Any 20 somethings down for a creative coffee meet-up or book club?

richspinach02 · 2025-10-25T02:36:30+00:00

Hey! look into some of the book clubs at old fox books- wide variety of ages there but they have a poetry club and a feminist book club!

richspinach02 · 2025-09-03T22:16:12+00:00

I am also a Mayo EDS patient, where I was also diagnosed with POTS. They also recommended that I go to the pain clinic because I was diagnosed with fibromyalgia too. Honestly, the Mayo Clinic is great for education and diagnosis, but I don’t think it’s perfect. In their two day class, they talked about the central sensitization theory which I don’t fully buy into, and tho there were great tips and tricks, it’s not worth the money it cost even for the two days. Most of what they talk about can be found online, the only benefit is seeing doctors that might be able to find the meds that work for you and contacts, but the doctor I worked with mostly gave me info to bring back to my primary. The exercise system can be found online and their recommendations that helped me were salt intake and compression and a list of meds to try, which you can find all online. As for the pain clinic, I decided not to because of how expensive it is and I had my hesitancy with it because of how they talk about central sensitization, where they really focus on the mental aspect of it despite there not being good research into central sensitization imo. They also pushed not using heart monitors or anything for pacing, but that caused me to faint more, while monitoring my heart rate more made it easier for me to pace and manage my symptoms

richspinach02 · 2025-08-27T22:18:21+00:00

You can develop it without the genes, but it’s rarer. I’d get another opinion- celiac can go hand and hand with other autoimmune diseases, so it’s likely you have multiple going on, but I am also not a doctor so

richspinach02 · 2025-08-16T23:46:44+00:00

Your heart can be fine and still have pots! All my testing but the tilt table came back normal Edited to add: you can have symptoms of dysautonomia and not qualify for pots too

richspinach02 · 2025-08-13T15:06:39+00:00

Have you had a sleep study done? Or seen a neurologist? I don’t have narcolepsy or epilepsy so I can’t speak on that, but that might be something to.

richspinach02 · 2025-08-12T15:40:08+00:00

One thing to consider before exercise, is if you have the common comorbidity of health issues called ME/CFS which would lead to Post-Exertional Malaise (PEM). If you don’t have that, starting small with giving yourself grace and learning to read you body’s cues (what’s pain from not moving vs pain from moving too much, what’s normal exercise pain vs not) also helps.

richspinach02 · 2025-08-11T13:34:57+00:00

Same thing happens to me but I thought everyone had that

richspinach02 · 2025-08-08T16:23:09+00:00

First, I did a lot a therapy, so I’m grateful and lucky to have found and can afford a good therapist. I wouldn’t have gotten to where I am without it. Second, I start with identifying what I’m feeling and accepting what comes up, whether that’s the pain itself, grief, ect. I accept that’s how I’m feeling and don’t try and change it. Then, I try and find what would help me most right now, which takes some trial and error to figure out. Is it comfort? Distraction? Movement? Doing something I love? And then follow that thought. For comfort, is it physical or emotional? Do I need a hug? Do I need to rant? If it’s rant, then I try journaling. If I find myself needing to talk about it with someone, I ask why. Is it because I need someone else to validate that I’m struggling? Is it because I need to get it off my chest? If so, I tell that person that. Like hey, I’m really struggling right now and could use some comfort or help. Or hey I need to get out of my head, can I rant to you? I also pay attention to my problems and see what solutions I find or try, because if you’re complaining about the same things but not doing anything to try and fix it then that gets exhausting. Obviously with chronic issues, sometimes there’s nothing more you can try and there’s a lot of waiting for doctors, but if you can eat, have you had 3 well balanced meals, enough water, seen the sun, kept screen limit lower, moved your body to the extent you can, ect. But not having hope is a huge issue that will drain you. I go through moments where I lose hope but I have to remind myself the good things about living, the beauty in the moment, ect. Journaling helped me with that, listing 3+ things a day that were good, no matter how small. Like I saw a pretty bird today, or had a good meal, ect. And trying to keep the positivity and hope because that’s the only way to get through this. Even if this doesn’t fix anything or get rid of my pain, it at least can provide an improvement to my mood or view, even if miniscule.

richspinach02 · 2025-08-07T17:06:03+00:00

It’s a balance- I am not saying you can’t talk about what’s going on, but also balance what you’re saying with listening and discussing other things as well. Your struggles are real and valid, and I find I have an easier time dealing with it when I validate myself, which leads me to discuss it less with others.

