Sugar Demon

Well, I've successfully completed the first week of my Whole30 and am starting day 9. It hasn't been easy but it's getting easier. I have never quite mastered the cooking world. I mean I can get buy okay and lucky for me my hubby is fairly simple guy but I don't break out a cook book often and stay away from anything I would consider complicated. Add in the fact that our family has been in a serious eating out rut due to my level of fatigue and our schedule it is has been a little of challenge getting back in the kitchen. I don't doubt that these things contributed to my first being a little bit of challenge. Lots of tuna salad, scrambled eggs, and chicken filled my plate each day with a side of celery, carrots, and apples. I am determined to figure out some new things to eat this week. I really need some red meat in the mix.

I have been reading labels for a while but it is really eye opening to read the label of everything you area considering putting into your mouth. While I am allowed to have deli meat or any meat for that try finding bacon, turkey, ham or even sausage without sugar in it. I was so tempted to throw things in the grocery out of frustration with every label I read that had something non compliant in it. I finally got a little bit of break at Costco and found Adelle's Chicken Apple sausage that I could have and I splurged on shrimp platter for my self. Of course I had to forgo the cocktail sauce but at least it was a change.

The first week was also filled with lots of symptoms again not knowing for sure weather it was the ozone or the change in eating habits or just a major flare. I suspect the first two are likely culprits. The ozone probably killed some bugs and the lack of sugar probably made the candida and lyme angry. So I was left with lots of fatigue, pain and weakness in my arms and legs and twitching episode or too. The last few days have mainly been filled with fatigue so I consider that an improvement. 

Unfortunately my cravings have not gone away. There are a million things I would eat at the drop of a hat right now but the one thing they all have in common is sugar. I have decided I don't just have a sugar monster, or a sugar beast. No I am dealing with a sugar demon. I really shouldn't be surprised, I mean I have been a sugar-a-holic from the time I was a kid. In the summers when I would go to work with my dad at the construction site I would take every opportunity to eat the sugar cubes in the job trailer. In highschool a snack would be Reese's Peanut Butter Cups and a Dr. Pepper. Oh and when my best friend and I were having a sleepover so we could head to the beach early the next morning I would make sure I brought ice cream for breakfast. While I was hoping those cravings would have started to fade already I do believe they will in time. I'm beginning to think that I may be looking at a Whole60 or 90 instead. I do know the husband and kids are going to have to participate in the next round. I want the girls to start making those much healthier choices now especially with their recent Lyme Diagnosis. 

I guess that's it for now. Time to figure out whats for dinner! I'll check back in in a few days.

P.S. I forgot to mention the other thing you give up for 30 days...the scale. It will be fun to see the changes 

Lyme Times 3

I was thinking it was time for an update and that had probably been over a year since I last posted anything. I was surprised to see that I had actually posted something back in February but honestly had no idea what I would have said and had to read it to refresh my memory.  Figuring out where to begin and what to tell any of you who may read this is always a difficult task. My thoughts are so scattered and I get distracted easily. While writing down a list of things I want to cover and in an order that makes sense could be useful the effort and time it would take me to do that would probably mean I would never get to posting anything. Frankly most of you are probably used to my rambling at this point especially since I seem to talk the same way. Just be prepared the brain function has diminished a little further...here goes nothing.

I'll start with an update on my girls who turned 12 and 9 over the summer. Both of my girls have suffered from some seemingly random complaints and symptoms over the course of their lives. The list has included hives, chronic stomach pain, leg pain, nystagmus and dizziness to name a few. On occasion these things have warranted a trip to the doctor or specialist and resulted in numerous tests. We've gone through blood tests, x-rays, mri's and other tests checking for allergies, hip dysplagia, brain tumors, dyslexia, and cystic fibrosis. The diagnosis's we were left with were allergies, sensory processing disorder, a chiari malformation and a syrinx. When I was diagnosed with Lyme back in 2010 and discovered it was very likely that I had passed it on to my girls during pregnancy some of the things they were experiencing began to make sense. I knew we needed to get them tested for Lyme at some point but also knew that a blood test wasn't definitive. This summer I think we reached a tipping point and we finally had the test done about a month ago.

My oldest daughter had been experiencing random dizzy spells for over a year. They were only lasting 30-60 seconds and never seemed to correlate to anything specific. I was bothered by them though and took her to her pediatrician. To make a long story short we were sent to a cardiologist, diagnosed with a completely normal "arrhythmia" and told if the dizziness continued to see a neurologist. So we ended up in the neurologist office earlier this year. The doc confirmed my daughter had vertigo and ordered an MRI any possible causes. The MRI showed a small chiari malformation where the cerebellum was being pushed down into the spinal column. We were assured it really wasn't a big deal, that it probably wasn't even the cause of the dizziness and that out of an abundance of precaution we should do an MRI of the spine but to expect nothing to come of it.

