Am I A Bad Patient Or Do I Have Bad Doctors?: When Is It Time To Dump Your Doc?

I’ve talked about my lack of attention to pain management, both with my doctors in Michigan and my doctors in New York.

Now I’m having other issues.  After my last rheumatologist appointment, which was in January, I was not told to make a follow-up appointment. 

And I’m not being required to get blood work done every three months like I was in Michigan. 

The last time my liver levels were checked was September, and at that time, only one, not both ALT and AST, was tested.

I’ve been having some itching attacks recently, which typically only happen when my liver levels are high. 

But I don’t want to go to the doctor.  The medication combination I am on now has been working fairly well for the most part, and I don’t really want to have to change it. 

Chronically low white blood cell count and extremely elevated liver levels have always been the downfall of almost every medication regimen I have ever been on.   

Plus, the way my current insurance works, I pay a $15 co-pay for office visits, but then I pay 20% of the total price of the visit and any lab work and other tests.  That adds up quickly, which means that I feel like going to the doctor only when it is absolutely necessary.    

And unfortunately, I don’t have the same rapport with my rheumatologist in New York that I did with mine in Michigan.  Despite his flaws and our issues when I first started seeing him, I really miss him, and would go back to him in a heartbeat if I move back to Michigan.

I’ve been told by several people to switch hospitals for rheumatology care.  However, I will be interning this summer at the hospital that people want me to switch to, and it doesn’t look like their rheumatology department even accepts my insurance.  

So I’m in a bind. 

For a lot of reasons.

How long should I be seeing a doctor for before I feel comfortable with them?  To be honest, I have ambivalent feelings about all of the my current doctors.  They seem like fine doctors, and I don’t expect five years of rapport that I had with my doctors in Michigan to translate into rapport with my new doctors in just a few months. 

But – if each visit is like a date – I’m waiting to get that feeling, and I’m just not.

And I know that my feelings about New York in general range from ambivalent to outright hatred.  But I really want to love my doctors.  Where my health is concerned is of utmost importance to me.  But right now I just don’t love my doctors. 

And I’m honestly not that sure how much they like me, either.         

So when do I walk away?  At what point will I know that it’s time to say goodbye and either find new doctors or get really ballsy and go it alone for a while?    

Responding To The Call

I just want to thank everyone who helped spread the word about my call for submissions. Your help in this effort is greatly appreciated!

If you wanted to write something, but weren’t able to submit it by the deadline and are still interested in doing so, please e-mail me ASAP at gettingclosertomyself@gmail.com so we can make an alternative arrangement.

Thanks, again!

How Do You Get Your Doctors To Talk To Each Other?

Personally, I think this is a huge issue with my care.

Put simply, my doctors don’t talk to each other. I know this because I end up being the one to fill each doctor in on the appointments I’ve had since last seeing them (which tend to be a lot).

Now, I’m not saying that’s necessarily a bad thing. It’s good. It makes sure that I am on top of my health, which is as it should be.

But when I am seeing three different specialists, plus my general practitioner, and the various support staff that I encounter at pharmacies, labs, and outpatient clinics, it isn’t easy for me to facilitate this communication on my own. Plus, I’m not a doctor. I don’t understand exactly everything that they tell me, and there are things, also, that I don’t get told about directly.

At this point, I’m lucky if the report from one doctor is sent to the correct (other) doctor.

I know that having your medical team communicate is an essential task when you have an illness or set of illnesses that warrants multiple doctors and long-term care, but I don’t know how to do it.

I think that, overall, I’m fairly hands-on and proactive about my medical care, given my age and relative inexperience with the medical profession (until now). But this issue is a huge complex in my life. And I’m sure it is for others, as well.

These various doctors make up my healthcare team, and together, they should be committed to moving my care in the right direction.

Along with doctors talking to doctors, there is my job as a patient, being forthright and upfront about new symptoms and things about my care that I don’t understand. And overall, I think I do a pretty good job of communicating with individual members of my team.

But I’m not one of those patients who has been in the system long enough to take my own vital signs and immediately know when something is a problem. I’ve only recently been able to really recognize a flare.

I guess it’s hard, too, when there is no real “leader” of this team. My general practitioner is extremely helpful with offering advice, but in terms of the care I receive, that mostly comes from my rheumatologist.

But I definitely feel like often times, lines get crossed between doctors and I am the one forced to untangle them. As one can imagine, this isn’t always easy.

So, other than somehow forcing our doctors to sit in the same room together and discuss our health care, how do we fill this void, making it as simple as possible for both patients and doctors?

Call For Submissions!!!

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PLEASE FORWARD
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CALL FOR SUBMISSIONS:

Are you:
- A woman in your twenties or thirties who has a chronic illness, or
- A woman who is older, but was diagnosed with a chronic illness in your twenties or thirties?
- Are you either one of those and you blog about your illness?

If so, I am working on a project collecting essays from women about their experience with chronic illness. There are many books available that chronicle the story of one person. And they are great, but… I’m interested in providing women like me with a variety of stories that they can relate to. Although the diseases and symptoms may be different, the overall experience of chronic illness is very similar. I am also interested in having people tell their own stories.

These stories should be in your own words! Tell it well and tell it from the heart!!!

Submission guidelines are the following:
- Essays should be between 5 and 20 pages.
- Please also include a few pieces of advice at the end of your essay that you think other women with chronic illness might find useful.
- Please include a paragraph or so about yourself.
- If you are so inclined, include a picture of yourself.

The end goal is that these essays will be compiled and turned into an anthology for publication.

*** DEADLINE FOR SUBMISSION IS OCTOBER 1, 2008 ***

ABOUT THE EDITOR: Leslie Rott holds a bachelor’s degree in English and Sociology from the University of Michigan. She is currently a graduate student in the sociology Ph.D. program at the U of M. Expressing talent in journalism during her days as an undergraduate student, she has written for a variety of publications, working as a reporter for The Mackinac Island Town Crier and The Michigan Daily. She currently authors the blog Getting Closer To Myself (view here), which chronicles her journey with her own illness and other aspects of her life. And she was recently interviewed by Rosalind Joffe for her widely read blog, Working With Chronic Illness. The interview can be found at (view here).

Submissions or questions? E-mail: gettingclosertomyself@gmail.com.

Why Is Research For Autoimmune Diseases So Under-funded?

I’ve been talking to a lot of people recently, many with lupus, and a similar story seems to emerge. We are on medication and we don’t necessarily feel that much better than we did before we started taking it.

Why is this? Maybe because there hasn’t been a new drug produced specifically to treat lupus in nearly 4o years.

I wonder if instead of having cancer, Tony Snow or Ted Kennedy, or any other popular politico, had lupus (not that I wish illness on anybody), if we would see an increase in research funding.

On the other hand, I found out that Barbara Bush has lupus and clearly that has made a big difference in the cause (as in it hasn’t).*

So what do we do about it?

How many more have to die from a disease that they shouldn’t die from?

* This isn’t meant to be a political piece in terms of which side of the political divide I fall on. This is a commentary on the lack of research funding and just so happens to involve (sort of) the current administration…