No Stress, Just Play

My husband and I attended our first Indian wedding this weekend. The best thing about it was that it was a bubble in time. Everyone was so colorful. The music was fun and forced you to dance (as much as I could.) Getting all dressed up in brand new... everything made me feel like a little kid again playing "dress up." It was a joyful celebration and we were honored to be included.

 

It is so easy to let fear and rage take over my life these days. Between sickness, my mitochondrial dysfunction and the obvious... politics, it felt like my brain just slipped into a warm bath. I felt rejuvenated and hopeful. Nothing is better than the celebration of love.

 

My mom commented that she's never seen my husband look so happy as he did in the photos from the wedding. I have to agree. Its been a long time since I saw him smile that big and let loose. There wasn't even alcohol. He was just really that happy. I love it.

I danced too much and paid the price, but it was worth it. It felt so good to get out there and move to the music. I miss that. And I can't remember the last time my husband and I danced with each other. Moments like that are sacred.

As the world surrounds us with hatred and chaos it was good to remember that there's still love. People still falling in love. Having parties. Dancing. Eating cake. Coming home from the hospital (* YAY MOM!) Kissing, hugging, making art, taking trips, watching puffy clouds that look like animals. Life is still magical. I just have to pay attention and celebrate being alive.

"Minnie" The Meningioma

I haven't posted in a while. I've been struggling to keep working as best as I can, sharing the news of the brain tumor with family and friends, juggling doctor messages and phone calls, laundry, being supportive of my son (who quit his job of 5 years the day I found out I had a brain tumor), enjoying life and distracting myself, processing my feelings and sleeping as much as humanly possible.

-GASP-

Yes, that tightness in your chest as you read that list is exactly what life has been like these past few days. But there are bright sides a-plenty!

1) The neurologists have decided I have a single tumor. I've decided to name her "Minnie." She's under 3cm big and is in my Left Temporal Lobe.

That's the green area.

2) Family has been super understanding (and of course shocked.) We're having a massive outpouring of support and specific offers of help. That has been amazing and made me feel very loved and much less worried.

3) I live in a big town with excellent health care. From the time of diagnosis to the time I'll meet with my neurosurgeon to go over a treatment plan will be less than 2 weeks. 

4) The neurosurgeon I'm seeing specialized in non-invasive surgery on that specific part of the brain.

5) My husband and son have been taking great care of me. 

6) I have the ultimate excuse for anything. Words that have left my mouth recently include "If you don't buy me that fluffy pillow I'll tell the checkout person that I have a brain tumor and you wouldn't spend $14.95 to make me happy." And of course the classic Arnold Schwarzenegger classic throwback quote "It IS a tumah." 

7) My mom sent me flowers AND a fun Halloween wreath. It's never too early for Halloween.

8) Even my dog feels bad for me.

 9) I get to sleep a lot and not feel bad about it.

10) I haven't had any seizures (a common symptom of brain tumors.)

Always look on the bright 

side of life!

O Me! O Life!

O Me! O Life!

BY WALT WHITMAN

Oh me! Oh life! of the questions of these recurring,

Of the endless trains of the faithless, of cities fill’d with the foolish,

Of myself forever reproaching myself, (for who more foolish than I, and who more faithless?)

Of eyes that vainly crave the light, of the objects mean, of the struggle ever renew’d,

Of the poor results of all, of the plodding and sordid crowds I see around me,

Of the empty and useless years of the rest, with the rest me intertwined,

The question, O me! so sad, recurring—What good amid these, O me, O life?

                                       Answer.

That you are here—that life exists and identity,

That the powerful play goes on, and you may contribute a verse.

Help is on the way!

There's a quote floating around that I think most people have heard. It's misattributed to Einstein when really we don't know who said it first.
"The definition of insanity is doing the same thing over again and expecting different results each time."
Personally I strongly feel that sums up seeking out health care help perfectly. Each time I talk to or go to a doctor (or specialist) I feel like I'm just saying the same things over and over again, but expecting different results.

I messaged my primary care doctor late yesterday in frustration from the muscle weakness in my arms and legs coming back on. I had felt like it was getting better, but then it was back to being a bit worse. I messaged him asking if there's any way he thought the muscle weakness could be connected to my back problems. He messaged me back quickly (which I hugely appreciated) saying "Do you have pain in your neck and back?"

This blew my mind because:

1. YES!
2. I've had neck and back pain as long as I can remember (as in I literally saw my first chiropractor for back pain around age 5.)
3. I've told him many times I struggle with chronic back and neck pain
4. He requested a back and neck x-ray not that long ago
5. He gave me a prescription for 800mg Ibuprofen for back and neck pain
6. I mentioned it again when he gave me a referral to the first neurologist a year ago
7. I mentioned it again a few months ago when talking about exercise (as in "I'd love to do more, but it kills my back." To which he replied "I have back problems too" and that was the end of the conversation about my back.)

To be fair he's not the only doctor I've talked about my back issues with, so it could just feel like I talk about it endlessly when really I may bring it up once a year or so. I'm willing to give him that. After a bit more back and forth he suggested I try Physical Therapy. This was something I had in the back of my mind anyway for the RA, so I happily agreed. I think my words were "YES! I'll try anything!" 

When I got my x-ray results a few years back I made this chart for myself to see where the damage was. I'm a very visual person, so I found it incredibly helpful. My doctor called it "multilevel disease" which was the first time I've heard that.

On top of the lovely bladder infection (that's getting better by drinking tons of water and unsweetened, disgusting straight cranberry juice) I also had some painful sores on my tongue. I suspect it's from coming off the Plaquenil. My body's trying to grope its way back to homeostasis (or something like that?) 

I gargled with salt water last night and it's feeling better today. 

Can you say "cootie monster?" 

I have cooties.

Despite all my complaining, I'm actually really relieved. I'm glad that I have a doctor who I can message and he gets back to me so quickly. I'm glad he had a new suggestion (something we haven't tried yet.) I'm glad that he thinks my back problems could be contributing to my other issues and that it seems like he really heard me this time.

And despite what it sounds like my life is much bigger than just all of THIS. I'm making some lovely salmon and rice with salad for dinner. I've been studying all day for a test I have to take this Wednesday for my license. I had a lovely e-mail exchange with a friend today. I'm seeing some family for lunch on Friday (hopefully to celebrate my passing of said test!) And I'm rocking my favorite pajamas as I type. See! Not so bad at all.