Everyone, I would like to do a quick shoutout to one of Brittany and my followers that I recently reached out to me and shared her story. I would like to share it with everyone, because it made me realize how many petty things I take for granted every singly day. Her story made me want to slow down and appreciate the little things in life, and not get so upset or anxious over petty things. Please read her story – I am including her contact information if anyone would like to get in touch with her. Please leave thoughts and comments below.
Her story….I was always sickly. As an infant my mom said she was constantly taking me to the pediatrician for one reason or another. I had earaches/infections monthly, like clockwork. If someone so much as looked at me funny, it seemed like I ended up with the flu, or bronchitis. If we went to the local shopping mall (which is large!) and someone sneezed on the other side, I was bound to catch whatever it was they had. It was tough. This was way back in the 1980’s. The wider medical community never really heard of some strange disease called Lupus, or Chronic Fatigue Syndrom, Raynauds Phenomenon, and Sjorgen’s was just being discussed in medical journals, though the community really had no real diagnosis as the just why people were getting so sick with it.
By the time I was in grade school my mom had tried everything she could think of. She took me off cow’s milk, put me on goat milk (whey wasn’t readily available back then, neither was soy. And almond milk or coconut milk weren’t even a thought in grocery markets. It was cow’s milk, goat milk, or some powdered milk substitute that was horrendous!) She put me on all sorts of vitamins to try and bolster my weak immune system. Acidophilus, vitamin c and d, strange tinctures from a hippie friend of hers…. Nothing made a difference. Doctors merely explain my symptoms away as me just being a kid who had a lowered immune system and that I’d eventually grow out of it. They never mentioned changing my diet, back then Organic, gluten free, vegan, non GMO was just not something people talked about or heard of.
She accepted what the doctors said and life went on. Around 8 or 9 I joined a swim team. I had tried various other sports prior, from softball to dance, but my body was simply unable to keep up with the tasks of each. But once you got me in the pool it was like magic. I took to it instantly, progressing fast into the intermediate level of our team. I loved it. The swim meets weren’t about trying to kick the other team’s butt. It was really all about beating yourself. Bettering your times. Of course, there was friendly competition between friends, and man, when you were neck in neck with the person beside you, it was a definite motivator! But it really boiled down to beating your own self. I finally felt like I had found a niche. I was healthy, I was toned.
By the time I was 13 though, things started to go downhill. I started having severe pain and swelling in my knees. When I did squats it would sound like a tire rolling over gravel, or Rice Krispies with milk poured over them. I tried for about a year to ignore it, hoping it would go away on its own. I hid it from my mother and step dad, worried I would be spending all my free time in specialist offices and physical therapy. But by 14, I could no longer ignore it. It was affecting my ability to race and do drills with the kick board during practice. I was devastated.
My primary doctor wrote it off as growing pains. Telling my mom and I it would go away as soon as my body stopped growing. He said I’d be fine, and if the pain was too great to take some Advil and wearing a cloth brace during practice. (If you’ve never swam with a brace before, don’t! It is awful!) But within a few months my knees were swelling so much they looked like cantaloupe. I went to specialists, several even, all saying the same thing, until one finally gave a new diagnosis. Chrondomalacia patellae (or CMP). Essentially, he explained, the underside of my kneecap was irritated and the cartilage that typically glides along with no effort was inflamed and causing the pain. He reconfirmed the diagnosis again several weeks later after an MRI and x-rays. My treatment was cortisone shots below the kneecap to relive the swelling and irritation, and physical therapy.
I went to two rounds of the shots. About a month apart. Each time I left I was rendered immobile. Not only were those shots painful, but they made the condition worse. I stuck with the physical therapy for about a year…again, no results. The specialist basically threw his hands up with no clue what was wrong with me, and sent me on my way.
By 17 my swimming was over. I had come so close to being Olympic caliber. I was within a year of being trained at the training center for Olympic Athletes in Colorado. But, I had to simply walk away. By this point the pain and swelling had now moved into my shoulders, making it virtually impossible to train at the same level I was when I was 16. It was a crushing blow. My whole life seemed to be crumbling. I had issues with my step dad, I was depressed, I had just broken up with my boyfriend of 2 years (seriously, in teenager years that’s a lifetime!). I honestly felt like everything and everyone was against me.
-I’m gonna break here in my timeline because from 18 to late 20’s is really a novel on the personal level. I will say that my health steadily declined. But from 18 on to 21 I went through A LOT. And much of it, while it was hardship and adversity that I overcame, it is not something I readily discuss because I don’t ever want to come across as glorifying it or someone I’m not. Yes, there were drugs involved. Yes, I did some REALLY stupid things. But I don’t regret any of those moments, as each and every one of them have built me into the person I am now. By 22 I was back on track, working, a productive member of society, clean and sober for a year at that point. I got married at 23, still able to work, still able to remain somewhat active, but exercise was the furthest thing down on my priority list.-
After I had to give up swimming I just didn’t care anymore. By 24 I gave birth to my daughter, Genevieve, while my husband was in Iraq with the military. During my pregnancy with her I developed weird symptoms. I had vertigo at random intervals, and so bad I couldn’t trust myself to drive, or even walk sometimes. My feet and fingers would turn sickly shades of blue for no reason. And I was constantly exhausted, to the point it was debilitating.
