The Wolf Ate My Sheep!

It has been a long time since I have checked in and was able to write for my blog. As some of you already know I was extremely excited because I was looking forward to coming to Vancouver for a four-day medically induced coma. Where I would be completely out of pain for four days while the doctors try to figure out a way to get me out of my extreme pain. Especially since my new diagnosis of Allodynia they have tried everything.

When I arrived at the hospital it was March 11th and I arrived bright-eyed and ready for anything. I had hopes of sheep bouncing in my dreams, and yes, my sheep had numbers on them like the Seely commercials!! Anyways, my hopes and dreams of having four days of pain-free sleep were shattered when mom and I realised there was a big mix up in communication between my doctors and specialists.

Nerve Pain: Is It Real Or Not?

Another quick update for those of you waiting to hear from me, sorry for the delay….

I am on the homestretch for my stay here at the hospital and I have one week left (hopefully)!!! The food has been absolutely atrocious, especially since I am gluten-free and there are no options. The highlight of my culinary choices include a popsicle and gluten-free gravy. Seriously, I am not kidding! That is what my roommate and I have been laughing at, hysterically. What am I supposed to do with the gravy? I sure hope they do not expect me to dip my popsicle in it.

There are a lot of things I will be thankful for once I go home. One of them would definitely be not being woken up at 6am for blood work every morning. Another thing I look forward to is using my own bathroom, with two-ply toilet paper. I could also use the shower in peace knowing that no one will walk in. I also would not have to worry about touching anything and getting sick from it. I don’t have to wear flip-flops on my feet and I don’t have to worry about touching the walls of the shower or the shower curtain and wonder if they have ever been clean because you can visually see the mould.

Today has been an interesting one because we tend to have a few more questions in regards to my nerve pain than we do answers with the actual diagnosis. My Neurologists are diagnosing me with small fibre neuropathy but my pain doctor is diagnosing me with severe Fibromyalgia. The issue I guess is that some doctors claim that Fibromyalgia is not a good diagnosis to have because it does not truly exist. So… if there are doctors in the world, who do not believe in Fibromyalgia as an illness, where do I fit with my diagnosis when my nerve studies prove positive for neuropathy?

I am not too sure how I will be treated now that I have an illness being placed on my chart that not everyone stands fully behind. Honestly I am not too sure how I feel about the actual diagnosis without having more information about it. I will have to look up Fibromyalgia and gather up some information about this new illness before I “Jump the Gun” and dismiss its validity. For all I know both nerve diseases can exist at the same time.

I will write more later but I just wanted to put up a quick post to let you all know I am doing ok.

Pamela

Extremely Quick Update Before Vancouver Hospitalization

I just wanted to take a moment to let you all know that I have had a very rough week but am starting to get back on my feet just in time to be hospitalized for three weeks in Vancouver. I do not know what experimental tests or procedures the doctors will be doing but I am definitely not looking forward to the added pain that comes with these tests.

I am not too sure why I am so anxious about these tests. I have undergone hundreds of procedures (not exaggerating) and have had countless surgeries. It has been bothering me so much I have been thinking about it in-between my naps, since I have been sleeping almost 20hrs a day. My body is shutting down and making me rest almost every hour and I am finding this very frustrating, but I think I have realized why I don’t want to be hospitalized – false hope.

I know that the doctors will find some new and weird illness, but it is the outcome of these conditions that is bothering me. What new treatments will I have to go for and how will it affect my quality of life? My current health status can only get worse and I can never be cured. I have had many doctors be honest with me about this and I am grateful for their honesty. Now what will happen with my new conditions? How many will they find?

I know it has been a brutal year and it has become even worse in the last few months, but I am hoping to get stronger. Hope. That is a word that can kill you sometimes. If I end up hearing that maybe they can reduce my pain a bit, hope fills me up inside. But what happens when the doctors can not help in the end, can not fulfill their promises? False hope becomes the silent killer and the reality. The last thing I need anymore of is false hope. So I just want to go to the hospital, get all the tests and procedures done, and continue on with the rest of my life believing that my quality of life can stay the same it is now and not get any worse.

The reality of the situation is that I have to hold on to the good days and cherish those. This is easier said than done. Although I have not had a good  day in a long time, I know there has to be a few out there. I pray that everyone out there holding onto Hope (about anything) have their prayers answered soon.

Pamela

Up Close and Personal With An MRI

I want to give you a heads up that this post will be educational and not very entertaining.  I promised that I would inform readers about medical tests and procedures and today’s post is about going for an MRI. My goal is to help you navigate the medical system with a little less anxiety and I hope to reduce the stress that you may be experiencing.

So what exactly is an MRI, in simple terms? It is a big, fancy, very expensive machine that looks like a tunnel. You lay on a platform/stretcher and this platform raises and places you inside the machine for your scan. If you are a Star Trek fan, think of being in a photon torpedo as it is being loaded.

Emotional Roulette

I was having trouble writing this weekend because my thoughts have been pre-occupied about my MRI coming up. That’s when I realized how many people must also be out there waiting for a medical test or diagnosis who are experiencing the same feelings as I am. Doctors do their jobs when they ask us about our physical symptoms so that they can send us for the appropriate medical tests. The problem I see is that they sometimes lack the insight or empathy when it comes to possibly the hardest thing you may have to face in your life.

So I thought, “What the heck?”, I can share with you some of the emotions I struggle with. My hope today with this post is that you can feel less alone in this world if you are facing similar experiences. None of us will have identical experiences, but most of us with have similar feelings. If you are caring for a loved one this post also might help you gather some insight as to why someone ill may be seen as “emotional” or “numb”.

The Waiting Game

Having an illness can be taxing on anyone. Having an illness that can not be cured, for me, seems to change reality in the sense time is no longer relevant. If you have passed your “terminal” window the doctors give you, it just does not seem to matter what day it is. Some days are a marvel and you are so blessed to be alive, other days not so much. With experimental treatments and technology changing so fast, who knows how long my body can hold out.

I know that the doctors told me I had secreting tumours which could not be cured but I was still shocked when the neurosurgeon (a few months back) showed me my six month regular MRI scans. He pointed out to me the new tumour tissue on the computer screen, and I actually swore in my head. They have come back again.