I love music. I'm not partial to one particular type or even one era. Oldies, country, punk, rock, reggae, instrumental, Christian. Whatever speaks to me. Over the last couple of months the song "Oceans" by Hillsong United has become my anthem or even my prayer. Things seem so confusing that the words of this song are the only thing that really make sense. "Spirit lead me where my trust is without boarders, let me walk upon the waters, where ever You would call me. Take me deeper than my feet could ever wander, and my faith would be made stronger in the presence of my Savior."
The last couple of years I have struggled to give up control of my circumstances and trust God. Although I have made progress I'm not there yet. I'm not sure I even know where there is but its apparent I have some miles left on this journey. I keep catching myself putting limitations on my trust in God. It's like "Lord I trust you to handle this BUT"...I'm going to do this other thing just in case, the timing of things isn't right, this other idea may be better. The excuse for not trusting is that I am exhausted. Frankly the thought of continuing on like this much longer is just overwhelming. Things are not hopeless just overwhelming.
Unfortunately things with my health have had little improvement since I began treatment in 2010. Some things have improved, others have left and come back, some have gotten worse and even some new symptoms have appeared. I do my best to keep quiet about how I feel on a daily basis because I know it doesn't do me any good to verbalize the negative. Plus if we are being honest, you frankly don't want to hear it. For many of you this may be a shock because what you hear about is the kids, softball, photography and occasional camping trip that make up a lot of my life. These things bring my family and I joy and are required to keep hope alive. They are required so my kids can go through their day to day life with some semblance of normalcy. As of right now I could not hold down a full time job of any sort. My brain function is too diminished to return to my career in the fire service in any capacity. My physical exhaustion limits a lot of my activity and I'm back to having to take a nap almost everyday. The days I push myself (Disneyland, shooting a couple of softball games, camping) I pay for dearly. That is a choice I make for the benefit of my family and actually for my sanity.
I am currently still at a loss over what to do next for my treatment. I believe my gut has been destroyed by all of the antibiotics I've taken these past few years, and for that I really need to try and give them a rest for now. My attempt at a big lifestyle change in January with the Daniel Plan was derailed but I am ready to give it another shot. I don't really have a choice. I'm doing as much natural stuff as possible and just trying to get the money together for the next step.
One of the hardest things to deal with has been the health of my children. We are in such an awkward position with trying to get them the help they need while trying to work with in the confines of our insurance. My 10 yr old continues to show some symptoms of Lyme and was recently referred to the cardiologist for an irregular heart beat and dizzy spells. The good news is she has a common sinus arrhythmia and the doctor does not feel we have anything to be concerned about. The bad news is, she still gets these dizzy spells for unknown reasons and the next step would be to see a neurologist. It scares me to think I will most likely be facing the same fight with doctors about my kids that I have faced for years myself. The last thing I want is to be accused of making things up about my kids. Finding the right doctor and being able to afford them is no easy task but my kids deserve to be well. Our younger daughter has been going through a lot the past year. We got a diagnosis of Sensory Processing Disorder about a year ago and have trying to get her some much needed help. After being told by one doctor that she needed occupational therapy, being referred to OT for an evaluation by our pediatrician, and having the head therapist agree that therapy was needed we were just informed OT was denied by our insurance because they don't believe it is medically necessary. In the meantime, my daughter has been having some episodes of nystagmus (eyes moving rapidly back and forth). This has led to a referral to the neuro-opthamologist for an evaluation. That appointment is scheduled for the end of this week. Although there may be no known cause for her nystagmus, she has not had this issue since birth. "Acquired" nystagmus seems to be most commonly caused by medication side effects, injury or disease. She is not on any medication and has had no injury we are aware of so that leaves diseases of the inner ear, a brain tumor or ms as potential causes. (Add a ruptured cyst and broken toe with our one dog the past two weeks and I am just drained.)
This is where I am left praying that I am able to have trust with out boarders, that I am led deeper than my feet could wander and that I can keep my eyes above the waves. This is not the life my dreams were made of as a little girl. But despite the struggles we have been blessed. Praying that we turn the corner sooner rather than later and reminding myself in the mean time that my track record for getting through bad days so far is 100%. I will try to give an update after my daughters appointment this week. Thanks for keeping up with our journey and letting my ramble.