First off, I need to thank each of you for prayers. The way God answered was that He brought us to a doctor that not only listened to the massive list of symptoms but also had questions for us. One of which was why I was taking iron tablets. I told her that I am anemic and she wanted to know why. Doug and I looked at each other and thought, hmm, well, I’m not sure why? (Her question was whether there had ever been an underlying cause determined for the anemia.) She was very thorough and up front and also gave an explanation of why some doctors may have passed me on, mainly due to the extent of the work they would have to do in order to properly diagnose and care for me. Doug and I were quite impressed by her and her honesty. We were told that if she can’t help me, she will do all she can to direct me to someone who can.
After our lengthy interview, when it came time for the physical examination, Doug was about to enter the room and she basically said it wasn’t necessary and that he could wait in her office or back in the waiting room. When all was set, she started off by asking me about our relationship and if Doug is adding any stress to my life. I told her what a great husband I have and what a tremendous help and support he is to me. She then told me that she sensed that and that it was great for him to be there with me, too. Typically, her patients’ husbands tend to leave these visits up to the wife (seeing that she’s a reproductive endocrinologist), and figure that they are all set. Also, many times when the husbands do go to the appointments, she finds that they are not so helpful. Needless to say, she was quite impressed by the care of my husband.
I had six tubes of blood drawn for numerous tests. Some to re-do what has been tested in the past, but others to do what hasn’t been considered yet. I go back in approximately six weeks or sooner, depending on the results. I will call her office on Monday to make a follow-up appointment because her receptionist was gone for the day.
Ah, I forgot to mention that the pain did kick in a great deal while sitting in the waiting room, I was uncomfortable on the trip down, but yikes! did it increase. I was ready to lay down on the floor, because no position in the chair was helping. That lasted for quite sometime, but thankfully stopped. Doug went to grab us some lunch nearby, and brought back a chicken shish kebab wrap and a felafel wrap from a Lebanese restaurant, the Phoenicia, at 240 Cambridge Street, just a block away from where we were. Awesome food! I was only able to finish half of my sandwich, but, by the time the appointment was done, we were both hungry and headed back to eat there. [Doug’s note: I was amazed Nichelle felt up to walking the one-block distance to the restaurant. That put her health—at least at that time of day—better than average, although we did have to walk very slowly.] It was absolutely delicious. We couldn’t finish it all of the food—Felafel, tabooly, meat pie, and spinach pie—and brought plenty back with us.
I do need to thank Sandy, Trish, and Cindy for taking care of our kids for us, too. Thanks again for all that you did for us today.
I actually had a little speech planned for Dr. Hall, but didn’t get to use it. Essentially, I intended to ask that she leave no stone unturned to find out what was wrong with Nichelle, and if she believed things were out of her field or specific area of expertise, refer Nichelle to a doctor she knew would do the same. To my delight, Dr. Hall declared almost exactly that, right at the beginning.
We spent a long time in the preliminary interview. We covered a lot of ground. I felt at times like, given the immense amount of information we were trying to convey, that we weren’t communicating perfectly (there are a couple of corrections/clarifications we need to make), but Dr. Hall took all the relevant records from us, and intends to read them. Dr. Hall said Nichelle was, “very observant”: Possible translation—In our increasing desperation to find answers, we’re becoming hypervigilant, and noticing unrelated symptoms which might be meaningless in a larger context. I’ve noticed a little bit of that in Nichelle’s online research. She’ll locate and pass on to me documentation on illnesses that match on one or two symptoms, even though the overall pattern does not match at all. One of the hardest questions to answer was what the most pressing problem is. Do we go back to the odd and persistent fibromyalgia-type problems? How do we divide the fibromyalgia pain from the odd and debilitating symptoms (many of which are pain-related) that occur now?
We still don’t have any real answers. Dr. Hall is not convinced that the problems are endocrinological in nature. (We all believe that they are not all caused by endocrine problems.) It is clear to her that there is not one single diagnosis that would cover everyting. She is also considering some things that have not been looked at, such as an autoimmune disorder, or a hemoglobin problem such as spherocytosis. She also asked quite a few questions about what cortisol tests had been done. I was particularly impressed with her willingness to look at some of the items that we tend to now take for granted, such as Nichelle’s anemia. I can’t remember a test that Nichelle has had that didn’t show anemia, but I don’t think anyone has ever looked for the cause, just as I don’t think anyone has ever followed up on why the anemia hasn’t responded well to iron supplements.
The tests Dr. Hall ordered required drawing six tubes of blood. We wait for the results, and for a follow-up with Dr. Hall some weeks hence.
Nichelle is in very poor health today (Saturday).