learn from the animals

To say that life has been stressful lately is an understatement. We're in a war against Iran. We're lead by an insane, murdering nazi, prices for everything have gone beyond sky high. Now we're in the stratosphere. From food to gas, most people are struggling. Women and LGBT people are actively being targeted, assassinated and having their rights taken.  

I feel angry, fearful, panicked and heart sick. 

But I can't feel that way all the time. Like the bombed Lebanese smoking a hookah amongst the ruins of what used to be their home. Or the teacher playing music inside the remains of a destroyed school. Art, music, laughter and love will always drown out the hatred of evil.

So I have been...

Making art. Making time for friends. Taking care of my body. Keeping up with my medical appointments. Loving on my puppies and trying to help people I love not feel overwhelmed.

My son is constantly stressed to the max. I think COVID really broke him. Now he shuts everything down with a "no." He struggled emotionally before all of this happened, but it has really become worse. His anxiety and depression don't seem to be at all touched by his medication anymore. 

After a recent breakup (where she broke his heart.) I took him to a town close to us for a break. I found this beautiful park with a massive pond and we just sat there and watched.

 
As I soaked in the beauty of the spot I could feel my shoulders soften from up around my ears. The tightness in my chest relax like a rope being untied. My breathing become deeper and more fulfilling. Changes that I wasn't even aware I needed.

Nature is a tonic for these times. And I need to remember that. Hug a tree. Swim in a lake. Look at birds. Go slow with my dogs. Nature is the best teacher of all. She can be vicious. But there is also a lot of love. She is slow moving. Slow growing. She takes her time when she's healing. 

The animals teach us as well. They too go slow. Enjoy the little things (like eating the same food for breakfast AND dinner.) Make time for play. Show each other new things. The old teaching the young.

Spending time in my garden has also been helpful. I think of it as an "earth detox." Where I just pour out all my stress and worries into the soil where it is composted like dead leaves. 

I realize I'm very privileged. I can afford the things I need. I don't live in a country that's being constantly bombed. The people I love are still alive and well. I'm not rotting in an ICE detention center. I'm in a healthy, loving relationship. I have a lot of resources and options. I'm a rare minority in the world.

I can hold both things. Both can be true. I can be sensitive and aware of the horrors of our time. While also healing myself in art, nature and love. I can take care of myself with food and movement and also be aware of my tremendous privilege. I can morn the lost rights of women, the disabled and people of color, while also laughing with my friends. 

It's not easy and it comes with practice. I think my background as a therapist is hugely helpful. But every day I try. Luckily I have my two beautiful puppies to lead the way. 

 

Asked for Help

I've definitely been feeling stronger and having more stamina since returning to the gym. I walked the dogs yesterday. A walk that I could barely do a month ago. One that left me in a lot of pain was suddenly (dare I say) EASY for me. I've also been able to stand still longer. Something that was incredibly difficult for me just a little bit ago.

Back in November I was seriously worried I would need to use my big chair again. Not that that's a bad thing. But it just means my muscles were very weak and I was feeling like I might need the extra help. We started bringing my travel chair with us wherever we went.  

All of this is leading me to weight loss.
I'm not going to the gym for weight loss. But to be stronger, more flexible, keep my muscles from atrophy and for my mental health. It's a special time set aside just for me and my body.

But I'm also not stupid. I know that the less weight I have, the less strain on my already compromised joints and muscles. 

My food craving have been just horrible as well. You would think the more I indulged them the quieter they would get? But I really think the opposite is true. So I asked my doctor for help (now I sound like one of those awful commercials.)

 My beautiful $149 pill bottle 
(with personal information omitted)

But I really did though. I asked if I could try the new Wegovy weight loss pill. All the others until now have been injections. I did try Zepbound injection a while back. The side effects were awful. I just felt like my digestion completely stopped.

I'm hoping that the brand and delivery change will be helpful. So far I have noticed a bit more burping and farting. But then again I am old. Hahahah. My doctor said she only had one other patient on it and that they were doing very well. The pharmacy told me that I'm the first for them and I'm to report back how it goes. So I'm a bit of a pioneer.

 LOTS of warning labels, but this aint my first rodeo.

Last night I had bad dry mouth. But that could have been from my fan blowing right in my face or allergies. I get dry mouth a lot, but it hasn't been that bad since I took Baclofen three times a day for muscle pain.

