Friday, October 21, 2011

My Story... Hope, Faith, Changes & a Little of Your Help Needed!

   Hi everyone! As many of you know, my hunny, Jeff, is very sick. That is actually why I went from years of working at a bank to becoming a "homemaker" to help him. I have always been such a private person, so I have never elaborated into any details around his illness. But this is a blog, and what is blogging all about, but to talk about your life as you wish, right? 
   I have "known of" Jeff most of my life, but Jeff & I really met while I was working at a local bank. In the small town I live in, everybody knows everybody (and knows everybody's business). He owned the local auto body shop and the bank I worked at was just a block away. He was (is) easily the most charming and best looking man in town. We actually had "Jeff F. day" at the bank (the days we knew he would be in). The utility offices, cable office, etc actually had the same "day". He could, and still can, make even the little old ladies weak in the knees. He still calls and any female over the age of 50 "girl" to make them feel young. I always had this feeling about him, that we would be together one day, years before we were. Jeff was divorced with children (which usually would have been something I wouldn't go for at that point in my life) , but when you know, you know, right? 
   Well, several years ago, we started seeing each other. Jeff was in perfect physical condition, but was becoming sick. His legs were becoming weaker and weaker. He went to many doctors, all who said something different. The most awful office visit was the doctor who told him he was 75% sure he had ALS (Lou Gehrig's Disease) and only had 3-5 years to live (this was in 2005). Devastating was not the word for it. For a couple of years, this is what he believed was wrong with him. He even took his savings and we went to Mexico for him to receive a stem cell procedure. The thing about his disease, was that it was nothing like ALS. There were just TOO many differences in the progression and symptoms. I am such a researcher, so I began looking into it, going through old medical records, etc. I discovered a doctors visit in 2001 when Jeff had a rash from a tick bite. He used to be really into turkey and deer hunting and could recall pulling many ticks off of him over the years. It hit me right away. I began researching Lyme Disease and got him an appointment to get tested. After 3 years of being misdiagnosed and probably 8 years of being sick, we discovered that Jeff had Lyme disease and this, along with all of it's co-infections, were causing his sickness. This was a miracle in itself! We had no idea that the battle was just beginning. 
   
  Lyme disease is a VERY complicated disease. It is known for mimicking many diseases and so many people who have it have no idea. It can be carried for years and then surface itself when a carrier goes stress. Jeff went through a bad divorce and then lost his mother (eg.. stress). This awful disease has  many co-infections and it is very difficult to find a Lyme-literate doctor. For now, I will not go into the long journey it has been to find a good doctor. Last year, he saw amazing results with antibiotic and holistic treatment. Then came a major setback and it is almost like we are starting all over with his treatment. The co-infections are on a cycle and reproduce monthly, so without treatment, the disease only gets worse. It has taken life as he knew it away from him. He can not walk (and hasn't been able to for a few years) and on some days can barely move his arms of legs either one. Like I said, last time he was on treatment, the results were amazing. He was able to stand again and got most of the mobility back in his arms in just a short period of time! We are praying for those same miracles once again. This is such a dangerous disease, especially at this point, and the medicine makes him very sick. 

  Yesterday, we had to travel out-of-state to a doctor. Hopefully by next week, J will be back on his treatment completely. This is where I need your help. This doctor has put him on a very strict diet and a very specific medicine and vitamin regimen. 


This new diet is as follows: 


NO grains of any kind (wheat, barley, oats, rye, rice, all sprouted grains, not even gluten-free flour)
NO Fructose/high fructose corn syrup
NO dairy


EAT:
30-80% Veggies
10-30% Fruits
10-30% Nuts (the main problem with nut flours is that Jeff's son Trevor is highly allergic to any nuts, so we have to be very careful with having it around)
10-30% Meats


   There are many Gluten-free foods I have found that can be eaten, but many of these foods/recipes contain HFCS, dairy, are processed, or require the Gluten-free flour which isn't an option. 
  
 I also just discovered the Paleo diet. This is the closest I have been able to find to the new eating plan. The Paleo just contains more meat than the above diet.  I have to figure out an entirely new way of cooking and in this little town, it isn't easy to find the organic foods that are needed. I also have to figure out how to keep Jeff from losing any weight on this diet. If you have any resources that may be helpful, I would really appreciate it. This has gotten to the point now of being a life/death situation, so we need all the help we can get. 
  
