dreams

I always knew it was important to dream, I thought it was a way that we process our days. in the book Awakening Intuition, Schulz talks about patients dreaming of their illnesses in interesting ways. For example, one patient had dreams of rats chewing out his stomach. This person ended up having stomach cancer. Schulz also said that once the problem had been identified, patients stopped dreaming that dream. (Makes sense). There were more convincing examples so I have been researching my dreams and their symbols. Oddly enough I recalled some of my significant dreams from the time I was diagnosed with AA. I kept dreaming of closet space because my closets were fulled. I just thought it was because my condo is small and I don't have any room for storage. According a dream decoder it says that home and closet may represent your life and crowding could mean cluttered. That is consistent with my life last year. I had a lot of stress and responsibility that I did not want or need. If I had listened to my dreams--perhaps my body would not have neede to respond. Day and night we have to learn to pay attention to what our body is telling us. I am going to do that for sure--but my actual closet situation has not been rectified.

stress management

I believe that overall stress was a prime factor in triggering my body's alopecia. The past year I have made a concerted effort to reduce stress and change my body's response to it. Meditation and yoga have certainly helped, as well as an overall change in perspective on responsiblity. Recently I had something happen which caused me to become quite upset. It caused me to temporarily abandon my healthy rituals--just when I needed them the most. I was caught up in the worry and lost focus of what would actually help me. It happens. I knew what I needed to do but I was so tired--I didn't feel up to task. Having allowed the time to "do nothing" I then was able to go back to the business of self care.

But hardships are good reminders that we need to constantly address our health and stay connected to the needs of our body. I would hate to loose all of what I gained through this experience for a little setback.

progress

The best thing about getting my hair dyed is that is allows me to see the growth and progress. My hair is now a few shades lighter then my natural color and many of my new baby hairs are already popping through in a darker shade of brown. I can feel the little spikes and actually see them! Very encouraging. I was looking back at some older pictures this year and I can's seem to remember how the transformation from non-pigmented hair to full pigment. I guess it was pretty gradual and I was occupied with other areas in life. But there is definite progress.

My hair is actually growing fast, but still not full volume. Head massages--I swear by them. After a little movement I can feel my scalp loosen up and release tension and feel more relaxed. Most articles I have read about hair stimulation recommends massage when shampooing and conditioning. While I have never been able to spend the 10 minutes in the shower, I definitely try to give myself brief massages throughout the day to make up the time. I know it helps.

compromise

So after my last doctor's appointment I was told I can officially go down on my compound treatment to once a week and to supplement men's rogaine (also safe for women). They advised that after 3-4 months or if growth/volume look normal, I can go ahead and stop use of the compound. While I suspect that I will need more time to regain full volume, the idea of a few more months gives me hope of an end. This is now a full year and while I wish I would experience spontaneous regrowth--I must be patient. I had a very extreme form of alopecia so it is to be expected it would not be a quick recovery. At least my spirits recoverd quickly.

I ordered more Morroccan Oil products--shampoo, conditioner and conditioning mask. Love them all! Though not as tingly as my tea tree Boost products, this suite of products are ultra nuturing and smell fantastic. My thin locks are definitely softer but still look fried to me. Better than nothing though. It is really dark, almost all my hair pigment has come back on what I have. Friday--my first highlights! Can't wait!

what to do

My next blog will focus on etiquette. I realize appearance is a common denominator but we can do better in terms of connecting with one another. It's been a while since someone has said something hurtful or stupid lately...until today. I helped a patron and she asked me where my cool, grayish-blond hair was. That is a good question, I replied. Seriously--do we need to be told how to rephrase things so we don't end up with back-handed comments? I guess so. Is she telling me my hair looks bad now? I know I need to let this go.

