August 20, 2013 - I Meet the Chair

At this follow up, the resident doctor brings in the department chair.  (I will provide names if asked)  I like him.  He shows respect for my desire to avoid steroids and acknowledges that topical steroid withdrawal is a valid phenomenon.  He explains that if it were up to him he would utilize some topical steroids to reduce my symptoms, but respects my desires.  He explains that he will have to resort to medical practices of 40 years ago.  He said if that doesn't work, then we may have to part ways as his solution at that point would include steroids.  I agree.  The plan is to immediately put me on strict bed rest with my feet elevated as much as possible, as my symptoms have not improved and the edema in my feet has not improved.  Several times per day I am to coat my body with vaseline and wrap myself in warm damp towels.  Either that or take a very long bath to hydrate my skin then slather on tons of vaseline.   I am to follow up in a week.  Fortunately, my job allows flexible hours and my manager is very understanding.  Short term medical leave has been asked for and granted.

I follow the instructions and the edema immediately eases.  After about 4 days it is minimal.  This helps my temperature control issues as well.  My skin is not as flakey, but still oozes when scratched.  The itching did not improve.  Rather than a couple, I find myself taking up to 4 baths a day.

The day before the one week follow up I have a set back and scratch off quite a bit of skin on my lower legs so I look pretty bad even though I have improved.  The docs order another week off work.

As I write this, I am a couple days away from the next follow up on September 3rd, and I am not much improved.  My primary problem at this point is the itching.  I succumb to the urge to itch and damage my skin.  The baths do not help the itching as much as they did.  Tonight, for example, my chest was itching at level I never thought was possible.  If my fingernails were not filed down to nothing I would have likely scratched down to my ribs.

I keep trying various combinations of anti-histamines and  pain relievers to try to get a handle on the itching, but absolutely nothing seems to work.  It is almost 4:00 in the morning and I sit here wide awake, my chest on fire from the scratching.  I have Kleenex under my arms and legs to absorb the ooze.  I dread going to bed (or rather going to the couch) as I know I will simply toss and turn with prickly itch coursing over my body.

I am fighting depression, but I am encouraged by the success of others and by the support from my wife.  She has been awesome.