Saturday, December 31, 2011

I'm Off to See the Wizard

As 2011 comes to a close I am really looking forward to starting 2012. This is by far one of the most interesting starts to a New Year I have ever had. I must admit that I am a little emotional and having a hard time at thought of leaving of my family for two weeks. That is a long time to be away from your spouse for sure but it seems like an eternity to be away from your children. I have at least one friend who knows how this feels. He has had to leave his family for the same reason I am leaving mine, in pursuit of getting his health  back, which in turn means his life back.

Going to see Dr. Jernigan and the whole team at the Hansa Center in Wichita Kansas is a gamble. Like most things in life there is no guarantee. I stand to lose two weeks of time with my family, and almost every last dollar I have for treatment on this trip if it is a failure. But I stand to gain my health and my life back if it is a success. The gains exceed the risks for me. I believe whole heartedly that God has brought me to this point for a reason. I have faith this is exactly where I need to be. As nervous as I am, I also couldn't be more excited. I have no doubt I will learn so much and my eyes will be open to some new ideas and new ways of thinking.

This two week jump start on 2012 is just the beginning for me. As I am still struggling with the fact that I lost my career with the Fire Department that I loved, I am also reminded that I have a world of opportunity at my finger tips. I can revisit the dreams and goals I had that got lost along the way. I can pursue whatever my heart desires now that so many things have been taken from me. I am choosing to see this as a blessing and an answer to a prayer. Not only did God answer my prayer to come home and be with my children (although not is the way I pictured) he reminded me of the things I am passionate about. He reminded me that I had a love and excitement for things that I had long since forgot about. I am excited about my life again and about what the future holds. I feel like anything is possible and I am ready to take on whatever comes my way.

With that, I have some last minute packing to finish and some much needed time to spend with my family. I will do my best to blog about my experience regularly. It all depends on my internet access and how I am feeling. Regardless, you will end up with a full account of my experience. You can continue to support my treatments financial needs through my photography, my donation website, (both have links on my blog) or by donating directly to my donation account at any US Bank (Jessica Madson Donation Account, #153466674998). Of course I always appreciate your prayers, especially extra ones for a safe trip. I want to end by wishing you all a safe, happy, and healthy New Year. Praying God's blessings and protection for you and your loved ones.

Thursday, December 15, 2011

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.

Saturday, November 12, 2011

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 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?

Monday, October 24, 2011

An Exciting Disappointment

I have a lot to update you on but I am going to do it a little backwards. Some amazing friends put together a fundraiser for me at the Belly Up Tavern in Solana Beach. It is a very cool place and I will give you the details in a minute. Let me start with what happened today. I was forwarded an email by one of the event organizers. The email was sent to the Belly Up from the tv show EXTRA and they wondering how to get a hold of Jessica. They used a different last name but the Belly Up assumed it must be me since we just did my fundraiser. Now I thought it was weird because the only show EXTRA I know of does celebrity gossip type stuff. Either way I kind of freaked out. I prayed that if this was meant to be that I do the right thing with it. I must admit though I am a big dreamer. I mean I don't sit and daydream my days away. But I guess I have a wild imagination and more than once I have spent time planning on how I would spend my lottery winnings, or what it would be like to live in the HGTV house that they give away. I have recently been planning on what I would do with my Publisher Clearing House winnings, however I have yet to enter. So you can see how easily I get myself wrapped up into these ideas and I can get really excited. My head was spinning with ideas on what I would say, what I would wear what this would mean for my family and the Lyme community. So I emailed the rep and gave him my info. Shortly after my email I got a phone call. I answered the phone and was talking to this person from EXTRA. It was obvious very quickly I was the wrong Jessica. They wanted a Jessica that had talked to Prince Harry. (He had been at the Belly Up the weekend before). Very quickly my excitement turned to disappointment. I knew it was a long shot but for about 30 minutes I was on cloud nine.