My own dilemma stems from super dry scalp and hair. I have tried everything! And there has been slight improvement. I use coconut oil, Moroccan oil, mane & tail daily. Plus I condition everyday. The only thing it can be is the medication. The squaric acid/minoxidil compound is hell on the scalp. Is it worth it? Should I go au natural? It is a few weeks until my doctor's appointment to ask for advice. It has been 4 days since my last application. Decisions decisions.

moroccan oil

My friend Kirstan bought this for me. Moroccan oil smells great, does not make your hair greasy and penetrates deeply and quickly. My hair was feeling so dry and within a few days of using this my scalp felt so much softer and healthier. The best part is that I can deep condition in the day without the greasy effect. A little pricey but worth it! Can't wait to see what long term use will do.
I still see lots of shedding but in certain parts of my scalp, hair is almost normal-ish. I think I may have spotted a grey hair today but not sure if it is white remnant or what. No matter what--I will take it. My anniversary is coming up too, almost a year. I still can't believe how far I have come with this.

leave-in conditioner

So I am really excited about my new (new to me) find. The treatment I used tends to leave my hair very brittle and looks a little fried. But it actually works for me because it makes my hair appear thicker. I was at Sally's Beauty Supply yesterday and I stumbled across the Mane 'n Tail hair strengthening, leave-in conditioner. It was only $5 so I thought it was worth the risk. I sprayed it on and not only did it smell fantastic--it made my hair softer in seconds. It also did not make it look greasy or dull. It has healthy ingredients and my scalp felt soft for the first time in months--score!

shedding

So I was freaking out recently because I have noticed a lot of shedding throughout my scalp. My hair tends to fall out in a diffuse pattern rather than large, neat clean areas. There are advantages and disadvantages to this. But anyway I came across an article that minoxidil can cause shedding while stimulating the hair to grow. This makes sense. Again, it will vary with individuals as to how much and how long the process will go on. But just knowing that this is a side effect is comforting. I had recently decided to ramp up the medication because my scalp was feeling so little irritation and my doctor's appointment is not until October. I can feel growth all over my scalp and the shedding has calmed down a bit. I am still wig free but I am open to the fact that this is a process and it may not be over. But I am still feeling fortunate.

kiss my face

So I stopped using the OOKISA products. I enjoyed the follicle serum for a bit but I still have been noticing that my hair seems more dry than normal. The only think that was different is the shampoo/conditioner so I am giving that up and returning it for my cancellation. I have gone back to Kiss My Face. I love their products. The shampoo and conditioner are mild and leave my hair light and fluffy. I am sticking with that!

It still appears to be thinner in some parts as well so I am doubling up on the meditation to relax more. Summer is the time for invites and parties which tend to leave me sleeping less. I need to catch up on my rest too.

back on track

After my set back I feel so much better. My compound medication is now being applied regularly--which is a relief. I feel some more stubble in sparse areas and a little less loss.

I also have decided to try yet another hair product OOKISA. One thing I like is that they offer a "free trial". After 30 days if you do not like the product you can return it with no commitment to purchase. It only cost me a few bucks to get started and I figured it was worth the hassle of canceling if necessary.

It has been 2 days since I tried OOKISA. Most ingredients are very different from the standard grapeseed, jojoba, rosemary standard and the night serum is really fun. You spray a couple of pumps on to your dry scalp and within seconds it starts heating up. The tingling sensation is supposed to stimulate the blood to the scalp. I am not sure if it actually works but I absolutely love how it feels and makes me think its working. Maybe thats worth the price.

Other people liked it too but alopecians have to be cautious.
Product Review
Women's Hair Loss Project

set back

I am not sure if I am being paranoid or not but I feel like my hair is falling out a little lately. A bit thinner in some places that had been covered by longer strands. It is hard to determine the exact cause--although it seems like the perfect storm of letting my compound medication lapse, a gap in yoga and diligent meditation and night time oil rituals combined with a bit of personal stress. Most likely it is all of the above. While I was experiencing a slight funk, this possible regression is a reminder that I need to continually maintain all self-care rituals no matter what is happening in my life(good or bad). I got a bit sidetracked and relaxed from all the work I was doing. Things had been going so well and the slightest misstep caused me to abandon my healthy routine. I start today dedicating more time for my healing--I am just not there yet. I need to be patient during this process and so many others in my life. This is a lesson I keep having to relearn.

beautiful but? F@*& that!

I went out on Saturday night with some friends to a bar. There was a very social vibe and music, dancing etc. Some guy comes up to me and actually says "honey you are beautiful but like, bald." I was initially taken aback, then I patted his shaved, bald head. I said something back like"who are you to make that kind of statement?" (He may have made the comment to be cute. He was anything but.)

