October 31, 2014






I really need to write a thank you to the person who invented the ability to email doctors’ offices. 


I am waiting to hear back from the vascular surgeon about my “NUTCRACKER syndrome.”  Yeah, that’s the name of it.  Can you even believe that?  Anyways, it’s possible that this compression of the artery thingy going to my left kidney is what is continuing to cause all the pain I am having (well the abdominal pain.)  I am so lucky because I can just shoot an email to my care teams whenever I have a question or concern.  That makes it WAY easier than calling in and having to describe to some receptionist who has no medical knowledge what the heck I am experiencing....

October 30, 2014

Good and evil

Today I woke up very happy. I had a great night sleep which I swear makes all the difference in the world when you're chronically ill. If you can't sleep at night and wake up every couple minutes or hours in pain or sick and it sucks. But today, I woke up excited for Halloween. I'm excited because Halloween signifies a chance when kids get to be something other than they are. Kids are naturally pure, simple, happy and innately good. Halloween gives them a chance to be something that they're completely not.  They can be monstrous, be characters and I just think it's fun because they're having fun.

I can actually move my hips today. That's amazing that makes me happy. Hopefully it sta...

October 29, 2014

Yesterday I got both hips injected. MAN, did that hurt.  I am still wobbling today. If you would have asked me yesterday if it would have been possible for my right hip to hurt any more than it already did I would have laughed and said “HELL NO.” Turns out- I was wrong.  LOL.  When things go wrong in the body it’s so weird because I have no idea what to compare it to.  I wish for a second I could be in someone else’s body to see how it works so I would know what in mine isn’t right…IE: my hips popping out every time I walk or the intense headaches I get.


I think if I could be in someone else’s body I would do two things.  I would run, like really run, until I couldn’t run anymore...

October 29, 2014

My daily life is pretty easy to explain I wake up around 8 AM. I drink a huge glass of water then I eat a low-carb breakfast and two big cups of coffee with these I take my medicines that will hopefully keep me living one more day. The coffee has caffeine which supposedly kick starts my heart into a normal rhythm (who knows if that really truly works...Mayo says it does??) I have to eat low carb in the morning because my body doesn't like carbs…well…I should say the give me tachycardia and I get heart palpitations, which means I pass out.


I eat my breakfast and I watch TV.  In the morning and watch ABC.  Good morning America and live with Kelly and Michael are my favorites.  While I do that I l...

October 28, 2014

So I finally have a blog.  


People have been telling me to write stuff down for as long as I can remember. I guess it's hard to process my life mentally and I think maybe making it come to my fingertips will help me give me less anxiety?  Stuff like that…


SO where to start?  WELL, “it's not cancer” Hearing that is always good right?! I have been tested for cancer 700 times I swear and it never is cancer.  They always make you think it's cancer- until the very last test…until the most specific test comes back- Then they tell me it's not cancer.  At this point in life I just wish they'd say it IS cancer. That way if I would need surgery, radiology, and chemotherapy I would be healed.  I am sure no on...

October 27, 2014

October 27, 2014

My frist entry will simply be a list of the things that are "wrong" with me.



Postural Orthostatic Tachycardia

Ehlers-Danlos type connective tissue disorder

Orthostatic Intolerance

Vaso-Vagal syncope

Cardio-neurogenic Syncope

Chronic Migraine

Low-blood Pressure

Gray- Platelet syndrome

Traumatic brain injury (multiple concussions from

syncopal events)

3 Herniated disks in neck

Hashimoto thyroiditis

Nutcracker Syndrome

Kidney stones

Large Thyroid nodule

Chiari type 1 malformation

Spinal Syrinx



*In 2006 I had a West Nile type virus

*Currently recovering from ischemic colitis



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