Hello fellow skin warriors and supportive allies,
I hope everyone is having a good or tolerable day. I’ve been a bit MIA – things were really crazy here this past week. I had a ton of work to do and I was pulling 9 hour days at work, which is something I haven’t done in months and something I’m not supposed to do. I got extremely stressed out on Friday and it is showing on my skin.
My skin has been in a semi-flared state for a week or two. It is something I can live with, but it is not ideal.
Yesterday was the ITSAN Reception for Jonathan Root, the new Executive Director. Kelly Palace, the founder, was also present. Dr. Rapaport came as well, and there were probably 10-12 people who have gone through TSW, or are currently going through it. We had two newbies, one 4 weeks in and one 6 weeks in. We had people who are long term users who are still struggling after two years. I met a 75 year old man going through TSW who used steroids for most of his life.
I was overcome with emotion and cried quite a bit. I don’t know what happened.. just something about seeing people who are in the beginning stages just kind of set me off. Even thinking about it now is making me cry. Life is hard enough without having to deal with a seemingly benign medicine that throws us into absolute hell.
Although it was emotional, it was empowering and inspiring to meet other people going through this. I have met a few other people, but this was different. Sitting in a circle with people who look just like me, telling my story, and being motivated to stop the abuse of steroids really struck me. I am still reflecting on this as I was in a lot of shock after I left the event last night. Maybe I can write a little bit more this week.
On to pictures and video!
Kelly Palace’s husband Mark made this video of me. It is short and sweet and to the point:
Here are some crappy pictures I took of myself this morning. C is still asleep and I didn’t want to do what I usually do and wake her up to take pics of me!
So the purpose of this blog is to document my progress throughout topical steroid withdrawal and also serve as a resource to people who believe they may be addicted to topical steroids. But, I’m going to use my blog to talk about something really important to me. That thing is marriage equality.
If you read my blog, you can tell that I am gay/queer/lesbian. I have a girlfriend who I have been with for almost six years. We live together, have two dogs together, and I consider her my partner. She has been my primary support throughout this hell of TSW. She rubs my back for hours because it helps with the itching. She sleeps in a bed with me even though I stink, ooze and shed all over the place. She scrapes my dead skin off the side of the bathtub. She cooks my meals for me and brings them to me in the bathtub. She sits on the floor in the bathroom and eats her meals with me. She washes my disgusting, skin covered clothes. She got two extra jobs to help make ends meet while I work part time. She has been on board since the beginning and has supported my decision to not use steroids.
So, why aren’t we married? We live as a married couple. We have joint credit cards, a car loan in both of our names, joint car insurance. Well, in the State of California, gay marriage was legal for about 5 months in 2008, and then a ballot measure took that right away. More than 50% of voters in the 2008 election voted that gay people should NOT have the right to marry.
For a long time I was against marriage for a number of reasons. I thought it was silly for LGBT people to try to emulate heterosexual relationships and norms. I thought (and still think) marriage is an institution rooted in sexism. I still believe that marriage is not the issue that the LGBT community needs to focus on. Legalizing gay marriage isn’t going to stop kids from being bullied, committing suicide, or being kicked out of their homes. It won’t stop the discrimination and violence that many transgender people experience. And it won’t help bi-national couples seek immigration status. For a long time I said I would never get married.
But, going through this experience of TSW, being completely helpless and seeing that someone loves me enough to take care of me and support me the way C has done, it really made me wonder.. why aren’t we married? So, I guess my views have changed. It occurred to me that C is not “just a girlfriend.” Someone who is “just a girlfriend” probably wouldn’t feel so dedicated to taking care of me. And I think she knows that I would do the same thing for her. We are a partnership that is very similar to those of my heterosexual friends.
So people out there, remember that love is love and that is really what matters. I’m really sick of hearing people justify being anti-gay by saying that they still love me, they just don’t agree with my “lifestyle.” This is not a lifestyle. This is MY life. And people who pretend to like me and be nice to me and say nice things to me and C about our love and our relationship, but then turn around and say that gay people are living in sin, going to hell, converting their children to the homosexual lifestyle..well you guys can take a hike out of my life.
Thanks for reading and I hope everyone has a great day!
In 11 days I will be in the 200s. Everytime day, week, month, etc. I cross off is one day closer to healing.
I’ve been having a pretty good week. My skin has been scaling and shedding a lot. It seems like the areas with the lichenifcation are starting to shed off like crazy. There are spots on my legs and arms that have very thick dry skin. Every few days, these spots crack and get giant thick scales that shed off. Sometimes they are really small scales, but they are shedding a lot nonetheless. My back is starting to cycle, rather than be bad all the time. I didn’t get a picture this morning because C was still in bed :).
Bare minerals seems to be working out. The only problem is that my skin is really dry so if it decides to scale and shed, the makeup looks really bad. This is mostly a problem with around my mouth, which is constantly scaly.
I do have some potentially bad/scary news to report though. I noticed the smell of my skin/the ooze that comes out of my back had changed to a fruity smell. I googled it and apparently this is a symptom of diabetes. So I am going to get some bloodwork done next week just to rule it out.
Anyways, I am looking forward to the weekend. I’m going to get some sun, exercise and rest!
It’s so funny, big things usually happen after my morning updates. Sometimes I feel compelled to post twice in one day!
So, I’ve heard from some itsan members that bare minerals is a good makeup for tsw. It is made of natural ingredients and can help even out the color of the skin. I would never have tried makeup in the earlier days, but now that my face is getting better, and there is a bare minerals right next to work, why not give it a try??
Here’s the result! Before and after:
Compared to earlier today, I think I look a lot better! It does make my skin look a little dry up close, but I think that is OK. I’m excited about this! No itching or burning yet. We will just have to see.
C just took a picture of my crazy looking bath. This is what it looks like coming out of a flare an at the end of the day. Crazy isn’t it?