What was that about? I have more hair then I have had since November 2008 and it is actually styled. I even had a barrette (a baby one) in my hair to add a little decoration. You know the old adage "if you can't say anything nice..." People can say really dumb things. I wish more people gave thought to their statements.

hair cut

So I got my first hair cut on Friday last week. I forgot how good they felt. When you get your hair washed and scalp massage-WOW! I had my pixie cut shaped up a bit. It looks better and you can see my roots coming in slowly but surely-yay pigment! It looks more intentional monthly. It is not full volume but there are no bald spots at all. It's maybe at 50%, but I had a lot to start with. I am still not feeling the short short hair but being wig-free is priceless. My regiment has slimmed down the basics that I feel are most helpful:

Coconut oil/Essential oil scalp massages
Meditation/Self Hypnosis
Yoga & exercise
Squaric Acid/Minoxidil compound (3-5x week)
Multi-vitamins & Grape seed oil supplements

Now that I look at my list--it seems like quite a bit. My habits have become so routine that it seems natural. Good advice for all self-care.

What does Brooke Shields know?

So I have recently heard about Lumigan. This is a product that was originally used for glaucoma patients and had noticeable side effect of longer eye lashes. After FDA approval, it was repackaged for those in want (or need) of thicker and longer lashes and called it Latisse. My doctor offered to write a prescription and it would run about $30-40. Latisse runs around $150.00/month.

Before AA, I would have thought it was pure vanity. Now I know that for those affected, it is the matter of looking healthy or not. I did lose some lashes and brow, they have returned without pigment. I can easily cover the lashes with some black mascara and brow pencil and be good to go. Two months ago I would have bought the stuff. You can use it on your brows as well. I will consider getting it for my next follow-up appointment.

I would recommend giving it a try for those in need--what have you got to lose? When you stop use of the product, your eyelashes will return to normal. But it may be the quick fix until the AA is out of your system.

There are now commercials featuring Brooke Shields as the Latisse spokesperson. It would be great if it were more accessible to the Alopecian community--that's all I'm saying.

CocoNuts

So, I am in love with coconut oil. It makes my white hair and scalp really moist and is so nice on my face. You melt a little bit and it goes a long way. I have been using it as my all-over moisturizer it works so much better than anything I have ever used--seriously.
The more I research it online, the more I like it. I am even tempted to use it for cooking. I am gaining newly pigmented hair, however fine, but I swear it is due to the coconut oil. Coconut oil has antioxidants and anti-inflammatory properties that soothe the hair follicles and keep the skin looking young. While I have been doing everything in my power to stimulate my hair growth, my skin is softest and clearest it has been in ages. And, as my friend Kirstan points out--it smells like vacation--which is my favorite smell description ever! Hail Coconut Oil!

Checking in

It’s been a while since I have updated my blog. Partially, because I am just busy, but mostly because I am finally getting settled with my new look and new attitude towards life. I have been so happy lately, and I have been having fun with my new super short platinum hair. I was walking in a hip part of town yesterday and saw at least 2 other people sporting the same locks so I felt at home. It’s weird because no one has really ever commented on my hair before. I swear I get like 3-5 compliments a day. It’s amazing because I am not in love with it myself. (In fact while I was writing this someone approached me to say they loved my hair. ;)

I am decidedly obsessed with Whole Foods. I am pretty sure they have everything I need there for my complete beauty regiment. Essential oils in health care like grape seed and jojoba are there, and they are reasonably overpriced. I have been using the grape seed oil there on my face and scalp and my skin has never looked better. The oils have been giving my scalp a touch of acne. My doctor prescribed some Retin-A for it and it helps a lot.

It’s been about 3 months. My hair is gaining some pigment in some spots but it’s mostly fine. It’s thicker on the top of my head than the sides. I put the squaric acid compound on my head every other day. I won’t change anything that I feel is working. Meditation continues to be an important part of my mental health and happiness, lots of exercise too.

Roots

Who knew I would ever be so excited to see dark roots?! I noticed in the mirror last night that there were small swirls of dark hair in the back of my head. I got a hand mirror to double check in the reflection. Mixed in with the white was some dark hair. I asked my work colleagues and sure enough they all saw the dark hairs. It was not a dream. I think I may hold off on the coloring just to see what happens. I am just glad it is seemingly on its way.

