"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘Guest Post’

30 Things….

In honor of Invisible Illness Awareness Week, I have asked my daughter to do another guest post. She has answered 30 questions about EDS to bring awareness about her medical condition and I am posting it here:

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Ehlers Danlos Syndrome.
2. I was diagnosed with it in the year: 2011, but that was a year after we knew what it was.
3. But I had symptoms since: Very young.
4. The biggest adjustment I’ve had to make is: Going to different measures to protect my joints.
5. Most people assume: Well, when I’m in my wheelchair, people assume I’m either paralyzed or mentally retarded.
6. The hardest part about mornings are: Waking up still fatigued.
7. My favorite medical TV show is: None. Because they’re all full of crap.
8. A gadget I couldn’t live without is: I would say my wheelchair?
9. The hardest part about nights are: Trying to fall asleep with your adrenals still going.
10. Each day I take 34 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Don’t like them because they often involve needles.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. Because you can actually pretend to be fine if you want.
13. Regarding working and career: N/A
14. People would be surprised to know: I’m actually fulling capable of walking and an intelligent conversation?
15. The hardest thing to accept about my new reality has been: So many things.
16. Something I never thought I could do with my illness that I did was: Make a difference.
17. The commercials about my illness: Are quite unhelpful considering they DON’T EXIST.
18. Something I really miss doing since I was diagnosed is: Gymnastics.
19. It was really hard to have to give up: Sports.
20. A new hobby I have taken up since my diagnosis is: Music. Theatre. Singing. Compulsively Interneting.
21. If I could have one day of feeling normal again I would: Do gymnastics again.
22. My illness has taught me: To not judge a book by it’s cover. That you don’t have to be afraid of what you don’t know. Maturity. Responsibility. Honesty. Faith. Hope. Empathy.
23. Want to know a secret? One thing people say that gets under my skin is: “You’re too young to be in a wheelchair” “You’re too pretty to be sick” Yeah, well reality doesn’t FREAKING CARE.
24. But I love it when people: Help me with anything. So many people help me in so many ways.
25. My favorite motto, scripture, quote that gets me through tough times is: “The Lord your God is in your midst, a mighty one who will save; He will rejoice over you with gladness; He will quite you by his love; He will exult over you with loud singing” Zephaniah 3:17 (My favorite bible verse), “Strengthened with all might, according to His glorious power, unto all patience and long suffering with joyfulness” Collossians 1:11, and of course, “This too shall pass”. Can’t leave that one out.
26. When someone is diagnosed I’d like to tell them: That it will get easier.
27. Something that has surprised me about living with an illness is: That you can help people with your suffering.
28. The nicest thing someone did for me when I wasn’t feeling well was: Listing those would take very, very long. So let’s leave it at so many things.
29. I’m involved with Invisible Illness Week because: My mother roped me into it.
30. The fact that you read this list makes me: ?

You can help raise awareness by clicking on the picture below and copying the 30 questions. Share your answers on Facebook or your blog to help the people around you understand your life more.

30things Our 30 Things Meme

Click to go to the website with the 30 Things Meme

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“Strong is what happens when your weak runs out” – A guest post by Emily

11 years old, and EDS had struck. I lost my life. Now the meaning of  “Hey mom, I’m going to the park with the neighbor kids” doesn’t mean anything. The things that gave me a rush before are pointless. Now going to physical therapy is as normal as going on a picnic. Going to the doctor’s office is as normal as going to the mall. Taking meds is as normal as asking mom for a piece of gum. Putting braces on is as normal as changing clothes 4 times a day for a little girl. Putting a dislocation in is as normal as putting on a bandaid. Putting a hard collar on is as normal as putting your hair up in pigtails. Sitting in a wheelchair is as normal as riding a bike.

And yet I get up everyday. I deal with the same issues everyday. I put a smile on my face. I stay strong. I deal with the pain. Every 5 minutes I have to stop what I’m doing to put a joint back in place. No matter what I do I am still in pain. I can’t walk for long, but I can’t sit in a wheelchair for long. I take medicine 4 times a day. Every single day. Whenever I do something to relieve a problem, I get 15 more. Whenever I put a joint back in place, my skin splits. Giving me 1 more problem to deal with.

You can see that EDS is a real thing. 1 in 5,000 people have it. And yet doctors say we’re faking it. That we have gone mental. That we don’t have pain. We want attention. That we are blatantly lying to their faces. Well, Doc, where’s the proof? We have presented our physical proof to your, where’s yours? We get treated like crap by doctors, and yet we have no choice but to go back to them. They tether us to them using medicine that we have to get renewed every 3 months.

When the outrageous is normal.

When time feels like an eternity when you have chronic pain.

And yet EDS has made me a better person.

A day in the life of an EDSer – A Guest Post

I am pleased to present a guest post by my lovely daughter, Emily. She decided to write a post about what a day is like for her. Beware her weird and wicked sense of humor. Enjoy!                                 ~ Beth
A day in the life of an EDSer

By Emily

9:00 AM : Mom wakes me up to take morning medicine, which I take 3 pills with my eyes closed, and still half asleep.

9:01:02 AM : Back asleep in approximately 1.2 minutes.

11:45 AM : Finally Mom wakes me up, and I open my eyes to a cat perching on my chest and a dog licking my hand.

12:00 PM : I’m supposed to take Zyrtec and Zantac…I usually wait as long as possible. 😉

12:05 PM : Normally spend 15 minutes trying to find something that I can eat, which is normally a couple bites here and there.

12:20 PM : TRY to eat with a cat curled up contently in my arms, refusing to move.

1:00 PM : TRY to do stuff on the computer with, again, a cat curled up contently in my arms. ( I’m starting to see a pattern here )

2:00 PM : Get up and walk around for a few minutes.

2:01 PM :  Normally dislocate about 30 joints running down the hallway to get away from zombies I think are hiding and ready to come out and grab me and take me to their leader. ( I wouldn’t do well in a zombie apocalypse )

2:05 PM : Wrap, tape, and brace 30 joints. Consider for the hundredth time taking anxiety medicine.

3:00 PM : Take 7 more pills, finally getting around to taking Zyrtec and Zantac. 😉

4:00 PM : Have a snack, play with the dog if I feel like it, if not, I just harass him with cookies. ( He’s addicted…Kinda my fault 🙂 )

5:00 PM : Start trying to see what I can eat for supper, which, again is usually a couple bites here and there.

6:00 PM : Start trying ( Usually unsuccessfully ) to get in the shower.

7:15 PM : Actually get in the shower

7:30 PM : Start falling asleep in the shower.

7:35 PM : Decide I should probably get out before I drown.

7:45 PM : Crash in the recliner.

8:00 PM : Cuddle with the cat and dog.

9:00 PM : Start getting ready for bed.

10:30 PM : Take nighttime medicine, which consists of 12 pills. Normally getting about 7 out of 12 of the pills stuck in my mouth.

10:35 PM : Wash mouth out thoroughly. Stupid pills.

10:40 PM : Get on the computer ’til my medicine kicks in.

11:30 PM : Start falling asleep while still on the computer.

11:35 PM : Decide to get off Facebook before writing a REALLY stupid status update. ( Trust me, it’s happened )

11:45 PM : Start going to sleep.

12:00 AM : Actually fall asleep. If I’m lucky.

9:00 AM : Do it all over again 😉 .

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