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.

Self-Hypnosis

One of the things that is great about my job at the library is I have constant access to information. There are so many books available to help when my curiosity is piqued.

I have been working with my therapist on relaxation techniques but I do find it hard to focus on my own. I was panicking the other day because I see more of my scalp and felt deeply saddened by it and I could not relax. With weeks until my next appointment, I picked up a book about self-hypnosis called Miraculous Health and again there is this theme that the body has the power to heal itself. That is so fascinating to me. I know there is truth to that, I just wish that our culture embraced it a little more so we can be reminded of it. I have watched The Secret and I do believe we can use our mind to do remarkable things. Its just that you have to really work at remembering and incorporating those techniques into your life. It's hard! I have been really taking good care of myself lately and luckily I have the time and resources to make my health a priority. But it does take a lot of effort as well.

Hypnosis is really just trying to get in close touch with your body and with concentration, reverse the negative effects. For short periods of time when I have a moment to relax I sit and focus on me in the future, with all my hair. I tell my body to fight for my health and to get my hair back. I am hoping that I can get better at these techniques so my recovery will be speedy. But I am reassured that hypnosis is an important part of healing and healthy living. I feel it!

Useful information

Well, I still have yet to shave my head. This is such a weird disease--it totally messes with your mind, its cruel. The one thing society is completely obsessed with, my body is rejecting. It's consuming and I am boring myself with it. I have to keep forgetting about it and get on with my life. It is getting easier though. I don't cry anymore and try to make jokes about how ridiculous this is. I want people around me to laugh about it too. I have started reading material other than self-help which I think is a good sign. But every once and a while I will frantically search the Internet and databases for information I've missed. Some miracle cure. I imagine if someone found it he/she would be a millionaire and everyone would be using it. But that's just how unpredictable the whole thing is. Every case is unique and no one knows what the hell is going on. I did come across something today that said it usually takes 3 months for re-growth to start. That is helpful if true. I would like to hear more things like this so I know what to expect. I need to start asking these questions to people who have gone through it.

I have been given many gifts during this process. People in my life have been enormously supportive in unexpected ways. No matter what my future holds I know that I will be a more sensitive and empathetic person. My friends and family are teaching me how to respond when others are experiencing hardship, and how not to. Perhaps that is the most useful information of all. Thank you thank you thank you!

Still Fighting

Emotions have been mixed lately, but mostly I feel really healthy, really good. I continue to do what feels good to me: working out, acupuncture, head massage, tanning bed, vitamin regimine and now, aloe vera juice. I am not super strick with my diet, but I am as healthy as possible without denying myself any pleasures. My therapist advised me to keep a list of positive things in my life. I remind myself daily, sometimes hourly, of how grateful I am but something prevents me from committing it to paper. I am seriously re-considering the shaved head. The remainder of my hair looks pathetic and I like the idea of concentrating on the growth, rather than the loss. Maybe this weekend...

I also joined a social networking site Alopecia World for those affected by hair loss. It's pretty cool so see so many people in the world going through the same thing. It's nice to know I am not alone out here, but I still straddle the line of complete acceptance. I believe my hair will grow back and I will feel whole again with a brand new perspective on health and happiness. (Can't I have it all?) I am confidant that at least the latter will come true.

I am thankful for so many things: my health, my family, my friends, and my ability to take really good care of myself. (baby steps)

Transitional Me

I noticed with the weather so cold and dry, my hair is really starting to fall out again. My elbows itch too. When I first noticed my symptoms, my elbows were covered with eczema. It has went away and now it might be back a little. I am so conscious of everything going on now and taking extra good care of myself. Aileen cut my hair even shorter yesterday. The cut is cute but I hate it on me. It might be OK if I didn't see my scalp, but it is what it is now. I am just getting used to the new me, transitional me, I guess.

