Wednesday Wisdom – Contactable Doctors

I am sure if you have suffered with any sort of long-term chronic illness or disability, you have seen your fair share of “questionable” doctors; people who hold an MD or DO but you wonder if the reason their credentials aren’t posted on their walls is because they “completed their educations” somewhere in the Caribbean. I know that sounds a little harsh, but I also believe I suffer from a PTS(D)-like issue simply from dealing with so many of these kinds of doctors. I have had terrible things said to me (things like “you’re eating too much pizza.” when I was on high-dose steroids for the first time and I was literally eating broccoli and just retaining water like a sponge); I have been dismissed time and again (I believe I have posted my Johns Hopkins immunology story here); and time and again, I have encountered doctors who claim they know “all about Behcet’s” and then talk about the illness and I have no idea what they are even talking about.

It goes without saying that if you continue to see one of these types of doctors, please do yourself the kindness of never seeing said doctors again. I realize there are many areas in the US and throughout the world where the number of doctors who have “experience” with certain rare and very rare diseases like Behcet’s is very low; if you happen to be in one of these locations, I do suggest you reach out to something like the Vasculitis Foundation (in the case of Behcet’s) and find a physician who has experience dealing with your specific health concern(s). Even if you have to plan in advance to make the trip and save money to stay in a hotel, &c., the benefits of having a doctor (or better, doctorS) who know what they are working with and care about the person behind the disease are beyond innumerable.

There is one clarification I want to make here, however – that is, that there are many “good” and “compassionate” doctors out there that are IMPOSSIBLE TO REACH. This has been the case with my recent “eye crisis.” The doctor who “filled in” for my eye doctor at the same practice was, to be blunt and honest, a complete a$$hole. My eye pressure in the right eye was 30 (it is now down to 21; it was 22 when it was checked by an optometrist) and my vision was so bad I couldn’t read the first line of an eye chart (I just got back from the first appointment “available” with MY eye doctor at this practice and I could read down 6 lines in both eyes); and he noted “something” in the anterior chamber of my right eye but instructed the assistant ALOUD not to make a note of it. He refused to do any further testing. It has been a long and convoluted couple of weeks since then, but today when I finally got in to see MY eye doctor (an appointment which, by the way, was INITIALLY CANCELLED BY THE SCHEDULER WITHOUT MY CONSENT), it just seems that whatever WAS wrong with my eye passed. It was something of a waste of time (and money) but at least I know that my pressures are down, my vision has improved, the pain and blurriness and photophobia have all diminished considerably, and my doctor who has seen my eyes over the years said they look the best they have ever looked and that it is a great thing that my body really kind of “handled” the activity in my eyes more or less aided only with Actemra. HOWEVER, although it was good to see this doctor and good to find out all of this information, I walked away without any way of being able to contact him if and when this happens again (it is Behcet’s … so the likelihood of this happening again is almost certainty!). I asked him explicitly how I can get in touch with him when this happens again because my Behcet’s specialist wants me to have my eyes looked at IMMEDIATELY so he knows what is going on – because at this point, no one really knows what happened other than SOMETHING – but he gave me no way to contact him. In my book of “how to navigate the medical system,” this raises a red flag. Eye involvement in Behcet’s is no light matter – especially the kind of eye involvement I have had, ranging from “simple” anterior uveitis to very extensive bleeding around and impinging on my optic nerves that would have left me blind if it had not been tackled with very high-dose IV steroids (and other medications) so quickly. Estimates vary (often depending on genetic markers and ethnicity), but – at least from my most recent research – about 20% of those with Behcet’s and active eye disease go blind. That’s far from negligible. And that is not a number or a scenario that can just wait around a few weeks for an appointment … thus the “red flag.”

I really like this eye doctor, but I am going to have to do some research and find another specialist in the area who WILL provide contact information to me and get me in ASAP with HIM OR HER when I am experiencing such issues – this is CRUCIAL not only to the health of my eyes but ocular involvement is a signal that the Behcet’s is not controlled and it needs to be addressed immediately. I do have to see a uveitis specialist – that’s a NYC or Philly trip – but I NEED a local doctor who will see me when I need to be seen. I have “gathered” an amazing “team” of doctors over the decades and every one of them is a person I can contact immediately if I need to do so. I think it is crucial not only to have “good” and experienced doctors but also doctors you CAN contact in the event of something like this – I am really fortunate that my body DID handle the situation, because in the past it never has been able to do so … and given the length of time that has passed, even a few years ago, I likely would have lost the vision in my right eye from that inability to contact my doctor. That’s unacceptable to me.

Thank you for taking the time to read that, and I do hope that “advice” helps you in some way. If you have “good doctors” now and you have not asked them for direct contact information, please do so and do not be afraid to do so – if they will not give it to you, you do not have to abandon this/these doctor(s), but I highly recommend you find an additional doctor who will see you when you NEED to be seen, i.e., a doctor you can contact either via a health app or via email or phone. That “piece” of the “puzzle” is just as important as having GOOD doctors. It is kind of foolish just to have good doctors if they cannot see you / you cannot contact them to get in to see them when you are flaring or having an issue that cannot wait the weeks or even months it often takes to make an appointment with some of the specialists “we” must see. I hope you are all having a happy and healthy day and ENJOY THE LAST TWO DAYS OF THIS ABSOLUTELY A++++ AWESOME MONTH!! Have a little fun in whatever way you can do so!

❤ Always, Beth