Thursday, May 30, 2013

Intolerance of the heat

I remember being a kid and loving the summer!  Not because school was out, but the heat itself did not really bother me.  That changed in my late teens, early 20's.  I started to not like the heat AT ALL!  I just couldn't tolerate it.  Years later, I still dread the summers.  But I am hoping with going through topical steroid withdrawal, that I will soon enjoy the summer days again.  I had a glimpse of that today.

Today started off as bad as the others - grabbed my ice this morning, wrapped it around my neck, and got ready for another painful day.  Well, I started feeling slightly better through the morning.  The swelling and pain decreased dramatically.  I shut the AC off and opened the windows.  I then went to work and was able to tolerate the heat all day - hit almost 90 degrees out today and it was about 80 degrees inside.  The kids were the ones begging for me to turn the AC back on before I was ready to.  I actually tolerated temperatures greater than 70 degrees!  It may not seem like much, but it feels like a huge breakthrough for me! 

I started to think this was the beginning of one of the 5-7 day breaks I was getting once a month.  But over the last hour my left arm swelled up again.  Oh well, at least I got a partial day break!  :)

Wednesday, May 29, 2013

The Frustration of the Unknown

Going through topical steroid withdrawal is painful enough with the skin in a horrible state and horrible fatigue.  But what makes it more difficult for me is the unknown amount of time I have to endure this.  Of course the flip side is I know my skin will be great one day - something it has been for most of my life.  Having an answer to my "eczema" or "atopic dermatitis"  is something that cannot be measured!  It is too amazing!  But not knowing how long these symptoms will last is a huge source of stress for me.  I am only working one day a week and it sets me back for 1-2 days.  Completely exhausting me.  In order for our life to truly go on (in a financial way), I need to be working full time.  The stress is more than I care to have, but alas it is there. 

According to Dr. Rapaport, there is no way to really know how long it will take before the skin is truly healed.  A standard gauge is the longer and stronger you have used, the longer the withdrawal process.  Also using on highly absorbent areas like the face can increase that time.  I used all over from head to toe at some point in the span of 30 years.  I have used over the counter to high concentrations only obtained by prescription.  The standard time frame is 6 months to 3 years.  That is a big span for someone waiting to go back to work!  I am 3.5 months in and I have that feeling I am looking at 3 years.  Of course the whole 3 years should not be like it is today (at least I hope not), giving periods of breaks where life is not that painful. 

If you are going through this as well, hang in there.  Try to focus on the fact that healing will happen.  I do my best to look at that viewpoint in order to get through the rougher days. 

Monday, May 27, 2013

The Adrenal Glands

Today things are even worse - spreading swelling, excoriation, itching, and pain.  No idea why, and I have given up trying to figure out what I have or have not done.  It is just part of the process.  Having difficulty sleeping this week.  Ah, the joys of topical steroid withdrawal! 

I think going back to work has something to do with the worsening skin.  I am only working one shift per week.  But after each shift so far, my skin get s intensely itchy and swells.  I think my adrenal glands have a lot to do with this.  Let me explain...

The adrenal glands are affected by a lot of things - stress, caffeine, sugar, etc.  The adrenal glands produce cortisol - the body's natural steroid.  When we slather cortisone creams all over, some of that cortisone is absorbed, making the adrenals stop producing cortisol since it recognizes that there is some in the body already.  Because absorption can be affected on a daily basis, the adrenal glands I believe become highly dysfunctional - releasing and stopping cortisol production based on the amount of cortisone in the body.  When one stops applying the cortisone cream, the adrenals then have to learn how to function properly.  To add insult to injury, stress and diet will affect the adrenal glands in a negative way, making it harder for the adrenals to function properly. 

Reducing stress is very important in healing for steroid withdrawal.   I feel it is imperative to reduce as much stress as possible - not easy to do in this world.  Catch 22 - if I do not work, our income is reduced by half, causing stress.  If I work, the stress of work itself causes the body stress.  So one needs to look at some other techniques.  One is meditation or deep breathing exercises.  I find this one difficult given that trying to sit very still and NOT itch is near impossible.  I read about a pose where you put your legs up against the wall, while the upper part of your body lies flat on the floor.  This stimulates blood flow to your brain and produces certain hormones that help your adrenals.  I have not tried it yet, but it looks like something worth trying.

