View Full Version : It's been a year and a half since my last post

September 7th, 2009, 09:40 AM
I was just thinking about this forum the other day and thought I'd come back and peek. In Spring of 2008 I was diagnosed with an autoimmune arthritis that has changed my life a lot. One side effect from the medications is hair loss. When I left the board my hair was to my tailbone and growing strong. with every wash and comb I'd lose handfuls. So in order to have some sort of control over something in my life I cut it short. I've been keeping it at should length for a while, and it's not really growing at all. I've trimmed it to tidy the ends, but not taking much length and in 18 months have not even gained an inch. I've just been throwing it up in a bun and ignoring it. Washing it twice a week, but washing makes my scalp feel funny now and seems to kill my hair, but it gets real greasy by the next morning. I joke with my husband that I'm just going to shave my head and get it over with. Some days I really feel like doing just that. I've been trying different things with no success. I'm tempted to just dye it a funky bright pink color and just have fun with the little I have.

So that's why I'm back here. Not knowing what to do. I've tried everything in my old arsenal of hair care and I guess I just need a should to cry on since there really is nothing else to do.

September 7th, 2009, 09:53 AM
Awww! That's horrid! I hope you feel better and get better. Luckily, hair can be fun and nice regardless of the length, so washing it as often as you need to and dying it fun colors is a great way to cheer you up when you're sick.

September 7th, 2009, 10:52 AM
Yes, have fun with it!

When you have years and years of growth hanging down your back, all you'll want to do it baby it, and rightly so. Right now is your chance to do all those fun things, so don't miss out!

Hoping your health is good.... :flower:

Blue Willow
September 7th, 2009, 11:13 AM
id go shocking pink or fuscia..that will look amazing..

September 7th, 2009, 11:16 AM
I feel so sorry for your body's state of health, you must be in so much pain! I hope you find the best treatment for your type of arthritis.

And I'm glad you have a husband who supports you. Take pleasure in all your loved ones and family!:grouphug:

September 7th, 2009, 11:33 AM
In my 20s I noticed I was having problems with my bones and didn't think it could be arthritis. Now in my 40s, I'm pretty sure mine is autoimmune (haven't been to the doctor about it), I changed my diet to almost eliminate red meat, spinach (that was my favorite superfood :( ), and I can't take my multivitamin everyday. I do take hair vitamins and joint supplements, and I feel real good when I follow that. I'm so sorry your experiencing this and I pray you're feeling better soon and your hair recovers :flower:

September 7th, 2009, 11:34 AM
Thanks guys! Maybe I'll get the courage to do this!

This darn disease is frustrating to say the least, I need something fun in my life! I go for my next infusion this week, maybe I'll pick up the hair dye this week too to "celebrate" how these infusions are killing my hair! If I can do it before I think the nurses would get a kick out of it! They already love my tattoos.

It's hard to deal with at my age. Just about everyone's comments are "but... you're so young." I know they mean well but it doesn't help me feel any better. I feel old and tired.

And about the awesome husband, yes if it weren't for him I don't think I'd be able to get through this. He even goes with me to the hospital for the infusions which take 5 hours from registering to when we leave. He gets so bored and antsy but he's great!! He really helps around the house too.

September 7th, 2009, 11:38 AM
So sorry to hear about the hair loss. :( I hope the medication is worth it. Maybe there is something else they can prescribe that doesn't cause hair loss.

September 7th, 2009, 11:38 AM
In my 20s I noticed I was having problems with my bones and didn't think it could be arthritis. Now in my 40s, I'm pretty sure mine is autoimmune (haven't been to the doctor about it), I changed my diet to almost eliminate red meat, spinach (that was my favorite superfood :( ), and I can't take my multivitamin everyday. I do take hair vitamins and joint supplements, and I feel real good when I follow that. I'm so sorry your experiencing this and I pray you're feeling better soon and your hair recovers :flower:

yeah I've tried just about everything. Elimination diets don't help me. I've tried all kinds of drugs, some work, most don't. But the ones that do help stop working after about 6 weeks. Now they want me to take MTX or cellcept (drugs for chemo and organ transplants) to see if it'll help the other medications work longer. I'm not sure I want to poison myself any more then I already am. The list of side effects from the drug is scary, everything from lymphoma to lukemia to lupus and MS to death. I have to be careful of infections.