I hate to say it, but at 3:30 when I couldn't go back to sleep I paid the Devil his due (Amazon) and signed up for a one month prime membership. Just so I could get my dry mouth tablets (Zylomelt) delivered next day. I needed them bad for tonight. I'm not doing that again. Although I HATE giving the big A any money, my health needs come first.

 My nightly ritual

I was a bit stunned to learn you have to take Wegovy in a very specific way. First thing in the morning with 4oz of water exactly. Then you must stay upright for 30min. You can't eat or drink anything while the drug is absorbed in your stomach.

I measure out my water the night before and set the bottle next to it. Right after I take it I set a timer for 30min and keep myself busy. Blog, walk the dogs, write in my journal, tidy up. Man when that alarm goes off I am READY for coffee and water.

You're also supposed to have tiny meals, the first one being bland. Like a dry piece of toast or crackers or something. I'm already finding myself eating very small meals through the day. I think that could have been one of my mistakes on Zepbound. I didn't change my eating at all, then all that food just clogged up my gut.

Like the pharmacy, I'll report how it goes. 
Today is day 3. 

 

Finding my Limits

My husband is away on a business trip and I felt a huge urge to cook last night. I had all the ingredients to make some things that I didn't think sounded very difficult. It felt within my wheelhouse. It didn't go great.

I managed to finish off what I had started, but only out of sheer stubbornness. I didn't know where my boundaries were when it came to cooking, but I sure found out the hard way. 

It was the first time I could feel my energy failing mid-work. I could feel myself getting more and more fatigued. And I'm not talking just my muscles. That feeling I'm used to. This was something new. 

It was a slow energy drain. Like a bucket full of water that has a leak. I could feel myself getting more and more tired with each thing I did. Even just standing looking at what was cooking. It was honestly a terrifying feeling. 

I felt scared that I wouldn't be able to finish before I had to go lay down. Frightened that I bit off more than my body could chew. Shocked that such a small thing could drain me so quickly. Regretful at my decision to cook so much and not just wait for my Mom to help me. And sad for myself that I was having that experience.

The whole thing wasn't all bad though. I don't know my limits if I don't test them. I also won't understand what's going on with my body if I don't pay attention. To have that very real feeling of my energy draining rapidly due to being overloaded, as scary as it was, is also helpful. My disease isn't just all about my muscles.

I told my husband the other day that I wondered if my need to rest mid way through the day is due to my doing so much when I'm awake. Especially physical things like showering, dressing, putting things in the house away, etc. I walked a touch over a mile yesterday just by doing these things. That's quite a bit for me.

The tricky thing about my "limits" is that they are constantly changing. What I can do today I have no guarantee of being able to do tomorrow. So that makes me feel in a bit of a panicked rush. I have a constant feeling of pressure to do everything that I can today because it might be the last time I can do it ever.

(I wanted to take a picture of some food that got dropped on the floor as I was cooking, but I didn't want my dog to get it so I hurriedly cleaned it up instead. I always tell my husband "It's not a day with me unless I drop something.")

Road Blocks

There are certain events in my life that feel like road blocks. Success will lead to one path and failure will lead in another direction entirely. I have such a road block in 16 days. My licensure examination. The culmination of my entire education and training will lead up to my success or failure at obtaining a piece of paper. But that piece of paper means a lot to me.

Every therapist I know has failed their licensure at least once. Most up to three times. But I have high expectations for myself. I don't want to keep shelling out $100 and putting my health at risk each time I go take that test. I want to be over and done with that part of my life for good. I hate loose threads.

So if I don't pass, I can pay money, wait three months and take it again. That's one path. Or I can decide not to take it. I wouldn't do that, but it is an option. If I do pass I'll be officially, legally licensed. FINALLY! I'm not planning on practicing clinically any time soon, but mentally and for my future it would mean a lot to me.

It would give me closure. Give me confidence. Open up more doors for me in the future and for money making opportunities. Make me feel like a success. Yes, it's important.

My world right now revolved around those 16 days.

What do I do?

I'm feeling worse every day. Both my muscle weakness and this horrid dizziness! Today I bought some Claritin as a last ditch effort to try and "solve" it myself. I think it's part of the myopathy, but I'm not against trying everything I can first. Literally the last thing I can think of is that it's allergies and my body is just having a two year old volcanic meltdown.

That would give anyone allergies, right?

What makes the dizziness better is sleep. What makes it worse is everything. My doctor is sending me to an ENT to rule out any kind of vestibular issue. Like I said... I'm open to anything. I even called Radiology today to see if they had any cancellations and could get me in for by brain MRI sooner than 11 days. Not that 11 days is that far off, but I seriously feel like each day is a big deal.

