So......we have a date! Wow, that even sounds crazy to me when I say it. On August 26th, I will be getting a PORT catheter inserted into the wall of my chest with a IV line going directly into my heart. Sounds pleasant doesn't it? I try to not to think about the details as it makes me want to turn tail and run. :) However, this is my journey to wellness, and I won't give up until "healthy" becomes my reality. I will update you about our phone appointment, but we have had some answered prayers, and I want to make sure I tell you those first.
First, on my last blog post, I had written about needing a car. Well, God worked a miracle and found us a great car with some assistance. It will be perfect for my health and we are getting it on Wednesday. Now, the poor car will have to go through some detoxing as it will have to be cleaned extremely well and "de-scented" (that's probably not a word, but it's one we use quite often in our house), so that I can drive in it. So, unfortunately, I won't be able to use it for awhile, but we are so thankful for God answering that need. It will be such a relief to have something that is safe and reliable to transport me to and from my appointments in Phoenix.
Second, after getting the medical quote from my Lyme doctor's office, I wrote an e-mail to the office manager about how 1) we couldn't even attempt to afford that expensive of a treatment and 2) part of the treatment protocol was something Brian and I had decided we did not want to do. Well, I received an e-mail back saying we should schedule a phone appointment with the doctor the following week to discuss everything. That appointment was yesterday and it went VERY well. However, our answered prayer came in the form an of a wonderful e-mail that we received right before our phone appointment. It contained a different treatment plan/cost that was more what we wanted to do and also more affordable.
Now, when I write "affordable", I have to laugh because it's still a whole ton of money and we are still short. However, the gap closed a little and instead of being short $25,000, we are only short approximately $10,000. That is SOOOO much better. Now, some of you may be reading this and wondering why I am so positive when we are short that much. Well, it has been our experience that God always provides in some way shape or form. So, we are just trusting that God will close the gap and provide for our needs like He always has. It is still kind of a scary number when you look at it; however, we serve a God who can work miracles, and we are just trusting and walking in faith knowing that God has guided us and directed us this far and He will continue to do so every step of the way. One thing we have learned over the years is to believe God for big things! He is the ruler over the universe and no circumstance is out of His control. So, although this will stretch our faith big time (well, this whole journey has stretched our faith "BIG TIME"), we are ready and willing to take this leap as we know God will be there to catch us on the other side.
Now to my phone appointment and some details about the upcoming months. It was a blessing to have Brian conferenced in on the call. We are so grateful for his work and the flexibility they have given to him to be able to do things like this. The appointment started off talking about the e-mail we received and the costs of my upcoming treatment. She was very understanding of our situation as I am sure she has to go through this with every patient. Almost all Lyme patients have spent thousands in medical costs before receiving a diagnosis. So, by the time we reach the appropriate physician, our reserves are pretty much gone. Some take out loans, some get donations and some scrape together what is leftover from each paycheck. However, the "how" does not matter to all of us at this point. Our goal is to find a physician who can help us get healthy. Brian and I are confident that we have found a brilliant and perfect physician. Her knowledge about both of my conditions is incredible and every time we talk to her, we are in awe of her compassion and determination to see my reach a state of wellness.
The plan that is set for right now is for me to have my PORT inserted on August 26th. I will be having this done at a hospital in Scottsdale, Arizona. My doctor has worked with this hospital quite often and although they are not an expert in multiple chemical sensitivities (which can make any surgical procedure quite the challenge), they are at least are familiar with it. That is a huge blessing! I will be bringing my own bedding and surgical gown from my doctor's office so that we can keep me reaction free for as long as possible. After the PORT procedure is done, we will go to her office to have my first infusion and to receive a lot of care instructions. From there, I will be doing about 3 weeks of supportive/detoxification IVs to prepare my body for the antibiotics that we will start on week 4. We are looking at having to do IV treatment anywhere from 5 to 7 months. Brian and I are praying and hoping for the number 5; however, the goal is to get me well, and we don't want to stop to early if my body is not ready. My doctor will know when the time comes to make that decision.
Another thing we talked to the doctor about was my part-time job that starts at two in the afternoon Sunday-Thursday. While I am on IV therapy, I will need to see her once a week to pick-up my IV supplies and to do some treatments in her office on Mondays. However, we were concerned because my job requires me not to miss a lot of work. I tutor students in English and they expect me to be there and to not have to have a substitute. As I mentioned in my last post, I have to work and go to graduate school for us to be able to attempt to afford a large portion of the treatment. For me, graduate school is not luxury, but something I have to do (if you want to know why, please send me a personal message and I would be happy to explain). I have no idea how I will keep up this schedule while going through treatment because I will be SOOOOO sick. However, through God, all things are possible. He knows what I must do, and I am confident that His strength will help me succeed. I would temporarily stop both school and work if I could; however, it's not an option, so I will press on. We did talk to my doctor about my work schedule and she said that we could do most of the IVs at home except for the first time we infuse a new drug. We will be taking everything very slow as we have learned that my body does not like to be rushed. So, she said that my baby doses of meds will have us out of the office in time for me to get back home to work my shift. So, I am probably going to feel like junk, but I will be there and that is what is important.
