Soy what?

I am on a new research kick involving Soy. I had it in my mind that it was plant based, part of a healthy Asian diet and good for you. I have found many credible articles that disproves my theory. It's of concern to me because I have been using a soy based protein supplement since August to maintain muscle while losing fat after my workouts. I switched to soy since it was on sale and did not have sugar additives. This is the only major change in my diet that I can recall. I did a google search on "soy and immune system" and many variations of those key words. There are many articles saying that soy is not FDA approved and soy may suppress the immune system. I was shocked. Artificial sweeteners were implicated as well. So I have to ditch the soy powder which will be easy. Cutting out my beloved diet coke...that will be hard. But until I reach my goal of healthy hair growth, I have to remain disciplined. If this works it would make a good amount of sense. Stress plus my food allergy=hair loss. I know it is not that simple but I am still determined to heal and get my terminal hair back.

Soy Articles

Hopeful

So I have done the new treatment twice so far. It came in a refrigerated cooler box which made sense but surprised me. It looks like a clear nail polish bottle and cost a small fortune. No surprise there. I took a cotton ball and rubbed it all over my head. It was cool and smelled like acetone but did not irritate me. Supposedly that is ok. It absorbs quickly so it barely feels like I have applied it. I was tempted to keep rubbing it in but I know better. I have to be patient. There was some shedding of my dark, terminal hairs though they are few and far between. I read that some patients had shown signs of regrowth in 2-4 weeks. At first I was excited by this but I have to be realistic. My immune system is fighting the good fight so I doubt it will turn around in such a short time. But it will turn around, I know it.

AT

I left out the part where I was upgraded to Alopecia Totalis, a more severe case of the AA. The majority of my hair is no longer in the terminal phase. What I have put together is that my immune system is healthy, just confused. I figure that the immune system is working rapidly against a perceived foreign body, it's working awfully fast in fact. The signals got crossed and it sees my poor hair follicle as the enemy. I had to read more of the re-growth testimonials. It's all slow. Here we go with the patience again. I am trying...

The funny part is that my short, cuddle wig is a big hit. I have told only a few people what is going on so I get daily compliments on my cut and color. Even on my best hair days I did not receive as many compliments. While I would still do anything to throw my hair up in a very unexciting ponytail--I have a hard time accepting the compliments without disclosure. It feels a bit scandalous but I keep my mouth shut. That is a new experience too but I think its good to keep certain things private. I mean, just because people compliment my hair doesn't mean they want a medical diagnostic. TMI!

Immunotherapy

I went to a specialist yesterday at Northwestern. My doctor was really upbeat and suggested a new treatment. We ordered squaric acid, which probably sounds a lot more harsh than it is. Basically it is an irritant supposed to distract the attention from the cells attacking the hair follicles, giving them time to recover and grow. They are going to also mix Rogaine into the solution to strengthen the shaft. This sort of trims down the rituals by sparing me of yet another ointment. At this point I am cautiously optimistic. Since pretty much most of the terminal hair on my head is gone, I realize this is going to take longer than I would like. In truth I was disappointed. I really wanted to be told I am making my way towards a healthy head recovery. But each stage of the process it has taken some time for me to adjust, and accept. This will be no different.

I also told her about the Thymuskin and Calosol treatments marketed to Alopecia patients. She said that she would research the solutions and get back to me with her opinion.

I am still meditating,exercising, using pre-natal vitamins and the aromatherapy. Of course, the new treatment is compatible with all of these things. My fingers are still crossed.

Brave New Year

The holidays were great and I focused on relaxing. The hair rituals have been put slightly on pause due to travel. Travel restrictions and luggage fees and all are not conducive to self-care. Neither are wigs in the heat and humidity in the Florida Keys. Two days into the trip Aileen shaved my fuzzy head down with a number 2 clipper. My hair is now white blond. Surprisingly is looks much healthier without the noticeable patchiness,less ill-looking. I can't stop touching it. I plan on keeping it this short until it grows in, or thickens a bit.

I felt oddly confident on vacation. Most people on the trip were acquaintances that quietly acknowledged and accepted my turn of events. It felt great not to have to say anything and I walked around bald proudly. It has been the most normal and authentic experience since the inception of my alopecia. Hiding it has been labor intensive.

I am not ashamed of my illness, was never ashamed. Only I felt protective of my feelings until I truly understood them. I know this is only a big deal to me, but it was still my deal and I was having trouble processing and accepting. Now that I have I am going to be brave this year for my resolution.

AA Shower

So I just found this towel online which will help with my aromatherapy oils at night. It is called the Hair Therapy Wrap. It's hilarious! But I am excited to get it because it heats up in the microwave and supposedly stays warm for 30 minutes. I read it was used by chemo patients for hair repair and sometimes just for hot oil treatment. I have been experimenting with bandannas, skullcaps and towels on the pillow. I can sleep in a skull cap now which is actually comfortable. It keeps me warm in the frigid temps.

While this item only set me back 20 bucks--this dis-ease is really getting expensive! WTF! I am thinking--would it be appropriate to throw a "Healing Shower"? I can set up my wish list on Amazon and it would read something like this:

Aromatherapy Oils 30.00/bottle
Hypnotherapy appointments 130.00/session
Relaxing Massage 60.00/session
Meditative CDs 25.00
Doctors Visit (5) 250.00/session
Cranial Prosthesis 200-300/item
Haircuts (past) 30.00/session
X-Fusion Lt brown 20.00/bottle
Organic Shampoo/Cond. 10.00/bottle

Would all my friends gather around me an "oh" and "ah" over the great gifts? Would they tell me how strong I am to go out in public alone and congratulate me on my success on maintaining a positive outlook throughout this experience? Tell me that they can't wait to see me with my new hair growing in looking fantastic...that would be great!

No, this is not as fun as a baby shower or wedding gifts but this is what it's costing to preserve my health and my sanity. My health care provider offers almost no support for treatment and quite frankly--it sucks! Would it be tacky to ask for donations?! I am sending good thoughts into the world that allow me to continue my self-care treatment without depleting my retirement account.

Relaxing and God??

So I bought this CD yesterday for self guided hypnosis. It is supposed to promote health and well being. I went through 2 sessions last night. One was for sleep and it actually helped drift off to sleep. Did it help that I was already really tired? Probably. But I really liked the suggestions to completely relax and I could feel my body responding.

My hair, while not a total buzz is almost gone on top. I hacked the hell out of what remained, I wanted to see what my head looks like. Since I don't have clippers, it reminds me of a little chick. Not as bad as I thought (the shape of my head I mean.) The hair really is gone though. The few sickly strands made me feel like a man fighting baldness with a bad comb over, so I cut it. I am not ashamed of the baldness. What alarms me is that so much of the self help books suggest my subconscious could have contributed to the loss. But all promise that there is an answer in side that can heal myself so I am encouraged by this. I have made a promise to myself that I would meditate every day to let go of the issues I may hold in my scalp. I still haven't admitted to myself that I do this. Most people that know me agree that I laugh a lot and let a lot pass. But in the meditation last night they said that the subconscious never forgets. I have an excellent memory of events so it makes sense that even if I told myself I was "over it" my mind/body was not.

For the first time in ages,this experience made me think about church. Why people go, what they get from it and what God is. The ritual reminds you weekly to let things pass, love one another and love yourself. The meditation seems similar. It makes more sense to me now.