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!