Friday, February 20, 2015

Who is driving the infirmary bus?

This is my oldest daughter, Olivia, when she was 12.  She had just gotten her ears pierced in this picture for her birthday.  

Olivia has had health issues for what seems like her whole life.  But really aside from the fact that she was diagnosed with epilepsy at 4 years old, her chronic health issues seem to start in adolescence.  

She suffered from headaches and stomach issues pretty much off and on the whole time.  Even though she is smiling in these pictures, her life was consumed with not feeling well.  Throw a little teenage rebellion in there and those years were, well to say the least, difficult at best.

As her mom, I prayed desperately for wisdom and patience with her and for her.  

It was a time of surrendering control as a parent and mother to God because I really just had too.  What could I do?  Oh, don't get me wrong, I wasn't giving up or not doing my part.  I researched her ailments like crazy and revamped her diet to see if it would help, had her tested for allergies, took her to a chiropractor, and neurologist. But after I exhausted all I knew, I crumbled in a million pieces at the Lord's feet.  "Please show me Lord what to do next!"was what I prayed.  Most often God would grant me peace and patience to just be still and wait on Him.  Wait on Him to lead and me follow instead.

All of these people helped her in some way shape or form but no one seemed to be able to get to the root of her problems.  I learned more and more about health and lifestyle changes that helped prevent illness.  I studied alternative cures for colds, allergies, gut problems, and how chemicals can effect people through, cleaning agents, food additives and vaccines.

I feel like God has blessed us with a wealth of information through the web and so we rarely see general practitioners for colds or infections.  Using natural remedies we have cured our family of many issues that the normal person would deem a doctor visit necessary.

But Olivia's health issues seem to just evolve into more complex issues.  She would complain of feeling foggy brained or just plain ol' fatigued all the time. The chiropractor really helped her with her  daily headaches but she would still get headaches with fluorescent lighting in department stores or church.  She began wearing sunglasses inside places that had these lights to prevent a headache.  It actually worked even though she looked somewhat alarming with shades on inside! 

Her stomach still continued to give her problems and we discovered that gluten and dairy were not her only issues.  She is sensitive to all kind of pepper and chills, soy, all nuts, and beans if eaten too much can rip up her stomach.  She began having to evaluate every meal she ate.  Does this have gluten or maybe dairy in it?  Does it have any pepper in it?  Each year seemed to bring on new sensitivities and now she breaks out in hives when she eats certain fruits and can't breath when she eats corn.

I can't say I have always been so compassionate to her problems. I'd have to say that being in control and making things happen is my nature. I'm her mom and should look out for her as best I can, making sure she gets the kind of medical care necessary for her to live as normally as possible.  This is what I tell myself anyway and with that comes a sub-conscience stress.  If you live with the thoughts that you are the one who should be able to find her help so her problems can be fixed, you are just going to come up to a dead end because God has to be driving the infirmary bus. It is true that I'm her advocate and I will be forever.  But what if you don't know what else to do?  What if you have exhausted all options? What if you've tried your best only to be chasing a rabbit trail.  You turn to God is what you do.  That's what I do sometimes later that I'd like but eventually I get there.

 I'm ashamed to say, we've had many fights over her not feeling well.  Living with someone who feels bad more days than she doesn't wears me out.  I'm a "pick yourself up and move on" kind of person.  The phrase "buck up camper!" comes to mind often.  Olivia wears her emotions on her sleeve --kind of gal. You always know how she is feeling because her body language and facial expressions say it all.  She is my drama queen daughter.

So how do we get along?  Some days we just don't.  Some days I have to practice my compassionate mother role a little more than normal.  She is learning to persevere even when she feels like poop.  God is using it all.  I just wish we could learn these things another way.

Now Olivia is 19 and is having more problems than ever.  I guess you could say she has a movement disorder where she twitches or jerks the majority of the day. We've seen a neurologist and had an EEG where everything came back normal.  It was such a hard day because as we were going in to review her EEG results, she was counting on the doctor having a prescription for a medication that would make this all stop.  She is a certified EMT and wants to work.  She cannot even drive because it's not safe. Well, that day was hard because the neurologist did not offer us any hope.  He had no meds that would help her.

