Junk in my trunk

I am a woman with a lot of junk in my trunk. Thick thighs, legs for days and a tummy as warm as a pet Shar Pei. But I'm not happy with my weight. My weight has gone up and down with the same 20lbs for about 5 years now. And I have felt like I wanted to lose close to 100lbs honestly for about 20 years now. That's a very long time.

I'm trying to remember when the last time was that I was content with my size. I think I must have been around 10 years old. That's very sad. 

When I was healthy I used to try and focus more on my strength and less on a number. I did Zumba, swam and lifted light weights at our local gym. I also gardened a lot. Like hard core digging mulch piles kind of gardening. Not delicately planting flowers on my hands and knees. I would say I was "moderately" physical. I even tried running a few times.

Now days I do as much as I can when I can, which sadly adds up to very little. That means what I eat needs to count. Also with my disease comes nutrient use issues. My body doesn't process energy well. I've been told to eat little, often with a focus on protein. But do I listen? Not really.

My muscles need a break. My weighing what I do does my struggling body no favors. I know that. But over eating is a very strong addiction. I love food! I love to eat. The more the better. If I have a small plate of food in front of me I feel confused, irritated, deprived, annoyed, anxious... If I have a lot of food in front of me I feel happy, taken care of, comforted, nurtured, spoiled... Food has a lot of emotional connections for me. It's not just "fuel" for my body. 

Portion size isn't my only challenge. Eating frequently is also hard for me.

Looking back at my other food blogs I feel like I had the enthusiasm in spades. The planning was definitely there. So why do I keep failing at this one thing?

Unlike other addictions you can't just stop eating. This makes it harder than most to control. To completely change my relationship with food is obviously a gigantic struggle. Do I minimize my relationship with food and the level of my addiction? I think so. I can make all the positive slogans, lists and plans that I want to. But until I tackle my base level relationship with food I just won't change.

My lunch today.
I'm trying again.

What Keeps Me Going

 

Did you know that the suicide rate of people with migraines is twice as high as the typical population? And that people with chronic migraines (what I have) are 42.9% more likely to kill themselves than people with episodic migraines? As someone who lives with never ending migraines these numbers don't surprise me. (read the full study here)

I have wished for death before and I'm sure it will come up again. But I would never ever act on it. Despite the constant pain, vertigo, and insane impact on me. And it is INSANE! There is no better word. Despite all of that, what keeps me going? What keeps me here?

Of course Love is #1. Especially love for my wonderful, amazing, fantastic family. They keep me laughing, keep me positive and try to help me as much as they can. I also think they'd all be screwed without me.

Shockingly my doctors would have to be #2. I know many people don't have that luxury of a fantastic medical team. Although they take a lot of time and effort on my end, they also provide me with a lot of relief and answers. I wouldn't have known that I was suffering major migraines without the Neurologist and ENT stepping in and educating me. I also would never have known to try Botox, the one thing that has consistently helped me.

Here are a few other things that not only keep me from killing myself, but make me smile and help me to thrive.

My beautiful garden that I created with my husband.

Silly, fun games that we play together.

We used to LOVE playing all kinds of games and puzzles, but when my Botox has worn off and I'm feeling "like garbage" (like now), these little iPhone games are about all I can manage. I love that we do them together.

Getting out of the house and into nature.

Any kind of nature! I can't drive, but I can wheel my chair around my small town. I can also go to and from my Mama's home. It's great to get out on my own and it gives me a feeling of autonomy, which is vital.

It's important for me to feel in charge of my body as much as I can. Maybe that's why I'm always cutting and coloring my hair.

All of these and millions of other tiny things are why I'm here today. Still fighting through the quicksand of symptoms. Of course a big sleep and some movies in bed now and again never hurt either.

And of course the...

Emotional Intelligence

The most important skill that I have learned is how to not let other's emotions and my own emotions impact me. Even now it is still challenging to remember to use my techniques to not let strong emotions affect me. But my ability is there and more often than not I can manage it.

What's the secret?

For me it goes like this...

1) NOTICE. I can't change anything I don't notice. I notice my own strong negative feeling and how it's affecting me physically. Or I notice that someone close to me is having a strong emotion and how it's making me feel physically. Step 1 glides right into step 2.

2) FEEL it in my body. Does my chest feel tight? Has my breathing sped up? Are my shoulders rising?

3) CHANGE. I slow my breathing intentionally or take a deep breath if my breathing stopped. If the negative emotion is external then typically the person will also take a deep breath automatically. I relax my shoulders and check my posture. 

4) VISUALIZE. If the emotion is particularly strong, it is helpful for me to take a moment for some internal visualization. I picture the emotion as water washing over me, but not through me. Or I'm sitting on a riverbank watching the emotion go by, floating on a leaf. Sometimes I picture my emotion is a stone that I'm holding in my hand. This helps me examine it more closely. Why am I feeling this? What can I do to resolve it?

For example... Something happens to make me feel angry.

