collage of photos of amy gietzen

Dear Scleroderma: You Will Not Dictate How I Live My Life

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Dear scleroderma,

When we first met I was a 19-year-old freshman in college. I was working as a dietary supervisor and was at the beginning of my adult life. You took that away from me and so, so much more.

Growing up I had the best childhood! Amazing parents who cared that we had dinner as a family every night and took myself and my older sister and younger brother on a family vacation every summer. We camped, went fishing and swimming and, of course, roasted marshmallows. I was always excited to learn something new.

As I stepped into my teenage years, my passion for helping others blossomed. I started a job at a local nursing home and attended vocational classes in nursing. I had found my niche. I first noticed you, scleroderma, as a nagging pain in my wrist and elbow. Then, like so many others who have met you, my fingers started to turn blue. It didn’t take long for me to realize something was wrong with my body, and low and behold, there you were.

I was diagnosed in 2001 with the most severe kind of scleroderma: diffuse systemic sclerosis. Scleroderma, I found out, is an autoimmune disease that affects the skin and major organs inside the body. It is an over-production of collagen, which basically turns your skin and insides to stone. There is no cure and the origin of the disease and how you get it is unknown.

collage of photos of amy gietzen

At first I don’t really think I grasped the severity and the finality of you, scleroderma. My life pushed on as normal. It wasn’t until I started to get severe digital ulcers on my fingertips that my eyes opened to the horrors of the disease. Along with the ulcers, I started to develop scarring on my lungs, a.k.a. pulmonary fibrosis, and I had acid reflux so severe I would wake up in the middle of the night with the contents of my stomach coming out of my nose and mouth. My fight had started and I wasn’t going to take it lying down.

I dove headfirst into researching anything and everything I could find on systemic scleroderma. Which back then was not a lot. After days of searching the web, I came across a world-renowned doctor in Pittsburgh who had specialized in scleroderma for over 49 years. I called there the next day and was making arrangements to be seen by the end of the week.

When I stepped through the doors of the hospital for the first time in Pittsburgh, I never looked back. Everyone I met was not only familiar with the disease but had treated many patients who struggle with the disease just like me. I didn’t have to explain why my skin was so hard and tight or why I couldn’t open my mouth very wide. Or why I had red spots all over my body, and that no, they are not contagious! I had found my people: medical professionals who were familiar with scleroderma and had treated it before, and researchers who were working hard to find better ways to treat scleroderma, and ultimately one day discover a cure.

 

The UPMC hospital in Pittsburgh changed my life and I have been going there ever since! The road has not been easy  in the 15 years I’ve had this disease. I have been to three different states – Pittsburgh, Pennsylvania, Boston, Massachusetts and North Carolina on my quest for treatment. Not to mention my travels to every inch of Buffalo and upstate New York.

I have had a lung biopsy, a stomach surgery, surgery on my esophagus,  sympatheticaies on both of my hands, two cardiac ablations and a full scale evaluation three times for a possible lung transplant (which I was turned down for all three times). I have undergone two cardiac catheterizations and surgery on my fingers to straighten them so I could grasp things better. And my most recent adventure – a two-year-long process to get accepted at Duke University to undergo a stem cell transplant in a clinical trial.

I have had hundreds of tests and surgical procedures. For example: three right and left arm ablations, MRIs, CAT scans, X-rays, barium swallows, pulmonary function tests, blood tests, urinalysis, wound care treatments and ulcer debreedment on my fingers and toes, 41 hyperbaric oxygen treatments, iron infusions, chemo-based medicine infusions (Cytoxin), vitamin B12 shots, a PICC line put into my artery in my neck, EKGs, ECHOs, countless hours of PT and OT, and I’ve taken thousands of pills.

But through it all I have always focused on the positive parts of my life. Even at times when I am at my lowest, which includes my most recent let-down. I was denied acceptance into the stem cell clinical trial. Hearing the doctor say the word “No!” was probably the most devastating thing I have ever had to endure. Even then, I just kept pushing on and am trying to live day to day, experience life in the moment and enjoy every precious day I am given.

