11 January 2013

Not Normal

I've written a little about it on my blog, but not much.  Mostly because I like to share the whole story but the WHOLE story includes some personal stuff that doesn't need to be on the internet.

This summer I was put on a medicine.  I reacted to it.  Itchy skin and a rash all over.  A band-aid of benadryl and claritin was recommended.  I'd tried that with  no improvement before I went in.  In frustration, I stopped the medicine that I was sure I was reacting to and was sent to another doctor to try to get to the underlying cause of the initial problem.  Dr. M saw me and said I wasn't normal.  Thanks Doc.  But he did find that my parts were normal as far as the initial concern went.  Dr. M also told me that no-one reacts to the medicine they put me on.  Awesome.  I informed him that seven years earlier, I was on a similar med that I also reacted to and then it was attributed to the stress of being a new mom and going back to work.  Dr. M said that nobody reacts to that because it's a .... [some really technical reason].  He said I could start back on the original medicine.

I went home feeling like I had no answers.  No reason for the first concern and no answer for the itching and ever growing rash.  After all, I had an appointment with the dermatologist set.

Eight weeks to wait may be okay for some  issues.  But for the rash and crazy itching I had, it wasn't do-able.  By now I had been paying close attention to the rash and how it closely follow my monthly cycle.  That's odd, isn't it.  It's one thing to get a rash that lasts a long time.  It seemed totally different to get a rash that got way worse during the increasing hormones part of my cycle.  Recalling my college days of animal science classes, I didn't have the cycle memorized anymore, but I had a general idea.  After all, dairy cattle are similar to women.

With four weeks left until my dermatology appointment, I couldn't stand it anymore.  It was overwhelming to itch all day long.  My skin was raw in places, I wasn't sleeping, and I and my whole family was tired of dealing with it.  I went back to the doctor office, this time seeing Dr. B instead of the PA.  He agreed my rash was yucky and was sure the spots of my knuckles was eczema.  At this point I'd tried claritin, benadryl, triamcinolone cream (to take away the rash), and a shot of [something] to take the itch away.  I'd also tried a month without the other med.  The rash continued to grow and got worse with each cycle.  Dr. B got me into a different dermatologist the next day.  Thank you God!

Seeing a PA dermatologist, she spent less than three minutes with me.  The raw spots on my hands were obviously eczema.  PA derm said I needed stronger meds.  She gave me a stronger shot (kenalog), prescribed a stronger cream, and really didn't pay any attention to the rest of my itching body.  PA told me to follow up in 10-14 days.  I thought that was perfect because at 10-14 days I would be at my peak cycle which means peak rash/itching.

Back to the pharmacy for the miracle cream.  Even the pharmacist, who I really appreciate, said this cream was harsh but it works.  Exactly what I needed: something to work.

With my new miracle drugs, sudden improvement did not happen.  My hands did clear up enough that I could put my wedding ring on for a few days.  With five days of relief under my belt, or should I say skin, I prayed that the rash would check out and not spread like wildlfire with my cycle.

It was day ~16 that I called the dermatologist office and left a message on the nurse's line.  She called back and said she was glad it was going well.  WELL????  Did you listen to the whole message????  I explained what happened and requested that she ask the PA several specific questions.  The nurse called back saying that the shot was still in my system so I should be fine.  I'm NOT fine I retorted.  The first available appointment would be 7 weeks out (thanks to holidays).

While at the chiropractor's office one day, he handed me a piece of paper.  It had three words on it.  He had listened to my random story of itching, did a quick google search and thought it sounded like me.  I waited at least a week before I began searching the string of words Dr. S gave me.  As I read some research papers, etc, it was a little scary - so much more than a simple rash.  I showed it to Ryan who didn't respond so I figured he thought I was crazy.  I mean, he knows that I'm a little crazy, but, you get the point.

Some time passed when we were celebrating Christmas with Ryan's family.  I mentioned to his mom what I'd read on the internet but that I wasn't sure if Ryan agreed.  He looked up and said "oh, that's exactly it".  Oh, okay thanks honey.  With the holidays on our door steps, I didn't figure it would do much good to get into the doc.  Once the holidays passed, I called to schedule an appointment with Dr. B.  After five months of paying attention, I could pretty much nail down when this rash would go wild.  Like I knew it would, the rash began to go crazy, and like each month, it was a little bit worse.

