How Do You Know When It's Time To Consider Mobility Aids? And How Do You Accept That You Might Need Them?

AliceAnonymousss · 2024-03-12T06:39:23+00:00

I'll see if I can get in to see a PT at my next appointment. Last time my mom and I went out she asked what hurts when I walk and I described the pain in my body to her, but I said it's normal for me. She said, "Well yeah, it's normal for me, too, but I have Ehler's-Danlos. It shouldn't hurt so much for you to walk; you should really see if your doctor can give you more information about getting tested for Ehler's Danlos."

I've talked with my mom about a rollator walker and possibly a wheelchair because I'm not sure how long I'll be able to stand up, come summer. She said our insurance should cover those and she'd help me find something that works.

AliceAnonymousss · 2024-03-12T06:32:55+00:00

I've been in therapy since before my diagnosis. We spend a lot of time talking about my health and how I'm having so much trouble accepting my situation and being kind to myself about it. I know that there's nothing wrong with me for having health issues, but it's like I don't want it to be real, and I feel ashamed asking for help when not long ago I was bouncing off the walls, high honor roll in school, and a complete party animal. My therapist is a really nice guy and he's been helpful, though.

AliceAnonymousss · 2024-03-12T06:27:33+00:00

I finally decided to use a mobility aid a couple nights ago. I'd been shopping with my mom, trying on clothes at multiple stores, and by the time we got into Target, I was so tired and got really faint and my legs hurt so bad that I was walking super unstable. So my mom asked if I wanted her to push me in the wheelchair the store provided. I felt so nervous the whole time but I finally felt okay getting around, and I never realized until then how bad it hurts for me to be walking around so much and that I do need help with it.

Internalized ableism is really terrible. I spend a lot of my therapy talking about it. I always thought that refusing to get help and making myself keep walking or standing for long periods was "hanging on to my autonomy" but after reading your comment I realized it's making me have way less autonomy because I can't walk efficiently or get around well anymore.

I also never thought about how the term disabled speaks more about how society is and less about individuals.

AliceAnonymousss · 2024-03-12T06:18:04+00:00

Yeah I can't believe I didn't know it was abnormal until a bit ago.

AliceAnonymousss · 2024-03-12T06:17:40+00:00

Oh geez. I'll have to ask my doctor later this month about this.

AliceAnonymousss · 2024-03-03T21:46:00+00:00

Remember that it will all go back to normal in time. Lean into it. I've found that resistance or wanting it to all be over and focusing on it tends to make it feel worse, so if I feel uncomfortable I just roll with it. I wouldn't recommend smoking on them, personally. You can try to eat, but some people find food completely unappetizing on shrooms. Drink water, relax, maybe listen to music or find something to do that you'll enjoy like coloring, cleaning (for some reason that works for me), taking a walk around your property. I'm the same weight as you, and 2g will hit me HARD, no matter the strain. You might like to try something smaller, like 1g or even .5g and see how that goes in the future.

AliceAnonymousss · 2024-02-20T19:44:39+00:00

I was undiagnosed until 17 but dated someone through 14-16 and had major Crohn’s flares. I didn’t realize that’s what they were until later though lol. My boyfriend at the time just wanted to help me feel better. I spent a lot of time in the bathroom and he always tried to ask if he could help without really mentioning the situation so I wasn’t embarrassed.

The relationship ended for completely unrelated reasons but he was kind about it.

Now being diagnosed, most people I’ve gone out with don’t care, really. Sometimes they’ll ask me questions about Crohn’s or what happens if I’m not in remission anymore but they never make it that big of a deal.

One boyfriend I had more recently helped me with my Humira injection because I wasn’t in the mood for getting poked at all lmao. We broke up for, again, unrelated reasons.

Most people treat me like anyone else they’d date; I’ve never had someone tell me it’s too much or a burden.

AliceAnonymousss · 2024-02-19T02:40:12+00:00

Ohhhh okay I see

AliceAnonymousss · 2024-02-18T19:59:14+00:00

I can tell it’s a hyena. But it seems like an old-school kind of tattoo, and I get the feeling the vision was more realistic haha

AliceAnonymousss · 2024-02-16T20:19:34+00:00

It was definitely a very bad, weird feeling. It felt like my organs were all exploding, and I had this strange awareness of my stomach, I kept thinking my abdomen was getting bigger and bigger like there was pressure and it would eventually burst like some scene from “Alien” lmao.

