A milestone for me after years of being allergic to common smells and missing out on foods. I can finally eat eggs which means I can have mayonnaise! Which means ANIMAL STYLE frenchies! Ahhhhhh! My first time ever!
Just for a little bit of a background, I was on a medication called Prograf which is an immunosuppressant medication to maintain the health of my transplanted liver. You have to have these medications in order for your body to NOT recognize there is a foreign transplanted organ but also recognize that it’s now yours and to work in your body(and avoid rejection). In my case this particular medicine mutated my mast cells causing severe anaphylaxis allergic reactions to literally fucking everything. I spent years crying to my allergist and years of trying so hard to be consistent with allergy shots and xolair injections. But honestly I think just getting older and growing out of it helped.
Many people look at me and think I’m fine or have trouble believing me when I open up about my health problems. So many people just respond with the arrogant “I have allergies too” response and my mind is just blown with the lack of understanding and minimizing of my personal chronic health problems that is simmered down to “allergies”. It is not allergies it is a problem with the way my cells are being created and the level of reactivity of mast cell receptors. I just don’t know how to react and it’s just not my responsibility to have to explain and prove myself to people. People can have their own opinions but we will always know who we are in our hearts and souls. Only genuine people will be able to see what we go through.
#innout #idiopathicanaphylaxis #posttransplant #invisibleillness #mentalhealthawareness #depressionisreal #airborneallergies #eggs #mayonaise #animalstylefries #mastcell #mastcellactivationdisorder #health #genuine #xolair #allergic #chronicillness #livertransplant
tonight i had my first emgality injection!
one of the great things that came from my neuro appointment was a real plan to manage my spinal headaches. i almost always have a migraine, due to my instability. finally, we’ve decided to try a once a month antibody injection.
fingers crossed that emgality does the trick for these annoying neuro symptoms!
Breakfast in India!! 😂 not a single thing on this plate I used to be able to eat! Now here I am, in India, and eating it ALL!!!!!
Winter is coming - but me and the bear are ready 🤙🏻
everyone’s favorite physical therapist tech and physical therapy patient 😂
4 bags of ice + cold water🙌🏻
This legit reduces inflammation quickly and has a major calming effect-after the initial shock wears off of course! I’m just a girl with mast cell activation syndrome & Lyme disease trying to be able to go to the gym regularly. Recently my body has been super inflamed and I’ve been getting injured a lot. I’m determined to get back into a regular routine with weights, yoga, & ballet so these baths are going to be happening regularly.
I had stopped one of my #mcas
meds, ketotifen, and think that’s a major part of this flare of symptoms so back on it plus so much more tomorrow.
Practising gratitude is just as important on the bad days as it is on the good ✨
Three things I am grateful for today:
1 - Friends who are happy for me to turn up to a dinner party with unwashed hair, no makeup, a bag full of meds & my hot water bottle 😂
2 - Being able to get my treatment here in London -so many with this disease can’t access or afford the medical care they so desperately need. Also for my total angel of a friend Laura who came to pick me up & take me to treatment on Friday when I was so sick, & kept me company all day during my IVs 💉
3 - Coming out of treatment to an amazing view of the most beautiful Christmas lights on Regents Street
I hope everyone had a lovely weekend ⭐️💕🌼
After six long years of being deeply chronically ill — suffering from Lyme disease, a handful of co-infections and mast cell activation syndrome (MCAS) — I’m now in remission, going from 0% to 70-80% better in just a year and a half.
People are always asking me how I’ve gotten better, how I turned my life around, what changes I made to get such huge results, and as always, people continue to ask me all about what my illnesses even are, how I got them, and what it’s been like to live with them.
I finally decided to take all of those frequently asked health questions and turn it into a Vlog series on my YouTube channel.
I also have a five-part MCAS series sharing about what it is, signs and symptoms that I personally experienced, my story and the story of my friend Alex who tragically passed away this year from the same illnesses I had. Last but not least, I share my 20 steps to healing, which is the video I’m sharing here today.
These 20 steps of healing are not only how I’ve treated MCAS, but they’re also my last phase of healing from Lyme disease & co-infections and how I got them to stay in remission.
