It's been well over a year since I last posted next week will mark my 2 year anniversary.
So what's new...  In life, I'm back in AZ and loving my job. Brad finished school and is officially a Therapist now. Dogs are good. Still cute.

As far as withdrawals, well, they are kicking me down. Honestly not much has changed since October 2014 which is when I went back to work. My hair is falling out, my eye is droopy and the kids at work have questioned "why does your skin look like that" too many times to not effect my ego. Things are stagnant and I'm frustrated. My skin is horrible. I shouldn't complain because I absolutely know it can be worse. Sometimes it's hard to see how it's all worth it though.

I had a dream about a month ago that had me in tears and freaked me out. In it, I had inadvertently come in contact with steroids when I would hug someone, shake someone's hand or even pet s dog. It's easy to think its true though because of how my skin is doing.

It's tough. I hope that it's over soon because I can't take much more. I really just want to get on with things. Little things and big things.






Above photos taken in September 2015. Below photos taken this month.







I'll post pictures from the last year and a half in another post.

Be blessed,
Brandis

5 months

Things in Life can change in an instant, and I know every peak has valleys, and every raindrop must fall, but they will rise up again, renewed. 

Not much to report on. I know I haven't posted much lately, but I've just been trying to live life as simply and happy as I can. 

Brad, the dogs and I drove to Tucson for Easter and it was amazing. I didn't feel my greatest because I went into a week long flare before we left. There was only one day I had to put the brakes on bc I couldn't move from the bed after our Church service. I felt so beat. My legs were beyond swollen and oozy, as were my face and arms. Thank God I had my family. 

Mama Debye set up an acupuncture appointment for me while I was down and it was so refreshing to have someone take time with you, address all of your concerns and to conduct effective treatment. I will be looking for one in Irvine this week! I think acupuncture will be able to support me physically as well as mentally. I will write more about this is a different post. 

When we got back to CA, my skin seemed to do a turn around( minus the face). Brad even said how good my skin looks. I've started sweating some and for 3 nights I've slept through the night! Well except last night but I blame that on the hot weather coupled with the itchies. 

So as we end month 5, this is what I'm taking and what I'm doing. 

-Taking fish oil, msm, and zinc

-moisture withdrawal and limited shower/bath

-Cutting back on lots of fruit and sticking with a daily pear

-No Iced drinks. Warm or room temp only (from acupuncturist)

-simplifying my meals even more- tons of veggie soups and stews, stirfrys and small amount of animal protein during the day, usually at dinner, loads of lentils and beans, rice and sweet potato

With making these changes,I have noticed a decrease in the edema. Not completely but there is a difference. 

Now on to ongoing symptoms:

-Insane insane (can I say it again?) insane deep to the bone itching. Sigh. This ones hard 

- oozing. Mainly where I rub or scratch but it will be all over my arms and legs. Those heal fairly quickly however. My face hasn't healed in months. Frustrating and gross. 

-edema. Nothing fun about it, especially when it stretches your already thin skin to its breaking point. 

-general pain. Nerve pain, body aches, searing skin. 

-hair thinning and loss. Eyebrows and scalp. Sigh

I'll post some picture updates when I jump on the computer (after I KO all this itching which is seriously driving me nuts! And a nap wouldn't hurt either)

Brandis

Psalms 27:14 - Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD

4 Month Skin Update and Earthquakes (!)

Hey all.

It's the end of March and I am coming up on 4 months completely off steroids. There have been several changes over the past 2 weeks. 

Last week, I was in another horrible mini flare. I had painful edema in my face, arms, lower stomach, hips and legs. The skin on my face was not only swollen and puffy, but also raw and oozing constantly. It was so uncomfortable that it landed me in bed with my legs propped up almost the entire week. It was painful and awkward laying down because of the skin pricks and extreme itching. 

I had mentioned before that my doctor had suggested water pills to help with the swelling. I took them, however, I'm not sure how much they actually helped. I was stressing because of the swelling, itching and sleepless nights. 

Side note: I did manage a little treat for the week. That sweet potato ice cream I had mentioned before? Delicious!

This week, things seem to have turned around a bit. I am going to attribute it to tons of rest and my epsom salt baths. I had a lot of ginger and wheat grass and I would like to think that the combination gave my immune system a little boost.

