A Journey into a Chronic Illness Survivor: Mast Cell Activation, Fibromyalgia, Interstitial Cystitis, Osteoarthritis, A blog of what has helped and where I go from here.
Swinging an Easter basket in one hand wearing her new yellow frilly dress, and black shiny patent leather shoes running through the tufts of thick green grass, searching frantically for colorful candy filled plastic easter eggs, that was me. Each egg found would come with candy, money, or a prize, and never left a recipient in disappointment with each brightly colored find. Family who hid the eggs would even get devious, sometimes you had to search high and low, even though I was a shorter version of most humans. Easter was so much fun! I also learned an invaluable lesson from Easter Egg hunts. Never leave any stone unturned, check every nook and cranny, even check the gutters and trashcans.
My search for knowledge, sincerely comes from what I learned Easter Egg Hunting, and I implore you and our younger generations to do the same. When it comes to your health, when it comes to life, or anything that you need to gain knowledge for or from. One valuable piece of wisdom my father imparted on me as a child was, “No matter what the situation, your EDUCATION can never be taken from you. No one, the only one that can deny you EDUCATION is yourself.” I’ve carried that with me forever, and I share that sentiment with any human being I can.
My search for knowledge about my health, started at home. Gutters were first, I started looking at my bowels. What I was consuming and what was coming out are VERY important. Then, I began to search higher. Once I knew I wasn’t poisoning myself, to the best of my knowledge, I got online and started Googling. The one thing everyone tells you not to do, but remember, I don’t listen. I was looking for answers on how to heal my brain, and how to thwart my Mast Cell reactions and all the histamine my body was producing. I needed to do something and pronto.
I know what you are saying to yourself, “Why didn’t she go to an allergist?” Funny story, I did that too. I was allergic to practically everything, and then I was allergic to the steroids that was supposed to counteract the reactions to the shots. I went in more miserable than when I came out. It wasn’t working, or worth the misery I was putting myself through. All the allergist wanted to do was keep giving me the shots, even that doctor didn’t really look into WHY my body seemed to react to EVERYTHING. I fired that doctor too.
My tunnel of light was closing quickly, it’s hard to explain. In a sense, I knew I was losing my thought processing ability, I was in fight or flight mode, just trying out how to figure things out, to save my life. (This also raises histamine levels, cortisol levels, and sends you into a stress histamine response as well. With each waking day, I knew I was step closer to losing my grip on reality.) At one point, the only thing I could manage to do was crossword puzzles, and that took FOREVER just to get one done. I used to be an ace at those as a child, I could have one done in less than 3 minutes.
Popped open my laptop and went online to find “Easter Eggs” of information. I searched many things, but educating myself on histamine was the start.
To know me, is to know the banana story. I am a survivor of a lot of things, child abuse (not at the hands of my immediate family at home), I am also a survivor of domestic abuse as an adult, on more than one occasion. Emotional, physical, you name it, and I’m also a survivor of bananas.
I never wanted to disappoint my family as a child, it was of the utmost importance at this tender age of like 4 or 5 that I never disappoint. One morning having breakfast with my dad, he’s cutting up a ripe golden banana to go on his cereal and decides that he is going to share the other half of his banana with me. After all, we had figured out for some mythical reason, I had NEVER had a physical banana until this age, I have had baby food, banana candy, banana flavored pudding, but not an actual banana.
So, I start chewing up the banana. He asked me if I liked it, and I nodded my head, he told me to, “Hurry up and finish.” so we could retire to the garage, so I could color and he could work on his racecar. I crammed the rest of the banana in my mouth, grabbed my crayons and coloring book and headed out the door. Again, like I said, to know me, you have to know the banana story, because it was the QUIETEST, I have ever been in my entire life, until I started being swallowed up by my demented bliss in my 40s.
Vividly I remember, that day I had chosen to color a lion’s mane in my coloring book rainbow in color. Bible study we had learned about the coat of many colors. I especially loved Dolly Parton when she sung her song about said coat. So the rainbow mane was born that day. I’ve always been a fan of rainbows and Rainbow Brite and Strawberry Shortcake, that will explain my hair colors that change with my every whim. I wanted to have all the colors, all the time.
I sat there, with that banana in my mouth, gagging, my mouth filling with spit. I tried to swallow several times, only to find the gagging made my eyes water, and then I couldn’t color. I don’t know how I felt a comfortable point, but for FOUR ENTIRE HOURS, I held that banana in my mouth, as my dad hastened on with his work. Until it hit him, he came over to check on me, “Misty, are you okay?” I nod my head, “Are you sure? You haven’t said a word for hours.” Again I nodded, then gagged. “Open your mouth. What is in your mouth.” To which my eyes welled up with tears as I start gagging as I stick out my tongue full of mashed bananas. “Spit it out for pete’s sake child!”
You will never learn patience, or the importance of communication, unless you have held a banana in your mouth for four hours. Trust me, at a very tender age, I learned it was even more important to be able to communicate your needs and the needs of others that day, and a great deal of patience on being rescued in a most dire situation.
As you can see, because of bananas, I had the patience to stick to my guns with my illness, and continue to fight every step of the way, even in darkest moments of me not being able to communicate very well. Even though I’m not really allergic to bananas (it’s just a texture violation), I will whole heartedly tell you I am. I even tried to eat bananas while pregnant, ripe, green, it didn’t matter… it’s instant nausea to me. However, I can make a badass banana cake, banana muffins, banana bread….just not consume a raw banana.
If you ever wanted an excuse to be allergic to exercise, Mast Cell Activation Syndrome and Fibromyalgia are your friends.
Desperate for answers I employed a friend to follow me to this giant diagnostic hospital for answers. My family physician thought it would be time for me to visit a Rheumatologist. Considering the options that I was running out of, I opted for the closest facility.
