Lay it all out...

Well, it was another night of only 3 hours of sleep. This time, instead of fighting it, I decided to watch some movies. I had a much better time than stressing because I am so tired, and knowing my body needs sleep, but it just won't. The good news is that once again, by Sunday evening this past week, I was sleeping through the night and the pattern continued until Friday. That is a gift, so I hopefully it will continue. Thank you for your prayers!!

Brian actually had to go to Phoenix on a last-minute business trip on Thursday morning. So, it was just Toby and I for about 24 hours. We made it! :) That probably seems dumb, but I was taking the evil drug (Rifampin) which brings some terrible side effects. However, I was able to successfully make it through the whole time without having anything scary happen. That was a blessing since Brian was a couple of hours away. We think the next time he has a trip is a 4 day training session in June. The longer periods that he is away are harder. Can you imagine all the prep that has to be done before he leaves? I can't really leave my house and definitely can't cook my own food at this point (I react to the food cooking) and go shopping if I need something...lots of planning ahead. However, I have one AMAZING husband who takes care of me so well. I don't know what I'd do without Him, and I am one thankful wife. Jesus definitely knew what kind of man of God I needed when He handpicked Brian to be my husband. Thank you Lord!

There has been a couple of times where I have been pretty vulnerable on this blog. It's always hard for me to do since I am a people-pleaser by nature. :) I always think that everyone wants to read those "encouraging posts." So, I need to do my best to fulfill those wishes. :) However, my life is always touched by the blogs that I read where I see the struggle and then the triumph through the Lord. Hopefully, this will minister to others or at least let you know that you are not alone as you battle!

The last couple of days have been pretty difficult. I wouldn't say I have had an over abundance of horrible symptoms, but maybe that makes it worse. I still feel sick, but not sick enough to keep me from thinking or more like stewing. :P I think it was a combination of things. I am turning 31 tomorrow, and it's hard to look at our life and see how different it is from what we assumed it would be. Brian and I had always been the couple who wanted kids pretty quick after we got married. We were both teachers and taught the 3 and 4 year old Sunday School class when we were dating. We loved hanging out with the families that had kids at our church. Children brought so much joy to our lives. Sometimes, we would take our friends' kids to a movie or out to eat just for fun! I always felt like I was made for teaching and to be a Mom; however, life took an unexpected turn and now we are here. I am getting older by the day and still sick. Also, we have that decision to make if I do get well whether we want to take that chance of possibly passing on Lyme and all the co-infections to our children. It's a lot to swallow.

Along with those thoughts, I had to deal with my "every six-week" break down where I am just sick and tired of being sick and tired. I am thankful to be off of IV for now and it seems like the oral zith is keeping me stable. Praise the Lord! It's nice to not have the stress of IVs and all the risks that are associated with them. However, we just still are not seeing any gains. Social media is great, but it's hard when you don't see that many people getting well. I did see one girl this week, but she is on a different treatment plan than I am. So, that makes you wonder if you are on the right treatment path. I wish I could tolerate more supplements and herbs. I think we would take the more natural route than the antibiotic route, but so far, I react to all the natural stuff. So, we are stuck on this path for awhile. We are desperately praying and hoping to make some headway or at least see a little glimmer of hope, but so far, we haven't seen it yet.

On top of all that, as I said in my last post, I am just not making enough money at my job. Well, I am on the job hunt for something I can do out of my home, but that makes me worried as to whether or not I will be able to handle something new. The stress of learning a new job and also making it through the interview process with feeling sick and also not always making sense when I talk is a little overwhelming. I think I just struggle so much because I know that I was made to teach. I am good at that, but there just isn't anything out there. So, I am stuck finding at-home jobs that are pretty much non-related. I need to be able to work and make a decent living because Brian and I are in debt up to our eyeballs from medical expenses, but it looks like God just hasn't opened that door yet. As of Friday morning, I had applied to about 10 jobs in the last two weeks and hadn't heard a word from any of them. I am definitely over qualified with my grad degree and all of my work experience for most of them. However, I hadn't heard a peep. Now, I know the economy is bad and a lot of people are searching for work, so I shouldn't expect more, but it just added onto my frustrations for the week. We also found out that we might have a possible looming insurance disaster on our hands.

