Winning the hair battle with lupus

One of the toughest parts for us gals with health problems is how disease and the drugs prescribed to us affect our looks. Last year in the hospital, I mentioned to the doctor how I hate the way the prednisone makes my skin and hair all dry and sickly. He started in on the typical lecture about saving my kidneys (heard it before) and I cut him off and said "I know I HAVE to take it. But I don't have to LIKE it!"

He was put off by my frankness and thought I was being obstinate (his words), but since I was trapped on the hall (they don't allow you to wander the hospital) and full of drugs that make me not just unattractive but extremely anxious, to the point of near psychosis, and they don't have any available counselors or psychologists in the hospital... well, how surprised can he really be that once in a while someone blurts out the truth about how they feel?

Alright, so prednisone. Can't live with it (or another human being if you're on 40 mg or more), can't live without it (if you have an autoimmune disease or an organ transplant). At least it's generic and therefore cheap. But short-term it has some horrible side effects: weight gain, mood swings, nasty skin, hair loss, moon face, hump back; and long term, some even worse ones: osteoporosis, cataracts, high blood pressure, diabetes. Swap in one disease, get 4 more, and look and feel like crap in the process. All for only $4 (generic) a month at WalMart! What a deal!

I've been on this stuff 3 times now, for about a year each time. I'm on it right now, so if you don't like this blog, don't tell me about it, because I can't be responsible for my reply. Hey- if someone can get acquitted on the twinkie defense or PMS, why not the prednisone defense? It's much more valid than twinkies. For one thing, I doubt the twinkies were forced on anyone as part of a "take this or die " prescription (more like a “do this often enough and you will die”warning). Think about that.

So anyway, I don't know which causes me to lose more hair- being ill or taking prednisone. All I know is I gotta frequently pull out a blob of hair the size of a small rodent from my shower drain cover. My hair looks frizzy and damaged (probably because it is), and as someone who had long luscious blond hair most of her life, this is hard on my self-image.

So here are a few things I've done to improve my hair situation during my stints of illness/ prednisone hair melee:

1) Leave-in hair conditioner. I get this pantene stuff you can just spray in your wet hair before putting a comb through it. It helps the comb run smoothly through my hair without getting snagged, which reduces a lot of damage. You can also buy Paul Mitchell "detangler" which you use in the shower. Works as well.

2) Air or towel-dry hair before blow-drying, to cut down on blow-dry damage.

3) Do not wash every day.

4) Deep-conditioning like hot-oil or 3-minute deep conditioners. they say do it only once a week but I do it twice a week because my hair is so damaged.

5) Cut off the dead ends. Dead, dry split ends do not make your hair look longer, just more dry and unhealthy.

6) Use control paste (a dab smaller than a dime) to make the ends less frizzy. Rub it between your palms, then work it into your hair, starting from the ends. If you get too much of it near the roots, it makes your hair look greasy and unwashed.

7) Use "shine" or other hair gloss. Again, a dab'll do ya, work it in from the ends. This gives your hair back the "shine" it loses when you're fulla drugs and not metabolizing nutrients normally.

8) Use curlers (NOT hot curlers, but the kind you just put in when you hair is damp and leave in 'til it's dry) for special occasions to make your hair look fuller.

9) Use natural products as much as you can. I use healthy shampoo and conditioner that I get at the health food store or through mail order that has no perfumes or other chemical crap, and instead has tea tree oil/ aloe/ other things that are good for your skin

10) I put a water purifier (this is even better than just a filter- a purifier removes more stuff than just chlorine and lead) for my shower. My hair is softer, and is not being exposed to chlorine and other chemicals every time I shower. it took me 30 seconds to install.

11) Get a GOOD swim cap (like a speedo racing cap) if you swim in a chlorinated pool. Swimming is good for you. Chlorine is not. Anyone remember green hair from childhood summers in the pool?

12) Get a wig. if you're in a stage where you've lost so much hair that you can see your scalp, or you have curly hair growing in under your straight hair and it's making the hair stick straight up (been there, done that!), get yourself a wig. Unfortunately, as of now, "Locks of Love" (the free wigs of donated human hair) are only for cancer patients. But some health care plans may cover at least part of the cost of a wig if your doctor prescribes it as a "necessary cranial prosthesis" (I am not making this up). I was not in such a position (though I did have prescription compression panty hose). So I went shopping with my most princess-y adult friend and got myself a nice discount synthetic wig for $40. I still have it. I was nervous that everyone would know it was a wig. The first day I wore it out, the clerk in the store commented on my great haircut!

13) Then, of course, there are hats and hairpieces. One of my friends who has thin hair - not ill, just born with thin, lifeless hair- had an especially cute 'do one day. I complimented her on it and she told me it was a hairpiece she bought- at the dollar store! For a dollar! I've also seen long and short ponytails at the drugstore for quite reasonable prices. This for special occasions, especially if the hairpiece is heavy and pulls on your natural hair.

14) Color it. Sometimes certain drugs keep your hair from absorbing the dye. And some folks will tell you shouldn't be exposing yourself to more chemicals while you're sick (what do you think all those drugs are?). Maybe they're right. But, looking in the mirror and hating my hair every day isn't good for me either. The way I feel emotionally affects the way I feel physically. And not wanting to leave the house because I feel so unattractive is also bad for my mental health. So for a $10 bottle of highlighter and an hour or so of my time, I go sit outside or in the garage so I don't stink up the house, and change the way I look. It makes me feel more in control of my looks, and I think it came out pretty good this time!

15) Fix it from the inside: take flax seed/ flax seed oil. it makes your hair grow faster and gives it shine. And, it helps keep your regular! Wahoo! A quality mutlivitamin is also a good idea.

16) do NOT get hair extensions or weaves, unless you have permanent hair loss. in the end, getting extensions does a lot of damage to your real hair and eventually you have to cut it even shorter. for those of us with hair loss due to Systemic lupus and/ or prednisone use, the hair *will* grow back. Not necessarily the case if you have the cutaneous (skin) form of lupus.

One thing I regret is not having the brass to tell my family I did not want to have my picture taken the Christmas I was wearing a wig. we only get them done every 10 or so random years. Why did it have to be the year I was sick? Why immortalize that? I say this for my own ears/ eyes as much as for yours: it is your right to say "I'd rather not have my picture taken today. Can we do it on a day when I feel better so it will be a good memory?"

Many good hair days to you all. If you have ideas, please leave a comment!
Carla
www.thesingingpatient.com