Tuesday, February 26, 2013

Long Time, No See...

Warning: This is a loooong one.


Hmmm. Not the most inspiring or informative post title, is it? Yeah. I didn't think so either. So, where do I begin? Well...

First, please know that I never expected or intended to be MIA for such a long time, especially without any kind of explanation.



There's been all kinds of insanity since the "quick update" I did back in October and I've been trying to get it all together in a post that wouldn't evolve into a short novel. (this is at least the fifteenth draft that I've written) There's a long and a short to most explanations and I guess in this case, the short version would be that I was stressed beyond my limits and I just checked out for a while. No blog, no Facebook, no Pinterest. No interwebs. Period. I didn't even check my email.

Yeah... I know that isn't exactly an optimal way to react to stress, but I really didn't choose to do it that way. My brain and my body pretty much made the decision for me. And when I finally did open up my dusty laptop, (in just the past few weeks, actually) I had a boatload of email to sort through and social networks that were sprouting cobwebs. Amongst the emails I received, there were quite a few notes from friends, (blog and off-line, alike) wondering where I was and asking if I was OK. I feel terrible that I didn't see them sooner. So, for you wonderful folks, I'll do my best to keep it short... er... ish. Well, I'll try. But I don't dare make any promises. ;~)

If you'll kindly indulge me for a moment, I'm gonna jump ahead a bit in my timeline and then go back from there. On the 17th of November, we lost one of our beloved furry kids ~ my sweet boy, Monkey. Some of you might remember him from past posts, either here or on my other blog. He'd been diagnosed with diabetes a couple of years ago, but he was doing well in that regard, so his passing was a complete shock. He never showed a single sign of being that sick until late the night before. I stayed up all night with him and we called the vet first thing in the morning. He passed about 10 or 15 minutes after arriving at the vet's office. She said it was congestive heart failure. We never saw it coming.

My Buddy
Don't get me wrong. I love all of the "furry kids" that have come into my life, but Monk, well... he was my buddy. He was the most loving, sweet little soul on this earth and a total "mama's boy". He spent the last 13 years by my side, through (as they say) the good, the bad and the ugly. He always seemed to know exactly when I needed his gentle, quiet presence. Even now, after 3 months have gone by, it feels as if it happened yesterday. I miss him. Every day. Terribly.

Ahem... before I'm not able to continue this, (yet again) let's move on, shall we?

So. Those of you who've been hanging around here from day one, might recall that I've been living with chronic illness(es) for about a decade. Well, as it is with the majority of folks in that category, I've been diagnosed with a laundry list of "conditions" over time and have an equally long list of symptoms, that in the last four or five years, have led at least 2 of my doctors to believe that something "autoimmune" is going on. (Based on the copious amount of reading I've done on the subject, I've thought so, too)

I've been poked and prodded, zapped and scanned and stuck with needles more times, by more doctors, nurses and technicians, than I care to count. With every appointment, test and treatment, it's been like a decade long revolving door of emotions, from relieved to confused and more often than not, tremendous frustration. To add to the mix, I live with a significant level of daily, physical pain. Let's just say that stress, at any measure, is NOT a good partner to pain.


What was causing the added stress? Well, for starters, by the middle of the summer, it had become clear that something different was invading my day to day existence. Something more. Brand new symptoms began to rear their ugly little heads and after what I assume was a bad "flare", (I lost over 30 pounds without dieting, started experiencing more frequent and intense fatigue than usual, had a major increase in joint/muscle pain and oh yeah ~ joy of joys ~ my hair started falling out... by the handful) my "regular" doctor decided that I needed to go back to a rheumatologist that I've seen a few times in the past. In order to get some idea of what was going on before I saw this specialist, my doc ordered some diagnostic blood work. A week later, (the day before we lost our sweet Monkey) he gave me the results and forwarded copies to the specialist in NY City.

