Expectations and Recovery

Expectations...
Mine or others'?
Pressure from the inside...
and the outside...
I feel lost in my own life,
and I'm scared.
My body is in so much pain,
but my mind and emotions are in just as much turmoil.

Those around me seem to think that this surgery/device is some kind of "magic bullet" that's just going to make all of the pain go away. It's a blessing, yes... but it doesn't (and most likely isn't going to) completely eliminate the pain...

The neurostimulator trial resulted in a 4 or 5 day stretch without any debilitating migraines. I was able to do more, but I still had pain and restrictions/limitations... not to mention, the trial was less than a week long, so you can only tell so much. It is my hope that the permanent device (which I've now had in for 2 weeks) will reduce the pain to a manageable level, but I don't expect it to prevent me from ever having another migraine. That just seems like wishful thinking. If it happens, I would be forever grateful... but I know that it's a long shot.

I find myself trying to balance optimistic and realistic outlooks regarding my health and recovery. I hate the pain, the racing thoughts through my head, the assumptions and expectations of those around me, and the uncertainty of what is to come.

Recovery has been more difficult than I anticipated. I've had a few migraines, even with the device in/on. It scares me to be experiencing those all-too-familiar migraine symptoms that I can definitely tell are not surgical pain. Others just try to tell me:  "the surgery wasn't that long ago" and "the migraines will go away once I heal from the surgery." I just want to scream at them sometimes! Just because I had this implanted, doesn't mean that I'm never going to have a migraine again. Going from daily migraines to never having a migraine is extremely unlikely, to say the least. Then, I get to hear that I just don't have the right attitude or enough faith. I just can't handle it right now! I don't even know...

This post has taken me several days (perhaps a week ... time has kinda gotten away from me) to write. It's been an up and down battle with pain and dealing with the expectations that I have for myself... and that others have for me. For the first time that I can remember, the expectations that others seem to have for my recovery weigh on me more than my own expectations. I've always been much harder on myself than others are on me, so this is a strange feeling. I feel, again, like people just aren't listening! They cherry-pick what they want to hear or believe and ignore all else. They seem to have decided in their heads what this treatment is going to result in, and that is the only thing they will believe... regardless of whether or not it turns out to be true or false. I hate that it doesn't matter what I say to so many people... they're going to believe whatever they feel like believing. It's so frustrating, right now!

Post-Surgery Update

I know that it has been a while since I last posted. THANK YOU to everyone for all of your thoughts and prayers. I really appreciate them, especially during this time.

My surgery went well (12/22/10). It was preceded with many days of migraine pain and continuously increasing anticipation and irritation. The only thing I remember in the operating room was a song that was playing (they had asked what my favorite type of music was - contemporary Christian) - I Can Only Imagine by Mercy Me. It's one of my favorite songs, and it's so fitting...

I Can Only Imagine by Mercy Me

 

My parents and husband were there for my surgery, and then my husband stayed overnight at the hospital with me. We actually slept for a while, and then were up during the wee hours watching a comedian (Nick Swardson - highlight reel below) that was HILARIOUS! The nausea and pain were up and down after the surgery, but the pain hit horrible levels during the middle-of-the-night hours at the hospital. I had pain meds via IV, pills, and a shot in my leg. I was finally able to sleep for a few hours. I was released from the hospital on Thursday morning. 

Nick Swardson - Highlight Reel of "Seriously Who Farted"

(WARNING:  bad language)

I spent most of the first week after surgery resting. I didn't make it to all of the Christmas festivities, but Jeremy and I were able to celebrate together with our immediate families (thank goodness they live close to one another).

The pain has been more than I expected, and was at times UNBEARABLE... something I didn't expect. I think I prevented myself from thinking about how serious and "big" the surgery really was... as a defense mechanism. And, now I'm trying to recover from it.

I have 4 leads (2 in my forehead and 2 in my neck), which are connected to a battery in my right hip. The battery has been extremely sore/tender the past few days. I'm working on range of motion in my neck, and really just getting used to having this thing in my body. I've had a lot of surgical pain, but HUGE reduction in migraine pain.

I'm so thankful that my husband has been able to be here to take care of me. I've needed him A LOT through this. The emotional side of recovery is just as difficult as the physical, so it's a blessing to have him here with me for a while (before he has to head home to return to work).

I'll try to start posting again, once I recover more. It has just been difficult with the pain from the surgery. But, I hope everyone had a wonderful Christmas. And, I hope we all have a better year than the last. BLESSINGS!

Strong Enough by Matthew West

I came across this song tonight. It is when we are at our weakest that the Lord is strongest. When times are extremely difficult, we are brought to our knees... take these times to recognize your own weakness and the Lord's strength. He is our rock and our redeemer. The words of this song are so powerful. They are the prayer my heart longs to say... Lord, right now I'm asking you to be strong enough... for the both of us. Amen.


