Stormy Seas

A few months ago I had some big ideas of where this year was going to take me. I was trying some thing new for my health, focusing on being able to once again contribute to my families finances, changing up my blog and committed to sharing my story. January and February seemed to comply with my best laid plans and then March rolled in and things just kind of go flipped on their head. At this very moment I am trying to my best to ride out the storm and when the waters calm enough for me to get my bearings, I can re-evaluate the course I am on.

After sharing some little wins with my health and the fact that my the pain I usually experience around my cycle and a full moon was gone, the winds of change blew in and the pain came back. Not only did the pain come back but everything started to go in a downward spiral. I am having days as bad as they were right before my diagnosis or during the first of year or so of treatment for Lyme. I just don't know how much more of this I can take. 

My brain is so inflamed and jumbled up right now I can guarantee my spelling and grammar will be off and the words aren't going to flow smoothly as I share whats been going on. It's important that I share this for those of you that have been following this journey, for myself so it clears my mind somewhat and for those that is may help. So please bear with me. 

For some reason my nerves are not happy. The one symptom we had managed to significantly decrease and for an extended period of time was burning nerve pain. The ghost that sneaks up and holds the invisible cigarette lighter against my skin has decided to come back and visit my regularly. I can be cooking dinner, driving down the road, or laying in bed and the searing, burning pain is so bad I am surprised there are no blisters or scars. My muscle pain and weakness has returned full force. I am back to wanting to cut my arms off because the discomfort is so bad. I am battling my seizure type activity regularly. My legs are restless and I just can't get comfortable. I am having muscle spasms all over. 

My heart is acting up again. Palpitations. PVC's. Recently I had to walk a short but somewhat steep hill and I had some chest pain. It went a way quickly but it is still scary. The only other time I have really had chest pain is when my heart rate had jumped up to 272 bpm on treadmill stress test. I get short of breath really easily and just don't feel good. 

My brain is not functioning well. I am confused, lost for words and anxious. I start sentences and stop talking mid way through with out realizing it. My 10 yr old told me the other day I keep doing that and how something is wrong with my brain and I'd better see the doctor. Oh if only there wasn't so much truth behind those words. It really sucks when I have to look up my 5th graders spelling and vocabulary words or words she needs help spelling because I just don't know any more. 

Fatigue. Or should I say FATIGUE! I maintain to this very day that if I only had normal healthy energy and the ability to sleep well and feel rested when I woke up I could live a full life with all of my other symptoms. Fatigue is the one thing that has never gone away. I have been dealing with it consistently for 20 years now. And it's only gotten worse. I am back to being severely exhausted so much so that I can not always stay awake through the day. Miserable. Most days I get the kids to and from school at least. Part of me feels like my body continues to adjust to what I am dealing with. So in someways it may seem to you like I am doing more, and maybe I am, it is not because I have made such great improvements or that I have put the disease into remission but more so that I have learned to survive with a new normal. A certain level of feeling bad becomes normal so I have to feel that much more crappy for things to take me down. Something has got to give. I feel like I am in limbo or some other "in between" state. I know this sounds horrible to say but I am committed to keeping it real so ...sometimes I wish things would get so bad that I was stuck in the hospital. Then the seriousness of what I am facing would be evident. It's like get better or get worse but don't just stay in this in between state that keeps functioning enough for people to think your doing fine and yet bad enough to make you look just plain lazy. 

I know I am at the heaviest weight of my life and extremely out of shape and both of those things aren't helping the situation so I am trying to refocus on those areas. While I do have an appointment to see my doctor next week, the reality is so much of this I just have to figure out on my own. If money were no object I would stand a better chance of getting things figured out but even then this whole mess is just so complicated. It it critical though that we make some way. Not only have I lost a good part of the last six years with my husband and kids, and the my oldest will be gone before I know it but there health is becoming more of an issue. I can't put dedicate what I need to, to help them if I can't take care of myself. And so the story goes. 

This leads me to where my kiddos are in their journeys and my current worries and stress. My 13 yr old continues to be monitored by a neurosurgeon for her Chiari Malformation and Syrinx. She recently had a repeat MRI early than expected for some unusual persistent head pain in the back of her head. All remained unchanged with her other issues which is good but we had no known cause of her pain. If I hadn't shared in any early posts, she also broke her hand just before thanksgiving in a freak accident. It was a fairly traumatic injury and besides breaking her second metacarpal she lost a lot of skin about the size of quarter on the top of her hand. Her scare continues to hurt, the coloring in her hand is off just a little, and she is now having pain along that metacarpal. UGH! She has some random aches and pains and still some dizzy episodes so we continue to run tests, and when all comes up clear I just check the Lyme related box. Unfortunately trauma can cause things to get out of control so I am really monitoring her since her accident and am hoping this doesn't unleash the wild beast of this illness.