I look back on my life so far and am amazed at how I have met so many kind, selfless medical professionals and how I got to share my story with them. I started my own personal website on Facebook to try to reach other survivors who like me are just trying to “Stay Alive With Scleroderma!” I have had the pleasure of hearing from so many people from all over the world. People like me who were lost and had no idea what to do or how to move forward. People with a million questions who just want advice or a shoulder to cry on. Most of the time they just want to hear from a person who has been living every day with this cruel disease and know they can live a meaningful life while battling a terminal illness. I like to think I am helping them. That I am making their lives a little more bearable.

This past year I won a scholarship to attend the National Scleroderma Patient Education Conference in New Orleans. It was hands down the best three days of my life. I was privileged to be asked to participate in an interview for a commercial that a group called SPIN was shooting. They are putting together an educational website on scleroderma. I also volunteered to have photos taken of my hands and my makeup-free face to help the scleroderma foundation teach others about the disease.

collage of photos of amy's hands

Unless you are sick, you don’t know how “normal” it makes you feel to finally meet someone who can relate to your struggles and who knows what you’re going through firsthand! Someone who understands what it feels like to have a finger amputated or to need a feeding tube because you can’t swallow food anymore. If you had asked me 10 years ago to take a photo without my makeup on or speak publicly about my disease on a personal level, I would have given you a very, very hard no! Mainly because I just wasn’t living in my truth. I was letting my disease control me and how I lived my life and that, to me, was unacceptable!

Yes, scleroderma, you have changed my life in so many ways. In ways I cannot forgive, like causing me to have to quit nursing school without my degree and to resign from my job as a medical assistant because I was too exhausted to do all the work I was required to do. You have cost me friendships, relationships, my ability to have children, family vacations, job opportunities and you have restricted where I go, with whom I go with, when I go and if I go anywhere.

Having said that, I would not change a single thing about my life! Yes, my life has been drastically changed and I have had to learn to let go of myself as a healthy, normal person. I have had to teach myself how to live a life of a medically challenged person. And trust me, there are days when the bad definitely outweighs the good, but what would be the point of wallowing in the what-might-have-beens? In the things I can’t change? That is a waste of the time which, frankly, is very precious to me.

I honestly believe scleroderma came into my life for a reason, and day by day I am learning what that reason is. I could not look at myself in the mirror every day if I didn’t share all of my triumphs and all of my struggles over the last 15 years with others. I would have been so thankful to have had someone willing to reach out to me and answer my questions and listen to me cry over all of the things that were happening to me, the changes my body was undergoing and the things I had to give up. So I want to do that for other people struggling like I was. If I make just one person feel better about themselves and their situation, then to me, that’s a win!

We cannot expect to have a cure fall into our laps, so as long as I am able, I am going to do my part to help educate people about this disease and make scleroderma a household name! I will never stop fighting for my life!

Yes, I am a 34-year-old women living with scleroderma, but scleroderma does not and never will define me as a person. I have so many other qualities than that of being terminally ill. I will get up every day living my truth and fighting to stay alive with scleroderma. I could never say I’m thankful for getting sick, but I can say getting scleroderma has opened my eyes to all of the beauty of life and how it was passing me by. I used to live my life as if I had a lifetime to live. Now I  try to live every day to the fullest and be present and open to experience all of life – the good and the bad. I may not get to live my life exactly how I envisioned it to be, but I refuse to let this disease dictate how I experience my life, as long or as short as it may be.

Respectfully yours,

Amy

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To the Girls in the Store Who Were Laughing and Pointing at My Hands

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Last week I went shopping with my dad. We went to Target and to bunch of other stores. In the winter months my dad always drops me off at the front entrance. Whether it is Target or my doctor’s office, he pulls up and lets me drag myself out of the nice warm heat into the crisp, cold, Buffalo air. He then pulls away and goes to park the car.

When I get through the extremely heavy doors (because in Buffalo in the winter, we shut off the automatic door openers because of the wind) and actually into the store, I grab a cart and take it immediately over to the sanitized wipes they have over by the customer service desks. So I am wiping my cart handle down and I hear laughter behind me. A group of three or four teenage girls were gathered behind me waiting for the sanitized wipes. So I turn my head back around and start to clean my cart again.

