Mast Cell Disorders, Ehlers-Danlos Syndome and Dysautonomia

Navigating the world of chronic disorders with insight, support and information.

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

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So Much Pain

Pain is a part of life. No one gets through it without the experience. But if you have Ehlers-Danlos Syndrome (EDS) or a Mast Cell Disorder, pain can be your constant companion.

“Regular” people just take an over the counter (OTC) pain medication or prescription pain medication when they experience acute (sudden) pain. But the pain from EDS is chronic and can be with Mast Cell Disorder. So although some medication may be an alternative, many mast cell patients (I’m one) are unable to take any pain medications. Even OTC Ibuprofen is a trigger for a reaction and for some causes anaphylaxis.

Through the years of constant dislocations, surgeries and significant pain, I have gathered every strategy I could to manage. Here are the ones most effective for me:

TENS unit– transcutaneous electrical nerve stimulation. Many insurance companies cover them with a physician script but they are not expensive. But mast cell patients, note that vibration can cause a reaction, so start slow and low.

Stay away from sugar as much as possible. According to Harvard Medical School, highly refined carbohydrates (sugar, white bread, rice and pasta, soda, etc.) increases the levels of cytokines which are inflammatory messengers.

Relaxation– I use any technique that works, but have tried most. Tension increases pain. My most effective is meditation. It does not need to be a long time, start with 5 minutes. Guided imagery is also very effective. Bella Ruth Naparstek is my favorite.

Breathing techniques– these are so important that I will do an entire post on them. They can change you from “flight or fight” mode to “rest and relax”.

CBT- Cognitive Behavioral Therapy– this type of talk therapy focuses on identifying those negative thoughts and behaviors we have and teaching us the skills to change.

Chiropractors– EDS patients have to be very careful that you choose one that understand the dynamics of EDS. Regular manipulation is not recommended. But the right chiropractor doing the right technique can be excellent pain relief.

Sleep– I will admit this is the one thing that still alludes me but these are the props or suggestions that have helped many: body pillows, pillows under the knees and behind the back, contour neck pillows, ear plugs, sleep mask, ambient noise and sleep routine before bed (15-30 minutes). Poor sleep increases pain levels.

Exercise– This can be such a challenge. With Dysautonomia, just standing for more than a few minutes can cause a blood pressure drop and feeling of lightheadedness. Any exercise, even lying down or seated, is beneficial. I’m getting a recumbent bike and will be very slowly work up the time and resistance. Mast cells can cause exercise induced anaphylaxis or “just” a reaction, so the key is to start slow and easy. Two minutes a day. Then three and so on. For EDS, I have two great resources. The first is a webinar I listened to sponsored by EDNF called Intelligent Exercise. The other is a book written by a physical therapist specifically for EDS patients.

 

Distraction– This is one of my favorite techniques to manage pain. Your brain can only focus it’s attention on so many areas at one time. Those pain signals sent to your brain compete with everything else going on around you. So make those distractions fun and enjoyable. Two that many use is music and movies. One of my favorites is playing with my grandson, Riley. I forget all about my pain.

Playing with Riley

 

Loneliness and Isolation

If you have any kind of a chronic illness, especially if it affects your functioning, you may have experienced the not so pleasant feelings of loneliness and isolation. And if you have a rare disease like Mast Cell Disorder, Ehlers-Danlos Syndrome or Dysautonomia, it is compounded by much of the medical community not being familiar with it plus often taking years to be diagnosed.

As it that isn’t crazy enough, family and friends sometimes don’t believe your symptoms, think your exaggerating, refuse to learn about it or treat you differently. I have some friends who have disappeared because I can no longer go out and keep up socially.

Sometimes it can cause problems in your relationships when your role totally changes from full-time employed person to one who needs assistance. If you were the caregiver, like me, changing roles to the one that needs the care is so very tough on everyone.

So if you find that you are experiencing loneliness, despite family being present and isolation from “normal” people, I have some thoughts about how to gently ease the pain. Remember this… often people’s reaction to us is out of fear… What will happen to us? Will we get worse? Will there be more financial issues? Will my loved one die? How can I work and take care of them?