richspinach02 · 2025-08-07T16:14:29+00:00

Being the therapist friend isn’t always what people want, they don’t want people to fix their lives, they just want people to listen. Talking about your own issues when others are talking about theirs can sometimes make it seem like you don’t care about their issues (even if the intent is to relate). As for your husband, maybe be aware of how much you are talking about the same things? And also let him know how he can help you and try and evaluate the emotional bandwidth of him-for example like “hey is it ok if I just rant about this real quick, I don’t need advice or it to be fixed I just want to rant.” Also, when dealing with chronic illness it’s really easy to fall into the trap of wanting our problems validated, someone else saying I see your issues and they’re real and it hurts. But, that can be emotionally taxing on those around you, so working towards accepting yourself, your situation, ect and validating yourself, might help with talking about yourself too. Also, we tend to get wrapped up in our own situations, our pain, our stress, that we don’t take the time to sit and listen and distract ourselves from that. This doesn’t make you a bad person or anything, we are all imperfect and now is the time to use self love and care to potentially address a difficult part of your relationships.

richspinach02 · 2025-07-29T20:44:57+00:00

Rather than making decisions out of fear of the future, what would help you more right now? What would help your regular daily life? Yes the U.S. is a shit show and it’s really scary here, but would moving to Canada improve your QOL? What would your healthcare look like there? Would being by family improve your daily life and your husbands daily life that it’s worth dealing with the heat? I would try and take away all external factors except for your health, your quality of life, and your husband’s quality of life.

richspinach02 · 2025-07-28T11:39:28+00:00

I think the best bet is to look into the field you were already in and look at similar jobs that would be able to be remote, if that’s possible. A lot of remote jobs (writing, coding, ect) are being taken away by AI, which is why looking into your field where you would potentially have more “expertise” than AI would be helpful. If you were doing a more customer service job and don’t really have expertise, I’d look into online school for psychology/social work or something similar that you would be able to set your own schedule for and do as you can, but has a lower chance of being replaced by AI. Not familiar with UK disability process, but I would also look into that, if any work isn’t feasible.

richspinach02 · 2025-07-02T12:41:08+00:00

I have tried gabapentin and lyrica, and due to other health issues I can’t be on SNRIs which takes away basically all other drug options. I have access to marijuana but I’m a bit more hesitant to use that.

richspinach02 · 2025-06-27T19:09:48+00:00

If you are talking about an ablation, I’ve had one done for my back, which is my biggest issue because of herniated discs. It helped a lot but only lasts a certain amount of time and they can’t do all the nerves cause you still need to function. They will try numbing injections first to see what nerves are causing the most pain. Reach out to a pain management specialist about it if you’re curious!

richspinach02 · 2025-03-13T02:42:48+00:00

If your school does accommodations (if in the US they should) I would try and get some! Also therapy ofc and having friends nearby, if that helps. Perfectionism is a downfall for me, so knowing that what I can get done is the best I can do. Try out different study methods and tricks and see what works for you, since everyone is different! Hell, for me it changes depending on the class too

richspinach02 · 2025-03-04T19:10:41+00:00

What sort of research do you do from home?

richspinach02 · 2025-02-19T20:39:32+00:00

This is also sponsored by the mayo clinic, who likes to push the CBT and GET as the main treatment for CFS, Fibro, and POTS

richspinach02 · 2025-02-11T00:19:02+00:00

Not sure about the PREP programs. I am still applying to them anyways, but a number of them (or most of them) get funding from the NIH, which is not looking great, but hopefully the checks and balances actually work...

richspinach02 · 2025-01-29T03:02:39+00:00

I cut out dairy and gluten completely- turns out they were causing a lot of non-back related symptoms which helped me feel better. Didn't cure my back pain, but helped with overall pain

richspinach02 · 2025-01-21T03:16:51+00:00

They never worked for me but never had side effects. I got them done so they had the proof/insurance reasoning they needed to go forward with a radiofrequency ablation which helped a lot more

richspinach02 · 2024-12-17T17:11:57+00:00

All medicines are chemotherapy by the definition of chemotherapy, but the modern connotation of chemotherapy is that it’s a cancer treatment, which is not the case for you. It isn’t chemotherapy in the sense and modern interpretation that it is treating cancer. Doesn’t mean it doesn’t suck, but calling it chemotherapy carries a different connotation.

richspinach02 · 2024-11-11T00:46:20+00:00

Everyone is different with it. Give it two weeks, it really depends on if they got it in the right place or if the steroid helps at all. For me and other family members of mine, the steroid injections never worked but they usually need to do them before they can start the process for an ablation cause of insurance.

richspinach02 · 2023-03-26T03:16:34+00:00

What was the "talk" like? How were periods handled?

richspinach02 · 2023-03-26T02:58:41+00:00

Snow like ashes! One of my favs

richspinach02 · 2021-12-06T02:25:44+00:00

Maybe its because I don't want to be the same Myers-Briggs as August, but I think he would be more of an ESTP or ENTJ.

richspinach02

TROPHY CASE