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. 

A Race I Didn't Enter

One of my proudest accomplishments was completing the 2008 San Diego Breast Cancer 3-Day. I chose to enter that event, I did the fundraising, I trained, and I walked every step of that almost 60 miles. I was so proud of myself for sticking with it. It was truly an amazing feeling to walk across that finish line knowing that I pushed past my aching tired muscles, blistered feet and being away from husband and kids and I did it. . 

Now whether what followed was strictly brought on by the physical stress of that event or whether it was a combination of things or strictly coincidence I'll probably never know. Shortly after completing the 3-Day I woke up with some unexplainable muscle pain. Over the next few days the pain became debilitating and severe and as it faded I was left with extreme weakness in my arms. It was so bad in fact, I couldn't drive or even write.  Off to the doctor I went and that pivotal event is what led me on my journey to a final diagnosis of Lyme Disease and related issues a year and half later. 

As I was mulling things over the other day, I thought how God is like my personal trainer and that the last 5 years were like a race. I would say a 5k. The problem is, it is a race I didn't enter. My "trainer" entered me in the race believing/knowing that I would make it. That I would cross the finish line. I couldn't have disagreed more but have I have pushed through, with my trainer by my side. Day by day, moment by moment, I have pushed through and made it this far. The issue I'm struggling with now is the fact that my trainer has once again entered me in a race I didn't ask to run. I feel like I'm starting the most grueling marathon, no lets say triathlon in the world. The run is all up hill. The road race is all up hill on a pothole covered road. The swim is in the midst of rough waters with almost hurricane force winds. I may have the best trainer in the world, but my initial reaction is He's nuts and He has set me up for failure. I already feel like I've lost the race and I have only run the first hundred yards. In my rare moments of clarity I acknowledge that those feelings are false and that He knows what He's doing and I am doing my best to trust Him every moment of every day. My faith is being tested and the reality is I am scared. I am scared, and angry, and frustrated, and defeated and for me the peace that passes all understanding has not set in yet. The only thing I can do is hold on to the hope that His peace is coming and when all is said and done I will be victorious and win the race of my life.

Just over 3 years after my life changing diagnosis I sit here not feeling much better that when I started. I don't know that overall I am any better. A few things have gotten less problematic as other things have gotten worse. My burning nerve pain rarely makes an appearance while my brain function continues to get worse. I had a few days of fumbling over my words and not making sense a few weeks ago it made my wonder if that is what happens when someone has a stroke. My heart continues to cause me problems to which I still have no clear answer and the fatigue continues to plague me daily. Some days the only thing I manage to do is get the kids to and from school.  My immune system is back in the trash. I'm back on multiple antibiotics and have been wondering where to go  and what to do next. What else can I try that I haven't? Not much with out winning the lotto. We have held our head above water with the generous help of friends and family (for which we are forever grateful) but the bank accounts are drained. Insurance still doesn't want to play nice in the sandbox of the Lyme world and without winning the lotto the options become very limited.

After talking with my doctor, we have agreed it would be worth it for me to try something called ozone. It is not a new procedure but more and more evidence is coming out stating the ozone is beneficial to people with Lyme. I will go in once a week and have a pint of blood removed. As it is removed it will be passed under UVC light which should kill different bacteria and such from my blood. It will then be infused with ozone which is basically adding an extra molecule to my blood. Then it will pass back under the UVC light as it re-enters my body. The procedure only lasts about 20 minutes and I will start with about 10 sessions. I am told it will very possibly be a rough 3 to 4 months once I start but I should see improvements after that and then maybe only do it occasionally. This costs roughly $150 a treatment. It's not exactly cheap but it is better than the cost of a very promising treatment the doctor talked to me about. Although this other treatment could be shared with my daughters the minimum it would cost us for the year it takes to do is $17,000. Something that's just not lying around at a moment.

This brings me to the toughest thing I/we have been dealing with over the last few months. I know I have mentioned that both of my girls most likely have Lyme. In fact during our visit to the Hansa Center last year, they confirmed that my now 10 year old in fact had active Lyme. (see previous posts) We did some natural herbal and homeopathic treatments for both of our girls and have been in a constant quandary of what to do next? We need to do the blood work which is not cheap and we need to decided what doctor we are going to take them to. I recently talked with the doctor I wanted them to see and he has stopped taking insurance so our options are slowly being narrowed and really we will be left with one. My girls have doing ok but very recently things have changed and kind of quickly which is where this being thrown into a triathlon has come from. My youngest daughter who just turned 7 had been struggling in school last year. Without going into all of the details the bottom line is she was diagnosed at the beginning of summer with executive functioning issues and Sensory Processing Disorder (SPD). I will have to write another post to give you all the details of those two issues but they are fairly significant. A lot of autistic children suffer from SPD but my daughter does not fall on the autism spectrum. With the number of autistic children testing positive for Lyme I felt that it was probably the same case with SPD. Sure enough between my doctor and the research I have doing it is very evident the Lyme can absolutely trigger SPD. And very similar to Lyme, SPD is not well accepted in the medical community. I was kind of told by my pediatrician, whom I really like, that in general the medical community doesn't care if your kid struggles with reading, writing, reversing numbers, etc...Insurance certainly doesn't want any part of of it. So we are left trying to pay a minimum of $325 a week for the therapy and help she needs or doing the dance of wording things so that insurance will at least approve an evaluation by an occupational therapist.  If we can at least get an eval, then we pray we get a good OT that can determine there are things my baby needs help with that the insurance won't throw a fit about. We are currently waiting for the approval for the evaluation. In the meantime my little one is starting to have a really difficult time and my husband and I are so unprepared with how to deal with this. Daily meltdowns make you feel like you are dealing with a spoiled 3 year old but the reality is she just doesn't know how to deal with how she feels from everything in her outside world. It is heartbreaking and frustrating on a daily basis. Part of me can't help but feel the extra difficulties of the past week are somewhat due to a strong antibiotic she was put on for an ear and sinus infection and that it is killing off some Lyme bacteria causing a flare in her symptoms.

