So it’s been a while since I posted and a WHOLE lot has happened. Abridged recap?

Basically I haven’t gotten better. Last month, while the vomiting and Gi issues were still not resolved and causing problems, I began fainting even while just laying in bed. My blood pressure was wild (think 220/200 one minutes, 90/55 just 5 minutes later, 140/60 5 minutes after) and no matter what I tried, everything was making me nauseated. My doctor decided I needed a port or PICC line to help with fluids and potentially medicines as well as TPN if we reached that point. I was so relieved. Despite it being a rather major decision (although it’s really not, lots of people get them and usually Chemo patients need them) I was happy to have an option. He even let me choose what I wanted for my own safety. After researching all the types of catheters (thank you Laura, a nurse friend who worked with chemo patients) I discovered there are TONS of types of main lines, Vas Caths in the jugular, Hickman lines, permacaths, etc. A port would be my safest choice because it can be deaccessed and, despite what many people believe, it actually has a lower infection rate, but infections are much more dangerous.

We found a wonderful surgeon, (which I’ll write about another time) who asked no questions, was happy to place one for me and listened to all my needs and pre planning that was required for me to undergo a procedure. Even the anesthesiologist too the time to look through what was important about my case.

My recovery was a little less than spectacular. Post op was a very long 3 hours of strange blood pressures and a crazy high heart rate. 110/50 and 1130BPM for hours isn’t a great idea. Finally, after a lot of medication, I was sent home where I spent the next 7 days on the couch sleeping downstairs (stairs were too dangerous) while my parents alternated sleeping on the floor to keep an eye on me. We learned how to give me fluids 3x a week from the home health nurse. I learned that fluids and home health care without insurance is VERY expensive. And my body finally decided NOT to be an asshole and I had NO MAJOR CRPS FLARE UPS. Which is unreal.

However, after 2 weeks of 3x a week fluids we were sent up to 5x a week then 7x and now 6x with one bag being a banana bag for vitamins and minerals. The vomiting has become intermittent now but I’m still having GI issues. The nausea is constant but bearable. And it is hard to sleep with a port always being accessed, but I’m finally hydrated.

My doctor has decided to pull me off Cromolyn, my Mast Cell stabilizer drug that also costs a fortune, as he doesn’t think it’s really working and could be contributing to my constant stomach and GI pain. We added another new medicine to try and calm things, but have had to reduce how often I take it due to the nausea and pain side effects. I’ve also been pulled off all of my safe foods. I was eating a LOT of potato (mind you a lot in my world is like half a baked potato a day which was 80% of my food for the entire day) and some rice based noodles. But no more, no gluten, dairy, sugars, dyes, carbs, or high fat foods. Plus I have to avoid high histamine foods, foods high in other reactive things like salicylates, sulfa, insoluble fiber, and seeds or anything with seeds. So all together, my doc would rather I not eat and give my system a break, but I have medication that must be taken with food…that doesn’t work. So I was on, I kid you not, BEANS AND EGGS. Legit like bean chips and a scrambled egg (must be fully cooked). Then I started to not feel good again and remembered that it’s not a good idea to feed me the same food all the time, I build up a sudden intolerance and sensitivity to it. Plus both have histamines and without something to balance that out, even if I didn’t have MCAS, I might start to have serious issues.

So now we rotate through re-fried beans (2 TBs at most), lentil or bean chips, coconut and chicken broth soup, carrot ginger soup (sometimes but not lately), an egg, and now, finally, a frozen, organic, baked chicken nugget! (just one though…)

You would think I have nothing left on my bones but sadly, badly acting cells hold onto water and fat cells anywhere they can and steroids just amplify it. Somehow, amid all this chaos, my body had hung on and kept my protein levels in my blood right on the cusp of having issues. My BUN levels, not so much.

My doctor is awesome. He really wants to avoid anything invasive and alternative feeding options for as long as my body will keep trying. Plus, he won’t subject me to some of the tests other doctors would often insist on (tilt tables, BMB, gastric emptying) because he believes the risk out weighs any information it could provide. Now that’s a refreshing opinion. He’s also pulling me off other medications that could be causing more issues or amplifying whats going on, and is going through certification to check me for CIRS (chronic inflammatory response syndrome- basically an easily inflamed, hard to calm, prone to over reacting, body). There’s a whole lot more it is, but it could explain the connection between everything else and make my MCAS more of a symptom (like my POTS and Cushings syndrome like side effects could be) rather than it’s own little problem.

Well that’s basically everything. There’s a hell of a lot more to tell, but I’ll get there eventually. Right now, writing and reading is really hard with swimming words and headaches.

Stay strong.

Today is Mastocytosis and Mast Cell Diseases (MCAS included) Awareness Day. So, in honor of that, I thought would finally post something. This is something I wrote after some of my own experiences and some of those shared in a few support groups I belong to. Something I never thought I would have to consider is the debilitating side effects of sensitivity and allergic reactions to smells, enviornmental factors, and even other people. While I have had my own struggles with food and medicine allergies and sensitivities (try explaining you actually can’t eat cucumber and NOT look like a cheap asshole in a sushi place) I have never had to suffer through being unable to walk into a store because of allergies or reactions, NEVER had to walk out of a restuarant because there was nothing for me there. I have had to deal with restaurants not knowing their own food (both as someone working in the industry, and heavily trying to change that, and as a customer). So here is a collection of experience pieces pulled from many different, incredibly strong people who have commented or posted about their own struggles or those of their children in an effort to raise awareness to the rest of the world.

Where We Can’t Go

There is an invisible wall between us and the rest of the world. A wall of smells and scents, temperatures and light, that keep us away. not everyone, but enough to matter.

The sunshine is blinding, far too hot, and too risky on those medicines we take. The increase our skins sensitivity to sun and cause rapid sunburns, leaving us in agony for our bodies responses last for days. A sunny, warm day can quickly become a test of our bodies ability to cool fast enough or a mad dash to a fan and the cool indoors. But not too fast, because sweat and overheating too can cause a flare, fainting, or an adventure with an epi-pen. try explaining to the hyperactive 4 year old that they cannot run outside with their friends because they may become dangerously ill.

Thinking of a nice trip to the mall? No chance. The scents and smells tossed haphazardly into the air by perfume vendors, candles opened all at once, and far too many ambitious hawkers eager to snag your hand to show you the latest cream all spell disaster. One spray too close, one candle scent too many, one sample on our skin can lead to a simple migraine (for us that’s the least of our problems) or a full fledged trip to the ER complete with throat closing, hives, and even collapsing onto the floor.

Out on a date or going to a nice meal? Forget it. Too often restaurants won’t or can’t accommodate or don’t even know what exactly is in their food. What CAN we eat? how long has it been sitting out or in the fridge? What’s SAFE? Is there any hidden seasoning or other items FAR riskier cooked too near? Will there even be an option we can eat? What about the woman seated nearby and her strong perfume or the waiters gentle cologne? Is it even worth trying? Is the anxiety of pre-planning going to be too much or just fall apart?