Now I know I don’t necessarily look sick. If you didn’t know a thing about scleroderma and you saw me, you’d probably think I was a perfectly normal women. The only real telltale sign are my hands. So as I continued to wipe my cart I hear tiny gasps behind me, not very loud but I could hear them, so they definitely weren’t whispering. Then I heard one of the girl’s say in a hushed voice but loud enough for all her other friends to hear, “This girl is so slow! I could be checking out the cute boots over there by now.” Then her friend replies in the same hushed tone, “Dude, did you see her hands, I think her dog bit all of her fingertips off! OMG, so gross!” and another girl chimed in, “That’s probably why she is so slow, I mean, look at her hands.”

 

A small smile crosses my lips at that moment. I am fully aware of how my hands look and how they may shock or offend people. All of my fingernails are gone except for three fingers and a thumb on my left hand, and my thumb and pinkie on my right. I had the misfortune of getting really, really severe ulcerated sores on my fingers when I first was diagnosed and gradually with each sore, the skin gets infected, turns black and dies. Normal people who get sores get a scab, and when the sore heals underneath the scab falls off and the skin looks right as rain.

People like me, who have scleroderma, have a very hard time clotting, so we do not get scabs – we get infections, or the skin becomes gangrenous, turns black and dies. So we can’t regenerate new healthy skin. With each sore my fingers would get smaller and smaller. The nails would fall off or I would get a sore underneath the nail bed and the fingernail would have to be removed along with the dead skin with special “debreedment” creams, and if that didn’t work, I would have to go to a wound care specialist. They would have to scrape the black, dead skin off to give the healthy skin underneath room to heal. To say that having the skin removed hurt is being very, very kind! So I knew what the girls were looking at and why they had that reaction. I did find it comical that she thought a dog bit my fingertips off, and it was because I was missing some of the tips of my fingers that I was taking such a long time with my cart. Not because the cart I had was disgusting.

So I went along with it. I waited until I knew they were looking at me and whispering about my hands, then turned around and said, “Do you girls know where the dog food aisle is?” Every single one of their mouths dropped in shock. One of the girls stammered out “aisle two,” while the rest of them still had their mouths gaping. As I turned and walked away laughing silently to myself, I heard the same girl who made the comment about the dog say, ”Man, she must really love her dog to keep it after he did that.” That made me burst out into a full-blown laughing fit! Teenagers are quite gullible, but really, girls – you’re giving us women a bad rep.

As I continued pushing my cart up and down the aisles, I started to think to myself about how many other times someone has spoken about my appearance in a negative way, or has actually approached me and asked “why does my skin have red spots?” or “why does my mouth look so small and my teeth so big?” (I’m not kidding – someone actually said that to me). It made me think back to those times and how hurt I would be by those comments. When I was newly diagnosed and my body started to change, I was very self-conscious. Who wouldn’t be? Then to have a stranger point out to you the thing you’re most embarrassed about in front of other people? That was soul-crushing. People can be very cruel.

collage of photos of amy gietzen with the caption 'the many faces of scleroderma'

I just couldn’t understand what made these people want to speak so unkindly to someone they had never met. When I look at someone and comment about something, it’s usually in a positive way. Like I’ll comment about how I love her shoes or about how maybe she should wear that with a different pair of pants. I’ve never approached a complete stranger and told them they look weird, or asked, “Why did they put on that top this morning? Because it’s hideous!” Sadly, even if I did say those unkind things to someone, that person has the opportunity to change their top or fix their hair, if they so choose to. Someone living with a sickness like scleroderma or who has a physical difference does not get that luxury. I can’t just take scleroderma off for the day and wear it tomorrow.

We as people are so free with our words and open with our emotions. Look at Facebook and how people tell strangers about personal things. Like how I am right now. That is a great thing – however, I’d much rather a person approach me and ask “why my fingertips are gone,” or ask me a question in a positive way instead of pre-judging and speaking about me negatively. That way I don’t feel uncomfortable or bad about myself. People do not think about just how deep their words can cut someone.

If someone approached me in a kind manner to ask me a question about my appearance, the outcome would be much different. I would feel comfortable enough to answer their questions. They could leave having learned about something they had no knowledge of before they met me. In a perfect world, I would not even have to write this article because there would be no such thing as negativity. One can only hope, right?

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Young Adults Can Have Strokes -- It Happened to Me

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Stroke.  Whenever I used to hear that word uttered, I thought it was something I wouldn’t have to be concerned with until I was much older. Once elderly people had a stroke, their life was over– or so I mistakenly thought.

