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Comment by CurlyK on September 11, 2016 at 11:06am

Thank you dear friends. I wish I could meet and hug each one of you. It helps to know I'm not alone. I'm heading to meet my regular professional stylist who offered to meet me on a sunday to shape this mop in my head. I am feeling hopeful that she can fix it so it's not so overwhelming. The hair itself is quite beautiful but thick and I've never had thick hair. Ive also gotten used to not having a lot of hair to all of a sudden having a LOT. Hoping that with a proper shape and some time I will learn how to fix it each day. Will keep you posted.

Comment by Anne Louise on September 11, 2016 at 10:25am

CurlyK I am so sorry for your suffering. I always follow your posts because I too have curly hair. I always wonder what sort of a hairpiece I would find to match my curls. I am not at that stage just yet. However, now we have something else in common. My dad went on hospice in May for 12 days and died on June 1st. The stress was unreal. I cried over everything, and sometimes still do. I am sure the situation with your father is exacerbating everything you're going through with FFA. Hang in there and I will keep you in my thoughts and prayers.

Comment by Liz on September 11, 2016 at 4:31am

Sorry I wrote the lady post on my phone which autocorrects.

Comment by Liz on September 11, 2016 at 4:30am

Hi Curly K
I have a hair piece. I had it done last December. For the first few days I hashed the feel at night. Like you I was used to scarves. Gradually I for used to it. Now, nine months later (amd for some time) I really don't notice it. This is my new normal and that's exactly how it feels. Stick with it xx

Comment by CurlyK on September 11, 2016 at 1:43am

Wide awake in middle of the night in tears. I'm just not used to having this hair on my head. I'm missing the comfort of my scarves...I hate this disease.

Comment by BBQueen on September 10, 2016 at 5:44pm

CurlyK- It is so surreal and a nightmare I cant wake up from. I have a hair piece too but today I bought my first cheap (er) wig to sit around the house in to see how it feels. Im on three med's just trying to stop it. Maybe in many years to come we can all get transplants but for now its a dailey struggle for me. There was alot of women trying on wigs in the store today. Made me feel better knowing Im not alone in my hair struggles.

Comment by CurlyK on September 10, 2016 at 4:24pm

I now have my hair piece on. It feels so strange to have hair on my head again. It's definitely hotter having all this hair! It feels comfortable otherwise. It will take some getting used to but I believe this was the right solution for me. I just didn't want to go the route of alot of medicines and side effects etc. Having my self confidence back and feeling more attractive to my hubby will be a huge blessing. He has been wonderful through all of this - always assuring me that I'm beautiful - but I know how he always loved my curly hair. FFA is just still so surreal to me...

Comment by CurlyK on September 10, 2016 at 12:09pm

My semi-permanent hair piece came in this week and I am on my way to get it installed! my hands are shaking as I am very nervous about this. My dad is now under hospice care I am about to ask my boss for one day off a week so I can get a handle on my stress. This is all a lot to deal with at the same time. Thank you for your support and I will let you know how things turn out later on today.

Comment by Minter on September 6, 2016 at 6:35pm

Anne Louise, yes she did, actually I am overdue for an eye exam, so this is just the push I need to make an appointment-

 Thank you BU :-) too early to tell if any or all of this is working or if it is just pure chance, but I am glad that nothing has really changed for the worse in the past month!    I will tell you that I am glad to go down to 2 x's per week with the clobesterol, I hated/will still hate having to put it on my scalp every night :-(  

I also have been doing the following every morning for the past 3-ish weeks, I have been massaging tea tree oil onto my scalp, then I pour rose water in my hands and run it through my hair, and then splash it on my face and arms- then I put tea tree oil on my itchy forearms- I know the tea tree oil helps on my arms, not sure if the rest is helping my scalp/hair, but I don't care as  wow, does it smell fabulous!

Comment by Anne Louise on September 6, 2016 at 11:19am

Hi Minter, Did your derm recommend an eye exam before starting the Plaquenil? It is recommended at the start of treatment for a baseline and then periodically (6 mos or 1 year). Damage to the retina is a rare side effect that can be prevented with periodic monitoring. Glad to hear you haven't had any more hair loss!

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