Keep On

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.

 

Dad’s Update 3

Amanda Update 7.18.12
We just returned from a visit back to Amanda’s surgeon, Dr. Paparella. The news was mixed.

The surgical site and the interior of her ear look “perfect”. She had her staples removed and upon return home she was able to manage a bath and had her hair washed for the first time in over a week. That alone helped bring up her spirits.

The problem continues to be her light headedness and instability when she moves her head. Most of the time she is comfortable only when sitting in her recliner with her head tipped slightly forward. Any movement of her head causes blurred vision and a sensation that she is about to faint. This is a different sensation than the profound vertigo she experienced prior to the surgery. She must be attended to at all times and cannot be left alone to walk into the bathroom. We can see slight improvements in her eye control each day and when she does walk, we are back to holding her hand and arm rather than having to grasp her tightly around her waist to avoid her slipping sideways and stumbling. She still shakes a little bit when standing, which again is far better than the shakes she had last week. We were pleased when she asked to try to work on her computer and answer text messages on her phone. These were common acts she could not perform since the surgery.

The doctor told her he is surprised that she is not recovering more quickly since she recovered so well from her first procedure. He did say that this prolonged recovery was not typical but was not unprecedented either. Because of the [extensive] work done, he feels she just needs more time to heal and let her brain acclimate to the revised signals coming from her inner ear. Kathie and I surmise she may also be slower to regain balance this time because we don’t know how well the other ear is helping her brain cope with balance signals. Seven years ago, she had a relatively healthy ear helping her brain. Maybe not so for this ear.

Amanda is very frustrated about her condition. She was not at all pleased when Dr. Paparella suggested it may take another three weeks to a month before she is comfortable with her balance. His story sounded very similar to the vestibular specialist at River Falls Hospital; she is simply needing the time for her brain to recognize the new stimulus from her left inner ear. He promoted continued physical therapy and seems very confident in substantial improvement in her symptoms.

It is tough for us to watch her slow recovery. We know the future will be much brighter, but we all wish this was a done thing NOW!

Thanks for your continued support and prayers.

Dad’s Update 2

7/18/2012 – Amanda update

We just returned from a visit back to Amanda’s surgeon, Dr. Paparella. The news was mixed.

The surgical site and the interior of her ear look “perfect”. She had her staples removed and upon return home she was able to manage a bath and had her hair washed for the first time in over a week. That alone helped bring up her spirits.

The problem continues to be her light headedness and instability when she moves her head. Most of the time she is comfortable only when sitting in her recliner with her head tipped slightly forward. Any movement of her head causes blurred vision and a sensation that she is about to faint. This is a different sensation than the profound vertigo she experienced prior to the surgery. She must be attended to at all times and cannot be left alone to walk into the bathroom. We can see slight improvements in her eye control each day and when she does walk, we are back to holding her hand and arm rather than having to grasp her tightly around her waist to avoid her slipping sideways and stumbling. She still shakes a little bit when standing, which again is far better than the shakes she had last week. We were pleased when she asked to try to work on her computer and answer text messages on her phone. These were common acts she could not perform since the surgery.

The doctor told her he is surprised that she is not recovering more quickly since she recovered so well from her first procedure. He did say that this prolonged recovery was not typical but was not unprecedented either. Because of the [extensive] work done, he feels she just needs more time to heal and let her brain acclimate to the revised signals coming from her inner ear. Kathie and I surmise she may also be slower to regain balance this time because we don’t know how well the other ear is helping her brain cope with balance signals. Seven years ago, she had a relatively healthy ear helping her brain. Maybe not so for this ear.

Amanda is very frustrated about her condition. She was not at all pleased when Dr. Paparella suggested it may take another three weeks to a month before she is comfortable with her balance. His story sounded very similar to the vestibular specialist at River Falls Hospital; she is simply needing the time for her brain to recognize the new stimulus from her left inner ear. He promoted continued physical therapy and seems very confident in substantial improvement in her symptoms.

It is tough for us to watch her slow recovery. We know the future will be much brighter, but we all wish this was a dine thing NOW!

Thanks for your continued support and prayers.

Dad’s update 1

7-14-2012.            Hi everyone!

I thought I would quick update everyone at once about Amanda rather than try to call you all like in the old days.

As you all know seven years ago Amanda had the procedure to treat her Meniere’  Disease on her right ear. The surgery went very well, recovery was quick and she had few symptoms for all these years.

She began to sense minor issues over the past year, but around Memorial Day, she was hit hard with extreme debilitating vertigo. Since most of you have read her blog I’ll dispense with more details about the past month.

Monday (one week ago, 7/9) she had the same procedure on her left ear. The surgery went well again. Dr. Paparella is a pioneer in this surgery (and is right now in Brazil teaching a team of surgeons his methods) and told us after the surgery that he was able to “see and correct the obvious physiological signs of the disease”. He suggested she should have a substantial improvement in her symptoms.

The first three days were unremarkable. She was still cautious, but was moving around quite well and we were all kind of celebrating.

Last Thursday, she became abruptly weak and was unable to stand without help. She felt as though she would fall over if she stood up, which did indeed nearly happen. I was at home when Kathie called to tell me they were heading into the emergency room at River Falls. Matt had to carry her down the stairs of their apartment and into the car for the trip there. By the time I got there around midnight, she was pale and weak and the hospital had performed a bunch of tests to find out what was happening. They found out she had an electrolyte imbalance and particularly low on Potassium. They started an IV and began loading her up with things to correct those problems. By Saturday she was better and we were hoping she could go home, but that didn’t work because she was still unable to walk unattended due to the sense of imbalance when she tried to stand.

Sunday afternoon she was finally able to go home, but with constant supervision.

A Vestibular specialist has been involved all weekend with her care. The chemical imbalances have all been resolved but she continues to experience the light headed, weak feelings. The specialist told us the brain uses three inputs to control your balance; your inner ear (most critical), your eyes and the position of your spine. She essentially is missing the ear component right now. She must basically train her brain to recognize the new information it is receiving from her ears. It almost sounds like she is like a toddler learning to walk. They have also said she has to receive minimal stimulation so that she doesn’t constantly move her eyes to watch the action which then leads to disorientation.

We are seeing Dr. Paparella again on Wednesday and will hopefully confirm all of this. I am sure you all know how agonizing it is when your kid is not doing well, especially when we all thought this would be a cake walk like the last surgery.