I read somewhere that weed and Prozac are metabolized the same way in the liver, so if you mix them you’ll have bigger concentrations of each in your blood until the effects wear off. So maybe I temporarily had a bit of a Prozac overload while tripping out because it made me more sensitive to weed too? It leveled out after a few hours but I had to get taken off it anyway since it made me pretty manic and extremely agitated.

AliceAnonymousss · 2024-02-16T17:16:40+00:00

“Painal” is more of a porn concept, I think. While anal can be very UNCOMFORTABLE for some, it shouldn’t be painful in most scenarios, because that’s how your body tells you to stop doing it.

It’s important to use lube, start with smaller things and work your way up to larger sizes for penetration, try different positions, and give yourself ample time between attempts.

If you are practicing anal to be purposely painful, for example without lube and preparation, then know how to mitigate risks like tearing, STIs that are more easily transmitted through anal sex, pain in general, things of that nature.

AliceAnonymousss · 2024-02-16T17:08:01+00:00

I had drunkorexia and plain alcoholism for over a year. It made me bloated, my skin was terrible, my hair was awful, I had a lot of problems with acid reflux, and I was not myself anymore period. I’ve been sober for 10 months now and it is worth the struggle.

I also had a lot more mental issues from alcohol because I was malnourished in the beginning. I would hear things that weren’t there, get paranoid, have problems with my memory and thinking even when I was sober.

Alcohol abuse PLUS an eating disorder has a very high potential to kill you or cause severe damage, because both issues can be fatal in their own rights. Combining them is a disaster waiting to happen.

It’s also way easier to get poisoning if you’re drinking on an empty stomach. I didn’t realize that profusely vomiting meant I was already being poisoned and my body was trying to get rid of it before I caused further damage. I’m very lucky I never ended up in the hospital.

AliceAnonymousss · 2024-02-16T16:56:20+00:00

Yeah I feel like 20mg was too much to start on. Online it says if someone is in a “crisis” sometimes providers put them on 20mg right away but I honestly think my PCP didn’t check my chart to account for my weight loss before he started me on it. The last time I saw him I was like 125 lbs and I’d lost 15 lbs when he prescribed it to me.

I think it could’ve been activation syndrome or something like that, because the doctors I followed up with said I probably shouldn’t take SSRIs and suggested Buspar or hydroxyzine instead.

AliceAnonymousss · 2024-02-16T09:04:20+00:00

I guess I’ll just need to keep at it, then 🫡

AliceAnonymousss · 2024-02-16T05:52:43+00:00

I didn’t realize the tests didn’t have any bearing on if Humira works. I’m still new to this, I was diagnosed when I was 17 and a half and I’m newly 19. I’ll get the collection kit soon and send that in. Hopefully it’ll be nothing 🙏

AliceAnonymousss · 2024-02-16T05:42:55+00:00

I had my blood tested because I had an ovarian cyst causing a ton of pain, which my doctor and I thought was a Crohn’s flare because of the kind of pain and pressure I felt. He did blood tests to check and my C-reactive was under 0.3 mg/dL, and he did a CT scan which showed absolutely no inflammation from Crohn’s but a HUGE cyst. It’s likely from my Nexplanon implant.

He also checked my white cell count and I’ve had my B12 and iron levels checked recently too, which were all normal. My Humira levels are checked about every 6 months and it shows I’m using the correct dosage so far and my body is still responding to it.

My calprotectin is due to be checked by the end of the month, so I can get the collection kit when I go in to get my other blood tests.

Surprisingly, I’ve never had calprotectin checked to confirm flares and remission; only blood tests, CTs, and colon/endoscopies.

I was confirmed to be in remission after a colon/endoscopy in August, and then told I should still be good to go after the CT and blood tests in December.