Now onto the part that I wrote about in my last blog post, but I know that I wasn't super clear about the details. This treatment is going to make me very ill as the bacteria is being fought in both my brain and body. My friends have experienced extreme fatigue (the kind where lifting your head wipes you out), seizures, brain fog (things just don't make sense and you can't understand what people are saying to you), allergic reactions (pretty common for patients like myself), trouble communicating, walking and the list just goes on and on. We are praying with all of our hearts that none of the above happens because of my work and school schedule, but we have to prepare for the worst.
When Brian and I moved to Arizona, I was already sick and had to be kept pretty isolated so my condition would remain stable. Brian was working two jobs to help make ends meet and going back to school. So, even though we would have loved to attend church, I could not because of health reasons and Brian usually had to stay home to take care of me. We have missed christian fellowship so much. We do listen to sermons via podcasts, but it's just not the same as being able to attend somewhere.
So, I can honestly say that the only people we know down here are the people that Brian has worked with. Brian has started attending a church in the last six months, but has not been able to go often, so relationships there have not been established yet. This is where we come to the most difficult part. You thought it would be the finances right? Nope, I think it will be this dilemma. I will be too ill to drive myself up to Phoenix for weekly for appointments and Brian can't take off work. Praise the Lord, through relatives and a friend, we have the first 7 weeks covered which will take us up to the second week in October. Holidays are also covered (Thanksgiving and from Christmas to New Years). However, Brian and I are pretty confident that I won't be able to be well enough to drive myself to my appointments until January. So, if you could please be praying that we would have enough help getting me to my appointments in Phoenix each week, we would really appreciate it. At this point, we are not sure how this is all going to work out, but know that we serve a big God and He can make it happen. :)
Well, that is our update! Obviously, the last topic and our financial need are our two big prayer requests. We are confident that God will meet our needs, and we are going to surrender it to Him and watch Him work. The last thing we would ask for you to pray about is for me to stay reaction free and that my system would remain stable. I am going to be trying a number of supplements in the next couple of weeks leading up to my procedure. That is never an easy task because I am allergic to the world, lol. So, we would appreciate your prayers that things would go smoothly and that no major reactions would take place.
Sorry this is so long! I will update soon! Please know that all of you are in our prayers. Blessings to all of you!
Saturday, July 31, 2010
Friday, July 23, 2010
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.
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.
Saturday, July 17, 2010
What's for breakfast?
Well, I decided to title this post "What's for breakfast?" even though I also want to update you on my phone appointment that I had this past Thursday. However, let's play the guessing game first. So, what do YOU think is for breakfast?
Cereal? Nope! Oatmeal? Nope! Fruit? Nope!
Are your ready for the answer? Well, we have an assortment of things, take your pick: chicken, steak, turkey or egg whites (hey, we actually have a breakfast food in there!). This is a picture of my new diet. It's been a challenge to adjust to, but I am making it. My doctor doesn't want me to eat any carbs as she says they are being converted into toxins in my body. She was right on the mark! For the first time, I am sleeping through the night about 10 or 11 hours. I haven't done that for over a year! So, Yay for good doctors, but most of all Yay God!!! I do get to eat fruit and vegetables (frozen and cooked of course) and we are adding to my food list slowly but surely. This is definitely a great weight loss tactic! Five pounds in six days! Whoohoo! :) My metabolism is still adjusting, and my doctor said I am still going through carb withdrawal which basically makes you feel like your legs are jello and you are just plain shaky. However, I have been told by my doctor and by my friends that my body will adjust soon.
So, onto the doctor appointment. I was so excited to talk to her on Thursday! That says a lot as my experience with my long list of doctors doesn't really make me usually happy to meet with them. At the beginning of the appointment, we went over my current diet. She was excited to hear about my progress and encouraged me to keep going even though it was tough. She said we will eventually add back in some whole grains, but not now.
Next, we talked about her recommendations. She wants me to have a whole bunch of tests which include a metabolic panel, a new Lyme test (she wants to see if I am going to test more positive since I hit the bugs with antibiotics this past year), a complete co-infection panel (testing for Bartonella, Babesia and other parasitic infections...my former Lyme docs thought I had both) and some others that I can't remember right now. :P
Then, we talked about the next few months and her goals for my treatment. On Wednesday, I will be going into have some of the blood tests done. I will also have my first Vitamin C infusion. This is a big step for us as the last time I had just a normal saline IV, I reacted. However, my doctor thinks this will be really beneficial to me as it will help me fight the bugs and also help me to start detoxing which is the key to get my MCS to improve. She used to be an ER doctor, so that brings me comfort along with the fact that we serve a BIG God, and He is ultimately the one that will protect my body. She wants me to start having those treatments pretty regularly, but we are not sure how that will work logistically as Brian can't take off work two times a week, and I can't drive myself up and back from Phoenix because these have the potential to make me pretty sick as it will be fighting the bacteria.