As a young person, I always thought I was invincible. I had young friends with cancer, friends who’d been in bad car wrecks and other horrific situations. I was always sad when these things happened, but selfish, in the sense I was always glad none of this happened to me. Before my stroke, my husband and I had a strong 11 year marriage, I had tried to be a good mom to a young boy and girl, I had a solid teaching career and things were proceeding as they should. I would say I had my priorities in order.

Something happened that turned my life upside down.

June 6, 2012, was when my opinion about strokes changed forever. I suffered a massive ischemic stroke in the brain stem which is responsible for many life giving acts we do daily (breathing, heart rate, breath support) without giving them a second thought. After the stroke, I couldn’t walk, talk or move anything. I was “locked in” which meant I could only move my eyes, and my family was told I might be a “vegetable” for the rest of my life. I was only 33.

When I was told all this information, it took a while for it to sink in. I was young, in shape and healthy, with a husband and two young kids. What type of a wife and mother was I going to be if I was in a wheelchair for the rest of my life and couldn’t say anything?

Would my husband want to stick around for this woman who had to rely on him for everything? I told him on many occasions he could leave. I wouldn’t like it, but I felt he deserved a “normal” wife. I felt it wasn’t fair of me to ask him to stay.

Would my kids still see me as mommy if I couldn’t ever hug them again? I felt trapped inside my own body with all these thoughts and fears, while none of them could be expressed. My opinion of life being over once a stroke hit definitely changed at that moment. It was then I decided to fight to gain back what I had lost. For my friends, for my family, for me.

The summer of 2012 was full of lots of rehabilitation and hard work. During my 12 week hospital stay, I learned to walk and talk again, taking baby steps the entire way, literally. When I was finally able to go home, more rehab was required by my doctors.

I remember the first time I went to the rehabilitation center, where many other people had suffered strokes as well, and I felt like I was in a nursing home. I was surrounded by a sea of white hair. Everybody was comparing stories on their grandkids or where they had retired from. I felt they looked at me like I was the oddball. I was definitely in the minority there. But I put my head down and focused on my rehab.

Never did I think at the age of 35 I would be retired from my job, be on disability, walk with a cane, and park in a disability spot. When people asked me, “Where do you see yourself in 5 years?” I did not include any of these things in my answer. But that’s OK, because I’m here.

Since my stroke, I have become active with American Heart Association/ American Stroke Association and I am passionate about educating others. It’s important for people to know that strokes can happen in young people, including infants. Nearly a quarter of strokes occur in people younger than 65. Regardless of age, the warning signs of strokes are the same. It’s often the reaction that’s different, though. Young people are more likely to ignore the symptoms, because they think a stroke can’t happen at their age.

Strokes can be easily recognized, even by a lay-person. The test to use is called the Face, Arm, Speech, Time test, or FAST. If a person is experiencing facial droop, if his or her arm or leg goes weak, if he or she has slurred or garbled speech, that person needs to go to the emergency room as quickly as possible.

I encourage all women to take your health seriously and know the warning signs of heart disease and stroke.

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How My Support Dog Helps Me Through Life With Chronic Pain

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About two and a half years ago, my husband and I went to the local shelter “just to see” the dogs. (I really should know better. I’m the type of person who would take all of the dogs home if I could.)

During this time, I had really been struggling with health issues. My depression had hit an all time low, and physically, things were going downhill for me and the doctors couldn’t figure out what was going on. (This was shortly before I received the additional diagnoses of lupus and rheumatoid arthritis.)

While we were at the shelter, we came across this shaggy, mid-size (about 50 lbs.) collie mix named Wilson, who I connected with immediately. We asked about him, and the volunteer provided what little information was known about him, and asked if we’d like to play with him outside. The shelter had these great fenced play areas with picnic tables, and so I sat at the picnic table and got to know Wilson a bit better.

 

He approached me cautiously, not out of fear, but concern before turning and sitting on my foot, leaning his head back in my lap for me to pet. This was extremely significant because of past dogs in my family’s life who had done the same with my mom. It was as if those animals who’d crossed over the rainbow bridge were telling me this was my dog.

