And Then...

While I wasn't planning on going this long between updates on my Whole30 adventure a little medical issue kind of got me sidetracked. I can't really say you've missed much though. Here's what I can say: Today is day 24 and the cravings are still there just like they were on day 1. I haven't totally adjusted to my coffee without sugar. Eggs everyday isn't completely terrible. Sugar is in just about everything. 30 days isn't going to be long enough for me. 

In the 3 weeks and a few days since starting this journey I can tell that my skin has continued to improve and I have lost some more weight. Both of those things had started earlier this year with the elimination of gluten and a reduction on dairy and sugar. Going the extra mile has just continued those benefits. However, increased energy, reduction in pain, improved brain function or just a general reduction in the symptoms due to my illness hasn't happened YET. I emphasize yet because I have come to face the reality of just how off my diet has been and for how long and the bottom line is it's going to take longer than 30 days for my body to adjust. My doctor is also doing the Whole30 and is a few days behind me. He is always excited to hear how its going. While he was beyond impressed that I had been successful this long, he was a little disappointed that I had not had more noticeable improvements. I told him the honest truth about my life long sugar addiction and he let me know that I was very fortunate that I had not become addicted to drugs or alcohol as it is fairly common for people with such a love of sugar to become addicted to other things. I would say he agreed with my assessment and it will take me a little longer but good things are happening even if I don't see the changes yet.  

While I consider myself successful to this point the creators of this program would say differently. Tough love is certainly a tactic they use. Here is where I have "failed" in these 24 days. The first 2 days I took my digestive enzyme like normal without realizing that is contained milk. Towards the end of the 3rd week I drank about half a bottle of a chia seed drink that I didn't realize had agave in it despite reading the ingredients a time or 2. Both of those things were accidental but the program says regardless of the reason they believe you should start over. For my own sanity I was not prepared to go back to day 1. The other times I made a conscious decision about something I ate that they would consider non compliant.  Both items were fine ingredient wise but not in keeping with the general spirit of the program. I ate about 5 french fries and a few handfuls of Terra Chips. I actually planned on eating a whole order of fries but immediately knew I it was a bad decision and that I would regret it. The fact I stopped eating them is a success in my book. The chips I initially ate due to poor planning and their availability. I can see why the plan considers them food without breaks. It would be very easy to sit down and over do it. They both helped fulfill some kind of craving. I am not going to beat my self up over those decisions and am still considering my self a success up to this point. 

I will say that this process is definitely hard. Certainly harder for some than it is for others. Here is where I have struggled  and know that I can improve in the future. First and foremost is the sad shape of my diet up until this point. These are significant changes to make. I am telling you, sugar is in everything. So when you think its not a big deal to primarily eat meat and vegetables try finding compliant deli meat or bacon or something to dip your vegetables in that does not contain sugar. Second is the fact that I don't feel good and lack energy to get through the day everyday. My lack of cooking skills and planning goes hand in hand with #2. If I felt better and had more energy things like cooking, cleaning and planning would not seem like such overwhelming tasks. Lastly having kids and a husband who aren't on the same plan. (at least not yet) makes it a little more of challenge. I will say my family has been very supportive of me though. I realize I am not eating enough vegetables or fat at every meal. I also had a week of not eating enough due to my little medical problem and I haven't quite gotten back on track yet. 

I have not made a decision on what will happen on day 31. I can choose to follow the plans reintroduction of foods and see which ones I can tolerate on some level, I can continue as I am, or I can quit and resume the diet I had. I really don't consider quitting an option so I am left with the first two. My gut feeling is I will reintroduce somethings that I know will be helpful in me maintaining a much better diet for the long term. I already know I am better without the gluten, most dairy, and added sugar. These final 6 days could be a game changer though and maybe I will take on another 30 days. I know everyday beyond the initial 30 that I can do this will only be a benefit to me. I will certainly let you know what I decide.

I'm sorry this post is a little long already but I wanted to give an update on what else has been going on health wise for those that are interested. A little more than a month ago I started IV ozone as my latest treatment for Lyme and its associated problems. Treatment was once a week although I did have a week off since my doctor was out of town. After the first treatment I was definitely more tired. After the second treatment I was not only more tired, but had the return of some awful nerve pain. I had random bouts of burning pain that appear almost any where on my body. We had some rainy weather during this time and on a few occasions when the rain was just beginning to fall almost like a heavy mist any exposed part of my body would sting with every drop of water that touched it. I had not experienced this since before I was diagnosed. While it was frustrating and uncomfortable I took it as a sign that the ozone was killing off some bugs and that it was just part of the wonderful herxheimer (herx) reaction so often associated with Lyme. The random burning and increased fatigue have unfortunately decided to hang around for a while. 

The third treatment brought about some very unwelcome symptoms that temporarily turned my world upside down and left me wondering- "What the hell just happened?". And as usual I am not sure we have a definitive answer to that question. My treatment went as usual that morning and I headed home. I was tired as expected and knew my busy evening with back to school night and softball practice may require a little extra push. About 4 p.m., I was sitting at my desk, when head to toe pain washed over me like a wave. I was suddenly hit with some of the most severe body aches I had every had in my life. Every move I made hurt and my skin felt bruised all over, I was suddenly dreading the night ahead of me but figured it was important for me to go and it would be a distraction to what must be a severe die off from my treatment early that day. While I managed to get through back to school night it was not the distraction I hoped it would be and I felt worse with each passing moment. I finally made it home where I took my alka seltzer gold that usually helps reduce my pain and decided to detox with an epsom salt bath. As the bath water ran, I took my temperature and it was 99.2. While most people wouldn't consider that a fever, for someone who runs a degree or two below normal this could be the start of a low grade fever. I took my bath and then climbed into bed. It did not take long for my heart to become very unhappy. The rate seemed high but more concerning was the feeling that it was skipping beats or throwing PVC's every minute or two sometimes more. I let my husband know he needed to come straight home from softball practice because something was wrong and I didn't feel good. ( I was also having severe left sided ovarian pain which is normal for me but this time was more constant and intense) Was this all related to an ovarian cyst? Did I pick up the nasty virus going around the kids school? Who knew but I was miserable. I was not new to my heart acting up but it doesn't make the episode any less scary. I let this continue for a couple hours before giving in and calling the doctors office. The on call answered and said while they had being seeing patients with body aches and fevers come into the office the heart thing was concerning and it was best I go to the ER.

Fortunately we have a hospital with in about 5 min of our house so I was comfortable enough to take myself and let hubby and kids stay at home  since it was about 10:45 at night and they didn't need to be around all those germs. The whole way there I prayed that they not only figured out what was wrong with me but that I didn't get laughed at or scolded about my Lyme diagnosis and my current choice of treatment. You may think its crazy for me to think that would happen but it already has. A Lyme patient has the constant debate when seeing a new medical professional on weather or not to bring up Lyme fear of what they might say. It was also important they found something. I have more been to the ER more than I would like and have had them find nothing which is also typical for a Lyme patient. Or they find something wrong but it doesn't appear life threatening and they don't know what is causing it so you are sent home with no answers. The last thing my body needed was anxiety over going to the hospital so I just prayed. I got the ER and it was packed. People wrapped in blankets with masks covering their faces made the germ a phobe in me come out and I wanted to run the other way. I checked in though and tried to make myself comfortable for the long wait that was ahead of me. 

I made it to triage fairly quickly where all the typical questions are asked and your vitals are taken. The nurse was doing everything with a doctor sitting in to monitor. Temperature was 99.2 so no "fever" but my heart rate was a shocking 130. Based on symptoms and history they were going to run multiple labs and tests. This included a pelvic ultrasound for ovarian pain and blood cultures because this could be the beginning of sepsis since I had been using my port. They also threw in a chest x-ray for good measure. Tests and labs were all done fairly quickly but I had to wait for a room as I needed to be seen in the main part of the ER. I was finally called back at about 3 am. The attending doc went over my history again and agreed with the possibility of sepsis. Another culture was taken this time directly from my port and an abdominal CT was ordered. My heart rate was still running between 120 and 130 and my temperature was now 102. I was blessed with a doc who didn't laugh at my Lyme diagnosis, who didn't really know about ozone as a treatment but was going to research it and was familiar with a herx reaction. Ultimately, they found an ovarian cyst and something on my liver but nothing urgent they needed to deal with. They did give me a dose of IV antibiotics just in case and stated blood cultures would take 24 to 48 hrs to grow something. Since my heart rate had come down to 105 they would let me know go and call me if the cultures were positive to have me admitted. I was released about 6:30 that morning. 

While the pain was somewhat better I was now extremely nauseous and running on no sleep. I came home and went to bed. The waiting for blood cultures brought on some anxiety. I wanted someone to call either way so I knew things had not been overlooked. I decided to call the next morning at the 24 hr mark and was told we will call you if its positive, The phone never rang. I called again the next day and explained I just needed confirmation things were ok (my doc had called to check on me and said he definitely suspected sepsis due to the high fever). I was told to call back on Monday when I could talk to the lab and they would help me out. 

