MeRrY ChRiStMaS

Christmas is almost here! I am so excited.  I love this time of the year because it's such a reminder of God's overwhelming love that He has for us.  He humbled Himself to come to earth in the form of a precious baby knowing how His life would end, but knowing our great need for a Savior.  We don't deserve one small tiny ounce of this gift, but it's offered to each of us with no strings attached. It is my prayer that those who believe in Christ Jesus will experience His presence in a new way.  It is also my prayer that those that don't know the Savior will see their need and will meet him so that this Christmas will be the beginning of new life.

I will give you a quick health update.  We have been battling my liver enzymes, but it seems like they are on the downward slope.  The week that I didn't take any antibiotics (to give my liver the best chance of recovering), caused me to go downhill pretty fast in the area of my chemical/food sensitivities and also cognitively.  We decided to not take another week off completely, so I only took amoxicillin and thankfully, that helped turn things around a bit.  We were able to restart azithromycin this week; however, we are struggling to find things that I can tolerate to help my liver detox which is the cause for the increase.  I react to milk thistle and Advaclear from Metagenix.  I have been able to tolerate the Pekana Labs Detox system, Amino D-tox, and we are going to try apple pectin.  However, if any of you have any other low-allergen ideas that would help my liver detox, let me know!

Some prayer requests for us...

• Please keep praying that my liver enzymes would go down and STAY down. 
• Brian and I are trying to locate a local physician to take care of regular health stuff and also to be a point of contact in an emergency in Tucson.  We have yet to find anyone that doesn't run when they hear the word Lyme Disease or flat out refuse to even see me once they see those "words" on my paperwork. We have a couple of leads, so we are desperately praying that one will work out.  It's hard for me to go to a lot of appointments and places these days, so the quicker we find someone the better.
• Brian and I are taking a trip to San Francisco, CA.  I can't share a lot about it right now, but we would appreciate your prayers.  Traveling is really difficult for us, but God has opened up a door and we feel like we need to walk through it.  We will leave REALLY early on Dec. 26th and will get back on Dec. 28th.  Please pray that my body will remain stable and that I will be able to stay in the hotel without any allergic reactions or problems.  In about two weeks, I will be able to share with you a TON more. :)  Right now, we would just appreciate your prayers.
• Please be praying for Brian's health.  He seems to be on the edge of getting sick which comes with all the pressure he must carry between work, school, studying for the CPA exam and all of the household duties.  Every time I think about all that He does, I am so amazed at what an incredible man I married! Thank you Jesus for such a wonderful gift!  Please also be praying that he will get some quality studying done.  It's been hard for him over the holidays with family coming and lots of other responsibilities. 

Thank you for praying! We hope that you will have a wonderful Christmas with your friends and family.  May God bless you abundantly as you celebrate Christ's birth, and as you begin the New Year! See you soon!

My Lyme Disease is not the IDSA Lyme Disease ~ Dawn

This week, an article was written in the Chicago Tribune about Lyme Disease. Below is my response...

I am writing today as a response to the article that was printed Monday in the Chicago Tribune titled “Chronic Lyme Disease: A Dubious Diagnosis”. You can access the article via this link: http://www.chicagotribune.com/health/ct-met-chronic-lyme-disease-20101207,0,5671843.story. This article is completely bias skewing scientific research, slandering Lyme Disease physicians who put their lives at risk to help very ill patients, and even personally attacking patients who are currently suffering from the disease. I am appalled that a news reporter would go at such great lengths to destroy the Lyme Disease community.

I have Lyme Disease. Here is my story. I have been sick for almost 8 years. I went undiagnosed for 7 years. In 2002, I attended an outdoor music festival in Minnesota. I came home from the concert not feeling well. I don’t remember being bit by a tick or getting the rash that is usually a sign of Lyme Disease; however, I came home with extreme fatigue and flu-like symptoms. I went to the doctor and they put me through every test you can imagine, and everything came up negative except that I had a high white count. I was sent home with amoxicillin (signaling a bacteria infection) and was told to rest. It took 3 months for me to recover; however, little did I know, this was just the beginning.

In the meantime, I got married, and was hired upon college graduation to be the director of a brand new preschool at my church. This was my dream job! I started working in November of 2003 and loved every minute of it.  Then, out of the blue, one year later, my world came crashing down. I lost 30lbs in six weeks, and started experiencing extreme joint and bone pain, migraine headaches, fatigue and horrible chemical sensitivities.  My food allergies became so severe that I could only drink one specific kind of water and eat cooked chicken purchased from a specific store. Anything else sent me to the hospital with horrible allergic reactions.  We were sent to the Mayo Clinic for two emergency visits.  Their answer to us was to give me high doses of steroids to control the allergic reactions and send me to a psychiatrist to help with the anxiety.  Anyone who would have been in my shoes at that time would have had anxiety.  However, no one seemed to listen.

The Mayo Clinic was 7 hours away from where we lived. So, when all of my appointments were done, we left with no diagnosis and a lot of medical bills.  We decided to leave Mayo after my last appointment and drive home through the night since staying in a hotel was so difficult for me and my new chemical sensitivities.  I could not drink any bottle water or tolerate any other water source, so we only made it 3 hours away from Rochester, MN before we had to stop in a small town and visit the ER so I could get IV fluids.  It was horrible.  We couldn't run the heat in our car because of the exhaust that would come in from the other cars and trucks on the road.  I was so chemically sensitive that even a small dose of it would send me into an asthma attack.  So, the heat was off the entire way.  I think it was below 20 degrees that night.

If you know anything about Lyme, adding steroids is a really bad idea.  If they would have researched into why I was so sick instead of trying to put a band-aid on my current complaints, they would have realized I had Lyme and they would have never given me medication that suppresses the immune system allowing the Lyme bacteria to multiply at warp speeds.  It was this mistake that started a never-ending tail spin of debilitating symptoms that literally made me think I was sometimes in Hell.  I know that might be harsh, but the pain was agonizing and the allergic reactions were horrific.

I remember one morning, I got up at 5am to eat my chicken and to drink my water.  I had to do this while my husband was getting ready to go to work so that he could be there if I reacted, and we had to go to the hospital.  This one particular morning, the bone and joint pain were so bad that I was lying on the floor in a ball and could not stop crying.  I wanted to die, and I remember praying that God would take me.

At times, my reactions were so dangerous that I would starve myself all day until my husband got home at 4pm because everything I put in my mouth made me think it was my last meal.  You don't know fear until you are sitting just waiting for your throat to close off, but knowing if you don't eat, you are going to end up back in the hospital.  At this point, I was reacting to all chemicals so a hospital was one of the worst places I could go with all of their cleaning compounds and disinfectants.  No one could visit unless they completely detoxed themselves (which in our scented world is next to impossible).  The more reactions I had, the more steroids I was given.  The more steroids I was given, the sicker I became.  We were told over and over that we had to wait it out.  So, we waited and we waited, but life did not return to normal.  We were now living a daily nightmare.  It was a nightmare made up of isolation, horrific symptoms and no answers.  For obvious reasons, I had to resign from my position at the preschool. It was my dream job and it killed me to have to say goodbye.  We then proceeded to see over 20 specialists all over the United States, but still were given no diagnosis.

It was suggested we move to a better climate to see if my health would improve. So, we packed up everything we had and left everyone we knew in Nebraska and moved to Arizona. We saw more specialists once we arrived, and still no one could give us any answers. My health was deteriorating with each passing year. I was housebound because of my symptoms. I actually had a physician say to me “I just don’t think we are going to figure this out”.  My doctors seemed to "move on" and they wanted us to also.  Not a great feeling to be extremely ill, but to be dismissed by doctor after doctor.  My husband's question to them was "how are we supposed to move on, when she can't leave the house?"  They didn't ever answer that question.

It's hard to grasp the kind of restricted lifestyle we were having to live on a day to day basis.  I can't tell you how many times it was suggested to me to get counseling.  After so many times I started thinking, maybe they're right...maybe nothing is wrong with me and it is all in my head.  In fact, I began to get excited about that possibility because then there would be an end to the pain and isolation.  However, every time I tried to "be normal", I paid for it physically.  Deep down inside, I knew there had to be a reason why a 25 year old's life went from a dream to a nightmare. I knew something was seriously wrong, and so did my husband.

Finally, in April of 2009, we found a physician who specialized in the diagnosis and treatment of chronic illnesses, and I was diagnosed with Lyme Disease. I was baffled that one bite of a tiny insect could do so much damage to a human being.  It also devastated me to know that if my family physician (the one who treated me for a bacteria infection when I came home from my trip to MN) would have just given me a months worth of antibiotics, this whole thing could have been avoided.  I was angry and frustrated, but then you can't change the past.  So, what did I do?  I sought out treatment from one of the top Lyme experts in the field.  I was told I had a long battle ahead of me as the bacteria had ravaged through my system so long that it had done a lot of damage. Personally, that didn't bother me because I was willing to do whatever it took to get well.  For the first time in a long time, I actually had hope that life might be different some day. 

