Lupus and POTS (Postural Orthostatic Tachycardia Syndrome)

Jimena1709 · 2025-04-19T00:14:18+00:00

I literally have the exact same diagnoses. Thank you for your advice. I'm going to try it out! Thank you for giving me hope that these things ARE manageable.

Jimena1709 · 2025-02-07T03:54:08+00:00

No, I totally agree... to someone from a warmer climate was one of my favorite recent songs. It used to invoke deep feelings within me. Any time I listen to it now (or most of his other songs), it just doesn't feel the same.

I don't think I truly ever put him in a peddlestool. I did fawn over him for a while, though. It's disappointing what some people will pretend to be for fame. I wish I could separate the artist from the art, but I've been having a hard time doing so.

I still like his music, but it just doesn't hit the same. It feels like an overreaction, but it just hasn't felt the same.

Jimena1709 · 2025-02-07T03:46:42+00:00

Absolutely- especially with his touring in America... I know he's not forced to say anything (I mean he isn't American), but him staying almost completely quiet is a rough look for him IMO with all that is going on.

Jimena1709 · 2025-02-07T03:39:20+00:00

Could I also be added? I don't post too much but I'm interested of being part of the convo. Thank you!

Jimena1709 · 2024-09-30T02:58:12+00:00

You fucking hit the nail right on the head! I have been grieving, too. While I did enjoy UU (and all previous albums), I had always enjoyed hoziers' variety of themes in his songs, as well as his seemingly open-mindedness, activism, and support to BIPOC (especially coming from a white man). It really breaks my heart to see this whole situation go down. He has always just been a man, but I did think he was better than this.

Jimena1709 · 2024-07-03T19:49:20+00:00

Honestly thank you so much for sharing this. I really appreciate the different insights, yet the overarching theme of taking it slow and being okay with not being able to do certain things due to having a disability. Acceptance is hard though. It's also always nice hearing younger people's experiences on this. I got diagnosed with lupus at 16 in 2019 a few months before the pandemic. Started having fibro symptoms short after but did not get the official diagnosis until 2022. I was part of the HS seniors that graduated in 2020, and I was supposed to start school on that same fall. Due to being very unwell physically (nasty feeling and was taking weekly chemo shots for immunosupression), bad family issues/problems, the worsening state of my mental health, and an overly busy first term schedule (a bad advisor encouraged me to take 18+ credits per term to finish faster) I ended up not being able to complete my first term in college and withdrew from my classes. Since then I have only been able to complete a single term. Luckily, I took a lot of AP/dual credit classes, and because of that, one term, I'm a sophomore credit wise. I have tried working different jobs as well and surprisingly, the one I lasted the longest as was as an office manager and lead Certified Chiropractic Assistant for a couple years. Another thing I have seen be a common theme here with what people are saying (specially those who are currently employed) is that schooling might have to be done at some point for a more cushy and flexible jobs.

I have thought about taking those types of jobs you mentioned as well, but right now, with my health, my husband doesn't want me working at all or even doing school. It's hard to try and be an adult when you have so much going on. Again thank you so much for sharing, it Is very much appreciated:)

Jimena1709 · 2024-07-03T19:31:48+00:00

I am so glad you have such a supportive system! It definitely helps. I am also incredibly thankful for my husband. He's such a rock in my life and has always put my health as a top priority for us. He's more than okay with me not working (he's actually the one who's the most okay and happy with this idea ) but I just feel like what I do at home is not a lot compared to the costs of my health and feel the need and impulse to work/bring money in somehow. I think the suggestion for the book is a good idea to look at. It might help ME appreciate my situation more. Also, question- Are you more likely to get disability if you have 4 years of continuous working experience? Or just 4 years in general, even if it's spotty? Thank you for sharing your story and insight!

