Birthday

Today is my birthday. 🎉

My birthdays are always bittersweet.
I have not had a birthday without physical pain since I was 13 years old.
I have only had 2 or 3 birthdays where I wasn't in the emergency department within that week, and it is another year gone by with progression.

Yesterday a demo wheelchair was dropped off so that I can figure out what I need in a wheelchair.
For me, getting a wheelchair will give me a little more freedom. It means I can go to places I have had to avoid for the past few years. It allows me to expel a little less energy.
Yesterday - while using the wheelchair - it hit us. On one hand, I was able to motor through the entire Michaels store without getting too worn out. On the other hand, we were really hoping that I would not need an occasional wheelchair until I was 70 or 80 years old.
So it is about 40 years too early.

40 years.

It doesn't mean I will stop trying. I will continue to do yoga at home. I will continue to walk on the treadmill whenever I have the energy (averaging once a month for 10 mins lately). I will continue stretching and walking as much as I can.
What it does mean is that places and events I have seen as impossible or too dangerous to attend are now potentially possible. They won't be as risky.

You will still see me randomly in heels (like tonight when we go for dinner for my birthday). You will still see me without a cane, with a cane, and maybe even two-stepping at our wedding.
You will also see me at places like a Home and Garden show, at a mall, or taking Decker for a long walk, while in a wheelchair.

In all of these scenarios I am in pain. None of these ways of walking mean that I am without pain. It just means that I might be trying to save energy. It means that I am trying to do more outside the house.

With this demo wheelchair I have a new-found respect for those people who are in wheelchairs fulltime. It is amazing how big of a problem accessibility can be. Going up and down ANY slope or ramp of any kind can be brutally difficult. Just going up the slope curved had my hands caught in the spokes and rolling backwards. Doors without the handicap button? Wow. I mean you have to ask for help.
I realized some of the specific modifications I would need:
1. Storage. Carrying a purse and doing any kind of 'shopping' requires extra storage. Pushing a cart wouldn't be easy, carrying bags can't really happen, and you have to avoid catching anything in the wheels.
2. Omg I need gloves. My hands were in pain within the first ten minutes. Braking and slowing down, going on any slope, and just getting used to manually propelling requires good gloves.
3. The 90° back angle is not good for me in particular. I would need a chair that can lean back. Enough room to change positions and lean back so that my shoulder blades don't get so sore.
4. I need as light of a chair as I can possibly get. Being able to easily remove the wheels to carry and store the chair is essential.
5. I need good cushioning. If the wheelchair does not improve the pain levels of my SI joints and shoulder blades, it is less necessary. It will still improve energy, or reduce the speed of the loss of energy, but I would need enough cushioning to reduce the level of joint pain.
6. Larger castors (front wheels). In order to be able to propel myself over floor transitions, bumps, rocks, snow, slush, etc... would require better front wheels so that it doesn't use up ALL of my energy to get through the flooring in between two sets of doors into a building.
7. I will need someone to push me for the majority of the time.
8. My arms will be ripped very quickly. (Win!)

Of course I will want some flair. I am looking forward to buying super cute gloves, to maybe add colour or pearls or sparkle - either in the cushioning, or on the chair itself - and to add some extra storage on the back and underneath the seat.
I also may add a cup holder to go to Christmas markets, Stampede, or Expos as the BMO. Really, whenever you walk around (or wheel around) looking at amazing shows or products or getting ideas, you're usually going around with drinks or food or something. A cup holder might be pretty cool to have for those specific events.

So for my birthday this year, I was in the ER last Thursday, had my Bachelorette weekend, I am testing a wheelchair and using it all week as much as I can to figure out what I require, and spending my birthday with the love of my life.
Bittersweet.

It is a wonderful birthday... even though parts of it are very very hard.

Bitter Sweet but Amazing Day

We had a pretty fantastic day.
It was a little bitter sweet... but still a great day.
Let me explain.

