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adl011
03-23-2009, 09:19 PM
Okay, I know compared to other really bad and awful symptoms we have, hair loss is not exactly the highest on the priority list, but it's really getting me down. I have always had very long, thick, soft, pretty (not to toot my own horn) locks of red hair. Now the "wonderful blessing" bestowed on all of us called lupus has decided to make my hair fall out. I have a bald spot, well more like a bald line down my part on my head. It is really an inch wide...I measured it today, and it is only getting worse. My hair is very thin, brittle and coarse now, not to mention the fact that it is falling out in handfulls. I actually measure it by handfuls now and not strands. It's really upsetting me. The aches and pain, fatigue, neuro issues (to an extent) and rashes I can hide (even the face rash, by saying its sunburn), but my hair I cannot hide. I am seriously contemplating shaving it all off and buying some wigs. My fiance doesn't want me to do that thou because he loves my red hair. He also is afraid of how I will feel when it starts to grow back. But right now I'm so stressed about going in public. I'm only 5'3" and most people are taller than me. Some of my friends have even mentioned that they noticed my hair is falling out. I'm so unhappy with it right now. My scalp hurts so bad and my arms are just so heavy that it's even hard for me to brush the hair, let alone fix it to hide the baldness. What do you guys think, would getting wigs be a good idea? I'm getting married in July, so any decision will definitely affect that, but if my flare isn't under control soon, it won't have time to grow back any way...I'm just confused and upset and lonely and getting a little depressed about my hair. Any other suggestions besides whacking it all off, or is that a good idea, or any ideas, thoughts, words of wisdom, experiences would be nice to read. Thanks for listening. Talking is making me feel a little better about it.

~Amanda

P.S. sorry if there are any typos...brain and fingers aren't coordinating right now too well

sick n tired
03-23-2009, 11:01 PM
Hon...this is really tough on you...all of this. You are with a very special man to be there for you he must really love you...I think you should maybe cut it in a pixi cut for now and when if the meds that the doc puts you on doesn't stop the loss then around the end of May or in June, shop for a wig that looks like what your hair used to look. Take your fiance with you so he can help perhaps with it.
I do know there are going to be many on here who have been there and done that with the alopecia. The hair does grow back...Amanda...I wish I could take this for you. I am just thankful that your Fiance is there for you..praise God.

Danica01
03-24-2009, 03:56 AM
Amanda.....my heart is breaking for you right now.I know what you mean when you go on about all of the things we can hide from others. That allows us to personally deal with the disease without the entire world looking at you. You cannot hide the hair loss. This is one of the most heart breaking symptoms we can have. I would just focus on resting and getting your self healthy for you wedding day. Talk to the doctor about meds that can help you out a bit faster than normal. He should have an idea..........make sure you are relaxing and resting!!!!!! When your wedding day gets closer you will be able to evaluate he situation and make a choice in regards to your hair or a wig. No matter what you decide it is your day and you will have a night to remember for the rest of you life and in the end remember the day goes by so fast and what you are left with is a marriage.......focus on that end result and you will be very happy no matter what!!!

mountaindreamer
03-24-2009, 05:07 AM
hi amanda,

i too have really long hair that has always been a healthy, shinny, silky, asset for me. i too am seeing that the part in my hair is gettting wider and wider. i have not cut my hair, but instead of parting it, i pull it back so that the part is not so visible. i also wear bangs now to cover some of the thinness.

danica and sickntired were both so right....sounds like you have a great guy, and i am so happy for you. also, rest and get ready for your wedding....you can decide about the hair as the wedding day gets closer. Maybe you will decide to surprise everyone with a new "do" on your wedding day.


i am reluctant about going to a wig, because my daughter's head was so sensitive during her cancer and chemo that wigs really hurt her scalp. we have many nerve endings in our scalp, and chemo makes it very sensitive. sometimes even brushing my hair hurts my scalp.

keep us posted about your upcoming wedding. i love to hear about wedding plans. enjoy this time, it will never be here again.....