Just yesterday I was telling this little tale to my acupuncturist and when I got to this part of the story I said "and then" and he stopped me. He said "And then? Really Jessica there is an and then?". By now he was used to my crazy stories and we just laugh about it. So,,,I called Monday only to be met with resistance. We can't tell you anything. You have to go to medical records. The ER was wrong. I couldn't even fully get my question out before it was apparent I had to go get copies of my medical records for my 8 hr stay to find anything out. The process wasn't terrible bad but the results were a little shocking and once again left me with the thought that the medical community is in trouble and certainly leaves something to be desired. It is imperative that you are your own advocate and must not take everything you are told at face value. 

As I flipped through the 40+ pages I was handed I found a variety of information some of which I had never heard about myself. Blood tests indicated high CRP, WBC and Neutrophils with low Lymphocytes. Urinalysis showed high ketones which most likely were from my new eating habits and the fact my body was burning fat instead of sugar. The urine culture was contaminated and they wanted a repeat which of course never happened. The 3 blood cultures all indicated no growth but they were only preliminary reports and 2 of them were given before the 24 hr mark. While my ovarian pain was on the left side they found a cyst on the right. I can only assume the pain is related to the varicose vein in my pelvis we discovered a year or so ago. Chest x-ray was normal. Now on to the CT. It is noted that I have a probable hepatic hemangioma on my liver. Follow up is needed to confirm this but there is not much concern. Up to this point everything I read they had mentioned to me with the exception of the blood cultures. 

Now I begin reading things I have never been told about myself and most of which I have never heard of. This is where I am just special like that. Random weird and sometimes rare abnormalities that may or may not be something of significance. But in any case it would be nice if someone mentioned it. If it's important enough to note in the medical records could it be important enough to mention to the patient?  The list includes a small umbilical hernia, a sclerotic focus on my left iliac bone, extrarenal pelvis bilaterally, a cyst on my lower right kidney, slightly enlarged spleen, and multilevel bulging discs causing a narrowing of my spinal canal and a diagnosis of degenerative disc disease. Reading these things caused mild a panic and serious frustration. Trying to weed through what may be important and what was not was something I had to do until I could see my doctor and confirm. This is where some knowledge can go a long way. I like to feel some what educated when discussing things with the doctor. I don't want everything to be over my head and I don't want something to be missed. After all people in medical community are just that, people. Prone to mistakes like everyone else. The issue is their mistakes can be life or death. (I almost terminated the life of my youngest daughter due to someones mistake. A story I may have shared years ago but will share again another day) After consulting my chiropractor and doctor it was decided most of these things were of no concern and just extra information. I do have to follow up with an ultrasound of my liver.

As far as my my blood cultures and treatment go...my doctor agreed there needs to be a final report on my blood cultures and is in the process of obtaining those. He also believes that after almost 5 years of having my port in there is most likely bacteria in the end of my line and each time we use it we would be flushing that in to my blood stream causing what could lead to sepsis. It has to come out. So tomorrow I go and have "Donald"removed. Ozone has been suspended for the time being and we will reevaluate once the port is out. I am nervous about doing IV treatment with out it but will do what ever is deemed necessary. The Interventional Radiologist office will be sending the tip of the catheter in to be cultured for bacteria once it is removed. I am concerned about the possibility of bacteria being dumped in to my system during the removal and have left a message requesting antibiotics just in case. 

I am hoping to get back on here and check in in a few days to let you know how things went and if I have any new information. I certainly would appreciate extra prayers and good thoughts tomorrow. Thank you to everyone who has followed my  journey over the years. It is strange to put this information out to the world sometimes, but it is therapeutic for me to get it out of my head and some of you really want to know. So again thanks for your support. 

Random Story

I really feel led to start off this post by sharing a story. There is always a chance I have shared this before but it was placed on my heart to share today even though it doesn't seem to relate to anything else I have to say. I have learned to not ignore those feelings. Someone needs to hear this. Here it goes.

About 6 1/2 yrs ago I found out I was pregnant with my second daughter. My husband and I had already decided during my first pregnancy that we would never terminate a pregnancy even if test results said our baby had significant health problems. We had been blessed with one healthy daughter already and although my first pregnancy wasn't a walk in the park I didn't have any significant issues. I wasn't very far along in my second pregnancy when I began having some severe pain. It was very similar to pain I had before from an ovarian cyst but of course being pregnant I was a little concerned. I called my OB whom had delivered my first baby and whom I trusted completely.  She said I should go to the hospital for an ultrasound just to make sure everything was ok. We went down to the hospital and the results came back that I was pregnant but I was definitely not as far along as I should be. There was some concern of an ectopic pregnancy and I needed to come back in a week or so. The pain continued on and off and I went back for my followup. We were blessed with an amazing tech this time. Although he couldn't confirm anything, he told us that things had changed and appeared to moving in the right direction. I remember it was a Friday and he said he worked all weekend and if I needed to come back everyday for reassurance he would be happy to help us. Little did we know what a blessing this man truly was going to be for us. We were definitely relieved. The afternoon of the following Monday, my OB calls. She tells me she just received the ultrasound results and I did not have a viable pregnancy. She needed me to come to hospital to terminate the pregnancy. Of course my husband and I were devastated and we just couldn't understand why this was so different from what we had heard a few days earlier. We got settled in the hospital and while we were waiting for my doctor we explained to the nurse what we had been told and how this all didn't make sense. She was kind enough to pull my ultrasound results and told us the notes indicated exactly what we had said. She told my doctor as soon as she arrived about our concerns. When my doctor finally came back she apologized and said she had been sent the wrong results. Everything looked fine on the new ultrasound. We were free to leave. Today we have a healthy beautiful 6 yr old little girl. One persons mistake almost cost us my precious daughters life. Like I said at the beginning, I'm not really sure how this ties into everything else I'm sharing but someone out there needed to hear this. Please don't sit back and rely on someone else for health and well being. 

Well with that out of the way I did want to give you a little update on my new "job". The first few weeks are always a little crazy and this is no different. I am signing a contract with myself outlining everything this will entail. The basic premise is I can work as much or as little I want. My pay is based on how much I work. I am kind of on call 24/7 but my schedule is really up to me. I have a a fairly good idea of what my daily assignments will be and what special projects I might be tasked with. I definitely have lots of meetings to attend (i.e. doctors appts). In fact I have had a few of those meetings this week. I saw the acupuncturist yesterday and had an ultrasound of my thyroid to day. I will be seeing the endocrinologist on the 25th to go talk about all of the hormone issues, adrenal fatigue, and thyroid problems I may be facing. I am hoping to hear my ultrasound results before then because I am relatively sure I will be told I have a least one if not multiple tumors growing and they need to do biopsy. If that is the case, it will be the third time I am facing the possibility of thyroid cancer. I guess I will know if a couple of weeks for sure. 

My first real assignment is to nail down a treatment protocol and schedule. As I have said many times, with this disease there is no one treatment protocol that works for everybody. Each persons case is unique, each doctor out there has a little bit of a different approach, and you really need to listen to your body and your heart to determine what is right for you. Although I don't know 100% what my treatment will hold I can tell you some basics. I am really leaning to toward options that focus on restoring my bodies balance and ability to heal itself. Things like what Hansa offers, bowenwork therapy, acupuncture, zyto, and Synchronicity Wave System to name a few. Diet, exercise, enough rest, detox and a positive attitude are also a must. I am on antibiotics right now but  I am not sure for how long. I have a lot to sort our and get straight before I make any big decisions.  Organization in this job will be key. 

I have a lot more to share with you and in a few days I hope to have an updated current treatment protocol, some starting point statistics, maybe even pics, etc...I definitely need to share what I learned at acupuncture a few days ago and the challenge he gave me for the week. Although this post is kind of all over the place and not what I had planned for it to be, I knew I could not ignore that voice that said you need to share your story. I'm praying that what I said may be a blessing to someone. I look forward to getting back on track and sharing some more with you in a few days. God Bless.

New Job

I've got some very exciting news to share. You can probably guess from the title, I have a new job. It has great benefits and I start tomorrow. I'll be working at Mind, Body, Spirit and the biggest part of my job will be working on me. Okay, let me explain. I have decided to treat taking care of myself as a real job. If I do good at it the pay and benefits will be better than any job I have ever had. Let me share how this whole thing came about. 

For the past 2 and 1/2 yrs of my life, I have been trying to regain my health that really I had spent almost a lifetime slowly losing. I have tried traditional medicine, alternative medicine, and all sorts of things in between.  I have had ups and downs, twists and turns, that I never could have expected. I have tried to come to terms with the fact that I will always be fighting this. Even the thought of a lifetime fight against illness, makes me tired. Because of this whole ordeal I have begun to learn a lot about health, fitness, alternative medicine, etc...especially over the past year. The more I learn the more I am amazed by the human body and how it was designed. I truly believe that no doctor, medication, or procedure can cure me. All of those things can only aid in restoring my bodies balance and function allowing it to take care of itself. Our body truly is a miracle, and God designed it to heal itself. 

A couple of weeks ago I decided to join some friends on a mission to eat clean for 30 days. Eating clean is kind of a "buzz" phrase right now and means a little something different to everyone. In any case, having someone to be accountable to besides my husband has been a good thing for me. Although my family still has a long way to go, we have definitely made some steps in the right direction. Shortly after we began this mission I started back on antibiotics. I am currently on 2 out of the 3 that my doctor wants me to take and I have felt horrible.  I knew I needed to really focus on detoxing and have made an extra effort to use the sauna, drink water, eat good. I even did some electro lymphatic therapy and got to see my acupuncturist after a long break over the summer. While I was hoping these things would make me feel great they didn't. It has been a rough week. In fact my excitement and motivation over starting this new job this morning was interrupted by left sided chest pain and shortness of the breath that was all too familiar. I prayed that I would know if and when I needed to call 911 but deep down I had been here before and knew there was nothing they would find or be able to do for me. That however has not deterred from my goal and in fact has made me realize even more just how much I need it. 

