As you all know, we had our first appointment with the Psychiatrist in Mayo last Wednesday. I did a marginal job of really updating from that, but the overall gist was: We need to get to the bottom of this and quickly. With the extremely slow pace of getting to here, I was fully expecting a couple months' delay (or at least a few weeks) before taking the next step, but once again, we're in the "hurry up" phase of this roller coaster. It feels a bit like plummeting downward with no brakes and not really being sure where it's going to begin to turn back upward: In a way, it's exhilarating. But alas, it's also terrifying.
A mere two days after that first appointment (which I was extremely encouraged by, in between the barfing in a cup on the way home from whatever stomach bug I picked up), Mark's Dad took him on a return trip to get a second MRI (since his first had been over six months prior) and some bloodwork done. To be honest, I'm not entirely sure what they were looking for with his bloodwork, but I'm fairly certain they didn't find it, since his numbers were all normal. (Well, aside from his B12 levels, which were elevated, but understandable, as he had just had a B12 shot the prior day.) The MRI? Well, we haven't heard back on that yet, and we'll likely find out the results this coming Wednesday when we meet with the Neurologist at 1:45pm.
So yeah, the 6-8 week wait we were anticipating with Neurology? It turned into ONE week. ONE. Tell me that isn't a thing of God! So...I'm taking the day off on Wednesday, and I will be leaving Kinsley for the longest I've ever left her, and we're making a long round-trip drive there and back to hopefully get answers we have been awaiting for the better part of a year now.
The most difficult part has been trying to connect all the minds and information we have. I've had to make a ridiculous amount of phone calls checking to see if one fax has gone through, and which place Mark needs to go sign a release form from, and if the next fax came through, and letting the other office know that they need to prepare a release for Mark to sign there, and so on and so forth. If I'm being honest, that's the most exhausting part of everything. I've always been just horrible at the whole phone call thing, so it has been extremely stretching. And I am probably the most patient person when it comes to pestering people (I HATE it), so I am more guilty of the "Let's just wait and see if they remember" mindset, which is extremely unhelpful in these situations. Having these urgent deadlines has helped. And well...I *think* that at this point, we've got every piece of information we could possibly have gathered in the hands of the people who need to see it.
The Psychiatrist paid me a high complement that I feel I need to hear given all we've been through: She said that we have presented some of the most high-impact information they have ever received in their department. She said that dollar for dollar, we have spent our money on the exact tests they would have performed, and that it is ALL gold, and none of it was for waste. I guess those countless hours staying up into the wee hours of the morning researching and praying and pleading with God for answers has paid off. I am so thankful that he instilled in me the wisdom to know what we have needed to do. But the biggest missing piece that we finally have in place? Well...the sleep apnea diagnosis.
I finally saw the actual medical write up from Mark's sleep study, and it was sobering. Mark has very severe obstructive sleep apnea. He has not seen a REM cycle for who even knows how long (years for sure). When he does actually "sleep", he's getting about 57% benefit. He desperately needs the mask we've been waiting for: Tomorrow *should* be the day. It'll certainly be a huge struggle to get him to wear it, but I am trying to be hopeful that when he does, we'll see some positive changes.
As always, the possible diagnosis of Frontal Temporal Dementia plagues my thoughts. One thing I know: My life is going to be drastically different one year from now. It's either going to be significantly better, or it's going to be significantly worse as far as Mark is concerned. Thank goodness that no matter which place we're in, God is already there and already knows and will lift us up.
I've had a lot more requests for help lately again, and I really do forget to ask for it again these days. I've had a couple dear friends drop off meals lately, and those are certainly helpful. I feel like mostly what I need is just time. I am anxiously awaiting the results on Wednesday to really have a more clear picture as to what the rest of our year is going to look like. I have a LOT of vacation time at this point (I still have about 3.5 weeks of vacation left for the year), and I've been chipping away at it very slowly so far for appointments and such. But if we're going to begin to see improvement with his apnea treatment, I may have a little more liberty to take some "me" time soon. If we aren't, however, and this really is Frontaltemporal Dementia, well then...I have to plan my time off a little better.
I've had people cautiously wondering how we're managing medical bills, and well...we're just beginning to have the latest round roll in. We had practically nothing to pay for all the Neuropsych testing and appointments (just co-pays) aside from the MRI last July. This new round has the sleep study and probably in the next couple months we'll see the second MRI and second half of the sleep study come through. We're managing still: The Lord gave Mark great foresight to pay off all the things beforehand and build a nest egg, so nothing coming through is giving us pause at this point. Still, I'm continuing to shed unnecessary valuables (the Tahoe that has sat in the garage for the past 8 months with hardly being driven, a huge stack of fancy rims and practically new tires sitting in the garage for the past 2 years, etc.) to give us extra padding that doesn't hurt.
We continue to lift our eyes to our Maker for the strength for each day. Still, I'm weary now, and in desperate need of sleep that doesn't come from passing out for an hour after lying down with the babes after reading books with all the kids and putting them all to bed by myself. I'll update as I can from here on out, but it seems short of taking vacation time, I seldom have the hours in a day to keep even the house remotely in order, much less stay on top of updates.
To be continued...
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