Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

30 Things You May Not Know About My Invisible Illnesses

Written by Katie. Posted in Ehlers-Danlos Awareness, Invisible Illness, POTS Awareness, Questions

1. The hidden illness(es) I live with are:

  • Ehlers-Danlos Syndrome Type II
  • Dysautonomia-Postural Orthostatic Tachycardia Syndrome (POTS)

2. I was diagnosed with them in:

2010, within two weeks of each other, after months of being on a “doctor tour,” trying to figure out what was wrong with me.

3. But I had symptoms since:

My body fell apart in 2009, after I stopped running, thinking giving my body a rest was what I needed.  Little did I know that exercising was keeping my EDS and POTS from showing themselves.  Looking back, I had minor symptoms growing up like frequent injuries/dislocations while doing gymnastics and some gastrointestinal issues.

4. The biggest adjustment I’ve had to make is:

That I can do some things, but not everything.  I’ve had to move from full-time teaching to half-time teaching.  On bad days, I need to use a wheelchair and a handicap sticker.  That I only have so much energy in a day, and when it’s gone it’s gone.  That having EDS and POTS makes life unpredictable.  That I have had to learn to say no.

5. Most people assume:

I would not say most, but many people assume that I’m fine since I can exercise and on the outside I look okay.

6. The hardest part about mornings are:

Getting moving to get out the door when my body is begging me to move like a snail, feeling like I can’t function if I have insomnia (because of POTS) the night before, or waking up in pain because I subluxed something in my sleep.  However, most of the time mornings are the best time of the day for me.

7. My favorite medical TV show is:

I can’t watch them.  I get freaked out and then start to convince myself that I am either going to get the ailment on the show, or that I already have it.  I have learned to stay far, far away.

8. A gadget I couldn’t live without is:

My Laptop~for blogging, emailing, and staying connected with family and friends; especially when I am not feeling great.

9. The hardest part about nights are:

When I have insomnia.  It is the worst.

10. Each day I take 8-12 pills & vitamins.

I also try and drink 3 liters of water a day.

11. Regarding alternative treatments:

I have done acupuncture, meditation, chiropractic care, the Paleo diet, Gluten Free diet, massage therapy, B-12 shots, and aquatic therapy.  I currently see doctors for OMM and Prolotherapy.  I also see a physical therapist once a week and I am on a home rehab program.

12. If I had to choose between an invisible illness or visible illness I would choose:

If I am being honest, I don’t like this question.  I’ll take what I have, since it is what I know.  It is hard to say what I would rather have since I have learned to accept that I do not get to choose.

13. Regarding working and career:

I taught first grade and a multi-age pre-kindergarten/kindergarten full-time for 5 years before I became sick.  For what would have been my sixth year, I ended up having to take a full-year medical leave.  I returned for my seventh and eighth years, teaching half-time pre-kindergarten and kindergarten alongside a specialized assistant.

14. People would be surprised to know:

My defective collagen actually helped me become a high level gymnast.  I am always experiencing some kind of pain.  I have a life-long handicap sticker.

15. The hardest thing to accept about my new reality has been:

Planning for a family has been much more challenging than I ever anticipated; both mentally and physically…there are so many things to think about and take into account.  Also, the unpredictability of these diseases makes it hard to plan ahead (and I am a major planner)!

16. Something I never thought I could do with my illness that I did was:

Walk a 5k.  Work out with Dr. Lavallee.  Go back to work.  Dance all night.  Raise $12,500 at Life as a Zebra’s first benefit for EDNF, NDRF, and VF.

17. The commercials about my illness:

There aren’t any that I know of…Maybe I should try to make one :)

18. Something I really miss doing since I was diagnosed is:

Running races and living a full day without having to worry when I will “crash” and become sick.

19. It was really hard to have to give up:

Running.  Full-time teaching.  Control.  Living in a carefree way.

20. A new hobby I have taken up since my diagnosis is:

Writing.  Holding an annual benefit to raise money for research for the invisible illnesses my sister and I live with.  Beginning to move forward to make Life as a Zebra a non-profit organization that raises awareness and funds for invisible illnesses.