The other thing to help the adrenals is diet.  Sugar and caffeine are known to over stimulate and harm the adrenals.  Natural sugar found in honey and maple syrup are not what I am talking about.  I am talking about the WHITE sugar - the processed sugar.  The stuff found in many processed foods.  My goal is to eliminate all processed foods within the next week.  I have done it before and it was near impossible, but I persevered.  We lasted about 2 months as a family and our over all health was much improved.  Time to do it again. 

One more thing is vitamins.  The adrenals are in desperate need of certain B vitamin and Vitamin C.  The natural foods out there are depleted of their vitamins from years of one-crop farming.  For example, a natural peach today has nearly 50% less vitamins and nutrient than a peach 50 years ago had.  Very sad.  I choose to take supplements to help my adrenals.  I find a huge difference in my overall energy levels.  I took a week off of all supplements a few weeks ago and suffered from increasing severe fatigue.  That is now reversing.  Even though my skin is worse, I am better able to handle it sine I do not feel overwhelmingly tired and drained every second of every day.  I do take other supplements other than those vitamins - I take magnesium, calcium, adrenal support, milk thistle, and cod liver oil. 

Sunday, May 26, 2013

Pictures and Nutrition

Nutrition is a topic of debate among those in topical steroid withdrawal.  Many of us tend to relate flares to specific foods we are eating.  This may or may not be fact - it may be coincidental.  However, the biggest contention about nutrition is whether or not a specific diet will help one heal faster.  I belonged to the Google support group for those going through topical steroid withdrawal.  I found it very helpful - that is until I joined the debate about nutrition among multiple members.  I remained respectful and only added that as someone who has studied anatomy, physiology, nutrition, and organic chemistry in college, I know that science shows the body's cells need certain proteins and nutrients to heal and make new cells.  This is proven science.  It then seems logical that if you supply your body with as many healthy nutrient dense foods as possible, your body has the means then to heal faster.  Of course this is not as simple as it sounds.  Healing and producing new cells is not just based on the supply of needed nutrients.  There are many more factors involved - including whether your body has the energy to devote to healing - sometimes our bodies need to devote energy to other means.  But my view is, if one eats the healthiest foods available, one stands a slightly better chance of healing in a slightly shorter period of time.  Dr. Rapaport states that no matter what your diet is, you will still heal.  And I agree with this.  But personally I would rather give my body the proper tools and means it needs to heal as quickly as possible.

Nutrition is in of itself a hot topic of debate - which diet is best is discussed daily by many people and experts.  Personally, I go with the all natural approach.  What God gave us to eat is what is best.  Anything genetically altered, processed, or denatured is out.  God gave us many foods to enjoy!  Even if you do not believe in God, you can still go to what people ate before machinery and refrigeration began.  We follow the Weston A Price Foundation way of eating.  "Nourishing Traditions" by Sally Fallon is my cookbook of choice.  This is not easy to follow given our fast food generation we were raised in.  But it can be done if steps are taken over time/.  Trying to change everything over night would be possible, but extremely stressful.  We started off first by cutting out processed foods and finding a farm that sold raw milk.  Yes, we drink raw milk - we have for the past 3 years.  It is high in nutrients and so very good for your body!  We have bought raw milk from 4 different farms in 3 different states over the past 3 years and have never once gotten sick from it.  We make raw butter and homemade yogurt from our raw milk.  YUM!

Anyway, this is my viewpoint and the choice our family made for overall health.  We are not perfect - when I went back to work, it became very difficult to eat 100% naturally.  We still eat out and eat processed foods - however the goal  is to get to 100% as much as possible.  We often follow the Maker's Diet to jump start a new start to eating as healthy as possible.  We are due to do this soon given we have fallen far from the bandwagon.  Given what I am now facing with this withdrawal, I want to give my body as much as possible to heal.  However starting the diet and sticking to it 100% will be very hard for me, even though I am only working part time.  It requires diligence and meal planning....and of course energy.  Not sure if I will be able to accomplish this given how exhausted I am on a daily basis.  But I have to try.  Will be keeping this blog up to date on that venture soon.  I have a road trip coming up soon, and staying on the diet is near impossible on the road given the processed food restaurants serve.

