Strong Butterfly

Today was the DVT test, woke up early and despite my fears and 'what-if's' and being awake in the real early morning, I wasn't even cranky.

Being super packed the night before helped, and of course my favourite red hoodie and matching flannel PJ pants, like hell was I going to wear real clothes out. Besides, my transfer chair is red too.  I tried my old hiphop shoes too, and being split soles, they were such a help. Didn't take the pain away, but I had more control and felt somewhat good (in comparison).


Checked in to the hospital 30 minutes before the test was scheduled, and as promised I bypassed triage completely.  I was then taken to the waiting area for the testing and imaging units, and I was grateful that it was small, and curtained areas. 


My tech nurse was quite nice, but she started by saying she couldn't do my tests. I felt my eyes start to well up and felt a bit of hopelessness come up. I asked her if we could do the DVT at all possible, because I didn't know what else to do. She agreed to that, but clarified the other two tests on the requisition were not able to be done there. Such a relief, as those tests are booked elsewhere on November 10th. 


I was decked out under my PJ's in some of my old dance clothes which helped so I could stay a bit warm and still not be in full undies, since I don't know how much is shown to the world. 


She gelled up my left groin first and asked me about pain, since she had to press quite hard with alot of force. I told her that I might cry and gripped the bed rail. I think I bit off most of my chapstick during the test.


The pain was tolerable till she got to my knees, and pushed hard underneath and with her hand pushed down on my kneecap, and followed the arteries down to my achillies. This was the toughest and searing pain on top of my already searing pain. 


Still no real tears.  She repeated the same on my right leg, I continued to bite my lip hard, grip the bed rail and tried as much as I could not to jump. 


The final part of the test was sitting up with my legs hanging off the edge, one hip more in front than the other. As soon as she was done, she helped me to get the gel off, and she said I did so great. I really appreciated that so much. 


She told me the results would be to my doctor in a week, and I took a huge breath. I have been terrified of the worst. She said quickly that there was no sign of any clots or PE. However, I'm not supposed to know this until I go to my doctor for the details. So nothing conclusive as to what it is, but at least one more thing that it isn't.


This is when the tears started. I was shaking, but not Oprah-Ugly-Cry.


Fell right into bed when I got home, and slept for a while, had a visitor and slept some more. I expect this will take days to get over, as my knees are now twisted and my muscles are screaming, and somehow my ribs feel even more popped out than usual.


I'm relieved, and this is over for now. The next major tests are still coming, and this will be another tough and longer ones.


Again, thank you for sending the love and support, and to my friends for updated and being my voice when I couldn't do it myself. 


Loves, here's to no clots. Time for a glass of wine, it is a blood thinner after all.

It’s not okay.

I made it through a week on my own, and I’m still kickin’. I was under strict orders to not use the stove, oven, toasters, heavy machinery, forklifts, knives, elevators.
I still ate, about twice a day and a snack if I felt like I needed it. I walked alot in the apartment, and even tried to make my 100 crunches a day. It’s a far cry from what I used to do, but right now, walking by myself for a few steps is a major accomplishment.

My feet are not great, continuously going from blue to red with white perfect spots. The spots are crawling up towards my knees. I am waiting on the results of the radiation, and before snow comes I have to make another appointment with the doctors. I am getting very tired of hearing ‘I don’t know’, or just the blank looks. I am broken and I need to be fixed. This is not new. It’s just getting very old and tired. It’s that daily fight, and yes sometimes, I want to sleep it away. I don’t see that as giving up, just needing a break. It is quite overwhelming.

October is Lupus Awareness Month in the United States. There are so many misconceptions about this disease, and it does affect everybody differently. I happen to be very bad. However, one such misconception that I heard on a talk radio show based in the States was that it all all diet. Yes, a good diet is good for everyone, and yes it helps. However, claiming – and yes – I am taking this personally right now – that I am sick and got sick because of weight and inactivity and poor food is utter bullshit. When I got sick, I was dancing and teaching everyday. By the way, the statement that ‘those who can’t do, teach’ is also utter bullshit. I ate very well, I was 130 lbs of solid muscle, I cooked for myself and worked everyday, a couple of jobs. I was damn good. So if nothing else, I am proof of this being bullshit. Lazy was not in my vocabulary or my repertoire.  So talk that I’m anorexic or lazy, and the like, is angering, sad, and it’s not okay. Yes I am tinier, yes I am so tired, yes I cannot do things that I could a simple as they are, but it’s so much more than that, and assumptions are not okay.

