The waiting game

Reading comments and posts from others who suffer with chronic illnesses, a lot of them rare or minimally researched, has me thinking that this is a waiting game.

I have waited for a doctor to have an opening for an appointment
I have waited in traffic while trying to get to doctors who are not necessarily in my area, but who I must go see because maybe they can help
I have waited for tests to be completed or scans to be done
I have waited for the results of the test The worst of the waiting.... waiting for the pain to hit you like a ton of bricks because someone accidentally brushed against your face, or the wind somehow blew through a crack in a window, or or or.....
Yes we wait and wait for help, for support, for answers.

 The problem with this waiting game is, we are often waiting for nothing. Seriously, if you take your car to a mechanic and wait for him to be done with it, you expect to collect your car with whatever it was you sent it in for - fixed. BUT, in this day and age of medical advances, technology, information galore.....AND a specialist having gone through a number of years of training, we wait and get no answers. After a year of trying to find answers with a number of specialists (this after years of intermittent pain), I was eventually told, "Sorry, we don't know what to do". I didn't accept that. I demanded to be referred to another doctor in another area based on research that I had done while waiting for answers.

So I went to the new doctor, more waiting for tests, then waiting for medical aid to be renewed for the new year so that I could have even more expensive tests and more expensive medication.... what happened? I waited in vain for the medication to work. This isn't all doom and gloom though, that doctor didn't give up, he said " Sorry, I can't help you but I will find someone who can." Now, that is worth waiting for. So I waited to see the new doctors who believe they can help and after a lot of back and forth between different specialists who now all want to be involved with my case because it is "interesting", and more waiting for medical aid to approve procedures, I am waiting for the next 12 hours to pass before I go into theatre. I know it will be a waiting game for biopsy results from the removal of the " growth" which they thought was fibrous dysplasia, and I will have to wait to see if they can temporarily numb the nerves and then wait to see if it has some effect.

 I will post a bit more about the actual procedure afterwards, right now though, I'm waiting for a call from the hospital. There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

No frills, no fuss, no energy....

I usually have the ability to be creative with my posts and titles. I am and have always been able to think of creative themes, or at least I think so, to describe something.
Right now though, I am tired, so incredibly tired. I can't seem to get myself to put one foot in front of the other for a while now. It is like I am walking in fog and it's not even because of medication.

Something that is very difficult for people to understand about chronic pain is the exhaustion that comes with it. To have colleagues and acquaintances equate my exhaustion and struggle to cope with their normal back-to-work adjustment period almost feels like an insult. I was on leave from work, yes, I haven't been able to work a full day since being back, and yet their seems to be little to no understanding in practice though seemingly sincere concern and support are at hand and verbally expressed.

I am almost sure that I'm not even making any sense in what I'm saying anymore. I am tired but can't sleep since laying down increases my pain. The medication has literally stopped making ANY difference. As much as I want to be positive and have faith, as everyone continues to encourage me to to do, it is much harder on this end of that encouragement than people realise. When every conscious waking hour is filled with pain, every semi-conscious minute results in restlessness and (hardest of all for me), every minute I try to function as normal human being results in hours of agony - having faith and being positive is the last thing on my mind.

It hurts. Emotionally. Physically. Spiritually. It hurts. There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader