Feeling guilty

[Mattsmom277]

I posted once or twice through the years about having trichotillomania ... it started when I was a young girl (probably 7-8) due to trauma in the home, and has been a problem off/on throughout my life ever since. For those that haven't heard of it, it is a anxiety/Obsessive Compulsive Disorder (OCD) type problem where you literally pull out your own hair. While some people pluck all over their bodies, I've only ever pulled from my scalp. At about age 9 I had actual bald spots, but in the years since when its been a problem, it's never gotten to that level. Until this past year and a half.

I no longer have a family doctor, so no access to treatment for my MS. My pain level is off the chart, fatigue has felt like I've lost a lot of my life the past year or two, my limitations are growing and it has really weighed me down emotionally. My hair is normally the thickest of anyone I've ever known. Literally without exaggerating I have the thickness of 4-5 women's hair combined. It has always been the one thing I felt was truly beautiful about me. I have worn it down to my waist, all one length and healthy, thick, vibrant, shiny.

I haven't had a hair cut in nearly 5 years now. My hair is just past my shoulders (without a cut!) and I've lost over 75% of it. I have such bald spots I can no longer hide it, and my pony tail is so thin it makes me cry. I literally can't go without putting my hair into a pony tail and putting on a baseball cap. Which also means no dressing up, which means always feeling bummy and unattractive. I have gone out of the house less and less and I'm finding myself in a real depression which saddens me given that my life is going well in so many areas. I should be feeling great, aside from MS symptoms.

Tonight we went out for dinner, and I could not wear a hat. Which meant going out with this mangly mess of hair and bald spots everywhere. I'd broken down earlier this morning and just wept and wept. S/O is such a champ. He just let me cr it out and told me all the right things, that he loves me, I'm still beautiful, we'll figure this out etc. Yet how does one "figure this out"? I mean, its awful and I just couldn't see light.

The solution? TOmorrow morning I have a appointment at a very exclusive salon. I've never gone to a pricey salon in my entire life, heck I get a hair cut about once every few years. And then I would go to a place that charges $12 for a cut and style. I'm feeling so guilty. We can't afford this, not even if it was a normal pricey hair cut at this place, let alone what my appointment is for. Especially being so close to Christmas. It is nearly the cost of one of S/O's entire paycheques that he gets as training funds while he's taking his course. OUCH!
I'm having extensions put in. My normal hair color, real human hair. The priciest way is done by fusing it to your natural hair, not weaved. The idea is to make it look like my hair normally looks when I haven't destroyed it. I about fell off the sofa when I heard the prices. $50 per hour for the hairdresser to put them on, takes on average about 3 hours, sometimes 4 with tricky hair (mine is definitely going to be a challenge) and between $300-$500 depending how much is needed to get the needed thickness/fullness (for me it will be a lot since I've done such a number on it and it needs a lot to fill it back out). So it will be a minimum of $500, up to maybe $700. For HAIR!!! I have cried off/on all day. When I went out tonight though with no way to hide my balding etc, I knew it has to be done. I simply can't do this anymore. But I can't believe I may fork out $700 to give back what I was blessed with naturally.

This isn't like convincing yourself to allow a treat for yourself like a simple hair cut, or a new blouse, or whatever we do from time to time to cheer us up. This is nearly the cost of a months rent for our home. Taking that kind of funds out of our families limited budget makes me feel sick to my stomach. At the same time, all I keep thinking is that this is my last night being ashamed even at home with my own family. Tomorrow will be the last day that I wake up and try to rig my hair up for minimal bald spots showing while fighting the tears and the shame. Then I start feeling guilty at the bit of happiness and relief that builds up as I picture coming home and looking at myself in the mirror and seeing my hair looking pretty and full and healthy again.

Does anyone have any ideas of what I could do to avoid the cost of extensions? I have zero other ideas but if anything else was possible to help me through this period I'd jump all over it. I so want to feel good again and yet that money is going to eat me up inside.

 

[Hound dog]

I have a friend with alopecia.......which means she can't get hair to grow, a genetic condition. She buys the most beautiful wigs. She saves up for them. One she has I call a Marilyn Monroe style and be darned she looks alot like her when she wears it. lol The girls is in her early 20's. That one cost her a lot but she saved up for it all school year. Many wigs you can take to a good salon and get styled any way you want them done too. Just thinking that would last longer since this is an ongoing problem until maybe you can get in to the docs.