The bottom line is all of this at the moment has left me feeling very guilty. Every once in a while I can tell myself that this is not my fault. This is still so new and overwhelming though that I can't help but fall apart in desperate moments blaming myself for giving my girls Lyme and being the cause of their struggles and pain. I didn't know a heart could break so much and still manage to beat. I pray constantly that God just takes this away from them. As a mom, I want to take it all away. I hate to see my kids suffer more than anything. Prayer is about all I have right now as we try and navigate these rough waters. I'm sure I will be able to look back on this in the end and realize my trainer had it under control. For the moment, I need to relinquish my need to try to fix it myself and remind myself that God is ever faithful. He sees our struggle is by our side every step of the way. Breath by breath I have to continue on to the finish line of what seems to be an impossible race, regardless of the fact this is a race I didn't enter.

152

I don't know how I did it. I honestly don't know how I pulled off being a full time working mom for 7 years. As much as I enjoyed my work, loved my co-workers, and needed the money I wouldn't go back to being away from my family like that. Although I will admit the full time job I have now, the one of fighting this dis-ease makes my life seem crazier then it did before. 

I really feel like we are at a crossroads with treatment and I don't know where to go next. I know I keep saying this, but it is beyond frustrating to not have a standard checklist of where to start. In reality Lyme is only part of the picture. That is why the name change to MCIDS (multi chronic infectious disease syndrome) seems better. Even with that there is so much more going on. You can have immune system, hormone, genetic, detox, a million more issues. There isn't even a standard list of tests to run. I feel fortunate on some level to have a lot of options presented to me over the past few weeks. Trying to research all of them and make a decision is proving to be very difficult. Then reality once again slaps you in the face and it really comes down to money. Money that my family doesn't have. Add to this that we have two children that we desperately need to get help and it just all becomes too overwhelming. With each passing moment there is mounting pressure on what to do for our girls. Every complaint of pain or some weird symptom almost paralyzes me and I desperately want to get them well so they do not have to endure this. What are we supposed to do? At this point all I can do is pray that God leads us where to go. I have at least 6 health practitioners that I am considering seeing. There is definitely a lot of information to review. 

With all of that being said, I am proud of the fact that I am really making progress in the areas of diet and exercise. It has become clear to me that there are multiple things out of my control and that I will benefit by focusing on what I can control. Diet and exercise are the two main things I have been working on. The 30 days of clean eating my family tried was really difficult but it was definitely a catalyst for change. We have continued to pursue changing our diet and it is getting easier as time goes on. We have reduced the amount of grain, sugar and dairy we are eating over all. Most of the dairy we do eat is now RAW. We have increased the amount of fruits and vegetables we eat,  most of which are organic. The amount of packaged food we eat is definitely reduced. I can't say that I feel amazing but I am losing my cravings for the junk and it just doesn't sound appealing to me anymore. My acupuncturist really wanted me to focus on eating cooked vegetables for a week and I really started to lose my cravings when I did that. I am happy that we are making improvements and that my husband is on board as well. The kids are not thrilled about it but they are coming around to the idea a little at a time. My six year old is still suffering from low iron so we are really focusing on bringing those levels up. An important thing you may not know is that dairy can actually bind the iron while vitamin c helps it be absorbed. So making our green smoothies with spinach and no dairy (use almond milk) or eating eggs with orange juice are things we are doing to help her out. We also just got a new juicer. I have researched and agonized over the blender vs juicer dilemma. The bottom line is you need to do what works for your family. We have a Ninja blender for our smoothies and are now using a Jack La Lanne Power Juicer for our juice. This just seemed to fit our budget and needs the best. Do what works. We are still getting amazing benefits and are eating healthier that we ever have. 

Now comes the exercise. I know I said a few weeks ago that I was going to put it all out there so I was accountable to people other than my husband for my health. Although I probably won't post pictures until later I will say my starting weight is 152 lbs. This is one of those things that is very personal. I think especially for women. I know I shouldn't have a magic number but I kind of do. I am treating it more like a goal number but when I am comfortable with how I feel and look then that is what will matter regardless of what the scale says. So my goal would be to get down to 135 lbs. However since muscle weighs more than fat, I may not reach that goal. I just want to feel strong and be confident in how I look. So my journey to being in better shape has started. I ended up finding an amazing trainer and I have had the best workouts of my life with him. It has only been a few sessions but I am a total believer in his approach and can't wait to see my transformation over the next few months. The story of how I found him is really cool but I will have to save that for another day. The one thing I have not been happy with is my heart, but I am not going to quit. My heart rate was 183 during my workout out the other day. It is very frustrating but the cardiologist says its fine. I can't say I agree but they assured me I don't have anything life threatening. If I fall over and die due to a heart issue you heard it from me, the cardiologist said not to worry. 

I am waiting for some test results for my adrenal glands and have some more information on my thyroid issue but that too will have to wait until next time. Thanks for following along and supporting me in this crazy journey. For all my San Diego friends, the San Diego Lyme Walk is Saturday October 13 at Seaport Village. Would love to see you there! Hugs to all my fellow warriors out there. Don't give up. Take it one moment at a time and fight hard. (I will update my current protocol too)

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- Survey Says...

I think I say this a lot but- What a day! This brings back memories of my first trip to Hansa. Information overload. I was ready this time and took notes but I am still not sure I comprehend everything. Of course as I start to process things questions come up so I will be making my list of questions for the doctor here shortly.  I wish I could take the "essence" of Hansa with me always. It is almost like magic that you walk through the doors and you swear you will eat right, take all of your remedies everyday on time, drink plenty of water, detox, meditate, think positive, etc...but then reality sets in when you leave and it starts you start to let those things go by the wayside. Once again, I am going to try really hard to to do what needs to be done to give us the best chances of health. Maybe it will stick this time because it has become about my kids much more than about me. So onto the day and what we learned. Sorry if my posts here are long but I so desire to give you as much information as possible. If anything I say here is helpful to one person than it really does make it worth it. Grab a cup of organic coffee, with stevia and a splash of almond milk and settle in for a read.

