My best friend of 22 years has EDS.
She also has 2 kids.
She has followed her heart, and lived her dreams her whole life.
I envy her so much it hurts sometimes.
I've tried to get pregnant. It'll be 2 years in November since my hubby and I started trying to conceive. Nothing yet. I've had some ups and downs, and thought I was pregnant when I missed my period for 2 months... But no... My body was playing a very cruel trick on me.
I had dreams of becoming a speech therapist. I wanted to work with deaf and hard of hearing children, to teach them how to speak. I wanted to make a difference. Something important. Using sign language every day would cause too much fatigue and pain. And the days where I need braces, I would have a "speech impediment" due to lack of movement. I also would be unsuited for the college/university life. There's too much running around, and juggling of time, and the need to keep working as I put myself through school.
On the weekend my friend stood up from a squatting position, and dislocated her hip. She tore a tendon, and her hip socket filled up with blood, and she had to go to the hospital to be put back together. She had to pack up her 2 kids and move in with her grandparents until she is healed, because she can't take care of them on her own.
I am afraid that with my husband and I both being disabled, if we were to have children, and we were both out of commission at the same time, we might not have the resources available to help us out. And what if, god forbid, something happened to my husband, and I had to take care of the kids by myself? I don't think I could do it.
Even though my best friend has worse injuries than I do, requiring medical intervention, I have injuries more frequently. She goes to the doctor, and says "see, it's dislocated" and they have no choice but to believe her, and they give her pain medications - strong ones. I go and say "I put it back in myself" and I get laughed at, and I still get called a faker, and no way is anybody going to prescribe me something stronger than Tylenol 3.
I dislocated my hip in bed last night... Rolling over. I got it mostly back in after about 10 minutes, but it took the better part of an hour before it felt like it was where it should be. I'm at work right now, and I've been limping around all day. I started to think of a brace last night. One that would be similar to a wetsuit, going from my knees to my elbows to keep me in place. I don't know how realistic that would be, to wear it every day. But if I could figure out the logistics, I think it could be beneficial.
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3 weeks ago
4 comments:
Oh how I read this at just the right time!!! I also have EDS and for sooo long people from doctors to family thought I was crazy or faking and it's taken me 15 years and a million doctors and specialists to get people to understand me at all. Keep trying with doctors bc you'll find one that listens eventually and tries to help you! I had a couple really good months (pain wise) and let myself start to think about the idea of having a baby, which I'd never let myself do before, and then last week I had a flare up like none before and it's just completely broken my spirit this time. On one hand I try and remind myself that this is not terminal for me and I'm so blessed in that aspect and many other aspects in my life but it makes me so mad when I let myself consider how much EDS gets to "choose" for my life. On days like today I struggle to walk the entire day, none the less even think about walking while pregnant and especially not being required to carry around a baby. So trust me you're not alone in your envy of others but it helps sometimes for me to remind myself that even with all my pain and frustration someone out there envies the fact that I'll get to wake up next to the person I love for many more years to come (God willing). So hang in there and I understand your frustration completely ; )
I know what you mean. I've been able to do a lot of things I wanted to do, but now I'm 35 and EDS is putting it all in jeopardy. We were able to have one child (pre-EDS diagnosis). I've been longing for another child for 9 years now! No doctor is able to tell us for sure why we can't have just one more, and it is very frustrating. Meanwhile my EDS gets worse and worse and I seriously wonder if I could handle it anymore. I held a friend's baby for 45 min. and my shoulder was messed up for 2 weeks! On the other hand if we are able to adopt or have another child I would be ecstatic until the reality hit. So I totally know what you mean. It's hard not to be envious of things you just always "assumed" would be part of your life. Now everything is different and it is very unsettling. But, it COULD BE MUCH WORSE! :)
I really do understand this. It's so hard sometimes. Internet hugs for you! ((((HUG!))))
Thank you all for your understanding. It really does help to know others are going through this as well.
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