I feel like a lab rat.

September 7th, 2009, 03:21 PM
Man, that is scarey stuff you're looking at! Sorry to hear about your troubles. Auto-immune is bad. Arthritis is bad. I can't quite imagine the combo. Yikes.

Your DH sounds like a keeper, aren't you fortunate to have him! :) Some folks run away at the first sign of any trouble.

Hope you are able to do the hair dye thing, that might be fun and amusing. Of course heaps of people will fuss at you, just like when we grow our hair long: you're too old for that! :) Bull. If it makes you smile, it's done it's work.

September 7th, 2009, 03:27 PM
I agree with the crazy hair colors too. If you end up having to cut your pretty locks, than just have fun! Go to a hip clip joint and get a funky short cut and do some bright silly colors. Have a good time if you do lose your hair to thinning. Sometimes in life we must go with the flow.

September 7th, 2009, 06:32 PM
I've been where you are; in some ways I still am. I cut my hair to shoulder three (? maybe four?) years ago now from medications. Interestingly enough, it is an autoimmune disease also (I have two; such fun! :rolleyes:). Mine didn't grow for a while either, but eventually it did start back. I was able to switch treatments and remove the worst offender amongst the medications (though by no means the only one) and decided to start growing my hair back in January.

Here's what I can say from my experience - do whatever the heck you want to it while it's short. I purchased thickening gel (it really worked too!) and blow dryed the heck out of my hair every single day. Do I have heat damage now? Of course. Do I regret doing that? Nope. Because it helped me, at that time, to cope. I felt better (psychologically) when I thought my hair looked better. That was more important to me at the time than worrying about the future damage to my hair. So go crazy! Then if you decide to grow it back out later, then you can worry about damage. You'll be in a much better place to do so then.

Good luck! :grouphug:

September 7th, 2009, 09:31 PM
Funny, because I'm also at about a year and a half since posting. I know it's frustrating, but please be gentle with yourself and your hair. Try to find some way of pampering it, maybe scalp massage or something. Healing sent your way!

September 8th, 2009, 08:31 AM
Welcome back! I'm sorry to hear that you're going through yucky stuff. :grouphug: Do what makes you happy, and enables you to enjoy the hair that you have. It's not about how long it gets, it's about enjoying your journey, right? :flower:

September 8th, 2009, 09:24 AM
Sorry to hear about your health problems. I have a friend who has rheumatoid arthritis and she needs to take methotrexate shots to help control it. I was talking to her recently and she said that she had some major hair loss before her condition was under control and again when she started to take the shots. Her hair is starting to fill back in now that everything is under control. Sending good thoughts your way. :grouphug:

Do what you need to do to lift your spirits - your body is more important than hair. And if it gives you the opportunity to go crazy and experiment with fun stuff - even better. :)

September 8th, 2009, 11:14 AM
Well I did it! I bought the color and the bleach, but chickened out with the bleach. I just put the color on my regular hair color. It's pink but not REALLY pink. I love it! I'm thinking next time I'll do it full on and then every couple weeks change out the colors.

I cut it shorter last night to just about shoulder length, just long enough to put up if needed. Really only taking about 1.5" off. I was very upset to see that my hair will not grow right now. But I told myself to just have fun with it.

Rohele, what I have is a cousin to RA but it affects the spine more and then also the other joints. For me right now it's my back, hips, shoulders, ankles and toes and wrists and hands/fingers. Even with the prednisone I'm swollen and stiff.

September 8th, 2009, 11:22 AM
Kristin, glad you put the pink in your hair. That was empowering, I would think. I would bleach it next time and go full speed ahead with the brightness of it and put the pink on the bleached hair. Go wild!

