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.
Thursday, September 16, 2010
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.
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.
Tuesday, August 31, 2010
I'm Glowing!
Nuclear Day was yesterday. Luckily I didn't have to go to the hospital this time, and it was overall as positive that a radiation day could be. At least in comparison of the last experience that I had.
I was injected first, and was my first ever injection lying down. For some reason that was significant to me, but I still couldn't watch it. I am okay with needles for the most part, but as long as I don't see it or know too much about what is exactly happening. There were some preliminary tests done right after as I was in the machine, but again, fairly okay.
I was released and to return a couple of hours later, so was able to go out in the sunshine (sort of) and get a quick bite and had to drink alot in the in between. In the end, took a bit of a long drive to see the river locks that we couldn't get to, a new bridge that wasn't built yet, all to pass the time. I felt loopy and a bit high at times.
Feeling very anxious about the next part once I got back to the centre, and they were late taking me in. Popped up on the bed, and I was then strapped in, by my feet and my arms.
The last time in the hospital, the bed was much bigger, I was strapped in from my forehead, forearms, wrists, hips and feet, with my arms in a trough on either side. The technician was nice but cold, and didn't communicate anything at all, and left the room during the entire time. The room was full of windows, and to the hallways also.
This time, my room was much smaller, more private, and the technicians stayed and talked to us the entire time. Once the 'business' talk got over, it was much laughter, many encouraging words as to how I was holding up, and what was going on. Also, once the machine moved past where I was strapped in, she undid them. It was a nice break.
Once it was done, I was dizzy, loopy, nauseus and that was okay. It wasn't horrible, just how I was feeling was awful. The actual procedure was what it was, not great, but much better than my first one.
Bedside manner, and making one feel like a normal person makes it so so much better. I've had my share of poor bedside manner, and these were truly angels.
Laughter really is something that is so important. If not a long-term best medicine, it is at the time.
I get sarcastic and quippy when I get nervous. It's very nice to have people can understand and put up with me.
Thank you everyone for the love and messaged, and for the lovely technicians all who helped to make a horrible day, tolerable.
I get to be nauseus which is okay, and the entertainment that I get to see what funky colours I will be peeing for a few days. ;)
Thank you. Much love.
I was injected first, and was my first ever injection lying down. For some reason that was significant to me, but I still couldn't watch it. I am okay with needles for the most part, but as long as I don't see it or know too much about what is exactly happening. There were some preliminary tests done right after as I was in the machine, but again, fairly okay.
I was released and to return a couple of hours later, so was able to go out in the sunshine (sort of) and get a quick bite and had to drink alot in the in between. In the end, took a bit of a long drive to see the river locks that we couldn't get to, a new bridge that wasn't built yet, all to pass the time. I felt loopy and a bit high at times.
Feeling very anxious about the next part once I got back to the centre, and they were late taking me in. Popped up on the bed, and I was then strapped in, by my feet and my arms.
The last time in the hospital, the bed was much bigger, I was strapped in from my forehead, forearms, wrists, hips and feet, with my arms in a trough on either side. The technician was nice but cold, and didn't communicate anything at all, and left the room during the entire time. The room was full of windows, and to the hallways also.
This time, my room was much smaller, more private, and the technicians stayed and talked to us the entire time. Once the 'business' talk got over, it was much laughter, many encouraging words as to how I was holding up, and what was going on. Also, once the machine moved past where I was strapped in, she undid them. It was a nice break.
Once it was done, I was dizzy, loopy, nauseus and that was okay. It wasn't horrible, just how I was feeling was awful. The actual procedure was what it was, not great, but much better than my first one.
Bedside manner, and making one feel like a normal person makes it so so much better. I've had my share of poor bedside manner, and these were truly angels.
Laughter really is something that is so important. If not a long-term best medicine, it is at the time.
I get sarcastic and quippy when I get nervous. It's very nice to have people can understand and put up with me.
Thank you everyone for the love and messaged, and for the lovely technicians all who helped to make a horrible day, tolerable.
I get to be nauseus which is okay, and the entertainment that I get to see what funky colours I will be peeing for a few days. ;)
Thank you. Much love.
Wednesday, August 25, 2010
Team Nuclear
Follow up specialist appointments are always scary. So when it is good news, I'm not sure how to take it, or if I am understanding correctly. I'm sure it's too good to be true.
Somehow, my blood levels are 'over normal' - just slightly but over twice the amount in December.
