Sorry I’ve been absent… I’m in San Francisco for my annual legal conference. Things are very exciting here with the DOMA and Prop 8 Supreme Court decisions and immigration reform passing in the US Senate. It is also San Francisco Gay Pride this weekend and I’m sure there will be huge celebrations! Sorry to my skin friends outside of the US… I’m sure this is boring and not relevant to you!
C and I decided to get married a few months ago. But how do I plan a wedding when I’m sick? And how will we pay for a wedding? I’ve taken quite a bit of unpaid leave (I think bout 6 weeks) and I am still not even considered full time at work because I only work 30-40 hours a week, rather than 50. So money is tight and weddings are expensive. But with marriages resuming at the end of next month.. I wonder… Should we bite the bullet and have a cheap wedding with me covered in rashes? Or should we wait until next year? Should we get married at the courthouse and have the “wedding” next year? Sigh.. so many decisions. But hey! The fact that I’m worried about something other than my skin is a great sign!!
Enough about silly things like gay marriage 🙂 Let’s talk about my skin. I started gabapentin a few weeks ago for my nerve pain and I think its working. I had a short 2 day red flare on Sunday/Monday. On Tuesday, I started feeling better than I had in weeks. My bad spots are still bad (sides of back, chest neck, hands, feet), but I felt as close to normal as I have in a while. I’m still taking vicodin on a daily basis, which is not great, but I have to do what I have to do. Maybe if I didn’t have to work, I could go without, but the pain in the worst spots is still pretty bad. I look more normal than I have in a while, which is great because I am trekking around San Francisco while it is HOT and I am walking/taking public transportation. I have been SWEATING pretty normally when I get hot. When I get hot, I feel a little itchy and a little tingly, but its not too bad. I had dinner last night, had some beers, and I didn’t get too itchy. I feel GOOD AND NORMAL (relatively) about 50-60% of the day, and so-so(relatively) the remainder of the day. I am also ONLY ITCHY ABOUT 20% OF THE DAY! This is huge!!! I hope it lasts. But as we know… it can all come crashing down at any minute.
Anyways, enough of my rambling! Sorry only one crappy picture of me! I’m actually writing this in a conference session, instead of paying attention! Will work on taking more tonight when C joins me!
Here we are, another week, another day, another hour down. My mom came into town this week to help out because that nerve pain really knocked myself onto my knees and I needed some extra support.
Skin is doing better.. ooze is down, nerve itch/pain isn’t 24/7 at a 10 in intensity. Pain/itch is at about a leave 5-6 most of the time but still is about an 8 at night.
I also wanted to take a moment to talk about why I am doing this. Why have I made a decision to make a public blog discussing what I am going through in very great detail? Last week, I got my first hateful comment from a complete stranger. It really upset me. I don’t know why it upset me so much… I usually handle that kind of stuff well and usually would just let it roll off me. She basically called me an attention whore and told me that I need to keep it to myself and my family. She also said this is the same as blogging about IBS.., so my pictures look like shit??? So, I have been thinking about why I share so much with the world. here are three reasons I blog about my stuggle with topical steroid addiction and withdrawal/red skin syndrome.
1. To raise awareness. I’m sure that this woman who left me a nasty comment will NEVER overuse topical steroids on herself or her children. If she found my blog and pictures to be disgusting, I am SURE that she won’t smother superpotent steroids all over her face, baby, etc. (Also, let’s remember that many people going through TSW were relying on their doctors instructions to ignore the warning label and that it is “safe enough for a baby!”)
I want to raise awareness about TSW so people will stop overusing and abusing steroids. I want to inform people about TSW/RSS so that they will be able to make informed decisions when they have a rash and go to the dermatologist and receive topical steroids. I want my pictures to pop into their mind as they get the prescription, fill the prescription and use the topical steroids. I want my friends with children to think twice before using topical steroids on their babies. I want my friends who are in medical school or are new doctors to think about me before writing a prescription for topical steroids for a mystery rash.
2. To share my experience with other sufferers. Although awareness about TSW/RSS is growing, it is still not recognized by many people in the medical community. I am in the very small percentage of sufferers with access to a supportive doctor (and I see the MOST supportive doctor!) People are very scared and alone and only have the ITSAN resources to get through this. There are a lot of scary symptoms and a lot of fear in the beginning because things take a few months to reach their worst. And then there are late flares to deal with. There are a few early bloggers that posted tons of pictures and detailed information that really helped me. I have found the blogs with pictures to be the most helpful because seeing the symptoms on others is an important part of understanding the healing process. That is why I force myself to put these pictures up. Does anyone really think I like having pictures of my oozing, shedding, red face?? Of course not!! I’ve come a long way in dealing with my vanity.. but I’ll be honest.. some of the worst pictures are on my phone and have never been shared. Maybe some day I will be brave enough to share.
3. To track my progress. When I start feeling frustrated with my lack of progress, I open up my blog and read blog entries from the early days. Sometimes I read blog entries from two months ago. There are days when I just feel so damn depressed and stuck. Sometimes things are so bad, I just can’t see out of all the shit. I forget how far I have come and sometimes I need a little reminder.