Post pics too! Post one now for sure!

And so sorry about the chronic problems you are having. I have arthritis too but mine is not as bad as what you have. I can sympathize though because every movement I do hurts something, but does not overly restrict me.

September 8th, 2009, 12:02 PM
I would love to see your new colour too! I definitely think pictures are order. :)

September 10th, 2009, 08:38 AM
I tried to get my husband to take a photo but it was too dark. I'll try to get one this weekend when it's sunnier.

I've had people tell me to do the bleach next time. I think I will if I don't chicken out again! For now I'm just having fun!

September 10th, 2009, 02:05 PM
Best wishes to you and I hope you enjoy your fun color! My MIL has RA & does celebrex shots and prednisone, she is a big encouragement to me, because I think how can I complain about anything in my life compared to the pain she is in all the time? I bet that you are an inspiration to those around you too!

September 10th, 2009, 02:39 PM
I'm so sorry to hear of your health problems. My boyfriend of 2.5 years has an inflammatory disease and has to take anywhere from 10-25 pills a day (the 25 was a really bad time for him). He has to take an immune suppressant and every so often he'll have to go on the prednisone (I call them 'puffer fish pills'. For some reason this makes him smile).

I'm glad that you're finding little ways to cope with your problem and I'm very glad that you have such a supportive husband. Hold onto him tight =D

September 10th, 2009, 03:49 PM
Aw... :grouphug:
Truthfully, I think I'd probably go with crazy colors of dye. Maybe wrap a colorful or contrasting scarf around the hairline and let the ends hang out. Maybe put some funky beads on the ends. That sort of thing. You might also get some clip-in pieces to augment your own hair or sew them to the scarves. Then you could wrap on a scarf with a different contrasting hair color depending on your mood.

September 22nd, 2009, 07:15 AM
Yeah I'm on prednisone too. It does make my whole body puffy!

Well here is the before picture. This was taken 2 years ago, about 6 months before I cut, so I think it got a bit longer than this.


Here is the first pink dye


and then I had a wedding this past weekend and dyed it a nice red (the bride's choice of colors!)


I like the red a lot! It seems to go with my complexion well and I've gotten a lot of comments. At home I still have blue, hot pink and purple. Once I tire of dealing the dye and how it's getting all over I'll dye it back to a dark brown. My natural color is a medium dark blonde that ranges from almost white to almost black in tones. It's pretty cool, but I want the dark brown while it's growing out again, if I can get it to grow out! My hair for some reason doesn't like any shampoos (and man have I tried MANY) unless it's dyed, then it loves shampoo for colored hair.

But any way, that's it! I'll post other colors as I do them. I think I'll bleach it for the hot pink just to shock everyone, but I'll do it around Halloween so it's not tooooo bad!

September 22nd, 2009, 11:45 AM
What a lovely colour! That red is really pretty.

I think you made a good choice of colour there, and I am looking forward to seeing the Halloween pink :)

September 22nd, 2009, 11:53 AM
Sorry to hear about your illness and lack of growth. Your health comes first and short hair is fun.

I used to have a strand of bleached hair and I would dye it pink, purple and blue with Manic Panic. It was fun.

September 22nd, 2009, 11:58 AM
I'm so sorry to hear of your illness. I'm praying for your quick recovery. :flower:

As to hair washing, have you tried conditioner only washing (CO)? This is much more gentle for your hair and scalp than shampoo, and it cleans very well if done right. I hope you find a good solution soon that can contribute to your feeling better about your hair. :)

September 22nd, 2009, 12:02 PM
Yeah I tried water only, conditioner only, and just about every single shampoo available to now avail. When it was a normal dyed color I washed it twice a week with shampoo for colored hair and haven't had any problems since.

This red is manic panic deadly nightshade. Looking back at the long shot I really miss that length! Although I keep thinking how cool it would look with this red being that long!!