Finally, we talked about when I would be getting the PORT installed in my chest. Basically, a PORT is a central line catheter that is installed in your chest wall just below the surface of your skin with a line going to your heart. It's a way to deliver drugs to your system quickly and also conveniently as you don't have to have a new IV installed in your arm every time you need to have treatment. My doctor said that the sooner we can do this the better as then I can do my treatments at home without having to go to Phoenix. That will be really nice. They will train Brian in how to take care of it and give me infusions. Then, Brian will train others who come down to help. However, we are kind of in a bind which I will explain.
To have the PORT procedure, I need to get my MCS to improve. Currently, 20 minutes in a hospital because of all the chemicals makes me react big time. Right now, I am just too sensitive to be able to successfully withstand the procedure. As you can see, we need to make a dent in the MCS category. However, to get my MCS to improve, I need to be able to go up to Phoenix and get Vitamin C and other treatments and we are not quite sure how that is going to work as I won't be able to go up there by myself. So, you can see the quandary that we are in. However, we know that God has it all planned out and we are just praying for direction. We are going to talk about everything with my doctor on Wednesday if we get a chance. I am not sure if we are actually meeting with her or just doing testing and the infusion. The time table that she did give me is that she wants me to get a PORT in two months. It will be here before I know it!
The most encouraging thing she said to me on Thursday is that she believes that all of this will really help me improve my health. She has a patient much like me who has followed her recommendations and she is 100% improved from where she was the year before. That is so exciting! It's hard for us not to hope in this new doctor, but we know ultimately where our true hope needs to lie. It needs to be in God, and if he chooses to use this treatment and this doctor, then all glory be to His name!
Well, that is the update! It's not as many details as I had hoped to get, but we have a plan, and it is exciting to be able to start on it. If you could be praying for a couple of things, we would appreciate it. First, please pray that my body would continue to adjust to the diet, and that I will be able to add more foods. Second, please pray for next Wednesday's appointment and that my body would tolerate the treatment. Third, please pray that Brian, the doctor and I would have wisdom on how to prepare my body for the PORT procedure. If that means getting up to Phoenix at least once or twice a week, then it is our prayer that God will open doors for me to get there. If it's finding someone local who can do the infusions, then we pray God will open that door instead. If it's just going ahead with the PORT procedure sooner (my doctor said this might be the way we have to go), then I pray that God would show us that too! Finally, please pray that God would provide financially and that a miracle would happen and our insurance would even pay for the procedure, all of these tests and also the treatment! That would be amazing!!!
Well, that is all for now! I will update after next Wednesday's appointment! Thanks for praying!! Blessings!!
Cereal? Nope! Oatmeal? Nope! Fruit? Nope!
Are your ready for the answer? Well, we have an assortment of things, take your pick: chicken, steak, turkey or egg whites (hey, we actually have a breakfast food in there!). This is a picture of my new diet. It's been a challenge to adjust to, but I am making it. My doctor doesn't want me to eat any carbs as she says they are being converted into toxins in my body. She was right on the mark! For the first time, I am sleeping through the night about 10 or 11 hours. I haven't done that for over a year! So, Yay for good doctors, but most of all Yay God!!! I do get to eat fruit and vegetables (frozen and cooked of course) and we are adding to my food list slowly but surely. This is definitely a great weight loss tactic! Five pounds in six days! Whoohoo! :) My metabolism is still adjusting, and my doctor said I am still going through carb withdrawal which basically makes you feel like your legs are jello and you are just plain shaky. However, I have been told by my doctor and by my friends that my body will adjust soon.
So, onto the doctor appointment. I was so excited to talk to her on Thursday! That says a lot as my experience with my long list of doctors doesn't really make me usually happy to meet with them. At the beginning of the appointment, we went over my current diet. She was excited to hear about my progress and encouraged me to keep going even though it was tough. She said we will eventually add back in some whole grains, but not now.
Next, we talked about her recommendations. She wants me to have a whole bunch of tests which include a metabolic panel, a new Lyme test (she wants to see if I am going to test more positive since I hit the bugs with antibiotics this past year), a complete co-infection panel (testing for Bartonella, Babesia and other parasitic infections...my former Lyme docs thought I had both) and some others that I can't remember right now. :P
Then, we talked about the next few months and her goals for my treatment. On Wednesday, I will be going into have some of the blood tests done. I will also have my first Vitamin C infusion. This is a big step for us as the last time I had just a normal saline IV, I reacted. However, my doctor thinks this will be really beneficial to me as it will help me fight the bugs and also help me to start detoxing which is the key to get my MCS to improve. She used to be an ER doctor, so that brings me comfort along with the fact that we serve a BIG God, and He is ultimately the one that will protect my body. She wants me to start having those treatments pretty regularly, but we are not sure how that will work logistically as Brian can't take off work two times a week, and I can't drive myself up and back from Phoenix because these have the potential to make me pretty sick as it will be fighting the bacteria.
Finally, we talked about when I would be getting the PORT installed in my chest. Basically, a PORT is a central line catheter that is installed in your chest wall just below the surface of your skin with a line going to your heart. It's a way to deliver drugs to your system quickly and also conveniently as you don't have to have a new IV installed in your arm every time you need to have treatment. My doctor said that the sooner we can do this the better as then I can do my treatments at home without having to go to Phoenix. That will be really nice. They will train Brian in how to take care of it and give me infusions. Then, Brian will train others who come down to help. However, we are kind of in a bind which I will explain.
