18 January 2011

Be Careful What You Ask For

I can remember being told – “Be careful what you ask for…” The biggest example I was given – was with Patience… when you pray for patience, well – you’re put to the fire & tested… and at the end of it – hopefully you learned that you have to have patience in many situations. Well – I never wanted to go through the fire & testing – so I’ve never actually prayed for patience… that doesn’t mean that I never went through some trials – but – I never went specifically in search of learning/obtaining more patience. (My children can attest to that!) But – I’m getting away from my intended subject matter…

I write this specifically in regards to my life with multiple sclerosis. In the summer of 2010 – I went through a period of time where I literally could not feel my left leg – at all. It was there – it just didn’t register. I recall one neurologist at a university - that may not of completely believed me – who actually drew blood by poking my foot with a safety pin needle… Anyway – I remember whispering thoughts, prayers, and wishes – that I could feel my left side again. It was truly troubling to me that I couldn’t feel the touch of my children – or my husband – and I longed for sensation to return. Well – my prayers/wishes were answered… I can feel my left side now – but I feel everything wrapped in a thick layer of pain. It’s a pain the most OTC pain relievers can’t touch… you see it’s still related to the MS & some pesky misfiring nerves.

Moral of the story: I just need to be a bit more specific when I send up those whispered prayers… “please let me feel again – the true sensation of touch & control – without the caveat of a layer of pain.”

We’re working on finding the right medication to help alleviate the nerve miscommunication – but in the mean time when people say “It’s all in your head” – well – I just have to agree. 

11 January 2011


Okay - so I disappeared again for a while...  The holiday season (I consider that to be Halloween through Valentines Day) has been exhausting. 

Today I'm taking some time to catch up on the things that are important to me.  (warm & fuzzy, I know)

Anway - I'll jump into things... I'll admit that my MS has progressed some this last year... the relapse I had in June still likes to rear its ugly head & remind me that it's not completely gone & I better get used to it being with me off and on. A few new symptoms are appearing - one that I call my 'brain-pain'... which just means I'm experiencing pain for no apparent reason - and I can't explain it and none of the OTC pain killers have done a thing... thus the name 'brain-pain'... I think it sounds better than just saying it's all in my head...

My medical experiences the last two months have been horrible for some reason... let me share:

I had a MRI mid-December - and was instructed (for the first time ever) to completely disrobe...  Are you kidding me?!?!?!  It's not my first time at the rodeo - and it was my brain they were taking pictures of. I don't wear bejewelled jeans - or jeans with a million zippers & metal studs.  I  wore a sports bra - a sweatshirt - jeans - socks & tennis shoes.  In all my prior MRIs - I have been asked to remove my shoes - but never been asked to take all my clothes off.  When I questioned the technician on this, I was treated so rudely I was stunned.  I was tossed a gown & told to change.  What choice did I have - I needed to get this completed before my next appointment. I changed as 'ordered' - but refused to remove my bra & put my sweatshirt over their 'gown'.  Then while I waited - I heard the technicians talking about "the patient that refuses to change because she thinks she knows more" than they do. Ugh.

Fast forward a few weeks - and its time to meet with a neurologist to review the results & put together an action plan for going forward. My regular neurolgist is out on maternity leave - so I needed to meet with with her colleague.  I have *never* in my life experienced such a useless & disappointing medical appointment... if it was any other service - I would have asked for my money back!  The doctor came in the room - did a brief exam - told me my MRI had "countless lesions".  He asked what medication I was taking - and I told him I wasn't taking anything - because I was waiting for the new oral treatment to become available - which it was at the time of the appointment & I'd like to get started on that as soon as possible. His response - "well, you're a good candidate for that and I'm signed up to perscribe it, but I don't want a patient sitting around in my office for 6 hours for observation and that is what is required for that medication... just come back as soon as your regular doctor is back - she'll be back the first of February." With that - he left the room.  Less than 5 minutes of face time - and not once did this doctor even look me in the eye when he spoke with me.  I wanted to shout at him "Am I wasting your time? What kind of doctor are you?"

So - here I sit - and wait - for my doctor to come back from maternity leave.  Still on no meds - still in pain.  Completely disappointed that there are doctors out there that make the money they do while being completely useless to the patient sitting in front of them.