Red and the Big Bad Wolf

The story of me – Red living with Myasthenia Gravis or the 'Big Bad Wolf' as I prefer to call it

It has been a LONG time between my last blog post and today – and I would like to apologize for the silence. It was for a good reason and because of some big changes.

If you read my blog you will be familiar with my Lupus diagnosis story that I am in the process of telling. Well, guess what it is no longer my Lupus diagnosis story! To be safe I am just going to call it my diagnosis story! Why? It is simple, I never had Lupus! I was yet again misdiagnosed! MEH!!!

My current diagnosis instead of Lupus and Myasthenia Gravis is – Fibromyalgia and Myasthenia Gravis. Although I really believed in my previous diagnosis; I really do believe in this diagnosis. Why? Call me crazy? Well, here are the reasons:

1. There are many similar or shared symptoms between Lupus and Frybromyalgia. As a result they are often cross diagnosed for the lack of a better phrase. For all I thought I knew about Lupus, I didn’t know this!

2. My ANA blood test that confirmed my Lupus diagnosis was borderline and a false positive. I went for a second opinion with a new rheum who ran two ANA blood tests that were both negative.

3.There is an 18 point test physical examination to confirm a Fibromyalgia diagnosis – I had pain in all 18 points across my body.

4. Having Lupus and Myasthenia Gravis together is very rare and I must admit I have wondered about how special a case I really was.

5. Having Fribromyalgia and Myasthenia Gravis toghether is very common.

6. The medication is working and in my mind if the shoe fits…!

This new diagnosis is a good thing. I may have pain for the rest of my life because of Fibromyalgia, but my risk of dying from it is low to none. With Lupus my risk of dying from it one day was high. See – silver lining! 🙂

Despite the fact that the new diagnosis was a good thing it was a tough change for me. I have accepted that I had Lupus and even had a bloody blog that was all about it! I felt so lost and so humiliated – almost like I have been lying to everyone. I actually have to go back now and edit posts and perhaps even the name of my blog. It seemed so daunting that I haven’t felt like touching my blog until now.

In between my health has been up and very down because of my Myasthenia Gravis, the Viking and I have been holiday – silver lining! :), our house was burgled, etc., etc., etc.

So with all of the above I really haven’t had the will or the time to touch my blog, but I did feel that it was time to share this with all of you.

It will probably be a while till my next blog post as I still have lots of admin related to the burglary to do! MEH!!! I am however excited about a ride a long with the Police tomorrow to dodgy Pawn Shop where some of our stolen goods – hopefully the sentimental ones – will be! I will keep you posted!

Lastly, I want to extend a BIG and heartfelt thank you to my darling Viking, my family and close friends for their love and support during the past few months! (As always!) Without all of you I wouldn’t be where I am or who I am. Especially without my Viking and our dog children.

I wish health and happiness for you!

XO

The Viking trying to hide in a snowy Stockholm. :)

The Viking trying to hide in a snowy Stockholm. 🙂

My attempt at hiding in the snow. My trusty cane / walking stick didn't pose for this photo! Yay!

My attempt at hiding in the snow. My trusty cane / walking stick didn’t pose for this photo! Yay!

 

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