The swelling in my face and legs are at an all time low (although I still have bad edema . One step at a time...). My skin also feels thicker. I still have a crazy itch, but at least I haven't been scratching the skin off. They say the itch is a good indication of healing though. So who knows. I've also been sleeping at night! This is awesome because honestly, I don't even remember the last time I've gone to bed at night and actually slept. I have been averaging about 4-5 hours of restful sleep. Woo hoo! 

My face is not raw anymore, and has finally dried enough to the point where I think it will heal over. I hope that the swelling goes down some more.

OK, let's talk about the shedding for a minute. I thought it was bad before but good grief! It is unbelievable. How do I even have skin left at all? If you see me in person and think, "hey its snowing out. What the...?" it isn't the weather. It's simply my skin blowing in the wind. 

I'm happy about the improvement of the swelling, however, the itch is driving me nuts and it just seems to spread spread spread. Hoping for a break soon. A real one. I miss being out in the sun and I have a bad case of cabin fever. 

Here are some pictures I took for the update. While the swelling has improved, you'll notice that the skin is still angry and puffy. Notice the difference in the skin color on my face, hands and legs. The discoloration on my skin is disheartening and I hope that it fades soon.

            
                                


Now in other news, Brad and I felt our first earthquake tonight! It was so weird. We were at a stoplight and the car starts bucking. My first thought was that the car was going to explode, and Brad's first thought was that I must be dancing in the car. Uh, I wasn't even moving. 
It all happened so fast. The traffic lights were swaying and all the lights in the office buildings were flickering on and off. It was short lived, but exciting non the less. 


Till next time,

Brandis


Hope deferred maketh the heart sick; but when the desire cometh, it is a tree of life.
Proverbs 13:12

Managing Flares

Hey All.

I thought I would do a post on how I am managing my flares. Now, I am not saying that everything works as it really is trial and error. I have been in a constant flare for a good solid 3 months. Within that time, I have had huge flares within the flares (I am now coming out of one) that puts a stop to all activities. Doing everything I can do on my end to avoid them is crucial, because there's no need to make matters worse. I hope that these tips can help some folks!

Food:
This one is HUGE for me. Early on, I noticed that what I eat has a huge impact on the severity of the flare. This goes back to June of last year when I had started to unknowingly go through my first withdrawal. If I eat the wrong thing, I will pay for it in the form of blisters, hives, severe swelling, and of course, The Ooze. It started with gluten, but as time went on, I have noticed more and more triggers. I decided to just make a Do Not Eat list and put it up on my fridge.

The potatoes I'm not too sold on and haven't cut them out completely, but I will be reducing nightshades. Also, I need to watch spicy stuff. Once I feel the flush of heat in my face, I know I've had something I shouldn't have! It is a pretty restrictive diet, but let me just say this: Thank God for vegan, gluten free and paleo baking recipes!

Skincare:

I'm pretty spartan when it comes to skincare. When I am in the midst of a big flare, I really can't stand for anything to be on my skin. Right now, I am only moisturizing on my face. Jo, a fellow TSW-er, said that she found withdrawing from moisturizers really helped the condition of her skin. I tried it and while my skin was really tight, I was not going crazy with the itching and actually got a couple decent nights of sleep. Thanks Jo! 

After this last mini flare, I decided to just moisturize my face and neck because of the severe cracking of the skin. So my new routine is this:

-Wet a cotton ball with water and wipe down my face and neck

-Soak another cotton ball with witch hazel and pat over face and neck

-Follow with either jojoba oil or shea butter.

This new routine I feel has helped the healing process on my face. As for the rest of me, I just let the water from the bath or shower moisturize my skin. I will have to see how this goes for a bit longer.

Baths and showers:

When I can tolerate them, baths and showers are helpful. With my showers, the only product I use is Trader Joe's Tea Tree Tingle body wash. It helps soothe  the itchiness without further drying my skin.

As for baths, I find putting a ton of epsom salt helps with the swelling of my legs, and generally soothes the skin. 

Itching:

Keeping my nails short help with the scratch-induced wounds, but I only wish I knew how to get rid of this itching! Antihistamines, sleeping pills, wearing long sleeves and pants to bed and keeping myself busy help me to not think about that itching so much. Hoping it eases up soon because it drives me mad!

