The First Visit

Health Score/January 22, 2009

1. Test Results – My kidney function is normal…yes, normal! My doctor & I are shocked but very happy. BUN = 18 (normal range 8-24). Creatinine is 1.1 (normal range .6-1.3). The reason we are so shocked is that we have delayed me taking in further Immunosuppressant medications, and I’m down to 10 mg of Prednisone per day. The Cytoxan I took was on December 1, 2008, and only lasts about a month – so I’m about 1-month without that type of medication.
2. Although, I’m still losing lots of protein and have slightly swollen ankles – so my Doctor is perplexed. My Lupus activity tests are either slightly elevated or normal – which means there is not much Lupus activity. So we are moving ahead with a kidney biopsy ASAP – to try and figure out what the heck is going on. But we think this is all super great news! Personally I’m taking it as a sign of Remission2 – we shall see.
3. I had the vena cava filter put into my vein under my left lung and heart last week. Simple procedure. The IV was harder to get done prior to the surgery than the filter being placed. I feel better having that in there to catch any possible “thrown” clots.
4. Still haven’t heard from the medical insurance company.
5. Still haven’t gotten through to EDD. I think I’m going to have to plan an in-person visit.

The First Visit from Lupus occurred in 1983. (Yes, I’m getting old.) I had recently been kicked out of high school, as I had been drinking beer at a friend’s house (and my “Christian” school found out). I luckily had been going to community college between my sophomore and junior years and had enough credits that I only had 2 classes that were mandatory that semester, so I had a lot of spare time.


With my free time, I went on a ski trip with a couple of teachers and friends. While on that trip I wasn’t feeling tip top. I was having a hard time getting out of bed and running out of energy quickly while on the slopes. Once home, I lost my appetite, started having severe joint/muscle pain and was generally exhausted. Over the following 2 months, my health rapidly deteriorated, to the point that I couldn’t roll over in bed. Mom took me to so many doctors we lost count. I do remember her dressing me in this green tracksuit with a white stripe down the side, it was my uniform for months.


Then the holidays arrived, it was Christmas Eve and at that point I was bedridden. Mom was trying to get me to drink some water, but once I swallowed, the water was rejected and would come back up. My Grandma lost it. I heard her voice raised downstairs and telling my parents that I was dying and they needed to take action. I was shocked; I hadn’t considered that I was near death. That was a revelation.


That night my parents took me to the emergency room at Encinitas Scripps Hospital. The ER doctor called in a specialist who wasn’t too thrilled to be called on Christmas Eve. He took one look at the rash that had recently developed across my cheeks/nose (called a butterfly rash) and diagnosed me as having Lupus. Many funny events happened through the course of that night, such as, the ER team forgot me in the restroom (and remember I couldn’t move on my own). I fell asleep against the call button next to the toilet. The ER was very busy that night and ran out of room. At one point, while we were waiting for the specialist, they wheeled me out to the hallway next to someone that had died in the ER that day. That was an interesting conversation.


I was checked into the hospital, my blood was withdrawn, and Lupus was confirmed. They started me on Prednisone and wow; I could walk, talk and eat within hours. And I did all that – it seemed a miracle! Of course, the doctors didn’t tell me about all the side effects of Prednisone – but I’ll chat about that in a later bog. For that moment, it was happy times.


The disease was arrested, but not for long. Over the following three years, I had three flairs and each time was progressively worse. The hospital stays were longer and the kidney involvement more extreme. But, after the third flair, the disease was arrested and I was on lower dosages of all medications.


Around that time, I went on a camping trip to Yosemite with my boyfriend and friends. We planned a 4-day trip, but we were having such a great time, everyone wanted to stay a couple of more days. The decision was mine, as I had not brought enough medication for a longer stay. I decided to take the risk. Honestly, I felt like this was the right thing to do from a spiritual standpoint.


About a month after returning from that trip, I had a doctor’s appointment. I had decided to stay off the meds and see what happened. My doctor was not happy with me, but my test results showed that I was in remission. I was lectured about what a risk I’d taken, but it just felt right.


From that Yosemite trip in 1986 until October 2008, I was in full, non-medication remission. YAY!


Now my goal is Remission2.