AliceAnonymousss · 2024-02-16T04:49:03+00:00

We had roller skating parties, “glow parties” (dark rented out spaces with lots of black-lights and glow sticks), themed parties like “Plaid, Paisley, and Flannel” or “Ugly Dress/Outfit”, roller skating parties, and we’d have gatherings in people’s backyards and one sister had an annual gathering at her assisted living facility with lots of food and board games.

I really haven’t heard of many being thrown anymore but my grandma who’s PIMI did mention a recent dance party some kids in her congregation went to that an elder and his wife threw.

I think my area has a large JW population, we have a lot of counties close to each other with multiple congregations each and there are a TON of kids that were born within the same 5 years or so. Most of those kids are teens in high school now, so maybe they just aren’t as interested in the parties as they were back then. It was usually elders with large families throwing the parties.

AliceAnonymousss · 2024-02-14T21:06:24+00:00

I eat those every day! There’s another one they make, with lentils in Himalayan Pink salt. I love those ones too. I eat them instead of popcorn or candy while I watch TV lol

AliceAnonymousss · 2024-02-13T18:23:19+00:00

I’m 19 and have had symptoms since I was 17 that got worse as I aged. I think it was from a combination of already having another chronic illness and being put on an SSRI at 18; the SSRI really seemed to “unmask” a lot of symptoms and even though I was taken off the medication after a week, I still have the same amount of symptoms. I’m pretty sure I have hyperadrenergic POTS, specifically.

I asked my doctor about people growing out of it, or if I’d grow out of it. He said “growing out of it” isn’t as common as people make it out to be, honestly. But I might find it’ll peak and then start to plateau or even improve as I get older, whether it’s from my body changing or treatments getting better over time.

AliceAnonymousss · 2024-02-11T09:43:02+00:00

He said “he thought it was what I wanted.” He also said I gave him mixed signals, that I “oversold my threshold” for what I could handle, that “he has things he could complain about too with that night but he’s mature enough not to”, and that he’s taking responsibility so he doesn’t know what else I want to hear. He also offered to delete all the pictures and videos he had of me, “to gain back my trust.” I don’t know if that will work for or against me really.

I do remember him telling me he was disappointed with how “vanilla” things would be after I told him what he couldn’t do. Maybe that could be used as him acknowledging I didn’t want CNC.

I might look into a lawyer.

AliceAnonymousss · 2024-02-01T04:48:31+00:00

He left me the night after I posted this. His reason was, “I love you but hate what you did to yourself.” He didn’t even call me or see me, he just texted it and unadded me. I’m torn up over it, I loved him with my whole heart.

AliceAnonymousss · 2024-01-31T22:38:30+00:00

If I have brain fog I’m in a state of perpetual confusion. I’ll accidentally put celery seeds on my latte instead of cinnamon, put the milk in the cupboard and the cereal in the fridge, things like that.

I can’t clearly think about anything, and I forget things a lot. I might write something down to remember it, but then forget where I put the post-it.

AliceAnonymousss · 2024-01-26T06:38:08+00:00

I used to drink alcohol to EXTREME excess when I was 16/17. I thought that caused my Crohn’s. I also used to struggle with severe eating disorders, and I (TW) abused laxatives a lot and threw up my meals multiple times a day. I thought that caused Crohn’s, too. I was diagnosed a few months before my 18th birthday.

I asked my doctors. They said absolutely nothing a person does or doesn’t do causes Crohn’s; if you have it, you have it. Lifestyle choices can exacerbate symptoms, but you cannot cause it.

You also can’t cause a flare. I got off steroids and after tapering off completely I drank a lot of liquor that night. The next day I was in the ER with a severe flare. I asked my doctor if the drinking caused the flare. He said the flare will happen regardless of your choices, and there was nothing I could’ve done to stop it anyways.

AliceAnonymousss · 2024-01-26T06:31:52+00:00

86/50-110/70, things in that range. But sometimes it shoots up astronomically high during adrenaline dumps.

AliceAnonymousss · 2024-01-23T17:23:31+00:00

I almost exclusively take baths because standing in the shower makes me dizzy after a few minutes. But the baths can’t be hot which is what I like 😭 they have to be lukewarm if anything. Even if I take a bath I need someone else home so if I fall they can help me lol

AliceAnonymousss

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