As anyone with a chronic illness or mental illness knows, December 31st is a deadline. It’s the last day of the year, meaning that your insurance starts over on January 1st. A whole new deductible, a whole new max out of pocket to meet.
So in December, you cram as many refills and doctors appointments and tests that you can into those four weeks.
This week I had four doctors appointments, two physical therapy session, a CT scan, and psychotherapy.
I had a conversation the other day with a friend, and she seemed surprised I had so much to do in a week. I feel like people have this idea of people on disability.. that they lay around and live the life.
Well let me tell you; that’s not true
I am a “professional patient.” My life revolves around doctors, pharmacies, and therapy (psychotherapy and physical therapy). There is not a week that goes by that I don’t have at least three appointments. I don’t sit on my ass all day and watch Netflix. I don’t go to Disneyland every weekend.
I’m sick. I’m tired. Every damn day.
This last week has been especially difficult. I heard some not so great news from a couple of doctors, had a bunch of new tests ordered.. and here I am. Overwhelmed by it all, sick and tired, and just done.
But it’s that magic month of December. So I have to see everyone and do everything I can. So far I have 19 appointments scheduled between now and the end of December. Plus submitting for 90-day refills so I can get through the first three months of the year without having to shell out hundreds of dollars a month for medication.
It’s exhausting being sick all the time. It’s exhausting and discouraging to know that you can’t do everything you want, at any time. I have to pick and choose, and sometimes I choose something (thinking it won’t be too hard) and all of the sudden it was more than I thought it would be, and I’m out of spoons for the day.
Sometimes doctors say scary things. Things like “tumors” and “CT myelography.” They say things like there’s something wrong with your spinal cord. And each time they throw more scary words at me, I take a deep breath and I try to just hold onto my hope. I say my Serenity Prayer and put on my bracelet that has the Serenity Prayer engraved in it.
But on nights like tonight, it’s hard to feel optimistic. It’s hard to let go of all the scary words and things I’ve heard over the last week. It’s hard to think about all of the stuff I have coming up.
My solution? A nap. Always a nap.
Then talk to my support system, get some grounding in, and get ready to start a new week. My saving grace is I have great doctors and a great support system.
Many people who suffer like us spoonies do, have doctors dismiss their symptoms and send them to psychiatrists. Many people don’t have the safety net I do, or the support and unconditional love from their families (immediate, hubby, in-laws) and friends.
Yes, I have lost people on my journey. It’s a lot to deal with. And I know that we have a lot of stuff to deal with and that my health is not prioritized on your list.
But for me, it’s all I know. For over two years, my life has revolved around my illness.
So tonight, I’m going to give in. I’m going to just relax, listen to some acoustic music, and Skype with my hubby as we aren’t physically together right now. I’m going to let go of my worries, have faith in my doctors, say my Serenity Prayer, and remind myself, perhaps with a prayer or perhaps with just silent thoughts, that God guides my path. I simply follow it.
This is my journey. This is the path I have been set on. This is the path that I’ve been meant to live since I was an infant.
My dad was chronically ill too. And he chose to give up. He didn’t change his lifestyle at all, he just let it consume him. Of course, most of it was out of his control. But still, he just let it compound and compound and gave up.
I will not give up.
I am a Warrior. I pick up my sword and shield and I fight.
…Just maybe not tonight.
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