Treatment is hard and the financial and physical obstacles are quite challenging. The IDSA guidelines make it extremely difficult to not only get diagnosed and to obtain the proper treatment, but also for patients to be able to afford the necessary medicine because insurance companies refuse to pay.  Not only do we have to fight the battle to get well, we have to fight the insurance companies to pay our claims and also have to fight most of the medical community because of their belief that Chronic Lyme Disease does not exist.  It's exhausting and frankly some days, I just want to give up. However, I am not a quitter.  There is not a quitting bone in my body.  I wish I could say that I was well right now and already be one of those "success stories"; however, like almost all Chronic Lyme patients, you don't feel great after you complete your first, second or even third month of treatment. Wellness is a process and for some it happens quicker than others.  I am only in the beginning stages.  However, I know with all of my heart that this road I am on will help me regain my health and when I do, I will once again be able to eat a bowl of ice cream, go out to a movie with my husband and travel to see my family and friends.  What a day that will be!

I would ask you to please research this story and show the truth. The lives of those who have Lyme Disease are being destroyed. Patients have lost jobs, houses, and the support of loved ones all because the medical community has decided that this disease does not exist in a chronic form. It baffles me that every day millions of research money is dedicated to cancer, MS, Alzheimer’s and other diseases, but very little is set aside for researching one of the fastest growing epidemics in this country. The people of the United States need to hear the truth about this disease, not only so patients will be protected, but so preventative measures can be taken to protect our loved ones from the bite of a tick and the havoc it brings.

~Dawn

It's December ~ My Favorite Time of the Year!

Happy December! I just love when December 1st roles around each year.  As I have mentioned before, Christmas is my favorite time of the year.  I love everything about it! Once December 1st hits, the radio starts playing Christmas music and there is a never ending stream of Christmas Hallmark movies on TV.  Of course, my husband makes a request we balance that out with football...I don't know why! :) 

We enjoyed a good time with my family at Thanksgiving.  My sister was unable to make it because of work and she was missed! The day after Thanksgiving we decorated our Christmas tree. We had to get a new fake tree this year because last year's tree was part of a mini-flood (long story, lol).  So, as with every new thing, it was a gamble as to whether or not with my chemical sensitivities we would actually be able to bring the tree inside our house.  However, I didn't have any problems.  Yay God! I would have been so sad if we wouldn't have been able to decorate this year.  We even found all of my Christmas Winnie the Poohs and were able to set them out on a ledge overlooking our living room.  I really should start putting pictures up on this blog. :) Maybe, I will before the holiday season is over.

SoMeThInG To LoOk FoR In ThE FuTuRe! -- I have decided to start making Lyme Disease awareness beaded bracelets. I am going to start with 4 designs and they will be made of Swarovski crystals and sterling silver beads. I have named the business "Hope Creations". It is my desire to help bring awareness about Lyme Disease while also doing something creative with my time while I am stuck in bed. :) A portion of the proceeds will go to "Turn the Corner Foundation" which is an organization that helps train physicians in how to diagnose and treat Lyme Disease. They are also involved at the medical research level. I am still in the process of setting up my website and getting the first set of bracelets made, but once everything is up and running, I will post here to let you know! :)

Well, as you might have noticed, I haven't blogged in awhile.  We have been working through quite a bit with my health and trying to sort through and make some tough decisions regarding treatment.  I think I blogged about reacting to the drug Flagyl.  I can no longer take that one. Then, we tried another drug called Ampicillin.  We thought I would be able to take it because I can take oral amoxicillin without any issues.  However, we were wrong and I had some major reactions during our "testing" period.  So, I have been only on IV azithromycin.  We were all set to add in oral amoxicillin this week because that seems to be a really good drug for me as far as hitting the Lyme bacteria, but on Tuesday, I got a message from my doctor to stop everything because my liver enzymes were elevated again.  Geesh...I wish my liver would cooperate!!!

Currently, I am off antibiotics until Monday and then I will get re-tested.  The azithromycin is starting to bother my hearing. It began a couple of weeks ago and I haven't said much about it to anyone but my family and husband, but it's getting to the point where it feels like I have cotton balls stuck in my ears all the time.  These types of drugs are known for affecting the hearing of some patients especially when it's administered via IV, so it looks like that one might be on it's way out the door too.  Not good...we need to be able to find some drugs that I can use that don't cause allergic reactions or bad side effects.  I am what you would call a "challenging  patient"...I am sure my doctor would agree. :)

As far as feeling well, I haven't felt the best either on the antibiotics or off of them.  I have been really tired and achy along with dealing with some cognitive issues.  The cognitive issues always ramp up when I am off antibiotics and I noticed them starting to get worse once we lost Flagyl.  Stopping antibiotics on Tuesday has definitely not helped.  My cognitive issues involve my speaking more than they do my writing.  By the evening, I struggle to complete sentences, I forget words and I do some pretty dumb things.  For example, this week, I accidentally put the ziplock bag of cooked pot roast back into the pantry instead of the freezer.  I didn't find it until 3 days later.  Now, for most people, this kind of thing might happen every once in awhile; however, you know it's Lyme when this stuff happens frequently.  It's funny and we have a good laugh about it, but it does get frustrating sometimes especially when I am trying to relay a phone conversation to Brian and he is not understanding hardly any of it. :P

We have seen small gains though and I want to make sure I comment on those.  I think the area where we have seen the most improvement is my nutrition intake. I think the IV Vitamin C and Meyer's Cocktails (IV B Vitamins) have helped a ton.

Not much else to report.  I have one final grad project due on December 12th that I have yet to begin working on.  I will start it this weekend.  I am such a procrastinator.  Brian is done with the first section of the CPA exam and should get the results sometime in January.  Now, he has moved onto working on two self-paced college classes and studying for the second portion of the CPA exam. I don't know how my husband keeps going, but he is one amazing man!

Here are some prayer requests for us:

• Please pray for us as we make some tough decisions regarding my Lyme Disease treatment.  We need to get on a better antibiotic regimen and also find a way to help my liver to detox so that my liver enzymes don't keep fluctuating so much.  Also, if you could pray for my liver enzymes to be in the normal range on Monday when we re-test, we would appreciate it.
• Please be praying for my doctor and that she would have wisdom on how to best treat my complicated case.  My body seems to never make it an easy job for anyone! :)
• Please pray that I will be able to continue to take the much needed supplements that will help support my immune system, enable me to detox and also some herbs that fight Lyme Disease.  Lyme Disease physicians are noticing that patients are responding better to treatment when antibiotics are combined with herbs that also fight the bacteria.
• Finally, please keep praying that Brian and I would have discernment about 2 decisions we are currently trying to make.  I wish I could share more right now, but we feel it's best to wait.  I promise as soon as I can, I will fill you in! Until then, we would really appreciate your prayers for wisdom and that God would guide and direct us down the path He wants us to take. 

Thanks for praying! I will try to not to gap so much like last time before I write an update.  Between sleeping, having company, feeling icky and sleeping some more, it's been difficult to keep up with everything.  I hope you are enjoying the Christmas season!

Blessings!
Dawn

Mid-November

That seems like a fitting title. :) My creativity is not present or I would come up with another one. So, this will have to do. I really am surprised it's "Mid-November". I have been doing IVs for 2 1/2 months and Thanksgiving is almost here...the Christmas presents are all bought (yes, that is the life of someone who can't leave the house and is stuck in bed a lot...lots of time to look for amazing online deals!). Christmas is just around the corner and I am ecstatic. I just love it! The music, lights, decorating our house (with stuff I am not allergic to obviously, lol) and the spirit of the season. There is just something about Jesus coming down to earth as a baby that still makes me take a step back in awe. It's so precious, sweet and tender. That's what babies are and to see God in that form is always a great reminder of who God is.

Most of you have realized since you probably check this blog every week, that I skipped last week. It was a pretty emotional week for me starting with a crying episode in IV room at my doctor's office and everything just kind of spiraled down from there. :P Every couple months, I just kind of hit a wall of frustration, discouragement and hopelessness. Take that on top of not feeling well and watching others improve, well...it can be frustrating to say the least. So, I decided to not make a post and wait until this week when my "outlook" was better. I am happy to say that even though my health hasn't really improved, my heart has and that is what is important.

Here is our general update. The week was pretty rough symptom wise. I was battling a lot of the same symptoms I listed last week on top of trying some new meds/supplements in which I had a few successes and some not so fun experiences..but I am alive to tell about it, so that is good. :) I did lose one of my IV antibiotics. I have been taking Flagyl consistently for 2 months (wow...I can't believe it's been that long!) and I started having allergic reactions to it on Thursday. I always try to push through the first couple reactions to make sure they are "true" allergic reactions instead of just my autonomic nervous system deciding to go crazy. However, they were and by Thursday night after doing an infusion for only 5 minutes, it was definitely time to stop.

Over the weekend, my husband and I watched and listened to some DVD's and CD's that we ordered from the latest ILADS (International Lyme and Associated Diseases Society) conference. The president of ILADS (who is amazing by the way) gave a couple talks on treatment methods and Lyme and all the co-infections and Brian took a TON of notes to talk to my doctor about.

