Check Engine Light

Happy New Year. It has been a lot longer since I last posted than I thought. Reality is I'm not sure much is different. In fact in some ways I'm feeling almost like I did when I started this whole thing. I guess after unintentionally taking a break from everything I'm ready to get back at it. I'm praying that 2015 is truly the year I can put this illness to rest at least for a while. 

Not that long ago, I was having a moment of frustration over how bad I was feeling. I kept thinking there has to be something we are missing, I actually still kind of feel that way today. While there are so many similarities in my case to many others I have met there are also some definite differences with me and I haven't quite found what the missing piece is. I usually think that being different and your own person is a good thing, but in this case it's starting to drive me a little crazy. I have heard so many times how my symptoms or issues don't seem to fit the box. Let me tell you this is one area of my life where I don't want to be special. So back to feeling like we had to missing something...the thought popped into my head how much my body is like a car whose check engine light is constantly coming on but no mechanic can seem to find the problem. My body starts acting up and I know its time for another doctors appointment. We go over the problems I'm having and the doctor has an idea and runs some tests. By doing that my bodies check engine light is cleared. Just like the mechanic plugging in the code reader and clearing your check engine light when you bring the car in. You no sooner leave and your check engine light comes back on so what they thought they fixed wasn't the real issue. I leave the doctor, the tests come back normal but the problem continue.

I can honestly say the only symptom I have had any relief from is my burning nerve pain. It is still there on occasion but the not nearly as frequently as it was. The intense weakness and pain in my arms that was one of the main reasons I knew something was wrong it back. I have occasional moments where the words coming out of my mouth are gibberish like I'm having a stroke. My heart has been acting up again and has caused me to almost pass out twice in the past two months. My fatigue continues to be my biggest issue as it is a daily problem and I am back to being in bed a large part of my day fairly often. Bone, joint and muscle pain, brain fog and memory issues, and my uncontrollable muscle movements are all still issues as well. (I'm sure I'm forgetting somethings but you get the picture) I also have been dealing with an increase in intense pelvic pain that has bothered me on and off for years. After multiple tests and doctors visits I was diagnosed with pelvic varices which is varicose vein(s) in the pelvis. I have one very large vein that acts up on the left side but as things go with me the doctor feels that based on my symptoms the procedure to embolize that vein would not provide me with relief so he didn't want to put me through an unnecessary procedure. I also still have my port although it has not been used in a few years.

I didn't really know where else to go for treatment and I am not sure my doctor understood how bad I was still feeling. I knew I needed to let him know that I needed to do something and attack this head on again so I saw him last week. I made it clear that I am sick and tired of being sick and tired. We decided that I would attempt the latest treatment in his office and I knew that in order for me to have a fighting chance of this working I had to address my diet and detoxing  like I never had before. So here is the game plan. 

Number one is putting myself first. I have to say no to things outside of immediate needs for my family. Unfortunately I allowed myself to take on the roll of team mom for Jenna's softball team but I won't allow myself to take on anything else with the exception of doing what I can for some very loved family friends fighting their own health battle. No helping the teacher, going on field trips, not even taking on photography jobs for the moment. It breaks my heart to feel like I'm checking out on life but I know if I don't force myself to do this now, my health is going to eventually do it for me. If that happens, I will be in a very critical situation and I certainly don't want that to happen. 

Second, after much struggle,I am really starting to dial in the diet. I am realistic about the fact that this will be an on going challenge for me but I have finally made some big progress on this front. My gut is a big priority for me. Most of your immune system is in your gut and I know mine is not functioning properly so I have to got to get it healed. 

Next I will be focusing on detoxing with my main goal to use my FIR sauna everyday. I am trying to do this for a couple of weeks prior to starting the bug killing part of my treatment. This is what Hansa in Kansas focuses a lot on and I know it seemed to help when I was there.

