Busy Days and Gratitude…

by Nonna

It seems like a lot of time has passed since the last time I chronicled my thoughts here. Has it only been about a week? Time is such a relative thing… much has happened, and yet nothing has really changed — other than the calendar. :) We’re officially sitting at the beginning of 2012 – counting another circling of the sun – but with the Christmas Day and New Years celebrations behind us, for most of us life returns to “normal” now. I haven’t figured out what “normal” means for me yet… not this “new” normal… we’ll call it “new” as I have no desire to count the years that my body has been struggling to be “like everyone else,” and yet has continued on its slow spiral downward.

Last week was a busy week. I won’t hear the results of the MRI until the 10th – for now, I’m choosing not to think about it. :) The rheumatologist appointment was actually very productive – despite the fact that I was terribly stressed out about it. The last time I saw a rheumatologist I was just a girl, and the entire situation was very psychologically distressing. I didn’t realize how scarred I was from it until I was sitting there waiting for the guy to come into the examination room. No matter how sane I forced my thoughts to be, my physical response was basically out of my control – and one normally experienced by people feeling pure terror. Suffice it to say, this woman who can’t keep her blood pressure up – I average 90s over 60s – had a blood pressure of 122/74 when they took it at the rheumatologist office. :) I remember thinking, “If only I could bottle this adrenaline, I wouldn’t have to worry about passing out anymore.” :)

After a thorough examination the rheumatologist confirmed the diagnosis of a genetic collagen disorder… (HMS, hypermobility syndrome or HCTD, heritable connective tissue disorder – on the East Coast and in Europe it’s considered a form of EDS, Ehlers-Danlos Syndrome). He gave me some tips on things to do for me and the boys – but mostly gave me many warnings on things NOT to do… especially for the boys. I was very thankful that he had the names of a couple of places to try to get the boys into so that they can be officially diagnosed in the future. It’s something that needs to be on their medical record in case they ever need surgery, or (heaven forbid) the military tries to draft them. (Of course, being on the autism spectrum is probably enough reason not to be allowed in the military – but you never know…) Anyway, now I’m looking for someone who can help us learn something like Tai Chi or another form of very gentle muscle work – swimming would be perfect, but the boys have chlorine issues. The idea is to keep the muscles strong enough to help support the joints, without furthering the damage of joints in the process. Things like contact sports, running, aerobics, even fast walking are big no-nos – as they contribute to joint destruction since the joints do not sit properly in their places. Even hiking will have to be done at a slow, steady pace to keep the hip joints in place… at least now I know why The Professor’s hips are always popping out… On the one hand, it’s very upsetting to know that I’ve passed on a genetic disorder to my kids (talk about “feeling guilty”), but on the other hand, it’s nice to know why their joints dislocate so much, and why The Philosopher has so much extreme muscle pain – pain that he feels limits him. It’s a relief to know this is “all” it is, and I don’t have to put him through any of the horrible testing I went through when I was a child. And with a proper lifestyle, it’s likely he can avoid a future like the one I’m living – God-willing. (Though it was very likely a virus that began the mess I’m dealing with right now.)

The cardiologist appointment was also pretty productive. She’s the doc who really understands the complicated illness I’m struggling with – she’s studied with Dr. Grubb back in Ohio (the national specialist in dysautonomia), and she’s so encouraging. On the one hand, she was very happy that my digestion is still trucking along at a decent pace – while I can’t eat “like everyone else” – I’m still able to eat, and at this point that is what matters. However, she was not happy with my continued low blood pressure. I saw her three hours after having an IV last Wednesday. Immediately after the liter of fluid my bp was 104/72 – but three hours later, in her office, it was back down to 90/62. She was not pleased. So we’re going to try another medication. My body just isn’t going to cooperate with the fluids alone – as much as I want it to. I’d so much rather not have to try meds again – every time I do, it’s some kind of disaster – but we have to keep trying them until we find one that works. (Hopefully, I don’t wind up in the hospital in the process.) She wants to try Adderall – it will help with the loss of my brain power, as well as hopefully bump up my blood pressure enough to keep me more stable… even if we have to keep the doing the fluids too. I’m a bit nervous – Adderall is a serious med (I’ve no idea if I’m spelling it right by the way). This is one of those meds they can’t just call into the pharmacy – they have to have a written prescription with the doc’s signature… we’ll see. She prescribed me a short lived, low dose… and I’m going to start with a quarter of a pill, just to see what will happen. You never know what my body will decide to do… She also decided I’m “strong enough” now to handle a tilt-table test… so we’ll be getting that scheduled soon. This test is a bit of a nightmare from what I’ve heard, so I’m a bit nervous… but it will give useful information, so I’m willing to go through with it.

