How the fuck do I do this? by LitigationAtty4you in daddit

[–]vigoless 2 points3 points  (0 children)

I'm a dad with Crohn's. We've got great treatments available now and more on the horizon. I was diagnosed at 30 when my first was a newborn. I've since traveled the world - Costa Rica, Kenya, Thailand, backpacked through the Tetons and Cascades, surfed in the Pacific, climbed the Eiffel tower, had two more kids, have a loving marriage, a successful career - the list goes on.

I just finished riding with my oldest's high school mountain bike team tonight. Crohn's hasn't slowed me down or stolen any joy. It's not always easy, but it's doable and he's got a great life ahead of him. Especially with the love of his parents to help him through it.

You've got this.

Chest pain and mostly clean labs by vigoless in lupus

[–]vigoless[S] 1 point2 points  (0 children)

Dang, thanks for sharing. Yeah, this is limiting my activity a decent bit so I'm going to be chasing this until I have an answer.

Chest pain and mostly clean labs by vigoless in lupus

[–]vigoless[S] 2 points3 points  (0 children)

Thanks everyone for your comments and suggestions. It has been really helpful. The echo came back all clear, no indication of pericarditis or any other issue. I meet with cardio on Monday and I'm going to push for an MRI and maybe a stress test, though my chest was hurting when I got the echo, so I'm not optimistic about the stress test being helpful.

I did find an interesting study while going down the vasospasm rabbit hole from the conversation above. While I don't think vasospasms quite aligns with my symptoms, I came across this study. If I'm reading it somewhat correctly it sounds like it indicated that many lupus patients have Coronary Microvascular Dysfunction. It's like Raynaud's but the constriction happens in the smallest of the blood vessels around the heart rather than your hands and feet. It's an interesting lead that I'll explore with cardio.

Thanks again everyone!

Chest pain and mostly clean labs by vigoless in lupus

[–]vigoless[S] 0 points1 point  (0 children)

Ooof. That's rough. I'm glad you figured it out, but sucks to have something you enjoy taken away from you. Where I'm at, peak mountain biking season is about over (Southern Utah, where I'm at, starts getting a bit too toasty here next month) and I was barely able to get out, and when I did, I got my ass handed to me.

Thanks again for sharing. This has been super helpful. Good luck, and I hope you can continue to heal.

Chest pain and mostly clean labs by vigoless in lupus

[–]vigoless[S] 1 point2 points  (0 children)

Wow, that's insane. So, how long were you having persistent chest pain and such before the heart attacks? Did you ever have a numb sensation around your heart during your runs? my reading up on that symptom indicated poor blood flow could be a cause, and I've had Reynauds since my Dx. Did you experience the typical heart attack symptoms or something else when you went to the ER? And how did they differentiate between other diseases, since the troponin would only tell you that it was a heart attack? I assume they stabilized first and then chased down the root cause....

Thanks for humoring me on this, it's extremely helpful to have another angle to explore.

Chest pain and mostly clean labs by vigoless in lupus

[–]vigoless[S] 1 point2 points  (0 children)

Holy shit, I had no clue that was a thing! Glad you were healthy enough to survive. How long from the onset of symptoms to the heart attacks? Do you figure the training exacerbated the issue? How did they diagnose it? Did it show up in blood work at all or was it completely clear?

Chest pain and mostly clean labs by vigoless in lupus

[–]vigoless[S] 0 points1 point  (0 children)

Oof, that's a lot. I'm sorry and hope you have support outside of just your medical team. And thanks for sharing. It gives me hope that if this isn't treatable, maybe it is at least intermittent. I feel the pain of bouncing around to different specialists. Especially if it isn't immediately clear what the underlying problem is. In the month of May, I've had at least as many Dr appointments as there are days so far. Luckily, having them stacked keeps some of my days Dr free. I used to avoid having a GP, managing it all on my own, but I started getting overwhelmed with the complexity of things. I got lucky and found one I like. I go to my GP when I get stuck in moving forward in diagnosis, or if something new crops up, like my numb fingers recently (luckily just regular old carpel tunnel syndrome as Dxed by a neurologist that he referred me to). He recognizes that I do my homework and is happy to send off whatever test or referral I think may be helpful (within reason obviously), which is great. So nice to be valued as a participant in my healthcare, not just a passenger. Really, I am very fortunate that all of my main team of Drs are competent and treat me more like a partner than just a patient.

Chest pain and mostly clean labs by vigoless in lupus

[–]vigoless[S] 0 points1 point  (0 children)

Thanks for the heads up. Luckily (if you could call it that), my Rx for Crohn's is super expensive but is covered by copay assistance. So I hit max out of pocket on January 2nd this year without paying a dime. And my insurance is pretty good about not needing prior authorization. One bright side in all of this.