A grocery trip is a navigation nightmare complete with extreme pre-planning and contingency upon contingency plan. Are those cinnamon brooms near that door? Change course. Is there even another entrance? Avoid that cleaning isle, could a sales associate grab you the ONLY detergent you can use that is inevitable trapped in the center of that danger zone? Is there even someone you can ask? Is it sample day again? Yet another cooking smell in the air and alarm bells go off. How fast can we shop and get out before our bodies become overwhelmed from the stimulus. The line is long and there are candles and potpourri galore up front to try and avoid. Is that person in line buying all ten of those cinnamon brooms? Please don’t leave one up there. Just skip that line for safety. Can’t stand in this line, the amount of detergent in that cart could wash a brigades uniforms for a week. Did they clean the store with bleach again? Is that ammonia in the bathroom? No bathroom breaks here I guess.

Why even try when the stares we get for a mask on our face or the gloves on our hands make us appear as hypochondriacs or someone with the flu? We don’t look like we went through chemotherapy so that doesn’t make sense, right? How many times are we going to get asked in a doctors office why we have on a mask when they provided them up front in the first place? How many strange stares can we take as we try to navigate a world no longer safe for us?

The answer is As Long As It Takes. Until we keep changing the face of illness, changing the stigma, nothing will actually change. Until the rest of the outside world understands we choose to do things for our own safety and to protect them as much as ourselves, we will just keep going. We don’t wear a mask because we are sick or think you are sick, we do it to help ourselves avoid a scene, avoid a sudden rush away if you cough or sneeze. A cold or flu is not a simple game for any of us. You may not see what we all experience because it isn’t written on our shirts, seen clearly in our eyes, or even announced, but it’s there. Some of us are fighting a harder battle than others, having to make massive changes to just get the daily bare minimum done. Some are on risky drugs just for the chance to go back to some form of normality. Many are being proactive with protection so they don’t have to risk wasting a precious epi-pen for something they could have avoided.

You may not see us. We aren’t everywhere. Many cannot attend a march or a 5k or a charity event, despite our desires to go. We often miss birthdays and weddings because there is no energy or strength to go or no understanding party there to offer a safe meal or request an avoidance of perfumed items by guests. Many have missed special reunions or family gatherings because “there is just no way you could actually have that many issues, just get over it and come” is all too often an excuse. We don’t want special treatment, we ask for understanding and acceptance. We ask for an open mind.

While I may not spend my days in constant fear of a horrible allergic reaction to something new, all too many are. Too many people’s needs are ignored because it’s an inconvenience in our lives. Before this happened to me, I am ashamed to admit I could have fallen into that category. Trying to understand, a willingness to change, but not enough effort put in. Despite my best efforts, no one is perfect. Coming from the “sufferer” side now, I don’t ask for perfection, I just ask you to try.

I ask you to consider what your friend or neighbor or family member may choose not be sharing or may decided to share and their need for you to reach out an understanding hand to help. I ask you to do your best as a teacher, a parent, a child, a friend, a business owner, or a casual person to be understanding, accepting, and accommodating. It’s overwhelming, sure, but not impossible. This world will never be built perfectly for everyone, hell my University had no accommodations in some places for wheelchairs, zero plans for service animals, and no idea how to help with medical emergencies, until it happened to me. And then, with the hard work of one administrator, things changed. It only takes ONE voice to speak up and make a change and that makes the world of difference.

I have one last tale to tell, one of my own experience and of gleaming pride of my incredible staff. While working as a General Manager in a restaurant, I fought hard to ensure our food allergy warnings were up to date and available to all. I pushed to make sure we tried our hardest to accommodate those with so many allergies and difficulties. I had an incredible staff standing behind me making it all happen. On a very busy Friday, a woman approached a server and asked about an allergy menu for a sever allergy. They directed her straight to me where she explained her son had never been able to order for himself out. NEVER, at 12. He had a huge number of dangerous allergies and few places were safe for him and others she was unsure about. He was going on a school trip and needed to know how to order for himself. I handed her our list and handed him a special menu. Her smile and his smile meant everything. I walked them to the front and asked him to tell me the allergies so we could get him something to eat. And for the first time, this young man, ordered himself something to eat, knowing it was going to be okay. His mom was so nervous, but she knew someone finally got it, someone was listening. If she wanted to stand there and watch them do it, I would have let her. My kitchen prepared that meal with the utmost skill. Gloves were changes, bowls scrubbed, stations sanitized, plates separated, gloves used to bring out the food. Items were checked and double checked. My servers took care to check in on them, reassuring the mother that they had eyes on him and his friends as well. I never saw them again, never heard if that trip was a success, but for twenty minutes, I knew my team had very proudly changed someones life in the tiniest of ways. Had even one person brushed it off as “unimportant” or “just another frantic mother overreacting over her child’s potential food sensitivity” I couldn’t say how proud I was of that team. How much it meant to ME to see them stepping it up. Suffice to say, they never let me down when it came to guests food allergy needs and I beamed every single time. See, any one of them could have brushed it off as just another manager comment or obnoxious and useless note to learn, but they didn’t. They took the time to try and make the world just a little more built for someone else. And that’s all we’re asking.

I have a lot of time on my hands. A little too much sometimes. A thought occurred to me during a sleepless night (once again another contributor to this extra time). I’ve never really introduced my parents.

Yesterday I had my port placed and we couldn’t safely get me up the stairs so I slept on the couch. Somehow my mom figure out how to add tables and a foot stool so I couldn’t fall off. We didn’t sleep much. My mom slept in a very uncomfortable chair to watch over me. My dad came to swap out at 4:30 am and slept on a hardwood floor.

My Mom: Madre, Mom, Mum, Momma, Mummy, Mommy, and of course MELINDAAAA. I’ve always had health issues. She’s always stepped up to the plate to be there for me. But this time around it’s killing me to see her so stressed, scared, and worried about me. She spent nearly 6 weeks with virtually no sleep as I went through withdrawal and my symptoms got worse. I’ve watched her give up her limited free time to be here with me. She’ll eat what I eat in solidarity. She set up my apartments furniture and gone shopping for what I needed. She put all my stuff away when i had to move home. She’s cleaned and cleaned and cleaned to try and make my space at home safe and sanitary. She’s held my hair while I’ve been sick, tried to save me from falling on the floor fainting, and come to every single appointment to take notes for me. She’s helped bath me, dress me, drink water, and just sit up when I can barely move. She’s exhausted but never lets it show. She’s always been there for me and still is now. I don’t think I will be able to ever pay her back for the amount of care she’s given me. Maybe when she’s actually old and gray I will be able to just scratch the surface of giving back what she’s given to me.

My Dad: Dad, Daddy, Daddy-O, Father, CHUCK. My father is a strong man. He’s always someone who has my back. He may not be as familiar with how to help me during all this, but I know he’ll fight for me. He came every day to work with me while I still could to help me deal with the physical aspects. He never complained. He’s moved me into and back out of an apartment, and never complained. He won’t give up until we have an answer, a treatment, a solution, something. He’s the one who pushes me to get up in the morning. To eat something. To try and walk. He’s constantly trying to find a way to improve my situation. But it’s hard to watch him seem helpless. He’s having to learn things no father wants to, but he’s doing it anyway for me. He’s pushed as much as he can to help get medical teams on our side. He’s also probably paced a few hundred miles worth in the past few months.

