Pain Fog: Living in spite of Chronic Pain
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Appreciate the Life you have. Whatever it is.

8/26/2017

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Slow and Steady Progress

8/22/2017

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Invisible Illnesses.

5/18/2017

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Invisible Illneses.

5/18/2017

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Scaroidosis

5/6/2017

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I have a disease called Sarcoidosis. It was found quite by accident when doctors were investigating the spinal cord injury. I had been having chest pain from time to time and had pneumonia more than most, other than that no obvious symptoms.


"Sarcoidosis is an inflammatory disease that affects multiple organs in the body, but mostly the lungs and lymph glands. In people with sarcoidosis, abnormal masses or nodules (called granulomas) consisting of inflamed tissues form in certain organs of the body."
In my case three lobes of my lungs are permanently affected. It was actually discovered by accident years ago while I was being given every medical test under the sun for my back pain. It doesn't mean I didn't have symptoms, I did. I had occasional vague chest pain, unexplained fatigue and weakness and sometimes shortness of breath. Those are all symptoms one can live with if they have searing nerve pain coming from a spinal cord injury. I knew enough not to complicate the process by adding any other vague symptom to my already weird medical dilemma.
So there I was at emerge once again in severe pain in my side and back; after an X-ray a doctor of internal medicine is called in to see me. I thought we had found the cause of all of my pain, I was wrong. What we had stumbled upon was an autoimmune disease call sarcoidosis. At first I was hopeful thinking we had found what was causing all my symptoms. I soon learned that it was an additional concern for me. Sarcoidosis can be an acute one time occurrence or it can be chronic and from the look of the scarring they knew it might be the latter for me.
The blessing, if you can call it that, was I needed to be followed by an internal medicine doctor. Dr. Finnis became my doctor, and it was he who saw my pain, and kept referring and testing until I was diagnosed with a spinal cord injury. So he was a blessing for me. He wouldn't give up until he had a diagnoses.
As far as the sarcoidosis is concerned I still live with it today. It ebbs and flows. Dr. Finnis has since retired and I am followed by a Pulmonologist in Toronto. I've had a biopsy of my lungs and the damage is great, however my symptoms do not match the level of damage. I am fortunate. I believe the lack of focus on the disease allowed me to push though it, and I was able to say no to the strong medications that are frequently given it treat sarcoidosis. I was only able to do that because there was a much more immediate, serious medical problem I was dealing with.
Studies now show that those who take those medications are no better off then those stubborn fools like me who refused. So for that, I am grateful. This is one autoimmune disease that can be clearly diagnosed with an X-ray so if you have symptoms get the X-ray to rule it out.
There are a lot of symptoms, must of them vague, like night sweats, joint pain, fatigue, weakness, but there are also clear indicators like blood work and chest X-rays as well as catscan that can clearly diagnose this disease.


Like many autoimmune diseases there is little to be done except to manage it. Exercise, a good diet and being followed by a doctor is essential.


I have come to believe that finding scarcoidosis in my case saved me, it brought me to the doctor I needed and the diagnoses that helped stop some of my pain. That's the silver lining!


http://www.mayoclinic.org/diseases-conditions/sarcoidosis/symptoms-causes/dxc-20177970

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Month 27. Tai Chi and friends

