Least favorite Christmas song…

I think this year it’s gonna have to be Christmas Shoes.

Anyone have any songs grating on your nerves?

More on the pain clinic.

So again, I have taken kind of longer than is necessary to post about my pain clinic appointments. I have no idea why. I find the whole situation a little depressing. I am frustrated by these new limits; not being able to walk much without pain, stand long without pain, and chairs I used to find quite comfortable I can now get so much pain sitting in. Blah blah – on to the hope and the plans.

I went in last Friday to hear what my pain doctor, Dr. D., had in store. What his treatment plan was for me. I brought Spencer along, for two reasons. 1, so he could hear the whole thing straight from the horse’s mouth and 2, he could ask any questions right then. So Dr. D said that after talking with everyone (pharmacist, therapist, physical therapist), he thought that the headaches were even more of an issue than the back pain. Yes, I said. Well, he believes he can help and would like to work concurrently on the headaches while trying to improve my back. I have my doubts, but I’m game. Of course I spent more than a year at this clinic, trying to help my headaches. There was no improvement, but lots of exploration. Dr. D says he ‘does things differently’ — he would like to try some injections in different parts of my head. Actually sounds a lot like what I did with the last pain clinic doc, but we shall see.

So that’s something I hadn’t anticipated, and while I’m not at all looking forward to the injections (they are incredibly painful), who knows? It just might help.

The plan for my back is this; start out with physical therapy and possibly onto injections (more?!). The problem appears to be two-fold, there is the herniated disc and in the same region, problems with my facet joints. I’m still reading up about this and learning what they are, what is wrong with them, etc. But they are at least part of the problem. How big a part remains to be seen. There are more options (which we discussed) for after PT and injections — implants and other scary type things. Those are off in the future if we can’t find pain relief from the PT and/or injections.

Sorry if this is rambling and/or doesn’t make sense – I slept poorly (again) last night.

His other thoughts about my headaches were…not impressive. My husband mentioned he seemed a little overconfident. I think that’s supposed to inspire confidence, but sometimes doctors actually make me feel less confident about their capacity to help. Also, the winking? What the heck. Ok, so his thoughts were that my medicines were that they were ‘random’ and that there were some that aren’t doing anything and we should discontinue some. Wellllll, subject the first, I feel like maybe he’s forgotten that he’s jumping into a 5 year ongoing situation. This isn’t new, and the reason the meds seem random are that they’ve been added by different doctors – most of them treat symptoms of the problem (nausea, sleep and pain) and not the problem itself BECAUSE we have tried so many preventative meds without success. The few that I’m on now actually help me. I just got off half a dozen meds that weren’t helping me. Pfft. I’m sure we’ll have more discussion on that later.
So then this last Tuesday I went to my first PT appointment. I like my physical therapist, she’s nice and she realizes that I have some idea of what’s going on. I have dealt with the back pain for a long time, and I feel like she understands the importance of my symptoms as well as my limitations. That said, we had our first session and she taught me a few very gentle stretches. I mean gentle, easy. I’m supposed to do them three times a day. After I got home from my PT session, my neck and upper back was hurting. Also, the headache across the back of my head (tension HA that goes with my back hurting) was worse. But I figured that maybe I just needed to keep at it and things would improve. This turned out to be wishful thinking, and a day and a half into it, I was still dealing with this extra pain. No relief; extra pain. Soooo I called and left a message for her Thursday, she hasn’t returned it yet. I decided on my own to discontinue the stretches and hope the extra pain would at least go away in time for my *next* appointment, this coming Tuesday. My neck still hurts quite a bit.

That’s it! That’s my update!

**********************************************************************************************************************

On a COMPLETELY unrelated note, have you seen the Droid (phone) commercials? I’ve only seen a few hundred. They are pretty good, as far as cell phone commercials go. I was going to put a video in,  but I can’t find one that includes the section I’m talking about. At the VERY very end, in tiny print at the bottom of the screen, it says that Droid is trademarked by Lucasfilms. Lucas trademarked the WORD droid. That is pure awesomeness. Do you think that means they are getting royalties from the sales of the Droid?

Wow.

I’m totally impressed by that.

the pain clinic, round II

Hello, internets, it’s me, Emily.

So Tuesday I went to see the pain clinic – this time for my back. And things are going to be very different this time around. Hopefully that means we make some improvements! Ha. But seriously, I went to the appointment, and my first appointment was with the physical therapist and doctor, then I had an appointment with the pharmacist.