Onto the fundraiser. I have some amazing friends. I will say that the Fire Prevention Division of the Fire Department is kind of like the "red headed step child" of the family. It doesn't really matter though. My amazing Fire Prevention buddies of the last 11 years have been a big support to me and family. Yesterday was no exception. They put together a fundraiser with a couple hypnotists that work for some local Fire Departments at an amazing venue called the Belly Up Tavern. Although the crowd was small the love and support from my friends and families was amazing. Plus the show was really funny. I haven't laughed that much in a while. It was a great time and I could not be more grateful for the amazing people that God has placed in my life. I would say the fundraiser was a great success and we can certainly continue my treatment for at least another month.It's not enough for me to get to Kansas but I am still hopeful. I am blessed beyond measure. I have a lot of thank you cards to write.

Now for a treatment update. Well this wonderfully expensive IV antibiotic has been given me a little bit of a rough time. I have heard some good things though and been encouraged to keep it up as long as I can. I will start by saying my first month order from Target got screwed up and when I went to pick it up they told me that it was $4000. How can there be that much difference between brands and generics or whatever. So they had to reorder the right stuff which only took a day and I got 30 doses for the bargain price of $1427. My doctor is still searching for a cheaper place to get it. Totally praying we find that before this month runs out. I went in for my first day a few weeks ago and was in for a little bit of a surprise. First off this medication is bright orange/red. Perfect for Halloween I guess. I found it fairly quickly it changes most bodily fluids that color. (TMI I know) The funny thing is, it may change my tears colors as well. My husband has been trying his best to make me cry to test that out. Wonderful! No such luck yet. The other surprise is that is has been hard on my stomach. I assumed with it being an IV it would bypass my gut but no such luck. So extra probiotics have been in order and it seems to finally be settling down. I have felt fairly bad for the last few weeks and I think it is about time for my lyme flare so I think I have been feeling pretty rough for about 6 weeks straight now. Some old symptoms are back. I have continued with some bad twitching/seizure episodes, the creepy crawlies, constant nausea, needing to nap, insomnia and some other stuff. Plus I have had some new symptoms like daily headaches and my sound sensitivity is getting worse. Even white noise type sounds hurt my ears. So that has been a little aggravating. Plus for about the first 5 days, my IV's were taking about 2 hours. I discovered I can handle a higher drip so I now can get it done in about an hour. My skin is not happy about my bandage though. No blisters yet but I am worried that having it on there everyday with only about a 24 hour break is not going to work so well. Time will tell.

I got to attend the San Diego Lyme Walk with my mom, two daughters, and my friend Dawn. That was nice because I got to meet some other Lymies in person that I have been chatting with on-line. I also got to meet some new Lyme patients in my doctors office. All I can say is there is way to many people with Lyme. At least 9 new patients getting IV's just since I took my little break. From a mom whose 14 yr old daughter is getting a PICC line and has had a really rough time since she was 10 to a mom who was just diagnosed, is in a wheel chair because of it, has had it about as long me, and found out she gave it to her 20 yr old son while she was pregnant. Then there was the family I met today. The sweet man must be at least in his 70's. He was diagnosed with Parkinsons after some health problems the last 5 years or so. The couple is from South Dakota and staying with one of their children while he gets treatment. They have been for here since May. It just breaks me heart but we a group that really supports each other. There was 5 other patients getting IV's during my first one with the new abx. They all wanted to know what I was on and some of them are headed this direction. The other day I got in and out early but there were 9 people with Lyme on the schedule for IV's. Very sad, but we keep each other entertained in the "IV lounge".

On a different note I got to help out a food packing event with an amazing group called Friends and Family Community Connections. My family has been involved with this local non-profit for a number of years. My dad has gone to Tanzania Africa two or three times and helped build schools for the children, bring them food (that is who the food packing us for), etc. I am so proud of him. So we got to help at another food packing event this weekend and I was reminded how much I like helping people in need. I have decided to try and spend some of my "free time" volunteering in ways I haven't really been able to before. I am really excited to see what opportunities I have to help others. It will certainly help me stay positive and not focus on my illness so much. I am looking forward to helping at Operation Christmas Child at our church next weekend. KLove radio will be there and it should be a great time.

