Groucho Marx once said that he would never want to be a member of a club that would have him as a member…or something like that. I totally get that. I hate that I am a member of the yet to be cleverly named sick person’s club. Managing disease is a full time job. It takes up so much time and energy, and sometimes I feel like it is all I talk about because it takes up such a big part of my time. When I am juggling lab visits, doctor’s appointments, symptom diaries and procedures on top of diet and the disease’s symptoms themselves, it is easy to get lost in the disease. It can become difficult to focus on the other things in my life and appreciate them, because sometimes it feels like I don’t have time or energy for anything else. The hardest part of being sick is recognizing that focusing on the best things in my life is exactly why my disease takes up so much of my time. I want to be free of the symptoms, and have energy to be a good mom to my son, a good wife and friend. That is what is important to me.
We all label ourselves. I know a lot of sick people who wallow in illness; in fact I have been one of them. It is so easy to get down in the dumps when you are sick all of the time. I have been sick for ten years, the only break I have had from it was when I was pregnant (which obviously has its own set of symptoms.) Being sick for that long would wear on anyone. After a while, it becomes harder than a healthy person could imagine not to be swallowed up by the disease. Especially when it is constantly reminding me that it isn’t going anywhere, either by all the hoops I have to jump through, or by the symptoms.
I have to constantly remind myself that I am jumping these hoops for a reason. Even if I have jumped a million hoops for nothing in the past, all of the stuff I have to put up with may not be for nothing this time. I hope everyday that I recover, that one day I will resign from the club.
I am not Crohn’s Disease, or just any one thing. I know it would be motivational to say that I am thankful for Crohn’s having reminded me of what is really important, and it has taught me not to take anything for granted. I am not going to say that. It’s crap. I know myself well enough to know that I would not have taken anything for granted if I were healthy. I resent Crohn’s and that is why I work so hard to get rid of it, and that is why I have worked so hard to help make sure other people don’t have to know this disease. Although my resentment is an honest admission, if I wallowed in that, I would be a bitter and angry person all of the time.
Acceptance. I accept that Crohn’s is the hand I was dealt, but I have other cards, too. I am going to smile, and give myself the appropriate really long label for my life. So if I could help anyone else battling illness, I would say that no matter how much time and energy are taken up by your disease, don’t let one thing in your life define who you are. Disease is a huge part of my life, but I don’t want it to be the sum of my life, and I refuse to let that happen, and I don’t think you should either.
Friday, November 19, 2010
Thursday, November 4, 2010
Do Your Homework...
Have you ever been asked to attend a business meeting at the last minute, walk into the meeting unprepared, and felt stupid when someone asks you a question that you were not prepared to answer? Yeah, me either, but I have seen it happen to other people, and it is uncomfortable to watch. When it happens at the doctor’s office, it can have an impact on your health, not just embarrassing you at work.
Anyone who really knows me will tell you that I’m a talker. I am capable of active listening too, both of those skills are needed if you are going to have a lifetime membership in the (yet to be cleverly named) disease club. (NOTE: I should have a contest when I have more than five readers…)
When I started having to go to the doctor at least every six weeks, I found that they always asked me the same questions.
1. Weight – I now walk by the scale and announce my weight to the office. I weigh myself daily and have proven to be honest, so they allow me this privilege.
2. Meds – They want to know the meds I am taking and their doses. Nobody who takes as many meds as me (and most other chronically ill people) can just list all of them and their doses without help.
3. Chief complaints – what is going on with the disease since the last visit? Have you ever walked into a record store (before iTunes) and right until the second you walked in knew exactly what you wanted? Then you find yourself ambling through stacks of CD’s trying to remember what you came in for. You walk out having bought stuff, but not the stuff you wanted. That used to happen to me at the doctor’s office all the time. I knew what was wrong before I got there, but as soon as my doc walked in, I completely forgot unless it was throbbing that very minute.
Dani’s Greatest Hits – After a while, I got smart, and I made a list of my meds, then it grew. My doctor’s nurse and I call it “Dani’s Greatest Hits.” It goes like this:
• Meds - At the top, it has a list of all my meds, how long I have been on them, their dose, and results. I put them in a word document and use a little table to make it easy to read.
