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!!!!

T minus 2 days = Prayer!!!!

Well, I was going to wait and write this post the night before, but after what has transpired the last 72 hours, I felt the need to write it now. As most of you know, on Thursday, August 26th at 11:30am I will be getting a port installed in the wall of my chest to administer long-term IV treatment. Yes, it will be much better then getting poked a gazillion times each week (my veins will be cheering!) AND yes it will enable us to do a lot of stuff at home AND yes many people have gone through this procedure and been just fine; however (you knew this was coming) it doesn't make it easy breezy in our case.  My chemical sensitivities cause a severe challenge in our "normal" day to day life.  We keep our world small and uneventful so that my body stays as stable as it can without putting me into a bubble.  Yes, I have heard of the bubble boy and believe you me, sometimes I feel like it! :) This small world is kept pretty controlled especially when I have an upcoming doctor's appointment, procedure etc.  The more stable and allergic reaction free my body is, the more chances I have to not have a bad reaction to my environment.  However, even when we do our best, sometimes it's not good enough.

This brings me to the last 72 hours which have definitely not been fun.  On Saturday, my protein of the day for my rotation diet was pork.  No big deal, I have eaten it before.  It should have gone off without a hitch.  However, starting at about 2am I had extremely severe stomach pains.  The kind that just take your breath away.  This lasted until about noon the next day.  I can usually figure out what makes me react because I don't eat a lot of food on this rotation diet.  So, in this case, we are suspecting the pork.  Usually, when I start reacting to food, I freak out because I can't really afford to lose any of the foods in my tiny list of 12.  However, this time, I was pretty calm and didn't worry about it much.

Monday was a chicken day.  I got up in the morning to eat my chicken breast for breakfast (yum, NOT!) and I had a throat/asthmatic reaction.  Not good.  Definitely prefer the stomach cramps to the latter.  Now, it's beginning to bother me a bit.  I was set to go to my chiropractor to get an NAET (acupuncture allergy treatment), so I knew I could talk to her about it. I had her re-test me for both pork and chicken and I did not turn up allergic to it.  However, she said there is a good chance that it could be either something they rinsed the pork/chicken in or the packaging.  That made sense because starting about 3 weeks ago I felt like I wasn't tolerating any meat from this certain store, but it never made me react bad until this past weekend.  So, we are off, once again, to find a new place to buy meat.  Whole Foods is first on our list; however, that does not come at a cheap price! It's organic though and hopefully, I will be able to tolerate it.

Now onto the most disturbing of all of this.  On my last blog post, I had written that I was not tolerating water again.  That seems to be one of the first things to go for me when my body gets set off.  However, thanks to all of your prayers and the amazing God we serve, within two days, I started being able to tolerate water from our under the sink reverse osmosis system.  This worked great until yesterday.  Now, I am reacting to water again. Ugh...not the best timing at all.  We are desperately praying that things will settle down before tomorrow morning.  I can always have my chiropractor do an NAET treatment for the water, but we really needed her to treat me for nitril gloves (the choice preferred by doctors for surgical procedures when you can't have latex) that they will most likely be using during the surgical procedure.

So, now I get to our prayer requests. 

1.  Please pray that we can find some safe foods and that my water allergy will go away.  We serve an amazing miraculous God and we are on our knees about this.  I need to be well-hydrated before I go into have this procedure, so God needs to move this big mountain. 

2.  Please pray that my body would settle down allergic reaction-wise.  I have not had a huge success rate when it comes to being in a hospital and not reacting to it ever since I got so sick 5 years ago.  So, we need my body as reaction-free to start off with that day. 

3. Please pray for this procedure and for God's protection.  We have done our best to double check drugs, preservatives in drugs, materials that they will be using etc.; however, it's impossible to control everything that I will come in contact with.  If you could please pray that there would be no reactions before, during and after the procedure to anything.  What a miracle that would be!!!  We are believing that God can do it! Pray also that the doctors and nurses would have wisdom when it comes to handling my case as it is not normal in any sense.  Even a simple thing like the cologne or aftershave of a doctor could send me down a not-so fun road. :P

