Friday, February 29, 2008

Diagnosis

The past month has been quite interesting… my life as I knew it is heading in a direction I never imagined it would.

I saw a rheumatologist one month ago today (on Jan 29th). After 17 months (August 06) of sometimes excruciating, but always constant, pain and various other health issues, I have been officially diagnosed with Fibromyalgia. After a lot of research, prayer, and some doctors, I had self-diagnosed it about 9 months or so ago, and it turned out to be exactly what the rheumatologist said too. We think it was most likely caused by a rear-ending car accident in December 2005, but there’s no way to really know for sure. Here is an overview of this disorder:
http://www.fmaware.org/site/PageServer?pagename=fibromyalgia_overview.

Regarding the accident: I was hit by a pickup truck who was hit by another pickup truck behind him. Unfortunately, at that time I was very naïve, we all thought the vehicles were fine and we were fine, so I just asked for names & phone numbers just in case. Tim found damage to my car later that I didn’t see at the time or I probably would have gotten the police involved but I was already late for an eye doctor appt. When I tried to call both guys, the one in the back had a disconnected phone number and an address that didn’t exist. I spoke with my insurance company and found out the guy in the middle cannot be held liable. Besides, there’s no way to really prove this is all a result of that. It’s a very finicky disorder that has an unknown cause… sometimes induced by trauma, but there’s really no way to tell. The only “official” diagnosis is a pressure point test to see if your muscles/joints are tender to the touch, and that you have 3 out of at least 10 of the other general symptoms. I had pain in almost every area of the 18 pressure points (toes, fingers, elbows, shoulders, hips, knees, neck, etc) and I’ve had that pain now for 17 months (you have to have it at least 3 months to be diagnosed).

My symptoms definitely wax and wane (or in my words… roller coaster). The pain is always there… sometimes in the background, sometimes in the forefront, sometimes so bad I can barely move but that is fairly rare for me. The fatigue is pretty constant unless I manage to get a really good night’s sleep without many disturbances, which is unusual. The other symptoms include tingling (it all started with tingling in my arm), numbness, sharp or burning sensations, acid reflux (initially this was so bad I had to cut all acidic products from my diet like orange juice, anything with tomatoes, etc, but it’s not quite that bad anymore), IBS (irritable bowel syndrome), migraine headaches, sensitivity to extreme temperature swings, face flushes easily, skin sensitivities, more allergy intolerances, spicy food intolerances (I went from just not liking it to being super sensitive to it), severe sinus pain, brain fog (also referred to as “fibro fog”), loss of coordination and balance, and so on. This isn’t a degenerative disorder and it’s not going to kill me or anything, but it’s really annoying and painful. My symptoms flare up with changes in weather, if I overdo it, if I’m sick, if I have a high stress or anxiety level, etc.

Despite the self-diagnosis months ago, it’s such a strangely different feeling to really hear it come out of a specialist’s mouth. Like “no way, this can’t possibly be happening to me…” even though it had already become a regular part of my life, but now it’s real. It’s overwhelmingly real. It was an immediate mixture of relief and feeling really overwhelmed with everything. This disorder puts all of the pressure on yourself… you have to go into it all with the right attitude, the desire to make some lifestyle adjustments, and you have to be proactive about getting your questions answered, finding the right specialists, etc. I have so much to do and change, it is utterly overwhelming. It’s so tough to face this reality.

I have to go back for one more blood test, and hopefully I can get that taken care of early next week. Once those results are in, the rheumatologist wants to see me again to discuss the ways to manage my fibro so it doesn’t manage me. Hopefully he can adjust my medication since the pain pill I’m on now doesn’t really make a dent. I really hope to talk to him about switching out my current non-working pain medication to one that will hopefully work much better (Lyrica, read more here: http://www.drugs.com/cdi/lyrica.html). It’s the first FDA approved drug to help treat fibro. I know someone else on it and it’s really working for her, so I’m praying for the same results.

