Things in the way (AKA: LIFE!)

Life will always throw distractions in the way. Unfortunately I'm part bird, so I'm easily distracted by the shiny and new. I'd much rather play on my Instagram gardening page apparently then focus on the really important.

My hobby - rescuing plants from our local dumpster. 
It's so rewarding!

In fact I've been feeling SO incredibly distracted lately that I had to sit myself down and make a list. Here it is. It's called "What Matters to Me."

• ·     Money back from old gym
• ·     Re-Join new gym
• ·     Lose weight
• ·     Do Yoga again
• ·     Sell the eBay stuff to make trip money
• ·     Re-activate my MFT license (take needed CEU’s)
• ·     Help Papa get into VA home
• ·     Stay on budget

That last one is rough. I'm not known for keeping a close eye on my budget. Especially with the cost of everything rising 20% recently. But I want my husband to be able to retire as soon as possible, so this needs to become important to me. 

I will always make time for art.
My latest ceramic piece. A little garden Goddess.

Getting rid of things I'm not using and letting them go to people who will love and use them is why I'm selling some belongings on eBay. It makes me feel good that something I'm just holding onto will instead be important to someone else. I'm happy there's a way I can do that and also make a little money. That matters to me.

I miss my old gym terribly. Luckily so does my mother. It's going to be hard for me to get my money out of them. Sadly I can't afford both the new membership and for the old gym to keep my money (see "stay on budget.") Good thing I'm not terrible at getting what I want. I hope I don't have to escalate things with them though. That takes time and energy I'd rather spend at the gym.

Margo and Max will also always get my time and attention.

In fact, they get the most of it.

My two toddlers.

In the meantime there's nothing stopping me from doing Yoga (other than myself.) I managed to do "Chair Yoga" once this week. I'm going to do it again today. I did it along with a video I found on YouTube for people with Cancer. It was excellent. Just what I needed to get me back into Yoga without injury or too much pain.

Next Sunday my mother and I are going back to Oregon to get my grandfather and move him back to California. He's no longer able to live independently and his rent is going up again to a place where he can't afford it anymore. He does not want to go, so we have a battle on our hands. It won't be a "jolly time had by all at the beach." But family matters to me a lot, so there we have it. It will also take as many people as possible to help my Papa through this very hard time in his life. Transitioning to a home.

So there we have it. What matters to me and where I need to be focusing my time. Not that I still won't spend some time on the "shiny" and "new." But these can still be my anchors of attention.

Alone Time

The first time I shopped alone for fun since I can remember!

How important is "alone time?" I think it varies from person to person. As a creative soul I've always craved a lot of alone time. That's something I didn't get much of when I was very ill. I was always at the doctors, asleep or with someone. It doesn't count when you're asleep by the way.

Now that I'm managing my diseases I still don't have much alone time. It seems I'm always with my husband, adult son or mother. My husband only works away from home two days a week. There almost always seems to be something to do on one or both of those days. A medical appointment or gathering or some kind that leaves me "not alone." 

When I am alone I am very good at filling my time with "busy work." Things that need to get done but usually aren't important. Laundry, watering the garden, walking the dogs, that kind of thing. Day-to-Day tasks. Not making art or working on my CEU's. I can fill days and days of time this way. Making medical appointments is a particular specialty of mine.

As someone who has never lived alone I'm pretty used to be around others constantly. Kids of course are rarely alone, so I didn't have too much time by myself even though I'm an only child. There were always friends over, parents around, grandparents, other kids, teachers, classrooms full of kids... you get the picture. 

Solitude is welcome. I'm working on practicing savoring my alone time more and making the most of it.

ADHD Follow Up

I had my long awaited psychiatrist appointment yesterday for my ADD. I didn't care for her very much, but I'd still say it went well. 

It ended up being a tele-visit which wouldn't be my first choice for a full assessment. Whatever platform she was on kept having buffering issues and I lost visual on her frequently. Not super professional. She was very serious and didn't seem to care much about building rapport with me. 

At first she also took issue with me having my husband in the room. She said "I need to ask you some very sensitive questions." Well, we're married, so there's nothing he doesn't know about me? It was very strange. I would openly talk about anything in front of my husband. 

This kind of attitude just perpetuates stigma around mental health struggles and I hate it. We all need to be comfortable talking about our mental and physical health with people we love and care about. Especially those closest to us. Not just closet ourselves off. 

So, you can tell I felt strongly about that.

What I did like about her is she was very thorough in her questions and she wants to be cautious with medication. I appreciate that. She's consulting with the head of her department because she doesn't know much about mitochondrial disease and I'm on some medications that can make dosage challenging if I'm going to try some ADD medication.

The medications we're considering are Guanfacine, Strattera and Ritalin. She's not sure about putting me on a stimulant because of my heart. Another could lower my already low blood pressure and the last could cause my vertigo and migraines to be worse. Greeeeeaaaaat. She tried to reassure me that heart attacks from Ritalin are very very rare. I told her I don't like to play the "rare" game.

So I'm not sure I'm going to end up taking anything for my ADD. We'll see. I'm in no hurry. I have a follow up with her on Tuesday.

I'm a Walking Miracle

Sometimes I get so caught up in the day-to-day of things that I forget what a miracle I am. To be walking my dogs, making plans for a vacation, camping with friends... all of these things are joyous moments that I thought were no longer in my future.

The little things too. Doing laundry, making my bed, going food shopping, riding my bike. Nothing I would have been doing this time last year. 

I feel like the most fortunate woman alive. To be able to be in my body, in my life, full-on once more. 

