PLEASE NOTE: this post contains graphic medical photos. Please do not read on if you do not want to see them!
The past couple days seem to have merged into one large day.
This Saturday my brother Michael was in town working a job for a very short time. It was so good to see him. He is just such a soft-spoken, hard-working good man. Because Muggs was in town, I also got to see my sister and her three kids who brought is Cinnamon Rolls from the Black Diamond Bakery. I pretty much sat with ice on my neck and listened to the conversations with my eyes closed. It was so nice to be around family. I was able to cuddle up in the softest blanket sent by my sister-in-law Lesleigh and brother Chris and Family. It was just a comfy day.
Wanna know the best part?! I got to take a shower! I may not have washed my hair as well as I could have but I was so afraid to pull a staple. I have the best mother who stared at the back of my gross head to brush and dry my hair. It felt so good to have a shower!
When I was a child my parents told me I had a serious disease. One day I marched into the Nurse’s office telling her I was really sick and my parents told me I had hypochondria. I just think I am a homebody and wanted to be near my parents. I admit sometimes I can be a little dramatic… most of the time I am joking. But these past couple many years I have had weird symptoms. Symptoms I thought for sure I must be making up because they are so broad but symptoms that were horrible. I just worked through the pain and discomfort because I had no choice. I lied through the pain and brushed them off making them seem small. But something was wrong. It felt wrong and it was frustrating. In my mind at times I was having a stroke. Or had early on set Alzheimer’s (minor hypochondria). But it didn’t stop me from going to work and working hard and doing a great job. It didn’t stop me from serving my seniors and working long hours to ensure they had a good quality of life. I didn’t want to complain more than having a bad migraine because I didn’t want people to think I was “faking it” and I know some people suffer so much more. Maybe one to two years ago I decided I deserved to feel better. I went to a neurologist, tried more medications and still did not have relief. In fact over the years I had tried 35 different medications without relief for my migraines. Last December I had 2 MRIs and 2 more in February. No tumors we’re found and I was grateful.
But, these symptoms?
-Migraines- the worst headaches, oh, the pain… enough to make me cry. It is so hard to explain and unless you have felt it you might not know. The pain and headaches that could not be controlled by countless medication trials.
-Neck and shoulder pain- they always hurt. Always. Lidocaine patches, medications, muscle relaxers don’t touch the pain or loosen the muscles. Chiropractic care and PT made it worse.
-Balance, dizziness, and sleepy arms- Daily I walk into walls. I can’t help it. I just accepted the fact I am a clutz. Recently I passed out at work. Missed a couple steps in the Harry Potter closet from blacking out. I can’t sleep at night because my arms, legs, and shoulders fall asleep off and on ALL night long.
-Swallowing- sometimes I literally forget how to swallow. It is scary. I panic when it happens. I can not remember how to swallow. The muscles do not work.
-Extreme Nausea and horrible gag reflux- I throw up a lot. I am nauseous a lot.
-Word loss- sometimes I forget proper nouns. When my head hurts a lot of words just disappear. Names of family and friends I have known my whole life. Names of places. Just gone.
-Memory Loss- there are holes. A lot of holes. Like years of my life just disappeared. (The last two symptoms are what really made me think I had a stroke or Early Onset Alzheimers).
-Insomnia- this might be genetic though. I can go weeks with 2 hours of sleep a night. It is miserable to be awake when you just want sleep.
-Vision problems- eyes feel like they are popping out of my head at times, seeing stars frequently, night blindness.
Weird symptoms, right? And symptoms from my head to my toe. They do not seem like they go together. It literally made me feel like I was crazy. Like I had a mental disorder where I was making it up and feeling these pains and miserable symptoms.
But the MRIs did show something.
They showed a Chiari Malformation. Something I probably had my whole life and just lived with.
Mayo Clinic defines it as “a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.”
In February my neurologist suggested I see a neurosurgeon. I had an appointment scheduled the middle of March but CoVid happened and my priority was keeping my oldies safe. The beginning of July they called to reschedule. July 7th I met with the neurosurgeon. He said no surgery. July 8th he called me back and said after looking over imaging more closely he recommended surgery. I had a 3rd virtual visit with him on the 10th and on the 24th met him in person to schedule surgery. To say it was a roller coaster ride in July is an understatement. A lot of emotions I will write about later. Although my brain tissue herniation is relatively minor, the back part of my foramen magnum is putting pressure against my cerebellum and pushing it into my spinal cord. The is very little to no cerebrospinal fluid flow between the posterior foramen magnum.
