Posted by: eczemancipated | May 13, 2014

Raising Awareness Guest Blogging

I’m in month 25 of RSS recovery. My last visit with Dr. Rapaport was extremely positive.  He said get plenty of sunshine and it looks like 12 months or less – bar any crazy out of the ordinary events happening. I have so much to catch people up on with regard to my recovery. However, I must keep you in the loop about my Guest Blogging Appearance on http://www.justglowingwithhealth.com

Last year, I worked with http://www.justglowingwithhealth.com to raise awareness for RSS and ITSAN.org while I posted my 30 Day Raw Vegan Food Journal. The response was excellent,  so they asked me back. As of May 12 (yesterday), I am posting my food journal and talking a bit about how the last year of RSS recuperation has been.

I hope you will all follow along to help support us as we raise awareness for Topical Corticosteroid Addiction. You can find my first post from yesterday at: http://justglowingwithhealth.com/guest-post-raw-food-challenge-day-1/

Follow us on Facebook,  Twitter, Pinterest and Instagram @hpesthetics and @justglowingwithhealth.

Posted by: eczemancipated | February 13, 2014

“Lax” Ligaments

Having spent half of 2012 and 2013 in bed has created further complications in this “healing” process.  In the summer, while taking one of the multitudinous amount of Epsom salt baths we all have to take, I did something to my leg. Just thought it was a pulled muscle really. I figured if I walked enough it would mend itself. Between July and November the pain grew worse, effecting my entire leg and foot. I know you are all nodding your head in disappointment. “Heather 5 months you let this go! For shame, for shame…” But you see I had tried to ignore it as there are only so many Dr visits one can handle and the thought of something else going wrong while dealing with RSS was just too much to bear. However once my left foot starting turning in while I walked with a heavy limp, I was forced to put my tail between my legs and go to yet another doctor. (I don’t know what I was thinking either…)

Turns out after several visits and other issues surfacing, I had sprained my hip socket in July. (Who’d a thunk it?) Since I ignored it for so long and continued to jump on the rebounder and take long walks, it made all the muscles in my left legs start to fall and as a result the arch in my foot fell and led to the foot turning in.

Well the hip socket and fallen arches are all fixed now.

In an attempt to recuperate, while performing light stretches, I tore a ligament in my left leg and heel. (Granted my left leg had an 11-year-old ligament/tendon injury after slipping and falling in a public bathroom, at a rest area, on our way to snowboard while I was dating my husband. I am still made fun of to this day because I had to go to the ER and walk on crutches due to an injury that occurred on the way to snowboarding – not while  snowboarding. I sat in lodges all week guarding my friend’s and family’s stuff as I jealously watching out windows at those being carted up the lifts…)

The whole hullabaloo  seems to have culminated over the fact that I have “Lax Ligaments”, due to lack of muscle, as a result of being bed and house bound since April/May 2012. This means I am unable to perform stretching exercises without threat of tearing more ligaments. So I have been ordered to build muscle.

Here is where the challenge begins.

The best form of exercise for Lax Ligaments is swimming. Why? Well the body is weightless in water, so it creates the safest environment for you to build muscles without putting strain on the body.

Why is this a challenge?

I am recovering from Corticosteroid Addiction thus on 75% of my body I have Red Skin Syndrome.

Public pools are filled with Chlorine in some form, whether its liquids or crystals or salt that becomes electrically charged to form Chlorine. Chlorine is super bad for people whose skin is compromised. A person with normal, healthy skin could handle about 3-6 parts per million in Chlorine while swimming without irritation. I don’t think a person with RSS could handle 1p/m. And some public pools are negligent with overseeing the amount of Chlorine and the PH balance in the pool.

Therefore RSS sufferers and chlorinated public pools should not mix.

(I actually have a chlorine filter in my shower head which I use to fill my bathtub so as not to deal with any chlorine on my skin.)

On the off-chance that I was wrong and I could tolerate the chlorine, at the doctor’s direction I researched 5 different public pools in Santa Cruz County. I narrowed my search down to 2 locations and convinced the club with the indoor pool to allow me to stick my legs in their pool for half an hour to see what would happen to my skin. As My legs are about 95% healed I thought they would be a good test. If my legs had any reaction, for sure my upper body would react.

