Join CaringBridge during this most important time of the year. Your support means that we can continue to provide free, secure websites all year long.
8/4/2016 Latest post:
Above All pray!
Two weeks ago today, July 20th, a rash appeared on my legs. I had been outside picking up windfall apples. I noticed millions on little flying bugs and I wasn't sure if I was getting bitten or if I was just having a reaction to the grass. I worked for a good 40 mins. our so and picked up 15 gallons of apples. My legs felt itchy and I just figured that feeling would go away! I didn't give it another thought. Later that evening while sitting on our back deck having cocktails with our neighbors, my husband remarked about a rash on my legs. I looked down and noticed both legs covered in a bumpy red rash! It started to itch. I didn't think much of it and figured it would go away just as quickly as it appeared. The next day I started to have swelling in my hands. I made an appointment and went in to see my PCP and he prescribed Prednisone and called it contact dermatitis. The next day the condition worsened. I decided not to go on the prednisone because of all the spooky side effects of prednisone. As my condition worsened my joints started to ache and I could barely walk I then took a trip to the Urgent Care. This doctor too diagnosed me with contact dermatitis and told me to take my damn prednisone 60 mlgs! The next day the swelling inflammation and rash got worse. Again I took another trip to the Urgent Care. This doctor looked at me and said this is not contact dermatitis! And sent me to the emergency room. Once in the emergency room I was immediately given a mask and taken back to triage then instantly taken back where a team of four doctors took blood test after blood test and talked over what my condition could be. They came up with a diagnosis of vasculitis. Vasculitis has a wide umbrella with numerous types under it. They said that I would need a biopsy to find out what type of vasculitis this was. This team of doctors didn't want to scare me but they said that there are some very dangerous vasculitis types and that they needed to rule out all of those, so they admitted me to the hospital for 3 days to run a battery of tests! Blood test after blood test and culture after culture came back negative. Thank God...this indicating that there was no other organ involvement. Praise the dear Lord! So after numerous tests and cultures I was sent home because being on 90 milligrams of prednisone makes you highly susceptible to other germs in the hospital. There was nothing more they could do for me and I needed to have a biopsy to confirm a diagnosis of what type of vasculitis I have. The next day Monday, I went to see the dermatologist and she did a biopsy on my right underside forearm. She said we would hear in a week. She called me the very next day with a confirmed diagnosis of Leukocytoclastic Vasculitis (Google it), and again reassured me that there was no other organ involvement! She then ordered another battery of blood tests taking another 8 vials of blood. These have all come back negative, confirming once more that there is no other organ involvement...again blessed to hear this news. Lupus was also ruled out! Meanwhile, I have been dealing with muscle weakness, itchy/burning full body rash with the feeling of pins and needles to the point that i couldn't even handle a sheet touching my skin, muscle pain, joint pain, headaches, stomach cramping and today and yesterday a knew symptom of swelling in the head. Actually, I had swelling in my head while I was in the hospital too and then just after getting out of the hospital in a different location on my forehead. The doctors don't know what to think of this head swelling...possibly a deep hive reaction. Yesterday I had an appointment with my dermatologist and then another appointment with my PCP. My dermatologist looked my rash over, took my stitches out from my biopsy, and again went over blood work with me saying that everything again is negative...no other organ involvement! My PCP did a stool sample which revealed blood in my stool, a common side effect prednisone. I was extremely nauseated all day yesterday and making it to these doctor's appointments was all I could do. Horrible stomach cramps, light sensitivity, nausea, and headaches brought both doctors to the conclusion that I needed to have my retinas looked at. They have an ASAP appointment being scheduled for an eye specialist to check the blood pressure in my retinas. Awaiting confirmation on this appointment. This vasculitis could move into the retinas too so they are concerned. It can go into any organ in the body. But again so far, they think it's only in the skin. Today my dermatologist called and ordered another stool sample to check for parasites and another urine sample to check for blood in the urine. I have a doctors appointment at 10:45 tomorrow with my dermatologist.
I am sharing this so that I can get support from my friends and family. I need you guys! Please add me to your daily prayers and thoughts. This is one of the scariest things I've ever dealt with personally in my life! Every day dealing with this disease brings another new challenge. Never experiencing anything like this and doctors not having answers is also very spooky. One never knows what little curveball can be thrown at any stage of life that can alter the rest of your life forever. I've done a good job living life to the fullest up until this happened. My goal is to continue on that goal and beat this thing! There is no cure but it can go into remission and stay there for years, never to come back again. It can also rear its ugly head at any moment and have reoccurrances. I am hoping and praying for the former. So, above all pray!