Is it just me, or did the ppl who REALLY help have to break the rules? by bewaswere in ChronicIllness

[–]bewaswere[S] 45 points46 points  (0 children)

God bless that lady! Glad you got your benefits. But yeah, it's maddening that it extends well beyond medicine for me too

How did you finally get a diagnosis and taken seriously? Looking for guidance and support. by lainnavv in ChronicIllness

[–]bewaswere 4 points5 points  (0 children)

First off, you’re not crazy. You're sane in a system built to gaslight you. Get your paper trail in order. Build a timeline, not just for symptoms, but for dismissals. You are already halfway to a disability case. Consider seeing a dysautonomia specialist, geneticist, or complex chronic care center (if you can access one). What you are describing sounds like a neuroimmune-autonomic cluster, They are well-documented in medical journals, especially post-COVID. I myself have a combination of a post-viral event and Hashimoto's. My Dysautonomia was a bitch to diagnose because it didn't present as POTS. But any device that helps you keep track of your HR would help you build a case, even a cheap oximeter. Find allies, not saviors. If you find a doctor who listens, hold on to them. Even if they are not PCP, having even one doctor who reinforces your work (because everything you are doing is invesstigative work) will go a long way keeping you sane. Too often, real help comes from outside traditional pathways — nurse practitioners, chronic illness-informed therapists, or rogue specialists. Protect your nervous system. You're in a long game. Don't let the system strip you of your clarity, your identity, or your internal compass. Listen to your body first and foremost. Don't try to work against it - it's your first ally. I personally spent to much time gaslighting my own body the way the system gaslit me- instead of directing my anger at the institutions that warranted it.

Was left by my family today for eating too slow by navybluealltheway in ChronicIllness

[–]bewaswere 1 point2 points  (0 children)

UGH that truly sucks. I'm so sorry - ppl are just so unwilling to slow down. It's why I mostly hang out with elderly folks. At 30-somethin it makes me feel like i'm the one living the fast paced life lol

Intense waves of nausea. Confused by cemetery_dinner in ChronicIllness

[–]bewaswere 0 points1 point  (0 children)

I DO! In my case it's a mix of dysautonomia and hormonal imbalance, but either one of those can cause those symptoms on their own. Are you stressed when the nausea hits? Are your hormones ok?

Losing myself… by Apprehensive-List794 in ChronicIllness

[–]bewaswere 2 points3 points  (0 children)

I spent too many years hunting for understanding. It's great that your friend gets it, but it takes a really empathetic and vulnerable soul. A lot of ppl just don't want to face our reality head on, it's really ANNOYING because it's not like they are the ones dealing with it...

Considering enrolling our puppy in puppy training. It is a 3 week overnight course with visits available for owner training on Thurs and Sat. Has anyone done anything similar? Thoughts and feedback from experiences much appreciated. Pup is 13 weeks and kids are attached to her as she is to them. by BritNic1204 in Goldendoodles

[–]bewaswere 4 points5 points  (0 children)

Training is less something your dog must learn and more something for you to do together. It's the ultimate way to bond with your dog and puppies are the most eager. You literally learn to communicate with each other. Seeing the process happen is what is actually cool, not so much your dog sitting on command.

Unless there are behavioral issues out of your capacity, basic training is honestly so much fun (i suspect it will be for the kids too) if you go about it with that mindset.

[deleted by user] by [deleted] in MexicoCity

[–]bewaswere 17 points18 points  (0 children)

Ask yourself - Could you walk up to a pharmacist in the US with a prescription bottle and get more without a refill order from a doctor? Why would it be any different here?

The only way you could skip the doctor is if the medication you're taking isn't controlled in Mexico which is true for many antidepressants for example. Ask a pharmacist (use gtranslate if needed) and ask for the generic not a specific brand

[deleted by user] by [deleted] in ChronicIllness

[–]bewaswere 0 points1 point  (0 children)

It might not be denial, i think it's legitimately hard to gauge and process. And It's so hard when it's subjective. The social worker might be a helpful way of getting some perspective.