Anyways, I hope this explains a little bit more about my motivation behind this blog. YES I AM SEEKING ATTENTION!!! I am seeking attention for ITSAN and the harm that topical steroids do on the body.
Here are the pics. Look at how lovely my back looks! It hasn’t looked this good in weeks.
The past few days haven’t been too great. I’ve had the most intense nerve pain. On Saturday and Sunday mornings, I got out of my normal morning bath to insane pain. It felt like someone has a big needle with an electric current and they were stabbing me all over with it. At the same time, it felt like my bones were itching and if I didn’t scratch, the pain would intensify. If I did scratch, I would go into a euphoric state… Sometimes my arms and legs would start convulsing.. Kind of like a dog when you scratch his itchy spot.
The funny thing is… My skin doesn’t look too bad. It looks pretty good actually. Even my back, which is the main place with this insane nerve pain, is just a little red in the itchy spots.
I stayed home from work yesterday.. Which is something I haven’t done.. Except when I was hospitalized and when I took time to go home and be with my family. I’m going to try to go in today and see if I can at least put in a few hours of work.
Anyways, I leave you with this picture of me with my little TSW companion. She knew I needed some extra love and rarely left my side this whole weekend.
Today I am 9 months off steroids. That is 39 weeks! I could have had a baby in that time. I haven’t flared in a few days and my skin looks like it is back into the “healing” stage. Progress is being made, albeit slowly and with lots of set backs.
My worst spots continue to be my neck, chest and upper back. My not so great spots are my hands, wrists, ankles, and feet. My stomach, legs, arms and face are pretty good though. My symptoms are improving – the itch is settling down quite a bit. I’m oozing only in my bad spots- a tiny spot on my chest and a few large spots on my back. My back is still swollen, but the swelling is going down.
This last month has been rough. But here I am, still going strong. It hasn’t been easy. On almost a daily basis, I have to dig deep and bring out the fighter and survivor in me. Everyday when my alarm goes off, I have to brace myself for the pain of sitting up with skin that is so dry that it is ripping apart. When I’m having an itching attack in my office with the door closed, and people are knocking because they need to talk to me, I have to take a deep breath, put my clothes back on, calm myself down and move on with the day.
I know that my last post may have rubbed some people the wrong way. My purpose in writing it was to show other sufferers my experience and suggest some ways that loved ones of sufferers can help out. I have had some great people supporting me in my withdrawal -namely my parents and my partner. There have been some really great friends in the mix too. The message I have gotten from other people going through withdrawal is that this process (as with any illness) shows us who our true friends are. Who is a good friend? Who is someone I can count on? I know now who I can count on when I’m at my rock bottom.
Thanks to those of you who have been great friends to me and have supported me. It really means a lot to me- more than you know!
Anyways, here are the pictures. I am a little red in these pictures for some reason.. more red than in real life. So I added two pictures of my arms yesterday to show what my skin normally looks like.
I have written about the strain that TSW puts on relationships. I want to revisit the issue because as I progress in my journey, this issue continues to be important.
I am not from California. I am actually from the South and my whole family still lives there. I went to college and law school in California and decided to stay. My friends are spread out all over the country. Because I went to college and law school here and decided to stay, many of my friends have come and gone. The past few years has seen a sort of exodus – a large percentage of my friends have moved away for grad school, jobs, etc. So before my withdrawal, things had already been changing, with friends leaving the area, and becoming removed physically and mentally. C’s friends are mostly still here, but she is from a suburb about 45 minutes away from the city and the majority of them don’t want to make the drive to us. In the past, we usually drove down there 2-3 times a month, but with a 1 1/2 hour travel time, the clock isnt left with much time to actually socialize.
Add topical steroid withdrawal on top of all of that, and there has been a huge strain on most of my relationships. Many people have disappeared from my life. In the early days, C posted on one of the forums asking if anyone else had experienced something similar. We felt so alone in those early days because most of our friends really just weren’t there for us. It was interesting- there were people on the forum who said that the support from friends and family was overwhelming and that they were kind of irritated by it. That has not been our experience, and to be honest, except for a few exceptions, the people we thought were closest to us have faded away. The other day, when I had my breakdown and was home alone crying in the bathtub, I scrolled through my phone for someone to talk to. I felt like there was no one there for me to talk to. I wonder if this is how other people feel? Or is this unique to my situation? I don’t have someone to call when I have the panic button. I ended up texting my mom and my doctor because those were the only people I really felt like were there for me.
Here are some examples of things people have done/said that are NOT supportive:
· A friend who won’t talk to me because I won’t take all of his/her advice regarding diet and supplement
· A friend who refuses to read my blog because it is “too sad”
· A friend who said my blog is “disgusting”
· A friend who won’t look at me when they see me in person
· A friend who didn’t respond to my emails or texts during my withdrawal
· A friend who refuses to accept that withdrawal is horrific and that my life is affected in every way, making me unable to participate in any social activities
· A friend in medical school who has flat out refused to accept that I am going through topical steroid withdrawal.
· I asked a friend to take care of C when I was with my parents, too sick to even be at my own home, and they just ignored me.