 

For bug killing and immune support I will be doing a couple of things. First I am excited to be starting an essential oil protocol. I have slowly been incorporating oils into our families treatment for the everyday cold and flu stuff and can't wait to really start using these to their full potential whenever we can. My doctor doesn't want me on any antibiotics right now which was kind of surprising but I admit I am happy about it. I will also be starting UVL therapy. I am definitely nervous about this as they cant use my port for this treatment and they have to use a fairly large needle. In case you didn't know, needles and spiders are the two things I hate the most. Basically twice a week I will go into my doctors where they will use a 22 gauge needle to access a vein and insert a two inch catheter. A UV light is put in to the catheter (they use UV light for sterilization in a lot of places) and as my entire blood volume passes by that point all of the bad things like viruses and bacteria are killed. My doctor recommended doing the hyperbaric chamber in combination with this but it is quite expensive. In its place I will be riding an exercise bike in a room with high oxygen levels in between treatments.

My daily routine for supplements and meds other than oils is looking like this:

Levothyroxine

Metoprolol

15 mins. of oil pulling with coconut oil

8 oz warm water with lemon (oil or juice)

8 - 12 oz bone broth

2 oz kefir with 1 tsp flax oil and 1 tsp hemp oil 2x a day

magnesium

vit d

kraut or other fermented foods

My latest lab results indicate low Vitamin D (on going issue) and severely impaired immune system. The CD  57 is an immune system marker specifically affected by Lyme Disease. One of the leading authorities on Lyme Disease has said anything above 60 is good for a Lyme patient. However to be in remission with little chance of relapse you should be symptom free and that number should be closer to 200 for a few months. When I first got diagnosed my number was just above 60. Shortly after treatment started my number dropped (which is normal) and the lowest I got was about 27. At one point my number was back up to close to 100. The results I got today have me at a 16. Which is probably one of the reasons I have been feeling so bad. Needless to say I have a lot of work to do and need to fix this before it gets any worse. 

As a side note we are finally getting both of our daughters officially tested and will be treating them accordingly. I will include more on their situation in another post. As always, thank you for checking in and your prayers are always appreciated. I will try and do a better job of keeping things updated when I can. Wishing you all a healthy and happy 2015.

Trust Without Boarders

I love music. I'm not partial to one particular type or even one era. Oldies, country, punk, rock, reggae, instrumental, Christian. Whatever speaks to me. Over the last couple of months the song "Oceans" by Hillsong United has become my anthem or even my prayer. Things seem so confusing that the words of this song are the only thing that really make sense. "Spirit lead me where my trust is without boarders, let me walk upon the waters, where ever You would call me. Take me deeper than my feet could ever wander, and my faith would be made stronger in the presence of my Savior." 

The last couple of years I have struggled to give up control of my circumstances and trust God. Although I have made progress I'm not there yet. I'm not sure I even know where there is but its apparent I have some miles left on this journey. I keep catching myself putting limitations on my trust in God. It's like "Lord I trust you to handle this BUT"...I'm going to do this other thing just in case, the timing of things isn't right, this other idea may be better. The excuse for not trusting is that I am exhausted. Frankly the thought of continuing on like this much longer is just overwhelming. Things are not hopeless just overwhelming.

Unfortunately things with my health have had little improvement since I began treatment in 2010. Some things have improved, others have left and come back, some have gotten worse and even some new symptoms have appeared. I do my best to keep quiet about how I feel on a daily basis because I know it doesn't do me any good to verbalize the negative. Plus if we are being honest, you frankly don't want to hear it. For many of you this may be a shock because what you hear about is the kids, softball, photography and occasional camping trip that make up a lot of my life. These things bring my family and I joy and are required to keep hope alive. They are required so my kids can go through their day to day life with some semblance of normalcy. As of right now I could not hold down a full time job of any sort. My brain function is too diminished  to return to my career in the fire service in any capacity. My physical exhaustion limits a lot of my activity and I'm back to having to take a nap almost everyday. The days I push myself (Disneyland, shooting a couple of softball games, camping) I pay for dearly. That is a choice I make for the benefit of my family and actually for my sanity. 

I am currently still at a loss over what to do next for my treatment. I believe my gut has been destroyed by all of the antibiotics I've taken these past few years, and for that I really need to try and give them a rest for now. My attempt at a big lifestyle change in January with the Daniel Plan was derailed but I am ready to give it another shot. I don't really have a choice. I'm doing as much natural stuff as possible and just trying to get the money together for the next step.