My organs look okay, and my other tests, the ANA's are the bitch. They are always so confusing, but also have two months of being slightly negative. Which is confusing.
I asked what was happening, and he didn't have an answer. I asked him about my feet - that besides the extreme pain - they go from blue to white to red with white spots. I asked him about the twitchies, and told him of the new suppliments I was taking and what or how much he reccommends.
He said "Well, you tell me then". Sigh. He did match my GP's recommendation of two LBP's at night, which I suppose is not so bad in the scheme of things - it's not chemo, and it's not other opiates.
This disease is one where you will never get a concrete answer, and a positive can be negative and a negative can be positive. It's a fucked up brat, that takes alot to fight it, physically but mentally also.
It's an invisible disease, which means double the fight. No scars, nothing tangible on the outside - just a body tired of trying to fight itself. He is very concerned with the fibromyalgia still. However, no real plan as of yet.
I'm going nuclear on Monday. I've had radiation two years ago, and I said I wouldn't want to do it again. Who am I to say no to the lupus specialist? It wasn't an option. My option was to go to the hospital or to a satellite centre - I chose the satellite centre.
I went to the hospital first, and that was when I was able to walk with pain, but I want a smaller place, a reasonable parking lot and it is staffed by hospital techs and nurses.
I have the experience so at the very least I know what to expect. I promise though, I won't tweet the funky colours that will be peed out eventually.
And if I have to take out my nose piercing, I will be pissed. ;)
This is a song that was shared by a dear friend, and is my theme of the week. http://www.youtube.com/watch?v=s87FG6AQQAw&feature=search
Thank you for pressing the shiny button on the right, and for sharing this blog. There are quite alot that it helps so much with, from parking, forms, to the day to day expenses that are required. That you think enough to share is humbling, and thoughtful and I thank you from the bottom of my toes. Thank you.
Somehow, my blood levels are 'over normal' - just slightly but over twice the amount in December.
My organs look okay, and my other tests, the ANA's are the bitch. They are always so confusing, but also have two months of being slightly negative. Which is confusing.
I asked what was happening, and he didn't have an answer. I asked him about my feet - that besides the extreme pain - they go from blue to white to red with white spots. I asked him about the twitchies, and told him of the new suppliments I was taking and what or how much he reccommends.
He said "Well, you tell me then". Sigh. He did match my GP's recommendation of two LBP's at night, which I suppose is not so bad in the scheme of things - it's not chemo, and it's not other opiates.
This disease is one where you will never get a concrete answer, and a positive can be negative and a negative can be positive. It's a fucked up brat, that takes alot to fight it, physically but mentally also.
It's an invisible disease, which means double the fight. No scars, nothing tangible on the outside - just a body tired of trying to fight itself. He is very concerned with the fibromyalgia still. However, no real plan as of yet.
I'm going nuclear on Monday. I've had radiation two years ago, and I said I wouldn't want to do it again. Who am I to say no to the lupus specialist? It wasn't an option. My option was to go to the hospital or to a satellite centre - I chose the satellite centre.
I went to the hospital first, and that was when I was able to walk with pain, but I want a smaller place, a reasonable parking lot and it is staffed by hospital techs and nurses.
I have the experience so at the very least I know what to expect. I promise though, I won't tweet the funky colours that will be peed out eventually.
And if I have to take out my nose piercing, I will be pissed. ;)
This is a song that was shared by a dear friend, and is my theme of the week. http://www.youtube.com/watch?v=s87FG6AQQAw&feature=search
Thank you for pressing the shiny button on the right, and for sharing this blog. There are quite alot that it helps so much with, from parking, forms, to the day to day expenses that are required. That you think enough to share is humbling, and thoughtful and I thank you from the bottom of my toes. Thank you.
Wednesday, August 18, 2010
Where did I go?
A bit ago tonight, I was in bed, watching So You Think You Can Dance Canada and somehow, I very quickly got very lost, and very confused.
It didn't last for long, but it was frightening enough. My pain is high, my sleep is messed, nothing new here, just the intensity. I've been twitchy and been fighting an anxiety attack for hours.
I've had a migraine for a few days, again, nothing new, but I got lost. I got lost, in my own bed. I was told that I just disappeared, and I remember hearing 'where did you go'. I don't know where I went.
I don't know.
Last August, I started my downturn. This was the time where I had chemical burns on my both my hands from the topical analgesic. I was still not eating, and iron was very low.