Nothing to be ashamed of. Sort of like nail biting but on a larger scale. I've noticed.......and Katie has mention that Kayla is doing it, but all over her body.

Treat yourself, then save up for a wig. You deserve it. Honestly you really do.

Hugs

 

[hearts and roses]

Mattsmom, there are a variety of wigs available that are created to go over and blend in with natural hair. They are made with open spots so natural hair can be pulled through to make it appear much fuller and natural. Seek out a salon that has a stylist who works with hair conditions and sells wigs. I would suggest you go on line to a wig outlet store and just look - but it is difficult to buy your own wig and then know what to do with it without having an experienced stylist help you make it look natural - you don't want to get a super cheap one but you do not need to spend anything over $100-$150. If you wear it every day, which you likely would not, it may last about about 4-5 months with good care. This is a better alternative for you, in my opinion, if you're not actively treating the trich. Why spend $700 on hair extensions if the risk to pull those out still exists, Know what I mean??

I have trich also, since about age 14/15. If you want, you can PM me. I'd be more than happy to talk with you about it and all the pain, shame, and embarrassment it causes. I wear a hairpiece, have for about 16 years now, once I moved past being able to maintain a life wearing hats and bandanas. At first, it felt so awkward, but now it's just another part of my beauty routine and in fact, it's kind of nice not to have the worry of styling my hair all the time. Wind can be a problem at time, lol, but you know, you figure out ways to make it work. Big Hugs - I completely understand how you feel 100%.

 

[Mattsmom277]

Thank you both so much. I have talked about wigs and I'm not against them. I just am stubborn and i'm so hoping to find an option to help me get through while my hair grows back and while I try to get some more anxiety medications and get a hold on it again. Since this is hte first time in my life that I've pulled until its been noticable (and boy oh boy, is it noticable ) I'm hoping that the extensions help with the pulling actually. It is very strange but once the extensions are in, I can't see it giving me the same mental "pay off" pulling them as the sensation will be so different. I'm hopeful but also realistic and if I find it doesn't help, well that will be that. I just know that for me, at this point right now, if I have a wig or something else that isn't melded to my head, I'll simply take it off at times as anybody would, and find myself with less and less hair. I guess it's just something I've got to give a try for myself, to see if I can get back on track.
The responses here and in PM have all been so helpful and I want to thank all of you. Especially for sharing that it is happening to others, and no feelings of "Wow, what a wack job". I can't express how much that has helped me, especially this morning! I'm feeling a bit ill to my stomach already, 2 hours until the hairdresser appointment and showing a stranger what is really going on under that baseball cap of mine! I'm going to discuss wigs with her while I am there. When we spoke by phone yesterday I learned she is the extension person at this salon, as well as the person who takes care of wigs and hairpieces. She seems so knowledgeable and I think it's a good idea to ask while I'm sitting there for hours anyhow, about the costs, styles, maintenance etc. Because if I'm pulling WITH the extensions in? I'm going to have them taken right back out and go on to another avenue. I know I won't ever let myself walk around with my head a mess like this again. The emotional pain is so overwhelming I simply can't picture doing it again. My aunt had chemotherapy and lost all of her hair and had the most realistic and beautiful wig. I know she used the same place I'm heading to today, so at least I'll be in the right persons hands and she'll know about my issues if/when I need a hairdresser again, or a wig made etc.
I am going to try to just concentrate on someone's message in a PM this morning, that it isn't spending money for vanity but for health. And it really hit home that she was completely right. This is no longer about vanity, that ended about a year ago when my hair looked a mess. Now it is definitely affecting my health, emotional at minimal but I'm sure even beyond.
Wish me well ladies, I'm crossing my fingers that this can help me a bit, and my wonderful cousin is going to come with me to a walk in clinic to get a new script for anxiety medications as well. They have done a lot to help me in the past and it is obvious that I need some help, it is overdue in fact.
Putting on my brave face this morning, and hoping I don't get sick walking into the salon.

