Living Invisibly Disabled

As you may or may not know, I live with two types of invisible disabilities. The most common one that people are aware of is cancer. The less spoken affliction is in my back and shoulder.

Long ago, before cancer was handed out to me, there was an accident. There was a chain reaction created by someone else that left me injured. It's not an injury that's easy to monitor/explain, it is nerve damage. I now live in constant pain. In the morning I wake up with pain, in the afternoon I have worse pain, and in the evening I have even worse pain.

They haven't found a cure for it, the medical field has found some ways to help, slightly. I get nerve blocker injections monthly. These help make the pain more of a toddler's fury than a rabid badger being fed steroids. They only work temporarily, and the pain level goes back to being as intense as ever.

I'm not writing this for pity. I want you to understand something. Not all disabilities are created equal. I can walk, I'll even make it look like it's not causing me pain, but I've had times that my body almost fails me and I need to sit down quick or I'll fall flat on my face, from pain. Imagine that. You're walking and suddenly your body says, "No more". Can you easily live with that looming overhead? I have a disability permit because of this. I might start out okay when I get to the store, but line ups, avoiding crowds, even just walking the aisles might trigger my nerves to worsen beyond my capability to stand it. I need my vehicle to be nearby. Others have reasons that are invisible, too. Common ones are crohns and cancer.

Don't glare at someone younger getting out of a vehicle with a disabled permit. They have the permit for a reason. Be responsible for yourself. If you're not disabled, don't park in the spots for them. If you're not pregnant or with infants, don't use their spots, either. If you're not a senior, leave their parking alone. It's not that difficult. I know you're in a hurry, and you'll only be a minute, but a minute when you feel like you're being stabbed in the back with razor sharp daggers is an eternity.

Everyone is fighting their own battles, don't add to the attack.

Are You a Mommy or a Daddy?

Today was my oldest's Christmas Concert at school.  While awaiting the children to be marched onto the stage, one child in the audience turned to me and asked, with pure curiosity: "Are you a Mommy or a Daddy?"

Some may have been offended, put off, or even saddened.  I wasn't.  To the contrary, I would like to applaud the lil guy for having courage to ask what he is truly wondering.  Let's face it, most are accustomed to the idea that moms have a fair amount of hair and only dads have little to none.  Don't mention the breasts as being evidence that I'm female, I've seen plenty of guys that could make a Victoria's Secret model jealous of their cup size.

My reply?  "I'm a Mommy, but I don't have any hair."  That was it.  He turned back to see if there was something interesting happening on stage, yet.  If he had asked why I had no hair, I would have answered that, as well.  He didn't though.  This person next to him probably sounded like a Mom voice, maybe he did think it was a Mom body, but there was something off.  His quick acceptance of my response leads me to believe I'm correct in thinking it was the bald head.

I'm glad the boy asked his question.  We need to encourage kids to ask questions when they think something isn't quite right.  This leads to mis-information or lies being stopped in their tracks.  It can spark converstation.  It brings education.

Take care, young man!  I hope no one squashes your curiosity.

Positively Negative

A friend spoke of how hard it is to maintain being positive throughout their cancer journey. There's something we all must remember, whether the hiccups in our life are from cancer or something else:

There's no law stating you need to stay positive about it. Get angry, yell, curse, scream, cry, punch a pillow, tear paper, shred paper, do whatever to get the frustration out. Then curl up with whatever helps calm you. Read a book, have a bath, pet your pets, hug your family, make a blanket fort, watch a scary movie, watch a funny movie, kill stuff on your fave video game, or have a nap.

You are allowed to feel upset or down, or both. Permit yourself to be fallible. You may be a super hero to some, but you are a human, you can be negative, you can be frail.

An Interesting Weekend

With my anxiety about chemotherapy last Tuesday, I forgot to write about my Halloween weekend.  My husband and I were able to attend Hal-Con in Halifax, the local sci-fi convention.  I pushed my chemo till this week so that I could go without the bone-breaking pain and fear of being around people with a cold.  It was an experience.

The first day was not so good.  There was several times that the volunteer staff supplied by Hal-Con were not on the same page as the staff of the WTCC (World Trade and Convention Centre).  There were also times that a couple of the volunteers didn't quite seem to understand what their job entailed, which led to several confusing and frustrating moments.  I did get to see a couple of the celebrities and attend a couple panels.  There were several attendees that didn't like that I couldn't move overly fast (back pain from my injury makes me slow down), so they barged passed us and took the seats we were heading for.  The worst of day one was when the miss-communication between volunteers and WTCC staff had us trapped inside the con.  Every way we went they told us we could not leave from that exit.  I had a panic attack.  My pain was escalating and the idea of being surrounded by that many people and not being permitted to exit the building quickly attacked my mind.  We did finally find the exit and, quite frankly, ran away.  We went to supper with a gift card that had been kicking around from a friend (finally was in town and able to use it), that was a glorious meal, and when we returned to the hotel room they had vouchers for drinks and a plate of sweets waiting for us.  That helped with our stress level.