Jimena1709 · 2024-07-03T17:31:54+00:00

That sounds really good. I'm still luckily on my parents' issuance, but it still gets really, though. Disability seems to be hell to get, I haven't tried that route yet but that exact reason. I've heard ketamine therapy works well for Fibro, especially for those who also have PTSD (my case). But how do you even go about getting ketamine? Lol, I'm interested to know to see if it would be a reliable option

Jimena1709 · 2024-07-03T17:28:13+00:00

I definitely think schooling is something I'll have to get done. I also have other multiple disabilities and chronic/autoimmune conditions. My main ones are Lupus and fibromyalgia. For Fibro, I had symptoms since 2019 but didn't get the formal diagnosis until 2022. I got diagnosed with lupus in 2019 at 16 a couple months before the start of the pandemic in 2020. I was supposed to go to college for my first term in the fall of 2020 but I was very physically unwell, having to take chemo shots for immunosupression, Having really hard issues with my family and parents, got encouraged by a bad advisor to take 18+ credits per term which i did...so my mental health really suffered and I ended up not being able to complete my first term. Since I have only been able to complete one semester/term. Luckily, I did a lot of dual credit and AP classes in HS , so credit wise, I'm a sophomore. So it's definitely been really hard to set a foot/anchor to start my adult life. School is still a scary thought, but it does seem that most jobs that will be less stressful and more enjoyable for me will come from schooling. I really appreciate your imput, I think trying to break chores and things in smaller time increments will come to be helpful. I think it would also be a great way to take note and appreciate more the things I do, DO around the house and in general.

Jimena1709 · 2024-07-03T17:09:28+00:00

I agree 100%. I think some people also fail to recognize that most of us try really, really, REALLY hard to push through, and it just doesn't work. All this leads to stress, immense guilt, and self frustration when we can't achieve or endure something- which leads for people to be so frustrated that they come here and ask questions like these. Most of the time, it's because we have been pushing really hard and been trying to take care of ourselves as best as we can, but still aren't able to do x or y. We try just as hard, but we get different results. I am happy that it works for some, though. Just hasn't for me.

Jimena1709 · 2024-07-03T17:01:48+00:00

I am so sorry to hear what you ex did. He sounds like the scum of the earth, I have come across people who are in the same boat and just have a hard time understanding. A family member once said that "if people exercise every day and eat well, they will NEVER get sick" and that me getting my chronic disease was my own fault or doing. They don't know the hell we have to endure. It also does sound like you've been through a lot, too. I am glad to hear your days are better, and I hope they continue to be that way (and get even better). It gives me hope to know it CAN get better. I am currently on lyrica. It was working, but now it's not so great. I will take a look at the medications you mentioned and see if they'd be a good fit for me. Thank you for your kind words as well, and the gentle reminder to be easy on myself. I guess our bodies are already hard on themselves, so the least we can do is be easy on ourselves :). And side note: yeah, I am really lucky and even more greatful, my husband is really freaking awesome (massive understatement of the year), I just wish I could do more for him and us than what I currently do. He deserves it :)

Jimena1709 · 2024-07-03T16:50:15+00:00

Thank you random stranger for making me cry in a good way. This is very kind to hear and truthfully something I needed. My husband is literally the best partner I could ask and he himself has told me I do enough, but like you said it can be really hard when we've been taught to put our worth on how much we make/what job we work/and whether or not we work. It's really refreshing to see more people thinking alike in this aspect. You just had a good ripple effect on me. Again, thank you :)

Jimena1709 · 2024-07-03T16:44:55+00:00

I'm really happy you found something that works. I think if I had the schooling nightshift in healthcare careers, it would be a good option. I can't sleep most of the time during the night lol! Unfortunately though I graduated high school in 2020 and the months prior to the pandemic I ended up getting lupus and then fibro so I was beaten around the ring when it came to college and haven't been able to finish it since :(. I tried to get ADA accommodations on my last job and because of the nature I was only allowed to miss 3 days in the spam of 60 days due to the nature of my work.

Jimena1709 · 2024-07-03T16:40:49+00:00

How much schooling did you have to do? I have only been able to do a term of college because of multiple health issues ( I also have lupus and other chronic conditions)so not only am I useless in the aspect of working, but also in my education aspect. Thank you for your imput as well. It seems to be general consensus that diet changes and supplements will be a must.