One of the hardest things to deal with has been the health of my children. We are in such an awkward position with trying to get them the help they need while trying to work with in the confines of our insurance. My 10 yr old continues to show some symptoms of Lyme and was recently referred to the cardiologist for an irregular heart beat and dizzy spells. The good news is she has a common sinus arrhythmia and the doctor does not feel we have anything to be concerned about. The bad news is, she still gets these dizzy spells for unknown reasons and the next step would be to see a neurologist. It scares me to think I will most likely be facing the same fight with doctors about my kids that I have faced for years myself. The last thing I want is to be accused of making things up about my kids. Finding the right doctor and being able to afford them is no easy task but my kids deserve to be well. Our younger daughter has been going through a lot the past year. We got a diagnosis of Sensory Processing Disorder about a year ago and have trying to get her some much needed help. After being told by one doctor that she needed occupational therapy, being referred to OT for an evaluation by our pediatrician, and having the head therapist agree that therapy was needed we were just informed OT was denied by our insurance because they don't believe it is medically necessary. In the meantime, my daughter has been having some episodes of nystagmus (eyes moving rapidly back and forth). This has led to a referral to the neuro-opthamologist for an evaluation. That appointment is scheduled for the end of this week. Although there may be no known cause for her nystagmus, she has not had this issue since birth. "Acquired" nystagmus seems to be most commonly caused by medication side effects, injury or disease. She is not on any medication and has had no injury we are aware of so that leaves diseases of the inner ear, a brain tumor or ms as potential causes. (Add a ruptured cyst and broken toe with our one dog the past two weeks and I am just drained.)

This is where I am left praying that I am able to have trust with out boarders, that I am led deeper than my feet could wander and that I can keep my eyes above the waves. This is not the life my dreams were made of as a little girl. But despite the struggles we have been blessed. Praying that we turn the corner sooner rather than later and reminding myself in the mean time that my track record for getting through bad days so far is 100%. I will try to give an update after my daughters appointment this week. Thanks for keeping up with our journey and letting my ramble. 

A New Year, A New Plan

I hope you all had a Merry Christmas and are on your way to having a Happy New Year.  How do you feel about New Year's resolutions? I personally like them or at least the idea. I enjoy reflecting on the past year and thinking about what I want to accomplish in the year to come. Like many people though, my resolutions have never made it very far. I've always allowed something to derail my good intentions and end up with a sense of failure and frustration as the year comes to a close. 

This year is going to be different though. This year I have a new plan. One thing God has been teaching me over the past few years in my battle for my health is that I am not in control. On more than one occasion, God has allowed me to get to a point where I have nothing left I can do but rely on Him. You would think that after just a time or two I would have gotten the message loud and clear. Instead this is a lesson I continue to learn and actually may be learning the rest of my life. See it's been somewhat easy to call out and surrender when I feel like I am literally on deaths door step. But what about when I am battling with procrastination, or not eating the cake, or taking my medication? I realized that I was learning to rely on God for the big things but the little things I took upon myself and when I didn't succeed, I either had a million excuses or a thousand negative things to say about myself and my failure. Here is an example.

I have continued to search for things I could do to help me get well. What haven't I tried? Are there any new treatments out there? Every time I have brought something up my husband has gently reminded me that I haven't done the most basic of things my doctors have instructed me. Things like drink plenty of water, use the sauna daily, take my pills, and most importantly....CHANGE MY DIET! I know many of you probably are probably thinking it is crazy and just plain stupid that I did not do something so seemingly simple that may have made me feel better. Believe me, it is not for lack of trying. I have tried, repeatedly, numerous times a year since my diagnosis and have had no success. The problem is each attempt has been fueled strictly by my own will power. I was not taking the time to give the issue to God, to ask for His power to help me be successful in my attempt. Will power was not my only issue. I struggled with negative self talk and thoughts and knew I needed to changed the way I thought. I was learning more about the mind, body, spirit connection but wanted to make sure that what I was reading wasn't crossing any lines of what the Bible said.

