Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Thursday, September 15, 2011

Invisible Illness Week - things you may not know about Ehlers-Danlos Syndrome

Guess what? This week is Invisible Illness Week.  I have a few invisible illnesses.  I am covering bipolar at my blog Survivor.  I will be covering fibromyalgia at my fibro blogSmart Fibro Chick.  

2. I was diagnosed with it in the year: 2009 I was diagnosed with an “EDS or HMS.”  (HMS is Hypermobility Syndrome).   In 2011 I received my without-a-doubt EDS diagnosis from Dr. W (who just happens to be incredibly awesome!).

3. But I had symptoms since: birth

4. The biggest adjustment I’ve had to make is: Not being able to walk very good anymore.  A few years ago I was jogging or walking every day.  Forget hiking, I can’t even off-road in my walker. Lol Oh…and the shoes!  I miss wearing heels and platforms so bad.  Yeah, I always fell in them, and my weak, bendy ankles always made me trip and injure myself, but I loved the shoes!  Now I wear tennis shoes or crocs because they have a flat bottom and are easier to walk in. Booooring!

5. Most people assume: That EDS just affects the joints.  It doesn’t.   It affects every system in your body-all the types do.

6. The hardest part about mornings are: the pain and stiffness.  I’ve been up an hour and a half to two hours and my legs, backs, and arms are still really stiff and hurt bad.

7. My favorite medical TV show is: Scrubs.  I used to watch House until they did the two part episode with House in the mental hospital.  It gave me horrible flashbacks and I haven't watched House since.

8. A gadget I couldn’t live without is: My laptop.  It’s my connection to the outside world.  Right now our internet is down and I’m typing my blog in Word.  I can’t leave the house often from pain and immobility problems so without the internet I’m cut off from the world outside.  Also, I pen pal, it’s one of my favorite hobbies, and I type the letters on my laptop.  I don’t have the hand strength anymore to handwrite a letter.  I also take classes online.

9. The hardest part about nights are: The pain and the insomnia.  Even worse are the nightmares about pain.

10. Each day I take __ pills & vitamins. (No comments, please) 27

11. Regarding alternative treatments I: I meditate, drink herbal tea for relaxations, drink ginger tea for pain relief, take vitamins and a few select herbs (that reminds me, I’m out of ginkgo balboa), self-massage my legs, and sometimes hands when they let me (my feet are too painful for me to mess with), I’ve had a friend do Reiki for me, pet therapy (I heart my kitties!), and yoga (when I am able, which isn’t often).

12. If I had to choose between an invisible illness or visible I would choose: Invisible, as long as I get to get rid of my bipolar.

13. Regarding working and career: I went on disability in 2000.  I cannot work from my 
bipolarEDSC-PTSDepilepsy, and fibro.

14. People would be surprised to know:  How incredibly terrified I am so much of the time.  EDS scares the crap out of me.  I walk on a walker, and I’m only 30.  I can’t walk far on my walker, or for very long, either.  What does this mean for the rest of my life?  I’m planning on turning into a vampire (LOL!) or living to 110, whichever comes first.  Yeah, I know what you are thinking, I read too many vampire books. ;-p

15. The hardest thing to accept about my new reality has been: Not being about to walk very good or very far.  I bet I could deal with the constant pain better if it didn’t affect my mobility.

16. Something I never thought I could do with my illness that I did was: Go back to grad school.

17. The commercials about my illness: There aren’t any because EDS is a rare disease.

18. Something I really miss doing since I was diagnosed is: Jogging, walking, shopping, gardening (though I did have a small container garden this year!), wearing cute shoes, having less pain, picking up grocery bags, lifting the full pitcher of water without pain or subluxing my wrist, being able to move my head without pain, wearing a watch instead of wrist braces, being able to clean house all day, being able to go to the doctor in another town and not have to rest for two or three days afterwards from the trip.

19. It was really hard to have to give up:  A lot of my mobility.  Writing by hand.  Romantic walks with the hubby.

20. A new hobby I have taken up since my diagnosis is: 
Facebook.  I’ve met the most wonderful EDSers there that I have so much in common with, including Vanessa, Jennifer, Sam, and many more…  The same with Twitter.  I’ve met a lot of other EDSers on Twitter that have helped so much.  Thank the Goddess for Facebook and Twitter!

21. If I could have one day of feeling normal again I would:  Go hiking in my really cute boots.

22. My illness has taught me: Anyone may start needing ramps and handicapped entrances; even if you never thought it would ever apply to you.

23. Want to know a secret? I’m scared shitless.

24. But I love it when people: Open the door for me and my walker.  Have you ever tried to shuffle through a doorway on a walker while it closes on your bum?

25. My favorite motto, scripture, quote that gets me through tough times is: "Tomorrow's another day, and I'm thirsty anyway, so bring on the rain." ~JoDee Messina

26. When someone is diagnosed I’d like to tell them:  Get on Facebook!  The EDS community on FB is awesome and you’ll make friendship with people who know what you are going through, and you’ll learn things that you never would have learned otherwise.

27. Something that has surprised me about living with an illness is: A lot of people think I made up EDS.  I think I’m going to tattoo the address for EDNF to my forehead so they can look it up and see it’s real.

28. The nicest thing someone did for me when I wasn’t feeling well was: Other than DH…because he’d beat out anyone else…a little old man who was a door greeter in Wal-Mart helped me get a scooter when I came in.  When we were leaving, DH went out to get the car and put the groceries away.  The little old man helped me out of the scooter.  He told me that whatever was wrong he hopes that I get feeling better soon.  I told him that I have a degenerative genetic illness and he looked so genuinely sad that I almost cried.  Then he said something along the lines of “I hope things get easier for you.  God Bless.” 

29. I’m involved with 
Invisible Illness Week because: I want people to learn about EDS and I want people who have EDS to know they are never alone.

30. The fact that you read this list makes me feel: Happy!  Thank you for reading this post on EDS and Invisible Illness Awareness Week. 

Throughout the week I will be doing blogs on Ehlers-Danlos Syndrome for Invisible Illness Week.
So you don’t miss a single entry this Invisible Illness Awareness Week and if you haven’t already; I’d like to remind you to subscribe to my blog, through Google Friend Connect, Networked Blogs, RSS feed, or through email.


No comments:

Post a Comment

Comments? Questions? Please show class and respect in your comments. All comments are previewed, but anyone can comment. I welcome your comments!


Related Posts Plugin for WordPress, Blogger...