Monday, November 29, 2010

New Year

Thank you for the amazing birthday messages. I'm the luckiest girl in the world. 

This birthday is very important to me. Not just because it is a special day, but it is a very mind blowing one.

When I was little, I never thought I would make it out of 36. I have no idea why or where this possibly started, but I was convinced that at this age I wouldn't get past.

It's now 3 hours past, and I am 37. I made it. 

I thought many times this past year my prophecy would ring true. In the hospital last Christmas, I thought that was it, made my peace and was ready to face the end, if that is what would take me.

Somehow, I fought. I don't know how I do this, but I just do.

This birthday is epic. I made it. 

I thank you all for helping me fight, I surely wouldn't be here otherwise. This is know is true. 

I've been terrified, which doesn't mean giving up or giving in. It means that I am just a person. 

Everything, as little as it is, is a new accomplishment. This year, I do feel as if I was having to relearn how to do anything - eat, breathe, walk the little that I do, fight for what is right and what I won't put up with.

I might be coming back to me. 

I thank you for the love, the support, treating me for who I am, not what I was, and feeling sorry, or leaving me. People I loved have left me, and that is okay. Perhaps I should come with a warning label now.

Love me or leave me. Thank you for loving me. This birthday is more than a birthday.

I made it.

Friday, November 26, 2010

Getting Stronger, Inside and Out

A week ago I was able to start physio.  This has been possibly the best breakthrough I have had to date.

I first met my physiotherapist when I first got back, and there was nothing he could do for me, as I had no strength to stand, let alone open the fridge door, turn on faucets, and barely lift the toilet seat lid.

I've gained some weight, I can function very very very basically on my own, just at home except for cooking, yet opening my front door is still a bit of a challenge. Once I leave the apartment, I need help with everything.

My PT started with some basic stretches, and he remarked at how flexible I still am, despite the pain. He started me on a plan, with reps and to progress and increase them. I exceeded this on the first day. 

I have been doing these, with increasing reps - and adding resistance and including some core work - just abdominals so far. Every day, and part of my exercise is to bring my laptop to the living room, where I can  do my physio on the couch. 

Yesterday was my second visit, as he will be seeing me every week. He was again pleased with my progress, and with my ab work, and gave the okay to continue, I am attempting to increase this by 25 each day. He even said that I could gain 20 more pounds and be perfectly in range.

The other day, I noticed my hip popped out, not a dislocation, as I'd be screaming, no doubt, but it does hurt and my knees are out of alignment, starting from my hip. It is burning and sharp, but in comparison to my usual pain, it's nothing really.  I have a twisted wrist, but that is from just trying to sit up in bed, not physio related.

My new section is to increase what I have, and including strengthening and adding core now, even for my back, but I can still do that lying prone, as I can't lie on my front at all still. 

It is hard not to compare what I used to be able to do as a dancer, but if I think and compare from day to day, I am thrilled with how I am doing. It feels so good to move, and it is still limited, but I'm happy that I am able to lie down, pull one leg up, and my knee comes to my nose, like a reverse split. That is a different pain - and one that is welcome.

This is so exciting. I finally feel like I am accomplishing something real, even though to normal people it is probably nothing. I have something to look forward to everyday, and everyday I am feeling myself change. 

I even can walk down my hallway without needing to hold on to the wall half the time. I still need all the aids from my Occupational Therapist in the apartment, and I still can't stand in the shower, or cook, but it's the little things, that are really most important now.

Yes I have lost so much of my life, and this is new life as I know it. And for this, I am thankful of the support and I am proud that I still have that drive that I used to. 

Perhaps I really am still a fighter...

Wednesday, November 17, 2010

Love Beats Hate

Love and hate are powerful things. Seems like those that hate, get ahead. I don't understand why bad things happen to good people and the haters keep going. 

It's too bad we need a 'day' to express why love beats hate, but it is important to remember why love is better.

Most people want to love and be love. I cannot fathom those that live and thrive on negativity, especially over the small things. Stupid drivers, stupid people working at drive throughs, stupid machine made coffee too hot, and on and on.

I've always been the 'nice' girl. While I don't have long left here, it is becoming more apparent that I will not put up with hate. I am usually patient and put up with alot, but I can't give in and be nice to hate. Cheesy yes, but life is too short to live that way.

The kindness and love that I surround myself with, surprises me everyday. I will not tolerate anything less. Hate tends to make the world go round. 

It needs to be love. We all can learn to live with love and kindness, don't hate the haters, just don't play the game.

Love not just for today, but for always. Reach out a little more, let this jaded world be, and embrace love. 

Love beats hate, lets keep it going. Who's with me?

Thank you to those that have reached out to me, loved me sickness and health. 

Really does mean the world. 

Love love love.

Wednesday, November 10, 2010

The HorribleNoGoodVeryBad Tests

When nurses, techs, doctors are honest when things could be hard, I much appreciate it. I would much rather honesty then sugar coating.

As was the case with today's tests. I woke up at stupid o'thirty and went in for Arterial Brachial Pressure and Peripheral Arterial, the second part to last week's DVT. I knew from research and talking to medical professionals this would be a tough day.

I wore the super-fly paper dress, and again, remembered real underwear. My technician was a bit brisk, but she became very kind and explained everything as we went. She told me it was tough, and will take over an hour. 

She started by putting blood pressure cuffs on my arms and legs, and attached a mic and wand to each cuff, and started the tests, lots of squeezing and pressure, and release, repeat. The machine recording the the test was so loud, and quite disconcerting. And it hurt. I try to think I am strong, but when air hurts on a good day, this sent me flying. I concentrated on trying to breathe properly, and let her do what she needed to do.

She took off the cuffs once she asked me if I prefered, normally they keep the cuffs on the entire time, but I was thankful that she took them all off for the remainder of the time. Similar to the DVT tests, she followed my arteries from my groin all the way to my calfs, searching for my arteries and anything abnormal. This hurt. The pushing by my knees and on down was very tough. When the machine stopped making noises, I tried to not worry what that meant, as the bed was raised and lowered the entire time. She had trouble finding my lower arteries, but she said that was because I was so tiny, so everything was tiny. She just said that was how I was was kind of endearing when she smiled at me so warmly.

With a towel she helped me get the gel off, and to sit up. I was terribly dizzy. Good news is there are no evidence of clots, however the possibility is that my arteries and veins are seizing. She also mentioned the potential of MS on top. I needed help to get dressed, and home to sleep. 

I am currently in so much more pain, than the usual horrible. I need help with everything. This is my body in some kind of shock after being in some kind of trauma. 

This may take weeks to get over. Thank you everyone that sent me love and well wishes today, it helped to try to stay strong to get through it all. 

Someone you love and know has lupus, and it is made better by love and support, to get through every day.  

Monday, November 1, 2010

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.