A few days later, we officially adopted Wilson into our home. Initially, we were going to be the type of pet parents that didn’t allow him on the furniture or feed him people food. (That didn’t last long.) He was classified as an emotional support animal to help me cope with my depression and anxiety, but he seemed to sense how sick I was physically. Where he would play fully with my husband, tug on that toy harder, run faster, jump harder, he was gentle with me.

From the emotional and psychological standpoint, I call Wilson my Angel Dog. He’s brought so much joy into our lives, made me laugh with his goofiness, comforted me when I’m having difficulties, and just brings a sense of calm and peace. But about a year ago, our very smart dog showed me how much he was clued into me.

I had had a really rough few days where I was essentially living off of pain pills and Glucerna. I spent the majority of the time sleeping and it was just me and Wilson at home.

About mid-morning, I was awakened by the feeling of being pushed by something. When I came to, I realized Wilson was lying next to me in bed pushing me with his paws to wake me up and he didn’t stop pushing until I sat up on the edge of the bed. He then did his “I need to go outside” routine, and I stumbled through the house, heading toward the back door. But rather than go to the back door, Wilson stopped in front of the fridge, watched me for a while, and then looked back at the fridge. It took me a minute, but I realized I was likely hypoglycemic. I grabbed a meal replacement shake out of the fridge, downed it, and only then would Wilson go outside.

I returned to bed for more sleep after he came back in, and a few hours later, found myself repeating a similar pattern. Again, he woke me up by pushing me, but this time it wasn’t food he was after me to get, but water. And this time, he wouldn’t let me go back to sleep forcing me to stay awake. (Which is actually a really good thing because otherwise I would not be sleeping at night.)

He has also helped keep me from having panic attacks, alerted me to low blood sugar episodes and tried to warm my feet by lying on them when I’m having problems with Raynaud’s. Wilson loves to snuggle…he just hasn’t figured out that lying on top of me when I’m having a really high pain day isn’t the way to go sometimes. Wilson tracks me at night, particularly if I’m having a really bad night, and will keep tabs on me. (The night after my most recent surgery he made things really interesting for me. Every time I got out of bed, he would move and lie on the floor so I would have to step over him to return to bed. He made sure he knew where I was, but lifting legs over a dog after abdominal surgery isn’t the most fun thing ever.)

I’m not bringing up this topic to just brag about how awesome my dog is, although he is pretty awesome. There are a lot of positives to pets in the lives of people, regardless of their ability or disability. But when you have a disability, there are also some considerations to take regarding animals.

So, Wilson provides a great deal of services to me. But Wilson, like any pet, requires a great deal of care and has his own needs. For some people with the types of illnesses that chronic pain warriors deal with, the needs of a pet are too great and are more of a responsibility than some can handle. That leads me to: what questions should one ask themselves when considering taking on a pet/emotional support animal/therapy animal/companion animal/service animal?

(There are a variety of differences between an animal that is a pet vs. emotional support animal vs. therapy animal vs. companion animal vs. service animal, and the laws that govern the type of animal and where they are allowed are far more detailed than I wish to get into here. For people who are interested, I encourage you to look to the Americans with Disabilities Act and Regulations on Service Animals for further information.)

Questions to ask before taking on an animal:

1. Why do I want this animal in my life?  

Are you looking to adopt because you saw that Sarah McLachlan SPCA commercial one too many times? Or do you really feel ready to take on an animal with their needs? Have you researched the specific breeds/types of animals and temperaments?  If you adopt a puppy or kitten, are you aware of the increased care requirements you’ll have for a while? If this is a service animal, have you thought about the costs of training and education? These are all things to take into consideration.

2. Will this animal fit into my lifestyle?

Some chronic pain warriors are still able to work full-time, so is this animal going to be alone most of the day? If so, are they able to entertain themselves or will you return home to find things torn up? If you’re fairly sedentary, adopting a high energy animal who requires lots of exercise probably isn’t the way to go. Animals have personalities, too, so if you’re a person who enjoys peace and quiet, bringing a barker home might not be the best way to go.

3. Can I afford this animal?

Vet bills, food, medication, treats, toys…it all adds up. And if your animal becomes chronically ill themselves or requires special food or medication? It can get even pricier.