I have been seeing lots of great pages on Facebook dedicated to health and fitness. Although many of them seek to motivate you, I have been allowing them to make me depressed. I see these amazingly fit women, talk about doing it all and I think back to when I was even a fraction of how in shape they are and I just get sad. My self confidence is in the trash, I weigh more than I ever have, I feel horrible.  How nice for them to go run and lift weights and spin their butts off. They work hard for their fitness but that isn't even an option for me. It didn't take long for me to realize that this entire time, I have been standing in my own way. When it was hard to look at my acupuncturist yesterday and answer his questions honestly about what I had been doing I realized I had a problem. Who was I?  I had become the queen of excuses. I certainly wasn't acting like the person I want to be. I began to think back to what I had accomplished in my life. Admitting that I had unknowingly been sick for so long yet I managed to: survive a full time college load while working, getting my EMT certification, working for the US Forest Service including passing their fire academy and going through fire school at Camp Pendleton, having two children while continue to work full time, doing so well in class that the CA State Fire Marshals office offered me a job, walking every step of the Breast Cancer 3 Day (about 60 miles)...I knew I had to not only take pride in my accomplishments but quit making excuses for why I couldn't achieve the health that I wanted.

As much as I considered trying to be one of those do it all women that had a Facebook page and website dedicated to health and fitness I decided that it was not the time. Believe me, going through this experience has made me consider a career in holistic type health or fitness of some sort but I know I just need to focus on the task of getting myself well. If that leads to something down the road that would be great. I have also come to realize that I do have gifts of compassion and encouragement and that I hope this "job" will allow me to use those to the best of my ability. I have decided to track this whole experience here in my blog. I found that being accountable to other people will help me stay on track and I am hoping someone, can benefit from what I share. My plan is to be honest, Including before and after pictures, my true weight, basically the good, the bad and the ugly. This isn't just about physical health though. I definitely am starting to see the mind body spirit connection. Negative thoughts can affect you physically and I plan on working on my total health. That is the only way to get better. 

So here it goes. A new phase, a new challenge. No more excuses!

Return to Hansa

So the return to Hansa has begun. What an incredibly exhausting day it has been. I could not be more impressed with how well my girls behaved today. I even got a compliment from a passenger on our first flight for their behavior. What a great feeling as a parent. I made sure my girls knew how much I appreciated that. I wish I could say that today was stress free and easy but would fun would it be if everything went off without a hitch. Getting to see some of my favoritest people from last time made the whole day worth it.

Here is a quick run down of our crazy day. San Diego-Los Angeles-Houston-Wichita. We left our house by 5:30 to get to the San Diego airport for a 7:30 flight to LA. My husband offered to find a Starbucks for my daily coffee fix but I said no, I'll grab one at the airport. Well the commuter terminal has almost nothing in it and I figured no biggie I'll grab one in LAX. Of course by the time we landed and all, we didn't have as much time as I thought. Not knowing my way around I just wanted to get to our gate and go from there. Found our gate, almost time to start boarding and there is nothing really around. Our flight ended up being late and I could have found food and coffee but no one communicated what was going on. Let me say that our United plane from LA to Houston  was great. Free headphones if needed and tvs at every seat with free games, movies(good ones too), tv shows, music, etc...So for that United is awesome. However customer service at the airport is awful. Like I said, a late and oversold flight with no info as to what was going on. We of course are late landing. We get off the plane and I confirm our gate for our connecting flight. Totally different terminal, meaning you have to take a tram since the Houston airport is so big. I have less than 30 minutes to take off and all the lady says if we don't stop at all we should make it. No offers to help us by giving us a ride on one of the million little luggage carts cruising around. Me and both girls are running through the airport with all of our stuff only to get to our gate and find out they are behind. It was like a scene from Home Alone. We landed safely though which is the most important part. Although I am still looking for my mocha.

It feels good to be back only I wish we were staying for longer than 3 days. I am excited to see my progress and to get some more healing going but I am way more excited to hear what they say about my girls tomorrow. The anticipation is almost too much to handle. I have been having some symptoms return over the last two weeks so the timing couldn't be better. I realized the other day I screwed up though, by relying solely on my brain, and I stopped all of my remedies like two weeks earlier than I should have. I am wondering if that is why I am having a little flare up or relapse or whatever. By the time I caught the mistake it was too late to start everything back up so I will talk with the doctor and have all of my remedies retested to see where I stand on them. Part of my wonders if 3 days is really enough but I believe we should be able to accomplish a lot. The only thing I know right now is that Jenna, who is 8, are both supposed to have the CRT test in the morning. Brooke, my 5 year old won't. Just to refresh your mind, the CRT is the temperature test where they take your temperature at 100-200 different points (all above the waist) on the body and then subject you to cooler temperatures for 10 minutes then retake the temperature on all the same points. How your body responds to the cooler temperatures gives and indication as to what is malfunctioning in your body and your overall inflammation and vitality. Last time, my inflammation was high and my body was functioning at like 40%. Can't wait to see the results this time.

Well I guess that is enough and I should really get some sleep. You know I will be filling you in daily about our trip. Your comments and questions are always welcome. Thanks to all of my family and friends for their wonderful support. By tomorrow at this time, I should have an answer to my most burning question...Do my daughters have Lyme also? It is comforting to know though how I will handle it. I believe we can get their health on track and that they won't have to suffer and go through all of medications and everything I did. We will get their bodies to deal with what ever they are facing the way God designed them too. Big couple of days ahead. Here we go...

Beam Me Up Doc

The the last few weeks have been a little crazy but I guess with me that is nothing new. There has been a lot going on with the kids and certainly a lot going on with me. I have taken a few rides on the "emotional" roller coaster. For some strange reason I still don't like that ride much. I have gone from happy to sad, frustrated to at peace, hopeful to hopeless. You get the picture. I should have expected some turmoil for the simple fact that we went to church. You don't need all of the details but like a lot of people it is easy to get in the habit of skipping church. I don't feel good, my husbands working weekends so it's hard for me to take the girls by myself, my daughter has a softball game and a million other reasons. My husband and I both knew we wanted to get back to church. So just last weekend we went. Not only once but twice. Our daughter sang for school at Saturday night church and we went to our church on Sunday morning. God welcomed us back with open arms and two great sermons. God really spoke to me and I was just kind of filled with peace. That should have been my warning, it was like the calm before the storm. The devil had to come in and start messing things up. So this past week has been especially tough. As I sit here tonight though, I am doing okay. Still working on trusting God completely and not stressing out or worrying about anything that we are facing. I just need to take it a moment at a time and know God has a plan.

So let me tell you about what has gone on treatment wise and where that is going. That of course will lead into the money part of things. Yesterday I completed day number 30 of my IV Rifampin. Too my surprise that is all I am going to take of it. Even more surprising is that I have mixed emotions about only doing one month. We never did find a cheaper source for that medication so I am excited about not having to spend another $1400+ however that doesn't mean my treatment got any cheaper. I don't know 100% why the doctor had me stop after only one month when we were really planning on 2 if not 4 months of it initially. I did feel like there was some minor improvement although it was hard to describe exactly what was better. I definitely had some returning symptoms and some new ones. The headaches that had started continued and I have had a nasty tension headache almost everyday for the past month. I also developed bad heartburn. I think the doctor was hoping for some more improvements. He seemed to key in on brain issues. "How is your brain fog and concentration? Any better?" Well I left my IV antibiotics at home twice when I went to the doctor, and not only did I go the wrong way to the doctors, I also went the wrong way to take the kids to school. That last one is a big one since the kids school is like two blocks away and on the same street we live on. I would say um no improvement in the brain area. Due to that and the doctors excitement over some new treatment he said stop the IV and lets have you try this light therapy. This sounded good to me. The only down side is the cost. At a $150 bucks a treatment, twice a week for a total of 12 treatments that puts us around $1800. Of course this wouldn't be an option if it weren't for my great friends and family and the fundraisers that have been going to help us.

As I said, yesterday I finished day number 30 of that IV med and today I started light therapy. Let me just tell you that if anyone had walked in during my treatment, I don't have any doubt in my mind that they would have called the authorities and tried to convince them that I needed to go to the hospital and be put on a 72 hour hold for a pysch evaluation. Just imagine, you walk into a room, and see me laying back with about 12 glass vials (very much like the little perfume sample bottles) taped to my stomach and I am holding what looks like a grocery store scanner or radar gun to my forehead. I am not lying to you. I almost wish I had a picture. So either I am nuts or I am trying to contact the mother ship, which I guess would also make me nuts. Beam me up doc! Maybe the aliens can fix me. All I can say is I had a good laugh at myself during all this. I'm thinking how a few years ago I would have run from a doctor or person trying to get me to do something like this. But God took the time to prepare me for the journey I was about to embark on and now I not only put radar guns on my forehead but I am even considering acupuncture. Anyone that knows me well can tell you that me and acupuncture would be a true miracle but I will save that discussion for another day. In any case, this treatment takes me a little over an hour because there are 10 points on the body you use this light and you do it in two rounds for different amounts of time. I have heard some good things about it so lets just pray that it works. I will do the treatment myself and do about 6 of them at which point I will take a month off before I would consider doing the other 6. I have started to feel a little worse in the last few days but today I really felt miserable. Tired, headache, lots of pain...it is always hard to tell for sure what is going so whether the treatment stirred things up I don't know for sure. That is my thought though. I guess I will know more on Monday when I go for round two.