It's odd that it seems to be growing when I am emotionally strong. Just last night a woman approached me at work and exclaimed "What did you do to your hair?!" Mind you I have never met nor seen this woman at the library. I calmly said it fell out with no explanation. She asked if I had cancer. (Standard) When I replied no she just repeated--"it fell out." Yes. Then she totally changed gears and asked me if I modeled. It was hilarious. But the remarkable part was that I did not cry, get upset or apologize for having short locks. I have broken down from comments like this in the past and it just sort of rolled off me and had a laugh about it. I am embracing these small victories and reminding myself how far I have come.

I knew it!

Today I went to yet another follow up appointment at the dermatologist. It was a great progress report because since I have been using the squaric acid, my hair has doubled in volume and length. Sure, it has no pigment, but it's real hair! My suspicions were confirmed and the hair is actually terminal (as opposed to baby fine hair that would eventually fall out again.) The AA is still attacking the pigmented cells but not the entire follicle. The doctor has upped the strength of my minoxidil/squaric acid compound. I feel no irritation where I should. While I do think this is aiding in my hair's recovery, I do believe the most important treatment was the reduction in stress and useful meditation techniques. It all is part of the process. I sort of knew I was healing but it was nice to have the confirmation. Yay!

It is also safe to dye. The only question now is--what color?! (Pink, green, blue) Life is too short for boring hair. If I fully recover I swear I will never complain about a bad hair cut or bad hair day.

Kindness

A woman approached me at work the other day and asked if my hair had fallen out. She told me her hair fell out when she had chemo and it grew in like mine (white) and then came in green from the radiation. She used a raw coconut oil that her brother made from Puerto Rico and she offered to bring some in for me. She said it soothed her scalp and helped re-gain pigment into her now amazingly curly hair. We had a nice discussion and two days later she came in with a jar of the oil. I couldn't believe it. It makes me so happy to see that people can be so kind. After all, I mostly notice people staring at me at the gym, wondering if I have cancer. The oil is so soothing and smells so great. I am sure it will be just as effective as the other aromatherapy oils but this one means a lot to me. It smells amazing and reminds me to be open-minded and supportive of those who may need it.

Added bonus: My cat really likes coconut oil. I had some on my hand and she kept trying to lick it off. When I realized what she wanted I put it a tiny scoop in her food bowl. She needed some kindness too ;)

Nurture with Nature

I went to the Bahamas to relax and get out of Chicago for a few days. So far it was one of my favorite self care treatments. My friend Jessica and I were able to relax and soak up the sun, kayak, sail and enjoy the Caribbean blue waters. The air was so different from Chicago, or maybe it was just me. For the first time I went wig-less from start to finish. It felt amazing! My white hair actually has filled in and thickened but its still bright white so it may have appeared intentional. Jessica said it looked "punk". At least 15 different people told me I looked awesome! I was so shocked each time but truly flattered. I couldn't believe how great it felt and how liberating. This experience has translated to home. I no longer intend to wear a wig to hide (but I will for fun if I want to).

Traditionally I have used travel to get in touch with my authentic self. In this case it has done so and given me an inner strength I didn't know existed. I could never have predicted how far I have come in terms of my hair loss and self acceptance. I love it!

Shaitsu

Yesterday I went for a Shiatsu massage. It was fantastic. It is supposed to be like a massage version of acupuncture, but to me it felt like doing yoga without having to exert myself. The experience was so wonderful due to the nature of the masseuse, Eivor. She provides a comfortable mat on the floor and stretches you out from head to toe. Her technique was so calming and zen I felt I could take a nap right on the floor. We spoke a bit about my having alopecia and she was so supportive and encouraging. She reminded me about how interesting this journey has been and how far I have come in terms of recovery in both mind and body. I anxiously await my next appointment so I can see my new friend. I took several of her business cards and plan on encouraging my friends to go to her. She was reasonably priced but worth so much more.

It still amazes me that I have been so lucky through this process. I have been getting all of the right care at just the time I needed it. The law of attraction at work?

Hair update: My scalp has a ton of life on it right now. It is even (though short and fine) seems to be sprouting new terminal-esque hairs daily. Only time will truly tell but I am encouraged by the growth and people like Eivor, reminding me that I am on the right track.

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.