It is kind of a relief to have some sort of an answer. So treatment? August 20th I have brain surgery scheduled. The operation will remove part of my skull near the foramen magnum to make room for my brain.
I like to explain it that I just have a big brain.
Hopefully these next couple weeks I will be better at recording my feelings. I want to remember conversations I have had the past month.
If you haven’t heard about it, the Seattle area is experiencing a snow-ocalypse. My town is all HILLS. Every direction I go it has a hill making it near impossible to get anywhere, let alone out of my driveway. I work at a memory care facility as a life enrichment director and help provide care for these sweet seniors. We can’t just stay home for work. Many of us packed to spend the weekend at work knowing not everyone would make it. WAY TO BE PROACTIVE! I not only packed… I PACKED. On my day off I am currently sitting at the front desk making stickers for my planner watching the snowflakes fall. I think I packed enough supplies to get through spring in my planner. I am here for the long haul.
There is just something so stress relieving about doing creative things. I love that I now have the desire and time to do this again!
Did you go Black Friday shopping? Every year I make one stop: Fred Meyer. I buy 5 pairs of boots and socks and call it good. My yearly boot shopping tradition makes me happy. My local store doesn’t always have my size. I think I only purchased one pair of boots this year that was my size. I will have to drive to the other Fred Meyer stores this next week on a hunt. When I commuted to work I would leave 2 hours earlier on my search.
Shoes make me happy. As my mom would say, “You need another pair of shoes like you need another hole in your head.”
I slept horribly last night…. HORRIBLY. I woke up at midnight, could not relax and just lay awake. When I finally started to feel drowsy I put on my meditation/hypnosis app. It was talking about imagining a feather… any feather… any size, and as I would breathe in and breathe out, it would rise and fall. Of all the feathers I could imagine, I imagined turkey feathers. When I was a kid we raised turkeys as an “experience”. I remember my dad saving the turkey feathers and coloring the ends black to use for Cub Scouts. Imagining a big turkey feather with the end colored black, as I breathed in and out, was strangely comforting.
I am the first to switch my work schedule for others. I feel if I do, when I really need someone to fill in for me, they will… at least I hope it happens. Not having my regularly scheduled days off really throws off my groove sometimes. It means I have to do most of my cooking for the week Friday after I get home. To make matters worse, I left Kirkland at 7:45 and because of an accident I didn’t get home until after 9:00…. Soup is in the crockpot and half of one dish is made, but it is almost 11pm now. It is so much easier to get it all done and not worry about waking up the next day for work. But, I am dedicated to this new lifestyle and will do it if I must.
I am very much of a note-taking, pen-hoarding, checklist kind of gal. I love marking things off a checklist… so much so that I will write things on my list at the store just to cross it off. Ridiculous, huh?
I have been really good at recording and journaling my food the past 30 days (missing maybe 2 or 3 days). I wanted a creative, colorful, and fun way to record the next phase of my get health journey. I created the above stickers to allow myself to check things off. So far I love them.
Something else I love? My water flosser. I am not the most religious flosser. My coworker suggested ordering a water flosser (as I was sending her office supply recommendations). I use it 1-2 times daily and floss maybe 4 times a week with dental floss. I sometimes add mouthwash to the water flosser and was laughing at myself tonight and I looked in the mirror upon completion…
It makes it easier to be healthy when you have people in your corner. I have not been drinking enough water. This was my coworkers solution. We each have bright pitchers of water and are refilling it for each other. Service with a smile 🙂
I have always wanted my own domain. So I did it! Emese calls this the year of Laura. My New Year’s Resolution this year was to do things for me and take care of me. I am getting a late start on it, but I am doing it. I am eating healthy and feeling good and can’t wait to continue on my journey.
Now onto my problems. I need to learn to cut my recipes down when I am cooking. I packed food for 7 days and this is still what I had to freeze.
That is probably 15 bags of butternut squash chili and Ground turkey cauliflower stir fry. I think next week is going to be leftovers week.
Oh, and my brake fluid is leaking. Ain’t that something?
Laura Suzanne 