Pain Fog: Living in spite of Chronic Pain
  • Home
  • About
  • Blog
  • Resources
    • Body Scan
    • Trial and Error
    • Relationships
    • Parenting in Pain
    • Mental Health
    • What the Doctors Don't Tell You
    • Travel
  • Contact

Month 24. Healing has Begun. 

1/6/2017

0 Comments

 
Having waited the suggested three more days before stating the antibiotics I indulged two days ago. The old trust your gut thing was right. I must have had an infection of some kind because after three doses of it, I felt better. I find it a little frustrating because I had knew the symptoms my body was displaying, and felt I needed the drug the day I went to emergency or I wouldn't have gone.
What I have to take into consideration, as everyone should, is that doctor didn't know me. She didn't know how I struggled with the decision to crawl out of my warm bed, get dressed, go out in the cold and waste most of a day to bring myself to emerge.
Had my doctor been there and seen me, I can see his surprised face now. He likely would have said, "Oh boy, what's up to get you here?"
It's not so much that I'm opposed to seeking medical help, I am not. It is just that I really have spent enough time in hospital, at doctor's offices and having tests to last me a lifetime. I hate it.
So the fact I was there didn't have much impact on the doctor I saw, but sure would have with my own doctor.
That's why building a good relationship with your primary doctor is so important. It's good for them to know who you are outside of that office, as a person and not just a patient.
What does that look like, well it's different for everyone. One thing I hear a lot of people say is my doctor knows I don't like to take medications. Well that's a given, I don't know anyone who has to take medication that says oh good that's great. That doesn't tell him or her much about you. What I'm talking about is letting them know what this disease or illness is taking you from.For example I wanted to volunteer at the hospital between Christmas and New Years, visiting those who were unfortunate to have to stay there over Christmas. I thought Whinnie and I would be at the hospital doing that and not at ER. Perhaps you have had to put off a visit or stop a part time job etc. Let them know what your life looks like.
It's easy to not do things that are not that important to you or unpleasant, but not being able to spend time with grandchildren or friends has an impact on you and the opinion your doctor has of you as well. Saying you missed a significant event says a lot about how you feel.
So don't just go I to the office with a list of complaints; remember to sprinkle in a little bit of your life at every visit, so that there is a real person attached to that visit and not just a patient.
I've had a long relationship with my doctor and it has been confirmed time and time again when we agree on fundamental things, but this Christmas it was confirmed in a different way.
I had been reading Rachel Naomi Remen's book, My Grandfather's Blessings, as I read I often thought of Dr. Shaw. I decided to buy the book for him because it was so much like him, I thought. My thoughts were confirmed when he sent me a thank you note saying he had read her first book and loved it, and looked forward to reading this one and passing it on.
Know yourself, know your doctor, and even the most complicated medical history becomes easier.
Happy New Year friends. Be healthy in your mine if not in your body, and be the best you can be each day as it comes.
0 Comments

Month 24. The Best Laid Plans. 

