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)

Random Story

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

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

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

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

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

New Job

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

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

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

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

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

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

MCIDS- Is that what they are calling it these days?

It looks like I inadvertently took the summer off from my blog. I certainly didn't mean to let things go so long but I guess after more than 2 yrs you try to think about other things in your life besides your illness. I say try and think about other things because the reality is, my brain is consumed by this illness a good part of everyday. It manages to creep in and interrupt what I am doing with every pain I feel, every commercial for flea and tick medicine, every Facebook post from a fellow brother or sister with this illness...No matter what I do I can't completely escape it. 

I wish after two years I was also able to say that I have come to terms with my situation, that I am okay with it, and it doesn't bother me any more. To say that would be a total lie. Just today, I broke down and told God I was over it, I didn't understand why my family was having to endure this, I wasn't okay with it, and I wanted it to end. The good thing about my God is, He gets it and allows me to have my moments of frustration and anger. Then He gently reminds me, He has got it under control. I continue to work on trusting Him and having faith that something good is going to come from this. 

Things have been a little bit "confusing", (I guess is the best way to put it) over the last few months. After coming back from Hansa the second time, I was dealing with the news of the girls and focusing on them plus dealing with the fact that I didn't feel much better and was a little frustrated. I was actually feeling somewhat worse. After a phone consultation we decided that I should try taking some colloidal silver and that we would try another remedy for Brooke as her stomach aches had not cleared up. I knew I needed to follow up with my doctor here and that kind of threw a wrench into everything. Although my CD-57 number had increased a good chunk, a lot of other numbers still were not good.  My vitamin D levels are still low and now I came back positive for Kawasaki Virus in addition to the two forms of pneumonia, Epstein Barr, and HHV6 that I had already tested positive for. Although these are not acute infections where I am contagious, they are constantly in my system and can reactivate at any time. My system is taxed to say the least. My doctor agreed that I should do the silver because that would be my best bet against the viruses but based on everything I should go back on 3 different antibiotics. Dealing with all of this information in combination with a super busy All Star softball schedule for my daughter my treatment got off track and I ended up on a break from treatment. The reality of that decision has set in and I seem to be failing fast. 

Part of the frustration and confusion in this is that there is no clear cut treatment. With other diseases and illnesses there is usually a standard course of treatment. It is widely recognized, accepted and agreed upon by most medical professionals. With this, not so much. As I may have mentioned in an earlier post my husband and I went a seminar on Lyme by one of the top Lyme doctors I think in April. The information that came out of the few hours with this man was overwhelming to say the least. My poor husband was so lost because he had not thrown himself into the hours of research like I had and a lot of the terminology was foreign to him. Heck, a lot of it was even over my head. Couple that with the amount of information crammed into these few hours and your head was spinning. One of the things that stuck out to me was the push to change the name from Chronic Lyme to MCIDS- Multi Chronic Infectious Disease Syndrome. The reality is that a large majority of people with Lyme have other on going chronic issues, such as viruses, co infections, pain, yeast problems, heart problems, fibromyalgia, neurological issues...the list seems to go on forever. Changing the name in and of it self doesn't change much but I guess it is a better description for the totality of what we are dealing with. Next came the fact that there are about 15 different things that need to be dealt with when treating MCIDS and they needed to all be dealt with at the same time. That was a new approach to the way I had been doing things. It made sense but also left me wondering where I even begin. My head has been spinning ever since with what my next step would be and where to go...am I going natural, traditional, a combination of both? Do I go broke going to Hansa or try something new that is local? Where do I go next with my kids?

Here I sit a few months later just as confused and still unsure of what we are going to do. The only thing I do know is I can not sit here and do nothing. That little break is catching up with me at a rapid pace. I am filled anxiety every night at bed time and can't fall asleep. I wake up tired, weak and in crushing bone and joint pain. I have seizures almost weekly. I am short of breath and have heart palpitations. My short temper, anger, rage and depression is ramping up again and I feel like an awful person. I would rather feel like I am physically dying 24 hrs a day then feel for 1 second the way I do after losing my cool with someone, especially those I love most. The bottom line is, I am once again afraid for my life and wonder just how much longer I can keep this up. My brain function seems to be decreasing everyday. I can't remember simple things, I can't spell to save my life,  I am getting confused, and in all honesty there are times where I questions my ability to take care of my kids. As school, sports, and life seem to ramp back up to a frantic pace we have got to find a way to deal with this all. Ask for help, say no, cut down on the clutter anything to make things as simple as possible. 

