Thursday, May 20, 2010

And here we sigh and smile....

Great news!

Today I saw my neurosurgeon who, as I expected, was very sympathetic to my illness. A great listener. You know the kind of doctor who doesn't interrupt you and looks you in the eyes the whole time? That's him. And he has beautiful blue eyes... Okay, don't get any ideas.

Anyway, he looked at my brain MRI from late December and compared it to the CT I had well over a year ago and....  My cyst hasn't gotten worse and my shunt is working just fine! Even better news:  he agreed with my theory that my illness is making my Dandy Walker symptoms more pronounced. I was so relieved. I was right! Everything makes sense! I also suggested physical therapy and he said that could definitely help. Now, a month ago my internist prescribed physical therapy, but I kept forgetting to pick the referral up from the office.

So I think my fatigue and balance issues are primarily disability related and not illness related. Of course, it's an illness that's causing the symptoms and I do have other issues that do count as illness/medical. My neurosurgeon's diagnosis was bittersweet: while it was nice to know he agreed with me and really nice to know that nothing in my brain has changed, this is pretty much proof that a permanent condition is affecting me profoundly. So there will be lots of opportunities for this to affect me again, after I recover from this Post-Viral Syndrome -- or whatever it is. It was also bittersweet because he doesn't know when I'll get better... I'm still thinking "If the symptoms get better." Now I can focus more on learning to cope instead of looking for an answer.

I spent the rest of the morning and early afternoon downtown, killing time before my internist appointment in the afternoon. It was a great body morning. I had a ball walking the streets in my cute sandals and big, floppy hat. I love to look beautiful when I feel good! I don't even like Sex and the City, but I found myself imagining I was walking with those four confident, fashionable women.  (Ah, the influence of television.)

My internist appointment went well. I was happy to tell her that my neurosurgeon agreed with this theory she had helped me form. Some of my bloodwork was a bit abnormal:  iron a bit low, so this could contribute to my sluggishness; Digoxin level low (again!), could explain why my heart is unruly at times; one of the thyroid tests was a bit high, but only one abnormal part of thyroid test is not enough to make a diagnosis; white blood cell count was a bit high, probably indicitive of a lingering virus, based on the asthma symptoms for three weeks and vomiting and diarrhea episodes I've had this week. So again... These are more potential explanations, but none of these tests (except Dig level) were high before. And I get blood taken probably every few months. So why the changes? I figure they're just fluctuating.

I have to talk to my cardiologist next month to ask him why the Dig level is consistently low. After my symptoms continued after he put me on Dig nearly two years ago, he said he didn't want to increase the strength because the current dosage was, in his eyes anyway, the max for my weight. Maybe the blood test will convince him otherwise. It's kind of exciting to me to think that maybe all I have to do to lower my heart rate is increase the Dig! And here we thought there were no more medication options for me! Well Dig isn't often used by doctors anymore, so maybe there are other options my cardiologist just doesn't believe in or hasn't thought of.

I feel so happy to have these leads and answers! Unfortunately, I still feel kind of sad because little Pounce had his special operation a couple of days ago and he's unhappy and uncomfortable! When I sit near him, he jumps into my lap or runs to me and lies down beside me. Aw! He's so good, though. When we take his cone off often to give him a break, he rarely licks himself and obeys when we tell him "no" or move his head from the wound. The vet called his melancholy "Post-Op Blues." I think it's also a bit of mourning: he's lost a part of himself. It's strange, though: when men get older, their changing appendages are considered a rite of passage; when puppies get older, the removal of some of this equipment is considered a rite of passage.  My babe is growing up! Ain't he cute?

When I got home from my internist appointment/allergy shot, I immediately took off my sandals. While cute and somewhat okay for my feet, given the support, they killed them! Bah, blister central. So I put the blanket on the floor in front of the vent and enjoyed the air conditioning with Pounce's head tucked in my armpit. We listened to "Forgiveness Rock Record," the new album by Broken Social Scene! I love it... They have a very fun, atmospheric layered sound and it kind of reminds me of a bunch of friends jamming in someone's basement. I love the drums and brass! Check it out!!! It's great music for a lazy day with a pup. I also bought The New Pornographer's latest "Together," but I haven't listened to it yet because, in true Ashley fashion, I have become obsessed with an album and am playing it so incessantly that the NP album doesn't yet have room in the part of my brain that loves music!


  1. I am glad to see that you seem to have had a good day. I hope you are not going through any financial hardship...I think you have insurance, right? I will pray for you that you can get through all this.

  2. Hi Ashley, I am praying for you to find answers to your health issues AND a healing.

    Yes your puppy is sooo cute. What a sweetie. Thanks for stopping by my blog shack. you're welcome anytime.


  3. Our little dog was neutered the day we fetched him from the shelter, when we adopted him. He looked so forlorn and sad and small... well once the anaesthetic wore off he made it is mission in life to get the cone off his head. It took him about half a day to figure out out to do it, and another day (of us constantly putting it back on him) to destroy it so we couldn't get it back on him!
    Once it was gone he seemed much happier with life... I don't think he ever realised that he was missing anything of himself, LOL!

  4. Ashley, sounds like you are a fighter! I am sad at your medical complications and the unknowns. You are a strong woman, thanks for sharing.

  5. Ashley, I am so relieved for you! And yet,... Sigh. There still aren't any really easy answers yet, are there? I hope you find a great PT - I've had a couple that were awesome and changed my life. Also, I'm really happy that you seem to have super-supportive and helpful doctors. That's something I'm having a hard time finding lately so I'm envious :)

    And seriously? That is one CUTE dog!

  6. Thanks Joe! No, I'm in no financial hardship. My family gives me all I need! I have insurance for drugs and things, but I live in Canada, so appointments and tests are covered by the government.

    Teresa, that's so sweet... I would love more answers and some kind of treatment for sure... Physical therapy and rest are the way to go! Thank you! Pounce is adorable. He made me smile after yawning just now. I will visit your blog again!

    Terri, that sounds like one clever dog! Pounce seemed more uncomfortable because of the wound than the cone... We don't have it on him much. We watch him instead. He's a good boy and doesn't try to lick it much.

    JeMa, thanks for reading and saying I'm strong! My situation makes me sad sometimes too, but I'm so grateful I'm not in any danger!

    Danine, thanks for your relief! I'm glad my hunch was correct, about the DW playing a role. Yes, doctors can be frustrating, but mine have been so great! I'm actually kind of excited about PT! Thanks for the insight about how valuable PT can be! Thanks... Aw I love my Pouncey...

  7. What a relief nothing has changed on the CT. That's has to be a weight off your shoulders at least.

    I hope you can figure out the heart thing. That has to be uncomfortable. The times when mine flutters a bit is bad enough and that's not very often at all.

  8. Achieve -- the most recent scan is an MRI. I was relieved it didn't show any change, but I wasn't worried there would be. I wanted my neurosurgeon to compare it to the older scan just as a precaution. I'm just ruling things out at this point. And yes, figuring out my heart thing would be nice... It's so good so often that it doesn't even seem worthy of my time or my doctors' time! Thanks so much for your support!