Monday, December 20, 2010

Christmas has always been magical my whole life. There is something peaceful and joyous about the time, special and happy. It's not about gifts, but it's about the time, basking in the lights of the tree, the music - the more rediculous and fun the better and Christmas Eve is my favourite over Christmas Day, possibly because that means it's almost over. Yes, I have mistletoe tattooed as a tramp stamp. I had to do that.

This year means so much more to me. 

Last Christmas I don't remember at all. I do remember that I couldn't do anything for myself, I had to stop working so suddenly. It has been a year since I've worked, gone grocery shopping, checked my mail, cooked, drove my car. It was a very scary time. I remember feelings, but not events. If I think about it too much it really is very surreal.

I was not expected to make it, let alone to make it now, a full year later. My PT also didn't think I could make it when he first met me.

I've had to relearn how to do so much, eat, swallow, hold things, and there are still so much that I cannot do. I still can't drive, work, check my mail, but I can eat once or twice a day, I am continuing to adapt and learn how to adjust to do everything and everything. I am slowly getting stronger. 


I'm not sure how I did this, how I came back to life, how I continue to fight, yes, I can't do much of anything, and the constant insane pain never goes away - but somehow, I keep waking up despite it all.


My love and sincere thank you goes out to my family that is taking such good care of me, and my friends south that take care of me for the winter. You have brought me back, you have made it be 'okay' even though I am so so sick. And a thank you to all my friends that are in my life everyday, make me laugh, be silly and have reason to not wilt away. Thank you for the donations, honestly that has been helping pay for what I can't manage to do medically. 


As tough as this is, and it is daily hell, I have so much to be thankful for.  Thank you all for being there, and making light out of the darkness. 


I have no idea what will happen, but I hope as I continue to get stronger, and continue to keep fighting to stick around this joint as long as possible. I don't wish my past year on anyone. 


I'm here to make new memories to make up for the scary ones last year.


Merry Christmas and happy holidays know matter what this season means to you. It means love to me.

 

Sunday, December 12, 2010

I'm Broken, Yet Still Me.

In the same topic as yesterday's post, the following are points that are helpful for those of us dealing with chronic illness. The points are sourced by Author Unknown, but I have seen it on many sites. I have decided to add my own points under, as I have in the previous post. As always, comments and thoughts are welcome. All I know is my experience.

1.   Remember that being sick doesn't mean that person is not still a human being.
This I do struggle with often. I am so dependent on others that it is hard to think that I have an opinion, and I am guilty of not treating myself as someone that matters. Being out in the chair, people look at me, and I am still working on what kind of etiquette I am comfortable with. I appreciate being spoken to, but please try not to help by grabbing the chair unless you ask, it's just so much pain. Because I am in a chair doesn't equate to having no feeling in my body, it's quite the opposite. I do still have a working mind - usually - and yes sometimes I have to say "I need you to think for me". I'm still me even though I am broken.

2.  Recognize the difference between "happy" and "healthy".
As mentioned in the last post, I'm not healthy, but I make efforts to try to do things, that make me happy. Laughing, music, friends, people that I care about and really care about me, that know me for me, and not just my illness. Many people I have lost, but others I am close to only have known me ill, but I'm still able to be happy. It doesn't take the pain away, but it helps my soul.  
  
3.  Understand that being able to stand up for ten minutes doesn't necessarily mean they can stand up for twenty minutes, or an hour.
This is something that was very hard to grasp. I was frustrated at being able to do something, then not. I cannot stand for 10 minutes consistently, and if I walk without holding onto the wall once, that is about my limit. I can stretch one day, but not after. Sometimes I have to sit while I brush my teeth, sometimes I have a hard time holding the toothbrush. There is no predictions to this, and it does require patience, including from myself. Sometimes I have forgotten how to turn on the car, others I couldn't figure out how to open the door. It's cruel, but it happens. 

 4.  Repeat the above step substituting, "sitting", "walking", "thinking", "concentrating",  "being sociable" and so on, it applies to everything.

 5. Realize that chronic pain is variable

6.  Know that "getting out and doing things" does not make the pain vanish and can often make it seriously worse.
Sadly true. However it helps my soul. I love when people offer to come over, it helps me be home, and is so kind for people to ask to come visit, or to help out a little bit. I love love love going out, but it's just not possible without a to-do. Going out other than to a doctor's or a hospital is wonderful and I love it, but also I have a fear or placing more burdens on people and it is taxing on the body. Luckily I have time that I have to to spend back home, in bed. It's a fine line and again hard to not just be able to go out, forget doing things.   

