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.
Doug’s Impressions:
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).
Nichelle,
What a blessing! Praise God! 🙂
Very bad day for Nichelle today. Severe nausea, dry heaves, lengthy episodes of nasty pain, and exhaustion. She hasn’t made it out of bed for more than a few minutes.
I’ve wondered, as have others, if it’s possible for Nichelle to “overdo it” when she is feeling slightly better, and then pay for it the next few days. I never thought that was the case. To be honest, the good days come so rarely, that we don’t really have much data on which to base such an evaluation. If nearly every day is likely to be a bad one, how would we find a correlation between activity one day and a “bad day” the next?
Saturday night after I sent David (our 7-year-old) to bed, Nichelle told me he had been talking with her about her being sick, and had been crying.
I went downstairs a few minutes later to check on him, and found him in his room alone, still crying. He said, “I just can’t stop crying.”
I tried to answer, but found myself instantly weeping as well. I hugged him while I sobbed, and tried to get enough composure to speak. Finally I managed to convey that there was nothing wrong with crying, and that when we feel very sad about someone who is sick, our own sorrow shows how much we love the person. I explained that I often felt the way he did, but went back upstairs having left him feeling better and laughing.
Then it was my turn to cry some more.
Sometimes it can be hard for people to understand how something relatively simple and apparently non-stressful (when you’re perfectly healthy) can actually be quite stressful for someone with a debilitating illness. I can remember people saying a trip somewhere wouldn’t be stressful, that I would “just” be sitting, but I remember ANY change in my everyday routine was overwhelming…even “just” riding in a car! There is a point in long term illness when you can push yourself a little to enjoy something, knowing you will pay for it later, but it’s worth it. Then there is a lower point where anything out of the routine is just too much. I remember that when I had been ill, multiple surgeries, etc. for a long period of time my body started breaking down in lots of unrelated areas, too. (which all disappeared when I got better, btw.)
But Hallelujah for Boston doctors!! They come through once again! What a blessing that we live so close to Boston medical care, but it’s too bad that it is such a long road now to get referred there (ah…insurance companies…) AND you got to have great Near Eastern food, too! (though I’m going to have to lend you my Lebanese/Greek daughter-in-law to help with the spelling! ;)(Not everyday words for us!) I can get you some great recipes, too!!)
You did a really good job talking it out with David, Doug. Beth still remembers how frightening my extended illness was for her, but her brother was too young to really remember much. (Beth was about the same age as David is now, but not quite as forthcoming as he is. Trust me, it’s a blessing that he is willing to talk with you about it!)
And what is Mark doing commenting? I though he was in NYC! (checking out the old internet, eh Mark?)
Spellings for felafel, tabooly, and shish kebab were taken directly from the menu. Don’t blame me. 😉
But recipes would be most welcome, although they will have to wait until Nichelle feels well. I can make banana bread (the whole wheat version was excellent, by the way) and heat pasta, but should not be trusted in the kitchen with anything more complicated than that. If L. is in town, she can always come cook for us.
Thank you for the encouragement regarding David. It had occurred to me that it was a good thing he was talking about it. Every now and then we try to sit down with all the kids together and make sure their concerns are addressed. John and Isaac tend to be the quietest. NaNi continues to make plans for when Mommy is “all better.” David seems to suffer from infirmidatus sympatheticus—lots of complaints of leg and stomach pain—which has been better since we talked to him about that specifically a few weeks ago.
You’re kidding! It must be an “English as a 2nd language” kind of thing. Just so you’ll look good next time…it’s “falafil” and “taboule”. [I shop the Near Eastern section of the supermarket! ;)] I’ve got a GREAT recipe for couscous; I fiddled around with it trying to get more taste. It may not be authentic, but it is quite yummy!
Speaking of “English as a 2nd Language”, there’s a book in one of my favorite book catalogues I have been tempted to buy, called “Here Speeching American”. It lists signs found in English (for tourists) in foreign countries: “Keep all fours in bus – eyes only out window” (on Mexican bus); “Compulsory Buffet Breakfast” (hotel in Vietnam); “Go Away” (Barcelona travel-agency window); “Swimming is forbidden in the absence of the savior.” (swimming pool in France)…you get the idea. On the other hand, I can make the French weep when I speak French…who knows, I may have made it into a French language book about American tourists! 😉
I checked a couple of online dictionaries and Wikipedia, and my spelling of felafel was correct. Tabouli (or tabbouleh) seem to be the preferred spellings, for that dish which makes us both wrong.
I have a great photo of an English sign from the immigration checkpoint in Cd. Juarez, Mexico. It’s completely incomprehensible! I’ll try to find it.
Our greca (espresso urn from the Dominican Republic) had some great instructions on it (probably from China). I have kept that somewhere … Both these references were pre-computer, unfortunately.
Really? That’s the way they spell it on the products. It could be there are multiple spellings in English. I noticed in Crete, for instance, they can be rather free with English spelling.(which is how I got us lost in the mountains – it wasn’t my fault…the spelling on the signs was different from the spelling on my map. Really! We got to see some beautiful views, though, thanks to my error, but Colin didn’t particularly appreciate driving on the narrow, twisty road in 2nd gear all the way down…in the dark!) But since they have different alphabets, as does the Middle East, there can be a lot of flexibility in the translation. I stand corrected!
Tim introduced me to falafels/felafels after he spent a semester in Israel. While I was visiting him in California, he took me to an Israeli fast food restaurant. They were really good! His father-in-law makes good ones, too, but I REALLY like what he does with lamb! The best thing my new dau.-in-law and her family have introduced me to is pita from a Lebanese bakery. It has taste!! I didn’t even KNOW there were Lebanese bakeries around! What a difference in taste and texture, compared to what’s available in the average grocery store. Try it if you get a chance. I’m not used to the taste of their cookies, though. They use different spices than what I am used to. [I don’t care much for English cookies, either…but I LOVE their cakes with hot toffee and custard toppings!] Aren’t we blessed to live in a country with such a variety of cuisines!
Okay, you’ve convinced me. The next time you visit, you are welcome to bring all the Lebanese food you can carry to share with us, even the cookies.
And what’s the deal with getting so far off-topic? It’s not like this is Beth’s BLOG.
The 9 days have been very bad ones for Nichelle. She has spent about four of them in bed, and the other five days have been on the low side of what we consider normal, although she was able to pick the kids up at school one (or maybe two) days. She was distressed that yet another Sunday came around without a chance of being able to attend church services.
Up until Thursday, I was at an unusually low point myself; God seems to have lifted my despair quite a bit since then.
Seeing Nichelle in pain, with absolutely nothing I can do to help her, literally makes me hurt. I pray we get some answers soon.