Information. Shared and Not Shared

There's a reason I see that darn Phil Mickelson ad for Enbrel everywhere I go when I'm browsing.  That one and Lumosity are dogging my virtual footsteps at website after website.  I know where they come from of course.  Over the years I have dropped many fragments of information about myself on electronic media. Some were freely given and some were not. 

                                         freakingnews.com
And all of those bits of information have made me a target for those who advertise and profile.  It's obvious from my browsing habits that I have an interest in diseases where high priced biologics are used so that accounts for Phil and the Enbrel. And advertisers are also assuming I may be starting to worry about my cognitive abilities as well. 

In the middle of a tweetchat recently I suddenly became more conscious of this situation and interpreted the feeling by thinking of Hansel and Gretel dropping breadcrumbs going through the woods. When I said this others in the chat agreed, with J. Shore saying he feels like that "Only on days that end in y".

We're all out there leaving information where it can easily be found by others and making our individual trails. Dr. Ann Becker-Schutte, a psychologist from Kansas City, gave me a different perspective in the #EOL chat when she said "But you are helping more people than yourselves find the way home."

That is a motivating factor for many people posting in online blogs and commenting about their experiences.  They are trying to use their experiences to inform and help others who have an interest in similar topics. People faced with a new health experience in particular are likely to find the experiences of others to be helpful.

For years I have been reading health related blogs written by both patients and a variety of health care professionals. They have been touching, informative, educational and all have contributed to making me healthier. I think people interested in health form one of the strongest social media communities.  When you look at the #rheum, #hcsm and #hcsmca on Twitter you find links to more resources than you will have time to digest.

So pick your favourites and dive in.

This used to be a free game that made me question my cognitive ability. I never Beat the Chimp but it's good for your brain to try some of these games. 

Fatigue and RA

Before I was diagnosed and treated for Rheumatoid Arthritis I had so much fatigue that I would come home from my part time job, lie down on the bed fully dressed and stay that way till morning.  I was so tired I could not even get up to eat dinner, much less make it.  That was when my fatigue was at its relentless worst.

                                      

After treatment started and I began to feel less fatigue it was still hard to keep ahead of it.  My strategy was to spend one day a week in bed resting to recover my strength to get through the other six days.

As I adapted I changed my job and my life, my hobbies and my socializing.

                                Stuck in a groove.  JapanPrint

Finally I settled into a groove - a livable one but not the ideal.  I had enough energy to work full time.  This was an accomplishment I was proud of but I had to go right home after work. Shopping stops or doing errands took too much energy so I did the least possible on weekday evenings.  Weekends were for resting and possibly groceries and visiting elderly relatives.

When I got home from work I would often lie down so I could get through the evening.  The image in my mind as I lay there without energy to even listen to music was of a doll lying in a dollhouse waiting for life to happen. It was profoundly unsatisfying.

                                    warmhotchocolate.com

It takes energy to think and to plan ahead.  If you don't have that you don't make the right choices, or any choices.  I did start to exercise on the advice of my helpful physiotherapist and found that I could do muscle tightening exercise with no ill effects. But when I did the clamshell exercise with a Theraband 5 to 10 times I found that my hips felt like spaghetti for 2 full days afterwords and made me weaker.  

                                   ca.shine.yahoo.com

It was at this point that I noticed in my reading the claims that biologic drugs improve the quality of life and sense of well being in RA. Because of this statement I worked on convincing my rheumatologist to prescribe a biologic for me.  

Of course this was not the only reason I wanted to add a biologic.  I wrote here about how shocked I was to find that joint damage still continued with methotrexate, even when other symptoms decreased, and I couldn't and still can't afford to have any more damage.

After four years on the biologic drug Humira I now have enough energy to exercise and not be exhausted for the two days following. It also means I can do errands even after working all day.  Small gains in a sense but they matter a lot.

                                                        scienceDirect.com

Here's an interesting look at the way inflammation and prolonged response to it can affect the body. In Consequences of the Inflamed Brain Dr Maier and Dr Watkins say "mechanisms that evolved to handle acute emergencies lead to outcomes that nature did not intend if they are engaged too long ... 
outcomes may become established, leading to cognitive impairment instead of brief memory disruption, depression instead of reduced mood, fatigue instead of inactivity, and chronic pain instead of acute pain. That is, physiology can become pathology when a set of processes designed to be relatively brief becomes prolonged."  go on to conclude that inflammatory events can lead to this process which includes fatigue.

I also believe that pain takes a lot of energy to deal with.

                                         stsiweb.org

Fatigue can be affected by our mindset and we can improve it somewhat by cognitive therapy but I strongly believe there is a large physical connection between RA and fatigue.  Having a positive mindset did not affect my ability to exercise and be more active. Taking a more effective drug combination helped my fatigue both now and at the onset.

I believe that other factors have a part to play but that the fatigue is caused by RA and that changing my attitude will only work if I am receiving the best treatment for the physical disease.

Your Brain on Pain

I have been worrying about brain power so I thought that reading blogs about the topic might help. One of them said "Ban the calculator" which lead me to think back to the year when calculators became so cheap that we gave them to people for Christmas presents. That was a big deal back in the 70s (?) and now you can get them free.

Maybe it's a sign of aging that I can now remember when commonplace items of the present were not a part of my life.

This worry about memory may be because of the "brain fog" connected to medication and illness that affects cognitive abilities.  Even mild sleeping pills can cause a decline, especially in the elderly (That starts when?).

Honestly I think that pain also has the effect of dragging down your thinking powers and your will to do things.  Before I was diagnosed with RA I has serious symptoms like fatigue, swelling, pain and weight loss but all I could think of was successfully continuing my life as it was.  That took all of the energy I had.  Even working only part time I would come home from work and fall asleep with my clothes on. So there was no energy left to help me develop ideas to solve the problem on my own or to find help for a solution.

It's amazing to me that so many people with chronic disease get past this and do so well at helping others get out of the trap. An effective treatment for your health problem is the best way to get out of this slump but that is as far away as the gold at the end of the rainbow.  Proper treatment was what finally got me on the slow train of not recovery exactly, but improvement.

Here is the link to the LifeHack post on increasing brain power
http://www.lifehack.org/articles/productivity/10-simple-ways-to-increase-your-brain-power.html
Tip #1 also sounds like a good way to have more fun, though it won't be sky diving for me. 

Really and selfishly my prime goal is to be happy and I think I finally decided that eating too much is not really making me happy.  I would like to be as happy as my old avatar looks like she was, or this baby.