Tag Archives: vestibular acoustic neuroma

Update, Entrepreneurship, And A Visit From The Flexi Founder

In his wisdom. my son Andrew said “Mom. Thursday was hard. It was really hard seeing you so impaired. You were so swollen and swelling at we watched into the night on Thursday. Even I had to cry. But don’t delete these photos. On bad days you are going to need them. You will have come so far and you will need to know just how far that is.”
Even though we have one, Lydia is unable to view my “scar” photo. My right ear and neck are very swollen. Today I am very dizzy, having finished both OT and PT, and waiting a bed placement at Mary Free Bed in patient rehab for up to two weeks . This is what is next on my agenda. This is over 40 minutes from my family, and a big sacrifice for everyone. I need to get well. Staff here at Bronson is so good about anticipating my needs, and at home things are “reactive.” Just how much stress the family is all going to be under is significant to me! I need to go rest well where needs are less stressful to the prepared staff.

Yesterday an awesome surprise came in the form of our CEO and flexi founder, John Dorsey. I had had been up many hours in the night very sick, and I had literally been “allowed and encouraged” to sleep. No one at the hospital knew John was coming or the significance of the fact for my family. They would have managed differently if they’d known.

My kids got Entrepreneurship 101 from one of the best on Monday afternoon. They got to eat lunch with John Dorsey, founder of Lilla Rose, and talk the future of the company. That he invested in my family, in my children, in their crisis means so much to me!

Thank you, John! Seeing our situation as a “Unit” and not just me with a difficult thing to overcome means much.

Lydia, John Dorsey, and Andrew

Peter and John Dorsey

So today: A little more healing. Vulnerable, raw, tired, dizzy, loss of some modesty, loss of my “control freakishness”, memory loss. I will count all loss gain in a few weeks.
Preparation for more future. That describes my day.

12/04/2018, 9:30 AM, Post breakfast, post shower where they let me wear real clothes! And using a walker because I’m a Fall Risk…

I’m in a good place!

 

Blessings,

Deb

I Finally Got Angry

A few weeks ago, the weekend of my surprise diagnosis, Anna (10) asked me if I was angry at God. I asked her if she is/was, and she hung her head before admitting that maybe she was just a little. She didn’t understand why this had to happen to her Mommy and her family. No worries. We’ve been talking through this. I told her she is allowed to feel a little angry, God didn’t give her that feeling for no reason, but let’s not stay angry forever. I told her that she had a big support system, and that as long as she was talking her feelings out with us, our pastor, our trusted friends, that through those feelings she would come to grow her faith and maybe understanding of why this is happening. She still is afraid to leave me for long, but she’s asking great questions, reading her Bible, coloring Scripture, and she is talking. This girl asks tons of questions. She always has. Sometimes it’s exhausting! She loves helping me add names to our Thankfulness gratitude basket, and to our cards blessing basket.

To answer Anna’s question directly. No. I’ve not been angry. At all. Surprised is an understatement. I might at times feel frustrated or sad that my plans are derailed, but I do try to keep the focus that God is NOT surprised. His plans are better than mine. Just maybe I needed my plans derailed. That doesn’t mean I have understanding yet either. But no. I’ve not been angry. I have frustrations at some of my physical or cognitive limitations and how long things are taking me now. I have been frustrated that some things that should be easy, like putting on socks, no longer are.

I’m doing them anyway. I just need to build in more time. But, yesterday afternoon, for the first time, I got really angry. I got angry because there are parts of my situation that are just STUPID and so out of my control.

We got up early (for me early is anything before 8 am) to finish prepping for our carpet cleaning. The guys were here by 9 am and I was even showered, dressed, meds taken, and fed! That is a huge accomplishment, so I was feeling great! I finished up some projects for the kids’ doing the Holiday Craft Fair-It’s the Big One in the guest room where the carpets weren’t being cleaned, and Anna was helping me. And by doing projects, I mean….I was sitting. Still.

At some point, I got up to wobble to my bedroom, to admire the clean carpets, the cobwebs were vacuumed away in the corners, furniture got dusted, and noted that my nightstand organization needed a book moved.

Read that again.

A. Small. Book. Needed. To. Be. Moved.

I walked to the corner, slipping past the nightstand to look out our windows since the curtains were moved up out of the way for the carpet guys. I admired the beauty outside. I looked down at my nightstand.

I moved the book.

I moved the book and I fell. I first pitched to the right side, caught myself, tried to rebalance, pitched backwards (this is one of the new symptoms for which I’d called the doctor the day before), tried again to restabilize, and was pitched hard into the corner of the room and window.

That’s how stupid this is.

I wasn’t moving, wasn’t walking too fast. I wasn’t even walking. I was having a Be Still moment, I dared move a book, and I fell.

But you all….I moved a book. That made me angry. I wasn’t lifting. I was not walking too fast or too slow. I was standing properly. I even had my hand on a table to remain steady. I hit my head on the window in trying to catch myself, I wrenched my neck and shoulders. I yelled for my family as I began to pitch out of control. And I fell.

Still. I was still and I fell.

 

This. Is. Stupid.

 

And I got angry.

 

As it turns out, I actually hit my affected side. I initially didn’t think so, but my affected right side of my head and face is numb from the tumor, so I didn’t realize. I iced my head…cried…yelled a little at how stupid and inconsistent this is, and went back to my sitting tasks. Later in the day I went with my children to set up for our weekend show where I’d hoped to at least make a short appearance at a less busy time of the day today . The jury is still out as to when that will happen. I didn’t fall during set up and I was even able to help a little. Our booth space is pretty! But I won’t go if I’m a danger to anyone. Safety is really important to me. (In September before we knew what this was, I was at an event where I did trample a small child. And the child got in trouble for “getting in my way.” But none of us knew that it was really me being so imbalanced. That cannot happen again.