Yesterday, we met with her to develop a new plan of attack and we feel more confident about our drug selections and herbs/supplements that I will be trying to get on. We are going to be starting a new IV antibiotic next week, and this week, I will be trying to get on some herbs that help Lyme. Please pray big time that I can handle everything. We are hoping that this is the missing piece to the puzzle and that we will start to see visible progress forward. We have glimpses, but would love to see big steps!!

We also talked to her about my diet. I have lost SOOOO much weight and in Brian's opinion, we are about 10 pounds past what looks healthy. I can't tell that much except for none of my clothes fit, lol. However, I spend most of my days in pajama pants, so I don't pay attention. I have been on a very restricted veggie, meat and fruit diet and recently we were able to add back in dairy sparingly. We walk a hard road because of trying to make sure I have enough to eat, but the things that would actually put weight on my bones like dairy products and fats, often feed the Candida. So, it's such a challenge. Anyways, the last couple of weeks I have hit a wall with this diet. I am starving, weak (probably cuz I have lost too much weight) and just mentally have a block. After talking to my doctor, she said we could SLOWLY try to add back in whole grain carbs making sure to only do one at a time looking for allergic reactions or how they effect my sleep pattern (when I got off carbs, I started sleeping better). Last night, I had a small serving of brown rice with dinner and it was heavenly! I will still be on a rotation diet, so I will have to be careful what I eat, how much and when, but I can't tell you how much it helps even mentally to be able to be able to add small healthy carbs back in.

God has also been doing something in our hearts lately. We have been on a LONG journey and sometimes over the last six years (wow, I can't believe it's been that long!) it's been hard to stay the course and keep the faith when life just looks bleaker and bleaker. Well, this past week has kind of woken us up. It wasn't any event or emotional/physical break through, but it was just the quietness of God's spirit ministering to us in a way that hasn't happened (or we haven't been willing to receive), in a long time.

Gateway Worship just put out a new CD that is amazing. It's called "God Be Praised" and I would HIGHLY recommend it. The song below is a song off of the album that has really ministered to my heart. Remember, to listen to this song, you will have to hit pause on my music player at the bottom of my blog. :)



In the song, it talks about how God is faithful, our healer and our protector. One line says "My God is like a fire defending me". I immediately got this picture of fire all around us and Jesus standing there as our protector. It jumped in my head out of nowhere and I guess I look at it as a gift because right after that, a passage in the bible (that I won't say that I have read often or that it would be an area I would randomly go to) stuck out to me. It was Zechariah 2. Within that passage I came across the verse (in the Amplified bible which is one that I don't normally read) that says...

"For I, says the Lord, will be to her a wall of fire round about, and I will be the glory in the midst of her" Zechariah 2:5 Amp

Do you know that the Amplified bible is the only version that states the verse like this? I have a app on my Ipod that has the bible in all the different versions. So, I can flip from one version to the next looking at the same verse. I usually don't read the Amplified version, but God clearly wanted me to hear this message, so I ended up there. It's so simple, yet so reassuring. God is our protector and our defender. Fire is impenetrable.  God's wall of protection will not be broken.  It was such an amazing and tender message that I still get choked up thinking about it.  God is so good. He is "Faithful"!

Well, that leaves me to some quick prayer requests.  First, my amazing husband is going to be taking the first part of the CPA exam this Friday.  Please be in prayer that his mind will be sharp and that he will remember the mountains of information that he has studied. I have confidence he will do awesome! Please just pray for peace and clarity of mind.  Second, please be praying that I can get on these new drugs/herbs/supplements (with no reactions!), adjust to my new diet and also that I am able to sleep.  Sleep has not been the best lately, but I think it's a result of a new drug that I am on.  Finally, we are currently praying about something that I don't feel like I can share about yet.  However, if you could just pray that God would give us wisdom and guide and direct us the way that He thinks we should go, we would appreciate it!

Well, that is it! Sorry it has taken me so long to write, but it wasn't until now that I felt like I was at a point that I could share all that has gone on lately. :)  I was too emotional and believe me, you would have not wanted to read an update or post on how I felt last week, lol. :)  See ya soon! Blessings!

One step forward, 10 steps back

I am going to try and type this even though it's 2:15am in the morning.  Crazy that I am awake huh? :0P Well, this week has been extremely rough and I had to change how I ran my IVs.  The drug that I am currently infusing (the last one for this week thank goodness) has to be infused 7 hours a part.  So, I do one in the morning, but then I save the rest until I am not alone which ends up being after Brian gets home.  That leaves me to have to do my final Flagyl at 2:00am.  Insane I know, but the good thing is, I have already been asleep for awhile and I just set my alarm, do the 30 minute infusion and then go back to bed (that's if there are no complications, which unfortunately I can't say that has been the case every night).  Here's to hoping that tonight I won't have any problems.

So, I am guessing you would like an update. :)  I am going to put a link to my blog post last week so that you can read about some good things that happened.  In fact, last week's post was full of positives.  Kind of nice for a change!  So, if you didn't read it, here is the link : Celebrating Baby Steps. 

Now onto this week, which took a drastic turn for the worst.  I feel like it's important to be honest with you and share about our struggles. I am hoping that I don't discourage you, but that I give you a realistic picture of the life of a "Lymie" in treatment. It's a lot of ups and downs and one step forward and 10 step backwards.  Not exactly fun and definitely does a number on the emotions.

Monday, Brian took me to Phoenix.  It was a last minute change of plans, and his work was awesome to let him fill in.  We had some issues to discuss with the doctor as over the weekend some not-so-fun things started surfacing.  We think it's my autonomic nervous system getting trigger happy because the bugs are being fought big time.  I was experiencing drastic temperature change issues where one minute I was freezing and the next minute hot, still losing weight even though I was trying to up my calorie intake (I would eat my dinner and 15 minutes later I would be starving) and I had adrenaline just coursing through my body like I was permanently hooked up to an IV line of caffeine.  Add that to the other symptoms of joint pain, severe headaches and head pressure and it was very unpleasant.  We asked my doctor to do a thyroid test just to make sure that with all the weight I have lost, that I hadn't switched into hyperthyroidism (I have lost a ton of hair too), but we got the results on Tuesday and everything was normal.  So, unfortunately, it's the Lyme bugs getting angry or that is how we say it around our house.  After this week, I would say those Lyme bugs have been throwing a freaking temper tantrum. :0P

Running my IVs has been very challenging this week as I have been pretty reactive.  I have experienced random flushing, itchiness, throat tightness and fluid retention.  It's all due to a dysfunctional autonomic nervous system as it comes in waves which tells us it's not an allergy to the meds, but it can get downright scary at times.  There have been two times this week where I almost reached the point where I thought we needed to go to the ER, but since that always causes more harm than good, I fight with everything I have not to get to that point.  Tonight was probably the scariest with my Azithromycin, but I slowed the IV WAY down and was able to make it through with a lot of assistance from other drugs and the Lord.  I have to say that God knew something was happening and it was comforting to be reminded that He is watching out for me.  I know that, but sometimes in the heat of the moment, it's good to be told that.  I got a random text from a friend who said she just felt the Lord lay me on her heart all evening and had been praying.  What a blessing!  We really needed it big time with this infusion, and it was such a comfort to know that God was on the job. :)

As a whole, my  (herx reaction to the meds) have really exploded this past week.  There have been times where I have been so nauseous that I have almost thrown up (I do everything I can to avoid it...have done that since I was little, lol), TIMES where the room won't stop spinning, TIMES where I feel like I am breathing through a straw (it's not asthma, so there is no remedy but time) caused by the bacteria being fought and affecting the amount of oxygen in my red blood cells (called "air hunger"), TIMES where my heart rate is high and my blood pressure is low, TIMES where the head pressure and headaches are so bad that sitting up is hard to do, TIMES where I am so exhausted that even going to the other room to get a drink of water looks like a big obstacle, TIMES where I have so much joint pain that walking is painful, TIMES where all I want to do is cry and give up because everything is just plain overwhelming and I am tired of feeling like I drank 20 cans of JOLT and that my body has decided to run a marathon without my permission, TIMES where I wonder if we are on the right track with treatment as there are so many different ways to treat this disease, and TIMES where I just feel frustrated and tired of this fight even though we are only on our third month of IV treatment. 

Well, that is an honest picture of our week.  It's during these TIMES that I have to purposely have had to remember the attributes of God and that no matter how things are or look, He is sovereign, in control, faithful, gracious, kind, loving and our provider.  I have been reading a lot in the Psalms especially Psalm 100-111.  There are so many great promises in those passages...I'll list some passages that have specifically spoke to my heart.

Psalm 103:1-5
"Praise the Lord, O my soul; all my inmost being, praise his holy name.  Praise the Lord, O my soul, and forget not all his benefits - who forgives all your sins and HEALS ALL your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's."

Psalm 105:4
"Look to the Lord and his strength; seek his face always"

Psalm 111:7-8
"The works of his hands are faithful and just; all his precepts are trustworthy.  They are steadfast for ever and ever done in faithfulness and uprightness."

We haven't had a very fun or celebratory week, but as Christians, sometimes, we have to celebrate even when circumstances do not point us in that direction.  God is OUR strength and OUR portion forever. He is our Emmanuel and it's in Him that we can place our trust.

I know this post is long, but I want to list out some prayer request....

