The importance of fun!

It's Halloween today and even though I'm not dressing up and going out I am still finding ways to have fun. If I were to dress up, this year I would go as Frida Kahlo. But not the super colorful one people usually dress as. Her more serious black mood like this:

I can relate to her disability and suffering but how she still struggled to express herself, her sexuality and her creativity. In fact, yesterday I bought two canvases and I want to get back into doing art. Any kind of art really. Just something fun to do to express myself and keep mentally active. 

Having fun and playing is a big deal in our house. We own a lot of games and many things others would consider "childish". Children's books, pinwheels, shadow puppets, Disney movies, stuffed animals, coloring books and crayons all have a happy home with us. And even though I don't use them all the time, just having them makes me smile. 

Even going to Target yesterday and picking out these bubbles to hand out to the little knee biters that will come knocking tonight was fun. I wheeled through the store picking out just the right thing. I like giving out toys instead of candy. Candy is gone in an instant, but a little something they can bring to school and share is better. 

No matter what the next day will bring I will ALWAYS find a way to have fun. (And like I suspected yesterday, I'm feeling much better today.)

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. 

Plan Kick Ass - Day to Day

"What's going on with Plan Kick Ass?" I'm glad you asked! It has been a little over a month since I did an update. Here's how things stand. 

Food is good.

I don't always have the spoons to make stuff from scratch.

Tomorrow is another day.

Here's the areas I'm doing well at. Eating fresh and local I think I have down. I'm also eating much more veg than I was! I make a smoothie when I can (like I need to make one today). I'm stretching at least once a day, typically a few times. I have "naps" down solid and I really reduced my work week. Ha ha.  

Bruce is a napping PRO!

I've been asking for help when I need it, but my husband and mother usually want to do things for me before I ask. That makes me stubborn and actually LESS likely to ask for help. I need to talk to the two of them about that. 

I live in a food oasis where we have tons of fresh, local, delicious food constantly available. And let's face it. Food and eating it makes me happy and I need a lot of "happy makers" right now.

Our beautiful Farmer's Market on Saturdays

Roasted fall veg (that my husband wouldn't touch)

Here's where I'd still like to improve.

• Eat smaller portions.
• Eat more seafood
• Eat less sugar (No, it doesn't help. That was a fluke day)
• Eat less dairy
• Back to no soda (As soon as I finish my last Ginger Ale)
  

Most things I try (power drinks, sugar, Magnesium, etc...) seem to work great for a little bit, then taper off. So I'm not doing the power drinks regularly because there's just too much crap in them for what little I get back anymore. 

Roasted chicken (that my husband enjoyed)

On the medical side my doctor is sending me to an ENT to rule out any vestibular causes for my dizziness. I'm willing to try anything because not being able to drive BLOWS!

The in-between times

So much of having a chronic illness is waiting. Some people wait for surgery or chemo treatments. I wait for brain MRI's, doctors appointments and testing.

But my life can't just be ALL about my illness(s). So what about the in-between times? In-between the doctors appointments, medical testing, waiting, symptoms trying to take over... what do I do then? 

Well, one of the things I like to do is keep up on my henna head. This time I went to my mom's hotel room and she did it for me. It was much easier than getting all the little spots myself and it came out lovely. 

Another thing I do a lot of (as much as I can really) is rest. I try and nap every day. Usually between two and three and a half hours. And no. It never effects my night time sleep. I sleep like a rock (usually). Aside from my puppy I also snuggle my giant stuffed shark "Bruce" and of course, my husband. 

I also find small things to lift my spirits. Having bright fingernails is one of those things I like to do. I used to have a tradition of painting my nails in a sparkle polish before any big test. I used to tell people "It's impossible to feel stressed with sparkly fairy nails!" That's a motto I still hold to.

On that note, I'm going to take a nap and paint my nails.

Next up... "Plan Kick Ass" update. 

Accomplishments

When I was in school an accomplishment was finishing a major assignment or passing a tough final. When I was working an accomplishment was making a breakthrough with a client or making my bonus. Today an accomplishment is doing a load of laundry or watering my plants. 

Accomplishments are necessary goals that keep me feeling good about myself, my skills and my life. Even though those goals have changed drastically over the last month, they're still important for me.

Here's a few examples of what I consider to be accomplishments this week:

1. I turned in my application for my town's disabled community transit and got my card. This gives me more options to get out now that I'm driving much less.
2. I asked my doctor to sign off on some important paperwork for me... and he did! 
3. I got my first SSI disability payment. That was an intense process and I felt proud that I accomplished it. 
4. I made it to the mall with my mom (she drove).
5. I made dinner last night. It was hard, but I did it!
6. I walked my dog twice this week with my chair.
7. I talked to my doctor about my new symptoms in person.
8. I made an appointment with a new neurologist and scheduled my next brain MRI.
9. I shaved my legs.
10. I went to the bank (like INSIDE!) and stood while I waited.

Disability, Dizziness and Doctors

It has been one week since I've been out on my three month medical disability leave from work. Luckily I've had my mother visiting to distract me, otherwise I think I would still be crying almost every day. I dream about my work and miss it constantly. Unlike a lot of people I loved my job and I loved working full time. I do know that I literally did everything I could to keep working. My body just couldn't manage it right now and that's ok.

