Just about six months since diagnosis. Bumps along the way. Almost six months since I started this blog. It has helped me to put thoughts down, to reflect on all of this change in our lives. Lately it seems to just have served as a journal for the last couple of months as I've navigated new waters and it has strayed from my original ideas of what this blog would be. I wanted to share my experience with frontotemporal degeneration beginning with diagnosis in the hope that others would find it helpful to them. I have access to statistics on BlogSpot, showing the number of times my blog is viewed, which posts readers have "clicked" on to read, which countries readers are from, and how my blog is accessed. I've been pleased to find that the majority of readers are accessing my blog through the Association of Frontotemporal Degeneration website (theaftd.org). I hope readers are finding this helpful.
I would appreciate any comments you might have - about this blog, about your experiences with FTD, about any information you think I would find helpful, any tips on how to get through this with a good frame of mind. I know I'm still early in this journey. I've found I'm growing weary of it with the new developments from the chronic subdural hematomas. I don't seem to have the time to stop and take stock of life, to remember that today is the best day Dave is going to have, to take advantage of the knowledge and make today count. I'm spending time researching, on the phone with the insurance company and all the doctors and groups that we're getting bills from now, arguing that the fact the doctor on the neuro critical care floor for two days during Dave's second hospitalization isn't on our insurance plan should be overridden by the fact the hospital is on our plan - but this particular doctor won't accept the allowed amount from our insurance company, and is requesting full payment for the amount billed - which sets me to raging about the greed of this doctor, and the fact that the hospital shouldn't contract with a group of doctors that won't accept the allowed amount from insurance companies, especially when a person has no control when entering the hospital of knowing who might be on for the day. Medical bills are mounting from three hospitalizations, and we have another one coming up. I get to wondering about the third hospitalization and if there were any doctors that time that weren't on our insurance, and what about this next hospitalization? I am angry about the lack of control over any of this - too many things are out of my control right now. I worry about my job, and the fact my family medical leave is running out soon - what do I do if/when Dave has more issues? I'm the only breadwinner. I worry about the financial aspect of his current health issues, as well as the long term prognosis of what seems to me to be a constant recurrence of the subdural hematoma. Does all this make the prognosis for the FTD worse? Shorten his life? No definitive answers, I know. Just some of the myriad of thoughts circling through my brain. Thinking for two, since that very part of Dave's brain just doesn't function well.
And yet, just getting this all down some how brings into perspective how much worse this could be. We have insurance, we have a roof over our heads and food on the table. I have family who are supporting me through all this, and a wonderful advocate in our neurologist, helping coordinate care and helping us make decisions. I still wish to run away some times. At a time when many turn to their faith for strength, I am feeling angry. I know bad things happen to good people, and that God isn't responsible for all this. But I'm wallowing right now. I pray, but it doesn't bring me peace at this time. I need to get past the next couple of weeks, get Dave as healthy as he can be, get back to work, get back to some kind of more normal. Nothing about right now seems normal, or I guess I just can't accept it might be my new normal. It can't be how it's going to be from here on out. So I have to keep telling myself it could be worse....it could be worse. I know this to be true. I just need to get to the other side of the brain injury problems. I just need to breathe (I'm realizing I use the word "just" a lot...??). I know I said 2015 had to be better then 2014. I'm changing the calendar! I'm picking June as the new target for this being behind us.
I want to get back to making this blog about positive things - about proper perspective - about enjoying this life - to raise awareness of FTD. I need to get out from under the little rain cloud that seems to be following me! Because life IS good. We had an MRI today, a CT scan tomorrow, and a meeting with the neurosurgeon to schedule our next surgery! My "to do" list is different then most - but certainly very interesting and challenging! Keeps me on my toes.
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