If you have any thoughts on nutrition, please share.  :)

And here are the pictures:

This is at the 4 week mark

This at week 10

And at week 14

Left arm at week 4

Left arm at week10

Back of arm at week 10
Left arm week 14

Back of left arm week 14

R wrist week 4

R wrist week14

Neck week 10

Neck week 14

Face week 10

Face week 14

It is hard to see some of the differences - but to me my arms and chest are worse now at week 14 than other weeks, but my face was worse at week 10.   I used the same camera and similar lighting.  The redness is not as prominent in the pictures as it is in the mirror.  And swelling is hard to gauge from pictures.  But here they are.  As nasty and gross as they are.  

Saturday, May 25, 2013

Months 1-3

Today I reflect on the past 3 months of this journey.  I have learned so much from extensive research, other bloggers, and medical literature.  It is sad to think steroid cream was prescribed with good intentions, but the warning labels were ignored by dermatologists over and over.  If you read the information included with steroid creams, most will have a warning not to use longer than 7 days.  If your condition persists or worsens, you are to stop using and call your doctor.  Well, those doctors would then prescribe stronger creams or say it was safe to use for longer periods of time.  I now know this is wrong.  As a nurse, I kick myself for not seeing the obvious.  For years (we are talking YEARS), I researched eczema constantly!  I was in and out of flares all my life.  Some years were worse than others.  But I never stopped pursuing a cure.  Somewhere deep inside I felt that the doctors were wrong and that eczema in adults was NOT auto immune.  I felt strongly that there was a reason my skin was in and out of severe outbreaks - flaking, itchy, dry, oozing skin.  Certain things made it worse, like my hormones, birth control pills, and stress.  Those correlations only added to the auto-immune theory though.  But again I kept thinking there was something I was missing.  And here is where I dropped the ball - and I mean severely dropped it!  I know what prednisone does to people - I know people put on prednisone have to be weaned off of it.  It has many toxic effects on the body.  I had taken prednisone a few times in my life for severe allergic reactions and when my skin got to the point I couldn't take it anymore.  I also knew cortisone cream was in the same family as prednisone - both are steroids.  I also know that anything you put on the skin gets absorbed into your body - your cells, your blood stream, your organs, etc.  But for some reason I never put it together that I was essentially destroying my body with the cortisone cream like prednisone destroys the body.  I dropped the ball big time!  I kick myself for this - thinking if I only thought it through years ago I could have saved myself so much damage and so many more years of pain.  But hindsight is 20/20.  Life must go on!

Today I am at the 3 1/2 month mark.  I am having a bad time of things.  I hate thinking about this - I hate talking about this - I hate crying about this.  But it is all consuming.  Every minute of every day I itch and am in pain somewhere on my body.  It drove me insane today - I got in the tub before I had any scratch fit.  But the effects from my severe scratch fit last night were still raw.  I cried the whole time in the tub.  The burning never abated.  The kids started arguing over something stupid and I lost it.  I had a melt down.  I was crying because of the pain.  I cried because I cannot be the mom I want to be right now.  I cried because my kids are suffering right along with me because I am not there for them like I should be during these dark days.  I do not know how people with chronic pain handle life.  I at least have an end in sight.  I may not know when the end will be, but I know it should be within the next 1-3 years.  I know the pain and itching and burning will be a thing of the past for me.  So how do people cope when told there is nothing anyone can do for their pain?  I cannot imagine.  I cannot imagine not having an end to this torture.  I am thankful every day I have my answer - my cure - even if the completion of that cure is not immediate.  I am OK most of the time waiting for my cure to come, because at least I have one.

I was looking at the few pictures I have taken over the past few months and for some reason I was under the impression my condition was similar to the beginning....but the pictures say otherwise.  Comparing the first and second month pictures to today - I am much worse now than I have been.  In my research, I have learned that a lot of people in topical steroid withdrawal have it the worst in month 2.  But for me, month 3 is worse than month 2.  I can only pray that this is the peak for me.  That I may get over this mountain to the other side where I have breaks in this suffering.  But I have come across a few people who are 1 year out and have not had a break - where they have been in a constant state of flare for the entire year.  I pray their cure is equal to that - that their first break and clearing of the skin is a constant one for the rest of their lives.  To go through this flare without any break for so long would be unbearable for me.  I have been fortunate to have had two 4-5 day breaks.  I was expecting one by now, but have yet to get it.  Those first 2 breaks were not a time where my skin cleared completely - it was significantly less itchy, less swelling, less redness, and hardly any pain.  I dream of those days - knowing I will one day get the break where I am cured for good.

