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

Crave Sugar When in Pain

Here I sit with my left foot in a not very comfortable CAM boot. According to the doctor, I have a tendon or ligament injury. He’s not sure which one but I need to be immobile for at least 4 weeks. It is painful and the one thing I know with certainty is that I crave sugar when in pain.

Having Ehlers-Danlos Syndrome, the genetic connective tissue disease, means multiple joint dislocations and non-stop muscle spasms. And apparently it also causes tendon and ligament damage. There is a physiological reason why we crave sweets when we hurt.

Sugar releases neurotransmitters from the reward center in our brain that do actually numb the pain for a brief time. Notice brief. This is the same reward center that responds to pain medication. But due to my Mast Cell Disease, I cannot tolerate any pain meds except Tylenol, so pain is my constant companion.

Do you unconsiously reach for sugar or some type of sweets when you are in pain? When your head is pounding? Or your backache is unrelenting? If so, there is a physiological reason. But, instead of going for the sugar to gain very short-term relief, become aware of that response and choose an alternative.

I now consiously tell myself that I’m in pain and will crave sugar, so I need plan B. Because I cannot take medication, my go-to is meditation. I do not feel the pain during my meditation and it is less after. I also use the other typical treatments too: ice, moist heat, TENS unit, muscle strengthening exercises.

Sometimes I succumb to the sugar craving. But it is with total awareness and with a plan for the continued pain when the brief response wears off. So what sends you to sugar?CAM boot