On Monday, with my arms looking like this pic above,  I walked-in to Dr. B's office.  I was on fire.  Literally, rashed from my neck all the way down.  Not all of my body was this bad.  The majority was a fine, but itching rash.  My arms radiated heat.  I was miserable.  And I was serious about getting something figured out so I even brought my husband!  Explaining to Dr. B what was going on and how it related to my cycle and how NONE of the meds had helped, Dr. B said that I was beyond his realm of knowledge.  I needed to see an allergist so he sent a referral.  If it was anything like the derm, I could be waiting a while.  In fact, I had one week left before my return to the derm's office.  Depending on how that all fell out, the allergist might see my skin when it was calmed down a bit but Dr. B assured me that it would be taken seriously, especially considering I had a collection of pictures on my ipod.
Lo and behold, I had an appointment scheduled for the next day in LaCrosse with the allergist. I don't know if Dr. B and his staff pulled some strings or if God intervened but I was so thankful to finally, maybe, get some answers.  The info I'd read online talked about it being rare and very few doctors know about it or are willing to take it on.  I was prepared to beg.  My physical and mental health needed something to change even if it was a little scary.
On Tuesday, I went into the allergist's office armed with the internet research and with some drug suggestions from another doctor friend.  I gave Dr. K a brief history, told him how I'd reacted in '05 and again now to this medicine.  He immediately named the string of words I'd been researching.  My mouth dropped as I watched him type it into google to show me a helpful info sheet on it.  Dr. K's mouth dropped when I told him I'd read it already.  No begging needed.  He knew.  He nailed it right away.  We were right.  Dr. K was great.  He spent time with me.  He listened.  He had an answer. 
Autoimmune Progesterone Dermatitis.It means I'm allergic to progesterone and it causes a really bad rash.
Dr. K's recommendation  stop taking that medicine.  Simple.  But I'd try that once for a month.  That one doc told me it was out of my system and my skin was still growing with a rash.  Dr. K shared that once you make the skin mad it just continues to get mad.  For a long time.  While that med was out of my system, it wasn't long enough for my skin to calm down.  Apparently skin holds a grudge.  It would take approximately three months for my skin to finish being mad.  Wow.  As I sat there with my arms radiating heat and my hands dry and cracked, I asked if there was a way to get my skin to quit reacting (knowing there was something that he might not be familiar with).  Dr. K reminded me of the list of meds I'd tried that hadn't touched my rash.  The kenalog shot was enough to last four months and it provided relief for five days.  Another drug I'd tried didn't help with the itch but did make me really loopy.  Like I wasn't sure if I was in my own body kind of loopy.  Yah, scary.  I asked about Doxipen, a drug commonly used as an anti-depressant, but a really good antihistamine (thanks Rob).  Dr K said if benadryl knocks me out, hydroxizine makes me loopy, then doxipen would make me crazy.  We agreed that I wouldn't be able to function on this suggested drug which is never a good idea when you're a wife and mom and work full time.  Time.  I would just have to be patient.  Oh Lord, please help me.
With this sweet little autoimmune disorder, there is a chance that my body will also be allergic to the natural progesterone hormone that my body produces.  Which would stink.  Dr. K doesn't think that will be the case but he said we'll know for sure in three months.  Three long months.
So there it is.  I have some uncommon autoimmune disease.  Who knew?  For five months no one knew.  Except the chiropractor who googled it in 10 seconds.  Guess who I called and thanked right after I got off the phone with my husband.  While it's been a long five months, it could have been longer.  I could have had to beg the allergist to research it.  I could have had to fly to Dallas or somewhere like that to see a doctor who would deal with it. 
I sit here with a sick child of mine.  I have a nasty head cold and itching that won't give in.  But I have so much to be thankful for.  After all, I haven't washed dishes since New Year's Eve :) and have a husband who chooses to love me even when my body is plagued with a rash and my attitude is plagued with grummpiness.  Thank you Lord Jesus for how you care about the little things.    

1 comment:

Anonymous said...

My chiropractor in Oregon was like this guy. He LISTENED. I have had so many docs and PAs who do NOT listen. Finding a medical professional who is curious, who isn't trying to fit everything in the 10 most common boxes he/she sees everyday, who is willing to consider that you might know a thing or two about your own body/symptoms... it shouldn't be that hard.
Glad you are on the road to recovery. Even if it is a itchy road.