Pros and cons of Alopecia

If you have visited my blog before you might have seen that I have a medical condition called Alopecia Universalis (AU). There are three kinds of Alopecia:

• Alopecia Areata - where you have bald patches, on your head or elsewhere (not to be mixed up with male pattern baldness).

Alopecia Areata

Source: en.wikipedia.org via Johanna on Pinterest

• Alopecia Totalis - where you've lost all the hair on your head, not eyebrows or eyelashes.

Alopecia Totalis

Source: belgraviacentre.com via Johanna on Pinterest

• Alopecia Universalis - which it total loss of all body hair, no eyebrows, eyelashes, nose hair, leg hair, arm hair, you name it, it's not there.

Alopecia Universalis (this is not me).

Source: alopeciaantics.com via Johanna on Pinterest

I started losing my hair two years ago (March 2011), starting with my hairdresser finding a bald spot on my head close to my left ear. The spot was about 3-4 cm in diametre, but it kept growing and I started losing hair in other places on my head. My eyebrows started to thin out. From March to August I lost all the hair on my head and by November I didn't have any eyebrows or eyelashes. August was also the last time I remember shaving my legs.

"Before" picture from June 2009

Another before picture from November 2010

"During" picture from May 2011

During... from June 2011

Now I look like this. From January 2013

At first I wore a wig to work everyday to try to look normal. I told all my colleagues and my pupils what had happened, so there wouldn't be any weird rumours about me. But by November I mostly quit the wig and went over to head scarfs instead.

One of the first wigs I tried on, didn't buy it though.

My first wig. It doesn't look so bad in this photo, but it had so much hair and  the hair style was very  "celeb fresh from the hairstudio"-not me.

Same wig as above but cut short and with a hair pin in the bangs.

My "real" wig, I bought this to wear seriously. Here it's long, straight from the box.

Same wig as above, but cut shorter. This is the one I do wear, when I wear a wig. It's very light and have a normal amount of hair, sort of comfortable. 

My latest wig, bought this last summer. It was on sale and it's curly like my own hair used to be, well, not THAT curly but still... I thought it would be fun, but I've only worn it out once. Sorry about the weird eyes in the photo...

Now I've been living without hair for a year and a half and I still don't like it, I know that my hair is probably never coming back, but I've sort of come to terms with the situation. Buuuut...... there are some things that bothes me and there are some things that even are positive, even though I don't like admitting it...:) So I've put together a list of pros and cons! (In no particular order).

Pros:

• Don't have to shave legs, armpits or bikini line
• Don't have to pluck and shape eyebrows
• Shorter time in the shower
• Don't have to fix my hair after showering
• No need for hair products, razors, shaving gel, electrical hair appliances
• No sweaty hair in the summers
• No worries about what your hair looks like after swimming in the summer
• Don't have to worry about holding my hair or getting puke in my hair when throwing up (realised this the other day when I had the stomach flu)
• Can't get head lice
• And more I can't think of now...

Cons:

• It's really COLD not having any hair
• Not easy finding well-fitting headscarfs
• Expensive to buy headscarfs (at least the ones I like)
• You can't show your face to anyone without putting on make up first
• If you invest in semi-permanent make up (which I totally recommend) it's crazy expensive
• Wigs are mostly totally uncomfortable, tight and itchy
• The good wigs are expensive
• If you wear wigs all the time, you might have to buy 3-4/year
• People stare at you if you go out without something on your head
• People think you have cancer if they see you have no hair
• My nose keeps running all the time because I have no nose hair
• And more I can't be bothered to write down now...

Well, the biggest downside of them all, which sadly overshadows all of the pros, is that, no matter what, I still feel and look WEIRD without hair.... :(

Anyway, I'm trying to cope and I know there are people out there who are in much worse situations, but it does feel like such a bitch sometimes. I'll be back soon with sewing-related posts, something that really cheers me up and takes my mind off the no-hair situation. :)

Bye for now,

Johanna aka Baldy ;)

(Mostly) Burdastyle slim stretch trousers (plus size)

I am finally feeling a lot better, after having the flu for over a week. Today three quarters of our family were back in business as usual, work, school, daycare, but Mr Red (my husband) still isn't felling well... :(

Everything went smoothly this morning even though I had to drop off both kids, the only mishap was that I totally forgot to put on make-up. Good thing I refreshed my permanent make-up (eyebrow and upper eyeliner) a few weeks ago, so I don't look like a ghost without make-up. :)

Don't my eyebrows look good?! I'm not wearing any make-up in this photo.