My 10 yr old has put me through the ringer the past few weeks and I just have this gnawing feeling in my gut something bigger is going on. She along with my husband and other daughter had been sick earlier in the year with a flu type virus. We managed it at home and either I didn't get it or I did and maybe that's why I am having an issue at the moment. I have never seen my hubby so sick. Fevers, body aches, sore throats, etc...Jump ahead about 4 or 5 weeks and my baby started in with a low grade fever and just not feeling great. It would come and go on it's own, disappearing for  24+ hours before returning. She started sleeping a lot, not eating. Blood work showed an elevated SED rate (which indicates inflammation) and she had (actually still has) and swollen lymph node in her arm pit. Long story short after almost a week she was diagnosed with bacterial pneumonia. I guess it was making its round at school but it was just a little crazy the way hers presented and I am thankful that I was persistent with the doctors that something was going besides the standard virus. She lost almost 3 pounds in a week and she is a string bean to begin with so we are working hard to get the weight back and she is still taking it easy. She gets worn down somewhat quickly and just still isn't a 100%. I do realize the lymph node may totally be related to the pneumonia but I am keeping my eye on it. In addition, she has these spider angiomas. They are typically considered benign. Just maybe fragile blood vessels. I had some as a kid too and they aren't all that uncommon. At her first doctor visit for her ongoing fever and lymph node issue the doctor saw one on her hand that she thought was a petechiae that can be a sign of Leukemia. That caused her to start looking at my daughters hands and arms. While what caught her attention was just an angioma she commented about how many there were. While she doesn't seem incredibly concerned about it there were about 12 which is on the higher side. Usually there are only a few. Well today I found 3 new ones. There isn't any really clear information on what they may mean for a child. They can be indications of liver issues but so far we don't have any other symptoms to go on. So while I am trying to remain calm my mommy sense just is nagging me so I am doing my best to stay on top things. 

I am sure I have so much more I could say but I am tired and brain has decided to give up for now. I once again don't know where I would be with out my faith in God. Frankly I have cried, yelled at and questioned Him a lot lately. What an amazing father He is to love in spite of this. As angry as I get with Him somethings He is also the only thing that gives me hope to go another day. I've got some special people fighting some serious health battles I am keep in my prayers and honestly I'll could use your prayers too. Preparing to take on what ever challenges tomorrow holds for me. Thanks as always for your support.

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

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. 

Second Chance

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


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

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

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

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

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

Finding Balance

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

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

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

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

Hansa Day 3- Body Language

Today marks the end of day three and I must admit I am feeling ok. In fact a thing or two may even be a little bit better. Despite an excruciating headache last night, I feel asleep easier than the night before and slept really well with out waking up a bunch. That is a big deal for me since I usually am awake through out the night. Weather it has to do with my new supplement or not I don't know for sure but I will take it regardless. Also for the second day in a row my feet haven't been cold. I know for many of you that sounds silly but when you are cold and your feet are chilled inside your Uggs in a house that is 72 degrees to the point that you have to get into a hot bath multiple times a day to get warm then this is a big deal. So yay for warm feet. The joint and muscle pain that was really bad has eased up as well. So far I am really impressed with everything.

Today was very similar to the last two days. My treatments don't vary much other than their order and the areas of the body they are targeting. Maybe this weekend I will take the time to write up a little definition of each treatment. I realize that I have not explained all of them adequately. Anyways, I really wanted to tell you a little more about the bio-resonance scanning or as I call it sign language for the body. This technique of asking the body questions is done a couple of times a day. The massage therapist uses it to determine what essential oils you may need and what things may be going wrong. It was so interesting because I had my massage this morning and the first thing she told was that I needed something for gastro stuff. (TMI coming) I told her my digestion was actually doing better but she said, well your body still says it needs it. Then I told her that I was having some cramps and ovary pain that wasn't normal this time of the month. She said that is all related. Then she told me I needed some stuff for sore muscles. I hadn't even told her my my arms and legs were really achy but she knew. I am believing more and more every day. The even crazier thing was tonight I did get kind of sick to my stomach. So my body told her before me. Crazy! I was also having some low back pain. She worked a lot on that area and said she felt like it was not all muscle but that I might have a descended colon, so my colon had dropped. That was confirmed a little later by the doc.

