November 11, 2016

The Slow Fade

People never crumble in a day. It's a slow fade.

The beginning always seems like a very good place to start {who got the reference??} but it's hard to know when the beginning is for me. I do know that symptoms started to JUMP out at me in January of this year, so I guess we can start there.

Since January, I've been tested, re-tested, poked, prodded, scanned, sampled and spent more time in health care facilities than I care to admit. I've been moved around from specialist to specialist, words like tumor were used more than once by more than one physician and I've had to FIGHT every day to get to today. To this time where I've finally had the right amount of tests and finally the right specialist agree with me about my symptoms.

If you're not up to speed on where this journey has taken me, feel free to visit the Autoimmune & PCOS tab at the top of this page for a link to my past posts.

During all of this, it seems as though disease as just run itself DEEP into my family. My mother and grandmother have both been diagnosed with life changing illnesses. My mom mirroring a very similar journey to mine - long, lots of doctors, no answers, no cure - just management of symptoms. It feels and seems as though these issues are deeply genetically linked and it's like waiting for a bomb to go off and see who it effects in our family next.

There have been many, many days and nights of tears. Many nights spent praying. Many days spent wondering what this is going to take away from how my life COULD be. Many moments wondering "what if..." or "will I ever be able to do...."

After spending hours with a specialist who finally sat down, listened to my entire story and reviewed my pages of typed up notes, lab results and other doctors notes we determined a few things right off the bat. 

Asthma and Mast Cell Disease.

Asthma is treated with breathing treatments and daily prescription medications. This also helps prevent any infections that develop into raging bronchitis making it extremely difficult for me to breathe {like I've had to deal with multiple times this year already}.

Mast Cell Disease is a monster. Not only is it rare and not many doctors even know what it is, let alone how to treat it, but it's DIFFERENT for every person it effects. The short version is - everyone has mast cells. They are a type of white blood cell and they are responsible for keeping your immune system healthy, happy and working correctly. They also play a key role in the inflammatory process. MCAS is still a poorly understood condition and is a current topic of research.

Primary symptoms include cardiovascular, dermatological, gastrointestinal, neurological and respiratory problems - all things I've continued to struggle with. There are no known causes, but the condition appears to be inherited. The condition may be mild until exacerbated by stressful life events, or symptoms may develop and slowly trend worse with time.

I have good days where I feel almost normal again and I have really, really bad days where it's difficult for me to even get out of bed. There's no "answer" as to what causes the flare ups. There are just some known triggers that I have to constantly be aware of and pay attention to.

Common triggers include:
    -specific foods and drinks (especially alcohol, and high-histamine content foods)
    -temperature extremes
    -airborne smells including perfumes or smoke
    -exercise or exertion
    -emotional stress
    -hormonal changes, particularly during adolescence, pregnancy and women's menstrual cycles
Now we know why things like this started happening when I would drink alcohol...

And why daily, for the last year, I've broken out in hives all over my body. Most recently these outbreaks would start on my lips and face (which is scary considering breathing is necessary for life)

I've spent more hours than I can count in hospitals, doctors offices and labs desperately seeking answers for why this keeps happening...

I've also seen an Endocronologist who tested as sorts of other things relating to adrenal issues, hormonal issues and food allergies. You'll see below my handy brown folder. I take that everywhere because it's my holy grail of medical information about myself. Doctors can make much better informed decisions on treatment and tests when they have ALL the info. Never rely on your memory.

At the end of the day, I'm sick. The details on how, why, what, etc may never fully be understood. I pray that sometime in my lifetime those questions are able to be answered. With the way it's looking, that may or may not happen, but MCAS (Mast Cell Activation Syndrome) was only recently given a name in 2010.

My plan now? Live every day as it comes.

Some days I feel great. I have energy, no triggers seem to bother me and I'm able to exercise without a flare up. But, then I likely suffer the consequences of "feeling good" for days on end. I may not have another "normal day" for a week or more.

It's all about living one day at a time. I'm learning to listen to my body, be EXTREMELY in tune with how I am or not responding to things, and always keeping my meds close by in case of a flare up.

I don't share this as a "pity plea" or grabbing for sympathy - the opposite actually. More to help educate the people around me and even those who aren't.

NEVER judge a book by it's cover. 
You never know the battle someone else is fighting.

Through everything it's inspired me to figure out how I can be my BEST SELF despite everything I have to deal with and I'm working REALLY HARD behind the scenes for what that looks like for you too. 2017 will be a fresh new start for me and I hope you will feel the same way too. I will have a new challenge opening in January called "My Best Self - Renewing from the inside out" that will be completely focused on feeding your spirit, sharpening your mind and transforming your body.

I hope you'll always consider the possibility that things aren't always as they appear when you find yourself jumping to judgement {don't skim over that - we ALL do it from time to time} when you see someone in person or online. Everyone has a story. Everyone's stories are important.


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