I am getting better. Recovery isn’t going as fast as I want and need it to, but nonetheless it is happening! I got a second opinion from a different ENT who didn’t have a whole lot of insight into what was happening. Dr. Paparella wants me to try out Scopolamine patches but there is a snafu with my insurance so we are waiting to be able to fill it and give it a whirl… so to speak. It is prescribed to sailors and aviation employees for motion sickness. I am ready to try something new.
I am still doing physical therapy which helps a lot as far as being comfortable since I have to sit in a pretty weird position as well as sleep in a weird position in a recliner. It is really amazing what my physical therapist does. Sometimes it seems like she isn’t doing anything because she is targeting specific muscles and using her hands to manipulate tendons and muscles. This last visit she had one finger in my mouth (it felt like she was wiggling my eye, which ironically enough she was working an orbital tendon), and then had one finger on a muscle near my temple. It was intense, white pain – blinding, it was so sore but I am able to wear my glasses full time again with no pain and can track with my eyeballs much better since the visit. Going through PT is like finding out what never hurt before, having it hurt like hell, and then suddenly having relief you never knew you needed.
I continue to see my care team often. My GP is on maternity leave until the end of October so I am following up with a fellow doc who is also wonderful. I continue to see my surgeon every once and a while and am constantly making phone calls and setting up appointments for various visits, blood draws, injections and so on. I am a human pin cushion. You would think I would be a pro at getting blood drawn but I still get shaky knees and a fluttering in my heart when they poke you.
I still am using a walker and am actually excited because next week I am getting my own walker rather than a loaner from the hospital. I use it primarily out of the house, but still do need it more times than not.
The worst part about Meniere’s is the unpredictability of it. That and the fear. Sometimes I will be thinking about something other than Meniere’s, focused on a TV show or movie, or in the middle of chopping an onion and suddenly that fear creeps into my mind. Am I ok? Am I going to get dizzy? Can I finish this task? Then it becomes a snowball. Am I ever going to be ok? Will I ever not have to feel this? Should I sit down? Will I ever be able to travel? Have children? I know it sounds ridiculousness but this is how my mind works, it goes so quickly from one thing to another. In a split second I have asked myself a million questions that I can never seem to answer.
I know anxiety only makes things worse, but on top of everything else I am having a hard time with money right now. I filed for disability but won’t have a decision until the earliest January and chances are high I will be turned down. I lost my unemployment because I am not able to work right now. So I am bringing in nothing and most of the financial burden falls on Matt. It is so unfair. My family is helping as much as they can. Everyone is struggling. I am calling organizations begging for emergency funds and they are forced to treat me like a criminal because so many people take advantage. I hope Ellen reads this! ha ha
Life is so messy. It’s a sticky glob of trying to balance yourself, your heath, your sanity, and then the health, and sanity of those you love the most. I consider myself to be pretty selfless. If I can put you in front of myself to help you out I will. It has gotten me in trouble a lot throughout my life, but has also given me the opportunity to volunteer and help those who need someone selfless in their lives. But when it comes to my recovery I am horrible at putting my recovery first. Matt reminds me all the time that I need to be selfish and put myself first. It’s so hard to do that. My pain and sadness is also my mother, father, my families, Matt’s sadness. We are all woven together so deeply that each one of us feels what the other is feeling. How can I ignore all of that and focus on myself? I need to smile, I need to be strong on the outside for them. They would die for me, for my health, for my happiness, how can I not offer the same sacrifice? If I was someone else I would tell myself to shut up and buck up and get my health under control. But taking your own advice is never easy.
I am trying to keep my head above water. I credit myself for coming this far. I must keep focused. I have to work hard, challenge myself. Get out of my chair. Clean the kitchen. Do the dishes. Clean the liter boxes. Dust. Chop onions. Smile.