In the beginning of this medical nightmare, I was just worried….but I was still able to live my life normally. I had pain but it was mild and came and went sporadically. I would spend my weekends in the clubs dancing. I was always road tripping. I loved to move and meet new people.
Now my life is small. I stay home the majority of the time. In some ways, I love my small life…my husband, my son… but in other ways, I feel like I’m a shell of myself. I don’t laugh very often. I cry on a dime. I enjoy things still…watching my son play, snuggling with my family, creating on a good day. But if I’m honest with myself, it’s like I’ve changed into a completely different person. One I don’t recognize. One I feel sorry for.
And then there’s this week. I had a brain MRI last Saturday…to check on some “fatty deposits”that were found last year. You see, they can’t really tell if they are plaques or tumors without rechecking them. So I was understandably nervous…and more so when the tech’s attitude changed post scan. I am very good at reading people. Very, very good.
I knew they saw something…but I was reassured that it was because there was something to see even if it was benign. But then I got the call…a call that they needed additional scans. I instantly felt like I was punched in the stomach but immediately rationalized that they screwed up and needed a couple redone. So I tried to schedule it for a Saturday and told them to add the neck scans I needed done also(my rheumatologist is ruling out a pinched nerve or disc problem). The man immediately said that he didn’t have an opening for this Saturday (today) and so how about Monday. I asked for the following Saturday…and was told that it had to be sooner…not later. The breath left me in an instant.
So now I’m terrified and scheduled for Monday. WTF.
And then to add to the merriment, I dropped an entire cup of scalding, freshly boiled water on the back of my hand while I was making coffee on Fri. For a moment, it seemed like I was destined for the ER again because, holy fuck nuggets, it hurt like a bitch. But it calmed down after about four hours of bad pain and what looked like blisters at first. Then on Fri night, I developed another cold. Yes, another one. Cold #2,000,000 of this year alone. *sigh*
And then to finish off the week proper…my iPad, the toy I love most in all the land, slipped out of the bean bag case it was in and smashed to the floor. *double sigh*
Trust me, I know that’s a first fucking world problem. I am so lucky to be able to have any toys…and really, the TV and the iPad are luxuries I shouldn’t have. We should have been so much more responsible and put that in savings. I shouldn’t have it to mourn. But when you spend so much time in bed. So much time in pain. Those technological wonders are a lifeline. They are the distraction that helps me cope with how small my world has become. They give me something to share with my son when I can barely move. They break down the walls of my house and give me the illusion of still belonging in this world I desperately love.
Cause I can’t go in the sun (it causes a flare).
I can’t go out in the heat(causes a flare and makes me nauseous and increases the pain).
I can’t make plans(cause if a flare hits, I bail…and since I’ve spent so much time alone…my friends are all booked up with healthier people who can enjoy their summers).
I can barely work(too much pain so I can only work in very short shifts).
And even when I force it…I go out and “have fun”…well, it’s always tainted by pain. Always.
I feel so very alone. And almost like I’m already dead and everyone has already moved on.
So when I think about how I could really be dead…how there might be a tumor on that scan. I actually can imagine just what will happen.
And I just can’t believe this is happening to me. It’s like a cascading joke. A nightmare that I can’t wake up from. Just as I’m starting to get my life together…get a pain management regimen, doctors who say they can help…a diagnosis. That after all this time searching for an answer…that it might be game over.
I can’t bear to imagine not seeing my son grow up…that he might not have his mommy. Or worse…someone in my place. It just can’t be. Please don’t let it be.
Cause I can deal with the pain. With the colds, flu, accidents, and time in bed. I can deal with broken technology, giant copays, and financial ruin. I could happily live out of a box. Just please let me spend the rest of my life being there for my son. I just want to be there to kiss his booboos. I want to hold him and smell his hair….hear his laugh. Please bring on the pain…it pales in comparison to the joy I see in his eyes. Take my legs, my eyes, my hands….just leave me. I can’t have cancer. Oh, please don’t let it be that.
Just the thought of him growing up without me, makes me so sick to my stomach and causes this sobbing panic that I can barely control. He’s my universe. The only consistantly good thing I have ever had. The most permanent and unconditional love I’ve ever known. And I have so much more to give this world. I want desperately to leave a legacy for him to be proud of. I don’t just want to be a faded memory of a sick woman in a bed. I was and am so much more than that…if only I get the time to work on it. I want to be the best person I can be…for him and for me.
I want to walk him to school for the first time…
I want to see him fall in love…
Find a passion…
Oh god I’m losing it…It’s just too much this past year… almost losing my mother. Having back to back health issues, moving away from Seattle… And there’s been so much more in the past few years…I’m primed for catastrophe.
Oh God, I’m so scared.
I hopefully make it through Monday…going to give myself a stroke with the worry. And I hope they get the report fast…cause another thing I’m supposed to avoid? STRESS! Lol…that’s a serious joke.