1) I notice that I'm feeling angry.

2) I feel the anger as a knot in my stomach and see that my fists are clinched.

3) I actively unclinch my fists and start deep belly breathing.

4) I hold the anger as a fire ball in my mind and examine it. What just happened? If my anger is valid, I imagine I let it go like a dragonfly into the universe. If not I look within to see why what just happened made me feel so angry. Am I instead feeling afraid, vulnerable? Anger is often a shield for other emotions.

I can easily go through life being continuously reactionary. It's not at all hard to do. I'm very empathic and pick up on other's emotions easily. Being able to filter out what warrants a reaction and what is just better to let pass is the most important skill I've learned. It helps me feel calm, centered and saves my energy for much more important things like love.

Depression and Chronic Illness - One Year Later

Last April I shared some tips on ways that I help myself with Chronic Illness and Depression. But sometimes that's just not enough. Last July I had a few weeks where I just couldn't stop crying. I was about to start a new job that wanted me to work 40 hours a week and was struggling with illnesses that then still had no name (now I know it was a brain tumor, Metabolic Myopathy and Rheumatoid Arthritis.) I talked with my doctor and he put me on Cymbalta. That helped my mild depression and my joint pain. Things were good. 

Fast forward to today and I'm feeling the fog of depression again. I'm feeling numb to things I should feel engaged in, everything feels hard like I'm running through molasses (and I'm not talking physically, but mentally and emotionally.) I feel sad and things at work that are usually easy are becoming hard. I sometimes think about being dead and how lovely it would be (but not to worry, I'm not suicidal. There's a difference.) I feel overwhelmed and exhausted mentally. 

I think these are very common feelings when one is struggling with a medical condition or chronic illness. I once asked a friend with a spinal cord injury how she keeps so positive and she said "I don't allow myself to think any other way." So Cognitive Behavioral Therapy is what works for her. For me that can only work so long or so well.

So I messaged my doctor yesterday about increasing my Cymbalta. He asked my symptoms and I shared with him and now he wants to see me today to talk in person. I'm ok with that. I'm suspecting that instead of increasing my Cymbalta he'll want to put me on something else. Any help I can get will be appreciated.

But why not try therapy first? Well, I've had a lot of therapy in the past and I'm actually really good at using my non-medical tools. But I think there comes a time when therapy just isn't enough. You need help and you need it fast. 

On the non-medical mental health front I am trying out a support group on Saturday May 18th in my area with the Muscular Dystrophy Association. It's a "Mixed Diagnosis Group." So it's for adults with all forms of MD to come and talk. Partners are also welcome so my amazing husband will be coming with me. You can never have too much help or too many tools.

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. 

Patiently Being Impatient

I've become an expert at patiently being impatient. Patience is not one of my many (many) virtues. I've never been a patient person. However, when you're a patient, you HAVE to have patience. When my son was little there was a Sesame Street song that just nails it. It goes "You have to be patient, to be a patient..." Oh Maria, you wise a$$ woman you. 

So here I am. Patiently waiting to hear back from my Rheumatologist about a question I asked her. Patiently waiting for my May 1st appointment with my primary care doctor to explore anything I can do or take that might help while I PATIENTLY wait for my June 27th appointment with my new neurologist. See... that third one got me. I'm out of patience (and apparently can't spell "rheumatologist" to save my life.)

My BFF - the cup cozy for all cold things

And meanwhile back in pins, needles, numb, temperature sensitive, fire-ants-are-eating-me-alive land, I breathe and remind myself to be patient. 

I read this really wonderful quote yesterday from The Book of Joy. "If something can be done about the situation, what need is there for dejection? And if nothing can be done about it, what use is there for being dejected?" -Shantideva

I just adore that word "dejected." YES! I feel dejected! I feel it hard core! To my gut! To the PAIN (a little Princess Bride humor for you there.) And to force myself to instead feel hope, optimism, patience, is no simple task.

The Dalai Lama says that "As we recognize others' suffering and realize that we are not alone, our pain is lessened." I completely agree. I think that's one of the reasons I enjoy reading other people's blogs about chronic illnesses, autoimmune disease and other challenges similar to mine. It makes me feel not so alone. And when I see that someone has similar symptoms or struggles, it feels comforting AND validating.

Most of the time with doctors I feel like I'm trying to describe a world to someone who has no sight. It's just impossible. To share with others who can see what I see and feel how I feel is incredibly liberating. It gives me hope.

Spring is a time for renewal. 

I'm doing my best to join in on the growth!

The Dalai Lama also says that "The way we heal our own pain is actually by turning to the pain of others." I do notice that while I'm at work hearing of other people's deep pain, mine slips away. For that hour I can focus on comforting someone else rather than being the one who needs comfort. It is a very healing experience (hopefully for us both.) I feel very fortunate to do what I do.

I'm working on reaching out and sharing more of my experience with others. Making new friends and opening up more. For today I wish you good health and lots of love and patience.