4/3/2017

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This is the time of year when winter gets the best of me. I start to feel like a shut in and get a bit of cabin fever and sometimes depression can take hold. This year I have decided to be a little more proactive.
I have filled my calendar with an event of some kind every second day and there are social events on every weekend. There seems to be lots to do in the community this time of year I just usually don't really want to go out. In the last week I've gotten together with friends to learn how to make pasta and then had those friends over to enjoy the pasta. It was a simple gathering of friends but we had fun and learned a new skill. We played games and enjoyed two nights out.
Later in the week I went out with a group of woman to see the comedy musical Menopause and spent the whole evening laughing. That, as they say is the best medicine.
And finally, I did something I've been wanting to do for a long time. I finally got myself out to a Tai Chi class. Many years ago while recovering from my very first surgery I had joined Tai Chi on the recommendation of a dear friend and my family doctor. It was something I could still do, though not too well, but I did it. I've wanted to get back to try it, this was my perfect opportunity as it is right here in my small community.
I'll have to admit walking in there alone with all of my restrictions was a little daunting. Off I went for the second time I might add, I had tried this a few weeks ago and it had been cancelled that day. When I arrived at the venue yesterday there wasn't a car in sight. I sat there for a minute but I had some determination in me this time. I went in and asked where the Tai Chi group was, they told me it had moved down the street. So off I went again, this time a little late. Sure enough the cars were there and lots of them.
When I went in side I saw the warm up had already started. I decided just to join in. I'm so glad I did. The instructor is methodical and I was able to fake it for the most part. There will always be parts I can't achieve, as my body no longer moves normally but I didn't feel the need to explain or try to push it. It was a class of people who were my age and above, and with better body movements than me, but as my Mom would always say about being self conscious, "Whose looking at you anyway". And she's so right, everyone was caught up in their own movements. Over time they may see I have some issues but who cares, I'm off the couch and doing something, in some form. It's a beginning.
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Month 27. Acts of Kindness

4/3/2017

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Picture
What do you see in this picture? Footprints in the snow is an easy, obvious answer, but for me I see a whole lot more.
You may see the imprint in fresh snow and I see an imprint in my heart. Every time I look out my back door and see those footprints I'm reminded of how I'm loved, cared for and the kindness that has been bestowed on me by my husband once again. That's a dog walking path. A dog being walked by a guy who didn't want a dog.
You see our last dog Jiggs lived to be over fifteen years of age. She was a dearly loved Golden retriever and a part of our family since the girls we were very young. She had been "the" family pet. She was a great dog. We loved her so much, we let her hang on probably six months too long. She'd had a stroke. We thought she would die but after a couple of bad days she carried on, a bit lopsided but carried on as normal. Normal except for the fact she could no longer navigate stairs. So she couldn't be let outside on her own. Being a nearly hundred pound dog, it was left to Barry to carry her down the stairs, wait outside with her, then carry her back in. As I write this it sounds ridiculous, but at the time it seemed perfectly logical. Caring for a dying pet, or so we thought. It wasn't until my sister and her family visited that it became blatantly clear that we were hanging on to her and she was hanging on for us. So we made the decision that pet owners dread and said a fond farewell to our beloved Jiggs. It was extremely hard on all of us. Many tears were shed, our house felt so lonely and morbid.
I wanted a dog immediately. Barry did not.
He had very logical and good reasons why not. He had just gone though so much care and attention with Jiggs he wasn't ready to embrace being a pet owner again. He pointed out that in just one year we would be empty nesters, and would be free to come and go as we liked. He also reminded me that everyone in our immediate family who had housed Jiggs while we were away, had recently passed away. And finally we had a house free of dog hair and my Mr.Clean husband loved that.
He had extremely good points, well most of them anyway. I, on the other hand could hardly articulate my need for a dog. It was visceral. It was deep, and longing, I had to have a dog.
We talked, he wasn't budging and neither was I. This was unusual in our marriage, we had built our relationship on compatibility and the willingness to compromise. We had hit an impasse.
With time passing and Meghan and Jerri on my side, we eventually came to a decision that our family would have a dog again; but it would be "my" dog. Full and complete ownership. That meant: selecting, buying, training, feeding, walking, vet visits, lodging while we are away, and finally cleaning up after her. We had an agreement.
Being grateful and true to my word, I gladly did all of those things and boy did he hold me to it. That was until I became so bedridden or couch ridden, I couldn't. Three neurosurgeries later and Barry has put in a lot of time with "my" Whinnie. His will to stay detached from her gradually wore away as she made it into his heart, as he reluctantly carried out feeding, walking and generally caring for her.
He has grown to love her, thankfully she's a smart and loving dog. She knows how to give back.
So now that I'm healed from the surgeries you would think the onus is on me again. The snow and ice has kept me inside for the most part, so once again Barry is responsible for her daily romp through the woods.
She waits by the window for him to return from work and off they go into the woods.
So when I see that trail through the snow, I know I'm loved, and I know she is too.
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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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