Right now, both my arms are swollen, bright red, sores everywhere, painful, itchy, and oozing.  My neck is starting to flare worse - now having to have my ice pack in 24/7 again.  Behind my knees are severe - painful to walk, sit, stand - basically any change in position makes me flinch or even gasp.  I put aquaphor and vaseline on with little relief.  My face is just plain dry and flaky.  Waiting for it to start swelling and oozing at some point.  My back has multiple areas of dry cracked skin, very itchy and painful.  My hands thankfully are OK with only a few fingers with a few sores.  My upper legs - bunch of sores.  My chest and abdomen are red, swollen, and oozing.  All I can smell is that sickening smell of the ooze.  My husband and kids tell me they can't smell anything.  I think they are just being nice.

Sorry this is a downer of a post.  But I am trying to chronicle this journey accurately.  And life with this is a true downer.  I know some people who have had to take anti-depressants.  I am not at that point - no really, I am not.  I have suffered post partum depression in the past - that is true clinical depression - I know what that feels like after having it with all 3 kids.  This is what I call situational depression.  I am depressed because of a specific situation in my life.  We all get this type of depression at some point in our lives.  The kicker is to not let it consume you to the point of clinical depression.  That is a hard call given this condition makes one severely fatigued - making it nearly impossible to function normally.  My lack of zeal for life and lack of wanting to do things could be easily mistaken for depression.  For now, I can see the difference within myself.  I WANT to be doing so many things but physically I cannot right now.  I tried pushing myself the first month, only to be let down at my inability to do as much as I wanted to.  Now, I have learned to rest and only do what is necessary and a few things I think I will be able to do.  I have gotten good at gauging my level of fatigue and what I have left in energy.  I only overdo it if it is absolutely necessary.

I was going to post pictures today - just not ready to right now - too depressing just looking them over.  Maybe tomorrow.  I know it is important to share as I know more and more people will find themselves with this steroid cream addiction - if they find this site, I hope they get some comfort knowing they are not alone.  Sometimes having pictures of others helps one to gauge where they themselves lie in the severity index of this withdrawal process.

Thursday, May 23, 2013

First Post

Welcome to my blog!  I am here to tell my story and hopefully help others going through this very painful journey.  My journey began as an infant when I was about 6 months old.  I had eczema.  At that time things like Benadryl were prescription.  Steroid creams were available but I did not start those until later.  I went through the typical phases of eczema - on again, off again, and in typical places like the face, back of knees, and elbows.  I remember having it on the back of my neck in 6th grade.  I remember all too well the kids in school making fun of me.  I was around 11 years old I believe.  Around that same time I remember having a wart on one of my hands and my mom taking me to the dermatologist to have it treated.  It was then I was prescribed my first steroid cream.  I remember being so happy to have my skin clear up and not be made fun of!  Unfortunately I was not instructed properly on its use.  I used it more and more and started requiring stronger creams by the time I was in my 20's.  Fast forward to now - age 40 and nearly 30 years of steroid cream use! 

I was fortunate to come across information on Dr. Rapaport from California who is researching topical steroid cream addiction and withdrawal.  You can go to for more information.  Basically if you have used a steroid cream anywhere on your body longer for the recommended 5-7 days, and your condition continues to worsen, making you use more and more steroid cream, then you have a problem.  This is not just for those with eczema - it is for anyone who has used topical steroids for ANY reason (including hemorrhoids).  The topical steroids cause significant damage - the longer and stronger you have used, the worse off your skin is, and more than likely, the worse your withdrawal will be. 

Withdrawal is painful and often the skin condition is significantly worse once steroid creams are stopped.  This lasts differently for everyone - some have cycles of flares that progressively get better. Others have a constant flare for a long period of time.  The overall withdrawal time is different for everyone - some only have 6 months - others 3 years (worse cases).  There is no way to predict the severity or length for anyone - it is all a guess.  Dr. Rapaport states he has cured over 2000 people and they have all healed.  This is reassuring especially when times get rough! 