Both of these pictures mean a lot to me. I'm doing things I hadn't done for years. Walked on the beach and climbed stairs. Both are momentous occasions for me.

I take nothing for granted and am thankful for each day that I have my mobility. 

Sleep

I rarely sleep well on my own. Usually pain keeps me awake till the wee hours in the morning when I finally succumb. What did people with insomnia do before smart phones? Watch TV I guess.

Typically I take one Tylenol and one Tylenol PM. If I take two PM I'll sleep all through the next day too. I'm very sensitive. That's usually enough to dull my pain so I can sleep. The down side is aspirin is very constipating. So is many of the other medications I'm on. You see the problem. 

I take Lyrica and Cymbalta for my pain. Lyrica helps with my "stocking glove neuropathy" that is especially bad at night. Cymbalta helps with my all over muscle pain. The two together are barely enough to keep my pain down to a 4-6 level. Meaning below "grit my teeth and pant while wishing for sweet death" level. I feel it's there every second of the day. I'm never not in pain.

This leads to fatigue. Pain is very exhausting. When I don't sleep well on top of that it just makes everything much worse.

I still get tired around mid-day and give in to my urge to "rest." Although typically I only rest for two hours. It used to be around four (before I changed to a mostly short chain fatty acid diet.) I sometimes don't rest at all, but it's rare. 

I am happy to report that I no longer suffer from the daytime crushing fatigue that I used to get. It was horrible. The kind where I just couldn't stay awake and would instantly crash out the second my head hit the pillow. Like a mini death or coma. Not sleep.

Looking back I have always been a tired person. Even a tired kid. I would fall asleep at school all the time. At my desk. I'd be caught drooling or snoring. I would sleep walk and talk. I remember waking up a lot. I've also always had a very busy sleep. Tons and tons of dreams. Not restful feeling sleep hardly ever. My mother was the same. Even my great-grandmother would sleep walk and talk.

My grandmother would take over the counter sleeping pills frequently. I don't blame her at all.

My son also sleeps terrible. He always has since he was a boy. We have a saga of crappy sleep. I'm just happy my lifestyle allows me to sleep in frequently and rest during the day as much as I need. Not many people have that luxury.

Food Addiction

It's very hard for me to pinpoint when food became my drug of choice. It wasn't always so for me. I think it was when my son was first getting diagnosed with Autism and my husband was working incredibly long hours. That feels right. 

When hard things happen to people it's common to form an addiction to cope with the stress. Drinking, drugs, gambling, sex/porn and food can all become addictions. But food is the hardest one to overcome because we can never just stop eating.

Cheers to not over eating. 

Enough "we" and back to "I." I struggle with portion control, eating too infrequently and choosing high calorie foods. I adore fast food, even though I don't have it that often (for an American.) I would happily eat two box's of macaroni and cheese for dinner every night if I just let myself totally indulge. 

A dream day of eating for me with no consequences would be doughnuts for breakfast, Taco Bell for lunch and mac n' cheese for dinner with some kind of pie or brownie for dessert. (((GASP!))) Just awful.

I never really had a big sweet tooth until recently. Sugar is absolutely a drug. The more I have the more I want. I think about what I'm going to eat next while I'm eating. I love to watch cooking shows while I eat so I can watch other people eating too. I'm incredibly suggestive to food. If someone even says something like "ice cream" then I'll want it terribly.

This is hard, serious work.

My "serious" face.

I've been fighting my food addiction for about 25 years now. I do well for a little bit, then go right back to what I was doing. The wonderful thing about overcoming something is that you never run out of chances (while you're alive of course. Then, game over.) I don't want to lose weight to conform to some kind of idea of what I should look like. I want to lose weight to hopefully lesson my pain. And because being strong feels really good.

Many members of my family also have food addiction issues. About three generations worth. Those who didn't had other addictions. Is being addicted to something part of being human? Are we just unable to resist temptation? What is that about?

Here's what I did TODAY to help myself and heal myself rather than hurt myself.

• I used my new food tracking app.
• I put my FitBit back on.
• I walked the dogs.
• I played with my dogs.
• I ate thoughtfully and carefully.
• I ate when I was hungry.
• I made a healthy dinner this morning so it's all ready for us. 
• I bought some healthy snacks to try.
• I wrote about my thoughts and feelings.

I know how to feed my dogs.

But it's much harder when it comes to me.

The Other Thing...

Mitochondrial Disease and Migraines take up such a huge part of my life, my time, money, resources and attention that it's easy for me to dismiss other things going wrong with my body. That troublesome hip. The ankle that wants to roll. And my ear that plugs up each time a storm rolls in.

I've had Eustacian Tube Dysfunction for about 10 years now. However, it is progressively becoming more of a problem. Any time I have a change in altitude or barometric pressure my right ear plugs up and refuses to un-plug without drugs. Often it becomes infected and I'll require a course of antibiotics. Obviously I have to go to Urgent Care to get the help to fix it. The last time I went they told me I really should see a specialist.

Fine... They were right. 

I scheduled an appointment with my ENT. It went very well. Even if the scale must be broken because no way can I weigh that much today.

We went over my options to treat this ongoing issue and settled on surgery. There's a brand new procedure they've been doing for only a few years. It has a 65% chance of success. I'll take it over a tube in my ear.

The other thing that has popped up is a tumor on my right boob. Seriously. I always have issues on the right side of my body. It showed up in my recent mammogram waving "Hi" with its 3mm body. I have to go back in two weeks for a second more detailed scan.

Bodies are just like houses. It's always one thing or another. At least my sink isn't leaking (yet!)