Swelling:

I have been swollen to some degree since....well for almost a year I guess. The new doctor I went to on Monday suggested that I try water pills. I started them last night and hopefully that helps a great deal. I am really hoping for a reduction in my legs, arms,face and neck. 

Another thing I try to do is get some exercise in. I hope that light stretching and low impact exercises. I have to be careful not to exert myself too much though. 

Stress:

Hahah. I'm trying! Having a positive attitude really helps with this. Playing Borderlands 2 with Brad helps. Listening to Efterklang's live version of "Cutting Ice to Snow" and Mary Mary's "Get Up"is wonderful too. You can't help but smile after listening to them. 

As for completely getting rid of my stress? I wish. 

Epsom salts and vitamins are a must for me.

I'm not saying that the things that work for me will work for others, but maybe some will. The Itsan.org forum has great suggestions to ease comfort from people all over the world. I have definitely picked up some suggestions myself. The most important thing to remember is that time is the only thing that will heal the body. I will probably do a post soon about the mechanics of this beast and how it affects the whole body. 

Brandis

But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

Isaiah 41:3

Sunny days, oozy nights and doctors visits

Hey all.

I hope everyone's weekend and St. Patty's was great. The weekend was absolutely beautiful here. Sunny and warm! Friday, I decided to try out a new baking recipe. Garbanzo bean peanut butter blondies with carob chips! I took a chance with the carob since it had dairy and sugar.It did make me itchy, HOWEVER, they were awesome, no matter what my nieces might say!

mmm!

Saturday was so nice that Brad and I decided to wake up early and walk down to the farmers market by campus. You can always count on the crowds when it's nice out, even early in the morning. We picked up some fruit and veggies and Brad got some hummus. We found some great deals too. A big bag of kumquats for only 2 bucks! All in all, the trip was good and we walked over 3 miles. Not bad.

A nice treat before walking back

. 

Even though I was covered from head to toe on our outing, I still suffered from getting too much sun. The last few days I have been dealing with the consequences: Swelling,oozing, grumpiness and sleeplessness. The good news is, even though I'm still very tired and dry (and itchy), I am feeling a lot better today. And I gotta say, just to do something normal with Brad made it worth it.

On Monday, I had a check up with a new doctor, and it went great. While he wasn't familiar with steroid- induced eczema, he was very supportive with my non-use of steroids. He was actually shocked that the doctors would pump that much into me in short period of time. He suggested UV treatment to help the skin so that is something to think about. I was supposed to get blood work done, but as I expected, wasn't able to because of the low visibility of my veins. Fine by me because I absolutely HATE needles! Next week I will just stop by the lab and get it done there. All in all a good trip and the anxiety I was feeling about it was not needed. I go back in 4 weeks for a follow up and I think that I will print out some articles from ITSAN.org to bring in to him. 

He prescribed me some sleeping pills (yay sleep!!) and gave me a spray called Dermazinc. It is the non-compounded version that contains no steroids. The zinc is supposed to help relieve the itch and help the skin heal. Has anyone used it before? I hope it helps! With the exception of yesterday, I haven't been moisturizing because it actually makes the itch worse, so I think that I will just try a little bit of the spray on my hand and see how that goes. 

I think this week will be a good one. I am going to make sure it's a good one  and look for the blessing instead of the shortcomings. That is definitely something I need to work on. I will also try out a new recipe for ice cream so I will report on that later. It's a sugar free sweet potato one. Mmmm! Gluten, dairy, egg and sugar free. That's how I have to eat so any little treat, I'll take it!

Hope everyone's week is going well!

Brandis

A merry heart doeth good like a medicine: but a broken spirit drieth the bones.
Proverbs 17:22

Eczema and Steroids

While these times are tough, I know that it will not always be this way.

Maggie and I, before the withdrawals

I think it was in elementary school that I was diagnosed with eczema. I always had itchy rashes on my body, including scalp. This is when my topical steroid use began. Throughout the years, I would go through phases where my skin would clear, then flare. With each flare, the doctor would always prescribe a new topical. Some were non-steroidal but mostly they were. I had eczema all over my body, but it was highly concentrated on my face/ neck area and my arms. It was in high school that I started getting Kenelog shots to help the bad flares that the ointments didn't clear up.