I think I’ve been in denial for a long time. I even thought last year the pain might be related to my wisdom teeth coming in, so I immediately endured that surgery just to be sure! That only seemed to spur on the pain and I found myself on yet an additional medication. Before all of this I was on two medications. Now I am on five, a sixth that’s only taken as needed (maybe once or twice a year) and the rheumatologist gave me yet another prescription to add to that bunch (it’s basically a higher dose of Ibuprofen to help endure the pain). I’m still debating about whether or not to take it… it makes me a little nervous so it’s still sitting on the shelf. I’m really hoping that I can add Lyrica soon and then see some real differences.

Granted, medication is not always the best option, but for someone with this disorder it can often make a huge difference. There might be other ways to alleviate the pain without medication, but for just right now, that’s the best place to start for me (along with regular chiropractic care to also help fix my spine which is wayyyy off and basically curving the wrong direction at my neck—probably from severe whiplash). Anyway, after 17 months of this pain and agony, I need something to help right away, or I fear it might just drive me crazy! Hopefully I’ll be able to come back off the medications within at least a couple of years, but I have to find ways to work through this first.

Generally speaking this doesn’t interfere with my work life. I have had days that are worse than others, depending on how often I’m on my feet, moving, or lifting stuff. I take the elevator instead of the stairs now because it’s so painful to use the stairs, even though being more active can ultimately help with my pain… but in the meantime, I doubt my coworkers want to regularly hear my screams or groans as I go up the stairs. I’m caught in an unfortunately vicious circle—it’s really painful to exercise, but to feel better I need to exercise—ugh!! At least now I know I’m not hurting myself by exercising… I just have to push through the pain.

Yes, this did affect our plans for children and it’s part of why we’ve been holding off. I did confirm that this won’t affect my ability to have kids, but it may limit my ability to do certain things for them. Just holding a baby for 5 minutes is extremely painful despite all the joy that it brings. We are praying for God’s strength and guidance on this.

One of the hardest things about this is, being overweight, people look at me like I’m a lazy bum. Yes, I walk slow and always have (even in skinnier days), but now I walk even slower. Yes, I take the elevator for just one floor and yes, at one time that used to be because I was tired or just wanted to skip it. Now I’d love to be able to do those things without so much pain. And I’d love to end all of the judgmental looks that I get.

Needless to say, I am learning and growing a lot.

As for my diagnosis, yes I’m glad to have one. I’m very thankful to have a place to move forward from because I know not everyone has that. And yet, I struggle with it. I know God allowed this for a purpose, and I do want to make a difference, but I’m not sure how or where to start… so for now, this blog and sharing this story openly is where I start.

I don’t want this to change the way people treat me… that’s part of why it’s been difficult to share the news. I don’t want people to pity me or look down at me. I hope this helps spur on some conversations about pain disorders. I hope people aren’t afraid to ask me questions about it. I don’t have many answers, but I don’t mind sharing what I have learned from this experience thus far. But I do prefer not to get a lot of unsolicited advice at this time. There’s a lot that goes into this that I can’t explain fully here.

Please don’t hesitate to leave a comment here, email me, or talk to me about this. Also to my dear coworkers… I’m still trying to keep this somewhat quiet, so I prefer that you keep this to yourselves at this time. Thank you for your understanding in this.

Ultimately, in light of Christ, my suffering is nothing. In light of what so many others are going through… from those across the globe in the persecuted church to those who have battled cancer endlessly and painfully for years to those who have watched their children die and so on… I know I have it easier than them for whatever reason. That helps remind me to be more thankful and returns me to the word of God and the foot of the cross. I don’t know how people go through these things without knowing the Lord. I don’t know how people have made it through what they have, but I really admire those who have (like our friends whose 2 year old son was diagnosed with cancer last year—now he’s free of it, but we watched them learn and grow soooo much through that process and I don’t know how they did it). But I do know that we serve a great God and that he only gives us as much as we can handle. I pray that I have a strong enough faith to remember to lean on the Lord no matter what he gives me and that I won’t doubt him. That isn’t easy for me to do, but I’m trying.

