A Medical Meme!

Written by on October 20th, 2015 – 2 Comments


1. The illness I live with is: Neuromyelitis Optica (NMO)

2. I was diagnosed with it in the year: 2012 (previously mis-diagnosed with MS in 2007)

3. But I had symptoms since: I was 12 years old.

4. The biggest adjustment I’ve had to make is: Dealing with fatigue, a lack of sensation in my hands & bouts of severe pain at the base of my skull.

5. Most people assume: There’s nothing wrong with me. Apparently, I look fine, no matter how much pain I am in.

6. The hardest part about mornings are: Waking up feeling just as tired as when I went to bed.

7. My favorite medical TV show is: M*A*S*H is a staple in my house. I never get tired of it. I also enjoyed HOUSE, MD & Nurse Jackie.

8. Each day I take __ pills & vitamins: A giant handful as soon as I get up & again before I got to bed. I think it’s about 17 pills per day.

9. Regarding alternative treatments I: Fully support people’s right to choose what works for them. I think complementary and alternative therapies can be of benefit.

10. If I had to choose between an invisible illness or visible I would choose: Invisible-that way I get to decide who knows what.

11. People would be surprised to know: I also live with a hearing impairment, which I was born with. Unless I told you, it’s unlikely you would even notice. I can’t hear people walking up behind me and I have a hard time hearing in large crowds when everyone is talking. I am always looking at people’s faces when they speak because I am simultaneously listening, reading lips and observing body language.

12. The hardest thing to adjust to about my new reality has been: Having to slow down. I do a heck of alot on a daily basis, (by most people’s standards) but really, it’s only about half of what I want to accomplish.

13. Something I never thought I could do with my illness that I did was: Advocate. I have become very passionate about this.

14. Something I really miss doing since I was diagnosed is: Feeling my dog’s Indy’s fur when I pet him. (I have no feeling in my hands.) I didn’t realize how tactile I was until I lost that sense.

15. It was really hard to have to give up: Handwriting. (I have a hard time with small motor skills. I can do it if forced to, but it’s really hard and uncomfortable.)

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

17. My illness has taught me: Not to put things off that I dream of doing. I need to do as much as I can while I still have my mobility. It wasn’t so much a wakeup call as it was a call to action.

18. One thing people say that gets under my skin is: “I have (name of disease), but it doesn’t have me.” I loathe this saying.

19. But I love it when people: Make the effort to learn about NMO, whether that’s looking it up online or asking me about it.

20. Something that gets me through tough times is: Thinking about Canadian heroes Terry Fox & Rick Hansen and how they were both dealt tough hands, but made the decision to rise above illness and disability in order to make the world a better place. They used their experience for the greater good.

21. When someone is diagnosed I’d like to tell them: The first year is always the hardest, but you will adjust. It’s important to allow yourself to grieve and to seek out support. Don’t give up on yourself or allow anyone else to determine what you can and can’t do. Your disease does not define you. Your life after diagnosis can still be amazing.

22. Something that has surprised me about living with an illness is: How hard I have to advocate, usually in the moments when I am the sickest and least able to do it. Living with a rare disease that most medical professionals have never heard of is hard.

23. The nicest thing someone did for me when I wasn’t feeling well was: Send me goodies in the mail. I love good mail days. I also really appreciate it when someone picks up dinner or offers to cook.

24. One thing I hope for the future is: Better drugs to maintain quality of life while we are waiting for the cure. Having to do steroids to stop an attack is brutal. The side effects are miserable. We need better options.

25. Final thought: When you go through something like being diagnosed with a life-altering disease, you really find out who your friends are. One of the most amazing things in all of this has been the MS Society of Canada’s willingness to step up and support those with NMO and other allied diseases. By allowing me to have a voice here and in a host of other ways within the MS Society, federally, provincially and locally, they are helping to make NMO more visible. That means EVERYTHING.

Want to play along? Leave your meme answers in the comments!

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2 Responses

  1. Hana says:

    Better drugs to maintain quality of life. I believe it’s the common concern of most people.

    • Lelainia says:

      Indeed Hana. It’s especially tough for those with NMO because we are rare and therefore considered an orphan disease. Essentially what having an orphan disease means is that there are no drugs specifically developed to target our disease. Currently NMO Patients in Canada have two options: Imuran or CellCept both of which are immunosupressant drugs developed to help prevent organ rejection for kidney transplant patients. The only other drug treatment is Rituximab, which is hugely expensive and currently NOT covered in Canada, so it’s not an option for the vast majority of NMO Patients. That said, the Guthy Jackson Foundation has managed in just 6 short years to champion THREE drug trials for new drugs specific to NMO, which is virtually unheard of. The work they are doing on our behalf is amazing. That, coupled with the support of the MS Society of Canada means this is a very hopeful time for NMO patients.