This leads into my other treatment plans. After much deliberations, prayer, discussion, etc., I am planning on going to the Hansa Center in Kansas and have made my reservations. I had so much to consider when making this decision but here is what it came down to. First off this place has just been on my heart since I read about it. The more I learn the more I like it. Now they had an anniversary deal for a flat fee that was a couple thousand dollars cheaper than it is normally to go for two weeks. Of course that got my attention. After my fundraiser and some other help it looked like I may be able to consider going. I talked with the center again and wanted to confirm that they had no payment plans. That is when they told me that they do work through Care Credit and have a deal with 6 months no interest financing. I was beyond excited. So I went home and applied immediately and received instant approval for about half of what I needed to go. In my mind it was a sign that I had to go. Unfortunately my family didn't necessarily see it that way and we had some intense and emotional discussions on the issue. When all was said and done though I booked my appointment for January 2 through 13. If all goes as planned, I will be spending the first two weeks of 2012 in Wichita, Kansas hopefully getting my health back. The only thing that would make it better would be to have my family with me. Being away from my husband and kids for two weeks is going to be really tough. But I hope to come back so much closer to being the mom and the wife that I desire to be. What a way to start the new year. I am excited beyond belief. There is always a chance that I won't end up going but I am going to do everything I can to make sure I get to keep this opportunity. The last step is booking my flight. My hotel is reserved already. I have been checking flights and they are reasonable right now. I just need to confirm what refund or cancellation policies are. It looks like I would be flying Frontier which I have heard good reviews on. The cheapest flight so far, with tax and fees and all is about $300 round trip. I just need to know that my money is not totally lost if I have to cancel my trip. That deal was through Priceline so I have a little more research to do. I don't want to wait to the last minute either. I am flying out on New Years Day so I am hoping that keeps the price a little lower.

That brings me to the money. Oh how I wish money was never an issue. I am working on not making it one but right now it is still a dark cloud looming overhead. I think the issue is more with family than with me. I have really begun to feel a peace that God is taking care of it. However, the devil seems to be going after my family and they are just not at the same place I am. Because we are in this together their concern, worry, and opinion play a big part in how I proceed. This is where some of the concern with Kansas came in. If I go, and it doesn't work, then will I have just spent all of our money and have no money left for treatment? I see their point but I am trusting God on this and I feel like this is what I need to be doing. Of course add in things like Christmas, vehicle registrations, vehicle maintenance, etc...and it is easy to go into a tailspin of worrying and thinking the worst. I have continued to see God bless us though and have also felt like we are blessed so much more that we realize sometimes. It is easy to say that we don't have money to spare for others but the reality is we do. If I have money for a Starbucks even once, or a new jacket for my kids, or for cable or a cell phone I have money for others. The message we got from church had so much to do with this topic. If we look at where we are spending our time and our money, we will get a good picture of what is important to us. It seems the more we focus on others and help those in need the more we are taken care of. I am so on board. I am just praying God reveals this as clearly to my family. I am not ready to panic yet. God has our back. I am excited to see how He works things out.

I could go on but at this point I will be lucky if anyone read this all the way to the end. Thank you again for keeping on my crazy and wild journey through life with Lyme. I will try to update a little more often so my posts aren't so long. At least it may be good enough to put you to sleep right?

An Exciting Disappointment

I have a lot to update you on but I am going to do it a little backwards. Some amazing friends put together a fundraiser for me at the Belly Up Tavern in Solana Beach. It is a very cool place and I will give you the details in a minute. Let me start with what happened today. I was forwarded an email by one of the event organizers. The email was sent to the Belly Up from the tv show EXTRA and they wondering how to get a hold of Jessica. They used a different last name but the Belly Up assumed it must be me since we just did my fundraiser. Now I thought it was weird because the only show EXTRA I know of does celebrity gossip type stuff. Either way I kind of freaked out. I prayed that if this was meant to be that I do the right thing with it. I must admit though I am a big dreamer. I mean I don't sit and daydream my days away. But I guess I have a wild imagination and more than once I have spent time planning on how I would spend my lottery winnings, or what it would be like to live in the HGTV house that they give away. I have recently been planning on what I would do with my Publisher Clearing House winnings, however I have yet to enter. So you can see how easily I get myself wrapped up into these ideas and I can get really excited. My head was spinning with ideas on what I would say, what I would wear what this would mean for my family and the Lyme community. So I emailed the rep and gave him my info. Shortly after my email I got a phone call. I answered the phone and was talking to this person from EXTRA. It was obvious very quickly I was the wrong Jessica. They wanted a Jessica that had talked to Prince Harry. (He had been at the Belly Up the weekend before). Very quickly my excitement turned to disappointment. I knew it was a long shot but for about 30 minutes I was on cloud nine.

Onto the fundraiser. I have some amazing friends. I will say that the Fire Prevention Division of the Fire Department is kind of like the "red headed step child" of the family. It doesn't really matter though. My amazing Fire Prevention buddies of the last 11 years have been a big support to me and family. Yesterday was no exception. They put together a fundraiser with a couple hypnotists that work for some local Fire Departments at an amazing venue called the Belly Up Tavern. Although the crowd was small the love and support from my friends and families was amazing. Plus the show was really funny. I haven't laughed that much in a while. It was a great time and I could not be more grateful for the amazing people that God has placed in my life. I would say the fundraiser was a great success and we can certainly continue my treatment for at least another month.It's not enough for me to get to Kansas but I am still hopeful. I am blessed beyond measure. I have a lot of thank you cards to write.

Now for a treatment update. Well this wonderfully expensive IV antibiotic has been given me a little bit of a rough time. I have heard some good things though and been encouraged to keep it up as long as I can. I will start by saying my first month order from Target got screwed up and when I went to pick it up they told me that it was $4000. How can there be that much difference between brands and generics or whatever. So they had to reorder the right stuff which only took a day and I got 30 doses for the bargain price of $1427. My doctor is still searching for a cheaper place to get it. Totally praying we find that before this month runs out. I went in for my first day a few weeks ago and was in for a little bit of a surprise. First off this medication is bright orange/red. Perfect for Halloween I guess. I found it fairly quickly it changes most bodily fluids that color. (TMI I know) The funny thing is, it may change my tears colors as well. My husband has been trying his best to make me cry to test that out. Wonderful! No such luck yet. The other surprise is that is has been hard on my stomach. I assumed with it being an IV it would bypass my gut but no such luck. So extra probiotics have been in order and it seems to finally be settling down. I have felt fairly bad for the last few weeks and I think it is about time for my lyme flare so I think I have been feeling pretty rough for about 6 weeks straight now. Some old symptoms are back. I have continued with some bad twitching/seizure episodes, the creepy crawlies, constant nausea, needing to nap, insomnia and some other stuff. Plus I have had some new symptoms like daily headaches and my sound sensitivity is getting worse. Even white noise type sounds hurt my ears. So that has been a little aggravating. Plus for about the first 5 days, my IV's were taking about 2 hours. I discovered I can handle a higher drip so I now can get it done in about an hour. My skin is not happy about my bandage though. No blisters yet but I am worried that having it on there everyday with only about a 24 hour break is not going to work so well. Time will tell.

I got to attend the San Diego Lyme Walk with my mom, two daughters, and my friend Dawn. That was nice because I got to meet some other Lymies in person that I have been chatting with on-line. I also got to meet some new Lyme patients in my doctors office. All I can say is there is way to many people with Lyme. At least 9 new patients getting IV's just since I took my little break. From a mom whose 14 yr old daughter is getting a PICC line and has had a really rough time since she was 10 to a mom who was just diagnosed, is in a wheel chair because of it, has had it about as long me, and found out she gave it to her 20 yr old son while she was pregnant. Then there was the family I met today. The sweet man must be at least in his 70's. He was diagnosed with Parkinsons after some health problems the last 5 years or so. The couple is from South Dakota and staying with one of their children while he gets treatment. They have been for here since May. It just breaks me heart but we a group that really supports each other. There was 5 other patients getting IV's during my first one with the new abx. They all wanted to know what I was on and some of them are headed this direction. The other day I got in and out early but there were 9 people with Lyme on the schedule for IV's. Very sad, but we keep each other entertained in the "IV lounge".

On a different note I got to help out a food packing event with an amazing group called Friends and Family Community Connections. My family has been involved with this local non-profit for a number of years. My dad has gone to Tanzania Africa two or three times and helped build schools for the children, bring them food (that is who the food packing us for), etc. I am so proud of him. So we got to help at another food packing event this weekend and I was reminded how much I like helping people in need. I have decided to try and spend some of my "free time" volunteering in ways I haven't really been able to before. I am really excited to see what opportunities I have to help others. It will certainly help me stay positive and not focus on my illness so much. I am looking forward to helping at Operation Christmas Child at our church next weekend. KLove radio will be there and it should be a great time.