I had an opportunity to sing downtown for the final day of Stampede. It was such an honour to be there and I have been preparing for it for a while, so (understandably), I was excited and anxious and still quite nervous.
A little too anxious. A touch too nervous.
Suddenly last night my throat started feeling funny. It was slow-progressing, but it wasn't just a sudden onset of a cold or sore throat. This was swelling. For a while it was just a tickle and a bit of pain.... but then my voice was affected, and then my breathing...
The nervous excitement caused a pretty bad HAE swell. It required an extra sub-cutaneous injection, but with that and some additional medication, within a couple of hours the swelling was subsiding, and my throat wasn't overly affected.

Then - with it being the last day of Stampede - both Rj and I really wanted to spend some time on the grounds.
Rj was going no matter what, but I really really wanted to go.
There was only one problem.
There was absolutely no way that I could feasibly walk the grounds - even with my cane. Hell, even with my walker.

So we decided to find out if there was a rental place on the grounds where we could rent a wheelchair.
This wound up being the perfect way for me to enjoy being at Stampede.
I got to see the grounds, got to see the cattle and goats, we played a few games, enjoyed some food, and even managed to see a few of the motorcycle air-acrobatics. Normally, doing all of that while using my walker would still result in 10/10 pain, severe nausea, and most likely a trip to the Emergency Department for an IV treatment. With the wheelchair, however, and with Rj being kind enough to push me in it for the most part, I didn't get distracted by intense pain. I could get up to play a game or two and then rest. I could enjoy the afternoon and rest at the same time.

Obviously this is bitter sweet. It's not like I enjoy knowing how much a wheelchair helps me... that in order to function in certain situations, I actually need it, but having that available made the difference between being stubborn & suffering for it, and letting go of my pride and being in less pain.
It's not an easy thing to know that you can't do something without a wheelchair. That deterioration that we were hoping wouldn't occur until several years down the road. I never thought I would let down my guard and actually agree to use a wheelchair...
But today I am glad that I did.
I am lucky.
I am lucky because I have the option. I can be stubborn and stick to a walker, and then suffer for it later, but I am not bound to a wheelchair. It is not a 24 hour a day reality.

Do I want to have to use a wheelchair to enjoy a day like today?
No.
Am I thrilled that the option was there and that the wheelchair rental was not at all expensive?
Yes.

So today...
I appreciate that I have a medication that stops a throat swell in its tracks so that I can sing.
I am grateful for my family of roadies who always set up my gear so that I can just worry about the sound and singing.
I appreciate using a different chair and trying to reduce the amount of pain in my back and shoulders by changing how I sit when I am singing.
I appreciate that wheelchairs are available to rent and that I can utilize such a tool. I am grateful for Rj who was phenomenal in helping me to enjoy today, who was willing to push me around just so that I could spend an afternoon on the grounds.
Without it and without him there is no way I could have gone on the grounds today. I would have collapsed before getting to the first food truck.

A bitter sweet and yet completely fantastic day.

I still got to sing (even though my throat swelled up last night because I was so anxious).
I still got to go to Stampede (even though I couldn't physically walk it, so I had to use a wheelchair).

There are some pretty big difficulties today that are tough to face, but it made my day better - so why complain? Better to see the Lighter Side of such a great day.

Being a Warrior

Sometimes, being a warrior in regards to chronic illness involves being a champion for your illness - attending conferences, information sessions, fundraising campaigns, maybe speaking on behalf of charities, and doing whatever you can to raise awareness for rare or misunderstood illnesses.

Sometimes being a warrior means getting out of bed and fulfilling tasks you set out for yourself in a day.

Sometimes being a warrior is biting your tongue and taking a breath and refusing to allow a bad moment ruin an entire day.

Sometimes being a warrior is finding the light side of a painful or embarrassing situation.

Sometimes being a warrior is just about managing to smile when you are desperately holding back tears, or screams, or full-blown feet-stomping tantrums.

If you suffer from a chronic illness and you are reading this - you are still here, you still have fight in you, you have goals and plans and dreams. That makes you a warrior.