Your life is yours...steer wisely!

 

 

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Insomnia, MS, Clueless Twits and Unneeded Stress

Why is it that those designed to help us tend to hurt us most? Family and friends that don't get it. Or worse off, medical doctors that don't get it and cause MS stress. I recently posted that my doctor just told me they were missing about seven years of medical records. What I found out recently was that they are missing all of my records from my first neurologist. That's some 10 years of records. They've been treating me for three years telling me they have my history and records but come to find out this week that they have been lying. In addition I can't seem to get my doctors to call me back. I left six messages in total last week for two doctors. I finally received a call back from am assistant saying they were going to call me back. I guess the question is, can someone recommend a good neurologist in the Pasadena area?

And what's so frustrating is that I finally found a doctor that seems to get it. But without a call back its very frustrating. My other neurologist would call me back by the end of the day. This is rude. And of course it's now Saturday. No time for them to call me until Monday. Another stressful weekend caused by doctors unwilling to tend to their patients.

Then the family. Got to laugh at them sometimes. We want so much for them to get it. For our folks to say, wow, I totally understand where you're coming from. Instead they are mostly clueless. "We'll, you don't look sick". "You have pain? I didn't know you were ever in pain". Or best yet "of course you can do it, MS is just a figment of your imagination". I've heard it all. And that's from my closest family members.

They make plans and expect us to follow. Despite how we feel or how we want to manage our disease. Shouldn't it be us who makes the decisions? Shouldn't doctors call us back when we have questions? Shouldn't our loved ones simply accept our guidelines and boundaries?

One would like to think so. But alas, it is family and friends that so often let us down. So often they put their own feelings ahead of ours despite our illness and our needs.

People say we our spoiled. Wanting our way to make our lives healthier and easier. I call it setting boundaries. And boundaries are one of the best treatments for MS. When we set boundaries we are recognizing the importance of our disease. It's identity and its existence in our body, mind and soul.

Right now I'm setting boundaries. Making yet another list of questions for the doctors if they return my call next week while recording lack of actions over the past two weeks. In addition I'm looking into other medical options in the area and continuing to pursue my lost medical records. I didn't need this stress. It would have been fine to just go into the weekend with all of my questions answered. But that would have been too easy. That wouldn't have been the MS way.

While I can't replace my family too easily the medical team requires some adjusting. I need a team that will help me get healthy. Not a team of clueless twits. Which seems to be my surroundings lately. Clueless twits.

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Fight Back with Active Reading, Meditation and More

MS got you down? Temperatures rising to 100's. Energy low. Work load increasing and a break for Self is essential!
After waking and scanning my body for MS activity, I decided to do a movement meditation. Which really just entails lying still, quieting the mind, and visualizing trotting horses around a big field. It's the rhythm that helps me. Quieting the mind and posting to horses that exists only in my mind. It settles the mind and body so I do it.
Then time for some FreeFlow yoga. Just light stretching today. A little stiff. Some music to help me slide into a good mood.
Today I'm also hitting some active reading material. Fly fishing, cooking, art and nature. Life doesn't get much better than this.
A good imagination is crucial for surviving with MS. Flexibility. Knowing that being alive is what it's all about. Doing what you want. Living your life despite hold ups.

And now that I've had my mellow MS morning, I'm ready to take on the world! Well, maybe not the world, but at least the tasks at hand: some coding, some cooking, and most importantly, prepping for my nephews who will be here by end of day. Ages 4 & 7. Fun times!

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Venting, Friends and Good Eats

When things get tough go for a healthy snack! Fresh figs, buckwheat sprouts, sprouted adzuki beans, cabbage...

Amd make sure to call a good friend and vent! Friends are great for that if its not too much. Sometimes venting is best done on paper. Or in a soundproof closet...which is where I am going next!

 

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Post Frustration Sunshine

TakeThatMS! You try to take me down. And oh how you succeed at times. Like this morning with a 4am anxiety attack over Doctor's mishaps. But now, I'm letting that anxiety go. It is steaming out of me, through my breath, my pores. I am cleansing away the anxiety and will focus on sunshine. I will be who I want because of what I do today. I will not let this disease take me down. I will rise above these frustrations, make the calls I need to, get a better handle on the situation and move on. Already my breathing is calming. Already my fingers relax on the keyboard. Already my frustrations wane. I am OK. I will be OK. There is only OK to be.

 

 

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Lost medical records, frustration and value of time

Had an appointment with my neurologist yesterday. my neuromuscular specialist to be exact. Whom I like very much. But talk about frustration! Went in for two MRIs having to do with an injured shoulder. There was a mix up on paper work. Or confusion by the MRI folks and they didn't give me the contrast on my first MRI. I called my doctors office that Day at 11:43am to confirm that the paper work for Mondays MRI was correct. I was told that I didn't need a contrast and the paper work was fine. Got to the MRI on Monday, didn't do the contrast. So, in yesterday's appointment I was asked about the contrast. And it was on the paperwork. Seriously? Now I have to go back, hire a driver, be sedated and take a half a day off. And this is costing me money. I don't see them paying for the mess up. Oh but they sure are glad to take my co-pay.

