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.


Darren and Caitlin said...

Oh Jenny! I love you! And I'm praying for you...

Anne LoGrasso said...

I am praying for you! I hesitate to even suggest it since I'm sure it's crossed your mind, but we went to you-know-where and back with my brother and his unexplained illness for about 5 years and it turned out to be Lyme disease (one tick can infect with up to 5 different types in a bite so the symptoms can be all over the map). Anyway, we saw a movie called "under my skin" and it was helpful. There's more to the story but he is essentially better now and thankfully no longer has the "unknown". Love you and praying for you

Anne LoGrasso said...

Ps I've started reading Jesus Today (a follow up to the devotional Jesus Calling) and it is very hopeful... She actually wrote it while struggling with an undiagnosed/ chronically misdiagnosed illness (oddly turned out to be Lyme as well). Anyway, it is the most helpful book I've read yet outside of the Bible right now and worth the cost:)

Kelli said...

I cannot pretend to know how you feel or what you go through. I think that may be the hardest thing for others -- the same unknown that you speak of. It is hard for people to sympathize with something they cannot see or feel themselves. And I think that is the part that may be "our" challenge. I think you are exactly right. A lot of physicians may forget that their patients are real people with families and dreams. Some of them just are doing their job. Hopefully this doctor you have now can continue to be different for you. You always hear that you have to be in charge of your own medical care though and that you know your own body. I just wish there was an easy way for you to find an answer and a solution.

I think of you often. I love reading about how you are doing. I am glad that you are sharing this. Maybe it will help relieve some of the never know. But I sure hope so! I'll keep you in my thoughts. xoxo