Kingdom of Knuffel

I already spent so much money on conditioning treatments :'D before we knew what caused it, so I wasted the money because the pills were still making it worse the whole time. I've been doing really expensive ones since summer.

Expensive doesn't always equal actually good though, especially in that area, in my experience... I can only recommend giving your hair some good old oil treatments :)

No, the one I've been doing is expensive because it's good. It's not just a conditioning treatment (which targets only the outer layer) but actually goes in and repairs the hairs from the inside. My hairdresser does it for me, it's not something you can really do yourself, but a professional treatment.

[jacobgrey]

I really hope that your hair recovers soon
Breakage sucks especially as a side effect of meds
I meant to ask you about your condition before
if you felt comfortable talking about it that is
I too have a medical condition
(actually several but one in particular that really hinders me)
and sometimes I talk to people about their conditions
and it helps us not feel like we are fighting it alone

I know what it's like to not feel like yourself
Without my blue hair I'm simply not myself

Oh yeah, I'm totally comfortable talking about it! I'm actually deliberately working on talking about it more as I have a tendency to struggle on in silence, and I want to change that so people will actually recognise the effort and work I have to put in just to keep things going. And also maybe realise about what it can cost me when they screw me around :'D

I have fibromyalgia. In my particular case, mostly it means I have hypersensitivity and extreme reactions to a lot of stuff, especially touch or sensation-based experiences. So I'm very reactive to heat and cold for example. It can feel physically painful for me to be just a degree or so colder than my 'comfortable' temperature, which is a very slim range. I also can get flare-ups where touch becomes very painful, even a light touch would feel like being punched. Loud noises aren't good at those times either. Recently as my flare-ups have been bad with coming off the meds, I've had times when something tickled me - like J brushing my skin with his arm when going to hug me - and the tickling sensation just reverberated through over and over and became really painful. Things like that. Also general fatigue, insomnia, and some cognitive problems, mainly brain fog and short-term memory loss. There's a lot of layers to it but this is the simplified version haha.

Jacob I am glad you are going to talk about it more - it's good to talk and we are always here *hugs*

Sorry it took me so long to reply.
Oh my your condition sounds like it gives you quite a bit of trouble :(
I'm sorry for the trouble it causes you
I know there's no cure for it but I just hope
you have more good days than bad ones

I suffer from hidradenitis suppurativa
It's a skin condition where I have abscesses and open wounds
all over my body. It's really painful and horrible to live with
no matter how many showers I take I smell like the dead
I feel like a monster and the worse part is that I'm young
and it's not particularly a visible ailment so many people assume I'm lazy
I've had people stop me in the store because I ride in one of the
mobile carts sometimes when the pain is really bad
They think I'm just some lazy person who don't want to walk
I'm also heat sensitive
I have a higher pain tolerance than most but
since there is also no cure for my illness
or any effective treatments for that matter
I know I will spend the rest of my life in pain.
I developed this illness when I was 12 years old
so I never had a chance to get a job
that made getting on disability hard

just know that even tho we have different ailments
doesn't mean I don't sympathize and understand a bit of what
you're going through
you're never alone ❤

Thanks MissNikki!

I don't feel like it's too bad. I think mostly because I have a positive mental attitude and try to ignore everything and focus on just doing what I can manage to do. Every now and then it will get me down but I think the mental power can really change how bad things are. I can be a positive person with a slight disadvantage or I can be someone who spends their whole life feeling sorry for themselves so I try to be the first.
I get that with it being invisible too. I have a card and badge I'm supposed to use on public transport which indicates that I need a seat, so people are supposed to offer you theirs if they see the card or the badge. But no one has ever offered me a seat so in the end I stopped using them. They see me as just a normal-looking lazy person too. Probably doesn't help that I've put on weight over the last couple of years so I likely look like a fat lazy person too

I wish I could get disability. The system here is so screwed. Even right away going through the assessment questions to find out if you can meet with someone to be tested, I fail. Because I can walk more than five paces unaided and I can cook my own food. So apparently if you can do those things you aren't disabled at all. Thanks, government

I googled the name of your condition and saw some really painful looking images D:

I agree your mental state has a lot to do with how your illness affects you
I'm much happier now than I was a year ago
I don't fool myself into believing that my depression is completely gone
but I do have a much better outlook on life than I ever did
it helps a great deal!
you have to basically exaggerate in order to get disability
when it comes to those sorts of things
I can cook my own meals and I can walk without assistance on my good days
I write all my information based on my WORST days
there were days i couldn't even get out of the bed by myself
Thats how I ended up getting disability
but I had to appeal and get a lawyer also
It's set up so that people who are REALLY disabled have a hard time getting it
you have to meet impossible deadlines and jump through hoops
and is very hard for anybody who is truly disabled
it took me a while to get mine
about 2 years from the start of my claim
it was hurtful hearing people accusingly say there were jobs that
i COULD have done but didn't attempt to go for with my condition
but it was a very short list and my lawyer pointed out
that I would need to shower several times and I couldn't do that
at a job of any kind
I encourage you to keep trying even though it's a long hard process
especially if you need the money
it sucks that no one would offer you a seat
very few people offered me a seat when I was pregnant
I guess they just assumed I was fat xD

As for my condition I have stage 3 which is the worst of the worst
so yea the google images are pretty close
to what happens to me on the regular
All I know about your condition is what I've read online
and what others have told me. I'm really glad
you have a positive attitude about it ^w^
Don't let it get you down

In summary: people mostly suck

I already know that there's not much point in trying really. It would be nice to get the money but people have a hard time believing fibro exists, let alone putting it on the list of disabilities that deserve payouts. Even if I did it based on my worst day, it would take them about 3 minutes to find out that I walk around a lot for work since that's the only way I do make money now.

I feel like I have lots more to write in response but today I'm sleepy

maybe later

Kingdom of Knuffel

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