Chronically Awesome

It is very hard when you are in so much riddling pain to know what is something new and to get used to or to get it checked out.

You know that my life as a ballerina causes alot of injuries for the sheer nature of the career. 

I have sprained, broken, twisted, fractured many bones in my feet and legs, and somehow this week I woke up to not being able to walk. Again, but for different reasons.

My right side was out of commission, needing my chair in the apartment for the new pain. In my head I don't know if this needs to be looked at or if staying off it will work or at least help.

It feels like intense pain but with my entire leg doing a 180 turn on me with no warning, but I couldn't walk at all. Today is a smidge better but I still need help to walk and I can't use my chair on my own if I am sitting in it. 

I refuse to sit in the ER for 8 hours when there is nothing tangible they can do, I am not in an emergency situation, it's just I can barely walk. 

Oh yeah and I can't tolerate this layer of pain. I am like a a reverse onion, more layers and more layers to deal with but with no compromise.


There is no "hey buddy, I need to cause some hell, how bout you step off and take a break". It is another reminder that I am losing so much, and something else to get ready for, and try to get used to. 


Please be gentle with your #chronicallyawesome friends, and we need support alot even though it's not always said from us. 


Many diseases get the attention, however, still - lupus and fibro and RA etc don't get looked at all but it is so difficult to live with day to day.


Someone you love is sick but you can't see it.

Thank you for seeing it for me and for many of the people that are in my life and love.

Four Years In.

Four years ago today, my life stopped as I knew it. I was given the diagnosis, cried with my doctor, as he gave me 2-10 years to live.

When I was diagnosed, it was such devastation. Everything I worked so hard for. Done. 

Hearing words, and understanding them are different. There was no mistaking this. It was already very severe as it was attacking hard before we knew what was happening. 

I was to have a doctor's appointment today with the new doctor - ironically in the exact same office that I heard the news from the doctor that discovered it. He told me to go south, and just do what I could.

Funny how things turn out.

The pain never ends, it's complex with many layers of different pains all at once, everywhere. 

It is very hard to not be upset. I've done my grieving, and sometimes accepting, but it is still so hard to live with this every minute of everyday.

To those of you that have been with me every step, I can't say how much I love you enough, and I thank you. 

To those of you that I have met on similar journeys, I'm sorry you are dealing also. 

I'm not waterfalls and rainbows thinking positive will cure me. I am realistic. Pain-free will never happen. Pain-less, will not happen. 

I hope that I am the same person. This did not make me stronger. I have been strong my whole life. It's just me. I'm just sick. Very very sick.

Thank you for sticking by me and holding me up. 

Four years ago today changed my life. We will see what the next six bring.

New normal?

The elephants have been partying non-stop, playing shuffleboard on my chest with anvils, and as any good hardcore ravers, they have introduced electrical whips attacking my chest, feet, legs, and everywhere.

Monday was a scary day, and I've been mostly trying to stay calm and not allow panic attacks. I have felt legit in saying "What is happening now?". No, this isn't just a knee pain. This is severe all over pain in addition to the severe everyday pain. 

I am not used to it, but if this is what will become my new normal, I suppose I need to. I am not sure what to do or how to deal with the latest onslaught of attacks. 

Luckily I'm not dealing with it alone. I am still finding things to laugh about, although it hurts. I am a person that NEEDS to laugh and to feel somewhat normal sometimes. If I let myself think about this too much I will go into a dark place that I might not come out of.


Part of feeling normal and laughing and helps so much, is meeting people that are going through a similar hell.  Not that my friends and family aren't doing everything they can for me, and for that I am ultimately happy and thankful for, but to be in the same room (that isn't a hospital) with people that know what it is like, is remarkable.

I would never wish this hell on anyone, not even a worst enemy (and I have a couple). 

The thing about chronic illness is that it is chronic. I understand how hard that is to really grasp. It never will go away, I will never have a pain-free day, I will get worse and not better. I am not being alarmist, I am realistic. I need to be. Would I love to live with rose-coloured glasses, yes. 

I just take one day at a time, one moment different from the next and try to accept what is happening. With people by my side, it makes it that much easier.

All I have is my love to give.

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.