I just need a good venting

General
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Hi Everyone,

I know I haven't been much of a participant these last few months. I have been reading your threads though and I swear like 90% of them I can relate to. Lately I haven't felt like talking about my lupus. I'm just so tired of feeling sick and tired. My depression is in check and I still see my therapist.

Back in January I asked you all about the pain with my scalp and I got a lot of great responses, for which I am greatful. Well, the pain is gone but now I am losing my hair! :*( I know it sounds vain but I have always had really thick, shiny hair and now it's coming out fast. And I can't stand it! How many more things does this stupid disease get to take away from me? I mean I can't work, and because my disability hasn't gone through I can't help to provide for my family, I can't do a ton of the stuff I used to like remodeling, and cross stitiching as any repetitive motion is trouble for me. I can't even cry because when I do, because of the Sjogren's, my eyes swell up for hours.

I thought I was doing ok dealing with this whole thing but I think the hair loss was the last straw. Do you know what I mean? It is so unfair! Just one big old pity party for me! Lol!

Thank you for letting me vent. I wish I could say that I feel better after doing it but I am still bummed. I will try to participate more as it is so nice to have friends that know where you are coming from and I could definitely use them. I lost a lot of them when I got sick.

Thanks again,

wendy xxx

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I feel for you re the hair loss. I seemed to lose about 2/3's of my hair & had a tough time emotionally. I knew it wasn't the biggest deal in town; - but it hit me hard. No one acknowledged it either just comments like - "Really, are you sure? You can't tell." " Oh well you can get good wigs now"

I know they were trying to be positive but it really didn't help. HOWEVER at Imuran 150mg Prednisone under 20 (& tapering) Ice pac's on head each night I now have 2 inch re growth here there & everywhere.

So fingers xx similar will happen for you. Best wishes Kaz xo

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Wendy, your concern over losing your hair isn’t vain. Our hair is a part of us that’s hard to let go. This disease requires so many mental and physical adjustments on our part. It’s no wonder we feel frustrated at times and lost. Living with this disease definitely requires strength and when we feel this strength decreasing we need to increase it again by finding the support we need to fight this. For me prayer and this support group does it. It’s ok to have a pity party now and then. It’s not good to keep everything bottled up. Besides, we know what you’re going through. We’re walking the same path. You’re not alone in this fight. Take care.

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Hang tough. The symptoms will come and go. When I am in a flare I notice increased hair loss. Then it will decrease until another flare. Pray and stay strong. I always tell myself " I will stay one step ahead of you (lupus)!" Sometimes I am successful; sometimes not.

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WENDY..... reaching out with a caring hand... and tearful eyes.

I just cried my eyes out the other day.

and this was what i said almost verbatum.

I am tired of NOT being WHO i reallllllly am. who i love to be.

I love looking pretty and doing my hair... nails.. etc

I barely work now... and its only enough to cover medical for my family- and childcare since i am usually out on fmla because of lupus.

I definitely should have filed fordisaility by now also...just trying to hold out...

why? i dont know yet.

but for women... our hair is apart of our individual IDENTITY.

so Lupus taking away MORE of who u are is just unbearable/

Yes u have a right to be pissed and miserable/

and no others just cant understand...but here ...on this site... we understand.

i know what u mean with losing friends.

its not tha you dont love each other and have fun together....

its just a realtionship that u no longr are able to nurture becuz u barely have time to care fo rself/

u have nothig left to give them after you give to ur family.

i totally understand.

My friends have been so supportive...and understanding.

thaey have stopped inviting me out but i am glad becuase i am tired of saying NO sorry. i dont feel well to be out right now...dont want to be the party pooper/

So glad u got on here to vent.

Please CONSIDER joining the WOMENS group on here.

You should see my vent sessong last night.

I was mean and grumpy// and MEAN....and I felt bad ... and was just a hot **s mess.

there are no better words to explain.

Happy thoughts today.