 

[Mattsmom277]

Okay, so the nerves are kicking in and I've just had to go brush my hair now that it is dry from the shower, and here I go crying again. So in a bid to make myself feel that there is life after trich, I did a search on facebook and found some interesting groups and links. I don't want to join the groups, as it will show to family/friends on my FB profile, but the reading is going to be helpful I think. I read a couple of articles linked on one page and was astounded at some things.
I also had a message waiting on FB. A friend of mine is currently on city council and is running again (election is this coming Monday). She is a person very "in the know" and is the first person outside of my cousin, brother, S/O and my aunt who know I have trich. I finally spoke with her about it this week when I had run into her and she commented on why I would cut my gorgeous hair and thinned it out so much (had a thin ponytail sticking out of a hat so she didn't see the bald patches). Anyhow, I decided to confide in her as I wanted to pick her brain about places in town that would offer a free private meeting place for non profit groups. I have been pondering starting a support group. I facilitated a rather large weekly women's support group when I was living in Toronto and found I was very good at it. I've been humming over starting a group here for women with various causes of hair loss (alopecia, trich, hormonal causes, cancer etc etc). She messaged with a place that I could have for no cost. So I'm going to ask the hairdresser today to please mention it to any women she sees that are dealing with hair loss, and to let them know that in about a week or two, after I've set up the details, I'll contact her with the information to pass along to anyone interested. I will also print some fliers and drop them at some psychiatrists, psychologists (luckily most are in a central building), the cancer society, the hospitals, hair salons (especially those that do wigs and extensions) and post on community bulletin boards as well as at the free local newspapers online that are frequented by people where I live.
I think it will help me a lot to have others to talk to, to brainstorm with, to hear what helps others, etc. Maybe if I get pro active I can get this under control and find better tools. My old tools worked for a long time but obviously are not cutting it. I'm so fortunate as well to have as a contact my former psychiatrist. She and I stopped having a professional relationship and became not what I'd call friends, but moved on to a first name basis and stopped having sessions. We attended a church tea/luncheon together and I think it was on my part (a bit weirded out about being friends with someone who knew so much about me) that it just stayed at that level. Anyhow, the upside is I'm completely comfortable calling her up and asking her if down the line she would come and speak with a group should enough women show interest. I am confident she not only will say sure but will actually enjoy helping out.
Can you all tell I'm trying to focus on any thoughts right now that are NOT to do with going into that chair shortly for minute examination of my picked over scalp? Thank you thank you thank you all for being such a fantastic group. I can't bring myself to tell people about this problem, yet here? I have had zero problem sharing with all of you because you are all so fantastic and non judgemental. It is worth its weight in gold.

T-minus 64 minutes and counting! I'm off to have S/O take pictures of my hair for the doctor to see what it is like now, before my extensions. Yikes!

 

[ML]

I have female pattern baldness and have worn the type of hair pieces H&R speaks about. I haven't in the past couple years though. Now I have my hair cut really short. But I highly recomend them! That way you will always have that option when your hair gets bad.

I started getting thin (hair) in my 30s and it just got progressively worse. I also had my menopuase at about 40 so I believe there is a connection but even the HRT hasn't brought it back. What a difficult period of time that was as I adjusted to losing what felt like my beauty essence and youth at the same time. Now that I'm almost 50 I guess I've adjusted to the new me and it doesn't bother me so much.

I am sorry you're having to deal with this. Please go easy on yourself and remember that true beauty isn't about the hair. We love you girl!

 

[KTMom91]

How does your hair look? I'm excited for you and your new look. I understand your reluctance to spend the money, but feeling good about yourself makes all the difference. My favorite pampering thing is pedicures...silly, I know, because Hubby's on unemployment, and I work part time...but it feels so good!

 

[hearts and roses]

In case you're interested...http://www.trich.org/

Through this website you will find a wealth of information on why, support, starting groups, wigs, techniques used that help, everything you can imagine. I went to a conference in Difficult Child several years ago and found it extremely comforting to meet so many others in the same boat and the classes I took while there were very informative. Through this org I was able to start a support group locally and meet other locals who were going through the same or similar things as I. We were able to share ideas and techniques that worked or didn't work for us. It was primarily women, but there was one guy who joined us a couple of times. I made a lifelong friend through a day seminar I went to in Boston...it's been an amazing support and very informative - for anyone who is interested in learning more~

 

[1905]

I completely understand where you are coming from! I had cancer 10 years ago and wore a wig at times, but hated it. The worst part of it was, and I'm not vain, I didn't care about losing my breasts, but- my hair- that was the worst! I have hideous hair, so thin, you can see my scalp all over. I am very disturbed about this every day. I have the best hair proucts, nothing works. I hate feeling so bad about my hair- just so you know you're not alone. You do what's the best thing for you, everyone is different. Do not worry about the cost of those extensions, it's going to be so worth it if it makes you feel good and helps your condition. Do it, hold your head high, know that you're beautiful!!!!

