Are you having a boy or a girl?

I remember the first time I was asked if I was pregnant…yeah pregnant. Now you might think I really was pregnant and this is normal but no, I am not pregnant, I am not overweight and I do not have a huge gut. What’s really wrong with me, might you ask? I have Facioscapulohumeral Muscular Dystrophy (long and confusing word, I know). It’s pronounced fash-eeo-scap-you-lo-hume-er-all, FSHD for short. Basically it affects the skeletal muscles of the face (facio), scapula (scapulo) and upper arms (humeral). My muscles are different in these areas, for example, I cannot raise my arms above my head because one of the muscles near my scapula is not there, so my scapula stick out when I try to lift my arms.  My shoulders also slant forward and my facial expressions are a little different (people have even asked me if I got botox…in 9th grade. YES I’m fourteen and I have already gotten botox injections, I’m that obsessed with my looks). Sorry, I get a little annoyed with people sometimes.

So a few times (all in the past year) I’ve been asked if I was pregnant. The time that was the worst for me though, was at Lord & Taylor in the mall. We (my dad and I) were at the cash register buying cologne (for my dad obviously) when the lady helping us said, “you’re pregnant right?” My stomach immediately felt hot. I don’t know if you’ve had this feeling, but it happens to me when something bad happens or I’m embarrassed. I responded by laughing it off and saying “no I’m not pregnant and you’re not supposed to ask people that anyways.” Ok..I didn’t say that but I was thinking it. She felt really bad and apologized profusely. She told me she thought that because of the way I was standing (I have a really arched back which makes me walk like a pregnant woman, so I can see where she’s coming from, but it’s just not something you want to hear). I was only 19 years old at the time, I don’t want some 40 year old woman thinking I’m pregnant. It just really pisses me off, because it made me more cautious of the way women look at me. I honestly don’t know the exact reason why, but I’ve gotten a lot of glares from women. I swear they’re thinking in their heads, what a slut, so young and already pregnant, why are girls so stupid. I’ve always wanted to just scream “WHAT ARE YOU LOOKING AT?” but I don’t really have the courage yet, someday though, I will say it.



7 thoughts on “Are you having a boy or a girl?

  1. I have limb girdle muscular dystrophy, sounds like ours is kinda the same. I can’t raise my arms above my head, can’t climb stairs or walk long distance, if I fall I have to have help up, and the list goes on, in fact my dr at the MDA clinic told me a few months ago that he doesn’t want me walking so now I’m in a wheel chair permanently.

      • Yeah I haven’t seen anyone in person with the same as me either.. I see different type when I go to the mad clinic but that’s about it.

  2. Lex your a real girl and true inspiration… not many people would be as strong, positive, or upbeat as you. So proud of what you did tonight!!!!!

  3. Lexi I am so proud of you for sharing all of this with us. I, along with all of our sisters, will always be there for you whenever you need so never ever hesitate to talk to us !! Love you and so proud of you !

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