My parents have given up their lives for me. Each in their own ways. I’m lucky, blessed, fortunate, and safe thanks to them. My parents have never given up on finding the source of the problem. They have begged, pleaded, and pushed over and over again to get me help. I know that they will do anything and everything they can to help me in this fight. They have always put me first, and once again have gone beyond. I’m out of funds, out of work, and out of commission. Yet I have little to fear. I know they’ll keep finding ways to get me the right, safe foods. They’ll find a way to pay for the hundreds of dollars worth of medications I need. They’ve stepped in to help manage the bills, pay them off even if they can. They’ve stepped in and stepped up more than anyone I know.

I may be scared a lot, but I try not to show it until I can’t anymore. My mother will sit up with me or stay in my bed (which leaves her sore the next day) just to make me feel safer or to let me rest. My dad has made at least 100 trips to stores trying to find what I need. He’s had to pull me from night terrors and nightmares. I don’t think I could be doing this without them or their strength. I don’t think I would even be here if it wasn’t for their love and support throughout this hell journey.

Love you guys.

It’s been a year. A year ago today I was headed out to the sunshine filled beaches of Hilton Head North Carolina with my mom. Cooler packed with beer and snacks, towels rolled up, sunscreen on, and chairs with an umbrella that wouldn’t blow away in the wind rented. We strolled the beach, enjoyed the water, swam with other people, and then BAM. The world changed. Everything about my life was about to take a radical left turn. It’s pretty shitty, as I think back on it, that the lifeguards didn’t post a warning about jellyfish in the water that day. It’s even worse that a beach lifeguard was unfamiliar with a Man O War sting, as they can be life threatening, and gave no real care or response to my plea for help. The amount of venom that I got injected into my hip was a dangerous level. I have yet to find a picture on the internet or a story of someone getting hit where I did and having the level of swelling and burns and being just fine and dandy.

This past year has been a nightmare and a curious adventure. I’ve learned more about myself and found strength I didn’t know I had. I moved out, and back home as a result of my injury. I changed jobs out of necessity, worked through extreme pain and memory loss, experienced unemployment, learned how to deal, once again, with a medical world that refused to look at the patient instead of the symptoms, and have been told MANY times to look at psycho therapy… I found strength as did my family in never giving up or accepting an unacceptable diagnosis (or non-diagnosis rather). I’ve battled insurance companies, doctors offices, billing offices, even the government for unemployment. For the first time in my life since I was 11 years old, I don’t have a job of some kind. I’ve had to learn to deal with isolation, loneliness, and, naturally, situational depression. I’ve gone through anaphylaxis, allergic reaction, reactions to medications, procedures that didn’t work, medicines that made me worse, the hell of coming off a medicine, and fighting to take myself off opioid pain medicine because I hate them so much. I’ve been through my first colonoscopy, another endoscopy, and enough blood work to probably save the Red Cross from needing blood donations for a whole day. I’ve had to re learn how to walk twice, learn to drive again, regain balance, find some level of mental functionality amid pain, and developed a real understand of the frustrations people with Parkinson’s experience. [Hand tremors suck] I’ve lost my taste buds and my sense of smell. I’ve lost the ability to cook for myself, to bake for fun, and even to go shopping. I’ve learned to use a cane, a walker, a wheelchair, and so much more. I’ve experience IV Ketamine to stop my CRPS. I’ve learned the daily pain of a chronic condition like that can bring back on.

I’ve traveled to see a doctor, fought with an urgent care doctor over a slow onset anaphylactic reaction for treatment, and finally been validated when it was confirmed by a research doctor that YES THAT CAN HAPPEN. I’ve been diagnosed with a rare disease that barely anyone knows about and even less understand, again. I’ve become 1 in 6 million (2 rare disorders at the same time with no known connection yet) and found solace in support groups of people dealing with the same things at me.

I’ve been through drug withdrawals, insomnia, 7 days with only 2 hours of sleep a night, exhaustion hallucinations, gastric problems and stomach pain. I’ve experienced tremors and muscle spasms, fainting spells, fading out spells, cataplexy, laughter instead of cries in pain, loosing the ability to eat, watching everything I try to eat come right back up, not being able to swallow water, and even not being able to get anything down. I’ve been put on and off around 40+ medications, had 4 MRI’s, 16 blood draws and over 300 labs, 3 minor procedures, 1 week long infusion session, 25 aqua physical therapy appointments, 90 doctor, hospital, urgent care visits, 1 upcoming Port placement surgery, and 1 very long year.

I’ve learned to be grateful for the small things. I’ve learned to be happy I have parents who can step in and step up to care for me. I’ve been fortunate to have them spend weeks of sleepless nights watching over me to keep me safe. I’ve also given up. I’ve given up about fighting, I’ve tried to throw in the towel and quit, but I have family who won’t let me. I have people who won’t let me quit yet. I’ve found a doctor who not only understands the difficulty of unknown and rare diseases and other people not believing them. I have a doctor who is willing to commit time to me, and spends his free time working to find the root of my disease. I am fortunate.

Today is the anniversary of the start of a really rough journey. There is no clear cut path to healing for me, there isn’t even really a plan. There’s no cure, no real “management” solution, and no real expert out there. But there is a sign for me. This is my chance to learn. This is my chance to become even more determined to go to Med school and change the way we treat patients. This is my chance to work as hard as I can with whatever little energy I get in a day, and never give up.

So maybe by this time next year, this post will not be about the chaos of the previous year, but the achievements and the plans for the next.

I guess I named this blog the right thing…

It seems like my CRPS is sorta under control. Normally those flares feel like hot, stabbing electricity, skin bulging, muscle tearing, broken bones. Now the sensation has changed. Before, I knew exactly what it was, where it was echoing, and so on. Couldn’t stop it, but I sure knew what it was.

Now it’s changed. Now the hot, burning feeling is coming from inside my bones. It radiates outward, spreads, aches, and eventually fades. Welcome to the bone pain of Mast Cell Activation Syndrome. The long and the short of it is this: unexplained severe bone pain with a variety of sensations. I sum it up to being where mast cells come out. See, the bone marrow is what makes your mast cells and other cells, but with over production of mast cells, they keep pumping them out like a factory instead of a custom order shop where you only make what you actually need. My theory is that my mast cells come on out and it hurts. But that’s just a theory.

These burning sensations are not like my previous hot flashes. Yes, at 24 and now 25 I get glorious hot flashes, so post-menopause ladies, I feel you on such a personal level. These burning flashes feel like hot flames racing through me at random parts of my body. Usually its short lived and almost always followed by intense pain. The confusing part about this is the pain moves. It’s like a toddler set loose in a toy store. They run from place to place to place and touch things, grab them, knock them over, basically be a normal, excited child. My mast cells are now children and I will name them as such. Essentially, one light, one cell, turns on for no reason and thus everybody else decides to act up. However, I have no energy, no strength, and virtually nothing extra to give these dysfunctioning cells to allow them to keep sending chemical signals. And thus it jumps around. Now I am no doctor, mast cell specialist, researcher, or scientist, but I did spend a hell of a lot of time learning about all of this and I like to put things into simple perspectives. For me, this makes perfect sense. Maybe it’s not the most scientific example, but it sure beats using a bunch of long, hard to spell for my spaced out brain, confusing words to explain it. Also it cracks my dad up.