We also realize the need to go back to some basics. Summertime bbq's, birthday parties, etc...have contributed to a slide in our diet. So this Sunday our family, along with another dear family,  and maybe some others are embarking on 30 days of clean eating. I am hoping being accountable to someone other than my husband may help my to stay on track. Drinking plenty of water, using the sauna daily, getting plenty of rest, some exercise and taking my supplements and meds are also on the list. I am hoping that over the next 30 days we may gain some insight, clarity, and direction for where to go next. 

I am almost ready to pay someone to take over my health care. Someone that can do the research objectively, look at the all the options and advise us where to go and what to do. In the end I know these are decisions that we have to make for ourselves. You just begin to get so lost...how long do you try something for before you decide it isn't working? When does a medicine become more detrimental to your health than doing you good. Once again, the reality has been made very clear, by top medical professionals in this field, I will be dealing with this for the rest of my life. For my kids, this will truly have been a life long battle. I know our situation could be a lot worse. We are blessed and still have the ability to bless others for which I am so thankful. I just need to know that we are making progress and getting somewhere. Thanks for "listening" and please keep us in your prayers. Will check in soon.

Living Life In Spite Of...

I stole this title and kind of the basis for this post from a friend of mine. I didn't realize it had been so long since I had written an update about whats been going on. It's my same excuse as always, things have been crazy. I long for the day when things are no longer crazy. Until then, I guess I am learning, as so many others are to live my life in spite of Lyme, in spite of the pain, in spite of being tired, in spite of having no job, in spite of being a financial wreck...The past  two months or so have been really rough on me physically. My"symptoms", if that's what you want to call them have been really bad. I think I am approaching a week with out a seizure which is kind of big deal. I got to the point where I was having them daily, sometimes multiple times a day. I had my worst seizure ever just recently. I have had the most awful acne problem I have ever had in my life. I am almost 35 years old and feel like a junior high girl again. I am in need of nap almost daily but I can't seem to find the time. My brain function is starting to go again and I struggle to spell simple words or remember something for even 5 minutes. Then there is the pain. Pain of all types, in all places, daily, hourly, almost every moment. This has all been taking a toll on my emotionally. I have had some dark days and really had to fight to pull myself out of them. 

My kids are still struggling as well. The drastic improvement I was hoping for has not happened yet. Still we go on. Then just the other day, I found out that my dad had been bit by a tick while staying in Illinois. The tick was engorged and the bite was a little red. I sent my parents to the doctor right away. Of course the doctor told them they had nothing to worry about but they got him to give them two weeks of doxycycline anyways. Two weeks is not enough, but at least its a start. Three days later, the area around the bite was a swollen, red, and warm to the touch. Looks like one of the many Lyme rashes out there. Could we really be going through this again? At least we caught it early and I am praying my dad develops no symptoms from this. In the meantime another mom I know, in the same area in Illinois, daughter was just bit. It breaks my heart to think of someone having to go through this nightmare. I can't help but be extra concerned about my families trip back there next week. If any of us get bit, I am not sure I could it handle it.

With that all being said, some recent blood did show a significant improvement in my Cd-57. That leads me to believe Hansa was right, and my biggest issue currently may be more of the viruses or maybe the co-infections instead of the Lyme itself. I am definitely grateful for the improvement even if I don't feel better yet. 

I have come to realize through all I have been facing and what a friend has been going through that we are doing are best to live our lives in spite of Lyme. Everyday when I get up and take my kids to school,  when I do team mom things for my daughters All Star team, when I wash dishes, go shopping, pretty much go any where or do anything I am choosing to live my life in spite of my disease. If I did what I physically and emotionally felt like doing everyday...I would not get out of bed, I wouldn't smile and tell people I was okay, I wouldn't give my life much effort at all. But I realized I am making a choice on a regular basis to push through the pain, to push through the tired, to push through all of the negative things and live my life to best of my ability. For once I am realizing that I need to give myself a little credit.  The house is not always clean, I don't always remember to show up and help in my daughters class, I don't get to work out like I want but I am not allowing myself to give up. Though this may not be the life I dreamed of as a little girl, it is MY life and I am lucky to be living it. I have been blessed in more ways than I can say. I still struggle with the thought that this may be as good as it gets. Will I ever be functioning at close to 100% ? I don't know. Instead of waiting for that time to come, if it ever does, I will choose to live my life in spite of...