Standing at the wedding, I started to feel like I was going to pass out, I thought it was the sun - as I haven't been in the sun much at all since I got diagnosed. It was all the strength I could do to stay up, like hell, was I going to pass out at the wedding. Like hell.
That was the first notice something started going very very wrong.
I was too damn strong. I started the black outs, and usually I was caught. I had to walk down 10 flights of stairs one day, on my way to work, this is the first time I was found by my neighbours. I went back to the apartment, begged them to not call the paramedics.
The blackouts continued. I couldn't park at work in the parking lot, or in the driveway, I had to park outside on the street. I often couldn't get out of the car right away, and fought blacking out right out front of the doors.
I was living off freezies to at least keep myself hydrated.
October 23rd, 2009 I blacked out again, in the elevator at home. Luckily there were two neighbours with me, and woke up to being on the ground, on the ground floor, with people around and the paramedics. They brought me into the bus, and again, begged them not to take me to the ER. I lost that fight, and was in the ER shortly after.
Since then, they got increasingly worse, and more frequent. I am so very very lucky that nothing happened when I was driving. I kept pushing, too hard to keep normal, working, running errands - luckily for me - strangers were very kind to me. Almost everyday that I was out on my own, I suppose I was so visibly in distress that strangers stopped to help me.
Losing where I was for a bit tonight was enough of a scare. It doesn't feel like a black out, it feels like I dissapeared. Nothing tangible.
I need to sleep. I want to sleep, for a while.
I love August, but I am terrified.
I'm fighting everyday, even though I want to sleep for a few days at once. This is not me. I don't know where I went.
I'm so tired.
Of so much.
I'm getting afraid.
Of so much.
It didn't last for long, but it was frightening enough. My pain is high, my sleep is messed, nothing new here, just the intensity. I've been twitchy and been fighting an anxiety attack for hours.
I've had a migraine for a few days, again, nothing new, but I got lost. I got lost, in my own bed. I was told that I just disappeared, and I remember hearing 'where did you go'. I don't know where I went.
I don't know.
Last August, I started my downturn. This was the time where I had chemical burns on my both my hands from the topical analgesic. I was still not eating, and iron was very low.
Standing at the wedding, I started to feel like I was going to pass out, I thought it was the sun - as I haven't been in the sun much at all since I got diagnosed. It was all the strength I could do to stay up, like hell, was I going to pass out at the wedding. Like hell.
That was the first notice something started going very very wrong.
I was too damn strong. I started the black outs, and usually I was caught. I had to walk down 10 flights of stairs one day, on my way to work, this is the first time I was found by my neighbours. I went back to the apartment, begged them to not call the paramedics.
The blackouts continued. I couldn't park at work in the parking lot, or in the driveway, I had to park outside on the street. I often couldn't get out of the car right away, and fought blacking out right out front of the doors.
I was living off freezies to at least keep myself hydrated.
October 23rd, 2009 I blacked out again, in the elevator at home. Luckily there were two neighbours with me, and woke up to being on the ground, on the ground floor, with people around and the paramedics. They brought me into the bus, and again, begged them not to take me to the ER. I lost that fight, and was in the ER shortly after.
Since then, they got increasingly worse, and more frequent. I am so very very lucky that nothing happened when I was driving. I kept pushing, too hard to keep normal, working, running errands - luckily for me - strangers were very kind to me. Almost everyday that I was out on my own, I suppose I was so visibly in distress that strangers stopped to help me.
Losing where I was for a bit tonight was enough of a scare. It doesn't feel like a black out, it feels like I dissapeared. Nothing tangible.
I need to sleep. I want to sleep, for a while.
I love August, but I am terrified.
I'm fighting everyday, even though I want to sleep for a few days at once. This is not me. I don't know where I went.
I'm so tired.
Of so much.
I'm getting afraid.
Of so much.
Saturday, August 14, 2010
August 14th.
One year ago today I had the pleasure of witnessing two of my dearest friends seal their love in the most beautiful handfasting ceremony.
I was touched to be asked to stand as Maid of Honour for Kata, as our friend Rick stood for Will as his Best Man.
This day was perfect, it was gentle, and peaceful - beautiful and calm, and seeing Kata and Will and surrounded by their family - and seeing more friends who have became my family over the past years was magical.
My husband had other weddings that weekend, but I was luckily enough that we made the drive to make it - because in reality come hell or highwater I was not going to miss this day.
This day is also shared by more dearest friends, my friends - Daniel and Victoria who opened their home to me in California, and took care of me while I couldn't be in Canada. To share your anniversary is a most giving gift.
