Never giving up

We are often so hard on ourselves and our "inability" to just kick this horrible disease but sometimes we forget to give ourselves credit for all the times we do damage and then pick back up and keep fighting. It's actually pretty admirable if you think about it. I've been fighting this disease for almost 22 years and I'm sure many of you have been fighting it for a long time as well. We may have our ups and downs but we have never stopped trying. We've never given up. We make adjustments and we pick up the pieces and we continue to try. I think thats pretty amazing.

I'm going to go a little off topic today but I promise it does tie in with trich.

As I've mentioned before, my father is a 9/11 'survivor'. I'm not going to go into the entire story of what happened but suffice it to say that he suffered severe burns over a fairly large part of his body and when I first saw him in the hospital, before he was bandaged, he was unrecognizable (and even then it was weeks before we really saw "him" again). While his face looks fantastic his arms and hands are still in pretty awful shape, despite countless surgeries over the years (as recently as this past February).

The last 9 years have not been easy on my family. My father isnt the same person but we never forget how lucky we are to have him with us. While I'm ashamed to admit this, my mother, sister and I have grown a little tired of his obsession with 9/11. It's hard to understand but he always wants to tell his "story" to strangers, he makes homemade stickers for his car "9/11 burn survivor", he goes on message boards and expresses his anger at anyone that disagrees with his view at 9/11 (and this can be pretty intense), he's angry that people automatically assume he was a firefighter, he's angry that people dont pay attention to the injured and focus more on the people who did not survive, as well as the police and firefighters, he has a lot of anger and not all of it is rationale. 9/11 has now defined his life.

I guess part of our frustration stems from the fact that we wish he would move forward more, let go of some of his anger, that he would recognize that he has this amazing second chance at life and that despite the physical pain, that he would make progress (he has been in therapy but we are convinced his therapist is useless). It may not sound like we are being fair but we have also spent the last 9 years trying to move forward with our own lives. We spent weeks in the hospital, our lives have also been changed and we dont want 9/11 to define our lives too. We will never forget, but we want to move on.

The reason I'm bringing this up now is because yesterday I had an "ah-ha" conversation with my mother. She has been battling with her car dealership after constant issues with her car, and yesterday went to a different dealership where she and my father met another 9/11 survivor. This man had asked my dad about his injuries and they realized that they clearly had something in common. Well, this car salesman used to work for Cantor Fitzgerald and as you may recall, they suffered so many losses as their office was above the impact site. He survived (i'm unclear if he was below the point of impact or how it happened) but he has never been the same. He told my parents that he has never been able to go back into NYC. Not even for dinner. He gave up his pretty decent paying job and now works more hours for a lot less pay just because he he just couldnt have the same life anymore.

It's so easy to pass judgment, to think that it has been 9 years and people should move on. But everyone does things in their own way. The ah-ha realization was essentially that we dont give my father enough credit. He goes into the city. He hasnt stopped flying. While he is nervous to be around crowds and tall buildings, he does it. He has never given up. Each day he fights for his own definition of normalcy despite the setbacks. He has a surgery and has to start physical therapy all over again but he does it.

My mother and I also realized that he has only spoken about what he saw that day once-he talks about what happened to him quite often, but only one time did he describe the people that he saw jumping and the chaos at the site. It took me a long time to get over what I saw at the hospital that day, it's hard to imagine what it must have been like to actually be there.

So I bring this all up to remind myself about the value of perspective. Sometimes it's not about whether we beat trich, or if we are having a tough day or week, it's about how many times we are willing to get up. People can judge us if they want, they can think it should be easier for us to beat, to just stop pulling, but until they really walk in our shoes, and understand what we go through daily while struggling with this disease, we shouldnt care what they think. If they are going to make any judgment on us at all, it should be about how amazing it is that we keep trying and refuse to give up. We should be proud of ourselves. This doesnt mean the next time I may slip I'm going to feel good about myself, but I will pull it together and keep trying and that is something I will feel good about.

Things are looking up

Last week I put my "monthly plan" into action and it's been fairly successful. I think having a monthly goal just seems less intimidating then "i'll never do ______ again". So much of managing trich and changing habits is the mental aspect.

I'm not going to lie, I am tired and cranky this week. It's one of those days where I really probably shouldn't be allowed to be in the same room as other people. It's probably a combination of no-smoking, being tired, the crappy/rainy weather, and just general life stress.

This is my official update: I havent smoked since last week, haven't pulled any hair since Saturday night (literally nothing which is great), I've exercised every single day, even when I've been exhausted, and I'm sleeping a lot better. All in all, not a bad week although it has been a very, very hard week of adjustments.

