Trying to Wrap My Head Around This

I’m losing my hair.

Auto-Immune Disease SUCKS!

I really could just stop this post right there, but I have SO much more to say. I don’t have all the answers, I probably have more questions than anything else. So, I’m just going to lay it all out and let you guys ponder the results.

Is wearing a wig being “fake”?

This is a loaded question, I get that. It immediately makes people uncomfortable, heck it makes me cringe just asking it. But I really feel like it’s a valid feeling those of us with lair loss have and it needs to be discussed. Because, let’s face it, (as women) we tend to put a lot of stock in our looks. We love to feel pretty, and our hair is often a big part of that. When we actually wash, dry, and style our hair it is cause for celebration and glamour shot style selfies. So, when that hair starts to come out in clumps, it can be extremely disheartening.

What’s the answer? Do we cut it super short and hope that will help?

Personally, I have been steadily cutting my hair shorter and shorter for the last two years. I used to have super long (gorgeous) hair! I could have done a shampoo commercial, it was by far my best feature. So, when it started coming out in huge handfuls, I knew my illness had finally won. One night my brush got stuck in my hair and when I pulled, every hair was coming with it. So I cut it out… then the rest of it. I cut all my beautiful hair off because of a brush. Then I went to my stylist in tears. She fixed my ridged cuts and then we decided to add on a fun color, to make up for my loss. I’ve enjoyed playing with that since then, but now (with the rate my hair is coming out) I can no longer use the harsher colors. I’ve got to go natural, or super gentle. I am all the way up to a pixie cut and I really don’t like it, but I’ve found my hair falls out less with it this short. Nevertheless it is falling out and I am trying to figure out what I’m going to do when it is too thin to be comfortable.

Back to my main point. I am a very “proud” person. By that I mean, I couldn’t care less what people think of me. I’m over-weight, I know it. But if someone else has a problem with it, that is their problem, not mine. So in my head, I know I should just embrace my hair loss and go with the “body positive” approach. On the other-hand… I can’t even imagine doing that. I love my hair (my old hair) and I miss feeling pretty. I can’t wear make-up because of my allergies, so a cute outfit and interesting hair style just made everything better. (note- I am not a “girly-girl”, like at all, but who doesn’t want to feel pretty every once in a while) So, I’ve started looking in to wigs.

I have a friend that is currently transitioning to non-binary. They are so beautiful, inside and out. But they still deal with a similar issue, are wigs necessary to feeling good about your appearance? My friend said when they’re feeling more feminine, a wig can be very empowering. But they don’t feel the need for it on the more masculine days. I asked what type of wigs they typically wear, whether they’re similar to their normal hair, or totally different. They said that most of their wigs are completely different, and it’s good to have a variety based on the situation. I found this very helpful and thought others would be interested as well.

Ok, back on track. The question for me is similar to what I had asked my friend. Do I go for something closer to my own hair (and make it look totally natural)? Or do I embrace the full “wig-life” and have fun with it? Do I get long, colorful, interesting wigs? Should I have several styles on hand? I know that I have time to figure this out, but it has been on my mind and I know there are other people out there that are in a similar boat.

I decided to ask some people on Facebook (in closed groups) about this subject and I got some good insights.

I think all my life I found my hair was the most attractive thing about me. I had thick, luscious, dark brown, straight Asian hair. I now have curly dried out fried hair that falls out so much I want to shave it off. I don’t think I am a wig person. I think I would rather be a scarf lady. So many beautiful scarfs out there. Already starting a collection.”

“My hair is coming out in clumps, but I still have long hair. I think the next time I go in to see my hair stylist, he will recommend taking some off so it doesn’t look so stringy. I would love to say I’d shave it off and proudly go bald if it got to that point, but so much of my identity and femininity is in my hair – just my own opinion. So I think I’d try a wig before shaving it all off.”

“Hair loss can feel devastating. I really panicked last year, as I’m already genetically thin in the hair dept, and I was losing hair – hand over fist. My Endocrinologist said that the sickness,… but especially stress will cause the follicles to stop producing, then in time hair will begin to grow again. But, It’s hard to know, when conditions are so chronic. So, I’ve pondered this myself. I’m not there yet, but I think in my case I would gravitate more to soft hats, rather than wigs for most days or occasions, if my hair loss continues to the point of no return. But yes, I think I would also try a wig, and I do believe it would help me feel better about my appearance. I do occasionally wear hats to hide how thin I am on top, and I changed the color of my hair recently for the very reason of trying to feel better about myself.”

These are just a few of the responses, I didn’t want to put anything that had personal information on here. Over-all the results were torn, which is how I feel as well.

I think what it boils down to for me is this…

Losing hair due to illness is not fun, so we should do whatever makes us feel good about ourselves. If that means wearing a wig that looks exactly like how our hair used to be, go for it! If it means wearing a wig that is completely different and looks like a unicorn threw up a rainbow, go for it! If it means shaving your head, go for it! Our illness has already taken so much from us, don’t let it take your femininity! You are beautiful!!!!