  1. That feeling of loneliness is just that… a feeling. Being lonely triggers that scary feeling of abandonment that many of us have experienced. As little kids, we fear our parents would leave us, boyfriends/girlfriends did leave us, friends in school shunned us for new friends, etc. Remind yourself it is YOUR feeling, not a fact. You can be alone and not lonely.
  2. We often isolate. Out of fear, from lack of energy, frustration from others response to us, feeling not worthy of others friendship. Reach out. First start in a safe place like a support group for your disorder. Online can be less threatening. Then, as you make online friends, see if there is a local support group to meet with the friends in person. If not, check to see if any live in your area. That’s what I did and met the most amazing woman. She came to my house and we had a wonderful visit.
  3. Even though we can feel so stinking sick sometimes, focus on positive, upbeat things in your life. Look hard. We all have them. Your kids are beautiful. You spouse is hard working. Your apartment is cozy. Your dog is loving and affectionate. It doesn’t matter how miserable your situation seems at the time, you do have good things happening. I write in a gratitude journal every day. Some days, I can only write, “I woke up today.” When you shift to an attitude of gratitude, you are more fun to be around.
  4. Pay attention to your self-talk. Critical messages like, “No one will want to spend time with me.” is self-fulfilling. Or, “I’m in such pain, I’m not good company.” Give this a try, “I’m going to call my friend and we will talk and laugh.”
  5. When you are struggling with a chronic illness, you want to be able to talk about it. Share freely with others who are struggling too. Of course you need to let your family know what’s going on, but don’t turn into the “chronic illness personality”. All nurses are familiar with this. Being sick can transform you into a cranky, complaining, unpleasant person. When I worked in the hospital, nurses would know quickly who the chronic patients were. I vowed never to turn into one, no matter how bad my disorders progressed. Talk about something other than your illness. Be a bright spot, not a dark cloud. Be someone others enjoy being around.
  6. Steer clear of the toxic people. If they are family, decrease the amount of time spent with them. If they are friends, boot them out. Nurture any and all loving, caring and compassionate people, both in person and online. Support is what we are looking for, not someone telling us what we really need to do is heal ourselves and stop this nonsense.
  7. Being alone and in solitude is not being lonely and isolating. The difference is how you feel. I treasure my alone time and solitude. But those times I have isolated and felt lonely, there was always something else going on. Usually some fear that needed addressing.
  8. Keep yourself busy, even if it’s in your home. I started coloring with colored pencils in adult coloring books and LOVE it. I also adore all of my plants and care for them with love. Even if you are bed-bound, there are so many things you can do. I know some masto friends who do amazing knitting and crafts.
  9. One of the most effective ways to channel feelings and emotions is through journaling. It can sound so daunting, especially when you don’t feel well. I tell everyone not to be a perfectionist. Write one word. I have been journal writing for years. Sometimes my one word is an expletive. That’s the kind of day it is. You don’t have to write paragraphs, or even sentences. Write a couple of words. Releasing thoughts onto paper is very therapeutic.
  10. Take supreme care of yourself. Eat the best food you can, learn stress relieving techniques, drink plenty of purified water, exercise (even baby steps) and manage your disease the best you can. Some day, you will feel well enough to venture out to be with your friends. Until then, do what I do, have them over to your house. Oh… and those friends that don’t bother with you any more because you’re sick and can’t socialize… they weren’t really friends anyway.

Reach out. Find someone to share joy and happiness, not misery. Sending love and hugs.journaling

Finding Doctors

Having a rare disease can be a frightening journey at times. Compounding that fear is finding doctors that are familiar with your particular disease or disorder. When my kids and I were diagnosed with Ehlers-Danlos Syndrome (EDS), I tried to find a specialist here in upstate New York, only to find out, one did not exist. Since we were diagnosed in Manhattan by a whole team of doctors, going there for each family member didn’t seem reasonable.

Ironically, I was an orthopedic RN, working with some really good orthopedic surgeons at a well-respected trauma center. Unfortunately, EDS is something they were all familiar with but not one had kept up with the very latest information on managing the symptoms. I had already had over 20 orthopedic procedures by the time I went to the Ehlers-Danlos National Foundation (EDNF) conference and listened to the physicians who spend their medical practice studying EDS and caring for us. Not one surgery was successful and now I knew why.

It took over 20 years to be diagnosed with Mast Cell Activation Syndrome (MCAS) and Dysautonomia, despite repeating my symptoms numerous times to physicians. What can we do to find the physicians that are most knowledgeable about these disorders?

