#mastcelldisorder

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But they are still not where they want to be. I work with these clients for months- starting off weekly- and we make progress. We have a 90% success rate. We address the imbalances that are left and repair every system and cell in their bodies- and we do what nobody else has. We treat them like the mystery and individual they are. We take our time and we do it right. People like you take their bodies and their lives back from CIRS. Some choose to fix their environment. Some choose not to. They all make progress. They all make informed decisions. But they all work hard to do it. Are you ready to take your body and your life back from the damage that CIRS has done ? Are you ready to work hard and stand in your power over this disease? Apply for acceptance in our CEP program. Link in bio #chronicfatiguesyndrome #mastcelldisorder #mad #multipleautoimmune #mycrazyjourney #takeyourbodyback #autoimmune #neurologicalhealthcoach #neurologicaldisorders pic from @wildwomaninspired
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I started breaking out in hives on the way to an event I had been looking forward to last night. I’ve been fighting a migraine the last few days and my ears have been hurting amongst other symptoms. I knew I was getting too tired. In the past I would get mad and hate my body for failing me. For not being able to keep up. I would go into this spiral of self loathing. Instead of all of that I am going to love my body and give it rest. #mastcellproblems
We finally got out last night to celebrate our 16th wedding anniversary. Always great to find a restaurant that has a great choice of alcohol free cocktails (this one is elderflower and rhubarb) and a histamine friendly menu. Eating out now requires a thorough investigation before booking a table! We had a fantastic evening 🤗. #edsproblems #mastcelldisorder . . . . . . #hypermobility #eds #ehlersdanlos #ehlersdanlossyndrome #histaminefree #chronicpain #movementtherapy #weddinganniversary #datenight #pilatesforhypermobility #zebrastrong #fragilebutunbreakable
This the norm around here; a pasta/grain, beans and mixed veggies with olive oil and herbs. Low histamine, plant based and allergy/trigger free here. #lowhistaminediet #lowhistamine #mcas #mastcellactivation #beans #vegetarian #plantbased #veggies #mastcelldisorder
Busy day today! Woke up to some lab work that had come back. My #PTH levels were elevated for the third time this year 🤔 I see my endocrinologist next week to discuss next steps, but based on my last appointment with her, it seems likely that we will do further testing for #hyperparathyroidism I also had to go to the dentist today! I was SO SO nervous about having a #mastcellreaction to any of the materials they used or even worse, go into #anaphylaxis . My dentist was AMAZING! Pulled #MCAS case studies from the dental world and read up on the condition. Everything went smoothly, no issues. He was so great! [And hubby was jealous 😉😉] Made a delicious #whole30approved dinner and now relaxing before getting back to work. Is it just me or do I have more energy this week? Is it possible that the #mestinon is working this quickly? Only time will tell. #careerwithchronicillness #chronicillness #chronicallyill #POTS #dysautonomia #posturalorthostatictachycardiasyndrome #mastcellactivationsyndrome #mastcelldisorder #MCAS #epipen #sjogrenssyndrome #gp #delayedgastricemptying #chargies #spoons #spoonie #youngpeoplechronicillnesses #antiinflammatory #whole30 #whole30approved #whole30alum
Low histamine cooking. Instead of tomato sauce, I make red pepper sauce. I added kale, garlic, salt, cooked red peppers and coconut milk to blender to make the sauce. I then made some yeast free pretzels bites. One batch was with salt and the other had light brown sugar. #lowhistaminediet #lowhistamine #mcas #mastcellactivation #mastcelldisorder #yeastfree #tomatofree #vegetarian
I hope you get to come with me to this wonderful faraway land. Tofu shop. So much tofu. Fresh. Delicious. I was so worried about my various food “issues” in Japan. I really can’t overdo high histamine foods like ferments (I know, like crazy that I’m the #Fermentationist ) But I make it work. And the food in Japan was so nice to me that I had zero problems. One of my friends who taught me much about histamine passed away last week. Rest in peace @healing.histamine you were a bright light that helped so many people and we miss you already. I will do my best to keep educating people about this important topic b/c so many of us suffer from these issues and increasingly more are dealing with the immune dysfunction, mast cell disorder, likely caused by taking antibiotics too many times. We know it is connected to dysbiosis and dysbiosis is caused by antibiotics primarily. If you want to learn more, I have a training at summerbock.com/allergy ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ . . . . . #summerretreat #summerbock #wanderlust #travelphotography #histamineintolerance #whatsummereats #healinghistamine #histamineintolerance #allergyantidote #mastcelldisorder
