Funny how that happens, isn't it, that the world continues on, even if you don't really want to be part of it. I think there is a time during every single day when I wish I'd already taken care of official paperwork (Living Will, Medical Power of Attorney) before the surgeries I had that went haywire. Had I been responsible, had I had things in place, had a DNR been in order, all the garbage, all the struggling, all the progression since then would never have happened. But I can't live life with regrets. What's done is done, and what I have learned is to have NO REGRETS, to LEARN, to say what needs saying, and to always, ALWAYS be ready be you NEVER know when that breath will be your last so you had better be damn sure you are content. Life, and Death, does not care about your age. It does not care if you are a 63 year old world-famous man like Robin Williams, or a 28 year old woman with a 4 year old and 3 year old. I have let go of the mistake I made in not having paperwork ready; it was a mistake not because I was having repeated brain surgeries with complicated factors. It was a mistake because I was a parent and my choices should have been documented legally and not left to a spouse already overwhelmed from being told I wouldn't make it through the night.
Make no mistake: the world go on. Don't leave heart-breaking decisions to loved ones who are already trying to cope with loss. Be responsible, and set up a living will and/or medical power of attorney. It doesn't even have to be some huge complicated document. Check with a local legal aid center for a free one that is legal in your state. If you want more issues covered specifically than are on the provided form, use the free one as a starting point and type up your own. These issues could be regarding organ donation, IV fluids for hydration, pain relief methods, how long to remain on a ventilator, who you appoint your medical power of attorney, etc. Do not initial or sign anything until you take a non-relative witness with you to have the form notarized (you will have to sign it in front of the notary). Give a copy of it to the witness, and another copy to someone else as well, for back-up. Your medical power of attorney needs to be someone who will fight to have your wishes on your will followed. *You must take a copy of your living will with you to the hospital any time you ever have a procedure or surgery so they can have it on file.*
Moving right along, I know it has been a long time since I have been here. I will be on here more. It'll be a little complicated but I think it will work. I've not written because my hands just can't type like before. I'd love to get Dragon so I can talk-to-text my blog, but no funds for that. What I am going to try after today is talk-to-text on my phone, and emailing it to myself, then copying and pasting it to here. I'll have to clean it up, which will take forever, but less time than the few hours this is taking. I am going to update all the educational/medical journal articles on the side of the page for Ehlers-Danlos, Chiari, Syringomyelia, Postural Orthostatic Tachycardia aka POTS, etc, but that will take me all week most likely as I need to sit and read the journals to look for reliable, quality leads.
As for how things have been around here, there's always medical junk. I had my 29th surgery almost 4 months ago and finally feel like I am starting to really turn the corner. My left shoulder was done this time, and I foolishly believed it would go better than when I had my right one done. Stupid, naive thought! It was horrendously more difficult, had complications, and I'm still in physical therapy. It's been an immeasurably worse experience, but it's not like I had a choice because it got to the point that I couldn't life my arm any higher than about elbow-high. But anyway it's finally getting a lot better. We're swamped with medical bills, collections threats, utilities threats, all because of the surgery, but there's little we can do. We're sending them partial payment every few weeks and letting them know frequently that every payment is on the way, and when the next is coming and how much, but we still get the threats. It's absurd. It's not like we're ignoring them, which is what a good portion of the population in this region does. I'm on Medicare, which pays 80%, and we're responsible for the other 20% since I can't get a secondary plan aka Medicare Advantage. I went on Medicare at 27, so I went on Social Security Disability aka SSDI though I'm under age 65. There are only 3 secondary plans in my county for people on SSDI that are under 65; all 3 automatically disqualified me because I've had brain surgery. And so, I am always responsible for 20% of everything: doctor appointments, labs, testing (including 120 MRIs/CTs), surgeries (brain surgeries have been 350K for the drs, 150K for the hospital). We have reached the limit on our two credit cards. Before I got sick, we never used them, just had them put away for emergencies. Our two kids' college funds are gone. Their SSDI benefit (because of me) is used for the mortgage. The do not have insurance, though they both take medication. Meg's issue is maintained well with a prescription but Collin has Ehlers-Danlos like I do. They had Medicaid through the state for a couple years, until January when Arizona got rid of the Medicaid program for kids. They told me, "There's ObamaCare now, just sign up for that." We tried that, but it was going to be $500 a month (Medicaid was $60) but even if we had that money (yeah right) they wouldn't cover any services until we paid a $15,000 deductible first. That's my whole year of Social Security! Not gonna happen.
Enough on that. The kids are growing like weeds. They are off wreaking havoc to their 7th grade teaching team right now. They are together in the same 7th grade team, most of the same same classes. Collin is a wee bit taller than me and skinny as a stick. Meg will probably be taller than me within a couple months, as she is almost there now. She is muscle-y like her dad and lots of feminine curves. My parents will be pretty shocked when they visit from Germany in a couple months. They are good kids. They handle things really well. There's been a lot of tough loss in a last few years. My grandparents who pretty much raised me, whose house I went to every day, my grandmother was killed three years ago (by a relative), and my grandpa died a year ago. The court case has been just absolute bull shit and nothing but stress. I don't think anything that ever happens with it is ever going to bring any healing. My cousin Melissa, on the same side, also died last year ago, not long after Grandpa. She divorced her husband of 20 years, right after her youngest graduated high school. She entered the dating scene again and the first guy ended up really possessive. She broke it off after a couple weeks but he wouldn't hear anything of it. He showed up at her house in the middle of the night but she wouldn't let him in, causing a loud ruckus and waking neighbors who called the police. By the time they got there though she'd been shot in the head and stomach, and he'd shot himself in the head but was still alive. They took him by ambulance to a helicopter but the doctor on board pronounced him dead so they never took off. I still haven't heard the results of the toxicology but my second cousins (her kids--E having just graduated high school 3 months prior; J got married the weekend before; S is in college) thought he was high on more than one occasion when he was at their house. I am not blind here, and realize there is a possibility Melissa could have been experimenting as well. Regardless, she didn't deserve for this guy to become obsessed with her and thought since he couldn't have her, no one could, so killed her execution-style. The only bit of comfort is her having passed instantly.
The whole thing with Melissa has been devastating. Things were left badly between us because of how she'd been treating someone in our family. I didn't reach out to her with forgiveness, as I should have because that would have been the right thing to do, the way I think God would want me live. Instead I held this grudge and the chance to make things right never came. I can't imagine what the man's family is going through. It's a small town where everyone knows each other. They've basically been living in hiding, not making even a single statement. These things with my grandma and Melissa, they are a horrendous reminder of how violence--whether random or domestic--has become so commonplace in our society. It's not something that happens to only "that" person and never "me." Of course I miss my grandpa, his loss still being pretty recent, but the way my grandmother was ripped away? It is so unfair to get to that age, only to have someone take it away in an instant. It's a loss that just does not quite heal the same as losing a loved one to age, having experienced a great many things in a long life. Though she has been gone longer, I still find myself blindsided at moments when I least expect it, shocked she is not here, that I can't call her to tell her something, and the pain is so overwhelming I just can't catch my breath.
I've been writing this all day, typing around phone calls, Skype chats overseas, breaks between monsoon lightning storms and floods, and it's now 2145. I am done, for now anyway. Tomorrow I have PT am planning to post about splints and braces, with updated information. I'm going to sign off for now and get meds on board.
Rest easy,
K
