I know that I haven’t been writing on here for some time and for good reason.
I have just returned from a fabulous journey to the hospital for the past 2 weeks. And was terribly sick a few weeks prior to that.
As it turns out, I had a virus. We still haven’t figured that out, but it consisted of fatigue, high fevers, mouth ulcers a rash on my hands and feet. The doctor put it down to hand, foot and mouth disease and sent me home. Sadly everything got so bad that I ended up having to take myself to ER where they immediately put me on IVs and other things.
The hospital and doctors at UCSF were completely confused by what was happening. This ended up with me being quarantined and a million tests being performed, including bone marrow biopsy, spinal tap and a tons of other stuff.
Eventually they figured that the virus had gone. They couldn’t treat anything for lupus until that was gone because any drugs would make the virus worse. So they started treating me aggressively for lupus with high doses of steroids.
Finally, I am out of hospital and at home with an aggressive medication routine. I also got some infection in my spinal cord which means I can only walk with a walker and have 24/7 homecare of friends and my Mom is coming this evening. Oh and I have home physical therapy a few times a week.
I guess that is the update. I’m doing ok and am just looking forward to fully recovering.
Thanks for everyone’s thoughts and wishes, it means a lot. 🙂
BTW, you never want to hear a team of doctors tell you that you are one of the most interesting cases they have ever worked on. And side note, the UCSF teams were awesome. I had internal medicine, rheumotology, neurology, dermatology, infectious disease all working on my case. I’m pretty sure they saved my life.
Update as of Sept. 15th
Reading back on this post I realize how little I knew about the condition I left the hospital with. I think that when I wrote it, I didn’t even know the name of what I was diagnosed with. This could be in part to the doctors lack of explanation to me or that I was on painkillers and don’t remember a lot of my hospital stay. At this point, I am actually disappointed that I had no real explanation of the severity of my issue. Pretty fucking scary if you think about it.
What is actually turned out to be was NOT a virus. It was not hand, foot and mouth that my rheumatologist sent me home with. It was my lupus. In addition, the “infection” of my spine that I talked about turned out to be a pretty rare and serious disorder caused by inflammation of the spine called transverse myelitis. The inflammation was caused by my lupus as well.
The actual way that I was diagnosed with the transverse myelitis when I was in the hospital was when I tried to go for a daily walk and collapsed on a nurse. My legs were just not working anymore. Had I known now what I know then, that paralysis is a big part of TM, I would have freaked the hell out. So, sometimes, ignorance is actually bliss.
And while I do give credit to the doctors at UCSF hospital, I can’t help feeling like I was largely ignored by some of my regular doctors. Certain symptoms had gone on for months and months with no real action despite me having voiced repeated concerns to my specialists. Admittedly, it was not a cut and dry case. Nothing in lupus is. But I do believe that more could have been done to potentially prevent or minimize some of the damage that has happened. Maybe that is me looking for someone to blame. Damage is done at this point, so the only thing to do is move on and get better.