So, to explain my title...on Friday morning, I just broke. I had one of those "heart to heart" venting sessions with God. In the last year, it has been an uphill battle to fight to "keep the faith" when everything looks so dark around us all the time. It seems when Brian and I start to make some headway, we just get knocked down again. Not the, oh we hit a little bump in the road...nope it's usually like everything crashes around us. I really don't know why the enemy thinks we are so special to always want to hit us from every side, but boy oh boy is the battle real. I spent time Friday just pouring my heart out before the Lord and crying my eyes out. I kept listening to the song that I posted last week by Laura Story called "Blessings". It just hits home on so many levels. That song describes our journey exactly. All of our feelings, thoughts, and struggles are described in those lyrics. I praise God for that song! I didn't have any "ah-ha" moments during my venting time, but it was just good to be honest with the Lord about my feelings. I think I try to hold everything in and have the "good Christian attitude" all the time because that is what I am supposed to do. However, our Lord is real and He wants us to come to him with everything even if it's to express anger and frustration. I did feel a lot better after journaling and reading the word. A verse that stuck out to me was...

"BE MERCIFUL and gracious to me, O God, be merciful and gracious to me, for my soul takes refuge and finds shelter and confidence in You; yes, in the shadow of Your wings will I take refuge and be confident until calamities and destructive storms are passed. I will cry to God Most High, Who performs on my behalf and rewards me [who brings to pass His purposes for me and surely completes them]!" ~Psalm 57:1-2 Amplified Bible

I have to tell you that later that day, I did receive 2 requests for job interviews and also an e-mail I had been waiting on from my current boss who said she could train me for another tutoring program so I can get more hours. So, God was listening, and I saw His "blessings" unfold before my eyes.

I don't want this post to be a discouragement. I want it to encourage you to know that we serve a God who cares about all of our feelings, not just the good ones. So, no matter what you are going through, run to God. Seek Him first, and I pray with all of my heart that His "blessings" will abound.

I am going to post the song that I talked about last week again. It has been my lifeline this week. It has helped me to hold on, when I just wanted to give up. Remember, to listen to the song, you will need to push pause on my blog music player on the bottom of my page. Thank you for walking this journey with us. May God touch your life in a real way this week.

Another early morning or late night...it's all the same in insomnia land!

Sleep...What is that? I'm beginning to lose the definition. My body is deciding that 3 hours of sleep is what it needs instead of a whole night OR that the time to sleep is in the day. This does not work great with my treatment, work and school schedule. I am trying to make the best of it and go to sleep when I am tired even if it's at strange hours, but then I think that further enhances the "no sleep at night" issue. What a mess! I am beginning to see a pattern though. It seems like the more Rifampin I have in my system, the less I can sleep at night. Thankfully, Sundays and Mondays are usually good sleeping days. I just wish that I could have 7 good sleeping days instead of 2. Maybe, someday! :P

Let's see...I don't have a ton to report. I haven't started on the herbal protocol yet. I am still waiting on my doctor's office to send it to me. I sent a fax for the request last week, and haven't heard a word. So, I will probably call them on Monday. This week was a normal treatment week, but....wait for it....(I had to add that in for those who watch the show "How I Met your Mother", lol), it is HOPEFULLY my last week of IV antibiotic treatment. In my previous post, I explained our reasonings for wanting to switch to orals (finances, finances and more finances...oh and also that we aren't seeing big gains). So, tonight I tried my first oral azithromycin pill and so far no reactions. I tend to react to the inert ingredients, but this was from a special pharmacy, so I am guessing I will tolerate it okay. Now, the big thing will be whether or not I stay somewhat cognitively stable on oral azith. I have one month of INTENSE school work left. I have a ton of projects and papers, and I can't afford to be out in la la Lyme land. So, we are desperately praying that this works. We could probably afford to do one more month of IV if we had to. It would be a stretch, but we could make it. However, we would rather save our funds for future doctor's visits and oral medications. So, please continue to pray for the next two or three weeks, and that I wouldn't notice a change in my symptoms.

