Wednesday, July 6, 2011

I never tried hurdles in track...

And there's a good reason!!
Happy Wednesday to you all! I hope you had a happy holiday weekend and a fabulous 4th. Safe and Fun!
Ours was lovely, but I'll give ya more on that later. :)

Back to the hurdles...
I never tried them in school. Wouldn't do it. No interest in the slightest, but more than that, I "knew" I couldn't do them. I still stand by it. When watching hurdlers, then and now, I think it's absolutely amazing that they can get their legs up to do that....not me baby! But maybe even more than those very valid reasons, I'm thinking now that maybe it was a subconcious move on my minds' part to abstain from 'superficial' hurdles since I had plenty of real life ones to deal with. Not to say that anyone else, actual hurdlers specifically, doesn't have issues of their own but you know...I think my brain was working the whole 'self-preservation' tactic. Yay for my brain!! :)
And yes, as is the same for everyone, those real life hurdles just keep a' comin! We've had several lately, but the most pressing at the moment is Dominic's 'probable' MS - Multiple Sclerosis. I say 'probable' since we haven't had a confirmed diagnosis. Almost 3 years ago, all of a sudden, Dominic started experiencing double vision. It occured after a day at his family's ranch slingin hay bales. We thought it was from the strain from the work, but mainly from the incessant coughing he went through from the airborne hay. We figured it would resolve but after about a month of no resolution, we went to an eye doc. She was great. She said it was "6th nerve palsy" and recommended a Neuro-Ophthalmologist. We saw him. He ordered an MRI of the head, face, and neck. Ok. Done. So...... The results were back and said "strongly suggest MS". Ok. There were a couple of potential diagnosis' that floated around before the results were back. None of them felt right to me. There was just something telling me that they weren't it. When the doc said MS...that one instantly made sense to me. It just felt like that was the "right" one, even though there is NOTHING "right" about an MS diagnosis. And even though that one had never been suggested as a possibility. Not to us anyway.
So. He informed us that there were a couple of really great Neurologists in the Chicago area and that Dominic would need to follow up with one so as to get more testing for a definitive answer. Now, so as not to confuse anyone, yes we're in Colorado now. At this time we were still in Albuquerque but were moving to Kenosha, Wisconsin (an hour from Chicago) the next month. Ok. Great!! Except we have no insurance, paid for all of this out of pocket already (1 Ophthalmologist, 1 new glasses rx, 1 MRI of head/face/neck with and without contrast, and 2 Neuro-Ophthalmologist visits...Yikes!!!!) and were paying for a major move....umm......Riiiiiiiiiiiiiiiiight.....
Well, the double vision resolved itself slowly within the next month or so. Yay!! We never got Dominic to a doc while we were up in the midwest...instead, we focused on my new pregnancy (don't even get me started on the ridiculousness it took to get me prenatal care up there-I'll cover that sometime if anyone's interested) and moving 2 families 1500 miles to Colorado. He didn't really have any new symptoms while we were there so it made it easier to put it on the back burner for the time being. Never taken off the stove, just moved to the back...
Well. I'll sum it up and say that he's had 2 or 3 more "episodes" since the initial. Double vision only played into 1 of them and it was brief. The other symptoms were tingling of the arm/hand and leg, as well as some ongoing memory issues. This current one started a week or two ago and is another nasty bout of double vision along with one sided facial tingling, sudden onset fatigue that will then resolve later, dizziness and lack of balance, and a 'fogginess and slowness' of the mind that comes and goes. No Bueno!!!
Well. Enough is way too much! We finally have health insurance so we're using it! He can't possibly continue like this. He works with big dangerous equipment and materials at work. Double vision is a MAJOR safety issue!! Our reluctance to get him in any sooner has been due to the "Pre-existing condition" definition of the insurance company. They define it as a condition or illness or injury that has been tested for or investigated in any way, regardless of diagnosis, for 3 years prior to coverage. Well....it won't be 3 years until the end of November.... SUCK!!!! He just can't wait that long. We need to get started on this as soon as possible to hopefully get some treatment for some of these symptoms.
My amazing husband has been dealing with some pretty crazy and increasingly difficult stuff and never complains. NEVER. He's never had any health issues so all of this is very new to him. It's NOT easy, in any sense. He works SOO hard for us and pushes on regardless of what he's been going through. He's my hero. Even when I haven't had very much patience with him and some of his symptoms. Having medical issues is old hat for me. I dealt with a lot of things for a lot of years. I was flat out told to my face that I was making it up for attention, there was nothing wrong with me, and that I had anxiety when I really had an increasingly serious (if left untreated) heart condition. I dealt with major symptoms for years of both a heart condition and a neurological condition when there was "nothing wrong with me". So I had no choice but to suck it up and figure out how to keep going. You'd think I'd be a little more understanding when someone is having a hard time adjusting to sudden limitations that are beyond their control. Turns out...not so much. Turns out, that my brain seems to think "if you can suck it up and deal with it, so can everyone else." What the hell kind of crap is that?!?!! I haven't always had a lot of patience with Dominic but I tell ya, that stopped this weekend. I have made it a conscious effort to be patient, sympathetic, empathetic, and truly supportive. He says I'm doing great so far. Yep. That's Dominic. Taking time to praise my efforts when he's the one going through this horrible crap. Just ONE of the reasons I love him so much.
So. He's at work today. The first day this week and the first day with the double vision. We're glad he only has one more day this week. And then, on Friday, he has an appointment with a PCP to hopefully get a referral to a Neurologist to get going with this thing.
He's only had one little time (during the 1st episode) where he was angry and sad and did the "why me?!" thing. Totally normal and valid. I don't have those. I don't see the point. Neither does Dominic which is why it was once and very brief. It helps with this, as well as everything else, tremendously. We are however, faced with some pretty serious issues as a result of this and are really trying to see the potentials, their possible solutions, and what they mean for our family. We try very hard not to stress over things that aren't facing us yet or that we have no or little control over. We're pretty good at it. We (me in particular) do however need to take a look at the possibilities to help plan. Having a general idea, regardless of whether or not it works, is incredibly helpful when faced with a situation. So-that's what we've been doing the past few days. Going through the potentials of what we may be faced with in the future and setting up how we might deal with them. What are the options? What do we want for our family and how can we best achieve it?

