Another update

July 28th, 2010

Hello lovely readers – is anyone there?

I’ve been telling you about the Occipital Nerve Stimulation (ONS) and how that was the next thing I was planning to try. Well the approval finally went through & my trial has been scheduled. The wires will go in on August 5th & we’ll try it out for a week or so. After that, we’ll see! Where we go depends on if it helps or not.

I am hopeful and really just can’t wait to get the trial started, to know if it will help or not.

(Paris pictures coming soon…really!)

A little of this and a little of that

June 6th, 2010

So a few things have happened these past weeks – I’ve been kind of processing the more important things, and so nothing has been reported on my blog.

First of all, I went to see my neurologist on May 4th. We didn’t change much because I was going to see my pain doctor the next week (and the pain doc and I are working on making changes). My neurologist and I did work out a way for me to have magnesium infusions. I first had magnesium infusions back when I was inpatient at Chicago. What was fantastic about magnesium was that there were no side effects but it entirely took away my headache pain. Fantastic, right? Right. Unfortunately, I haven’t been able to duplicate the results with oral magnesium. ANYWAY, back to the infusions. I was hoping I could use the infusions for those tough-to-break migraines.

And so I found myself at the hospital, in the infusion center on the next Monday. And somehow, for some reason, it didn’t work. I went with a normal headache – not even a particularly tough one. Soooo that is probably a no go from now on.

Then Friday the 14th I had my appointment at the pain clinic. I had a horrible night’s sleep the night before and so found myself trying not to puke in the office. The great thing is that I didn’t, and just laid very still.  :)   I wasn’t in the best of moods when my doctor came in (one HOUR later) — but we went onward and upward. We talked more about the RFA procedure, and I asked him where he was with the insurance company. He’s called 4x and said he waited on hold for 20 minutes or more each time. *sigh*

So we talked about where to go from here – he felt like if we went through with the RFA and I got 50% pain relief (best case scenario), we’d still be working on something else to take care of the last half. And so the last resort has arrived. He says that if I were his sister, he’d recommend going the route of the Occipital Nerve Stiumulator. This video explains spinal cord nerve stimulators, which are the same idea. Spinal cord stimulators came first, and then they started to be used for intractable headaches/migraines in the cervical area. We’re working on scheduling a trial, and from there the real decision making will begin. OR it might just not work well enough, in which case some other decision making will have to take place.

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In other news, we just got home from Paris a few days ago. I would’ve loved to have told you about it, but then I also am paranoid and don’t want people finding us and burgling us. So I will tell you now, after the fact. Spencer & I went to Paris – we were there for 9 days. We were able to go because he had a poster at a conference there; and after going to other very fun places in recent months, he has saved up enough frequent flier miles so that my ticket was paid for! Yippee! It was very fun, and I will post pictures/details soon.

Anticlimactic

April 20th, 2010

So after all that, we didn’t actually do the RFA procedure today. I know! I can hardly believe it, myself.

After looking at my diagnostic results, my doc said that my insurance wouldn’t cover the procedure. Of course, they haven’t rejected it, so we have to work with them on the whole thing. Get a rejection, appeal, get their approval, whatever.

So, long story short – no RFA today. Hopefully RFA in the future. Even though the insurance company won’t cover it, my Dr. believes that it could have some real therapeutic benefit. Would it get rid of my headache? No, probably not. But it could cut a lot of pain out. So we proceed forward in trying to get coverage.

Meanwhile, we reviewed previous medications (from my stint a couple years ago @ the pain clinic), and are going to try out a few things that may or may not help. So for now, we try another long-acting opiate drug, to see how that pans out.

I’ll let you know when I hear more about the procedure. Thanks for your support!

All systems go…

April 19th, 2010

Well tomorrow is the day for my RFA. Spencer’s coming with me, and is looking forward to watching them poke me with needles. I’m hopeful and yet trying not to expect too much.

Please keep me in your thoughts tomorrow morning at 8:30 a.m. I’ll blog about how the procedure went as soon as I’m able.