By this point, due to becoming so inactive and disabled, I packed on the weight during my pregnancy. Around 40 pounds in total. And it never came off. By the time Genevieve was 5 my marriage was ending. I fought to keep it, but more out of fear of the unknown than anything else. I hadn’t been able to work in a couple of years, I was terrified of what would become of my daughter and I. But it ended none the less. It was so abrupt and sudden. It was like my husband had snapped inside, switching from the guy I married, to some monster attacking me in front of our kid.
During the same time my step dad passed away suddenly. We had just begun rebuilding our relationship. He had divorced my mom years prior, and seemed to be finding some inner peace and changing for the better. When he passed it shook the very foundation of my entire world. It was sudden, no warning, no clues. Just one morning, he was dead. I think the culmination of stress from my deteriorating marriage (and subsequent ending of it) combined with the sudden death of my dad really triggered the Lupus. Prior to these events I just had weird symptoms that popped up here and there, causing havoc in my life. But after these events my health nosedived.
Genevieve and I moved in with my mom, into the single bedroom she had available. Even today, 3 years after all of this, we still share my bed in the tiny little room. Living in such close quarters I really began to notice the issues my own daughter was having. We knew she likely had ADHD due to family history on her father’s side. But we had no idea just how serious her own issues were. I attributed her delays in school and development to the issues she was seeing me deal with at home. At this point I was constantly stuck in bed, in far too much pain and inflammation to so much as walk to the kitchen. I couldn’t wash my own hair for weeks. In the first few months of living with my mom, I can recall maybe 2 days where I was able to leave the house to take care of things. The rest of that time I was stuck, in bed.
Back then I had no idea I was going through my first full blown flair up. I just knew it hurt. Everything, my joints, my skin, even my hair and finger nails. It all just hurt. When I was finally able to move around without assistance I went to see my family doctor. I had found him a couple of years prior to all of this, and he initially was Genevieve’s pediatrician. I loved his spirit though. He took the time to listen, he worked with me on health care management rather than dictate to me what I was going to do like a child. And when I saw him after that first flair up, and explained to him how bad it was, he didn’t roll his eyes at me, automatically thinking I was fishing for narcotics like SO MANY other doctors had done before.
I didn’t think anything of the tests as I left the lab that day. I walked out after giving several vials of blood and a urine specimen and carried on as I normally would. I figured they’d all be inconclusive like all the others over the years. So when I got a call from my doctor just two days later, I was startled to see his number on my caller ID. The second I heard his voice I knew something was wrong. I was driving at the time with my mom and daughter. I can remember clear as day where we were, what we had been doing. “Uh yea, Rachel….” My heart just thudded as I heard him talk, his voice somber and quiet. “Your tests came back with a positive ANA. The levels are quite high in fact.” I had to pull over at this point. A year prior to this I had begun prerequisites to med school (I’m still currently premed) and knew full well what ANA levels indicated. But didn’t understand what it meant for me personally. After a long pause of just silence he continued. “I think you have Lupus SLE based on these results and your symptoms.” Prior to him saying this I had never heard of lupus. I knew about autoimmune diseases, but not in depth, not what they do to people, or what causes them. Heck, I didn’t even know there were multiple kinds of lupus!
I hung up the phone and got back on the road to go home. My mom questioned me what was said. But really, all I wanted to do was crawl into my bed and cry. I had no idea what was going on, and yet it felt like a death sentence at the time.
That night, I took a break from homework and began to research just what it was that my body was battling. I was horrified to read that my body was attacking itself. Who wants to read that you are essentially allergic to you? I looked at website after website, article after article, absorbing the full picture of just what is was I was dealing with. I can remember sitting and reading Wikipedia’s page for Lupus SLE, and ticking off the symptoms I had over the last year.
Hair loss? Check.
Malar Rash? Check.
Extreme Fatigue? Check.
Extreme Joint Pain? Double check!
Frequent Kidney Infections and/or failure? Check.
Mood Swings? Most definitely.
I was floored. This was the first time I had been giving a diagnosis where the symptoms matched what I was going through. But the more I read, the more my hear t sank. Words like “no known cause” and “most fatal type” popped out at me. That first night, and the following next few days were a blur. I cycled between tears and mourning my previous self, to resolving to just fight it. I thought, if I fought hard enough, if I was determined enough, I could make this go away. I’m strong! Screw what the researchers and specialists say! They’re wrong, I CAN get rid of this crap.
