Invisible Illness Questionare

I found this on another POTS blog, and I thought it might be interesting to try:

1. The illness I live with is:

Postural Orthostatic Tachycardia Syndrome (POTS), Fibromyalgia, Allergies

2. I was diagnosed with it in the year: 

Fall 2010

3. But I had symptoms since:

Fall 2009

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

Leaving school and work. Dealing with the frustrations while I was getting a diagnosis and treatment under control. (which I have done!)

5. Many people assume:
That I am either "faking it" or that POTS is no big deal. Mostly this is because I only leave the house on really good days. POTS is a very real disorder that cannot be faked, there are ways of seeing what is going on through tests, which is how I got diagnosed. 

6.The hardest part about mornings:  

Actually getting out of bed takes a while. I work my way to an upright position slowly, which helps me to not have problems with my HR and BP. Also, taking a handful of pills is never pleasant. 

7. My favorite medical TV show is: 

Grey's Anatomy or House. I love the guilty pleasure of the soap like Grey's and I like trying to beat House to a diagnosis. 

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

My iPhone or MacBook Pro. Fun fact for POTSies, there are apps for tracking your BP and other symptoms. They come in very handy when its time for the doctor visits. 

9. The hardest part about nights: 

Usually by nighttime I am feeling at my best. I actually find it hard to go to sleep at night because I feel good and want to get stuff done. 

10. Each day I take: 

Florinef - for my BP and POTS

Midodrine - for my BP
Atenolol - for heartrate and POTS

Lunesta - to help me sleep

Zyrtec - for allergies

Paxil - for BP and migraines

Tramadol - for fibromyalgia as needed

Zofran - for nausea

Multivitamin, B complex, Vitamin C, Vitamin D, Calcium

2-3 liters water

32+ ounces gatorade

4000+ mg salt

11. Regarding alternative treatments:  

Vegetarian diet for BP, High salt diet, Huge liquid consumption, yoga/meditiation, tai chi (when my BP is high enough)

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

Visible if I would still look like myself. I know that sounds vain, maybe it is. I would rather be in a wheelchair and have people be understanding than have people think I make it up. It is incredibly frustrating when people don't understand.

13. Regarding working and career:  

I had to take a break for a while, but as of early November I am ready to go back to work part time. 

14. People would be surprised to know:  

That I'm sick. Most of the time when I am out of the house it is a good day and I feel almost normal, so most people I see don't suspect that anything is wrong. 

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

That I have limitations now. I've lived my life mostly without limits up to when I got sick, now I only have so many spoons and have to choose what to use them on. 

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

Dance at a wedding and go for a roadtrip. I took extra medication for both, took precautions, and paid the price afterwards to some extent, but I did it. 

17. The commercials about my illness: 

Don't exist. 

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

Working. I really loved my job and the people I worked with. I also miss going to school, I love to learn and to interact with classmates in class discussions. Also, I miss SCUBA diving, something I may never do again, and I was a Master Diver and Rescue Diver, so it was something I worked hard at. 

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

Caffeine and alcohol. Not that I need either, but I really enjoy a cup of mocha or a nice glass of white wine once in a while. Being in a bar with people drinking and not being able to drink sucks. As does walking past Starbucks. :(

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

Blogging! Also various arts and crafts like quilling and quilting. 

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

Go SCUBA diving or go on a day trip to NYC or DC. 

22. My illness has taught me:  

Who my friends are. 

23. Want to know a secret?  

I secretly wish I could write a book about my life. I've been around the world on a ship for 4 months, learned to SCUBA dive while living in the Caribbean for 2 months, lived in Spain, visited most of the 50 states. I've seen an erupting volcano, seen Presidents in office, mascoted for college and professional sports teams, lived outside at a camp for a summer, worked in a haunted prison. I've written an auto-ethnography, published an ethnographic film, and conducted sociological research on my own. I've raised $250,000 for Children's Miracle Network, $15,000 for Hurricane Katrina, and $5000 for American Cancer Society. I've done a lot of things in my life, I'm not going to let POTS stop me from continuing that trend, and I'd like to share that message with others.

24. I love it when people:

Try to help. Me or other people. Seeing people trying to do good for others is magical. 

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

"Now and then life doesn't seem to go the way you expect it to. Plans change, people change, dreams change. You change previous opinions of people, you take that step on the wild side which you never thought you’d take, you realize that being wrong about something isn’t always a bad thing, and every once in a while, you learn to surprise yourself. In fact, I've found that sometimes it’s the changes you never expected that you end up loving the most." 

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

You will get through this. You are strong. It could always be worse.

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

How misunderstood it is. 

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

Be there for me. Keep me company while I was in bed. Making me whatever food I could stomach. Helping me down the stairs so I could watch tv even though it was easier for me to stay upstairs in bed. Trying to help and be understanding.