So there was a doctor there who was interning with Dr. D (my doctor), but Dr. D. himself did not appear until later on. Apparently his time is valuable. Fair enough. There was also a pharmacy intern and a medical student. Also, the physical therapist, Tami. Of course, I put on the gown right away, and if it didn’t feel like Grand Central station before, it sure did then! They tried to keep me as covered up as they could, but basically there’s not a lot to be done. So for the first hour I was ‘evaluated’ by the physical therapist. Of course this involves testing my pain, when it appears, when it doesn’t. There was a lot of poking and prodding of my back, as well as twisting and measuring. My right leg is 1 cm shorter than my left leg! How do you like them apples? Apparently, anything up to 2 cm is still considered normal. The PT felt that the leg thing combined with the accident may be causing the perfect storm of pain in my back. No mention yet on why this started last October. I’m pretty sure we’ll never know that.

So after that, I got dressed again and we talked – she warned me that PT is very different in the pain clinic. I figured. And then Dr. D made his appearance. He went over the broad strokes of things (often making mistakes, which I corrected), and said he thought they’d be able to help me. He cautioned that he was not a pain eradicator, but a pain manager. I think he was just trying to make sure my hopes weren’t *too* high. Then it was off to the pharmacist.

The pharmacy intern took me and we went to a room with a comfortable chair. HALLELUJAH! That was the best part of this appointment. We basically went over all the meds I’m taking, why I’m taking them, when I started taking them, and how much I feel like they work for me. 90% of the pills are for my headaches, so we talked a fair amount about that.

And there it is. The appointment. I felt good about it, I’m looking forward to working with the physical therapist and hopefully figuring some stuff out. I would LOVE it if we could improve or do away with the back pain with just exercises; more or different exercises. The needles, I’m hoping to stay away from as much as possible. The pills….we shall see. The one I’m on now isn’t helping and is causing side effects. Brain fog, myoclonic jerks, etc. I want off this ride!

All the people I met with (Dr. D, the pharmacist, the PT, and the therapist) will all get together and talk about my case. Then I’ll see Dr. D Friday, November 6 to go over their plan of attack.

I’ve been too long absent

I’ve been out of town for a week (visiting my parents) and catching up at home. Finally my husband came home last night. He was on a tour of sorts, going to a conference in Brazil (I know!), Chicago, and Michigan. He’s a man in demand.

I was listening to this song the other day and found it really inspirational. I think it’s about a breakup, but parts of it really spoke to me regarding pain. It’s by Lizz Wright – a fantastic alto jazz singer. You can check her out on Amazon, I love their song previews. Here are the lyrics…

Trouble :
Trouble in the air
I don’t want it
But I have to breathe
It´s coming through the door
Behind the shadows that surround me when I sleep
Somehow I know
that I can´t pray this away
I´ll keep my head down and get up on this train
This train

I´m gonna ride this pain like a wave
Lord, make me over I don´t want to b e afraid
And when my time is come and gone
I don´t wanna be the one who can´t let go

What if I get lost
I call out to you and you don´t save me?
The water comes too close
I don´t have the time to give
what you gave to me?
Well, as long as my name don´t change, I´ll be the same
I loved you more than time
Forever can´t take that away
Can´t take that away

Just let me ride this pain like a wave
Lord, make me over I don’t wanna be afraid
And when my time is come and gone
I don´t wanna be the one who can´t let go

There is a river
Running by the train
It ain´t troubled
It´s just laying there, wading in the wind

Just let me ride this pain like a wave
Lord, make me over I don’t wanna be afraid
And when my time is come and gone
I don´t wanna be the one who can´t let go

Let me ride this pain like a wave
Make me over I don’t wanna be afraid
And when my time is come and gone
I don´t wanna be the one who can´t let go
I´ll move on

…I’ll have to give more updates later, to be honest not a lot is going on with me. I have my evaluation appointments at the pain clinic coming up (for my back). I want to stop taking Neurontin b/c of the side effects (fuzzy head, tired) but also because it’s not helping the nerve pain (coming from my back).

But I have so enjoyed having some time with family, and now I’m really glad to have my husband back. I think that’s the longest we’ve ever been apart.

a doctor’s appointment today

I had a fun day today – first my Mom came for a visit, then I went straight to my doctor’s appointment. This is my neurologist. THEN my dear sister-in-law came over to make dinner for us and watch a little TV.

So let me tell you about the doctor’s appointment. We didn’t change many things around because I just spoke to my primary care physician. PCP wanted to start me on Neurontin — for my back. I am really hoping this helps. So I start tonight, titrating up.