The lovely devil pill (my nickname for Rifampin) is still reaping havoc. Brian and I were talking tonight and we think that quite possibly I am bouncing back from the weekly hit sooner these days. It's hard to tell when the end of the week gets so bad on that drug. We have also discussed the possibility of what to do about this drug. This will be my 4th week, and we haven't seen that much of an improvement. It could be because I need to take it longer each week for us to see gains (Oh Lord help me) or that it's not doing anything, but making me super ill. It's so hard to know what to push through and when it's time to throw in the towel with Lyme Disease. The flare of symptoms can mean that it's working or it can just be how your body reacts to the drug. Who the heck knows! Originally, they wanted me to take it 4 days instead of 3 and although that scares me to death to think what 4 days of the red evil pill would do, we might try it next week just to see what happens. It can't get any worse than it already is right? I am saying that to convince myself. Ha!

Brian got his blood drawn for his Lyme test on Monday, and it was sent off to Igenex lab. We should hear something in about 2 or 3 weeks. We are praying desperately that Brian does NOT have Lyme. I have no idea how we would afford treatment for both of us. I am having to lay that at the altar daily. We are still waiting to hear back about his last section of the CPA exam. Hopefully, in the next week or so he will get an e-mail letting us know he passed! I am sure he did. He is Mr. Smarty Pants. :) He is still doing very well at work and is about to run his own auditing job in a week or so. That is really exciting for him as it means that he is moving up on the responsibility ladder. I am so proud of him!

Well, spring is almost here and the weather is gorgeous. It's about 75 to 80 degrees now in Southern AZ. Love it! I have not been able to get out much because of how sick I have been lately, but just knowing it's beautiful out is refreshing. I have to admit that I have been really restless lately. I guess I am just tired of being sick, and I want to be out doing what I love which is teaching little kids. I think part of it stems from the fact that after this semester, I am one class away from graduating with a master's degree in education. With the state of our current finances, no matter how sick I feel, I have to work at least part-time. I have been looking for online teaching positions and have been coming up with nada. It's frustrating to now have the qualifications, but to not be able to use it because once again, my illness is holding me back. My dream would be to be back in a classroom, but I got this degree so it would open an opportunity for me to teach online. I would be qualified to design and implement E-learning programs K-12, college and/or corporate; however, the instructional design process does not appeal to me at all. I know how to do it, but the pressure that comes with those types of job would probably kill me. I just don't think I am cut out for that type of work. I am a teacher and will always be a teacher. So, back to my search...I have found a couple of opportunities teaching elementary students online, but once again, I can't do them because you have to be available for home visits in your assigned area and also organize class get togethers and field trips. SO FRUSTRATING!

Since I am obviously stuck at home for the time being, another area I have considered getting back into is virtual training. I was a corporate trainer for one year and loved the job, but just not the program I was training for. However, usually to obtain those jobs, you have to already be established with a virtual customer service firm and it's a couple of promotions away from the entry-level position. Where does that leave me? Well unfortunately, I need to find a new job that I can do out of my home. I love my current position which is tutoring South Korean students in English; however, the pay is extremely small and has become very unreliable. It makes me sad because this job is a perfect fit for me while I am getting better, but I am just not making enough money. I have applied at a couple of places to see what doors God opens up. Once this semester is over, I have also considered contacting my current company to see if they would have any potential training or management positions, but again, they are not the most reliable, so I am not sure if I want to risk it. Ugh, so many decisions. If you could just praying that God would guide and lead, I would appreciate it. I would LOVE to find a teaching position, but I am open to whatever God would have me do and if it's getting back into the "virtual call center scene" even though I will dread it, I will do it for our family. In general, working is difficult, but the best thing about working from home is I can do it from my bed. :) I am thankful that God has blessed me with work-at-home positions as I do know they are hard to come by. I am just praying that God is preparing the perfect job out there for me. I want to make a difference even with my current restrictions.