The next day I reluctantly went to “test the waters”. That rainy cold morning, I ignored the blank stares of little old ladies in swim caps and aqua booties performing water Pilates and the shifty smiles of mid-life crises men swimming laps around the pool. Awkwardly, I sat at the edge of the pool on my neatly folded turtle beach towel quietly reading a book.  I dangled my little legs – shins down –  in the heated chlorinated lap pool, baring my knees in rolled up stretch pants. Thirty minutes elapsed with only a slightly itchy tingle on my left ankle. I thought, “well pretty good”.

I returned home and thoroughly gave my legs a washing in the tub with the shower head nozzle so as not to sit down in the chlorine residue. Twenty-Four hours elapsed and I had no reaction, other than the annoyance of the faint chlorine smell still lingering on my lower legs. The afternoon following my water testing activity, I drew a bath at home as I usually do. My husband was in the living room working on some CAD drawings. After sitting in a full tub for about 5 minutes my back and the back of my arms started to burn. I called my husband in to examine the burning areas. He confirmed that I was severely red in patches all over my back and the back of my arms. We deduced that there must have been some chlorine residue in the tub even though I washed my legs off with soap and water. We concluded that there was NO WAY I was going to be swimming in a pool.

After sharing my experience with the doctor. We deliberated together and decided I may spend 20 minutes daily at the local Club One Fitness on the Elliptical Machine at a very low and slow setting. In the meantime, I will start physical therapy at an actual physical therapy office – which I will now have to wait for a referral for. Then as my muscles build, I will get a personal trainer at the Club who specializes in helping people recover from extreme illness resulting in deconditioning. I feel anciently old in this body and can not wait to recover.

In the midst of all the above, I had to have major dental work. Which hopefully will finally come to an end tomorrow when they put a bridge in my mouth. And I got the flu last Friday to boot – laryngitis and all – which is still lingering fiercely.

I am just the epitome of health these days!

I type to you now from a large Asus double processor laptop whilst sitting at a tiny yet stylish 1950s secretary desk that once belonged to my Father’s Father. He refurbished it in an odd 1970s green paint, antique wash style. It seems fitting that I type these posts here at this desk, as feel like I have so much in common with both objects. Here in my antiquated body sits this youthful brain just waiting to be accessed, blinking cursor on blank page.

I wonder if my Grandfather was overwhelmed when he took this desk to task and refurbished it to look more modern and appealing. I certainly didn’t know what I was getting myself into. It’s like the project that will never end. At least I can hope to have as much character when I’m refurbished…

 

 

Posted by: eczemancipated | February 13, 2014

Social Media

Many of you have already found me on Instagram, Pinterest, Twitter and Facebook. If you have then by now you know I post a lot of food pictures. Originally I had set up business pages through Facebook  called “Eczemancipated” and “HP Esthetics”. I will be taking those pages down soon, as I just can’t maintain 3 different Facebook pages. It was a good idea at the time, but not so much now.

Actually, I don’t really post to Facebook anymore. When I post to Instagram it automatically post to my Facebook page for me. Eventually, when I am well, I will be maintaining my http://www.hpesthetics.com blog and attach this blog to it for future Corticosteroid Addicted Patients to search.

Right now the plan is that when I am no longer on disability, I will return to my original business. I am a California State certified Holistic Esthetician specializing in Dr. Vodder Lymphatic Therapy and Nutritional Counseling. At that time my articles and posts will be very skin related – thus the screen name “HP Esthetics”. These posts will also include health, wellness and raising awareness for Red Skin Syndrome articles. (Unless when this is over, I wake up one day and choose a different field of work all together. Who knows, we’ll see.)

Should you want to follow me, you can find me on Instagram/Twitter/Pinterest under the username: HP Esthetics or HPEsthetics

Posted by: eczemancipated | January 14, 2014

Compression Bandages and Rolled Gauze

Today I would like to discuss the topic of Compression Bandages and Rolled Gauze. I am in my 20th month of Topical Steroid Withdrawal recuperation. I have been through boxes of Gauze bandages and more recently added Compression Bandages to my repertoire.