This morning started out with a CRT for myself and my 8 yr old daughter Jenna. My daughter did great during the test just like I knew she would. Next we went in to see the doctor and go over the results of the CRT's and then have the BRS(bio resonance scanning) for us and my 5 yr old daughter Brooke. Starting with me made the most sense. We reviewed how I had been feeling, what I was currently taking, etc...I admitted I screwed up and stopped taking my remedies a few weeks too early by mistake. I could tell than he wasn't thrilled but we were going to get through it. It may have been a blessing because my body actually tested that it didn't want to of the remedies anymore so that was good. Anyways, my CRT test didn't show a huge improvement but it is obvious by how I feel that things are improving. A lot of what I am dealing with may take 6 months to a year to clear up so that would make sense. In the overall numbers my inflammation dropped from a 4.5 to a 3. (0 is best 6 is worst) I will take any improvements I can get. Then when it came to vitality it went from 1.3 to 1.7. My body was functioning at about 40% at the 1.3 mark so again some improvement. When it came to specific areas there was not much change either. My thyroid is actually worse so I need to have it checked and may need to go back on thyroid medication that I had stopped in January. Hope to know a little more by Wednesday but will still need to have it checked. The biggest deal on my test was the fact that my head issues had not improved. This really confirms for the doctor that I am dealing with CCSVI. (chronic cerebrospinal venous insufficiency) Basically it is believed to be comprimised blood flow in the veins draining the central nervous system. The fact that I am having some lymphatic drainage issues in the areas at the base of the neck further supports the doctors suspicions. This is something they are finding in MS patients. Interestingly enough a lot of MS patients are testing positive for Lyme. (So if I could for one minute just say I don't blame Lyme for everything but the reality is many conditions appear to be caused by Lyme. Many of the conditions of really just a name for a group of symptoms like Fibromyalgia where as some of the other conditions may be actually illnessed or diseases them selves. I just encourage you to do your own research is you are facing a symptoms or have been labeled with a condition that may not make sense or has no known cause. Lyme has been associated with things like...Fibro, chronic fatigue, MS, alzheimers, parkinsons, arthritis, autisim, bi-polar just to name a few. Everything has a cause. Just saying. Enough of the lecture)

So what does CCSVI mean for me. One is the doctor believes this may be a big road block for me if it is not addressed and that would be sooner rather than later. Second I need to go get a MRI and Ultrasound to determine if this is definitely an issue for me. Being that this is a fairly new condition I am limited on the places that are familiar with it. The place that the Hansa Center works with regularly to address this issue is in Las Vegas. The imaging alone is about $3200 if your insurance won't cover it. Which I am guessing they won't but we will see. If the images show blockages you basically have to have something like angioplasty to open things up. That brings up a whole other world of issues...it is not guarenteed to fix things. You may not feel better even if it does fix things. You may "re-stenous" which means things block back up and then what. Factor in the risk and the cost of the procedure and well, this is going to be a big thing for us to deal with. Bottom line, I feel right now I need to try and proceed with the imaging and then go from there. In some cases it is genetic and something is malformed causing the issues. (Doc said this may be an issue in my case since Jennas test is leaning that way but they don't usually go down this road with kids. It could be other factors at this point for her) It could also be caused by some type of cervical impingement and fixed with some chiropractic type therapy. Either way surgery or other would involve me coming back to Hansa to continue addressing the issues and seeing what happens when that issue is taken care of. For some people, it is a huge turning point and they really improve after this. So bottom line is we have lots to think about. That covers the basics of me today. As far as the rest of my testing went with the BRS- my Lyme is definitely improving. I still have the ammonia in the brain(which is the main toxin released by the Lyme bacteria) but there was definite improvements. Started some new remedies to deal with the neurotoxin issues, the viruses which are major for me, and iodine for the ammonia I believe. Anyways I am excited to get back up and going and see some more improvements.

Now to what really matters- my girls. Brooke did really good with the doctor. In summary she has major digestive issues which I kind of figured. If you remember the top 10 list from last time Brooke only had a top six issues from each area. Children and healthy adults don't usually have 10 areas. For people with significant problems we have more than 10 but that is where they stop testing. Have to start somewhere. At least there is an end point for Brooke. From biggest issue to least her organs were- colon-stomach-thyroid-pituitary-pineal-hypothalamus and chemical/nutritional issues were metabolic-virus-lipid metabolism-yeast-allergies-hormones. Can't say all that means yet but should know more over the next two days. The hormone issue stuck out to the doctor and this is where the diet has got to change. Her hormone issues are stemming from the crap in our diets. So completely organic and hormone free meat and dairy or going dairy free is a must. What a wake up call. Dr. J believes Brooke has yeast in her colon so going to deal with that and forward we go. He also believes she may have some neurotransmitter issues contributing to her mood swings. She is also indicating stress on her autonomic nervous system. I believe it could be internal (illness type stressors) but it can definitely be external stress. Another huge wake up call. My 5 yr old and 8 yr old both are suffering from stress related issues. If these aren't indicators of how out of whack our world has gotten I don't know what is. The good news is although the doctor believes Brooke is carrying the Lyme bacteria she got in the womb she has no indications it has activated in her system. Lets hope with what we are doing here and the changes we make going forward her little can keep it in check and she never has problems. She does have some cranial fixations which may be affecting sinuses and some pelvic misalignments both of which we will deal with in the next two days.