  Thank you all SO much for letting me open up to you. It really isn't easy for me at all, but this is a start. I am thinking about starting another blog just for talking about all of this,(because I really don't wanna bring you all down with my downer stories) even if I make it private. I hope you all are having a wonderful Friday!!! I haven't forgotten about the 500 follower giveaways I promised you guys! I have a few lined up, it has just been so hectic and I haven't gotten them posted. I also want to mention that this past week, HiH reached 200,000 page views! I think that is pretty fabulous for less than 11 months! Thanks y'all! Well, I will see you in the morning for the Weekend Soiree and Blog Hop! Can't wait to see what you guys have been working on!

23 comments:

  1. i was actually thinking about you this morning, as i was praying for another blogger with health issues, and i was wondering what your fella's health problems were. i will say a prayer for you guys. something to look into... have you heard of isagenix??? i have been using it for my diabetes and it helps with A LOT of other problems. it's 100% organic and has great nutrients to help with immune system, etc. you might check it out and i can get you intouch with someone if you are interested!!!

    my hubby's dad got diagnosed with brain cancer and was given a few years at the MOST... he lived almost 20 years due to the grace of the Lord. I will pray for y'all!

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  2. you could check out the Hallelujah Diet

    it is mostly raw and entirely vegan
    which it sounds like
    you're going to have to do

    i don't have a website for it
    but i'm sure you'll find it
    if you google the name

    best wishes to you and jeff
    as you try to manage this illness

    alison

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  3. Oh poppit, what a terrible time this is for you both, really hope this next round of treatment works just as well as last time.

    Earlier tonight I found this blog http://www.multiplydelicious.com and saw Paleo mentioned in most of the recipes, and they look so good, hope you can find something useful, perhaps the blog owner might be able to offer some advice as to sourcing the ingredients. Hope this helps, send best wishes for you and Jeff

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  4. Praying for you guys, hope this treatment goes well. Thanks for sharing your story. Please let me know if you ever need anything.

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  5. I'm sorry, I have no idea what to suggest as far as diet... I did read a blog post somewhere about a girl that eats gluten free and her hubs cannot have anything dairy... She shared a few recipes that she'd come up with. Maybe you can create something too! You are a beautiful caring lady! Sending happy thoughts and prayers your way!

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  6. I say bring on the "downer" stories. That's what friendship is all about, the highs AND the lows. You never know how your story will relate to someone else's struggles and you can bring them comfort. I'm so thrilled that despite the heartache you and Jeff have been through with the disease, that he has such a brilliant woman by his side researching and willing to be present. What a wonderful example you are setting. I will continue to keep you all in my thoughts and prayers. I have not heard about the diet you mentioned, but there is a lady in my bible study who has a very ill husband (different disease) and they have switched over to The Makers Diet and it has really helped him to stabilize. Hope this helps!

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  7. You are strong woman, and what a lucky lucky man to have such a woman with such love in her heart to work so hard to help him. THESE are the true love stories. I hope and pray that things work out and you find some sort of food plan that will help.
    Karin
    www.artisbeauty.net

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  8. Crystal, I am so honored that you, and Jeff through you, are willing to share your journey thus far with us. Thank you for trusting your story and your heart with us. You are both being held close in thought and prayer continuously!!! Love Laurie from Scene of Sublime Blog

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  9. I will be praying for you and Jeff. You are a strong woman and a wonderful wife and person to stand by him through all of this. I do hope he gets better and can live a happier, healthier life.
    Here is another thought, have you considered essential oils? They are all natural 100% pure and there are several different essential oils that can assist with pain management, etc.
    If you interested visit this website: www.mydoterra.com/amandawebb
    There are dietary products as well, also all natural.
    The best of luck to you and your family!

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  10. Praying for you and Jeff. Wish I had a suggestion on the diet.

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  11. Best wishes. I have nothing to offer on the diet but I will include you both in my prayers!

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  12. Crystal, I wish I could be of some help. I know exactly what you mean when you need help but feel bad about posting "downers" on your blog...but you know it IS ok to do that when you need to. It all sounds so complicated and scary... a friend of mine was gluten intolerant and I remember how difficult it was for her to find stuff and she didn't have all the extra complications! All I can do is wish you both well and ask that the Angels send you healing and strength.

