Today marks the 11 week mark. I hate to jinx anything, but I’ve been feeling better the past few days than I have in probably 6 weeks. I’m sure things will back track, but that is ok. I’m feeling like I can get through this.
I’ve been walking the dogs with C (which she really appreciates) and have been more mobile. Yesterday, I went downtown to a meeting and attended an interview with a client. This morning I took a shower! Yes a shower! I didn’t have to spend 30 minutes in the bath scrubbing off crusty piled up skin. I’m less red, but very itchy.
I saw my GP this week. It was a pretty traumatizing experience. I was expecting a battle as I have tried to convince her that what I am experiencing is steroid related. She hasn’t seen me since I went red on 90% of my body. She begged me to use Elidel on my “bad areas” because I’m going to get infected in the open wounds. I repeated that I am not interested in smothering something all over my body that causes rebounds and has a black box warning for cancer! She took my blood to check if everything has bounced back since the pneumonia. She also felt my lymph nodes and might want me to get some biopsied. She doesn’t think my rash is related to steroids and that I am having an allergy to something.
When I gave blood, a crowd of nurses surrounded me, shrieking at my arms. They were yelling at each other, “Hey! Come look at this! You’ve gotta see this!” and asked me “What is wrong with you?? What is that?” It is the first time I have felt like a spectacle in all of this. It was extremely embarrassing and I was humiliated.
I feel so powerless when I have someone ask me what is wrong. I don’t feel like i have an easy way to explain it. I just start stumbling with my words, uhh steroids… uhh.. uhh.. My boss told me how she explains it to people and it is beautiful. She says “Leslie had eczema. She was exploited by doctors and was prescribed really strong steroids. Now she isn’t using the steroids and her skin is reacting.” So simple.
Anyways, here are some leg and arm pictures I snapped today.
Today I want to focus on the positives. I’ve been feeling so down and negative and I feel like I should try a different approach.
The good news:
1. My legs/ankles/feet haven’t swelled in almost a week! That is very good progress. That is a very painful symptom.
2. My armpits are starting to heal up a bit. I’ve been cutting myself up a lot lately and a lot of the bending areas are splitting open. It is just crazy how fast the body heals itself. I will have a big cut from scratching or something will split open and it will be bad for a day or two and the next morning I will wake up and it will be gone. Just like that.
3. My mom is coming next week to help out, which will give C a much needed break.
4. I’m losing hair on my armpits and legs. While this is kind of a bad thing, I’m looking at it as a positive. No shaving armpits for a while!
5. I’ve been shedding like crazy. The positive of it is that hopefully I’ll be getting another break soon.
6. I didn’t ooze too much last night! barely at all from my neck and just a little from behind my ears.
7. I think the chills are getting less severe. I haven’t used my space heater in my office in two days and when I get home from work (after my bath) i sit on the couch in a tank top and thin sweat pants with a blanket over my legs. The fact that I can wear a tank top and not be freezing is remarkable.
Things are rough right now, but I know that they will get better. I’m lucky this isn’t terminal. I know that I will be much better soon, probably in a few months.
So there is my positivity for the day. This morning was particularly difficult but trying to focus on the improvements is making me feel better.
On Friday I passed the 10 week mark. After having some progress, I seem to be backtracking and entering another “flare.” (Im not really sure what flare means anymore as in tje beginning i had good and bad, but now theres all bad no good). The past three days have been very red and very oozy. Last night before I went to bed my entire bottom half was soaking wet. It got continuously worse throughout the night. My armpits have split open in about 6-8 places on each side. My left armpit is pouring out ooze. There’s a foot long stain in the bed around my shoulders and left armpit. The ooze is definitely the worst part right now. The good news is that it seems like the ooze periods don’t last forever.
My ankles haven’t swollen up in two days! That is good news.
I had Thursday off for thanksgiving and only worked a half day on Friday. So I’ve had some time to rest during this nasty flare. It seems like I was getting half day breaks last week when I was feeling better. I’m hoping those breaks will get longer and longer.
It has been a little under a week since I last posted. I feel like I need pictures or video to share on here or it doesn’t make sense to post. I tried to make a video but for some reason it cut off in the middle. I promise I will make one soon.
The last week has been really rough. I have acknowledged that my previously positive attitude has since left the building. I’m left with depression. Chalon says I rarely smile or laugh anymore. My mouth is usually pulled tight, as my whole body is contorted into a weird position, trying to hold in all of my anguish. The mental part of this is certainly much more difficult than the physical.
