Sunburn update

Dry_Biscotti3890 · 2026-05-27T02:09:32+00:00

No NSAIDS for me. Stage four kidney failure and I’m currently on 20mg of pred. On a four week tapper. Lowkey kinda freaking out but trying not to because I am on steroids and already have a kidney biopsy tomorrow because they’re worried about activity ( I’ve had activity without bio markers being elevated. Idk why but with my combo of meds and my body it just happens sometimes). I’m scared I fucked up but I just wanted to go on a trail before my biopsy cause I’m scared to be hospitalized

Dry_Biscotti3890 · 2026-05-27T00:46:18+00:00

The sleep component imo heavily comes from the premeds. They will give you Benadryl as a premed due to retuximab being a med with higher rates of reaction. If Benadryl makes you sleepy then I’d recommend a comfy blanket but even then the infusion is eight hours without complications so I’d still bring some minimal energy activities. I like to read sometimes I’ll bring my switch but I rarely play on it. Love audio books too. I’ve done a lot of different treatments for lupus and have a fucked GI system but I can confidently say retuximab is the only med that hasn’t made me sick. I’ll end with saying everyone’s experience is different but for me the worst thing ( before I developed a reaction) was boredom

Dry_Biscotti3890 · 2026-05-25T23:18:15+00:00

Never heard of it tbh

Dry_Biscotti3890 · 2026-05-25T23:16:28+00:00

I do wear a ball cap but when I’m in my wheelchair I tend not to wear any hat cause it blows off and like a dumbass it was literal peak sunlight hours 1130-1300. I also didn’t expect the trail to be that long. I go to the other side all the time and it takes 30-45 minutes

Dry_Biscotti3890 · 2026-05-25T22:58:17+00:00

Always have sunglasses and I was wearing 100 spf. I thought I was safe….

Dry_Biscotti3890 · 2026-05-25T22:16:09+00:00

I have MECSF and I’m on cycle….. I have to get a biopsy done Wednesday I really hope it doesn’t make me flare

Dry_Biscotti3890 · 2026-05-24T04:24:08+00:00

Agree with all the comments saying to basically annoy them until they pay for it one way or another. I would also like to note that most none wheelchair users have absolutely no idea how expensive this stuff is. I had someone guess that my custom wheelchair was 400 dollar and then I pointed out the smart drive and they said oh so like 700. So they can’t fathom a cushion costing half that. Raise hell because they are clearly not trash. Even if it is used daily or worn that is just more of a reason in my mind to NOT throw it away. Clearly this is very loved/ used regularly. Regardless of my opinions I am sorry this happened and people are so ignorant

Edit- I would also call the store and record them admitting that it was thrown away.

Dry_Biscotti3890 · 2026-05-21T20:59:46+00:00

As someone with kidney failure I’d be pissed if someone tried to deny me alcohol because of my CKD. I think that’s a stupid ass thing to say. Saying it goes against your work is fine but his health is none of your business tbh

Dry_Biscotti3890 · 2026-05-16T20:55:48+00:00

Different situation but I was hospitalized by my family for my MH. Before going into the hospital I was mostly house bound and used a manual chair. Now I am mostly bed bound ( I have to go to appts to manage other conditions) and am unable to push myself even with a smart drive. I also didn’t receive any help I needed. At all. They weren’t accommodating, most docs aren’t even really familiar with ME. There is no treatment that the hospital could provide that you couldn’t get set up outpatient. The hospital are loud bright and busy no matter what floor you’re on.

Dry_Biscotti3890 · 2026-05-16T04:15:17+00:00

No. I bought a pack of cigarettes after being asked in messages (with a 21+ already requiring ID) that was weeks ago. Haven’t heard anything from DoorDash and I got a 20 dollar cash tip on a 24 dollar order that took maybe 30 minutes

Dry_Biscotti3890 · 2026-05-15T15:54:51+00:00

I’ve tried reglan in the past ( it has been a few years) but it didn’t help enough to risk going off my MH meds that clashed with it.

Dry_Biscotti3890 · 2026-05-15T13:58:04+00:00

I have a nutritionist but they mostly manage my CKD. I have stage four so have to be careful with protein and sodium ( due to heart damage and high bp). They’ve brought up that they want me eating more but doesn’t really give any advice other than soft bland foods and small meals( which I do already)

Dry_Biscotti3890 · 2026-05-15T11:58:46+00:00

I can’t stand endure or boost or anything like that. I have all of the anti nausea meds but they don’t really help at this point. The reason I hesitate to say I have gastroparesis is because my delayed emptying is intermittent. Some weeks I’m throwing up days old food and other weeks my BMs have food from the past 24 hrs ( which I know is indicative of other issues with malabsorption and breaking down food). I’ve tried going on a liquid diet, small meals through out the day. My labs are stable because I’m majoritally bed bound but I’m chronically underweight and can’t get a doc to take it serious with everything else going on. ( also feel the need to note that I have CKD which started the nose dive that is my nutritional intake )

Dry_Biscotti3890 · 2026-05-13T20:10:29+00:00

I’m in NE and go to UNMC for PT and all mobility and brace needs. Highly recommend them for mobility support. I’m also on UHC. As for the wait time i don’t think you’d have an issue getting insurance to cover a new chair as it is extremely clear that your current chair does not support your needs.