Fun fact: If you live in the United States, as I do, and you have health insurance or medicare/medical (I get confused which is which), then you will be happy to know that a prescription written from your physician is all you need for the majority of the cost of your compression bandages to be covered. I only had to pay around $35 towards approximately $550 worth of Juzo Compression Bandages.

Fun fact: Not all compression bandages can be washed and dried in a machine, so take care to read the instructions in order to care for them properly. From what I have read you will get a good 6 months out of them before you need a new prescription.

Fun Fact: You can order Rolled Gauze in bulk through Medical Supply Websites. This is both cheaper and more practical then getting them in the store. If you are like me, you will go through BOXES and BOXES. We order from http://www.vitalitymedical.com

COMPRESSION BANDAGES VS. ROLLED GAUZE

I do not find that one particular option is better than the other. I find that which bandage you choose should be based on what symptoms you are experiencing. Such as:

Oozing
Open wounds
Infections
Skin temperature
Allergic reaction (skin tolerance)
Travel needs (are you going to drive or fly long distances, etc.)
Exercise capabilities (are you still bed ridden or are you up and around at all)

Rolled Gauze, in my opinion, should be used when your skin is oozing has open wounds and/or some types of infections. (Other infections should be exposed to the air and left to dry. Gauze can hold in too much moisture and spread the infection.) Frequent bandage changes are a good idea to keep the skin clean and prevent infections or reduce some infections from spreading. They are also disposable so you will not need to wash them, which may be more practical if you don’t feel well. You’ll just make a lot of garbage instead of laundry. (haha) Gauze can absorb oozing. You must be careful though not to take off the crusty layer beneath the gauze when it dries, it will hurt and possible start oozing again. Antibiotic ointment/cream, essential oils and moisture may be tucked away beneath a layer of gauze. An open wound maybe wrapped tightly so as not to expose it to infection when out in public. Rolled Gauze will wrap around just about any area of the body. I used only Rolled Gauze from May 2012 – October 2013.

Compression Bandages, in my opinion, are great when you are  no longer bed ridden, starting to get out and about a bit, traveling and walking. I had to fly across America in the end of October and again in November. As, I had been experiencing a lot of Lymph Edema and no longer experiencing open wounds or infections (at that particular moment) I decided to get Dr. Rapaport to prescribe Compression Bandages. I was afraid such an extended period of time in the plane would make my body swell and cause the more fragile areas of my skin to re-split open or the cracks to get much larger. I was so pleased with both the reduction in my itch level and the reduced swelling while I was wearing my Juzo Compression Bandages on my hands, arms and legs. I actually thought to myself I should have gotten the Compression Bandages in the summer, as my skin had greatly repaired between June 2013 and August 2013.  Since I have been running more errands and attempting to take walks regularly, I also found the Compression Bandages to be particularly helpful on days where I was extremely swollen. The only down side is that I do not have many pairs of Compression Bandages and do not do my laundry daily. So I do not always have a clean pair to wear and will go with out. I plan on ordering several more pairs just from my hands, as these are what I wear most frequently.

Skin Allergies, Skin Tolerance and Skin Temperature are something worth considering when choosing bandages. I find that my skin will sweat at times whether I wearing Rolled Gauze and Compression Bandages. So either way it can become a bother. If your skin can not tolerate the materials of the bandages, don’t give up hope. All is not lost. I found that at different stages of healing I have begun to tolerate more fabrics and different blends of materials in the Gauze. There is no way I could have tolerated Compression Bandages prior to my 13/14th month off of steroids. I was getting so many skin infections, open woods and oozing the Compression Bandages would have made me uncomfortable and probably would have spread my infections if not cleaned properly. Skin Temperature may be affected more by the thickness of the Compression Bandages then if you only use a few layers of Rolled Gauze. You aren’t really going to know which bandages you can handle till you try them.

So don’t be afraid, it’s all a crap shoot anyway. Am I right? or Am I right!

