Rare disease
@medicalupdates.bsky.social
Hobbies- doc apts & pharmacy trips
I’m having a miserable week. I’ve got an allergy rash, my car poked my eye and now it’s unhappy, and I tweaked my back. I almost ended up at the drs that I’m avoiding.
December 23, 2025 at 1:26 AM
I’m having a miserable week. I’ve got an allergy rash, my car poked my eye and now it’s unhappy, and I tweaked my back. I almost ended up at the drs that I’m avoiding.
My everything hurts & I’m packing for a big show & my stupid general doc wants to have a meeting about why I freaking want Tylenol with codine. my kidney dr says It’s a good idea. She just needs you to fill out a freaking form for me to sign. Just be a good cog & let me not hurt sometimes.
December 3, 2025 at 7:33 PM
My everything hurts & I’m packing for a big show & my stupid general doc wants to have a meeting about why I freaking want Tylenol with codine. my kidney dr says It’s a good idea. She just needs you to fill out a freaking form for me to sign. Just be a good cog & let me not hurt sometimes.
Today I have been thinking why do we expect an afterlife. Like why isn’t one go good enough for us?
November 30, 2025 at 12:06 AM
Today I have been thinking why do we expect an afterlife. Like why isn’t one go good enough for us?
My prescription coverage is now insisting that I get my meds delivered or they won’t cover them. This is bull. It’s blackmail. Get them delivered or no drugs for you. Well f you.
October 9, 2025 at 5:26 PM
My prescription coverage is now insisting that I get my meds delivered or they won’t cover them. This is bull. It’s blackmail. Get them delivered or no drugs for you. Well f you.
A month or so ago I went into the ER for, what turned out to be, a pulled muscle over my rib cage. I went to my local hospital. The very hospital I got my hysterectomy from 9 yrs ago. They did a pregnancy test. If it had come back positive I’d have sued. What the heck!!!
October 8, 2025 at 8:34 PM
A month or so ago I went into the ER for, what turned out to be, a pulled muscle over my rib cage. I went to my local hospital. The very hospital I got my hysterectomy from 9 yrs ago. They did a pregnancy test. If it had come back positive I’d have sued. What the heck!!!
I was on Statins. Statins caused me to have joint pain, fatigue, muscle twitching, and cognitive issues. My general thought I was depressed. Another of my drs said maybe it’s the statin. The cardiologist was all take the statin. The other doctor said maybe we can stop it for a few weeks.
July 20, 2025 at 12:45 AM
I was on Statins. Statins caused me to have joint pain, fatigue, muscle twitching, and cognitive issues. My general thought I was depressed. Another of my drs said maybe it’s the statin. The cardiologist was all take the statin. The other doctor said maybe we can stop it for a few weeks.
youtu.be/s_nc1IVoMxc?...
The first spin of hospitals and doctors where I was making the decisions was when I was 13. My parents were proud I was making my own medical decisions. I shouldn’t have been making them but I was and I still am 34 yrs later. I feel this song in my bones.
The first spin of hospitals and doctors where I was making the decisions was when I was 13. My parents were proud I was making my own medical decisions. I shouldn’t have been making them but I was and I still am 34 yrs later. I feel this song in my bones.
Ren - Hi Ren (Official Music Video)
YouTube video by Ren
youtu.be
June 6, 2025 at 2:57 AM
youtu.be/s_nc1IVoMxc?...
The first spin of hospitals and doctors where I was making the decisions was when I was 13. My parents were proud I was making my own medical decisions. I shouldn’t have been making them but I was and I still am 34 yrs later. I feel this song in my bones.
The first spin of hospitals and doctors where I was making the decisions was when I was 13. My parents were proud I was making my own medical decisions. I shouldn’t have been making them but I was and I still am 34 yrs later. I feel this song in my bones.
So, I have kidney failure (state 3). It’s ok I’m fine. Or at least that isn’t the issue. The issue is I also have arthritis. I have been told there is nothing to do for my pain cause kidneys. Dr’s this is how people seek crazy plans from the internet. You have left me with no options and pain. Sigh.
June 3, 2025 at 1:39 AM
So, I have kidney failure (state 3). It’s ok I’m fine. Or at least that isn’t the issue. The issue is I also have arthritis. I have been told there is nothing to do for my pain cause kidneys. Dr’s this is how people seek crazy plans from the internet. You have left me with no options and pain. Sigh.
I thought that I was doing better. Turns out I was just drinking enough caffeine to overcome my exhaustion.
May 28, 2025 at 12:48 AM
I thought that I was doing better. Turns out I was just drinking enough caffeine to overcome my exhaustion.
I am good about getting my vaccines. I didn’t used to get the flu shot because I’d have an extreme reaction but then my immune system decided to malfunction & I added it into the rotation. I am angry that I can not get the shingle vaccine cause I’m not old enough. Yes I’ve had chicken pox.