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  13. Thank you for sharing this with us. My son and husband have just been diagnosed with Celiac (Gluten-Intolerance). As I reinvent our kitchen I will keep an eye out for yummy meals that fit your diet. Thanks again! :)
    -Jen

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  14. Crystal, I have asked all my friends on facebook to inbox me with any info/websites that they may know of for Lymes and the Paleo Diet. Not sure if it will throw up anything you haven't already found but felt it was worth a try.

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  15. I have been following a blogger with so much information. here is her link:
    http://realfoodforager.com/
    She cooks with coconut flour and has a resource page with all the places to order different things...such as this. I have heard almond flour is great too but with the nut allergy, it sure makes things tricky. My daughter is a Celiac but she can eat anything without gluten....and it is hard enough. I will pray for you and your family.

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  16. You and Jeff are in my prayers. Sorry I don't have any good food advice to offer - I have heard good things about the paleo diet though. I hope he gets better. I understand how hard it is to reveal personal things on your blog - but hopefully it'll open up the opportunity for someone to give good information!

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  17. I'm sorry you and Jeff have been having such a tough time. Hope things will soon improve. Here is a list of sites with gluten free recipes that I've come across:

    http://www.celiac.com/

    http://glutenfreemommy.com/recipes/

    http://glutenfreegirl.com/recipes/

    http://www.delightfulcountrycookin.com/search/label/gluten%20free

    http://www.hillbillyhousewife.com/category/articles/glutenfreeliving

    http://heavenlyhomemakers.com/recipes-2/gluten-free

    http://simplysugarandglutenfree.com/

    http://www.tacanow.org/family-resources/gfcfsf-ingredients-and-substitutions/#anchor-oils

    http://nurturedfamilylife.blogspot.com/p/gluten-free-recipes.html

    http://simpleliving-sherrie.blogspot.com/search/label/Gluten%2FDairy%20Free%20Recipe

    http://www.colourfulpalate.com/2011/09/05/favourite-gluten-free-bread/

    Noreen
    www.craftlinky.com

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  18. I had no idea that Lyme disease was this serious! I am so sorry. As far as food, my son is allergic to dairy and nuts. All the recipes on my blog are milk and nut free , or are easily adapted that way. We do eat grains and I have never monitored HFCS. I know that I have a potato salad and a pork kabob recipe that should work. It is hard not to loose weight without dairy. It has so much fat. If he can eat nut butters, that might be better to have around his son since it stays in place. I will keep you guys in my prayers. Please let me know if there is something you want to make without milk. I have gotten pretty good at working around that.

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  19. I know it is hard to ask for help but we in blog land want to help! Please email me at hollyannphoto@gmail.com. I have some information I'd love to share with you.

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  20. Crystal,

    I have just become one of your new followers.

    I just wanted to add a little more and say that I can understand in way what you are going through. I know that it is different for everyone, but my story is similar.

    My husband became very sick about 2 years ago. Long story short, we spent over a year testing for every possible disease. Even the two you mentioned.
    Finally we had our house inspected and it turned out that we were having Carbon monoxide poisoning.
    He had a predisposition for it, so he got the brunt of it. The rest of us recovered quickly.
    He is now disabled, has a pacemaker, and is on and off oxygen. I do not homeschool any more, so I can spend more time with him, help him get places, etc....

    So all that to say, I will be praying for you. I am so glad that you know Christ as your Savior, because He alone can bring joy and hope during very trying times.

    Melissa
    http://redflycreations.blogspot.com

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  21. My girlfriend's husband suffered from Lyme's Disease and he used the Paleo Diet. It is not as severe as your husband's, but he did notice a remarkable improvement.
    My prayers are with you Chrystal and I know that it's hard to share a personal part of us on our blog, but I believe it's a safe place and I also believe that you will find nothing but support and lots of love that comes your way!
    Keep us posted.
    xo

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  22. I don't have any advice to lend on the diet front but I can and will pray for you and your husband! I am still struggling with how much I want to share on my blog so thank you for opening up to all of us! I hope and pray you find the help and resources you need!

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  23. You probably have all the resources you need ~ and I personally don't know how to cook gluten free ~ i have friends that do and it's a big learning curve ~ i know you can do it (truly it'd benefit all of us to some degree) ~ this blog maybe will help you!?!? http://www.bestofthislife.com/p/recipe-index.html ~ cute blog with gluten free recipes page ~ you'll be in my prayers Crystal!!!

    Tight Hugs,
    Aimee @ ItsOverflowing.com

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I love reading each and every one of your comments! It really does make my day!