7. Understand that if they say they have to sit down, lie down, stay in bed, or take these pills now, that probably means that they do have to do it right now, it can't be put off or forgotten just because they happen to be somewhere, or they're right in the middle of doing something.
 When I hit the wall, I hit it hard. I get no warning, no migraine-like auras, it's horrible, then BOOM. Shutting down happens and I'm done. I tend to try to push it, and I know I shouldn't.

8. Don't suggest cures. I do appreciate the suggestions, but often I have done research and if I could try something I would. Usually if I haven't, there is already a reason in place, due to costs, side-effects, and I cannot take standard pharma meds. I have alot of limitations. Sure, if I could take 42 pills a day and manage 'fine', yes I probably would do so. There is a reason, please ask if I have heard of something, like the new 'miracle' Benlysta, but again, there is a reason why I can't. I'm not just being difficult.

9. Don't be put off if they seem touchy.
Pain hurts. Imagine how you feel with a headache or a flu, miserable right? I am not comparing my everyday pain to a headache or a flu, but it's the closest thing I can try to compare to. Sick, pain, miserable, frustrated...it's all serious. I do try to mask it, not bitch about it, the fact is - I am in a very severe part of the sickness, it's quite alot more advanced and happened very fast with me. Sometimes I can't get enough snuggling, sometimes, the slightest touch sends me to screaming and tears. I have no way of knowing. It just hurts - all the time. There is zero break, and zero times do I ever be pain free.

10. Be helpful.
And thank you for that. As I've said, I need help with very simple things. I want to do everything for myself, but I can't. It's very humbling and a loss of alot of dignity. Thank you for being patient and helpful, I cannot do the big deals like taking myself to the doctor. Any little bits of help, and that includes asking how I am REALLY doing, if you don't want to hear, don't ask. I am not one to bitch about it much. Yes it's overwhelming, and I want to help you, I want to help you as I used to do. I want to be independent, and more than anything, I don't want to leave it to others. I just can't.

Thank you as always, for reading, sharing and I hope there might be some gems in here to help. I'm still me, I'm just broken. It is hard to stay positive, I try my best. Feel free to ask me anything, it is a very hard and confusing struggle for everyone involved. Thank you for taking care, and being still kind to me. It helps me stay strong and try to fight.

Saturday, December 11, 2010

11 Thoughts

 This flu is kicking my ass this month. I have been thinking alot about words or phrases that I find very hard to hear, and compiled a small list that are from some other chronicillness.com, bydls.com, thelupussite.com and to see if it's just me being dealing with extra epic pain, and all the troubles that comes with having a flu when you are immunocompromised. Perhaps you will agree, or you will have other ones that you hear that you wish to share in comments. I'm very blunt, so a warning if it is read harsh, I don't mean it to come across that way.

11. You’re never given more than you can handle.
Then I am one damn strong woman. That is like saying things happen for a reason, that there is something that I did to piss off the universe that much to be a good person, working very hard when I shouldn't and I'm even the kind of person that blocked traffic so a family of ducks could cross the road. Oh but I'm sick now because of some vendetta someone had against me so I deserve it.

10. You can’t be in that much pain.
My auto response to this is, 'how do you know how much pain I am in. Since when is this a competition? 

9. Stop being lazy and get a job.
I'd love to, do you have the magical cure so I can? It makes me truly sick to see people work the system. This is why there are so many hoops to jump now for those of us legitimately ill. I've worked many jobs at once, and usually 6-7 days a week most of my life since I was 14. I took pride in my education both physically and academically, and by the way, no I am not on social assistance of any kind now, I have zero income and not on government support. 

8. You just want attention.
And you want to be an asshole. Think about this, why would anyone wish this kind of life for themselves? To be in severe pain where nothing works, life every minute is a struggle. If I want attention I will paint myself blue and stand on a street corner downtown. 

7. Your illness is caused by stress.
It is possible and probable that it was triggered by some kind of trauma, but we don't know. Thank you very much but I'm not going to be cured by rainbows and unicorns and waterfalls as much as they are pretty. Don't get me wrong, my purple unicorn pillow is very comforting, but I can't meditate the sickness away.

6. No pain…no gain!
Bullshit. Nuff said on this.

5. It’s all in your head.
Don't I wish? Again no amount of positive thought will help this one. Trust me I have a very good imagination but I never ever thought I would be like this.

4. If you just got out of the house…
You're telling me! I'm the girl that talks to anyone, anywhere, and even to things. Keeping a social butterfly down is hard work, but I can't make it to my elevators by myself, so going outside is something that I cannot do without a major production behind it. 

3. You’re so lucky to get to stay in bed all day!
Yes I am. The risk of blood clots, the atrophying muscles, the low blood  pressure, the pain of clothes, and even blankets and the odd stiff breeze. You got it sherlock!