I went and saw the doctor after my massage. We discussed symptoms and what had improved then it was time for some work. He did some BRS and and some more myofascial release with the percussor (?). Her went beyond my spine this time and worked on the arms and legs and the organs. He agreed with the colon and it seems like most of my organs were out of place. He fixed it while I was laying down but when I sat up the organs moved again so he did the therapy while I was sitting up. Then we discussed treating my scars. I did tell him, that my scars had been treated with the light therapy at my doctors but he wanted to do them again using his procedure to make sure they were clear. First he determined which of my four needed attention. It was only my thyroid and my port scar that needed work. We used the laser, oil, and a special pen type device that send a tiny shock to clear up any bound energy in these scars. Although the pen thing was a little uncomfortable he had an amazing way to show me it worked. This blew me away. Dr. J brought out this doll that sings when you hold her hands. She has two little metal buttons so to speak on her hands and when you hold them in yours you complete the circuit and she begins singing. (I think it was ring around the rosie) Then I held one hand, he held one hand and then touched me with the other and she sang again. This showed that we could complete the circuit together. Then he repeated this and touched me along my thyroid scar, she wouldn't sing but made some static noise. Then he did this on my port scar and there was nothing. So he treated my scars, and repeated the test with the doll and this time she sang on my thyroid scar and made static on my port scar. It was very cool. I am learning so much and totally believe in energy medicine. You would almost have to see this for your self. Tomorrow we are going to treat some cranial-sacral issues that are effecting my brain and what not. So I am sure I will have a lot to report tomorrow. I have a slight headache creeping back, but overall I don't feel to bad. I detoxed a bunch of lymph, joint, and I thing gallbladder stuff out of my foot bath today. I will be detoxing myself and my family from here on out. Everyone needs to do it. There are going to be some major changes in our house about food choices, chemicals, use of plastics, etc...It is crazy how much junk we are exposed to and what it does to us.

With that I am off to detox in the bath and get some much needed rest. Here is to another night of improving sleep and no more cold feet! As always, thanks for the support.

Hansa Day 2- The Proof is in the Water

Be still and know that I am God.- Psalm 46:10

Day two is coming to a close and I am ready for bed. I'm sorry if this ends up being a short update but I am still a little on information overload and am really tired. I also have a horrible headache which I can't seem to figure out if it is sinus, tension, or both. Just one for thing for them to tackle tomorrow.

So today I started out by seeing my doctor, Dr. Jowdy (he reminds me of Clark Kent a little). If he helps me get me better he really will be Superman. Anyways, there were a couple of things I forgot to mention yesterday that popped into my head that the doctor had mentioned. To start, when doing the second test yesterday Dr. J was able to determine that both of my shoulders are out of alignment, my right wrist and left ankle are out of alignment and I have 37 pelvic misalignment's. During the CRT he was impressed with how my thyroid responded being that I only have half left. To digress for just a minute, when I was a senior in high school, my mom noticed a lump in my neck. Long story short it was a non-malignant tumor that had to be removed and it took the right side of my thyroid with it. I have not been on thyroid medication until about 6 yrs ago. The only reason I was put on it was because I was growing more tumors even though the "function" was considered normal. I needed to keep my levels in a certain range to prevent tumor growth (at least that is what I was told). So during my second test, the bio-resonance scan, it was determined that there was cell replication at a faster than normal rate going on in my thyroid. That basically indicates more tumor growth. The hope was to slow or stop it before I left. So going back to today we tested my supplements and medications. Keep in mind I am on almost nothing right now, compared to what I was and I am okay with that. I don't know how much anything was helping. So in testing, (the brs again) it was determined that I did need my thyroid medication. However, when Dr. J picked out and tested my homeopathic supplements my test for the thyroid medication changed to not needing it. AND the replication no longer existed. So basically, I may be able to stop the thyroid med and not grow anymore tumors. Crazy I know but amazing at the same time. Basically we ran through what needed to be dealt with through the scan and I think viruses then bacteria and what ever else. So I started my supplements right there in the office and I believe I will be tested everyday to see how things are progressing. Then my treatment will be tailored to that.

My treatments today were essentially the same. I added the FAR sauna and the UVinator (I think that's the name). The massage was good. Dr J did do some adjustments today and some myofascial release. It was a different kind of chiropractics then I was used. Basically everything revolves around energy. It was good. I had problems going to bed last night but once I fell asleep I think I slept better. That is one little improvement. We decided we will only discuss my ongoing everyday symptoms during my daily doctors appointment. He won't bring up the symptoms that only happen occasionally. I have to let him know what is going on. It is all part of being positive. I believe I will get better. It will happen. That makes me excited. I have also had a wonderful time meeting some other patients including a family who is here for their teenage daughter dealing with Lyme. I had met them before we came on one of the Lyme groups and it has been so great to be able to talk with them in person. What an amazing journey this is for all of us.

