Today was tough, it was rough, but lets go back first to Tuesday, Tuesday I was spending the day in hospital, Things happened quickly ly on arrival, as soon as I was triaged Within minutes I was whisked away ecg, blood work, into a bed IV hooked up, down to Imaging dept, meds started, somewhere in there a doctor came in. I was given meds for pain, meds to activate my stomach, and something else, so-much done so quickly, half a day later, home, in bed pain relief for the first time in months. Wednesday was a mirage of phone calls from varios depts scheduling more tests, then the call from the specialist office setting up an appointment for today. My specialist ( Internist) is already waiting for specialized tests he had done that have to come back from Calgary, he’s still waiting, but today his talk was hard to hear. He said his speciality is to help people like me who have very complex health conditions and try to find the best ways to manage them. As he had thought my muscles are being impacted due to blood flow, it is now further complicated by my nervous system being impacted, the damage to the spinal cord, and the nerve damage that is where and what is causing the pain. He is bringing a Neurologist on board to help navigate this new complication. It is impacting many things and it I am in bed more than out, when I’m laying down the body has less stress and pressure on it, the blood can flow with less stress on my heart. Tuesday the pain reached a new high, I needed the help of those at the hospital. My specialist took a great deal of time today talking to me about how they have to be so careful, because giving me the wrong thing with all my complex issues can cause more problems than they help, the goal is to-get me to have the best quality of life as they can. In January they will be trying some nerve blocks to see if that will at least so that i can enjoy my days. But things are progressing, and although you know when you are diagnosed things will progress, at this point the ”dementia “ piece of the diagnosis seems like the least scary. All the other components are the scary parts, they say people who have dementia usually die of other things not their dementia, for me my vascular system, vascular dementia, which has impacted my heart, my lungs, my liver and kidneys, and now more losses, muscular and nervous systems. When the specialist said said to me that ” he promised he would never give up on me, I was in tears, when later he said he won’t ever quit trying to help me, I just cried more. He is so kind and compassionate, I am truly grateful that my doctor brought him on board in my care a few years ago. As grateful as I am, it does not make the losses of abilities any easier to take. It is something that people with dementia deal with continuously, losses, and they are hard, it down right sucks sometimes. So today I crumbled, today I cried, I cried a lot, everyone thinks I am so strong, truth is I am only strong because since my husband died (2005), strong was not a choice but a necessity. But I am not made of steel sometimes I crumble, these last two years have been extremely hard, todays news was devastating, so I crumbled. Nothing is working right, I have so much inflammation, so much inflammation, I can’t wear a bra, cant have anything tight or restrictive on, none of it feels good, my heart struggles, and along with it I struggle.
I am not opposed to knowing my system is winding down, I am not afraid of death, I will be talking to the doctor to ensure the maid program is securely in place for that time, but I in the mean time I want to get where I can function well enough for one last great adventure, maybe two. Its what i keep focusing on, I just keep saying, just get through to spring, so you can have your adventure.
The next weeks up until a couple days before Christmas will be spend going from appointment to appointment.
My hope is that those who know me will understand that when I need to rest, it is not that I don’t wish I could do things, but i don’t know from hour to hour right know whats possible. Yes it sucks, but its my reality at the moment. As much as it sucks as much and all I want to do right know is cry, tomorrow I will get up and fight for another day.
I am very grateful for my team of doctors and I know how fortunate I am that they work so hard for me, but I also know that ensuring that people understand how hard this is is just as important as showing people that they can have hope and purpose. This is a complicated illness.