All these sensations are overwhelming. It’s like I am on constant sensory overload and shut down [sleep] as a result. But hey, at least I am getting some sleep right? Missing my sense of smell and taste buds seems to be a gift right now [my extremely bland diet means nothing since it all tastes the same save a few rare instances of flavor and smells make me sick so this is probably a good thing right?] but my other senses are heightened as a result. Plus add in my body’s propensity towards pain signaling [thank you CRPS once again] and we have an over stimulated, under nourished [although my numbers are holding steady!] burning alive, patient who just wants a refreshing nap. It’s pretty frustrating. Not just for me, but for those around me. they can’t do anything besides turn on more fans [I have 2 always blowing on me] and throw ice packs onto me to try and help. It’s pretty sad as Georgia girl I can’t wait for winter…

Regardless, this is the one sensation I abhor the most. If anyone ever tells you they feel like their veins are filled with fire, their bones hurt like they are burning, or they feel like their nerves and body is burning with hot flames, just know how much energy it takes just to say that and even try to cope. Maybe hand them an ice pack…

Dear Heroes,

Yes you. 
Dear Mastocytosis Sufferers, MCAD Sufferers, Mast Cell Dysfunction Sufferers, CRPS Sufferers, Chronic Illness Sufferers,
You are HEROES.

A hero is someone who overcomes something, or goes through a trial or tribulation and comes out on top, or maybe they don’t but they grow and develop.  A hero is someone who does something selfless for someone else, stands up against something wrong, saves the day. A hero is someone who is idealized or admired for their courage, bravery, outstanding achievements, or noble qualities That’s you.

Every day you stand up and fight the most difficult thing out there, your own body.  You fight something you cannot see, cannot destroy or punch or remove, and really can’t “defeat”.  You stand up against doctors, professionals, judges, EMTs, nurses, even your own families. You fight for what is right for you.  You fight to be heard and seen for what you need. You are a researcher, a healer of yourself. You dig deep into what could help you or others like you.  You share your findings in hopes that even if it doesn’t help you, maybe it will help someone else. You advocate for yourself and those who cannot. You are a defender. You fight back against those who say “you’re crazy, wrong, not sick, it’s all in your head”. You defend yourself, your friends or fellow compatriots in this battle. You are an educator.  You teach everywhere you go. You inform medical professionals, you educate strangers in compassion, and you even teach those around you what STRENGTH is. You overcome, you fight back, you never give up. You are a hero. 

No matter how many times you get knocked down, you get back up. You have been knocked down by someone saying, “you don’t look sick” or “are you sure there’s something ACTUALLY wrong?”.  You’ve heard a thousand times, “is that even a real illness?” and “you can’t be allergic to EVERYTHING”. Someone always says, “just try X Y Z because this is the cure all and if you don’t do it then you aren’t even trying to help yourself and clearly you don’t care about MY opinion”. You’ve stood up to doctors dismissing you, ignoring your concerns, and giving up.  You’ve probably heard a thousand times to go see a psychiatrist, a psychologist, some kind of psycho therapy to “cure you”. And maybe you have gone to see them, explained all that’s happening, shown them your struggle. Maybe they listened and wanted to help you sort through the other problems, maybe they couldn’t help, maybe they even said “go see a medical doctor” to which you replied “I did, they sent me here”. Maybe they didn’t understand, but YOU tried.  You’ve had friends walk away, turn their backs, and give up because it was just “too hard” to be around someone dealing with something that rips away their lives. You’ve watched yourself be left out, whether necessity or just being forgotten. You’ve witnessed it all.  

You’ve handled loss.  The loss of yourself, your daily normal, your life, livelihood, and even your family.  You’ve lost your freedom, your capabilities, your self worth, everything. You’ve given up.  But you didn’t quit. You’ve never quit. Because you can’t quit. Not on yourself, not on those around you.  Even if someone and everyone else has, YOU haven’t. You’ve been put down, vilified, harassed, ignored, and ignorance has caused it all.  Not you. You’ve never caused this. You didn’t choose this. It just happened. You are the strongest person out there.  

You have had to fight every day for your breath.  You’ve had to change everything about your life, eating, food, clothes, travel, even breathing.  You’ve had to research and try and test out what could help. You’ve been scared, terrified of change and new things, because who knows what could happen, but you are stronger than that.  You’ve done it anyway. You did more than just give up gluten for 30 days or avoid chocolate for Lent, you gave up your normal life to save yourself with no clear end in sight. But that hasn’t stopped you.

  You’ve had to learn how to care for yourself in a way no one should have to.  Your caregiver has done the same. You’ve had to watch someone give up so much to be there for you, and it hurts inside.  Asking for help is the hardest to learn. Caregivers, you are heroes. You’ve taken a step back, a step away from yourself and given your all to another.  You’ve given up a part of yourself to become a part of someone else. Your love, your strength, your drive is our drive now. You push us, you remind us, you are there, and that’s more than we can ask for.

To the parents who watch their child go through this, you are a hero.  You’ve fought for them every moment. They are always on your mind. You’ve learned to show caution but not fear in front of them.  You’ve learned how to push and when not to. You’ve fought countless people that you know you’re right because you know your child and NO this isn’t made up.  You’ve dealt with criticism, frustration, sleepless nights, anxiety, anguish, and tears. You’ve learned to experience joy in the smallest things. You’ve knocked down every boulder in your path and fought and will fight for your family and your child.  You’ve shown your child how to be a strong human. You’ve taught them compassion and that love knows no bounds. You are a hero.

To those of us who were born with this, grew up with this, lived with this, you are a hero.  You may have known no different, but you’ve overcome. Your life has never been easy but you don’t see it that way.  This is your life, and you are going to live it. You’ve got more life experience than most people twice your age, more maturity than most adults, and an internal strength that knows no bounds.  You are an educator and a leader to your friends and everyone around you. You defy odds every day and never let it get you down. Because you can’t. Because if you give up, throw in the towel and quit, you’ve made a choice for everyone else around you, supporting you, and that’s not who you are.  You are strong, stronger than you know. You are a hero.

To those of us who lived our lives first then had it ripped away, you are a hero. You knew a normal.  You knew a daily life that was good and happy and way less complicated. Maybe it wasn’t always good, but looking back it was sure better than this.  You’ve had to change everything about yourself and your life. You’ve dealt with more loss than anyone. You’ve lost yourself.  The you BEFORE. Then there is the you now. Your maturity and coping skills have been tested time and time again. You’ve had to learn to ask for help again.  You’ve had to give up freedoms, normalities, work, school, even family. You’ve lost so much time and time again, yet you’ve never quit. Because you remember a time before it was here, and that’s where you’re going back to.  You may have the greatest determination of us all because you WANT that “the you before” back. You’ve had to upend everything and flip your world on its head. You’ve had to adapt and struggle with your own family, children, grandchildren, friends, coworkers, everyone around you.  You’ve had to educate, teach, push, prod, struggle, and crawl your way through just keep going. You battle daily to feel like yourself again. You battle people who see a change and don’t understand why you seem so different. You battle yourself over your wants and desires versus your needs.  You understand loss, love, and strength. You are a hero.