I'm going to end with a plug for www.AlwaysPositive.org. I saw their booth at the food packing and took the following pledge. I encourage you to check them out. I believe in the power of a positive attitude and possess the courage to cause positive change. I will exhibit humility when I triumph and strong character when I fail. I will begin every day with a sense of gratitude for my gifts and the desire to use them to their fullest. I will end every day with the satisfaction that I gave it my all. When I fall short, I will respond with integrity and determination to improve. I will strive to inspire others to adopt a positive attitude as I commit my talents and influence to have a positive impact on the world I touch. I Am Always Positive!

A New Normal

It has been a week and a half since my last day in the office and I am still trying to settle into my new life. What my new normal will be I am not totally sure. I guess it will take a little while for everything to fall into place. So much depends on how I feel and some of it depends on money. The good thing is I will have the time, when I feel good, to volunteer. I am so excited about the opportunity to help other people. I started today by volunteering in my daughters kindergarten class. That is always fun. I already have some other opportunities showing up. I guess I will see where things lead and just take it one day at a time.

The silver lining in my job ending was the timing. I am getting my butt kicked. New symptoms have shown up and old symptoms are back. I guess I didn't realize that my temperature issues had left for a while but with cooler weather settling in, I am once again finding I can't regulate my temperature very well. My hands and feet and cold most of the time. So cold in fact that I have to take a hot shower or bath to warm up. The problem becomes that I get so cold so I jump in a hot bath and an hour later I am sweating and can't cool off. Dealing with frozen food once again causes me excruciating pain. My joints are cracking and popping with increasing frequency. The muscle pain, weakness and creepy crawly feeling is back. The ringing in my ears is worse. I have muscle spasms everyday. I now have what seem to be tension headaches everyday. The list goes on and on. Very frustrating to say the least. Oh my insomnia is coming back and I am sleeping during the day, almost everyday. At least this past week I have felt almost as bad as I did during my worst time last year. I am not different than almost any other person with Lyme out there. We all seem to go through the same thing. You think you have turned a corner and then BAM you are knocked on your butt once again.

I saw the doctor yesterday to get my port flushed and to check and see where we were on this IV antibiotic deal. He still really wants me to take it so we are continuing the search for an affordable source to get it from. He is currently trying to work with an Indian Reservation back in the Midwest to try and get it. In the meantime, my parents decided that they didn't want to wait for me to start this and that we would find a way to pay for at least one month of this med from the pharmacy. By God's grace some amazing friends were able to pull together some money and although it would have covered 2 to 3 months of meds from Mexico we have ordered it up here in the States. Some came in today and the rest should be in on Monday. It looks like the month will cost us $1430. That is about $600 less then the other pharmacies up here but still not cheap. Especially if he wants us to do 2 to 4 months. At the appointment we discussed doing this new IV med called Invanza. He really wants to finish with a few months of that. However that med is more expensive at about $70 bucks a dose. Again, 2 to 4 months, IV everyday. So once this process starts I could have daily IV's for 4 to 8 months. God help me. That also means 2x a week to the doctor. That adds to the gas bill for sure. Maybe I need to buy a scooter. Haha. That would so not be smart. Anyways, so the doctor says, if you guys can pull together about $10,000 that should be good. I almost laughed out loud. I just have to remember I serve a big God and things are going to work out the way they should. He has already done some amazing things and will continue to do more I am sure. It makes me want to set my goal at about $20,000 so I can also try to go to Kansas. Just giving to God. He knows what I need to do and how this will work out.  We did discuss a little more about all of those viruses I tested positive for. So basically I have all of those bugs in my system. There isn't a for sure way to test if they are active  or not but they can become active if my immune system goes in the gutter. So I am praying that I can hang on and not reactivate any of those. I also had another blood test come back since my last visit that showed my inflammation levels are high. It is the C4a. Even though it was like double the normal he has seen much higher. That level probably makes sense for how awful I have been feeling. I also finally got a prescription for some pain meds. I went very mild with 400mg ibuprofen. I can double up if I need to. Most days I take nothing but there are days I need something. I was so hoping to not add pain killers into the mix but some days I will have too. The plan now is to start the new IV med on Tuesday and go from there.

I once again am trying to work on my diet. I found a great book called "Recipes for Repair" which is a cook book based on the Lyme Inflammation Diet developed by a Lyme Doctor. To give you a quick over view, there are four phases of the diet. The first phase is the most restrictive but it is only a week long. The diet of course cuts out or reduces sugars, gluten, dairy etc. So I have managed 3 meals so far and I am still alive. The good news is my husband is trying to go along with it. I really appreciate his effort. In order to give my self the best chance of sticking with this for any amount of time. I did have to give myself one little break. I still get to have my non fat mocha everyday. For anyone that knows me, or even if you have read any other entries, you know I am a hard core junk food junkie. So if a nonfat mocha is the only thing not on the list I have then for me that is amazing. I will say, the book tells me the first couple of days I might not feel great and that it will take 30 days to stop my sugar cravings. So I am hoping I can stick with this. The hard thing is it does take aways dairy and gluten for almost a month or longer also. So everything I love to eat is being taken away but I am realizing I need to go above and beyond to help my recovery.

I guess this brings my story up to date for now. I will certainly let you know how the new abx works, etc...Please check out my photo website if you haven't or my fundraising page. For those of you in the San Diego area our annual Lyme Walk is next weekend at Sea Port Village. The Lyme community would love to have your support. Then the following weekend my amazing Fire Prevention friends have arranged a fundraiser for me at the Belly Up Tavern in Solana Beach. There will be a hypnotism show and some great fun. It is on Sunday, the 23 at 3:00. Check out the Belly Ups website for more info or you can e-mail me at jessicamadson77@gmail.com for more info. Thanks for your support and keeping up on this crazy journey of mine. One last thing-Don't forget to watch "Under Our Skin" on Netflix, Hulu, some on demand cable services. It will really open your eyes to what is going on and awful reality of this disease. Love you all.

It's going to be a long road- UPDATED!

Faith is moving ahead before knowing how! (from Rick Warren I think)

Sometimes I swear I hear the Jeopardy theme song playing in my head. It makes me feel like I am running out of time. Part of that is due to the fact that I have been holding onto a piece of news that I want to share but haven't been given the official okay to do so. I was supposed to get the go ahead yesterday and it didn't happen. Go figure. At this point the actual "thing" may have taken place before I am allowed to speak. So maybe by the time I get to the end of this update and I can throw it in. Otherwise you may get a one or two sentence update later.

*So here is the news I have been holding onto. Lyme has robbed me of some things in my life but this is a big one. As of October 5th I will no longer have a job. Lyme has robbed me of a 13 year career in the Fire Service. I am not going to let this latest thing keep me down. I have to believe God has bigger and better things for me but I will admit it hurts. I always figured that if I left the Fire Service it would be my choice. This was certainly not my choice. I will miss my Fire Department family more than most people will know. All though I have worked at a couple of different agencies in San Diego, it has been my privelage to serve the San Marcos Fire Department for the last 6 yrs. Thank you all for your support during this rough time in my families life. We will be forever greatful.

So let me move onto what I can tell you about. I can tell you that the last two weeks that I have been back on abx have kicked my butt. So many of my symptoms that had diminished have come back. I guess that means there is a mass murder of bugs going on so that is part is good. It is what I have to endure that is not. My mini seizures or twitching, the weakness and creepy-crawly feeling in my arms, insomnia, needing to sleep during the day, the list goes on...have all come back. The muscle spasms and ringing in my ears is probably the worst it has ever been. I am not back at my worst but probably not far from it.

With that being said, when the doctor asked this morning if I had any improvement I had to say no. He responds that I am "a tough nut to crack". Ya think! I could tell he is frustrated for me. We discussed a number of different things at this quick visit so here is the run down. He doesn't have a strong opinion on that MRS 2000 mat thing that I tried a month or so ago. He says it works for some, not for others its just up to me if I want to try it. He is not as supportive of HBOT therapy as I thought. He is not against it but has not seen any real results in his patients that have used it. He prefers a cheaper therapy called ozone instead. You have some blood taken out, ozonated, and put back in. (I know that's not really an explanation but the general idea) It is supposed to do some good things. He definitely likes the Rife, coil, what-ever-you-want-to-call-it-machine. He gave us the name of one to check out. So I need to look into that when I am done here. We definitely talked about this IV rifampin deal. As most of you know, we still haven't been able to get this medication. Up here in the states, it would be about $4000 for 2 months and my insurance won't cover it. In Mexico, it should be closer to $600 for 2 months. We just haven't been able to track it down. He believes in this so much though that he still wants us to try and do this. So we are continuing to tap our family resources through friends and contacts to find it. My doc is trying to go through a Mexican hospital and see if he can buy it himself. I am just praying we can get this soon and get going. We are prepared to make the trip we just need a location that has it. He also clarified the 60 days straight would be a minimum. To really give it a shot we should go for 120 days straight. Minimum of an hour a day for a 120 days...sounds like fun. Guess it would be a good time to read my Bible. Then we may switch to another IV med, that is knew. He basically called it "super rocephin". Needless to say it looks like I won't be done with IV's anytime soon. He did say I should be doing fish oil and also to try something new...bamboo extract. Easily have to be at about 40+ pills a day when I am taking everything with these new additions. You wouldn't think I would have any room left for food. I know you have heard it before, but once again I am going to try to buckle down on the diet. That is probably my biggest challenge...quick/easy, taste, and money have always won out over the alternative. So I will try once again to change my eating habits. :)