And then….reality sets in.
-What feelings did you have when diagnosed? What exactly is your disease
For a more detailed look at what Lupus SLE (and other types of lupus) is, please visit http://www.lupus.org
When I was first diagnosed with lupus it felt like I had my death certificate signed. It was a given, I was going to die. Sounds so silly now, especially just reading it. We ALL die. But I felt like this disease was going to take me far earlier than I would be ready for.
-How is Life with lupus:
For about 6 months I really just sat and hated the hand I was dealt. I couldn’t believe this was happening to me. After all the changes I had made for the better in my life. And now I am told I have a shorter expiration date than most. I really questioned why God would do this to me. How could He take my dad, let my marriage break apart and turn my husband into some monster. How could He do all that, then give me this disease? Didn’t I deserve a break? I really hit a wall emotionally, spiritually, and physically.
And then something happened. My daughter, previously diagnosed with ADHD and OCD, began to see a new therapist. And we really got to the nuts and bolts of her issues. My awareness of her challenges heightened and I focused much more on what was REALLY going on with her. We did some additional testing and soon found out she had autism and an undiagnosed (currently) mental disability involving her gross and fine motor skills as well as ability to communicate. She doesn’t have it easy. And yet she perseveres. She smiles, and laughs, and enjoys what life has to offer, no matter the scale of it. She takes advantage of her good days and really lives in them. And when she had bad days, she shakes them off, goes to bed that night telling me and the rest of the world that tomorrow WILL be a better day.
How could I not re-evaluated myself and my own issues when I watched her keep pushing? Here I was, at a spot in my life where I really got why people chose assisted suicide. I was to a point where I was begging my specialist for chemo and silently telling myself if the chemo doesn’t work then I’m offing myself. I was sick and tired of being such an emotional, mental, and financial burden on my mom. I wish disgusted with the fact I couldn’t take a more active role in parenting my daughter. And then that happened. I could feel something was going to change soon.
And it did. I started to research foods. More so for the benefit of Genevieve than my own self. But the deeper I dug, the more I found that related not to just her and her autism, but also to me with my lupus. By this point I was basically living on eating yoghurt and the occasional banana or bowl of ice cream. Regular solid foods left me doubled over in intense pain or in the ER sicker than sick.
About a month into my research I was in bed, dealing with another flair up again, and spending my days having marathon Netflix sessions. And I happened across a movie by Joe Cross called Fat, Sick, and Nearly Dead. It was like a light bulb when off. I resolved to buy a juicer as soon as my fall quarter financial aid came in. I told my mom what I was planning to do, and invited her to join me. The majority of the food in the house comes from my food stamps. I told her if she wanted anything outside of the foods I was buying she would have to buy it herself. But I was cutting out all the processed foods, all the conventionally grown fruits and veggies, and for myself, all the meat and dairy. She thought I was crazy when I told her I was going to do a 2 week cleanse of nothing but juice. I don’t think she thought I was serious, honestly. But I had to do something for myself, and for Genevieve.
A couple weeks passed and fall quarter came along with financial aid. This is money I typically never see except for the start of new quarters in college. I’ve been too sick to work for 5 years now. But the first thing I did was buy the juicer. And soon after I filled the kitchen with clean foods. I went through the cupboards and pantry, tossing out anything I couldn’t pronounce all the ingredients to, then anything with an expiration date longer than 3 months. My mom, who is morbidly obese and has been for decades, joined me that same day. She elected to juice for breakfast and lunch, and eat a solid dinner. Genevieve, already mindful of what she ate to an extreme was thrilled to see all the healthy food. (She still gets excited by it.)
This was two months ago. In just the first 3 weeks of juicing, eating primarily vegetarian, my pain levels dropped significantly. The swelling went down to a point it’s nearly gone. I was able to lower my dosage of meds by 75%. 75%!!!! This is still shocking to me. By 4 weeks out I began to exercise. Light work at first, walking, some easy yoga, resistance bands. And by 5 weeks out I was burning through my ballet class and mapping out weight training and HIIT sessions in my college fitness center. It was also during this time I found the Instagram fitcommunity. I stumbled on a couple really inspirational folks. @robbsanity and his fiancé @chelseabush, @training_fitness_guy, and @chaudsjuicetherapy were some of the first that really supported me and welcomed me into the fold. And I just followed more as I found them. I honestly don’t think I would have been strong enough to keep going down this current path if it had not been for the support from the first few I followed. It wasn’t easy to give up ice cream or gummy bears. But after a month…the cravings subsided, I felt all the better for it, and I had found some incredible people who genuinely wanted to see me succeed and were willing to take moments out of their busy days to offer me words of encouragement.
