Looking Back to When MCAS Began
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| Same person, but so many different "faces" |
One can not just start writing about living with Mast Cell Activation Syndrome (MCAS) without first going through their years of symptoms beforehand...or can they? I'm sure it's possible, but I'm not one of those people who can. If you are a person who receives any type of text message from you, then you know I don't just write simple sentence answers. 😉
During this gallbladder removal time in my life, Jim and I were also trying to start a family. Reproductive Endocrinology told me that because of my myomectomy that reconstructed my uterus when I was 18 years old, along with PCOS and endometriosis, I was deemed infertile. So we chose to do what any other couple that are told such news, and we proceeded with "mild" infertility treatments through medicines and IUI. The process was not easy and my body was not quick to take to it, but eventually, we got pregnant. Sadly, our 7 week ultrasound showed I had miscarried.
During all of this time, my stomachaches were daily. The IC was debilitating somedays and I was just feel downright defeated and depressed at times. I also had a surgical procedure to scrape my uterus of the scarring from years of endometriosis scarring. My Mom advised me to try eating gluten free and, sure enough, my stomachaches decreased dramatically when I eliminated the gluten. And, then, like magic, I became pregnant within weeks of eating gluten free. I had the very typical morning sickness symptoms, but when the morning sickness months were supposed to be gone, they were replaced with gnarling, gnawing, burning, deep aching pains in my stomach. Why was this happening again? It was difficult to eat most anything and, truthfully, I dreaded eating. I was eating gluten free so why was I getting stomachaches again? I just didn't understand. But I was pregnant and I HAD to eat for the baby so I suffered through the stomachaches, but they were depressing, to say the least.
The pregnancy was not easy on my body. I was experiencing Braxton Hicks contractions far more frequently and consistently than I should have in the early 20 weeks of pregnancy. I was even put on bed rest, but even with bed rest, my body had enough and my water broke at 35 weeks and my daughter was transported to the NICU and would be there for 49 days due to her lungs collapsing.
After her birth, my body continued to struggle. I started noticing weird red rashes on my cheek. It almost looked like I had been slapped, but it was almost always on the side of my face that I slept on so I started thinking that it was just from sleeping on it. I had no idea what it was so I was chalking it up to whatever my sleep-deprived, NICU baby, stressed-out-mind could conjure up at the time. I remember gluten free foods that were never symptomatic for me were becoming problematic to eat. It wasn't but 3 months into her birth that I was back to constant stomachaches all day and all night long. It was just like my gallbladder had never been taken out and I was right back to all that painful nonsense. I dreaded eating because of the inevitable pain that food would cause me to experience. I visited a GI Doctor who suggested a colonoscopy. I was 30 years old, I could hardly believe I needed a colonoscopy, but I took his advice. My colonoscopy revealed I had sessile serrated polyps; which are the precancerous type. My Doctor was concerned and questioned why I had these polyps at the young age of 30 years old and I was given instructions to have a colonoscopy every 2 years to monitor them.
But this didn't stop my stomachaches and neither did the Metamucil and extra fiber intake that the GI Doctor prescribed. I was becoming depressed over all of this and was feeling defeated. Over the course of the next year, I would continue to seek out Doctors to help "cure" me of my debilitating stomachaches. During this process, I began digging and researching online about it and I started finding information on corn and all the genetically modified chemicals in it. And because my gluten free diet had a lot of corn in it, I thought to myself, "Maybe this could be it?" So I started eating corn free. I completely changed my diet and lifestyle to the point that when the corn was no longer being ingested, my body couldn't even handle it topically in shampoos, conditioners, makeup, pump soaps, Kleenex tisues, or anything that touched my skin or else it would cause ulcerations of my skin or mucous membranes. Along with eating gluten free/corn free, I began drinking Keifer and eating cultured saurkraut for their healing probiotics. It was not a quick process, but I noticed and felt *some* improvement with my stomach pains so I felt encouraged.
