Wednesday, March 13, 2013

It's St. Patrick's Blog Crawl Time! (with an update)




...And once again, I'm late. Late getting the word out and getting this year's dishes prepared. The days and weeks sure have been sneaking up on me. I can't believe that Spring is only a week away! (I couldn't be any happier about it, mind you) The snow has finally melted and I'm hoping with every fiber of my being that the last fluffy flake has fallen. At least until December rolls around again. (although I know from experience that in my neck of the woods, we could still get a surprise attack before the season is officially over)

As the day is progressing, the fatigue is grabbing hold of me, but I'll try to get an entry up at the crawl. If I fall behind too much, the good news is that I can always save things for next year's party! :~/ The really good news, is that you all can pop over tonight and check out all of the yummy recipes, the beautiful tablescapes and the festive St. Patrick's Day ideas! Just click on the leprechaun in my side bar and you'll be on your way to Kat'leen's party! With a little (Irish) luck, I might just see you there!

For those who have been wondering what's happening since the post about my last trip to the specialist in NY City, I do have some news. I won't call it good news, but there is a positive side to it. My local doctor received the report and test results from the doctor in NY and was (as I had suspected) just as bewildered as we were by the whole thing. In his notes, the NYC doctor stated that based on the significant number of symptoms that I present (and have consistantly presented) with, combined with continued elevations in certain other markers for the disease and two positive ANA tests in a row, it does indeed appear that I have Lupus. Most likely, Systemic Lupus Erythematosus (SLE). Okay-kee-dokie then...

Why this wasn't explained to me when I was sitting. right. there. in front of him, is a mystery to all of us. He went on to say, in a somewhat roundabout way, that my regular doctor should be the one to treat me for it. Again, OK... That sort of makes sense, because the city is a four hour drive (each way) and that can get pretty expensive, with the cost of gas and hotels and such. But, here's the thing; my local doctor is not a Rheumatologist. He does specialize in Physical Medicine and he is an adjunct professor, who teaches and practices at a well known medical college and hospital, but he referred me to a Rheumatologist because, well... that's the specialty that historically treats certain autoimmune diseases, including Lupus.

Anyway, the positive side that I mentioned, is that my doctor is beyond done with all of the lollygagging and dithering around that's been happening thus far and he's going to start treating me for Lupus. He's ordered a visual field test, which I've learned is a common practice before prescribing a medication called Plaquenil (cyclophosphamide). I'm still researching the stuff, so I can't tell you a whole lot about it, but here's a link to the basics, in case you're interested. I do know that in rare cases, it can damage the retina and the vision test is done as a way of obtaining a baseline for future tests to be compared to.

I've been in a bit more of a funk than usual the last week or two, because although I'm relieved to finally have a diagnosis, it's not a diagnosis that anyone would want to get... and I'm not ashamed to admit that there are more than a few moments when I'm scared half out of my wits by it. The extent or severity of this illness is unknown at the moment and as the old adage goes, only time will tell. So, that's where we are at the moment. I see long days and equally long nights, a great deal of reflection and prayer and hopefully, in the not too distant future, better days ahead. Thanks for listening.  XOXO

Be Well,

Mary

7 comments:

  1. Oh, Mary - I will be thinking of you. One of my aunts had Lupus, but managed her life quite well and she did not have access to the modern drugs. I know you are glad to finally have a diagnosis! Hope your St. Patrick's Day is wonderful!!

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  2. That doctor in New York didn't have the "bedside manner" I would want for my treating physician. I think that maybe this worked out for the best that you are actually being treated by a doctor you know and trust.

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  3. Mary, my friend, I am sad to hear your news. I just found your blog again tonight...I recently returned from a 7 month blog-free sabbatical(worked wonders for me). I call you my friend because you always left kind comments that cheered me up! My heart goes out to you as well as my prayers. My mom had rheumatoid arthritis pretty much my whole life and it made her life challenging but she never lost her joy. I pray that you will always have joy in spite of any trials you may face. Blessings, D

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  4. Mary! I hope Lupus gets a kick in the tushy from you! I am glad you have some answers and a doctor near you who listens to what you have to say--even though he is not a specialist. Good luck and I can't wait to see more yummy recipes from you. Take care.

    Sue

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  5. Mary prayers for you! I hope you will be feeling better soon. I have a few friends with Lupus, and as Diane said, they are doing well.
    Thanks so much for the shout out! The link will be open till Sunday, so if you feel up to it, crawl in!
    Slainte'

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  6. Oh Mary, I will say a prayer for you.

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  7. Thank SO much, ladies. I'm still a little exasperated by it all, but I'm blessed to have the doc that I do. He's taken excellent care of me for over a decade and I trust him, implicitly. I just feel bad that he felt compelled to take this into his own hands. He has a huge patient load and I'm sure he was hoping the NY doc would take me on for this aspect of my care. He does have a rheumy collegue in Boston that he's going to consult with, so we'll see what comes of that. As always, your support, good thoughts and prayers mean the world to me. XOXO ~ M.

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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

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