Spoon Lady Speaks...

((((hugs))))

christine, sorry you're feeling so blue! Remember, you are beautiful on the outside and in the inside. Truly. Also, you're a strong and powerful woman and mother. You've done the best thing in the world: have a baby! In the meantime of all the craziness, do some crafts (wink!) and read some awesome books (i can recommend some!) and watch some classically funny movies! We all think you're beautiful!

I don't know if you ever saw the show "Dead Famous" but one of the hosts, Gail Porter suffers from alopecia and has lost all of her hair. Gail is beautiful. We would watch the show for fun on Sunday nights and we started to notice Gail was wearing hats a lot until finally she was on the show totally bald. Our first thought was cancer, of course, which is what led me to Google her and find out what the deal was. That's where I found a couple of articles. She is beautiful and the things she has to say about her hair loss are absolutely inspiring. Here are a few links (the first is a pic):
http://www.baldiness.com/wp-content/uploads/2007/01/gailporter_3.jpg
http://findarticles.com/p/articles/mi_qn4161/is_20051113/ai_n15840653
http://www.guardian.co.uk/media/2005/nov/07/broadcasting.comment
I don't know of much to say that would be comforting, Christine. I know I hate to hear you sounding so discouraged when you have provided strength and encouragement to so many with chronic illness. I thought sharing Gail's story might be the best thing to "say".

Big hugs!
Kim

(((Hugs)))
Christine,
I have a problem with my hair falling out too, it comes and goes in cycles and I agree that it is very frustrating and spoon-sucking (especially when you have to spend MORE spoons getting ready trying to hide the bald spots!)
I started using a shampoo and conditioner for people with medical problems, they sometimes even suggest it for people on chemo to help prevent hair loss. It is called Nioxin if you wanna check it out!
I am so sorry!
Love and spoons!
LA

I think it would be difficult to be bald. I don't think we have to "loose ourselves" or our strenghs like Samson if we loose our hair. Hang onto the true core of you.

I hope the medicine is improving other aspects of your health. Take care.

Christine -- I am a fibro sufferer who is a huge fan of your Spoon Theory and I just became connected to butyoudontlooksick.com. I got your daily update and you did a really great job! I am just getting into a cold (BLAH!) but am "juicing up" to stay hydrated and eating warm comfort foods.

I really hope that you begin to feel better soon and hope you realize that you are beautiful whether you have hair or not. I can say this with absolute certainly because only a beautiful and caring person could come up with a "theory" that has made life bearable for so many chronic illness sufferers.

While the winter weather makes me shed a lot, I am certainly not in your situation, but please know that I sympathize. In fact, just last week, I donated 10" to the Locks of Love foundation (my 4th donation, and I've donated approx. 50" of hair to date!). My new "do" is markedly shorter but I know that my loss will benefit another. Please consider my donation also as an act of sympathy and compassion for you and others who experience hair loss (among the other things we unfortunately deal with) because we are as one fighting for recognition and acceptance of these horrible conditions.

::HUGS:: (super gentle, of course!)

Hello, I got here through Grand Rounds, but we're actually Facebook friends through an invisible illness group, as well as a lupus group.
Small world.

I have the hairlosss issue as well.
Mine, gets worse with a cold ... or any lupus flare ...going up and down on prednisone ...

It started with the initial start of Imuran years ago, then kind of stablilized. Then when I switched to Cellcept ... it really skyrocketed.

I started on 60 mg prednisone last week ..and I am loosing it by the masses ... sigh.

It seems any assault to my immune system will trigger it.

It is hard to not feel the way you do about not loosing a piece of you with each strand of hair, but, it isn't true ...the true you is firmly attatched to your soul ..and that, cannot be touched by anything these stupid diseases or medicines can do to you.

Hello Christine~
I to have just meet you her and on face book. I'm still getting to know you as a person. But remember that your true self is not on the out side. it's what is in side. and from what I have seen of you, read of you and am learn from you. You are a very strong and loving person. So even if the out side is changing the inside will never change.

I am brand new to this site and am already deeply touched. I was diagnosed with UCTD about a month ago and after struggling with thyroid disease for several years previously, I can empathize quite a bit with the hair loss dread. I used to have hair that would break hairbands and was so think you couldn't see even the pale color of my scalp. That was a very long time ago. Now I have those sad mornings of trying to get limp hair to look like it has some life and have to clean the shower drain every time.

It's true what everyone says about inner beauty being more powerful, but I know there are always those hard days. Just know that every time someone finds this site, you are touching another life in a powerfully positive way. Keep it up!

