u/FightingButterflies

I thought i was getting the flu because fter nearly a lifetime of having lupus (undiagnosed and diagnosed) I suspect im having the first flare ive noticed. Its kind of annoying. And strange, because I have what's been classified as "severe" lupus (its been dubbed as such because due to the many ways it affects me neurologically, with seizures, intracranial hypertension, and lots and lots of headaches, and psychiatricly/psychologically, like a paralyzing panic disorder, generalized anxiety disorder).

I suspect I have had a fever for two days (and following age ten, back when fevers almost killed me on multiple occasions, ive rarely gotten fevers). I haven't measured it (dont have a thermometer), but my body is cold, clammy, a little shaky, and I feel so, so cold. Its 96 degrees outside! Something weird is happening.

WT actual F!?!?

Would i be going overboard if I went to see my rheumatologist if it hasn't stopped tomorrow?

I dont own a thermometer, so I guess its time to invest in one. Any recommendations about what thermometer is good AND won't break the bank?

Hello my fellow butterfly fighters! I hope that you are doing well. Or as well as can be expected.

Over the years I have been encouraged by so many to start a vlog chronicling my day to day life living with lupus, but I haven't done it. However, now im thinking I should give it a go. And ive been thinking that as part of it i should interview others who have had their own fight. And maybe even medical professionals and family members involved in the fight with us.

What do you think? Would it worth trying? Would you follow it? Does it sound interesting?

Hi guys!

How fast can your potassium shoot from solidly normal to low? Two weeks ago mine was 4.4. But I feel like it has tanked.

Fyi, I have a LONG HISTORY of low potassium requiring the infusion from Hell. It sucks and, well, its it feels like someone is infusiing me with a hot ice pick when they do it.

I have a port-a-cath, aka a port (i opted for it because i was tired of getting poked every time I went for my Saphnelo infusion). A port that hasn't worked in the last few years. I got it a little more than ten years ago I think.

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Anyway I was told I needed to get it replaced, but on surgery day the interventional radiologist said they merely fixed the port and got it working again. You'd think this would make me happy, but it doesn't, because I know I'll have to do this ALL over again and again in the next year or two, if not sooner. That time theyll put a new one in.

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For me, the recovery from this was a bitch after they put it in, and this revision surgery recovery has been a bitch too.

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I feel torn. Grateful that I now have a working port, but not happy knowing im going to have to go through this all over again relatively soon.

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Am I an ingrate?

Hi everyone. I'm not trying to convert anyone, sooner worry. I'm just wondering about other Christians who have this disease. How do you feel about it? Do you feel like God has forsaken you? Or do you feel that God has blessed you with it?

I may complain a lot about what Lupus has done to me, but I feel blessed. Do you know how the Bible verses where Jesus was asked if a blind man was afflicted because of something that the man had done, or because of something his parents had done wrong. I think thats a reasonable question, and Jesus' responds that the man wasn't blind because of something he or anyone in his family did wrong. The blind man was in that state so that others will see the magnitude and beauty of what God could do through him. Then he cures him.

This doesn't mean that those of us who remain afflicted aren't loved by God. In my case, I feel like I remain like this so I can be example of what its like to go through an illness like ours. I first realized this one day when my Grandpa was really suffering s he was dying. He was embarrassed because he had become incontinence. I told him that I knew what that was like, because I started going through incontinence when I was twelve years old. He said "you have been going through that for all that time (I was 27 when we had this conversation)" and I said yes. He said "why didnt you tell me when it happened?" And I responded "it was a horrible time, and I was embarrassed." " but im telling you that I may not be dying, but i know the fear, the embarrassment, etc.

Fyi...i actually didnt know at the time that I was headed towards dying at the time. I was well into the beginning of heart failure. Two years from heart failure, 5 from needing a heart transplant. But thank God a vigilant doctor figured out why my heart was never resting between beats, which was wearing my heart out. It turned out that a crappy HMO doctor prescribed me a medication that turned out to be an amphetamine, thinking that my headaches were due to allergies, and prescribed me that dangerous prescription to fight the allergies. He almost killed me. (Thank God that medication is no longer on the market, because it ws doing the same thing to other patients, and some people were killed by it).