Ok, back to the neurologist’s appointment. We talked about my recent experiences with Imitrex and Zomig. They aren’t helping much, and I’m having side effects nearly every time I use them – nausea (even with anti-nausea meds) and pain in my joints. Weird. I told her it just didn’t feel like it was worth taking them, so I hadn’t been for the past month or so. So she said that it would be ok for me to take Lortab twice weekly (instead of twice monthly). This is fantastic, because I have hours with Lortab where I actually feel NORMAL. And I could do with more of those.

That’s all she wrote. 

Please read

As I was reading through my blogs today — and as usual, came across some thought-provoking material. Today, it’s something I wanted to share with you and make sure you knew about!

I was reading Somebody Heal Me (musings of a chronic migraineur). Today she reports on the FDA advisory panel that is recommending the removal of acetaminophen based products (such as Lortab, Percocet and Vicodin) from market. Also, extra strengh Tylenol would only be available with a prescription. She goes into more detail regarding the reasons and her concerns. I share many of her concerns. My main concern is selfish — currently, I am allowed two days per month to take Lortab. These two days are the only days I feel normal. Many chronic pain patients are in similar (or even more difficult) situations.

One main concern the FDA advisory panel has is the number of acetaminophen overdose related deaths. Of course this is a problem, and something that should be addressed. Acetaminophen overdose is the most common reason for liver failure in the U.S. I don’t believe that removing the products from market is the answer — I think that better patient education would do the trick.

What pleased me was the link she included for a petition. The petition is called Acetaminophen: Educate, Do not regulate! From their site I take this information:

“The U.S. Food and Drug Administration (FDA) is considering advice from its Advisory Committee that would eliminate all prescription acetaminophen combination medications (like Vicodin, Percocet) and take the 500 mg (extra strength) dose of acetaminophen (the medicine in Tylenol) off store shelves and make it available only by prescription. These changes could negatively affect people suffering from pain who rely on these medicines every day.  The FDA must consider all comments received by September 30, 2009 that are submitted to the official docket for this decision.  Please sign the petition letter by September 27, 2009 and the American Pain Foundation will submit the petition to the FDA.”

Please, if you agree with this, visit the site and sign the petition. It takes only a few minutes.

Invisible Illness Meme

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: migraines and back pain

2. I was diagnosed with it in the year: 2000 and 2009, respectively

3. But I had symptoms since:1986 and 1995, respectively

4. The biggest adjustment I’ve had to make is: doing less – less of everything, and resting more.

5. Most people assume: that migraines are just a bad headache; I think most have never heard of someone having migraines or headaches everyday. (You’re too young to have chronic pain!)

6. The hardest part about mornings are: the pain before I eat and take my breakfast pills.

7. My favorite medical TV show is: House. Not for the medical part of it, but for the humor.

8. A gadget I couldn’t live without is: ice packs and heating pads.

9. The hardest part about nights are: staying asleep.

10. Each day I take __ pills & vitamins. (No comments, please):  18. Many of those are the same pills repeated.

11. Regarding alternative treatments: Ihave tried many and all have failed. I feel alarm bells going off when alternative practitioners ‘know’ they can help me. This hasn’t been the case at all so far.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. I can choose who to tell and who not to, and I can try to look and act as normal as possible. In some ways it seems that visible illnesses are given more credence and are more widely understood. But at some point you have to realize that whatever people think about me or my pain, they can go fly a kite, because I know my body and have to live with it.

13. Regarding working and career: I feel like my life has taken a huge detour — I planned to be a piano teacher after college, and have so far been unable to realize those dreams. It is very difficult to play and would be even more difficult to teach and listen to children playing.

14. People would be surprised to know: I’m not always happy and cheerful. I didn’t choose this life, and I’m just trying to make it through the best I can. Friends and acquaintances are always saying ‘You seem so cheerful, so happy. You never seem down and I forget that you’re in pain.’ It’s just not true. And thankfully my family and closest friends know this. They know I’m not Superwoman, and I”m not trying to be.

15. The hardest thing to accept about my new reality has been: sitting out and waiting and resting. I want to be doing, be in the middle of the action, listening to loud music…you get the idea.

16. Something I never thought I could do with my illness that I did was: …this was the hardest question. I feel like I haven’t turned a major corner yet. But recently, with my back pain, I was pleasantly surprised with how well my driving vacation (to Oregon and CA) went.

17. The commercials about my illness: are annoying and make me wish more real information was being spread, instead of ads for medications. It also makes migraines seem much simpler to treat than it is for some of us.

18. Something I really miss doing since I was diagnosed is: playing the piano for as long as I wanted.

19. It was really hard to have to give up: listening to music as loud as I wanted to. Also, chocolate.

20. A new hobby I have taken up since my diagnosis is: crocheting, making jewelry, and blogging!

21. If I could have one day of feeling normal again I would: play the piano, have a fun dinner with friends, clean, go out dancing and/or to a symphony concert.