They’re how I’ve healed from neurological problems and mental health struggles as well. (Those include: PTSD, panic attacks, OCD, germophobia, depression, depersonalization, etc.) They’ve also greatly helped my issues with gastroparesis, endometriosis and ovarian cysts.) I don’t say these healing steps are a definitive “cure” or will work for everyone, nor do I recommend that others do what I’m doing. I always suggest seeking professional advice, and above all else, finding what works best for YOU and your unique health needs.
After years of trial and error, I finally found things that work for me. They didn’t “cure” me, but they improved my life so much. Being 70-80% better is the best I’ve done since I got sick six years ago, and I’m continuing at a steady pace of forward progress too!
I hope my story gives hope and inspiration to people who struggle to heal themselves.
Savannah Marcum is 20 years old and lives in California. She writes a blog called “Welcome To The Life Of An Insomniac.” On Instagram, she is @_heyo_its_mayo_
Last year my friend said “I’m getting married in India” and I said “ha! Have fun with that...no way I could ever go to your wedding, when I can’t travel farther than a couple hours from my house due to not being able to eat or be around any sort of chemicals or people wearing chemicals. Hit me up if you have a wedding in the States and I’ll do everything in my power to try to go for the weekend.” ....Fast forward to DNRS, and the brain retraining that changed my entire world, allowing me to eat ANYTHING, and be around perfume and fragrance and people again! Then a month into doing DNRS, my mom called me and said, “hey, Dad and I are going to India for the wedding this November. Want to come?” I laughed. And said, “I can’t do that!” ......and then said, “oh my gosh....Can I....? I wanna do it!! Let’s go to India!!!” And now, 7 months into doing DNRS, I’m sitting in the airport, waiting for my more than 24 hours of travel time, with 22 hours in the air ✈️, waiting for this amazing adventure to start. An adventure I never could have done before DNRS. 💚 I am SO grateful to the Dynamic Neural Retraining Systems for allowing me to get my life back. Allowing me to sit here with my husband, about to board a plane to meet up with my parents and to then fly to India! 💚 Can’t believe this is my life!! Never could have imagined this 8 months ago! 🤗
Early morning ✈️. Got a little DNRS help from the Lyft driver with all the fragrances and chemicals he had in his car! Happy to report no symptoms, just lots of smiling through it and telling myself I was totally fine. 😁 And I was. 💚
You never know how Ehlers-Danlos will affect you from day to day as it’s so multi-systemic. Last Monday on my flight home from Boston after 7 weeks of travel I got a really bad nose bleed. Totally embarrassing being on a plane and bleeding everywhere, but there you go! I get nose bleeds from time to time so didn’t think much of it and put it down to all the flying and dry air, but when I got home I have had a bad nose bleed everyday since. Having things stuck up my nose is my worst nightmare and I have a super irrational fear of anything ENT related but I couldn’t put it off any longer after being woken up choking on blood a few nights ago... they discovered I had quite a few raised ruptured blood vessels so I had to have them cauterised so I would be all dandy for my flight to Australia in a few weeks. I overcame my fear (just) you can actually see how hard I am holding my hands together, but luckily the Dr was very patient and most importantly knew all about EDS - so when the local anaesthetic didn’t work the first time and then only half worked the second time he knew exactly why, gold star!!! So no lifting or exercise for a week or so, and fingers crossed - no more bleeding! 🤞🏻👃🏻
I’m three week’s post op from my 7th surgery related to endometriosis. I’m thankful for the skilled team of surgeons that successfully excised multiple pelvic adhesions, an entangled twisted mess consisting of my sigmoid colon, stuck to my bladder, hysterectomy scar and an umbilical hernia. Everything was being push and pulled, and adhered to my left pelvic sidewall. The pathology results also confirmed the presence of mast cell activation. Scientists believe there is a correlation between Mast Cell Activation Syndrome and Endometriosis, but it has yet to be proven and there’s a lack of education and funding for both. As challenging as it was to find an endometriosis specialist, finding a mast cell specialist is proving to be equally tricky. The crazy thing about all of this, is on the outside I don’t look “sick”, just severely bloated from substantial inflammation. Close friends and family would notice my off days when I could no longer act better than I felt and the pain could be seen in my tired looking eyes. Overcoming endometriosis has been the biggest challenge I’ve ever faced. Endo has torn through my body and my life, testing the strength of everything I know and love. I can’t possibly explain the profound impact endo has on a woman’s life, in a single post. I currently have an extensive endo project in the works, which I’m excited to resume once my energy’s returned. I’m happy to share, so far my recovery is off to a good start, and I can honestly say I’m feeling hopeful that I’ll be strong enough to handle the weight of my photography gear again. God I’ve missed it! 