Booth 29 in the Main Room of the Kalamazoo Expo Center. It’s the Holiday Craft Show: It’s The Big One.

There were other annoying and angering Stupid things. My daughter was chewing gum while we set up. That made my head dizzy. In an attempt to tease me, not to hurt me, she said “Mom. That doesn’t even make sense.”

Stupid. I know.

 

She’s right. It makes no sense.

Let’s not drive on the highway, shall we? I feel certain death at any speed over 40 mph. I feel out of control I feel sure we’re going rear end someone. Swerving cars cause me panic.

Stupid. Irrational.

As I cried in my husband’s arms at how STUPID this is, I said….I don’t know if I can do this for two more weeks. Tell me it’s only two more weeks. Wait. It’s Thursday. Now we can officially say “Surgery is less than two weeks away.” I can do anything for less than two weeks, right? Keep telling me: Less than two weeks. And the new normal starts. “

Stupid might not last forever.

But I still got angry.

Blessings,
Deb

My Version of “Mindfulness”

Early in September the doctors I was turning to for help were sort of treating my condition as though I needed a mental health evaluation, and that I was “just” having panic attacks and anxiety. I had a full body case of unexplainable hives, people, and real physical symptoms. They were doing testing very slowly and acting as though my anxiety was an overreaction. Honestly, out of desperation for help, sometimes it probably did look that way! May I remind everyone that I’d not seen a doctor is 10 years? I obviously have managed my mental and physical health quite well until I knew I couldn’t any more. I was turning to them for HELP and feeling frustrated.
Anyway, it was suggested that I practice “mindfulness.” and go to my “happy places” and imagine myself on a dream vacation and tell myself bedtime stories, to document for my triggers for when anxiety happened. Some “triggers” were when I had that awful cold in September and felt I couldn’t breathe. That’s when I began noticing my “triggers” were that I often could not feel the back of my throat and was choking on saliva. Or I couldn’t feel the lining of the right side of my nose. Or that I’m burning the lining on the right side of my mouth on food, but what? How? Now I know I can’t feel the lining of the inside of the right side of my mouth, for instance, because of the pressure from inflammation of the tumor on my facial nerves. It’s like a permanent state of having a hefty dose of dental novacaine on the entire right side of my face. Or that I was unable to regulate my body temperature and was always way over heated which made shortness of breath worse.
More than once, I was sitting bolt up in bed from a rare sound sleep-think I was only sleeping about an hour or two at a time. That was my trigger. Sleeping. One time I was listening to my pastor’s previous week’s sermon. I was relaxed and suddenly short of breath and in a spin. No warning. No reason. No ability to take a deep breath.
Anyway….I threw the mindfulness apps to the wind b/c they actually frightened me more than they were helping. They made me feel like I was being ignored. I bought the white noise machine that was suggested to help with sleep. I turned everything toward “how do I gain peace.” It’s hard for me to read more than a few minutes. It’s been a struggle to read even a post on FB. It’s a struggle to read a devotion. Listening is a struggle because of the vibration in my ear and head. Sometimes my head feels like it’s been shaken loose just from sound.
And then the bad dreams started. The frightening, these are obviously not from God, and obviously there is an evil piece of warfare going on in my head, my mind, my brain kind of dreams. Ones that I don’t want happening because they strike the deepest fear at the very heart. And note? They are when no one is around. I’m alone. My family is sleeping. It’s dark.
All the “positivity” you see is me combatting that very reality in my life. Interestingly, God has never let me see anything except what I needed for any given moment. I see the verses exactly for the spot I’m in. I see the inspirational devotions by authors at 3 am when I’ve been shaken awake that speak exactly to what has been shaken in my soul and brain.
So now that I’ve set a stage, permit me go back to the suggested mindfulness apps…and bedtime stories that I actually found offensive and ridiculous. Here is what I found instead. I have had this series of music on nearly non stop, sometimes even at night. If I wake up, I see snippets of verses and hymns set to the music. I have no idea who this guy is. I only know that his music is calming my brain when it’s feeling shaken. It’s feeding my heart and my mind and my soul when I feel weak both physically and emotionally. I’ve not had a moment of “mental health anxiety” since I started doing this “method.” I’ve had no more moments of “I can’t breathe.” or overheating body temperature since an actual diagnosis! I have normal periods of grief, coping, laughter which I doubt is the same as “practice your deep breathing” behavior modification techniques the medical people wanted me to use before I had a real diagnosis for real potentially life threatening physical issue. And I’m having fewer scary dreams since the diagnosis.
So if this helps anyone who is worried about the idea of mindfulness in a spiritual realm that is not from God, as I was and did not want to entertain, maybe this link on YouTube will help you too. I’ve been able to listen to other things as well, but these are the calming videos. I have them ready for the hospital recovery.

Blessings,

Deb

PS. I am not minimizing mental health issues, and needing this sort of therapy. I know that this a serious issue. It just wasn’t appropriate for me or my faith walk. If this is not where you are, please do listen to your own professionals!
PPS. Over the last 10 years of our knowing about True Vine Equestrian Center and Jonathan working and training out there, and our sometimes volunteering or supporting, and now Anna taking lessons, we have appreciated a peace that God has surrounded around that facility. As I left lessons with Anna just a few weeks ago, this was the sunset over the grape fields directly across the street. I appreciated the “look up and see the peace” then….and I appreciate it today.