I know this maybe backwards but now on to the real reason for my appointment today. "Your blood tests are too complicated to give you over the phone, the doctor wants to see you." That is the message I got from my doctors office earlier this week. Too complicated...um okay. I figured it meant something was not "normal". With this disease though nothing is ever normal. So after we discussed everything else I asked for my complicated results. My CD-57 is up to 60. So that is good. It needs to much higher but 60 at least means my immune system may be functioning on some level. Candida levels were good. YAY! Vitamin D is finally normal. So 15,000 units a day of Vitamin D it is for me. Now the not so great news. I have high/positive tests for four other viruses. Now this wasn't a complete shock since I know a lot of Lymies have these issues but it still doesn't make me happy. It doesn't mean that these are infections are current but they are present in my system. I don't know enough to say how common it is for them to reactivate or what even their dormant presence does to my system but bottom line is I don't want four viruses, two co-infections, and lyme hanging out in my body. That is a lot this body has been enduring for all of these years. Here is the list...Human Herpes Virus Type 6 (HHV6), Epstein Barr Virus (EBV), Mycoplasma Pneumoniae, and Chylamydia Pneumoniae ( and no this is NOT the std). The last two are forms of pneumonia which I have had at least twice growing up. So anyways, maybe this plays into why things haven't been as easy to solve. I haven't made the improvements the doctor expected.

Lots to think about for sure. With that, I guess I will have to come back a little later with my other piece of news. Still waiting for the official okay to say something. I guess nothing super bad will happen if I spill the beans first but I am using my patience and waiting until I am supposed to.

P.S. My wonderful extended "family" is working on a fundraiser to help my family out. I will keep you posted on the details as I get them. Thank you for all your hard work...you know who you are! I love you all.

Going International

It's been another couple of weeks and I kind of have a lot to say but may not get to it all. The past few days have been a little crazy to say the least. I have gone from feeling blessed to defeated and back again in just a matter of moments it seems. I have had some rough days physically but for a little while I was on an emotional high. I just felt blessed despite the pain. I still feel blessed but the devil is certainly using every opportunity to tear me down. The last few days I have had a substantial amount of pain. I'm having headaches almost daily. I've had a very loud ringing in my ears and lots of muscle spasms. I have a sore throat. The pain is the worst though.

I have had some substantial changes at work that I can't really say more about right now and my treatment has just been turned upside down. I had my doctors appointment yesterday and was expecting to start back on my abx including the IV Rocephin  2x a day, 3 days a week for the next two months. After meeting with the doctor and discussing symptoms, progress, etc...he informed me of the new plan. Now it is hard to think on my feet sometimes so I didn't really ask for the whys. I just said okay. I trust my doc. Since the appointment I have had a little more time to process things. This is a big change. I am going back on my two oral abx. They are both twice a day but one is two weeks on, two weeks off. Then we are switching my IV abx. I am now going to be using something called rifampin. I have heard a lot of others lymies use it. I am finding out though that a lot of them used it orally. They were usually put on it for a co-infection called Bartonella. I haven't been diagnosed with Bart but could still have it. My doc is putting me on it for the lyme though and said it has the added benefit of taking care of a number of co-infections as well. That all sounds great so far although it has really kicked some peoples butts. Then I find out it is 1 IV a day, infused over 1 hour, every day for 60 days. So I now have 60 days straight of IV's. I have to go in twice a week to the doctors office to get my needle changed out. Not looking so wonderful anymore but okay it is what the doctor wants. Now here comes the kicker...in the US this medicine runs $50 a dose or higher. The few pharmacies I checked said my insurance won't cover it and for the 60 day supply I was looking at between $3000 to $4000. That would be the reason my doctor told me I need to go to Mexico to get it. Now 10 years ago that may not have been so bad. We went to TJ on occasion which wasn't a major deal. Now its a much bigger deal. I have to get a passport which could cost me $200. I need to expedite the passport process so I can get my meds asap. The doctor is supposed to call me with the pharmacy he wants me to use. The medicine should cost me closer to $600 down there. That is still not cheap but much more doable than getting it here in the US. I am not sure though how I feel about crossing the boarder with $600 cash and having to go through customs with a bunch of bottles of white powder. This is going to take some work and a lot of prayer to say the least. So I guess that is where things are at.

I am still in a prayer over going to the Hansa Center in Kansas. I did talk with them and it would cost me about $6000 to $7500 for two weeks maybe more. That is in addition to airfare and hotel. So if I could magically pull together about $10,000 then I would be gone it a heartbeat and leave my abx in Mexico. So things are really up in the air but I serve a big God. My prayer recently has been for me to submit to God's will and plan for my life without interfering. That has always been an on-gong request of mine as you know. How much do get involved with the issues at work or other things and try to change the direction they are going. I am finally learning to stop. I asked God if could make some of these things clear to me without them making sense. Like confirm that I am on the right path even when it doesn't sense. He did that very thing yesterday shortly after I prayed that prayer. Here was the answer he gave me through a friend..."Do not make decisions based on money".  The next few weeks will be really interesting and probably life changing. Thanks for your support.

Riding Shotgun

"If you're going through hell, keep on moving, face that fire, walk right through it, you might get out before the devil even knows your there"- Rodney Atkins

While it is 10 pm and I should be sleeping my brain is in overdrive and I just took a bunch of pills so I need to be up for a little bit. What a perfect time for an update. I'm done saying that this will be a quick update. I think you know by now, they never are. I could go on forever it seems. Now, where to begin...

I'll start by letting you know that I got a 30 day extension at work. At the end of the 30 days I have to go through the whole doctors note routine again and we will go from there. Options are really slim as far as work goes. The bottom line is my "recovery" is not cooperating with the City's time line. For any one who knows about this disease that comes as no surprise. When does Lyme ever cooperate? Maybe never. Regardless, I am blessed to have another 30 days and I am really letting God take control. I am feeling more and more comfortable with the fact that I am giving up control. I'm letting Jesus take the wheel and as much as I like to drive, it's not so bad riding shotgun on this road trip. I think I am learning to sit back and relax.

Completely surprised but my sauna came a few weeks ago just like they said. After hearing some nightmare stories from some friends I wasn't convinced it could be here in less than week from when it was ordered but sure enough it was. Because I was finishing up my last week of antibiotics before my 2 month break I wasn't the first one to use it. That was ok I was just so excited to have it. My husband got the job of putting it together. It actually was a fairly quick process  and with in just a few hours of it being delivered my husband climbed in and started to sweat. Now he has never used one and I had a feeling he was going to love it. I was right. I almost wonder if he loves the sauna more than me. Just kidding. Can I just say though, regardless of your health, if you can ever afford to buy one do it. The health benefits alone are worth it. It is just relaxing and makes you feel good, well unless you are killing bugs like me then sometimes not so good but I just highly recommend you look into them. I don't think you will regret it. As a side note the weight loss part is great, my husband is dropping pounds and loving it. So since stopping the antibiotics, starting the new medicine, and using the sauna I must admit it has been a little rougher than I thought. It is so hard to tell what is really going on. I have been really sick to my stomach the past few days and I am almost sure that that is the new medicine. Some of the other symptoms though are hard to tell. Is it a herx because the heat from the sauna is killing bugs, is it just part of detoxing, is it a relapse from no abx. I am not looking forward to starting the abx up again. I'm really scared of what type of herx I might have. There is not much more I can go through at home before I am sure I would end up in the ER. As any lyme person will tell you, you want to avoid that at all costs. It's usually not worth it. On the other hand though, if you think you are dying what choice do you have? I am not going to worry about and if I'm truly letting Jesus take the wheel, that means I'm letting Him drive down that road too.

Speaking of symptoms and herxing the heart issues have been fairly steady. Nothing super crazy but fairly consistent and enough to drive me nuts. I did an echo last week which was normal. (No surprise there) I did the stress test on the treadmill today. That test kicked my but and I had to come home and go to sleep. I did better than some of my other tests so that is a plus. However, in my book it was still an epic fail. I managed to get my heart rate up to 190 in about 7 minutes. The cardiologist said I did fine. I exceeded my maximum heart rate by a little doing moderate exercise. Not bad. Not bad? I'm WALKING up a hill and within 7 minutes my heart is maxed it, I'm weak in the knees and I can't breathe and that's not bad. Don't forget, this test was done with me on two different medications to control my heart rate. Needless to say I am still very frustrated by the whole thing. "Inappropriate Sinus Tach" seems to be the consensus but it still drives me nuts. I am just praying that when we get the lyme and co-infections in remission that this issue will resolve itself for the most part. The other crazy part of this is the shortness of breath. You really feel like you are crazy when you feel like it is very hard to breath, you can't talk in complete sentences and your o2 saturation is 100%. Just confuses me to no end. I just need to follow up with some blood work and we will go from there. I have been working on my "heart breathing". I need to do it more often but I always do it in the sauna. Focus on my breathing, then breathing through my heart, then happy thoughts...which leads me to the last thing for the night.