😭 For now, I will continue on a healing path, surrounding myself with positive people and energy and not let anything bring me down or prevent me from properly kicking endo’s ass. 💪🏼💛 Thank you to all the brave women who’ve openly shared their endo struggles. If we stand united our voices get louder! 🙋🏻♀️🔊#WeMatterACOG
For more information about endometriosis, I highly recommend watching the @endowhat
documentary and checking out FB groups, Nancy’s Nook and Endometropolis which are all exceptional resources for information and support. #Endometriosis #1in10 #endometriosisawareness #iphoneX
Getting my infusion while at the drive through pharmacy - how I love my portable CADD pump 😍 and side note, drive through pharmacies are the best invention ever. For some reason the pharmacists give me no grief at the drive through window 🤷♀️ maybe because they have more pressure to get people through the line? And it's so helpful not to have to get out of my car. It's the little things... Hope everyone is getting through the day ok ❤️
i had an amazing neurology appointment this morning!
going to see a new doctor can always be frightening, but i finally found a great new neuro!
she is familiar with EDS and POTS, and is genuinely invested in getting all my issues sorted out!
Yesterday, I had a rather upsetting moment as a disabled person. I was targeted, cornered and forced into a stranger putting their hands on me to perform a "healing". To preface, I'm incredibly familiar with strangers coming up to me, saying they'll pray for me, Jesus will heal me, they want to bless me or assure I'll get my miracle. There are a million problems w/ this (a conversation for another day), but I know how to navigate these experiences. THIS was unlike anything I've ever been through and took me hours to even find my feelings -- which were very not okay.
I went to get my hair cut and there was a man there when I arrived. He was leaving soon after, and the salon was running behind. They're personal friends so I was okay w/ chilling for awhile to help her catch up. An hr and a half later, we're getting ready to leave, and this guy comes back in the door and is just staring at me. If he didn't seem to be friends w/ the shoppe owners too I would've outright panicked. Out of discomfort I made a joke he just couldn't get enough of us and wanted to see me again. He goes, "Actually yes, but more than that. I want to pray for you. Perform a healing."
I turned cold and the room went silent and I was just SO caught off-guard by this total stranger being this intense, that I couldn't think clearly. He said he just felt this calling to come back and help me. ...an hr and a half later than expected and EXACTLY as we were leaving(?). My mom was w/ me and her discomfort was immediate. She came to rescue w/ excuses, that she needs to be home, we need dinner, hands me my coat -- and he didn't even register or acknowledge them, just stood there, waiting, blocking the door, not letting me leave. That's when I felt genuinely threatened, and also hyperaware *we* seemed like terrible people (in a room of faith-driven folks; in Trumpville, mind you; staring) if I turned down this great, selfless service. Even my mom changed her tune to a "we have time for a quick prayer" bc the intensity in his face and the room was SO clear that "no" wasn't an option. We were trapped. I was trapped.
He put his hands on me, I started to shake (uh, trauma survivor, cult abuse) [cont'd]
Celebrating a huge victory today!! It took over two weeks of effort, but, we were finally able to get [generic] EpiPens!! We are beyond grateful my specialty pharmacy made this happen! I was really getting nervous not having any Epi on hand in case my body decided to throw another anaphylactic fit. For those who may not know, there is actually a nationwide shortage of this life saving medicine. I’ve heard more than one story as to why it happened, so I won’t get into how it started. Whatever the cause, we need this shortage, and the shortages for other life saving medicines like Benadryl, to stop NOW!! People’s lives are on the line!