I'm going to end with a plug for I saw their booth at the food packing and took the following pledge. I encourage you to check them out. I believe in the power of a positive attitude and possess the courage to cause positive change. I will exhibit humility when I triumph and strong character when I fail. I will begin every day with a sense of gratitude for my gifts and the desire to use them to their fullest. I will end every day with the satisfaction that I gave it my all. When I fall short, I will respond with integrity and determination to improve. I will strive to inspire others to adopt a positive attitude as I commit my talents and influence to have a positive impact on the world I touch. I Am Always Positive!

Friday, October 7, 2011

A New Normal

It has been a week and a half since my last day in the office and I am still trying to settle into my new life. What my new normal will be I am not totally sure. I guess it will take a little while for everything to fall into place. So much depends on how I feel and some of it depends on money. The good thing is I will have the time, when I feel good, to volunteer. I am so excited about the opportunity to help other people. I started today by volunteering in my daughters kindergarten class. That is always fun. I already have some other opportunities showing up. I guess I will see where things lead and just take it one day at a time.

The silver lining in my job ending was the timing. I am getting my butt kicked. New symptoms have shown up and old symptoms are back. I guess I didn't realize that my temperature issues had left for a while but with cooler weather settling in, I am once again finding I can't regulate my temperature very well. My hands and feet and cold most of the time. So cold in fact that I have to take a hot shower or bath to warm up. The problem becomes that I get so cold so I jump in a hot bath and an hour later I am sweating and can't cool off. Dealing with frozen food once again causes me excruciating pain. My joints are cracking and popping with increasing frequency. The muscle pain, weakness and creepy crawly feeling is back. The ringing in my ears is worse. I have muscle spasms everyday. I now have what seem to be tension headaches everyday. The list goes on and on. Very frustrating to say the least. Oh my insomnia is coming back and I am sleeping during the day, almost everyday. At least this past week I have felt almost as bad as I did during my worst time last year. I am not different than almost any other person with Lyme out there. We all seem to go through the same thing. You think you have turned a corner and then BAM you are knocked on your butt once again.

I saw the doctor yesterday to get my port flushed and to check and see where we were on this IV antibiotic deal. He still really wants me to take it so we are continuing the search for an affordable source to get it from. He is currently trying to work with an Indian Reservation back in the Midwest to try and get it. In the meantime, my parents decided that they didn't want to wait for me to start this and that we would find a way to pay for at least one month of this med from the pharmacy. By God's grace some amazing friends were able to pull together some money and although it would have covered 2 to 3 months of meds from Mexico we have ordered it up here in the States. Some came in today and the rest should be in on Monday. It looks like the month will cost us $1430. That is about $600 less then the other pharmacies up here but still not cheap. Especially if he wants us to do 2 to 4 months. At the appointment we discussed doing this new IV med called Invanza. He really wants to finish with a few months of that. However that med is more expensive at about $70 bucks a dose. Again, 2 to 4 months, IV everyday. So once this process starts I could have daily IV's for 4 to 8 months. God help me. That also means 2x a week to the doctor. That adds to the gas bill for sure. Maybe I need to buy a scooter. Haha. That would so not be smart. Anyways, so the doctor says, if you guys can pull together about $10,000 that should be good. I almost laughed out loud. I just have to remember I serve a big God and things are going to work out the way they should. He has already done some amazing things and will continue to do more I am sure. It makes me want to set my goal at about $20,000 so I can also try to go to Kansas. Just giving to God. He knows what I need to do and how this will work out.  We did discuss a little more about all of those viruses I tested positive for. So basically I have all of those bugs in my system. There isn't a for sure way to test if they are active  or not but they can become active if my immune system goes in the gutter. So I am praying that I can hang on and not reactivate any of those. I also had another blood test come back since my last visit that showed my inflammation levels are high. It is the C4a. Even though it was like double the normal he has seen much higher. That level probably makes sense for how awful I have been feeling. I also finally got a prescription for some pain meds. I went very mild with 400mg ibuprofen. I can double up if I need to. Most days I take nothing but there are days I need something. I was so hoping to not add pain killers into the mix but some days I will have too. The plan now is to start the new IV med on Tuesday and go from there.