My Jenna also has the cranial fixations which may be causing her more recent episodes of dizziness and pelvic misalignments. She has the indicators for stress on her autonomic nervous system too. She was indicating for a remedy that would help people who had gotten sick and not recovered properly. That is some big news for us. Jenna was born 9 lbs 4 oz to everyones surprise. By about 7 or 8 months old she was 18 lbs. She then got violently sick with rotavirus which caused her to end up in the hospital dehydrated and to have lost almost 4 lbs in a week. She has had ongoing stomach trouble and at almost 9 yrs old she weighs only 53 lbs. I am hoping we really begin to make some improvements in this area. Her top list of issues was as follows for organs adrenals-stomach-colon-heart-pituitary-pineal-hypothalamus-bladder. and chemical/nutritional were toxicity-bacteria-virus-hormones-allergy. She too has an end in site. The heart does concern me and they did pick up an arrhythmia which her pediatrician has also picked up but the Dr. J says he believes it may only come on  in response to what her body is going through at any given time.  The biggest news of the day was that Jenna is showing active Lyme as she has substantial quantities of ammonia in her brain as well. The bugs have started their cycle and are dying off releasing toxins into her little body. I almost cried when I heard the news but not because of what you would have thought. I am so thankful to God that we found out. My little girl stands a good chance to deal with this now and be done. No invasive antibiotics but getting her body to get back on top before it looses all control. I see myself in her at this age struggling with staying focused, being organized, remembering my homework.  Those same struggles in me were joke about lovingly in my nick name "Jessica Marie, tie your shoes, forgetful, Dlugos. I was a little bit of a walking disaster who always forgot things and well no one knew it wasn't just part of me. My body was being taken over slowly by these stupid bugs and their toxic waste and I was left fighting to get my life back. My little girl won't have to suffer the way I did. I couldn't feel more blessed. I am a little in shock and realize we may have some work ahead of us but we will overcome this. Dr. J believes her number one issue of toxicity is probably the ammonia and her body actually said it wanted the organs dealt with first. He does believe she may somewhat of a leaky gut and her allergies are really systemic reactions to what is leaking out. I can't wait for tomorrow so we can really get moving on these issues and hopefully start to see some improvements. Lots of questions to ask and things to figure out but feeling good about the direction we have chosen to go. I so desperately wish my husband was with me to help go through this and make sure we are doing whatever we can for our girls. I don't believe though this will be the last time we will be here though. So glad God has this under control. We couldn't face this battle without him. 

Now off to bed for some much needed sleep. Can't wait to share our exciting day tomorrow. Thanks for the prayers and support. Love you all.

Second Chance

My life may not be going the way I planned it, but it is going EXACTLY the way God planned it.


My husband and another dad took the kids out for dinner and a movie so I have the evening to myself. You would think I would be doing something much more exciting than this but the truth is I don't feel very good and wasn't up to going any where. I also realized it had been quite a while since I wrote an update and I figured there was not better time than this. My life has been really busy and I haven't had much down time. I have to say that is a good thing. I am amazed at how quickly I could forget how sick I was. In some ways I think it is a good think. However, it does create some issues with not over doing it. In my opinion my energy is still horrible and I still wake up tired not matter how well I slept. (I am sleeping much better by the way) I try and remind myself though, that I am doing much more than I was 6 months or certainly a year ago. So my energy is better but I know I still have a long way to go. If I could only have that bouncing of the wall feeling a few days a week that would be great.

Overall, I have done fairly well since coming back from the Hansa Center. I have not had any seizure episodes. My muscle spasms are 95% better. My pain has been almost non-existent and my brain function has improved somewhat. I had a little reality check though this past week with some joint and muscle pain, poor brain function, heart issues, etc...It has been a little frustrating but I can't really complain. It is interesting that this has been happening during the full moon and solar flares that have been happening. It seems really consistent among most of us with Lyme at least that feel worse during the full moon. I am hoping that is all it is. I got my new herbal remedy for this horrible allergies I have been having. Within 3 doses my symptoms had improved dramatically but they have come back. It seems like taking the remedy things clear up fairly quickly for a little bit but they come back within a few hours. Hoping we can get them under control soon.

As far as my treatment goes...my doctor here in San Diego had wanted my to start back up on the light therapy a few weeks ago. I am holding off for at least a little while more. That treatment is not cheap and I don't have any measurable results. That makes it hard to know if it is working. I have continued with acupuncture fairly regularly and am doing my epsom salt baths and the sauna. I will admit I am not doing the sauna nearly enough so I am trying to get up and do it first thing every morning. I did reach my 60 day mark since starting my remedies so I have stopped them. So other than my heart medication, the remedy for allergies, vit d, and one other pill I don't take anything. To go from almost 50 pills a day  and IV's to this is amazing. It is really evidence as to how far I have come. I am hoping to redo some of my blood tests, like my CD 57 to see what they are indicating within the next month or so.

The really good news is I am going back to Hansa in a little more than a week. Although I only get to stay for 3 days I am really excited to get a tune up and see how much I have improved and what else we can tune up. The best news is I am taking both of my girls. Although my husband doesn't get to go I can't wait to find out what they see in my girls and what we can do to get them on the right track. It is a total blessing that my friends from when I went in January will be there at the same time. I can't even say how much I have missed them. Plus, they are helping me with the girls while I am in treatment.  You can bet I am going to blog about that whole experience when we go.

I feel like I have so much more to tell you but I guess it will have to wait for another time. If you wouldn't mind praying for our trip which is March 18-21. Please pray for safety, answers and improvements for myself, Jenna and Brooke. Also please pray for our financial situation and some big decisions we have coming up. God is continuing to bless us and it will be exciting to share all of the details of my photography venture and what God is doing over the next few months. As always, thank you for your continued support, kind words and prayers. I will try to get back to blogging more often so you know what is going on and where I am on this crazy journey called life.

Finding Balance

I apologize for the long break since my last update. In reality, I haven't had much down time and I guess that is a sign right there that things have improved somewhat. Unfortunately I don't have much time now either so this update may be brief. I promise to give a proper update soon. Overall the improvements I had made since going to Kansas have held pretty steady. I don't have the energy I want and need yet but I guess the fact that I have been so busy means it is better than it was. Since I had a few days here and there where I was bouncing off the walls I guess I desire that everyday. At a minimum I know I can have more energy than I do.    My pain is definitely less. I don't have pain very often anymore and when I do it is milder than it was. My temperature issues are somewhat better, my seizure type stuff is better and my heart may be even a little better. So overall I have held onto some improvements but don't feel much better than I did 3 weeks ago. There is one thing that has been really bad but I do take it as a sign of overall improvement...my hayfever is out of control. I have had some bad allergies before but it has been probably mid to late nineties since they have been this intense. They have never lasted this long. They are intense everyday and have been for about 3 to 4 weeks. It would be really interesting to see where allergies show up on my top ten list now since they were number 10 when I had gone to Kansas. I finally decided to try a remedy from Hansa to see if it helps. Hopefully it will be here this week and I can get some relief. I had one little flare up about a week and a half ago that was a little strange. I was really having an amazing day or few days I should say. Then out of the blue I got sad and super depressed over that matter of a few hours. I wanted to crawl under the covers and be left alone. Some of my physical symptoms came back also. My feet got really cold, I had some pain and was sick to my stomach. What that was all about I don't know for sure but it did clear up. I am still learning to find my balance as I still have the ability to over do it. When you start feeling better you want to run out and try to make up for lost time and I catch myself paying for that every now. I just have to remember to take my remedies, get enough rest, and keep on my detox and diet.