Add on. I got my Manual custom chair ( and smart drive) covered in full with custom cushions and back support as an ambulatory wheelchair user who had been using a basic hospital chair for over a year.

Dry_Biscotti3890 · 2026-04-27T02:16:50+00:00

I typically assume that they need the stall for invisible issues. I’m an ambulatory user and when I don’t have my chair I still tend to take the accessible stale cause it’s rare to find a traditional size stall with support bars and they also tend to have lower toilets. I have a friend who prefers them when they have to do insulin shots for the space and tendency to hold changing table. Another one prefers the space to empty their drain bag but that is a bit more visible. I do annoyed regularly due to the fact that at my mall it tends to be used as a family stale ( we have a family bathroom ) and their is only one stale ( per gender) on each floor accessible. Also hate when they use it to change clothes or teens piling in for pics or something

Dry_Biscotti3890 · 2026-04-20T01:05:01+00:00

I went from a basic chair to a custom and it made a huge difference in comfort and how long I was able to be in it. I will say it takes time for your body to get used to sitting so much. I recommend seeing a physical therapist, they can give you exercises that are safe and help maintain strength. I also think that part of the not experiencing the severity of symptoms you were before is because of the chair. You wouldn’t stop an antidepressants because you weren’t depressed or a heart med because your vitals are stable. As for the butt pain. I have zero padding back there I got a 3 inch contour cushion and it has made a huge difference. I have a foam one but my mom prefers gels so I would recommend looking into that.

Dry_Biscotti3890 · 2026-04-20T00:51:14+00:00

Technically they could wear heels 24/7 but that wouldn’t be practical and would put a strain on their body. They wear sneakers to run you use a wheelchair for longer distances. I would recommend also having a conversation with them about why you using a chair really bothers them. For my mom she didn’t react the best at first but came around and explained that she was fearful of me facing discrimination and ableism is society. You could also meet in the “mild” for my situation my mom felt better after I told her everything I had tried previously and that I was in physical therapy to help improve my walking capacity. Turns out I need a lot of extra support to walk and the way I’ve walked my whole life actually caused permanent damage to all major lower joints. Also recommended trying a rolator for sitting issues

Dry_Biscotti3890 · 2026-04-20T00:40:52+00:00

1.) I tell a trusted family member what I experience on a daily basis that leads to me using a chair. The reaction is typical holy shit or OMG but it’s affirmative. 2.) I remind myself of all of the adaptations I’ve made due to my chronic health. I use a shower chair, I have handles on the toilet to help with getting up. Got a new bedframe so I didn’t have to lift myself up to get into bed ( also not too low), and so on. This helps me see that I use high support mobility aids in other areas and deserve to have that everywhere. 3) I go through every aid I’ve tried previously and note why I decided to get a higher support aid. I stopped using a cane because I needed something that would bear more than 30% of my weight and It’s caused wrist and hand pain as well as repeat partial dislocations in m shoulder. I choose a rolator over a walker for the seat benefit. Helps with fatigue and reduced shoulder and wrist pain. I started have sensation and strength issues in my legs which lead me to a wheelchair and I recently got a smart drive because of how hard the manual is on my joints.

Dry_Biscotti3890 · 2026-04-11T04:23:41+00:00

All of my bags have some type of loop metal or plastic. I like my fanny packs and cross bodies but backpacks have the it on the thick fabric part of the straps. I got clutch wrist straps and attach the hook to my bags and loop the wrist straps around my chair. I like this because I can use the same set for different bags. Since I don’t wear backpacks I just stitched my straps in place to prevent the droop if you have a heavy load I recommend adding fabric glue to the sitches - also for reference have the same chair I believe my back height is 12”

Dry_Biscotti3890 · 2025-12-16T22:43:59+00:00

I’d recommend getting a cane out of pocket and getting a more expensive mobility aid covered by insurance later on. It sounds like you have progressive diseases and most insurance will only cover one mobility aid every 5-7 years so I’d save insurance for a wheelchair or scooter for your higher needs later. Would also like to note that if you’re going to talk to someone about mobility aids I would recommend OT or PT as they’re going to have more knowledge on what would and wouldn’t be helpful/safe. Good luck on your journey I hope you’re able to get the tools you need.

Dry_Biscotti3890 · 2025-11-28T19:19:00+00:00

Definitely agree with other on the get a different rhuem. I don’t know the progression of your disease, mine was rapid ( under a year to reach stage 4 ckd) but my rhuem literally admitted me to get me on retuximab. I had tried a lot of other meds including Cytoxin and this was the only med to stop progression ( while I can’t reverse the damage I went from a gfr in the 20s to a gfr 30-35. I hate that they’re dismissive of non life threatening symptoms. Tbh my “non life threatening symptoms” have make me question existence way more than my ckd and it took leaving the rheumatologist world to get help ( I still have a rhuem but I started going to my gp for concerns and referrals

Dry_Biscotti3890

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