When the phone rang just a day after the second MRI I knew they must have found something. While the doctor did her best to remain calm it was easy to tell she was still in shock and not sure how she should tell us she had been wrong. The MRI revealed a syrinx between the C4 and C6. This means that spinal fluid has been forced inside the spinal column. We were told we needed to consult a neurosurgeon. The initial recommendation from the pediatric neurosurgeon in San Diego was to do decompression surgery which required removing a small piece of skull hopefully relieving the pressure on the cerebellum and allowing the spinal fluid to go back to normal or at least not get any worse. We got a second opinion from a pediatric neurosurgeon in Orange County who advised against the surgery for now. After a 3rd MRI, some research, prayer and another doc appt we decided against the surgery for now and will just monitor the situation. Neither doctor believes this to be the cause of the vertigo. So we are left with something new to monitor and still no answer for the vertigo. This was my breaking point and I knew we needed to follow through with testing and see if Lyme was something we were dealing with.

I really like our pediatrician, the fact she is somewhat close by, and that I have Children's Hospital urgent care around the corner from our house, I didn't want to change doctors just for the purpose of Lyme so the decision was made to take the girls to my doctor and pay cash. Unfortunately I had to take them alone and I was so worried about the screaming that would come from my 9 year old over getting a blood test, It was a very tense morning, and it took 10-15 minutes of physically holding my baby down to get the blood drawn but we did it. Now it was just a waiting game. We did the test thru IGenix which is one of the best labs for Lyme testing and after about four weeks we were able to meet with the doctor and go over the results. I'll spare you all the details of how to read a test and what they really mean but the bottom line is my doctor diagnosed both girls as having congenital Lyme disease. I can't say I was shocked and it wasn't going to change much but know we had an official diagnosis and could go forward with formulating a game plan. Although my doc would really  support antibiotics we are going to approach this from a much more natural stand point for now and see where we can go. Besides the physical side affects of abx there was some concern that being on multiple medications for months would have them begin to take on a sick mentality. We want them to live life to the fullest and not let their brain trick them into thinking they have anything to hold them back. Obviously we have a long battle ahead with Lyme times 3 of us. Praying we can get a handle on this before it gets our of control.

Now on to me. I am still believing that 2015 will be a game changer in my fight. Besides my own determination there has been some much needed to exposure to this disease and new ideas for treatment seem to be constantly emerging. Some unconventional blood testing showed I was probably suffering from leaky gut, serious candida issues, among some other things and it was the push I finally needed to clean up my diet for real this time. Just before Mothers Day I decided to cut out gluten and significantly reduce all grains, dairy and sugar. I must say I was proud of how well I did and it certainly wasn't easy. Turning down the fresh bread at a restaurant, avoiding crackers, chips and the fresh baked chocolate chip cookies, cheese on anything and pizza at the team parties was hard but overall I was more successful than I had ever been. While I lost between 10 and 15 lbs with no exercise, the bloating went away and my skin cleared up a bit I had no noticeable improvement in how I really felt. I couldn't say my pain was gone, I had more energy, or my brain was working better, It was frustrating and while I didn't revert to my old ways I definitely began to give in more often. This past week I was at my doctors office having my second ozone treatment (more on that in another post) and he told me my blood looked good. We began talking about the changes I had finally made and he encouraged me to do the Whole30. I came home and began researching right away and decided I needed to go for it. There are a lot of great success stories involving Lyme Disease and I knew it was worth a try. I am planning on keeping more of a running blog about my Whole30 experience like I did when I went to Hansa a few years ago. I'll give you the basics of the plan  (diet is not the right word for this) and tell you how the first 2 days have gone. 

By doing the Whole30 I have committed to no: added sugar of any type, grains, dairy, legumes or alcohol for a minimum of 30 days. NO CHEATS! NO SLIPS! NO EXCUSES! Meals consist of protein lost of veggies, some fruit and some good fat. In preparation for this I decided to get a little crazy with eating junk for a day or 2. Not smart as I my gut paid for it but I got in a slice of cheesecake, the most amazing chocolate pudding, a soy latte or two, a quesadilla and cheese enchilada, some pita chips...you get the picture. The timing of this may not be great as I am finding that my ozone treatment is stirring stuff up but I determined to push through this. My pain the past day or two is at an all time high. My abs hurt like I have been doing crunches for a week and I've done nothing that should make them hurt. I mean it hurts to turn over in bed. My exhaustion is through the roof and I was essentially bed bound yesterday sleeping most of the day. I'm really a wreck. I'm waiting to see an ENT as I have had a sore throat, losing my voice, trouble swallowing pills, and a host of other problems for over a month now. Needless to say I am kind of in a desperate spot. This will make it somewhat difficult to determine what things are coming from diet change vs treatment or just a flare in symptoms but it almost doesn't matter at this point.  I can say extra prayers are certainly appreciated. 

Back to the Whole30. I haven't been super hungry these first two days but my cravings have been significant. I really want chocolate and just about anything I can't have but I'm holding on to hope that these cravings will pass. It is truly a moment by moment decision to stick with this. I'm trying not to focus on day 30 but on each moment or craving as it comes. From what I have read, I may be doing ok craving wise by day 10 or so but I also may be wanting to punch everything in my way. So my friends be ware. Maybe I will just stay in my room that day. 

Right now my overall plan includes lots of supplements putting me at about 25 pills a day, essential oils to support my body on a million different levels, blood ozone, and the Whole30. Things I am looking at possibly doing next....UVL, LDA and even dare I say medicinal marijuana. I will post more on all of those things as I keep you updated on the Whole30. If you have done the Whole30 I would love to hear about your experience. Until next time 

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.