As always, thank you to my friends and family for all of your support. Thank you especially to Caity and Joni for the inspiration. Caity you are a shining example of living your life in spite of Lyme. I love you both and am so thankful that if I have to go down this road, that I can down it with you. 

Do A Little Dance

People that know me the best know that I like to dance. Well actually I love to dance. It is almost torture to be some where, especially with a dance floor, when a good song comes on. I can't sit still. I have a constant need to move to the beat of the music, in church, in the car, at home...Anyways I think you get the point. So the other day I made up a new dance. I decided to call it the Trader Joe Twitch. It is so easy to do I figured I would share it with you just in case you wanted to try it. All you have to do is grab a shopping cart, walk into your local Trader Joe's, and then begin having a seizure as you push your cart around the store.

That's right, after almost 3 months of no seizures I had one the other day when I was grocery shopping. I felt like one was coming on for about 3 days. I tried so hard to make it go away but with no such luck. I needed to get my shopping done so I just carefully maneuvered my cart through the store trying to not accidentally hit someone or give them my almost famous seizure thumbs up. I tried to keep my vocalizations quiet enough as to not draw attention and I fumbled my way through a conversation with the checker, stuttering as I went. I had a few choice words running through my head as I let my frustration get the best of me. What the heck is going on? Why do I feel so bad again? I don't understand.

For close to a month now I feel like I have been starting to regress a little bit. I assumed that the transient pain that was starting to reappear had to do with stopping my remedies to early by mistake. However when I went back to Kansas last month, the remedies I thought would be responsible my body didn't want anymore. To make it even more frustrating, it looked as if my Lyme was under much better control but my viruses were really a problem. Any progress I had the second go around is gone and the last week, especially the last few days have been hell. I am beyond tired, my brain is pretty much worthless, the seizure, and the PAIN! Muscle pain, nerve pain, joint pain, bone pain. The joint and the bone pain are at getting fairly high up on my pain scale and it has been this intense for three days now. That has never happened. Time to e-mail the doc and see what his thoughts are. I have been trying to detox more than normal and don't feel like I am getting any relief.

I am so bummed out right now. I guess I just thought things were really moving in the right direction (which they may be) and that I was reaching a stopping point so I feel like I am so moving backwards. I have been reminded recently though that my treatment is almost for sure going to be long, really long, term. I have been sick for over 26 yrs and I can't expect to get better in a year or even 2 years. I feel like I am at some sort of cross roads though on what I do for treatment. Frankly weather I go back to antibiotics or stay on the natural road with Hansa or someone else we are out of money. So unless I win the lottery the best treatment for me at this point is probably not going to be an option I have. I just feel lost at this point. I don't feel like I am even able to make the best treatment choice anymore. I need a third person to come in and hear what all the doctors have to say, and do some research and help me sort all of this out. It is just to much.

To make things more complicated, we of course I dealing with the fact the our 8 yr old has Lyme. I found out this week she has been suffering from the ringing in the ears and her intermittent dizzy spells are happening almost daily. She also broke out in the worst case of hives she has had in years. I don't know if this is a healing crisis, if the remedies have stirred up the Lyme and the bacteria is changing form, or what is going on. Her pediatrician doesn't even know about the diagnosis yet and frankly can't treat her as she knows nothing about it. I so wanted to go the natural route with my kids but am not sure if that is going to work. Both of my natural options are probably out of the question financially. Switching the kids to my doc would work for a little bit but again the natural therapies would cost more than we can afford. If I stop all treatment I will go backwards and could end up not able to care for my family at all. Yet at the same time, I won't let my daughter suffer. This is really something only God can handle. I have to remember to just give it up to him.



I'll let you know what the doctors say and how things go over the next week. Prayers and positive energy are always appreciated. Oh and I finally have a website for my new business. Please check it out and let me know if you could use my services.  www.surfchaserphoto.com