I think I’m depressed. Last night I went to a friends house for a dinner party. They had not seen me yet- since things had gotten bad. I didn’t feel well, but I tried to sit there, with my hands clasped together, in my coping stance. I just want to feel normal again. I have to remind myself that I will be normal again. I just can’t wait to get to the stage where I am able to continue living my life.
So, an update on my skin:
Still very red, from head to toe. I’m in a lot of pain- my skin is so sore that clothes touching it hurts. My leg swelling isn’t so bad. After a day at work, they are a little swollen, but quickly goes down once I sit on the couch with my legs up. I’m still very dry/shedding all over. There is a part of my forearm that looks normal every few days. So that is exciting. The ooze is still a problem. Still bad from behind my ears, my neck, chest, stomach, back and groin. This morning I was still wet when I woke up. It is the worst feeling. I sleep with a towel around my neck to soak up the ooze and when I wake up it is stuck to my neck and ears.
My face hasn’t been great. I have some oozing/red areas. And it is just so dry. I am constantly moisturizing my face during the day. Once I get home from work, I don’t bother and when I look in the mirror before bed, I am shocked by how dry my face is.
Sleeping seems like it is starting to be a problem. This is a classic TSW symptom. Many people report an inability to fall asleep until 5 AM, I have been falling asleep around 1, but wake up around 2:30 and can’t fall asleep until 4.
My itching also seems to be much worse. I don’t think the antihistamines are working anymore. I’ve been upping the doseage, which seems to help, but the pills only last a few hours.
Anyways, here are a few pictures. They aren’t too great, but I just shot them in my office.
Right shoulder shedding/elephant skin
The past few days have been rough. I’ve been in a lot of pain. I also have started shedding like crazy. I haven’t seen the skin come off quite like this. On Sunday, My skin on my arms started peeling off like crazy, in huge pieces. Yesterday was the most painful day I have had so far. And I had a last minute motion at work so I had to work through the pain. Last night my neck, shoulders and back started shedding like crazy. This morning it was my calves.
Arm shedding on Sunday.
Both Arms on Sunday
My back last night. (I can’t figure out how to rotate in WordPress.. I’m a newbie at this)
My face is looking a lot better- just a little pink and a little dry.
Anyways, today I am feeling better than yesterday. When I am shedding, it is so hard for me to not pick the skin off, I feel like I just have to get it off so I end up taking pieces off that arent ready to come off. And I got a little lazy with cutting my fingernails.. I didn’t cut them for a few days, so when I was scratching, I was doing some damage.
Tomorrow marks the beginning of my 3rd month. Hopefully it is no worse than the first two and I either get better or stay the same.
Today marks 8 weeks since my official withdrawal from steroids. Yesterday was a bad day, I ended up leaving work at 4:00 and sitting in the bath for an hour. Today I am very uncomfortable. My skin is really red on my stomach and shedding.
My mom e-mailed me some pictures this morning that she found. This first picture is from September 2011. I was in the grand canyon (the less traveled north rim- if you have a chance you should definitely go there, it is really cool!) This is before the mess with the allergy Dr. when I still had “normal” eczema. There is a little pink on my chest and neck but mostly it is from an active day out in the sun.
This second picture is from July 27, 2012. This is when I was in the throws of steroid addiction. I had stopped allergy shots about 3 weeks earlier. Also, I had stopped using the super potent TS clobetasol. A derm had put me on “derma smoothe oil” three weeks earlier- which I was using on the “spreading eczema” caused by topical steroid addiction. Notice the eczema on my neck, that was absent 10 months earlier.
BTW this is roughly 6 weeks before quitting topical steroids cold turkey.
And here is a shot of my neck/chest today. Today my neck is extremely uncomfortable. The lines in my neck are starting to crack and are very sore. It hurts to move my neck. The color is almost purple. And large pieces of skin are coming off as well, which is somewhat visible in the picture. My chin also has a sore on it and has been oozing like crazy.
Anyways, today is Friday which means I have two days of sitting with my feet up and relaxing. I am supposed to go to a birthday party tonight, but I’m not really feeling up to it. Plus none of these people have seen me flaring and I’m not sure I’m feeling up to talking about it.
Tomorrow I have a birthday brunch with three close friends. I’m looking forward to it, although I’m sure I will be super uncomfortable.
I’m also thinking about trying to work out. And by work out I mean walk on the treadmill very slowly. I have been super inactive, which is quite the opposite as I am normally. I put my gym membership on hold after the pneumonia and it just kicked back in. Maybe I’ll swing by the gym and try to sit in the sauna to see how my skin tolerates some heat and sweating.