So now that it's been a week, I'm going for 2 weeks. There are plenty of stressors in my life right now, the boy situation (which has improved with "awkward guy" but there is still the issue of dating 2 people- a decision must be made soon), figuring out whether I should cut business ties with my friend who I was going to start the firm with, money issues as always, blah blah blah. It never ends. I wish I was one of those people that could accept that life will never be fully "stress free" but I'm just not. So I'm trying to figure out how to manage my trich and everything else in the face of stress.

I was on the Trich yahoo support group and emailing with another girl when I thought about my issues with control and symmetry (and I still havent changed my "display name" to my actual name which is kind of sad). Just the other day, on Saturday, when I was having a bad pulling spell I realized that despite knowing I needed to stop, I had to keep pulling to make sure that both eyebrows were "even". It didnt matter that it meant more pulling and less hair one one side but everything had to be kind of the same. It was unacceptable in my mind to leave stray hairs out of place if they didnt look "symmetrical" and each eyebrow was in the right shape. I dont know if that makes sense but hopefully you understand what I mean.

Anyway, a lot of trich for me seems to be about control and release. I need to be able to control what I pull and as screwed up as it is, the hairs need to be pulled in a certain way. If I leave a hair 'out of place' I know that I wont be able to stop. The anxiety of thinking and obsessing over that hair will literally cause my entire body to tense up and I wont be able to think of anything else.

Well I guess this turned out to be a little bit of a random post (but arent they all kind of?) so thanks for reading and if you have any tips on how to stop or control the urges, please let me know, I need as many new ideas as possible. Thanks!

A long 4 days

I'm four days into my first monthly challenge and I'm having fairly good results although it has not been easy.

I have not smoked anything since Wednesday night. If I'm being honest, which I try to be on here, I will admit that I do like to smoke pot but with that I always smoke cigarettes, obviously neither of which are good for me. So I gave up both (cigarettes are obviously harder even though I dont smoke that much) and have been good for 4 days. Last night was definitely the hardest. After a fairly bad date on Friday night (date itself went well, the "after-date hangout" was incredibly awkward) I decided to stay in last night and work on my new firms website which I've been putting off for a while. Normally I might smoke a little pot to relax and get to work but obviously that is no longer an option.

Instead, after 3 days of no pulling, my anxiety got the better of me a little bit and I pulled from my right eyebrow which is now about half the size it should be. Ugh. Thankfully I didnt pull from anywhere else but that still sucked.

I have been exercising and this morning completed day 2 of the P90X workout (i waited until yesterday to start although I did work out all week). I have to say, if you are looking for a ridiculous work out, I HIGHLY suggest the P90x. It is seriously insane, I cant remember the last time I sweat that much. That also helps me stay on the no-smoking kick.

So, the last 4 days have been fairly successful with the only exception really being my horrible pulling last night. But at least I didnt let it go too far and 3 days is still better than 1. Now I'm going to make it at least 5 days, I know i can do it.

Small changes, big difference? Goals for the next month.

Maybe I'm trying to be overly ambitious but I figured now was as good of a time as any to just try to make some small changes but when added together will hopefully make a big difference. In one month and one day I turn 30. I'm not too worried about it (although I wish people would stop asking me if i ever want to get married and/or have children- I don't know yet!!) but there are certainly things I would love to be doing better or differently.

Anyway, between the troubles I've had with trich this month and the reading I've been doing lately (including the Happiness Project- http://www.happiness-project.com/) I've decided there are several things I'd like to tackle and maybe trying to achieve several goals each month will help my make some progress as I will be influenced by the positive results. Then, the following month, I will add more goals and hope to just build on the progress I've already made.

Month 1 for me will have several pretty important goals.

1. Get more sleep --> this isn't as simple as it sounds. The information I've read lately has indicated not just that you aim for a solid 7 hours of straight sleep but talks about eliminating all light from your bedroom. I've noticed that when I shut off the TV, cover up all the cable box lights and alarm clock light, I really get a much better nights sleep.

2. Quit smoking--> Ahh, the time has come. Obviously I dont need to go into the reasons I should quit but this is the first time I've really WANTED to quit so badly (and the reasons are endless). So, last night I smoked my last cigarette and now it's up to me to remember all the reasons I want and need to quit. Right now I'm setting the goal at 1 week- I just want to make it one week (kind of like trich).

3. Exercise more--> since I'm not smoking and hopefully gaining energy by sleeping better, I have picked up a new workout routine. I find that when I exercise more often I am less likely to pull. Today my friend gave me his copy of P90X and this weekend I will be starting the program. Everyone I know that has even made it halfway through the DVD's swears by the program. http://www.p90xdvdshop.us/main.html . I'm hoping that seeing fairly quick results, and needing the non-smokers lung to keep it up, will help me stay motivated.

