History of Shay's Illness

(My Summary: Basically in less than an hour on a hike I swoll up and it hurts to touch me in any way and my stomach is swollen really big. And there's like a billion other awful symptoms.It's been months and months. I was bedridden for a while, and I can't play my instruments because my fingers hurt. I know I'll get better however and I'm really grateful for peoples support. So I'm sure of 100% recovery soon. By the way I am NOT contagious.)

****NOTE: mother typed this up so thought I'd post it. She's been really supportive and proactive.

First of the year: Lost weight and is very very slim and feeling great, very active and healthy.

End of April - Left for summer job as a guide. Went running for half hour to hour a day and took hikes a few times a week. Stayed hydrated. Feels fantastic and is pretty darn skinny even more than usual on account of being healthy and eating healthy. She's freezing all the time, probably from being so skinny, even in Hawaii..

May 19 – Started a hike at 5:00 am. Felt sluggish and tired and had forgotten her waterbottle. At the top, she started swelling up and a friend shared some water. By 6 am back down (she had to have help to get down) and so swollen all over that she couldn’t even bend her fingers. She was given allergy medicine, aspirin and tons of Gatorade, water. This has continued. Her skin feels stretched and painful and hurts if someone bumps her or touches her. Driving in the car hurts because of the bumps. She is weak and tired.
May 23 – Came home. Swelling in hands and feet went down a teeny bit but she stayed swollen in face, trunk and upper arms.

May 24 – Went running and felt awful after.

May 25 – Tried to run, but had to come right back and lay down. Went to Dr. at Family Medicine. He prescribed prednisone for allergic reaction. It did not help at all. Next day slept for 24 hours straight.

May 28 – Went to a party and tried to play night games and ran a few miles.
May 29 – Early morning woke up dramatically swollen, and unable to move. Pain sent us to the E.R. They ran tests, chest x-ray and gave her IV fluids and also morphine. Stayed for a long time. Sent home with prescription of hydrocodone and referral to infectious disease. Blood tests normal. Liver and TSH levels on high side of normal.

May 31 – Still in pain mostly in trunk area. Back and neck hurt as well.

June 2 – Saw infectious disease doc. She ordered many blood and stool tests and CT scan of abdomen. Prescribed doxicycline (which we didn’t start at that time). CT scan was normal but showed a few problems. Hard day for Shay, vomited at night violently until she was shaking and chattering in shock.

June 3 – Good day swelling down. Got samples (hard and dark). Blood tests showed TSH elevated to 12. Started on levothyroxine .050MG

June 4 – swelling BAD. Skin very hot. Weak and tired but went to EIRMC for further thyroid testing.So sick almost went to ER. Shay violently vomited again at home. Slept from 4:00 p.m. until 10:00 am. (2 siblings had a flu bug and also vomited much worse for sick Shay.)

June 5 – Good day. Swelling down but still weak. Talked to uncle. TSH down to 8.

June 9-Saw endrocrinologist. He ordered hormonal tests, etc. All normal except elevated ANA

June 14- Echocardiogram done. Very scary for family considered surgery. Normal slightly raised pulmonary hypertension. Slight valve regurgitation

June 16- Doctor gives up and suggested we go to Mayo clinic. Another doc ups the dose of synthroid to .75

Uncle doctor consulted with a rheumatologist colleague who felt test results did not indicate that he needed to get involved.

June 22nd- We requested TSH test. It showed level at normal 1.94

June 23rd- Went to ER. They did an excruciatingly painful procedure and didn't really help. And according to CT didn’t. Sharai came home very sick and swollen.

June 24- Saw cardiologist. He was worried about Echo but suggested a CT of lungs. We opted to wait until we transferred to Utah or Mayo.

Saw gastroenterologist. He gave us prescription for amatiza, miralax and probiotics. Nurses at both doctors asked if Shay's blood pressure was usually low.

Scale showed Sharai had gained another ten pounds abnormally quickly and in weird swelling areas.

June 27-Symptoms basically the same except more swollen in face and legs. Fingers starting in again. Shay's legs they are so stretched and hard. She is weak and discouraged.

June 29 – Went to EIRMC lab to test for autoimmune hepatitis (it was negative). It took three nurses to get her blood and finally had to drip it out. Her blood seemed thick.
We traveled to a larger city. Had to have pain pills .

June 30 and 31 – Saw a doctor nicknames Dr. House (acts like him too unfortunately) at famous hospital. He examined her and ordered tests. All were normal. Some of the tests included: cortisol, ACTH, leptin, throid panel, sedimentation rate, c-reactive protein, rheumatoid factor, ANA and others

ANA interestingly enough is now normal.

July 1 – Very hard trip back home
July 11 – Symptoms basically the same.

The pain is constant and Shay is sad, and other symptoms along with swelling and pain are dizzy, ringing ears, heartburn so she doesn't eat very much, a rash, chronic fatigue. Does not leave her bed due to pain and fatigue. Cannot really do anything. Took doxcycline and felt better then went off and felt worse. Has been drawn blood for testing of everything it seems amounting to a truly astonishing amount of testing a.k.a being a pincushion.

......No one has a diagnosis or any idea.

(Note from Shay: I thought I should put in this flower because the above is pretty sad sounding and these flowers grow and start to thrive and are gorgeous under the hardest circumstances. Heavenly Father expresses a lot by nature. It's the little things. :)
I must admit that I really love how you can see me accidently taking a picture of me taking a picture of the flowers.