Pain Fog: Living in spite of Chronic Pain
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Day 30. Proving Pain, While Staying Positive. 

3/24/2015

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Researchers have yet to find a way to prove the intensity of someone's pain. Yet we, as patients, are asked on many occasions to do just that. Prove that the pain we are feeling is real and debilitating.

In their paper Proving the Existence of Chronic Pain doctors, Steven G. Yeomans and Jeffrey E. Fitzthum state, "Proving the existence of chronic pain is a challenging task, given the wide variety of patients who present clinically with chronic pain, the large volume of medical literature, and the controversies among professionals. The more that is learned about chronic pain, the more the controversy seems to intensify".

Professionals can't prove it -- yet patients are asked on a regular basis to prove their pain. What is wrong with this picture?

Two of my readers have talked to me this week about the frustration with this. One is being visited by a rehab specialist this week to see if there is "anything" she can do to become employable again. It has been months, she has been seen by two medical doctors, a naturopath, a chiropractor and a rheumatologist and has attended an extensive program for pain management. In each case, nobody suggested she go out and find work, they have agreed at this time she is unable to carry out duties of her job. We go through all of this and mountains of paper work all while being the most vulnerable of our lives. On top of that we are visited by people whose only agenda is to get the insurance company's piece of proof that you can indeed work again.

Another reader has been off work for two years, and has done everything in her power to get back to a job she loved. She has had a very difficult time accepting that this is how her career ends. She too has been to countless medical doctors, physiotherapists, osteopaths, naturopaths, the top pain management doctor in Canada and attended not one, but two pain management programs. She too was visited by the insurance company's representatives to access her abilities, and will be examined by an independent doctor.

I'm not saying that we all deserve to leave work and be paid just because we say we have pain. What I am saying is, nobody knows what a person in this situation goes through. It is difficult enough to accept that you cannot work and are forced to retire, then there are constant threats of losing your financial independence.

All of this happens at a time when you have been off for a while and reality is sinking in that you may never work again. Along with that comes the realization that there are many things in life you may never do again. It is a complicated thought process, which requires time. In the middle of that you probably have a doctor who is not really understanding or too rushed to help you with those feelings, and family who are also mourning the loss of who you were.

For some, depression is a part of chronic pain. According to Harvard Medical School's 2009 Harvard Health Publication, "Some studies suggest that if physicians tested all pain patients for depression, they might discover 60% of currently undetected depression."

That same article suggests, "Pain specialists can improve their practice by learning more about the interactions among psychological, neurological, and hormonal influences that link pain and depression."

It is hard to stand up for yourself when you are dealing with all of those feelings and depressed too. It is easy to give up and not fill out paper work, not answer necessary phone calls, not be a part of your own advocating. It feels a little like kicking someone when they are down.

Canada's public disability insurance, CPP, had an applicant success rate of "43 per cent in 2013-14. Indeed, Canada has one of the highest rejection rates for a disability insurance program among OECD countries." According to Michael Prince who contributed an article to The Globe and Mail on the topic.

So if our own national disability insurance has a rate of only 43%, what then, is the success rate of a private insurance company? I couldn't find any stats on that but you can bet it is not any higher.

The onus is on us to prove what scientists have not been able to prove for years. We are in pain, and we are not able to carry out the duties required to do the job.

There is such a dichotomy here. Everyone tells you to move on, do your best, don't focus on what you can't do, be positive; but if you need the employee insurance plan, you are reminded of what you can't do constantly, and have to prove it.

In a sense, I was lucky. Or at least that's how I choose to look at it. I wasn't working when I got my diagnosis so there was no fighting with my employer's insurance company. It also meant I was left with only CPP which is a pittance compared to what I could have gotten. I left work by quitting, thinking I would go back to work when things settled down. It was a year later when I was diagnosed with a spinal cord injury. To be honest, it was very difficult for me to be without a salary, it added to the feelings of helplessness. I don't think I could have handled dealing with an insurance company on top of everything else. I had a family to raise and a debilitating injury to deal with, and a flurry of doctors and appointments. My hands were full.

To those of you who are dealing with all of that and the insurance company investigation -- I applaud you for your strength, and I encourage you do follow some of these steps.