To have the PORT procedure, I need to get my MCS to improve. Currently, 20 minutes in a hospital because of all the chemicals makes me react big time. Right now, I am just too sensitive to be able to successfully withstand the procedure. As you can see, we need to make a dent in the MCS category. However, to get my MCS to improve, I need to be able to go up to Phoenix and get Vitamin C and other treatments and we are not quite sure how that is going to work as I won't be able to go up there by myself. So, you can see the quandary that we are in. However, we know that God has it all planned out and we are just praying for direction. We are going to talk about everything with my doctor on Wednesday if we get a chance. I am not sure if we are actually meeting with her or just doing testing and the infusion. The time table that she did give me is that she wants me to get a PORT in two months. It will be here before I know it!
The most encouraging thing she said to me on Thursday is that she believes that all of this will really help me improve my health. She has a patient much like me who has followed her recommendations and she is 100% improved from where she was the year before. That is so exciting! It's hard for us not to hope in this new doctor, but we know ultimately where our true hope needs to lie. It needs to be in God, and if he chooses to use this treatment and this doctor, then all glory be to His name!
Well, that is the update! It's not as many details as I had hoped to get, but we have a plan, and it is exciting to be able to start on it. If you could be praying for a couple of things, we would appreciate it. First, please pray that my body would continue to adjust to the diet, and that I will be able to add more foods. Second, please pray for next Wednesday's appointment and that my body would tolerate the treatment. Third, please pray that Brian, the doctor and I would have wisdom on how to prepare my body for the PORT procedure. If that means getting up to Phoenix at least once or twice a week, then it is our prayer that God will open doors for me to get there. If it's finding someone local who can do the infusions, then we pray God will open that door instead. If it's just going ahead with the PORT procedure sooner (my doctor said this might be the way we have to go), then I pray that God would show us that too! Finally, please pray that God would provide financially and that a miracle would happen and our insurance would even pay for the procedure, all of these tests and also the treatment! That would be amazing!!!
Well, that is all for now! I will update after next Wednesday's appointment! Thanks for praying!! Blessings!!
Sunday, July 11, 2010
An Uphill Climb
Well, I know I said I would make a post after my appointment on Thursday, but I have a lot on my mind and thought it would be therapeutic to write it out. Well, hopefully it will be! I apologize ahead of time to my readers as my therapeutic measures might be boring or depressing, but hey...this journey is not always filled with smiles and successes; however, Jesus is with us at every turn, twist and bump and for that I am FOREVER grateful.
After my appointment, we were kind of on cloud 9. My new doctor is amazing and for the first time we have some real hope that wellness might not just be an 8 letter unattainable word in our English dictionary. :) We don't know specifics of what, when, where and how in regards to my treatment plan (hopefully, we will get those Thursday), but we do know that this will be a monstrous mountain to climb that will take every spec of energy, financial resources and faith to get to the top.
We have started our journey on the mountain and are about 1 meter up (not much progress, but when you look at in inches, it seems a lot better (Ha!)), which is what brings us to the title of my post. At our appointment, the doctor wanted me to get on a 4 day rotation diet. I only have about 10 to 12 foods, but we have known this is an important step to move towards for awhile. We have just ignored it because we knew it would be very difficult. Well, after talking to my new doctor, we knew it was time to start. So, yesterday (Saturday), we sat down and wrote out my tentative food schedule. This may seem simple and easy to others, but when we have the doctor's instructions, my short list of foods and also my dreaded low blood sugar issues, it is REALLY difficult.
My doctor wanted me to only choose 3 foods per day and eat them as much as I wanted during the hours I was awake. Well, I tried that and my body failed me. First, eating a food more than once in a period of 4 hours just doesn't work. I had allergic reactions to what I was trying to eat the second go around. It seems like my body either wants me to gap 12 hours (that is what I have found that works pretty well) or doesn't want me to eat it all. So, what I ended up trying was to only eat 3 times during the day so I wouldn't repeat any foods. Well, that was unsuccessful too. When you can only eat one food (ie. broccoli or just frozen blueberries), it doesn't matter how much you eat in one sitting, your blood sugar is going to drop in about an hour. No fun and very unpleasant!!!
Thankfully, I have a couple of dear friends, who have successfully made it onto a rotation diet with a limited selection and they were able to give me some guidance. We are going to change things up a bit as I am learning that one type of rotation diet doesn't always work for every person. Hmmm....sound familiar???!!! Just like one type of Lyme Disease treatment doesn't work for every patient. So, with the help of others, we are going to start over today and try something new.