• Please be praying that my reactions and treatment side effects would calm down.  My body seems to have a mind of it's own these days and I am miserable.  I really need me to be able to tolerate these drugs as long as possible in order for me to have the best chance of killing the Lyme bugs.  So, I have to persevere.  Please pray for God's protection and for a peace and comfort that only comes from Him.
• Please be praying that I will stop losing weight.  This issue is a battle as almost everything I would eat that would help me gain weight feeds the bad bacteria in your body that often grows when too much of the good bacteria is killed off by the antibiotics.  It is really challenging with my food allergies and sensitivities and we have yet to find a solution.  Meanwhile, I keep going down in clothing sizes and I'm running out of things that fit! 
• Please pray that God would continue to provide physically and financially.  My insurance company is starting to throw a fit about things.  We are hoping it's just because throughout the month of October, some wrong codes were used on my invoices, but at the same time, they seem to be analyzing everything with a microscope and where they were paying 50% consistently for September, they are now very inconsistent and hardly paying at all.  We are going to be going through the appeal process, but when I feel so sick, writing letters and providing documentation looks like an exhausting mountain climb.  Plus, we are not sure how long I will have to do IV treatment at this point our financial resources are dwindling at a fast rate. God is really going to have to come through in mighty ways and so we have yet another opportunity to trust that God will make the impossible possible.
• Please be praying for emotional strength and clarity in decisions that we have to make in regards to my treatment.
• Finally, please pray for my wonderful husband.  He has been amazing this week...so patient, kind and caring.  Always making sure I am okay and willing to sacrifice his own time for me and taking care of household duties.  However, he has a HUGE exam coming up on November 19th.  He will be taking the first big section of the CPA exam.  He has been studying when he can, but this week has kind of been less than accommodating when it comes to free time.  Please pray that God would multiply his study time the next two weeks. I am so proud of Him and know that he will do a great job.  It's just that life is hard right now, and it's not always easy to get the things done that need to be done. 

Well, that is all for now.  Boy was this post long. I am sorry about that!  My IV is done, and I need to get to bed.  Thank you so much for praying and supporting us.  We have been overwhelmed with the blessings that God has given us through people we know and do not know.  We are going to make it! God is going to bring us through, but we just might have the battle scars to prove it. :)  However, this is God's current path for us and we wouldn't want to be anywhere else.  Blessings to you my friends!

Celebrating baby steps!

Hello Everyone! Happy last week in October! I can't believe November is almost here!!! I will fully admit that I listened to Christmas music over the weekend.  However, it was only through my Ipod as Brian doesn't let me listen to it until Thanksgiving. :) I just can't stand to wait...I love Christmas and everything about it.

Again, I would like to start off with saying a big thank you to one of my childhood friends, Trisha, who came and stayed with us this past weekend and helped me to my appointment on Monday.  It was so wonderful to see her and to catch up.  We were blessed beyond measure by her generosity as she not only helped with things around the house, but also cooked Brian enough home-cooked meals until January.  What a precious gift.  Thank you girl for being so willing to be used by the Lord.  I enjoyed our time so much!

We have had some praises! Yay! From last week when I wrote to today, my liver enzymes have gone down considerably.  Praise the Lord!!  I haven't ever seen them go down so fast, so I know it was all of your prayers.  Thank you so much!  God is so good.  I have a little more to go before we reach normal, but they are drastically improved.  I am doing IV Vitamin C through the weekend and also gultathione pushes through my IV.  Both of those help me detox a ton.  In fact, it helped me detox so much that on Sunday, I actually was able to be up and about for a couple of hours helping Trisha cook a bit and I also wasn't bothered by the cooking smells which usually make me pretty sick. 

We are hoping this is the beginning of my chemical sensitivities improving.  We can see small baby steps of improvement and we are encouraged.  We have tiny set backs, and the four days I do antibiotic treatment each week are still really tough to get through.  However, I am noticing it isn't hitting me as hard as it was a couple of weeks ago.  It seems that my body is adjusting and also that the bugs are getting killed! 

I have tried quite a few new foods in the last week or so.  We had some unsuccessful experiences and some successful ones.  The foods that I have been able to add are yogurt, olives, onions, eggs and asparagus.  Also, I have been allowed to add back in some milk products, so I can now eat cottage cheese and mozzarella cheese sparingly. I can't eat those too much because it feeds the bad bacteria that the antibiotics are causing to grow.  That's another reason why I haven't gotten back to drinking milk because there is a lot of sugar in it, but it's fun to add these other things in even if I don't get to eat them very much.  Lentils are actually tolerable with onions in them; however, notice I say tolerable and not delicious. ;) Not sure if those will ever be delicious. :)

So, all in all it has been a good week.  Please keep praying for my liver enzymes to go back to normal and also the Candida issue.  Also, if you could be praying for peace and our endurance, we would appreciate it.  The meds are working, we can tell, but it's a long process.  We are about 2 months in on a long journey, and some days it gets pretty emotional  and tough.  So, we would appreciate it the prayers.  Have a great weekend! I'll post again next week! :)

The update is finally here!

Hello Folks!  I am sorry this update is a little delayed.  Things got a little crazy around our house with my health, so unfortunately the blog took the back burner.  I am going to try to update every week, but as treatment gets more intense and I feel worse, it might be every two weeks.  Hopefully, we will turn the corner soon, but right now it's a battle.

Let's see if I can remember everything that went on...

First, I want to say a big thank you to my friend, Jill, who came to help us out from Saturday until Wednesday.  It was such a blessing to have her here.  She is so kind and has such a heart for the Lord.  Jill ~ Thank you for sacrificing your time.  We appreciate it so much! You are such a joy! May God bless you abundantly girl. Love you!

I am up to 1 gram of Zithromycin and 500mg of Flagyl 3 times a day.  That is a lot of antibiotics and I would have to say my body is not handling it so well.  By last Thursday, I was REALLY sick.  I took effort to talk, walk and communicate with others.  That sounds crazy but doing any kind of movement was a huge chore.  I am always one to answer messages, texts, e-mails and calls pretty quickly, but I am afraid that did not happen a lot.  Between this and trying (keyword is trying) to keep up with my grad classes, it was a fight.  I did get everything completed by the deadlines, but I have a TON to complete by the end of the semester which for one of my classes is Nov. 21st.  Crazy huh!!  I need to push through, but some of these days all I want to do is sleep or die (sorry, the second is my dramatic side coming out, but sometimes feels that way). I pretty much run IVs all day and by Thursday it literally feels like I am just putting poison in  my veins. I know I am not, but with the side effects and the ugly symptoms that arrive, it sure feels like it!  Thankfully, my doc said it seemed like I needed a break over the weekend, so instead of doing Vitamin C IVs for Friday, Saturday and Sunday, I did nothing.  This was a big mistake, but we didn't know it at the time. 

My break over the weekend, caused my body to stop detoxing.  Vitamin C is a great immune booster, but when you take in high doses IV form, it also helps you to get rid of the toxins that the Lyme bacteria produces when it's killed.  At the time, we didn't think it would be that big of a deal to miss it.  However, we learned our lesson.  My symptoms went through the roof and the most annoying was that I started reacting to EVERYTHING!  Never a fun time, believe you me.  So, on Monday, we talked to the doctor and we will not be doing that again.  Since, I was already super set off allergy-wise.  Doing my IVs at the office on Monday was a chore.  It took a long time to get them done and I reacted to some of them, specifically the Vitamin C IV.  Crazy huh...well my body does this funky thing where if I gap certain things, when I start them up again, I react.  However, I made it through the day and things have started to lessen as we have gone on through the week.

We have had to really up my dose on probiotics and praise the Lord, I am tolerating it. I was starting to see signs of Candida (that is what you get when too much good bacteria is killed), so we had to make some changes to my diet (which is always such an insane challenge because I am so limited).  It seems to be working, but I am SOOOO hungry! :P  So, that is one problem we have encountered.  It's not too big of a deal yet, but we have to watch it carefully.  Please be praying that this will be resolved quickly so that I can add some of the foods I can eat back into my diet.  I have lost about 27 pounds since the end of July, so I really can't afford to lose any more weight. Nothing fits anymore (which is nice except I don't have very much to wear) and I keep getting smaller and smaller.  They are not concerned at this point, but 7 more pounds lost would put me at a not so healthy weight.

The second big piece of not-so-good news is that my liver enzymes are high again and keep climbing.  One month ago, they were a bit elevated, but nothing we needed to watch carefully.  However, this month's report showed them higher. So, I just heard from my doctor and we are going to try to up my detox protocol and will have to take weekly blood draws until we see improvement.  Antibiotics are really hard on your liver, especially when you take them long term.  Add that on top of my body not being able to get rid of the toxins without assistance and it creates a problem.  We would REALLY appreciate your prayers for this. It's so important that my enzymes go down so that we can progress with my treatment protocol.  I'll keep you posted on what they are doing. :)

Finally, I still need to get on a bunch of supplements and medication that my doctor wants me to take. We have to do it so slowly and can only do it when I am not dealing with allergic reactions already (if I react, we have to make sure we know what I am reacting to).  As you can probably guess, we haven't had too many of those "good days" in the last couple of weeks.  Please be praying that my body will calm down so that I can take the supplements.  Please also pray that I tolerate them!  It's so hard for me to take pills for some reason.  I do better with IV stuff, but herbs and supplements always give me a ton of problems. 