I once again am trying to work on my diet. I found a great book called "Recipes for Repair" which is a cook book based on the Lyme Inflammation Diet developed by a Lyme Doctor. To give you a quick over view, there are four phases of the diet. The first phase is the most restrictive but it is only a week long. The diet of course cuts out or reduces sugars, gluten, dairy etc. So I have managed 3 meals so far and I am still alive. The good news is my husband is trying to go along with it. I really appreciate his effort. In order to give my self the best chance of sticking with this for any amount of time. I did have to give myself one little break. I still get to have my non fat mocha everyday. For anyone that knows me, or even if you have read any other entries, you know I am a hard core junk food junkie. So if a nonfat mocha is the only thing not on the list I have then for me that is amazing. I will say, the book tells me the first couple of days I might not feel great and that it will take 30 days to stop my sugar cravings. So I am hoping I can stick with this. The hard thing is it does take aways dairy and gluten for almost a month or longer also. So everything I love to eat is being taken away but I am realizing I need to go above and beyond to help my recovery.

I guess this brings my story up to date for now. I will certainly let you know how the new abx works, etc...Please check out my photo website if you haven't or my fundraising page. For those of you in the San Diego area our annual Lyme Walk is next weekend at Sea Port Village. The Lyme community would love to have your support. Then the following weekend my amazing Fire Prevention friends have arranged a fundraiser for me at the Belly Up Tavern in Solana Beach. There will be a hypnotism show and some great fun. It is on Sunday, the 23 at 3:00. Check out the Belly Ups website for more info or you can e-mail me at for more info. Thanks for your support and keeping up on this crazy journey of mine. One last thing-Don't forget to watch "Under Our Skin" on Netflix, Hulu, some on demand cable services. It will really open your eyes to what is going on and awful reality of this disease. Love you all.

Friday, September 23, 2011

It's going to be a long road- UPDATED!

Faith is moving ahead before knowing how! (from Rick Warren I think)

Sometimes I swear I hear the Jeopardy theme song playing in my head. It makes me feel like I am running out of time. Part of that is due to the fact that I have been holding onto a piece of news that I want to share but haven't been given the official okay to do so. I was supposed to get the go ahead yesterday and it didn't happen. Go figure. At this point the actual "thing" may have taken place before I am allowed to speak. So maybe by the time I get to the end of this update and I can throw it in. Otherwise you may get a one or two sentence update later.

*So here is the news I have been holding onto. Lyme has robbed me of some things in my life but this is a big one. As of October 5th I will no longer have a job. Lyme has robbed me of a 13 year career in the Fire Service. I am not going to let this latest thing keep me down. I have to believe God has bigger and better things for me but I will admit it hurts. I always figured that if I left the Fire Service it would be my choice. This was certainly not my choice. I will miss my Fire Department family more than most people will know. All though I have worked at a couple of different agencies in San Diego, it has been my privelage to serve the San Marcos Fire Department for the last 6 yrs. Thank you all for your support during this rough time in my families life. We will be forever greatful.

So let me move onto what I can tell you about. I can tell you that the last two weeks that I have been back on abx have kicked my butt. So many of my symptoms that had diminished have come back. I guess that means there is a mass murder of bugs going on so that is part is good. It is what I have to endure that is not. My mini seizures or twitching, the weakness and creepy-crawly feeling in my arms, insomnia, needing to sleep during the day, the list goes on...have all come back. The muscle spasms and ringing in my ears is probably the worst it has ever been. I am not back at my worst but probably not far from it.

