As the school year begins, the NCAA and draft pics for teams are popping up in headlines on all the major news outlets. Like a team manager or coach, you have to build your medical team, drafting doctors who will work together on you. Instead of the NCAA (sorry, I'm a Nova Wildcat and the NCAA is very important to us), you're players are part of the AMA (American Medical Association). Instead of points scored or yards run, you're looking for specialties and concentrations in their professional experience. And instead of reaching the division playoffs, you're goal is a stronger, healthier body with a consistent care plan.
For many invisible illness sufferers, the word "doctor" can raise the hair on our necks. We've spent years dealing with dismissive doctors who thought our symptoms were in our heads, embarrassed ones who tried to make us feel stupid to hide the fact that they didn't know what was wrong, ones who were just downright rude, and one of my favorites - doctors who had "God complexes". Those are the specialists who only want the most dramatic cases where they can perform some extreme procedure and cure their patient to great accolades from their peers.
However, one of the best things we can do for ourselves is to pick through this minefield of egos, and persist through quite a few trial-and-error experiences, to build a team. When done successfully, this team can eliminate many problems.
Chronic illnesses usually affect multiple systems in the body and require more expertise than one doctor alone can reasonably possess. I'll use myself as an example. Most critically, I need a rheumatologist, but I also need a general practitioner, opthamologist, cardiologist, gynecologist, and sometimes even a dermatologist, allergist, and orthopedist. I've found that many health systems now include information on each doctor on their website that helps indicate specific conditions the doctor is familiar with, and that is VERY helpful for me. I'll also add that living near Philly is a great advantage with finding doctors, as it is the birthplace of medicine in the US and held it's leading position ever since. Other major cities usually have similar benefits, while those in more rural areas have to pretty much take whatever doctor they can get and hope for the best.
Before I go off on a tangent about the doctors I see, I just want to make my 3 points for sufferers in general. 1. A lot of doctors will be uncomfortable with the conditions you have. You need to keep searching until you find ones that ARE versed in your condition, or at the VERY least, try to learn about it between your visits and listen to whatever information YOU bring to THEM. 2.When you have a chronic illness, you may find that your general practitioner (often called a 'family doctor') won't want to treat you at all, instead sending you to your specialist for every complaint. This is also someone you need to boot from your team. You need a doctor who will be comfortable figuring out when it's a normal cold they can treat as opposed to a component of your condition that requires specialist attention. 3. Finally, in today's world of outpatient care, most doctors act fairly independently, treating whatever part of your body is their specialty and sending you along to the next doctor for the next problem, and sometimes their plans for you will conflict each other. However, YOU are one person, one body, one soul, and need one care plan. As much as possible, try to find doctors who are willing to work with what your other doctors are telling you, maybe even *gasp* contact your other doctors themselves to discuss the situation, and agree on a plan for you. This will help you streamline your life (believe me), AND will ensure more consistent care for you (helping you get closer to that "stability ideal" I mentioned the other day).
Building my Team (The rest of this post is about me personally, so if you get bored just skip it:) I'm including it because, well, it's kind of theraputic to lay it out, but also because it can give people an idea what type of choices they may face with doctors.)
Rheumatology is a very broad field, and naturally every rheumatologist can't be comfortable with every condition. When I initially moved from a pediatric doctor to an adult one, my former doctor helped me locate one (I won't use names) who is world renowned for Sjogren's. As a matter of fact, this doctor pioneered many testing methods and drugs for use with Sjogren's. However, after around a year of visits, I was so unhappy with them that I switched doctors (my main complaint is that this doctor only wanted to treat my Sjogren's and ignored my other conditions as well as complaints I had about some of the medicines they prescribed, though the absolutely intolerable, incompetent, unresponsive office staff was a big motivator as well). My current rheumie, whom I have been happily seeing for a few years now, is actually located in an Osteoporosis/Osteoarthritis center, but thanks to that online system, I knew she had experience with some of my conditions. She's great, and I credit her with much of my current stability.
I'm still struggling with the GP (general practitioner) issue. I had one who was pretty good for a while...she was comfortable with my conditions and treated my 'regular' complaints and illnesses quite well (she always knew exactly what to prescribe when I had a respiratory infection to clear me up quickly, whereas other doctors never seem to hit the nail quite so squarely on the head). However, she was fairly unprofessional, and over time began nickle-and-diming patients, and peddling other partner services so heavily that I felt like I was making appointments with a used car salesman instead of a physician. I had to move on. I'm currently seeing a doctor who seems ok with my other conditions, but isn't thrilling me. For my last infection, she prescribed an antibiotic I'd been using since I was little and have an resistance to now, so I didn't get better for a couple of weeks. Also, we've found out the hard way that when we call the office that I need a sick visit, we were told the doctor would call us back but were not told that it wouldn't be until 8PM that night (and yes, we did call back after a few hours, and were simply told again "the doctor will get back to you"). When I get sick, I need to at least speak to a doctor within a few hours, not an entire day. If I had needed to come in to see her, I wouldn't have been able to get an appointment for another 2 days at that point. As we head into the flu season (and especially with the threat of swine flu), I'm already worked up knowing that my calls will probably be shelved, when my profile fits that of the people who are dying from swine flu. (I don't mean to be dramatic, but it pisses me off.) However, she's better than one I used to see who wouldn't so much as treat a cold or bronchitis (which I get a lot) because of my other conditions. So, I'll stay with her for the time being but if I get a lead on a more reliable doctor I'll be making a switch.