Remember The Hunger when David Bowie's character starts aging instantly? He finds Susan Sarandon, a specialist in aging, and tries to talk to her but she leaves him out in the waiting room. A few hours later when she comes back he's aged like another 40 years. Yeah... it feels like that. 

I know how you feel David. 

Along with the dizziness my muscles are getting worse. I feel a sense of urgency I haven't felt in a while. Each time I do something I wonder "Is this the last time I'll be able to do this?" I put something away in the garage today and randomly fell down. It was pretty scary.

So "what do I do?" What do I do when each day I feel worse? When I have to wait and wait for each doctors appointment and for answers that are few and far between? My insurance declined our appeal for the full genome sequencing that might have shown some helpful mutation. Or maybe not. Now we're waiting for new insurance to re-apply. So what do I do every day?

I get up. I do what I can. I skip what I can't. I ask for help when I need it. I keep calling doctors. 

SSDI is looking like it might be in the near future. 

I miss my work. I miss my old life. Today is just a "poor me" day and that's ok too. Tomorrow will be better. I hope. 

1 Week Out From Brain Surgery

My Meningioma will be removed in exactly 1 week from today. I have many feelings about this. "I don't wanna" is probably the most dominant thought right now. "You can just run away" is the second thought I have. Though neither are really feelings. The feeling behind both of those is fear. Though I can't really pinpoint what I'm afraid of? I have faith in my neurosurgeon and know how routine this is for him. I have great heath care and lot of support. Logically I even think I'll recover pretty fast. I think maybe the fear is coming from pain. Far more than death I fear pain and suffering. It's going to hurt and I'm going to suffer. There's no avoiding that fact. And that's at the heart of what makes me want to run away and go to Disneyland.

My husband and I at Disneyland last November. 
We totally drank the Koolaide

All this week I've been watching YouTube "ride throughs" of Disney rides. I found it ridiculously comforting. This was my favorite one that I found. It's the Pirates of the Caribbean Ride in Shanghai. I didn't feel bad watching it because I know I'll never go there in person, so it wasn't a spoiler.

I think there's many reasons Disney has been on my mind this week. It was a wonderful vacation we had there last November. We hadn't been in years and years and doing it without your kids is a completely different experience. We had a blast. So happy memories like that absolutely combat stress. That's one reason. Another I'm sure is escapism. Watching Disney transported me to another place that had nothing to do with work, family, brain tumors, mobility issues. You just sit and watch and let everything real slip away. That had a lot of appeal this week.

The only pain and suffering in Disney is inflicted by super cool villains with bitchen castles, swag and backup.

So I guess you could say my attitude about my brain tumor this week has been one of avoidance and indulgence. And I'm more than ok with that. During these super challenging life events I'm a fan of "whatever works." Whatever keeps me going through the day so I'm not crying is a win. Whatever gets me up in the morning to face another to-do list is victory. Whatever stops me from getting in my car and just driving away is an accomplishment. Whatever it takes. I can get through this. "I can go the distance." Hahah! I couldn't resist.

(that's a line from Disney's Hercules in case you're a Disney nube.)

Help While I Wait

The other day I received this text message that made me feel hopeful and excited. It meant that my spinal tap was approved and ready to be scheduled.

If there's anything I hate more than being sick, it's waiting and the unknown.

I called first thing this morning to schedule and was told that the message was sent by "mistake" and that I haven't been approved yet. In fact my insurance was saying that "The referral didn't meet criteria and the neurologist is having to re-submit." In English that means I could be in for a long wait. 

Aside from hating to wait and wanting to know 100% what's going on, I was hoping to get this all done before I start work again on the 23rd. That's less than 3 weeks. Now I have a feeling that's just not going to happen. Which means I'll likely have to deal with starting a new job while recovering from a spinal tap. Great.

Hopelessness and frustration visited me for a little bit this morning. But then like a Harry Potter patronous chasing away a dementor, I had a really helpful thought. Bob Marley's song "3 Little Birds" just literally started playing in my head. It was instantly soothing and helpful. 

