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.

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...

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.
 

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 made..it 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.  

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.

Which do you want..?

Good news or bad news first?

Tuesday I saw my GP and let me just say how lucky I am to have found her. 
She is as far as I can tell, wonderful, thorough and is thinking outside the box.

Good news - yes, it is in fact lupus. (duh) Still a struggle to get new doctors on board, you hear this Dr. House? 

Bad news - it's also possibly MS on top of lupus, fibro and RA. Not much a surprise, since these autoimmune monsters travel in packs. 

She's upped my lbp (little blue pill) which is Amitriptyline from 10 mgs to 25 mgs /night. She agreed with me that the other pills other doctors keep trying to push on me is too dangerous for me - namely the MTX and the plaquinel. There is a possibility she will put me on Celebrex, but she offered to try 3 ibprofins a day, however I do have an allergy or intolerance to it. So less of many evils perhaps.

The real heavy news now.

She has ordered new tests for me - Peripheral Arterial and Ankle Brachial Pressure tests, which I will have at the same centre that I had the radiation. 

The third test is the scary one - the DVT on both legs. This cannot be done at the same time as the other, and is actually urgent. The centre says that I have to call at 7:30 am everyday to see if they can take me  - however transportation is not so easy since I am so dependant on others, and they of course work. Public transportation is not an option.

This centre told me that if I can't get in,  to please go the the ER - asap. 
I have called my GP again and am waiting for anything she can advise me to do, with the many challenges that I have. 

Since I can't drive myself, I do not have my car anymore. It's so hard to depend on people, and I am so grateful for the time they do take off to help me. 

My feet do turn blue and go from blue grey to red with white spots. I know my blood is messed up - since I am not producing many of my own cells, and since I had the transfusion. 

There is something severe that is wrong, but this urgent, and telling me I have 48 hours to get tested, with the other voice at the end of the phone saying she begs me to to the ER asap, is scary. 

I'm very overwhelmed and sicker than even I thought. And that is not so good at all. 

Will try to update as I know things, currently just a waiting game right now. Waiting means thoughts in my head, and this also means I am beating myself up over it. 

Thank you for your wishes, thoughts and words. Every little bit means so much, and is treasured.

Today is an Anniversary...

One year ago last April was the start of my downturn.  One year ago today, was the start of my demise.

I woke up on the elevator floor, with a commotion around me. The elevator was open, and held on the ground floor. People were on the phone, and I heard sirens. That was an ambulance that was coming for me.

I remember getting dressed for work, I had a can of soup in my pocket of a new red jacket. I was feeling so weak, as I hadn't kept any food down since April, and still had my period. I got to the elevator, but don't recall getting in it. Thankfully I did, and my neighbours said I crumpled right away like an accordian. 

I woke up with the neighbour that I suppose caught me from behind, and luckily I didn't hit my head on the floor. My landlord was on the phone, and not sure what happened, but I do recall the feeling as I was going down. It was somewhat gentle, and just a 'I'm shutting down' as there was no fight in me to do anything otherwise. 

The paramedics came, and spoke to me in the elevator before trying to move me. They asked me the standard questions, what year is this, what day, my name. He picked me up, and convinced me to just check my vitals in the bus. My blood sugar was perfect, my blood pressure was okay, but still I was trying to convince them to let me go to work.


My landlord asked what she could do, and she called work to say I wasn't going in, as much as I kept trying to say I was fine, and had to go.  She was such an angel. I was able to call my mom, who made it to me in under 10 minutes.  I think she called my husband, but I'm not entirely sure. I was able to text friends, that helped tell our circle of friends for me what was happening.


I accepted that I wouldn't go to work, but wanted to go upstairs, and just sleep. They hooked me up to an EKG. I put up such a fight they called their EMT supervisor of the entire city. I'm not sure what made me give in, but they let me pick the hospital to go to. 


I was put right through triage, and in the ICU right away, no waiting for a bed at all. Hooked up to wires, and sounds and beeping and IVs, and I was so damn tired. And cold. The best part about this hospital is the warm blankets that were there, somehow my husband knew (his family works at this hospital which is why I chose to go there) and kept giving me new blankets once they got to room temperature. 


I had some visitors, but I was still in just curtains. I eventually was given some cheese and juice, which I think stayed down.


I was scared. I tried to make jokes and remain alert, but I am not sure if I slept at all. I do feel bad still that I kept mom and the man away from work, and that I had to have someone work for me. 


I was finally released, not sure after how many hours. Not even sure when I made it back to work, if it was a few days or a week. 


I know I should have stopped working in August. 


One good thing, I am so grateful for is that I blacked out at home, I wasn't driving. I can't even fathom that horror if I was behind the wheel and if I hurt somebody. 


I've been haunted by this day ever since. I made it - an entire year later, and I am very ill, and much has changed, but it could have been so much worse. 


I am thankful for the kindness of strangers, and I can't imagine if I blacked out inside the apartment, or in the hallway, where I was alone. Not sure what could have happened if someone wasn't there right away.


One year ago today, was the start of my demise. I continued to get much worse.


One year later, I am still here. 


It is still lupus awareness month, please help to get the word out. Thank you.