I am a trans woman. My wife and I are looking at moving from Edmonton to Winnipeg area. My wife was born in Winnipeg, so she has family there still. I don't feel safe anymore in Alberta. I have called Edmonton home for 34 years.

What would be a good area to buy a house?

Hello Manitobans, I am planning for a road trip in a week. Could someone please confirm if the welcome to Manitoba sign is back up on the Ontario-Manitoba Trans-Canada Hwy crossing?

Hi Winnipeg. I want to share what is happening to me because you don't need to have Ehlers-Danlos Syndrome to understand what I'm asking for.

Imagine waking up every day not knowing whether your body will cooperate.

Imagine that something as simple as walking to the kitchen, taking a shower, swallowing food, sitting at a desk, or trying to sleep could trigger pain, muscle spasms, or another part of your body becoming unstable.

That is what life with EDS/HSD can be like.

I have Ehlers-Danlos Syndrome (EDS/HSD), a condition that affects the connective tissue that holds your body together.

The way I try to explain it is to imagine your body as a house.

Most people live in a wooden house. It can get damaged and need repairs, but the basic structure is designed to hold together.

Living with EDS can feel like living in a house made of clay that is constantly collapsing. You can keep trying to repair it, but the underlying structure isn't providing the stability it should.

And imagine that the materials inside that house are fragile too. For me, it can feel like there is a razor inside my body cutting and irritating my insides. My muscles can lock up and spasm. My throat can seize up and make swallowing difficult. My joints and spine can become unstable.

So when I say I'm in pain, I'm not talking about having a bad day.

I'm talking about 20 years of pain.

I've lost my childhood. I've lost my teenage years. I've lost my 20s. And now I'm watching my 30s disappear.

I've had to give up things that most people don't think twice about: working normally, going to school normally, making plans, being independent, and simply being able to trust that my body will get me through the day.

Think about what your life would look like if your body couldn't be relied on.

That's the reality I'm living with.

Right now, I have spinal instability and need specialized care that I have been trying to access outside Manitoba. My condition can have serious and potentially life-threatening consequences, which is why I'm fighting so hard to get appropriate care.

There are an estimated 125,000 Canadians living with Ehlers-Danlos Syndromes. This isn't just an issue affecting a handful of people.

And this is where I need people who don't have EDS to understand why I'm speaking out.

It has now been over six weeks and I still have not received a response from the Minister of Health regarding my out-of-province referral.

My MLA sent a letter requesting an urgent meeting with the Minister of Health three weeks ago.

There has still been no answer.

While I'm waiting, my health continues to be a serious concern. My finances have also reached a point where I may not have anywhere to live next month because I simply cannot keep up with my medical expenses and basic living costs.

Imagine if this were you.

Imagine being sick, knowing you need specialized medical care, doing everything you're told to do, going through the proper channels, involving your elected representative, and then being left waiting for an answer while your health and finances continue to deteriorate.

You wouldn't want special treatment.

You would want someone to answer you.

And that's what I'm asking for.

Everyone deserves access to medically necessary healthcare, regardless of whether their condition is common, rare, straightforward, or complicated.

What you can do

1. Share this post.
You may not have EDS, but someone you know might. Help me reach people who need to understand this issue.

2. Contact your MLA.
Ask them what Manitoba is doing to ensure people with EDS can access medically necessary specialized care when it isn't available here.

3. Contact the Minister of Health.
Ask why my out-of-province referral has gone unanswered for over six weeks and why my MLA's urgent meeting request has gone unanswered for three weeks.

4. Talk about EDS.
The more people understand what this condition can do to someone's life, the harder it becomes for people living with it to be invisible.

You don't have to understand exactly what it's like to live in my body.

5. If you are a lawyer, please consider helping.

This matter is extremely complex & I am in desprete need of help to ensure that my health needs are met and the Manitoban government cannot hurt anyone in a similar situation like this again.

Just imagine what it would feel like if your own body became the thing you could no longer rely on.

That's what I'm fighting every day.

I'm fighting for my health, my housing, my future, and ultimately the chance to have a life instead of spending it fighting for access to one.

I’m going to keep fighting. I just wish I didn't have to fight this hard to get the care I need.