Life update – auto-immune disease, resolutions, video games, projects, and kitties
I’ve been meaning to write this since Christmas, but I kept putting it off, so it’s a little late. Haven’t posted in a long time, so it’s going to be long! Here’s a table of contents, just in case… Topics aren’t in any special order. Also I was writing the end in a rush so it’s not as comprehensive as I’d like…
After many, many doctor visits, I’ve learned that I have this random auto-immune disease called pemphigus foliaceus. My immune system basically attacks my skin, so if I don’t take medicine, I get blisters all over. It’s not curable, but it’s controllable.
In September, I noticed that I randomly started getting open wounds on my stomach. At first I thought it was the kitties accidentally clawing me when they slept on me at night, but as I paid more attention I discovered that I actually had blisters for a short amount of time, before my clothes rubbing against them would pop them. At the beginning they only appeared under my t-shirt line, so I thought I might be sensitive to our detergent or something, so we changed it and waited a few weeks but I still got the blisters. Around Thanksgiving I started getting a rash on my face too, so I finally went to the doctor.
Multiple visits, blood tests, and biopsies later, the dermatologist told me I had pemphigus foliaceus. Here’s a site with a pretty good description of it (it’s about the more severe version pemphigus vulgaris, but everything is basically the same except I don’t get sores in my mouth – yay, I guess): Pemphigus Vulgaris Network.
Basically right now I am taking a steroid medicine that has been toning down the blisters and rashes a lot. When I went down to the lowest dose I still got some new blisters, so I’m on a medium dose right now. I’ve been feeling some of the side effects, so it’s kind of messing me up a bit. I haven’t been able to sleep a lot lately as it gives me a bit of insomnia. The doctor said it may make me anxious – so far the only thing I’ve noticed is that on my regular drives to and from work, I sometimes start to feel like all the cars around me are narrowing in and boxing me in, and it freaks me out as I’m driving. Every once in a while the lanes just feel really really narrow and I feel like every car is inches from me. Also the medicine makes me gain weight :( I have to watch what I eat as it makes me really hungry, and even though I’ve been watching what I’m eating I’ve gained 10 pounds in the month since I’ve started the medicine.
However the steroid medicine is bad for you long-term, so I’ve also started a new medicine that takes 6-8 weeks to take effect. Hopefully this one is better – in essence it is turning down my immune system so that it doesn’t attack my body. I’ve always had a weak immune system so now I have to be really careful to eat healthier. I’ve been taking iron, calcium, and vitamin D supplements – I take 7 different pills in one day :( It’s interesting though, because apparently I had slight anemia due to low iron, so I was always tired and feeling faint. Lately, though, I’ve been feeling so much more awake and energetic – I never realized that how I usually felt wasn’t normal! I get up easier, have a lot more motivation to get things done, and feel so productive every day now. The only thing I’m not sure about is if it’s a result of my iron level being normal, or the steroid medicine – hopefully I am still as energetic (but with no insomnia!) after I get off the steroid medicine!
My dermatologist referred me to a dermatology auto-immune specialist at Stanford, so I will be seeing him soon just to confirm my normal dermatologist’s diagnosis and treatment. I have never appreciated health insurance before this. My dermatologist told me that before he referred me he had already pre-authorized the visit with my insurance, so I already know that it will mostly be covered. All the doctors I’ve seen so far (urgent care, normal family doctor, dermatologist, hematologist) have been in the Palo Alto Medical Foundation‘s network, and I am really impressed by how high-tech and efficient everything is. I gave my information once at the Sunnyvale center, and since then every time I go I just tell them my name and show my ID. The Mountain View center has just about every type of doctor in one building, and even the labs are there, so after my doctor visits if I need to get blood tests I just walk down to the lab. The doctors immediately send prescriptions to your pharmacy during your appointment, so as soon as I get home I can pick them up. They’ve also got this awesome online system where I can see all my upcoming appointments, send messages to doctors, see the results of all my blood tests, see all my prescriptions… Everything is so high-tech in Silicon Valley!
These resolutions are late, and I haven’t really started, but putting them here will push me to follow them:
- Eat healthier – more vegetables and fruits
- Exercise three times a week – Tuesdays and Thursdays at work, Sundays at the apartment complex gym
- Get back down to my normal weight (110 pounds)
- Eat out less – try to bring lunch to work more often
- Control my random bursts of spending sprees
- Be more aware of how much of my money goes to what
- Learn more – delve deeper into the new things I’m using rather than only dealing with the minimum
- Be more aware of user experience – it’s fascinating!
- Collaborate more with other people – talk in person rather than IM if possible
- Speak up more with my thoughts and ideas
- Take useful classes that become available
- Work on projects more consistently! Don’t just start them and forget about them for a few years
- Keep up with crafts projects
- Start more technical projects, especially related to web development
- Keep track of project progress, optimally here on Bacon Fried Rice
- Be more productive, do chores more willingly, resist the urge to just lay on the couch and read articles on my phone
- Follow a weekday schedule so I don’t get lazy and do nothing when I can’t decide what to do. Tentatively:
- Monday: Video games! EDIT: and reading
- Tuesday: Crafts project (probably finishing my cross-stitch projects)
- Wednesday: Technical project (discussed later)
- Thursday: Do something with Jack (play games or do a project or something)
- Friday: Free choice
I’m still playing Arkham City right now. I like it, and it’s usually the type of game I really like to play, but for some reason I just can’t really get myself to finish it. I think it’s because it disturbs me. The villains are terrible. I want to just get it over with so I can finally play Assassin’s Creed Revelations.
Uncharted 3 was awesome, but kind of short. Also the ending was very anti-climactic.
I got a DOTA2 key, so I started learning it and playing with Jack. I suck though. Also Jack apparently logged into my Steam account and gave away my two extra keys without telling me -__-
I need to find other games to play with Jack too, I can’t see myself being able to play multiple DOTA2 games in a row without getting bored… We played the Uncharted 3 local multiplayer but now that we finished it it doesn’t have much re-playability.
I’ve been neglecting my projects a lot. I have two categories: crafts and technical.
In terms of crafts, I usually do them with a purpose (cards for people’s birthdays, holidays, etc.) so I guess it makes sense that I haven’t been keeping up with them. However when I was going through my boxes of junk I discovered more than five very large cross-stitch projects that I’ve either started very little of or haven’t started at all. I’ve decided I’m going to focus on those, so my Tuesdays are going to just be cross-stitching. Right now I’m working on one of kitties in a window that I started for Jack two years ago – I wonder how long it will take me to finally finish it!
For technical projects, I’ve decided to pick up web development again. I’ve always been interested – taught myself HTML from a book in fourth grade – but it kind of died off once I got into high school, and all of the programming I did in college wasn’t related at all. However due to some of the stuff I’ve been doing at work my interest has been rekindled – I’m going to write about this in a separate post later so I won’t go into detail here.
I’m in a rush and have to leave so I will just leave with a short note about the kitties. They are still awesome, Jokulhaups is big and heavy and too smart. He figured out how to open all the cabinets so now we have to Velcro them shut. Dragon is so much tinier than Jokulhaups! She loves to snuggle now, every morning she comes up to Jack and asks to be let under the covers. She used to sleep on my pillow every night but I guess snuggling with Jack in the morning was warmer :( She loves sitting with me when I’m at the computer though, so I guess that makes up for it. Here are two kitty photos before I go:
Jokulhaups would like a belly rub please
Dragon says Mini Panda is snuggly and warm