Feelings

Well, I've tried the cream that the dermatologist wanted me to put on. A steroid cream called Clobetasol Propionate Gel that is supposd to stop the inflammation around the hair follicles. A very expensive cream that, if I paid sticker price, would be over $500 for 60 g. Wth the help of GoodRx coupons, I was able to get the tube for $35! The doctor also wanted me to use Rogaine to help hair grow back.
I used the cream for about 4 weeks but after two, developed itchy bumps that were similar to an allergic reaction. I decided to stop the cream, at least for a while, to see if that helped. I also decided not to try to Rogaine, although it sits in my bathroom cabinet in case I change my mind.

I think I've run quite a gamut of emotions. There is grief, anger, frustration, disbelief. I think my husband and children think it's not so bad and it probably won't get any worse. I think worse case scenerio and wonder when the rest of my hair will fall out. I did buy a head 'cap' just in case. My husband still thinks I'm over-reacting. I don't have clumps of hair appearing on my pillow overnight or showing up in the drain in the shower. Some days when I feel the wind in my short hair I wonder if, in a year, will the wind be whistling over my bald head? The uncertainty of it drives me crazy. I'm sure people without this disease think "Hey! That's great! If this is all that happens, lucky you!" How can I explain that I almost want my hair to all fall out so I don't have to wonder 'When?" any more. I can just go on with my life. With hair loss at the back of my head, I don't know what could be happening back there day to day. I never knew I had any issues until the hairdresser found it. And only after that, did I realize I had no leg hair or armpit hair. It happened gradually and I never knew.

July 4 2016

Diagnosis Day

Hi! My name is Lori. I thought I would keep a  journal of sorts about my alopecia diagnosis and thoughts and feelings that go along with it.

June 3 2016
 I had my hair cut at my usual place - Supercuts. I had a hairdresser that I had not had before but she was doing a good job and I was having it cut quite short. After she had worked on my hair for a while, she turned to me and said "I love the birthmark in your hair!". I was confused and asked what she meant. "Oh, this area with white hair!" I asked her to show me. I was stunned. The area was behind my left ear, about a palm-size area wiht just a few white hairs poking out. I don't quite remember the end of the session. I made my way outside to where my husband was sitting in our car wiating for me. I showed him what she had found and he took a picture with his phone so I could see it better.

On this picture you can see there are actually 2 spots. There is a smaller round area to the right.

With my hair down, all you can see is a few white tufts sticking out!

June 10, 2016

After a week of searching the internet and coming up with a possible diagnosis of poliosis and alopecia areata, I went to the nurse practitioner that we see in town (small town, no doctor). She had the same ideas I had and told me I needed to visit a dermatologist. I was able to get in to Mayo Clinic in Rochester, MN close to where we live. I considered myself very fortunate to get in so early - I only had to wait a week.

June 17, 2016

My appointment with the dermatologist went as well as can be expected I guess. He confirmed the diagnosis and showed the younger dermatologist there the "explamation mark hairs" at the edge of my balding areas. Then he proceeded to tell me worst case scenerio including finding a support group! Again, I was stunned. I could lose all my hair! The doctor told me that where I was having hair loss was not an encouraging sign. Often hair loss in the ocipital region - behind the head and between the ears, meant hair loss could be complete. Also the fact that I had been losing body hair and didn't realize it, was another bad sign of things to come. Before I left the exam room, the doctor took pictures of my balding areas along side a ruler. I think one area was 4" by 5" mm and the other 3" by 3" mm. I thought this would be a good idea to continue at home. One very helpful pamphlet was given to me that showed me a website and talked about support.

June 21, 2016

Started taking pictures at home for comparison. I realized after the third time we did this that our pictures needed to be a little more standardized. But you have to start somewhere!

I can see here that we need to NOT cover up the area with the ruler...lol