Saturday was better in that the Hal-Con staff spoke with the volunteers about the issues and tried their best to nip-it-in-the-bud.  We had a hard time deciding on panels because a lot of the ones that we wanted were at the same time, plus there were several celebs that we still hoped to get autographs and photos with.  I was able to see a friend that I had not seen in years and catch up, had supper with them, and attended the soiree with the celebs.  It was fun, but a lot of people surround the popular guests like moths to a flame.  My back had enough of standing so I was stuck at a table.  One of the guests found me, and sat with us, chatting for the remainder of the event.  That was Lenore Zann.  Many would know her as Rogue from X-Men, the 90's cartoon.  Rogue was one of my favorites (second only to Wolverine), to meet her was a real treat for me.  The fact that she came over and started chatting like we were old mates just reuniting after a long separation was very lovely!  After the soiree we were going to just go to bed but there was a bit of a kerfuffle on our floor so we decided to vacate the hotel.  There were some people going to a local pub just a block away, we headed in that direction.  Long story short, our Halloween was spent with Kris and Paul (from Lost Girl), Kirby (Goku) and his lovely missus, Enver (from Agent Carter), Alaina (Supernatural), Fadi (Captain Canuck producer), Rob (Cyanide & Happiness), and a couple others.  The next day was spent quickly going around to say "Hi" to those that we had been at the pub with the night before and running home to get the kids from the family members that had watched them that weekend for us.

I don't think these guests know what that night (the soiree and the pub) meant to me and my husband.  Our weekend was looking like a write-off.  We were questioning why we even bothered with our passes and not sold them off, as money is a bit hard to come by, now.  The weekend was supposed to be a treat for us.  We had not done anything for our anniversary in quite some time.  Chemo kept me locked up in the house often.  Having disabilities, three kids, and cancer has not made going out that simple.  We were extremely close to selling our tickets, especially after Friday's debacle.  Being able to simply hang out and have a glass of wine with them, chatting about everyday things, that means a lot to me.  This also might have been my last Hal-Con.  Tickets are getting too hard to get.  I need the special passes so that I don't hurt my back and can feel "normal" for the weekend.  By feeling normal, I mean I'm tired of glares and whispers because (other than the lack of hair) I don't "look" disabled.  Plus, I don't know what treatments I might be on by this time next year.

So if someone knows these actors personally, or in case one of them sees this blog: Thank you.  I hope that somehow we cross paths once more.  I wish I could send you updates, like some of you mentioned you'd like to receive, but I don't really have any way to contact most of you.

Soiree Photos

(thanks to my friend Scott)

Lenore Zann and Julie

Kris Holden-Reid, Lenore Zann, Julie, Paul Amos

Pub Night

Kirby Morrow and Julie

Julie and Paul Amos

Enver Gjokaj and Julie

Gimmie a Break... Maybe?

Adventures in meta-world continue.  With physical disabilities and three young kids, it makes life interesting.  I'm lucky that my husband is on paternity leave and that he helps with everything at home.  I do still have one issue that he can't help me with: the anxiety before chemo.

Tomorrow will be #6 of this bout of chemotherapy.  That means I might get a break for a couple months if the scans are good.  I still have to go through with it, though.  I need to deal with the feeling that it will make me live with 24/7 for the first couple of weeks.  Ugh, I wish I could make those days just fast-forward.  Instead, my husband will let me cope by taking over then entire household and letting me sleep day and night in our bed.  I'm toxic, anyways, for the first two days so I tend to avoid the kids and people in general.

I am a bit nervous this time because of two reasons: I had a headcold early last week and I attended Hal-Con this past weekend so there's a chance that someone went while sick.  The latter would mean I could be the host of a cold not quite full-blown, yet.  If I get sick while battling the chemotherapy running through my veins I could be hospitalized, or worse, die.  It's not something people like to talk about.  Chemotherapy might be stopping the spread of my tumours but if something else attacks my system, I could not survive.  It's one reason why people should get flu shots and stay home if they are sick.  It has nothing to do with themselves but with how they could infect those with immune deficiencies.  But, that's another rant.

I hope that there's still some readers out there.  I haven't been faithful to writing blogs in years, even my October attempt at posting on my Facebook page a fact-a-day about metastatic breast cancer and breast cancer in general was not-so-daily by mid October.  If not, it is therapeutic to type all this out, anywho.

Follow Up Article to Shave For The Brave

I was asked to do a follow up article for a local paper about the shave that my son and I did in July for Shave for the Brave.  Click HERE for a link to the article.

Take care guys.  I'll try to find the energy to post up another blog soon! Xoxoxo

Becoming Portly

I'm awaiting getting my port installed into my veins. This is leaving me with mixed feelings. I'm contented because this will mean they don't make me into a pin cushion at the hospital any longer, but it also makes me feel defeated because it will be a constant reminder that I will always be on treatment.

It's a good thing because they always have issues with getting an iv in. Once it took 13 tries. Ouch. My left arm will be less bruised once I have this port installed.

It's bad because I'll have this reminder 24/7 that I am on treatment. That I'm a cancer patient.

Being stage 4 breast cancer sucks. It really, really sucks. Bloody cancer.