Wednesday, January 23, 2013

Heaviness and Light

We've just come out of such a wonderful week with my parents visiting from Washington and I don't think I can adequately describe just how much fun we had. My parents sure know how to relax as well as have fun! Casey loved having their attention and he suckered them into reading about a billion books. We absolutely love that our boy is a book fanatic! He's learning new things by the day and continues to amaze us and bring us joy.

While my parents were here, we recieved the sad news that Grandpa Dupar had passed away (Aaron's mom's dad.) We knew his health had been declining over the past few months, but the timing and news of his death still came as a bit of a surprise. It was nice to have my parents here to bring comfort. It's in those moments that you're never prepared for the emotions and it's one of the toughest times to live far away from family.

Grandpa Dupar was an amazing funny and gentle man. He could tell so many stories and keep us all laughing. Christmas 2011 was was a time we'll never forget. All of us were together! All of Aaron's family and even my family flew down to Palm Desert, California for a sunny Christmas. Casey was only 6 months old and looking back, that time together will bless our lives forever.

Grandpa's memorial/celebration of life will be in early March. While we want to be there, the timing is a challenge for us. So we will be there in spirit.

Casey and I will actually be flying out to Seattle in mid-February for two weeks. We will use this time to connect with family. And after much consideration, prayer and thought, I will also be seeing a specialist in Seattle regarding my unexplained symptoms. I'm not sure how many of you read my last post (and/or the comments) but a dear friend of mine from Virginia had suggested possible Lyme Disease. It struck me as interesting because that was the first thing my ND here on the island had brought up back in September. Obviously having grown up in Washington, I have heard of Lyme Disease but I didn't know much about it. So back in September, I was given the CDC approved antibody test which came back negative. I guess I just blew it off as another thing to check off the list. But then both my ND and MD here started to explain to me that the test is inaccurate 60-70% of the time for something called Chronic Lyme Disease (advanced stages.) After revisiting the possibility, I have been advised to seek a thorough examination by a Lyme literate MD in Seattle (there are no LLMD's on the islands). I'm taking a series of very specific tests but will also be evaluated clinically to determine what is going on. All of that to say, I have clearly been chasing down a lot of rabbit holes so I have no idea what will come of this, but there is no doubt that my symptoms are almost creepily (if that's a word!) similar to Chronic Lyme Disease. There are a lot of misunderstandings about this disease which makes the diagnosis all the more frustrating and difficult, but there's no doubt that it exists and that it is thought to affect thousands - if not millions - of people around the world and many of whom are misdiagnosed with things like Chronic Fatigue Syndrome and Fibromayalgia. I'm grateful and confident that either way, I believe this extremely competent specialist will be able to help me determine what it is I've ben suffering from. I can never lose hope.

If anyone is interested in reading about Lyme Disease and other ticke borne diseases, you can visit this link for very useful information:

As I said, this could prove to be just yet another thing I check off the list, but it's important to either diagnose it or rule it out. So i'm going with my gut (the Holy Spirit) and am going down this path. Yes, i'm nervous. Yes, I have many questions. Daily I remind myself that God knows every single detail about me (and all of us! Whether we like it or not.) EVERY LITTLE THING. While that means He knows every good or nasty thought we have, it's also comforting to know that God knows what is ailing me and I believe He's guiding each step i'm taking. With the support of my loving family, this is happening.

To my praying friends, would you please join us and lift up this process? We are giving it over to God. We are tired of searching, wondering, confusion, helplessness and more. I say "we" because chronic illness affects everyone closely connected to the person suffering. But in truth, I can proclaim God's faithfulness through it all. I have been stretched, am being transformed and in my heart, i'm better because of it. Even in the heaviness of life...the loss of a loved one, the pain of illness....there is still joy, hope and light.

I will not be sharing about this process publically via facebook and will only be sharing these personal details here. But outside of seeing the specialist and spending precious time with family, I certainly would love to catch up with friends.

Thursday, January 3, 2013

The "chronic" challenge.

I'm taking a big, deep breath here because i'm about to write some very personal things. For those who suffer from unexplained illness, there are many challenges and frustrations that come with it. I could list all of them here, but that list would be long so I won't! I'm just going to high-light one of those (in my opinion) significant challenges that I believe impacts everyone with a chronic illness, and also their families.

False hope.

I have seen many doctors. I have also seen and/or spoken with/read about many alternative doctors. I do believe in natural medicine. I also believe there is a time and place for more "modern" medicine. Somtimes I find that I fit into one category...and then the other. Other times, I'm not sure which one and I simply throw my hands in the air. I have tried anti-anxiety medication, prescription medication and many supplements.