Your story is every literary teachers dream.  A true struggle and a growth by the main character, except there is no dramatic fight against the bad guys, no kidnapped person to save, no burning building or great mystery uncovered.  Firefighters are heroes, but only when they save the day does anyone really notice and recognize them. So here is your recognition. You are WARRIORS not victims.

To all the fighters, survivors, caregivers, and those who never give up, you are a hero.

Many times we hear about the “Spoon Theory” being used to explain depression and other mental health issues for people who don’t have them or experience with chronic issues. I’d like to adapt that theory a bit.

The basics of the spoon theory are that you only have so many spoons in a day and each activity you need to do costs a certain number of spoons. You cannot break them, split them, or magically get extra spoons. If you don’t sleep well or skipped a meal or forgot a medicine you loose a spoon. Add into that the cost of most activities is pretty high. Going to a doctors appointment is 4 spoons while making a meal is 3 spoons. Imagine trying to do both in one day, plus taking medication is one spoon, getting out of bed is another, and so on. The idea is really for people with chronic issues that SUCK the energy and life out of you can really limit what you can get done. Multitasking can be a far fetched dream, and things get left unfinished as there is a greater need for something else to be done.

In my case, I’ve been dealing with the spoon theory for years. Mental health has always played a huge role in where my energy goes. Often during my worst bouts of depression I would barely be able to get up and eat a meal if at all. The only thing driving me forward was school. However, I have a hidden blessing. Being Bipolar has actually worked in my favor. Often I would spend days with no spoons to spend, getting nothing done, barely making it. Suddenly I would wake up one day and have ALL THE DAMN SPOONS. We are talking like 25 spoons, I can multi task, clean the fridge, cook 14 meals I won’t end up eating, and I swear I’m not tired. It’s like I’ve borrowed my spoons from somewhere. Then tomorrow comes. oh… that’s where those spoons came from. I’ll be exhausted for days but hey I got it done right? On a side note of mental health- I try to look at the positives of it, because despite the horrific and debilitating things it can cause, sometimes a positive spin helps, or I get a good laugh. A good friend of mine is very OCD, but we agree its actually good in a few ways. She’s especially good at helping people organize when they need help [ME ME ME] and always neat and tidy. She’s the best at helping plan parties because she’s so detail oriented, and she’s found a way to take her “disability” and make it something good and useful.

So back to the spoon theory. This theory applies to ANY chronic illness. And I mean any. Day to day life can be a struggle. We don’t always show it. A lot of times we save up our spoons for when we know we are going to see someone or go do something. What you don’t see is the hours it can take to get ready to even go somewhere or have someone over, the anxiety over whether or not it will be a good day or a bad day, and the recovery period afterwards. Many times I present as intelligent, alert, chatty, and somewhat vibrant (if you knew me before this you’d think I’m a different person today than I was almost exactly one year ago). What you may not see is the passing out, the blood pressure drops that can result in my fainting or falling, the concern on my parents face as they try to discern if it’s dangerous or not, the tremors, the hours it takes to try to go to sleep, the vomiting, the pain, all of it. I don’t say all of this to induce pity but instead to drive understanding. It’s important it someone you know or love is struggling to be supportive and understanding as best you can. It’s a huge burden to ask. I find myself all too often not asking for help when I need it or ignoring friends because I don’t want them to see me like this. It’s hard to have a relationship with someone who feels like half a person. Just like we did with mental health years ago, we shoved it to the forefront of everything. Understand depression and anxiety. Trying to get people to see it’s not a choice. Today we need to do that for NON visible chronic illness.

Remember the AIDS/HIV disaster of the 80s? Where people panicked because you couldn’t see who had it and made crazy assumptions about certain groups of people? Okay so lets take away the assumptions and all the horrible parts and focus on the YOU CAN’T ALWAYS SEE IF SOMEONE IS SICK part. Think about cancer [because this seems to be the only thing everyone can relate too]. Before the diagnosis and treatment, people often don’t “look” sick. They still have cancer. Even when diagnosed, they may not display what we “see” as being a cancer patient or being sick. Once they start treatments it becomes more obvious. All too often there are people who are forget because their conditions don’t fit into this “sick” mold we have created in our minds. We focus too much on the “look” and not the feel. And no, we don’t always want to be asked “how are you feeling” because we always have to say “i’m ok” or “fine” when we aren’t. It’s a forced social norm and honestly who wants to start a conversation with doom news of “not good today, I fell yesterday and now my body aches and I haven’t kept down anything solid in 2 days”. That will really set the mood. When we do comment on not feeling good, the conversation always redirects back to “why” and leads to this conversation and it’s “all about me”. You can see the spiral that begins with a completely kind and honest question. And no, we don’t want to hear “you look so much better today, you must be feeling good” because all too often it’s a mask or that last little push of energy we use to just try and seem ok. What we want is to ignore it for a few moments. I often find myself living vicariously through the stories of daily life my friends tell me. YES I want to hear about the student that spilled paint on the kid next to him. YES tell me about how your boyfriend burned pasta again. YES let’s talk about something funny. I don’t mind being asked about how I am feeling, it’s kind and polite. But just understand that when we say “I’m ok” that’s not always true.

So what’s the takeaway from this long rant? Well, honestly, just one thing. Understanding. Be understanding. It’s hard if you’ve never dealt with something like this to truly “get it” but you can still empathize and try to understand why what you don’t see plays a huge role in our daily lives. And that’s all we are asking for.

Withdrawal

We always spend time talking about symptoms and how we get better. What we never address in illness and heath is what these medications actually do to your body. Take one away and suddenly your body doesn’t have it any more and it panics.

When you think of withdrawal the imagine that comes to mind is a thin, strung out gaunt person and street drugs. What we don’t think of is the average Joe, normal looking person whose going through all those same horrible symptoms. It’s not always visible. So what’s withdrawal from a medication like?
Well friends let me tel you
It’s hell

I go in a cycle, like most people, day one is hell. Every horrible side effect you can imagine happens, puke, migraines, gastro issues, nausea, dizziness, all of it. Day 2-3 it keeps up but to a lesser degree. Then we go on to the psychological symptoms on day 4-7. Think everything from confusion and spaciness to depression and hallucinations. But what’s really important it to know it will improve. All of it sounds terrifying and in the moment it sure as hell is; but then it slowly fades, every day is better.

