Thursday, May 30, 2013

Poster Child

"You are the poster child of all the bad symptoms of Chronic Fatigue"
Those were the words that came from the mouth of my specialist this morning after I updated him on how I was doing and told him about my new symptoms.  I didn't quite know what to think when he first told me that.  Was I supposed to be happy that at least all my symptoms are confirming that yes I have CFS?  Was I to be discouraged that I was dealing with so many of the horrible symptoms?  Was I to laugh off the idea of me being a 'poster child' (I know he didn't mean it literally but still!)?
I don't know. And honestly I still feel all those things. 
Yes it is great to know that my increase in hot flashes, cold sweats, numbing pain, muscle spasms, joint pain, headaches, and ice cold feet are "classic" with CFS.  Although he did say that my pain is beginning to sound like Fibromyalgia is getting thrown into the mix too - but that is also "classic" with CFS.
I know I definitely do not have anywhere near the worst case of CFS either, but it is rather frustrating knowing I seem to be experiencing the majority of the symptoms.  
But although frustrating, it still somehow calms my mind knowing that I am a poster child.  That I am not experiencing weird symptoms that do not seem to fit the story.  That despite all the tests, they haven't missed something ominous.  
That indeed I am someone with CFS. 
Someone with an illness that little is known about but someone who is also fortunate enough to have a doctor who knows much more than many do about it.  He is encouraging and today, despite my new symptoms, strongly feels I am getting better and will fully recover!
As we left his office with a prescription in hand and odd image in our minds of me being a poster child, my mom and I were comforted in our hearts.  
I am being cared for by one of the best and he believes I will recover.  He believes in me. 

I also believe that maybe, just maybe, we may have found another key to helping my body
heal.  Acupuncture was very interesting yesterday evening.  The Chinese Medicine Doctor I saw was oh so kind and spent nearly two hours with me finding out about my history, asking what I thought, how I felt through all of this, explaining what she was going to do and how she hoped to help, and actually giving me acupuncture and some fun 'ear blocks' (radish seeds that are taped on pressure spots on my ear - see photo).  
After the treatment I seemed to be more energized and seemed more like me - my mom said the colour in my face was back to my normal, something she hadn't seen this whole time I have been sick.  9:00, my bed time, came so quickly.  I couldn't believe it. It didn't seem to help with my other symptoms, but the focus of her treatment was to increase my hormones, combat the fatigue, and help with the dizziness.  
It is hard to tell from just one treatment and I don't want to get my hopes up, but I really think we may finally be on to something!
Today I am quite fatigued and battling aching body pain and a lot of sweats but I am hopeful.  I also managed to slowly make my way up to see my specialist at St Paul's Hospital without a wheel chair (I used my chair on the way down as I was quite tired from walking up and having the appointment but I am still very happy with my accomplishment!). 

So this evening as I sit in bed, I am grateful.  
I am grateful for all the wonderful health care providers who care about me and want to see me well.
I am grateful that I can be a poster child for this illness in some sort of way through this blog.  That I can share about the hidden illness that is estimated to be affecting 50,000 undiagnosed patients in British Columbia alone. Yes, you read that right. 50,000 undiagnosed people are living with some degree of CFS and have no idea what is wrong with them. Why no one can seem to figure it out.  
I am blessed that I am not like one if my specialist's patients who saw 20 other doctors before seeing my specialist and finally getting a diagnosis.  (And by the way, my specialist is the one who told me the quote of 50,000 that he was told by the doctor at the new Chronic Illness clinic at BC Women's Hospital). 
I am grateful that I have the strength to be able to share my story with you. It is such a blessing to be able to write again and tell you about the things God has been teaching me through this rough time of my life.  I am beyond humbled and blown away that you would care to listen to a piece of my story - be a piece of my healing. 

So thank you.  I am beyond blessed. 

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