4. Stick to my nighttime facial regiment--> This also will tie into my fifth goal but a while ago I posted about how thoroughly washing my face in kind of a long, drawn out routine, was helping my trich since I didnt want to touch my face as much when my skin was clean. My skin was also looking fantastic. But, as usual, I kind of got lazy and stopped doing it as much. Enough laziness. Let's face it, I'm not getting younger and a strict routine can have nothing but positive results.

5. Stop pulling for one month--> I've done it before, I can do it again. This is my fifth and final goal for the month. I realize these are all fairly sizable goals but I'm really hoping that they have the effect of helping each other out. I often tend to pull when I'm smoking or not exercising so it is kind of related.

I thought having the initial months end goal as my 30th bday would also be a bit of a motivator since all these changes would have a big impact on my overall health, appearance and general happiness. It's certainly worth a shot.....

Here we go again..... and again.... and again

This may be the 5000th time I've said "ok, here we go again" but I guess that may be the only way to fight this disease. Each time we fall we have to have the strength to keep getting back up and not just give up. It's hard and frustrating and exhausting but I would imagine any "addiction" type situation would be. So, here I go again.

I've been doing a little better the last week which isnt to say that I've been perfect. I could certainly do better. My left eyelashes now look a LOT better than my right (funny how it goes from one to the other) and they are almost entirely back, or at least back enough that with a little mascara no one would notice. My eyebrows are still too thin and my right eyelashes are spotty at best, although I've still yet to touch the bottom lashes.

Sometimes the external motivator really helps and at the moment I've been casually seeing two guys, both of whom I really like. Now that I've had the experience, just a few months ago, of having almost all my lashes back to the point where I didnt think about it, I want THAT feeling back. The energy it takes to "conceal" trich is exhausting and I'm sure I have a hundred places where that energy would be better spent. So, today is day 1 again. I havent pulled in 24 hours. Here's hoping for another 24.

Soldier homecoming surprise mix

Random post, fantastic video

I try to limit the amount of non-trich related info I post on here but I couldnt resist this video (see below). If you havent already seen it, it's well worth the 10 minutes it takes to watch- a touching reminder of keeping everything in perspective and that we should never forget to be thankful to our soldiers and their families for all the sacrifices they make.

My second post today, and the brutal honest truth

When I first started this blog I said that maybe, JUST MAYBE, I would have the nerve to actually post photos. Well, clearly that has not happened but I'm really struggling again and today, while taking photos of my finger, I figured I should take a chance, a big chance. I know that the odds are I dont know anyone that may be reading this blog or who may one day read this. And if they do, it's likely they share the same "secret" about trich that I do and would never say anything. Realistically, no one will have a clue who I am from these photos which dont even show my whole face but it's still terrifying.

So, here are the photos, the honest truth of how I've been struggling with trich lately after I had finally grown back my eyebrows and eyelashes. Clearly you can see I still have make up on from this morning but I knew that if I went into the bathroom and removed the make up, by the time I came back I would have lost my nerve.

Believe it or not, this small insight into who I am is a HUGE step for me but I know its time to be a little more accountable and this blog has been very helpful to my own personal battle and it's time I took full advantage of it. I'm hoping that my showing these photos (which also make visible the forehead wrinkles I spoke of a while back- thank you trich for premature wrinkles) I will never be able to make excuses, like "no one will ever notice if I just pull this one". I hope you notice, I hope I show you, I hope I stop making excuses.

Permanent Reminder

Does anyone else have an indentation on their index finger which will likely always remain? I tried taking a few photos but it didnt come out too clearly (dont mind the wrinkled shirt I used for contrast- haha). From the years and years of picking, which I do primarily with my left hand (although I'm right handed) I have an indentation caused by my thumb nail. When I put the two fingers together to pull the culprit hair, I press into my index finger, and over time its gotten worse and worse.

Sometimes, when I'm feeling especially tweezer happy, I will try to remove the indentation. Trich has caused me to have a freakishly high tolerance to pain. i can literally stick a pin or the tweezers into my finger and just pull back the skin. I know, it's a little disturbing but I'm trying to be more honest than I've been. For a few days afterward it is obviously much more difficult (and painful) to pull with my dominant pulling hand but the tweezer has always been a good back up and, let's be honest, it's never really stopped me from pulling.

In an effort to curb some of my eyebrow and eyelash pulling I've tried to focus more on other areas where the missing hair wont be so noticeable to the casual onlooker (again, this is incredibly and painfully embarrassing to admit but I'm trying to be more honest). As a girl, we can blame certain missing hair on waxing or shaving and guys really don't seem to mind. Lets just say I have gone to town lately and the indentation on my finger is more pronounced then I can remember. Even the woman at the nail salon commented on it whereas usually they just look puzzled as to what would cause such a mark. Even if I finally manage to beat this stupid disease, I would imagine that this will be my permanent reminder of the years I spent pulling away my self esteem.