It's been awhile since I've posted anything about my chronic illness journey, mostly because I've been busy- my hubby is undergoing hyperbaric treatment and I'm on my own for all the chores we usually do together. Well today it all caught up with me and my body reminded me that I'm not invincible. With #ehlersdanlossyndrome
, and other stuff going on, if I push myself too hard and for too many consecutive days, I crash- so today I feel like I got hit by a car and am walking in quicksand. This means my daily chores are put on hold and I NEED to rest. In the meantime I'm waiting on more test results from my doctor for some ongoing issues, including continued low grade fevers, hair loss, and swelling. I also got a new xray of my neck showing disc degeneration at c5-6 with anterior bone spurs...next is an MRI. So a lot has been happening! To all my fellow #spoonies
hang in there!
#eds #mcas #mastcell #chronicpain #chronicillnesswarrior #chronicillness #spoonie
If you haven’t heard yet, I finally started typing away my thoughts and launched a BLOG! (link in my bio!) Honestly, there’s no way I would have bothered to give it a thought if it wasn’t for all of YOU.
The incredible, strong, inspirational people I’ve met through sharing my health journey here on social media.
Life alone is hard ... Throw a chronic illness into it and it gets even messier, but I wouldn’t trade my struggles for anything else.
I’m THANKFUL for my illness because it’s allowed me to connect with you all and form some forever friendships on here.
THANK YOU ALL for the endless support, love, and friendships you’ve given me thus far. I truly enjoy reading each and every one of your messages so keep them coming - don’t ever, ever hesitate to reach out!
I so hope you enjoy reading my blog as much and I enjoy writing it & I’d so love to hear your thoughts on it!
Have an idea of something specific you’d like me to blog about?! Comment below or send me a DM! XOXO
Two new posts are up on my blog - day seven & day eight of my Stem Cell treatment at Infusio
Two of the hardest days of treatment I have ever done, & I was so sick I pretty much spent the entire time in this position, looking & feeling pretty terrible
The last week I’ve not been feeling well at all, which has been really affecting my spirit, but in a funny way reminiscing & writing about these tough days has given me a real boost to stay strong & keep fighting. I can vividly remember just how sick I was, & how I was convinced that I would never feel better & I wasn’t strong enough to push through, but somehow i managed to do just that. It’s easy to forget all the difficult things you overcame in the past, & I’m definitely guilty of always looking to other people for inspiration, using other people’s triumphs and persaverance as motivation for myself to do the same. I often forget about the hurdles I have personally overcome, all the times I got through things which seemed impossible, but the last couple of days I’ve tried to focus on these & draw strength from them, & I’m going to make a conscious effort to believe in my own resilience going forwards ⭐️
If you would like to read my journal entries the link for my blog is in bio
Hi friends!!! I decided to make a separate Instagram page to document the rest of my journey of getting my health back and update friends/family who are interested. I figured this would also be good way to do so 💚 for those that don’t know:
About a year and a half ago, in June 2017, I became extremely sick with excruciating headaches and flu-like symptoms a week after going camping. Living in Nebraska where Lyme Disease is labeled “not here” by the CDC, these symptoms were just labeled as a virus and something my body should eventually fight off. Well, knowing I had Lyme myself—four visits to my PCP, a PA visit, three infectious disease doctor visits, a rheumatologist visit, and hundreds of new symptoms later, we decided to make an appointment with now my Lyme Disease doctor in Minnesota, and I finally got diagnosed with Chronic Lyme Disease, Babesia, Bartonella, etc. five months later in November. This past year has been so crazy to say the least, I have been unable to attend my last two years of nursing school the past two years, my whole life has changed, and it has left me unable to live life remotely close to how a “normal” 21-year-old does. My Lyme Disease has also brought on other problems like heavy metal toxicity, Mast Cell Activation Syndrome, and thyroid nodules. However, I have made some progress, and I am determined to get better. Lyme sucks, but there are positives to every situation, and better days are coming 💚💪🏻