And Then...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Race I Didn't Enter

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

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

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

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

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

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

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

Frustrated but still fighting

As you can probably guess by the title of this post things are not exactly amazing right now. Let me say that I am blessed and my life is good. I have so much to be thankful for. I have been trying to increase my positiveness and stay positive and for the most part I think I have done a fair job. But as you may have learned by now I do vent when things aren't going so well. I have  gotten much better at not posting negative things everyday but there are times when it is necessary and this is one of them. I am trying to walk the line of being positive without making this disease look like its no big deal. There are days when this disease seems like it is the only thing you have going on in your life. The last week or so I am being reminded that this battle will be a life long one. 

Unfortunately this second round at Hansa has not produced the results that I saw the first time. I do believe that has a lot to do with how toxic I may have let myself get. I think because I was feeling so much better than I had in at least a year I was overdoing it and not taking care of my self the way that I should be. I know I have mentioned it in early posts but one of the things that is so frustrating about this disease is never knowing for sure why you feeling like you do.  Is it a herx, is it a flare, is it just part of the disease? Even with tracking symptoms sometimes you still can not tell. Over the past couple of weeks  I have had an increase in my brain issues. I am having a harder time concentrating and am more forgetful. I also feel more easily overwhelmed. Some of my heart and breathing issues have also increased a little. The biggest thing is some of my pain is back. After two months of being almost 100% pain free my joint and bone pain is back. It is fairly wide spread and random as was normal. My hips and knees get really sore when I am sitting or laying. My arms and legs are falling asleep really quickly and I have burning nerve pain. What the heck? This is obviously where my frustration comes in. I guess I had kind of convinced myself I could only go up. So this is my reminder that I guess I can go back down too.

My girls are still doing okay and I feel like Brooke (5) has had some improvements in mood and attitude. My family is plugging along with are better eating habits. I am beginning to believe we can do largely organic without breaking the pocket book. It comes down to my planning a little better but we will get there. I just have to remind myself to take this one day at a time and when we slip, we just need to get back up and move forward. There is no sense beating ourselves up over our mistakes. The girls are getting better at taking their remedies everyday. In about a week or so they will be all done. I'm hoping we continue to see some improvements with them both.

Our next issue is how we continue with my treatment. I wish I could be done but it is obvious I am not ready to stop everything. Hansa really wants me back in about another month or so. I still need to meet with my doctor here and see what he would like to do which I am sure will be to continue with the light therapy I had started at the end of last year. I am thinking I will be putting both girls through that as well just to try and help make sure we have done everything we can. I also have this CCSVI issue to address. It is a very complicated thing. The biggest road block comes back to finances. I hate that this is even an issue but it is. I am trusting God though that he knows what needs to happen and it will be taken care of. For right now I will continue the fight one day at a time.

I always like to end on a good note so I have a couple of things to share. An amazing person (and her family) who has become such an important part of my life have had a breakthrough in her fight against Lyme. She is lacking a major gene that is responsible for her bodies ability to detox. She is the second young person with Lyme I know personally who is facing this issue. I am so excited to see how this affects their treatment and how they feel. They have had little improvement much to the doctors frustration and this may be the answer. So I am beyond excited to see them start to get well. 

Last thing I want to share is some exciting news for the whole Lyme community. This Friday, the 13th, Dr. Phil is taking on Lyme Disease. Please watch it, DVR it, whatever you can do even if you don't like Dr. Phil. He has a LLMD and news reporter/Lyme fighter Brooke Landau in addition to some "bad guys" from the IDSA. The IDSA

Lots of prayers continue to be needed and appreciated not only for my family but for all of the families fighting this disease. Thanks for following along on this crazy journey. Sorry this update may be all over the place. My brain has just not been working lately. 