4.  We are asking that you would pray for the spiritual aspect of this fight.  My husband and I believe strongly that there is a spiritual world in which a battle ensues every second.  As we have been on this journey, we do not think that it is any coincidence to see the number of Godly people that have been taken out of ministry because they have contracted Lyme Disease.  In fact, a lot of my friends feel the same way.  It has been our experience (and the experience of others) that whenever we start to head down a path of wellness (starting a treatment, finding a new doctor etc.), that we feel attacked in about every area, but especially physically.  Now, we aren't normally the kind of people to give to much thought to this; however, we feel so confident that this is the path we should be taking with this doctor and treatment, that it doesn't surprise us that my body is being attacked so that we don't make any progress or headway.  I think the evil one knows that once I am well, he'd better watch out!  Brian and I are going to jump right into ministry and nothing is going to hold us down. :)  So, please pray for God's protection over both of us. Also, please pray that we would sense God's peace and joy and that our faith would be a testimony to others as I go through treatment.  It's our desire to make the most of every opportunity that we are given, so if He can use us now and in our current state, then we are ready and willing.

5.  Finally, please keep praying that God would provide financially and at the times we need it.  We sat down two weekends ago and did our cash flow and figured out that my treatment is going to cost us $1600 each week for a total of $45,000.  Ouch!  We have some of that, but now that we have dived deeper into the details financially, we have realized that we are short about $10,000 to $15,000.  I think we were hoping that we wouldn't be as short as we expected when we sat down to look at everything again; however, it ended up being more.  I will be honest and tell you I was the first one who calculated everything (I got the smaller figure) and then my husband (who is an accountant) did it and got the more accurate figure. :)  We'll just chalk it up to his extra schooling. :) So, please continue to keep praying that God would provide financially and also that he would provide the help we need for me to get to my Monday appointments (we still have some holes that need to be filled in my appointment schedule).

Well, that is all.  If you are on Facebook, we will make sure to post an update on my profile page on how the procedure went or any updated prayer requests.  If you can only check this blog, I will try to have Brian update it Thursday or Friday evening as my guess is I won't be feeling the best. :) I know that I say this a lot, but we do appreciate all of your encouragement and support.  Thursday begins my journey to wellness and it is so comforting to know we won't be doing it alone.  We serve a big God who will be with us every step of the way and we have priceless family and friends who will be there too!  "See" you soon!

16 days and counting...

Things are going to drastically change in 16 days. I can't believe I will be getting my PORT that fast. It seems crazy as I look back on the last 5 years that we are in this place; however, at the same time, we are hopeful and excited about the possibilities of finally finding something that will help me get well!

I will give you a brief update on what has taken place since I last posted. We got our new car! Yay! We are so blessed at how the Lord provided. It still brings tears to my eyes. He is truly our Jehovah Jireh! This week, Brian is spending time detoxing it. That basically means he is deep cleaning every inch of that car, so that I have the best possible chance of not reacting to it. Thankfully, it is a used car, so we don't have to deal with the harsh chemicals of something that just came out of production.

Last Wednesday, Brian's parents came to visit us. I cannot put into words what a blessing it was to have them here. Thankfully, the Lord kept my reactions to a minimum and also allowed me to feel somewhat normal (my normal though, is drastically different to a "healthy person's" normal). I did crash afterwards, but it was worth it!! It was so nice to have company and to be able to have Christian fellowship. We were so encouraged by their visit. Brian was excited that I actually got to have human contact, lol. I think I talked his parents' ears off. LOL The only people I usually get to see are my doctors and it's funny because I am such a chatter box during my appointments. Brian always teases me about it. I think it's because I am so isolated all the time. Talking on the phone, chatting on Facebook and e-mailing have helped me to feel not so alone; however, having someone actually be able to visit is so precious! So, a big thank you for the sacrifices they had to make to drive down here and also to stay at our house. We appreciate and love you guys!!

I had a phone appointment with my doctor today. It went very well. I have to just say how incredible my doctor is.  She not only shows so much compassion and kindness to her patients, she also knows when to push her patients (in a good way) so that we will push past insecurities in order to get well.  The clinic treats us like family, and my doctor sends me e-mails written by her!  If I call, there is no nurse to go through.  My doctor will talk to me directly or she calls back.  If something happens, she gives her patients her cell phone.  Sometimes, I have to pinch myself as I have so many friends who are one of 1000's and have to go through so much red tape to get a question answered.  I praise the Lord over and over for such a wonderful gift.