Now withdrawal is a multi step process because a few things happen:
1. you are decreasing a drug and removing it’s contributing factors from your body- this means some thing is “missing” and your body now has to figure out how to use it or get it itself
2. Titrating down slowly is safer because you can have those symptoms but to a lesser degree and safely come off a drug while Allowing your body to figure out how to work on its own (think those steroid dose packs we all get for sinus infections, take a bunch day one then Reduce day by day
3. Even after you stop taking a drug, the half life of it can still affect you. Okay so what’s that mean? Well drugs hang out in your system for a while, the half Life is how long it takes for the medicines concentration in your body to reduce by half. Some drugs it’s 30 minutes, other times is weeks. Zonisamide [my 39 day cycling anaphylaxis adventure] has a very long half life of almost 3 days. This means that the built up effect (how much is in your system, how much has built up, and remained over time) is pretty large,  and it takes a long time to move out of your system. Don’t forget to consider that the built up effect, and that edema, adipose or fat cells, and other organs can hold onto cells containing trace amounts of the drug and can stay there for a while if your body isn’t flushing properly (and subsequently release when you do get them moving). Let’s add into that that those trace amounts can still linger and affect you for days if not weeks after you discontinue. 
4. The side effects are not permanent but they feel that way, and there can be lasting effects for a while, but permanent damage is not likely. 

Coming off any medication should be done under medical supervision (if we want to use the stereotype think about the dangers of coming off heroin here) as there are some dangerous side effects that can require medical attention. Sadly, few doctors are prepared or willing to go through this process with patients who are not in a drug rehab program or the hospital. It’s a long, slow, constant process. It takes hours and weeks, lots of commitment and time, and it’s stressful. Patients needs constant supervision and care from someone (which is exhausting) and it’s mentally exhausting for the caretaker as well as the patient. You can’t fix it or take it away for them and you have to watch someone suffer while feeling helpless. Unfortunately the solution for withdrawal is usually just putting the patient back onto the medicine. Or replacing it with another similar one.

I was the patient that could easily start and stop any medicine. Pain meds, opiods, antibiotics, steroids, muscle relaxers, you name it. But my body reached a breaking point and now here I am experiencing withdrawal.

I watched myself disappear. Literally In the thralls of withdrawal, plus my system wide shut down, starving from Mal-absorbtion, physically exhausted, and I was having out of body experiences watching myself fade to gray.That was my first psych symptom. Stopping the medication suddenly resulted in 72 hours of no sleep, vomiting, migraines, vertigo, horrible side effects, dizziness, fainting spells (and not the kind you see on tv- fading out was a better name because I would sorta just collapse, blood pressure drops, I can hear and see but I can’t respond.) And delirium from no sleep isn’t a nice addition. I was in a perpetual state of trying to find out if I was awake or asleep. I’d startle out of my sleep but not be able to move and have to lay there and really figure out if I was still asleep or not. If I was asleep and I tried to move, it would create panic due to sleep paralysis [what keeps you from hurting yourself in your sleep]. If I was actually awake, I could get up and be okay. I started having nightmares and night terrors (waking and sitting straight up heart racing and scared). The worst night terror was while I was asleep thinking both my parents were in the room with me and I woke up and crashed. The whole room swallowed me into blackness, I chocked on vomit that wasn’t there, a darkness swept over me and I felt my heart stop beating and I couldn’t call for help. I dropped into death. I sat straight up out of bed and cried for hours. I couldn’t get myself right. I was terrified. I saw the image and felt it happen again and again for days. Everywhere I looked I saw it again. That’s withdrawal.

I couldn’t go off to the bathroom alone. I needed help and would often fall or my legs would give out. That’s withdrawal

I had to monitor my blood pressure constantly and have my breathing checked all night by an exhausted parent because my breathing became so shallow and I was afraid I would stop breathing in the middle of the night and choke. That’s withdrawal

I had to balance taking new medications to control symptoms and new symptoms we couldn’t treat because of the risks. That’s withdrawal.

We spent days writing meticulous notes on every single symptom, side effect, interaction, experience, and timing of all medicine day and night to send to the doctor to review and tell us what was dangerous. Hours and hours spent trying to remember things and pay attention. That’s withdrawal.

Despite all of this going on, if you saw me in the street, I wouldn’t look “sick”, just like I’d missed a few nights sleep. If you tried to talk to Me, I’d sound like I was up writing a paper all night or out partying or just tired or maybe off my meds, but I don’t look “sick”.
I hadn’t eaten a full meal in 3 months, but I don’t look thin and gaunt (thanks edema and steroids). I couldn’t keep anything down due to dysphasia (swallowing issues) and was constantly dehydrated (thin liquids wouldn’t go down) but I didn’t look sick.That’s withdrawal.

If I told you I was going through withdrawal your first thought would be what street drug was I coming off, not what symptoms I was suffering. And that’s not your fault, it’s actually the war on drugs fault, medias fault, and educations. We teach children through media and school about drugs but only that they are bad and being strung out on them is dangerous. We don’t talk about the medicine you or your parents may take every single day and those risks. We say withdrawal is what happens when you stop doing illegal drugs and it’s dangerous and hard: But when do we discuss what it’s like for someone whose chronically sick who need to stop a medicine? We teach our children about mental health, and that it means medicines, therapy, treatments, and getting help. But we don’t talk about needing to change a medication or coming off of one and it not being forever. Think of situational depression. A bad circumstance happens and you’re stuck. You need an antidepressant to get you through that tough time. But it passes and things improve, how do you get off it? Where do we talk about the fact that your body’s been given happy chemical stimulants and now it’s going away and your body’s gotta figure it out solo? Where do we teach that it’s as much an emotional roller coaster as a physical one?
Simple answer- we don’t. We ignore it. It’s not relevant at the time, it’s in the future and not the current issue. 

Maybe the only time we even consider “residual” effects is with chemo.You tear down someone’s immune system and pump them full of toxic drugs and rip apart the body to kill the tumor cells. Their bodies have been damaged, and the effects last. Taste bud issues, neuropathy, pain, nausea, and so many more lasting effects. And there you are, miserable, with residual side effects and more medications to treat them and subsequently withdrawal side effects. It’s mass chaos in the body. But despite knowing this, we still treat it the same way and try to improve all the other aspects by prepping the body with nutritional advice and other doctors and specialists getting involved is helpful.We need that for ALL medical conditions. All medicines.

But how did we get to this point? Where medicines are causing problems and interacting with each other (all too common and not always caught by doctors despite it being a simple google search). Simple- over specialization. We tell doctors to specialize and specialize and focus on their department, not evaluate the entire patient and everything that’s going on with each patient. And so what we end up with is patients being left on drugs causing dangerous interactions and no advice. You see a GI specialist for a GI problem and they tell you to take a medicine. You improve and you don’t see the doc again. Do you stop taking the medicine? Who advises you on that? Your primary? But they don’t specialize in that area so they ask you if it’s helping and keep you on it. How the hell do you know if it’s working or if you’re fine without it?
One doctor puts you on a medicine, another chastises the choice. Does anyone communicate anymore? No, there’s no time.

So here we are, patients are stuck on medications they need to come off and no one can help them. No hospital will take you in unless you’re admitted by a doctor willing to treat you. Who has access to around the clock care to do this solo? Very few. Whose monitoring vitals? Are you a trained nurse? Is your significant other? Where’s the care for these patients? And amid this chaos we have people trying to handle that and another condition, another ongoing problem. They are left to hope their doctor caring for one condition can guide them the rest of the way. And sometimes they can and sometimes they can’t.

I want to see a new specialty. Doctors who focus on taking patients off medicines, helping them with interactions, treating co morbid situations. The only doctors out there for withdrawal are for addictions, not the regular patients stuck on this crap. 

