Ahhh What Fresh Hell Is This Today?
Last updated: April 2023
It took 4 years to get diagnosed with Lupus, I was told I was depressed and didn't know I was depressed...
My growing list of symptoms
Even though I had terrible burn blisters all over my face, as all light burned my skin. Including public buildings lights like supermarkets, and hospitals etc. I couldn't keep anything solid down, I have had 7 operations in 7 years, including a hysterectomy which I didn't want, but due to undiagnosed pain around menstruation time I was advised and so desperate I had the operation. I have had my esophagus stretched as I couldn't keep food down, I won't bore you all with multiple hospital stays etc. I was bed bound for 4 years, then a wheelchair for 3 years.
Thinking the worst was over...
Loads of pain meds...I was not even told that Oxycodone was an addictive opioid. I changed my diet, which really helped. It was very, very hard to change my eating habits of a lifetime. I thought, "hey I have conquered, I am beating this hip hip hooray." I was up and walking, I didn't have to sit in a dark room anymore, as the light still bothers me but not as much. I can open the curtains now and go out with protection ...
Lupus rears it's ugly head
Now I can't pee. I just started falling over for no reason, hiccups and sickness every time I eat AGAIN. Also, my joint pain is back with a vengeance. I get out maybe once or twice in a month, if I am lucky, as I feel so ill I don't get dressed. I am cold all the time. Hydroxychloroquine ruined my eyes, as I had dry eyes anyway, so my eyes are not good enough to be able to read much anymore. Today I was told Lupus can affect the brain so I have been referred to a neurologist by my urologist because I had a fall at the appointment while getting up from my chair.
"Is this a bad joke?!"
I have had issues with my liver, kidneys, pancreas, fibromyalgia, and eyes. I even got thrush in my belly button. I never even knew that was a thing. I had it everywhere else including my mouth and throat. At this point, it feels like it's like a BAD joke... what fresh hell will I awake with tomorrow?!
I have 2 sons with severe autism, and they need so much more than I can give them. It's them that keep me away from Digitas lol. I am so sorry to moan and groan it's just been a hard 10 weeks in bed. Then I received the delightful news today, Lupus in the brain (not confirmed yet, referred for MRI). I thought, "I am fighting and fighting and I just got out of the hospital due to my issues peeing..." They think now that issue is neurological. I had a catheter bag, as I was finding it really hard to go when I can hardly crawl to the toilet.
Feeling desperate for relief
I am latex intolerant... guess what the catheters were made of??? Yup. Fresh hell. So now I'm having to wait for latex-free bags. I have had a kidney infection since Feb 6. I am taking lots of antibiotics and I have had enough. It just feels like no one has any help for me. I will try anything honestly. I lost most of my hair and every single tooth. I am seeing straws and camels everywhere .... Any suggestions would be gladly received. I have spent all my savings on private doctors, shamans, and charlatans. So now I am in the hands of the poor, old, broke NHS, and nobody in the UK seems to know how, or what, to treat lupus.
I don't normally feel sorry for myself honestly, Just today was riding that camel's back and I am only a skinny little straw lol. I hope you are all having better days, I hope for better days too.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?