WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Friday, June 7, 2013

Cannot Fall for the Snake Oil from Traditional Medicine or Alternative

Where previously our efforts to move forward with Abby felt like digging a hole through a Mountain with a teaspoon, now I feel we have hit a split in the road.

After a terrific visit with the family Dr. I am still left with the constant question- Primary or Secondary? I "know" it is secondary, and I have finally admitted to myself I won't rest till I find the Primary. It haunts every moment of my days and nights. It is bordering on obsessive. I want to make sure when we hit the medical road again I don't make the same mistakes again. That I pick the right Drs for Abby and honestly, the ones who will not immediately hate me for questioning EVERYTHING. I feel like I am preparing to walk into a battle, but not able to see my own failings well enough to make a great battle plan.

In many ways traditional medicine has failed Abby. It is possible she was blown off for years because I refuse to be dramatic,or maybe because she is tough. Maybe that form of medicine has failed because I have ALWAYs parented my children in a gentle way(I have no problem being the black sheep if it makes healthier happier children). When Abby had that tired body and face then no school, no social events, no dragging Abby around..Or maybe traditional medicine failed Abby because in my opinion, all Drs. should be much smarter then us and know everything! Of course that is so not fair of me to expect they know everything, but many could have done more. I grew up in a family with weird symptoms that held a few people in my family hostage but many of the odd symptoms we all learned to compensate for, so when the drs. repeatedly blew Abby off, we sucked it up and did the best we could. I have gotten over my anger and disappointment,though I admit I still have a smoldering anger that is hard to hide. I have learned to hold it in check. The general belief that modern medicine can fix everything and Drs. all know more then their patients-has been proven false too many times for me not to be upset at some level. I am upset with myself for falling for the stereo type and I am mad at them for not trying harder to be as big and smart as we need them to be.

Alternative medicine is hands down a kinder form of science. In many ways they see every issue as a whole body issue and many find it very important to find out all of the issues..Most understand that if a patient is spending the money to come see them, odds are they do not feel well and odds are they have found no answers through traditional Medicine. They believe nutrition is key. Of course they use lots of folk remedies that I actually already believe,and I appreciate that they have studied how each body system impacts the next, that you MUST find the primary, and not simply drug and cover the symptoms.. Unfortunately there are as many bad alternative Drs as there are traditional medicine Drs. The only thing that matters to some is lining their pocket.

I get it, we all need to make a living.. but you know what I am talking about.

Frankly a lot of patients who end up turning to Alternative Medicine are the many many patients who are sick and no Dr. is willing or able to help. The good alternative medicine Drs. understand often they are the last resort. Honestly, I talk to families daily who have found far more success with alternative medicine, but I am scared. In today's culture we are taught to trust the Traditional Drs and to distrust the Alternative Drs. I already don't trust Traditional Medicine, is it even possible for me to trust a different type of Dr.?

I am suspicious of ALL new Drs. 18 years of less then adequate medicine has made that a new part of my personality. Do I continue down just one path, or the other, or is it going to work if I blend both?

My biggest fear is that I am too anxious at this point to take the next step,to find a new team that knows how to help folks like us. We have turned our home upside down, I have learned to make everything(from bread to our own sausage,to coconut cheese!) and I do make everything down to her pit stick- I can keep reading,we have seen traditional Med Drs from the west coast to the east coast and many in between, but I really need a leader, I am not qualified to push for the next steps in her journey, but after 18 years I have learned that despite my lack of qualifications, I may be the only one who has the time and passion to take the job.

We are suspicious and vulnerable right now- not a great spot !

Yesterday, Abby's family Dr. was exactly what he needed to be. We asked for his leadership(of course within our rule book! LOL) and he did it! He is one of the few that has taken a deep breath and decided that though we are a red hot mess, and he cannot help the way he normally would(prescriptions)he can help us, and he does. He listens! He doesn't minimize. He tries so very hard to understand that we aren't dealing with a garden variety issue, that we as her parents know more about Abby, and he has to trust and double check our findings at the same time. Certainly no easy role to play in a patients life, I find it incredibly remarkable.

The journey isn't over. It is time to get moving again.. "find the primary, find the primary..."

I need to know. I need to know how to fight this, to keep control. I need to know what parts of this illness I cannot fix. I need to know how to help Abby understand what to expect from her funky body.

I won't however, put her through months of weekly appts again, or biopsies that stole so much precious energy again.. She cannot afford to drag her too tired and sensitive body to one appointment then to the next appt- each appointment steals from her precious stash. A wasted appointment sucks a little bit of life from her, I won't let that happen again.

If I want a different outcome this time, I MUST make different choices. The question is; what do I need to change to get a different, and more informative and helpful outcome?

I am still hopeful. I still believe we will figure out how to give Abby a more normal life. I know we have made the right choices since she has been far more stable since we opted for the long road by digging that road through the mountain with a teaspoon to help her. We made a great choice to quit blindly following the pack for the sake of not feeling alone.

But, it is time to either pull out that teaspoon and start digging at the mountain again, or time to think out of the box and create a new solutions.. I need to think, not react or a combination of both. I need to trust, but not blindly follow. I need to "see" Abby and know when to push and when to not worry, I need to be strong.

Thinking one hand can hold the teaspoon and keep digging, while the other hand scrolls articles on the computer.

We are doing a bone density test, just to make sure that what is occurring to her teeth isn't occurring in her bones. We are taking a closer look at her shrinking feet(down 2+ sizes despite stable weight- weird huh?) we are doing a "full" nutritional panel.. We can do this again, and we can and will do it better this time.


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