u/dasbrutalz

Hello Everyone,

First off, shout out to the Mod team. I originally posted a version of this and it was removed. I was kind of pissed, and reached out to them without a cool head. That was a mistake. Eventually we were able to have a constructive discussion and some feedback was provided that gave me insight to some points that required some clarity and/or disclaimers attached to them. I appreciate them allowing me to come back from a conversation that originally started out as rude on my part to reach a middle ground of understanding. I’m human, I make mistakes. I’m also passionate about this topic, because like all of you, one day my life became forever altered by this disease and it became something I had to focus on a lot.

Second: I am not a doctor, I am not selling you anything, and I am not telling you how to manage your personal battle with Lupus. Consult your doctor about lifestyle choices, supplements, modifications to medication, or any other attempt to remedy symptoms and troubles encountered with Lupus. I’ll add additional disclaimers to specific items as well, but please understand I’m offering a personal story that is unique to me and my circumstances. My only main hope is to provide, well, hope, that a “normal” life is possible. Do I have a fool proof guarantee of that? No. All I have is my story, and that’s my story alone.

I read a lot of posts of despair, and I feel for every one of you. This post is to hopefully offer a different perspective, one of hope. Our mental state has a massive impact on our physical health, so my prayer is that this post might help at least one person find some positivity and potentially drive them to a life that doesn’t feel ruined by this disease. This is my story, I know yours may be different, but it doesn’t mean your story is over and can’t be rewritten. I’m not here to flaunt my success, and I’m definitely not here to tell you you’re doing anything wrong. This is simply a happy story that may offer some help or ideas on how to feel better.

A little over a decade ago, I was not well. Every joint felt like it had been hit with a sledgehammer, rashes all over my body, hair falling out in clumps, and even hospitalized with internal bleeding from a <5000 blood platelet count that required a transfusion. Steroids, this drug, that drug, and an immense amount of frustration and pure despair. I was in my mid 20’s, just got married, and I felt my life was over. I remember telling my wife “if this is how I feel at 25, I don’t know if I can handle the rest of my life”. After a couple years of regular blood work, a rheumatologist finally identified and diagnosed me with SLE. Initially, I was devastated. It was nice to have an answer, but the answer sucked. I went through a couple months of different drugs and getting some super gnarly side effects. I refused the biologics and methotrexate because of wanting to have kids and my own personal preferences when it comes to pharmaceuticals. I eventually wound up on Imuran, which seemed to help. We slowly ramped my dose up to 200mg per day, but it didn’t really bring me that ultimate relief. On top of the physical effects I felt, I was not well mentally. It’s hard feeling like you’re just starting your adult life and feeling like you have an anchor strapped to your leg.

Note of clarification: Imuran did help. One of the reasons I couldn’t take certain medications was their negative impact on psoriasis and psoriatic arthritis. I also intended to have children, so drugs that impacted that were off the table (and agreed to by my rheumatologist). Taking Imuran allowed my body to get to a point where my lifestyle choices could be made to make me feel even better and return to a quality of life reminiscent of my life pre-diagnosis.

Now, in my late 30’s, I live my life without anyone knowing about my diagnosis. I’m only taking 25mg of Imuran, and I’ll be attempting to go off meds completely this year with monitoring from my doctor. I play with my children every day, I lift weights and exercise almost daily, ride dirt bikes, camp, fish, hunt, coach my sons baseball team, and I work a job where I’m on my feet outside nearly every day. If I’m not at work, I’m probably outside, and you can assume that every day I’m living an extremely active day. Are there days where I’m absolutely smoked by the end of it? Of course. Do I go to bed a little more stiff and sore than the average Joe? Probably. But all in all, my biggest reminder of lupus is taking my half a pill at night before bed.

Note of clarification: my rheumatologist disagrees with my choice to completely end my medication. She has acknowledged that my blood tests show I am in great physical condition, my disease is clearly in remission, and I seem to be living a very healthy and happy life. Her stance is she’d rather have me on a small dose of something as opposed to nothing. Her concern is that by coming off meds completely, the risk of a flare up increases. I am aware of the risks and make my decision knowing that I could be putting myself into harms way. I’ll be doing it with close monitoring by my rheumatologist with the understanding that if things change for the worse, action will need to be taken. I am not telling you to not take your meds, this is just a personal goal of mine. I’m stubborn like that, I personally want to be free of medications, and that’s my own personal thing. Do not make changes to your treatment plan without consulting and advising your doctor. Listen to them and work with them. It’s not something every person can achieve, let your rheumatologist guide you when needed.

What helped me get here?

1.) Diet: it’s a known fact that processed foods, sugar, artificial sweeteners, etc cause an inflammatory response in our bodies. I did away with all of it. Traded soda for water, all organic foods, and whole foods without junk and fillers in them. When I made this change, I felt a noticeable difference. To the point where now, if I eat a bunch of junk food and drink a soda, my body hurts and aches. I know it may sound silly, but our bodies are extremely fine tuned machines, we must take care of them.

Disclaimer: I’m not saying this will fix your problems and put you in remission, however, healthy food helps you be healthier. Put every tool you can in your toolbox.

