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.

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