At the moment, the signs seem to point to Lupus. Lupus is one of a group of diseases where the immune system becomes over-active and starts attacking your good cells and healthy organs. It's notoriously difficult to diagnose and no two patients are exactly alike. In the past, there's been one specific test that has consistently kept the specialists I've seen, from definitively diagnosing me with it. It's a blood test that looks for something called a "positive ANA" result.  Even though I've had many of the other positive or elevated markers that are commonly seen in Lupus (some are listed and explained here) and I have a veritable textbook list of the corresponding physical symptoms, this ANA result has always come back negative in previous labs. Without that positive ANA, most specialists are hesitant to prescribe the medications used to treat diseases like Lupus, primarily because of the gnarly side effects that come with them. ie., chemo drugs and steroids. (I totally understand why that is and I agree completely, btw) So, what changed?

This time, the ANA test that my regular doc ordered, came back positive. And now, I've had a second positive ANA from the labs ordered by the NYC rheumatologist.

I've seen this doc in NYC twice in the last two months. I went down in mid-January and he scheduled a follow-up appointment for last week. He ran his own huge panel of labs at the first visit and my appointment last week was set to discuss the results of those tests. So... What did I find out?


Well, as I mentioned above, the second ANA test also came back positive. As did all of the other markers that showed up before. Other than that, I know bupkis. He asked me most of the same questions that he asked last month, brought me back in the exam room and poked and prodded me some more and when we went back into his office, he just said, "come back in six months" as he stood up, shook my husband's hand and thanked him and my daughter for coming. Huh?? (Insert loud, primal scream here)

That's 5+ years of textbook symptoms, 2 positive ANA's, more new symptoms, just in the weeks since I saw him in January and still... no answers. Not even "Well, it looks like it might be Lupus", or "Gee, I'm still not 100% sure, but we should know very soon." Nada. Nothin'. It was as if he was seeing me for the first time, instead of the hour and forty-five minute exam just three weeks before. The three of us walked back to the hotel in silence. I think we were all a little too stunned to really say anything.

It's beyond frustrating at this point, because if it is Lupus, that scares the everlovin' bejeebers out of me and frankly, I'd like to know sooner, rather than later. Lupus is the kind of disease that has as many incarnations as there are diagnosed patients and the prognosis' can range anywhere from relatively manageable to terminal. Yes, terminal. Where it goes from here, is a mystery to me. I have an appointment next week with my regular doc and I hope that he can make some sense of it all. Knowing how he's felt about this from the beginning, I have a sneaky suspicion that he's going to be as bewildered as I am. So... that's what I know, so far.

(WARNING: Mushy ALERT!)
There is one thing that I do know with total certainty, though. And that's how incredibly grateful I am that my rock, my strength, my very own knight in shining armor, has been there holding my hand through it all. With all of the insanity that my being sick has brought into this life we share, this beautiful, amazing man has never once complained. He encourages and supports me, every day. He has patiently picked up the ball and carried it when I can't, without me ever having asked. He instinctively reaches for my hand on an icy sidewalk or a flight of steps and helps me on with my coat or my shoes. He's dried more tears and calmed more anxieties, than anyone should ever have to. And after all this time, I still haven't figured out what it is that I've ever done right enough, to have been blessed with the love he gives so fully and unconditionally.

And of course there's the proverbial cherry on the sundae ~ my amazing daughter insisted on driving up to the city from Virginia, to be there for the appointment. I kept telling her that she didn't have to drive all that way, but that child has had a mind of her own since she came out of the womb. What she failed to tell us was that after driving half the night, she was heading back home that afternoon. (amidst strong protests and significant pleading from her father and me to stay the night with us, mind you)

So, yeah. This much I do know with complete certainty... I couldn't feel more generously blessed.

