Chronic Illness – YOU MUST STAND UP FOR YOURSELF!

My apologies for having been absent these last few days – as I mentioned earlier, I have been having a lot of trouble with my right eye and dealing with incompetent doctors who have figuratively led me into a wall. Dr. Yazici, the Behcet’s Specialist, wanted me to get in to see “any” eye doctor ASAP and have said doctor check to make sure non of my former ophthalmic issues were resurfacing; unfortunately, the “doctor” I saw on Monday was one of the most rude and dismissive “doctors” I have ever met (and I have met MANY such doctors, as I am sure most of you with chronic illness also have!). He was adamant about me getting in to see a “Uveitis Specialist” at Wills Eye saying he would get me in in two weeks – I heard back from Wills Eye but they didn’t have the doctor’s name (nor did I – he never even bothered introducing himself to me, he started right off on “the doctor you were seeing here TOLD YOU TO SEE A UVEITIS SPECIALIST IN 2017 – why aren’t you THERE?” “Umm … I had a terrible reaction to the Remicade and then sickness from the methotrexate and then I ended up back on high-dose steroids and that gave me 2 compression fractures in my spine so I haven’t physically been able to since then….” “well I CAN’T HELP YOU. YOU SHOULD HAVE GONE TO SEE THE UVEITIS SPECIALIST….” and on and on and on….); apparently they will not even schedule you for an appointment without this information, so they said they would “look into it” and call me back; even after repeated calls to them I have not heard back from them. At any rate, to make a longer story shorter, my eye seems to be improving, just as I have another appointment with another group of ophthalmologists – as Dr. Yazici said, he wanted it examined RIGHT AWAY – and now, over a week later, it is NOT “right away.”

At any rate, the point I am getting at here is that despite the problems I had with the first doctor and the subsequent issues involving their “Uveitis Specialist,” I continued to search for doctors who would get me in this week, at the very least. Time will tell if this doctor is “good” and if there is anything even wrong with my eye(s) at this point (when I went to see the former “doctor” on Monday, he dismissed the discrepancy in my eye pressures, blaming my rheumatologist and PCP for prescribing eye drops they were not “allowed” to prescribe and blaming ME for using them, although I only use them maybe once every week or every other week. When I told my rheumatologist my left eye pressure was 22 and my right eye pressure was 30, checked twice, she made a face of astonishment and horror, especially considering I have had MANY episodes of “leakage” around my optic nerves.). But I just want to say that no matter how awful the doctors are, it is imperative that you keep on keeping on and keep on trying to find a better doctor or better doctors if you KNOW there are issues going on with your body. I KNOW I have a history of fairly severe eye disease and this is not an issue any doctor “should” blow off; I am going to keep hunting for an eye doctor that will at least get me in right away if there is another problem like this, because at this point it really might be too late to know what the problem might have been. I am really hoping this doctor will be “that” doctor.

I will leave you with an anecdote for an example – when you think of Johns Hopkins, you think of the top doctors in the country, perhaps the world. When my immunologist in Pittsburgh blew off my very low immunoglobulin (G and A) level(s), my mother and I made an appointment to see “the best” at Johns Hopkins. I saw the head of the department there; we had arranged to stay for a few days because we assumed I would be undergoing several tests while there. We went into the doctor’s office and he looked at my labs (my IGG at the time was somewhere around 400 – not as bad as it gets, but not good at all) and he told me that what I needed to do was to wash my hands more frequently; that my labs weren’t “bad enough” to warrant treatment, despite having just beaten 2 bouts of C. Diff, having JUST gotten over pneumonia / bronchitis that I had CAUGHT from a classmate ACROSS A CLASSROOM that had left me ill for months, after I had been hospitalized from internal bleeding from catching the stomach bug that was going around at the time. I was so furious I actually took my coat and left. Thank God I had my mother with me; she told him that I had fought for my life for my life and then walked out. After I had seen Dr. Yazici, who had told me that he WOULD NOT TREAT ME UNTIL MY IMMUNOGLOBULIN LEVELS WERE HIGHER BECAUSE THEY WERE DANGEROUSLY LOW, we found a local immunologist who agreed and subsequently treated me. He has been my doctor ever since; he has even taken personal time to visit me in the hospital. The morals here are 1. never give up when awful doctors (no matter how “prestigious”) tell you there is “nothing wrong” when you have symptoms and/or evidence that says otherwise; 2. ALWAYS bring someone with you to important appointments – even if this is a “patient advocate” – just so you have someone else to stand up for you when your emotions are on a roller coaster just from dealing with your illness; and 3. stand up for yourself; NEVER GIVE UP and NEVER just “agree” with doctors because they are doctors (again, especially if you have EVIDENCE there is something wrong) – do not allow yourself to be talked down to – hell, that applies to just about everything in life anyway!

At any rate, I hope you are all having a happy and healthy day, wherever you are in the world! I hope to be back soon to write more about all of the things I have said i will write more about! I hope you are having a wonderful October and remember, my heart is always with YOU!

❤ Always, Beth