Just about a month ago I heard a little blurb about this thing called The Daniel Plan. I figured I should at least check it out. To my surprise it seemed to be everything I was looking for and needed. A Bible based plan, that focused on the health of the whole body. It basically said my  eating habits, exercise, thoughts, relationships and focus on God were all connected to each other. They all affected each other and success in living a healthier life and becoming the healthiest person I could be was not only my desire but God's desire for me but I had to give up control. 

So here I am with a new year and a new plan. To add to my excitement about the year ahead is the fact that there are some a few promising treatments for Lyme and related conditions that I haven't tried. (It is now really considered MCIDS or multi chronic infectious disease syndrome). Going to Tijuana to have a procedure that heats my blood up to 108 F is one of them, but more on that later. In any case, I am really trying to focus on being positive about putting my illness into remission this year. Even though the research shows I will have this disease forever and I have tried to come to terms with that I have recently realized that is not true. Some day I will have a new residence in heaven and I will no longer be sick. So I am choosing to view my illness and any trial I face for that matter in a new light, and really in the truth that it is temporary. 

The Daniel Plan itself is a 40 day program which will hopefully help build life long habits. I am hoping to do my best to blog about my journey. I definitely encourage you to check out The Daniel Plan if becoming a healthier you is on your list of to do's. If you are doing the plan and would like to join our support group on Facebook for extra encouragement let me know. Here's to a healthy and happy 2014. 

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.

A Big Year Full of Nothing

Happy New Year to those of you I haven't had a chance to wish it to yet. I hope you all had a wonderful Christmas and have had a great start to 2013. Things were a little different for my family over the holidays this year with my mom out of town taking care of my grandma, and my husband working Christmas Day and also getting called back in to work Christmas Eve on an emergency call that lasted all night. (He works for a local water authority) Despite that we still had a great time and had so much to be thankful for. We still do.

Thanksgiving really got me started on a journey of reviewing my life...where my family has been, where we are going, and all that we have been blessed with. I have really been focusing on getting rid of stuff and have gravitated toward the idea of becoming a "minimalist". As I took some time to read up on minimalism and simplistic living it really appealed to me. I made up mind that my big resolution or goal for the new year was to minimize. My family has been easily overcome with stuff. It clutters up our physical space, takes a lot of time and attention to maintain and deal with, and actually clutters up our minds as well. As I have moved from thinking about this new way of living to actually implementing it I can say I see a difference already. I won't pretend the transition will be easy, especially for the kids but I know how much better it will be for my family once we are there. The basic idea behind this concept, at least for my family, is that we reduce the amount of stuff and things so that we have the room, time, and energy for the things that matter most. God-family-others. 

We have been focused more on putting others first. We have all committed to 26 acts random acts of kindness (after the Sandy Hook Elementary shooting), the girls have been involved in various kindness and service projects at school, and I am working on really finding ways I can give back. This has led to a general positive outlook on life. Once again, the response I get from strangers when out in public is amazing. People are friendlier, smiles are exchanged more often and the general feeling is just happier. I was reminded that this was how I felt after first coming back from Kansas just a year ago. Choosing to be positive and focus on the positive really does make a difference. Not always easy but it really is important and does make a difference.