#masties #spoonies Do you guys have hair loss? This is just from washing my hair in the shower. Yesterday and today. Is this normal? It gives me anxiety because my family has a history of thyroid issues. My thyroid always tests okay and my doctors blame it on my #mcas . Normal or no? #mastcelldisorder #mastcellactivationsyndrome #hairloss
I was wondering if any of you had trouble with skincare or make-up? My skin, especially cheeks and chin, is super sensitive. I think this is primarily from having MCAS, but Fibro could also be playing a role. It is so sore and stings. Suncream is especially problematic and it doesn’t like most moisturisers either. Any brands that you find better or your skin can tolerate? Would appreciate any advice! I’m in the UK and can’t get hold of a lot of US- based brands, which is annoying. . #skincare #soreskin #fibromyalgia #skinissues #mastcelldisorder #mastcellactivationsyndrome #fibromyalgiaawareness #fibromyalgiawarrior
Showing off his pretty eyes on our dinner date at @gratemac
I don't know where my caption went, so trying to retype it 😅😅 First one in, last one out of the office today. 👊🏻👊🏻 trying to make up some of the time I missed when I was out due to illness. Thankful that my body allowed me to work today. Lots of medical changes this week (discussed in my story yesterday). We are stopping #propranolol and starting #mestinon for #POTS . We also are starting #montelukast #cromolyn and a nebulizer to help stabilize my #mastcells . Hoping that this change in treatment helps relieve some of my symptoms. Also got a STAT referral to #pulmonology for my respiratory issues. And my primary care physician is sending me to Brigham for additional dysautonomia testing (something in addition to POTS?) and for mast cell treatment. Hoping these changes lead to fewer symptoms! #careerwithchronicillness #lifewithchronicillness #dysautonomia #posturalorthostatictachycardiasyndrome #MCAS #mastcellactivationsyndrome #mastcellactivationdisorder #mastcelldisorder #mastcells #gp #delayedgastricemptying #sjogrens #sjogrenssyndrome #autoimmunedisease #spoons #spoonie #chargies #chronicallyill #chronicillness
Another day ahead with master herbalist Julie McIntyre who is working tirelessly with Stephen H. Buhner. Many pearls of wisdom that will take my knowledge to the next level - and refine application when addressing symptoms associated with #Lymedisease #Bartonella #Babesiia #Mycoplasma #mastcelldisorder
I’ve put my body through a lot these past three months in the name of healing, and up until 9 days ago, I was still suffering. This update is long overdue and for that I apologize! ▫️◽️▫️◽️▫️◽️▫️◽️▫️◽️ After a tough August dealing with intense symptom regression resulting from starting a new mast cell stabilizer med, I’m happy to share that I’m actually starting to have more good days than I previously had! I also completed the GI portion of the mold detox and still have two weeks left of the Sporonox nasal spray. I also continued to work with my energy healer (highly recommend for anyone ready to finally heal). ▫️◽️▫️◽️▫️◽️▫️◽️▫️◽️ Even though I’ve been in bed or laying around most days, I sure accomplished a lot this summer: ◽️▫️◽️▫️◽️ From not knowing what was wrong with me to receiving a diagnosis that I can finally treat properly. ◽️▫️◽️▫️◽️ From being anti-prescription medications to willingly taking them because they actually make me feel better. ◽️▫️◽️▫️◽️ From vomiting up to 5 times per week to only once every two weeks. ◽️▫️◽️▫️◽️ From level 9 stomach pain from eating or drinking water to a level 3. My stomach is less sour, bloated, and nauseous. ◽️▫️◽️▫️◽️ From an intense burning fire feeling when I digested my food to just an uncomfortable sensation. ◽️▫️◽️▫️◽️ From debilitating brain fog to glimpses of my old Ferrari brain, to finally realizing that my brain is back! ◽️▫️◽️▫️◽️ From daily POTS symptoms to no tracycardia. I’m still working on all the other dysautonomia symptoms. ◽️▫️◽️▫️◽️ From feeling stuck to feeling empowered. ◽️▫️◽️▫️◽️ From my body is broken to my body is perfect, it just needs to heal. ◽️▫️◽️▫️◽️ From feeling like I needed to file for disability to feeling like I can go back to work with accommodations. ▫️◽️▫️◽️▫️◽️▫️◽️▫️◽️ I could go on and on, but you all get the idea - there is progress being made even when I am suffering. ▫️◽️▫️◽️▫️◽️▫️◽️▫️◽️ I’m certainly not out of the woods yet, but I swear I haven’t felt this much symptom relief in years. I’m honestly encouraged! In the words of Scheana Shay, “it’s all happening!” #realspoonieswatchbravo #pumprules