I did the Ionic foot bath again today with different results. I took more pictures that I will post at some point. It is so cool to see it directly relates to how you are feeling or things the doctor is targeting. I had major toxins from the joints, which made sense because my joints were killing me this afternoon and this evening. I also had a lot of lymphatic stuff which we targeted today. So I guess that is about it for now. This headache is still nagging and I would like to try and sleep it off with out taking anything so a quick bath and off to bed. Until tomorrow...thanks again for the prayers, support and kind words. They are such a help and encouragement.

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.

The Mirror Does Lie

"The Lord is Kind for ever and ever; the nations will perish from His land.  You hear, O Lord, the desire of the afflicted; You encourage them, and You listen to their cry, defending the fatherless and the oppressed, in order that man, who is of the earth, may terrify no more." Psalm 10:16-18 NIV

I've decided to start my entries with a Bible verse, song, or some encouraging word. That way there is always something positive that you can take away. I have a lot of supporters who read this just to keep up with my journey but I also have a lot of Lymies that read this too. No matter who you are or what your circumstances are I hope you can find some comfort in the words I choose to share.

Moving on, things have been really rough lately. Not just physically but emotionally and mentally too. This disease lets nothing rest. I had the chance to see some friends I don't get to see but maybe once a year this past weekend. It was nice to have a chance to see them even if only for a little bit. They were eager to see me as they have been following along this journey. As seems to be the norm lately, I was told how great I look. I hear that a lot. I have even noticed myself, that I do "cleanup" pretty well. I'm sure people are just being nice but if there is  any truth to what they say then I can't imagine how amazing I might look if I was well. The truth that has just been in my face this past week is that the mirror lies. My doctor says I look good and I must admit sometimes I agree. It just makes it difficult to even look at yourself and think I don't look sick. And if I don't look sick how on earth can I feel so bad.

Again I have faced some really tough days. Yesterday I actually had to call in sick to work. I woke up in pain but had every intention of pushing through like I have so many other days. Then out of the blue, I got dizzy and nauseous and my heart was not happy. I had a bad headache and backache and didn't get off the couch until dinner time. There were moments yesterday where I thought I could be dying. Everything in my body seemed to dysfunctioning (if that's even a word). It gets downright scary. I find myself either praying to God to get me through this with out panicking and to just let me fall asleep. Then there are very brief moments when I think God if this is what the rest of my life is going to be like take me please. Of course I don't want to die right now. I want to be here with my kids and husband. I know I have something else to accomplish. There are just times when you physically feel like you body is going to just start shutting down and your not sure what to do. I got up off the couch to go to bed and ended up in the kitchen with tears streaming down my face from the pain. God, it is not okay to be in this much pain. It's not. I can't handle anymore pain. I woke up this morning so obviously I handled it or God handled it for me I guess.

All of this once again raises concerns about the future. Will I ever be able to work again full time? Right now I don't see that in the near future. I don't know that I see that happening this year. That really leaves a lot to be discussed.  Once again the financial strain that this has caused my family just adds to the stress. This stress is felt by my parents as they have taken us in and on multiple occasions had to come up with hundreds of dollars for treatment and doctors. I find myself maybe hiding the truth. I don't want to run to them every time I run out of a supplement or medication and don't have the money to pay for it. In a perfect world my supplements would be a standing order shipped every month with no questions asked. The money would always be there. As I have said before this scenario is true for almost every person with Lyme out there. Although there are some rich and famous people that have been afflicted with Lyme there stories just don't seem to be as bad. I have to believe that is largely in part due to the fact that can seek the meds and the treatments that the rest of us can only wish for. Maybe I am totally wrong but I am not the only that feels this a disease for the "rich". The insurance companies are not on your side. As a wife and a mother I struggle with putting myself first. So when I have to look at what the cost of treating my disease maybe taking away from children it is hard to put it first. My kids deserve so much more than they have gotten that it is hard to know that I have taken something away from them to try and fight this. It wears on your mind. I mean if there isn't a cure then am I just wasting time and money? I know that is not the case. I believe I may be able to get back to fairly normal life. I am not ready to give up but this just shows you the kind of head games you can get sucked into with this.

