Live Beyond LimitsTM
Ambassador of Hope and Resiliency
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Cindy's Blog

A Plan: What Matters Most to Patients

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Okay, I’ll admit it; I obviously like a plan. Since my lupus diagnosis several decades ago, I have lovingly referred to my “new normal” (although not too new to me now!) as my Plan B life. Plan A did not include a chronic illness and Plan B does. I never thought too much about my planning until recently, when, twice in one week at the end of doctors’ appointments, each doctor looked at me and said, “Oh, you want a plan?” I think a plan is my feeble attempt to control health issues that otherwise sometimes feel that they are spinning wildly out of control. And let me be clear, I KNOW that I have very little, if any, control over the course of an illness or recovery. Still, a plan gives me assurance that if one thing goes wrong, or doesn’t turn out or work the way that I expect it to, there is something else beyond that to try. That “something else” out in the future is what keeps my hope alive. It keeps me from getting down-hearted or depressed when the first attempt to treat me doesn’t work or the test results show something that the doctor and I did not expect.

I don’t think doctors always understand fully the importance of reassurance and hope (aka: a plan) in helping to keep the patient’s spirit in the game. I need to believe that I will feel better and the doctor is going to stick by me until we come to some type of resolution of an issue that I’m currently having. For the past six months since my back surgery, I have been dealing with the results of a rare medical mistake that has left me in uncharted waters medically. The surgery itself was successful and the two level fusion in my back is healing beautifully (thanks again for all the good thoughts and prayers). But the tiny, unseen mistake that was made during surgery has caused many challenges for which my husband, my medical team and I were totally unprepared. I try very hard not to focus on this, but there are times when new issues pop up and must be dealt with. The two doctor’s visits where I asked for a plan were two such times. Yes, in this new, uncharted territory, I want a map….a plan! I want my doctor’s to relieve some of the worry that my husband and I deal with on sleepless nights and say something like, “I got this Cindy.” That’s the feeling a plan gives me.

My husband (he’s wonderfully supportive and I’m incredibly grateful) and I left both recent doctors’ appointments with “a plan.” We know what the next tests will be, we know what to expect if results are positive and what to expect if tests are negative. We have follow-up appointments and a sense that all will be okay. I sleep better at night knowing this. I know I cannot control the results of the tests and I might not like them, but I know that there is a next step. I also know that tests can show totally unexpected results and I’m confident my medical team will help me deal with that, too, should it happen. I feel that once I have a plan like this, then I’m better able to operate with flexibility within it. When I prepare to give a speech, I create my presentation, study it a few times, then show up without notes and am able to be completely spontaneous and have a good time. Same with vacations; let me get the rooms and travel in place, then we can do whatever we want to fill the days. I’m not ever looking for a tight, confining plan, just a basic sense of security on the outer edges of my life that allows me to live fully within my life.

So, I plan (pun intended) to keep making the most of my Plan B life and to keep looking for a healthcare team who understands me enough to give me a plan that offers the hope and reassurance that things will be okay.

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