The whole minimalist thing is also bleeding over to other areas of my life and it just makes so much sense. I am going with a much more simplistic and natural approach to my medical treatment and trying to do the same for my kids. Our visits to the NUCCA chiropractor have gotten more interesting and are really a front line approach to dealing with whatever ailments we are facing. Getting the body in alignment and functioning the best it can on its own is critical. This has led us to food sensitivity test. As an energetic type of testing this is much different than what western medicine would tell us we need to be doing but it just resonates with me. While we had already started changing our diet, we fell of the wagon during the holidays and while we have trying to get back on track, the testing has certainly forced the issue. The girls are the only one who have been tested so far and I go in tomorrow.  The test checks for sensitivities to about 500 foods, baking items, food additives, and supplements. The girls both came back with issues regarding gluten, wheat, corn. One has issues with other grains as well. Yogurt is an issue for one. Chocolate, dairy, and eggs are an issue for the other. We are to avoid these foods completely until the girls have been "cleared" of their sensitivity. This is very similar to what Hansa did as far as being able to get rid of allergies. You don't need to suffer from food  or other allergies for ever.  Many of them can be alleviated by having the body reset. Ok, enough said. I really feel for people who have or have family members that have this type of issues. You really have to read everything. (I jokingly told the doctor he could not check me for chocolate, coffee, or shellfish) Hopefully the things we have to completely avoid will only be temporary. He did say gluten is one that we may not be able to get rid of but we are trying to avoid it anyways so we could survive.  We are having to focus on very simple, whole, natural foods which just fits in with everything else. I am carrying this theme over to my workout life and just keeping it simple. Moving as often as possible is the goal. For the first time I am really giving my spiritual life a simple makeover too. Read the Bible and prayer more. That's it. I have been easily caught up in what Christian book, advice, study I should be doing focusing on and finally acknowledged that everything I may be searching for is right there in the good book itself. I set a personal goal of reading the whole Bible in a year. I have thoroughly enjoyed what I have read so far. Even the complicated lists of Kings names, and genealogy, I am spending time in the word and it has been a real blessing.

We are definitely being faced with some challenges right now but this change in our lifestyle has really helped keep me from getting overwhelmed. I find that I can handle stress better. Although it is a challenge some days to keep the positive outlook and to not try and find happiness in the stuff and the things, it is a challenge I definitely welcome. I am expecting this to be an amazing year that is filled with so much yet filled with "nothing" at the same time.

Do you NUCCA?

The past few weeks have been another roller coaster of ups and downs. They have been physically and emotionally exhausting, filled with fatigue and some down right scary moments one of which almost sent me to the hospital. In the end though, they have been filled with hope and I feel like things may be finally turning around. 

I can honestly say that the decision to change my diet ( really our diet as a family) and begin exercising again have been very important decisions on this path to getting better. Although I really wish I would have made those changes long ago there is no reason to dwell on the past. I didn't believe I could really alter my craving for junk but it has happened. I do green smoothies, juice and eat a lot of cooked vegetable almost daily. Most of which are organic. For me juicing and cooking my vegetables makes them much easier for my body to get nutrients out of. It has been so taxed that digesting raw food can take too much work. I have gone almost gluten free and have reduced grains as a whole by close to 75%. I try and eat sprouted grains instead. I have reduced dairy by 50 to 75% and most of what I do consume is RAW milk dairy. I definitely don't feel good when I eat the junk or the gluten. Sweet things usually taste to sweet now and I actually crave vegetables. Who knew. 

I can see some improvements in my body from just the 5 or 6 weeks I worked out with my trainer. It is a somewhat difficult transition trying to workout with out him but I'm doing it. The things he taught me about functional exercises just make so much sense and seem to resonate well with my body so I look forward to seeing how strong I get over the next few months. I will never view exercise the same again. These changes with diet and exercise are definitely changes that I will stick with for the rest of my life. 

I have had some blood work run recently to try and figure out some of the missing pieces to the puzzle. As has happened so often before the test results come back normal. I know it may sound weird but it is really frustrating at first. You get tired of hearing that "they" don't see anything wrong when you know full well something is not right. This time it was regarding my adrenal glands and hormones. What I had forgotten though is the tests that were done were really basic and not the most reliable tests. In fact I am starting to rely less and less on what the blood work says. Just because the blood work comes back normal does not mean things are functioning as they should be. 

I feel like I've been at a crossroads with treatment for quite some time. I was hoping that the blood tests were going to point us in a certain direction but that didn't happened.  I weighed my options and decided that I would try a local chiropractor that I had heard some great things about. I had been to chiropractors before, in fact the doctors from Hansa are both D.C.'s.  This doctor though uses NUCCA and that was something I had not tried. It was perfect timing too because anther Lyme patient was inquiring about NUCCA and I heard a couple stories of people benefiting from it.   Besides being local, the office also had a payment plan that worked for us. Really I barely have the funds to continue with my accupuncture so I needed something I could afford. What has happened over the past two weeks of seeing Dr. S has been huge and given me such hope that I am on the right track. 

