Becca’s Story- A 19 Year Old In an 80 Year Old Body

Becca’s Story-A 19 Year Old In an 80 Year Old Body

Hi! I am Rebecca V.

I am 19 years old but I feel like I have an 80 year old body.

I have been diagnosed with HEDS and Fibromyalgia.

My fibromyalgia diagnosis came after the EDS diagnosis.

What does this mean?

It means that my collagen is faulty and my joints are constantly popping, slipping, sliding, and dislocating. It means that if I do a task for too long (like knitting) my shoulders, arms, and hands will not work properly and hurt for days. Sounds like fun right??? My body literally falls apart with everyday activities.

It means that when I was younger I seemed to ALWAYS be in walking boots because of one injury or another. I would sometimes be in a PAIR of walking boots. NOT FUN. We tried foot surgery to remove the extra bone in one foot and all that did was knock me completely off my feet for several weeks. It did not solve the issue at all.

Do you know how much fun it is to go to the beach two weeks after foot surgery? Not too many beaches have fully handicapped accessible beaches, but my grandpa was having surgery and we wanted to be there, so it was right then or never.

In high school I began having pain so bad I could barely stand or walk. My body hurt everywhere. I was 17 years old and spent all my time laying on a sofa or in my mom’s room because the sofa was too hard to get up from and caused me immense pain. I was like this for months. EVERY fiber in my body hurt. I cried if anything touched me. Just wearing clothes caused pain, no matter how much we tried to soften them. You don’t realize so many things in your life that you take for granted until you can’t do them. I couldn’t have anyone touch me without me crying, so that means no hugs. 🙁

In February 2014 I finally had enough and went to our family doctor (before this we felt it was just EDS related because so many things are and don’t seem to be treatable) and he began me on a few medications and made referrals. It was great!!! The medicine helped for about a week and then BAM! back to excruciating, never, ending pain. It became so severe that I could could barely move and could only lay on the bed. I would also collapse a lot because my legs were not working properly. I had to apply to graduate early even though I had been taking advanced classes and receiving college credit through my high school. Thankfully they accepted my papers and granted my early graduation, but I missed out on all the fun senior year activities.

Shortly thereafter I had my first appointment with a rheumatologist, Dr. Stern and he diagnosed me with Fibro in ADDITION to the EDS. Well, that explained a lot!!! Not only did my joints and anything with collagen bother me (my stomach especially) but all my nerves were on fire. He has been great though. I change medications as I build an intolerance or as we discover they aren’t working. He also offers supplements and checks on my health as a whole while trying to encourage me to live life.

My favorite appointment was the day my mom and I were at the appointment and he mentioned that fibro can be hereditary and she mentioned she had been diagnosed years ago, (as well as my Grandma) but she didn’t pay attention to it since there wasn’t a treatment and she figured our pain was EDS related (she manages it without medications because she is stubborn). And he told her, in no uncertain terms that I was obviously in MUCH more pain than her and I needed medication. Not that I like taking medications, but having a doctor who understands was great.

I still have pain and can barely sit or walk some days. I still have to check clothing for softness before I can wear it. I still have to use special soap to wash my hands or they peel and burn like crazy. I still have horrible stomach and girl issues. I still can’t work outside the home or commit to doing things with my friends and I use mobility aids (walker, wheelchair, grabber, shower chair, etc…) to help with life some days, but I do have a few good ones. I try to remember no matter how terrible I feel, there is always going to be someone else that is way worse than me. Since my diagnosis I have become closer with God and try to remember that He has a plan for me. 🙂

My diet has been reduced to chicken, eggs, fruits, vegetables, breads, and oatmeal, but I can still eat. They have no idea what is wrong with my digestive system, but we are beginning a journey to find out.

Some days my life is depressing. I mean why did I have to have EDS, Fibro, and GI issues? While my friends are going to college, starting jobs, getting married, and having babies I am happy to just make it to the store a few times a month.

But other days my life is good. I make awareness bracelets, knit scarves, help my mom with her blog here at The Zippy, and at www.TreasuredTidbits.com. I also help her and my sister with maintaining the house when I can because three EDSers can do a lot when they work together. 🙂 I like to pin ideas from Pinterest, sing Disney and Country music, read, and create anything I can find supplies for.

I try to be positive and laugh as much as I can.

When people look at me in pity and ask how old I am, I tell them. “I’m 80 and I just look great for my age!!!”

So try to be positive because there is going to be light at the end of the tunnel.

Also remember that ANYTHING is possible when you follow God and let him lead the way!!! 🙂

What do you do to keep you busy?

How do you deal with the fact life can be so unfair?

I would love to hear you coping mechanisms below. 🙂

We love sharing how others win their daily battles and deal with their chronic illness.

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Tags: Collagen, EDS, Ehlers Danlos Syndrome, Fibro, Fibromyalgia, Frequent Fractures, GI issues, HEDS, Walking Boots, Walking Casts

My Family's Personal Stories, Real Life Stories | TinaMiller | May 16, 2016 10:46 pm

2 Comments

By Nata, May 31, 2016 @ 11:43 pm

Becca, you did a great job describing EDS. I applaud you for your positive attitude. I hope you can take some college courses, perhaps on the internet. None of us knows why we have EDS, but your writing will help the ‘normies’ learn about it.