Health Update #3

I’ve had a lot of people ask me about my illness, and because of how much they care and the fact that they’ve never heard of this condition, they have a lot of questions. And while I’ve done my best to answer them, it can be difficult (mentally and emotionally) to go over the same information repeatedly.

While my medical team thinks I’m making amazing progress (for which I am so grateful), it has not been enough to change my day-to-day life, which remains the same—unable to work, unable to eat more than four foods, or go most places, taking 36 medications and supplements over 8 times a day, medical appointments 3-5 times a week, etc.

This illness is classified as “invisible,” meaning I don’t look anywhere near as sick as I am. When people see me, they say “you seem so much better,” or “I just know you’re going to get through this.” And while it’s helpful to hear those things, they don’t see how bad things really are. When a friend chooses to come and visit, I don’t want to spend what little time we get to see each other, crying about how much pain I’m in or how terrified I am that this is going to be the rest of my life. I do my best to rally. And while I do think it’s important to get my mind off my problems, I think it gives the impression to people that I’m doing better than I really am.

My entire adult life, I have never wanted to seem like a fragile or weak person who can’t handle things. I have prided myself on how independent, reliable and hardworking I am—that I am the first one to offer help and the last one to ask for it, that my loved ones know they can come to me and I will do whatever I can. Since this illness, I don’t want people to see me at my worst. If I were to share all the horrible details of what I’m dealing with, I worry the few friends that do visit, would dread coming to see me. Because when I’m in my darkest days, it’s very difficult to witness, and unfortunately that burden has fallen on my husband.

I have cancelled on friends because I was struggling too much, and couldn’t tolerate hearing about their lives—whether it be their problems, their social outings, their vacations, etc. Maybe it’s not good for others that I put on a brave face all the time, not allowing them to really know how bad this is. I would also never want anyone who is suffering from an illness to compare themselves to me, thinking they’re not handling it as well as I am.

So here is a list of all my symptoms from Mast Cell Activation Syndrome (MCAS), a chronic, often invisible illness that is wildly misunderstood and frequently underdiagnosed. It is complex, relentless, unpredictable and profoundly life-altering. Some of the minor symptoms started years ago, some of the more serious ones started over two years ago, with the illness coming to a head last August (2024). And none of the doctors and specialists I went to over the last two years knew what was wrong, except the doctor I’m seeing now. Despite the fact that I was walking 2-3 miles a day, lifting weights, going to bed early, drinking a ton of water, eliminated alcohol and caffeine, increased my protein, took supplements, journaled, did work I enjoyed, spent time with loved ones, worked on my spiritual life and went back to church, this still happened.

NEUROLOGICAL
-- Headaches
-- Brain fog (forgetting actions, words, spelling)
-- Weakness causing legs to give out
-- Numbness in my arms, hands, legs and feet

VESTIBULAR
-- Dizziness
-- Lightheadedness
-- Unsteady/off balance while walking
-- Tinnitus (ear ringing)
-- Ear itching
-- Ear leaking
-- Ear flaking
-- Ear aches

RESPIRATORY
-- Coughing
-- Choking
-- Weak voice
-- Post-nasal drip
-- Trouble breathing (lungs feel like collapsing)
-- Trouble swallowing (throat closing sensation)

GASTROINTESTINAL
-- Nausea
-- Vomiting
-- Constipation
-- Diarrhea (burning)
-- Stomach pain and cramps
-- Bloating (like a beachball)
-- Inability to absorb certain minerals and vitamins

OROFACIAL/DENTAL
-- Tooth pain
-- Bruxism (teeth grinding)
-- Temporomandibular Joints Disorder (TMJ)

PSYCHOLOGICAL
-- Anxiety
-- Depression
-- Suicidal thoughts

I know things could be worse. I know how fortunate I am to have found this incredible medical team, to have caught this illness before I became bedridden, to have a devoted husband, to have friends who check in and visit me, to live in a beautiful home in a peaceful neighborhood and so much more. But in my darkest times, it’s not enough and I am so angry with God for allowing this to happen, and not intervening to either completely heal me or give me more relief, despite my begging, pleading, praying and at times, hysterical screaming.

I would love to be an amazing example of not only a Christian with unshakeable faith, but as someone who is brave and courageous despite their circumstances. Someone that my nieces and nephews can look up to and pull strength from when they encounter hardship, knowing that if their Auntie can get through this, they can get through anything. But most of the time, I am none of those things. I am doing the best I can, but it is far from pretty.

Thank you to everyone for their continued prayers, love and support. I need it so much more than you realize.

“The LORD is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 34:18