Yes it was cut but not in a week, LOL!

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I don’t get why people look so confused! I know that hair does crazy things and especially when our hair has lots of texture like mine but come on people…I have worn my hair curly to straight for more than 1/2 my life. However, when you do it from week to week, something that is not so normal for me, people really get confused.

So almost 2 months ago I cut my hair to the length you see above (when straight). Then I wash it and go and that is it’s natural curly state. Then I will go back to the straight format about 10 days later simply by blow drying it and flat ironing. However, when it’s curly it looks significantly shorter and people think I have cut it even more and tend to get emotional about it, lol. They act as if it is their hair. They even get confused and think I have done something dramatic to my hair and that I done some chemical thing to it instead of simply washing it. I tell them this is actually it’s natural state and straightening takes longer and more work.

Funny enough the reaction comes from people who seem me daily! Moreover, those who seem to have a problem I actually have learned not to care because 1) it’s not their hair 2) it’s only hair and it will grow back and it if it doesn’t oh well because I had to cut it because of my illness to fix the problems I was having and 3) everyone is not going to like everything you do and I am okay with that! 🙂

Those who love it I was surprisingly shocked about. More men than I expected noticed and complimented me and that is saying a lot since men are usually the ones who do not notice much and tend to forget to compliment within their own household on such little things. It is a known fact that most men do not pay attention to detail

Hairy Situations…An Update and WONDER

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SO as I said in my previous post Ripping off the Band Aid I will give it 2 months before I make any rash decisions on what to do about my hair situation. I will try the hair products suggested by my friend who has been doing my hair for so long and I will make a dermatologist appointment and try whatever methods they suggest. I have also tried a low maintenance solution in the meantime that is taking some getting use to for me because I am just not use to all the ins and outs of the world of hair that does not grow naturally out of your hair.

When you go into a hair store there is so much in there to overwhelm you. There are products for black people and white people, but not many for mixed hair. I struggle often because people say you are black. I say that may be true, but my hair does not know that! I have so many things in my family and my grandmother on my dad’s side really is predominantly Native American. It’s amazing the looks I get when I walk with her and then I saw that’s my grandmother, lol because many black people often say I have Indian in my family but I really have quite a bit in many aspects not just with my dad’s side either. My  mom’s side has it as well but at My great great grandparent’s level.

SO needless to say when I have gone into hair stores over the years with friends they (the store associates)  have assumed it was not for me. But I have been intrigued asking what things were and why. My friends have always picked on and laughed saying I would not understand their struggle and I did not but now I kind of do. However, it took illness to understand it. Even now though it’s a struggle on a different level because the products are made for one ethnicity or another not a middle ground. SO they have to almost ‘change’ the texture of my hair to make things work sometimes. They have to tease it or out extra holding spray or add wraps where they would not for normal hair and then apply solutions. I almost never go alone to the beauty supply/hair store unless I already know what I need which usually requires long amounts of time pouring over it online doing research first or talking with friends because I am so use to wash and go for so long. I have always had very easy low maintenance hair. This situation is very frustrating, but I know I can do it and I pray that some positive results come of it so that I can relax and learn something new about hair, lol.

Ripping Off The Band-Aid…Here Comes The RAW Emotions

1-20-2015 317 -my hair last year at this time 1-20-2015 242-my hair in its natural state (same length just curly)

Last night I cried…i allowed myself to just let the tears flow, not like a blubbering mess but just flow. I also allowed my husband try and comfort me which I have only allowed a handful of times since knowing him as I usually prefer the comfort of myself or females, lol. Anyways, I cried because that morning I looked in the mirror and my hair was nearly gone after straightening once I took out braids that had been in for a long time.

With MG I sometimes have trouble doing my daily rituals because of time or strength issues so I have to pick quick easy tools to help me.I got my hair put into braids because doing my hair puts a strain on my fine motor skills that needs to be saved for typing for work, brushing my teeth, and going to the loo (at work, since I have a bidet at home and other tools) and carrying many heavy items in a fitness and wellness capacity at work.

Well I did the braids too many times back to back between that,the MG, and stress, I have very super long strands,and very shorts, and well I look butchered. When I went to work I did not have time to think much about it. I made the best of it saying I want to cry but who has time and made a hair style I figured I could get away with yesterday. But by the end of the day I was so exhausted fidgeting with the hairband that kept falling off and the bun that could not hold b/c my hair was so thin that when I walked in the door and my husband asked how my day was I said, “my migraine has come back, my anxiety is up because I missed my workout and I have no hair” and began to cry! The worst part of him consoling me was and usually is, he is not always sure what to say. He sat me down and offered me water, and wished he could hit the lottery to find a cure or an awesome weave. I said I simply wanted my hair back. My hair is longer the parts that grew but it is not healthy. He sat with me and rub my head and my hands and had his head bowed. He looked as if he was blinking back tears himself which made it hard because I could tell it hurt him to see me so hopeless because I am always to strong and ready to come up with the next idea! After a few more moments of that and no real solution we decided on dinner and just watched television and talked. Then I set up the idock and we listened to my nature sounds so that I could hear a good thunderstorm last night.