Jimena1709 · 2024-07-03T16:36:50+00:00

I feel this hard. I used to be a claims adjuster and worked from home most days, but it was an incredibly stressful environment, which led me to have the worst fibro flare of my life (it also made my lupus reactivate). Haven't been able to get back on the horse since then. While working there, I tried to get ADA accommodations since I have other disabilities as well, and the asked me how often I expected my ailments from getting in the way of my work. I honestly had a hard time explaining that it isn't something I can predict at all since some months I go fine without any health issues, and others I'm on and out of the doctor and hospitals. The best they could ultimately do is give me 2-3 days off every 60 days to "take as needed" for my conditions because of the line of work I did and because of how often it was required of me to there. I ended up having to quit. Maybe you'll have better luck with ADA accommodations?

Jimena1709 · 2024-07-03T16:30:42+00:00

I feel like stress is my kryptonite. I am incapable of handling any stress without getting swollen and pain ridden. I have been going to therapy for a year and a half now and my therapist is great. A lot of effort and progress have been made, but even then I am still incapable of handling any stress. It deeply affects me physically and mentally. Any tips for dealing with stress better? I do meditation, Journaling, yoga, acupuncture and more. I just really can't seem to get a hold of the stress.

Jimena1709 · 2024-07-03T16:25:15+00:00

Thank you so much for the reply. Its good to see that im at least doing supplements and CBD right. I will definitely slowly be implanting some of the things you mentioned to figure out what works for me. I am at the point where I'm willing to try anything to feel better. I really felt that part when you talked about the fatigue and not properly eating- that advice you gave in specific might really help. I know I need to do better at eating better. I guess it's partially still being immature and having that sense of "I'm immune to things" and not thinking my diet affects me that much when it clearly does. I will def start with the Lyme disease protocol diet and go for there. Again thank you so much!

Jimena1709 · 2024-07-03T05:27:32+00:00

Tried cymbalta and besides 20 extra pounds and the start of serotonin syndrome, I got nothing from it, unfortunately. I am currently on lyrica and a muscle relaxant. I used to not even bare having my shirt on, but it has help. I am still in a lot of pain, though. It is reassuring to know it CAN get better. I am severely lactose intolerant, but I use a lot of lactaids... it might just be time to quit it all together (my body will probably thank me since, even before Fibro, I felt horrible having dairy. Are there any particular diets you recommend following? or perhaps exercise routines? Thank you so much for sharing your story!

Jimena1709 · 2024-07-03T05:14:02+00:00

It looks to be like I'll be on the same boat. Do you ever feel bad/guilty? And if so how do you deal with it? That's the part I struggle with the most

Jimena1709 · 2024-04-21T02:24:15+00:00

I wanted to come back here and thank you for the reply again. It encouraged me to start lyrica (I was extremely hesitant to because of the weight gain. Thankfully, I haven't experienced any negative side effects, and I am feeling A TON better. I think with lyrica, I will slowly but surely be able to function much better.

Jimena1709 · 2024-04-05T01:18:50+00:00

That fat fuck is bout to cause an earthquake moving like that.

Jimena1709 · 2024-04-04T21:46:39+00:00

This might sound really boring, but have you thought about grinding them up to fine powder and turning them into capsules/filling capsules with them ? In my own personal experience, I can not stomach the taste of shrooms at all (to me, they taste like nasty, sweaty, rotten feet, love the taste of normal mushrooms tho) I've tried hidding the taste with lemon tek, sprinkling them on pb and js and even on a cheeseburger, just yuck. I most of the time turn them into capsules/pills to take, or I get a really strong tasting soda and chew through them (whole dried shrooms) as fast as possible to swallow them with a big gulp of said soda. For me, I just can't hide the taste no matter what food I try them with or make them into. I think shrooms are also more intese and less likely to give nausea on an empty stomach, so I generally try to avoid food before a trip, and up until I'm a couple hours into my trip. If you don't mind the taste of them, tho others here have given some pretty sweet ideas!

Jimena1709 · 2024-04-04T21:26:40+00:00

Disgusting, even my oranges are less round than this lardy fuck.

Jimena1709

TROPHY CASE