If I can help anyone by sharing this story and leading them to Christ or glorifying God through this, then I know I have fulfilled God’s purpose for me. I know I was meant to go through this for a reason. I don’t pretend to fully understand or grasp this or anything else God has in store for me in the future, but I know I serve an amazing and holy God who wants nothing but the best for me.

Below are some lyrics from some songs that have really helped console me and remind me of the power of God’s love and goodness. I’d really like to share them with you.

How Great is Our God
By Chris Tomlin

The splendor of a King, clothed in majesty
Let all the earth rejoice
All the earth rejoice
He wraps himself in Light, and darkness tries to hide
And trembles at His voice
Trembles at His voice
How great is our God, sing with me
How great is our God, and all will see
How great, how great is our God
Age to age He stands
And time is in His hands
Beginning and the end
Beginning and the end
The Godhead Three in One
Father Spirit Son
The Lion and the Lamb
The Lion and the Lamb
How great is our God, sing with me
How great is our God, and all will see
How great, how great is our God
Name above all names
Worthy of all praise
My heart will sing
How great is our God
Name above all names
Worthy of all praise
My heart will sing
How great is our God
How great is our God, sing with me
How great is our God, and all will see
How great, how great is our God


All Because of Jesus
By Fee

Giver of every breath I breathe
Author of all eternity
Giver of every perfect thing
To You be the glory
Maker of Heaven and of Earth
No one can comprehend Your worth
King over all the universe
To You be the glory

And I am alive because I’m alive in You

And it’s all because of Jesus I’m alive
And it’s all because the blood of Jesus Christ
That covers me and raised this dead man’s life
It’s all because of Jesus I’m alive
I’m alive, I’m alive

Giver of every breath I breathe
Author of all eternity
Giver of every perfect thing
To You be the glory
Maker of Heaven and of Earth
No one can comprehend Your worth
King over all the universe
To You be the glory

And I am alive because I’m alive in You

And it’s all because of Jesus I’m alive
And it’s all because the blood of Jesus Christ
That covers me and raised this dead man’s life
It’s all because of Jesus

Every sunrise sings Your praise
The universe cries out Your praise
I’m singing freedom all my days
Now that I’m alive

And it’s all because of Jesus I’m alive
It’s all because the blood of Jesus Christ
That covers me and raised this dead man’s life
It’s all because of Jesus

And it’s all because of Jesus I’m alive
It’s all because the blood of Jesus Christ
That covers me and raised this dead man’s life
It’s all because of Jesus

It’s all because of Jesus I’m alive
It’s all because the blood of Jesus Christ
That covers me and raised this dead man’s life
It’s all because of Jesus
I’m alive (I’m alive)
I’m alive (because of Jesus)
I’m alive (I’m alive)
~~~

This song truly says it all for me. It is all because of Jesus that I’m alive. It’s all because of Jesus that I can make it through no matter what I face in this life. To God be the glory!

{Side note, updated 10/31/08: coworkers, this is no longer a secret, so don't worry about that.}



3 comments:

Bob S said...

Roe,

I'm very sorry to read all this news. Cinda and I will be praying for you that with medication and other treatment you'll be able to manage this condition well.

Love,
Bob

Julie V. said...

Roe,

Thanks so much for sharing your heart. I'll be praying for you. I can't even imagine what it is like to go through life with constant pain (I couldn't even stand to be down with the a stomach/intestinal flu for less than 24 hours last week).

I pray the Lord continues to wrap you in his arms of love and strength. May He encourage you each step of the way and remind you that He will never leave you or forsake you.

Love,

Julie

Anonymous said...

Wow Rochelle...what you are going through is so much to handle. Luckily I was able to have surgery to correct my condition. Unfortunately it sounds like you will be on medicine all the time..that sucks I know. I pray that you get better and the medicine you are given helps.

Love ya,

Melissa Knotts