Posted by: eczemancipated | May 7, 2013

1 Year Down – 2(?) More To Go

Dear Future Me,

Today you completed 1 year of Topical Steroid Withdrawals and tomorrow you will begin year 2. Although it could take us potentially all of year 2 and year 3 before 100% healing, I would like to pat us on the back for making it this far. If I could summarize the saga I would break it out into 2 separate periods of 6 months.

April – September 2012 were indescribably hot, burning, itchy, painful, uncomfortable and just plain grueling. The flares started on our arms and hands and slowly traveled to the face, neck, chest and abdomen. Gained 25 pounds of fluid by June from all the swelling and I’m guessing being bed ridden. Mom went out and bought us a rebounder (mini trampoline) to jump on for a couple of minutes a day to keep our lymph system flowing. We lost our cognitive functioning ability to make clear sentences, remember those crazy text messages you sent that didn’t even make sense? It got so bad, the message you left on your voice-mail said “Don’t leave a message, I’m not checking them.” Totally bed ridden from June through most of August. It was incredible we could travel the 5 hours down to Beverly Hills to see Dr. Rapaport. Do you remember the two weeks where every sound was so loud that you had to wear ear plugs in the house all day and even still had to tell mom to keep it down while she talked to dad on the phone from the other room cause it sounded like she was screaming? HaHa. How about those same two weeks where you could smell everything from like 100 feet away, including people’s breath, and everything smelled putrescent? I’m cracking up laughing to myself just thinking about it. Yes, we still feel the creepy crawlies at times but not like before when we could actually feel each of our eyebrows moving. It was so horrible to feel like bugs were crawling all over our whole body every minute of every hour of every day. The night sweats were awful and we slept like 18 hours a day, I really couldn’t tell you much about the summer except that some how our husband, mother, sister, aunt and uncle pulled us through.

October was our first 3 day break in all skin problems. It looked as if we had never had TSW. But man did our thyroid go nuts and goiter out while visiting mom and dad. We had to find a doctor and get ultrasounds and blood test. Thankfully the swelling went down and it fixed it self.

The second 6 month period was October 2012 – April 2013.  We woke up one day in the middle of October flaring for the first time on the legs, ankles and feet. But at least you had lost 15 pounds by then and the swelling wasn’t so bad. We started taking walks in September for about 20 minutes at a slow pace without losing our breath and you actually started to do that DVD of ballet stretches. Started to get our appetite back too. By November you were able to do little bits of cleaning around the house, drive 10 minutes to the grocery store, grocery shop a bit and tackle a random load of laundry all in the same week. We could direct our husband through making a few dinners a head of time, but the friends in our local congregation provided most of our meals so we didn’t have to cook. By Superbowl while our sister and her husband were visiting, we made our first entire dinner by heating up frozen foods and making a salad, haha. Thank goodness our in-laws bought us a Vitamix though so we don’t have to prep too much and can make plenty of fresh fruit smoothies, soups and sorbet. (That seems to be our current favorite meals.) December got rough though. We wound up in urgent care a few times with skin infections which lasted through most of February. As a result we didn’t take walks or Ballet – really missed it. Our lymph nodes swelled up all over our body, which is strange cause we weren’t as flared as the earlier 6 months, but I’m thinking it’s from all the skin infections you were fighting. Dad came out to visit a bit, that was a real pick me up. And Dr. Rapaport said at our last visit that we’re doing fantastic and to start getting sunshine everyday except on our hands and arms since they are still pretty raw and flarey. So this last month has been about 3-6 days a week of laying out in the sun for an hour based on the weather. It’s amazing the difference after being in the sun versus the days we aren’t able to lay out. April saw some amazing progress, we can drink alcohol in small amounts without going into an itch melt down. We wore makeup at a wedding AND you danced for a couple of hours. So I have to admit our endurance is better, we can do a lot more activities in one day, we only sleep 12 hours a day (although most of it is waking up a lot cause the insomnia is still bad), voice is strong, we can have relatively lengthy conversations. But holding the phone to our ear makes us have an itching meltdown so we have to keep everyone on speaker phone. Strange, I know.

On the fun side, we did a 30 day Raw Vegan diet and posted a Food Journal on to raise awareness for TSW. The diet totally cleared all the skin infections cause you never had another infection. But the 30 days of journaling really took you out, I guess it was too stressful to have to meet a daily deadline and do research. We took a sabbatical from technology and today is the first thing you’ve posted since March.

So it’s May 2013 and our whole body isn’t covered in the flared rashes. It looks like we have eczema instead and yeah we’re still pretty itchy but nothing like last summer. Now it’s mainly just our knees, ankles, elbows, neck, wrists, hands, fingers and collar-bone itch these days. I do admit that the arms and legs need a really good scratching once or twice a day still. We still have the night sweats but it’s mainly on your neck now. This may have to do with the fact that so many lymph nodes in your neck are swollen and still fighting internal infections. And we very rarely feel any burning. Oh and we get elephant knees and ankles when we aren’t flared, it’s a scary sight. The knees and hands seem to swell quite a bit. There are some days we just lay in bed all day because our hands are not useable and are really painful. We still gauze our wrists and hands, but the last few weeks sometimes we just wander around with them in latexFREE vinyl gloves to hold in the moisture. Especially since for the last month our arms, wrists and hands have been flaking so much.  Dr. Rap seemed to think if we keep doing the sunshine thing that the legs should clear up around early autumn. So I guess we’ll see what these next 6 months bring. Next week we’re staying at mom and dads for two weeks and get a little more tender care. I’m glad that this summer we will get to spend a lot of time outside. Doctors orders!

Sorry future me, I’m losing steam and am sure I’ve left tons of things out. Congratulations to us for making it through an entire year! Maybe we won’t have to get through another 2, maybe it will be less.

We’ll see…


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