Posted by: eczemancipated | November 20, 2013

Louise article on contact allergy

http://topicalsteroidwithdrawal.blogspot.com/2013/09/methylchloroisothiazolinone-and.html

Posted by: eczemancipated | November 20, 2013

Louise defining oozing skin

http://topicalsteroidwithdrawal.blogspot.com/2013/11/topical-steroid-withdrawal-and-oozing.html

Posted by: eczemancipated | November 20, 2013

Fantastic post by Louise (fellow TSW/RSS Blogger)

http://topicalsteroidwithdrawal.blogspot.com/

Posted by: eczemancipated | November 18, 2013

The Loooong Suffering

Sometimes, I must admit, the hardest part is the waiting.

Hope is not that hard – I have been hopeful all my life. But let’s not kid each other, I was raised in the United States.  Patience has never been our virtue no matter how long we’ve been making a crack at it.

The war is between the will to be content while recouping and keeping the underlying sadness at bay. Developing “long-suffering” is the daily fight of all us Red Skinners.

I often admire the children when contemplating the topic of depression while dealing with Topical Steroid Withdrawal.  The children are so resilient.  They deal with the flares and go right back to horsing around delightful of the temporary break. I am jealous of their understanding of the distance of time.

Don’t get me wrong, Im no lazy Maven. I do take on house hold projects, run errands, participate in a wee bit of volunteering, attend my local congregation meetings and spend time with family and friends. But nothing really removes the dark cloud, except unconsciousness.

That was, I think, the blessing of the initial Adrenal Supression 20 hour a day sleeping. The time flies and whole entire months pass before you realize it. But when enough healing happens that you only spend 12 hours asleep, the other half of the day drips on no matter how “busy” you make yourself. Because at the end of the day you are still “with plague”.

Sometimes I think, “well maybe if just the itching would stop and I was solely waiting for the skin to repair”, maybe the sadness would stop. Maybe the melancholy piano solo that followed a disappointed Charlie Brown (or the more recent sitcom character George Michael) would stop repeating over and over in my head. 

But alas – It’s like ‘water torture’, a slow drip drip drip on your forehead. One drop at a time driving you closer to insanity.

I just keep puttering around wasting time until this is over. Put me in a coma (and a straight jacket to keep from scratching).

Don’t worry I’m not anymore depressed today than I was yesterday. I just wanted to blog about the sadness and stop pretending that all these milestones of healing make me happier than I was 18 months ago.

Of course I know it’s better now than when it all began. But that doesn’t make what I’m dealing with today any less difficult. It’s just a new phase… The phase of crazy may be. Haha! Not. Okay haha.

And I don’t want people to feel sorry for me or “poo poo” me. I’m just sayin…

I will let you know when I am happy. Right now I’m eating a big slice of “just dealing pie” with a side of “hope a la mode”.

Fun times.

Posted by: eczemancipated | November 12, 2013

18 Month Update

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!

Posted by: eczemancipated | October 8, 2013

Half Way

Today marks the anniversary of my 18th month off of steroids and 1 year of blogging. For some reason last month I thought was my 18 month mark but I miscalculated. It’s this month.

This blog has had more than 10,000 viewers these last 12 months. And that’s without even blogging since July. It was kind of exciting when I looked at my wordpress.com stats for the first time today in months.

Well, what does “Half Way” (the title of this post) mean? When I first stumbled into this adventure, Dr. Rapaport told me to prepare for the long hall. He estimated I would experience Red Skin Syndrome (the result of Topical Corticosteroid Withdrawals) for 1 month/1 year of Corticosteroid usage. By the time I came off of Corticosteroids I had used them (with a few periodic breaks) for 36 years. (I started “using” at 1 month old.) Um, pretty much my whole life.

So based on his calculations I am looking at a 36 month recovery. Thus, this marks my “half way” to freedom.

I haven’t written in quite a while due to a brief “staycation” at my in-laws, other family visiting for a month followed by a prompt 4 week battle of skin infections. The last week I have finally been able to get out and about. To kick off this temporary skin upswing after 3 weeks of bed rest, I took my first walk on the beach last Wednesday with my oh so pregnant close friend and her almost 3 year old son. But I am cautiously tip toeing through each activity as I just can not seem to define my personal health limitations and boundaries yet. (As I type to you now with bandages cradling my brittle dry cracked plasticine, at times very itchy, hands.)

Well, 18 months down and 18 more to go. There you have it.

To be continued…

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