For this month, if you care to give anything, please help the awareness of this horrible disease. There are many that are horrible, which is why it is called dis-ease. As a very close and dear friend says, “sometimes sick JUST HAPPENS”.  Thank you for hearing me out. I know many listen, but still others don’t hear.
As an aside, thank you for your generosity in time, in thoughts, and pushing shiny buttons such as the one on the right. Thank you, it is more than I can express, and without you, I wouldn’t be here. 
I thank you for helping to make some parts okay.

My love to you.

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.

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.

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.

My OT visited again last week, and she is still wonderful. She wrote out for me at no charge the request for the Ministry of Transport Canada my disabled parking pass. In other words, my crip tags are ready to go. 


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.

The Crash.

Suddenly it's Wednesday. 

I got my wish. 

3 days last week I felt pretty okay, meaning I could do some things, like go out to the balcony, and open the door myself. It was glorious. I wrote that I looked alive.

This week is the crash. 

Saturday I reluctantly tried for sleep at 5 am.  By Monday, I had about 4-5 hours of sleep in the past 48. The crash is not unexpected but the intensity is.

Let me explain. On 'good' days, I can do a little bit more and I celebrate each like a victory. I still can't do much, pain is high, and I might be happy but that in no way does mean I feel normal. Not that I recall what that is like. My good days still mean I am bedridden. I spent Saturday and Sunday nights doing something I love, which is the podcasts - one I cohost and one I am an invited guest.

Monday, I fell. Not to the ground this time, but I was too ambitious, first time since I've been back I tried to use the toaster. I fell, into the counter and bounced back into the stove. I didn't cry right away, but it was a shock. Pain shot through me, ribs shifted, and my legs just gave out. I feel like a failure again.

The blackness takes over with no warning, and pushes me around. I can almost hear it taunting me, laughing.


The 'twitchies' are fairly new, and they are rather disgusting. I have no control, and it hurts. I'm just a glass little thing, and it keeps shattering me. I can't sleep. I lie awake, helpless. I've been in tears for days. Each twitch takes my breath away, and I cry a little bit harder. 


How in the hell do I of all people have no control of my body, it's what I am supposed to do. I twitch, I shatter, I cry.

Nothing but a silhouette of a dancer. 


I willed it to be Wednesday - I willed myself to sleep the days away, which I didn't do completely. 


Why Wednesday? I wanted two days of it to attack without my feeling it. I felt it all. But I did it. I made it. Somehow, I keep making it. Despite this hell, something keeps me holding on. The love and support far outweighs,  and it is that that I cannot thank you enough for. I am holding on.


I will watch my dance show tonight, and for a little while I will feel like that ballerina, even though a frozen in time one. 


I don't like to live in the past, but live in the now, and the near future. 

I'll just be one step behind you.







                                                      








 

I Smell Like Sunshine.

"My OT says..." My Occupational Therapist wants me to say this alot, to my doctors, to anyone that may be part of my health team. 

I have a health team now.

My mind might explode. 

She came back to see how I was with the new mobility aids, and truth, not so well. I dangle and fall off and into the toilet with the extender, (I should keep it just for the laughs) and my awesome pole in the living room helps so much, but I don't think I am out there enough still to justify the cost of it, so it will go back as well. 

She suggested exchanging the wheelchair for a transport chair. I love this idea. It's alot smaller, and lighter, (and much cheaper). It has 4 small wheels, and I will need the deepest one because I have long legs. 


I asked her if she knew anything that could help with the twitchies - they have been super worse than usual, almost non-stop this entire week. She had me apply heat above the impact points, and I don't want to say this outloud so whisper this - I haven't had much twitchies. I showed her the Voltaren gel from my GP, and she thought I could have it made at a chemist - happens to be one a couple of blocks from me. 


She wants me into the Pain Clinic - and again to tell my doctor that "My OT says I should go inpatient or outpatient - but to go".  


I asked her if there was anything I could do, since I was so active as a dancer, that I am afraid TLC will come here to do a special on me as the great bedridden 700 pound lady. She did laugh, and said I am far to petite to worry. She mentioned aqua classes, but she said she doesn't want me doing anything (I'm still so severe) except working on the sit-to-stand.  That is more than enough on this wee body.


She is coming back next week.