 

An Open Letter to President-Elect, Donald Trump (from a disabled citizen).

We’re on edge. There is really no way around it, people with disabilities are worried about their future and understandably so. This has nothing to do with partisanship, or who voted for who. We recognize that you have won the electoral college and will become our President in January. This is about so much more than that, this is a plea for recognition.

Our plight is two-fold, we need access to essential healthcare and protection from ableism.

Ableism has always been a problem, but has just recently started getting some attention. It encompasses an over-all belief that people with disabilities are not as “good” as an able-bodied person. In Nazi Germany, people with disabilities were killed just for being sick, but here in America it is much more subtle. From jobs that discriminate based on physical ability to harassment in a parking lot by the uninformed. We struggle to find a compromise between wanting to be well and wanting others to accept us the way we are.

Many people with disabilities are dealing with incurable illnesses, chronic conditions that they have no control over. Sometimes they end up in a wheelchair, sometimes they’re able to blend in to the fabric of society without notice (sometimes it’s a little bit of both). Invisible illnesses outnumber the visible. So many people deal with pain on a daily basis and find little to no compassion or understanding, even from friends and family. I am a person with an incurable illness, and I know there are millions of us (yes, millions) that are begging to be heard, but just don’t know what to say.

Most of us have spent years going to specialists, spending every dime we earn on doctors that try to help, but often can only prescribe medication to lessen the pain. We’ve tried physical therapy, holistic/eastern medicine, vitamins/supplements, and everything under the sun to find relief. But in the end, all we can do is live with what we’ve been given. Some people find medications that relieve enough of their pain to allow them to function on a day to day basis, others find that medical marijuana is the only option.

Lately there has been a “crack-down” on pain pills and the doctors that prescribe them. The risk being that many people that start on opioid medication eventually turn to heroin. Unfortunately, this witch hunt has turned on its heels and we’re now seeing that when patients are taken off of their opiates, that is when they turn to heroin. So with all the doctors being forced into cutting out their pain patients medications, there’s a huge influx of drug addiction. Not the other way around.

Another option for chronic pain patients (like myself) is medical marijuana. Several states have just legalized it, but there are still too many that it is considered a crime. Based on hundreds of studies and tons of research, it has been proven that marijuana/cannabis causes far less harm to the human body than most medications that are passed by federally funded corporations. People in pain need to have access to this natural medication, it is as simple as that.

“Obamacare” is a loaded topic, one that often divides even the closest of friends. Personally, there are aspects of the Affordable Care Act that I like, others that I don’t (at all). But the importance of making sure everyone has availability to medical treatment is the real issue and should never be overlooked just because of party affiliation. It is well known that in your speeches and campaign promises, you said you would “get rid of Obamacare”. First and foremost, we need to stop calling it Obamacare. That is a nickname and not official in any way shape or form, let’s call it what it is, The Affordable Care Act. Then, let’s make it actually affordable! Assign a team to the task of making it work for us, for everyone. It CAN be done.

No one should have to fear losing their health insurance just because someone else has taken a political office, but that is the reality many face right now. It is up to you now to make sure that does not happen.

Finally, I want to say this… please be a good person. This position is about so much more than just being a powerful person, it has to be about being the right person. You claim to be a person of faith, I want to believe that is true. I want to believe that you will stand up for those that cannot stand up for themselves. I (and many others) just have not seen that in you as of yet. It is time to be “presidential” and calm our fears. ***Be the good.***

Monsters Living Among Us and Feeding on Our Pain.

*Sits down at the campfire, with flashlight in hand*

Are you ready for the scariest monster story you’ve ever heard?

Over the course of thousands of years, an evil has been growing in our world. It invades people’s bodies, it feeds on their pain and fear. It spreads throughout the body, forcing constant agony on the host. That is how it breathes, that’s the energy it feeds on. So the person slowly declines and suffers an unseen struggle. Others do not (and often cannot) believe them. For many years they were accused of being monsters themselves. They were cast out as demons, or tried as witches. All while the monster inside them feasted on their misery. In later years people assumed it was something that individual could eradicate with herbs and special foods. When in fact, the only relief came when the pain subsided. Sometimes they could reach out to others and find help, but not everyone believed the pain was real. In many cases the monster was so strong that someone infected just couldn’t battle it anymore and took their own life to stop the pain. Even still, people without the monsters didn’t believe. They looked at those in pain and saw only a person, not the struggle inside. These monsters cannot be killed, but they can be quieted. Their food supply can be cut off, by finding people that believe the pain is real and are willing to help them the way they need to be helped.

The scariest part of the story is that these monsters exist, and they occupy millions of people all over the world. They come in the form of auto-immune disease, chronic pain, genetic disorders, and so much more.

We fight every day against the monsters! All we want is to be heard, and to have people believe our pain is real. We want research on pain medication that will once and for all HELP people in pain. We need to stop assuming everyone that takes pain meds are drug seekers. We need to recognize the impact of pain on mental health and take this in to account during treatment. We HAVE to do better! We HAVE to BE better!

We can’t let the monsters win.