Before I go, I wanted to post a song that I found this week. It has been a big encouragement to me as I have wrestled with life being in what is seems like a perpetual hold. A quick background...the artist is a young girl in her 20's. Two years after she married her husband, he started developing cognitive issues and would fall asleep at the most random times. They went to the doctor, and he was diagnosed with a terminal brain tumor. They were devastated. Through a miracle, he survived, but he now has a number of disabilities as result of his surgeries and treatments. In an interview, Laura Story talked about how on the one hand they are in awe of all that God has done and are so thankful for the blessings God has given them. Her husband is alive and they are forever grateful. However, on the other hand, they sometimes still struggle with the fact that God did not bring healing in a way that they would have wished and that life on a daily basis is challenging and definitely not what they had dreamed it would be. Her underlying message was that God brings blessings into our lives, but sometimes they are in the form of trials. It's what we do with those "blessings" that counts. We can get mad and angry at all that we lost or we can thank God for the opportunities He is giving us to grow and learn to trust Him more and more through the obstacles we face. What are your blessings? Have they come in the form of raindrops? What is your response?

Below is the video. I would encourage you to listen to the words. I hope they will minister to you as much as they did me. Remember to hit pause on my music player at the bottom of this blog so it doesn't interfere with the song. Blessings!

Pressing on, forging ahead...

Hello Folks! The last 24 hours have been so sad. Please join with us in prayer for Japan. It is so incredibly devestating to see all the destruction. May God use this tradegy for His glory. Please be praying for the families who lost loved ones.

As far as our week goes, it was not the best. However, God has convicted me a lot lately that my joy should not be in my circumstances. I think too often when you are chronically ill, it's easy to let the disease consume you and affect pretty much everything in your life. However, I want to share something that I read recently on my dear friend Candice's blog...

"Now I realize though that your world is what you make it. My world may be small, full of monumental obstacles, and entirely stripped of what it used to be, but it was never going to grow if I didn’t accept it. Once I did, I found that though my world is quite difficult and far from normal, it’s unique, and there are still plenty of opportunities to enjoy it. That is, if you’re looking in the right places."

This is so true. Our world is definitely small with my restrictions and illness, but there is joy in our lives. We just have to work a little harder to find it, but it is there. I know that our main joy each day should radiate from the love that we have for our Lord Jesus Christ. It's hard to do when you have to deal with horrific symptoms day in an day out and the stress we must face; however, that does not give us an excuse. We are going to work hard to find joy in the Lord and the little things. Now, you can hold us accountable! :)

On to my doctor's appointment. Well, this appointment didn't go as well as I would have liked it to. I still haven't seen the main doctor yet. My appointment with him is on May 6th. I have seen the PA in person and have had one phone consult with her. This particular appointment was with the naturopathic physician that also works with the main doctor. Only him and the PA do phone consults. I guess the frustrating part was that he didn't know my case (which is not his fault, I have never seen him in person), and we were having to make some treatment decisions. It was hard to do that given the obstacle we were facing.

Our first question was whether or not to stay on Rifampin. This drug has really hit me hard and caused a lot of bad side effects. However, we didn't want to stop it if ultimately it is the drug that will get me well. At the same time, we didn't want it to wipe out my system so bad that it would do permanent damage and take me to a place of no return when it comes to my chemical and allergy sensitivities. The answer was that in his opinion he thinks it's fighting the Bartonella big time, so I need to try and stick it out as much as I can. He gave me a detox idea that I probably will be able to tolerate, so hopefully that will lessen some of the symptoms. I am praying so because last night I didn't get any sleep and at around 5:30am I was laying in bed feeling like I was suffocating...major air hunger.

Our second question was about the future of my treatment protocol. We have known we can't do IV forever. As we have reviewed our finances over the last month, we have come to conclusion that the time to pull the plug on IV is soon. I have been on it since September and although it keeps me stable (especially cognitively), we haven't seen much overall gain. If oral azithromycin can keep me stable, then we need to try to move away from IVs. The ND I was talking to wanted me to try IV Merrem before we stopped IVs, but since my insurance has quit paying and the drug would cost more than $1500 per month, we just can't do it. I will still keep my port cath in just in case we need to go back to IVs. It's important I don't decline too much cognitively so that I can keep up with my school work. So, we would definitely appreciate big time prayers for the next two weeks. Also, my stomach doesn't handle orals very well, so please be praying for that too.

We are going to try to add two herbal protocols A-Bart and A-L Complex that is part of the Byron White protocol. I have heard a lot of success stories, but that it's hard to take. So, that would be another prayer request. I also need to get on a couple of other meds along with a Vitamin C that would help my immune system. However, this will all be challenging because right now I am reacting to my own food that I can normally eat. So, God definitely needs to move!

