The rug that didn't stay put!

Well, it has been a very interesting and difficult three days.  I have been waiting to blog because at first I was too upset, and then I just didn't know what to say.  However, it's been about 24 hours from our big shock and the trauma is finally beginning to wear off.  I can finally talk about it without crying.  However, who wants to start off reading a blog post without some positive things. Not me!! I do have some of those, so let me take a crack at that first.

Wednesday, Brian and I drove to Phoenix to have my first IV Vitamin C infusion.  For most people, this would not be a big deal; however, I have stayed away from anything invasive for 4 years. The last time I was in the ER and was given an IV saline flush, my throat started to close off as a result of an allergic reaction.  So, you can see why I got good at the game of avoidance!  Back to our appointment....I will fully admit that I was not the definition of calm.  I was a nervous wreck.  They gave me a form to fill out when we got there and I was so distracted that I couldn't even complete it.  It took me like 10 minutes to get the thing done.  I am such a nerd, lol.  However once everything got going, we had a wonderful experience.  The staff at the clinic was amazing. They were so good with me.  I was so embarrassed for being 30 years old, but they fully understood and reassured me that after all that I had been through, it was justified.  They did a sublingual (under the tongue) allergy test to the Vitamin C before we inserted the IV.  I passed!!  I was able to take 12500mg of Vitamin C. I was so proud, but then I had to laugh because their normal dose at the clinic was 50000mg. So, I have a ways to go, but baby steps right?!!  My doctor came into check on me and was excited to see how well I was doing.  She then proceeded to tell us that she thought I was ready for the port procedure and that we can get the ball rolling as far as scheduling and checking with insurance etc.  I was kind of shocked, but then again, this whole experience has been one big roller coaster ride. 

She wanted to do one more test and that was to make sure I wouldn't react to heparin.  When you have a port in your chest, after each infusion, you have to flush it with a saline/heparin flush so that no blood clots form in the line.  We did this test also sublingually and although they really diluted the drug, I tolerated it okay.  So yay for another milestone!  These seem like simple and easy things, but when you are as allergically sensitive as I am, it is a big deal.  We left the clinic at about 2:00 celebrating our successful trip and also praising God for such a wonderful doctor and clinic.  They are truly amazing. 

On the ride home, we addressed some subjects that we have talked on and off about; however, they have surfaced more as we get closer and closer to starting our IV treatment journey.  First, when I am on IV, I will need to go up to Phoenix once or twice a week.  Currently, the only car I can ride in (I have horrible problems with all the chemicals that are in cars when they are made) has over 105000 miles on it. Our trip up and back to Phoenix puts about 200 miles on our car each time we go.  We have a Malibu and it's starting to get to that stage where it is as not as reliable.  Usually, we would drive the car into the ground; however, we have to think of safety too.  As I am traveling back and forth to Phoenix, I am going to be very sick. We can't have the car break down as it will be extremely detrimental to my health not to mention the trouble I would have with my chemical sensitivities in a rental car, a mechanic's shop or in another mode of transportation back to Tucson if we couldn't get it fixed.  So, we have started researching cars that are best for people with chemical sensitivities and what we have found is that Honda Accords use the least chemicals and if we get one that was made around 2007, it will have off-gassed enough to be safe.  However, they are expensive and to think about trying to afford that and treatment makes our head spin.  So, we are in the process of trying to decide whether or not make the jump now or later and how in the world we are going to afford it. 

Another thing we discussed is how this was going to all work logistically.  I am so allergically sensitive and will get very ill on IV therapy, that it will not be safe or feasible for me to be by myself while going through treatment while Brian's at work and also to drive myself to Phoenix once a week.  Hopefully, as I improve, the help we will need will get less and less, but until Christmas, it will be necessary.  That presents a pretty big problem as we don't know hardly anyone in Tucson that can help us because of how isolated we have had to be because of my illness.  It's not exactly easy to have people walk into our world.  They have to be scent free and believe it or not, that is pretty difficult in today's day and age where every lotion, body spray, make-up, laundry detergent etc. has a welcoming scent.  For people without chemical sensitivities, it's welcoming, but for people like me, it can quickly turn into a trip to the ever-dreaded hospital (which usually makes me sicker with the amount of chemicals in the air).  So, we need a lot of help, but are not sure where it's going to come from.