And then to top it all off it seems my retired neurologist from 2010 only gave three years of my medical records to the new doctor. So what happened to all of my records from 2001-2007? Six years lost. Doctor is gone. Records are gone. And not only that but my records from a three year study at USC for a T Cell vaccination are missing as well. My entire medical MS history for my first crucial seven years are gone.

I am so frustrated. Try to do everything right and it doesn't work. No one takes responsibility. My fault I'm sure. Didn't know I have to get copies of notes from every dr appointment I go to these days. Not easy for someone with MS. Or anyone for that matter. Oh, and they charge! The doctors won't keep medical records past a few years (supposedly ten years but that's bologna) but they gladly charge you $25 to make copies.

Isn't HIPAA or something supposed to protect our rights as patients?

 

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Hatch Chiles are in!

For those who haven't tried Hatch chiles from Hatch, New Mexico, well they are darn tasty! While I was processing the loss of my friend yesterday I dove deep into culinary distractions. From my friends garden to local produce, made a couple of rocking meals.

First dish: roasted Hatch chiles. Fresh corn on the cob. Rice cooked in roasted tomato juices and onions. Sautéed rice in olive oil before adding other ingredients. Included a little saffron in rice water. Diced cooked chicken. Jack cheese.

 

Simply mix it together. Add some grated jack cheese and heat in oven when ready for dinner. The Hatch chiles have more flavor than Anaheim peppers. Sometimes I mix half and half I'd folks are not too spicy. Serve with sour cream, cilantro, etc. I served it with the eggplant tomato dish below. All was well received!

The second dish was a take on eggplant Parmesan. Started with roasted heirloom tomatoes, roasted Garlic and herbs. Then layered some roasted yellow squash from garden. Mixed some grated cheddar with ricotta and made a layer of that. Another layer included breaded and baked eggplant slices.

It was a crazy day of playing with food. Topped off with a great friend and family over for dinner and extra meals to share with loved ones. This is one way I say #TakeThatMS!

 

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Take a Break...it may prolong your life.

How many of us with MS are over-achieves? Active, go-doers and do-gooders? When the words "slow down" mean dropping from going "nine-0" to a "55" and no less? Come on folks. We must learn to slow down. As soon as our body gives its first warning.

As I type my friend and next door neighbor is dying at age 56. Rheumatoid arthritis got into her lungs and caused one to collapse. After six months of surgeries, pain and struggles, she has let go and will be with her Lord. Age 56. Too young.

It was less than a year ago when she came to me for help and advice on nutrition. We sat in the living room and caught up. Carin earned her law degree from USC and had been working various law firms over the years. The RA had gotten the better of her. Hands torqued and skewed, body thin as a rail, Carin fought hard to keep up her daily routine. Contributing to society with a good job. Helping her elderly mother. Living with and assisting her sister and niece. Being part of a family. She was consumed with living.

When she came to me for this meeting she looked scared. She knew something was going on but did not know the severity. We talked nutrition, health, stress, life. And what I remember was her saying something to the effect of "I could have slowed down a long time ago. I didn't listen to my body like you did when your MS hit. I'm paying a price that I can't afford".

This was before the numerous surgeries. Before the real stress of the disease hit. I've been so scared for her but was not a good friend. I didn't know what to do. She was too weak in the hospital for most of the time and too weak at home for visitors. But couldn't I have written her a letter? I emailed her but I know that was difficult for her. But only once then I stopped.

All I can do now is be there for her sister, my neighbor and friend. Their mother is in a convalescent home. She is now by herself and her 16 yr old daughter. As a flight attendant this is not going to be an easy time. All I can do is be there for her.

Taking a break. Stopping. Resting. It's the toughest thing for me to do but most important for keeping my MS at bay. I used to only stop when I had a hangover. Which wasn't often but that was an excuse to be on the couch and watching tv. Other than maybe once a month is was go, go, go.

Sound familiar? Learning to chill has been difficult. In the beginning I didn't have a choice as I was so disabled by the disease. But as my MS wanes and I feel stronger, the desire to go, go, go gets unbearable. But if I keep up with my desires I find myself back in bed. With MS being the victor. And I don't want that. I want to say #TakeThatMS!

Yoga helps. Medical marijuana can help. Playing silly computer games and watching mindless tv works. Meditation is great. Teaching the family and friends that being a couch potato is OK despite societal expectations. Sometimes all I need is a rest in a cool, not too bright location, mid afternoon. Time to regenerate those batteries as they are fragile, and we don't want to blow a head gasket. Think we've already cleaned that cylinder once.

I am angry right now. About Carin's passing. She was a beautiful environmentalist ravaged by a terrible disease. Her mind always in action, the brightness shining through despite the illness. I'm angry she is gone. I'm angry I could have done more. Done anything. I'm angry at the doctors. I'm just angry.