One of my friends said with her experience, the body will not react to a food you eat twice as long as you eat it within a two hour window. So, if you eat it multiple times in two hours, it will help you keep your blood sugar level longer, intake more food and allow you to not "technically" be eating a food more than twice a day. Apparently, for most, the body doesn't recognize it as a repetitive food attempt if it's within that window. Also, by doing that, there is about only a one or two hour gap between meals which will help the low blood sugar issues. You get this small gap by eating 4 meals a day instead of 3. Now, we do realize that this will cause us to only be on a 3 day rotation diet, but you gotta do what ya gotta do to survive. It is our prayer that in the future, we will be able to add more foods so that we can rotate longer. So, a big thank you to my dear friends! Hopefully, this will give us a better success. It's not delicious in any way shape or form, but right now it's about health and survival not taste. :P
The second part to our uphill climb in the last couple of days is the emotional component. I think even with the little that we know about my future treatment plan, we are just plain overwhelmed. Brian and I were sitting on the couch hashing out what the future might look like and let's just say it was pretty mind boggling. We have so many factors that go into my upcoming treatment. Part of it has to do with financial resources as the future IV/medical treatment that won't be covered by insurance will cost an upwards of aprox. $30,000 (that is probably a really low estimate). For those of you who are reading this and are curious as to why it won't be covered by insurance, go to the link at the top of the page titled "About Lyme Disease". This will give you a better explanation. Like most people, we definitely don't have $30,000 just sitting around waiting to be used, so it is a big scary number to us.
Another issue that we are facing is just the practicality of how this will be done. Brian's schedule is ramping up in the next week and he is booked solid as far as auditing assignments until October. He won't have the ability to ask for a lot of days off. At the same time, Brian is trying to finish 3 self-paced college classes so that he can meet the CPA requirements of 36 accounting hours and at the same time study and sit for all 4 sections of the CPA exam. He has a goal to finish this by July for a number of reasons that pertain to his future career. When you add that to already what he has to carry which is taking care of me and everything to do with the house (cleaning, shopping, yard work etc.) and also the pressure of trying to get up to Phoenix for doctor's appointments and treatments, the word "overwhelmed" is probably an understatement. Plus, when I start IV therapy, it won't be safe or good for me to be alone all the time due to how unpredictable and allergically reactive I am, so that is a big stressor for him too. We don't know a lot of people down here because of the timing of when we moved to Arizona. From the beginning, I was too sick to attend church, so we haven't been able to meet or fellowship with other believers to have that support.
Finally, we are not sure what I should attempt or will be able to do physically or practically. Currently, right now, I work part-time tutoring students in South Korea in English over the phone. I LOVE my job. It's a perfect fit for me and I would not want to quit as these types of jobs are really hard to come by. However, I am not sure how this will all play out with trying to make trips to Phoenix and the grueling treatment that has the potential to make me so much sicker then I already am. Then, I have schooling to decide about. I am not sure how I will be able to work on my class load for my MA degree. For reasons that I won't explain, I have to be able to work part-time and go to school in order to attempt to afford treatment. We are stuck in this vicious cycle of no options. Ughhhh!!!! This is the part of our uphill climb where we feel like we are hamsters running in that little wheel and not getting anywhere. :P I say all of this not for sympathy or to whine, but more so that you can be praying for us as we try to navigate through all of these decisions. It's so tough on so many levels.
Well, it's 6:15am and I need to go try and eat something on day 2 attempt 2 of the rotation diet. :) I apologize for making this so long! We really would appreciate your prayers in the next couple of weeks as we try new things, begin treatment and have to start making all of these tough decisions. I have said over and over that our God is our provider and we believe that with all of our hearts. He will provide ALL of our needs. We are praying that God would guide and direct us down the correct paths and that through it all, He will be glorified. Ultimately, it is the Lord that will heal me and whatever avenue He uses to do that, we know that He will be with us along every meter of that mountain. Talk to you soon! I'll update after my appointment on Thursday! Blessings!
After my appointment, we were kind of on cloud 9. My new doctor is amazing and for the first time we have some real hope that wellness might not just be an 8 letter unattainable word in our English dictionary. :) We don't know specifics of what, when, where and how in regards to my treatment plan (hopefully, we will get those Thursday), but we do know that this will be a monstrous mountain to climb that will take every spec of energy, financial resources and faith to get to the top.
We have started our journey on the mountain and are about 1 meter up (not much progress, but when you look at in inches, it seems a lot better (Ha!)), which is what brings us to the title of my post. At our appointment, the doctor wanted me to get on a 4 day rotation diet. I only have about 10 to 12 foods, but we have known this is an important step to move towards for awhile. We have just ignored it because we knew it would be very difficult. Well, after talking to my new doctor, we knew it was time to start. So, yesterday (Saturday), we sat down and wrote out my tentative food schedule. This may seem simple and easy to others, but when we have the doctor's instructions, my short list of foods and also my dreaded low blood sugar issues, it is REALLY difficult.
My doctor wanted me to only choose 3 foods per day and eat them as much as I wanted during the hours I was awake. Well, I tried that and my body failed me. First, eating a food more than once in a period of 4 hours just doesn't work. I had allergic reactions to what I was trying to eat the second go around. It seems like my body either wants me to gap 12 hours (that is what I have found that works pretty well) or doesn't want me to eat it all. So, what I ended up trying was to only eat 3 times during the day so I wouldn't repeat any foods. Well, that was unsuccessful too. When you can only eat one food (ie. broccoli or just frozen blueberries), it doesn't matter how much you eat in one sitting, your blood sugar is going to drop in about an hour. No fun and very unpleasant!!!