Three Little Birds

Bob Marley

Don't worry about a thing
'Cause every little thing gonna be alright
Singing' don't worry about a thing
'Cause every little thing gonna be alright

Rise up this mornin'
Smiled with the risin' sun
Three little birds
Pitch by my doorstep
Singin' sweet songs
Of melodies pure and true
Saying', (this is my message to you)

Singing' don't worry 'bout a thing
'Cause every little thing gonna be alright
Singing' don't worry (don't worry) 'bout a thing
'Cause every little thing gonna be alright

Rise up this mornin'
Smiled with the risin' sun
Three little birds
Pitch by my doorstep
Singin' sweet songs
Of melodies pure and true
Sayin', this is my message to you

Singin' don't worry about a thing, worry about a thing, oh
Every little thing gonna be alright, don't worry
Singin'…

I also remembered some of my favorite RA bloggers and the excellent advice they had shared. Here's some of my top finds:

• RA Guy - Through the Looking Glass
• Ilana Jacqueline - 5 Ways You're Not "Living" With Chronic Illness
• Arthritic Chick - My New Wheelchair (the blog post I was never going to write.)
• The Mighty - 20 Gentle Date Ideas for People With Chronic Illness

These are very diverse articles in theme, but each one touched me in an incredibly helpful way. Each is encouraging and supports some central themes:

1. Your life doesn't stop because you're chronically ill. 
2. Work around what you can't do and do more of what you can.
3. Romance and love are powerful and healing. Don't stop that because of your sickness. (see number 2 instead.)
4. Don't live your life waiting. Waiting for results, appointments or other people's opinions.
5. Don't stop doing what you love just because it's harder now.
6. What you're going through is very hard. Find tools that make it easier (see number 2.)
7. Don't let other's opinions (including your doctors) define what you can and can't do. Listen to your wise body.
8. You have nothing to prove to anyone. Do what's right for you.

All of these are reminders that I still need on a fairly regular basis. I'm still very much adjusting to what comes easy for me and what is now harder. I have "gloomy days" to be sure. But I notice they don't stick around for as long as before. I also can see how this experience is encouraging me to grow in areas that are hard for me. Patience, trust, self empathy and mindfulness. 

Perspective

Life will always have its challenges. When they come along, regardless what they are, it's easy to let yourself get sucked in and for that challenge to become your life. This is most true with physical or health challenges. I'm fortunate to have friends who have much more serious challenges than I do. MS, breast cancer, spinal cord injury paralysis... Personally I find it difficult to balance noticing that I don't have as big a serious challenge as other people, while still respecting that I do still have struggles.

Today is a reminder to myself. A re-set on my perspective and a list of things that help me remember all the many many many pluses and blessings in my life.

#1) I worked my butt off over the last 10 years and now have 3 college degrees. I was the first person in my family to ever graduate from college (and I did it three times.) That's a massive accomplishment.

 This picture of my son when he was little always inspires me. 

He was scared of heights, but determined to jump off the high dive at our local community pool. He did it! His bravery continues to this day. Never let fear stop you.

#2) I've been to some amazing, inspiring places. Both here and around the world. Traveling the world has helped me remember what's most important in life. Kindness, openness, friends (and food!)

My husband and I traveling 2 years ago.

#3) The belief that I can do anything I want, I just have to want it bad enough. From graduation to getting a new job to being in a career field that I love. All of these have been incredibly challenging. But I did it! 

#4) Humor is everything. It is everywhere and easy to find. Enjoy it. Let it heal you.

My "study Jaws" got me through some stressful times in school

#5) I'm lucky. I have plenty to eat, a safe place to live and people who love me. I love the town I live in and am spoiled by my partner. He works very hard to give me a wonderful life. I'm very grateful for that. We're a good team.

Spoiled me with a graduation gift from my husband.

#6) I have a lot of people in my life who love me. Husband, son, dogs, family, friends... even my in-laws care! Remembering my huge team of cheerleaders (even when they aren't there all the time) is very helpful in keeping my perspective. 

Family

#7) Remembering what I CAN do! I can still walk, run (a bit), play, laugh, sing, yell, scream, eat, bathe, swim... and much much more. Instead of letting what I can't do (or what's hard) swallow my motivation I try and focus on what I can do, and do even more of it. 

Come on feet! Let's go!

#8) That I live my values. This is a fun activity called a "Value Card Sort." You go through 100 cards picking what words most reflect your values. Even when I'm feeling awful my values help keep me balanced. (Just click on the picture or link above if you want to print it out and do it yourself.)

I could honestly keep going, but I think you get the idea. Besides. I'm going to be late for my Zumba class at the gym. This time I'll keep it slower and I have my knee brace on for protection. I don't want another 4 day recovery process! But I'm determined to keep moving and trying.