4. On my bad days, will I be able to exercise/play with this animal as they need to be?

On my extremely bad days, it can be hard for me to let the dog out; is this something you would have to consider?

5.  Is there support for me to turn to if I have to be hospitalized for a length of time because of my illness? 

Or even on those days where you suddenly find yourself stuck at the medical center for 13 hours, is there someone you can call who can help your animal out? I know Wilson can hold it for a while, but a dog can only cross their legs for so long.

And ultimately, the question that needs to be answered is: Will this animal bring more joy and help to my life or will the animal cause too much of a burden on me to care for it in my present health state?

I can’t imagine my life without Wilson in it, but I have the help of my husband for things like bathing him and making sure he gets enough exercise. Wilson is also calm enough of a dog that he doesn’t require constant stimulus, and while he has his hyper moments, that’s not his constant state. He fits into this family perfectly.

I’m all for animals in our lives as I believe they bring great joy and value, but we owe it to those animals to bring joy and value to their lives as well.

Note: Since writing this original blog entry, Wilson has been reclassified as a service animal. He continually surprises me with the ways he’s figured out to help me.

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Thinkstock photo via fcscafeine.

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What I Want Others to Know About Mast Cell Activation Disorder

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I absolutely love it when things work the way they were supposed to. I know what to expect. There are no surprises (I do not like surprises one bit!). I am prepared. Everyone gets what they are expecting to get. Life is lovely and the birds are chirping. However, when things don’t work like they are supposed to, there is confusion. There is disappointment, not to mention a fair amount of grumpiness.

This is the case with the immune system in our bodies. We can learn in school, we can read in text books and we can read on the internet what it is made up of and what is designed to do. Sometimes, though, it goes rogue. No one is sure why. I have read some that think it is because of faulty genetics passed down from parents or grandparents (i.e. if a parent had allergies, children are much more likely to have allergies). Some think our immune systems deciding to not play by the rules could be spurred on by a bacterial infection or a virus. Some researchers believe it is because of exposure to a toxin like mold or chemicals. Maybe they all are right.

What I do know is living in a body with a dysregulated immune system is like living inside a video game you can’t escape. Let’s talk about mast cells. They are the white blood cell master regulators of the immune system. The mafia bosses, if you will. They say “jump” and everyone says “how high?” Let’s talk about what happens in something called mast cell activation disorder.

 

In mast cell activation disorder (a.k.a. MCAD), these immune cells started off as good guys, as honorable, hardworking military sergeants, let’s say. They are thought to be in literally every part of the body, calling other parts of the immune system into action when the need arises by releasing chemicals called “mediators.” These chemicals signal the other parts of the immune system to get off their backsides and get to work. They help the body defend against diseases and they help with wound healing. They love to be anywhere you have mucous like the lungs, mouth, digestive tract, nose, etc. They are in blood vessels, nerves and skin tissue. And they are filled with specific chemicals designed to call specific immune system helpers. That sounds great, right? Fight disease. Aid in wound healing. But…

What if these disciplined, purposeful sergeants of the immune system went cuckoo? What if, instead of being able to actually recognize the enemy, they saw an enemy in benign things? What if everything they looked at looked like an enemy? In response to this delusion of the mast cell brain, this once helpful and reliable cell begins shooting its chemicals when it really shouldn’t. And when mast cells are mad, they are mad. They might start shooting at certain, random things, like when you eat chicken or oatmeal. They could draw their guns at bath water that is too warm or scented, clean laundry. It makes no sense as to why these things are bothersome to your body, but now, all of a sudden, they are.

Sometimes, mafia mast cells stick to an organ or two in the body, being ticked, shooting their guns and calling in troops to help fight something that was never there to cause harm in the first place. But sometimes mast cells go completely nutso. They are out-of-their-minds furious, and they send a memo to the mast cells all over the body to share in their fury. Now you have irrational white blood cells over-reacting all over the body!

The ones in the skin are ticked and they cause hives, a “fun” little trick called dermatographic urticaria (being able to write on the skin and have it rise up in welts), as well as swelling, flushing, random itching and burning sensations. The ones in the GI tract are grumpy and now, it won’t let any food be eaten without a reaction of nausea, vomiting, reflux, stomach pain and runny stools. And to add insult to injury, the mast cells in the stomach are mad if you don’t eat, either. You are darned if you do and darned if you don’t. The ones in the brain are mad, causing headaches and brain fog, anxiety, depression and fatigue. That’s not all! Mast cells can cause a drop in blood pressure, high blood pressure, fatigue, achiness, heart palpitations, wheezing and shortness of breath. And when it gets too bad, it can turn into anaphylaxis.