  1. Connect with people through the disease/disorder networks: EDNF, The Mastocytosis Society (TMS), Dysautonomia International or Dinet. The members probably have already done the leg work and found the most effective doctors.
  2. Find a primary care physician who is at least open to learning about your rare disease. I’ve had more than one say they remember learning about it in medical school but have not had a patient in their medical practice… yet. Don’t shy away if they say they have no patients with EDS, Mast Cell Disorders and/or Dysautonomia. Ask if they are willing to learn more about them.
  3. My neurologist knows migraines inside out and upside down. But he only vaguely knew of mastocystosis and never heard of MCAS. But he is very willing to read anything I bring him and intently listens to all that I share. Winner!
  4. TMS, Dinet and Dysautonomia International have physician referral networks. As more physicians are specializing in that area, they are added to the list. EDNF has a EDNF Center for Research and Clinical Care in Baltimore, MD.
  5. If you can possibly manage it, go to the learning conferences. Some offer DVDs post-conference for those that cannot travel. My geneticist, Dr. Jeff Milunsky, from Cambridge, MA spoke at an EDNF conference. He is a rare find; not only does he diagnose EDS, but he treats the many symptoms. He has made a significant difference in my functioning. Even more impressive, he understands mast cells and dysautonomia!
  6. Never, ever give up! Even if your insurance company won’t allow you to travel out of area for specialist care, there are ways to maneuver around the HMO rules when the care you need is not provided in network. And open enrollment time is here. Although more costly, PPOs typically offer more options for out of area.
  7. As more of us are diagnosed and require continued medical care, our disorders will be more commonly known through the medical community. In the meantime, ask questions. Don’t be intimidated. If I had asked my orthopedic surgeons how many successful  surgeries they had done on EDS patients, I may not have so readily agreed to all those procedures.

So I end with a silly picture of me at my primary care physician’s office, who has seen me much more than he ever expected when he agreed to take me on as a patient. Sometimes I get frustrated with him and sometimes he with me. But we let each other know. Communication, as in all relationships, is so important.

Jan at doctor's

Do You Know Your Physical Limits?

One of the most challenging and frustrating things I’m learning to better manage my Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS) and Dysautonomia is knowing my physical limits. Whether you have one or all three of these disorders, it is crucial to figure this out. Do you know your physical limits?

I was always a very active person. As a child, I was the busy, constantly moving, energetic kid. I’m a twin and the family joke was whatever my sister was doing, I was physically doing more. I started running in my early twenties and ran through all of my pregnancies. My brother-in-law who used to live in the apartment under us in the early years of our marriage, jokingly said “Every time you turn on your lights, you turn on your vacuum.” Working as an RN, I actually enjoyed the non-stop work, often signing up for extra shifts.

But then… my EDS symptoms continued to get worse. My joints were dislocating more and more. My orthopedic surgeon not so gently suggested I leave nursing before I did more damage to my body. What??? Stop running! What???

Fast forward a few years and I’m diagnosed with MCAS and Dysautonomia. Triggers, triggers everywhere. Exercise, heat, humidity, friction, pain, fatigue and of course, food. As I struggled through this learning curve of finding triggers, I have also been trying to determine how much I can actually do before my body rebels. I’m not very good at it yet.

I’m a caretaker by nature… always have been. It is utterly painful for me to sit… and sit and sit. I want to get up and DO. My husband gets so frustrated with me because he sees the aftermath of my activity. I’m much better with housework. I finally can JUST dustmop the hardwood floors and dust the furniture the next day. I alternate laundry days and cleaning the bathroom days. BUT… if I go outside in my yard, I lose tract of time. I love being outdoors and working in my flower beds and feeding my birds. My husband keeps suggesting I set my phone timer for 30 minutes and sometimes I remember. But sometimes I’m pulling weeds and an hour and a half go by.

If you don’t feel any reaction during the activity (I don’t usually), it’s very tough to gauge your time according to your body’s symptoms. The crash shortly after, whether pain, dropping blood pressure, itching, nausea, etc. is the clear sign of going past your physical limits. So what I’ve been doing is keeping tract of exactly what I’ve done, how long I did it and what was my reaction. The next time, I try to cut it in half. When I do it, I am successful. A work in progress…

I’d love to hear your experiences.bird feeders

 

 

Do You Feel Alone?

Having a chronic illness, especially a rare one like Mast Cell Disorder or Ehlers-Danlos Syndrome or Dysautonomia may cause you to feel alone. There are not many physicians that specialize in these disorders and many of us spend years, if not decades, feeling sick and going from doctor to doctor, only to be told there is nothing wrong with us.

You will hear me say this over and over, but I do not believe they are so rare. I think they are grossly underdiagnosed. Because the symptoms can overlap with many other conditions, they can be difficult to diagnose. Mast Cell Disorders and Dysautonomia especially are not disorders that doctors see in their medical practice and “sort of” remember something about them from medical school.

Whether you have one of these disorders or all three like me, having significant symptoms that the majority of the medical community either don’t know about, don’t understand or discount can be frustrating, frightening and isolating.

I think the very worst is having family members and friends who either just don’t want to learn about it, think you’re exaggerating or straight out think you’re a hypochondriac. I used to spend way too much time educating them, explaining symptoms, reactions, reasons for not being able to do certain activities. Finally, I started to focus only on my health, not convincing them. It was a relief.