Currently I have completed 3 months of withdrawal as of 5/14/13.  Only now have I had the energy and clear mind to get this blog started.  It has not been an easy road by far.  I started off thinking I could still work through this.  I was so very wrong.  I made it 2 weeks into withdrawal and broke down.  I couldn't sleep and my adrenals were so sick - making me fatigued beyond comprehension.  I would fall asleep sitting at the table eating.  I could barely make it from the couch to the bathroom some days.  I work as a nurse in the emergency room.  I could no longer think straight by week 2 and that was dangerous!  So I took 3 weeks off...but that was no where near enough time.  I was only just starting to get into the thick of things by weeks 4-6.  By then I could not drive - my neck was so inflamed, broken out, oozing, and too painful to move.  I was broken out on my chest, back and arms at this point, but my neck was by far the worst area.  I LIVED with an ice pack around my neck 24/7.  I took dead sea salt baths every other day - salt is a known antibacterial and infection is a concern for so much open/broken skin.  I call my tub my torture chamber!  Just getting it started takes me over an hour of agonizing over the coming pain.  Getting in causes high anxiety - salt on open wounds stings like the dickens!  Oy!  Anyway, my husband and I came to the decision for me to quit working for an indeterminate amount of time.  Not easy to do going from 2 incomes to 1, but we did not have much choice given my risk for infection. 

Life is slowly going neck got a break for a month - when the worst area was my left arm.  Now it is returning to my neck and I am back to the ice packs for about 8-10 hours each day.  It is also bad on my right arm, behind my knees, my face, chest, back, and upper legs.  I am still in a lot of pain and my baths are still torturous.  The good thing is I found what works for me for sleep.  It differs for everyone.  I tried Atarax, but that did nothing to make me sleepy or less itchy.  I went back to Benadryl but that only helped for 3 hours.  Now I take Benadryl, wait an hour until I get sleepy, then take 800mg Ibuprofen and 1000mg Tylenol.  Those together help with pain and inflammation.  It works for me and allows better sleep.  I still wake around 4 am - but I will take another dose of Benadryl and sleep good until 9 or 10 am.  I also take a bunch of different vitamins and supplements - mostly to support the skin and adrenals.  The adrenals become dysfunctional when using steroid creams for so long - they have cortisol in them and that is absorbed through the skin - making the adrenal glands produce less cortisol of their own.  When you go through withdrawal, your adrenal glands need to learn how to function properly again - which takes some time. 

The good news is I have made it 3 months - bad news is I am still as bad as I was in the beginning.  I get a 4-5 day break every 4 weeks it seems when my skin is less painful and less itchy and less red.  I am about due for this and much looking forward to it!  I am not getting my hopes up as things can change.  I know I have a long ways to go.  And a lot more pain.  But I have seen pictures of those who have healed - and they give me hope!  I know without a doubt, I will be singing the happy songs of victory sometime in the next few years.  I know I will have energy again, clear skin, and no more itching!  Oh, what I would do to have a few days of NO itching!!!  I have no idea what that feels like! 

Another good thing - I went back to work on an as needed basis only last week.  Worked an 8 hour shift and was completely and utterly exhausted afterwards!  But glad I did as I need to feel productive and useful!  Our lives are on hold basically until I can go back to work full time.  Life is not easy right now and the plans we had to move have been stalled.  The future - which was once full of plans and goals, is now uncertain for the time being.  Knowing how much better I will feel on the other side of this keeps me plugging along. 

Just one more tidbit for today - I have memories of absolutely loving the summers as a kid!  The heat never bothered me - in fact I loved it.  But by the time I was a teenager and early 20's, I started disliking the heat.  It has now become my most dreaded time of year - I get agitated and just cannot tolerate being outside if it is above 75 degrees!  Now I know why!  The steroid creams have long ago damaged my sweat glands - I just do not sweat much at all! My conclusion is I cannot cool down properly and therefore become agitated and sick in the heat (and when I exercise longer than 15 minutes).  Looking back now, it all makes sense.  Maybe one of these days I will enjoy the warm and hot summer days! 

Off to bed now.  Coming in a few days - pictures of my progress so far.....