The small amounts of healing that were taking place in my body allowed for my body to become pregnant with the use of progesterone cream, but without the use of infertility treatments. Once again, pregnancy reignited the stomachaches, face rashes, and weird side effects that my body experienced with my first pregnancy. I was also anemic. The only difference was this time around I had another child to take care of so I wasn't able to lay around as much as I did with the first pregnancy; which sent me into pre-term labor again, this time at 32 weeks. I was hospitalized and given magnesium sulfate to calm the pre-term labor. It caused me to feel extremely sick and faint for days, but it got me through the subsequent weeks and baby was born by C-section at 36 weeks. The C-section and pain medicines created miserable side effects. I was throwing up, passing out, and weak as a kitten. My healing from the C-section was exceptionally slow, compared to the first birth, and I struggled to bend over to touch my ankles even up to 9 months after the surgery. My legs started feeling like they were buckling and a weird numbness would trickle up them, as they felt like they were turning to pillars of stone. While this was happening, I would start to go black in my vision and see stars. If I didn't grab onto something or just stop, I was going to fall over.
Likewise, I told the Doctor "I feel like death warmed over" with struggling to keep momentum for simplest of things and figured it was exhaustion from caring for an infant and a 3 year old, but blood tests revealed extreme deficiency in B-12 and Vitamin D levels. The Doctor couldn't believe I was even getting up and functioning. I began an intensive vitamin supplementing regimen, including magnesium, and started to say things like, "I feel human again!" so, once again, I was feeling encouraged by these small improvements because when you become used to feel so terrible, when you feel the slightest bit *better*, you are so entirely grateful.
Our second baby had just celebrated her first birthday and though we weren't trying to have another baby, my body naturally got pregnant again. While the pregnancy was a little bit "easier" than the previous two pregnancies, no doubt to the fact that my vitamins and minerals were more leveled, I still struggled with eating food without pain. Thankfully, though, my pre-term labor was much more "tolerable" (no doubt to the magnesium supplementation and consistent exercise). I was able to carry until 37 weeks AND I fought for a VBA2C (vaginal birth after 2 c sections) + Myomectomy and I delivered our third child, completely unmedicated. I knew how adversely I reacted to the last C-section meds and the lengthy healing on my body, and I didn't want to experience that turmoil ever again so I was determined to have a medication free birth. It was such a redeeming birth experience to walk out of the hospital without having to recover from cesarian surgery.
The postpartum experience, though, was my most challenging of all. I was grappling with finding foods that cause me intense pains or cause my baby to be vomiting or unsettled from my breast milk. I felt like I was starving giving him all of my nutrients. It was causing me postpartum depression (never diagnosed because I hid it well) and anxiety along with all of the other physical symptoms. Once I stopped nursing, I felt a bit of a revive in my body again, but it was short-lived.
Within a year, I started developing daily, chronic post nasal drip and the most intensely hot, itchy, red rashes on my cheeks. They came out of nowhere and they were bright red. My almost 3 year old would say things like, "Mommy, your cheeks are red! Mommy, why are your cheeks so red?" So I went to an Immunologist and he ordered a full nutritional panel. My vitamin D and B-12 levels were plummeting again and I would find out that I needed to supplement more. Something about pregnancy totally depletes my body of its nutrition. But, surely, there was more to these intense rashes and stomachaches than low vitamin levels? I just sensed it in my soul there was "more" to the story. I inquired of the Immunologist if my mast cells could be overreacting. He almost laughed at me while stating, "This is NOT a mast cell issue." But I asked that he test my tryptase levels and he told me they would be normal, and sure enough, they were so he wouldn't even consider digging "deeper" into that diagnosis and he dismissed it. I became defeated, discouraged, and swore I was done with Doctors.
My symptoms continued. Not only did they continue, but they progressed. I started noticing a very rapid heart rate upon standing. Sometimes the rapid heart rate was accompanied by feelings of passing out and going black, and other times it was just a very rapid heart rate. I told my husband about thinking that my mast cells were not responding correctly and he did his online searching magic and ordered me a book to read about Mast Cells. I got that book and was engrossed in it. I highlighted it. I underlined it. IT.WAS.ME! I had never read anything from a Doctor explaining me in such simple terms. I didn't know where to go from here or who to see, that would believe in such testing, so my neighbor suggested seeing a Functional Medicine Doctor so I made the appointment with such hopefulness.