I bought a really cool headband at Ulta. It has golden blonde hair attached to it, straight and perfect. If you saw me 2 months ago-you would think this was my normal hair (but better). It looks really cool and I wore it out on Saturday night and loved it. I decided to make it my "going out" hair. Getting ready will be snap!

Today I am wearing my other wig. Blonde with layers. After the initial self-counsciousness, I am OK with it. If anything it looks too good to be my hair! Genae said someone told her that "every woman should have a great wig in her wardrobe". Now I know what that woman meant. It is more fun and easier than I thought. 2 seconds and you are done. Viola!

Giving Up (but in a good way)

I have done as much research as I can possibly handle and I finally satisfied I am doing, have done, enough. After examining my recent doctor's bills, I decided that I have spent enough too. After insurance, cortisone shots still cost $250 and really only helps to stimulate growth. Plus, it's no guarantee. That is money I can spend on a plane ticket to sun my scalp somewhere warm and relax. The only worthwhile treatment at this point is to continue with the therapist to help work on my issues of anxiety and how I handle stress. I never want to get to a point again where I feel overwhelmed. I feel really good about my decision and relieved that I can focus more on things I can actually do something about--like planning a beach vacation...yay!

Just Tired

I am just kind of burned out right now. I am no longer worried about regaining my hair, I can feel spikes all over my scalp indicating it coming back. But I am feeling so tired about it all. Part of me is just tempted to just be done with it: not to read any more books or articles, no more daily scalp treatments, just relax and wait patiently for this to blow over. I keep looking for new lotions, new shampoos, alternative treatments, anything to fight for my remaining strands. It's tiring and getting expensive. It's not in my nature to be passive but it would definitely be the easiest and least time consuming. But that is just me today. I will probably feel differently in an hour or two.

It's all connected!

It seems so weird but when I first got diagnosed and they recommended therapy, I didn't see the point. I went with an open mind because I felt so desperate for a cure but I didn't really believe that it had anything to do with the alopecia. I am now really believing that the holistic healing directly applies to me. According to Grossbart's findings, something like 95% of alopecia outbreaks are brought on by stress. While I might be genetically pre-disposed, the tension and tightening of the scalp could have been all my doing (not intentionally of course). So in that case--how do I turn it around? There was an exercise in the book that asked you to think about 10 things that are positive or have improved since my outbreak. Would you believe I had listed like 15? I couldn't believe it! This inconvenience has forced me to focus on so many other things in my life that I do feel about myself and my life. I probably would not have admitted it before but I used to have a lot of negative self talk. There was always this constant pressure within me to be perfect and have my life totally organized. Now that my secret is out--I am not perfect, I can't do it all myself--it can finally move on and just accept myself the way I am.

I have also been reading Louise Hay's You Can Heal Your Life. She echos much of what Grossbart says regarding disease and emotions. She says that hair loss is usually associated with anger and tension. By letting go of the anger, tension, negativity, you can allieviate the scalp and beging to heal everywhere. It makes so much sense. I needed the books and the therapy to get me to that point.

After reading and processing this, I woke up today with almost no hairloss. Yay!

What your skin is trying to tell you

I am currently reading the book Skin Deep by Ted Grossbart. Having only just started, I am already fascinated. Grossbart is a clinical psychologist and has discovered that there is a strong link between emotions and skin conditions. Grossbart sights patterns in patients history to their particularly bad outbreaks of eczema and acne etc. I find this so interesting. He even likens emotional issues to allergic reactions from a bee sting. People who are allergic to bee venom have been stung so much in the past that even one more little sting could cause serious, even deadly, harm. This could be true of those who suffer from chronic skin conditions. Which basically means that outbreaks can be triggered by cummulative stress, not necessarily one traumatic incident. It is interesting to me because I have never had alopecia in the past, but I have had a lot of stress in my life. Incidents this summer were really bothersome and I was pretty stressed. Perhaps this is my bodies way of saying--you have been through enough. Either way--I am listening to my body now! I am trying to relax more and not take on too much, even in my recovery.