Sjogren's attacks tear-producing glands, and therefore can cause a lot of damage to the eye (as well as sometimes affecting eye pressure). Ironically, one of the drugs commonly used to control Sjogren's that I take (Plaquenil) also attacks the eye and can build up in the back of the eye. Therefore, an opthamologist is another important player on my team. This is a doctor who MUST be a team-player for me, because my other doctors need to rely on the tests and plan this doctor does with me to make their plans (for example, if my opthamologist finds evidence of a problem from the plaquenil, my rheumatologist would have to take me off the medicine which would then mean finding a whole new plan to try to control the progression of my disease). However, yet again, this is a trouble spot for me lately. I have a little trouble with some of the eye tests, especially the one that checks eye pressure, and have had a run in with a doctor who snapped at me, telling me even little children sit still for this test (I countered that children also don't know better than to poke themselves in the eye, but I do). After that, I found a doctor who performed the test very well and with plenty of patience, and overall I was quite happy...but his office staff was a nightmare. They broke HIPPA (my husband, a medical professional, was sitting in the waiting room and heard them loudly complaining about me and my case, by name, in the lobby), one technician who ran some of my tests didn't even know what they all were, let alone how to do some of them, and when we tried to resolve a billing problem they were completely rude and uncooperative. It also turned out that my insurance won't cover some things with them. All told, I now need to find ANOTHER new eye doctor. I need tests run every 6 months, and am now already 2 months overdue because of this. Also, the baseline tests he did are now probably going to be withheld and therefore not of any help going forward.
Naturally all women need to see a gynecologist, and in general this team position isn't too hard for me to fill. Most gyn's are versed enough for what I need right now...my biggest issue was horrific period pain (my parents and I had a showdown every month when I preferred to lie on the cold bathroom floor for hours due to cramps, which seemed to bother them), and birth control pills that any gyn can prescribe take care of that sufficiently. I've had one or two ovarian cysts, but none that serious by relative standards, and they do not currently require special treatment. To be blunt, Sjogren's can cause dryness problems in the reproductive system for women which would need medical attention, but this is not something I currently suffer from (and that's enough personal information for a lifetime, right?). However, when I'm ready to get pregnant, the whole game will change. I have elevated levels of a few specific antibodies, which increase the likelihood of certain birth defects, such as fetal heart block. Mine will automatically be a high risk pregnancy from the word 'go'. When I decide to prepare for pregnancy (I'll need to go off my medicines and wait a certian amount of time for them to truly clear out of my system), I'll need to find an ob-gyn who is well-versed in the risks I'll face and prepared to help me avoid or work through them. She'll also need to work with my rheumatologist to control both my health and my baby's health through and following pregnancy.
I don't currently have a cardiologist, but I probably should. The dysautonomia (sometimes along with the Raynaud's and Sjogren's) affects many things that fit under this specialty (blood pressure, pulse, circulation, and body temperature). I tend to run tachycardic on occasion, and have been getting PVCs and palpitations since high school (I describe PVCs and feeling like someone thumping the inside of my chest wall with their finger, like you might thump a melon. It's not painful, but startles me and usually come with a brief shortness of breath and feeling of wooziness). If not controlled, my blood pressure plummets and I have been known to pass out from it. Beta blockers can be prescribed for these conditions, but they are complicated to use and often cause side effects more troublesome than the conditions. Luckily, I usually control my blood pressure just by eating a high sodium diet (it's AWESOME:)). However, I really should have a cardiologist making sure nothing else is wrong and to have input on some drugs. One of those medicines I mentioned that the first rheumatoligist gave me? Yeah it has a potential for problems for people with dysautonomia and had I been seeing a cardiologist at the time, he or she may have taken me off it long before I took myself off.
As mentioned, I sometimes need to see other specialists, and the annoying thing is just about everybody has to understand my autoimmune diseases to work with me. I have a great dermatologist, which is important because Sjogren's and even Raynaud's can affect the skin. Knowing what symptoms are related to these conditions is crucial when she treats me because they can mimic other conditions and require entirely different treatments. I don't see an allergist on a regular basis but did see one a few times when my allergies were out of control. Fortunately, he also had a good grasp on the situation. It turns out (as he explained it to me), we have defense systems in our bodies sometimes referred to as T1 and T2 (autoimmune system and allergies respectively). He said typically someone might have a problem with one system or the other, but very rarely do they see patients with problems in both (tada, I'm sooo special). Him knowing this helped us figure out treatments for me quickly, which was important because not only were some of my symptoms severe, but allergy attacks involving my eyes, nose, or throat with Sjogren's can be serious business. Furthermore, most allergy medicines are contraindicated for use with Sjogren's, because they usually 'dry you out' whereas Sjogren's keeps me dry to begin with. The doctor was able to prescribe a combination of a not-too-strong antihistamine (dries you out) with Zantac (a stomach medicine) to limit how much I was dried out (who knew you could do that). Lastly, I SHOULD be seeing an orthopedist. With my conditions, I have a lot of inflammation and other problems with the connective tissue in my joints, and have at least a some level of tendinitis in most parts of my body (some more than others). I'll spare you my specific complaints for now. The problem is that most treatment plans for this involve physical therapy, which is just a time and money commitment I can't make right now (2-3 times per week, with a copay each visit). I could have found the time this summer while unemployed, but couldn't afford it, and once I begin work in October, I may have the money but definitely not the time. That will make for a good post about work-life balance another day:)
So that is my doctor team soap-opera in a nut shell (yes, believe it or not, that is a condensed version of the story). Obviously, each person will face their own specific set of problems (or victories) with building their own team, but the problems I face my story are fairly typical and can give people an idea of what they might run into. It's also nice to be able to ramble on about it, thank you for the opportunity to vent:)