Having Pseudotumor is living your best life, making memories with your child, enjoying your husband, working on your business and Boom a Pain that stops you in your track
Pseudotumor is trying to make the most out of the good time and live a semi-normal life and boom now you have to try and hide the pain from loved ones.
Pseudotumor is trying to adapt your life so your illness & disability won’t affect your childs life. And Boom it starts too.
Pseudotumor is making yourself believe that this new pain, this worse pain is nothing. That you’re managing just fine and then boom your husband is forcing you to call the doctor.
Pseudotumor is arranging rides to hang out with friends, going to see family and then boom arranging rides to constant testing and doctors appointments….again
Pseudotumor is going 2 years and 6 months without surgery then boom getting the call no one wants to hear telling you surgery is being scheduled. Feeling nothing but gratitude that’s it’s been this long
Pseudotumor is having to tell your family, it’s trying to explain to people who don’t understand why you were okay two weeks ago but you’re having brain surgery today. It’s hearing “but you were doing so good, what happened.” It’s cringing when you hear people wish you a “speedy recovery” when you know that for you it’s not speedy. You’ll never truly recover. It may be 6 weeks, 2 years or 20 years but this will be your fate again. It’s fearing that things will be worse after the surgery and not better but praying for better
Pseudotumor is feeling lonelier than ever (although you’re not) because no one can really know what this does to your being or how it feels to be in the pain you’re in Pseudotumor is grieving yourself and the time you’ll lose during the process of surgery and healing. It’s also feeling relieved that hopefully some of the pain will be gone. Then feeling guilty for the relief you just felt, as having surgery is going uproot & change your loved ones lives. It’s knowing that this illness can kill, that every surgery is risky but pushing that thought out of your mind as you try to remain positive. Having Pseudotumor is rough, it’s scary, it’s a constant relearning how to battle it at each stage of your life. Pseudotumor Cerebri is all these things and so much more. Here’s to surgery #16
Keep me and my family in mind as we relearn how to navigate this lifelong battle.
To all my PTC/IH/Chiari people who are Enduring right now. Know that you’re not alone. Keep Enduring!! We got this