We were able to discuss my current issues including foods that I started reacting to and what options we have for replacements and also my upcoming procedure. A big part of the phone call was discussing what they could possibly use to knock me out during the procedure. I am allergic to Versed (one that is often used for short procedures) and I did some research about another one called Propofol that she said they could use instead. However, that one has soy and egg lecithin in it, so it's a no go. So, we are left with having to dose me up on a synthetic morphine which I have tolerated before and also a ton of Ativan. She said it should knock me out. I told her that was important because I don't do to well in the twilight sleep. :P I did tell her that I have some trouble with high doses of drugs like Ativan, Xanax and Valium. However, she said that we have to get that PORT in you, which she is right. So, if it means pre-treating with Benadryl and pushing through symptoms, then so be it. I am just going to have to hand it all over to the Lord and have Him guide and direct the surgeons and other personnel working with me. Boy, will this be a faith walk. I think that I have said before, this whole journey is a faith walk. However, I have gotten to the point where I want to get well, and I am willing to go to whatever lengths it requires to get there even pushing past the huge scary stuff.

As far as a financial and a help update, we are still trusting God for everything. I wrote out all of the dates that we need assistance and it looks like it's only 8 Mondays total in the months of October, November and December. As I wrote before, the first seven weeks are covered and then my family will be coming down around both Thanksgiving and Christmas and wrapping their stay around one or two Mondays to help cover those appointments. My doctor is awesome at letting us only have to go up to Phoenix once a week for Monday appointments once we get past the initial introduction of the drugs. Usually, they make their patients come to the office for almost all infusions; however, she is going to train Brian on how to mix the IVs and handle my PORT, so that we don't have to travel as much. Again and again, we are so blessed with such a wonderful physician handling my case and her willingness to work with us so that I get well.

Financially, we have tallied up everything and we are still about $10,000 short. However, as is evidence with the testimony of getting a car, God provides in amazing ways. I am really not concerned about our shortfall. I know that in His time, he will provide for us and that the bills will be paid. It's crazy walking out in faith like this and starting a treatment where you know you can't pay for all of it at this moment. However, that is where faith comes in and we are confident that we are right where God wants us. Some of the most exciting times in our marriage have been where we looked at a huge mountain and saw God bulldoze right through it. Good mental picture, right?! :)

Before I get to our current prayer requests, we have had one more tiny bump in the road that has come up in the last 24 hours. As you know, I am extremely allergic to pretty much everything. Over the years, one of the challenging road blocks that we have had to overcome is my allergy to water. I know it seems insane, but welcome to our world. The only water I have been able to drink is Culligan bottled water from Phoenix. They have a special purification system that Tucson does not. So, every three or four months, Brian has had to go up and purchase bottles on a Saturday. It's not that bad because they do last for a long time. Well, we just found out they have changed something in their product. So, we will have to try it and see what happens. Another option that we have currently is a recently purchased reverse osmosis system for our kitchen sink. At this point, we are not sure which will work or if any (that's always the scary part). We are in the trial stages as you can tell. Water is always such a scary and difficult hurdle for me if I'm being honest. Obviously, it is necessary for survival, so finding a source that I can drink is crucial. The testing and trial time is always a time that I have to hand over to God. He knows that my body needs water and we are trusting him to provide the source. So, that leads me into our prayer requests.

First, please be praying that we can find a water I can tolerate. We would love it if it could be from one of the above sources! Second, please keep praying for volunteers to help us in the months of October, November and December as I need to get up to my doctor's appointments on Mondays. Third, please keep our financial need in your prayers. We are so blessed by all of your prayer support. It is so comforting knowing that our friends and families are lifting us up. Talk to you soon! :)

My dear friends....

Hi! I know it has not been that long since I made my last blog post, but I felt God lay something on my heart, and I want to share it with you.  If you have not read our latest update, you can access it here:  We have a date!

As you know, this illness has been pretty isolating for Brian and I.  However, thanks to the internet, I have come into contact with so many dear friends who are also suffering from Lyme Disease and other conditions/co-infections.  It is amazing to me how through the gift of technology, we have all connected. These are wonderful people who suffer daily from the devastating effects of this disease.  Their physical struggles are intense and often painful, and the emotional and mental effects of the isolation and the never-ending struggle to search for a cure sometimes becomes too much to take.  Many of these individuals were healthy to begin with and then had their life suddenly stripped from them.  Some were taken out of ministry, some were taken away from their families being too ill to participate in day to day activities and some have had family and friends leave them after the battle for health goes on "too long".