I saw my doctor about my dizziness, headaches and foggy headedness. He ran some tests and found that my thyroid replacement medication was too high a dose. Today's my first day on a lower dose and we hope that's the cause. 

I also went to my eye doctor yesterday because OVERNIGHT my vision got worse, especially in my right eye. Everything bad seems to always start on the right side of my body. No idea why. He confirmed that in the eight months since I saw him both my eyes have gotten worse, but especially my right eye and especially close up. He said it could be from the Baclafan, or it could be from the myopathy. No way to really know. 

But hey! At least I don't have to take time off from work to make all these appointments. Right? Now I get to be a full time patient. 

Speaking of, I also get to schedule my next brain MRI today. I have the follow up from my brain surgery soon and my primary care doctor also wants to rule out anything scary going on causing the dizziness. I appreciate his attention to detail. 

Lastly my husband and I have been talking about getting a wheelchair van early next year. Luckily there are a lot of options where we live, including a lease. The gas milage on them is terrible, but it would give me a lot more freedom (like all my other tools). I want my life to stay as big as it can. Using my big chair is not only more comfortable, but it saves me a lot of energy over other devices, which means I can be out more doing the things I love!

Stay tuned for car shopping. Which is more fun than a brain MRI. 

When did Myopathy start?

I've always placed the start date of my muscle weakness April 26th 2018, 13 days after starting Plaquenil. My husband has felt that it was the Plaquenil that caused my Myopathy. But I had a memory the other day that places the real start date MUCH earlier than that. 

I remembered being at Disneyland in November of 2017 and feeling like I was being especially tossed around. I even told my husband that I felt "weird," like my muscles weren't holding my body in place like they should be. Upon looking back I'm wondering if that was my first sign of myopathy.

Not having a very specific diagnosis is frustrating, not having a clear cause is also frustrating, but now not even really being clear when it could have started? Yes. That's hard.

Is it just a genetic mutation that somehow got turned on? Was it the affects from my brain tumor that I'd had since at least 2015? Was it from the Latent Tuberculosis or the medication used to treat it in 2016? Is it from the Plaquenil I was put on in 2018? I may never know. 

Having a chronic illness often means endless doctors appointments, new symptoms that sprout up literally overnight and having more unanswered questions than answers. I'm slowly learning how to live in this zone of "unknown".

I may not know exactly when my muscles started breaking down, but I do know how it rules my life today. I know I can't dwell on what I used to be able to do yesterday that maybe I can't do today. And I can't focus on what I may not be able to do tomorrow. I live each day as best I can and feel grateful that I'm not in this alone. 

No Homeostasis

In my life right now there is no such thing as homeostasis. I've talked about it before how my health is a constant moving target. That reality can lead to a major increase in stress if I'm not careful. And not just for me, but for my whole family.

Simple things like spending time together, eating together and listening to each other can be very helpful at decreasing my stress. Here's a few other things that also help:

My mom bought me a Wonder Woman outfit and it was a big mood boost. I do feel pretty wonderful for getting some laundry done or even just trying my best today. So maybe there's no such thing as homeostasis for humans? Maybe the only thing constant really is change. Perhaps all we ever have is the present and we have to just pay close attention to it and savor the moment. 

Another Big Decision Made

I've been having increased dizziness and headaches. Over the last three months they have been getting stronger and the dizziness more debilitating. My original work plan was to go down to just two days a week doing telehealth from my home. This Tuesday was supposed to be my last day in my office. Little did I know when I left that morning that it would be my last day period (at least for a while). 

I really thought I could manage to still work two 10hr days a week and just recover the rest of the time. But as anyone with chronic health conditions knows, sometimes our bodies have other plans. It was at about 10AM that I realized this "new plan" wasn't going to work. I felt exhausted, was dizzy and had a headache so bad that I couldn't focus on what I was doing. 

I also realized that I had been trying to "keep it together" for my clients, but really cancelling them as much as I had to with little to no warning and rescheduling was likely harder on them (and our support staff) than just taking a three month disability leave.

So I pulled the trigger. I went home, cried my eyes out from frustration, guilt, anger and just not feeling good. My husband come home from work mid-day to comfort me (that was after I called him from my office bawling my eyes out over having to go home). After that I notified everyone important at my agency that I had to immediately go on a three month disability leave. I got a few "get well soon" responses, but most of it was just radio silence.

Silence is a horrible feeling to be greeted with when I tried as hard as I could to just keep pushing and to help as many people as possible. Pushing myself was what I did all day every day that I worked (sometimes even at home). But I just can't push myself anymore. My body has had the final say and it's "NOPE!"

Now what's next?
Applying for State Disability has taken a lot of spoons. It's very confusing and I don't know what I'd have done without help from a disabled friend of mine. My student loans have also been frozen because I can't work right now. So that's two big things off my plate. 