P.S. Bumble and Bumble makes a line for people losing hair that has so far added some thickness...

Christine, its first time I got on website, but I must say, i really admire you and your strength. I am Czech medical student and I think I can imagine a little how hard it must be for you/maybe not in the real fullness, but after reding your spoon theory, I got a bit closer to understanding and empathy topeople with sucha hard condition. I think you are doing great thing and I wish you lot of strength and happpiness in your life. Respect.

Christine~ I can totally relate on the hair loss. My hair is finally coming back. I love your spoon theory. I forwarded to my family & friends. I know they will not fully understand but it will give them the idea. Take care and God bless!!

I'm not a sufferer of lupus or hair loss at all, but I am a pile of emotional empathy, and it upsets me when I hear about people being unhappy, especially about their physical appearance. We all feel like it SHOULDN'T matter what we look like, but when something is happening to you that makes you feel less glamorous or less appealing physically, it is emotional.

I met a woman on the bus once with cancer. She was winning the battle, but losing her hair due to chemo. I sat next to her on the bus for almost six months before I got up the nerve to comment on the fact that she not only had a different color of hair every day, but different lengths from short and spikey bed-head to waves down to her butt. I thought it was awesome that she was so daring.

What I didn't know that she was doing this as a way of turning the trauma of "losing herself with her hair" around. I've only just stumbled along your blog, and truthfully, I have no idea what sort of a person you are other than what little I have read, but perhaps trying something like this out. Maybe get a wig of a hairstyle that you have always wanted to try out or something... I know they are not cheap at all (yikes) but you can't put a price tag on your happiness and sense of self.

Best Wishes, There are always better days :)

Love,
Kambrie

Hi Christine, just found your blog ... I found your actual site about a year ago, watched a TV clip with you, and said to my husband, "This girl from Long Island is absolutely ADORABLE!!"

Anyway ... didn't you recently have a baby? You know much more about all this than I do, but I also had severe bald spots a few months after I gave birth. No one even knew I had Lupus at the point. I thought the hair loss was from Cytoxan I was taking because of kidney problems.

I spent about three months pulling all the strands up into a very thin bun, and feeling disgusting everywhere I went.

Finally I had to cut it off and start wearing a wig. The wig was GREAT! I felt very pretty in it, it was very comfortable, and it was easy to take care of. Here's a picture of me in it:

http://beanmommyandthethreebeans.blogspot.com/2007/08/blog-post.html

I wore it for nine months. I had several people say to me, "Wow, you got your hair done! It looks great!"

Now I've been "off the wig" for seven months. My hair looks perfectly normal so far. (Although way too damn short!) My new doctor said that if it ever happens again, "We'll treat it" although he did not give details.

If you want to check out wigs, check out http://www.headcovers.com/

BTW, I also tried the Nioxin and did not find it helpful.

After I had my daughter, I had a lot of complications. Hair loss was one of them. It took 2.5 years, but I finally was diagnosed with thyroid disease. Has your doctor checked your thyroid? There is a complication after childbirth known as postpartum thyroiditis.

Even the standard TSH test doesn't always give a good answer. Go to www.stopthethyroidmadness.com for more information.

Christine,
This has happened to me as well and I went to see my
WONDERFUL DERMATOLOGIST-
did I mention HE was
WONDERFUL...lol... well ,
HE IS...and he gave me
prescription shampoos and medications as well- which helps so much. If you want to, please feel free to contact me via my email and I will gladly give you my Doctors name and phone #..He is located in RVC,NY. and I have so much faith in him that he will be able to help you- as he did me ! I know him very well from working in the medical field for so long, if you decide to I can possibly get you an earlier appointment, even if he is booked for a period of time too , since he is so well known.

I too am losing my hair. I have bald patches, so I keep parting it different ways to hide them.

I have also lost about 75% of the thickness (or volume) of my hair.

I almost cry after every shower when I see how much hair is in the drain. I could make a wig after one shower.

Is there anything we can do about this.

I feel your pain. I too feel ugly. I am always in a cap, bandana, or winter hat, depending on the weather. I have become a big fan of hoodies.

THANK YOU SO MUCH for posting this. It helps so much to know I am not alone. I don't know anyone else who has these symptoms. I have added your blog to my toolbar. I plan to visit often.

Very nice to meet you, Christine (Spoon Lady :)

GIANT HUGS,
Lisa

I know this post is older, but it touched me. I hope you are doing well. You seem like a strong and wonderful woman!