So how do you NOT feel so alone when family, friends and the medical community are not necessarily on your side? Setting healthy boundaries is very important. I’ve gotten very good at that now. I have fired doctors, ended friendships that no longer served me and spent less time with family members that were hurtful. But… I do surround myself with friends who care about me despite being sick, although there aren’t too many, I’m happy with the couple. I see some of the best specialists and ask for referrals from them to see others.

But the most important support is meeting others with the same disorders, mostly online. Because I’m all about keeping a positive attitude even in the face of very unpleasant situations, I “hang out” with the more positive people. You can find amazing support, caring, concern, compassion and friendship in these communities. I do not go there to complain about the disorders and being sick. We all have to vent at times, but generally, we help keep each other up and offer support and love at a level difficult for healthy people to comprehend.

Reach out to others. If you want to connect to a supportive community for one of these disorders and cannot find it, I will be happy to assist you . You can either email me or use my contact form found on the side and bottom of each page of my website and on my contact tab. You are NOT alone. And you may develop the most incredible friendships because we understand. Comments are always welcomed below.Awake and feeeling alone

Mast Cell Disorders, Ehlers-Danlos Syndrome and Dysautonomia

I’m making a change on my website. The focus of emotional eating and Mindful Eating has been changed to Mast Cell Disorders, Ehlers-Danlos Syndrome and Dysautonomia. BUT, first, let me reassure all of my present clients that I will continue to coach them. I absolutely believe Mindful Eating is the way to take charge of emotional eating, I’ve just decided to write about things I personally know, live and share with family members and many online friends. I will still write about healthy eating, stress and emotional eating within the new structure.

Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue disorder causing joint dislocations and subluxations, tissue fragility and pain. The collagen or “glue” that holds us together is faulty. As it continues to breakdown, more body systems are affected; internal organs, muscles, tendons, skin and blood vessels, but this is not inclusive of all. People can be affected on a spectrum, so some of my family members are more severely affected and some are less so.

Dysautonomia is dysfunction of the autonomic nervous system that often co-exists with EDS. Since the autonomic nervous system controls all involuntary body functions such as breathing, heart rate, digestion, temperature, etc. when it malfunctions, symptoms can be significant. My blood pressure drops so low (70’s/40’s) that I take two medications to keep it normal. My heart rate rarely makes it out of the 50’s and has dropped into the 30’s. Others have the opposite with heart rate and blood pressue going quite high.

Mast Cell Disorders are very complicated and encompasses several different forms. I have Mast Cell Activation Syndrome (MCAS). Everyone has mast cells and they are typically beneficial but in mast cell disorders, we either have too many or they are “misbehaving” releasing mediators. This can cause allergic-type symptoms in every body system and the worst is anaphylaxis.

I have always said that self-care is so important to maintain good physical and emotional health. It is crucial when you have any one of these disorders or the “triad” which is all three together. I am in an NIH study with Dr. Joshua Milner who is researching the genetic connection between EDS and mast cells. So are many of my family members. With their permission, I will occasionally discuss issues my kids (29 and 35) deal with too (pictured below). They have inherited the “triad”.

So, I will still be writing about health, stress, self-care and many of the things you are used to from my blog, but now it will have a different focus. Join me on my journey…Carrie and Christopher

Comfort Other Than Food

It’s so easy to reach for food to comfort yourself. Most of us learn this coping technique early in life and use it frequently. But what comfort other than food would make you feel relaxed, calm and forget the stressors of the day.

You might be surprised that at 59, I have taken up coloring. I am a twin and my sister has always been the creative half. She is very artistic, musical and natural interior decorator. I never even like art in school. I briefly did crocheting in my 20’s and may restart but never art.

Psychologists recommend it as a relaxation technique because you focus on the activity, not your problems. It also brings us back to childhood with coloring books and crayons and fun times.

Although meditation is my main stress relief and feel-good technique, I thought I’d try this coloring thing. Much to my surprise, I found it not only relaxing, but fun! I printed several online coloring sheets, mostly mandalas because I think they are beautiful. Add colored pencils and I forget everthing, including time.

I also downloaded an app for my iPhone for those times I have to sit and wait, especially in doctors’ offices. It’s called Colorfy and it’s free. At the end of the post is my first attempt at a Colorfy picture. Again, very relaxing and enjoyable.

Coloring is just one comfort other than food. But it’s a new one for me, so I wanted to share. They even sell coloring books for adults if you don’t want to print them from the internet. Enjoy your coloring!coloring mandala