In Search of a Plan

I started this blog and website to share my story and connect with others with chronic illness and their caregivers. I remember feeling so alone when I was diagnosed with lupus. I didn’t know anyone with lupus and didn’t know anything about it. I felt so alone and terrified even though I was surrounded by people who loved me. It’s weird being surrounded by loving, supportive people yet still feeling all alone. While my husband has Crohn’s disease, he understands what it’s like to have a chronic illness but he doesn’t know what it is like to have lupus anymore than I know what it’s like to have Crohn’s. We are both sick but can only commiserate with each other and try to understand.

Lupus is insidious. It works its way into every part of your life and there is no escaping from it, only the occasional, brief reprieve. Feeling like I have the flu is a normal day for me.  Joint swelling and pain, aches and chills, nausea and unexplained vomiting are all normal days for me. I try my best to ignore it, pretend I am okay. I can still function and get by but it’s exhausting. Some days its like the rug gets pulled out from under you and you are left trapped on the floor. You have to get back up and start again.

Being sick doesn’t have to define you and it doesn’t need to take over your life. It’s a daily struggle for sure but with some creative solutions you can survive and even thrive. As I sit here drinking my coffee, I find myself thinking more and more about the fight against my illness. It’s a struggle too many people face. I started this blog and website to share my story and connect with others. You have to accept that failure is going to happen but it can’t stop you. 

Just like in communications, there needs to be a plan. You need a plan to engage with your health and your health care professionals. Ignoring illness only makes it worse so don’t ignore the warning signs and listen to your doctors. Like any battle, you need a strategy to win, a plan. When you have a chronic illness, you aren’t just fighting a battle, you are fighting a war with no end in site. It’s a war you have to win at all costs.

There will be tough decisions to make. People assume deciding to become a medical cannabis patient is easy but it isn’t, even though there has been a medical system in Canada since 2001. Deciding on any medication, treatment or surgery is never an easy choice and shouldn’t be treated like it is. Own your choices and stand by them. You know yourself better than anyone and don’t let people push you around or question your personal choices.

I have been accepted by some and rejected by others for the choices I have made and I have to live with that. I made the tough choices I had to make and I stand by them I made educated, informed decisions that have proven to be the right ones. It is the only type of decision you can make when you have a chronic illness. Hopefully you don’t have to make those choices alone. I am a wife and mother with a chronic illness who uses medical cannabis. I am a strong and determined woman with almost 20 years experience working in communications. I have developed skills and experience that are useful. I have built a life in spite of my chronic illness. It will win some of the battles but I will win the war.

I am in search of a new plan. It has to change over time as my illness changes. I need a cunning plan. Something new that the lupus won’t be expecting. Fortunately, I have time. I see my Rheumy next month so I have time to come up with a plan to discuss with him. Battle plans are being drawn up. I am aligning my forces and am ready to win the war.