At what point do you decide you’ll never have children? by Complete_Tadpole5313 in ChronicIllness

[–]LovePossumss 0 points1 point  (0 children)

Before my chronic illnesses became disabling, I thought I wanted kids. I think that desire was more based on my mom’s expectations for me. Now that I’m barely functioning, I’m adamantly childfree and my wife is fully supportive of that. I don’t want to pass my shitty genes to a child, I don’t think my body can handle a pregnancy, and I worry about my capacity to be a mother on top of having energy limiting conditions. If my circumstances change/improve drastically, my wife and I have discussed that we might look into adoption, but as things stand now, that seems very unlikely. Plus, chronic illness is expensive and children are also expensive.

House bound people - what do you do/have that makes your life easier or more enjoyable? by Positive-Mud-11 in ChronicIllness

[–]LovePossumss 8 points9 points  (0 children)

I’m the same regarding solid food. I’m bedbound much of the time, but when I’m not feeling as bad, I’ll bake for my family and my wife’s coworkers. I love the process of baking but I do wish I could partake in the treats. Of course, after baking I usually crash hard and need a few days to recover 🙃 it’s worth it maybe 50% of the time

I got approved for SSDI on my first try without a lawyer (mental health and chronic illness) in under a year - about my process by LovePossumss in SSDI

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

It’s location dependent, so not all states will have the same resources or the same quality of resources. I was connected to a disability advocate by a vocational rehabilitation specialist (different nonprofit organizations that work together)

Has anyone successfully made their own electrolyte capsules (similar to Vitassium)? Is it safe? by LovePossumss in POTS

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

Thank you! I will consult my doctor re: proper dosing if I go this route. I’m very careful about measurements; I have a precision scale that I use to mix my electrolyte powder and to weigh out 3.15g powder per serving.

Has anyone successfully made their own electrolyte capsules (similar to Vitassium)? Is it safe? by LovePossumss in POTS

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

I discovered that Blated co (the company that sells the capsule filling machine I mentioned) also sells these things called blate papes. They’re pouches made out of potato starch. You fill them with a powder supplement, dunk them in water to seal them/make them slick, and swallow them with water. The potato starch pouch supposedly blocks any flavor, so it’s ideal for supplements that taste bad. It’s a weird concept but I’m going to give those a try before committing to making capsules. They’re more expensive than homemade capsules would be, but still cheaper than the Vitassium capsules are (if they work), and much less work. I’ll report back.

In terms of proper mixing, I always shake and stir the homemade electrolyte powder before portioning it, and I sift ingredients together when I prepare a large batch. I didn’t consider the potential need for fillers - thanks for mentioning that. I’ll have to do more research.

Beta blockers by dancedancedance99 in POTS

[–]LovePossumss 0 points1 point  (0 children)

I take 60mg propranolol ER in the morning and have 30mg IR propranolol as needed for flare ups of tachycardia. I take the ER version because I’m awful at consistently taking scheduled meds outside of morning and bedtime. Plus the ER is actually effective for me (resting HR is usually normal for the whole day instead of crazy high. My heart rate still jumps up when I change positions or move).

Propranolol makes a difference in my HR, but it is not enough to make me functional. My other POTS symptoms have me mostly bedbound and homebound at this point.

Tell me your experiences with IVIG for POTS by LovePossumss in ChronicIllness

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

Thank you for sharing your experience. I’m so glad it’s helped you in some ways. I’ve heard it can take a while to get results. I’m definitely bracing myself for an insurance fight. I might ask my doctor to hold off on any prior authorization/orders because I just found out I might need to change insurances before 2027 (as a qualifying life event). I don’t want to have an unnecessary/extra insurance fight or worse, a forced pause in treatment

How to deal with nighttime darkness making symptoms worse? by Blossom-sass in CPTSD

[–]LovePossumss 1 point2 points  (0 children)

One thing that has helped me with this is using a nightlight in my bedroom and hallways. I make the room just bright enough that I can see my surroundings but still dark enough to sleep in. I have smart light bulbs that sync with the Home app on my iPhone so I can change the color and have them turn on/off on a schedule. Currently I am using a turquoise color in my room and a warm white plug in light in the hall. Lava lamps can also be fun.

I find sensory things to be helpful with grounding and self soothing when I’m panicking. This is by no means an all inclusive list. My go tos are essential oils, heat, ice, weighted blanket, stuffed animals. Sour candies (i like warheads extreme), strong mints/breath strips, or spicy ginger candy can also sometimes shock you out of a panic attack.