Here’s a video that makes me smile. I’m a pianist, and love music, so it may make me happier than most. But here is a fun video about music and taking the stairs…

2nd diagnostic today

April 6th, 2010

Well today I’m going to make a more timely update.

Today was my second diagnostic at the pain clinic. This is a diagnostic for the possible radio-frequency nerve ablation. Today we did the same procedure as last week *except* they used long-acting anesthesia instead of short-acting anesthesia. Today it went better than last time, I think because I knew how difficult  it would be. Last week I wasn’t expecting it to be so painful. I’ve had some sustained pain relief today – not all the pain, and (again) not as much relief as I expected.

Maybe the theme here is that my expectations are too high?

I’ll call the doctor later this week and tell him the results of the procedure. From there he will help me to decide if that amount (and duration) of pain relief is good or not. That is, if the results would indicate success for the RFA or not. I’ll update when I have that information and have made a final decision.

procedures continue…

March 30th, 2010

This is an overdue update. I had a procedure done a week ago at the pain clinic.

We are continuing to try and fix the old noggin. Given the (admittedly limited) results from injections into my head — we’re working towards my neck, where these nerves branch from. The big nerves we were injecting were the third medial nerve and the nearby occipital nerve. We did diagnostic injections on both sides of my neck. They had to put an IV in because ‘we have to put in an IV anytime we’re putting needles in your neck’. Sounds like a good plan to me.

So I was ready to go and we started with the pokin’. First they put a little local anesthesia. And then they put in some contrast dye so that they could see the nerves clearly. Then some local anesthesia (short-acting) into one nerve and then the other. It was more painful than I thought it’d be. Then we repeated that on the left side. I was glad when it was over.

I had less pain relief than I thought from it, but there was some definite relief.It lasted a few hours and then faded as the anesthesia wore off.

So back to where I said it was diagnostic – we’re doing another diagnostic procedure (same injections, long-acting anesthesia this time) in another week. These are required to find out if the radio-frequency nerve ablation would likely be successful for me.

Meme from Blackbird

March 16th, 2010

Two things for you today. First, since I cannot keep a good thing quiet, is the link to a fantastic recipe. It’s a chicken pot pie, and one of the best I’ve ever had.

Second is this meme – I stole it from Blackbird. Let me know if you do it – for some reason, I continue to enjoy doing these. I’d have thought the appeal would wane, but no!

This one is a one word challenge –

Cell phone? Red

Hair? Brown

Mother? Loving

Father? Musical

Favorite Food? Sweet

Dream last night? Wacky

Drink? Water

Dream/Goal? Music

Room you are in? Living

Hobby? Jewelry

Fear? Ferris

Where do you see yourself in 6 years? Mother

Something you are not? Athletic

Favorite Muffins? Cranberry

Wish list item? Shoes!

Where did you grow up? Ohio

What is the last thing you did? Iced

What are you wearing? Pajamas

Favorite TV Show? Office

Pets? None

Friends? Yes

Your life? Blessed

Your mood? Happy

Facebook? Yes

Favorite place to eat? Indian

Missing Someone? No

Your vehicle? Honda

What you aren’t wearing? Earrings

Favorite Store? Gap

Favorite Color? Blue

Last time you laughed? Minutes

Last time you cried? Sunday

Best friend? Spencer

Place you go to over and over? Library

Cooking…

February 24th, 2010

Well friends, I have a question for you all! I like to cook – maybe liked to cook is closer to the truth?

The last year I’ve had a really hard time cooking DINNER because I can stand for 10 minutes, but 15 minutes of standing and my back is starting to spasm.

So I’m hoping that you, my friends, will have some great ideas for me. I can do some prep and then put it in the oven, but most of the recipes I know and have used in the past are prep and then standing over the stovetop for 20 minutes or so.

I know you’ll come through for me, right?

*fingers crossed*

Books of 2009

February 19th, 2010

    I kind of forgot about this list – but then I found it again! Here are all the books I read in 2009, in general chronological order. And of course I had to look at last year’s post along the same lines. It looks like I read fewer books in 2009, which surprised me. And I have to mention a few favorites; the Uglies series, The Time Traveler’s Wife, A Christmas Carol, and Unexpected Blessings.

