Well as I have said before compared to last year, I’m waaaay better. My face has been totally clear of any and all TSW “Flare” since May(ish). My abdomen is like 90% clear although off and on it has weird hivey type itching. My décolleté is like 75% better but still giving me trouble, in fact I flared terribly on October 23rd across my decollete, both arms, hands and fingers. I was bed ridden for several days. I do think this is especially because of a lymph node in my neck that has been swollen for almost the entire 18 months that blocks my lymph flow. Also I had volunteered to do something during the week that required a lot of my attention and time and I ate crazy bad. In fact some of my friends were like in shock at my terrible diet choices. So this continues to prove to me that I have existing food allergies which will probably exist even after I have fully recovered from RSS/TSW.
My arms are up and down depending on how full the lymph nodes are under my arm and chest. The nodes in my underarms (pits) swell and shrink daily which can be painful and I still get night sweats a few nights a week. I’m still trying to go bra-less as much as possible so as not to restrict the lymph flow in my underarms. I found wearing a bra for several hours causes large swelling of my underarm nodes. So I limit this to specific public outings where I have to be dressed up or many people will be present who do not know me.
My hands, wrists and ankles are still the absolute worst with swelling splitting itching oozing shedding and pain. But i would say they are about 60% better than last year. My legs are a close second. For some reason my left leg has gotten a few sores that weep and my legs tend to get folliculitis. To prevent infection of the hair follicles, I will have my legs waxed from time to time (after I have cleared from a bad flare) as the pores will shrink when there is no hair sticking out. (It is impossible to shave, it irritates my skin considerable and at times spreads infection.)
My sleep is still interrupted by itching a solid 2 times per night. But I almost never have insomnia (just on occasion if I ate sugar or I have been extremely itchy which aggravates my nervous system, etc.). I can fall asleep pretty well and continue to take my “Sleep Tight” herbal/amino acid supplement to calm my nerves and brain. It is solely the itching that makes me jolt awake.
Interestingly, I have been dreaming for a couple of months now. I forgot what it was like to dream. And that is exciting because that means I’m getting deeper sleep and more healing.
My body is still retaining a lot of fluid and I still feel really raw, like that feeling of being scraped and sore. It seems the week before my “lady’s days” is a progressive spiral downward and then about 3 days into my “lady’s days” I start to recover. So I tend to have 2 really good skin weeks and 2 bad skin weeks a month. I’m still itchy every day but instead of all day long its pretty consistent that its about 4 times a day. (Not including my middle of the night itching.) About every 4 hours I have a mini 10 minute melt down. And my whole family has come to realize that many of these melt-downs are because I have to go to the bathroom. Yes, this is a strange phenomenon. Apparently my body’s anxiety level increases right before I have the urge to go to the bathroom and instead of my brain telling me I have to go, it tells my entire body (especially my arms and hands) that I’m itchy. So we’ve realized that when I start manically itching for no reason that someone needs to snap me out of it and yell at me to go to the bathroom. After doing so I pretty much experience instant relief from the itching. I contribute this weirdness to my adrenal glands still healing.
I still require a solid 10-14 hours of sleep. This depends on how much energy I have expended during the previous day, whether I am experiencing an intense flare or I have had an allergic reaction to something I have eaten. I can survive for a day or two on just 8 hours but only with the knowledge that I can sleep for 12 hours in the days coming.
I have been able to cook most days of the week, keep up with all household chores and run errands for everything. This has made me really happy, as I feel content with myself for being able to contribute to the household functioning and relieve my husband of all the things he was helping me with.
I would say that my flares are averaging 6-8 weeks apart now and they don’t last any longer than 10 days. Except when the “flare” is compounded with infection. For instance September 7th I woke up in a serious “flare” with 3 types of skin infections – weeping wounds on leg, impetigo on arms, freaking boil on face and massive staph infection on ankles. I went on antibiotics for the staph. It took like 6 weeks to heal from the flare, the infections and stop scarring. Then October 23rd I went into another “flare” without infection that lasted about 4 days. Then around November 4th I flared for 24hours. Other than occasional weird welting hives and intense itching I have been flare free for the last 8 days.
Last night I had an alcoholic beverage since I was out to a special dinner with my family. Today I’m welting mildly, but it was worth it.
I am no longer using Hydroxyzine (Attarax). I find that when I take my prescribed 25mg dose I have tremors and I’m pretty sure I get rashier. Now I use just Zyrtec-OTC when I know I’m gonna have it rough during a flare. I also use Children’s liquid Benadryl at night. I don’t use them every day, usually just for 5-10 days and then I can stop for about 5-10 days. I think it has to do with my female hormone cycle.
We are on a family vacation right now. Before I got on the plane to fly from California to Florida I had been flaring and pretty swollen. So Dr. Rapaport wrote a prescription for Lymph-edema Compression Bandages by Juzo. I got them for my legs, arms and hands. They worked wonders. I would not have survived the flights without them. Also the compression against my skin kept me from being itchy. I didn’t feel itchy at all while wearing them. Usually I just bandage my hands, wrists and ankles with disposable cotton gauze so I don’t have to deal with laundry. But I’ve worn the bandages 3 times over the last 2 weeks and have had great success.
I am still continuing to get Manual Lymphatic Drainage Massage weekly. When I return home from vacation I’m having 10 treatments during a 14 day periods to hopefully reduce the swelling. I really haven’t recovered fully since my September 7th flare. Also I still use the jacuzzi jet mat attachment for my tub and bath for 1 hour each day with it to keep my lymph flowing. I have been trying to walk 5 miles 3xs per week along the beach. It takes me exactly 2 hours but I feel it has contributed to keeping me moving. And of course I have my mini-trampoline which I try to jump on 10 minutes a day. Also I have a ballet floor exercises workout DVD that I try to do regularly. However I haven’t done it since September when I started doing the 5 mile walks.
Well, that about wraps up my existence at the moment. I’m sure I’m leaving things out. But this will do for now. Keep on trucking my fellow Red Skinners!
eczemancipated 