Neat fact, I should have opted to be dumped at the front door, because just getting to where we needed to be in that building I wanted to curl up in a ball and die. I do have to say, my friend opted to get me a wheelchair, but I’m a little stubborn about resorting to that when my legs aren’t broken, they just hurt ALOT. By the time we got to the waiting area, I have nothing left in my reserves, exertion of any sort would make me sleep for days. I wanted to cut off my feet they hurt so bad. When I would get overheated, I couldn’t breathe, I’d break out in a weird rash, sweats, EVERYTHING on my body HURT. I was lucky if I wasn’t having Parkinson’s like tremoring, and walking with all the physical pain on top of the random neurological symptoms was HARD. I was 40 at this time, (before my actual dementia diagnosis I believe) and I’m hunched over with a dementia type gait, because my nervous system has had ENOUGH, I’m shuffling around like I’m 80-90 yrs. old like I’d lived my best life already, I’m just getting started!
I got to visit the doctor along with my huge 4″ binder file that was forwarded to them before I even attended the facility. I was sent for random testing, then the Rheumatologist walks in starts poking me, and talking with me, and EVERYTHING she touched hurt. Oh…you have Fibromyalgia. Oh great, I thought to myself. This doctor quickly leaves the room and informs me I’m to see another person at another facility in an hour. “ANOTHER DIAGNOSIS, that people think is a load of total nonsense”, I thought to myself. (I only had a few believers in my small circle of loved ones that I was even ill at all.) I used to be one of those people that didn’t believe Fibromyalgia was a thing. In a few short minutes I was ever so sorry for EVER thinking that way, because when you look at people with chronic illness, sometimes YOU HAVE NO IDEA there’s anything wrong, and now I WAS ONE OF THOSE PATIENTS, talk about eating a HUGE PIECE OF HUMBLE PIE.
Clarification is needed at this moment in time. Apparently when your brain shrinks and you start to have pain issues like I have, your brain is the central (computer) of your nervous system. It runs all of the things, including the nervous system that is all those tiny wires that go all the way to your fingertips, toes, and in your skin. Well, when they get mad…. you’re just done. Just sleep is what my neurologist had told me. The only thing that will make it calm down is to hit the reset button on your personal computer (brain) so it’s time you sleep. Let me tell you, SLEEP was my OTHER hobby already, but the guy isn’t lying. (Note: When I mean sleep, I was taking naps throughout the day, because I had some insane insomnia at night, I was not actually getting a full 8 hours of restful sleep a night and that IS WAY MORE IMPORTANT than napping.) Later on, I would figure out that sleep is a big deal when you are basically experiencing neurological pain and neuroinflammatory processes, but I wouldn’t learn that for a long time later.
Back to the whole big diagnostic hospital event…. they sent me to see the actual REAL NURSE RATCHED in the flesh. At least that’s what my friend and I named her. I sat in front of this woman, as she spoke down to me like I WAS SEEKING MEDS. I had already told her my journey, and shared with her I WAS ALLERGIC to all said NARCOTICS, and ALL I WANT IS MY LIFE BACK, and explained to her, that I NEVER SIT STILL until I got sick. I WANT MY LIFE BACK without the drugs! This woman for real, asked me straight up, “Have you tried YOGA?!” I don’t remember the colorful things that followed but I did sum it up, we are wasting each other’s time and left. I WAS SO ALLERGIC TO HER JABBER, I just wanted to go home.
“People with fibromyalgia experienced significant pain and fatigue in the exercising muscle during recovery from low-intensity and short-duration resistance exercise, with greater pain during concentric contractions.” states the PubMed website.
Observational Study posted about Localized Pain and Fatigue During Recovery From Submaximal Resistance Exercise in People With Fibromyalgia
The stress just made me hurt worse, and I was over the day, and so was my friend to be honest. Obviously, that physician isn’t aware that Mast Cell Activation Syndrome makes you ALLERGIC to exercise and physical exertion. (Little did I know that basically, Fibromyalgia gave you the same symptoms after exertion too.) I guess I feel as though our medical system is flawed because when new illnesses are identified there should be some type of education about it, and there is. Some people receive it, others do not, that goes for both patients and physicians; there’s a disconnect. However, it’s the free will of the physicians you employ on whether or not they choose to continue to educate themselves and indulge in educating you in the illnesses you are diagnosed with. In this particular experience, I received a diagnosis with no education, then sent to Nurse Ratched to ask me if I had tried yoga, with no backstory or education as to why I needed it, or the benefits to it and the diagnosis I had just received a few hours before. I was confused, tired, angry, and in excruciating pain, just to make the trip and the walk into these facilities to see these people.
Remember, physicians can be hired and fired too, and you can get second opinions. Just because you have seen one doesn’t always mean you take their word as the written word of some saint in a book like the Bible. Trust your instincts and will to live!
Looking back on this experience, it was the start of when I began educating myself. In hindsight, I just got so mad that I still knew nothing when I left. Indirectly, it sent me into a domino effect of healing. First, I started reading, that was neurological stimulation even if I read only one paragraph a day, if you know, you know that brain fog is no joke. This in turn exercised my brain just enough to remain in the real world long enough to continue to strive for another few paragraphs the next day, until I was reading solidly again. Second, I did figure out that any type of exercise is better than no exercise, whether its walking in a pool, doing a sauna, just light stretching, or yoga, or simply going grocery shopping it stimulates oxygen in the brain and that was particularly important for my central nervous system. Do I exercise? NO, but I did force myself to remain as active as my body would allow, and even now I still overdo it, and have to sleep for a day or two. Has the pain improved? Absolutely! It doesn’t happen overnight, but out of pure stubbornness you got to start somewhere, right? I did.
ALLERGICTO YOURBULLSHIT 