I’ve had one flair up happen since the changes. But instead of lasting weeks, I was only stuck in bed for 3 days total, and STILL able to wash my own hair and move around the house (just painfully). I presently juice for breakfast and lunch, but I eat solid tiny meals in between those, as well as have a solid dinner (also small). I eat around 7 times a day, about 90% vegan, 100% pescaterian (eating only fish as meat.) I work out 5 days a week.
-How has working out impacted your situation?
Working out is special to me. It’s my time to focus on me. Getting my body back to fit. When I go to ballet class I get to express myself through beautiful movement. The icing on the cake is I get to burn boatloads of calories while doing it. When I go pound the weights in the weight room, and I have my ipod blasting great music I feel so powerful. And with each gain I make I gain that much more confidence back in myself and my body. And now days, my endurance has improved so much I can jog. Just my feet hitting the pavement or trail rhythmically, in time to the music in my headphones, and I can just commune with myself, God, the world around me. I go out for a jog tense with stress and issues. And I come back clear minded and relaxed. Someday soon, I’d love to get into Crossfit. Still not stable enough healthwise to work, so until then, it’s a major goal and dream.
-How has dieting/clean eating impacted your situation?
I don’t diet. I changed my lifestyle. We didn’t eat horribly by most standards. We had fruits, veggies, mostly lean meats. But I lived for gummy bears and nightly bowls of ice cream. And we’d do fast food any time we were out and hungry. It was easy, it was there. But it wasn’t helping my daughter, or myself. So we changed it.
Now it’s all clean, all the time. We pack up lunches if we know we’ll be gone for a longer period of time. We bring health snacks everywhere. We make sure we are eating the right balance of nutrients to support ourselves. If it wasn’t for changing to clean eating, I’d be just as sick as before, if not worse. I’d be depressed. I’d be 70lbs heavier than I am now too. Clean eating has saved not only my own life, but my mom and daughter’s as well.
-How have WE/your fit fam impacted your situation?
When I come across people in the fitness community who are generous not only of their tips and tricks for fitness and healthy eating, but also with their personal struggles, I admire them so much more. It’s easy to post inspirational images, and swap recipes that work for you in the kitchen. But it’s not at all easy to become vulnerable and share your own personal struggles. But taking it that next step is what saves lives. It makes you more human, more approachable, and easier to relate to. Speaking as someone who went from fit to fat, and no heading back to fit again, it’s SO hard to take that step and approach the healthy, fit people when you are tugging on the hem of your shirt trying to hide your muffin top. It’s so easy to just feel ashamed by the cellulite, or tiger strips on your hips or belly, and run right out of the gym, or like the post on instagram but never speak up and ask questions or leave comments.
When a person in the fitness community cracks that façade of iron will and powerhouse strength, and shows that they too have moments of weakness, or they too struggle with something like maintaining their clean eating, then that guy or girl hanging out in the back, or lurking on someone’s IG feed, feels that much more safer and able to speak up. It’s always that first step that’s the hardest. For me, it was seeing @robbsanity post his before and after side by side. It floored me. Here was this guy who went from big dude, to cut and stacked dude. Seeing that this regular guy who has an Adonis body used to deal with morbid obesity himself, gave me that tiny bit of confidence I needed to start speaking up.
What Brittany did recently with her own post about her recent challenge with food has likely saved a few people. You read through the comments people have left, and are STILL leaving, that single blog post has resonated with so many people. And that’s just within the fit community!
-Will you continue trying to live a fit lifestyle?
Changing to fit saved my life. So continuing to live a fit and healthy lifestyle is a no brainer to me. I’m not unrealistic though. I anticipate mistakes and flub ups here and there. I know there is no such thing as perfection in any of us. But as long as I continue to make it a priority, I am proud of myself.
-What motivational/inspirational words do you have for others who are going through hardships?
Don’t stop. The first few steps into being fit are the hardest, the shakiest, and the scariest. You don’t feel sure of yourself. And you may even feel ashamed of where you are on that first step. But it does get easier. And you do get stronger.
Set attainable goals. Make small goals that lead up to bigger ones. IF you set your goals to unreachable heights with no in between your only setting yourself up for disappointment.
I think the biggest thing here though, is to speak up. It’s so hard to do, I know. I’ve been there. And I still have days where I feel myself wanting to shrink back. But that moment you reach out to someone in the fitness community, you have a lifeline. Never be afraid to ask questions. Don’t be afraid to ask for motivation, or support, or even someone to tell you to put that cookie back down. There will always be someone (especially on Instagram!) who will respond and give you that boost you need.
Don’t be afraid of failure. We’re all human, we all make mistakes. The difference between people who succeed and those who never do, is they get back up and try it again.
Thank you so much to Rachel for sharing her story with us! Please feel free to contact her with any thoughts, comments, inspirational words, more info, etc.