My heart breaks for everyone of these precious people.  Many of them have seen some of the top doctors all over the country only to remain ill and unable to enjoy the world before them.  Their financial resources are being drained as they try to seek help and insurances refuse to pay for the necessary treatment.  Let me share with you about the lives of some of these people...

I know of one blog about a family who has 5 people with Lyme Disease.  They look at each paycheck and most of it goes to medication.  They have to pick and choose what drugs they use depending on what they can afford that month instead of being able to do whatever is required to get their family well.  

I know of another precious girl (who I have adopted as my younger sister :) ) whose physical struggle would boggle your mind.  She has MCS like me, but struggles daily for survival.  Her blood pressure is unstable and drops to the point where people in the room seem distant.  Her financial resources are almost gone and she is wondering how she will stay alive without the food and medicine that she so desperately needs.  Yet, through it all, she is positive, encouraging to others and is always willing to help in any way she can.

I have another wonderful friend who has Lyme along with her husband.  They were high school sweethearts and married young.  She was to become a nurse, but then was bitten by a tick.  Things quickly went downhill.  At her worst she was suffering from daily seizures, trouble communicating, extreme pain and the inability to walk.  At the same time, her husband suffered form horrible fatigue and migraine headaches.  Both of them are in treatment now and are improving.  However, through it all, their faith has ministered to my husband and I so much. I have never met anyone like them.

I know of two incredible ladies who have become like second Mothers to me.  They have been battling this disease for years and are tired.  They have had to watch what it has done to their families.  One of them has been through more medical tests then the average person experiences during his/her lifetime.  I personally know that she yearns for heaven and for the Lord to take her every day.  Both of their faiths are so strong, and they encourage so many people despite their limitations, but the battle gets tough and some days are harder to get through then others.

I know of another girl who has Lyme and just delivered a baby.  Her pregnancy was very difficult as she struggled to make it through the Lyme symptoms that seemed to increase the closer it got to her due date. She suffered from small seizures, muscle twitching, fatigue and pain.  She should have been able to enjoy every moment of her pregnancy, but instead she was researching whether or not to get her baby tested for Lyme Disease as it can be transferred congenitally.  Her precious baby just arrived and they are enjoying him tremendously; however, I am sure in the back of their minds they are wondering if their son will have to face this same battle.  Also, now that she is done with her pregnancy, she is heading back into treatment.

These are just a few examples of what this disease does to the individuals who it attacks and to the families that it hits.  I have such a burden for all of these people.  I pray for them all daily.  There is such a need for Lyme Disease research; accurate tests need to be developed and treatments need to be perfected.  Our communities, states and world need to wake-up to the fact that there is a disease out there destroying lives and nothing is being done about it.  Please be in prayer for the Lyme Disease community.  The physical, emotional and mental pain that this disease causes exceeds what I can adequately portray in this post.  Please join with me in prayer....

"Father God, I pray for those who have Lyme Disease.  God, I pray that you would touch them and let them know that you are there for them.  I pray that you would give them relief from the physical, emotional and mental struggles that they battle each day.  Please reveal yourself to them in a new way.  I pray for the doctors who are not ashamed or fearful to help these patients.  I pray that you would protect them so that they can keep practicing.  I pray that you would give them wisdom on how to help their patients reach a state of wellness and that they would have the courage to press on when they face adversity.   God, I pray for the families that are suffering.  I pray for the mothers and fathers who are too ill to take care or be there for their children.  I pray that the children would understand and that their extended relatives and friends would rally around them for the long journey.  Lord touch the children who suffer also.  Help those that are too young to understand, to feel comforted.  Help those who are young to know that your purpose is great.  Jesus touch all of these hurting people.  Give them the strength to not give up.  Help them to cling to you when it gets tough.  Bless them abundantly.  In your name...."

Below is a video of a song by Britt Nicole.  I was reminded of this song the other day.  It is amazing to me at how accurately it depicts the life of those who suffer from this disease.  Jesus, it is our prayer that you will "Have Your Way".  Remember, to listen to the song, you will need to push pause on the music player at the bottom of my blog.