Well, I think that is all that's happened.  Tomorrow, we will go to my doctor's office and Brian gets to go with me! Yay! He went last week too and it's so nice to have him along. I know it's hard on him not being able to be with my at my appointments.  Starting next week, I will only be able to go to my doctor's on Mondays to get infusions and then pick up my supplies for the rest of the week.  It's going to be challenging to not be able to go twice a week especially if I have problems.  However, I am way too sick to drive myself, so we will just have to deal with it.

Thank you all for your prayers! This truly is a fight to the finish and we are definitely feeling the battle big time.  However, we know that with God there will be victory.  What that will look like, we are not sure, but we trust in His sovereign plan.  Blessings to all of you!!

Our Sustainer

As I start this post, I am not so sure what to say.  It has been kind of an emotional and physical roller coaster this week.  To be quite honest, treatment has been hard, and it has been a struggle to keep my eyes focused on Jesus and to remain hopeful.  It's taking everything I can muster to hold tight to my Savior.  However, I think it's important to let my readers of this blog see both sides of the journey.  The happy, "correct focus", hopeful and joyful side, but also the struggle as your body fights the disease and the emotional battle of the unknown and the stresses that this disease brings.  I know I have explained before how this disease hits you on so many levels.  Not only do most people struggle physically, but since the bacteria has invaded your brain, it messes with you neurologically which leads to a roller coaster of emotions that you have to battle.

So, it's been a fight this week.  It's been hard to fight the doubts and discouragement. I watch so many of my friends who have seen multiple Lyme doctors, been through all kinds of natural and conventional treatments only to be suffering day in and day out with no end in sight.  It breaks my heart that there just hasn't been enough research done on this disease to help bring relief to this hurting community. I am sure things will be different in 20 to 50 years, but until then, it's hard to watch the difficult journeys unfold.  I wish all of them could be well.  I wish that they could play with their children, be a part of church ministries and perform normal day to day activities, but many of them have not gotten there yet.  They are working hard and doing everything they can to get well, but are still falling short.  Please pray for those that are suffering from this disease.  We need to go to battle spiritually and intercede for those that are hurting.

Wednesday was the most difficult physically.  I am now on Zithromycin along with 3 doses of Flagyl each day Monday-Thursday.  It hit me hard that day and I could barely move off of the couch after my last evening dose.  It was a chore to even take a breath.  I think I gave both Brian and my Mom quite a scare.  To be honest, it scared me too. I have never been that sick in my life.  I just wanted to give up and just surrender that white flag because it was just getting too hard.  However, that is not who I am and not who Jesus has called me to be. I do NOT give up. I will not surrender or let this disease win.  God will have the victory! 

So, on Thursday we started the drug round again, and by God's grace it was better.  It's still been pretty rough over the weekend. I have had a lot of fatigue, pain, dizziness and a new not so fun symptom that has popped up which is making it difficult to eat food.  It seems like everything I try to swallow induces a gag reflex.  It's not because my food is bad or that I am tired of it (although, it has been a long time where I have had a list of 2 to 12 foods), but it happens with everything that I eat.  Thankfully, I have been able to push through, but it has presented a new challenge.  I am also getting horrible stomach pains from the drugs.  I know it's IV, and it does pass the digestive tract; however, it still can affect your stomach.  So, we are working on trying to find some relief by trying some new things recommended by my doctor.  However, new drugs, supplements and remedies are always tough because we always have to risk setting my system off allergy-wise.  Tomorrow (Sunday) will be a big day as I begin to try some of the things.  We are praying for no reactions and for relief!

On Friday, I kind of hit a wall.  I was discouraged and battling a lot of the symptoms.  I was reading in the bible and I came across Psalm 54:4 which said "Surely God is my help; the Lord is the one who sustains me." I felt the Lord really communicate that He is my sustainer.  Later that evening, I listened to Louie Giglio's podcast from Passion City Church titled "Unstoppable".  Click on the title and it will link you to the podcast.  I would highly suggest listening to it!  Within his message, he talked about Isaiah 46 and how God is our sustainer no matter what we go through and how difficult it gets His plans for us are "unstoppable".  It was clear, that this was the message God was trying to speak to me.  Isaiah 46:3-4 says (emphasis mine) "Listen to me, O house of Jacob, all you who remain of the house of Israel, you whom I have upheld since you were conceived, and have carried since your birth.  Even to your old age and gray hairs I am He, I am He who will SUSTAIN you.  I have made you and I will CARRY you;  I will SUSTAIN you and I will RESCUE you." What an amazing promise. It's so easy to get lost amongst the physical and emotional pain, but we serve a God who is soveriegn, who can do miracles and who can SUSTAIN us through any trial or circumstance.

The song below has ministered to my heart a lot this week.  It's "I Will Rise" by Chris Tomlin. Remember, you will need to push pause on my music player at the bottom of this page so it doesn't interfere. 



So, that is a snapshot of the week.  It was tough, but it has been good to remember that God is our sustainer.  We do have a couple of prayer requests as we go forward this week.  We are set to increase my level of Zithromycin which will be hard.  I think once we get there though, this will be the last antibiotic increase that we will have to do for awhile. We'll hold steady at the doses until we start seeing some improvement or until we see a need to switch.

My mom will be leaving on Tuesday to go back to Omaha.  We have been so thankful for her help. It has been such a blessing to have her here, and it will definitely be an adjustment when she leaves.  Thank you Mom for sacrificing so much to help us! We know it took a lot of sacrifice to come down here and give up your life for six weeks, but we appreciate it more than words can say.  So, for the first time, I will be running my daily IVs by myself on Tuesday and Wednesday.  Please pray for peace, safety and strength.  We do have help flying in on Saturday, but we will be on our own for the first time since the end of August.  Thankfully, we are never truly alone as we know that God will be with us. :)

I don't have an insurance update yet. I did call them to see how things were going with the claims that I submitted and they gave me a reimbursement figure that was definitely not 50%.  We are thankful and blessed for anything we get, but we are praying hard that they will continue to cover half of my treatment.  God can do it, and we are trusting and believing him to provide.

That's all for today! Thank you for praying.  Your prayers are working and God is sustaining us through this journey.  Have a wonderful week my dear friends! Know that we are praying for you too!

Crazy thing called Lyme

Happy October everyone! Wow, I can't believe fall is here...it's strange because we have been around 100 degrees in Southern Arizona.  So, it definitely doesn't feel like fall, but the calendar says it is, so I guess I have to believe it. :)  However, I would like to stop using our air conditioning soon as it is expensive, so prayers would be appreciated! :)

Let's see...here is the update this week. I wish I could say it was pretty uneventful, but I was wrong..so here we go.

First, we had an AMAZING AMAZING AMAZING (can you catch my excitement??!!!!) answered to prayer this past week.  Starting the beginning of September, I began sending in our medical claims to our insurance company on the off-chance that they would pay.  I had LOW expectations, but thought I would give it a try.  Well, the first batch I mailed off only contained nutritional IVs (like Vitamin C and Myer's cocktails etc.). I really didn't expect them to pay anything because most of the time insurance companies do NOT pay for things like these. However, it was worth a shot, so I mailed them in anyways.

Well, this past week, I logged into our insurance carrier's website just out of curiosity and saw that my insurance company paid 50% of the first batch. I about fell off of the couch! That is so exciting and amazing for us.  Anything that we can get back will help us be able to afford more of my treatment.  Now, we did send in another huge batch mid-September and haven't heard anything yet. This contained both the nutritional IVs and the really expensive antibiotic IVs.  So, it will be interesting to see if this will flag them and they will take a second look at what I am submitting or if they will continue to pay 50%.  If you could please, please, please be praying that they will continue to pay half.  I can't tell you how much it would mean to our finances especially since I took a leave of absence from work and we no longer have that income coming in. 

Now onto this past week of treatment...Monday through Wednesday, I handled the IV Rocephin morning and evening totally fine.  We added Flagyl at the beginning of the week once a day, and I handled those IVs fine also.  By Wednesday, we were set to step up on Flagyl to twice a day.  Is this confusing you yet?  It is quite the challenge to keep everything straight between all of my oral medication, supplements and IVs.  I think a master list may be in order in the future as I tend to not be the most detailed person on the planet. :)

So, Wednesday night, I had everything with me to do an evening dose of IV Rocephin and Flagyl.  However, my body had different plans. :P I started the IV Rocephin and boy did I get a reaction I was not expecting.  Apparently, between the morning dose and my evening dose, my body decided it didn't want the drug anymore. I had a horrible reaction....throat swelling, asthma,  and my mouth, throat and tongue went completely numb etc.  It was quite scary.  We toughed it out at home as going to the hospital never comes without its consequences.  Don't worry though...the minute we would have seen that it was irreversible at home, we would have gone. All in all, it was a crazy reaction.  It was especially odd that I was able to take it for two weeks with no problems and then all of sudden out of nowhere I reacted.  I have heard of this happening to my friends.   We are not quite sure if I developed a true allergic reaction to it or if the Lyme Disease caused me to become allergic to it (as it does such crazy things with your immune system), but whatever the case is, I will not be having that antibiotic for quite some time. 

