Now I have mentioned the benefits of using a medical diary before. The importance of keeping track of medicines, activities, diet, even environment (weather, stress, excitement, etc...).
Right now I am in a state of 'unknown'. All I know is exactly how I am feeling. And even then, sometimes I may forget. Managing my health is a complete balancing act.
I write down what happens at each appointment, I write down any strange or new symptoms, new pains, any improvements, and I try to note what was happening during those times. I have to give myself visual or auditory cues of when I have taken my medications so that I don't double up or forget to take them.
And trust me - every single medication tampers with one's ability to function intellectually.
Every one of my doctors right now is stumped. We do NOT know why I am worse. And although I have felt stronger over the past few days, as of today I have taken another step in the opposite direction... Again...
This is where my medical diary is crucial. I need to go over every single detail of the last few days. And, because I have done this before, there aren't that many variables that are different.
Now, as I said, the only information that I have to go on is my medical diary and the precise changes in how I am feeling. BUT - since I have removed as many variables as I could - now I have a select set of questions that I can ask my doctor when I see him next.
Further to that - although feeling like a guinea pig doesn't exactly promote confidence, I can also make some educated decisions on how to proceed.
For instance - I am on constant antibiotics. I do two week cycles of each and alternate between two. This has been the way for several years. IF I think that there is a problem with one of them, I change the cycle in a controlled and safe manner. CONTROL THE VARIABLES.
When do I feel different symptoms in conjunction with these medication changes?
Now the key here is to keep all possible external variables the same. That's pretty tough in this world, but if you run the 'experiment' for a long enough stretch of time, then, if it is a medication causing a problem, it won't matter what any other external variable is. I will still get the same adverse symptoms.
Would I suggest doing this? Absolutely not. It is safer and much more prudent to do this under the direct supervision of a doctor.
Unfortunately, because the complexity of my case and the nature of my illnesses, I don't have that luxury on Good Friday.
Currently working on removing variables and keeping track of every move I make. Maybe then I can ask the right questions and we can investigate further.
I am sick of being in limbo. Let's figure this out!