We need this more than ever. And we need to re frame how we view sick, how we view withdrawal, and fundamentally how we view health.

I gotta write this to even comprehend it….

Okay so Cromolyn, or Gastrocrom [depending on if you have good insurance and can afford it] is this sorta medication for MCAS, Mastocytosis, Mast Cell Dysfunction, and basically any of the Internal Mast Cell disorders. It does work for the subcutaneous [skin] based ones, but we are just going to focus on the one I have.

Essentially its either a nasal spray or an oral solution that works to turn off the insane amount of Mast cells in the body. But that’s about all we know. As a result of this condition being extremely rare and most people who do have it have unusual symptoms that don’t always fit into a set criteria, testing this stuff didn’t seem to go as well as planned. Unfortunately with allergies or allergic like reactions, anything and everything can trigger them, including the treatment for it. So since 1987 there’s been something like 4 trial runs and testing and basically everyone had some kind of reactions. But that’s okay, the risk didn’t outweigh the benefit. So here is the tricky part. There are like zero directions on how to use this stuff The package isn’t clear, doctors aren’t always clear, and for a reactive system, thats dangerous.

So based on my own trial and error fail and now the progressive increase of this medication, I thought I should pass on the tips, instructions, reactions, and basically everything we learned in hopes it can help someone else. Because had I not reached out on a facebook group of people dealing with this, I would have had ZERO idea what I was doing wrong and could have seriously gotten hurt [well like cell activating sick hurt not a literal broken bone].

BASICS: Cromolyn is usually an oral solution you must DILUTE in order to take. it’s supposed to go on an EMPTY stomach 4x a day. Now for some of us with dietary problems and other gastro issues [basically everyone..] this can be tricky so try to schedule it out. It should be taken at the same time daily AS MUCH AS POSSIBLE. And you should NOT suddenly stop taking it. This medicine has a building effect which means you have to keep taking to see if it works and you cannot stop suddenly without risking a very adverse effect. YOU MUST DILUTE correctly. ONE SINGLE AMPULE is a full dose WHEN mixed with an additional 8 oz of water. It’s about a teaspoon full of Cromolyn liquid [this is important later]. So just remember 8oz liquid to 1 teaspoon dose.

To Use: This is where having someone monitor you and your doctor involved is VERY important. In some cases, you need the full huge dosage right away, but typically that’s way too much for a body to handle. You should [now again I’m NOT a professional, but I can read all the insane amount of information on this] ideally work your way up to the full 4 doses a day.

Here’s where I went WRONG: We didn’t have the 8oz or ratio instructions. My dad put it in like 3 oz of water and I chugged it down. Rinse and repeat for a total of 6 doses in 36 hours and suddenly I have heart palpitations, a tingly metallic tongue taste [I don’t have taste buds remember? So explaining this was hard. I described biting tin foil…], a seriously woozy blood pressure drop, dizziness, headache, I basically just tuned out and starting having some weird fainting like spells. This was an adverse reaction to the medication being too concentrated and too fast. Luckily, a family friend and long time nurse stepped in and told us to discontinue until we spoke to the doctor Monday. What’s key here is I could stop because we hadn’t built the effect yet.
NOW here’s how we fixed it: Titrate slower.

After speaking to the doctor they confirmed it was an allergic reaction likely to the quick increase in medicine etc. So to combat that we started by taking only 2 oz worth of the dose and slowly increasing by 2oz every few days. Here’s an example: Day 1- 2oz total of the solution consumed ONCE. Day 2- 4oz total of the solution consumed at TWO different times of the day. Day 3- 6oz total of the solution consumed at THREE different times of the day. And so on a so forth slowly increasing each dose from 2oz to 4oz and then each time of the day increasing, etc, etc, you get the point. But, and there is always a BUT, you cannot premix the solution and save it for later. So we broke out the ratio tool and measuring spoons. As long as the ampule of Cromolyn is not diluted, not refrigerated, and kept chilled, you can utilize the dosage during a MAX of 24 hours. [this means where you are taking 2oz at THREE times a day you will be consuming a total of 3/4 of a single Cromolyn ampule dose. This can help cut down the high cost of the medications. So again the ratio is 2 OZ water to 1/4 teaspoon of solution.

MAKING THE MIXTURE: The ideal way to make and dilute properly is to first put the ampule amount[ entire one or a portion as long as the RATIO works] in 1/2 of the water that’s slightly warm, then add the other 1/2 of water that is cooler for a room temperature liquid. This means if you are going tot AKA a 2oz dose you will NEED: 1 oz warmer water, 1 oz cooler water, and 1/4 teaspoon Cromolyn. Rinse and repeat. WATER ONLY- this stuff binds to anything else so empty system, no juice, just water.

SIDE EFFECTS: Well see there are a ton of those and it’s pretty hard to distinguish whats a reaction to the medicine, whats a reaction to just taking something, and what’s going to happen anyway, HOWEVER there are some common ones that you need to be aware of because they are actually the dangerous ones. Coughing, difficulty swallowing, chest tightness, rash and hives, wheezing, rash, and sometimes you do get a topical reaction. These you need to see a doctor. The common, NON dangerous ones are things like headaches, nausea, diarrhea, stomach pain, muscle pain, and sometimes a mild rash. So basically anything can happen etc. My blood pressure goes haywire when I take mine but we monitor to keep it safe.

The OOPS: So since we gave me a too concentrated amount you have to flush your system gently. In my case, the recommendation was to drink another 8ooz glass of water promptly, then a second over the following 15 minutes. This doesn’t mean a reaction or adverse effect wont occur but it should help. It can also “wash” out the positive effect but better safe than sorry. Eat something after the 30 minute mark as well.

The Takeaway: Basically this drug is supposed to work on Mast cells and calm the system down [AKA tell the two-year-olds running my body to calm the F down and get a job (they don’t really have a role at this point, they just keep pressing the GO GO GO ON ON On switch for panic mode inside)]. However, in doing so it can trigger other side effects as Mast cells are a bunch of unpredictable little fuckers. As with any new medication, talk to your doctor, speak to your PHARMACIST [they will save your life], and follow the directions given to you. Every single case is different. Every single side effect and symptom will be unique to each person so my experience is NOT considered typical or standard. I urge anyone going onto this medicine to make sure you speak with your doctor and pharmacist about ALL medications you are on, even if they say not to worry, as drug interactions are common and with Mast Cell Dysfunctions then can be much more volatile than normal. In my case I ended up with oral thrush from something and later learned I am just at a higher risk of infection because my body isn’t going to send the right cells to fight the right thing. As a result, we need to monitor all new symptoms closely and make sure to get treatment quickly.

All in all I’m glad this drug exists, just disappointed in the drug company for not trying to further research or develop this sucker. Even for a tiny population of us, this drug is one of the only treatments out there for a very fragile group.

Stay strong my friends

Mastocytosis. Or in my case, Mast Cell Dysfunction, is the new name of the game. That changes things.

What does it mean? What the hell is it? Why didn’t anyone else figure it out? Well that’s a loaded question. Essentially it all comes down to inflammation. Mast cells are a normal part of everyone’s body. They fight off allergic reactions and respond to danger in the body. My problem though? My Mast cells think everything is dangerous and keep attacking.

I’ve been having such a hard time even writing this because of the lack of strength I have now, but I need to write this to break it all down and process. Here’s the 411 abridged version. We traveled to UNC to see a new doctor who is both a researcher and a medical doctor. After a number of blood tests prior and his examination, he related my condition to a finding in Japan of surfers and divers being stung multiple times by Blue bottles and developing a Natto allergy [fermented soybean] out of the clear blue. New research is showing that the skin biome and the gut biome are linked and impact one another. So operating under that theory, the Man O War sting triggered a Mast Cell activation/ Dysfunction that has emerged in all these strange ways. Everything from the sudden stomach problems, to the abdominal pains, to the crazy allergic reaction he’s never seen before in my mouth, were all signs of those cells triggering. Now here’s the really confusing portion. Mastocytosis or Mast Cell Dysfunction usually shows elevated trypase, histamines, allergy markers, white blood cells, etc. etc., I do not present that way. However, just because it’s not on the top of my skin or in that particular blood sample, doesn’t mean it isn’t occurring. The doctor believes that even if we spent a decade trying to unearth every biopsy, blood sample, and test we could do, we wouldn’t be able to pinpoint what exactly is the difference because we don’t know what to look for.

So what does that mean for treatments? Well CRPS is still at play here. It is a known autoimmune, auto-inflammatory condition that has been seen to link to Mast cells, but again in unknown ways. The current treatment plan is a hefty dose of steroids to stop the constant reactions, a stomach muscle relaxer to keep the food items down, and a medication called Cromoyln. Cromolyn is one of the only Mastocytosis treatments out there and works in around 25% of cases. It takes between 2 weeks- 2months on a full dose to see if it is indeed working. But we’ve already run into a problem. Since traveling back from UNC my body has kinda just given out. Even though the nut allergy and other food allergy panels came back saying I’m not actually allergic to things, we have to operate under the “epi pen allergy reaction any time any where” protocol with everything around me. Like everything, from temperature to moisture to air flow. Add that into the fact I’ve really not been eating in over 2 months, my body is nutrition starved and crumbling fast. When we started the Cromoyln dose, we had no idea how far apart they needed to be spaced, how diluted, how quickly can you start taking it. All of those questions result because NO ONE HAS THIS FRIGGIN DISEASE. There aren’t enough people to get a really effective study.

So suddenly we shocked my body with steroids, and this crazy new medication and the world flips upside down. Metallic taste in the mouth [ok I can’t really taste it but it reminds me of biting tin foil constantly], chest pain, burning from the inside out, hot feet, dizzy and lightheaded, shaking, vomiting, nausea, you name it. And we had to stop and go slower taking the medicine. So that sets me back even further in the recovery time line. Now lets pile on some more. Sleep isn’t happening anymore because none of the medications work. Taking my daily medications is a round the clock, 3 person ordeal to keep it straight. Every time I eat something, 10-20 minutes later I’m choking on it trying to get it to go down. I’ve passed out, puked until I couldn’t hold myself up right, wheezed my way through a night, and straight up watched the world flip upside down. Now if that’s not enough to make your head spin, trying being my parents watching this and have zero idea what the hell to do. And sadly there is nothing they can do. My vision will go blurry, the world goes monochrome, nothing interests me, and things seem to move in slow motion all while just trying to sit up. So times I’m lucid as hell [right now is a bright light but I can hardly remember what I have already types] and sometimes I don’t know where I am. Sometimes food is fine, sometimes I can’t even swallow. My head will hurt and I know my circulation is low or my blood pressure has dropped or the blood sugar is too low, but there’s nothing we can really do about it despite trying. No doctor could do anything but try to stabilize me and send me off home. Fluids? Check, we’re really pushing those as much as we can. Bland Diet of soft food? Check, I really am starting to hate bagels and mashed potatoes, (even flan has gotten boring too). Low Histamine diet and low stress environment? Huge Check, there’s literally nothing to do but try to read or watch a movie [if I can pay attention]. Hypothesis about the world? Sure that’s going to happen anyway, I’m bored! But what else is there. The worlds kinda lost its sparkle.

But enough about the woe is me. There’s plenty of that to go around. Let’s look back at this Masto-Cyto-Craziness and break it down a little further. There are a whole bunch of different kinds. Typically, this condition is seen in people with sever sensitivities or allergies [I have like the lowest score ever…] and frequently in children or older adults [55+]. Typically in children it’s a strange rash and goes away on its own after some time. Adults, not so often. These mast cell collections gather all over the body. Anywhere form the gut, to the bone marrow [most commonly found in there], to the connective tissues. They stand on hyper alert like a mother protecting her babies, and swoop in to stop reactions, by attacking what it thinks are bad, dangerous invaders. Except there are no invaders, or at least dangerous ones. In reality it’s usually just the body being normal, circulating some blood, digesting some food, breathing. So we are back to a system wide attack on my own system. This creates a cycle of sorts where it’s a delicate balance of shutting off the ability to react while preventing it from finding new ways to react to things. The best way I can describe how it feels when it kicks on is like every single neuron inside of me flipped a switch and forgot how to body. I burn from the inside out. Inside my bones, my throat, my chest. My throat forgets how to swallow, my stomach how to digest, and even my chest seems to have a problem breathing in air. But those are just the symptoms I can report. You cannot physically see the esophagus struggling to swallow unless you have an Xray, or watch the burning from the inside out occur. So unfortunately, many patients with this condition get pushed aside and told to go to therapy [DOES THIS SOUND FAMILIAR CRPS FAMILY??]. So many other patients with this condition have these symptoms too [It’s like reading my own diary when I read about what other people are experiencing and describing in ways that would only make sense if you’ve had it].

But the facts and symptoms and science are all here. Just because this case doesn’t have those “high level markers” or known sarcoma cells that can be easily seen doesn’t mean it isn’t just as risky and dangerous. And without more people actually looking into this, there is no treatment or plan that will change. There is a good chance I was born with this condition and the jelly sting was the triggering event. That monster level dosage could have flipped all the switches and here we are. It’s well known that people with this condition, especially if its a genetic defect, may not have a triggering even except to venom or poisons. So now where do we go? Well, I go on trying to find the positivity in things. Remind myself that every day might be better than the last and if we go backwards, well that means tomorrow is just going to seem all the better.

All I can say is thank you to the friends and family who have stepped in to be there from my family and I. I hate being so out of it and dazy sometimes I don’t really know there there or get fairly lucid and then zone back out, but thank you. Thank you for calling your doctors, and friends of doctors, and so many other people to look at this chaotic, almost impossible tale and trying to sort it out. And thank you to everyone else who has stuck around. This sucks. It really does. My parents didn’t get to really even enjoy the 4th of July because they were running back over with my neighbor to stop a vomiting episode with me. But the fact we have the kind of neighbors and friends who will drop what they are doing just to provide that shoulder of, it’s going to be ok, it means everything.

At some point, when my head gets little less foggy, I’ll rewrite this with more clarity and much less of a “stream of sorta consciousness” vibe.

Stay strong my friends.