Posted by: hockeygrl1 | August 17, 2011

Doctors, doctors everywhere!

Lupus is a complicated disease that can affect any organ in the body. Yes, it is attacking multiple organs in my body and it seems like more and more doctors need to get involved. I have a primary care physician. I don’t get to see him much anymore. Every problem I’ve had for the past 4 years has been related to lupus or fibromyalgia. Of course, I have a rheumatologist. She does most of my care. I call her all the time because she seems to know me best. Because of kidney involvement, I have a nephrologist. There seems to be some debate on who does what here for me.

I mean, my blood pressure is elevated. Blood pressure can increase when you’re in pain and I’ve been suffering from migraines all of a sudden. If my kidneys are getting worse, my blood pressure can also increase. They have been holding steady at not perfect, but not getting worse for a while now. So, there’s a good chance it’s not the kidneys doing it, but by having high blood pressure, it can hurt your kidneys.

Do you see the catch 22??? I’m stuck in this, checking my blood pressure multiple times a day. (Yes, I’m sick enough to have a cuff at home) I keep hoping that with the increase of one of the two blood pressure medications my blood pressure will go down. I’m on day two and there’s really been no change. I’ve even been doing my yoga with the headache hoping the relaxation and deep breathing would relieve both. I have to laugh with tears in my eyes because this headache is no joke.

Getting back to all the doctors. Lupus can, and has, the ability to damage any organ in the body. So there can be a cardiologist, a dermatologist, a neurologist, or gastrologist, you name it and someone with lupus has needed to see that specialist. That’s where is gets confusing. I think that it would be wonderful if we had a care coordinator. We could go to that one person with our issues and that one person would contact what ever of the multiple doctors that are providing care for that patient and get back with an answer or schedule the appointment.

I don’t know. It could just be me that is all confused and needs that neurologist. But this sounds so much easier. Maybe some clinics and hospitals already do this. The one I’m going to HCMC currently does not. I’m not willing to switch  rheumatologist’s right now. I like my doctor and she seems to understand the craziness going on inside my body. She also shares information on research she or her colleague’s are doing. Directs me to blogs to read and journals  to read online.

So, other spoonies out there, do you have something like this in place with your doctor? Do you think it would be helpful? Do you have other ideas that may help me? (I am the one that does this all alone. My family does not understand my treatment or disease no matter how simply I put things. In fact, they heard the term remission, and thought I was cured.)

Feel free to post ideas or to share this blog with others. I want all the feedback I can get.



  1. I have SLE and have been going to a group of doctors in practice together. There is a practice of doctors in my home town that consists of many specialists, so my doctor shares files with the specialists he refers me to. Maybe you should check to see if there is a practice like this in your town.

    • Yea, they work in the same clinic. It’s kind of weird to me. She will send me over to him and he’ll say the same thing she said. “lets increase this blood pressure med and see you in a month.” he says the same thing. What the hell?! I kind of feel like they waste too much of my energy. Maybe I’m just too hard on them because I want to be better now, not gradually.

  2. I know that feeling! I hate waiting to see if I am gonna get better. I will say that I work in the medical industry and I try to cut docs a bit of slack because of it. They have a lot of patients and a lot going on. However, they should be communicating with each other better. Maybe they just need to get more organized. Hang in there! I am certainly cheering you on.

  3. I agree with guru… getting your doctors to communicate can be a very important aspect of getting the care you need.

    Sometimes I am shocked when a doctor gets my history wrong, and forgets the milestone events or major medical factors of my case. But, then, I remember that they see hundreds, maybe thousands of patients, and I only see a couple of doctors. Developing that relationship with your doctor so they remember who YOU are is critical. Remember they are people too, and try asking them how they are or how their kids are when they come in the room to talk to you… just an idea that works. I want my doctors to know I realize they have lives outside of just seeing me.

    For example, after twenty years with the same family doctor, he seemed stunned a couple of weeks ago to realize that I also play the piano as well as sing (he knows I majored in music in college) … so, that’s why an 18 month-old hand injury not healing properly mattered so much to me and why I kept bringing it up. His response? “Maybe we’d better send you to a hand surgeon!”

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