The best boy goes to the bluegrass festival
Frequent nebulizer treatments to help decrease the inflammation in my lungs. Waking up feeling like I am suffocating and gasping for air is no fun. Also dealing with #mastcell reactions. Full face flushing every day, severe stomach pain that responds to high doses of benadryl. Fortunately seeing my allergist on Monday. He has been wanting me to try #cromolyn so we will see. Brain fog and exhaustion from the wheezing, chest pain, etc. But feeling better today than I did earlier in the week. Beginning to taper the #prednisone so hoping the insomnia goes away soon. Missing work stinks, especially because I love my job and my career. Itching to get back into the office, but pacing myself so I don't flare up when I return. #careerwithchronicillness #chronicillness #chronicallyill #lunginflammation #chronicinflammation #systemicinflammation #methotrexate #MTX #posturalorthostatictachycardiasyndrome #dysautonomia #POTS #sjogrens #sjogrenssyndrome #mastcellactivationsyndrome #mastcelldisorder #MCAS #epipen #anaphylacticshock #gp #delayedgastricemptying
Discouraged and frustrated to say the least. What I wanted to do with nutrition is not working out for this gastroparesis body. I am miserable and sick from eating whole foods, fiber, plant based, etc. How can I live like this? Despite my best efforts, faith, and lots of prayer, my body just won't cooperate. My gastroparesis won't go away. My stomach just won't work! 😟 Now, I know there is no cure for GP, but I was hoping I would be an exception! I must go back to a GP friendly diet, which for me is mostly liquid. Even that just sits in my tummy forever. Not even my medical cannabis is helping. I'm reminded why I needed a feeding tube to begin with. 😟 Without it now, it's hard to get what I need. I am thankful that God is sustaining me through all of this. I will still try to eat as healthy as I can with making my own GP friendly foods. I can't explain how devastating it feels to have these health issues and no matter what you do, it won't get better. I remain steadfast knowing God is in control and take solace in that. He is after all, the sustainer of life. ✝️ And hey, I don't live on bread alone. 😉 #bebrave #bestrong #remainsteadfast #chronicovercomer #livelifetothefullest #keepmovingforward #chronicillness #invisibleillness #gastroparesis #starvingforacure #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #chronicwarrior #spoonie #spoonielife #zebrastrong #psoriaticarthritis #youdontlooksick #mcad #mastcellactivationsyndrome #mastcelldisorder #notgoingdownwithoutafight
He’s only tolerating shopping. He always gets excited when he sees the door to leave 😂
Pregnancy has really be teaching me a lot about rolling with the tides when it comes to food and food needs. This histamine intolerance/mast cell disorder business is really kicking my booty to say the least. To all my clients who struggle with various issues around food: I GET IT!!! I am right there with you. Often times people think that because of what I do I must have no health issues and eat perfectly clean 100% of the time. And that's just not human. Here's the thing: I do what I do BECAUSE of the health struggles in have had in my life. I dealt with a raging, horrible eating disorder for 13+ years that literally almost killed me. I was addicted to phen phen and other popular diet drugs that stimulate the Central Nervous System for years. And the eating disorder + the drugs destroyed my gut and severely damaged my thyroid. I have done A LOT of work to rebuild my body in the 5 + years (6 years in October) that I have been free of that monstrous eating disorder. This histamine issue comes and goes depending on a combination of my stress level and what I eat. When its raging it causes symptoms like: insane itching (the kind that makes you want to rip your skin off), the thyroid issues come back, depression, fatigue, insomnia, racing heart and mind. Not fun. There have been times where I have had it under control for over a year