Angel Oliver
03-24-2009, 07:18 AM
Oh Amanda,

I feel for you. Just see how the meds go, rest and for now leave it.If you are getting married soon, go and speak to your hairdresser. They should be able to help you for the wedding.They can stick false hair and everything these days to cover the bald spot. You have enough to worry about as it is.So for now, just leave your hair, enquire with hairdressers to see which ones can help. I know a hairdresser i go to put this net thing on your scalp then attached hair to it.It looks so good and may make you feel better for the wedding.But its expensive i think.Just a thought.
Then afterwards you can decide what you want to do with your hair.It will grow back.Just unfortunate its happening now.
Hope this solution gives you confidence and helps you in a little way to feel a bit better.
Gentle hugs.
love
Angel.xx

adl011
03-24-2009, 10:14 AM
Thank you all SO much. It really does help to have encouraging words. It's just so frustrating some times. I am just kinda being a little irrational I suppose. Today I wore a cute bandana that one of my friends gave me. She's great, and she even bought me some make up to help cover the rash. She's been so supportive, as has my fiance. I am very lucky to have them in my life. I just needed to vent a little I guess. I had a nice little emotional breakdown this morning, I bawled like a baby, and now I feel a little better. Sometimes it's nice to have a good cry. thank you again so much, you guys have been a God-send to me in this tough time in my life!

~Amanda

debbie-b
03-24-2009, 01:31 PM
Amanda,

I agree with you, loosing the hair is pretty bad. I only get thinning hair, not as bad as yours, but it is very bothersome.
I hope that everything goes well for you and you have a wonderfull wedding and a even better marriage. Having a great husband( partner), is very important, so that you don't have to face lupus alone. I don't know, how I could handle all this without my husband.

A gentle hug.

Debbie

KATROACH1972
03-24-2009, 01:45 PM
Hi, sorry sweetie! i like most of everyone else have the same problem. I wondered if you are taking Methetextrate? I did for 7 months and my hair fell out faster then normal! Its been 3 weeks now since I stopped taking it and its slowed down now. Just wondering if you were taking that. Have great day. hugs

pamjw
03-24-2009, 02:04 PM
Amanda
So sorry about your hair, maybe your hair will be fine by July.
I have been having thining hair and have just started with a small
bald spot and a widening part. I have just purchased some expensive thickening shampoo I saw on TV. Maybe it will help, I will let you know if it works.
I too have a wedding
this summer, in June. It is my sons, but I still am worried about my hair and face also.
I like the idea that was given to try a new style, new part, or even bangs!

Pam
:hissyfit::skeptical:

BonusMom
03-24-2009, 04:04 PM
Although I still, thankfully, have a full head of hair, I can empathize what you're going through with thinning hair.

So much of our identity is associated with our tresses. I've had long blonde hair all my life and would probably be just as devastated as you, but I would attempt to take the advice I give my husband and not dwell on what I don't have (or am losing).

Superman, who is receeding on top, worries about his decreasing amount of hair. I could care less if he's got a chrome dome, carpet strip or what have you. I've told him that bald men don't waste their hormones growing hair, but he's still pretty bummed about it.

Last week, sitting in traffic, a cute little convertible was in front of me. The top was up and I couldn't see the driver. The license plate holder said "With a body like this, who needs hair?". I shared it with Superman and he actually had a good chuckle about it.

My point is-attitude is everything. Embrace the opportunity to try different styles of various lengths and colors with your natural hair or with hair pieces. Try extensions. There are several African American women in my office who change their "do's" nearly every day. Nobody gives it a second thought. I admire their creativity and acceptance of wearing wigs.

You will be an absolute stunning bride, with or without your "own" hair. Your fiance obviously loves you regardless of your tresses. Your radiant smile will capture everyone's eye as you walk down the aisle. And, if anyone is caddy enough to mention the change in your hair, they probably shouldn't even be at the wedding.

ashleybaby715
03-24-2009, 05:36 PM
awh hun i feel for you! just know that you have all of us on here for support for you!
stay positive. and dont rush to cutting your hair off. just make sure you take extra good care of it. try a deep conditoner, to try and strengthen your hair so its not as weak. i know that when i take a shower, there is always hair in the drain trap and hair in the brush/comb when im brushing my hair. but thank god that my hair was really thick and long before i got sick, so other people really can't tell that i've lost any hair, but i can because it feels so much thinner.
just stay strong! if you need anything, just message me!