Unfortunately, the Functional Doctor left me totally unimpressed. The Functional Doctor focused on more supplementation. Besides discovering "critically low Omega 3 levels" (his words) and inflammation and signs of candida in my gut, not much else showed up in my blood or stool testing. One of the supplements he ordered for me was a Pepsin HCL pill. The first few times I took it, I swore my stomach just burned, gnawed, and felt worse. But, what do we humans do when Doctors suggest something? We continue to do it. So I did just that at my own disadvantage. That supplement wrecked havoc on my stomach for months, even after discontinuing it. It made my face rash even more red, itchy, and hot. It sent my post nasal drip into chaos and reignited severe acid reflux. I just felt so much worse from taking it; like it burned a hole in my stomach. During this time, I emailed the author of the Mast Cell book that my husband had purchased for me, and, to my ultimate surprise, he wrote me back! He told me that the nearest Doctor who knew anything about the disorder practiced in Michigan. I think I called that doctor that very day. I was shocked to call and find out that it would be a 6 month wait because he only took one Mast Cell patient per month, but I excitedly took the appointment and begged to be put on his cancel list.
During my 6 months of waiting, I wore a heart monitor and the Cardiologist discovered that I had Supraventricular Tachycardia (SVT). As weird as it sounded, it was such a relief to get a diagnosis for the intense rapid heart rate moments that were so often happening to me. My post nasal drip was becoming so severe that I could hardly swallow somedays and it was feeling as though food was being stuck in my esophagus. I remember one day specifically that Micah and I were driving around town doing errands and I was producing so much phlegm from an allergic reaction to a food I had just eaten before leaving the house that I couldn't swallow and I couldn't hardly breathe. I was choking and I was panicking. I started hitting my throat to "wake it up". It took about a minute, but I was able to swallow and take a deep breath. This episodes would continue until I had an upper endoscopy and it revealed a very narrow esophagus, esophagitis, GERD, and acid and bile reflux. The GI had to dilate my throat to open it up.
In addition to the SVT, the passing out moments were becoming daily and more intense. Sometimes I would simply reach too fast or up too high for a plate or cup up in the cupboard and I'd start feeling the sensations of passing out come over my body. I'd have to immediately stop what I was doing, hold onto the countertop or bend over a bit (to stop the blood rush) to keep myself from fully passing out.
By the time I arrived to the Michigan Immunologist, I felt like a mess. But he was kind, observant, and open-minded.
**to be continued** (tiredness is a very real thing and it's difficult to write for long bouts of time)
Our second baby had just celebrated her first birthday and though we weren't trying to have another baby, my body naturally got pregnant again. While the pregnancy was a little bit "easier" than the previous two pregnancies, no doubt to the fact that my vitamins and minerals were more leveled, I still struggled with eating food without pain. Thankfully, though, my pre-term labor was much more "tolerable" (no doubt to the magnesium supplementation and consistent exercise). I was able to carry until 37 weeks AND I fought for a VBA2C (vaginal birth after 2 c sections) + Myomectomy and I delivered our third child, completely unmedicated. I knew how adversely I reacted to the last C-section meds and the lengthy healing on my body, and I didn't want to experience that turmoil ever again so I was determined to have a medication free birth. It was such a redeeming birth experience to walk out of the hospital without having to recover from cesarian surgery.
The postpartum experience, though, was my most challenging of all. I was grappling with finding foods that cause me intense pains or cause my baby to be vomiting or unsettled from my breast milk. I felt like I was starving giving him all of my nutrients. It was causing me postpartum depression (never diagnosed because I hid it well) and anxiety along with all of the other physical symptoms. Once I stopped nursing, I felt a bit of a revive in my body again, but it was short-lived.
