Autoimmune disorders are a complex beast; no two patients are the same, despite having a shared illness. There is no standard medication, like antibiotics to treat a common flu. Every patient’s custom combination of drugs comes from trial and error.
As a result, following up with only one doctor is usually insufficient. Various departments contribute their expertise to manage these symptoms as a whole. I am under the care of 10 doctors, so my calendar is always packed with medical appointments.
So for those who are wondering why we’re scurrying off for yet another appointment (didn’t she just see her doctor last week?!). Or were curious as to what purpose each doctor serves, here’s a little peek into our lives.
My most important go to doctor. He takes care of my autoimmune conditions such as Lupus, Sjögren’s and Antiphospholid Syndrome. He treats the symptoms of these diseases, such as joint and muscle aches, and blood clotting disfunction. He also monitors the side effects of medications used to control them, such as osteoporosis and skin discolouration.
He is also the one who refers me to other specialists, should he suspect or detect other problems. Perhaps he heard some unusual sounds gurgling in my heart, or found a mysterious lump on my foot. He then refers me to a cardiologist or foot surgeon respectively for further investigation.
2. Rheumatology Nurse Clinicians
I have included them in this list because they do so much work behind the scenes. They work in tandem with my rheumatologist, to follow up on problems of a smaller scale, or of a more predictable nature. I always see them before and after surgeries to ensure that all’s well. They also keep an eye on my INR (blood thickness levels) during turbulent periods.
My rheumatologist sent me to her after he detected strange sounds coming from my heart. Through an echocardiogram, we discovered that the mitral valve in my heart had prolapsed. The sounds were a result of blood leaking back into my lungs, which required surgical intervention after a year. Changes in heart valves seldom happen overnight. It is unnecessary to visit her as often as say, my heart rhythm specialist.
Yes, I see two heart doctors, who look after different aspects of the same organ. I have a heart rhythm disorder called PSVT, which causes my heartbeat to accelerate out of control, when it falls into a wrong loop. And no, rhythms are not something my cardiologist knows too much about. It isn’t because she is stupid; they are just a whole new ball game from valves. It is the difference between the science of measuring electric currents, and the machine operation behind it.
I see a brain doctor for my epilepsy. Out of all the medical specialisations, I have found neurology to require the most guess work. What usually happens is, I update him on symptoms I’ve been having that I think are epileptic in nature. Perhaps I’ve been having giddy spells brought about by buzzing sounds. Or maybe there is a general increase in my visual field auras. He makes conclusions based on my word, and adjusts my medications as needed. From there it is a waiting game until the next appointment and the next; you need to be incident-free on the medications for at least two years.
My steroid dose doubled when I started taking medications for tuberculosis (TB), on top of my usual cocktail of drugs. The maximum amount of steroids you can take depends on your body weight. So for example, if you are 50kg, you would now need 100mg for it to have the same level of benefits as 50mg while off the TB medications. Sadly the nasty side effects are left unchanged, and increases with the dose.
The 30 pills I was taking every day wreaked unspeakable havoc on my mind and body, and I hardly saw anyone but hospital emergency staff for a year. I was diagnosed with clinical depression and anxiety, which stemmed from both the TB and steroid drugs.
Although I am feeling much better now, I still am and have been on steroids for the past 10 years to control my autoimmune disorders. I have been kept on the antidepressants, which I really should have started taking long ago. My psychiatrist also works in tandem with my neurologist to synchronise the use of medications, as they overlap in usage.
I was going for regular check ups with a gynaecologist, and had two D&C procedures done under her. She sent me to a cancer specialist, after we discovered two pre-cancerous cells all over my female reproductive system. My immune system was suppressed by the steroids, which means that these cells can spread without much resistance. He then proceeded to cauterise what he could find of them, both inside of me, and on the surface of my skin. I now follow up with him for regular female check ups, and to ensure that they are not making a comeback.
On a side note, the original suggestion for treatment was to cut out my entire cervix. I was strongly against this, but am grateful that she was willing to put me in contact with someone else. Bottom line is – always seek a second opinion before doing anything drastic.
I first sought her out of curiousity, at the same time I was visiting a psychiatrist. I wanted to know which treatment was more suitable for my needs. I learned that they are two different sets of skills, and that I needed them both. One for the proper maintenance of psychiatric conditions and medication side effects; the other for psychological well being.
The psychiatric medications I take are like a plaster on a wound. While they do help to staunch the bleeding, the underlying cut is still there. It might split open once the plaster comes off. This is where my psychologist comes in, as we work towards stitching that wound up together for good. I have found the sessions so helpful that I continue to see her on a monthly basis.
The medications I take to control Lupus and Sjögren’s can destroy the eyes. They can cause problems such as cataracts, visual field defects, and even permanent blindness. An ophthalmologist monitors changes on an annual basis (although they have yet to solve the mystery of some permanent blindspots in the middle of an eye!). They dilate your pupils with some eye drops, which allows the doctor to examine your eyes in depth. It is impossible to go back to work for up to six hours after; everything on my screen becomes too bright and fuzzy.
While we should all see our dentists on a regular basis, it is extra important for someone with Sjögren’s to protect their teeth. Our salivary glands can dry out, which allows for an increase of bacteria in the mouth. This can lead to the rapid decay of gums and teeth. During bad flares I smear a thick paste all over the insides of my mouth before sleeping. It acts as a protective coating in place of natural saliva, which has anti-infective properties. It also helps to relieve the discomfort of dryness, which is surprisingly painful.
11. Colorectal Surgeon
I lied. Here we are at number 11. Of all the clinics I have been to, this tends to be the one packed with the oldest folks. I first saw him for rectal bleeding and piles that went on for months. Visits tend to be quick (although you wait for two hours) – a finger or tube up your bum and he concludes. I have an open date with him should they reoccur, but otherwise it’s all good for a year.
12. Other Doctors
As anyone with a chronic illness can testify, many of our symptoms can come and go in the blink of an eye. Often there is no explanation, and doctors are just as confused. The conclusion is always an ‘idiopathic condition’, or a ‘birth defect’. As a result, I have seen hand surgeons, urologists, haematologists, and more. I have sought doctors within the same field for second, third, forth opinions. It is amusing how much an opinion can cost, seeing that they are often unwanted on a regular day.
So when someone says that they have a rare disorder, know that they often see more than just one doctor. It is equivalent to a full time job on some days. You can spend up to six hours at the hospital just waiting around for medical tests, appointments and medications.
For those of us in Singapore, seeing that many doctors does not come cheap either. Medical bills can run into the thousands every month. As you may already know, the government rolled out a MediShield Life plan recently. Citizens are able to use their Medisave accounts to cover some of the costs of chronic illnesses. To my surprise, Lupus is not on the list, although it’s as chronic a condition as you can get! Stayed tuned, I shall find out more details in another post!