Pins and Needles

Yesterday I went to an acupuncturist. It was kind of spontaneous but I thought I would give it a try. The place is Lincoln Square Acupuncture and they fit me in right after work. The staff was really nice and calming. I sat in this chair with a heated blanket while I got my health consultation. Nothing they told me seem to conflict with any western medicine practices and I wanted to give it a try. The woman stuck these tiny needles in my arms, legs and feet. She basically touched me a few times and it was over. The needles are so tiny that you do not even feel them. After she was done she told me to sit and relax for a 30 minutes which I was glad to do. Next she took to me to another room where she tapped my head with a tiny hammer. That didn't hurt either. Her voice was very soothing and she recommended staying away from spicy foods. They also gave me some herbs and I paid on their sliding scale which was a relief as well. She said that their philosophy of Chinese medicine would help return me to a state of health. The nap part alone was worth the money. The experience was really refreshing. I have plans to return and get my chi on, or cleared, or whatever. If my hair grows back I will consider it an investment. I don't mean to come off as a non-believer, I believe the body to be amazing and have many self-healing qualities. If this works I would definitely consider going there for other ailments. But, one thing at a time.

Acupuncture: Can it help?

Being Grateful

Amy suggested that I put the word GRATEFUL around my house as a reminder to be grateful of all of the positives in my life. I went around with my yellow post-its and stuck them to the usual suspects: fridge, microwave, mirror, armoire. It really works. I see those post-its all over and I have to look at them. First of all because I am such a neat freak and I want to tear them off the surfaces. Secondly, they are bright and my eye is drawn to them several times a day. I actually think about how grateful I am at that moment for everything in my life that is going right. Today those notes annoyed me! Today, being grateful is a challenge. My hair is withering away and I cannot hide in my bed until its over. There is so little I can actually do. I still have to go to work and function like normal, feeling anything but. Yesterday I was positive and thought "When this is all over--I am going to feel like Wonder Woman--so healthy and strong from all of my treatment and self care." But I am still not Wonder Woman, not yet. Today I will try to be thankful for Obama's election and the sun shinning.

I Love Halloween!

I do love fall weather! The leaves, the colors, scarves hats and sweaters. I also found a new appreciation for Halloween. For the first time in a while, it felt good to dress up and not look like myself. A few friends and I wore wigs and somewhat tame costumes. We had a blast! My intent was to create a buffer for my wig wearing days and while fun, I am not entirely sold on them. It feels different when you are not trying to pull off fake hair for your own. I am oddly liberated with my super short cut right now and I am not sure if I will ever be ready for a wig. I am slowly, just getting over the loss. My hair is really short and thin. So what. The urge to explain what is going on and why my hair looks like it does feels exhausting. Not that many people really notice anyway. I love wearing hats anyway and look forward to adding more to my collection.

Bad Hair Day

I dread washing my hair these days. It's a reminder that what is happening is real. I massaged my scalp last night, otherwise I would not produce enough oil to require washing. Unfortunately I cannot go to bed with greasy hair. I put a tiny dab of shampoo on my hand and rub it into my hair. I can feel every ridge on my scalp. My hair is so thin but small clumps still poured out into the tub. My foot quickly shoved the hair down the drain, seeing it makes it worse. I tried to relax so that I could try and keep what exists in place, but my heart just pounds harder. I'm not sure if it has to cycle out or if I am just getting worse (alopecia totalis). I can feel tiny spikes of hair starting where they injected the cortisone. Not sure if its false hope or not.

Emotions are complicated

I love therapists! When they are really good at what they do, the world before you seems to make much more sense. I thought I knew what stress was, but it turned out stress for me is entirely different and very personal. I was putting a lot of stress on myself, I still am.

My therapist last night seemed to think that while my cognitive skills are strong, there is still some work to do on my emotions. Whether or not this will actually improve my follicle challenges, I believe that she can help me make it through this ordeal.