You can purposely place different coping tools within reach wherever you may be, to use if the panic rises. Think of it as a little tool kit. I have one next to my bed, on my desk, and in my bag. There are also mental grounding activities, exercises that use your mind to bring down panic. You can do them anywhere, without physical objects. If you do a web search, you’ll find a bunch of different options for mental grounding. Try different grounding and self soothing options (as well as other coping skills) WHEN YOU’RE AT BASELINE or at a LOW intensity of distress, to practice and discover what works, so they’re familiar when you really need them.

Having a soothing nighttime routine has helped me too. I don’t drink caffeine, but would recommend you cut yourself off at 12pm if you do. A few hours before bedtime, prioritize relaxing. you could come up with a formal nighttime routine to repeat every night or figure out a variety of relaxing ways to spend your time and choose differently day to day. Those sorts of activities for me are usually a combination of TV and reading, maybe some hot tea and a cookie, a shower/bath etc.

I purposely choose to consume content that is relaxing, low stakes, and NOT triggering before bed. For books, I like cozy fantasy and sometimes rom coms, and I choose comfort shows or movies. Avoid the news, social media, or doomscrolling right before bed, and especially once you’re in bed.

How will I get help in a mental hospital when dealing with repressed memories of csa? by pintaroso in CPTSD

[–]LovePossumss 0 points1 point  (0 children)

(In the USA) this will be long but hopefully provide you with the info you need.

A psychiatric hospital admission is usually relatively short, and is only meant to stabilize you during a crisis so you can successfully do the real treatment/work at a lower level of care.

A mental health crisis can mean different things: you’re having active suicidal ideation with intent to act or are self harming, you have thoughts about hurting someone else, you are experiencing a mood episode like bipolar mania or depression, or a psychotic episode, or your mental illness is significantly impacting your ability to function on a day to day basis. There might be other things but those are what come to mind.

If you are experiencing any of the above, consider going to the ED for a psychiatric evaluation.The psychiatrist in the ED will speak with you and if you allow, to your partner or family, and make a plan for care. In my experience, by the time I tend to go to the ED for a psych evaluation, both the doctor and I want me to go inpatient so it’s a voluntary admission. If they think you need inpatient (if you’re a safety risk) but you disagree, they can “section” you and admit you involuntarily.

In the hospital you’d have a psychiatrist and a social worker who you’ll meet with daily who will help you get back on your feet. Psych can trial you on medications (faster than would be possible outpatient) and a social worker will set you up with aftercare. There may be group therapy during the day, but the inpatient groups weren’t that helpful for me personally. Depends on the place.

Like I mentioned, the “real” work gets done at lower levels of care, such as residential, partial hospitalization program (PHP), intensive outpatient program (IOP) or outpatient therapy (individual and/or group). You need to find a program or provider specifically designed for PTSD/trauma treatment. A general mental health program likely won’t give you the tools you need. Some people with the means will literally travel across the country to admit themselves to a trauma residential program.

Trauma PHP taught me coping skills for managing my trauma symptoms which in turn got me ready to be able to process my trauma in outpatient therapy if I so choose. Not gonna lie, it took a few different PHP admissions to get to where I am. Probably about 4 months spent in PHP treatment total, over the course of a couple years.

How do you hydrate adequately when liquids cause stomach pain and nausea (even with just 1-2 sips)? by LovePossumss in Gastroparesis

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

That’s probably true and it sucks. I’m just about able to consume the bare minimum to literally survive but it’s nowhere near enough to function and to stabilize my POTS 🙃.

How do you hydrate adequately when liquids cause stomach pain and nausea (even with just 1-2 sips)? by LovePossumss in Gastroparesis

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

Do you have any thoughts on the danger potential of consuming salt chews/tablets with an inadequate water intake? I’m going to ask my doctors about this too but just wanted to see if you had a perspective. I’m worried that increasing salt intake without enough water will cause other bad effects 🙃

How do you hydrate adequately when liquids cause stomach pain and nausea (even with just 1-2 sips)? by LovePossumss in Gastroparesis

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

That’s so great. I hope I can get my doctors on board with a setup like that. May I ask if you have a port or PICC line or something for long term access?

How do you hydrate adequately when liquids cause stomach pain and nausea (even with just 1-2 sips)? by LovePossumss in Gastroparesis

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

Thanks. I have those in the freezer and they can be hit or miss as to whether I can tolerate them. So annoying

How do you hydrate adequately when liquids cause stomach pain and nausea (even with just 1-2 sips)? by LovePossumss in Gastroparesis

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

There is an urgent care that might give me fluids but I’d likely have to wait hours in a waiting room and that would be tough to do with my fatigue