• Past therapies – after a while my chart got so big that my doc had to thumb through three volumes to see what we have already tried, so I thought he would find this useful. It lists, what I have tried, how long I was on the drug, the date I started and why I stopped.
• Surgical history – all my surgeries, dates, and outcome
• Complaints – Basically I have my entire chart in one document. I bring it to appointments, and that way I don’t get record store syndrome. Also, my doctor doesn’t waste time trying to think of where to go from that point. He likes my greatest hits so much that he has given it to the hospital when admitting me in the past.
I have also found my greatest hits useful when I write to other doctors asking for advice. It tells them that I am invested in my care, and gives them a brief history without taking up too much of their time.
Be concise. If you are not, docs will stop listening and you will not be heard. Do your homework. When they say, “how long have you had this pain?” Say “three weeks” or however long, but know the answer to the question. Don’t start with a sigh, and say, “well, I guess that it started when I was three” (I am boring myself even writing that.) They will think that it must not be too bad if you don’t even know when it started. This goes for the greatest hits as well. Years of medical history I have been able to keep to one page. I am sure this is partially why my doc likes it so much.
Doing your homework tells your medical providers that you care about getting better. It has been my experience that it inspires medical providers to care more than their job requires them to, and that works out well for you in the long run.
Onto that contest for naming the sick club…
Anyone who really knows me will tell you that I’m a talker. I am capable of active listening too, both of those skills are needed if you are going to have a lifetime membership in the (yet to be cleverly named) disease club. (NOTE: I should have a contest when I have more than five readers…)
When I started having to go to the doctor at least every six weeks, I found that they always asked me the same questions.
1. Weight – I now walk by the scale and announce my weight to the office. I weigh myself daily and have proven to be honest, so they allow me this privilege.
2. Meds – They want to know the meds I am taking and their doses. Nobody who takes as many meds as me (and most other chronically ill people) can just list all of them and their doses without help.
3. Chief complaints – what is going on with the disease since the last visit? Have you ever walked into a record store (before iTunes) and right until the second you walked in knew exactly what you wanted? Then you find yourself ambling through stacks of CD’s trying to remember what you came in for. You walk out having bought stuff, but not the stuff you wanted. That used to happen to me at the doctor’s office all the time. I knew what was wrong before I got there, but as soon as my doc walked in, I completely forgot unless it was throbbing that very minute.
Dani’s Greatest Hits – After a while, I got smart, and I made a list of my meds, then it grew. My doctor’s nurse and I call it “Dani’s Greatest Hits.” It goes like this:
• Meds - At the top, it has a list of all my meds, how long I have been on them, their dose, and results. I put them in a word document and use a little table to make it easy to read.
• Past therapies – after a while my chart got so big that my doc had to thumb through three volumes to see what we have already tried, so I thought he would find this useful. It lists, what I have tried, how long I was on the drug, the date I started and why I stopped.
• Surgical history – all my surgeries, dates, and outcome
• Complaints – Basically I have my entire chart in one document. I bring it to appointments, and that way I don’t get record store syndrome. Also, my doctor doesn’t waste time trying to think of where to go from that point. He likes my greatest hits so much that he has given it to the hospital when admitting me in the past.
I have also found my greatest hits useful when I write to other doctors asking for advice. It tells them that I am invested in my care, and gives them a brief history without taking up too much of their time.
Be concise. If you are not, docs will stop listening and you will not be heard. Do your homework. When they say, “how long have you had this pain?” Say “three weeks” or however long, but know the answer to the question. Don’t start with a sigh, and say, “well, I guess that it started when I was three” (I am boring myself even writing that.) They will think that it must not be too bad if you don’t even know when it started. This goes for the greatest hits as well. Years of medical history I have been able to keep to one page. I am sure this is partially why my doc likes it so much.
Doing your homework tells your medical providers that you care about getting better. It has been my experience that it inspires medical providers to care more than their job requires them to, and that works out well for you in the long run.
Onto that contest for naming the sick club…
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