However, I did buy some hair products (Sunday) and I will give it about 2 months. This was for my temples before I straightened my hair because I saw that my hair was thinning there first before I could see all the other damage. If I feel I see no improvement I will be cutting it because my hair usually bounces back fast from anything and though I have this disorder I cannot keep holding to ‘past’ if its not going to work. I will also try going to the dermatologist as well. But that is hard between all my routine dr. visits without taking off work. I have a dr. visit as it is about 1 a week if not 2-3 times a week. Pray for me because I definitely a ball of emotions, though we should not ‘be our hair’ we as people are attached to our hair. Men can say they are not until they begin to bald and hold on to it while it recedes into horrid shapes, but we all know the truth we love the hair we have nurtured most of our lives. Therefore, until we decide on our on accord to cut it, or style it a certain way we a most definitely hurt when things like this happens. I’m totally praying for peace!

Myasthenia Gravis and Strange Reactions

So sometimes your medications have side affects that state they will cause certain reactions like bruising or may cause issues when in the sun too long. However, you also find that some are just the strange reactions of that come with have a disorder that the doctors simply cannot explain. In my instance I was extremely healthy before the diagnosis and I am very healthy while dealing with disorder which makes it easier for the professionals when dealing with medical issues such as trying to figure out why may see a sudden change in heart rate, blood pressure, or respiratory issues since I have no health issues that affect that. My average heart rate is usually around 55, blood pressure 110/60, and I forget my respiratory rate. So when things are wrong they can usually find the issue immediately and fix it.

This next few things are a bit embarrassing and hard to talk about but maybe it will help a few of you that are going through this.

SKIN REACTIONS:

However, if something random happens they usually have to send me to several specialists or say they have no idea and say it may be a symptom that MG people get and to refer to my support groups because they may know more than the doctors. It is strange to hear that but surprisingly enough they do. I have had strange bouts of whole body skin flaking or skin peeling like a sun burn year round. It’s worse just after I shower and exfoliating makes it worse. I can put on loads of oils and lotion and halfway helps but it embarrassing. I find that sometimes every other day without a shower and using a sponging system on my extremities in between helps. I still wash-up but I use a spray handle from my shower or wash-up at the sink. This way my body’s natural oils can help my skin repair themselves. I also use astringent like seabreeze to cleanse my skin on tougher places like my arms and face that flake/peel more often. They peel so heavily it looks like a combination of dandruff and ash.

HAIR LOSS:

Some of the medications state they will cause hair loss or thinning; however, none of the ones I am on state it directly. My hair has completely changed texture in some ways. It gets dry way faster. I have to keep protective hair styles like braids and keeping my hair out of ponytails that stress the hair at the edges. Having long hair this is hard because when it is hot or your hair is in your face, your first instinct is to throw it in a ponytail; however, when you cut your hair you find that it sometimes be more maintenance than you like because you cannot just pull it back. You have to actually do it, LOL. When my hair is long and I don’t do it I can actually pull it back and keep moving or wet it and keep moving. But when it was short and I didn’t do it I looked like a chia pet and had to actually comb it and style it. Now that it is thinning I have to put special oils in it near the temples and edges, as well as wash it less frequently where I use to wash it daily. I also have to use special conditioners that cost way more but help control thirsty hair and leave in products that help give it life. I now live at sephora for my hair needs, LOL.

PREVIOUS ISSUES MAGNIFIED:

If you have preexisting issues, they will likely be magnified. I did not have many preexisting issues since I was very healthy but I had some minor things like geographic tongue. It never bother me before but now it has become symptomatic. Now when I eat spicy or sour food my tongue burns a bit. I had geographic tongue for years about 6-12 months before MG and then it has only started to bother me in the last 6 months. That full time span was 3 years so it has only bother me the last 6 months of 3 years. It’s annoying but not a big issue.

I also have an overactive bladder and when I am close to needing treatment watch out world because you will get RUN OVER, LOL. I am a steamroller on legs. I will run you over to get to the bathroom. When I was younger I needed medication but since then had gained control over this. Once diagnosed I found that this dwindles. The urgency due to fatigued muscles are not going to allow me to hold it in no matter how great my kegle exercises have prepared me from teaching Pilates. So where ever I go I now look for the restrooms. It only becomes urgent near my weakest times but it is still an annoying factor to deal with that people must deal with. I find myself sitting on the end of rows, near exits, and so on so I do not interrupt others in case I need to get out because I refuse to have an embarrassing moment.