I know I haven’t fully disclosed what is going on and why the chemo and all the other rehab and hospital visits. It is really, really hard for me because it is the most frightening thing I have ever had to deal with in my life. So to say it out loud (or blog it) is a tough one.
I was first diagnosed with lupus when I lived in Spain. My symptoms at that point were the occasional swollen hands or fingers turning blue when it was cold. All things I could and did live with for a long time with no other symptoms.
When I moved back to the US a few years ago to start Grows Up everything changed. My beautiful long hair started to fall out in clumps. I started getting random red spots on my body. It was pretty horrible stuff and very stressing.
I went to a rheumatologist at UCSF and we began this long path that got slowly and progressively worse.
First Hospital Stay – Transverse Myelitis
In June, after months of fighting random fevers, rashes, extreme fatigue, urinary issues, etc… I finally ended up in the ER. This kicked off a 2 week stay.
During that stay I collapsed on a nurse when I was walking down the hallway. My legs had given out. I could basically barely move and everything from the waist down was numb and tingling.
This turned out to be transverse myelitis something that is rare (only about 4 cases in a million reported each year), but also very devastating for many people.
It is a neurological disorder caused by inflammation across the spinal cord. When it finally sets in it causes some type of paralysis. In the very extreme cases it travels upwards shutting down the ability to breath making people paraplegics. Thankfully I was lucky and everything was from the waist down.
I was diagnosed, release and began to try to rehab. I went quickly from not walking, to walker, to cane and the numbness began to subside a bit.
At that time, the doctors decided that I should do a course of chemo to really put the lupus back in check. The chemo would be followed by another immunosuppressant drug called CellCept that I will continue on with.
Second Hospital Stay – Brain Seizures (Frontal vs Temporal Lobe – The Battle for Control)
Then at the end of July, I woke up one night and was frantic. My mom has been staying with me since June because I am too weak, tired or mentally confused to do many things for myself. I couldn’t get back to sleep that night and ended up calling an ambulance in the morning.
Another week spent in the hospital and this one was much much worse than the first one. I don’t remember most of it.
The doctors were stumped as to what was happening to me. I had about every team in the hospital trying to figure it out. Cardiology, neurology, rheumatology, psych and more visited my room twice a day. I had MRIs, CAT scans, blood test for everything (including ebola). Still no one could figure it out. I am told that I didn’t sleep the entire time.
Finally, they concluded from an EEG (brain monitor) that I was having severe brain seizures of the frontal and temporal lobes caused by the lupus. I was put on a medication and within 30 minutes I was coherent again. And scared to death.
I hope to never experience something as scary as losing my mind again. I had moments during that week where I would be coherent and know that something was going on and all I could do was cry because I was so frightened. Thankfully I had my mom there the entire week. I can’t even imagine how scary it was for her to see me go through all of that. Mark would come and relieve her during the nights and just hold me and reassure me while I cried and cried. Words can never express how grateful I am to both of them for comforting me that week and still.
I’ve been out now for a few weeks and faithfully taking my anti-seizure medication. At first it caused confusion, but now it seems to be mostly regulated in my system. I am still weak and tired, but getting better every day especially with the help of my family and friends. My new job has been amazingly understanding and I am also grateful for them.
All of this has been emotionally traumatizing, but I am finding the positives in it. I really do appreciate so much more than I did before. I look forward to a bright future that involves a lot more love and a lot more interesting things. But not to worry, I will always have that bitchy Nerdgirl charm to throw at you.
And, by the way, I’m not listening to Nickelback for inspiration.