Thursday, September 16, 2010

Truly the Best Medicine.

I met my 4 month old niece this week.  This visit was so very special. My mom and I had my cousin and her new baby come from Calgary. What was unintentional, but was amazing was that yesterday, my grandmother would have been 100 years old. I was lucky enough to share that day with women of 3 generations that I am so close to. We share a same sense of humour, (if you know me, imagine three of us in the same room), same eyes, same hands. It's amazingly special.

The baby and I got along very well, and she also seemed to have an instinct to be gentle with me, she had some strength in those wee legs, fingers and was wiggly, but as I was holding her, and we had some pretty good conversations, she was wonderful. I do believe in strong connections, no matter what age. As my psychic witch friend would be surprised to hear, the baby is a Taurus and I am a Sagittarius.

This was the first time I had seen my cousin since I became so ill. I know it was a shock - as it is with everybody that knew me before. What was so incredible, was she still saw me as me. I am a person with this, I am not the illness. It was no questions - or guilt, or anything such as, 'why can't you...why don't you...have you tried...', it was unconditional and love, like no time ever went by.

This is so valuable and special, and wonderful to me. I am very lucky, as much as people are and have faded away, I have caregivers - those are the ones that are checking in, that physically and literally hold me up, are there when I can't do anything on my own, but also there to watch and let me try to manage small things, and hold me when it is too much.

So to those that have been there, that are there, in your own ways, I thank you, and I love you. Thank you for making me laugh, letting me cry, letting me cry because I am upset about crying, feeding  and keeping me going with meds, and foods. Asking me the hard questions, I know is difficult and sometimes I don't know what to just say either. 

Come to me, ask me, because during this week - Invisible Illness Awareness Week, is a time that we need to get the awareness out to the masses. This is something so misunderstood, and often - people assume and won't come out of that. That is okay. It is hard to cope with, and hard to deal with. I understand. 

 Thank you for being there, for reaching out. It makes a world of difference, and it means the world to me.  With how much I have lost, I have gained so much. Thank you for making me laugh, and being 'okay' when I can't. 

Thank you, so so much. It is not for granted, but cherished. I thank you.

Really. THIS is the best medicine.

Thank you, and loves.

Tuesday, September 14, 2010

30 Things - Invisible Illness Week

 30 Things You May Not Know

1. The illnesses I live with are: Lupus, Rheumatoid Arthritis and Fibromyalgia
2. I was diagnosed with it in the year: Lupus - 2007, Fibromyalgia, 2008, RA - 1980
3. But I had symptoms since: Birth.
4. The biggest adjustment I’ve had to make is: Stopping working and what surrounds that on a dime.
5. Most people assume: That it can't be as serious as it is.
6. The hardest part about mornings are: Going to sleep. I do not wake up or keep 'normal people'  hours. 
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My laptop. It is my lifeline.
9. The hardest part about nights are: Getting to sleep. Nighttime is my time, I feel somewhat functional, at peace and happy. 

10. What do you take? I should take more than I do. It does vary per day. At least 10 pills/vitamins/day.
11. Regarding alternative treatments I: am very open to. I prefer the options of alternatives than to the 'big pharma'.
12. If I had to choose between an invisible illness or visible I would choose: Neither? Both have the severity and challenges to live with, sometimes overlapping each other.
13. Regarding working and career: I prided myself on my career, my work, my education and training that led me to do what I chose to do with the opportunities that I had.
14. People would be surprised to know: I am very scared and I get angry.
15. The hardest thing to accept about my new reality has been: The struggle to find medical professionals that I trust, that I feel my care is taken seriously and the length of time - years this has been.
16. Something I never thought I could do with my illness that I did was:  Fight to come back when I was at the zero hour.
17. The commercials about my illness: Are a joke. If I feel suddenly well enough to get on my knees I sure as hell am not going to start a garden.
18. Something I really miss doing since I was diagnosed is: Dance, teaching.
19. It was really hard to have to give up: Driving.
20. A new hobby I have taken up since my diagnosis is: Writing this blog!
21. If I could have one day of feeling normal again I would: Throw a party and dance on the speakers. And noone will stop me, but including everyone to dance with me.
22. My illness has taught me:  Accepting loss.of independence does not mean a loss of self.
23. Want to know a secret? One thing people say that gets under my skin is: "What is wrong NOW, you LOOK fine". (Said to me when I was first in the wheelchair)
24. But I love it when people: Include me, help me with the little things, make me laugh, accept me for me.
25. My favorite motto, scripture, quote that gets me through tough times is: "She's home now, She's gone far beyond that song, Rock and Roll Ballerina, where else would she go" - Rock a Little - Stevie Nicks
26. When someone is diagnosed I’d like to tell them: It's going to take a long time, new hells will happen. be your own advocate, stand strong with doctors.
27. Something that has surprised me about living with an illness is: The support from people that have stuck with me thick and thin.
28. The nicest thing someone did for me when I wasn’t feeling well was: I have been so ill where I could not do ANYTHING for myself, and to help, no questions asked, and no guilt.
29. I’m involved with Invisible Illness Week because: AWARENESS is needed for these illnesses that are severe, take lives, and take our lives as we watch it happen. We need our voices in the sea of many illness because these are so misunderstood.
30. The fact that you read this list makes me feel: Like it's okay to talk about, that I am still me, not defined by the illnesses, nor the limitations.

Thank you for supporting and taking the time. It is much appreciated and loved. 

Thank you, so so much.