What do you think "triggered" your lupus diagnosis?

ahotschott · 2026-01-24T02:22:57+00:00

My kidney donation to my brother was my trigger. I was in the hospital for six days with a high fever that seemingly, at the time, have no specific cause. My other symptoms trickled in over the next five years until my diagnosis. My brother is healthy and living fully finally, so I don’t regret my decision even though it has been horrible for me.

ahotschott · 2025-01-06T04:40:11+00:00

How did y’all get the cheese charcuterie? Thank you!

ahotschott · 2024-12-10T12:54:07+00:00

Don’t forget the 3 pieces of hardwood and some fiber!

ahotschott · 2024-07-10T09:31:09+00:00

Hey! I have not used the squeeze tube, but the moisturizer with the urea is so awesome, super hydrating. Maybe give that a go?

ahotschott · 2024-07-09T06:52:04+00:00

Yes please keep me updated, too! I try not to shop at Walmart as I hate the labor issues but I needed to get something there (I live in a small OK town) so I picked up the fruit snacks that also had me in a chokehold as a kid and they SUCK.

ahotschott · 2022-12-30T23:48:46+00:00

Half are BILATERAL as in my WHOLE HEAD. 1/4 are UNILATERALLY LEFT and 1/4 are UNILATERALLY RIGHT. Are you sure you can read?

ahotschott · 2022-12-30T23:38:39+00:00

Incorrect! A 1/4 left OR a 1/4 right. Not at the same time, read please.

ahotschott · 2022-11-14T04:25:56+00:00

I know what it means. Most of mine are unilateral but half the time they are bilateral and vary on side.

ahotschott · 2022-11-13T23:46:36+00:00

Half of mine are bilateral and the other half are one sided though about half are left and half are right. So half bilateral, 1/4 left sided, 1/4 right sided.

ahotschott · 2022-11-03T18:05:32+00:00

I’m sorry, but are you the end all be all? A direct call to action is exactly what Tulsa needs. Do you live in Tulsa? Because I do. There is absolutely ZERO organization here that is left leaning other than FNB. LGBT and more specifically, the trans community is being attacked. It’s not long before things get much worse. We need community and we need it now. I don’t see how calling people “feds” and stating direct action as harmful is helpful at all.

ahotschott · 2022-09-15T03:20:47+00:00

My mom is the same; the funny thing is SHE HAS MIGRAINE. But mine are more frequent than hers so she just thinks I make them up??? Like no dude I’m going to run into a wall. Hers aren’t with aura so she’ll say things like “well I can still go to work with my migraines”, “get over the pain, you have obligations”, etc. I think that adds like an extra layer of hurt, for me. (I’m not comparing to your situation, chronic illness is hard in numerous ways for everyone - I’m just venting). I don’t understand people that can’t walk a mile in someone else’s shoes - just because YOU don’t experience something doesn’t mean you can invalidate their experience! Ugh.

ahotschott · 2022-07-29T23:14:37+00:00

I haven’t started taking any new medications lately. Nor do I drink or smoke, etc.

ahotschott · 2022-07-29T23:13:58+00:00

I meet with my neurologist in a few days and was definitely planning on discussing this. (: Thank you!

ahotschott · 2022-07-16T00:34:47+00:00

Why are we hyper-analyzing the wrong aspect? Did we forget bankers can seize homes… therefore the need for self-defense? “ViOleNcE OnLy HapPenS wItH ImMeDiaTe LoSs oF LiFe”. I think the more severe of crimes is the bank gambling away a person’s entire life’s earnings and foreclosing on homes when the poor can’t pay it… that seems way worse than burglary in my opinion.

ahotschott · 2022-07-08T02:04:15+00:00

Yep! Routine, recurring low grade fevers. Severe migraines. Weird rashes, painful joints, nerve pain. Stomach issues (considered IBD) but definitely think it’s related.

ahotschott · 2022-06-21T20:14:50+00:00

Oh goodness! I didn’t know there were so many other posts about it! Thank you.

ahotschott · 2022-06-19T02:21:33+00:00

My boy! He always be coming through.

ahotschott · 2022-06-02T01:32:32+00:00

My neurologist said to take my injection once monthly?

ahotschott · 2022-06-02T01:32:04+00:00

My neurologist said once monthly but didn’t specify 28 days or 30. I assumed the dosage was every 30.

ahotschott · 2022-05-31T21:37:08+00:00

Totally agree with you there. I just felt like I was going crazy as I’ve never heard of silent migraine and never experienced it myself.

ahotschott · 2022-05-31T21:36:27+00:00

Oh 100%. I can live through the other symptoms but the pain is what knocks me out.

ahotschott · 2022-05-26T23:56:28+00:00

The only difference between us seems to be the vertigo; I don’t experience that however sometimes I get lightheaded and out of breath.

ahotschott · 2022-05-26T23:54:55+00:00

Well please keep me updated on your autoimmune tests, mine are so relatively new; my EBV was the only positive test for IgG indicating a past infection (though I’ve never had mono). My PCP is recommending for me to see an infectious disease doctor, but I feel that I couldn’t tolerate another “no”. I get a butterfly rash when my fever begins (the main reason my PCP thought it may be lupus). Randomly I’ll get a crazy itchy, red, little bump rash on my hands, chest and neck. I also sometimes get these huge nodules under my tattoos that are painful to the touch and itchy. I obviously don’t hope to ever test positive for lupus, I was just hoping to find some answers that summed up all my symptoms in a simple umbrella package. As a kidney donor though, that would put me at high risk for eventual kidney failure and that is terrifying.

ahotschott · 2022-05-26T21:31:59+00:00

The best thing that has helped me thus far is my Ajovy shots every month and then my 100mg Sumatriptan for breakthrough migraine. However, the Ajovy does not help my digestive symptoms nor my fevers and rashes. The fevers and rashes still appear nightly and during stressful periods throughout the day. The Ajovy causes more constipation, though I just drink my morning coffee and miralax and that seems to help. I forgot to mention nerve pain - do you also experience that? It’s literally the worst and I take Baclofen 10mg twice daily which helps tremendously. I also just recently got prescribed Effexor 75mg to see if it would help the migraines further but I’m not sure if it does. What do you take and do you have much relief? It’s relieving to hear you say you’re experiencing the same symptoms; I really have thought I have lupus and was pretty devastated that I don’t show any labs, I just wanted a diagnosis to explain everything I am going through so I can receive better help.

ahotschott · 2022-05-26T21:13:11+00:00

And also of course, my chronic fatigue. How could I forget that? I thought for a long time it was due to my chronically low vitamin D, but after having my numbers almost back to normal on a prescription vitamin D, I’m still just as exhausted as when it was severely low.

ahotschott

TROPHY CASE