God has really blessed my family and continued to take care of us this past month. I really feel like God has confirmed the direction we are going and I am working on continuing to trust Him to meet all of our needs. I have definitely has some ups and downs. I realize though that those down moments come from trusting man and not God. There are some big decisions in our future and I am excited to see where God will take us and how He will continue to provide for us.

One of those big decisions is  about going back to Hansa. My goal was to go back here in the next few weeks, with my husband and two girls. There is a good chance my husband can't go which make me sad but it is a must that I take my girls. My youngest is having increasing complaints of pain and stomach problems and I just want to go and get them back on track to healing whatever the reason. Of course money is always the big factor. I need a fourth person to go if my husband can't because my girls need to be watched while I am in treatment. When I looked at air fair it would cost us like 1500 for all 4 of us to fly.  That does make it cheaper to drive even with fuel being closer to 5 dollars a gallon. How we will pull this off I am not sure but I have an urgency about going back. I want to continue to heal and get my girls well on their way to healing as well. I would rather postpone starting light therapy again as that is not cheap and go back to Hansa again first. Lots to figure out in the next few days.

I wish I had time to tell you more but that is about all I can say right now. Please continue to pray for me and family and our upcoming big decisions. Oh and one last request,please look up Surf Chaser Photography and like my page on Facebook. Then share it with all of your friends. The future looks exciting and I can't wait to share more over the next few weeks.

Hansa Day 6- Tired and Wired

It's late and I need to get some sleep so I am going to try and make this short. Well short for me anyways. I have had a horrible time with insomnia. Compared to some of my friends my trouble sleeping is nothing but it has definitely been rough the past few nights. I am sure I didn't get to bed before midnight the last three nights, I guess it would 4 counting tonight. In fact I didn't go to sleep until about 2:30 this morning. It is driving me nuts. Once I am asleep though, I do seem to be sleeping better than normal. Needless to say I was tired today. At least my day ended early so I go almost a 2 hr. nap. This week is much busier than last and the owner/head doctor is in this week. I am hoping I get a chance to chat with him even if its for a minute.

I started this morning off by seeing the doctor. He did some minor work with the percussor on my upper back and neck area. Then we went into something called bio coherence. Basically it involved the BRS to see first if my cells were able to communicate and second if there were speaking the same language. That uncovered a lot of messed up stuff. I took a one time homeopathic remedy and he proceeded to make me another remedy to add to my list. This one however I will not refill. Once my bottle is gone, I will be done. Because of some energy level stuff Dr. J wanted me to increase the one pill I take from once a day to twice a day. No big deal. Once we finished with the bio coherence we went on to some emotional stuff. I honestly forgot what they call this but they are a couple of things they will be looking at today we used flower essence to check for emotional things. The four or five emotional issues that came forward were pretty interesting and I guess looking back tonight I see how they were right on. Those emotional issues were playing a part in my bodies ability to heal. Bringing those to the surface added some more things to my new remedy so it now contained 13 different things in one bottle. The cool thing was, after we got that cleared up, I no longer needed to take those additional pills. Dr. J said there was some clearing out in my adrenals and hopefully this will help the energy/vitality stuff. I feel like my body is cooperating pretty well with the plan and things are moving along fairly well. That makes me happy of course. As far as the emotional things go, I may or may not feel anything. So two things happened after seeing the doctor. I was super tired and yawning a lot but at the same time I felt wired for a little bit. Some of the treatments that usually put me to sleep or almost to sleep I could not rest. So kind of weird to be tired and wired and at the same time. But maybe that is a sign of things to come. Then during my massage, it was also hard to relax and I was thinking of some random and not so great stuff. I realized that this was probably a release from the emotional stuff. It was all starting to make sense. It was kind  of enlightening. I do some things to deal with or let go off. Hopefully this new remedy will help.

To end with I want to go over my top 20 list of problems. This is what I mentioned I was going to ask the doctor to go over with me from my first day. It is actually two top 10 lists. I will just run down the lists and will probably have more information on it later on in the weak. Oh and before I forget my massage therapist said her type of massage is called "custom"...she uses all the techniques as I need. Her suggestion is to go the schools when I get back and want a massage. They will be trained in it all and I will be good practice for them and they are cheaper. Good idea. Ok back to the lists.

Top 10 organs in order of most important to least (again this is what the body revealed to the doctor on the first day in the BRS)
1. Adrenals 2. Spleen 3. Liver 4. Heart 5. Ovaries 6. Pituitary 7. Pineal 8. Hypo-thalmus 9. Thyroid 10. Bladder

Top 10 chemical/nutritional issues body revealed in order of most to least important
1. Virus (things like EBV, HHV6, and my pneumonia's) 2. Bacteria (Lyme, etc) 3. Deficiency (I am deficient in something...could be the Vit d) 4. Toxicity 5. Hormones (Interesting that ovaries and hormones are both number 5) 6. Enzymes 7. Metabolic (absorption) 8. Yeast 9. Fungus 10. Allergies

So that is it for tonight. Now to try and go to sleep in the next hour or so. At least I don't have to get up to early. I don't go in until 10 and don't even see the doctor until 4 so tomorrow will be a late day. Thanks for following along on my journey. Keep the prayers coming.