Medical study on processed foods and the impact on inflammation/inflammatory responses

2.) Exercise: a body in motion stays in motion, and a healthy body physically helps it get healthy everywhere else. Am I saying head straight to the squat rack? Only if you feel up to it. The point is you need to be moving and taking care of yourself. It sucks sometimes, but trust me on this, eventually you feel less tired, less sore, and you’ll notice the difference when you fall into a slump of not working out.

Disclaimer: again, work within your own limits and consult your doctor. If you don’t live an active life, start small and work with someone who knows more about fitness. They can guide you and help you to not hurt yourself. Working out small regularly is better than hurting yourself by going too big too quick.

Information on the impact of exercise and physical fitness on autoimmune disease

3.) Mental health: this one is tough, because everyone is facing a different challenge mentally. For me, stress and frustration has a physical impact on me. Eating healthy, living healthy, and doing things you love to do helps my mental state. I’ve also become devout in my religious beliefs, and through the grace of God and his son Jesus Christ, I have found a contentment and happiness that nothing else can provide. The spiritual nourishment is more important than the physical for me. This post isn’t meant to be evangelical, but it’s part of my story and the most important part for me.

4.) Get as much sunshine as you can. I know UV can cause flare ups, but the negative health effects of vitamin D deficiency is well documented. Furthermore, there’s just something about being outside. Throw a hat on, wear jeans and a long sleeve shirt, and get some time outside. For me, I’m at the point where I ensure I get as much time as I can of getting sun on my skin. I’m careful to not get sunburnt and I try to not overdue it. The great outdoors is great, and at least for me, helps me clear my mind and find happiness.

Disclaimer: my rheumatologist hates that I don’t avoid the sun, and it’s a constant point of disagreement between us. She admits she can’t argue with my results, but still advises against it. I’m stubborn (and maybe just willing to accept a high level of risk), but it has helped me. Over time, my tolerance has increased and I don’t see negative impacts from it. This is specific to me, don’t do anything that will harm you.

So here I am, close to a decade since my last flare up, living my life without restriction and inching toward a remission without needing pharmaceuticals. Is my story everyone’s story? No. Are there those of you with far worse situations? Definitely. Could some of my advice potentially help you? I believe so.

Take care of your body, take care of your mind, and they will take care of you. If you’re feeling lost, know that there’s hope. If you lack hope, look to God and Jesus Christ for help. Again, the intent of this post isn’t to be evangelical, but I also can’t leave out the most impactful thing I’ve done in my life.

I hope this post brings a glimmer of hope and inspiration to at least one person, and if you feel you need to talk to someone, don’t hesitate to reach out to me. I’m always happy to help however I can.

God bless you, and I pray for the good health of every one of you. You’re not alone.

Honda 230F, TTR50, PW50, Stacyc 16e, a ride on ATV power wheel, 2 gear bags, 2 gas cans, bike stand, and ramp. GMC Sierra 1500 with the short bed.

Who said Tetris didn’t teach us elders anything?

On deck for the weekend: replacing right/left air vents, oil change, fuel filter replacement, DSG transmission service, heater coil replacement, and replacement of right and left CV axles.

Picked up some new tools to help make the job easier and some sockets I didn’t already have. Added ODBEleven to the arsenal as well.

Not inexperienced with mechanics, but this will all be a first time go around on this car. Pray for me.

Good news is my 4 year old said he’s gonna help, so I’ll at least have someone to hold the flashlight.

My son started on a razor at this very track a little less than a year ago on his 4th birthday. He was missing the turns and flying off the track and had some hard lessons learned. Today, he went full send.

Today we started on the smaller practice track, and it was clear he was feeling confident. Was riding fast, braking hard, and purposely cutting it loose where he could. Moved over to this track which is the intermediate track. A lot tighter of a track. He was hitting the final straight over the tabletop at full throttle, clearly trying to get some air. He pulls up next to mom and says “I’m trying to get some air”. She says “well if you want to get air, you’d have to hit something like that” and points to this little kicker that’s been made by others. He just goes “okay”, turns his bars, and goes for it. Barely had time to get my phone out to film it.

He got up laughing, took a breather, and before getting back on to ride more he tells me “dad, crashing is kind of fun”. Rode until we told him we had to go home. Super proud of this kid.

What’s crazy is this is super not like his personality. He’s a pretty cautious kid, gets his confidence from experience and exposure. He’s doing great on the PW, and seat time has helped him become a little ripper.

And for all the experienced people, yes, we talked about how he needs to stand up, stay centered over the bike, and likely needs more speed. Today wasn’t about becoming the best jumper, it was him making a massive stride mentally that showed how comfortable he’s getting on his PW.

Being a dad to a little ripper is the best.

*reposted because I didn’t realize my original post had an error uploading the video*

*Edit: thanks to everyone for the love and support. The dirt biking community continues to be the raddest of all hobbies and I’m so thankful to get into it as a family. A big part of why it’s rad, is all you people. I told my son that every person I showed that video to said it was awesome, so nearly 500 people so far. He’s already itching to get back out and stick it. When he does, I’ll be sure to send receipts for a big collective Reddit “hell yeah”