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?    

Lupus And RA Deficit, And Finding A Treatment That Works

Lately, I’m starting at a deficit.  I don’t wake up feeling energized and refreshed, even when I sleep for 10 or 12 hours. 

My boyfriend has made the point that I’m not a morning person.

That hasn’t always been the case.

I used to be a morning person, a late night person, pretty much an any-time-of-day person.  That was before I got sick. 

Now, when I wake up stiff and in pain, and it takes me time to get going, it’s my arthritis that’s talking, not my personality.

When I was in the midst of the latest flare I had, I wished that I could just go to sleep and wake up when the flare was over.

But there’s so much I would miss.

And the thought of sleeping my life away is scary and depressing.

Sometimes you do have to drag yourself out of bed and will yourself to face the day.  I get that.  And sometimes you feel better after you do, but sometimes that’s just totally impossible.

My flare seems to have abated, which means that it looks like Humira caused my lupus to flare.  Which means that I am off Humira for good, and it’s back to the drawing board.

We knew from the beginning that one of the side-effects of Humira is a lupus-like syndrome.  This worried me from the start, since I already have lupus.  And we should have worried, because that’s exactly what it did to me.

I ran into my rheumatologist the other day.  I had been meaning to e-mail him, but hadn’t got around to it.  He suggested that for sure we go back to low-dose daily Prednisone. 

He also suggested adding Tacrolimus to my treatment regimen.  I did some looking around.  Most of the articles about Tacrolimus and RA, and the few on lupus, are all relatively recent, within the last three years.

I’m not convinced.  This drug started out as an anti-organ rejection drug – like CellCept, which I was on several years ago – has been used to treat colitis, and is now being used for people with RA.  The safety and efficacy, from what I read on PubMed, is mixed. 

I wish this was an easy decision, an open-and-shut case.  But it’s not.  The way I’m feeling right now, I could live with this.  On the other hand, I get tired a lot more easily than before; I get winded from walking up three flights of stairs to my apartment.  There are subtle changes I see that don’t make me happy.  I’m not back to where I was pre-Humira or pre-Humira-induced lupus flare.  And that’s frustrating.  It’s also getting colder, and the winter always does a number on my joint pain and mobility. 

This is really the first time that I’ve had a lot of questions after reading about a treatment.  Because while we can’t plan for the things we don’t know about yet, we can plan, and should be vigilant about, the things we do. 

I worry that my chronically elevated liver enzymes, which my PCP recently postulated may be autoimmune hepatitis, my ongoing gyno issues, and the fact that I would like to have a child someday, are all making me reason against Tacrolimus.

I feel like before I start TAC, I need to see a liver specialist, talk to my PCP about my gyno issues, and see if I can meet with a high-risk obstetrician or genetic counselor to talk about what we would be looking at if I begin TAC sometime in the next few months. 

As much as I appreciate my rheumatologist for all that he does for me, he hasn’t been very good at approaching the “How will this impact my future fertility?” question.  He seems to think we should only factor it in when it isn’t hypothetical anymore.  But it’s not.  It’s not a question of if, but when.  And it is also something that I really care about. 

Maybe it would be different if the situation was “take this or you die,” but that’s not the case right now.  And I hope it never is.

Is it bad that the thought of daily Prednisone gives me nightmares?  I’ve always said that I wouldn’t let fear get in the way of my treatment. 

So I’ll say it again.  I’m torn.  Go back to the drawing board and experiment with a new med or tough it out for the next few months and see if I can make it on my own? 

I could tell by the look on my rheum’s face that he has doubts, too.  And that concerns me more than anything else.

I’ve realized lately that I have to pick my battles and commitments.  I can’t do everything.

There are some really promising things happening in my life right now, and while I would love to focus on the good, I am filled with anxiety about the future.  I wish there was a clear-cut answer here.  I wish I knew which decision to make that would be the most efficacious. 

On the one hand, I won’t know if I don’t try.  On the other hand, though, what if I am putting myself at risk for worse things than what I am facing right now? 

And I appreciate so much that my mom is doing some of her own research on TAC, and that my boyfriend says that he will support whatever decision I make.  My health has to come first, but in this case I don’t really know if that means starting TAC or not, especially someone who can’t be on Methotrexate, like me, and cannot be on a biologic, either.

If anyone has heard about Tacrolimus, or on the off chance that you’ve taken it, please, please, please comment or e-mail me.  I would love to hear from someone who has been on it successfully for RA.    

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?

When Is It Time To Clean House?

Honestly, I’m pretty confused at the moment. Shortly before my last major “illness episode,” I requested my medical records. Luckily, what was sent to me ended up including my last emergency appointment with Doctor C.

