Priorities for Healing

I have not posted in quite a while. The past few months have been challenging, but before I share some of the craziness, this is how I chose to focus on my priorities for healing. It is so easy to let your own health take a backseat when there is chaos around you… especially if you are a natural caretaker like me.

A close family member had an anaphylactic episode for the first time. She has the same diagnoses as me, but our trauma center was not familiar with it and did not believe her. She ended up in ICU and I had to be there every day to manage her care with the assistance of our mast cell specialist.

Then, I had an episode of anaphylaxis… that scary throat closing kind. My typical had been more cardiac with low blood pressure and low heart rate previously.

Next came several weeks of crazy low heart rates in the 30’s and 40’s, causing me to be short of breath, lightheaded and unable to stand for more than a few minutes.

Then my husband, Brian, had a freak accident. He fell on some unmarked liquid on the floor of a hospital he was visiting for work. He fractured his lower leg in two places, requiring a long leg cast, no weight bearing and minimal activity to prevent surgery.

Lastly, I celebrated my 60th birthday. I had told Brian two years earlier, as I lay in ICU after an anaphylactic episode, that if I was still alive at 60, I wanted a birthday party. This is significant because I had had so many back to back anaphylactic episodes that my physicians were unable to control, that I was not sure I’d still be here. Plus, I am an introvert and dislike parties. I had never had a birthday party. Brian’s leg mishap occurred right before my party, so my kids and I had to do all of the work. My kids each live 30 minutes and 40 minutes away, so I tried to take the bulk of the responsibility.

Here is what I have learned…
1. I cannot care for everyone else and leave myself to last. Hard lesson for me, the forever nurse.
2. I focused on the things that support my health, both physical and emotional. I cooked food to nourish me, meditated more each day, journaled my feelings and gratitude and let go of non-essentials (like my blog and cleaning).
3. I did more of the things that bring me joy. I fed and watched my birds, pet my loving pet, Buddy, colored in my many adult coloring books and spent time with my kids. They are not really kids at 29 and 35 but they will always be my kids.
4. No guilt allowed, over anything. I did the best I could do, with a heart rate that was so low, I wondered how it was sending enough blood to all of my organs.
5. Because I have such difficulty sleeping, I did not focus on the number of hours I slept (or did not sleep). I went to bed each night with the intention to let my body rest, to meditate and listen to soft music with my earbuds. No stress.
So… my family member survived the anaphylaxis despite the hospital. I survived my anaphylaxis well too. My heart rate is still way too low and my cardiologist is discussing pacemaker with my other specialists. Brian is doing much better. He is now in a short leg cast after 6 weeks in that uncomfortable long leg one. He still has a long way to go, but he’s more independent now, so I can have a bit more time for me. And my birthday party was wonderful! I saw family members that I had not seen in almost a year and couple of close friends who are near and dear to me.

Life is good. Remember to make YOU a priority for healing.IMG_4127


Meditation and Symptoms

If I had to pick just one thing that has helped the symptoms from all three of my disorders the most, I’d choose meditation. I can see some rolling their eyes, getting ready to click away or getting uncomfortable about this suggestion. But… let me assure you that I was just as skeptical when it was first introduced to me.

About 35 years ago, my husband at the time left me for another woman when my daughter was 6 months old. I thought I would crack up. I sought out the help of a local counselor who first help peel me off the ceiling and in later sessions, began teaching me biofeedback. Meditation was one of the first things I learned. I was in so much emotional pain that I would have stood on my head if he said it would help. As my very wise daughter always says, “We move at the speed of our pain.”

Meditation manages my Ehlers-Danlos pain fairly well most days because I cannot take any pain meds except Tylenol, yet my joints dislocate daily. It helps me handle many of the mast cell reaction symptoms. When my heart speeds up when I stand due to the Dysautonomia, I can slow it right down with meditation. But most importantly, on days when I have symptoms of all three disorders slamming me full-force, meditation allows me to feel calm even with all that chaos. I rarely get riled up and my husband will attest to my calmness through the most crazy events. I mostly feel an inner peace that is tranquil and beautiful.

Even if you have tried meditation in the past unsuccessfully, I encourage you to try again. One of the biggest problems new meditators come up against is trying to meditate for too long. I’m going to share my thoughts for adding meditation as your symptoms relief:

  1. Start with 1 minute a day. When you have comfortably managed one minute, add another minute. Don’t rush it; this is not a race. When you get to 5 minutes a day, rejoice! There is no magic time. I like to meditate for at least 15 minutes, but after all these years, I can get so into it that 40 minutes may go by. Remember, I have been doing it for years.
  2. There is no one type that is better than another. I have practiced many different kinds over the years. I presently practice mindful meditation, simply sitting in silence and focus on your breath and being aware of thoughts coming and going. Many prefer guided meditations in the beginning. I always recommend BellaRuth Naparstek. She is amazing! You can trial different types of meditation until you find one that feels right for you.
  3. This is a picture from Mindful magazine that clearly explains posture. The most important thing is to be comfortable, but not lie down and fall asleep. how to sit/Mindful Magazine
  4. Initially, it is helpful if you can make a space to meditate. It can be a simple as one pillow on the floor, or a chair in the corner of a room. Having a designated place at first helps your mind to switch into meditation mode as soon as you sit there. Here’s a pic of my meditation corner in my home office.meditation corner
  5. The most important advice is to make it a habit. Just like you brush your teeth every day, fit meditation into your schedule in a place that’s doable. The way adding a new habit works best is to tack it on to an existing one. For instance, if you have time in the morning and shower in the morning too, meditate right after your shower… or right before.