2. Just pray harder.
I do thank those of you that keep me in your prayers, it does mean alot to me, however back to the what-have-I-done does not apply. I am not being punished because I perhaps have a different God than someone else. I am spritual, I have my own way of keeping people in my thoughts and pray in my own way. I don't judge (most) people on their religion, but I also keep in mind the 'so mote it be, ain't it harm none.' This should be something for everyone to do.

1. You LOOK so GOOD!
 Thank you? No really, I do thank you. Because I may look well, I am really not, and I understand how hard that is to grasp. Also going back to laughing or being happy a little, I do try to be happy and positive when I can. Yes this pain is severe, overwhelming and over this year I have had to relearn how to do alot of basic things. The looks I get when I'm in the chair go from pity to almost excitement, but I don't have casts, I don't have any tells, except for the butterfly rash. 
Thank you, I do want to still be pretty as my body is a monster inside.

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 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.  

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.

Thursday, October 28, 2010

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.

Saturday, October 23, 2010

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.

 

Tuesday, October 19, 2010

Slipping Again

I am a really a very patient patient. I took a week off of worrying due to Thanksgiving, where I had some dearest friends travel far and wide to spend here. It was great, and of course they were wonderful in understanding what I can and can't do. It was so special and very small compared to other years, but I just couldn't do anything on a large scale and organize a whole long weekend of events and things.  There were a few things that I couldn't do, but that was okay. Just having them here and close was amazing. 


They took me to the neighbourhood mall, where I haven't been in a year. It was very hard, but I did feel safe, although I don't want to do it anytime soon. I was in the transfer chair, and feeling shy and scared; sore and vunerable. I did see some people that were familiar, but didn't know them enough to chat. It was those kind of looks, the confused, the wonder, the pity. I damn hate this pity. I'm STILL me. 


The hardest thing about having visitors is the goodbyes, and I'm still having a hard time with it, even though I will be back to California in the new year on my winter escape. 


In preparations for the trip, I've been calling my doctors to make appointments to refill my prescriptions (that don't do anything but I can't just stop them) and to find any latest results.


The latest and most important ones that I have been waiting for is the radiation. The doctors don't have them, as of today still. This is how many weeks now? 


I'm trying to be strong, and nice, but I'm scared of what they will say, or have me go through again to get it done if they got lost. I'm scared of falling through the cracks - again. 


Falling through the cracks means that I'm not good enough for care, I'm a lost case and either they don't know what to do with me, it's also they don't care to. 


I'm very confused, and the pain is also in new places, new intensities, and it's frightening and defeating. I need help and I don't know what to do.


Is my only option hospice? No thanks, I'm not ready for that. That is giving up. However, I need care, I am stronger, but I am not able to jump back into normal life. 


My heart is breaking all over the place. 


Thank you to friends, family, readers and listeners. October is still Lupus Awareness Month. I implore you to help this awareness not fall through the cracks and be overshadowed. We need awareness out there. Someone you love has Lupus, and needs help.







Wednesday, October 6, 2010

Invisible Again


As not a very political person, I have always taken my right to vote seriously. There has only been on time I haven’t voted in an election since I turned 18, and that was the fault of the elections that didn’t add my new address info when I submitted it.
Even though I usually find most of the names on the ballot some lesser of a handful of evils, it is my right, and I am lucky to be living in a time and country where it is so.

We are heading into a municipal election shortly. I called the elections office today since my abilities and accessibility has obviously changed. I was told there are new polling stations to help ‘the disabled’. Which is lovely, but doesn’t fit me, as it’s mostly for visually and/or hearing impaired.  

I inquired about a mail-in ballot, but that is not an option. My only option is to vote by proxy. In order to do this, I have to sign and fill out 5 pages of forms, in the election headquarters, in front of the City Clerk. (which is only open during regular business hours) I again asked – very politely – is there not anything else that I can do, I am housebound and bedridden. They offered to mail the forms, but I still have to get my little butt clear to the other end of the city to arrange for the proxy. 

I am not a shit disturber, really. This does anger me, and I am quite hurt by this. This is larger than just missing a vote day. This says leaps and bounds about – dare I say – the D word?

I do feel like this is discriminating. I cannot be the only person in such a situation, I cannot leave my apartment without depending on others, and I cannot meet these terms. Why is there not a mail-in ballot? Granted I can’t get out to a mailbox either. Why is there not anything else. I called twice. Spoke with two people, and this was the same result.

I’m hurt, and it is another slam in my face. Well done elections. Nice job politicians. No wonder you don’t hear from people like me or represent us, you don’t hear from us because you can’t.

I should probably call my neighbourhood counsellor, but sometimes I’m just tired of everything being a fight. 

Thank you for keeping us invisible.

Saturday, October 2, 2010

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.

Thursday, September 16, 2010

Truly the Best Medicine.

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.


video




Thank you, and loves.








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.
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.




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.




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.