Once again some amazing things have happened in the last day or two that just remind me how blessed I am. I'm not ready to share all of the details but God is doing some things behind the scenes so to speak and my husband and I both believe that what has gone on in just the last 24 hours is part of God's way of letting us know we are on the right track. I think some big things are in store for us and I can't wait. It is so interesting how God's timing works as well. I had a very rough end to my work week last week with some frustrations over something I felt I deserved that I didn't get only to see someone else turnaround and get it. I literally had to leave the office before I said something I would regret. In my husbands usual style, he reminded me I was wasting time being mad over something I couldn't change. I knew he was right but, but, but, well I still wanted to be upset. Long story short, I got over it, and am so happy that things went the way they did. One, I found out that the other person did truly need what they asked for. Second, if that situation would have worked in my favor then it wouldn't have allowed God to bless us like He has. I'm still learning day by day. I'm still human and get upset and think life is unfair sometimes but in the end I'm realizing I can only see one small part of the picture. Someone else has a much better view...

In closing I just wanted to send out an extra big THANK YOU and hugs to all of my amazing friends for your support. You know who you are, and God has put you in my life for a reason. I am so thankful for each and everyone of you.  Just in case you forgot...there are a couple of ways you can support me and family during this time. First you can pray for us. I don't underestimate the power of prayer and I could use all the prayers I can get. Second we would obviously accept your financial donations. You can do that from the blog by clicking on my "go fund me" link. You can buy some of my photography from my fototime link on my blog. Lastly you can watch the documentary "Under Our Skin" which is now available on Netflix to watch instantly. Thanks for following along. I'd love to hear from you. (Just so you know financially where we stand...we owe the doctors office roughly $1300 to catch up on my IV's we have done so far. If the 2 months off/on plan works and we are pretty much done after that then we still need to come up with about $5000. I just feel better letting you know what the costs really are.) Have a good night.
'

Changes and Blessings

You might have noticed I changed the title and description of my blog. It has been something I have been thinking about for a little while and now just seemed like a perfect time. That doesn't mean that the content of my blog is really going to change. I just think it is important that I help myself break the my identity as only a lymie. Lyme disease is something I am I will probably think about everyday for the rest of my life. As long as this disease is active it will always be at the forefront of my mind. I just need to remind myself that I am not just a lymie though. I was a daughter, friend, wife, mom, fire inspector, etc...all before I could identify myself as a lymie. Because lyme affects every part of my life it's virtually impossible to separate it all. I hope you will still keep up with my journey.

The title of my blog isn't the only change that I have going on. After seeing my doc today it looks like some more changes are in my future.I updated my doc about my appointments with my llnd and the new cardiologist. He wasn't really happy about my new heart medicine. He feels that any of the heart meds are just a band aid to the the problem. I would have to agree but no one has given me a better solution to my heart problems. I still don't know the cause of my heart issues. It may be lyme or one of the co-infections or something else. At this point we just don't know and may never know. At this time I am not going to stop the new medication but I am going to try a form of meditation and see if it helps. Quite a while ago, in the midst of my heart trouble, I found something called the Institute of Heart Math. I wouldn't know how to explain it but I would say look it up. Anyways, my doc brought it up to me and explained a little about the science behind this meditation practice of heart centered breathing and focusing on something positive, something that makes me happy. Basically this practice is supposed to be able to change the way my heart is functioning. It certainly can't hurt. I am hoping to find my heart monitor so I can better track my heart rate and hopefully I will be able to see a noticeable difference.

Next we discussed the fact that I don't really feel like I have made much improvement in the past few months. We discussed my llnd's opinion on my need for detox. I told the doc that I am getting a sauna( should be here tomorrow YEAH!). He was very excited for me and I have heard from a few people that it made a big difference in how they felt so I am praying this will get me headed in the right direction. The doc put me on selenium, vit a, and zinc which all should be helpful. Then came the biggest change...we have decided to finish this week of IV antibiotics and that stop all antibiotics for 2 months. The plan is to go 2 months off, 2 months on, 2 months off, 2 months off and be done. I am so excited and nervous at the same time. He also has me starting diflucan during the months off. The way the doc explained it was the diflucan will paralyze the bugs and keep them from dumping toxins when I start the meds back up. I have to talk to some other lymies and see if they have done the diflucan and how it has worked. I didn't get to read like normal during my IV today because I ended up talking to two lymies. One lady I have seen before. She is has/is really sick but her lyme is actually in remission. She is just dealing with a bunch of other stuff from being sick so long. Then a new lymie that I have met on the computer came in. She just started her IV this week. It was nice to connect in person. the sad thing was the nurse told me 3 new patients start IV treatment for lyme next week. This disease is everywhere and can affect anybody. Just blows my mind. Anyways, I am excited to see how the next month or two goes. The change is perfect timing with the sauna coming in. Now I have more freedom to use it. I am going to try to get back to the gym also and just do whatever I can to help this detox process along. I will say I have been very consistent with my protein shake and I feel like I am starting to cut some of the other sugar out. That is a huge accomplishment for me. Yeah for that too.

The doctor did write a new note for work. The new note however says that there are going to be no changes to my work schedule for at least 3 months. I have to take this new note and meet with HR and the Chief tomorrow to renegotiate. I know I will be super nervous but I am really feeling like it is out of my hands. Essentially, even if I can increase how much I am working at the end of 3 months I won't be full time/full duty with no restrictions for at least 8 months. That my just be a deal breaker with the City. It is what it is and I am actually feeling comfortable with however things go. I'll try to update after my meeting tomorrow, so stay tuned. There may be bigger changes yet to come.

I wanted to end by sharing how blessed I am. Through this entire ordeal I have been blessed. I can look back at my darkest moments and see that I was blessed even when it didn't seem like it at the moment. I have started reading a book called Life Interrupted that has been a huge help. I just feel like God has been working behind the scenes and I am starting to get a glimpse of what may be coming. It certainly makes me excited. I am ready for some big changes. I still have my ups and downs. I still have some moments where I feel like this situation is hopeless but they seem to be brief and I just am starting to get excited about what the future holds. Can't wait to share more of this journey in the coming weeks. Keep the prayers coming. I can still use help in paying for medical bills. How sad that I would say for my birthday I would like help paying for my medical bills but it is true. You know where the donate button is. Here's to hoping you all are having a great summer and that life is treating you good.

The Mirror Does Lie

"The Lord is Kind for ever and ever; the nations will perish from His land.  You hear, O Lord, the desire of the afflicted; You encourage them, and You listen to their cry, defending the fatherless and the oppressed, in order that man, who is of the earth, may terrify no more." Psalm 10:16-18 NIV

I've decided to start my entries with a Bible verse, song, or some encouraging word. That way there is always something positive that you can take away. I have a lot of supporters who read this just to keep up with my journey but I also have a lot of Lymies that read this too. No matter who you are or what your circumstances are I hope you can find some comfort in the words I choose to share.

Moving on, things have been really rough lately. Not just physically but emotionally and mentally too. This disease lets nothing rest. I had the chance to see some friends I don't get to see but maybe once a year this past weekend. It was nice to have a chance to see them even if only for a little bit. They were eager to see me as they have been following along this journey. As seems to be the norm lately, I was told how great I look. I hear that a lot. I have even noticed myself, that I do "cleanup" pretty well. I'm sure people are just being nice but if there is  any truth to what they say then I can't imagine how amazing I might look if I was well. The truth that has just been in my face this past week is that the mirror lies. My doctor says I look good and I must admit sometimes I agree. It just makes it difficult to even look at yourself and think I don't look sick. And if I don't look sick how on earth can I feel so bad.

Again I have faced some really tough days. Yesterday I actually had to call in sick to work. I woke up in pain but had every intention of pushing through like I have so many other days. Then out of the blue, I got dizzy and nauseous and my heart was not happy. I had a bad headache and backache and didn't get off the couch until dinner time. There were moments yesterday where I thought I could be dying. Everything in my body seemed to dysfunctioning (if that's even a word). It gets downright scary. I find myself either praying to God to get me through this with out panicking and to just let me fall asleep. Then there are very brief moments when I think God if this is what the rest of my life is going to be like take me please. Of course I don't want to die right now. I want to be here with my kids and husband. I know I have something else to accomplish. There are just times when you physically feel like you body is going to just start shutting down and your not sure what to do. I got up off the couch to go to bed and ended up in the kitchen with tears streaming down my face from the pain. God, it is not okay to be in this much pain. It's not. I can't handle anymore pain. I woke up this morning so obviously I handled it or God handled it for me I guess.

All of this once again raises concerns about the future. Will I ever be able to work again full time? Right now I don't see that in the near future. I don't know that I see that happening this year. That really leaves a lot to be discussed.  Once again the financial strain that this has caused my family just adds to the stress. This stress is felt by my parents as they have taken us in and on multiple occasions had to come up with hundreds of dollars for treatment and doctors. I find myself maybe hiding the truth. I don't want to run to them every time I run out of a supplement or medication and don't have the money to pay for it. In a perfect world my supplements would be a standing order shipped every month with no questions asked. The money would always be there. As I have said before this scenario is true for almost every person with Lyme out there. Although there are some rich and famous people that have been afflicted with Lyme there stories just don't seem to be as bad. I have to believe that is largely in part due to the fact that can seek the meds and the treatments that the rest of us can only wish for. Maybe I am totally wrong but I am not the only that feels this a disease for the "rich". The insurance companies are not on your side. As a wife and a mother I struggle with putting myself first. So when I have to look at what the cost of treating my disease maybe taking away from children it is hard to put it first. My kids deserve so much more than they have gotten that it is hard to know that I have taken something away from them to try and fight this. It wears on your mind. I mean if there isn't a cure then am I just wasting time and money? I know that is not the case. I believe I may be able to get back to fairly normal life. I am not ready to give up but this just shows you the kind of head games you can get sucked into with this.