But the writing helps. The catharsis of releasing my angry thoughts help them purge from my mind body soul. And this is good. We don't want to keep anger as it settles in our kidneys and that steals us of our life energy. Be angry. Get it out. Cry your friggin head off. Yell.

Then....take a deep breath. Decide your best, gentle way to bring peace: yoga, bathe, meditation, tying flies, social media, stretching, writing, knitting, painting, etc. Find what works. Today I wrote to release my anger. It's not all gone and I'm finding that the anger is trying to emerge through other thoughts. Be careful of this. Find peace throughout body, mind, soul. Cleanse those dust bunnies. Breathing deep into your belly. Listen to your music. Find peace.

Today the reggae on Pandora is working. Reminding me to slow down. To breathe deep into my belly. Carin left this world too early. I know she had many dreams untouched. There is nothing I can do. Breathe deep. But to remember what she said. About the importance of slowing down and letting your body heal. Mind over matter. Not mind over body. Listen to your body. Breathe deep.

For some peace I am pouring myself some apple cider vinegar water with Bragg's cider. Its an alkalizer. And I find the bitter taste quite appealing. My ph test came out clean this morning. Surprising considering the wine I had last night. Cards, family and dinner at a great friends house. But I scrubbed my teeth and scraped my tongue clean last night and had a giant glass of Phion water. Plus took my vitamins and Protandim yesterday. Been slacking on my supplements lately. Though my test came out low, I feel acidic and will drink the cider water. Sometimes the paper is dark green. Ack. Something you don't want.

While studying holistic nutrition at Baumann College I learned the importance of having ph paper around. Our health is directly related to alkaline/acidity level in our body. And that is controllable by diet. Which is something I have control over. Plus, I made this amazing juice yesterday. Check this out:

Purselane, dandelion greens, Fuji apples, cucumbers from the garden, ginger, pineapple. Wowza! Medicine in a bottle.

So while I'm nursing my emotions I'm nursing my health as well since the two are connected. I don't quite understand the relationship between emotions, MS and relapses but I will figure it out. I find it amazing how the devastation of losing Carin can directly effect the nerves, muscles and strength in my legs. That's just random. That is MS.

Let's find a cure for all autoimmune diseases. This is just stupid.

 

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Devastation, MS and When Plans go Awry

It has sunk in. The devastation. The sadness and disappointment. I'm not going on the much planned road trip across country. At least not this year. It was a tough decision to accept but not a lot of choice. So, time to realign the life I just spent six months realigning. While its easy to find new focal points and projects its difficult to accept the disappointment. And I can't help but to blame much of this on my MS. The feeling that my body is failing me. And while I want to count on all my friends and family for 100% support, it is not fair to them or to me. I can't event count on myself that much.

Plans frequently go awry with MS. The heat. Fatigue. General malaise. And while often invisible, the pain is heartily felt. Flexibility is key to thriving with MS. While I spent months planning for this trip, I had to keep a plan B in my back pocket. It was not a trip that I had control over. I was a tag along. And that didn't work. So, time to realign.

Well, MSontheRoad had changed scope! I'll be going to hit all 50 states promoting MS awareness. And while I won't be in the swanky apartment on wheels as planned, I plan to see a lot of friends, meet many new folks and stay at some very cool places!

The first place on the agenda is the Hitselberger Ranch in Seal Rock, Oregon. I trained a few of their horses a few years ago and am looking forward to some time at their beautiful home amidst a spruce forest. Oregon is mostly MS friendly, especially on the coast where it doesn't get too warm. In fact in can be quite soggy. But that's OK! Time for good friends, horses, hiking, exploring on quads, fishing and more....

So, when plans go awry, take a deep breath meditation and acknowledge your emotions from shock to anger to acceptance. Do something nice for yourself. Remind yourself that while these plans were quashed new and better plans are around the corner. Keep a positive visualization in the forefront of your mind. Repeat it. Over and over.

Call your friends, family, support group and ask for help. Share your emotions. MS folks tend to be super strong and inhibited to show weakness. But by showing this weakness you're letting go of ego. And by letting go of your ego you will find that Self is limitless.

And remember to smile and say #TakeThatMS !

 

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A Rocking Day with MS...

Here's to rocking life with MS: Yoga, walking, healthy eating, fun projects, family and friends!

After a great free flow yoga session, (video coming) I hit the morning with a walk. Summer heat is staying away allowing for cool mornings...

Had a great phone call with a bestie. Friends are vital when suffering from any illness, especially MS.

Seemed like a good time to make some fresh watermelon juice!

And if that wasn't enough, after a couple hours on the computer, I hit the kitchen for some vegan, GF spring rolls! Tamari cashew cream is the key.

 

My physical and nutritional needs are met, now time for friends, work and play projects, gardening and enjoying life. Glad I love my work as it often makes for fun and creative times....and allows for time to stop and smell the roses...or in this case find little katydid nymphs on the chamomile.

 

 

 

 

 

 

 

 

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