17 Days and Counting

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

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

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

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

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

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

Beam Me Up Doc

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

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

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

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

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

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

Going International

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

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

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

The gas tank is getting low

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

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

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

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

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

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

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

Riding Shotgun

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

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

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

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

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

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

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

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

Going Backwards

What a first "week" back to work. I say "week" because I am only working three days but that is all I can handle right now. Actually, I am not even sure I can handle that. I guess it is not fair to judge how I am doing off of only 4 days but it was a lot tougher than I thought. First off, my Lyme cycle seems to have shown up early and has decided to stay late. I thought I was going to escape my first few days with no real problems. Wrong! The joint and bone pain that started back in over a week ago has managed to stick around. That is so frustrating. I was so excited to think that the Vitamin C was going to help eliminate it. Maybe it's the cyst buster I  started taking causing a herx. Who knows for sure but I was just excited to think it was gone. I was definitely more tired than I thought I was going to be. When I get off I am ready to skip dinner and go straight to bed. Problem is it's only 3:30. I was just tired and in pain. I have also had a sore throat off and on. This morning I woke up with the sore throat and a headache. By noon I was feeling horrible. I just wanted to be in bed. I took some Advil and went to take a nap in my car. How sad it that? I have to go into the parking garage and take a nap in my car at lunch. I did make it through my day but I honestly didn't expect to be awake right now. The headache is gone for the most part but my back hurts, the bone pain is starting in, my muscles hurt...on and on the list goes. Other than having a major heart freak out today, so far I have had almost every symptom I have ever had. My face started to go numb for a few seconds, I had occasional burning nerve pain, ringing in the ears, burning sore eyes, brain fog, a twitch now and then. It was just a rough day. Unfortunately it wears me down mentally and emotionally. I am expecting the rest of this week to be rough. Maybe some of this has to do with my chelation for heavy metals as well. Regardless of the reason I get a two week break from my Tindamax (cyst buster) and hopefully my Lyme cycle will be done hear in the next few days so next week I can get an idea of how I do when I am feeling somewhat decent. It has just been a rough start. I have labs I have to do that I keep forgetting to do this week and I am hoping to hear a little something from the doctor on Thursday.
One good thing has been that my coworkers make me laugh. I have missed the joking around and it feels good to laugh a lot. On the flip side, just as I thought, things are changing at work. Roles, responsibilities, projects- a lot of it has yet to be revealed but I know for a fact things are changing. I also know that I was only approved to work this schedule for 60 days, calendar days. So basically by July 7th I am either going back to work full time, asking for more time to work a modified schedule, or well lets not go there. Right now it is really just going to be a lot of prayer and taking it one day at a time.
I don't want to go to bankrupt. I don't want to keep asking for money or help. I would like to move my family back into our own house. I can't sacrifice my health though, for any of that. The money or credit score or even having our own house again isn't going to mean anything if I am truly unable to function because my health has gone down the toilet because I was trying to do to much when I wasn't ready. This is a really tough position for me to be in. I could really use your prayers right now. Although I could always use prayers for healing or symptom relief and for finances, what I really need are prayers for guidance, direction, discernment. I need to know what God wants me to do. I need the right doors to open and the other doors to close so I can just know I am following God, not myself, my husband, the world.  I am trying to keep a positive attitude. I am not sharing all of my negative thoughts on Facebook and am putting on a happy face as much as possible. This is my one place to just let it out. Thanks for keeping up on this crazy journey of mine. You have all been amazing. I am blessed by your kind words, your prayers, and your support with my treatment.  Be back soon I'm sure.

Time for change

This is the second time that I have attempted a post in the last week. I just don't feel mentally together. I have a lot I would like to say, a lot of thoughts and emotions I want to get out but it seems to be a little difficult right now. We will see how far I get with this attempt.