It was funny – while in her examination room she asked if a first year resident could come in and see me – to which I agreed. He seemed preoccupied and didn’t listen as much as she wanted him to – but at least he’ll be able to say that he’s “seen” a patient with my diagnosis before. Dysautonomia patients are pretty rare, most docs only read about them in a paragraph in a textbook… she just wanted him to see how debilitating the illness really is. She took pictures of how stretchy my skin is with her phone – pointed out how it relates to the collagen in my veins and impacts my blood pressure… she even pointed out how dilated my eyes were despite how bright the room was because my autonomic system couldn’t control my pupils properly anymore. Anyway, she tried to help him understand the extent of the issues involved with the illness – but of course, he was young, and preoccupied with his own schedule. He excused himself after a few minutes saying he had somewhere else to be… I found myself relieved that it was unlikely I’d ever have him as an actual doctor, and feeling sorry for his future patients. I guess all the docs I’ve seen throughout the years really came into the medical industry already the way they were… maybe specific personalities gravitate to it? I don’t know… I’m just thankful to have found a few doctors who are actually able to listen – they are rare treasures. This “doc” was young though – perhaps with time he will learn to listen.

In the midst of all this… I’m still trying to maintain some semblance of a “normal” life. My brother has been in town, and I’m trying to spend what time I can with him. Today is his last day, and we’re enjoying these last few hours of his company relaxing at my mom’s house. The boys have a terrible cold (another plus to knowing about the HCTD is that I understand now why it can take them so long to get well – apparently people with this genetic issue have more trouble with viruses than the norm). I’ve been up with them a lot during the night, and we’ve been working on keeping up the fluids etc. I’ll be glad when this virus is behind us… I could use a bit of rest. :) Sadly, The Philosopher and I had to miss the first Divine Liturgy of the year last Sunday because he was just too sick to leave the house – he literally slept the entire time my Mister and The Professor were gone. (I’ll admit to sleeping much of the time too.) :) We’re all looking forward to the Vesperal Divine Liturgy on Thursday night… our family loves the celebration of Theophany – God-willing, we’ll be well enough to attend.

I’ll admit that it’s easy to feel overwhelmed with all that’s going on right now. My Mister is headed back to his nursing school classes, I have all these doc appointments, I want to be able to give the boys all they need… there’s just so much going on in life. But really, we all feel that way… life is like that. It’s just life. It’s what we do with it all that shapes who we are day by day… it’s how we live our moments in the light of grace that transforms us from glory to glory. It all draws us to prayer – and it all becomes prayer if we allow it to be… God-willing, I’ll learn more about living each moment in 2012… Lord Jesus Christ, have mercy on me…

With gratitude for each moment:

1281… homemade ornaments

1282… Christmas tree lights

1283… hospital volunteers

1284… Cuties – those miniature orange/tangerines :)

1285… swirled winter skies

1286… hot cocoa

1287… Kindle sample reads

1288… new pocket planner

1289… courage

1290… plug-in heaters

1291… carmel popcorn

1292… chocolate covered pecans

1293… sharing a cup of licorice tea

1294… 16 years after I said “Yes!” when my Mister “popped the question”

1295… visiting with my brother

1296… knitting with dark blue

1297… doctors who want to help

1298… wind and rain — the downed-branch missed our little Humble House

1299… old movies

1300… The Quiet in life’s Chaos

May your New Year be blessed my dear readers… there’s so much to be grateful for!

Lord, have mercy…