I'm doing small productive things, but mostly resting. And of course attending the never ending medical appointments. I have one Monday with my PCP to talk about the dizziness. He gave me Scopolamine transdermal patches to try, but they did nothing. I picked up some Dimenhydrinate (Dramamine) 50mg today and will try taking 100mg tomorrow to see if it helps at all. 

I'm still processing this big change too. No more office. No more helping clients (right now). No more early work days. No more dressing up. It feels like it did when I got my first rollator or wheelchair. A big step into disability. 

You look so healthy!!!

Overwhelmed

This week has been insane. I'm about to see my mother face to face for the first time in 15 years, my temporary disability was approved, my husband is going away for the weekend and I cleaned out my office to move 100% to working from home. 

Usually any one of those things would set me into a tailspin of feelings, lung crushing anxiety, nights of insomnia and nightmares, cold sweats of insecurity... but oddly enough I'm actually coping. Coping really well. ON TOP of working 30hours this week. Not easy to do feeling how I feel even during a stable week. But to do it THIS WEEK? I seriously deserve an award. 

"Overwhelmed" is almost as familiar a feeling to me as "frustrated". So what's keeping me cool this week? I think it's the following.

1. I'm sharing my feelings. I'm letting my loved ones know that I'm feeling sad about giving up my office and mad that someone I don't like will be moving in. I worked very hard to get that office and it symbolizes a lot to me.
   
2. Awareness. My office is just that... a symbol. I'm the one who made it special. My job is just changing, not ending.
   
3. Asking for help. I've been communicating with my husband about the disability process and asking for help with it (like the whole evil math thing).
   
4. Not being impulsive. This is huge for me. I tend to do things I don't like quickly just to get them done. But I'm not rushing with the disability information. I want to understand the math and be clear on my options.
   
5. Resting. I'm not putting everyone and everything first. I'm coming first this week. What I want and don't want. What I can do and can't do. I'm going to bed early and resting whenever I can. That has been helping a lot!
   
6. Mindfulness. Staying focused on the present moment. I remembered the other day that I am a "human being" not a human doing. So be. Don't project into the future or the past. Time travel is not needed here. Just my attention to the right now. 

I'd be lying if I said I was a chill Buddha cucumber. But I'm also not a distracted wreck. And I'll take that!

Frustrated

I think that's the number one word I would use to sum up my chronic illness. "Feeling frustrated" a good majority of the time. 

A big cause of that feeling comes from the moving target of my kind of illness. I literally never know how I'm going to feel, what I can or can't do, from one second to the next. I can kindove have a plan. I can guess. I can take what I think will be preventative measures, but there's zero knowing where my body will end up.

Case in point last night. I was coming off a hard weekend where my body just needed a lot of TLC and rest. I missed out on a lot of fun things we had planned (= frustrating). Then last night something was wonky with my breathing all... night... long. Was it asthma? Allergies? My lung muscles not working? Too much dust in my room? Heck if I know. I just had a very hard time breathing and slept like crud.

I'm a problem solver by nature, so this morning I look up tips for night breathing and find my pillows are long overdue for a wash. Not the case... the pillow. And my favorite soft one that I keep by my face (along with my stuffed shark) haven't been washed in at least a year. Ok, good place to start.

Me and my buddy Bruce

Then how about using my inhaler more? I thought I already was, but can't hurt. I already have an air filter in my room, but is it positioned right? And how about that throw rug, does it need a wash? And here we have my entire day.

Now my whole Monday has gone from everything I had planned on doing to trying to make my room as "lung friendly" as possible. This is life with a chronic illness. And it is very frustrating!!!

Rest and Play

Last week my husband and I celebrated our 25th wedding anniversary. Although we call ourselves the "Adventure Buddies" we were more than ready for some serious rest. We drove three hours from our home to the coast for some fresh air, good food and plenty of relaxation.

I fell in love with this swing on our patio, even though it made me a little dizzy. I think I need one at home now.

The hotel we stayed at, the Bernardus Lodge and Spa, had a beautiful garden, delicious restaurant and was completely wheelchair accessible. It was just what my body and soul needed.

I'm learning how to have "relaxing adventure" lately. Case in point, the hotel had a convertible car that we were able to "borrow" for a lovely coastal drive. It was a lot of fun, but an easier adventure on my body than say, a long beach walk, which is something we would have done instead in the past. 

Some "adventure" takes money, but other things I can find for free. Like this fun, organic farm stand we stumbled upon on our way home. They had a cute area for "kids" that I took full advantage of. I spent my muscle spoons for the afternoon getting in and out of this GIANT adirondack chair and it was totally worth it. I felt like such a kid!

For me play is just as important as rest. If I spend too much time just "adulting" I'm one unhappy lady. 

Of course one of my favorite ways to rest and re-charge is to snuggle with my sweet girl. 

My husband and I also "play" with (gasp) our friends! We belong to a local group of tiki lovers who are as child-like and playful as we are. We try to make time at least once a month to dress up and hang out with our buddies. 

Life is a balance and I'm still trying my best to find the perfect mix of work, rest and play. 

(** I received no reimbursement for my mention of Bernardus Lodge and Spa. But if they'd like to hook me up in the future, that would be dandy!)