So Many Life Changes

When I think about the many life changes that have occurred to me in the past few years due to Mast Cell Activation Syndrome (MCAS), Dysautonomia and Ehlers-Danlos Syndrome (EDS), it can be overwhelming. Life as I once knew it, as I used to function, as I had come to enjoy, is no longer. Whether you share one or all of the disorders that I have or some other chronic condition, you know doubt have experienced some of the thoughts and feelings I’ll describe.

I have always been the extremely active, athletic type, running 3-6 miles a day for many years. It was my emotional release, my “feel-good”. Even when EDS ended the running, I walked a lot… and fast. Now, the mast cells cause an anaphylactic reaction with exertion and any standing activity drops my blood pressure from the Dysautonomia. I have mourned my once active self, going through all the stages of grief… denial (no!), anger (damn illness!), bargaining, (if I can just get better…), depression (why bother) and finally acceptance (let’s make the best of what I have!).

I have gone through these steps with each area of my life changes. My career ended because I could not longer work. I loved being an RN, loved working in the hospital and caring for patients, so anger hung out with me for a long time. Thankfully, now I receive pleasure from helping others by volunteering as an RN online.

Relationships change too. When you are so sick that you cannot leave your house without pre-medicating and even then, your blood pressure may drop or your throat may close, you just stay home. Friends slowly fade away… at least most of them do. Family members become nervous that you’ll have another anaphylactic episode and land in ICU again. Isolation is real.

And certainly food changes! The foods I loved the most were taken away. I’m Italian and I love to cook. No more cheese, no more tomatoes! No dairy, no gluten, no soy, no chocolate, no alcohol, no spicy food, no cured meat and the list keeps growing. There was some serious bargaining going on here.

It’s kind of like having an infant again, only I’m the infant. In order to travel, even to my doctor’s in Boston (4 hour drive), we have to pack special food, many medications, my blood pressure cuff, nebulizer, lots of water and our list of questions. Vacation is a monumental event, especially since mast cells react to friction and pressure changes. Bumpy car rides and planes can be painful (EDS) and anaphylactic (MCAS). The photo below is a rare vacation to Maine for our anniversary a couple of years ago. I love looking at the photos.

I could keep going about every aspect of my life that has changed, because it has. I said to a close friend, one who has stuck by me, “I’m not the Jan I used to be.” I was very sad. Being a wise woman, she told me that I will always be the same Jan, with the same spirit and heart. I just have a different functioning level. That is the truth and something we can remember on tough days.

So, here is what I want to share with all of you. I will be 60 in April. There were many times in 2013 when I was lying in ICU and then when I lost my kidney, that I did not believe I’d make it to 60. But I have! well almost. Most of the time, I am at the acceptance part. But when I’m not, when I have those dark days (and we all do), I have learned to reach out to my buddies. I know who will understand, who will get it and just listen. Don’t isolate.

Next, do all the little things that bring you pleasure. Everything and anything that is within your ability. If you are saving your beautiful crystal for company, NO. Use them now, for you. Sit on your deck when weather permits and enjoy the birds (my treasured time). Listen to your favorite music. Call someone you care about. Cook some new recipes from foods you can eat. I have developed a great cookbook now. No matter how miserable the day is, and it will be, take a moment to be grateful for something. On my worst day, when the pain is crazy, I am grateful that I can see to color to distract me.

And lastly, my secret weapon for living in peace with these life changes is meditation. I will be writing a separate blog post about meditation, but it keeps me mindful and keeps me in this present moment. I do not want to be in the future… terrifying thought.

Like Forrest Gump said, “Life is like a box of chocolate. You never know what you’re going to get.” We never know what we are going to get either. Grieve… it’s okay. And remember that you can bounce back and forth between the different stages. Our lives change… we do not. Sending you all gentle hugs.Maine vacation



Grocery List and Weight

I’m the first to tell you to eat the foods you like, whether or not you’d like to lose weight. The important difference with Mindful Eating is to choose foods both pleasing and nourishing. So when I recently read in Medscape that shoppers who use a grocery list made higher quality food choices and had lower body weights, I was interested.

The research included 1,300 mostly overweight or obese people. The research could not determine if some paid more attention to their food and weight, so they also planned more or if the people that planned more were able to resist temptation and stick to their list.

I’m not sure it really matters because I know that if you want to eat healthier, lose weight or cut down on sugar, the food you have in your immediate eating environment determines how successful you will be until you are able to slowly, over time, change your undesired eating behavior.

So if you make a grocery list of all the foods that you like and want to keep abundantly around you, your chances of achieving your goal are much higher than if you did not plan and came home to then decide what to eat.

You can even make the process easier for you by making a master grocery list to check off your most used (and liked) items and an area to write things in for each shopping trip.

Keep in mind that grocery stores are carefully set-up to tempt you to make impulse buys. They pay consultants big money to show them the most convincing displays and areas to reach you. And don’t forget that the manufacturer’s spend tons of money to make the packaging have compelling eye appeal… and buy appeal.

You can see that having a grocery list just to overcome these food evils alone will be helpful. You will increase your success even more if you plan a menu and shop from that. It doesn’t have to be exact or written in stone. Leave flexibility for those crazy nights when things change… because they will.Couple shopping at supermarket

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How Will Clean Eating Help You?

So many eating plans, diets, doctors recommended food products, that knowing what to eat has gotten a bit complicated. If you’ve heard the term clean eating, you might be wondering what it is or how will clean eating help you?

Let me define clean eating as beautifully described by Cleaning eating is consuming food in it’s most natural state or as close as possible. It is definitely not a diet but a lifestyle approach to food.

I guess whatever you call it, clean eating, eating whole foods, cutting out processed foods, the end result is fueling your body with good nutrition that makes you feel good.

You know that shaky, yucky feeling you get midmorning when all you had for breakfast was a cup of coffee and a white bagel with cream cheese? Your body quickly metabolizes white flour into glucose and since cream cheese is fat, not protein, your body needs more fuel sooner.

Switch that out with a breakfast of 2 egg omelet loaded with veggies and tea and your body will be pumping till lunch time. Just make sure to drink plenty of purified water to keep hydrated.

Although clean eating’s recommendation is to only buy foods with an ingredient list of only one or two ingredients, that can be difficult. I say to buy as little packaged foods as possible and when you do, 6 ingredients or less. And if your grandma couldn’t recognize an ingredient, beware.

My newsletter this month featured a recipe from clean eating. If you missed it, here’s the link.

Listen to your body. It tells you when you feed it clean food and when you give it junk. How do you want to feel?omelet with vegetables

© pavel siamionov –