Picture taken by: April Law

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Again it’s been a few weeks since my last post. So much is happening but so little, if that makes any sense at all. I’m really learning about perceptions and how much that really affects our daily lives. One being I can wake up one morning and look at myself in the mirror and see nothing but disgust and question every once of worthiness to be in this world and the next day I can wake up and look in the mirror and see such progress, such love and understanding for everything that I’ve been through. I’ve learnt that over the years I have been focusing and attracted to my physical body’s looks. How in shape I am what that looks like in the mirror to me. When I discovered I lost all of that I was stuck with a mind that wasn’t very encouraging but so judgemental. You don’t know the depths until your in it until you find yourself laying in a bed dependant on others and living a life you never approved of. I am a worker bee, I only saw the importance of being in shape and even at those best moments they still were never good enough. The physical pain of my body has kept my mind so busy not only now but I’m discovering my whole entire life living with back pain. Pain can be all encompassing. I remember specifically asking for guidance and help to get rid of pain in my physical body not really realizing what that really meant. I’d have to face so many other things that I never did before. When my pain is controlled I have anxiety I don’t know what to do with myself. The thoughts keep coming in and it seems they have been forgotten or not given any attention. These days can be so hard, I know what I want but the reality is what do I really need. I need nurturing but I’ve always been so scared of it. Nurturing means I have to let people in. In my mind that means they have the opportunity to take advantage of me, mentally, physically, spiritually. It means I would have to trust. So in this process I’ve had to fight tooth and nail through those dark clouds, those perceptions that have been tainted. We all have them, but are we willing to stand in that moment of silence and really listen to what is happening in our lives. Are we too busy, I know I was, I never had time for anything although I did it all. Over these past few weeks I’ve learnt to reach out and ask for help in my really dark moments where I don’t trust myself and I do need clarity. I can now understand why people go there why it seems so dark and why life seems hopeless. This week I went to emergency to seek help, I wanted to be seen by a neurosurgeon on call because I was desperate. I got denied and sent away within an hour. The doctor did not lay one hand on me to assess only to shake my hand. He stood at the doorway and asked me questions and then made assumptions from there. I was pleading, crying and desperate for him to just listen and an once of hope that he would call the neurosurgeon on call but no I was shamelessly put into the same category as the frequent flyers that are looking for drug relief. All I want is to get off these meds, move on with my life and get back to living because this is definitely not living. His famous words were “you need to find your new normal “. I do understand I will not return to what I was but this life can’t be considered my new normal. This isn’t living. Thank goodness for my family doctor who knows me so very well. I’m not a drug seeker, I’m a problem solver and this one needs to take action. So as I sit here waiting for what happens next I get to clean out my mental closet. I get to see and feel through every situation and emotion that arises giving myself the opportunity to grow. The beauty of all this as I look outside and see what my perception holds that day I get to see many different versions of the story and picture. For me I’ve set up a plan for those days where I can’t see beyond my two front feet and embraced trust that I will keep moving forward. Much love Nicole xoxo

4 Comments »

  1. Working with patients who suffer from chronic pain helps me to relate with your struggles, though I would not pretend to know how it feels or understand as one who experiences it firsthand. I do understand how providers get short with patients who seem to want treatment that the provider feels is not warranted. I also know how frustrating it is to speak to a provider who doesn’t listen, much less show any sense of compassion.

    While I don’t have any magical cures or instant solutions (though I wish for your sake someone did), I suggest possibly going through your family doctor to get a referral to the neurologist or to a spine specialist. It takes time but you are probably more likely to get a referral than the ER or urgent care doc who is used to turning beds as quickly as possible to handle the next emergency.

    I’m sure you are well versed by now on medications and various other medical therapies that may help. But in the meantime, may I suggest you take up painting? In art, you can express emotion, yet it takes patience with yourself to develop skills in both mixing colors and creating shapes, textures, portraying light, etc. I suggest painting as it is low cost of entry, does not require lessons (but lessons are often available) and does not require a great deal of skill or physical effort to produce both a pleasurable experience and product for the artist. After all, you paint first and foremost for yourself. I know of those with disabilities that paint holding the brush with their teeth or feet, even. Painting may even help you work through some of your anxiety by expressing your fears and realizing you can paint a new reality over top of those fears. As you develop your craft, you can reward your caregivers with expressions of whimsy and handpainted gifts of appreciation, which may help you with feelings such as despair or insufficiency. Best wishes to you as you endure the challenges associated with significant injury. Hopefully your journey to recovery is shorter than longer.

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    • Painting is a wonderful idea!!!! I wish the referral process utilizing my family doctor was that easy. It’s been done a few times now. My biggest problem is my neurologist went on holidays for the entire summer leaving me to wait until September 19 to see him. My surgery was done as an emergency due to Cauda Equina. I still have severe weakness to my right leg and spontaneous urinary incontinence. I was told to go back to emergency if this happens and it has so that’s why I landed in emergency. The ER doc actually lied to me saying there was no mention on the OR note of Cauda Equina and I know there is because I have the OR note :(. It’s just so sad when people don’t take the time to listen. I’ve been a nurse for over 24 years and that was my 3rd time going through emergency in all my life. I am not a frequent flyer. Anyways I know there are so many lessons in this and I do respect that. It’s just frustrating at times when you know the system from a medical perspective and I wish I could change it. Being on the other side has been a real eye opener. Thanks for always listening, always giving suggestions and I look forward to hearing what you have to say. I will get through this too 😉

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  2. I certainly hope you find healing. Cauda Equina is certainly a huge ordeal to endure on par with many other major life changing illnesses or injuries. Sorry to hear of the delays in your care. Hopefully your body will be able to heal and both the pain and other effects will resolve. As a possible last resort, I do have a friend who has a mitrofanoff due to weak bladder, and seems to do well with that. There are catheter kits that are small and easily carried in a purse. Again, may or may not be an option, but definitely a last resort Best wishes!

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