30 Questions time

Ok so been to my rheumy today, final word - 30mg prednisone to be tapered off to 10 mg by end of 6 weeks, methotrexate 5 mg (3times a week), folic acid, vitamin d, calcium tablets to boot.

Invisible illness week survey -

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW 

1. The illness I live with is: 
Dermatomyositis (DM). Optic Nerve Atrophy (ONA)

2. I was diagnosed with it in the year: 
Dermatomyositis - May 1997, Optic Nerve Atrophy Dec 2005

3. But I had symptoms since : 
Dermatomyositis - Jan/Feb 1997, Optic Nerve Atrophy - March 1997

4. The biggest adjustment I’ve had to make is: 
I was diagnosed when I was pretty young about 14. So during that time I would say not being able to do things that other teens would normally do. With Optic nerve atrophy, I would have liked to have my right eye-sight intact. Currently I can't see much with my right eye, not even letters at a distance of 1 meter. So the adjustment that I need to do is drive my car carefully and little slowly :) and maybe not be good at sports that I am still able to play inspite of DM like table tennis,etc.

5. Most people assume:
Most people assume I am their "regular run of the mill healthy" team lead and have no clue I suffer from such illness. I tend to be polite & soft spoken at work  and everyone consults me for their work. When I am sick, I just tell the co workers I am down with  fever/cold. Only my close friends at work know about my illness. Since I feel that people would somehow feel sympathetic / react differently if I tell them about my illness. So on a sick day, I sometimes have to answer 10-15 calls from work !

6. The hardest part about mornings are: 
Getting up and making coffee/tea. Most days I do not get 8 hours of sleep when I am working, which is tough to deal.

7. My favorite medical TV show is:
House MD (Huge fan of Hugh Laurie's sarcasm), Scrubs, also used to watch Doogie Howser when I was young.

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

9. The hardest part about nights are:
Not able to sleep early, end up sleeping at 2. Sometimes I am just bored or usually feel very tired after full days work/ traveling.

10. Each day I take __ pills & vitamins:
12 pills, not much of vitamins. Does kellogs corn flakes / oats count as vitamin ?

11. Regarding alternative treatments I:
I have been on homeopathy since 1997. Also in 1997 my situation was very bad (bed ridden, fed through gastro tube,etc) so my  aunt/mom used to practise "Reiki" on me. Over time, I learnt it and practise it for my eyes. Since ONA doesn't have a cure.

12. If I had to choose between an invisible illness or visible I would choose:
I think 100% people would say, I would rather not have a disease in first place. But if we dwell on it for a moment, it is a tough question to answer I guess. I am happy with what I have ! 

13. Regarding working and career:
It's been a long journey. I finished my graduation and then decided to take up a master's degree. Since the work opportunities for a graduate degree was like too much work and very less pay. During my final year of master's degree I got a chance to work in a MNC. I was appreciated by my managers there, but as luck would have it I did not clear their pre employment medical test. Ironically I had worked for 8 months there for the internship and was far efficient then most senior employees :) So after this debacle I joined another MNC. Life their was pretty much smooth sailing. Completed 2 years and left the company for challenging opportunities and better pay ! Then I joined my previous company where I worked my a$$ off for 1 1/2 years. I was leading a team and had got a big promotion this May. Ironically it was the same time I had a relapse with DM. Finally had to quit my job in August. So since September been taking rest at home. Hopefully should start working by october / november if everything goes as planned !

By the way, I work in IT in software quality assurance. I know I am going to go places sooner than later. As far as I see it, this illness can pull only to an extent after that it won't be able to hold anyone back. So say without the illness if I would have achieved my goals say in 5 years, it might take 1-2 years more. But will definitely meet them for sure ! That's a promise that I make to myself everyday !

14. People would be surprised to know:
About my illness, Dermatomyositis because I am really good at my work, I used to travel for 2-3 hours a day(have to stop that now) ! Also while traveling I sometimes run/sprint and jump to catch a train/bus sometimes ! (my doctor/mom would faint if they knew)
Optic nerve atrophy because I love to go on roadtrips and can drive for 10-12 hours at a stretch and am pretty good at sports like table tennis (which do not require lot of running).

15. The hardest thing to accept about my new reality has been:
Not able to go to work. I had a relapse since May 2012.

16. Something I never thought I could do with my illness that I did was:
Drink beer in Goa (and some other places) and also go dancing at a club !

17. The commercials about my illness:
I wish there was more awareness about my illness in India. Sadly no commercials so far. Also the name is not advertisement friendly I guess. Maybe "DM" would catch on ! Most people go like "derma......what ?"

18. Something I really miss doing since I was diagnosed is:
I don't miss much now, but at the time of diagnosis in 1997 when I was bed ridden, I always missed able to run on to a playground you know .. run like crazy !

19. It was really hard to have to give up:
Sports. Although I occassionaly play table tennis or some sport that doesn't require much running. Was a good sportsman before my diagnosis.

20. A new hobby I have taken up since my diagnosis is:
Reading, listening to music (specially rock). Don't do any writing but keeping a blog seems to be therapeutic !

21. If I could have one day of feeling normal again I would:
Go to Leh-Ladakh with friends !

22. My illness has taught me:
Patience, tolerance, Loads of will power, to be humble/soft spoken, be honest ! Phew the list is endless. I am who I am today only because of my illness. Would have been a very different person otherwise. It's not because of any spiritual experience or anything  that I had during my illness but just because I was 14 at that time. Whatever I learnt then,shaped my life ahead.

23. One thing people say that gets under my skin is:
No one has ever spoken about me(related to my illness) in a negative way in front of me. If some one has I might have dismissed it without any thought since in those cases they have no idea about my illness. However dishonesty is something which I strongly dislike.

24. But I love it when people:
Are honest, humble, open minded and fight for the cause of differently abled people.

25. My favorite motto, scripture, quote that gets me through tough times is:
"Tough times never last but tough people do". It's actually a book by Robert Schuller. To this day it sticks with me,I don't remember much about the book. But the book was read out to me page by page by my aunt when I was in hospital during the time of my  diagnosis. Most friends/relatives who would visit would shed a tear when they would see me. But my aunt would read out to me this book, newspaper or anthing that would keep my spirits high. So much so that I would always try to be humorous about my illness when some one would visit.

Even when I was lying in a bed, fed through a tube, not able to lift my hand/neck from bed, would occasionally choke on my saliva, was bandaged on my neck, legs due to skin/muscle biopsy and had bed sore ! I usually don't try to remember those times, but when I am feeling really down and no one is around to cheer me I just reassure myself with this quote and remember those times. 

26. When someone is diagnosed I’d like to tell them:
To research about the illness, to find a good doctor who has experience in dealing such illness, tell them my experiences.

27. Something that has surprised me about living with an illness is:
I think mommas quote in Forrest Gump - "Life was like a box of chocolates. You never know what you're gonna get." sums it up for me. Each day is a surprise - good or bad.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Everything that my family, relatives, friends have done for me is way above everything. I don't think I will ever be able to repay them !

29. I’m involved with Invisible Illness Week because:
Err I actually posted this after the Invisible Illness Week got over I think. But would love to spread the word around, definitely next year. This year was little unplanned and currenlty trying to live like a recluse for few weeks.

30. The fact that you read this list makes me feel:
That I should thank you !

Ciao n Peace.