Thursday, September 12, 2013

We are in new territory here - digging in and in this for the long haul. Yet praying and searching for ways to see even small improvements in Crystals abilities to be able to function - to be in less pain. 

  This is not what any of us would have foreseen or wanted for her life - and there are days she just doesn't see why God keeps her here if He is not going to answer her prayers for some relief. 

   Mom   " I just wish He would show off a little "  is one of the things she said to me this year - and that has stuck in my head. Will you pray with me that God shows off a little in Crystal's  life? That He honors the efforts of her to heal. 

   I am in Texas now - but never has she been closer to my heart. One of the things I am wrestling with this year is - how do I totally let go and enjoy my life - when every moment I am thinking of her and wondering what the next step is to help her move with life and heal. Maybe that is what my life is about right now - and its okay if that what it is - but I am ready to see God perform miracles and have her see some steady progress.

   I have had the privilege of meeting a new friend out here whom I love dearly. She too struggles with chronic pain and chronic illness.  I hear the pain in her heart too - though she tries to live as normally as she can - she feels that her whole life is about doctors appointments trying to get better. At times she is just so tired of the pain that she too does not understand why God just doesn't take her home. I am able to understand her pain because of Crystal.

  I am a bit selfish - I love my daughter with a love that is HUGE  and I love talking to her and love her being such a huge part of my life. I don't want her going ANYWHERE soon. But I SO want her to be able to really live hers. I KNOW that she would live it with passion and live it honoring God - she has SO much she wants to do and be.  I also love my new friend and don't want her going anywhere either.

Everyday is about wondering what our next treatment will be - when are we going to see results. Knowing there are no guarantees, but always believing that there is an answer. We have no assurance that she will recover 100%  but I have no room to doubt that she can improve 80 to 90% - and that would be wonderful for her. (She herself wonders if she is going to see ANY improvement)

  Then it is about wondering where the money is going to come from for treatment. God has provided so far thanks to you all. At times it is hard to start putting the need out there again and letting you know how much we need your financial help. But God created me with the ability to do that - I have  HUGE heart to love my daughter - I love people - and love to communicate with them. I am persistant and enthusiastic - and my families biggest cheerleader. 

   Normally I don't want people to be upset with me - but in this case I am willing to make an exception. I made a vow to my daughter a little over a year ago that i was going to fund raise for her until we found healing for her - if it meant I only had one friend left in life - and I mean that.

   So - here I am  - letting you know that this is the start of fundraising for Crystals medical costs again. She is pretty much at zero - and we have direction of where to go next.

   She will be starting here in Texas next month with an integrative physician out here who is very intelligent and knowledgeable, thinks outside that box, and most of all is willing to try things if they need to be tried. He is willing to take an overall look at all of the tests that Crystal has had tested and give us an overall picture of what she is dealing with and what he sees that could help her. He specialized in bioidentical hormones as well and can help us see if there are things she can improve on - as her hormonal system is a mess.  He is very familiar with lyme and other chronic illnesses and surrounds himself with experts in the things he is not as knowledgable with.   I trust him and like the way he thinks - and we feel that this is a good place to start.  I would also like him to do some testing on her neurotransmitters and see what is lacking there that could be affecting everything, as well as testing her detox abilities so we know what she can do to help her body get rid of everything it is dealing with.

  Then there is a clinic in New Jersey that deals with lyme disease and will go through many different avenues to help her body try to start healing.  Long term - she is on a waiting list to be treated by an integrated physician in PA that comes with high praise from other lymees, and who is up for challenges.   They have a one year waiting list, so  we have to start with these other options while we wait for her to get in there.  

  Our prayer would be - that once these places start treating her that we will see progress and not have to wait an year to see a lot of progress - but we are taking it a day at a time.

   Meanwhile her medical and travel costs are high. She will be travelling to Texas occasionally to see this doctor and will have medicine and costs with him.  Then in New Jersey when she starts with them we can expect the costs to increase   - we know what their visits are and that does not include all of their treatment options - but she needs to be able to pursue whatever it takes to get well.  

   I know that times are tight - but I am asking you to please consider giving to crystal so that she can move forward to these new treatment options - weather you can give a one time donation - or are willing to donate monthly.

  I also need your help.  I am only one person. One very determined person - but one person. I can use some great fundraising ideas, and I need you to help me get the word out to EVERYONE.  Crystal needs us!!

 I know that it helps to have a goal to shoot for - but as this is ongoing - and she is daily seeing different doctors - it is hard to say what we need to shoot for - but we were shooting for $20,000, and that is a good place to start - long term - she may need more and as time goes on - i will keep this before you and let you know how the need is coming along - and if that amount needs to be raised. 


GOOD NEWS!!! We now have the donate button up on the blog spot for ONLINE donations!!  This is all because of Crystal - though she feels like she has lost her cognitive abilities - she is still genius when it comes to website stuff. (But now it gives her a headache)     

  So PLEASE!!!!  Pass this on!!    Help people find Crystal's blogspot and get to know her!
                              And check out the new donate button!! :)

                                                Thank you all!!  

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