stroke of death two months later when unbeknown to me my body had stopped producing it’s own hemoglobin and I was rushed to hospital for blood transfusions. At this stage I had exhausted all my options in both Western and alternative treatments and surgery became my only option. However, I’m incredibly stubborn and was completely opposed to having an ostomy bag. I remember saying I’d rather die than have surgery. But in December of 2016 I was actually faced with that decision….obviously I chose the latter. One year later I underwent my second surgery to create a j-pouch: an internal pouch with my small intestines. Now all I have to show for what I’ve been through are 10 very little scars on my tummy.

I always thought losing a part of me would make me lose who I am as a whole, but I’m actually more myself now than I ever was with my large intestine. I’ve learned to stress less about the little things, love myself as I am right now and always search for the positives, because almost every situation has them. Having IBD has shaped my life in weird and wonderful ways and even if I had the chance I’d never change what I’ve been through because it’s made me who I am today.

Lyfestories: Jessica Proto’s Breast Cancer Journey

It was the spring of 2017, around March. I was lying in my bed thinking that it had been a while since I did my last breast self-examination. I started to check my left breast and I could quickly feel a small lump there. I checked both breasts and under my arms, no lumps any other places. I asked my boyfriend to check if he could feel it, and he did. I immediately went online and googled “lump in breast”, which led me to several places that explained that a tumor would be hard and very firm, and not easy to move. Since my lump didn’t have those characteristics, I thought that probably it was just a fat cyst, so I waited another month before I checked it again. The second time I checked it I could still feel it; it had the same size, but just to be sure I wanted my doctor to feel it. He sent me to a clinic to take some tests of it. Unfortunately the results came back positive. Me, a 27-year-old girl, had breast cancer.

I think I was in shock at first. I managed to tell my mum that I had some cell alterations, while I told my sister and my brother that I had cancer. Because of my age they wanted me to take another test, just to make sure that it actually was cancer. The second time I got the answer to my result it was easier for me to tell my family and friends that it was, in fact, cancer. I always thought that cancer was something I probably would get when I got old, and it’s still weird for me to think about it.

My lump was small and I started off with surgery the 18th of august 2017. They removed the lump, analyzed it and the tissue around it and found two more tiny lumps. I had to have another surgery to make sure they removed everything, and then started chemotherapy in November. I consider chemo to be my toughest friend. One of those friends that constantly tells you the truth because they want what’s best for you, even if it hurts you a little bit. Chemo hurts my cells, makes my body ache and tired, but it is for my very best. My treatment journey is not over yet, I’ve still got a few months left, and then I can look back at this as a hard chapter of my life.

I am one of the lucky ones and that is why I’ve always tried to stay positive. I know that I’m surviving this so I usually don’t feel that I have any reason to be sad. I do have a bad day now and then, tired of the whole thing and just want to get back to my “normal” life. I miss my long hair and I don’t feel very feminine anymore. But, my hair will grow back, and I will get my “normal” life back. I also found it soothing to share my story with others. It makes me so happy if I can manage to change just one person’s life. I also would like women to open up their eyes and be more aware of this illness. I know a lot of women who started to check themselves at home after finding out about me. I do it every two-three months, and that is why I’m lucky to survive this. My message to you out there, men and women, is: If you are afraid something is wrong or you are not sure how to do a self-examination and need help, call your doctor. It could really save your life like it did to me.

Keep smiling, and stay positive. Life is good.

Lyfestories: IBD Fitness

I was diagnosed with ulcerative colitis back in 2008-2009. I’ve had this condition for almost 9 years now. Just like everyone who suffers with this disease, I felt like there was nobody to talk to. I felt incredibly embarrassed and isolated.

