Thursday, May 26, 2011

Cardiac Don't Mess Around

One great thing that medicine doesn't take it's time for is chest pain. I had an appointment within a week. I went to the hospital today for cardiac testing. Every dopplar/ekg/ultrasound I have ever had has been very traumatic, yet I wasn't as nervous until right before. However stressing out before cardiac system tests would not be so good. 

The tech was very kind and very gentle with her pressure, although points did hurt quite a bit of course. Luckily there was nothing that showed up as emergency, and I was sent home. 

I'm now feeling extreme pain, intense pressure on my chest and into my spine, and same pushing on my arms, shoulders - my breathing is a bit laboured. Still, I have been through tests that have been much worse. During the test some was audio, I said, see the elephants ARE in a rave in there!

I am 99.9% sure this is costochondritis, and not my heart itself - yet I know this will be difficult to say that it is, but much easier to say what it isn't. This is possibly the most frustrating thing about lupus, and why awareness and education all around is so important. 

On some good news, there is help coming - help that will be available to keep going as I am, with help to and from appointments/tests, and help with social services to help advocate my case for disability.

I am not used to 'powers-that-be' in my corner and I am still in shock and a bit overwhelmed over the entire reality of the situation, but I feel much better and partly my resolve in human decency has returned a little bit.

People do care. It takes a ton of fighting, but it is worth it to find those that will fight along with you. 

Now I have to stick things up my nose to get rid of the hospital smell.

Monday, May 23, 2011

Suck It, Dr. House

For Lupus month, I had the opportunity to be interviewed on my experience with lupus, fibro and RA. It is a very raw look at my life, from when my body started to turn on me and the entire story. 

Please do listen to the show, share it, and comment. It is important to spread awareness, and have the REAL stories come to light.

Thank you for sharing and supporting. 

The show is found at - Show #206 - "Suck it, Dr. House"

Thank you Daniel and Victoria for allowing my voice to be heard. 

Tuesday, May 17, 2011

Giving Up?

As living with any chronic illness, we have a number of barriers to overcome daily, and every minute. Sometimes it is hard to wake up and deal with another day, entirely in pain unable to do what we used to. Because these are invisible diseases, we don't have scars that people see and we have alot of judgments. 

Some judgements come with a 'why are you not trying everything possible, you are giving up, letting your disease win'. It is not that easy. This post is inspired by this article I read from Lisa Copen writing for the Huffington Post -

In my journey so far, I have been told I am giving up, when I am refusing certain treatments. My reasons are based upon what my doctors have suggested, my questions to them and other medical and pharmaceutical professionals, and my own research including my own body.

As I have mentioned in previous posts, I do not respond well to meds. I cannot take anti-inflams, NSAIDS, and the like. Being on such medicines, then going into the cycle of more meds to counteract side effects, on and on, I cannot afford costs nor can I afford what it will do to me. I am constantly amazed at how many people take whatever is prescribed blindly, without knowing what they are on nor the risks associated. This is giving in. 

I have been through radiation, and I do not want to do this anymore. I am and will continue to refuse chemotherapy. Is this giving up? I do not think so. 

I am in this journey on no meds, but I still try to make it through a day. I have lost everything, but I am still me inside and I won't become a zombie and wait for everything else to pass me by. 

I am stubborn. Giving in? No. Realist, and taking charge of what I can with what I do have left. Yes. 

Saturday, May 14, 2011

Kindness, Strength VS Douchebags

In previous posts I have mentioned that I am rebellious and stubborn. I still have learned from my mom for this all.

Today was beautiful out, and I expect that these next few days are going to be stormy and heavy rain according to the reports.

I needed to go outside today. My balcony didn't cut it. I put real (kinda) clothes on, and grabbed my wheelchair, and hit the streets using the chair as a walker. Not so fast though. 

I thought I would add a bit to my physio to walking a wee bit in my apartment building. I ended up to the lobby, stairs down, then stairs up to outside. So I tried. Done. I thought, okay, maybe I can make it across the street.


Maybe I can make it across to the lights on the main street, done. HOLY SHIT. 

I kept going, and going, to the mall, and back. Each little step was a new accomplishment.

In the end, I did over 2.5 miles of walking. Plus 4 sets of stairs, with about 5 each, with navigating my chair too. 

The one thing, once I got back, and I have never done 55 minutes on my own feet straight in years was taking me back to why I hate my city.

A youngish guy that lives in the building saw me struggle with getting my chair up the stairs to the elevator. It is the only way to get to the elevators, and then he slid into one of the open elevators without a help or an offer.

