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your Experiences living with a disability #RareDiseases

A recent blog article asked me what it is like living with disabilities. I thought this was a very loaded question and had some difficulties how to start my response. it ended up being way longer than expected. Fortunately, they saw the value in it, and turned an advocate spotlight into a blog post!


#rarediseasewarriors #InvisibleDisability #ChronicPain #Dysautonomia #mgstrong #mgwarrior #EDSAwareness

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Do you sometimes feel like you should have an honorary medical degree? #RareDisease #RareDiseases

Who else feels like we should be honorary medical degrees considering we know more than most doctors about our #RareDiseases? LOL but seriously, I know I feel like we should.

When was the last time you had to explain your #RareDisease to a medical professional?

#RareDisease #RareDiseaseParenting #rarediseasewarriors



Lately strength has been difficult for me to find. Life has thrown me so many curve balls, and they keep nailing me in the face and abdomen every single time. Why? Why does it have to happen all at once? Why does it have to happen to me every time? It is not fair and I simply want to give up.
When life gets like this and I think I can't handle anymore I always prove to myself that I can. I fight the battles with strength and tears and I always end out on top. I show myself just how strong I actually am. It is never easy I have multiple break downs, but I always end out on top. I always end up stronger than I was before.
This mountain has me thinking back to my first mountain I had to climb. The diagnosis. When I was going through my diagnosis I was seen by 6 different specialist before we found the right one. I was told that I did not have Hereditary Angioedema even though I had all of the symptoms and a strong family history. I was called crazy, told it was all in my head, and that there was nothing wrong with me. I felt like I would never get the diagnosis that I so desperately needed. After a year and a half of this I finally received the magic words I dreamed of hearing, "you have Hereditary Angioedema". Dreaming of getting a diagnosis seems silly, but when you have something incredibly wrong with you it is needed. 
That was just one mountain I had to climb to get to where I am now. It was rocky, I slid down a few times, but I never gave up. I kept fighting and I still fight for myself everyday. I fight for my health, meds, and treatments I need. The mountain that I am facing now is a big hurdle. It is taking so much energy out of my fight, but I am not going to give up. I will find the strength I need, and I will win. 
Once I get over this mountain it will be another memory that I can look back on. I can look back and see how far I have come, and how strong I really am. I will continue on my journey and keep pushing through whatever life has for me.

#strength #HereditaryAngioedema #ChronicIllness #RareDiseases #Thoughts #rarediseasewarriors #Undiagnosed #lifewithchronicpain #ChronicPain

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#CheckInWithMe Parents of kids with #RareDiseases

Let me know how you are doing! Life gets crazy busy caring for our kids that we often forget to check in with ourselves.

Personally, I am exhausted. Between my oldest daughter's schedule and making sure my youngest gets in PT, OT, and Speech Therapywith us at home in addition to her actual therapy appointments makes for a long day after work.

#tellushowyouaredoing #SpecialNeedsParenting #ParentAdvocacy #rarediseasewarriors #RareDiseaseParenting

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