and I felt AMAZING. Pregnancy can definitely throw your body for a loop and cause things to get all sorts of weird and crazy. And it has done that for me with this histamine issue. It has reared its ugly head bigtime. And I'm really trying to control it with food and various pregnancy safe supplements that definitely help. But sometimes you just want to be NORMAL and eat the treat or meal you've been craving and not think about it. And that's where I was last night. I crave taco meat like crazy these days and last night I ate my taco meat with Beanitos bean chips. And it was absolutely delicious... but not worth it at all due to the reaction I was up with all night. Just a reminder that I'm not there yet. But I will get back to that place where the "healthy" chips don't make my body freak out. Head up.Keep going
Pregnancy has really been teaching me a lot about rolling with the tides when it comes to food and food needs. This histamine intolerance/mast cell disorder business is really kicking my booty to say the least. To all my clients who struggle with various issues around food: I GET IT!!! I am right there with you. Often times people think that because of what I do I must have no health issues and eat perfectly clean 100% of the time. And that's just not human. Here's the thing: I do what I do BECAUSE of the health struggles in have had in my life. I dealt with a raging, horrible eating disorder for 13+ years that literally almost killed me. I was addicted to phen phen and other popular diet drugs that stimulate the Central Nervous System for years. And the eating disorder + the drugs destroyed my gut and severely damaged my thyroid. I have done A LOT of work to rebuild my body in the 5 + years (6 years in October) that I have been free of that monstrous eating disorder. This histamine issue comes and goes depending on a combination of my stress level and what I eat. When its raging it causes symptoms like: insane itching (the kind that makes you want to rip your skin off), the thyroid issues come back, depression, fatigue, insomnia, racing heart and mind. Not fun. There have been times where I have had it under control for over a year and I felt AMAZING. Pregnancy can definitely throw your body for a loop and cause things to get all sorts of weird and crazy. And it has done that for me with this histamine issue. It has reared its ugly head bigtime. And I'm really trying to control it with food and various pregnancy safe supplements that definitely help. But sometimes you just want to be NORMAL and eat the treat or meal you've been craving and not think about it. And that's where I was last night. I crave taco meat like crazy these days and last night I ate my taco meat with Beanitos bean chips. And it was absolutely delicious... but not worth it at all due to the reaction I was up with all night. Just a reminder that I'm not there yet. But I will get back to that place where the "healthy" chips don't make my body freak out. Head up.keep going
Under the Sea at the Little Mermaid 🐠🐬🐳
Playing with the pretty lion at our xolair appointment 💉
My heart! (You know I’m pretending that I’m a Gallifreyan with two hearts, right?) It beats strong and is full of love! The echo is part of #ehlersdanlossyndrome #EDS testing. #hypermobility #hypermobiltysyndrome #jointhypermobilitysyndrome
This counts as cyborg, right?!
⚠️ DIET COKE ⚠️ So it turns out I’ve become pretty addicted to Diet Coke over the last year, needing one everyday and my excuse was where I have been ill I can’t have any thing else I want so this was my treat but the reality is it was making me more sick! I had a glass last night and it tasted like chemicals and I decided there and then no more,now I’m not saying I won’t ever drink it or any other drink containing #aspartame again but I am determined to go at least a month without it to start! Also I am allergic to #sulphites and the #sugarfree squash I’ve been having is also basically poison for me so I’ve found 3 alternatives- @belvoirfruitfarms cordial and rocks organic cordial going to try these with sparkling water for a fizzy alternative! #dietcokeaddiction #chemicals #dietcokeaddict #poison
