Sunday, August 14, 2011

Becoming an Expert

I may not be an expert in anything else but I am definitely an expert on S, his meds, and his condition. I have to be. He can't always make the best decisions for himself and he needs someone to advocate for him and keep everything straight. 

I know how his  medications interact better than his doctors or the pharmacists do. i know that one of his meds metabolizes in his liver, which cuts the effectiveness of all his other meds in half. I have often said "no, you can't give him x med because he will get sick/ have a reaction/ get depressed/ become manic." Every doctor has looked at me like I was crazy the first time I said that, but I back my information up with hard data and exact dates and times that it has happened.

I also know what exercise will do to his mood. How much he can take before having to give up. What his mood is on a day to day and moment to moment basis. And I am learning how to encourage him while also making sure he doesn't over do it. (This last one I'm not so good at yet.  I have the theory down, but I'm still learning to put it in practice.)

There are some times when S is in so much pain and/or is so depressed, that he is not sure what meds he is taking. Even the ones he has been on for years. Oh, he knows the names, but ask him the dosage or even when he took the last dose and he'll give you a blank stare or an embarrassed laugh. He has loud alarms set up on his phone and I double check with him every time. I also have the exact dosages written down on my phone. 

He also tends to understate how much pain he is in (especially with friends and family) and I have to sometimes be the "bitch" and tell him to slow down. I have talked to his brother and family about how to help him, because he refuses to do it himself. I have also said "yes, he said his pain is a 3, but he understates things, I truly believe it is more of a 6 or 7".

I believe everyone who has a loved one with a disability should become an expert on that person. Ask a ton of questions. Scour the Internet. Buy a Physician's Desk Reference. Read every book ever written on their illness. Keep a journal. Your loved one will be better off for it. You don't have to be annoying about it. It doesn't have to become your whole life. But, you should be knowledgeable. The doctors, surgeons and pharmacists don't know your loved one as well as you do.  Make them accept you as a part of the treatment team. 

That being said, don't become the "parent". (Unless, of course, you are the parent, then skip this and carry on).  S still knows more about what is going on inside him than I do most days. If he is feeling good (or reasonably good), I don't go to his appointments with him. I may write a note, if I feel strongly about something, but he is perfectly capable of talking for himself. I do question him and ask to see his prescriptions before we leave the parking lot. That way, if I notice something amiss, I can run in and talk to a nurse. But, overall, he's on his own. 

I also don't shove my knowledge down his throat. I will mention certain signs or symptoms, but I don't harp on it. My research and information is for me only. On the other hand, he knows how much research I have done, so if he has a question, he will ask me. But, its only a small part of our conversation. I don't want our life to be all about his disability or pain. We have much bigger fish to fry...such as how do we keep our dare-devil one year old from climbing up on the roof...

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