I have stepped up on Flagyl to twice a day and next week we are set to do three times a day and add Zithromycin.  So prayers would be appreciated that I would tolerate the increased doses and new drugs.  I really don't want to experience anything like I did Wednesday night for quite some time. :)

Well, that is our update.  These are getting shorter and shorter as you can tell.  I am pretty tired these days from traveling to Phoenix and my treatment.  Plus I pretty much feel like junk 90% of the time.  Brian is busier than ever studying for the CPA exam.  So, our words our fewer; however, I promise to keep the weekly updates coming! :)  Hope you have a great first week in October!  Blessings! 

Week 4 ~ Tired :)

Well, this week's update will be short. I know sometimes I say that and then I go on and on, but it's Sunday evening at 9pm and I just got done with a long treatment week and a big graduate project (that I didn't start until today and it was do this evening...yay for procrastination!!!). :) Oh, and did I mention I have to get up at 5:45am to start another week of daily infusions in Phoenix? Sounds like fun huh! I bet you want to trade places with me. :)

Let's see if I can remember what happened this past week...The only thing that changed was that we started doing morning and evening infusions of the antibiotic Rocephin.  I handled it pretty well with no allergic reactions.  Praise the Lord!  Towards the end of the week, I could tell it was working. I was exhausted, achy and had an eternal headache with head pressure.  Oh, and the lovely Lyme Disease nausea was back, but manageable. So, all in all, I was thankful.  We have really learned to balance my medication during my infusions, so we can hold off any allergic reactions.  If I do have them, the 30min. wait time works and when I start them again, I tolerate them.  So, that was a summary of our week.  See..it's short and sweet. :)

Tomorrow, we will be adding another antibiotic to the mix.  This one is Flagyl. I am SOOOO not looking forward to this one.  I took this drug when I was on an oral antibiotic treatment protocol with my previous doctor on the East Coast.  We nicknamed it the "Evil Drug" because whenever I took it, I pretty much wanted to die.  That may sound like an exaggeration, but it really attacks the Lyme bacteria and causes a lot of unpleasant symptoms to flare.  My doctor will start me out slow, but wants me to build up to a dose of this drug 3 times a day for 4 days a week.  I have heard that IV Flagyls tends to be less intense then oral Flagyl, so I am really praying that this is the case. 

Our prayer requests for the week are....

• Please pray that I will tolerate the addition of Flagyl and that the side effects would be minimal.
• We have submitted our first two rounds of IV antibiotics to my insurance company.  Please pray that they will pay a portion of the bill.  It's about $245 a day, and I do it for 4 days. It would be incredible if they would cover even 50%.  However, this is where a lot of insurance companies refuse to pay because the long-term antibiotic treatment is so expensive.  We are praying that God will work a miracle.  If they refuse to pay, we will have to order our drugs from a company in Florida. I know a lot of friends have used them, but with my extreme allergies and the fact that I am tolerating the IV solutions from my doctor's office, we would prefer to get them from her. 
• Please pray for stamina.  We are pretty tired from traveling every day.  It's also hard to keep going when we don't see huge improvements yet (we have seen small gains and praise God for them, but have yet to see huge changes).  I know we just began this journey, so I am really having to give all of this over to the Lord. I know that He will get me well in His timing, and although I would love that to happen extremely fast, I also know that He knows best. :)
• Please keep praying for Brian and also my Mom.  Both of them are sacrificing so much to help me on this journey.  My Mom came down for about 2 1/2 weeks and then is back down here for 3 weeks.  My Dad will join her for a visit this coming weekend and then both of them will be back for a long stay around the holidays to help cover appointments.  We appreciate their willingness to help us.  Without them, I would be unable to make it to Phoenix and also Brian would be going crazy trying to take care of everything around the house.  It has been a blessing to have the help we so desperately need.
• Please keep Brian in your prayers.  Work is getting busier and he is also trying to study for the CPA exam.  He is pretty tired from trying to balance everything including things around the house.  I am so proud of him! Please pray that God would give him an extra measure of time and strength this week.

Well, that's it for now! See, this was a shorter post....I think. :) Have a wonderful and blessed week! Happy Fall Everyone!

Week 3 ~ Rough

It's taken me awhile to put my thoughts together for this post.  We have experienced a gamete of emotions this week, and sometimes it's hard to articulate all of them.  Towards the end of last week, we ended celebrating the small steps of progress I had made in expanding my foods and even being able to tolerate going into a store.  However, we knew there was a high probability that this week would take a turn and boy did it.  We suspected that when we began my antibiotic treatment, that it would be "rough" and unfortunately we were right. I'll try to give you a run down of the events of the week.

First, I would like to say a special thank you to my precious friend Mary who left her family to come down and help us for a week.  We were so blessed by her visit and are forever grateful for her help.  It was such a wonderful time of encouragement and Christian fellowship.  Mary ~ Thanks for allowing Jesus to work through you to minister to us!  You are an amazing woman of God, and the love of Jesus shines through you in so many ways.  May God bless you as much as He blessed us with your visit.

Monday was the day we added the antibiotic Rocephin to the list of IV infusions I am getting.  This was the first IV antibiotic that I have had.  Let's just say it was a LONG day.  In fact, every day that I received an infusion this past week (Monday-Thursday) was a LONG day.  We arrived at the office and didn't end up leaving until around 3pm each day.  Monday was a tough day to push through as my autonomic nervous system was...let's see...how do I put it...just "freaking out".  I tried to eat protein in the morning (like I usually do) and I reacted. I tried to infuse my supplemental IVs and I reacted to each one.  I think it took me about 2 1/2 hours to infuse my IV Vitamin C. I had to do it very slow so that my body wouldn't reject it.  Tuesday was a little better, but Wednesday and Thursday were worse.  By Thursday, I reacted pretty bad to the Vitamin IV.  However, my doctor figured out that if I took a medication that calms down my autonomic nervous system, the reactions were less.  So, I upped my dose each day and was able to make it through everything, but we had to do it very slow and I was really drugged. :P I am telling you that the other people in the infusion room got a pretty good laugh at one point when I tried to get up and walk around.  Let's just say I was not on stable footing, and I can honestly say I don't remember a lot of details of those days. :)  Besides the reactions, I did have quite a few unpleasant, but bearable Lyme symptoms pop up (achyness, dizziness, head pressure, headaches etc.).  So, we know the drugs are hitting the bacteria. 

Now, some of you might be wondering what kind of reaction I get.  Well, it depends on what I am infusing; however, for the most part it affects my throat.  My throat feels like someone has their hands around my neck and is constantly squeezing.  Sometimes, I get itchy and a blotchy rash, but the throat constriction is the worst to have to deal with especially because that is one of my ultimate fears.  So, starting IVs, getting the reaction, taking medication and having to try it again, really does a number on the nerves.  Brian compares it to his fears about stinging insects (shhh...don't tell him I told you about them, lol).  He says it's like walking into a room full of bees, getting stung and having to do it all over again.  I think that is a pretty accurate comparison.  However, as I look back over the week, I can see God's hand print.  He kept me safe through all of the reactions.  Nothing escalated to where it effected my breathing, and we are so thankful for that.  I have amazing nurses and awesome Christian women in the infusion room who are so encouraging.  I am truly blessed.

This weekend, we have been doing some IV Vitamin C infusions at home.  Everything has been going pretty well.  I have been reacting to some of my foods, but that is a normal occurrence...you gain some and you lose some.  I was a bit nervous to do the IVs as it was my first time without my nurses watching, but it all went smoothly.  One of my nurses messaged me on Facebook just to check up on me and encourage me.  Again, I am so blessed to be at this clinic. Once again, I have had some Lyme symptoms flare up, especially tonight.  A ton of dizziness...the kind where you lay still and the room just spins and spins..again, we know the treatment is working.

On Monday, we are set to increase my dosage of antibiotics.  We are going to do a dose at the clinic and then a dose at home.  We really don't know what to expect.  We are praying and hoping my reactions don't get worse, but at this point this is all unknown territory.  We know that as the bacteria is fought, it will make the part of my brain that houses my autonomic nervous system go crazy as we are already experiencing the craziness. :P It is our hope though, that we will reach a tipping point, and things will start getting better instead of getting worse, but when that will happen, we are not sure.  So, I guess you could say we are in survival mode pushing through to get to the other side which will hopefully finally bring me some relief.

Now, you can probably see why we have run the gamete of emotions.  This whole journey is filled with so many unknowns as we never know what my body will do.  Some days I can eat food and tolerate IVs and other days I can't.  The medication my doctor has me on is helping, but we keep having to increase the dose and obviously that too will have a stopping point.  So, personally, I am having to trust God with everything in me knowing that He is my protector.   Instead of crying my eyes out (which is super easy to do these days) because of fear, discouragement and hopelessness, I am trying to focus on Christ's joy, peace and hope.  It is really hard to do, but I know it is necessary.  This is a time where I have to lay everything at the foot of the cross.  I know that state of surrender is a place we should always be; however, I think the gap becomes more apparent when you walk through a trial like this. 