Dear Ignorant Woman in Aldi -- When you approached and verbally attacked me in the store, you hurt my feelings. You attacked me for "recklessly" being out in public, possibly infecting your young grandchild/child sitting in the front of the cart. You said I had no business being sick in public because your of those too young to be immunized. Here's what you didn't know. I am sick, but not contagious. I wear this mask to protect MYSELF from the illnesses of others on the advice of several medical specialists. This is the face of someone who in the last year has gone into anaphylactic shock for NO REASON and almost died. This is the face of someone who is immunosuppressed from taking chemotherapy pills. This is the face of chronic illness. This is the face every single person with any one of the dozens of other reasons to wear masks or use other medical devices to have some semblance of a normal life. I was proud of myself for feeling well enough to grocery shop on my own. You with your ignorant comments took away that joy. So before judging someone, please take a moment to think and consider your words. You never know what someone is going through beneath the surface. [Repost of old photos of me wearing my mask] #spoons #spoonie #methotrexate #immunosuppressed #autoimmunedisease #autoimmunecondition #sjogrenssyndrome #POTS #dysautonomia #posturalorthostatictachycardiasyndrome #unchargeables #MCAS #mastcellactivationsyndrome #mastcelldisorder #mastcells #gp #delayedgastricemptying #chronicallyill #chronicillness #chronicinflammation #youngpeoplechronicillnesses #careerwithchronicillness
Who else....has all three? #ehlersdanlos #pots #mastcelldisorder
Feeling better and super grateful me Da could come with me to the hospital. ❤️❤️❤️ Lucky. #bestdadever #daddysgirl
All done with bone marrow biopsy. Took them 1 1/2 hours. Was supposed to be 15-20 min. She had a hard time getting a piece of bone at the end of the procedure and had to do a lot of tapping. But, it didn't hurt. I am pretty sore now obviously and they said since it was so difficult, I will be even more sore tomorrow. Don't they know I am always in pain every day? 😉 Results in a week or so. I appreciate everyone who prayed! The nurse in me actually really enjoyed the procedure. #bonemarrowbiopsy #bebrave #bestrong #remainsteadfast #chronicovercomer #livelifetothefullest #keepmovingforward #chronicillness #invisibleillness #gastroparesis #starvingforacure #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #chronicwarrior #spoonie #spoonielife #zebrastrong #psoriaticarthritis #youdontlooksick #mcad #mastcellactivationsyndrome #mastcelldisorder #notgoingdownwithoutafight
#physicaltherapy for injury caused by #jointhypermobilitysyndrome #hypermobilitysyndrome #hypermobilty Testing for #EDS #ehlersdanlossyndrome oddly bendy ≠ good, even if it sounds fun
Went to the doctor. Got nothing. I mean they had nothing. So flipping pissed. So I messaged my sister and examined her rare disorder & my rare disorders and totally think I figured it out. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ Be your advocate. I found out I have a tumor on my liver yesterday. The scan was from 2015. How has this not come up in three years? I’m now keeping notes and paying attention because rare disorders aren’t diagnosed in a ten minute session. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ I know it’s frustrating but after phone calls to old doctors, reading old medical records, messaging my sister and a lot of research I feel a lot better mentally. I even found out why I went blind for three days ten years ago. Found out why they keep testing me for Multiple Sclerosis. It’s not MS but it often acts like it. Found a medication that might keep my sister from radical surgery. No longer a medical mystery. Just a lot reading. Found specialists in Madison & possibly Atlanta in a research hospital. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ Ladies, if you have a sister, she is the closest thing to you on this planet. By that I mean, if she has a disorder, you need to know about it. Nothing matches your makeup like your blood sibling of the same gender. I found so much by cross-referencing Kristen’s diseases. Don’t give up. Keep fighting. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀ #raredisorders #MTFR #FactorV #factorvleiden #mastcelldisorder #mastcell #mastcellactivation #angioedema #hereditaryangioedema #castlemans #unicentriccastle #blooddisorder #supplementsfordays #msm #5htp #vitaminc #FitQuote #FitnessMotivation #Fitspo #GetFit #GoalSetting #YouCanDoIt #JustDoIt #Iwill #BestLifeProject #Alwaysinbeta #Betterforit #Findyourstrong
I got to be on the other end of research... the participant!
In the hospital, sometimes having a mast cell disorder, ehlers danlos, POTS and von willebrands.....isn't fun! #mastcelldisorder #ehlersdanlos #potssyndrome #vonvillebrands
Trying a new #MCAS friendly, #lowhistamine smoothie from healthynibblesandbits.com and it's a winner!
