Thursday, December 08, 2016

So here's the what's what! And it sounds crazy but it's not that bad, really!

So! Here's my story of what's been going on for the past month or so. Time kind of has lost meaning here, ya know?

I am very pleased to say that the long, twisting, painful Lyme path I've been on for four years (more?) is starting to have an end that I can actually see. My mini-remissions are longer in length, I can handle the pain much better, and I can anticipate the bad days with far more accuracy. I have my blood drawn every three weeks and my levels that kept going whhhhheeeeee on a rollercoaster have been much more stable.  I save my spoons (Spoon Theory people, you with me?) and I've tried very hard not to feel like I'm messing up everyone's life who comes in contact with me. I started therapy and it's difficult, but worth it.

The typical thing is Murphy's Law is apparently a Law that is alive and well and untampered with. When the Lyme and co-infections started to regulate, other things dropped in my lap. My family has a recent history of thyroid cancer and I decided to have my thyroid checked again with a full panel. My thyroid has always been a little wiggy here and there, but then the blood work would come back normal. But when you see people you love get cancer, and your throat has been feeling.... not right for a year or so, I didn't want to ignore it.

I had an ultrasound and I have three small nodes. They are not big enough to biopsy safely and my thyroid is apparently really deep and the parathyroid is attached weirdly (?). But Rick and I were fully expecting, from our first doctor's messages, that we were looking at potential thyroid cancer. And I know that's not nearly the kind of cancer that so many of you have dealt with, but I wasn't exactly prepared. It felt so unfair to see the end of the Lyme road, even if it's still got a few hills on it, only to hit a freaking pot hole with teeth.

But wait! There's more! (And a set of Ginsu knives for 49.99 if you've read this far. Kidding.) I'm waiting to hear back from a cardiologist. There has been a heavy feeling in my chest, like my heart is too big (my thyroid was the right size so that wasn't it) and I already have mycoplasma pneumoniae from the tick, a constant cough, yucko -- so who knows. It could just be the way your body settles when you're in bed as long as I have been. I'm mellllllllting. That sort of thing. 

And the last thing (whew!) is I was diagnosed with a type of anemia (out of the blue, what's up with this???) where my hemoglobin is normal but my ferritin serum is extremely low. It's 5, and the norm is between 15-50. Basically, I don't have nearly enough stored iron, so I've been falling asleep just sitting up, passing out, lightheaded, dizzy, bumping into walls I can plainly see but smack into anyway, etc. I've got some pretty bruises! 

But really, no problem. This has a protocol! I need three weeks of infusions (once a week for three weeks) and then another blood test, but I can't be seen for my consult until Jan 4th, which really isn't that bad considering the holidays are HERE (and I'm excited because that means long nights of Trivial Pursuit with the family).  Then hopefully we can figure out which drug is chelating all the iron and I'll have the energy to get rid of some blubber I've amassed and push even harder up the next few hills of Lyme Road and C'Lyme to full remission.

And that has been my month!


  1. Great news.. happy to hear the good, praying for the not so good.. and thanks for updating us!

  2. Thank you for writing. I have missed you! You are an amazing gal, even with all your health issues your strength still shines through. Hang in there, praying for you.

  3. Eeeeh, is that MY spoon right at the top there? Hm, no, the markings are different. But, I just realized, I totally forgot to let you know I got it, so sorry about that! It sits right in front of my monitor, I'm looking at it right now. And occasionally I'll take it in both hands, take a deep breath …

    I may not be around as often on FB anymore, but believe me, I'm thinking of you often. *hugs tightly*

  4. This is FABULOUS NEWS!!! I am so excited that the hills that are what is left of Lyme are your light!!! I am really Proud of all you have accomplished and all the people you have helped and Blessed just by being you!!?

  5. Although I hate to hear of even more struggles for you (you've had way more than your share),I'm very glad to see you had enough energy to share with us. Love the fight bead, keep it up!

  6. Good news... Bad news. News is news. Always praying for you my dear.

  7. I am so glad to hear that your lyme fight is nearing the end. I sincerely hope the other health issues go better for you. You have been through a lot and deserve a break.

  8. Great news about the Lyme but the other news is distressing. What do you have to do about the thyroid nodes? Is it cancer? How do they know? Glad the anemia is an easy fix. I will be praying for a good cardiac report. This is just too much, I think you have suffered enough. Although it does look like there is light at the end of the tunnel. Your newest problems do have definitive cures. Not like the elusive devil Lyme. Hang in there.

  9. There is a Bulgarian saying: evil never comes alone. I guess the idea is to be prepared for more bad things and if they don't happen, you feel great about it. So, you've always tried to stay optimistic and fight back and I believe you will win. You just did a show, right?

  10. Lori Dear I am both saddened and encouraged from reading this post. You have challenges and even after all you have been through I am reading "hope" in your words. Hope to be healed and to move forward through yet additional challenges. I admire you and your "strength" to carry on and honor your feelings. "This too shall pass" is the most important phrase I have learned and kept close to my well-being. Healing Energy for you dear. May you enjoy the Magic of Merry Christmas and all it gives us. XO


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