21. If I could have one day of feeling normal again I would:

Do something competitive like run a race.

22. My illness has taught me:

To slow down and pace myself.  To take each good day and live it to the fullest.  To appreciate the little things in life.  To laugh more.  To explore other talents that I would have never explored if I had not gotten sick.  That there are a lot of people out there who are just looking for a little hope.  To fall back on my faith and determination.  To foster the loving relationships I have in my life, because it is those relationships that have gotten me through my hardest days.  To be an advocate for myself, because if I’m not, no one will be.

23. Want to know a secret? One thing people say that gets under my skin is:

What gets under my skin is when people don’t take the time to understand, but then make flippant comments like, “Don’t worry, you will beat this and be cured,” or when people tell me, “But you are just too young to have these problems.”  I also become frustrated when I am told to “just push through,” because I have spent two years training myself on knowing when I can push through and when I must rest and recover.  However, I will say that most people who say these things are simply acting out of love and kindness.  They just need education!

24. But I love it when people:

Ask questions and really try to understand.

25. My favorite motto, scripture, quote that gets me through tough times is:

How much space do I have?  My two newest are:

1.  “Diseases can be our spiritual flat tires – disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way.”  ~Bernie S. Siegel

~and~

2.  “Awake. Alive. Blessed.”

These are my other faves:

  • In three words I can sum up everything I’ve learned about life. It goes on.” ~Robert Frost
  • If it is to be, it is up to me.”
  • “Be miserable. Or motivate yourself. Whatever has to be done, it’s always your choice.” ~Dyer
  • HOPE has two beautiful daughters:
    1) ANGER at the way things are.
    2) COURAGE to change them.
    (St. Augustine)
  • “When the road ahead seems long, look back to see how far you’ve come.”
  • “We must embrace pain and burn it as fuel for our journey.” ~Miyazawa

26. When someone is diagnosed I’d like to tell them:

When everything seems out of control, figure out what you can control and control the heck out of it.  Have faith that things will get better.  You must be your own advocate, and if things are not getting better, seek out other opinions, treatment options, doctors, etc.  There are always alternative options.

27. Something that has surprised me about living with an illness is:

Having EDS and POTS has made me so much more comfortable in my own skin, and has taught me a ton about who I am and who I want to be.  The support, kindness, and love I have received from family, friends, and complete strangers.  How strong I can be when being strong seems impossible.

28. The nicest thing someone did for me when I wasn’t feeling well was:

There is no way I can pick one thing.  All of the visits, emails, meals, songs, calls, gifts, packages, messages, flowers, texts, notes, outings, etc that I continue to receive on a regular basis from family, friends, and strangers near and far.  I could go on and on.  I am a lucky girl.

29. I’m involved with Invisible Illness Week because:

There are so many illnesses out there that people, even doctors, do not know about.  We must raise awareness if we are going to move forward with receiving better treatment plans, an overall better understanding, and hopefully even cures.  It is also important for me to express that even if someone looks great on the outside, that does not mean their body is not wreaking havoc on the inside.  Specifically, I also believe that there needs to be more education about EDS and POTS.  These diseases do not just affect joints and blood pressure like many people believe.  The whole body is made up of connective tissue and the Autonomic Nervous System pretty much regulates everything that goes in the body.  Therefore, it is important to me that people understand that EDS and POTS can affect the whole body.

30. The fact that you read this list makes me feel:

Grateful that you took the time.

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Comments (5)

  • annette

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    Beautifully written…thank you!

    Reply

  • Leland

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    I didn’t realize all of the things that your invisible illness entailed. Thank you for sharing. You are forever and Allstar!! :)

    Reply

  • Leland

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    *an Allstar!! Sorry );

    Reply

  • theresa

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    Love you friend. Thanks for sharing:) have a great week with your kiddos!

    Reply

  • Debby

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    Thank you for sharing. The comment you made about running a race reminded me of something that I thought today. I was on Sparkpeople.com, and somebody wrote something about running a 5k. My thought was I wish I could: I used to run several times a week. One time I ran 6 miles, and I was so proud of that. But now, I am happy when I am able to cook a good meal or clean house. I did all those things before too, but not the way I do it now.

    Reply

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