My diagnosis so far in more details

 I’ve mentioned Addison’s before but I want to go into more details on what exactly this is. My body stopped making enough of stress hormone called cortisol. Those that know know the last two years I have have to fight for my youngest in what was a never ending battle to get him medically stable. Earlier this year he had a central line and was in and out of the PICU. I find it kind of funny for all things to not work in my body is that fact it’s not making the stress hormone. I joke with my doctors that I used my life supply already! 

So cortisol is something my body produces in response to physical and emotion stress on your body. Without it you can go into acres all crisis and slip into a coma and die. It’s not to be taken lightly.

Things I have experienced this summer they have linked to my low cortisol levels are, nausea, rapid weight loss ( sounds great but actually miserable) hypoglycemia, hypotension, tachycardia, vommiting, abdominal pain, chest pressure, weak limbs, fainting, confusion, exhaustion, blurry vision, hair loss from malnutrition And dizziness I have fainted over 6 times this summer, 2 times resulted in a concussion . Not something a 34 year old music and dance teacher is used to feeling. 

A strange clue was when I had anaphylaxis to my lipids and had to epi and go to the er they also gave me high dose steroids and for the first time I had no pain and for a few hours I could drink more. The er doctors said that was strange but had no idea why. 3 weeks later while at UCI the residents asked so many questions and were interested in the fact steroids helped. They ordered a cortisol level which came back as .6 ( way too low ten is the lowest normal number for the morning) they then did a stimulation test to get my adreanals to produce more..... they didn’t... 

At this same time I kept mentioning to the docs I think I have MCAS like both of my sons. In fact my sons doctor has told me to get tested but my doctor had said it was rare and I was too healthy to have it.... hahaha until I wasn’t too healthy.

Mast Cell Activation Syndrome is a nasty and not well known condition. It is hard to diagnose and there is much debate in the medical community about the criteria. It also presents different in different people. My oldest for example gets bone pain and some other mild symptoms. My youngest lost his ability to eat without reacting for a few months and needed massive amounts of IV benedryl and steroids to get stable. My youngest is doing great now but still needs several meds to keep him stable.

Everyone has Mast Cells but in people with MCAS they cells misbehave and over react to foreign things in your body. It’s like your immune system releases everything to fight the worst plague but all you did was eat a banana. It is similar but different from autoimmune conditions. Autoimmune is your body attacking itself. MCAS is the immune system trying to attack an invader but it’s over reaction causes damage to your body. Treatment starts with h1 and h2 medications which I am currently on.

For me we are not sure how much is the Addison’s and how much is the MCAS. The treatment for the Addison’s is to take daily steroids in the lowest dose possible to replace what my body doesn’t make. Too low a dose I get sick, to high a dose I can gain weight, lose hair, get high bp, high blood sugar, mood swings or develop Cushing. So it’s a fine balance and some days I will need more due to physical or emotional stress. That is called updosing and by updosing I can hopefully avoid more hospital trips. So the plan is to give my body six weeks and see where I am, if I am still having trouble it could be the MCAS. Both conditions can flare if the other one is flaring. 

Now what does this mean for my ability to live life? My body is weak now, and needs time to recover, however there is no reason to think I can not go back to my old life with adjustments. I have to wear a medical alert necklace and always have my epi pen for sure. This week I am going to switch from the wheelchair out of the the house to a seated walker. Why do I need this? I’ve spent a good chunk of the summer malnourished ( lost 30 plus pounds ) and I can get waves of dizziness from orthostatic intolerance. So the seated walker will help me build strength and be there when I get hit with the dizziness so hopefully I will not faint. I am not currently driving and won’t until I am at lower dose of my steroids with no dizziness for 2 weeks. A little over a week ago I was able to sing for worship service as long as I sat down. I will be able to slowly add things in as long as I take it slow and listen to my body. I plan to start teaching a little in October. I just have to sit more, no dance yet and really pay attention to how I move. I really miss my students, and coworkers so I am excited to get back to it just a little bit.

Yesterday I was supposed to be released but we had a set back with home health so that was pushed back until today. I have home health because of my NJ feeding tube. I have a small tube that was inserted down my nose all the was to my intestines. This will allow me to get nutrition while we wait for the steroids To do their job. The home health is what sends the formula ( Kate Farms is vegan and one of the few formulas that is free of my allergies) and a nurse to check on me and help monitor how I am doing. Here is my I am excited to leave the hospital photo! 

Xoxoxo,

Mary