1/6/2017

0 Comments

 
Being sick sucks, being sick at Christmas is especially hard; but when it keeps going right on through to the New Year's Eve celebrations, well that is just wrong. That was me this year. I don't usually get a cold so I was suspicious when about the 22nd I felt quite congested. For s period of time I had been getting pneumonia with some frequency so I agreed to a pneumonia vaccine. I haven't had it since, yet this feeling was more familiar than I initially let on.
I made my way through the festivities with frequent naps and pyjama days. I kept thinking I'll feel better tomorrow.
As New Years approached I was feeling worse and with some great plans in place for New Years Eve I was determined to get myself well enough to attend.
You're probably asking yourself why I didn't see a doctor sooner. Well the short answer is my doctor is on holidays until the 12th. Going to a clinic for me is a long confusing process. My medical history is complicated and comes into play each time I visit a doctor for the simplest things; and it is never simple, so I avoid it.
I woke up from what little sleep I did have on the 29th and decided not only did I need to see a doctor, I needed an X-ray of my lungs so I headed to emergency. And when I said the simple can be complicated what happens next is a good indicator of that.
At triage I'm asked what my symptoms are. They are, I'm congested, runny nose, phlegm, and discomfort in my chest. I'm asked if I have a fever, I tell them no because I have a spinal cord injury and since that time my body does not produce a fever. I'm asked to explain that again and four questions later I'm asked did I take my temperature in the last 24 hours. I answer no; I do not get a temperature so I do not take it. I am then asked if I have taken anything for a temperature.
At that moment I haven't even seen a medical person and I want to walk out the door. I'm so sick, exhausted and I have literally no patience to deal with this. I'm asked to explain the congestion in the chest and within minutes I'm on an EKG machine despite me telling them I have a lung disease which can cause me to feel this way.
I have an irregular EKG, I'm put immediately into a bed and hooked up to a heart monitor. So it begins.
I'm asked to leave the EKG leads on my body because they may want to redo it after blood work. I refuse. There was a time I'd cooperate despite the damage it does to my sensitive skin but I'm in survival mode now and I will not allow my skin to become raised and irritated for the convenience of two minutes to replace them when and if they are needed. I'm kind to the technician and explain how sensitive my skin has become and she sees it herself as some of the leads are taking bits of skin off as she removes them. One battle won.
My nurse, a humorous if not nurturing soul, sets me up and offers to go find Barry and bring him in to commiserate with me.
Finally I see the doctor and she asks how long I have had the cough and fever. I have neither I tell her, she looks at her notes and shakes her head. Off to a great start. She explains they will wait for blood work to return to rule out heart issues then send me for an X-ray. I caution her that they will see spots on three lobes of my lungs as I have a lung disease called sarcoidosis.
Off I go to X-ray and return. Within a short time of being hooked up to monitors it is clear my blood pressure is rising fast. Barry and I discussed it and decided to wait for a number then try to explain autonomic disreflexia to my nurse and doctor. The number hit and we spoke to our nurse. Surprisingly he did not downplay it or ask us to wait. He asked how it is usually treated and went off to find the doctor who immediately prescribed the appropriate medication. That's a first. I'm usually told I'm anxious and that's what is causing my high blood pressure. Etc etc. I've been lying almost asleep and told my anxiety was causing it so this reaction was so refreshing. My doctor has been doing his part to educate staff on this rare condition and I think it has worked. He will be pleased.
My X-ray came back and the radiologist suggested a catscan because there was so much scarring on my lungs it was difficult to see wether I had pneumonia or not.
The doctor gave me the choice and it's one I don't take lightly. I've been told a catscan is 100 times the radiation of an X-ray. Her argument was a good one and she added that it had been a very long time since I had my lungs scanned and with a chronic disease it was good to do that from time to time. I agreed since I'm seeing a pulmonary specialist this month and a catscan would be helpful.
Off I went to catscan and having had many in the past I answered the questionnaire confidently and assured them I hadn't ever had a reaction to the contrast. Immediately upon the contrast entering my body I started sneezing ten to twelve times in a row. I wasn't concerned but they sure were. It was a medical emergency!! The room filled with three techs and a doctor who quickly sat me up and examined me. I assured them I felt fine and once examined and no hives were found everyone rested a little easier. I later learned you can arrest for a reaction so I see why now they reacted the way they did.
The catscan showed a progression of the disease but not pneumonia or blockages. Good news of course, but what now. My doctor was determined not to prescribe an antibiotic because the correct number of days had not been passed will an illness. She painstakingly explained that medicine has change and antibiotics are not given out very freely anymore.
While I agree in theory, I didn't make much since for her to ask me to wait three more days and come back and I respectfully said so. I said with a comprised immune system that I really don't want to visit emergency or a clinic full of sick people. Coming back to tax the health care system with me unusualness once again doesn't make sense either.
Long story short, she questioned wether I had some strain of flu, or a sinus infection. She ordered a steroid spray for my sinus, a rinse and a puffer, finally she agreed to give me a prescription for the antibiotics in case in three days I am not better. Phew!!!
Twelve hundred words to tell you I have possibly a sinus infection that has irritated my sarcoidosis. That's why I love my doctor and hate when he takes holidays.
0 Comments

Month 24. Different shapes and sizes of adversity. 