Thankfully, I have a couple of dear friends, who have successfully made it onto a rotation diet with a limited selection and they were able to give me some guidance. We are going to change things up a bit as I am learning that one type of rotation diet doesn't always work for every person. Hmmm....sound familiar???!!! Just like one type of Lyme Disease treatment doesn't work for every patient. So, with the help of others, we are going to start over today and try something new.
One of my friends said with her experience, the body will not react to a food you eat twice as long as you eat it within a two hour window. So, if you eat it multiple times in two hours, it will help you keep your blood sugar level longer, intake more food and allow you to not "technically" be eating a food more than twice a day. Apparently, for most, the body doesn't recognize it as a repetitive food attempt if it's within that window. Also, by doing that, there is about only a one or two hour gap between meals which will help the low blood sugar issues. You get this small gap by eating 4 meals a day instead of 3. Now, we do realize that this will cause us to only be on a 3 day rotation diet, but you gotta do what ya gotta do to survive. It is our prayer that in the future, we will be able to add more foods so that we can rotate longer. So, a big thank you to my dear friends! Hopefully, this will give us a better success. It's not delicious in any way shape or form, but right now it's about health and survival not taste. :P
The second part to our uphill climb in the last couple of days is the emotional component. I think even with the little that we know about my future treatment plan, we are just plain overwhelmed. Brian and I were sitting on the couch hashing out what the future might look like and let's just say it was pretty mind boggling. We have so many factors that go into my upcoming treatment. Part of it has to do with financial resources as the future IV/medical treatment that won't be covered by insurance will cost an upwards of aprox. $30,000 (that is probably a really low estimate). For those of you who are reading this and are curious as to why it won't be covered by insurance, go to the link at the top of the page titled "About Lyme Disease". This will give you a better explanation. Like most people, we definitely don't have $30,000 just sitting around waiting to be used, so it is a big scary number to us.
Another issue that we are facing is just the practicality of how this will be done. Brian's schedule is ramping up in the next week and he is booked solid as far as auditing assignments until October. He won't have the ability to ask for a lot of days off. At the same time, Brian is trying to finish 3 self-paced college classes so that he can meet the CPA requirements of 36 accounting hours and at the same time study and sit for all 4 sections of the CPA exam. He has a goal to finish this by July for a number of reasons that pertain to his future career. When you add that to already what he has to carry which is taking care of me and everything to do with the house (cleaning, shopping, yard work etc.) and also the pressure of trying to get up to Phoenix for doctor's appointments and treatments, the word "overwhelmed" is probably an understatement. Plus, when I start IV therapy, it won't be safe or good for me to be alone all the time due to how unpredictable and allergically reactive I am, so that is a big stressor for him too. We don't know a lot of people down here because of the timing of when we moved to Arizona. From the beginning, I was too sick to attend church, so we haven't been able to meet or fellowship with other believers to have that support.
Finally, we are not sure what I should attempt or will be able to do physically or practically. Currently, right now, I work part-time tutoring students in South Korea in English over the phone. I LOVE my job. It's a perfect fit for me and I would not want to quit as these types of jobs are really hard to come by. However, I am not sure how this will all play out with trying to make trips to Phoenix and the grueling treatment that has the potential to make me so much sicker then I already am. Then, I have schooling to decide about. I am not sure how I will be able to work on my class load for my MA degree. For reasons that I won't explain, I have to be able to work part-time and go to school in order to attempt to afford treatment. We are stuck in this vicious cycle of no options. Ughhhh!!!! This is the part of our uphill climb where we feel like we are hamsters running in that little wheel and not getting anywhere. :P I say all of this not for sympathy or to whine, but more so that you can be praying for us as we try to navigate through all of these decisions. It's so tough on so many levels.
Well, it's 6:15am and I need to go try and eat something on day 2 attempt 2 of the rotation diet. :) I apologize for making this so long! We really would appreciate your prayers in the next couple of weeks as we try new things, begin treatment and have to start making all of these tough decisions. I have said over and over that our God is our provider and we believe that with all of our hearts. He will provide ALL of our needs. We are praying that God would guide and direct us down the correct paths and that through it all, He will be glorified. Ultimately, it is the Lord that will heal me and whatever avenue He uses to do that, we know that He will be with us along every meter of that mountain. Talk to you soon! I'll update after my appointment on Thursday! Blessings!
Wednesday, July 7, 2010
My appointment with my new doctor!! :)
Hello everyone! I wanted to make a post tonight because I am just so excited to share what God did today. I want to thank you for all of your encouragement and prayers. It meant so much to us. It has been a long couple of months as I have been off treatment since the end of April waiting for this appointment. I have gotten a lot sicker, so this appointment couldn't come at a better time.