I had several tests but never got any positive diagnosis. Doctors would tell me, “it’s nothing, it’ll pass”, but my initial symptoms of diarrhea got worse to the point of passing blood.
Not being able to get out of bed or eat was the low point. I became depressed and anxious that nothing would change and there was no one who could tell me what was wrong. Eventually I saw a specialist who diagnosed me with ulcerative colitis
I started my long journey on prednisolone and other drugs. I now take cyclosporin and Azathioprine and haven’t looked back. Things are on the up, but everyday can present a new challenge.
A year ago I decided that I wanted to raise awareness about my condition and created a blog and Instagram account dedicated to IBD related diseases, to show people “this disease will not define you”. I started to get a few followers and likes and I was then asked to talk about my story to an amazing group called instachrons. Recently I gave a talk to a crowd about my story, something I never imagined would happen. I realized people want to know about my life and my condition and how I’ve overcome adversity and this crippling disease.
I was then asked to work for a gym clothing company, because they loved the fact that there are no excuses to achieving what you want in life. You can do it too. Just set out goals and stick to them even if it’s getting out of bed. Small wins are key to big success.
I primarily wanted to create an account about fitness and diet as the lowest point of my condition was not being able to eat or walk due to the pain I had suffered. I get out there and push myself because I know it can all change. I also cook loads of food–  which might inspire you too.
For me this is just the beginning and I want to continue to raise awareness for IBD and to one day help find a cure
I’m promoting the fact that I want people to love the skin they are in and to love this condition.
I’ve created a fitness app, and have been working hard on my fitness. I have been asked to work with companies and fitness brands, showing  it doesn’t matter what your background is, you can do it. Having a chronic disease  makes me unique and gives me a chance to change the world– and this is exactly what I plan on doing.

Lyfestories: Jon Tijerina– Outsmarting His Diabetes

3 years ago, my persistent nerdiness brought me from Texas out to sunny California to study at Stanford School of Medicine. I was surprised to find incredible research and developments not only at the medical school, but in the overwhelmingly supportive and innovative diabetic community!

After years of feeling like I had to go it alone, in and out of diabetic burn-out and meal-time anxiety, I finally found the encouragement and positivity I needed to refresh my mindset and management.

Diabetes has been part of my life for as long as I can remember. I’ve seen the full gamut of treatments, from my grandmother explaining that her “medicines” came from cows, to my father’s diagnosis and all the finger-pricking, pill-swallowing, and (eventual) groan-inducing injections that followed. There had to be a better way.

13 years ago, I was diagnosed with Type 1 Diabetes after a family trip to Guatemala (which I mostly spoiled with my constant trips to the bathroom and incessant napping). Thinking I had to resign myself to pinching together the little fat I had to inject the rest of my life, I was all-in when offered the chance for an insulin pump and CGM in college.

The technologies weren’t exactly a silver bullet (big shout out to CGM alarms for sleep loss), but they instantly made running collegiate track and maintaining my glucose during times of stress (i.e. college finals) more manageable.

I never expected that 5 years after going on a pump system, I would be “jailbreaking” my own insulin pump to receive instructions from an incredible (but NOT FDA-approved) app called Loop. But here we are!

After a lot of research, a lot of discussion with my endocrinologist, and a lotttt of CGM sharing with my mom (mistake), girlfriend and basically anyone who would be ok with getting annoying alarms for me, I decided to download this software that allows an algorithm on your phone to send temp basals to your insulin pump…. all by itself… every 5 minutes!

The Loop system takes your CGM readings, insulin-on-board, and carbohydrates-eaten into account when making its calculations and can even predict when you’ve miscalculated your carb intake and make an automatic correction! This functions similarly to the FDA-approved Medtronic 670G hybrid closed-loop system (the only FDA-approved closed-loop to date) that has recently become available, although it allows you to choose which CGM you prefer and is highly configurable. Again, Loop is NOT FDA-approved (see below for disclaimer).

3 weeks after beginning my journey with this closed-loop system, I have to reiterate nothing is a silver bullet for diabetes management. The system requires some computer and programming competency, and like any computer program can have malfunctions. Electronics and connectivity come with their own troubleshooting, but I couldn’t be happier with how this system has drastically reduced my mental workload (and the sleep!).

After a lifetime being surrounded by diabetes management, I feel incredibly lucky to be riding the next wave in treatment. A huge and profound thank you to the diabetes community for coming together around issues in our treatment, and solving the problems we know need to be addressed now!

*The opinions expressed in this blog do not reflect professional treatment recommendations, the opinions of Stanford University, Stanford School of Medicine, or Stanford Hospital and Clinics. Any changes to diabetes management regimes should be discussed with the patient’s endocrinologist or primary care doctor. Any persons adopting a non-FDA-approved system of treatment do so at their own risk and should proceed with appropriate caution.

Jonathan Tijerina is a 3rd year medical student and research coordinator at Stanford School of Medicine. He teaches the med school course, Diabetes 101 for Healthcare Providers, and started the Bay Area Running Group for diabetic teens learning to manage their glucose on long running ventures. IG: Jonathan_David_Tijerina

 

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