This arrived at my door the day after Monk passed, from my daughter and her fiance. Is there any question as to why or how much I love my family? Nah. Not at all. Not for this chick.
I didn't exactly amass a huge stockpile of recipes during the time I was away, but I have prepared and photographed a few random meals here and there, so that should help me to start easing back into a more regular blogging schedule. My posts will probably be a bit sporadic, at least for a little while. In the meantime, I'm just trying to take on each day with as much positivity and focused energy as I can and I'll keep hoping for some answers... soon.

A ginormous THANK YOU! to those of you who were kind enough (or maybe masochistic enough LOL) to stick it out until the end of this long and winding post. I promise that I'll do my very best to make sure it's the last of it's kind, for a long time to come.

Be Well,

~Mary

8 comments:

  1. Some doctors just make me want to reach out and throttle them. They might have tons of book smarts, but they sure are lacking in warmth and compassion. I am praying that your next appointment is more bountiful with information. It is the "not knowing" that is the hardest. Once you know, you can begin to deal with whatever is "out there." As you said, you are blessed with such a loving family. Your husband and daughter will help you through whatever comes. And you also have the support of many friends who love you very much. It will be okay.

    ((Hugs))

    ReplyDelete
    Replies
    1. Thanks, Rob... I know I have incredible support from good friends and I most definitely and gratefully count you as one of them. Lord knows, you've been put through the medical wringer more than once and you understand it well. I suppose it's the 'hanging in there and hoping for the best' that keeps us afloat when life throws a huge sinker at us. You're right. It will be okay. Thanks for always being so supportive, my friend!(((Hugs)))rightbackatchya!

      Delete
  2. Try and hang in there with us. I know you have a lot to deal with but you don't have to do an earth shattering post every single time and we sure want to know how you are doing! I'm extra sorry that you lost your buddy when you need him the most. In times of trouble, I still miss the cat I lost well over a year ago. Sometimes, I just say her name and it makes me feel a little better.

    ReplyDelete
    Replies
    1. Thanks, Maureen... I'm definitely hangin' in there. (or I guess "here" would be more appropriate) It helps to have something else to focus on. I've even got some posts in the works for my other blog. I know what you mean about saying your kitty's name and feeling better. Plus, Monkey's (previously) more aloof sister, seems to be "filling in for him" in a way. She's been stuck to me like glue lately, so I guess we're helping each other through it. Thanks so much for being such a dear friend. It means more than I can say. ((Hugs))

      Delete
  3. Mary--I hope you get a firm diagnosis and some medical help to east your symptoms soon! Yes, 2012 was certainly a tough year--especially towards the end. Hope you start getting back to a fairly normal routine and send out those great recipes.

    take care!
    Sue

    ReplyDelete
    Replies
    1. Thank you SO much, Sue. Yep. 2012 definitely went out in a hellacious way, but after today, things might well be shifting in a more positive direction. Right now, I am more grateful for my "regular" doc than ever before. (and I was already a HUGE fan) Thanks to him, for the first time since this insanity began, there's a plan. I have no idea where it'll lead, but it's a start. So... Fingers crossed! ((Hugs))

      Delete
  4. Well, I'm SO very sorry to hear that you've been in pain, unwell, stressed, and suffered such a loss. But I'm glad to know that things are more stable, and to welcome you back - you don't know how much you're missed! Despite everything going on, you always offer fabulous food, warmth, sincerity, happiness, humor ... I always feel as though we're in the kitchen together, sipping coffee (or Drambuie!) and chatting about life. Take care of yourself, my dear friend ... :)

    ReplyDelete
  5. Wishing you strength and saying a prayer...

    ReplyDelete

I love comments! I read every one and they truly make my day! I no longer allow anonymous comments due to increases in spam, etc. Since there are issues with G+ and Blogger Profiles mysteriously flipping back and forth, I know it can be impossible to control showing up as a no-reply blogger, but IF YOU SUBSCRIBE to the COMMENTS on this post (below) you'll get a notice about my reply via email! Thanks for stopping by and for absolutely making my day! XOXO

Related Posts Plugin for WordPress, Blogger...