That's all for now. I hope you have a wonderful weekend. Remember to find joy even in the little things! Blessings!

Hello Insomnia! :P

Hello all! Well, it's about 4:58am in the morning, and I have yet to fall asleep. The insomnia lately has been a killer. Last week, I had 3 nights where I didn't fall asleep before 6am and one night where I didn't sleep at all until a nap in the middle of the day. I think it is directly related to the fact we are treating Bartonella with Rifampin; however, it is not fun. I am just exhausted, and I can't afford to spend my days sleeping away because I have big time projects to work on for school.

Before I give you an update, I wanted to let you know that I am still collecting data for my graduate project on Lyme Disease. So, if you are a Lyme Disease patient and you want to participate, you can access my project blog via this link: Lyme Disease ~A Hidden Epidemic.

Now for the update. Well, between the lack of sleep and the horrible symptoms caused by adding the drug Rifampin, it has been quite the week. Originally, my doctor wanted me on 600mg Tuesday through Friday. However, all that I have still been able to tolerate is 300mg Tuesday through Thursday. This drug really sets off my immune system. Brian and I suspect that it is Bartonella that has kept me sick all these years because I have reacted so strong to this medication. The symptoms I experienced when I first got sick are back plus more. It gets worse every time I take it, and by Thursday my body is so set off. I react to every carbohydrate and things in the air and things that touch my skin cause me to break out. My skin is so painful ,and even a little scratch will make me break out in a rash/welt.

At the same time that is all going on, I am constantly dizzy/lightheaded, nauseous, achy, have unsteady blood pressure, and I am experiencing full body jolts. The jolts are the worst believe it or not. It literally feels like I am being struck by lightening and when it happens, I can be laying in bed and my whole body will jump. I feel like I have been shocked. It used to only happen once or twice a month, but now I get the lovely experience of it happening at least once a day. Last Friday's was the worst as it didn't seem to end like it usually does after a couple of seconds. For about 30 minutes I felt like I had my hand in the electric socket (which I did not, lol). I can't describe the pain, but I felt like I had millions of little knives in my skin. It was not a pleasant experience. A couple of times throughout each day, I also have had head jerks. It's always a little defeating when these types of symptoms pop up; however, I try to always see the positive side in it that maybe we are making headway in fighting this disease. :) I hope so!

On Tuesday, I will have a phone appointment with one of the doctors that works with my main doctor out in California. It couldn't come at a better time as Brian and I have quite a few questions about my treatment plan and what to do with Rifampin. We need to figure out if it's okay for me to push through Rifampin with how it sets my system off so bad or whether we will do permanent damage if we push through like causing my already bad Multiple Chemical Sensitivities and food allergies to get worse. We also need to see what we are going to be doing with IV. We feel like I am not making any progress with the IV Zith, but it IS keeping me stable. I decline pretty fast when I am off of it. So, we need to figure out how we can help me to gain ground because honestly we don't have too many months left where we can afford to pay for the IV costs. We are praying big time that this doctor can help us. I don't see the main doctor until May 6th. I am hoping that the other doctors in the office aren't just helping us coast until we can get to our appointment. IV costs are too expensive to waste it on coasting.

So, if you could be praying for that appointment, we would really appreciate it. The good thing is Brian will be home, so I think I will have Brian talk to him after I initially report my symptoms. I am pretty bad at getting my facts straight and remembering details these days which brings me to my next prayer request. The next two months are going to be really tough school-wise. I have made it so far, but I have a huge project this week that is due on Sunday. I haven't even started and when I don't sleep at night and have to sleep during the day, it's so easy to fall behind. This specific project is going to take a TON of hours. I can feel my anxiety already climbing. So, if you could pray that God would multiply my time this week, and that I would sleep at night, I would really appreciate it. This is all such a struggle, but only having two months left is a blessing!