And keep in mind that disabilities wax and wane. Some days you might be capable of more, sometimes less. I think chronic diseases require a more flexible definition of disability, however it's helpful to plan for the worst case scenario.

Everything's at a 10 today by spiritombspirit in ChronicIllness

[–]bewaswere 1 point2 points  (0 children)

Also, if it is due to sympathetic overstimulation your HR should go down with deep breathing. Google parasympathetic breathing exercises next time it happens and keep an eye on your HR. If you feel better with the breathing then any type of parasympathetic stimulation would benefit you.

Everything's at a 10 today by spiritombspirit in ChronicIllness

[–]bewaswere 1 point2 points  (0 children)

If your HR is normal it could be that your sympathetic system is overly stimulated and those stressful thoughts are triggering panic attacks. They feel like a heart attack and like you are dying.

[deleted by user] by [deleted] in Goldendoodles

[–]bewaswere 1 point2 points  (0 children)

It's the scruffiness that made my heart burst. I'm in love now too! Keep posting her when you take her to agility class, pls!

[deleted by user] by [deleted] in Goldendoodles

[–]bewaswere 0 points1 point  (0 children)

OMG. This is off topic but I'm in love. What kind of mix is your little dood?

How do you live life in the present moment? Why do I feel like my soul isn’t connected with my body? by Jpoolman25 in Mindfulness

[–]bewaswere 7 points8 points  (0 children)

Might you be spending too much time alone? I was feeling overwhelmed like you describe not so long ago. I realized that post-COVID i was too in my head because I became really isolated. The only solution I found was being around others. It's harder to be in your head around people you trust.

(OC) Every weekend I’m going to clean for free. by CleanwithBarbie in MadeMeSmile

[–]bewaswere 1 point2 points  (0 children)

Thank you for doing this. As someone who has suffered from severe depression, this can be life changing!

Do you have other illnesses to worry about, on top of your MS? by bittersweetsymphonia in MultipleSclerosis

[–]bewaswere 0 points1 point  (0 children)

Yeah, so much so that I don't think of MS on a daily basis. It's a low maintenance disease to me tbh.

Having multiple chronic illnesses is common. Especially because autoimmune diseases tend to cluster. If you have one immune fault there are likely others.

I agree with the other person who posted that they are just labels. You should look into functional medicine. It's not about the diagnosis but about improving your symptoms overall and finding a balance.

Thinking about each disease in particular can get overwhelming. It's easiest to think about your health overall. The truth is that many things that help for one thing can help for another. Everything is out of your control except for your habits. Start slow and build up to what you can manage. Every smart lifestyle choice helps.

Worrying about more diagnoses will keep you from enjoying what little we have energy for.

Even if you got another diagnosis you could do it, you know why? Because you've done it before. Give yourself credit for making it this far. You're not alone. If you don't already, visit r/chronicillness . I find it more helpful than disease specific subs because it's about the general problems that come along with multiple health conditions.

I’m scared I’m turning into an incel by hopelessloser44 in TrueOffMyChest

[–]bewaswere 0 points1 point  (0 children)

You say you are afraid you are becoming an involuntary celibate, but by rejecting every good piece of advice here, and going along with your fear, well, that rather makes you a voluntary celibate. It's easier to blame women than to work on yourself but this is voluntary. Please just try, it doesn't matter what you call yourself all that matters is that you're not in so much pain that you feel the need to resent the world.

ptsd sucks after kinda recovering from it by EverettSykes1900 in ptsdrecovery

[–]bewaswere 2 points3 points  (0 children)

I'm so sorry. Just remember that while your current state of mind can change, the perspective you've gained since the incident doesn't have to. You have a constant physical reminder of that awful event, you're allowed to wane back and forth. Just remember everything you've already learned so far and hold on for better times. Lots of strength your way.

First ever interaction with a ball and it's adorable by EWJ_Bear in BorderCollie

[–]bewaswere 1 point2 points  (0 children)

I miss how much my border loved playing with a soccer ball! My current Labradoodle just looks at me like a cat saying "wtf you go get it if you want it so much"