What’s weird is that what I’m being told by Doctor C doesn’t exactly correspond to what the medical records say. Over e-mail, I was told that my most recent blood work all came back normal. Well, according to my medical records, this isn’t so. I had a positive Anti-Ro, elevated Rheumatoid Factor and high IGG. And the levels that Doctor C reports as “remarkable” are the last three on the sheet and those are all normal.

The report was sent to the wrong PCP. I’ve told Doctor C on three separate occasions that I had changed PCPs, but obviously this means nothing.

It also says that Doctor C “has taken the liberty of scheduling” my next appointment. Actually, and Doctor C and I talked about this during my appointment, I scheduled that appointment three months ago after my last one.

So, what does this all mean? Are these seeming inconsistencies the result of inattention? Forgetfulness?

And if it’s the latter, do I really want someone as my doctor who can’t remember which patient is which?

I’d be lying if I said that I hadn’t been thinking about this, because I have been. There has always been something in my relationship with Doctor C that just didn’t work for me. Sometimes I think, I might be sick, but is Doctor C alive?

It’s no surprise that the doctor-patient relationship is a dicey one, especially for those of us who are more than once or twice a year patients. There are definitely vast inequalities in my relationship with Doctor C and it’s no secret who holds the upper hand in the relationship.

After all, what do I know?

So I’m wondering… Is now the time to find a new rheumatologist?

Although I was hesitant to move on from my first PCP, I felt instantly better that I had once I found a new doctor.

And it’s like the other day. It had been a while since I had really cleaned my apartment from top to bottom. But once I had, even if inside me, I was still feeling disordered, at least the outside was no longer in disarray.

Part of me thinks that some of the problem is due to the fact that e-mail and medical records are even more impersonal than the already alienated face-to-face interactions with my rheumatologist.

The other thing is, I’ve seen my records. I’m currently considered a “pleasant” and “interesting” patient. Do I want to get labeled as combative, uncooperative, or worse?

It seems like our relationship follows the same trajectory as my illnesses – two steps forward and one step back. I always seem to be making up for all of the back-stepping I’m doing.

My last appointment with Doctor C, as I’ve posted about before, was a vast improvement from past interactions. But then the e-mail communiqué that Doctor C fervently encourages is curt, frustrating, and often unhelpful.

I consider myself to be a generally nice person and I try to avoid conflict whenever possible. Even though I know I had a reason to drop Doctor B, I still make my appointments with Doctor F on the day I know Doctor B doesn’t work.

Back to Doctor C. I wonder if finding a new doctor will really be as “cleansing” as I want it to be. Or will I just be filled with guilt about another failed relationship?

Maybe I’m overreacting. Maybe there’s nothing to these inconsistencies and I just need to learn to let things go. But this is yet another instance where I have no idea what to do.

Plus, as of late I have very little appetite, severe dry mouth from the flexeril, and random attacks where my entire body starts to itch like crazy...

When It’s Okay To Say “No” and What’s Your Explanation For Saying It

What happens when someone you know, an acquaintance, asks for your help with something that you shouldn’t necessarily be doing?

Let me give you a hypothetical: An acquaintance of yours is moving (or some other similar event that they would need help with). This is not your best friend, not even someone you’ve known for more than a year. You are asked, along with several other people, in an open invitation, to help them move. What do you do?

I posed this question to a friend of mine recently.

The response?

Leslie, why would you even consider it?

My response back?

Because I’m a nice person?

On the one hand, part of me wonders if I’m there, will they know the difference?

On the other hand, I guess part of me hopes that if I help others, they will help me in return. I know this is naïve thinking, something I’ve known to be untrue for a long time, long before my illness. But I hope that if I ever need help moving, which most surely will happen, people, my friends, would be willing to do that. And I would hope that people would do this for me because they want to, not because they feel bad for me because I am sick…

So, do I give a seemingly lame excuse for my absence?

Or do I get really blunt and say, “I have lupus. I’m not feeling up to it”?*

Again I ask, at what point do people see your illness as simply a convenient excuse for getting out of things?

These types of situations fill me with a ton of anxiety…

I guess we have to learn to pick our battles.

And I’m still having a hard time deciding which battles are worth fighting.

* While I’m getting better at disclosure, I’m fairly certain that there are still few people that know what has been going on. Sure, anyone could Google me and stumble upon my blog. Then they would know. But I don’t just walk around telling people without there being a reason to.

What’s The Deal With This Bone Popping Thing?

This was something I attributed to my rheumatoid arthritis. But I read an essay recently that suggests it’s a lupus thing.

But I haven’t read anything about this in any of my lupus books…

- Why does this happen?
- What does it mean?
- What do I do about it?

Not to mention the fact that it’s often quite painful, like an electric shock to my system, I’m finding I’m becoming like my own rock band – pop, pop, pop!