I used to be a sun worshipper. I know it isn't good for me and normally after 5 minutes I am nauseus and down for days. I made it to the balcony all by myself. It is far from my bed, and I packed a bag with my two phones, my new faery book (recent gift from a dear friend) and ipod. Opened the heavy door, and stepped out, shaking.


My intention for 10 minutes lasted almost 70. I am pink! I look alive. I am so happy. My book told me I am the Queen of Laughter. "She is always ready to leap joyously into a situation, and fluttering her wings as she lands in your soup, on your clean shirt or in your serious thoughts.She's out to have fun and she wants you to come with her....In Faery JOY is serious business...when you can't find your keys, stop for a moment, you will hear her laughter in your ear as she shakes your keys.." So you know I'm always going to be around, no matter what. Deal?



I smell like sunshine.

Today I woke up a few times, but wasn't ready to leave my dreams. I was dancing, I was cooking, I was playing and fighting badguys with light. I cured a man that was in a wheelchair. 

I walked again down the hall without holding on the wall. This is impossible and I can't quite believe it was happening. This doesn't happen to me! The pain yes, is there, it never ever goes away, but I want to open up, come out of this fetal position. I want to be strong. 

This number from So You Think You Can Dance hit home. I hold myself like this, my arm is often on my chest, I was falling - I dance in my dreams.

http://www.youtube.com/watch?v=UqzewHPisNw

My OT says she will help to fix me. 

I let myself cry

Since the blackouts started and I was on occasion found by neighbours, my building management put me on a high priority emergency plan. Again with those two words. This plan apparently has my information in the fire panel, and at the closest fire house in the building documents. I understand and appreciate it, however the lack of privacy is still hard to get over. 

Yesterday I woke to full fire alarms. I put on some other PJs, which I found hard enough to do. I tried to get to the front door to feel heat, at least put a towel down, but I couldn't get there, and I didn't push it, figuring they will put the plan in place if it was a real fire. If it was, nothing I can do myself.


The alarms stop, I get back to bed. I hear a train, then as it gets closer it sounds like the train blew up. There are no trains near me, nor up this high of course. The sky seems black through the crack of my blind.


The sound was sickening for some reason. I thought I was having another episode for the shaking. This all was within about 3 seconds, and the noise and the world is shaking. Hard. I am gripping my bed rail with all my might and the phone in the other hand. 


This was my second large earthquake (large enough to me) in 2 months. The first one was on Easter Sunday in San Diego - 7.2. This one was smaller, but was a 5.5 as the reports started coming in. 

We don't get earthquakes like this in this part of Canada, the Canadian Shield is not supposed to move like that. It was felt from Montreal Quebec to Windsor, Ontario with the epicenter one hour north from here. 

Minimal damage to things, a crack in the ceiling, and small things knocked over is all. 


I am beat up. Again. Thankful that I was in bed, if I tried to stand I would have many worse injuries I'm sure. 

My ribs and my back are screaming and parts of my back are disappearing when I try to stand. I feel as though I have shin splints. Of course the body is on fire. I have run a marathon, and the anxiety attack returns.

Turning on my front door lobby security channel, I see many people outside. A fleeting thought, I wonder if someone will come up to me, high priority and all. 


A day later, I'm still fighting the anxiousness, and the layers of extra pain on top of this usual everyday horribleness is hard. Breathing is something to concentrate on, and trying to control and go slow and steady so I'm not jarring anymore chest pains.  It's scary, but the pain is more frightening.


I cried.

Right this very moment

This is what my current episode feels like:

There is something pushing me through the ground.

My senses are hyper-aware.

And the pain. The pain has me in it's cold dirty grasp.

It is not letting go. 

Something is trying to control my limbs, and pull me away. 

So very heavy.

I am in bed, but it is raging. It is slamming my back.

 I am cognesant yet very cloudy.

This is the scary time.

My feet are past numb.  I try to stand, and they are gone. Yet I feel the   intense pain.  I have veins popping through my skin, my arms are in a tug of war.

My head is hard to hold up, it wants to swing if I look somewhere.

I am being thrown by my shoulders, pushed. I am drowning in air.

I try to breathe, in attempt to control something at all. My chest is screaming.

There are towels under my knees, a beautiful red wrap under my feet.

All efforts to control so I don't fly away, or be pushed and pulled down.

Anything.

This is happening to me. Right this moment.