17 Days and Counting

I knew I was behind on an update but I didn't realize it had been a month. A lot has gone on in the past few weeks. Where to begin...Well I took the leap of faith and started acupuncture. I can't tell you how happy I am that I did. I was so nervous going to that first appointment. I still get anxious when they are going draw blood or access my port. So of course the thought of having even needle stuck in some odd place was going to cause a little anxiety. Before I went in I filled out my health history. I was surprised at the amount of detailed information I had to give. I gave the acupuncturist more information than I had ever given any doctor. It was actually somewhat comforting. I brought that with me to my first appointment and we reviewed it before we did anything. I guess while I was on my antibiotic break, this guy had started working at my doctors office doing some pain management type work. We had had a chance to talk a few times before my visit so he knew how apprehensive I was and he already knew I had Lyme. After reviewing my history he checked my pulse and a few other things. Of course with being nervous my pulse was really high. The first thing he did was called cupping. I had heard of it but didn't really know what it was. It involved placing briefly heating up these glass bowls or cups and placing them quickly on my back which created a suction. You leave them on there for 5 or 10 minutes and then take them off. They are supposed to help release the stagnant blood and I believe increase circulation. He told me he knew I would bruise easily so don't be surprised it I had some marks. I did have these big circular almost hickey looking marks all over my back. They didn't hurt though. This procedure was also supposed to help with some of the tension in my shoulders and neck. I have done it on all of my visits except this last one and it has really helped a lot. After the cupping we did some needles. He made sure I was comfortable and didn't do to many because he didn't want to overwhelm me. It was nothing like I had thought and wasn't bad. He told me I would know in probably my first visit if this was for me or not. I was quickly a fan and am still going once a week. I don't know how other practitioners work but as long as he is around I won't see anybody else. His knowledge is amazing and it is evident that he wants you to get a lot out of your experience. He reviews how you are doing before starting, during, and after and makes adjustments as needed. I can say enough about what I positive experience this has been. So for all you San Diego people here is a shout out to Michael at Eight Wave Health in Encinitas. I highly recommend seeing him. He has helped with my diet, and overall healthy living. He has helped reduce my pain and is working on a couple of other issues as well. I couldn't be happier that I gave it a try!

Along with the acupuncture, I continued with the light therapy. I completed 6 treatments over about 3 weeks. I have doing okay symptom wise but I haven't had any significant breakthroughs. At the end of 6 treatments I had an appointment with the doctor to see how he wanted me to continue. He decided instead of taking a break and doing six more that he would start treating me with another type of light therapy. So yesterday I did my first treatment with the new machine. Now this one is different and is administered by the doctor or nurse. There are no glass bottles taped to me. This machine uses coherent and in-coherent light. I can't explain to you the science behind it but there is a lot of positive feed back about this kind of treatment. It is even safe for kids. It can even be used to counteract the bad stuff from vaccinations. I am really hopeful about this. One of the first things we treated with this were all of my scars and my neck from whiplash I've had once or twice. Then we treated some of my viruses, the vaccinations I have had, etc. We will begin focusing on the lyme in future treatments. I haven't been feeling great so it is hard to say weather today is because of the light therapy or something else.

In regards to how I have been feeling. I was thinking I was back to about where I was before treatment but it appears I am not even that far yet. And that isn't my goal. I need to be much better than I was before treatment to really feel like I have gotten somewhere. If you could take me back to when I was about 20, it would tolerable. But realizing that i have been sick for so long, what I felt at 20 wasn't right either. I don't really have an idea of what healthy feels like. I know now the things that bothered me then were signs of a problem even though no doctor would agree to that at the time. I am really set on getting healthy and staying that way. As I was saying, I have been doing okay. I have made some changes in my diet and have lost about 4 pounds. So that makes me happy. I had a little bit of pain and all during my cycle but nothing extreme. Then all of sudden for almost the last week I have been going down hill. I have had some pain, a ton of palpitations and heart racing episodes. I have had some dizzy spells and extra fatigue. In fact Tuesday night I had the worst creepy crawly, weak feeling in my arms and legs that I have ever had. It kept me up most of the night and I was so ready to cut my legs off at the knees and my arms off at the elbow or maybe even the shoulder. That feeling has stuck around since then but is not as intense. I'm getting transient bone pain and muscle aches. I have been muscle spasms at some place on body probably everyday for almost a month. So needless to say I am a little frustrated. I can't say what the cause is since it seems to be out of the blue. A flare, a herx, reactivation of a virus I have no idea. I guess it just a reminder I'm not done yet. I'm sure the stress surrounding the holidays, money, my trips arent' helping. I never know if stress caused it but I certainly know when you feel like this you get more stressed. Such a vicious cycle this is.

Onto something a little happier. I am officially going to Kansas. I fly to Wichita on January 1st and begin treatment January 2nd. I have been in contact with a girl who a has recently gone and has had great results. That gives me a lot of hope and I am so excited to go.The great thing is, some of what my doctor is doing here with the light therapy seems directly in line with what they do at Hansa. My hope is that for the two weeks I am gone, I get a great jump start on restoring my health so that when I come back we can finish up. I get to stay in a nice hotel where all of the rooms are kind of like studio apartments. I have a full kitchen and all so this will a nice retreat to really focus on my healing. I can't say I won't be lonely and somewhat distracted by leaving my family behind. However, I believe that this is where I am supposed be and it will be worth it if I can come back feeling better. I will doing my best to update regularly when I am back there. I will at definitely keep a journal so I can always blog about it later if I need too. I am trusting God that this is right thing to do and that not only will he take care of my family while I am gone, but that he will continue to provide for us financially. Between the light therapy, acupuncture, and this trip the available funds for treatment will be down to nothing. God has provided for us this far and I believe he will continue to do so. In His time, according to His plan and will for my life.

To end on a happy note, I have a new excitement and passion for what the future holds. In fact, I even signed up for a college class for next semester. I am ready to put in the effort to make my dreams a reality. If I don't get to update before I leave I pray you all have a very Merry Christmas and a Happy New Year.

You can continue to support me and my family by praying, by buying some of photography, or by making a donation to help pay for treatment. You can now donate directly to a donation account at US Bank. Just tell them you would like to make a deposit to the Jessica Madson Donation Account and give them account number 153466674998. Thanks for following along on my journey and for all of your support.