Strong Enough by Matthew West

You must
You must think I'm strong
To give me what I'm going through

Well, forgive me
Forgive me if I'm wrong
But this looks like more than I can do
On my own
Chorus:
I know I'm not strong enough to be
everything that I'm supposed to be
I give up
I'm not strong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
For the both of us
Well, maybe
Maybe that's the point
To reach the point of giving up
Cause when I'm finally
Finally at rock bottom
Well, that's when I start looking up
And reaching out
Chorus

Cause I'm broken
Down to nothing
But I'm still holding on to the one thing
You are God
and you are strong
When I am weak

I can do all things
Through Christ who gives me strength
And I don't have to be
Strong enough
Strong enough
(Repeat)

Oh, yeah

Chorus

LTD and Doctors

So, I've been having a horrible case of anticipation/anxiety about my upcoming surgery. It's showing up in my mood and sleep disturbance (i.e., terrible insomnia). I woke up yesterday with a horrible migraine, and then listened to a missed voicemail that spun my day even more out of control...

My long-term disability (LTD) carrier is currently reviewing my claim to determine whether or not they're going to extend my LTD benefits. The nurse that's reviewing my claim called me because they had received information from my headache specialist/neurologist regarding potential for improvement and release for return to work date. My doctor mentioned the former, but not the latter, at my previous appointment with him (at the end of October). Apparently, he put a release for return to work date as 11/29/10!!! WHAT?!?!?! Are you kidding me?! Yes, my permanent neurostimulator was supposed to be implanted on 11/16, but that would only allow 2 weeks for recovery. 2 weeks!!! The doctor that is doing the surgery told me to expect at least a 6 week recovery time. Heck, it took me most of the time I had the trial in (a week) to even start to heal from that... a more minor procedure.

Once I recover, the process isn't done. It's NOT a magic bullet! I'm SOOO sick of everyone thinking that this neurostimulator is going to be implanted and everything is just going to be peachy. Okay, it's possible... but not probable. I'm still on all kinds of meds. So, whether I get off of them or adjust the doses, there's a process of medication adjustment after the surgery recovery.

Why on earth would my doctor even put a date on the form? He's been asked this question on millions of forms for me over the last 19 months. He normally responds by saying something like:  "expected return to date - 6 months, but will have to re-evaluate at that time." I called my doctor's office and expressed my frustration with the situation. I'm still going to bring it up with my doctor at our next appointment (in January) because it really ticks me off!

I didn't get nearly enough sleep last night, but I was able to function a little more today than yesterday. I got ahold of my LTD carrier, and talked through the situation with the nurse. She's going to report to my case manager that my claim should be extended and then revisited around the end of January. But, she does't make the decision.

My migraines yesterday was bad... and, to top it off, I ran out of my abortive meds after my second dose. Didn't occur to me to this morning that I could've sent Jeremy to pick up the refill I had my doctor call in to the store for me (his work is giving them 2 weeks off... sure hope this isn't a sign of another job loss). I hate that my mind just stops working altogether like that.

On a more positive note, though. We'll be heading to Texas in the next couple of days, and then I'll be having my surgery on Wednesday. I can't believe it's almost Christmas!

Some Music to Soothe the Soul

Since I've been in a somewhat funky mood lately, I decided to let music soothe my soul a bit tonight. I came across some old favorites and a few new finds. I've posted 2 of the songs on my other blog:  Lead Me to the Cross by Hillsong and You Are Loved (Don't Give Up) by Josh Groban. Perhaps I'll post a few of the other songs in the days to come, but 3 is plenty for one day. I hope these songs bless each of you!

This Casting Crowns song is one of the old faves. It always calms my soul and reminds me how blessed I am to have such a loving Savior. Even the Lord of all the earth loves and cares for me. Thanks be to God!



Who Am I by Casting Crowns

Who am I, that the Lord of all the earth
Would care to know my name
Would care to feel my hurt?
Who am I, that the bright and morning star
Would choose to light the way
For my ever wondering heart?

Chorus I:
Not because of who I am
But because of what You've done
Not because of what I've done
But because of who You areChorus II:
I am a flower quickly fading
Here today and gone tomorrow
A wave tossed in the ocean
A vapor in the windStill You hear me when I'm calling
Lord You catch me when I'm fallingAnd You told me who I amI am Yours, I am Yours
Who am I, that the eyes that see our sin
Would look on me with love
And watch me rise again?
Who am I, that the voice that calmed the sea
Would call out through the rain
And calm the storm in me?

Chorus
Chorus II
(repeat)

Whom shall I fear?
Whom shall I fear?
'Cause I am Yours, I am Yours

Considering Medicare

Something made me break today. I received an information packet in the mail about Medicare benefits, since I'll have been receiving Social Security Disability for 2-years in April 2011. I received a form last week to fill out to get reduced premiums for Medicare (though we don't qualify), but it didn't hit me until today. In this packet, there was a Medicare Health Insurance Card with my name and everything on it. That's what hit me like a ton of bricks. I'm only 25 years old! The fact that I'm holding a Medicare card for myself is beyond surreal. I don't even know how to explain it... So, now I'm faced with all these decisions that have to be made now/soon regarding Medicare coverage.

My permanent neurostimulator implant surgery is a week from tomorrow, and I have no idea what life will look like once it's in and I really have a chance to heal from the surgery. I'm trying to balance hopeful and realistic...