My one doc is out of town until the middle of July so I set up a regular appointment with him for when he returns. Although he usually pops his head in during my IV it is not a true appointment to reevaluate where we are going. I also need  to schedule an appointment with my LLND. I guess I need to have the discussion of if I can't take or do everything what are the most important or beneficial things I can take or do? I have also scheduled an important with a cardiologist who is supposed to by Lyme knowledgeable or friendly. I just can't shake the concern that Lyme is damaging my heart in some way that we just haven't seen yet. What test have we not done? I mean all of the other cardiologist said my electrical issues were not life threatening and I didn't need to be concerned that my heart can go over 200. Although the cardiac specialist had never seen a heart rate as high as mine had gotten, 272 bpm, I should not worry. The only issue with a high rate like mine is that the heart muscle may wear out quicker than normal but again I don't have anything to worry about. Does that make sense to anybody? Plus the leading cause of Lyme related deaths, besides suicide, are cardiac issues. The few I have heard about don't seem to be people that got deathly ill and died without having a chance to undergo treatment. These are people, that had lyme for a long time, like me, and were in ongoing, long term treatment. Maybe even a few years into treatment they lost the fight. I just want to cover my bases.

I'm still working through this all as you can tell. This has certainly been the longest roller coaster ride I have ever been on. I question too how soon I can afford and should I get my kids tested. I don't want them to go through what I have been through. Part of my wants to stop my treatment and focus on them for a while. It's like the scenario on the plane of putting your oxygen mask on first. I can see it both ways. If I'm not better how can I support my children should they be diagnosed. Then again, if my treatment drags on for years, which it certainly looks like it is going too, how much damage could I be doing to them by not getting them treated right now. Lots to pray about and figure out.

Well I think I have thoroughly exhausted my brain for now. There is rest that is needed, plus errands to run and even a quick trip into work today and tomorrow. I hope everyone has a great fathers day weekend. Please let you dads and husbands (if they are fathers) know just how much they mean to you. To all of you, whose dad has passed, my heart goes out to you as this can always be a tough day. Thanks for all of the support.

Status Quo

Well another week of work has come to an end. I have once again survived. This week was a little tougher than the last. I did manage to have two days or so last week where my biggest issue was being tired. That was improvement from the previous few weeks. Unfortunately it didn't last long. Symptoms have ramped back up this week. The tiredness and fatigue never goes away. Some pain has come back. In fact today I have had a lot of the burning nerve pain migrating around. Yesterday I had a little tremor and twitching episode at work along with some weakness. I also had one little spot on the tip of my nose that was going numb on and off through out the day. This disease is so weird. I have had a lot of muscle aching back in my arms and the shortness of breath is back. I had to walk up a hill at a job site and got my butt kicked. So frustrating. I can't keep up on my supplements due to the money issue. I am hoping that once we get into me having a paycheck again we can get into a routine of being able to by supplements before they run out. I haven't had a chance to talk to the doctor about my labs with the heavy metal. Hopefully I can do that soon. Really, I just realized I have a lab slip for blood work that i have had for at least a month. I keep forgetting to go. Hate Lyme brain. Well anyways, I picked up something new today to try for detox. I also have inquired about the cost of HBOT but the place in San Diego I e-mailed hasn't gotten back to me. I hear it's really pricey but it is worth looking into. I just don't know if I can do it while I have my port in. I'm looking into it. I went and saw the eye doctor yesterday and my prescription has changed a little bit but the good news is there seems to be no damage from the Plaquenil I was taking. Not much else has changed. The symptoms just keep hanging in there and I'm not feeling much better. Some days has just knocked me out and put into bed as soon as I get home. The money and cost of my treatments is still a mess. There just isn't enough to cover it all but God has continued to provide and I am better off than a lot of other Lyme patients. We could still use your help though so if you are so inclined please check out the links to my photo site and purchase some of my work or go to my donation site and make a secure donation to help me cover my medical costs. I am hanging in there but could certainly still use your prayers. We have recently gained some ground in the Lyme community but we still have a long way to go in the political battle. Don't forget to watch the award winning documentary "Under Our Skin" as it is now available on demand for a lot of cable companies and also available for instant viewing on Netflix. I'll continue to keep you posted. I think there is a few other things that I wanted to say but at this point my brain just isn't cooperating.

Crazy Good

I promised an update on my crazy good doctors appointment yesterday. Sorry it took me so long to get to. Things have been busy and I was just to tired last night. I must apologize, as usual I did not go back and ready my most recent posts, so if any of this is a repeat, I'm sorry.

Last week, when I went to the doctor,  I didn't get a chance to see him. When I go to the office once a week it is to access the port and do my first IV. A lot of times the doctor stops in and we chat but I hadn't seen him in a few weeks. I did have that phone call with him about my lab work so I was hoping to talk with him but I didn't get the chance. We did a big bag of IV vitamins at that appointment and I was sent home with IV Vitamin C to do once a day after my antibiotics. The doctor wanted to try this because of the amount of pain I was having. To my surprise, the intense joint and bone pain I was having went away. I haven't had it in a week. Yay. So yesterday I got to see the doctor for a regular appointment and the decision was at to continue with Vitamin C. I am hoping the pain continues to stay gone, of course. We briefly reviewed my labs again which were all good except for that Vitamin D level. I know it is common especially in women with Lyme to have low Vitamin D but I have already been supplementing. He didn't feel there was a specific reason I wasn't absorbing it, he just said to take a third pill a day. That is 15,000 IU of Vitamin D. He said it is really important we get it up so I am hoping this third pill works.  My CD-57, if I didn't mention last time, is 61 or 63. Over 60 is good for a Lymie. Here's to hoping it continues to rise back up to a normal range which is about 200.

As we continued our discussion about my progress, we decided I needed to go back on Tinadazole (Tindamax). In Lyme it is used as a cyst buster. Spirochetes like to ball up into cysts and you can't kill them  until you bust the cyst. So twice a day for 2 weeks, then two weeks off. It is really sad that I was on this earlier in my treatment and I don't remember how it affected me or why I stopped taking it. Who knows with my Lyme brain, maybe I just didn't refill it one time. Sad but true. I don't have a clue. I have to go back through my blog and my notes to see if I can find the answer. Then the really exciting stuff came. I can stop my Doxycycline. So awesome because I hate that drug with a passion. I also get to stop my Plaquenil. Two antibiotics gone! If I continue to feel good, we will get to a point where I can take a medication break for about 6 weeks. Then I will go back on for 6 weeks, then off again and on again. Doctor feels in 6 more months I will really feeling great. I'm a happy girl.

The next thing he brought up is way cool also. He decided to screen me for heavy metal toxicity. Now I have obviously been making improvements so that is a good sign. Heavy metals can interfere with treatment. Sometimes, when people don't get better or stop making progress, it is due to heavy metals. I have been wanting to do this for a while so I am excited. Just another thing to cross of the list. WARNING...TMI coming. For the screening, I have to collect 8 consecutive hours of urine and bring it in to my appointment. Then instead of my IV abx, they are going to give me a chelation treatment. (That helps get rid of the metals) Then following the treatment, 8 more consecutive hours of collection. They then analyze the difference and we go from there. So excited to get the results. My only concern, is the symptoms, detoxing heavy metals can cause. My Lyme cycle should be in about 1 1/2 to 2 weeks and I don't want to have anything else to contend with because I WILL BE BACK AT WORK.

Doctors release and approval for modified duty is done. Now I am just waiting for the final schedule approval from the City. My proposal is M,T,W from 8:30 to 3:30 so start. We will see how I do and go from there. A complete release to full time unrestricted duty probably won't happen until my port is out. I have been so nervous about this as I have shared but this past day, or two, or three I have been feeling fairly good besides being tired. So now I can say I am excited, still nervous, but excited.

The one bad thing I have to share is what my 7 year old daughter told me when I said I was going back to work. She started to cry and basically said- Mommy, even though I have missed the money (she knows things are tight) I don't want you to go back. I will miss spending time with you. I don't want to go back to daycare. Now if that didn't completely break my heart and make me cry. I guess I haven't thought of this time I have had off as worth much to my kids. I have been sick and just felt they were missing out on me so much. Who knew, even the sick mommy was better that the always working mommy. My goal is to not work forever. My kids need me. For right now though, it is what I have to do. God's in control and He knows what He's doing.

With that, I guess I'm done for now. I couldn't ask for a better week leading up to me going back to work. Busy softball playoff schedule for Jenna this week. Closing ceremonies and team pool party on Saturday and Mothers Day Sunday (even though Ryan has to work on Sunday). You know me by now to realize I probably forget something or will have more to say the closer I get to going back to work. Thanks again for the support. Don't forget May is Lyme Disease awareness month. Do something...Educate yourself, support my treatment financially, watch the amazing documentary Under Our Skin on Netflix.