It was an early morning as Phoenix is two hours away from us. So, at 6:20 we got into our car, prayed over our trip and left Tucson. We had a bit of an adventure trying to find a copy center as we had to make copies of my medical records. The reason why I mention this is because it's almost humorous. After we visited the last doctor that I went to, which was awhile ago, we accidentally left my medical records in the trunk of the car. This normally wouldn't be a big deal, but about five years ago, we spilled some gasoline in the trunk and we have never been able to get rid of the smell. So, after my medical records had sat in the trunk and baked in the Arizona heat for months, they stunk like we were at a gas station! We knew we were going to a clinic that works with people that have Multiple Chemical Sensitivities and also knew that some of the office staff had the same issues. So, we had to find a copy center in order to give them "non-smelling" paperwork. That cracks me up! When we first got married, we would have never imagined we would be doing something like this in a million years. I thought you would enjoy that small humorous story. :)
Back to my appointment...I arrived at the office and the staff was amazing. So caring, considerate and friendly. I did not react to the building at all. They created this office for people with MCS, so all of the materials in the building are chemical free, and they have a special air filtering system. This is the first office that I didn't react to. That in itself is a miracle!
We got to see the doctor right away as we were the first appointment. She was wonderful. If I had to describe her demeanor in two words I would say it was a "calm confidence". She worked years in one of the top ERs in the country as both a physician and an emergency surgeon. We can tell she has the personality to handle emergency situations, which is such a comfort to us as nothing with me ever seems to go "as planned". As we began to discuss my case, we were so impressed by her knowledge of how to work with Multiple Chemical Sensitivity patients. For the first time on this journey, we had a doctor who knew that we had to work within the parameters of what my body can handle and did not try to throw me into the "normal treatment protocol box". What a breath of fresh air!
She is so well-rounded when it comes to experience and knowledge. She has a western medicine background, but also has trained in holistic/homeopathic, bioenergetic and Chinese medicine (herbals/acupuncture). She has also studied Dr. Rea's techniques and is one of a few doctors in the United States that is able to implement his VERY successful methods of treating Multiple Chemical Sensitivities. So, it seems that we have the best of every world.
She did a number of tests in the office that did confirm to us what we already knew. However, it's always good to get the confirmation. She said my liver is very stressed and not detoxing the toxins like a normal person, which is causing my Multiple Chemical Sensitivities, the insomnia and a whole ton of other issues. She also said that my Vagus nerve appears to not be working correctly which is part of the autonomic nervous system. So, that is why I am having a lot of autonomic nervous system issues like I described in my last post. I also have a lot of other issues that we will be addressing like hormones, low blood sugar issues etc. She really treats the whole body instead of focusing on one particular issue. This is so important as when you have a chronic illness like myself, it effects every organ and system in your body.
So, the overall plan is to help stabilize my body and to also do some of the MCS treatments to enable me to tolerate more chemicals, drugs and food. I am not sure of everything involved as I will find out more on my phone appointment next Thursday. However, it was so nice to know that we weren't jumping into anything to fast.
As far as treating the Lyme goes, we were once again told that we were going to have to do IV therapy because of how much the bacteria has invaded my system. However, not until my body will be able to handle it (Pheww!!). We are not sure when that will be, but we think it will be at least two or three months, maybe longer. With her experience as an ER doctor/surgeon, she recommends to all her patients to get a PORT installed. This is a central line that is installed in the wall of your chest. She said that it is a lot easier to use and in her opinion safer than a PICC because there are less complications. That will be a scary step for us because it is a surgical procedure and with my allergies/sensitivities it will be challenging. However, at the same time, we serve a big God and know we will have His protection when the time comes to take this step. The treatment will be astronomically expensive (literally mind-boggling) as insurance most likely won't cover the treatment, but for now, since we aren't to that stage yet, we are trying not to think about it. We know God will provide as He always has in His timing.
She did put me on a 4 day rotation diet that will be pretty interesting. I eat about 2 or 3 foods per day multiple times a day and then I can't eat those foods again until 4 days later. For the last year, I have been only able to eat about 10 to 12 foods consistently, so I am already used to restrictions. However, it will still be an adjustment. She also said no milk products which believe it or not was something I was semi-tolerating. She wants me to be carb free as it seems like my body is turning carbohydrates into toxins. So, I will only be able to eat beef, chicken, turkey and egg whites for protein, and then cooked broccoli, carrots, canned peaches, applesauce and frozen blueberries for my veges and fruits. That literally is my list right now. Those are the only things I currently don't react to. Hopefully, in the future my list will expand! We are praying for that!! :)
So, that is our update! I will know a ton more after next Thursday's appointment (July 15th) as that is when she will discuss with us the game plan. My treatment is going to require us to make a large number of trips to Phoenix and with Brian's busy work schedule, we are not sure how that is going to work out as I am too sick to drive myself. However, once again, that will be another area to trust God with! Have you noticed a reoccurring theme?!! This is one big faith walk for us, but then again, there is nowhere we would rather be then walking the path that God has laid before us.
I will make sure to update you next Thursday! We are just so incredibly thankful that God guided us to her. She is an amazing physician, and we feel confident that she will be wise in handling my complicated case. Thank you again for all of your prayers! The encouragement we have received has been so comforting. It has been a rough couple of months, but we have seen the hand of God guiding every step of the way. Have a wonderful week, and we'll update soon!
