Well here it is folks…a good mood. I feel it is my obligation to share it with you since I so seldom experience them these days. Firstly, I may have found the physician that I have so desperately needed and hoped for. In fact, I am thinking that I should have gone to an Immunologist (my new Immunologist) long ago. At any new doctor’s visit, I am typically met with an introduction that goes something like this…”Wow, you have quite a medical history”. And it is true, a lifetime of illnesses, symptoms, hospitalizations, the loss of 2/3 of my right lung; G.I. issues; Immune Deficiency; and about 15 or 16 surgeries (but who’s counting).
On my April 8th visit to my new Immunologist who I will now refer to as Dr. C (for Dr. Compassion), I was gently greeted with a doctor who had twinkling eyes and a kind smile He asked what he could help me with. Little did he know what a loaded question he had asked. And as usual (I fumbled in my head for a minute trying to figure out where do I even begin)? I responded that I would appreciate his help with managing my immune issues and it would be a real bonus if he could figure out what has been causing my health issues for the last 53 years. I don’t know if it’s just me..but I always manage to start a rapid-fire and dis-jointed (thanks to my severe memory issues) presentation of my symptoms. At one point I felt bad because I could see him trying to write as fast as I was shooting out symptoms. Of course my memory is so bad that I can’t even recall every symptom that I am experiencing at any one time. Does that happen to any of you? I mean the doc is listening to my chest via my back & notices a large bruise on my back and mentions it. Oh yea, I bruise really easy also (add it to the list). But you know what I totally loved and love about Dr. C? Not once did he minimize my symptoms; ignore or dismiss them. He came right out and said that I had him baffled. Loved his honesty. Of course, I always thought that my IgA (immune deficiency) was the reason for my lifetime of frequent bronchitis, pneumonias, sinus infections, hospitalizations and lung-removal. Dr. C announced that my IgA number was too high to explain what has happened to me health-wise. I even mentioned that one thing I have noticed on the Sjogren’s World Forum is that many seronegative patients are always having multiple tests that end up being negative. His response (Oh I love him)…”Well, that is the way autoimmune diseases behave”. Dr. C proceeded with allergy testing; pulmonary functioning tests and has ordered a boat-load of blood tests; Chest Cat Scan; Sinus Cat Scan, a Sweat Test; a 24 hr. urine test and more. I tell you this because I have finally found someone who is trying to help me get answers. For those of you who have also found a compassionate doctor, you already know how it feels. There is such a sense of relief as if a very heavy weight has been lifted and in it’s place, is renewed hope. You can’t buy this feeling, but you can sure spend a lot of co-pays trying. I feel like I just received a giant blessing and am incredibly grateful for it.
The other reason for my good mood is because I am headed to the Sjogren’s Patient Conference in Bethesda, MD. tomorrow. I am eager to learn as much as I can about Sjogren’s Syndrome so I can be a better Co-leader for the new Sjogren’s Support Group we are starting here in Pittsburgh. Of course, I understand that what I hear will be quickly lost in my poor memory, but I will be taking notes. I am looking forward also to meeting fellow Sjoggies that I have touched base with online, as well as the folks I haven’t met yet. There is the one nagging issue of my navigational disability..but I have GPS and another Sjoggie friend coming with me..so I should be okay.
If you are someone who has not found the right doc yet, please don’t give up. I know how difficult the process and failed attempts are. But in all my many years of health issues, I have been fortunate to find some great docs (though it can sometimes take awhile). I hope that in the midst of your pain, fatigue and struggles that you have something great to smile about and be grateful for today. We all do…but it is easy to forget that while we fight the never-ending autoimmune battle.
Today I am sharing my big, happy smile with you all, I hope it’s contagious!!