I just have to say, if someone with Alopecia reads this, that permanent make-up is DA SHIT! It is so relieving to know that your eyebrows won't go away if you scratch your face. And the eyeliner is always in place. It isn't really permanent, it depends on what skin type you have, but it can last up to five years. My skin is kind of oily and my eyebrows lasted from Nov 2011 until about now, Jan 2013, so just over a year. When I had them refreshed now, we used a darker colour, so hopefully they will last longer this time. It's quite expensive, but totally worth it for the security they give. This is where I go: Make me up. Maria who does the permanent make-up is very good and so nice.

Ok, enough with the make-up.... Let's have a look at the trousers I made a few weeks ago. I have mentioned them several times and here they are...

They are high-waisted, just the way I like them, and have slim legs. I used a stretchy fabric, I think it's polyester, but it's quite comfortable.

 

I see now, in the photos, that there wrinkles on the back of the thighs, which there shouldn't be it you have a good fit. But I don't know, it doesn't bother me that much, at least they fit well over my behind! Or what do you think, any opinions?

This is something I wonder about, what does this mean? Are the trousers too big in the front, should I lower the waistline, do something about the crotch (eek!) fit? Or do they look ok if you look at the other photos?

Here's the zipper, of the invisible kind, and also my label :).

I really like these trousers because  1) they are high-waisted (SO comfy), 2) they have slim legs (stylish) and 3) they're stretchy. I really recommend the pattern Stretch trousers (plus size) from Burdastyle.

 I made EUsize 46 which is the size I normally wear in trousers and maybe they're a tad big, but they're very comfortable. Since the pattern is made for women of 168 cm I lengthened it by 7 cm (I'm 175 cm) which was perfect. The waistband is a bit on the narrow side and I'm thinking of changing that for my next pair. Yep! Already have another pair in mind. I will use denim fabric and take inspiration from my favourite pair of jeans. Maybe a pair in black too.... Already have some great fabric.

Anyway, what do you think of the fit, any thoughts?

Bye for now,

Johanna

Vacation headscarf and upcoming dress

I thought I'd make a new headscarf for our upcoming vacation. Always nice to have something new for when you're going away.

I used some lightweight cotton fabric from my stash, originally from my mum's stash. The pattern is the one I drew up myself using a Christine headscarf as a template, see my first version here.

Not the greatest photo, since I had to take it myself in front of the mirror...

I must say it's a relief to be able to make these scarfs myself, to get the fit I want, because I feel the bought ones can get a bit stretched out and then they're just too big and sort of float on my head instead. The ones I make myself, I can make them a bit tighter and get a better fit.

I'm actually working on a dress as well, from the navy polka dot fabric I recently bought. I traced the pattern of Simplicity 2363, a pattern I bought from Sewessential a while ago.

I will make the shorter dress with short sleeves. But I probably won't have time to finish it until after our trip.

Bye for now,

Johanna

Totally sewing-unrelated post

This has nothing to do with sewing, but I still wanted to post some pictures of my new WIG! Yep, that's right. Normally, I don't like to wear wigs very much because they itch like crazy, but last week I got a wig cap (which looks like a pantyhose-style sock for your head) and TADA! no more itch! The wigs still sit crazy tight around the head giving me headaches, but at least the itch was gone.

And because of that I thought I'd try another wig, have two from before, but not a curly/wavy one, and that's what my own hair used to be. So here it is, one picture with the hair down and one with up.

(Don't my eyes look a little crazy in these webcam photos...?)

I took a chance with the colour, because the colour cards on the website were really weird. This colour looked light blonde/greyish, but it's not IRL. I'm pleased though, because it turned out better than I expected.

Oh, and on a sewing note, I have cut out fabric to make a t-shirt out of stretchy knit fabric... Yikes! How will it go...? You'll see in my next post.

Bye for now,

Johanna (aka Baldy) :)

No, I don't have to shave my legs... - Or - Finally a wearable muslin!

Ok, here's my big secret, well not to people who see me IRL, because it's kind of obvious to them, but on the internet you can choose what you show and not, and I haven't been showing my head in pics because... (here we go)... I don't have any hair. Any, at all, anywhere....It's called Alopecia Universalis, the condition I have. If you want to know more about Alopecia, like there are three kinds, google it for information. So, no, I don't have to shave my legs ever. But I would be glad to do it twice a day if I could get my hair back. You feel kind of freaky without hair.

Well, instead of hair, I need something else to keep my head warm, because it's darn cold without it. I have a wig, but it itches, so I don't like it that much. Instead I ordered some headwear from Christine Headwear and they have been great.

Here's the one I have in silk/cotton.

 I have three so far, but today I felt that I should find out how they're made, so that maybe I could make something similar myself. So I did, and here's the result, not bad, right?!

I was really sloppy making it, not finishing the seams properly and so on. But it looks great and it was just meant to be a muslin, which is totally wearable. Yay! The fabric is viscose I think, and I actually bought it a quite a while ago to try and make a scarf like this.

Well, bye for now,

Johanna