May 23, 2025 at 2:56 AM
I am good about getting my vaccines. I didn’t used to get the flu shot because I’d have an extreme reaction but then my immune system decided to malfunction & I added it into the rotation. I am angry that I can not get the shingle vaccine cause I’m not old enough. Yes I’ve had chicken pox.
Hahaha, I have to pee but the bathroom is like 20 steps away and I don’t want to make those steps. How long have I had to pee? Oh an hr ish. What? Like I said the bathroom is just painfully far away. But you can see it? Yep I can see it and I will go soon.
May 23, 2025 at 2:49 AM
Hahaha, I have to pee but the bathroom is like 20 steps away and I don’t want to make those steps. How long have I had to pee? Oh an hr ish. What? Like I said the bathroom is just painfully far away. But you can see it? Yep I can see it and I will go soon.
Saw the immunologist today. I have Schrödinger’s immune system. My igm is 23 which is lower than normal but not low enough to meet the technical definition of immune compromised.
May 22, 2025 at 12:32 AM
Saw the immunologist today. I have Schrödinger’s immune system. My igm is 23 which is lower than normal but not low enough to meet the technical definition of immune compromised.
You ever wish that, when you went to your test results section of your medical portal page, you could see a progress bar on the test results.
May 15, 2025 at 6:45 PM
You ever wish that, when you went to your test results section of your medical portal page, you could see a progress bar on the test results.
Sigh, my legs and arms are now slow twitching. I don’t know if this is something people just rise above and live with or if I should be fighting harder to get dr’s to listen. Figure first step is to go to get all my blood work done. Then I can ask about the statin bs.
May 14, 2025 at 3:59 PM
Sigh, my legs and arms are now slow twitching. I don’t know if this is something people just rise above and live with or if I should be fighting harder to get dr’s to listen. Figure first step is to go to get all my blood work done. Then I can ask about the statin bs.
My legs twitching always upsets me. I hate the feeling and drs are always it’s fine. Sigh
May 5, 2025 at 6:29 AM
My legs twitching always upsets me. I hate the feeling and drs are always it’s fine. Sigh
Today my hips, knees, calves, and ankles all hurt and my husband is like sorry I took you out. Seems like it was too much. F no it wasn’t I’m fine. So now I’m pretending I’m fine.
May 4, 2025 at 1:41 AM
Today my hips, knees, calves, and ankles all hurt and my husband is like sorry I took you out. Seems like it was too much. F no it wasn’t I’m fine. So now I’m pretending I’m fine.
I just want to be bundled up I. Lots of blankets, sat in a wheelchair, and wheeled around a garden In the sunlight.
April 21, 2025 at 11:49 PM
I just want to be bundled up I. Lots of blankets, sat in a wheelchair, and wheeled around a garden In the sunlight.
Finally got one of my doctors to acknowledge that the miracle of my improved cholesterol may not be all that if I no longer feel like myself.
April 16, 2025 at 1:22 AM
Finally got one of my doctors to acknowledge that the miracle of my improved cholesterol may not be all that if I no longer feel like myself.
Lately I no longer feel like me and it makes me want to stop all my life saving medications. My short term disability is shot, my endurance is crap, I’m constantly avoiding something I’m allergic to, I’m now doing a ton of small things to not die, & even wearing my normal clothing is frequently meh.
April 13, 2025 at 12:10 AM
Lately I no longer feel like me and it makes me want to stop all my life saving medications. My short term disability is shot, my endurance is crap, I’m constantly avoiding something I’m allergic to, I’m now doing a ton of small things to not die, & even wearing my normal clothing is frequently meh.
My hands hurt a lot lately. I’m not horribly tired this second but I am a bit cold. Also I think I’m firing a Dr.
April 9, 2025 at 7:37 PM
My hands hurt a lot lately. I’m not horribly tired this second but I am a bit cold. Also I think I’m firing a Dr.
Some days my mouth is dry, my legs are twitching, and I just don’t want to anymore.
April 2, 2025 at 5:04 AM
Some days my mouth is dry, my legs are twitching, and I just don’t want to anymore.
My legs hurt so much tonight. I wish I was sleeping and yet I am awake.
March 22, 2025 at 6:36 AM
My legs hurt so much tonight. I wish I was sleeping and yet I am awake.
I went to an event with a buffet this weekend. I contacted the group ahead, I gave them a list of my allergies, they assured me that the ingredients would be listed on the tags, & I was assured there would be the option to order off the regular menu. I just wanted to look like everyone else.
March 18, 2025 at 4:05 AM
I went to an event with a buffet this weekend. I contacted the group ahead, I gave them a list of my allergies, they assured me that the ingredients would be listed on the tags, & I was assured there would be the option to order off the regular menu. I just wanted to look like everyone else.
I hate how my hands feel like they are on fire.
March 17, 2025 at 2:20 AM
I hate how my hands feel like they are on fire.
I hate how easily I wear out now. Also I am a medical nightmare.
March 6, 2025 at 3:39 AM
I hate how easily I wear out now. Also I am a medical nightmare.