Now, we get to the part where the rug was pulled out from under us, hence the title of this post (it definitely did not stay put!!!).  This is the part that would make any normal person's head come OFF.  While we were at the appointment on Wednesday, we asked the office manager to give us an approximate treatment figure.  She said she would e-mail us, and we finally received it last night.  Let's just say that I wish I would have never opened that little e-mail.  The amount of my treatment is astronomical.  We knew it was going to be bad.  We were prepared for that.  However, the dollar amount that we received was horrendous.  Brian and I are about $25,000 short.  Yep, I just typed that number...your eyes did not deceive you.  I just started crying and have been crying off and on since last night.  I want to get well so bad and this place is so perfect for me.  To find a physician that is so well versed in dealing with Multiple Chemical Sensitivities and also Lyme Disease is so rare.  For those of you that are reading this blog and are wondering why it costs so much, you can read about why insurances do not often pay for Lyme Disease treatment by clicking here:  About Lyme Disease.  Brian and I just do not have those types of resources.  Rarely anyone does.  I am one in a line of tens of thousands of people that are facing the same battle with insurance companies refusing to cover the treatment for this disease and therefore having to pay outrageous costs for the necessary treatment. It is so sad and just breaks my heart to see everyone have to literally go broke trying to get well. It shouldn't have to be this way. 

Brian and I were blown away by this number.  Between this and the need for a safe vehicle, it just felt like the world collapsed before our eyes.  We know we serve a big God and we know that He can do miracles and provide in awesome ways, but it doesn't make it any easier to look at the looming obstacles in front of you and wonder how in the world this is going to play out.  All we want to do is have a normal life.  To be able to enjoy christian fellowship with friends, to be able to eat normal meals and to be able to be used in ministry; however, the life we used to know, just seems to be fading in the background.  This battle is so tough physically and then you add the horrendous financial burdens along with the emotional stress, it can make the strongest people cave under the pressure.

We have been battling this illness for 5 years now.  It has been long and grueling at times.  We look at the months ahead and want to give up before we even start.  However, that is not what God would want us to do.  He is not in the business of letting his sons and daughters throw in the towel.  So, we have to use whatever strength we have left (which is not much at this point) and use it to trust God with everything we have that He is going to provide for all of our needs both physically and financially.  We have never in our lives had to trust God to this magnitude.  However, we know that the God we serve does not stay within boundaries. He is limitless! His resources far surpass what we as humans can wrap our minds around.  We will cling with everything we have and wait for God to move mountains.

So, that leaves me with our prayer request section.  It is basically the 3 areas that I mentioned above along with God's wisdom on what to do and when.  If you could first please pray that God would show us what to do about our car, so that I can be safe when I travel back and forth to my appointments.  Second, please pray that God would provide financially.  This is such a big number that every time I look at it, I either cry or panic.  However, God owns the cattle on a thousand hills.  He doesn't have a limit to his bank account.  We are just praying that God would provide for our needs in mighty ways so that I can get the treatment I so desperately need.  Finally, please pray that God would raise up individuals to come and help us.  Our situation is so abnormal because of how isolating my illness has caused us to be.  So, when others would have a large group to rally behind them, we are left with very few. 

Well, that is all for today. I hated writing this post because if you know me, you know that my personality is positive, bubbly, happy and joyful. However, this disease has definitely taken it's toll and the last three days have been probably the most difficult we have ever experienced.  Thank you for taking the time to read this.  That in itself means so much to us.  Thank you for your prayers, encouragement and support.  It's what is helping us to put one foot in front of the other and to look upward to our Savior.