· A friend who immediately moves to the other side of the room when I come in.
. A friend who tells me I should go back on steroids.
. A friend who tells me that it was my choice to go off steroids and that I asked for all of this.
On the other hand, some of my friends have been great. I have friends who check up on me if they don’t hear from me for a few days. A few friends came to hang out with me at home when I was too sick to do anything but sit on my spot on the couch and barely even get out a smile. Those visits, albeit few and far between, meant so much to me.
So, here is a list that I think represents what a good friend should do during withdrawal:
1. Yes, we know we look bad. You don’t need to stare. But we can also tell that you are refusing to look at us when you are talking.
2. Text/email/call us once a month to ask how we are doing. Sometimes we can’t talk on the phone because we are crying or our ears are oozing, or we are only comfortable in the tub.
3. Offer to bring over food or walk the dogs or help out in anyway. You only really need to do it once. If every friend offered once, think about all of the support that adds up to! We promise we will return the favor when you are sick. We have been in the pits of despair and we know how we would like to treated and how we will treat others when we are sick.
4. Don’t get upset if we can’t make it to your party. Trust me, we don’t want to be sitting at home in the bathtub right now. We want to go out. We want to be normal. But we have limits on what we can do and sometimes we just can’t handle getting out of bed/off the couch/out of the tub.
5. Take the time to research a little bit about what we are going through. Maybe take 30 minutes out of your day to research TSW, symptoms, etc. It is amazing how few of my friends/loved ones have done this. Actually, less than 5 come to mind.
6. If you can’t handle doing anything above, call the caregiver (parent, partner, etc) and give them some support. Take them out to dinner. Offer to stay with the sufferer to give them a break. Caregivers take a large part of the brunt during this. They have to keep up with massive amounts of laundry, vacuuming, bathroom cleaning, Walgreens trips, cooking meals, bringing us things in the tub.
7. And last but not least, please be kind. We need kindness and love and support because what we are going through is horrible. It is horrible and it isn’t even recognized by many people, so it makes it that much harder to explain and deal with. Think about how you would treat any of your friends with a serious illness.
It is no secret that I haven’t been at my best lately. I was really bummed that I was going to miss out on one of my favorite activities.. Marching in the LA pride parade. Somehow I woke up yesterday morning rearing to go, took a quick bath and went to the parade.
It was fun! I had a great time. It wasn’t easy.. It was hot and sunny and my neck was bothering me a lot. But I just took breaks, tried to stay hydrated, and stood in the shade whenever possible.
I’m so glad I went! I’m sure I will pay for it- yesterday evening wasn’t great and I’m sure ill have some kind of a flare this week. But if that is the price I’ve got to pay, I’m pretty sure it is worth it!
Next week I will be nine months off steroids. I’m experiencing a full body withdrawal and I fit into the category of severe/bad withdrawals. It has been hard for me to accept that, but here I am, saying it loud and proud! I don’t have a particularly lengthy usage history, maybe 5-6 cumulative and mostly OTC hydrocortisone. However, my last 8 months of using steroids, I had two prednisone tapers and used about half of a big tube of clobetasol (the strongest topical steroid) all over my back, hands, and neck. I stopped using steroids when I was on a cleanse in August/September and my skin blew up. I caved and used TS a few times. Then I found ITSAN and the rest is history.
Mentally, I have tried to be so strong for everyone around me.. including my family, my partner, my work, fellow sufferers, etc. I have felt like if I could just focus on making sure everyone else is ok, I will be OK. Focus on the greater good, focus on other people healing, and I will follow suit.
The problem is that my emotions boil over and I explode. I keep putting a top over the pot and it gets closer and closer to boiling over. And then finally, the heat is just too hot and I explode. There was that incident in April when I was driving to court and cried for days straight. I had that incident on C’s birthday inside the cupcake shop.
It seems like when I have that boiling over, I need to retreat. I don’t feel like talking to anyone and I feel so drained. Supporting others becomes impossible. I usually get obsessed with a TV show and watch every episode. In December, I watched the first half of Mad Men and finished it when things got bad in April. When I finished Mad Men, I moved on to Nashville (so good, but SO BAD). And now, I am watching Scandal. Engrossing myself in dramatic TV seems to help keep my mind of stuff. Focus on the drama and intrigue and I will forget about my skin.
Anyways, I’m not sure what the point I am trying to make. Maybe just to share how I’m feeling and express that it is OK to feel down once in a while. What we are going through sucks and it is hard and sometimes we are allowed to just sit and wallow. We can’t be strong all the time, as much as it pains me to say. I have received a lot of really nice comments from folks thanking me for being candid and sharing my story. I am so glad that my pain and suffering can help others. Being honest and open with the world about something so painful, disfiguring, etc is hard. Sometimes I wish that I could just suffer privately, but I remember that this is about changing the way that skin problems are treated and that I made a decision to use my pain and suffering to effect change. I also wanted to reach other sufferers and be really honest about my struggle, so others know that they are not alone.
Here’s another face picture. Please excuse my insane looking hair- I’m dealing with the horrendous growing out stage! Will work on some body pics (sounds much racier than it is!) this weekend. Happy healing friends!