The gas tank is getting low

"I don't need easy, I just need possible"- Bethany Hamilton, Soul Surfer

This is beginning to feel like the longest road trip ever. Although I am still fairly content to be riding shotgun I am finding hard to not point out to the driver that the gas tank is getting low. I am sure the driver(Jesus) is checking the gauges and knows the gas tank(me) is getting low on fuel. There are just some days that I get a little down and just think I can't continue doing this. I was in this frame of mind just a few days ago. Here I was thinking about how I was having a "good day", meaning not really feeling sick but after being out about half of the day I was so exhausted I felt like I could have slept for days. So even on my good days, the tiredness and fatigue sets in and becomes overwhelming. I just thought I can't imagine having to live the rest of my life feeling this tired. I may be able to deal with some of the pain better than I could the fatigue. For me fatigue just takes the joy out of anything I am doing. It takes so much effort to do something it makes everything a chore. So frustrating to say the least.

With summer break coming to an end and me being back at work part time, I have also been feeling like I just don't have time for anything. I don't have time to be sick, to be a mom, to be at work...my life doesn't have time for life. My treatment and taking care of myself start to suffer a little when I am at work and things are busy. I get easily overwhelmed with how much there is to do. I don't have a clue how I survived as long as I did being sick while working full time and doing everything else. I am not ready yet to throw in the towel though. I don't think I will ever be ready to quit work because I know my family needs the money. However, this is part of me giving up control. This work issue is out of my hands as I see it. I am caught between the doctor, this disease, and the City. The end of 30 days is approaching. I see the doctor Thursday and I guess will be getting another note from him. Just as I suspected, nothing has changed in the last 30 days. I definitely have not improved but on the flip side I have not regressed like I thought I might. I have had some change in symptoms but I have managed okay. I will say I have had to take some time off for having a bad herx or two but otherwise have maintained okay.

I did have a really bad but short lived "twitching"episode last night. Come to find out, a  number of people consider those episodes seizures. I never did because I never lost consciousness during them. I know exactly whats going on even if I can't respond. Either way, I hate it when it happens but we get through them each and every time. My pain has been up a little. More muscle pain and weakness, less joint pain. I am starting to realize that my muscles are finally starting to get extremely weak. I really need to get back to the gym and do some weight training. It really hit me when I could barely get a gallon of milk out of the fridge. A little scary but I know I just need to work my muscles. The heart has kind of been the same. Trying to focus on some of the meditation exercises, although I haven't done them everyday. I still get my butt kicked with minimal exertion. I am having more palpitations and dizzy or "drunk" feeling episodes. It is so weird to feel like your heart is racing and beating out of your chest and the rate is normal. I have a bunch of blood work to get in for the cardiologist at some point. I need to do it mid day though so they can adequately measure the level of my one heart med. Then we will know whether or not we can increase it, I guess. The crepiditis in my joints is out of control. They all sound horrible but at least some of the pain is down for now.

The sauna is awesome. It is fairly relaxing when I am in it but certainly kicks my butt later. (I think everything is kicking my butt...haha) I am trying to take Chlorella before and after. It is an algae and is supposed to absorb some of the toxins. Working again on my diet. Trying to just make so small lasting changes. I don't know how anyone can go on these crazy healthy diets, some of which are so restrictive. My problem is I want instant results. I know its not going to happen but in my world, if I went a day without junk than I want to feel a noticeable difference. Not this, I have gone 3 weeks without gluten, dairy, and sugar and I think I might feel a tiny bit better. Sorry, it's just how I am. I am trying though (again). Sugar is the big one for me I think. Gluten would be next. So, just working on one little thing at a time. It's lame because sugar is in everything! Sooner or later I will get there. Maybe my one doc is right, if I just work on adding things, that will be easier than taking things away. I have been working on adding my protein shake but I haven't been a 100%. Now maybe I will focus on adding a veggie juice in. Hopefully if I keep adding in the healthy things the bad things will have to go because there just won't be room for them. I like that idea.

God has continued to provide for us financially. Like I said last time, my husband and I feel like God is doing some work behind the scenes we just aren't at a point of sharing yet. I am still excited to see where He is leading us. I am glad I go to the doctor on Thursday so I can discuss our outstanding medical bill. I just opened another one and it had gone up by over $400 dollars so I guess we owe about $1750 to catch up. It almost looks like the insurance stopped paying sooner than I thought. Not cool but we will get through it. I think the doctors office will work with us on payments. I am just hoping to try and get this resolved before it all starts again in a month. Either way, I feel blessed that between my family, my parents, and due to some awesome friends we have made it this far. The only treatment things I have turned down at this point due to money have been hbot and going to the Klinek and Germany. I feel very blessed to have gotten my IV this long and every other med the doc has wanted.

Well my brain is starting to get a little lost so I guess I should end this update for now. Please continue to keep us in your thoughts and prayers. I have another small medical concern that I have to address with the doctor and I could use some extra prayers for that. I will probably post an update later this week depending on what the doctor says or if anything new comes up. I am going to try and add some more photos to my website so don't forget to check it out. If you are blessed financially and want to help us cover my medical expenses you can also do that through my donation page. There is a chance we maybe able to do a local fundraiser to help out, and if that works out I will certainly let you know. Thanks again for all your support. I hope and pray you are all doing well.

Detox is the key

I guess it is about time I post an update. It has been a few weeks and I just haven't been able to get around to it. Well, there was a time or two I could have but it just so happened that my brain was not cooperating at that moment. So today I guess the stars have aligned and I feel well enough and have the time to complete this task. The one thing I am really bad about with my blog is going back and reading my past posts. I apologize in advance for repeating things a bunch of times but rereading my last few posts each time would just make me tired and then I would never get around to a new post. Of course I am now wondering where to begin...

Let me start with my appointment with my llnd. In the past I have usually done phone appointments because it was just easier. My doc just moved to NY and opened a new office in Connecticut so she isn't in her San Diego office as much (a week or two a month) and it is kind of a drive. This time though, I decided to go in and see her. If I am totally honest, I really wanted to meet her new puppy and office dog, Harry Winston. I believe he is a Kingsley and he is so cute. He is from Australia just like my doc. Back to the visit- it was good to see her in person. We typically go over current meds, supplements, and symptoms and figure out what to do. This time though I had to ask what supplements were crucial and what were negotiable or could I get a generic brand of. I am spending about 400 dollars a month on her supplements alone so if I could reduce that price it would helpful. We decided I could make a few changes but they may have cancelled each other out. I can stop taking the teasel root and the CogniCare but I added in a herbal detox formula. I also added in liquid glutathione but I haven't started it yet. My doc also gave me so diatamacous earth (I know I probably spelled it wrong). She had just gotten a big bag in that she was going to try so she sent me home with some for free. I haven't tried that yet either. Just taking it one thing at a time. I would really like to keep at least monthly appointments with her it $125 a visit. I just can't pull that off. My family is already trying to come up with $1000+ a month. I know for some people that is on the low end but in any case most people don't have that kind of extra money every month. Let alone the fact that we are still short over 50% of my income. I just squeeze her in every couple of months, which has worked so far but I do wish it could be more.