I went to bed last night with a sense of hope, and felt thankful that there are so many people around me willing to help. I woke up with the same feeling.

Hypnotize Me

So today I am going to see a hypnotherapist. This doctor was recommend since she is a specialist with conditions of this nature. This usually happens to children. ( I knew I was still a kid!) I can't believe she fit me in so quickly. I am excited and anxious to see what she will say. Will this type of treatment help me relax enough for my hair to grow back? Truthfully, I didn't know I was really all that stressed to begin with. My biggest problems were finding my next vacation spot and perhaps a nice boy to date. I am aware these are not worries. But I am going to find out what she has to say.

There are a few articles I have read online linking hypnotherapy as a treatment of alopecia.

What is hypnotherapy?

Psychology Today

Follow Up Visit

Yesterday I had a follow up appointment with Dr. Lio. Aileen went with me for support which makes me again thankful for my friends. He was able to take out my stitches from my biopsy last week and answer my questions.

Will my hair grow back? He said all signs were positive that it would. While I am in the more severe category with hair loss, my eyebrows and eyelashes are strong. Nails are in good health and the smart hair (hair on the back ridge) is still fairly thick. All good signs. He said he would not give me full-throttle yes because the disease is unpredictable but I should remain hopeful and take charge of my treatment. Previous cortisone shots are working and hair is growing in treated areas. Fingers crossed.

Was this an allergic reaction?
No evidence points to allergies in any studies.

Is there any diet restrictions with this condition.
See answer above.

How often will I have to do follow-up with for cortisone shots?
Once a month, hopefully no more than 3 months. We should see growth very soon.

What other options do I have for treatment?
Besides the scalp massages, studies have shown hypnotherapy to work. Cool!

At this point I will try anything. I told him I would chant, pray, send smoke signals and provide offerings to the gods!! I will go and get hypnotized to see if there is any stress I am repressing. I feel relatively un-stresed besides the fact that my hair is falling out.

This is all good stuff. I am going to still workout, do yoga and try to not stress out--which is proving to be stressful! Crossing my fingers and hope to relax and help heal my foxxy alopecia.

Wigging Out

Last week Renata and my mom went with me to pick out a wig. I had lost about 3/4 of my hair so I estimated it was only a matter of time. Luckily, I had tons of hair to start off with. We went to Because of You Hair Enhancement in Oak Lawn. Joyce was really nice and understanding. I can't emphasize that enough. After trying on a few I picked one I could live with. I pick it up Saturday. Thanks to my mom and Renata for making me laugh--and holding my hand when I cried.

What is up with my hair?!

Exactly four weeks ago I saw a bald spot on my head. I had some friends check my head, panicked slightly, and then found another. I thought it was strange and made a quick appointment at a dermatologist office. Going to the doctor is something I never do. I was diagnosed with alopecia, probably stress related, given a couple shots of cortisone and went on my way.

A week later more and more hair fell out, ridiculous amounts of hair. I called other doctors, more appointments, blood work all normal. Hair loss is not a symptom.

Finally my gynecologist recommended I go to Northwestern--great move. From there I have met with a team of competent and caring doctors which was a great relief. They diagnosed me with Alopecia Areata, an autoimmune disorder where the body mysteriously attacks its own hair follicles. Its sometimes triggered by stress but otherwise the origins of the disease is unknown and there is no cure--only treatment(Awesome!)

Within the last few weeks my scalp has gone through a severe transformation. I chopped my hair short (something I have been flirting with anyway) and now I sit and watch patiently for signs of improvement. I have run the gamut of emotions from Why me to Fuck it it's only hair and I believe I am about to experience a lot more.

This blog serves to document my journey, aggregate information about the disease for my friends and family, and help me remember to live a more thankful, joyful and appreciative life. After all, I have so much to be thankful for but it took a health scare which prompted me to take a more pro-active approach to enjoying my life.