Something so beautiful to see people I love more than my life, share their love on the same day.
Today also holds a bit of an anniversary for me, as a day where things started the quick downslide of my health.
I though, am the lucky one. I stood for Kata and Will, as I knew them perhaps slightly before they knew each other. I saw their story start, and evolve, as it will all continue to do so.
Kata and Will - congratulations, the gift you gave me of being a part of your lives and your wedding is one of the most beautiful ones I have ever had, I treasure you as I treasure you today.
Daniel and Victoria, congratulations, the gift you gave me of opening your hearts and your home to me is one of the most beautiful ones I have ever had, and I will always treasure you.
I thank you - for being you, for including me in your lives. I will always and forever hold you all close to me.
Thank you for standing with me.
Thank you all that support and read my story, you also are standing with me, and you are giving me the strength to wake up the next day, and the next.
August 14th, is a day that is very special for me, forever.
I was touched to be asked to stand as Maid of Honour for Kata, as our friend Rick stood for Will as his Best Man.
This day was perfect, it was gentle, and peaceful - beautiful and calm, and seeing Kata and Will and surrounded by their family - and seeing more friends who have became my family over the past years was magical.
My husband had other weddings that weekend, but I was luckily enough that we made the drive to make it - because in reality come hell or highwater I was not going to miss this day.
This day is also shared by more dearest friends, my friends - Daniel and Victoria who opened their home to me in California, and took care of me while I couldn't be in Canada. To share your anniversary is a most giving gift.
Something so beautiful to see people I love more than my life, share their love on the same day.
Today also holds a bit of an anniversary for me, as a day where things started the quick downslide of my health.
I though, am the lucky one. I stood for Kata and Will, as I knew them perhaps slightly before they knew each other. I saw their story start, and evolve, as it will all continue to do so.
Kata and Will - congratulations, the gift you gave me of being a part of your lives and your wedding is one of the most beautiful ones I have ever had, I treasure you as I treasure you today.
Daniel and Victoria, congratulations, the gift you gave me of opening your hearts and your home to me is one of the most beautiful ones I have ever had, and I will always treasure you.
I thank you - for being you, for including me in your lives. I will always and forever hold you all close to me.
Thank you for standing with me.
Thank you all that support and read my story, you also are standing with me, and you are giving me the strength to wake up the next day, and the next.
August 14th, is a day that is very special for me, forever.
Thursday, August 12, 2010
Radio Chaos vs Radio Silence
Part of the allure of driving is the control you have over something that is so big, and powerful. Part of the fear of flying is that you are not driving.
I saw the new GP the next day, and more of my medical mystery indeed.
My mom took me to this appointment, and was her first time taking me anywhere by herself with me in the wheelchair.
I had no choice but to walk, out of my apartment, into the elevators, down the ramp to her car, as she pushed the empty chair.
Brave girl I am, I didn't shed a tear, but I wanted to. The power went out in the building due to a storm, and by law, I am still a certified first responder. It was very hard to suppress my instincts and my adrenaline, I was for the first time a bystander, even though in a power outage everything regarding the paramedics went as protocol.
What did we find out at this appointment? My levels are so wacked, they might be almost good. Except for the ANA, which is always the bugger. Once diagnosed, it remains as a little shit, playing tricks and again with the medical mystery.
My GP gave me 8 samples of Naprelan. I don't like it. It's an anti-inflam, which I said I would (despite my hesitations) take the full 8 pills for a week.
I've been waking up confused, and angry and in more intense pain, no rhyme nor predictablility to it.
The other morning, I woke up already in hysterics. This is not me. I am stronger than this shit. I was crying, and screaming, throwing whatever I could with whatever strength I physically had. It wasn't much, and I got even more hysterical. I wanted it to end.
I needed it to stop.
I was out of control.
I lined up some pill containers, and logically and slowly added up the total mgs. It was for no other reason but I had to stop this pain, this shit that is making me so very sick. I had to make some goodbyes first. I was far too logical amidst the hell and chaos I am in.
I fell asleep. I didn't touch one of the pills until my normal doses.
In my wanting to sleep forever, I slept for a few hours instead.
Not one used to not being in control, I suppose it was one thing I could control just then.
I pulled back, because I didn't know what or how to do anything else. I couldn't be the Rhi that I am usually - the one that loves everyone. Am I losing that quality also on top of everything else?
I had nothing to give.
Subscribe to:
Posts (Atom)