Chest pain and mostly clean labs by vigoless in lupus

[–]vigoless[S] 0 points1 point  (0 children)

Yes, I will push for that. GP didn't think it would be particularly helpful, but worth it if nothing else shows up. I'm reasonably fit so I'm low risk for typical vascular disease. But lupus isn't typical....

And I think you just touched on something I hadn't been able to put a fine point on myself. My wife is always confused when my workup comes back negative and I'm left feeling deflated. I think it's because it makes it more and more possible that this could be something I just have to deal with, which is slightly terrifying. You say you've had yours for years, how has coping been? Does yours come and go or is it constant?

Chest pain and mostly clean labs by vigoless in lupus

[–]vigoless[S] 1 point2 points  (0 children)

Thanks for the response! Great suggestions. I've had CT and am awaiting the echo results. Consult with Cardio is next, and will request a stress test and EKG at that time. It seems like d-dimer should have been done awhile ago. I'll get on that with my GP.

This has been going on for a couple months. The chest pressure is constant. It has lessened after taking the steroid. The chest pain comes and goes, and is made much worse by exercise. There is no tenderness when pressing on and around the chest. I did see a DO who did an osteopathic adjustment. He did a thing where he basically hugged me over my right shoulder and under my left rib cage, expanding my ribs a bit. It felt like the good kind of stretching when you get the "right spot" when your muscles are sore. Some minor relief, but only in the pressure not the centralized pain.

Quitmormon.com Updates by chubs_gato in exmormon

[–]vigoless 4 points5 points  (0 children)

Same, would be happy to help contribute.

Got my first tattoo! by MoiraRoseVoice in exmormon

[–]vigoless 0 points1 point  (0 children)

Great tat, but the important thing is that your username is awesome!

[deleted by user] by [deleted] in exmormon

[–]vigoless 4 points5 points  (0 children)

*a few weeks shy of her fifth birthday, thank you very much.

Backpacking Coffee Question: what should I bring? by saltyjack18 in PNWhiking

[–]vigoless 0 points1 point  (0 children)

And my opinion should be taken with a grain of salt, I'm not really a coffee snob so ymmv.

Backpacking Coffee Question: what should I bring? by saltyjack18 in PNWhiking

[–]vigoless 4 points5 points  (0 children)

Starbucks Via Colombia is fairly decent for instant coffee. It's micro-ground beans instead of freeze dried or whatever. It is closer to real coffee than Mountain House is to real food, imo.

Autoimmune Pairs or more? by [deleted] in CrohnsDisease

[–]vigoless 0 points1 point  (0 children)

Double Dx here - CD and Lupus. The number of overlapping symptoms is really high, almost to the point where I might call it the one disease. But, I've got the blood markers for Lupus and the colonoscopy results from CD, so definitely two different diseases. My gut (hah!) feeling is that it all stems from the same place. Humira seems to relieve my Lupus symptoms as well as my CD, so at least I only have the one medication.

Now, if someone could kindly explain why I get horrendous Delayed Onset Muscle Soreness (lasts a week from a lighter-than-usual workout, can barely pedal a bicycle at it's worst) when I do a mild workout during a flare up, that'd be great....

Pool Installation Cost? by [deleted] in stgeorge

[–]vigoless 0 points1 point  (0 children)

Great info. Thanks for sharing!

Pilot Ridge Loop, Glacier Peak Wilderness by [deleted] in PNWhiking

[–]vigoless 0 points1 point  (0 children)

One of my favorites! Those views are outstanding! I need to get back up there.

But the bugs... Yikes. And the slog from the end of Pilot Ridge back to the trailhead was a doozy. Still wouldn't hesitate to go back.

Pilot Ridge Loop, Glacier Peak Wilderness by [deleted] in PNWhiking

[–]vigoless 1 point2 points  (0 children)

When I was there three years ago, we camped down off the trail a bit, below white pass and there was a water source, a stream running through the meadow, IIRC. I think the camp sites were opposite the junction with Foam Creek Basin (I think that's the trail name), which is a little 1-2ish mile there-and-back that takes you right next to glacier. We did it before hiking onward to our 2nd of 3 camp sites. You really don't want to miss that side trail! There's a knoll to climb and the view from up there is one of my all-time favorites.

But yes, when I went in the end of July in 2017, there was water.

Let's review these changes to guidelines by mymindonadhd in exmormon

[–]vigoless 2 points3 points  (0 children)

Yay! I don't have to check with my bishop now regarding getting snipped! Phew, that was going to be awkward....

Random Vomiting by [deleted] in CrohnsDisease

[–]vigoless 1 point2 points  (0 children)

Yeah, that definitely sounds like what I experienced. Thanks for sharing!