So. There you have it. Look at that...I shared! ;)

Here are a few sites with information about MS. Do some reading. Learn about it. Hopefully, be compelled to help with the quest for knowledge so we can Cure it!!!!
MS Lifelines - a Pfizer sponsored site but still quite informative without being overwhelming
National MS Society - gives you the nitty gritty truth of what MS can bring, especially from actual patients
MS Foundation


So. There you have it.
Questions? Comments? Information??
Bring it on!! :)

Thanks for 'listening'--
Mo

3 comments:

  1. I know someone with MS and she really likes her neurologist. Let me know if you'd like me to get his name. I live in Colorado. : )

    It's hard to deal with a chronic illness. My son has type 1 diabetes and at times it is so challenging. Way to have a positive attitude. Thanks for sharing!

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  2. Kelly,
    Thanks! We'd love to get the name from you. I'm a huge fan of referrals. Especially since we don't know any providers up here. If we were back in NM, we'd be set as I worked at one of the hospitals and had my own neurologist... ;)
    And yes, dealing with chronic illness is very difficult. I can't imagine dealing with diabetes. My heart and thoughts definitely go out to you. As for our attitude...I realized in re-reading the post that I didn't convey our outlook or the some of the effects of this struggle very well. I'll add an addendum. Hopefully it will help anyone else going thru stuff. Similar or not.
    Thanks again for your thoughts Kelly.

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  3. You have certainly learned to jump those hurdles! And along the way, you've inspired some of the rest of us to buck up and learn to jump as well.

    You and your family are doing well and I encourage you to continue to take things one step at a time—just like you've encouraged me :) I'm so proud of you for sharing your story and for continuing to fight through the struggles. You've inspired such strength and determination in me and my family, and I am so grateful for that!

    I hate that you guys are going through all this, but I know what a blessing you'll be to everyone you encounter along the way. Keep chugging my friend, and remember that I am here for you if you ever need me. Love you!!!

    ReplyDelete

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