I will share other types of meditations in future posts. Until then, 1 minute is all you need to start. Oh, and the one thing I want to assure you, the goal is NOT to have an empty mind. It’s to quiet down enough to observe. Peace and calm to you…Jan meditating

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



You Can Be Happy

Dealing with a chronic illness or even more than one is tough stuff to be sure. At times you can get frustrated, tired, angry and feel defeated. But yes, you can be happy too. It is so easy to get caught up in the symptoms that make you feel miserable, the medications that you must take to function and all of the changes in your life due to the illness.

Some of us have lost friends, lost jobs, had to move, deal with family members who don’t understand, try to find doctors that know how to treat the disorders, buy special food, wear different clothes, change cleaning products, deal with daily pain… well, you get it; the list is long.

But despite what sounds like a terrible existence, we can experience joy, love, fun and of course, be happy. How do you find this when you are feeling such pain? By shifting your thoughts. We tend to focus on the sickness. After all, we feel sick! But, what if you begin to focus on other things…

  • Mindfulness: you have all heard it, over and over. But do you practice it in your every day life? It is simply being aware from moment to moment and noticing exactly what is happening around you and within you. Right now, I’m writing this, but I also hear the water fountain in my husband’s office, so relaxing. I’m also aware that my back hurts, so I get up and stretch for a couple of minutes. I am staying in this present moment. No ruminating over past events or worrying about possible future events. You know how that is? Will I need to Epi and call 911 again? Will the ER know what to do? Have a plan but don’t waste energy. The present is just that… our present to ourself.
  • Gratitude: whether you write in a gratitude journal, use an app on your phone or share around the dinner table each night, expressing gratitude will shift your thoughts from fear and negativity to joy and positivity. If you’re not a believer, just try it for 2 weeks. Faithfully write down 3 things every day that you can be grateful for. Some days, it may be, I woke up today; I have eyes that can read my friends’ posts; I can hear this beautiful music. Others don’t have them. Some days will be better. I have books and books of written gratitude. I enjoy going back and re-reading them.
  • Music: whatever kind of music that makes your heart soar, your feet tap and your body relax is perfect. Some like jazz, some like country, others prefer rock, some like classical or maybe hip hop. I’ve been known to turn up the volume and dance when no one is around except my pup, Buddy. Good for the soul.
  • Plan a vacation: many of us do not get to go on vacations. Travel is difficult. But research from the Netherlands shows that the act of just planning a trip causes more happiness than actually taking the trip. So choose a fun and exciting destination and plan away!
  • Kindness: this is an interesting one but try it. According to Martin Seligman, the author of The Pursuit of Happiness, acts of kindness with no expectation of a reward, bring happiness. Even when we are struggling with chronic disorders, there are times we can fit in moments of kindness for another. You will feel that endorphin high. Nice!
  • Smile: even when you feel like you have nothing to smile about, smile. Your brain will perceive the smile as happiness and it can literally change your mood. My nickname at my last job was “smiley”.   🙂

I would LOVE to have you share your happy moments with me. And here’s a photo of “smiley” with Buddy.smiley

Deep Breathing

When you are dealing with chronic diseases, pain and all of the stress and anxiety that go along with them, having some way to relax and calm down when panic strikes is invaluable. The quickest to access, easiest to do and most effective is deep breathing. There are many different techniques but I will guide you through my favorites.

Deep Breathing circulates oxygen to your brain and throughout the cells of your body, increasing their functioning capacity, lowering heart rate and blood pressure and calming and quieting your stressed nervous system. To be effective, practice daily, not just in times of stress. I always remind people that you cannot breathe deeply and be anxious at the same time. It switches you from “fight or flight” to “rest or digest”.

Deep abdominal breathing

  1.  Sit or lie in a comfortable position with your back straight.
  2.  Place one hand on your abdomen.
  3.  Inhale deeply through your nose, expanding your ribcage, making your belly expand outward and raising your hand.
  4.  Exhale through your mouth, using your abdominal muscles to push your belly button towards your spine, emptying all the air from your lungs.
  5.  Repeat 3-5 times slowly.
  6.  Practice daily.

Hawaiian Huna Ha Breathing

  1.  Find a quiet place to sit down and concentrate on the feeling of the seat beneath you and your feet on the floor.
  2.  Take a deep breath in through your nose, expanding your belly.
  3.  Let it out through your mouth with the loudly whispered sound of “ha”.
  4.  The out breath should be twice as long as the in breath.
  5.  Repeat 3-5 times slowly.
  6.  Practice daily.

The 4-7-8 Breath

Place the tip of your tongue against the ridge of tissue just behind your upper front teeth, and keep it there through the entire exercise. You will be exhaling through your mouth around your tongue.

  • 1.Close your mouth and inhale quietly through your nose to a mental count of four.
  • 2. Hold your breath for a count of seven.
  • 3. Exhale completely through your mouth, making a whoosh sound to a count of eight.
  • This is one breath. Repeat the cycle three more times for a total of four breaths.

The tip of your tongue stays in position the whole time. The exact time you spend on each phase is not important; the ratio of 4:7:8 is important.

This exercise is like a natural tranquilizer. Do it at least twice a day. You cannot do it too frequently. Do not do more than four breaths at one time for the first month of practice. Later you can extend it to eight breaths. Initially, you may feel a little lightheaded when you first breathe this way, but it will pass.

Once you develop this technique by practicing it every day, it will be a very useful tool that you will always have with you. Use it whenever you feel anxiety rising or anything upsetting happens – before you react. It is also helpful with falling asleep.Attractive man breathing outdoor