Tuesday, March 10, 2009

Advocating - Sometimes It Works, and Sometimes It Doesn't

I think for me one of the most frustrating parts of having chronic illness is the constant need to advocate for myself. It is tiring, both emotionally and physically, but I know it is important so I do it to the best of my ability. I encourage others to do it as well, so it is an area where I try to "walk my talk".

I was scheduled for surgery on March 18th. Because I have a complicated medical history, I addressed issues with my doctor as soon as we agreed that surgery would be necessary. I take pain medication daily, so that is a big issue that has to taken into account when you are talking about having any sort of procedure. For one thing, my body is used to having that type of medication, so my need for proper dosages of anesthesia and post operative pain care are different than the average patient. Another complication comes in from the area of my adrenal insufficiency. Because my body doesn't make cortisol the way it should, I have to take hydrocortisone daily as a replacement. Any time I am sick or under a lot of stress I have to take additional doses. This is especially true for something like an operation or procedure. It is another item that needs to be dealt with before any surgery, hospitalization or procedure is done.

Knowing all of this, I have been diligent in getting my GYN (who will be performing my surgery) to contact the other specialists who handle these different aspects of my care. It is annoying to always have to be the one who brings these items up, but I have learned from past experience that the only person who suffers if I don't is me, so my advocating for myself is purely self-interest.

Despite the fact that my surgery was scheduled over 3 weeks ago, and that I have tried to make sure that all of these factors were taken into consideration, I learned yesterday that my surgery was being cancelled for the 18th and will have to be re-scheduled. The long and short of it being I need to be the first patient of the day to deal with the pain management control area of my case. One doctor blames another for overlooking this crucial point, but the fact is it doesn't really matter who is at fault because once again the person who is affected the most is ME. I am annoyed because I have spent the past few weeks getting ready both mentally and physically to have this done next week. I have spent time going to appointments that revolved around pre-op stuff, making sure that people would be available to help me out after the surgery since I won't be hospitalized, getting things in order at home and a million other tasks that required my energy and focus, both of which are always in short supply when you are chronically ill. Now I will have to wait for the surgery to be re-scheduled and repeat the whole process all over. Not only it is frustrating, it is upsetting.

The best part is that the doctors and their offices actually have the nerve to act put off by this, as if being chronically ill and needing all these special arrangements are something someone enjoys and likes having to deal with! Again, even with the best advocacy I could provide, the person who ends up paying for the mistakes of others is me, and as if that isn't bad enough I also get treated to a dose of attitude on top of it. I could understand their feelings if I waited until the last minute to provide them with information that caused them to have to re-schedule, but since the errors aren't mine I don't appreciate having to deal with hostility at their own mistakes being directed at me.

The only thing I can say is that in the past, before I learned how things really happened in our health care system, I would have trusted that the doctors would take care of all of this, and instead of facing a postponed surgery, I would be sitting in the surgical area without proper pain management and facing the possibility of adrenal failure or shock from lack of treatment for my condition. So I guess instead of looking at this as the total failure of my advocacy, I should look at it as a small victory - I no longer allow myself to be treated that way. I will have the surgery when the proper procedures have been put into place to make it as safe and effective for me as possible.


Leslie said...

I completely relate to what you are saying here. In a lot conversations I've had lately, I find myself saying how oxymoronic it is that those who are sick and tired often have to advocate for themselves. As the title of your post suggests, "Sometimes It Works, and Sometimes It Doesn't".

As always, thanks for your comments on my blog.


Renee said...

I am so sorry you are going through all this right now, but it is good you are able to make your needs known! It is just so exhausting. You are in my thoughts and prayers.

Aviva said...

So sorry you had to deal with that. I can totally identify even though my issues are different.

But you're right -- it's WAY better to be dealing with the frustration of a canceled surgery and the now wasted preparations than to have found yourself post-surgery with out of control pain and other issues.

Hang in there, and I really hope they get it right next time.

Anonymous said...

I'm sorry to hear about this. It is frustrating and frightening too. I often think about those who can't advocate for themselves. What would happen to them in these situations?

Sorry again. I hope the next time the surgery is scheduled it all works out.

Anonymous said...

We learn over time that we have to be not only our own best advocates, but also our own best friends. Trust is difficult to maintain when we give so much of it to those outside of our situations. But, it is essential for hope...

I'm glad to hear so much strength and self-determination in your voice. I'm sending lots of support and prayers your way~


Debra said...


I understand your frustration which is why I have not been as proactive about my doctor visits lately. Going through the medical mill can be extremely eye-opening. The numbers of good, caring doctors who truly have our best interests at heart haver decreased dramatically. I hope that your surgery gets rescheduled very soon and that things go smoothly with the pain control. Like you, I rely on narcotics and other meds in order to function daily. This makes us different animals, so to speak. Good for you for knowing what you need and standing up for yourself.

I am seeing a new doctor tomorrow so that I can update my condition and my bloodwork. Not looking forward to it, but my pain doc wants me to go.

Be well, Maureen.