1/1/2017

0 Comments

 
I have always known that what doesn't kill ya makes you stronger; I heard it my entire life. I do know also that what we perceive as being the worst situation never really is.
This year, I was as you may just have read, in a very good position for a seamless Christmas. I had gotten so much of my strength back and had planned my shopping, baking and organizing of Christmas in such a way that I wasn't depleted. I was in fact so looking forward to decorating and have family and friends close. We had a wonderful dinner party on Saturday night and I cooked a pork roast to perfection(which you will see is relevant).
On Sunday we drove to the airport to pick up Meghan and the bus station to get her boyfriend Travis. Off the four of us went to the party that always helps kick of our holiday season.
On Monday they pulled out the snowshoes and enjoyed the freshly fallen snow then came back to the house to decorate cookies and enjoy hot chocolate. Tuesday we finished baking and prepared for friends for dinner. That afternoon I noticed the dyer was not working, an inconvenience this time of the year for sure, but I wasn't going to let it bother me.
Our friends arrived and with eight of us gathered we finished the last minute touches on our pizzas and preheated the oven. Within minutes I knew we had a problem. The oven wouldn't heat up past 160degrees. With eight hungry souls we fussed and fooled with it until someone suggested the BBQ. So on December 23rd we barbecued our pizzas. Challenging, and a little stressful but it worked.
I called our appliance repair guy the first thing the next morning only to be told he wasn't likely to get out to look at it before Christmas; and even if he did we wouldn't have the parts. It's a three year old stove. My dryer is about five. Frustrating at the best of times but with a turkey and a birthday cake to bake for Christmas Day, this was not welcome news.
I felt disappointment but I wouldn't allow myself to be stressed about it. There wasn't a thing I could do. We talked about the turkey and what we should do, and thought perhaps we could use the BBQ once again. Of course we assumed every oven around would have a turkey in it. The cake was another concern. Not being a lover of sweets Jerri had requested a German apple cake I had made for her in the past. For that, I needed an oven. I asked our dear neighbours if they would mind if we used theirs. When they heard our story they offered the oven for Christmas Day as they would be at his Dad's. The cake got baked there and we were getting set for Jerri's arrival.
I came down with a very heavy cold. I have not had a cold in years and was feeling miserable.
I was more determined than ever to not let the various things get to me but I was being beaten down. With a constant headache and blocked sinus I continued. On Christmas Eve we prepared for our most special evening of fondue with friends. Barry went out to get me sinus medication and I had a nap to help get me though. I woke feeling better and throughly enjoyed the night.
Christmas morning our two grown twenty somethings were in our bed at 6.45am!
I was so stuffed up and congested that my enthusiasm did not anywhere match theirs, but we got up and grabbed a coffee to carry on. We did have a wonderful morning with our traditional sticky buns, coffee and presents.
Then onto the challenge of the turkey. Once prepared and stuffed we took the short walk next door to roast it, while I once again napped. Meghan and Barry prepared the table and I got up to finish the veggies and jiggs dinner. Jerri arrived back from Shayns and we started the second half of our day. As we were preparing the last of the trimmings a burner got accidentally turned on under a casserole of stuffing. Just as I realized what had happened the whole thing exploded into a million pieces. Both Jerri and I got hit with some of the glass and I wasn't injured at all Jerri's feet had small fine cuts but all in all it could have been a lot worse.
It was a beautiful dinner and Shayn joined us for the evening. We were finished the birthday celebrations and playing a game. I felt we had definitely had made the most of some challenging situations when I got some sad news.
Earlier on Christmas Day a family friend in Newfoundland had died of a heart attack. It was shocking and so very sad, I can't imagine how his wife and family feels.
0 Comments

Month 24. Expectations. 

1/1/2017

0 Comments

 
Expectations are a trigger for so many of us. I think all of us at one time or another have not lived up to someone's expectations of us; and have had someone not live up to ours. Both can be extremely painful and even life altering at times. Yet some of the expectations we place on ourselves can be the worst culprit at times, and we less forgiving than anyone.
I'm reminded of this at this time of the year because it is a season so full of expectations.It is supposed to be the season of giving, yet we look into many vacant, tired eyes and people walk around like zombies going from one thing to the next.
I have both lowered and raised my expectations this year. I have decided what will be, will be. I can do what I can and those that help can help to the best of their ability and not to the standard I usually set. Let's face it, when we ask someone to do something for us it is to do it the way we want it done.
I have raised expectations in that I am feeling so much better that I can be more present and involved and have things the way I want them without as much stress. But that didn't come easy. It has been a hard fought battle, one with myself. I'm the type of person who like to start and finish something in one session, no matter how I'm feeling. That has left me strained, stressed and in pain in the past. I know it, but I have done it to myself time and time again. And I know all of you have done so as well. It's how most of us are hard wired. So I've retired my thinking and therefore my actions this year are more reasonable.
It started with Christmas baking which I began in early November. It consisted of gathering the ingredients one day. Making the dough the next then refrigerating it until I was ready to bake the cookies. It worked! The world didn't come to an end and when Meghan arrived there was a bunch of great cookies to eat and then lots to decorate and give away. I felt good about having things somewhat the way I wanted them and I wasn't spent trying to get it that way.
I did the same with shopping. If I was having a good day I shopped for a set period of time and came home to rest. In previous years I would go out shop, come home and wrap it all up and take on another project. I was setting myself up to fail. I have to say the easiest and most shopping was done online this year. I had help with the wrapping and it went very smoothly.
That's just some examples, but there were many and I have to say I have experienced way less pain this year than in previous years at this time. So lowering expectations of others is key but not until you have raised expectations of yourself to do what is best for you!
0 Comments
    Picture

    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.

    About

    Archives

    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015

    Categories

    All
    Bad News
    Chronic Pain
    Crisis
    Daily Life
    Depression
    Doctors Appointments
    Family
    Fear
    Focus
    Friends
    Frustration
    Goals
    Help
    Insomnia
    Laugh
    Learning
    Leg Pain
    Meditation
    Memory
    Mindfulness
    Nap
    Neurosurgery
    Pain
    Pain Management
    Planning
    Preparing For Surgery
    Rehabilitation
    Risk
    Serenity
    Service
    Sleep
    Stress
    Strong
    Support
    Surgeon Appointments
    Surgery
    Toronto Western Hospital
    Travel
    Waiting

    RSS Feed

Powered by Create your own unique website with customizable templates.