Oh mast cell activation syndrome, I really, really hate you. Currently in a GI and respiratory flare induced by upset emotions last night. I’ve been in and out of the bathroom for the past 4 hours and it’s not letting up yet. The tears started at hour 3 because I’m alone and a part of me always panics when I’m by myself and my symptoms get out of hand. I’m always scared I’ll start anaphylaxis. My mom and dad are coming to pick me and the dogs up to take care of me. Please pray I don’t have to go to the ER today or this weekend. I rarely have great experiences with hospitals and am having anxiety over the possibility of going. I am supposed to be titrating up on my mast cell stabilizers today, which causes flares, so I won’t be able to do that today. My body can’t handle it. #thisis30
I swear I have everything together. I just forgot where I put it. #brainfog #mylife #mastcelldisorder #forgetful
Just because he’s pretty
“Mast cells are the repository for histamine in the body. They influence the pathophysiology of allergic diseases, such as rhinitis, urticaria, and asthma; regulate bone formation and integrity; help repair and maintain connective tissue; promote wound healing; and probably contribute to the development and preservation of the endothelium and small blood vessels. Although they are found in all human tissue, mast cells are most prevalent at the interface between the host and its environment, that is, in the skin and in the mucosa of the upper and lower respiratory tracts and the gastrointestinal tract. Recent evidence suggests that two types of mast cells exist: (1) the connective tissue type, found primarily but not exclusively in loose connective tissue and skin, and (2) the mucosal type, found primarily in gastrointestinal mucosa and peripheral airways. The factors that produce this differentiation are not fully known. Although both mast cell types have IgE receptors that can be activated by allergens, differences between the two types exist in their responses to nonallergic signals, the mediators they release, their proteoglycan constituents, and the makeup of their granular enzymes. The importance of these biochemical differences to cellularfunctioning remains to be investigated.” - Stephen I. Wasserman, M.D.
As a teen, I was really into The Pixies, but little did I know that as an adult the song “Where is My Mind?” would become one of my anthems. >>>>> >>>>> >>>>> Guys, I haven’t been great. After my last post, I started to enter a fatigue episode triggered by the stress of moving, overdoing it physically, starting the mold detox protocol, and dealing with mast cell reactions to my lady time hormones. What does this mean? Level 8 pain, nausea, vomiting, diarrhea, gastritis, migraine, deep bone pain, brain fog, endometriosis, sinus pain/congestion, and angioedema. >>>>> >>>>> >>>>> The reason why I haven’t posted in two weeks is because my brain would not give up the words I needed to express myself. I was just too overwhelmed with how awful I felt physically that all I could do was cry, sleep, meditate, or be super short with my loved ones. I can’t even bring myself to be on or a part of social media when I feel this way. >>>>> >>>>> >>>>> Of all of the symptoms I deal with on a daily basis, cognitive decline and brain fog are the two I find myself the most embarrassed about. A huge part of my identity pre-illness was being smart and gifted intellectually, and as my brain has changed over the past four years, I’ve grieved the loss of being able to remember every word people say, never needing to write anything down, and easily expressing myself. It’s much different now. Even when I write things down, I forget what I just wrote. I show up to appointments on the wrong day and time at least once per week (one time I was extra and did 3 in one day!). If I ever don’t make sense, this is why. >>>>> >>>>> >>>>> As much as I am working to stabilize and heal my physical body, I am doubly focused on improving my brain’s function. Even though I write for a living, it takes a lot of extra effort to rework my sentences so they are clear and make sense. When my brain is tired, nothing makes sense. I write and speak like a dyslexic Yoda. I’m working on forgiving my brain for not working how it used to and instead thank it for still functioning as well as it does. >>>>> >>>>> >>>>> Where is my mind?