It was an early morning as Phoenix is two hours away from us. So, at 6:20 we got into our car, prayed over our trip and left Tucson. We had a bit of an adventure trying to find a copy center as we had to make copies of my medical records. The reason why I mention this is because it's almost humorous. After we visited the last doctor that I went to, which was awhile ago, we accidentally left my medical records in the trunk of the car. This normally wouldn't be a big deal, but about five years ago, we spilled some gasoline in the trunk and we have never been able to get rid of the smell. So, after my medical records had sat in the trunk and baked in the Arizona heat for months, they stunk like we were at a gas station! We knew we were going to a clinic that works with people that have Multiple Chemical Sensitivities and also knew that some of the office staff had the same issues. So, we had to find a copy center in order to give them "non-smelling" paperwork. That cracks me up! When we first got married, we would have never imagined we would be doing something like this in a million years. I thought you would enjoy that small humorous story. :)
Back to my appointment...I arrived at the office and the staff was amazing. So caring, considerate and friendly. I did not react to the building at all. They created this office for people with MCS, so all of the materials in the building are chemical free, and they have a special air filtering system. This is the first office that I didn't react to. That in itself is a miracle!
We got to see the doctor right away as we were the first appointment. She was wonderful. If I had to describe her demeanor in two words I would say it was a "calm confidence". She worked years in one of the top ERs in the country as both a physician and an emergency surgeon. We can tell she has the personality to handle emergency situations, which is such a comfort to us as nothing with me ever seems to go "as planned". As we began to discuss my case, we were so impressed by her knowledge of how to work with Multiple Chemical Sensitivity patients. For the first time on this journey, we had a doctor who knew that we had to work within the parameters of what my body can handle and did not try to throw me into the "normal treatment protocol box". What a breath of fresh air!
She is so well-rounded when it comes to experience and knowledge. She has a western medicine background, but also has trained in holistic/homeopathic, bioenergetic and Chinese medicine (herbals/acupuncture). She has also studied Dr. Rea's techniques and is one of a few doctors in the United States that is able to implement his VERY successful methods of treating Multiple Chemical Sensitivities. So, it seems that we have the best of every world.
She did a number of tests in the office that did confirm to us what we already knew. However, it's always good to get the confirmation. She said my liver is very stressed and not detoxing the toxins like a normal person, which is causing my Multiple Chemical Sensitivities, the insomnia and a whole ton of other issues. She also said that my Vagus nerve appears to not be working correctly which is part of the autonomic nervous system. So, that is why I am having a lot of autonomic nervous system issues like I described in my last post. I also have a lot of other issues that we will be addressing like hormones, low blood sugar issues etc. She really treats the whole body instead of focusing on one particular issue. This is so important as when you have a chronic illness like myself, it effects every organ and system in your body.
So, the overall plan is to help stabilize my body and to also do some of the MCS treatments to enable me to tolerate more chemicals, drugs and food. I am not sure of everything involved as I will find out more on my phone appointment next Thursday. However, it was so nice to know that we weren't jumping into anything to fast.
As far as treating the Lyme goes, we were once again told that we were going to have to do IV therapy because of how much the bacteria has invaded my system. However, not until my body will be able to handle it (Pheww!!). We are not sure when that will be, but we think it will be at least two or three months, maybe longer. With her experience as an ER doctor/surgeon, she recommends to all her patients to get a PORT installed. This is a central line that is installed in the wall of your chest. She said that it is a lot easier to use and in her opinion safer than a PICC because there are less complications. That will be a scary step for us because it is a surgical procedure and with my allergies/sensitivities it will be challenging. However, at the same time, we serve a big God and know we will have His protection when the time comes to take this step. The treatment will be astronomically expensive (literally mind-boggling) as insurance most likely won't cover the treatment, but for now, since we aren't to that stage yet, we are trying not to think about it. We know God will provide as He always has in His timing.
She did put me on a 4 day rotation diet that will be pretty interesting. I eat about 2 or 3 foods per day multiple times a day and then I can't eat those foods again until 4 days later. For the last year, I have been only able to eat about 10 to 12 foods consistently, so I am already used to restrictions. However, it will still be an adjustment. She also said no milk products which believe it or not was something I was semi-tolerating. She wants me to be carb free as it seems like my body is turning carbohydrates into toxins. So, I will only be able to eat beef, chicken, turkey and egg whites for protein, and then cooked broccoli, carrots, canned peaches, applesauce and frozen blueberries for my veges and fruits. That literally is my list right now. Those are the only things I currently don't react to. Hopefully, in the future my list will expand! We are praying for that!! :)
So, that is our update! I will know a ton more after next Thursday's appointment (July 15th) as that is when she will discuss with us the game plan. My treatment is going to require us to make a large number of trips to Phoenix and with Brian's busy work schedule, we are not sure how that is going to work out as I am too sick to drive myself. However, once again, that will be another area to trust God with! Have you noticed a reoccurring theme?!! This is one big faith walk for us, but then again, there is nowhere we would rather be then walking the path that God has laid before us.
I will make sure to update you next Thursday! We are just so incredibly thankful that God guided us to her. She is an amazing physician, and we feel confident that she will be wise in handling my complicated case. Thank you again for all of your prayers! The encouragement we have received has been so comforting. It has been a rough couple of months, but we have seen the hand of God guiding every step of the way. Have a wonderful week, and we'll update soon!
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