Brian is doing okay. He has had a ton of headaches and neckaches lately. Some of his headaches have been getting really bad where the pain medicaiton barely makes a dent. This is unusual because most of the time Brian is extremely healthy. However, in the last couple of months that has changed a bit. So, we made the decision that we are going to go ahead and pay the money to have Brian tested for Lyme Disease. There is some evidence that it can be passed from husband to wife and vice versa. So, if he does have Lyme Disease, we would rather catch it now before he has had it for too long and he starts getting sick like me. Hopefully, we will be sending off the test one week from Monday and then it takes a couple of weeks to get the results back.

We haven't found out the results of his CPA exam yet, but I am sure he passed it. He actually just got selected to run his own auditing job. That is exciting as it is a lot more responsibility than just being a staff accountant. He will start in the next couple of weeks, so keep him in your prayers. I asked if he was nervous and of course he is not. :) He will do amazing and it is such a great opportunity. I know he will shine!

Well, I need to go try and get some sleep as I have to wake up in 1 1/2 hours to go to an appointment. Yikes! This day is not going to be fun. Anyways, thank you so much for all of your support and prayers. I have been overwhelmed at the response I have gotten for help with my graduate project. It has been awesome to see God work, and I am praying that God will use it for His glory.

I will post a blog toward the end of the week/weekend about my doctor's appt. It may be earlier than that if I have night after night of insomnia. Let's hope not though. Blessings!

Research, Thesis, What??!!!

This will be a different kind of post because I need people to help. Before I start, I want you to know that finally, by the 4th day off of the drug Rifampin, things started to come back around. That was one wild ride I tell you. However, just as things start to look like my body is not in the midst of a war zone, I start taking the drug again. My first dose was last night. Now, I am thankful that we haven't reached Friday's all time low; however, last time, it took about 3 days to build up in my system, so I am not holding my breath on this one. However, I am praying with all of my heart that maybe last week was the worst of it.

Now onto my graduate project. For those of you on Lyme Friends or Facebook, you probably already saw me post about this project and might even be sick of hearing about it at this point. J/K :) Anyways, as I mentioned a couple of weeks ago, it is my research semester. Boy, is it putting me to the test. Working towards this master's degree has been demanding up until this point, but conducting this research study and writing this data-heavy big paper is certainly stretching me in many ways. However, I am not going to quit and give up now. I look at this project as challenge, and I am ready to take it on. :) I have decided to do my big research graduate project on...

Lyme Disease: Investigating the Impact of Social Media on Patient Education.

I can't do this project alone. I need to collect quite a bit of data in a couple of different ways. So, I need your help! The more participants we have, the more convincing it will be. My professor said a study like this has never been done, so we are on the frontlines! :)

Below are ways you can be a part of the study...

1. If you have Lyme Disease, would you please fill out a survey? I need about 50 to 100 participants. So far, after posting this one night, I have about 14 surveys completed...so we are on our way, but have quite a ways to go. The survey is completely anonymous, and I promise it's short. It's hosted on my project blog. The direct link is: http://lymegradproject.blogspot.com/p/survey.html.

2. The second way I am collecting research is through patient stories. Most of us have our Lyme Disease journeys typed up for one reason or another. If you would be willing to let me share these stories on my project blog, that would be yet another way our voices can be heard! I can post them anonymously or I can add your picture and your name to them. If you are willing, please send them to lymegradproject@gmail.com. If you would like to see an example, you can read my story: http://lymegradproject.blogspot.com/p/your-stories.html.

3. Finally, I will be holding a weekly discussion activity for the next couple of weeks. There will be two places where this will be hosted. The first place will be on my project blog: http://lymegradproject.blogspot.com/p/your-thoughts.html. The second place is on my dedicated Facebook page: http://www.facebook.com/home.php#!/pages/Lyme-Disease-Graduate-Research-Study/192006907500201. Make sure to like this page if you are on Facebook so you can get up to date news about the project!!!

You can participate in any or all 3 activities! Thank you in advance for your assistance!! Please pass the word along to anyone you know who can participate. This is another opportunity for us to help raise awareness about this disease!

I'll try to make a post later this weekend to let you know how this week's adventure went. Since I will most likely want this information to be up for awhile, I will just make an "Update" section at the top of the page for you. I was thinking the other day, maybe, I should start titling this "Adventures in Rifampin-land". It's crazy here! I wouldn't recommend visiting. :) Talk to you soon!

Dawn :)