NUCCA stands for the National Upper Cervical Chiropractic Assocation. Without going into to much detail because I would probably screw it up, NUCCA involves adjusting the very upper cervical spine area with minor pressure. It is not the typical snap, crack, pop visit and it focuses on an area that no one has ever dealt with. My first visit was a sit down with the doc to go over my history, my complaints, concerns, and few minor tests and x-rays. After that the doctor let me know that he thought he could help me. As much as he wanted to start working on me right away he knew it was important to review everything first. I scheduled a followup for the next day. The second appointment the doctor said confirmed that he really felt he could me. He said in addition to the NUCCA he would be doing bio-cranial work as well. He laid out a treatment plan and we agreed I would see him twice a week for 6 weeks and then once a week for 6 weeks. After that we will figure out how often I may need to see him. He did say I am a very complex case but he likes a challenge. What a surprise. We jumped right in with the first adjustment which only took a matter of minutes. He finished with a couple more followup x-rays. As much as I don't like to have the x-rays they ensure that he is right on with his adjustment. During these first two visits the doctor explained a little bit about how NUCCA works. Basically when things in the upper cervical area get out of alignment it causes problems with the information going to my brain. Bad information going in, means bad information coming back out to my body. I'm very twisted and have a lot of misalignment. The doctor almost laughed and just said no wonder you are tired all of the time. You are so twisted that your body is fighting against it self, against the muscles to try and put you back into alignment. It really was making sense. At then end of my session I was put on the MRS mat. I won't go into that right now but you can look it up. Its magnetic therapy that helps with pain and all sorts of things by kind of acting like a whole body battery charger. A lot of people with Lyme use them and so I am excited to have the chance to use on regularly for a while. I have found that I am very sensitive them which is normal in my condition so I can't do to much time on the mat.

My next visit started off with some muscle testing and energy work. The first thing he says is that my adrenal glands are definitely weak and not functioning as they should. My blood work said my adrenal glands were find which I know in my heart was almost impossible due to how long I had been sick and everything I had dealt with. Next he picked up the fact that I had a virus in my intestine. He worked his energy medicine and put me on a herbal adrenal gland remedy. I'm almost in tears at this point and he was so excited he was almost jumping up and down. He said he could just see things unfolding for me and that we were really gonna get some where. Hope. Dr. Spinato gave me hope. Everything he said made so much sense. It also matched up with what Hansa told me in January. Adrenals and viruses were my two biggest issues. Two different doctors, in two different parts of the world, not knowing what each other said and using slightly different energetic testing methods came up with the same answers. So cool. We did the bio cranial therapy next which is like a big stretch in the neck and upper cervical spine to again help open up the communication to/from the brain. I jumped on the mat and was out the door. With in 45 minutes of my appointment I started getting sick to my stomach. I was "sick" to my stomach the rest of the day and the next. In addition I had a really bad episode of dizziness, heart, just feeling really bad and weird to where I considered the ER. I had been here before though and knew the ER wouldn't help. Anyways I figured I must be having a healing crisis. This is a little different in that herx I have talked about before. This is because my body is kicking in a fixing things instead of a die off of bacteria. I didn't enjoy it by any means but took it as a positive sign. The following appointment the doctor agreed with my thoughts that it was a healing crisis. He was glad I knew enough to just push on. So I have continued to have some healing crisis this week but am taking it as a positive sign.

Here a quick glimpse of what my treatment involves right now. I'm on 4 different antibiotics, a number of supplements (vit d, Co-Q 10, magnesium, adrenals, etc...), silver, acupuncture every other week, NUCCA, sauna daily if possible. I still have my chest port but don't use it right now. My plan is to do the antibiotics for about 3 more months and then be done with them for good. My goal is stick with natural herbal remedies and alternative therapies from then on out and for my family as well. I can't tell you how much I  believe in energy medicine. I will never view medicine the same again. I will be taking my girls to Dr. Spinato soon and look forward to how he can help them. I will be using alternative medicine and therapies for the rest of mine and my families life. I am happy to share anything I can with you about it and highly encourage you to look into these options. They may just change your life. I can't wait to keep you updated on my journey over the next few weeks as Dr. S works his magic. Feeling truly blessed and I like I am on the right path to getting well.

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)