An Uphill Climb

Well, I know I said I would make a post after my appointment on Thursday, but I have a lot on my mind and thought it would be therapeutic to write it out. Well, hopefully it will be! I apologize ahead of time to my readers as my therapeutic measures might be boring or depressing, but hey...this journey is not always filled with smiles and successes; however, Jesus is with us at every turn, twist and bump and for that I am FOREVER grateful.

After my appointment, we were kind of on cloud 9.  My new doctor is amazing and for the first time we have some real hope that wellness might not just be an 8 letter unattainable word in our English dictionary. :)  We don't know specifics of what, when, where and how in regards to my treatment plan (hopefully, we will get those Thursday), but we do know that this will be a monstrous mountain to climb that will take every spec of energy, financial resources and faith to get to the top. 

We have started our journey on the mountain and are about 1 meter up (not much progress, but when you look at in inches, it seems a lot better (Ha!)), which is what brings us to the title of my post.  At our appointment, the doctor wanted me to get on a 4 day rotation diet.  I only have about 10 to 12 foods, but we have known this is an important step to move towards for awhile.  We have just ignored it because we knew it would be very difficult.  Well, after talking to my new doctor, we knew it was time to start.  So, yesterday (Saturday), we sat down and wrote out my tentative food schedule.  This may seem simple and easy to others, but when we have the doctor's instructions, my short list of foods and also my dreaded low blood sugar issues, it is REALLY difficult.

My doctor wanted me to only choose 3 foods per day and eat them as much as I wanted during the hours I was awake.  Well, I tried that and my body failed me.  First, eating a food more than once in a period of 4 hours just doesn't work.  I had allergic reactions to what I was trying to eat the second go around.  It seems like my body either wants me to gap 12 hours (that is what I have found that works pretty well) or doesn't want me to eat it all.  So, what I ended up trying was to only eat 3 times during the day so I wouldn't repeat any foods.  Well, that was unsuccessful too.  When you can only eat one food (ie. broccoli or just frozen blueberries), it doesn't matter how much you eat in one sitting, your blood sugar is going to drop in about an hour.  No fun and very unpleasant!!! 

Thankfully, I have a couple of dear friends, who have successfully made it onto a rotation diet with a limited selection and they were able to give me some guidance.  We are going to change things up a bit as I am learning that one type of rotation diet doesn't always work for every person.  Hmmm....sound familiar???!!!  Just like one type of Lyme Disease treatment doesn't work for every patient.  So, with the help of others, we are going to start over today and try something new. 

One of my friends said with her experience, the body will not react to a food you eat twice as long as you eat it within a two hour window.  So, if you eat it multiple times in two hours, it will help you keep your blood sugar level longer, intake more food and allow you to not "technically" be eating a food more than twice a day.  Apparently, for most, the body doesn't recognize it as a repetitive food attempt if it's within that window.  Also, by doing that, there is about only a one or two hour gap between meals which will help the low blood sugar issues.  You get this small gap by eating 4 meals a day instead of 3.  Now, we do realize that this will cause us to only be on a 3 day rotation diet, but you gotta do what ya gotta do to survive. It is our prayer that in the future, we will be able to add more foods so that we can rotate longer.  So, a big thank you to my dear friends! Hopefully, this will give us a better success.  It's not delicious in any way shape or form, but right now it's about health and survival not taste. :P

The second part to our uphill climb in the last couple of days is the emotional component.  I think even with the little that we know about my future treatment plan, we are just plain overwhelmed.  Brian and I were sitting on the couch hashing out what the future might look like and let's just say it was pretty mind boggling.  We have so many factors that go into my upcoming treatment.  Part of it has to do with financial resources as the future IV/medical treatment that won't be covered by insurance will cost an upwards of aprox. $30,000 (that is probably a really low estimate).  For those of you who are reading this and are curious as to why it won't be covered by insurance, go to the link at the top of the page titled "About Lyme Disease".  This will give you a better explanation.  Like most people, we definitely don't have $30,000 just sitting around waiting to be used,  so it is a big scary number to us.

Another issue that we are facing is just the practicality of how this will be done.  Brian's schedule is ramping up in the next week and he is booked solid as far as auditing assignments until October.  He won't have the ability to ask for a lot of days off.  At the same time, Brian is trying to finish 3 self-paced college classes so that he can meet the CPA requirements of 36 accounting hours and at the same time study and sit for all 4 sections of the CPA exam.  He has a goal to finish this by July for a number of reasons that pertain to his future career.  When you add that to already what he has to carry which is taking care of me and everything to do with the house (cleaning, shopping, yard work etc.) and also the pressure of trying to get up to Phoenix for doctor's appointments and treatments, the word "overwhelmed" is probably an understatement.  Plus, when I start IV therapy, it won't be safe or good for me to be alone all the time due to how unpredictable and allergically reactive I am, so that is a big stressor for him too.  We don't know a lot of people down here because of the timing of when we moved to Arizona.  From the beginning, I was too sick to attend church, so we haven't been able to meet or fellowship with other believers to have that support.

Finally, we are not sure what I should attempt or will be able to do physically or practically.  Currently, right now, I work part-time tutoring students in South Korea in English over the phone. I LOVE my job. It's a perfect fit for me and I would not want to quit as these types of jobs are really hard to come by.  However, I am not sure how this will all play out with trying to make trips to Phoenix and the grueling treatment that has the potential to make me so much sicker then I already am.  Then, I have schooling to decide about.  I am not sure how I will be able to work on my class load for my MA degree.  For reasons that I won't explain, I have to be able to work part-time and go to school in order to attempt to afford treatment.  We are stuck in this vicious cycle of no options.  Ughhhh!!!!  This is the part of our uphill climb where we feel like we are hamsters running in that little wheel and not getting anywhere. :P  I say all of this not for sympathy or to whine, but more so that you can be praying for us as we try to navigate through all of these decisions.  It's so tough on so many levels.

Well, it's 6:15am and I need to go try and eat something on day 2 attempt 2 of the rotation diet. :)  I apologize for making this so long!  We really would appreciate your prayers in the next couple of weeks as we try new things, begin treatment and have to start making all of these tough decisions.  I have said over and over that our God is our provider and we believe that with all of our hearts.  He will provide ALL of our needs.  We are praying that God would guide and direct us down the correct paths and that through it all, He will be glorified.  Ultimately, it is the Lord that will heal me and whatever avenue He uses to do that, we know that He will be with us along every meter of that mountain.  Talk to you soon! I'll update after my appointment on Thursday!  Blessings!