adl011
03-25-2009, 12:34 PM
Okay guys, here's a bit of an update. I'm very, VERY sick today, and this week really. My hair loss has gotten worse. It is now about 2 inches wide and all the way from my forehead to the end of my natural part. There is not enough hair left on top to put my hair up in a ponytail to cover the hair loss. I'm still trying my best to cope. I have bought some bandanas and have been wearing them. I have my wedding shower this weekend, and while that is exciting, I'm nervous because my family, future in-laws and soem of my friends have not seen me in a while. They will all be there, and while I know they will understand, and probably not even say anything, I'm still nervous. Also, I'm having some weight gain issues, which is not normal for me, so none of my clothes (except work-out clothes) will fit me. It's very frustrating. I'm dealing with it, thou it is hard. I hope everyone else is feeling well.

~Amanda

Angel Oliver
03-25-2009, 01:17 PM
Oh i am so sorry to hear you feel so sick.Listen, you decide whats best for you with the hair.Me personally when my hair fell out, i went from long hair to a very short cut, a bit like posh.I did wear bandanas which make you look so trendy.As devastating as hair loss is, you do adjust quite quickly, if you have it short.BUT, you have to know hair does grow back as well.Yes its happened at the wrong time, so close to your wedding, but even i realise from your posts, it causing you more distress.So you do what you feel is better for you. For your wedding photos you can always wear a wig if need be.But i have been through it.At first like you i was so upset .But the more i left it the more distressed i became.I opted for going to the hairdressers and had it cut very short and shaved at the back.Oh the cold wind felt strange and i could actually feel my skull, so weird.But, after a couple of weeks, i got used to it and it became the best thing i ever did.Because i have chronic fatigue, i am having difficulty holding the hairdryer up to dry my hair.So in the next few months maybe having it all cut off again. Its taking me along time to do it, as i am growing it you see.I have thick course curly hair and want straight hair.So when i go short again, yes its not what i really want, but it will be less hassle to style and dry and will take less time to do. This is just me.I had short hair for many years, so for me i think as i am sick with no energy and also having a bit of hair loss again, its the best thing for me.
Just remember, it will grow back if you do have it cut.There are wigs,bandannas, caps and hats to wear now.How trendy you can make yourself look.Have a look in my photos of my many hair styles, when long and short.This time im gonna have it like Posh out of spice girls....so i'll be Manchester Spice!!!! I had it a bit spiky last time.
Sending you gentle hugs and hope all works out for you with whatever you decide.xxx

love
Angel.xxx

lucky7
03-26-2009, 01:59 PM
Hi Amanda. Im so sorry for what youre going through. I can relate to some of it. Lupus does change almost everything about you, inside and/or out. Your friends and family wont care because they love YOU. I know its hard to experience these changes but thats why you need to do what is in YOUR power to do to feel better. Have fun and buy some wigs,seriously! My husband jokes and tells me to just for FUN,WINK WINK! LOL Get in some exercise each day if you can. Even a little is better than none. Its recomended no matter what your illness. It HELPS, believe me, youlll feel better. If you hurt too bad or you dont have alot of energy some days then do some little things with some 2 pounders, or when youre sitting squeeze that cute butt of yours and hold for 15 secs then release and do it again 3 or 4 times. And have a good MIND SET, people are always surprised the power of your own words to yourself. It can take you further than you think! Good Luck! And remember YOURE BEAUTIFUL!!!!!!

sick n tired
03-26-2009, 02:36 PM
Oh Hunny,

I wish there were something to be done to take this away...how are the seizures, today...I was wondering because you said you were really sick...I know when I get sicker and sicker I begin to have siezure play...

mountaindreamer
03-26-2009, 05:50 PM
hi amanda,

all of this must be very difficult to face right now. i wish we could take it all away for awhile. if bandanas or even scarfs folded like head bands feel good, you could really get creative and have fun with dressing your head. not making light of the situation....but like others have said, your family and friends will understand and support you in whatever decision you make....just do what is right for YOU