I will move to our current prayer requests:

• Please be praying that my autonomic nervous system would calm down, and that I would be reaction free during my infusions.  Please pray that God would be my protector and that my throat would stay open and that my breathing will not be effected.
• Please pray that I will be able to add to my food rotation diet, and that I will not lose any more foods. With the foods I have lost this past week, it is getting really challenging to stick to a rotation diet and to also find foods that don't set me off.  Thankfully, my water is still working for me, but if you could pray that we could successfully add to my food list, we would appreciate it.
• Please be pray for comfort and peace for both Brian and I.  We know that we have just begun this fight, so it's easy to jump to the worst conclusions.  However, God has the ability to turn this around, and we are praying that my body will upright itself and start working correctly.  Please pray that we would place our hope in the Lord and that our focus would not be affected by outward circumstances.
• Please be praying for my husband. I know it's hard for him to not be able to be with me during my infusions in Phoenix and as I experience all of these crazy reactions.  He is also working so hard at his job, taking care of all the household responsibilities (when we don't have help down here) and studying for the CPA exam.  He is such an amazing man of God and an incredible husband; however, I know the stress and strain of my illness is hard to bear week after week.  Please pray that God would bless him with abundant strength, endurance, joy and an extra measure of time. 
• Please be praying for financial provisions.  We are starting to receive bills and insurance is not paying as much as we need them to.  We are still waiting on a set of claims that will give us an idea of what to expect in the future as far as treatment costs.  However, it is our guess that they will not pay and so we will still be left with footing the bill of about $1600 per week. God is our provider though and we know He will come through for us.

Thank you for all of your prayers.  It is such a comfort to know that others are praying for us during this time.  I'll update next weekend.  Blessings!

Week 2: God is Faithful

It's 10:38pm, and I am just plain exhausted.  That is after a 5 1/2 nap today.  Yep, I just typed that.  You are probably wondering if I will be able to sleep tonight, but I am so tired.  I think the treatments are really starting to help fight the infection in my body.  I sleep at night and during the day, and in the evening, it takes a major effort to do anything.  It really has hit me in the last two day or three days which makes sense as I have now made it up to my therapeutic dose of IV Vitamin C.  50grams was her goal for me, and I made it! :)  That is a big accomplishment as two months ago, we weren't even sure if I would be able to tolerate normal IV saline.  All credit goes to God.  He is allowing me to make it through the treatments with minimal reactions and only unpleasant side effects.  The flushing during my treatments is my most annoying symptom.  The fatigue and achyness I can put up with, but I would LOVE it if the flushing reaction would go away permanently...I promise I would NOT miss those episodes. :) 

I will fill you in on the "baby steps of improvement" that we have experienced over the last week.  It's exciting for us, but at this point, we have been on this journey for so long where my health goes up and down, so I have to admit we are a bit guarded.  We have noticed that the IV Vitamin C is really helping to reduce the toxin load in my body.  It is known for being a great detoxer.  So, not only is it helping to boost my immune system and to help fight the infection, it's getting the toxins out of my body so that I am not as allergically reactive.  We have seen this in two areas. One, I have been able to add a couple of new foods to my rotation diet.  I can now eat pear sauce, cooked cauliflower and I can tolerate turkey and pork on a regular basis instead of having to rotate them every eight days (I can now rotate them every 4 days).

We have also noticed that I am tolerating chemicals a bit better.  I was actually able to go into 2 stores with my Mom that definitely smelled like perfume, cologne or new clothes.  I had a  minor reaction in one, but was able to push through, and I lasted a combined total of 45min.  That is HUUUGGGEEEE!  One month ago, I would not have lasted 5 minutes in a clothing store, and I would have paid for it for a week after. So, I call these baby steps because it's progress, but like I said, we are very used to things going up and down, so I guess we are cautiously optimistic. :)  We know it's working (that's exciting), but we know that our journey just began and it's probably going to get a lot tougher before it gets a ton better. 

Brian and I have talked a lot about what attitude we should have especially as Christians as we go through this journey.  We wonder if our guarded attitude is appropriate or if it's a measure of unbelief.  Not unbelief in God as our faith is extremely solid and our relationship with the Lord is everything to us; however, when it comes to my complete healing, I think we are weary from the past 5 years, so we take everything in (the good and bad) through a filter.  We try, with everything we have, to hope in the Lord and not the treatment.  It's been very difficult to look at the dreams we had for our lives, especially in the area of having children and being involved in ministry, and wonder if and when they will ever come true.  It's a painful and grueling to try to process through it all; however, in the end we always come to the same conclusion:  the God we serve is all powerful and we need to take comfort knowing that His plan is perfect.  We have had to open-handedly relinquish all of our desires (the one for children has been the hardest) knowing that we might be blessed by having them come back to us, but if they don't, praying that God will mold our desires into what He wants them to be.

So, where does that leave us?  Well, I think we are still working through that.  We have learned our focus needs to be on Jesus.  We have learned what it looks like to completely trust the Lord for our future physically, financially, emotionally and even mentally.  Some days are easier than others, but God is always faithful.  We have learned to stand on the promises in scripture and to run desperately before Him in total surrender.  Now, I won't say we do all of this every minute of the day just because we have learned it. :)  Sometimes there are days where we both get frustrated, hurt, angry and sad about our current journey, but in the end our obedience takes over and we run the right way praying that our feelings will follow.  We do know that the only way to have peace, joy and comfort in the midst of suffering is through our Lord and Savior Jesus Christ.  So, we give it our all, often coming up short, but knowing that Jesus can carry us the rest of the way.

Starting on Monday, I will be adding my first IV antibiotic to my treatment protocol.  This is a big unknown for us as the last time I was on oral antibiotics I was SO sick.  IV antibiotics really hit the bacteria as they can cross the blood brain barrier very quickly and are much more effective.  So, they have the potential to be even more potent.  However, I have talked to a lot patients at the clinic who say that their transition wasn't as difficult because of all the supplemental therapy they were doing at the same time.  That is our prayer!  I did get trained on how to do my own IVs this last week (SCARY!! LOL). I did pretty good and only messed up once.  Thankfully, it wasn't a life-altering mistake. :P  The schedule for right now is to have me go up this coming week Monday-Thursday as they want to make sure I tolerate the new drug before sending me home with it to administer it on my own.  Then, we are hoping that we can back my appointments off to just twice a week and do the rest of the treatment at home.  Those Phoenix trips are getting a little long as we have to do them every day!  However, every time it starts to frustrate me, I remember to be grateful that my amazing doctor and clinic is only 2 hours away instead of 3 days.

The following are our prayer requests:

• Please pray for Monday and my first infusion of the antibiotic.  This is always a nerve-wracking experience as we are never quite sure how my body will react.  Please pray that there are no allergic reactions and also that the side effects or "herx reactions" (the symptoms that you get when the Lyme bacteria is being killed) are minimal.  What a gift that would be! 
• Please continue to pray for God's financial provision.  When we start the antibiotic treatment, our weekly costs sky-rocket.  I will submit the claims to my insurance and we are praying that God would intervene and have them pay.  Even if they covered a portion, it would be such a blessing.  Usually, insurances do not pay for long-term IV antibiotic treatment for Lyme Disease patients, but again, we serve an all powerful God and we are praying with all of our hearts that He would work.  To give you an idea, one antibiotic costs about $200 per day and I eventually will be on 2 or 3.  We have estimated my treatment costing about $1650 per week for 5 to 7 months.  Yikes is right!  So, any help the Lord provides would be a blessing.
• We still have 3 dates that are not covered as far as needing help to get me to my Monday appointments in Phoenix.  They are October 10th, November 15th and December 6th.  If you could be specifically praying that God would provide someone to help drive me on these dates we would appreciate it.

Finally, I would like to write a special section to request prayer for a priceless friend of mind.  I met her about 7 months ago and she has become like a sister to me.  She has Lyme Disease, Multiple Chemical Sensitivities, Dysautonomia and if you compare my list of issues, they are much like hers except for her they are magnified 100 fold.  She has been really struggling physically for the last 3 to 4 weeks and it breaks my heart to see her suffer so much.  She is such a wonderful Christian and she has a heart of gold.  She is so sick, but is always looking for ways to help others.  For privacy reasons, I won't list her name.  Her symptoms have gotten to the point where they are extremely scary and dangerous.  Please pray for this priceless girl.  She has so much to give, and I know that God has amazing plans for her.  However, she is having to fight every day, and I know that she is exhausted.  Please pray that her body would upright itself and the reactions would calm down.  Please pray for relief from her long and difficult list of symptoms. Please pray that her doctor would have wisdom.  Pray that God would provide for her financially and physically.  Like all of us, treatment is horrendously expensive.  Finally, please pray for comfort and peace, and that she would feel the presence of the Lord as she travels down such a difficult and scary road.  Love you girl...you know who you are!!!

Thanks for praying everyone!  May God bless each one of you abundantly! May you meet Jesus in a new way this week.  He is our true life-sustainer! Talk to ya soon! :)

First week down!