My one doc is out of town until the middle of July so I set up a regular appointment with him for when he returns. Although he usually pops his head in during my IV it is not a true appointment to reevaluate where we are going. I also need  to schedule an appointment with my LLND. I guess I need to have the discussion of if I can't take or do everything what are the most important or beneficial things I can take or do? I have also scheduled an important with a cardiologist who is supposed to by Lyme knowledgeable or friendly. I just can't shake the concern that Lyme is damaging my heart in some way that we just haven't seen yet. What test have we not done? I mean all of the other cardiologist said my electrical issues were not life threatening and I didn't need to be concerned that my heart can go over 200. Although the cardiac specialist had never seen a heart rate as high as mine had gotten, 272 bpm, I should not worry. The only issue with a high rate like mine is that the heart muscle may wear out quicker than normal but again I don't have anything to worry about. Does that make sense to anybody? Plus the leading cause of Lyme related deaths, besides suicide, are cardiac issues. The few I have heard about don't seem to be people that got deathly ill and died without having a chance to undergo treatment. These are people, that had lyme for a long time, like me, and were in ongoing, long term treatment. Maybe even a few years into treatment they lost the fight. I just want to cover my bases.

I'm still working through this all as you can tell. This has certainly been the longest roller coaster ride I have ever been on. I question too how soon I can afford and should I get my kids tested. I don't want them to go through what I have been through. Part of my wants to stop my treatment and focus on them for a while. It's like the scenario on the plane of putting your oxygen mask on first. I can see it both ways. If I'm not better how can I support my children should they be diagnosed. Then again, if my treatment drags on for years, which it certainly looks like it is going too, how much damage could I be doing to them by not getting them treated right now. Lots to pray about and figure out.

Well I think I have thoroughly exhausted my brain for now. There is rest that is needed, plus errands to run and even a quick trip into work today and tomorrow. I hope everyone has a great fathers day weekend. Please let you dads and husbands (if they are fathers) know just how much they mean to you. To all of you, whose dad has passed, my heart goes out to you as this can always be a tough day. Thanks for all of the support.

I'm Nuclear

So I am still hear. 3 weeks down at a work and I am still alive. In some ways it feels barely alive but alive none the less. I have some good and some what interesting news from the doctors office. I got my heavy metal test back and the doctor was fairly happy with the results. I am only slightly high in 3 things. That is the good news. The interesting news has to do with the 3 things I am high in. One is aluminum. I guess the most common source of that is cookware. Deodorant is also a source. I didn't think we had aluminum  cookware but I could be wrong. Guess I need to look into that. The other metals are really weird. I am high in uranium and something called gadolinium. Both of those are used in different nuclear applications. Could someone please tell me where I am getting exposure to anything nuclear? I am surprised I am not glowing in the dark. Hopefully the doctor can shed some more insight on that subject.

I have got to say that my symptoms have been really noticeable still. I have definitely had an increase in fatigue. I slept about 4 hours during the day about a week ago and I was in bed by 5:30 a couple of days this past week after work. I have been having a lot of headaches and sore throats. The pain, well there is not much to say except it is bad. I have had very few days in the past 3 weeks with no pain. I at least have it at night if I haven't had it earlier in the day. Some days it has been bad muscle aches, in my arms again which have been gone for quite a while. a lot of it is the bone and joint pain everywhere. This morning in just two fingers I am getting waves of joint pain that takes my breath away it is so intense. I've had some burning nerve pain again and the left side of my face starts going numb. It is so hard to figure out why the increase in some of this stuff again. I am still thinking it is from the new medication I am on. I guess the good news is I would take all of this to mean it is working and getting rid of some more lyme or co-infections. The frustrating part is of course how long will last or how much more do I have? The doctor said when I felt consistently good we would do the IV for two more months. Although I have made some improvements I don't consider this consistently better. In some ways it is hard to come up with a definition for that. I guess this is where good tracking of my symptoms comes in to play. Then I can hopefully look back and see a difference on paper.

I am also going to try and work harder at doing things that may help me feel better. I know you probably think...Well duh! Why wouldn't you be doing everything you can to feel better. As I have said before, this disease can become like a full time job. Dealing with the symptoms, getting enough rest, and taking all of your meds and supplements can take up all of your time. My husband just asked me the other day if I am doing everything I can to get better? I would like to think I am but I guess if I am totally honest about it I am not. I am going to make an even greater effort to do the things that may help me get better or at least feel better. That means drinking plenty of good water, eating lots of greens, doing my protein shakes, cutting the junk, working out at least twice a week, rebounding, dry brushing, and Epsom salt baths (on days I am not using my port), plenty of rest, buying my portable FIR sauna and using it on the days my port is not accessed, thinking positive, taking all my meds and supplements everyday no matter what...I think that covers almost all of it. Well I guess I am going to try and do all of that I better get off the computer! Have a great Memorial Day weekend. Thank you to everyone in the military, past and present, some of which have risked or given their life that we might be free. God Bless the USA!