Triggers for causing mast cells to freak out (the technical term is degranulation) can be vast and random. They include medications, foods, supplements, hormones, stressors (physical and emotional), cold, heat, pressure, odors, chemicals, insect bites, pollen, pets and exercise. If the correct medications aren’t in place or if the mast cells are not responding to the meds, anaphylaxis is not uncommon.

There are other illnesses and disorders that may be found with MCAD. Those include:

– Allergies
– Asthma
Autism spectrum disorder
– Autoimmune disorders
– Celiac disease
– Eosinophilic disorders
– Fibromyalgia
– Food allergies and intolerances
– Reflux
– Endometriosis
– Interstitial cystitis
Irritable bowel syndrome (IBS)
Inflammatory bowel disease (IBD)
Migraine
– Mood disorders
Multiple chemical sensitivity
– POTS (postural orthostatic tachycardia syndrome)
– EDS (Ehlers-Danlos syndrome)

What if there was virtually nothing you could eat without having to run to the bathroom? What if during puberty or your menstrual cycle, you could not even leave your house because the pollen, exhaust fumes and other people’s perfume cause your throat and your eyes to swell? Imagine having an anaphylactic reaction to dryer sheets or walking to the car on a winter’s day! Crazy, isn’t it?! The situations that can cause reactions for people with mast cell activation disorder are endless.

One can see how anxiety and depression are common with this immune dysregulation. There jillions of triggers for symptoms, a handful of medicines that might work and even fewer doctors who know anything about mast cell activation disorder. It truly is a rare disorder. With MCAD, Epi pens are my security blanket and leaving my house is my nemesis. Weather is an adversary, as well as seasons and sunshine. I have to eat to live, and yet eating many times makes me wish I were dead. There is no predicting what my body will do, but what I can count on is the fact that it will be unpredictable. It can strain relationships and cause isolation. Fear and anxiety are constant battles because of the radical way my body reacts, but the funny/not funny part of this is, it is best to avoid stress so as to not bring on a reaction. And chances are great that people will have one or more (usually many more) of the other disorders associated with this immune disorder.

But this is how life feels when mast cells are behaving badly – always walking on eggshells, hoping to avoid catastrophe. I guess the cool thing about it is, now you know what it feels like to have a video game being played in your body. Unfortunately, rarely are you the winner.

This post originally appeared on Better Together.

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Teen on the Autism Spectrum Excluded From Her High School Yearbook

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Getting your high school yearbook is a time-honored tradition among graduating seniors across the country, but for Amanda Paeth, receiving her senior yearbook was not the highlight she expected it to be.

According to Connecticut news channel WTNH, Paeth, a senior on the autism spectrum at Mark T. Sheehan High School in Wallingford, Connecticut, was omitted from her yearbook.

“This is not right. You guys got every other kid but me. I basically gave the teacher my book and I walked out of school. You guys could keep it,” Paeth told the news network. Neither her senior photo nor her baby pictures were included in the senior yearbook.

The school’s yearbook is put together by students and then checked by faculty, Paeth’s mom, Jeanine Kremzar, told WTNH, questioning whether or not her daughter’s exclusion was intentional. “She was singled out of a lot of things and she missed out on a lot of things because of it because people just did not understand, administration didn’t understand, peers didn’t understand. Nobody took the time to get to know her.”

After repeated calls from Kremzar and WTNH, the school told the family Paeth’s omission from the yearbook was just an unfortunate oversight and that faculty members were more concerned about spell checking and making sure the quotes submitted were acceptable.

In response to her missing picture, the school has made stickers of Paeth’s photo which students can stick in their yearbooks. Since the yearbooks have already been distributed, Paeth’s is the only one with the fix so far.

“[People on the autism spectrum] still function like you guys,” Paeth said. “We still do clubs. We still do sports. We still go to classes like you. We still learn. That’s really it, it’s just that one small thing.”

Thinkstock image via LightFieldStudios. 

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