An Update , News and Thank Yous

It's been a while since I updated on my situation and upcoming Neurosurgeries in Barcelona. A lot has been going on in the background since. This is a very stressful time, emotionally and physically not just for me but for my family also. I am facing in to a surgery that right now is to …

London updates from gofundme page -1

I will be posting screenshots of updates I had written for my gofundme campaign.  I had to start a new page which has none of my updates from before on it. The best I could do is screenshot as much as I could and put it together like this for anyone who wants to read …

My EDS Journey- The Puzzle starts coming together with some PoTs – Pt3

During your twenties your life goes through massive changes, regardless of having a chronic illness or not. People go travelling, finish college, move away. I was kind of stuck in a loop. I had a constant personal limit that was set by a diagnosis. I could only go so far without crashing. I couldn't be …

My EDS Journey- The very first answer. Pt 2

Would I ever know the day when this illness would raise its head so high that it would push me down so hard that my body would give in and I would just crumble?  Did I even think it would ever happen?  I dont think I was ever prepared for what lay ahead. I was …

Looking fresh faced Feeling like a disgrace.

Every Sunday I like to take some time to look after my skin.Its one of the largest organs of our body and has a many  important functions. Everyday its exposed to extremes of temperatures, pollution, oxidative stress. This along with a chronic illness, malnutrition, dehydration and taking medication means you have to be even more …

My EDS journey -The start of the road pt1

Ive decided for May I will post different chapters of my whole EDS journey. It needs to be broken into segments as its a long ol tale. May is Ehlers Danlos Syndrome Awareness month or The Ehlers Danlos Syndromes as they are now known since March 15th 2017. I dont know why that makes me …

When are you off?

Since Christmas I'm faced with this question "when are you off?".                       Its usually asked with excitment when you've a holiday or a weekend away booked. When you are in my situation though it means when are you off to London for medical care again? …

Eds The not so Beautiful Life-London Update

Two weeks ago I finally got to see the Cardiologist.  Its about time its not like my heart hasn't been on a nonstop rave waiting for this 'urgent' appointment referal that went in on August 4th. I've been having none stop issues with tachycardia again since about May again.Tachycardia is a racing heart beat over …

My mother is Midwest Carer of the Year 2016

​Yesterday my mother recieved the Midwest Carer of the Year Award. It was overwhelming and we are all very proud.  I got to read the nomination I wrote for my mams entry. I couldn't remember what I wrote as it was all the stuff that she does everyday and I just typed as if I …

The Chronically Disconnected

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