More Lola And Doctor Updates

Lola sent me a really nice three-part text tonight.  I accidentally deleted it but she thanked me for our talk, thanked me so much for my contribution to raising her and teaching her many lessons.  She said my support meant the world to her and she really wanted me to be in her child’s life and most importantly, she said she’s going to think of a cool name for her kid to call me.  So…sigh…nice.  Sometimes, things are said to you that just make you feel like the whole journey is worth it-that you did something right, somewhere.  This was one of those times.

I went to the doctor.  Huge and high anxiety as I mentioned before.  But guess what?  The dude was totally awesome.  He listened and didn’t make me feel rushed.  He wasn’t condescending and he didn’t claim to know it all.  He was impressed that I had done so much advocating and research on behalf of my own good health and never looked at me like I was some whack job who diagnoses themselves off of Internet research.  At one point, he disputed something that I thought was fact.  He researched it right in front of me and admitted that I was right and he was wrong.  I appreciate that in a man.

Here’s the funny part.  He totally is ready to diagnose me with Celiac Disease and I find this shocking.  If you’ve followed through this maze, six months ago, after seventeen years of feeling like hell, I decided to eliminate all gluten from my diet.  Last summer I started to notice that when I got my carbs from greens instead of grains, every symptom that I suffered for so many years seemed to vanish.  Now, I’m no doctor, but this seemed like pretty solid evidence that I had a gluten intolerance.  And without going into all the many symptoms of Celiac Disease, I have many of them.  And every single one of them have disappeared since going gluten-free.  Unfortunately, whenever I eat, my skin blisters.  It’s like being burned with a match-extremely painful.  Intensely painful.  This is what really prompted me to start the search again for a doctor.  After listening to the history and taking a twenty second look at my skin, the doctor agreed with me that it really looks like dermititis herpetiformis-the Celiac rash.  There is one treatment for it, but it’s majorly serious medication, like…methamphetamine serious, so I have to have a biopsy next week to confirm that what I am suffering from is specifically DH.  I feel closer to answers and that makes me feel better.  But it’s still so surprising when you actually hear it from someone who went to college for twelve years.  Like, I listened to my (totally damaged) gut, I’ve spent days of my life researching, educating myself, changing my entire life and I was so right to do so.

I also was able to discuss the anxiety I am suffering from.  The human mind is an interesting thing and I find myself feeling an actual fear when I am hungry and know I need to eat.  Fearful because I know that I am fifteen minutes away from pretty excruciating pain.  It’s a dangerous dynamic for me to be in the middle of.  I’ve always had food issues and now eating has become such a “thing” which isn’t a healthy space for me.  Dr. Wonderful suggested several things including meds and cognitive behavior modification.  He’s left the decisions to me; I have a lot to think about.  My hope is that if I can get the skin and pain condition under control, the anxiety around eating will dissipate.  If not, I’ll go the med route.  I’m sleeping approximately ninety minutes a night right now-that needs to change.

This has been really hard for me to go through.  Thank you to all of you who have emailed or commented or even just read and sent a thought my way.  It actually has made a huge difference in not feeling so alone in this.

Finally, and I’m not ready to share too much detail on this yet, I may also be having some mayjah surgery.  I’ll talk more about that when I know for sure and rest assured, I will be posting what hospital I am at so you can all send me chocolate….but, again, more life-changing fucking stuff.  I’m really ready for some boredom.

Tags: Celiac Disease, dermititis herpetiformis, gluten, Lola