Life · Uncategorized

How to keep the ‘medicine ball’ in my court.

Saying “it’s complicated” is an understatement when discussing new or changing treatment plans of any chronic condition. It’s not plain and simple like when you’re a kid with an ear infection and your parents take you to the doctor, the doctor gives you a prescription for antibiotics and then your parents spoon feed you banana flavored goo for a couple weeks. After that it’s all said and done. Problem solved. While maybe YOU weren’t the one in charge, your parents knew what was going on, they knew what to expect and they felt comfortable following doctors orders.

It doesn’t change much as you get older and have to handle it yourself, a bout with strep throat, a yeast infection or even a broken bone and it’s still pretty un-complicated. You know what’s wrong, you trust that your doctor knows whats wrong and that they know how to fix it. You follow their advice, take the medicine they prescribe and after a set amount of time you’re back to 100%.

That all changes when your symptoms and the causes of them aren’t so easy to diagnose or treat. Not every medical problem has an easy solution… far from it. It’s easy to continue on with tradition and simply follow along with whatever your doctor(s) think is best, but it may not be the best course of action. No one knows your body and symptoms better than you do. Even if you have the best doctor in their field, they still are fallible. There is information out there (or internally in you) that they don’t know about and/or don’t understand and unfortunately following aimlessly whatever direction your doctor pushes you in doesn’t always end well.

That doesn’t mean you should be off on your own using webMD to diagnose yourself with 16 forms of cancer, fibrodysplasia and alien hand syndrome with a treatment course of grapefruit rind cordial and ground moon dust tablets. NO! While the world wide web can be  an immensely useful tool in researching your conditions and possible treatments, you and the internet does not a medical doctor make.

You should be in charge of making the final decisions in your treatment course, but you need to first be well informed of the options available to you and you need to be able to trust the team of doctors and pharmacists that are there for you. If that means getting a second (or third, or fourth) opinion, do it. If that means taking your time before committing to a choice between medications, therapies or alternative options, take that time (within reason, obviously under emergency circumstances, you go along with what NEEDS to be done).

Be an informed patient. Be an advocate for yourself and your health. You deserve to know what is going on in your body and you deserve to know what’s going into your body. If your doctor or other medical personnel are keeping you out of the loop or making you feel like your opinion on treatment isn’t valid, it’s time to think about standing up for yourself or at the worst, finding a new team member.

I kind of dropped the ball here…

This week has been a real learning experience for me. A couple difficult doctors appointments, a mix up (and then another one) with the pharmacy and a need for a complete change pain management and autoimmune response control and I felt completely out of control. Everyone had different opinions, everyone had different courses of action and no one was considering how I felt in the middle of it all.

Initially I was overwhelmed and ended up breaking down. I felt helpless and honestly, kind of stupid. Its hard to spend days, weeks, months and even years with health problems that keep adding up with no real relief. It’s easy to just give up and let someone else take control, hell, I was almost ready to. I’m glad I didn’t though.

I first called my rheumatologist and asked to be sent my charts and lab results as well as her notes she had taken about the most recent symptoms and ‘our’ decision to change treatment courses because I wanted to make sure I and the main guy had it all up to date. I then called my GP and moved up my appointment that was for Monday to first thing this morning and asked the receptionist to add a note that it was to discuss new treatment and not just refills or more blood tests. Third I called my pharmacy and got them to cancel all my remaining refills and double scrips (which apparently was causing the problem) and informed them that I would be coming in this weekend with any replacements for ongoing medication after seeing the doc so there is no more confusion.

Could I probably have left them all to sort it out? Yes, but it felt good to take control and honestly it was getting to the point of necessary. In the end, it has really worked out in my favor. The last few months I have been feeling less and less in control of where my health care is heading and it’s not like I’ve benefited from letting all the decisions be out of my hands. New symptoms have crept up, old ones are only getting worse and many of the various medications I’ve been ‘trial and erroring’ have done more harm than help.

My appointment this morning WAS NOT a quick 60 second chat with a scrip and out the door. It may have been day 3 of one of the worst migraines in the last year but in the office I went with my dark sun glasses and my hat, I turned off the second set of bulbs in the giant two fluorescent lights (a nifty trick I learned last time going in with a throbbing skull) and started with an ominous “We need to talk.” While I don’t think that the patients in the waiting room appreciated that I too a whole 20 minutes with the only doctor in that early, it needed to be done and their death stares weren’t going to going to cause me any more pain than I already was in.

It all was worth it. The GP and I discussed the last few slews of lab results, the combined outlook on the variety of conditions that at the moment are up for new treatments and of course we talked about our options moving forward. From now on he will be my only doctor dealing with my medication (to prevent any future interaction issues and to guarantee that there will be no more pharmacy mix ups with him and the other 2) and any communication between him and the specialists about treatments will also be discussed with me. I want to be informed, I want to do my research and I want to be part of the decision. If he didn’t get that before…man does he get it now.

Now that the hard part is over, it’s time for research mode. There’s only so much I can do at a time while still recovering from migraine land but I’ll get ‘er done… eventually. I’m in a realm I’m not quite used to as a lot of the medication options I am not familiar with and a few of them I never, ever thought I’d even be considering, but here we are. I may not have control over my chronic illnesses but I damn well am going to be part of the decision making in how to treat them. The ball is back in my court.



2 thoughts on “How to keep the ‘medicine ball’ in my court.

  1. I know whatcha mean. It’s exhausting to take charge and juggle everything, but that’s the best way to do it. Or finding yourself a case manager to help out with some of the legwork.

    It used to be that the GP was responsible for everything, and sent a person to a specialist to confirm a diagnosis. Not to have the specialist treat that certain condition. It really does get confusing when you’re dealing with 10 doctors who each treat something different, but none of them freaking talk to each other!

    Liked by 1 person

    1. I think the doctors spend a lot more time confused themselves then they like to let on. In the end we’re better off trying our best knowing whats going on ourselves too so that at the very least there’s a second brain and processing everything going on. Going to start having to bring in a mini tape recorder to remember everything that goes on and everything we talk about because there’s always stuff we forget to cover or that I miss with at least one of em!

      Liked by 1 person

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