Saying this to myself. Thank you all for praying. I have to have a bone marrow biopsy August 23rd. It will be done in the office under light sedation. Not looking forward to it, but hoping it gives us some answers to my chronic neutrophilia. #bebrave #bestrong #remainsteadfast #chronicovercomer #livelifetothefullest #keepmovingforward #chronicillness #invisibleillness #gastroparesis #starvingforacure #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #chronicwarrior #spoonie #spoonielife #zebrastrong #psoriaticarthritis #youdontlooksick #mcad #mastcellactivationsyndrome #mastcelldisorder #notgoingdownwithoutafight #bonemarrowbiopsy
True for Blaine or nah
Thank you for joining me on this journey to recover, reshape, reform after a life-threatening disease TRIED to take my body, finances, and life from me. Disease does not define us. Stay tuned for updates on the blog. #recoverreshapereform #lifethreatening #honeybadgertraining #mastocytosis #mastcelldisease #mastcelldisorder #mastcellactivationsyndrome #stacycoggins
Happy gastroparesis & digestive tract paralysis awareness month! These relentless disorders are the main reasons for my feeding tubes and central line. While they have affected my life quite a bit, they have also allowed me to meet some incredible people. Hoping to bring awareness to all of the warriors that are starving for a cure every day! 💕
My whole trunk of my body looks like this. Dear mast cell we have been fine for 2 years. Why now? Nothing is helping the itchy even the super strong prescribed stuff. #mastcelldisorder #whoknowswhy #chronicallystrong
Yes, his dog tag does say “Beer Boy” and doubles as a bottle opener
Hide & seek: service dog edition
Always making me smile
I’m going to repost on topics I posted about a long time ago with my new perspective! First for all my new and newish followers, here’s a symptom list of everything I was experiencing for up to a year before I got officially diagnosed with MCAD. I know I’m lucky even getting a diagnosis that soon into my process. I happened to have an allergist familiar with the symptoms. At that time this list was my life. I was so miserable. It didn’t all hit at once: it slowly built up throughout my life. I’d always had food allergies, anxiety, and random fevers/infections. Then I remember in my early 20s starting to struggle with constipation, painful menstruation, acid reflux and would wake up in the night with intense hot flashes. Next I started getting a tight and mucus filled throat after eating. Random hives started forming on my face, and I would wake up with red and swollen cheeks almost every morning. I started getting tachycardia and feeling like I couldn’t breathe. Then full on panic attacks for the first time in my life. And it continued to escalate from there. Because the symptoms added on one at a time I was able to convince myself that it was nothing- I was just being crazy and a hypochondriac. Poor health is so normalized in our culture anyway that I kept telling myself that everyone has little issues- it was nothing to worry about. But it was not normal! All of these symptoms were my body telling my that something was very wrong. That my immune system was struggling with too many chronic infections. That my microbiome was severely compromised. And my mast cells were over activating in response. After a year and a half of extremely diligent work using naturopathic and nutritional medicine, my symptom list is now much, much smaller! I still deal with some skin issues (hives, blotchy cheeks), fatigue, and other symptoms sometimes- but I feel so much better day to day! Most of these symptoms now serve as warnings for when I’m pushing too hard and not focused enough on my recovery. Recovery is possible. Chronic illness is not a life sentence. #mastcelldisease #mastcellactivationdisorder
One of the things that keeps me going is to celebrate my wins, no matter how big or small they are. My husband and I went on a date last night to one of our favorite restaurants in Minneapolis to celebrate the progress I’ve made in the past two months health wise, our recent move from our house into a space I can heal in, and an exciting opportunity I’ve been asked to help with, which is to work with my doctors to develop affordable and easy to follow resources for others suffering from #mastcelldisorders and #ehlersdanlossyndrome , so that quality care isn’t dictated by how much money you have in your bank account. >>> >>> WOW! I feel so humbled and honored! And EXCITED! This is what I was born to do. My suffering has meaning and purpose. >>> >>> Despite vomiting earlier in the day, I was able to put a little bit of makeup on and go out for a few hours. For those of you who are close to me, you know how long it’s taken for me to get back to this place again. Just a few months ago I was barely able to walk, eat, or think, but I kept fighting for my good days, knowing that eventually things would get better. At the same time, I know that I will still have flares and setbacks, but I’ve already been through hell and back….I got this! Seriously, we #chronicillnesswarriors can handle anything life throws at us, we just shouldn’t have to 💜. >>> >>> I may still feel like shit most days, but I find myself complaining less and less each day. My spirit is finally healing, my depression has lifted, and that gives me the will to keep fighting. Not just for myself, but for all of us. If you are suffering with a #mastcelldisorder or #ehlersdanlossyndrome , don’t give up! Keep fighting for the good days and moments we do get. Cherish them. Celebrate them. Live for them!
Dysautonomia/POTS (Postural Orthostatic Tachycardia Syndrome) has a fun way of ruining shower time for me. It literally feel like im sooooo drained it literally takes hours to get dressed. #dysautonomia #EDS #heds #ehlersdanlossyndrome #ehlersdanlos #raredisease #chronicillness #chronicpain #pots #posturalorthostatictachycardiasyndrome #dysautonomia #cci #invisibleillness #invisibleillnessawareness #mcas #mastcellactivation #Mastcelldisorder #mastcellactivationdisorder #spoonie
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