The Journey Continues ...

Good Morning Bleeps.

I haven't really felt much like blogging lately as you may have noticed. I was building up to last Thursday (12th) with such high hopes of answers and sadly it was not to be. In fact, I left the appointment with nothing ruled out and just more possibilities added to the list.

I think maybe I am destined to live in limbo land forever. My Lumbar Puncture came back negative so my Neurologist wants to run more tests. He pulled up the pictures of my brain MRI and pointed out the small white plaques on my brain, which he said he isn't really worried about but then there is a big one right next to some lobe or other that he doesn't like the look of. He said he isn't ruling out MS but wants to do an MRI with contrast, a CT scan of my chest and a load more blood tests. I am starting to feel like a bit of a lab rat and also more than a bit sad.

Yesterday was what I would call a bad day. Dizziness, numb face, numb thigh, blood like iced water, vision all squiffy and exhausted. I sat on the sofa thinking "WTF is going on in my body and why is it so flipping hard for a Doctor to figure it out?!"

I have had many people write to me and tell me how they were in limbo for years, what I depressing thought. In some ways I am extremely grateful to my Neurologist. After all, he could just "rubber stamp" me as an MS patient and tell me to have a nice life. He said he doesn't want to stop looking, just in case. I respect him for that, even as frustrated as I am, he is doing his best to get me my answer.

He said he isn't "worried" about my symptoms (I hate when he says that) and I do get when he means. I don't have symptoms that will kill me (although when the chest pains hit I do sometimes worry about dropping dead of a heart attack) but like I said to him, even though my symptoms might not be life threatening, they are affecting my life every single day.

I am unable to take on photography work as I don't know from day-to-day if I will be able to drive or if I will be too dizzy or fatigued. What can he do though? What did I expect from him? From a medical point of view he is doing what he can do. I have to find a way to make peace with my current situation and just ride the ride.

Leading up to my appointment I had lots of good luck wishes, which was so lovely and so appreciated. A couple of my friends told me to "put it in God's hands" and trust "His" plan. Now, I have a confession; I am NOT religious. I am not even sure that I believe in God. I struggle with it because I WANT to. I really do but I just don't know if I do. I am on the fence. I wouldn't say I am an atheist but I am not convinced either. I do believe in fate. I do think that everything happens for a reason.

As I sat in the office and my Neuro started talking about lobes and the biology of the brain, my gaze wandered out of the window and I found myself asking "what am I here for? why is this happening?"

Who I was asking I don't know really. God? Myself? The Universe?

If it wasn't for that brain MRI I would be starting to think it was all in my head and that I am going mad. Maybe I am not meant to find out, maybe this is my fated path. Maybe I am supposed to just blog and share, to reach out and maybe touch people that could possibly be in a similar place, so that they know they are not alone.

Over the last few months I have made some really good friends, people that I know I will have in my life forever. If it hadn't have been for getting sick and starting my blog this would never have happened. Maybe this is the answer to my question of "why?"

I left the appointment feeling so very sad. Phil had arranged to take Megan to Karate so I had the house to myself. I poured myself a large glass of white wine and had a bloody good cry. I felt so sad and so lonely. I had put so much of my energy into that appointment and it was such an anti-climax when I left, still none the wiser and waiting for more letters for yet more tests and appointments.

I am exhausted both mentally and physically but I will just have to keep my chin up and get on with it. I don't really have much choice do I?

So enough about me, how are YOU?