I have been in a whirlwind of tests and doctors visits. In and out of the ER for dehydration and high blood sugar and feeling ... Well not very good. I have known over the past 6 months that I have been getting worse but sometimes it is hard to really see where you are because you are struggling so hard to just keep going.
I had a wake up call in the form of my new pulmunologist last week. After struggling for 5 months with the OHSU pulmunologist and realizing that the new treatment plan was actually making me worse, my family doctor and I began to gather some referrals. He thought to ask one of his drug reps, "If you had a critically ill family member that needed a pulmunologist, who would you want them to see?" He did not even hesitate, he said, "I would send him to see this Dr because the man is brilliant."
So last week I headed to see the new pulmunologist with a bit of fear and trembling and a lot of exhaustion. I was taken first for a chest X-ray, then run through a battery of breathing tests, lots of paperwork and questioning and then sent to wait in the exam room. After I had waited a while a man rushed in with his arms full of charts, looked me in the eye and said, "what are they f___ing thinking?" As I looked at him in confusion trying to figure out the context, he said, "why aren't you in treatment?" Oooh, it all began to fall into place.
It seems he had all of my records and was carefully reading through my test and lab reports and came across my immune panels. After questioning me a while he went back out with all my charts. I could hear him calling Dr's offices, asking questions and trying to get a handle on what had been happening. After a very long interval, he came back in and sat down, looked me in the eye and said, "you are very sick, frankly you are dying. You have to get back on treatment. Any other care we give you is just palliative if you do not address the elephant in the room."
As I sat and listened to him, I can remember thinking, I really appreciate his bluntness. I was amazed at how clear and decisive he was and that frankly I think the man is brilliant as he continued to put all the puzzle pieces together. Before I left, he had referred me to a new immunologist, had a very sensible course of treatment, ran new immune panels so the new immunologist would have what he needed to make a decision, wanted to hear from the other doctors and pointed out that he believes that it is not a single issue but a multi level issue with my immune disease at the center.
So tomorrow I meet with the immunologist and hopefully develop a treatment plan. And I have to say that given everything I have been told, treatment does not sound quite so bad.
I just want to live my life fully, with grace, with humor and with courage. I believe that the best is yet to come.
Just Connie
