Dear, patient readers: every test comes up with nothing but question marks but while I am on an IV feed, I get stronger and feel better. Then they send me home where I deteriorate more and more rapidly.
This cycle has been by far the worst. I am running a fever now and instead of odd pain stabs here or there, they are MASSIVE and very much more painful. I was going to resume publishing yesterday because I felt OK in the morning but by afternoon, it was all down hill on a ski jump slope. Last night I had to double my pain pill doses and they lasted not 6 hours but only 2 or less hours. So I must be put back on an IV feed until someone figures out what is going on. I haven’t eaten a real meal in a month, for example.
I will look like a fashion model at this rate…YUCK. I like doing hard construction work and had set up a summer’s worth of carpentry and cement making…all down the tubes. I want muscle, not skeletal starvation looks!
I really appreciate all the kind comments and am taking my computer that I use to post things with me this time in the hospital so I will resume writing by tomorrow, I hope.
Elaine Supkis
Culture of Life News 
Hi Elaine, Sorry this continues… ask for an MRI of Chest, Abdomen & Pelvic study. You are in my prayers.
Save your strength. Get well. We know you’ll be back. Focus on getting better. None of us are going anywhere. 🙂
What i’ve learned from ‘mystery diagnosis’ , rare disease needs rare doctor. IV is giving big clue, where is the pain ?
Looking forward to your China piece Elaine, when you’re feeling better. Sounds like an intestinal ailment like Crohns if you’re unable to get nutriment outside of IV. But I expect they’ve tested for that already. Here’s hoping for successful diagnosis right quick.
Elaine – I wish you a speedy recovery. I do hope this doesn’t turn out to be paraneoplastic syndrome.
All the best
Anjan
I hope not also.
Whatever that is, It sounds ominous.
A speedy recovery, please.
Quite possibly it is something in or around your home.
Occam would suggest that if you return to your ill state every time you return home, have professionals check out the home, the people, the animals, the plants, the water, the air, the soil, the septic or sand mound. ( I would start with the water.)
Along the lines of CK’s comment, does your husband exhibit any unusual symptoms which would indicate an environmental factor associated with your home/property? Do you know if there was ever any industrial or mining activity nearby?
Systemic Candidiasis possibly? Just a thought….hoping the best
I agree with CK. If you have relapses every time you return home, could it be something environmental? This is about the time in the episode when Dr. House would break into your home and look around for non-obvious toxins causing a savage allergic reaction.
Anyway… hope you feel better soon and resume your uniquely realistic viewpoint about the world.
If you can get some Luigols or pure iodine, add one or two drops to an 8 ounce glass of distilled water.
Old timey solution, but effective. Takes out parasites, flukes, and the odd virus.
I can send you some pure stuff if you want to give it a try
Edit : course it depends what was in the IV
Best wishes Elaine. I know this is very selfish to ask, but could you show one of your family members how to post here? Or perhaps a Caringbridge page to keep us informed? We worry, but only because we care. You’re in my prayers.
Please Take Care. You are Missed
It is hard to type due to hands shaking.
My problem is internal and after all the exams, yesterday my latest doctor (a woman who has seen me in the past 20 years) has decided it is all about my reproductive system breaking down badly.
I agree with her. I just entered menopause recently and this is no normal menopause. My uterus has been operated on in the past four times starting in 1963. It has prolapsed, once, too.
So we are going to talk tomorrow about removing all this now useless stuff. I hope this will be the end of it because my pain killers are working less and less and a six hour dose lasts for less than 4 hours and I get no sleep at night because it is much worse at night.
I miss doing the news and so many things are happening but staying alive is also important.
Sounds like the menopause from hell, Elaine.
Glad you and the doctor have zeroed in on the problem.
Wishing you a speedy recovery and a return to good health after the fix 🙂
Thinking of you + wish you find the right person to help you
Wow. That wasn’t on anybody’s radar. I hope it works.
Your symptoms are too severe to be simply menopause. There must be a hormone or cytokine-producing source either in your reproductive system or elsewhere in your body, that is producing these in an uncontrolled manner. Godspeed the doctors find and remove this source for the sake of your health asap.
Anjan, this is what my regular doctor, husband and I believe, too.
We can’t treat the real problem until we fix this reproductive system of mine which nearly killed me four times in the past (collapses, infections, hemmhorages, etc.)
I am now, as of last night, taking double the dose of pain killer and…it barely stops the sharp stabs of pain. I must have slept less than 3 hours last night.
Maybe gall bladder too?
BINGO! I JUST CAME HOME FROM DOCTOR AND JOHN, CHRIS (HUSBAND AND MY BEST FRIEND) FIGURED IT OUT JUST A SHORT WHILE AGO!
Just to add, the reason is a friend was similarly in huge amounts of pain, getting frail, and it was due to a bad infection of the gall bladder. And I apologize in advance if you already ruled it out. Just tossing other ideas out there for you.
I hope your doctor discovers the problem. Get well as soon as you can!
I don’t know all your symptoms, signs or investigation results. I would suggest you do some research on paraneoplastic syndrome and cytokine storm. If either of these ring a bell with respect to your clinical picture to date, push to get the appropriate further investigations arranged to obtain a precise diagnosis of what ails you.
I’m a family practitioner in the UK, so I don’t have the appropriate skill set and experience to manage your illness. Still, you can email me if you wish.
I didn’t read this until this morning and this came just a few hours LAST NIGHT when my friends and family did an experiment to see if it was my gall badder and IT WAS>
Thank you, Rob, for joining in and you were the first to hit the head of the nail and I can’t thank you enough to take the time to think about all this and report here.