1. Keep track of doctors appointments, where, when and why,

2. Have a list of prescriptions written out, and photocopied,

3. Keep a point form list of series of events,

4. Have symptoms written in point form,

5. Have a list of what you have given up on a personal level because of pain or illness,

6. List the things you have tried outside of traditional medicine,

7. Have you had to hire help, etc shovelling, cooking, cleaning, if so list it,

8. Keep your lists up to date,

9. Keep your lists out of site and out of mind,

10. Live for today. Don't think about yesterday or worry about tomorrow, see what today will bring.

The reason for all the lists are so you can free your mind and not dwell on those negative things. It is best to be as detached as possible to that. It just is. So in writing it, you have put it aside and pull it out and hand it to those who need it. You don't have to spend the day before an appointment reliving all that negative stuff. It won't make the fact that you have to meet with these people and answer their questions any easier. What is does is make it happen on the day it is happening; not weeks of worrying about it before, and wondering after the fact if you remembered everything.

You are still the same person inside, no matter how damaged your body has become, the essence of you is still there, hang on to it.
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Day 16. Hospital Day. 

3/11/2015

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Today started in an omg kind of way. I had an appointment at the hospital for physiotherapy one hour before I was scheduled to do a half shift of Pet therapy - at the same hospital.

Let me back up a bit. If you have been reading along, you know I have been having poor concentration because of lack of sleep. I would have never scheduled both on the same day, let alone within an hour of each other.

I haven't done a pet therapy shift in a couple of weeks and really wanted to get back to it, as I know I will be missing it so much after my surgery. The accommodation they made for me to be able to go was so kind. Someone set up for me, I didn't have to walk far, and Mary agreed to take half of the shift so it wasn't too long for me. I was all set. That is until I made the Physio appointment for right before. It didn't leave me enough time in between to go home and get the dog. With a clear head I would have spotted this problem and fix it while there was still time, but blinded by lack of sleep and pain, I now had a dilemma. Once again I am thankful for Jerri. Her young brain put it together for me. She would take me to Physio, bring the dog, and while I was at Physio she walked Whinnie and brought her back just in time for her pet therapy stint. It was fantastic shift that was very busy with a diverse group of doctors, nurses, patients and visitors. Whinnie and I loved being on duty again and it was honestly great to get out of the house and feel the sun shine on me.

I was able to do something I love because of the selfless acts of kindness from others. Thank you Mary for accommodating me and taking a half shift and thank you Jerri for driving me all over. Both of you make it look easy when I know it would have just been easier on everyone, if I had just stayed home. But because you did that for me I was able to be there today to allow many the comfort of Whinnie. Not to mention the sense of purpose and infusion of positivity it brings to my life.
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Day 11. Waiting or just being?

3/6/2015

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Waiting. Waiting is a killer. I hate to wait because I love to plan. I like to know what's up for the next few months. I don't like it when our family plans are on hold because we don't know when my surgery will be, other than likely April.

There are a number of things coming up in the next few months that I would love to be able to plan to attend. My mother's apartment will be cleaned out during the next month and I would dearly love to be there for that. I know for sure that won't happen, as I know that will be too much for me at this time.

I can see the family doing this with the memories that surround it and it pains me not to be there.

Our dear friend's daughter who we are close to, is getting married. It is sure to be a grand affair with a ton of sentiment and loveliness. I want to say of course we will be there, how could we not. Unfortunately I'm unsure. I may actually be in Toronto where the wedding is taking place but in a hospital or rehab centre. If that's the case at least my family can attend. Or if not too much of an intrusion, I will in the condition I am in.

Finally, and most complicated is my brother is getting married in a small ceremony in Newfoundland in July. I can see myself there, I can feel us being a part of all of the festivities however we cannot plan on it. We could buy tickets and get insurance, however it is a preexisting condition therefore no insurance company will refund the money if we cannot make it. Having a ticket right now may put as much pressure on me as not having one, so I might as well save the money. It doesn't feel very good knowing my entire family will be there and I likely won't be.

These events are all important to me and not just something I would "like" to do. I have tried to attach the mindfulness attitude to the situation and remember it just is. How can I ask why, there is no answer for that. It just is.

So I will change waiting, to just being.
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    Maureen Clout

    I'm going in for a 4th neurosurgery; this time it's a repair to my lumbar fusion. Here, I will post my daily updates on dealing with diagnosis, surgery and recovery. Join me on my journey.

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