    If you want to read my thoughts on each book, find me on goodreads.com! I’d love to be friends. Goodreads is awesome because I get so many ideas for books to read. And more importantly, I have a list so I don’t forget what I want to read!

    1. Papa Married a Mormon
    2. Mamma’s Boarding House
    3. A Much Married Man
    4. Giovanni’s Room
    5. The Red Badge of Courage
    6. Life is Just What You Make it: My Story So Far
    7. False Impression
    8. The Importance of Being Earnest
    9. A Christmas Carol
    10. The Code of the Woosters
    11. Mozart’s Ghost: A Novel
    12. The Center Cannot Hold: My Journey Through Madness
    13. Uglies series
    14. Pain Free: A Revolutionary Method for Stopping Chronic Pain
    15. The Strangler
    16. No Country for Old Men
    17. Something Borrowed
    18. Black Boy
    19. But for a Small Moment
    20. The Body Broken: A Memoir
    21. The Wednesday Letters
    22. The Time of Our Singing
    23. The Killer Angels
    24. Three Cups of Tea: One Man’s Mission to Promote Peace…One School at a Time
    25. Patience With God: The Story of Zacchaeus Continuing in Us
    26. Unexpected Blessings: Finding Hope and Healing in the Face of Illness
    27. Pay It Forward
    28. Inés of My Soul
    29. To Siberia
    30. The Lost Garden: A Novel
    31. The Westing Game
    32. Thirteen Reasons Why
    33. The Time Traveler’s Wife (a re-read)
    34. A Tree Grows in Brooklyn
    35. The Wet Nurse’s Tale
    36. In Cold Blood
    37. Speak
    38. Their Eyes Were Watching God

      A very strange day, indeed

      February 17th, 2010

      Well yesterday was such a crazy day, I had to write about it. No pictures, you’ll thank me later.

      I wanted to make some crystallized ginger. It is SO GOOD in ginger cookies, and it is also really expensive. So I was thrilled when I found this tutorial for making it at home!

      I began peeling — this took a while, as I figured it would. During the peeling, I managed to peel off a little skin from my knuckle. Oops! But got a bandaid on that and stuck a fork into my ginger while I peeled it — keeping it further from my hands. This worked great. Finally it was all peeled, and time to cut up the ginger into smaller pieces. I had a few done when all of a sudden I cut part of my finger! It is my left ring finger and I cut part of my nail and some of my skin. My stomach sank and I started feeling nauseated. It started bleeding.

      Iwent to get a rag and covered it, put pressure on the cut, yadda yadda. Now I started feeling dizzy. I was worried I was losing a lot of blood and decided I’d better call my husband – I didn’t know if it needed stitches, and couldn’t get a good look at the actual cut. I called my husband and he said he’d call some of our neighbors, because it would take him 1/2 and hour to get home. I hung up with him and was feeling really dizzy now. I knew I should sit down. On my way to doing that, I hit my head on the corner of the fridge and passed out. I came to in the dining room (no idea why or how I got there) and was feeling yucky. I had that cold sweat come over me, and I started out to the front room with my shoes (in case I needed to leave?), when I lay down and puked on the floor.

      I can’t remember the last time I puked and DIDN’T puke in the toilet. So that was weird, and gross. A few minutes later Spencer called back to say that our neighbor was coming over. She’s a nurse. I told him I didn’t think my cut was that bad — didn’t seem to be bleeding anymore. I also told him (I think) that I passed out and threw up. He said he was coming as quickly as he could and that I just needed to let our neighbor (let’s call her C) in when she knocked.

      C came in and got things taken care of. She looked at the cut and said it’d be fine – then wrapped it up in the rag again. I couldn’t believe the nonsense that this cut had caused, especially when it wasn’t even a bad cut. She got me up on my couch and laying down – gave me ice packs for my head. I was starting to feel better. Then she proceeded to clean up my puke. Yikes, I tried to tell her to leave it and my husband would clean it up when he got home. She said, ‘No, no, I’m a mom, this isn’t a big deal.’ What a sweet neighbor.

      And so – I apparently don’t like to see my own blood. Learn something new everyday, right?