-Cynthia

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Hi Wendy!
The hair loss was the last straw for me too in my realization that I have something serious and need to lower my expectations of a full recovery. I thought, “I am never a quitter, I can conquer this on my own” NOT! LOL! I re-evaluated and started to refocus my life. Looked at the little things I could do and how much of a better, more appreciative person I have become. I am more living and I don’t take ANYTHING for granted anymore. I began to celebrate the little accomplishments I did make. Like when the house needed to be cleaned and I maybe got one bathroom sink and toilet cleaned, that was a major accomplishment. I used to do the entire house in four to five hours. Not even an option anymore.

I lost most of my friends too. It’s so sad. I thought they were true friends but I guess they are only there when you can go do things with them. Oh well. I started to pray more and build stronger relationships with my family and to make new Lupus friends as they are the only ones that get it.

For your hair, my rheumy prescribed 5mg of Biotin to take per day. It is actually over the counter and it does work. It takes awhile but really helps. My hair falls out after I get the burning sore scalp too. I think it’s inflammation of the hair follicles or something.

Anyway, ask your rheumy if you can take Biotin and keep in touch with us. We will be your best support system and with time it really helps.

Hope you feel better really soon!

Hugs- Tina

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Hey lablover,my hair was so long when my hair started falling out.I went to my hair stylist and he cut my pony tail off,“boy did I cry”.Now I rock a very short pixie,I can also spike it if I want to get a
Little crazy,I was pretty vain about my long blonde hair,Im still not happy about it,but it is what it is…the weight of your hair if it is long will make it fall out faster,I also use the Bosley hair treatment,I found it works better for me than any other shampoo,Also try not to wash your hair with shampoo with sulfates,almost all shampoo has sulfates,So look for sulfate free.If you can’t find it in the store go to a beauty supply house…It seems most people with lupus have issues with sulfates,Also I don’t get sores in my hair as much as I use too…I use to use random shampoos,whatever was on sale…I don’t do that anymore,Good luck and let me know how your doing…celeste

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Hi everyone! Thank you so much for your kind words. I feel better today. :) I don't know where that comes from. It's just every once in a while I can't take it. My husband is an awesome man who is my biggest supporter. He has had to take on a bigger load of everything. And he does it without complaint. My daughter who is graduating from college in a few weeks is also wonderful. But I try hard not to burden her. I am just glad that she was in high school when all of this started. Because I don't know how moms with little ones do it!

I will be more of a support to you all as it really made me feel better. And it is nice to know that others that care are out there.

Take care,

Wendy xxx

PS I saw a tatoo on a woman that said "Through pain comes strength" I wish I had the guts to do it. I just can't see me adding more pain to what I have. Lol!

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Lablover,

losing our hair is common...and let's face it, as women we want to look our best. I use Nioxin am/pm plus I only wash my hair 2x's week instead of everyday. It's helping. When it starts to look thin, I use Mane&Tail shampoo & conditioner (which was suggested to me here) and it's hardly noticable.

The swollen eyes are a pain in the butt. I found a great sleep mask that has small pockets to place cooled gel packs in. Putting this on for 1/2 hour does wonders.

The good news is it's not a constant condition.

It's amazing how resourceful we can be and sharing these tips can help all of us.

I didn't know about the ice, but that's a tip I will definitely try.

And, Wendy feel free to vent anytime.

DeAnne

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Wendy,

It’s a great motto to live by. Also so you know, lupus sufferers are not supposed to get a tattoo. You can get in a bad flare and bad infections from it. I just learned this recently so I had to share. Just like we are not supposed to eat alfalfa sprouts…go figure! LOL!

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PLEASE YOU ARE NOT THE ONLY PERSON LOSING HAIR FROM LUPUS. I USE TO WORK FOR PAUL MITCHELL. WHEN IT STARTED TO THIN OUT "HE SAID I THINK YOU HAVE A GLAND PROBELMS. AFTER 6 MONTHS OF HIM TELLING ME, I WAS DX WITH SYSTEMIC LUPUS. IT WILL COME BACK A LITTLE AT THIS POINT GET A SHAMPOO CALLED NIXON #4 BY THE LITER. GET IT FROM SOMEONE WHO BUYS SUPPLIES AT WHOLESALE. IT IS THE CHEAPEST WAY TO GE A HAIRDRESSER TO PURCHASE FOR YOU. IN THE SALON IT HAS A 300% MARK UP IN PROFIT FOR THE SALON. TAKE SOME BIOTIN VITIAMINS THAT SHOULD SLOW IT DOWN SOME. COSTCO HAS THE CHEAPSEST BOTTLE.

