Wednesday, March 29, 2017

Post-operative recovery

Good Evening all!

Well, I've been trying to lay low the past few days to catch up on much needed rest. Today marks one week since surgery and my recovery is already two times faster than the last round. Cognitively I don't feel that I've lost anything and speech did not pick me up as a discipline, so that validates that belief. I woke up from surgery feeling like I had just taken a very long and restful nap. I was fully alert and oriented before we made it into the PACU for recovery. My left hand is still regaining some dexterity as typing with both hands is mildly challenging, but I am beginning to be able to tell where my proprioception is on my left side and so I can type with both hands again even if it is slow. I have definitely atrophied on my left side and it will take a few months to regain my full strength, balance and muscle mass, but thankfully I know a good PT while I wait on my orders to be processed through the hospital system.

Today is a day where I am reflecting on a few things that have come about with this new tumor. Prior to this surgery, I was angry and mean and short tempered. That anger has gone with the removal of the tumor, but the damage it did remains and will likely be permanent. As is the case with these things, I lost some more friends (and one who I considered very near and dear to me and that, generally speaking, I got along with on most things even if we didn't always see eye to eye (I was the "by the book individual and this other person was the laid back care free type). I have always been a prodder, I've even gone so far as to be perceived as a bully a time or two. I have always been the "poke the bull" and "suck it up" type individual if you will; but it was amplified two fold with this new tumor. I was short, uncouth, and flat out mean to people close to me. I knew it, and some days I could control it, but most of the time, it just came out of nowhere and steam rolled me into a level of rage I've never experienced before. I hated this me because I harbored hate in my heart for the first time ever and while I am extremely and deeply passionate about things, I've never felt hate to that degree before. That being said, I made some disrespectful comments to this individual and it was enough for this person to decide they didn't want to tolerate it anymore. I don't blame them, I probably would have done the same if I were in their shoes so I can only accept responsibility for my actions and work to learn from them. I am extremely apologetic to anyone who felt personally victimized by me during the past 6 months. I can't change the past, but I can start fresh. It's my only option. This illness has taken so many friends from me, many of who were just exhausted from the emotional rollercoaster that ensued regularly or just didn't know me well enough to know how to support me. I don't fault them, I empathize with them. There is only so much you can put up with before the exhaustion becomes overwhelming and you have to remove the toxicity from your life (I understand that more than anything). Its somewhat curious to see both sides of the issue. In a sense, it gives you an understanding that might not otherwise be achieved, but it also makes it hard because you can't explain things to those who have only experienced one side of the equation.

In the end, the ones who truly care will see you through thick and thin without question and with unwavering love and compassion (even when you don't deserve it). Those are the people I want by my side to cheer me on during the days when I can't be my own cheerleader.


Friday, March 10, 2017

To my representatives in Congress

As I prepare for surgery number 2 in the coming weeks, I feel compelled to share the letter I wrote to Colorado Senator Cory Gardner in regards, to my current concerns with the attempt to repeal the ACA. Enjoy and feel free to share. They need to hear our stories and hear us, we the people!



Senator Gardner,



I hope you have had an excellent week. Unfortunately, this letter is taking twice as long to write due to the fact that I have just learned yesterday that I have a fluid filled cyst on my brain that due to new tumor growth is now putting pressure on my motor cortex causing weakness on my left side. I now have to use a cane to walk as a result of weakness, can only type with one hand and am preparing for my second brain surgery. I am 32 years old. As you are aware based on my past letters, I was diagnosed with a brain tumor in 2014. Thankfully, all this can be remedied with surgery, but the new tumor is more aggressive than the last and there is the possibility of having to have to do chemo again. On top of that, I will likely have a long and challenging recovery involving PT, speech and OT for several months, maybe in an inpatient rehab setting. The cost of all of this is sure to be incredible and I will likely end up paying a significant amount to cover costs. The good news is that this surgery will be covered under the provisions of the ACA, but if the tumor comes back in a year or two, who knows.

I am concerned with the recent release of the GOP proposal for the replacement plan on the ACA, as it looks to benefit the young, the wealthy and the insurers but not the elderly, the sick or the poor. I am young, but I am sick and if this bill is allowed to pass I will likely not be able to afford coverage under my husbands employer plan.  You see, I am now on disability as a result of my deteriorating situation. I want to go back to work in the future because surviving on my husband’s income and my meager disability check is not enough to pay the bills forever. As I’m sure you are aware, this bill does away with large companies being required to provide their employees with coverage. This is unethical and a corrupt business practice that puts corporations over people. That means, when the next tumor pops up in the coming years, ‘I will not be able to afford the life saving surgery I need to live. I very much want to work to help ensure my fellow Coloradans do not face the potential for loss of coverage and this bill will kick millions off their plans. I would love to meet with you and share my concerns and my story. You have the opportunity to be the new face of the Republican Party by listening to your constituents concerns and improving the livelihood of all Coloradans.


Cordially,
Your constituent in 80226






Laura Davies, PT, DPT, COMT