 

[Jena]

i'm late but wanted to jump in and say i hope you love it i'm sure you will!

i'm sorry it's been hard on you as of late. MS can also cause bouts of depression too. are there any support groups around you can go to for that and maybe it would help overall??

dont ever be ashamed of you in anyway.

 

[Mattsmom277]

Thank your for the link, I've read that site before but its been many years, time to revist!

RE: support groups, there is nothing here but I'm going to try to start one myself now that I have a place I can hold some meetings. I have experience facilitating a group so that part will be good.

My hair? AWESOME!!!!!!!!!!!!!!!!!!! it is to my waist, my natural color perfectly matches their shade of black. She took 5 hours and it ran more than I anticipated. Was it worth it? Every penny an dmore if it had taken more. Will post more tomorrow cuz company just came in. Just wanted to share my joy. It looks like my normal hair!! It's wonderful.

 

[GoingNorth]

MM, I don't have trich, but a few months ago, I took the money from my very small savings account and had my bottom teeth restored. (I wear an upper plate, so can sympathize with Hound Dog on that). It cost me an infant fortune and a lot of time in the dentists' chair, but now I can smile again. This went well beyond filling cavities. I have crowns on some back teeth and the rest are resin restorations.

I felt gulty about spending the money on myself, but it really made a huge difference in how I feel about myself.

 

[barneysmom]

Mattsmom, you sound gorgeous with your waist-length hair. Worth every penny in my humble opinion.

Take care of your anxiety though -- it won't disappear. I hope you got your script. Take care of your beautiful self and your beautiful hair.

Jo

 

[Mattsmom277]

I had to do a appointment, so have a 6pm appointment with the walk in doctor on Monday (they aren't open here sundays). I took pictures of before so he could see how bad it is when i go for medications.

I feel beautiful simply because i feel myself again. I spent 7 years growing my hair to my waist only to absolutely destroy it in a year or less. I just feel like i was given a do-over, so I'm going to work really hard to get new strategies in place to not pull. I can say though that with the way it is attached, I don't get any pay off sensation by pulling. I did have some put up front where normally they would not have put any at all, simply to ensure all of my head had extensions, no bare short hairs to get to and pull. It means i have to style it certain ways to ensure nobody can see them added in front, but it means i have no access to my normal hair strands. I was correct that the extensions dont give the right 'feel' which weird as it is, is a good thing because I only pull hairs that feel a certain sensation when I tug on them, kind of a picky plucker or something. Knocking on wood that it keeps that way.

But whatever tomorrow holds, today was a blessing to walk with my head held high again and to feel a bit pretty and feminine. My S/O has a heck of a IOU pile to cash in on lol

Edited to add: I neglected to mention a sweet moment. I came out and instead of being at home waiting for me , my S/O was pacing outside the salon. He was worried they couldn't cover it up and i;d be upset and wanted to be there without embarassing me. So he waited outside instead of comfortably inside. His smile (and that manly gleam in his eye lol) when he saw me come out so happy and with hair again? Worth the price of the appointment even if I pulled them all out tomorrow. Nothing feels as wonderful as someone giving you a gift, knowing it cost them so much, and knowing they would do it for you again. Im a lucky woman

 

[ML]

And beautiful no matter what. One of my favorite lines in a song is the one "if your hair fell out I'd love you anway" by Randy Travis, "Forever and Ever Amen". I'm glad you have the hair but know that it's just the icing on a fantastic cakel

 

[Mattsmom277]

Thank you

I'm extra glad to have something to smile about as I havent mentioned much lately about my MS but I'm pretty certain its time for a new mri and past time for me to get serious about getting on some injectable/prevention type medications. I am having some fatigue issues worsening the past week or two, virtigo is bad enough that since yesterday I nearly fell several times and as of today can't look toward my feet or bend down or I'll fall for sure. Its bad enough that I am nauseated and my eyes are a problem too so a good chance something is going on with my optic nerve. Seems a good chance I'm getting new lesions at a certain part of my spine and in a acute flair. Yuckers!!! Good thing I am going to the clinic tomorrow about my trich, i'll get a referral to the neuro again I guess. I should feel lucky a bad flare has been a long time I guess.

I was going to get s/o to take some pics but I'm feeling so worn out I'm simply going to climb into bed I think, maybe tomorrow. I'm anxious to show you ladies my new do!