WRITE ME AND KEE IN CONTACTL MANY BLESSINGS ALWAYS MICHELE AND SERVICE DOG RUSH

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Folic acid will help. I go through phases where my hair loss is normal then I wake up sometimes and it’s falling out almost in handfuls. I also invested in a few cute hats and several scarves. There are great online tutorials to show you how to tie them. I also have a wig given to me by a friend who was recently told her cancer was in remission. Don’t get discouraged, there are so many great wigs and hair pieces that are available to us now. Be adventurous! Try to have some fun with it. Good luck!

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I love your Response AMY..... "be adventurous~!
this is exactly what lupus makes you do. Try many new things.. stepping outside of comfort zone.

YUP!



Amy said:

Folic acid will help. I go through phases where my hair loss is normal then I wake up sometimes and it's falling out almost in handfuls. I also invested in a few cute hats and several scarves. There are great online tutorials to show you how to tie them. I also have a wig given to me by a friend who was recently told her cancer was in remission. Don't get discouraged, there are so many great wigs and hair pieces that are available to us now. Be adventurous! Try to have some fun with it. Good luck!
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i just want one! just one... small one.

But i know ur right.. If i hurt from my kids putting all their weight on me... i am sure a needle -- ramming thru my skin for an hour would hurt me too.

sucks. ther soo cute---> at times.

tinapet said:

Wendy,

It's a great motto to live by. Also so you know, lupus sufferers are not supposed to get a tattoo. You can get in a bad flare and bad infections from it. I just learned this recently so I had to share. Just like we are not supposed to eat alfalfa sprouts.....go figure! LOL!
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Wendy, I feel for you with the hair loss. Mine started going thin 10 years ago. I use a product from Fantastic Sams called Revita. I noticed results within two weeks. They also have a leave-in product that works with it, but you have to use the shampoo for a month before using the leave-in. The shampoo reconditions your scalp. It is pricey, $30 a bottle, but I made mine last almost 3 months. I also try things like loose french braids and don't wash everyday. I've always loved hats and now use them all the time. Try something new, I choose to be a fashion statement, hee hee, with my hats. Let me know if I can help.

Be blessed,

Shelly

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Much thanks again everyone! I think I figured out how to upload the photo of that cool tattoo. If it doesn't show up, then I goofed. lol

take care,

wendy xxx

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We have Sally's beauty supply stores here. You may have some stores like this, that sell wholesale to the public. This is a great way to save money as Michelle said.

XOXO,

DeAnne

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that is a pretty tattoo.

and yes i love sallies.

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Hi Wendy,

I am new to this site, but not new to Lupus. I have been suffering with this disease most of my life and was finally diagnosed with it 4 years ago. It isn't vain to be upset about losing your hair. I feel your pain. Taking everything from us, making life totally transformed! Loss is loss... I have shed tears over losing my hair, while standing in the shower so no one would see me. I don't want to upset my family more than I have to. My daughter has, what she thinks is offering support, threatened to shave her head if I was to lose anymore. I begged her not to, my husband teased saying we would be twins! ... Not things I wanted to hear, but they tried and I appreciate that. I do appreciate you sharing with us! I am sad you know what it feels like to go through this process, from the struggle of diagnosis to the devastating realities of the disease and side effects of the medications we must take to control what we can, until there is a cure.

I have searched so long for a site like this, I hope you can find comfort in the friendships and may the pains soon ease for you. Emotionally and physically. I look forward to making many new friends here!

Gentle Hugs,

Nathalie

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aww hang in there I havent lost my hair but my kidney function at 30 percent because of lupus I still work how Im not sure just by the grace of god do know that .. I myself try to stay busy and all so I dont have to think about it and its ok to vent it helps and all I know so hang in there...