After college, I lived in Eugene, Ore. for a couple of years. The first year I was there, my skin was relatively okay. During the second year, things started getting bad. I kept dealing with worsening eczema, and unlike previous times before, the topical steroids were not working that well anymore. More shots followed and even more prescriptions. By winter 2012 I was back in Tucson helping plan my wedding and dealing with doctors. I was so frustrated. I saw a dermatologist at the Mayo Clinic in Scottsdale, AZ and one in Tucson. They allergy patch tested me, did biopsies, and prescribed more steroids, gave me steroid injections, and put me on rounds of Prednisone and antibiotics. While the worsening eczema seemed to get a little better, the medicine only held it back while the medicine was in my system, then came back with a vengeance. As soon as I moved to California, things got way worse.

I now believe that after the large amount of steroids in my system within a 5 month period set off steroid withdrawals after I moved. Of course I just saw it as really inflamed eczema that I never had before. I couldn't figure out triggers to help it go away. This was the start of the red skin before it started spreading too much. I had a bit on my face and neck, arms and chest/stomach area:

 I noticed, however, that going out in the sun and eat gluten would cause an extreme flare with swollen face and neck and really bad skin oozing. My face has been varying degrees of swollen for almost a year now. This is what it was at it's worse:

We just couldn't figure it out. Was it environmental? The sun? my food? candida? California with all its pollution and people?? It just started spreading...

...and spreading...

...Until I decided to go to the urgent care during the summer. He just said yep it is definitely bad eczema. He didn't seem concerned with my extremely swollen nodes that had been that way since who knows when. He prescribed prednisone and a new one for me: a large amount of steroids through an iv. I also had antibiotics. Like before, I was fine as long as the steroids were in my system, but then it only got worse.

During Thanksgiving, we traveled to Tucson to be with our families. I started the trip off with a swollen face and another trip to the urgent care. This time, the steroid shot and prednisone had little effect. The swelling slightly went down and my skin started to clear somewhat, but that's about it.
Not a fun Thanksgiving:

I felt broken.

I couldn't sleep well at night because of the itching. The raised, painful and splotchy rash covered me from my head down to my ankles. I felt like I would go crazy with all of my itching. I spent the nights scouring the web, praying for answers to this. It wasn't until January that I found ITSAN (International Topical Steroid Awareness Network). I read the symptoms, saw the pictures and watched the video with Dr. Rapaport... it was me. I instantly felt a weight lifted. Steroids caused this, and now I need to heal.

I am currently in the middle of a flare within a flare. My symptoms that I am experiencing are: puffy face and neck, edema in my arms and legs, oozy and dripping skin, terrible chills, elephant skin, insane itching, insomnia and limited mobility. Nothing is giving me relief at the moment. Even baths cause me pain. Not fun, but I deal with it. Here are some current pictures of my skin. It is also all over my chest, stomach and back, but these are definitely the worst areas. I like to think of it as wearing a lovely red ski mask,  long sleeve turtleneck and red capris. hmm.....

 

 

 

As embarrassing these photos are, I really just hope that they help someone out who may be going through the same thing. Please visit www.itsan.org for information regarding this condition. They have medical articles and the forums has a wealth of information for sufferers. Not to mention support.

I would hate to end the post with scary skin pictures, so instead I will end it with a couple pictures of my little California family.

                  

                                  Maggie and Senge

Maggie and Brad

That's all for now,

Brandis

Heal me, O Lord, and I shall be healed; save me, and I shall be saved; for thou art my praise.

Jeremisah 17:14

New Beginnings

New Blog!

I am really excited about sharing the comings and goings in my life. There has been so much that happened in the last year. I got married to Bradley in Tucson and moved to California just a few days later. Right now, unfortunately, a big part of my life is dealing with this pesky steroid induced eczema (aka topical steroid withdrawal or red skin syndrome). My next post is going to go into my history with eczema and how it led to this current condition along with some pictures. I have to say that the process of your skin healing is both gruesome as well as amazing.

Despite all the challenges that I am facing right now, life still has pockets of beautiful moments. I have wonderful support from my husband, family and friends (pups too). www.ITSAN.org is another place where I have found answers and support with steroid withdrawal and hope that others will find that it helps them as well.



That's all for now,
Brandis



Bless the Lord, O my soul, and all that is within me, bless His holy name. Bless the Lord, O my soul, and forget not all his benefits; Who forgives all thine iniquities, who heals all thy diseases.
Psalms 103:1-3