To start, my treatment continues with no real changes. No changes in the treatment it self and no real changes in how I feel. I can say that on my good days I feel tired. On my bad days, well that could be anything. I had a really bad episode the other night. I got the strange weak feeling I usually get when I am going to start twitching. Instead of twitching or jerking a bunch I would involuntarily contract a muscle or group of muscles and not be able to release them. Does that make sense? These episodes can cause me to hold my breath, which can be a little scary. My arms became kind of useless as I grabbed the dining room chair and couldn't really let go of it. I also lost my ability to speak. I can hear my family talking and understand what they are saying but I can't make the words come out of my mouth. I also can't make my body move the way I want it to. I ended up at the dinner table with a slight tremor, holding onto the chair, unable to talk and unable to feed myself. It is sad that my 4 yr old is feeding me my dinner because I am unable to do so. I ended up at the table alone and had to crawl across the floor when I was done because I couldn't ask for help and I couldn't walk. Shorter lived than some other episodes but probably one of the most intense. I can tell my neurological symptoms have gotten worse. I am having trouble spelling and sometimes using the wrong words. For the most part I can recognize when a word doesn't look right but I don't know how to fix it. That happened with the word "attach". I had is spelled attache. I looked at it and knew that didn't seem right but I had to ask my husband how to spell it correctly.

I am going forward with a new form of testing for Lyme and all of the co-infections this coming Tuesday. My doctor likes it better than the existing testing. It is really expensive, but less than the original testing I went through. It is called Spirostat. I think the best way I can explain it is, it looks for DNA of the bacteria or parasite instead of looking for antibodies you developed after an exposure. It is supposed to be really good. So I am excited about that. I also just did another bunch of blood work I should have the results on soon. We will see where all of this leads.

I have so much I want to say about money and stuff and what important in life but I just can't find the right words. I just want to share from my heart and tell you about some of what we have gone through and give you some things to think about it. Whenever I start to write about it though, it comes out like a major lecture. Let me just say that we are so devastated financially. We are at the point where I can't go get a Starbucks or we can't drive through McDonalds or we may not be able to let the girls go to birthday parties because of money. I just want you to think about your situation and if you could survive more than a month or two with a loss of income from you or your spouse. I think there are very few people prepared to face these situations. We are spoiled more than I have ever wanted to admit. Although, we aren't financially rich so to speak if I wanted a mocha or was to tired to cook dinner do big deal. How would handle having those things taken away from you. Cutting back is one thing, we are really having to look at changing a whole lot in our life. I know a lot of people, not just lymies, have to face a situation like this (especially in this economy) but wow is it harder than I thought. I am trying to be creative and just make sure we are making the best choices possible. I am putting everything I can on craigslist to make a few bucks. I don't want to put groceries on credit cards. We aren't even to the point of having to pay for my IV's yet. Things are only going to get tighter. It is just a reminder of how unimportant "stuff"is but it can be a big shock when you aren't used to having to live this tight. Just please look at your situation, and think about how well you and your family would adapt if you had to go through this.  I pray none of you do, it is harder than you think. Sorry for the sob story. It didn't come out exactly the way I wanted it to, but it is the truth.

That leads me to another point. I am working on changing up our families diet. This is based on a book my doctor wanted me to read. The short version is you eat all the eggs, meat, veggies and fruit you want. Dairy is supposed to be limited and you are not supposed to have the grains, sugars, etc...Now I can't cut the whole grains and carbs completely but we are trying a modified version of it. The problem comes in when you are faced with such a financial problem. The doctors want you to go organic and healthy which can be hard to do on a tight budget. Mac and cheese, cup o noodles, and some of that gets really cheap but is so bad for you. So I am trying to find the balance between the two. The few weeks we jumped into the diet weren't too bad. I am finding some good deals on meat (can be any kind) and going for fresh fruits and veggies. Trying to go with whatever is sale. It will take a little time to get it worked out but I am hoping we can get there. The basic premise behind this diet has to do with the fact that blood sugar issues are the real cause of most or all of our major health issues not the fat and cholesterol like we are taught. If we go back to "cave man" style of hunting and gathering we will better off. The issue with grains is that they are highly inflammatory for most people and didn't really come into our diets until later. So anyways...I will try and keep you updated about how the diet is going for the family.

So I guess that is it for now.  Kind of feel like Dory from Nemo right now-"Just keep swimming. Just keep swimming. Just keep swimming, swimming..." Thats all I can do is just keep swimming and trusting God.