That is fine. I didn't expect, but wow. Just proves my point about people not giving a shit about others. Disgusting.

So to be as selfish - I went 2.5 miles round trip. Not sitting once. 55 minutes, total. Including the real people talk time I did along the way.

I won't be able to do this again, and if so not for ages, maybe. Such is the way of these chronic illnesses.

And those of you that do read, I know you would do support and help if you saw anyone in my position, because most of you know what that is like. You all know I don't bitch much, but that my lack of bitching doesn't mean this shit is a party. Thank you for supporting in that I can't do.

Heartfelt thank yous to you all that  DO care. I trust my fragile life with you.

Tuesday, May 10, 2011

How I Spent World Lupus Day

Today is World Lupus Day. I thank everyone that has been spreading the truth about Lupus, and how serious it really is. Thank you to those that have flooded social media and blogs about awareness and education. We all know that this is serious, yet still takes a backseat to the 'big stars' although does so much damage and is usually fatal.

Year 4 into my 2-10 year range I have of living with this, and I find myself in the doctor's office today.

Overall, I know there is not much that medicine can do for me, and in light of other personal battles it is that much harder.

I am so grateful to this doctor that has taken me on. She is very thoughtful and doesn't rush me. Perhaps I am the only person in the universe that doesn't mind waiting for doctor appointments because that shows me she cares about her patients and will take the time they need. That is very important.

I explained the new chest pains, and she is sending me to have more dopplar and echo grams done to see if it is damaging my cardio system and if not then WTF is this now? I will have to go to the hospital again for these tests. 

My blood pressure is low, but it's not very concerning to her - which is nice. I believe it is low because I am just not as mobile. I'm sitting comfortably at 100/70. She even put the description of the pains as 'elephant party'. 

She was kind enough to (I think) discount the papers for my CPP-D - which is the Canada Pension Plan that all Canadians pay into on every paycheck, like EI etc. I was expected to pay double what she asked, and wasn't sure how that was going to happen as it is.

When I asked about Benlysta, (the first new drug in 50 years to directly treat Lupus) she confirmed my fears. Since it is now available in the US, granted by the FDA, it won't make an appearance in Canada for at least 3 years. Not sure that I have that long to wait, so it is daunting coupled with the price tag - making both points very out of reach.

My doctor asked about my specialist, and was markedly pissed off at his handling of me. This specialist said last August that he won't see me until I go to the hospital to see a dermatologist. Even though I have all the signs and blood test markers for Lupus, he wants to make sure that damn butterfly rash is what it is and not just adult acne. Dude, I can assure you this is the malar rash. She insisted that I call (as I did before I left for San Diego) and say that I need to get in to see him, and that this dermatologist issue was silly.

She gave me 3 more refills of the little blue pills, down from 25 mgs to 10 since I split the 25 mgs as it is now. This will help greatly because I have 1 refill left and it is not easy for me to get around now that there is no car. 

The day wasn't terrible, but it always is tough, physically and emotionally. 

As I was going through the papers to get them ready for mailing, the final box was "Patient's Ongoing Progress..." 

The answer she put was Poor. 

Black and white is hard to read sometimes.

Saturday, May 7, 2011

Roses and Laughter

Mother's Day often comes round every year with many emotions. I have been lucky enough to have the mother that I have. We both say that we raised each other. From day one, it was her and me in the world, even though we did have other family too, but we had this unmistakable bond.

She taught me humour, adventures, to be strong, to move on, to be.
We are best of friends, and still you can't take us anywhere without our rebel streaks and glints in the eyes that come out. Usually followed by fits of laughter and tears. We are very much alike.

When I got so sick, I didn't want this 'adventure'. I found no humour, I wasn't strong, and I hated myself greatly, wondering what I had done to deserve this. I never felt sorry for myself, but it was frightening to witness new terrible things happening inside me, and that I almost fell to the illness already.

We went through a very tough road, to the point where I couldn't have her 'vent' to me about my being so sick. She said that we were best friends, and that's what we do. The hardest thing I ever said to her was, yes, we are, but right now, I need you to be my mom. Snap. She has been amazing in taking care of me. She still sees me for the real me, the same adventurous, humourous, rebel little child I was. I am not just sick. I am still me in here despite us all watching how my body is destroying me.

I know not everyone is lucky enough to have a mother like I have, and things have changed greatly. 

Happy Mother's Day, no matter who you celebrate with. It is a day to celebrate. 

I wonder if my cat got me a card?