22. My illness has taught me: doctors don’t always have the answers, sometimes answers take time, everyone is struggling with different issues — we just don’t always know it.

23. Want to know a secret? One thing people say that gets under my skin is: What do you do? It’s something I just need to ignore, but meeting new people, I hate this part of the process…I have to tell them I’m not going to school, I’m not working, I have these headaches and etc….it just changes the tone of the conversation, and they feel bad for me. So not what  I”m after.

24. But I love it when people: hug me. Talk to me about their lives and their loves. Even though I have not a lot going on, I do have some things going on, and I love to talk about books or movies.

25. My favorite motto, scripture, quote that gets me through tough times is: Phil. 4:13, I can do all things through Christ which strengtheneth me.

26. When someone is diagnosed I’d like to tell them: to treat yourself kindly, to watch out for rebound headaches, do research on your own and don’t just listen to what the doctors tell you, there is a lot of comfort to be found from online communities.

27. Something that has surprised me about living with an illness is:how quickly time seems to pass me by.

28. The nicest thing someone did for me when I wasn’t feeling well was: there have been many – times my mother or MIL scrubbed my tub, times family or friends from church brought me meals.

29. I’m involved with Invisible Illness Week because: too often it is assumed that if it can’t be seen it isn’t real, it’s made up or imagined.

30. The fact that you read this list makes me feel: hopeful for the future. I hope people will get a better idea of what it’s like to walk my path and maybe try to learn more about diseases they don’t know about when they encounter them.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

Tidbits from Labor Day weekend –

– Friday night Spencer worked late and we rented a Redbox. Low key.

– Saturday night we had a BBQ with most of Spencer’s sibs. It was big fun and Spencer tended the grill (jointly) for the first time.

– Sunday night we had dinner with friends. Love these guys – it is always good food and lots of fun. Wish we still lived in the same town together!

– Monday I went to the Park City outlets with a few sisters-in-law. AND one brave man who accompanied us. Shopping, yes please. Ah how I enjoyed myself. The shops were so busy (since it was Labor Day and all) and vending machines were out of water. Whoa. Finally we happened upon a drinking fountain and I could refill my cutsie bottle. I got Spencer a hoodie and me a tote bag from the Gap. I also got myself two fantastic shirts from Banana Republic. Am looking forward to wearing them.

That is a busy weekend for me. I was bushed yesterday and did nearly nothing.

Onward and upward!

A discussion of hot and cold packs

Another step away from vacation coverage. To discuss hot and/or cold packs. I’ve known a few in my day. And of course, there is one that’s risen above the rest. My favorite is this one. I just ordered another, so I don’t have to use the one I have so judiciously.

mmm...icey for my head!

So you can see what it looks like, but let me tell you about how it feels:  it sits over the eyes and has an elastic band to hold it on your head. Inside it has what feels like round plastic beads inside a stretchy cotton fabric. One of the best parts of this pack is that there are Xs sewn where your eyes go. This makes it so the weight of the pack isn’t pressing on your eyes while you’re sleeping. Or trying to sleep. Also, it stays cold longer than any of my others. I don’t know why.

I know some people prefer heat for their headaches/migraines. I can’t even stand the thought of it. But tell me — do you like cold or heat – and what’s your favorite pack like?

**P.S. — Did you notice my new widget on the sidebar? It says Spencer’s Photos? That’s a widget my dear husband made, pretty cool right? It can pull photos from whatever site you want. If you are interested in downloading it (and use wordpress), go here. It’s called RSSPhoto.

Vacation coverage continues!

Welcome back! This is in Shore Acres park on the Oregon Coast. Here was my favorite part of the park, there were calla lilies growing around this pond. These are my favorite flower, I used them for my wedding. So graceful!

In that same pond was this lovely set of sculptures. Ibis? I don’t know. But they are lovely.

And in the same pond (sorry) were these amazing water lilies – so PINK!

Now, it’s kind of hard to see her, but my Muum is seriously checking out this tree, trying to discern its name. But from this angle, I thought it looked an awful lot like she was holding it up. She didn’t even know I took it – oh snap!

Here is the coast at the Shore Acres park – beautiful. There were sea lions, but I didn’t want any pictures of them.

And here’s another view. Beautiful.

This was at a grocery store in Oregon. I was a little…taken aback? By this blatant generic take on Dr. Pepper.

Apparently Safeway’s. Whaaaat? More coverage to come.