After reviewing all of my symptoms and everything it was decided that we are probably doing enough bug killing but not enough to help me detox. That of course would be why I started on the detox formula. We talked about my diet which I admitted sucks. She said, lets not focus on taking things away then. Lets focus on adding them in. First thing I was asked to do consistently is have a protein shake. So far, I have been fairly consistent. I also came up with a new recipe that I absolutely love. The real test of it will be later today because I just got my chocolate protein powder but here is what I have been doing. I love my coffee in the morning, even though it is decaf. I always have some type of mocha and I was usually buying them and not making them myself. I began wondering if I could make a protein mocha and lets just say it is my new favorite drink. One of the things I have mentioned before I am supposed to do is cut out sugar, which has been fairly impossible. In some of my research, including that primal diet my other doc suggested, I found out about heavy cream. It is a wonderful thing. Rich and creamy with no sugar. If I cut out the sugar as much as possible and reduce some of the carbs the fat is not supposed to be an issue. This gave me the idea for my iced protein mocha. I make extra strong decaf coffee especially if I don't have time to let it cool down and a few tablespoons of heavy cream and protein powder. Shake it up and pour it over ice. Now I get my protein and my coffee all at once. I will admit I had to finish my vanilla powder so I was adding some Hershey's which wasn't reducing the sugar. With the new chocolate whey protein powder I should be getting about 20 grams of protein and only 1 gram of sugar. I was originally also adding non fat plain greek yogurt but that bite of the yogurt wasn't so good. I highly encourage you to try it.

Sorry I got a little off topic. I tend to get long winded when I haven't updated in a while. Back to detox. I have looked at other things that are supposed to help with detox and long story short I am trying to get one of the Far Infrared Saunas. I know a few people who have the portable tent or tube type and they seem to work just fine. I am not saying I wouldn't do one of those but my parents are looking at the big ones. I mean it is a one person one but is made or cedar or hemlock, has music, and air purifier, and light therapy. It was perfect timing with our big county fair that was just here. There was a company there selling them and I am praying my parents are able to pull off getting me one. The cool thing is the whole family (except the kids) can use them and benefit. I llnd highly recommends them and so does my other doc. I have used on a couple times and they are amazing. So we will see. If you haven't read up on them I highly encourage you to do so. You can just look up FIR Saunas and you will find a bunch of great info. It actually looked like I might get one before the fair left town but in looking at them my dad became concerned over the mention of certain heart patients not using them. I tried to reassure him I was good to go  but he wanted me to triple check. Since I was going to see this new cardiologist he said he wanted to wait and see what he said. So I checked and he didnt' care. So bottom line, bug killing will continue and the main focus will be detox. I do see my other doc this coming week and will get an update from him as well.

Sorry this post is so long but a lot has gone on and I want to catch up as best as I can. So I did go see a new cardiologist yesterday. This doc was recommended by a fellow lymie and is at least lyme friendly. Now have covered a lot of my heart stuff before but to recap as quick as I can...I have had a high resting heart rate for quite a while but it was never bothersome until the last 5 years or so. I started having major palpitations, tightness in my chest, and be short of breath after climbing one flight of stairs. We started a physical fitness program at work through a grant we got and it was during my first stress test that I knew there was a problem. I failed miserably, being short of breath and having my heart rate be at about 217 less then 7 minutes into walking up hill on the treadmill. Started seeing a cardiologist and wearing monitors and running tests. Must be inappropriate sinus tach. We decided to do nothing that first year. Next year and I get on the treadmill again only to have to stop about 6 minutes in with severe left sided chest pain and a heart rate of 272. You read right 272 beats per minute. I ended up getting an ambulance ride to the ER when a few hours later my heart rate was still 150. Saw an electrophysiologist (cardiac electrician) and again IST was the diagnosis. It won't kill me. Don't worry about it. Here is some beta blockers go on your way. The beta blockers have helped a little because my resting heart rate is below 100. I still have sporadic episodes where it jumps to over 200 and I'm not even on a treadmill or it goes from 95 to 140 after climbing one fight of stairs. Probably the most bothersome thing I have been having to deal with. Well knowing that heart failure is the second leading cause of death in lymies only behind suicide I wanted another opinion. I already had seen a different cardiologist who is the head at one of the local hospitals and he said I don't have lyme and this is all anxiety and depression. Obviously I didn't go see him anymore. The infectious disease doctor I say even said she believed I had Lyme Carditis which is the prime reason I needed to do the IV's. So I got this referral and was pleased with my appointment yesterday. This doc did admit that he only knew of Lyme causing heart blockage but he would look into it. Bottom line is, things are still not working as they should. My resting heart rate of 50 mg of Toprol is usually 88 but I don't think I have ever seen it go below 80. During one of my monitor tests the lowest it ever went when I believe I was sleeping was 68. The game plan this doc suggested was add a second heart medication. If that doesn't help I will add a third. Just I want more meds. I think this second one is still a beta blocker. The third one would be a calcium channel blocker. He also gave me a prescription for a med called Rhytmix or something along those lines that I can take during an episode. He told me to try and stay out of the ER ( I couldn't agree more) and just pop two of these pills during an episode where I can't control my heart rate. I back in about 2 weeks for an echocardiogram and the following week for another stress test. At least he is pursing trying to fix it. I do believe there is some possibility of a pace maker in my future. We will see how this goes.

I guess that is about it. I will be totally shocked if anyone has made to the end of this post but thanks if you have. Don't forget to help me cover the cost of my treatment by donating to fundraising site or buying some of photos. Thanks for the support. Prayers are always appreicated and comments are always welcome.