One week down, 27 weeks to go.  LOL Maybe, I shouldn't look at it this way until we get a little bit closer to the end.  I am thankful for this week.  It has definitely stretched my faith, and I am learning to press forward even when it gets tough.  God has been so faithful, and it has been awesome for us to watch Him work!  I will give you a run down of our week.

On Monday, bright and early, my Mom and I left Tucson at 6:30am to get to my physician's office by 9:00.  We were blessed to get to be a part of the Phoenix rush hour traffic. :) When we arrived, introductions were made between my Mom, the office staff, the doctor and the two infusion nurses (who are AMAZING by the way).  It's like one big family there.  Everyone knows you and treats you like a friend or a relative.  It's such an encouraging place. 

They accessed my port which includes putting a needle into my port and sealing it up so that the outside air cannot get through the opening.  As I mentioned previously, it's imperative to keep this sterile and clean so that no bacteria can enter through the tubing that goes straight to your heart.  We started my supplemental therapy which includes IV vitamins and minerals (called a Meyer's Cocktail), a push of Glutathione (that means it enters your port by attaching a syringe full of the drug/medication/supplement to your tubing and slowly "pushing" the med into your system...this is instead of getting the medication from an IV bag or glass jar), and we did IV Vitamin C. 

Thankfully, I didn't have any allergic reactions.  My doctor came in and talked to us during the week about the symptoms I was experiencing (rashes, flushing, itching, chest tightness/pressure etc.) when I was doing my infusions, and she said that she feels strongly that they are autonomic nervous system reactions and not true allergies.  We tried adjusting an oral medication and it did help me to improve.  So, I get to spend a lot of my time during the infusions ignoring crazy symptoms. :)  God is definitely helping me to learn what it means to trust and at the same time, it's kind of a relief to just "let go" and let Him take the reigns.  Up until this point, Brian and I had to be so careful and cautious about everything I did or came in contact with because we never had a physician who truly understood both sides of my conditions.  I will also admit that sometimes I tried to control too much.  So, God is helping me to change in this area.  Yay for spiritual growth!!  It's also such a breath of fresh air to be in the hands of my doctor who "gets it"!

By the end of the week, I was getting 37,000mg of IV Vitamin C.  Wednesday's and Thursday's infusions were the ones where I started experiencing the "herx" reaction from the bacteria starting to die off.  I had dizziness, chest pain/pressure, air hunger, nausea, head pressure and bone/joint pain.  This isn't anything compared to what will happen when I am on antibiotics, but the symptoms were still there.  To me, it's a good sign because I can tell it's working.  This next week, I will do 50,000mg each day as that is the dose my doctor wants me to be at.  She is doing everything slowly, which is what my body seems to want.  I am tolerating the treatments, so it's working!

I want to tell you another amazing part of this experience as I spend about 5 to 6 hours a day at my physician's office getting infusions.  It has been fun to meet some of her patients and believe it or not, a lot of them are Christians.  We have been able to talk about God, faith and ministry.  It's also exciting to hear about their journey and where they came from, how sick they were and how well they are doing now.  It has been such an encouraging time.  I thank the Lord again and again for bringing me to this clinic and for directing us down this path.  I would have never thought in a million years that I would have been able to tolerate any type of treatment or that I would have found a place that makes you feel like a part of their family the minute you step in the door.  It is such a blessing!

Allergy-wise, I can tell the treatment is stirring up quite a bit in my system as I have started reacting to a lot more things (water and food), but it seems like when one door closes, God has opened a window providing a substitute water to drink or food alternatives.  It has enabled me to press on through my treatment.  We are all hoping that we will get to a point where a switch will flip and my sensitivities will start decreasing instead of increasing.  What a day that will be! I believe God can do it!!! :)

Well, that is all for now.  Next week, they will start training me on how to do my own IVs so we can start doing more infusions at home.  Then, I will start antibiotics the week of Sept. 13th.  Wow, it's coming up fast! I do get a 4 day break from treatment because of the holiday.  I am excited to spend some time with my husband.  He has been working a lot this week because he is assigned to a big audit.  I miss him and it will be good to have him home for a bit.  So, our current prayer requests are much of the same that I have been writing about during the month of August.  If you could add to the list a prayer for my allergic reactions.  If you could please pray that they would start decreasing and that we could get on a larger food rotation diet and that I would continue to have a water that I can drink.  Water seems to come and go, but God is always faithful to provide for all my needs in His timing.  Thank you for your prayers! I will update towards the end of next week! Blessings to all of you and may the Lord reign in each of your lives!! :) Have a wonderful holiday weekend!

Port Day :)

Hello folks! Well, I am writing to you today in awe of what God did yesterday, humbled by the prayer support we received and praising God for his protection.  I get choked up even writing this post.  I don't think I have ever in my life experienced God in this way before.  We serve an amazing and miraculous God and we watched his power be displayed right before our eyes.  I will give you a recount of the day (as best as I can remember since they gave me some lovely drugs half-way through, lol). 

Brian and I left our house at 6:25am to head for Phoenix.  I actually was pretty drugged because I dosed two of my meds pretty close together in order to take them before the 5am cut-off for the surgical procedure.  In a way though, that was a blessing. I was pretty tired and relaxed on our trip up. :) Brian appreciated that, lol.  Who knows, maybe he rigged it that way, lol. J/K As we were driving up to Phoenix listening to praise and worship music, we looked out the window and saw this rainbow.  It was such a confirmation of God's promises and protection.

Once in Phoenix, we stopped off at my doctor's office to pick up some of their sheets and bedding.  I don't react to the detergent they use, so they were letting us borrow their stuff. 

At 9:30am we arrived at the hospital and checked into the outpatient radiology center.  By this time, I will admit that I was pretty nervous; however, God was with us in every step we took.  Each person we came in contact with did not have any perfume or cologne on.  Yay!! Once I was registered, Brian and I were taken to a "holding room" where they prep you for your procedure.  There, we met the most amazing nurse.  I have never in my life experienced a health professional who was so kind and compassionate and so well-versed with my allergies and sensitivities.  My doctor had called ahead of time to talk to the nursing staff and also the physician assistant who was going to be doing the procedure.  So, they knew I was coming and were prepared for my list of allergies!  That was a blessing.  What was different about this experience is they didn't ignore or minimize my allergies, this nurse even went an extra mile to make sure I knew that everything was prepared how we needed it to be.  She would physically show me everything they were going to use and that it was latex and preservative free (I didn't even ask for that).  She also double checked that they had on hand preservative free epinephrine in case they needed to use it in an emergency.  If I asked a question, she answered it or found the answer.  I could go on and on about how she went above and beyond and how they were so cautious...they even checked to make sure the saline and heparin were preservative free too before starting any of my IVs.  They were good about only starting one drug at a time and watching for a reaction.  I am telling you, it felt like God was right in the room directing everything. Who knows, maybe that nurse was an angel. :)

Next came the physician assistant and surgical nurse.  They were both amazing as well. So sweet, funny and caring.  I think they were even younger than Brian and I...I knew the day would come when that started happening, lol.  They took the time to talk to us about what was exactly going to be happening during the surgery.  They were so reassuring and also took every extra precaution.  They used two drugs to sedate me that I had used before and that I wasn't allergic to even though that was not part of their normal protocol.  The procedure seemed to go by very fast and I was awake during it.  However, I didn't care much about what was going on. :) They even let me pick the music to listen to in the surgical room. :)  They were great!  I came out of the procedure just fine and with no complications.  The picture on the left was right after the procedure in recovery. You should be able to see the small incisions. Oh, and the green dye is antiseptic, I am not turning green. :)

After we were done, we went over to my doctor's office and had my first infusion.  I was still pretty loopy and the doctor even commented about how quiet and calm I was, lol.  The picture on the right was right after the nurse accessed my port for my first infusion.  We had one small reaction of the day to the adhesive bandage they put over your port while it's accessed so that no bacteria will enter into the opening.  It's absolutely necessary that this is kept completely sterile.  If any bacteria gets in through the small opening, you can quickly get a life-threatening condition called sepsis which can happen in seconds.  The nurse wore a mask and gloves while she did everything.  She started training Brian and I how to run the IVs, but to be honest, I don't remember much...thank you drugs.  :)  I am sure I will get plenty of practice in the weeks to come. The picture on the right is what it looks like when my port is accessed and I am receiving IV treatment. Sorry, it's a little blurry as it was taken by my cell phone. :)

Water Update - We found out that I can tolerate drinking small amounts of Aquafina periodically through the day.  We are hoping that my body will calm down enough for me to switch back to drinking our own reverse osmosis water, but praise the Lord He has provided something in the mean time.

I am not going to write a huge list of prayer requests as I did that on my last post, but please be praying for healing from the surgery and also no port complications.  Please also be praying for my upcoming treatment and that we would start seeing results soon! How amazing would that be!!  We are believing God for my healing and we are excited to watch Him work!

Well, I need to go lay down.  Still feeling the after effects of everything.  Thank you, thank you, thank you for all of your prayers!!!  We felt them all day yesterday.  We had a miraculous day and saw God everywhere and in everything.  Never in a million years did Brian or I think that we would come out of yesterday with only one small reaction to a bandage after all that I was exposed to.  God was our miracle worker and all glory goes to Him!!!!