When I was recently diagnosed with a systemic bacterial infection, I chose to take a heavy prescription dose. I knew I had disappointed my natural doctor, but it was a choice. And I made it. I made it along with my physician. I trust both, but I still had to make a decision. Certainly I hoped this would be the "cure" for my long 2 years of suffering. It may still be. But it hasn't happened yet - I can tell you that for sure. I have my good days and then I have my bad days. And the bad days hurt and scare. They also exhaust me and my loving husband. I broke down in front of my MD yesterday. She is the most compassionate doctor I have ever known. I am so thankful for her. I'm afraid some doctors forget that their patients are humans with pain and illness and families to love. A little compassion goes a long way. I told my doctor that my biggest fear is my son growing up and only knowing his mom as "not well." Just stating that or even thinking that sends me into near panic.

When a person can't get a diagnosis, it's nearly impossible to utilize a proper treatment.

I am finding relief from my food allergies (dairy and gluten.) I am also doing as well as can be expected on my supplements, but I am not cured by any means. This may be a long process of healing which could be 2 more months, 2 more years or the rest of my life. THE UNKNOWN. I don't know. The positive aspect of chronic illness is also the negative. How strange, right? The positive is that just looking at me, you wouldn't know i'm not well. You wouldn't know that i'm fatigued (not tired...different thing), my neck aches, my head aches, my breathing is labored and stressed, my balance is off, my heart palpitates up to 20 times a day (sometimes painful and always irritating - especially when it wakes me up from sleep.) I can hide it really well when I need/want to. But it's also negative because it would be easy to say, "You're not sick! You look great!" Looks are so deceiving. This is when those of us with chronic illness potentially fall into the "nutcase" category.

Just to clear the air, so far I have been "diagnosed" with these things: hormone imbalance, anxiety, food allergies, malabsorption of nutrients, systemic candidiasis (treated via prescripton), arthritis in my cervical spine (how the heck did that happen?!) i.e. chronic pain, and now (the most recent possibility) CFS: Chronic Fatigue Syndrome. It basically encompasses all the things listed before it. CFS is diagnosed via process of elimination of other things that can cause the same symptoms. But i'm stubborn so I haven't resolved to accept that diagnosis yet. Maybe if it's brought up enough times, I will. But not yet. Let's face it. I'm in denial about anything that isn't curable. Make sense? And I'm in denial about anything that would potentially cause me to have to take long-term prescription medicine (not saying that CFS requires that). I just can't do it! If I were to diagnose myself with something (ha!) I would probably diagnose myself with google-overload syndrome. That's right! I loathe Google. Every time I have a possible diagnosis presented to me, I research...and research...and research some more. Exhausting! I need to stop, my friends. I need to stop! Pray for me.

Can you see the pain of false hope in all of this?

And can I just add, I NEVER ever...ever...EVER thought I would end up with a chronic illness. I hate even typing that. I never really knew it existed until I look back on the last two years. I guess I've lived in denial most of my life thinking that when people are sick, they go to the doctor, have some tests done, find out what's wrong and take medicine. Reality check, Jenny! And I know that's probably easy to say....the "I never thought this could happen to me" phrase. But it's true. Never. Never thought. I mean, friends, I was running a half marathon at 5 weeks pregnant. I was energetic. I was fit. I was running the race! But thank you Jesus. I'm still here. I still have my life - my wonderful husband, the most beautiful baby boy who makes me cry with joy just looking at him, true/life-long friend. I love my life - still. I LOVE MY LIFE. And I give thanks.

Our pastor preached on giving thanks in all circumstances. You know that verse..."Give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1 Thessalonians 5:18. That verse always bothered me. Can I admit that? For my entire life, I thought that meant that we were to give thank in all circumstances - even the awful, painful and bad ones - because those awful, painful and bad circumstances are God's will?? I have totally read that wrong. It means it is God's will for us to give thanks in all circumstances, just as Jesus did. That is God's will. Not the experiences, the giving thanks part.

Here is my hope in all of this: I hope that I will become even more thankful and compassionate with each passing day. And I hope that I will truly live "giving thanks in all things."

I want to ask you to pray for me. Pray that I am healed, because I believe I can be. But if I can even ask for a more simple prayer, please pray that I could sing again. It's almost a thing of my past. That's really weird to me. That would be a good baby step in the right direction, or maybe a giant leap! Also pray for my family. I love them more than words can say and I just want to pray for Casey's innocence and Aaron's desires in life.