Tuesday, May 7, 2013

My Mysterious Red Hulk Disease


May 1st, 2013 - Pale and Sick, but not mid Occurence
I don't usually discuss my health on this page, but lately things have been bad, which has lead to me missing my Sunday blog post, and I have been getting so many questions about my health from friends, that I thought a single link to point people to for answers might help. Took me all day because I had to take breaks and naps, deal with medical professionals on the phone, etc. I tried to sum up what happened in enough but not too much detail since it was a rather disgusting and terrifying experience that I don't really want to relive.

April 16th I went in for a deep cleaning at the dentist. All seemed to go well. That night I had the first occurrence of whatever mysterious health problem I have been suffering from.  The symptoms were weird and included initial itching on one part of my body that then turned into a painful prickly burning head to toe, & a flushed face and palms.  It was then followed by gastric distress which lasted for hours before I parked myself in the bathroom in fear of vomiting etc. and found myself in a cold sweat and losing consciousness.  My body evacuated everything in it just before the EMTs arrived to find me laying on the bathroom floor shivering uncontrollably, and unable to sit up without passing out. 

That first time at the ER they got me re-hydrated, gave me Benadryl and sent me home.  They were convinced it was allergies to the Novocain or some such thing, although there was no proof and my white blood cell count was up which they said might indicate an infection, so they told me to follow up with my Primary Care doctor and Endocrinologist, which I did.


May 2nd - "Red Hulk Disease" Lobster Face in Lab
The next 2 weeks were filled with visits to multiple doctors and several smaller re-occurrences of the above but without the passing out. I was mostly in my house or at a doctor. It seemed to happen every few days, but not as intensely as the first time, and it did not include passing out. I saw my Primary Doc, Endo, and a G.I. specialist’s PA. Many tests were done, and ordered.  On the morning of Thursday May 2nd we went in for the tests the G.I. specialist had ordered. I had my blood drawn, and went in to use the restroom when suddenly everything started all over. They said my face turned lobster red and then white as a sheet. Because I could feel the same sensations as before, but much worse, so I knew that my face was red and took a picture to show the doctors this weird symptom.  The lab techs helped me to an exam table and I started to go in and out of consciousness. Patch was called in and it only got better. She says my fingertips were turning blue, so they called 911.


Final I.V. and red stripe (reaction to an antibiotic)



In St Joe's ER they gave me I.V. fluids, and covered me in warm blankets to raise my body temperature which had dropped. My veins kept collapsing or running away from them, which was painful to say the least. My GI problems worsened so they admitted me to the hospital.  They gave me 2 bags of IV fluid in the ER, and two in the room plus  more with antibiotics before I started feeling more stable and my blood pressure started to go back to a more normal place.

I was in the hospital from May 2nd through the 5th. While in the hospital they took an EKG and X-ray of my chest, discovered it was clear, did a CT scan of my gut and discovered swelling "colitis" but no visible masses. I started to feel like a pin cushion as they had a very hard time finding veins. While in the hospital, the blood and urine tests came back to show that my white blood cell count was really high, indicating an infection, and they gave me I.V. antibiotics, which I developed an allergy to, and Flagyl which I am able to take in pill form. They ruled some things out but found no clear answers, stabilized me, and released me to recover at home and follow up with various doctors.

Patch Sleeping on the Couch in Room 5T10
Patch and Carlie were invaluable support while I was sick. At times I honestly thought I was dying. I know, that sounds melodramatic but when i couldn't stay conscious or coherent and waking up to people wiping my mouth and a nasty taste while struggling to breath and hearing people calling 911, I honestly didn't know if I'd make it. When they were discussing the possibility of needing to transfuse me and talking about internal bleeding, I was pretty scared. Patch and Carlie were like lifelines on a rocky sea and visits from Nick and Henry, kept me from descending into too much depression or panic.  Everyone at the hospital was respectful, and professional. The nurses were amazingly compassionate and great about explaining things to me, which helped reduce my anxiety some as well, but over all I felt anxious the entire time and am really happy to be home in my own bed, with my loved ones and animals to snuggle with. Nothing like falling asleep surrounded by soft warm purring cats and loving dogs.

Good News - It's Not Ecoli, Cdiff and It's Not a Tumor!



They found many things which I do not have including heart disease, E-coli, Cdiff, some genetic blood disorders, Celiac disease, a GI tumor, or Cushings, and they took some biopsies to look for other things. I have an appointment tomorrow afternoon to find out the biopsy results and follow up with the GI specialist who treated me at the hospital. The list of things that are not wrong with my body are increasing, but they have yet to narrow down what has been causing my symptoms so I am really hoping  he has answers for me tomorrow afternoon and we can resolve these issues ASAP so that my body can heal.

On an up note, I am stronger every day, 
 At first I was so weak that I was barely able to walk back and forth from the bedroom to bathroom and I spent the first two days at home sleeping a lot. My big excursion yesterday was a trip to the next room to sit on Patch's lazy boi chair while she cooked, but today I was able to come sit on the couch with my family for dinner and a few TV shows, surf the net, write this blog, and do some research about dying yarn. I missed my trip to Hawaii and had to cancel my plans to attend the Men's Knitting Retreat next week as I will be at doctors and hopefully healing, but I will not be anywhere near ready to fly to New York and participate in a retreat.  

May 7th, Finally Able to Sit on the Couch
My intention is that we find answers, and I get back to the health level I was at before this happened or better. I would very much like to be out riding my trike, participating in community events, knitting, participating in Farmer's Markets and art shows, etc.  Heck, I'd like to be in Hawaii with my family which is where I was supposed to be May 2-10. And I'd like to go to New York next week, but that's not going to happen. All my time and energy is focused on finding out what is wrong, not having another recurrence, and getting healthyPositive thoughts, prayers, candles, happy naked pagan dances etc. are most welcome.

Update: Tests are still being done, but it turns out to be, at least in part, due to Anaphylaxis caused in part by Oral Allergy Syndrome. More tests are being done.

Update 2: 6-30-13 After my Hospital visit in May (during which they said they were 99% sure I did not have C-difficile, I tested positive for it and was put on a total of 20 days of medicine to kill it off. In 2 weeks I will be tested to see if it worked. Fingers crossed. My allergic reactions continue, see later entries for details




3 comments:

  1. Sends you healing energy and happy thoughts.
    and plenty of gentle hugs and snuggles.

    ReplyDelete
  2. Wow, sounds like you've had a rough couple of weeks. I hope you have a speedy recovery & find answers! xoxox

    ReplyDelete