I’m still taking a break from the blog, but yesterday was 11 months so I thought I should put up a little update. I didn’t really talk about my 11 monthiversary yesterday or make a big deal about it. I remember in the early days, every month felt like an accomplishment. I think around 6 months, things started to change. Each month was another reminder that I’ve been entrenched in this for so long and I feel like I’m not getting better. I have made progress, but the pain I endure on a daily basis is really wearing me down.
I was talking to a friend yesterday about what it feels like to be 11 months. To be completely honest, I feel like I have wasted a year of my life. My friend reminded me of some good things that have happened to me. Most importantly, I got married to the love of my life. I don’t regret doing it one bit and I am so happy that we did it. But, at the same time, I have to look at the circumstances of why we got married. Around the time that the US Supreme Court decision came out, I suffered a pretty significant blow to my progress. We had been talking about having a wedding next year, because we were sure that in 2014 I would be through with my withdrawal. At about 8/9 months, it became pretty clear to me that this isn’t going to be ending anytime soon. So waiting for an indeterminate amount of time for us to start planning a wedding, while we are also suffering financially and bills are piling up, we decided that we should just do it now and we can always have a celebration much later in the future and we won’t have to stress out about planning a wedding. The circumstances surrounding our marriage were not ideal and I almost feel like we were denied the privilege of having our friends and family celebrate with us as a result of my health issues.
Now, for an update on my skin. I want to try to focus on the positive here. So, I am forcing myself to sit down and write about what has improved.
What is better
Baths: I generally only take one bath a day. The first 6 months I had to have at least 3 a day. In the first 3 months, I often had to leave work to take a bath in the middle of the day. The past 6 weeks or so, I have only had one bath on most days. This is a pretty huge improvement. I have started despising the bath, especially because it has been so hot.
End of the day: I don’t leave work in a scratching, crying panic. In the first six months, I stayed at work until the itching and pain was unbearable. Sometimes that was 4:00 PM, sometimes it was 5:00 PM. I would stay until I couldn’t stand it, and then would scratch myself into a bloody, oozy pulp in the car, sometimes crying and screaming at the same time. This was often the absolute worst part of my day and I would often end up at home with most of my clothes already off. I would often text C and ask her to start the bath for me so I could immediately jump into the bath.
Little to no ooze: Occasionally, I have small oozy spots. My upper back oozed for a few hours last weekend, but that has not happened in a really long time, and it didn’t last very long. I no longer wake up in the morning with my back stuck to the sheets or t-shirt. I don’t have to rip clothes off my skin. I can scratch my back pretty hard and not break the skin.
Shorter flares: Flares aren’t as bad as they were. I know when the telltale signs of a flare appear, that I will be ok in a few days.
Itch: I am still itchy. But, through a lot of the day, I can ignore the itch, or it is a mild itch. At night the itch is always worse, but some days are worse than others. The really bad itching is mostly during a flare and when I’m not in a flare, it is much more manageable.
What still sucks
Pain: I hate being in so much pain that it hurts to move. My skin is back to the dry to the bottom layers feeling. There are some days when sitting down, standing up, getting out of bed, twisting to put on my seatbelt, hurts so much, my body sometimes hurts so much that I convulse and I feel the pain vibrating throughout my body.
Overheating/Hives: I have been having outbreaks of hives in the morning, which appear to be related to overheating. Some days I am ok and I can handle some heat. But other days, I start panicking and break out to horrible itchy hives all over my upper legs, arms and back.
Nerve pain: The nerve pain/itch almost completely disappeared when I started taking gabapentin. I took 100 mg a day for about 6 months. I thought this was a really small dose because I was prescribed 4 100 mg capsules a day. Because my nerve pain had improved, I decided to stop taking the gapabentin. I had read about gabapentin withdrawal and that it needs to be tapered off. But I was taking one capsule a day, so I wasn’t able to taper down. I ended up having really intense emotions, feelings of depression, despair and worthlessness. I had suicidal thoughts and felt like I didn’t want to live anymore. I felt like I was living in a fog and I couldn’t get out of it. I have been off the gabapentin for about 3 weeks now and I am starting to feel normal again.
The nerve pain has also returned, which showed that the gabapentin was working. I had a really bad day last week when I got out of the bath and immediately had the feeling of thousands of needles all over my back, arms and legs. I was screaming and crying because the pain was so bad. Since that day, I have had nerve pain, but it has been significantly less than that.
Reflecting on all that I have been through, tt is impossible to imagine a life different than the life I have lived for the past 11 months. Simple things like being able to wear something other than the few “TSW clothes” I have amassed, or spending the night at a friend’s house, being able to wake up in the morning and hit the ground running, working out, standing outside when it is hot are all things that I can’t do and I haven’t been able to do in almost a year. I can’t imagine ever being able to do those things. I feel like I have almost resigned myself to this life forever.
I’m sure that this post is going to be discouraging to some of you. I’m at 11 months and you are expecting me to say that I am great, almost healed, doing awesome! But if I said that to all of you, it would be a bold faced lie. The truth is I’m starting to have doubts. I’m having a really tough time focusing on the positive and looking at the glass half full instead of half empty. I know deep down in my heart that I will heal. But my brain doesn’t believe it and is really testing me on whether or not I will ever get better and if I will ever be able to live a normal life.
I usually post a full body update, but I guess as a part of my “break” I am just going to share a face picture. I had a nasty fall on my birthday and ended up in the Emergency Room and had to get stitches, so if you notice some other stuff than TSW going on..thats what it is..
Hi everyone, As you have probably noticed, I haven’t been blogging, participating in the forums, or been around too much lately. I have been extremely overwhelmed, exhausted emotional, depressed, feeling worthless and unhappy. I’m probably going to be taking a little break from all of this skin activism to focus on my own healing and my family. If you send me an email or message and I don’t respond, that is why. I need to get myself healthy before I can help anyone else. I will be back in the future, but for now I need a little me time. I hope everyone is having a better day and not flaring too badly.