Within a year, I started developing daily, chronic post nasal drip and the most intensely hot, itchy, red rashes on my cheeks. They came out of nowhere and they were bright red. My almost 3 year old would say things like, "Mommy, your cheeks are red! Mommy, why are your cheeks so red?" So I went to an Immunologist and he ordered a full nutritional panel. My vitamin D and B-12 levels were plummeting again and I would find out that I needed to supplement more. Something about pregnancy totally depletes my body of its nutrition. But, surely, there was more to these intense rashes and stomachaches than low vitamin levels? I just sensed it in my soul there was "more" to the story. I inquired of the Immunologist if my mast cells could be overreacting. He almost laughed at me while stating, "This is NOT a mast cell issue." But I asked that he test my tryptase levels and he told me they would be normal, and sure enough, they were so he wouldn't even consider digging "deeper" into that diagnosis and he dismissed it. I became defeated, discouraged, and swore I was done with Doctors.
My symptoms continued. Not only did they continue, but they progressed. I started noticing a very rapid heart rate upon standing. Sometimes the rapid heart rate was accompanied by feelings of passing out and going black, and other times it was just a very rapid heart rate. I told my husband about thinking that my mast cells were not responding correctly and he did his online searching magic and ordered me a book to read about Mast Cells. I got that book and was engrossed in it. I highlighted it. I underlined it. IT.WAS.ME! I had never read anything from a Doctor explaining me in such simple terms. I didn't know where to go from here or who to see, that would believe in such testing, so my neighbor suggested seeing a Functional Medicine Doctor so I made the appointment with such hopefulness.
Unfortunately, the Functional Doctor left me totally unimpressed. The Functional Doctor focused on more supplementation. Besides discovering "critically low Omega 3 levels" (his words) and inflammation and signs of candida in my gut, not much else showed up in my blood or stool testing. One of the supplements he ordered for me was a Pepsin HCL pill. The first few times I took it, I swore my stomach just burned, gnawed, and felt worse. But, what do we humans do when Doctors suggest something? We continue to do it. So I did just that at my own disadvantage. That supplement wrecked havoc on my stomach for months, even after discontinuing it. It made my face rash even more red, itchy, and hot. It sent my post nasal drip into chaos and reignited severe acid reflux. I just felt so much worse from taking it; like it burned a hole in my stomach. During this time, I emailed the author of the Mast Cell book that my husband had purchased for me, and, to my ultimate surprise, he wrote me back! He told me that the nearest Doctor who knew anything about the disorder practiced in Michigan. I think I called that doctor that very day. I was shocked to call and find out that it would be a 6 month wait because he only took one Mast Cell patient per month, but I excitedly took the appointment and begged to be put on his cancel list.
During my 6 months of waiting, I wore a heart monitor and the Cardiologist discovered that I had Supraventricular Tachycardia (SVT). As weird as it sounded, it was such a relief to get a diagnosis for the intense rapid heart rate moments that were so often happening to me. My post nasal drip was becoming so severe that I could hardly swallow somedays and it was feeling as though food was being stuck in my esophagus. I remember one day specifically that Micah and I were driving around town doing errands and I was producing so much phlegm from an allergic reaction to a food I had just eaten before leaving the house that I couldn't swallow and I couldn't hardly breathe. I was choking and I was panicking. I started hitting my throat to "wake it up". It took about a minute, but I was able to swallow and take a deep breath. This episodes would continue until I had an upper endoscopy and it revealed a very narrow esophagus, esophagitis, GERD, and acid and bile reflux. The GI had to dilate my throat to open it up.
In addition to the SVT, the passing out moments were becoming daily and more intense. Sometimes I would simply reach too fast or up too high for a plate or cup up in the cupboard and I'd start feeling the sensations of passing out come over my body. I'd have to immediately stop what I was doing, hold onto the countertop or bend over a bit (to stop the blood rush) to keep myself from fully passing out.
By the time I arrived to the Michigan Immunologist, I felt like a mess. But he was kind, observant, and open-minded.
**to be continued** (tiredness is a very real thing and it's difficult to write for long bouts of time)
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