 I ask God why?  Some people would say that isn't respectful to ask him that question but I don't think He is offended.  I'm learning many things through all this so that's probably why.  I'm learning to long for heaven.  To hope in a perfect eternity not a perfect life here on earth.  This earth is cursed so there is sickness and disease.  Is Satan targeting my daughter?  Maybe, but God is allowing it.  We know that everything that God allows is for our good. It's for her refinement and mine is what I've been told.  It doesn't make it any easier to go through, though.  Sometimes what we know to be true doesn't match up with how we feel about it.

Recently Olivia has begun having seizures again.  She has been off meds for 7 years but now we hope for some to help her.  Her seizures are different than they used to be.  It's hard to believe that the neurologist found nothing in her brain that is amiss.  No reason at all for her to be having these symptoms.  He suggested we see a psychiatrist because he thinks it might all be stress related.  That's what doctors say when they don't know what else to say.  He told her to try and live as normal of a life as possible. How do you do that when your body is deteriorating little by little?

This experience with this neurologist has just added to the fact that I have no faith is conventional medicine.  Another dead end.  Another doctor who has no answers and doesn't bother looking at the rest of her body to see if something might be terribly wrong. That's the problem with specialists.  They only seem to have training in that specific area and nothing else.  Could she have an extreme vitamin deficiency that is effecting her brain activity.  They say B vitamins and the mineral magnesium are both vital to brain function.  But when I brought this up, he shook his head and told me there were no documented studies on this so it can't be.

We just finished sending Olivia to Colorado to see a doctor who is a trained M.D. but has invested his life into learning about functional medicine.  This term means that they believe the body all functions together.  That all your systems are related.  They believe in looking at all the bodily functions to see what is amiss and could be the cause of your symptoms.  So Olivia has been completing a series of tests along with lab work to see what they can find.  This doctor has called me twice in a week to discuss her case.  I was put on speaker phone for her 2 hour consult.  He discussed her issues with his colleagues this week and then called me to discuss a few things that they are suspicious of.  I am so thankful for doctors like this one!  I even have his e-mail and can ask questions or give him necessary information as I think of it.  This is the kind of care I'm looking for!

I'm also looking for a new neurologist since the Colorado doctor thinks we need a second opinion.  He believes there has to be a medication for what she is experiencing.  Neither one of us wants her on anti-seizure drugs but sometimes there is a place for it.  What has caused her to regress?  Something.  She hasn't just developed a "condition" where there is no cure.  How can you not have seizures for 7 years and then start having them out of the blue?  Our bodies are complex and that's why I'm so glad I've found a knowledgeable doctor who cares and will do the research it takes to try at least, to figure her out! We now have some hope.  It makes all the difference, really. 

Am I still trying to drive the infirmery bus?  Nope.  God is driving this one.  Dr. Mark actually asked me to pray for God to give him wisdom.  This makes me respect him all the more.  He is not promising me that he can cure Olivia.  He knows his place and that it is only the Lord who can give answers.  

Here is the website to the practice in Colorado in case you are at a dead end and have some seriously health issues. 


Kristin Lodi


Lauren Mulford said...

"We just finished sending Olivia to Colorado to see a doctor who is a trained M.D. but has invested his life into learning about functional medicine. This term means that they believe the body all functions together. That all your systems are related. They believe in looking at all the bodily functions to see what is amiss and could be the cause of your symptoms." -This is SO frustrating. I have been through so many doctors who all claim some ridiculous things. And then I eventually realized that doctors only know what they are told in school. They don't do their own research. They read publications - the same publications that are available to everyone else. It extremely frustrating that not all doctors realize that the body is connected. And just plain ridiculous. I hope you find a good second opinion.

S.T.S. said...

As a Mom of a chronically ill child myself... I feel your pain, and I also Encourage you to continue to pursue health for her. When I look back at Sweet Potato's journey, and the 11 different Doctors we have seen along the way I'm so grateful for the last one where we got a real honest Diagnoses. Specialists can be the biggest pills of all... in reality their world is so narrow they do not know a lot about general things but rather a huge amount of a very small part of how the human body works. Some times it takes a lot of energy to advocate for our child but in the end it is worth it. Hugs to you Kristen you are doing a great job as a mom.

Carolyn Schatte said...

I'm so glad you have some hope and encouragement, Kristen! It does make all the difference in the world! I pray Dr. Mark can find some answers for you all! May the Lord give him wisdom and direct his thoughts!