With that being said, when the doctor asked this morning if I had any improvement I had to say no. He responds that I am "a tough nut to crack". Ya think! I could tell he is frustrated for me. We discussed a number of different things at this quick visit so here is the run down. He doesn't have a strong opinion on that MRS 2000 mat thing that I tried a month or so ago. He says it works for some, not for others its just up to me if I want to try it. He is not as supportive of HBOT therapy as I thought. He is not against it but has not seen any real results in his patients that have used it. He prefers a cheaper therapy called ozone instead. You have some blood taken out, ozonated, and put back in. (I know that's not really an explanation but the general idea) It is supposed to do some good things. He definitely likes the Rife, coil, what-ever-you-want-to-call-it-machine. He gave us the name of one to check out. So I need to look into that when I am done here. We definitely talked about this IV rifampin deal. As most of you know, we still haven't been able to get this medication. Up here in the states, it would be about $4000 for 2 months and my insurance won't cover it. In Mexico, it should be closer to $600 for 2 months. We just haven't been able to track it down. He believes in this so much though that he still wants us to try and do this. So we are continuing to tap our family resources through friends and contacts to find it. My doc is trying to go through a Mexican hospital and see if he can buy it himself. I am just praying we can get this soon and get going. We are prepared to make the trip we just need a location that has it. He also clarified the 60 days straight would be a minimum. To really give it a shot we should go for 120 days straight. Minimum of an hour a day for a 120 days...sounds like fun. Guess it would be a good time to read my Bible. Then we may switch to another IV med, that is knew. He basically called it "super rocephin". Needless to say it looks like I won't be done with IV's anytime soon. He did say I should be doing fish oil and also to try something new...bamboo extract. Easily have to be at about 40+ pills a day when I am taking everything with these new additions. You wouldn't think I would have any room left for food. I know you have heard it before, but once again I am going to try to buckle down on the diet. That is probably my biggest challenge...quick/easy, taste, and money have always won out over the alternative. So I will try once again to change my eating habits. :)

I know this maybe backwards but now on to the real reason for my appointment today. "Your blood tests are too complicated to give you over the phone, the doctor wants to see you." That is the message I got from my doctors office earlier this week. Too okay. I figured it meant something was not "normal". With this disease though nothing is ever normal. So after we discussed everything else I asked for my complicated results. My CD-57 is up to 60. So that is good. It needs to much higher but 60 at least means my immune system may be functioning on some level. Candida levels were good. YAY! Vitamin D is finally normal. So 15,000 units a day of Vitamin D it is for me. Now the not so great news. I have high/positive tests for four other viruses. Now this wasn't a complete shock since I know a lot of Lymies have these issues but it still doesn't make me happy. It doesn't mean that these are infections are current but they are present in my system. I don't know enough to say how common it is for them to reactivate or what even their dormant presence does to my system but bottom line is I don't want four viruses, two co-infections, and lyme hanging out in my body. That is a lot this body has been enduring for all of these years. Here is the list...Human Herpes Virus Type 6 (HHV6), Epstein Barr Virus (EBV), Mycoplasma Pneumoniae, and Chylamydia Pneumoniae ( and no this is NOT the std). The last two are forms of pneumonia which I have had at least twice growing up. So anyways, maybe this plays into why things haven't been as easy to solve. I haven't made the improvements the doctor expected.

Lots to think about for sure. With that, I guess I will have to come back a little later with my other piece of news. Still waiting for the official okay to say something. I guess nothing super bad will happen if I spill the beans first but I am using my patience and waiting until I am supposed to.

P.S. My wonderful extended "family" is working on a fundraiser to help my family out. I will keep you posted on the details as I get them. Thank you for all your hard know who you are! I love you all.

Friday, September 9, 2011

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 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.

Tuesday, August 23, 2011


Well it has been a couple of weeks since I last update. You know I don't usually read what I last wrote so if I repeat myself, I'm sorry. Things have continued to backslide somewhat as far as my symptoms go and everything is so up in the air. I won't be dealing with work issues until at least next week. As much as I am trying to just trust God and not worry about it I catch myself getting a little worked up. Bottom line on this issue- financially I need to keep working (at least from my earthly perspective) health wise I probably shouldn't be working. I have been having a hard enough time keeping up on everything just being back at work part time. I am not great about  getting all of my pills and stuff in and this is while I'm on the antibiotic break. I can't imagine what life is going to be like working, with kids back in school, and going back on IV's in two weeks. Not looking forward to it all and I think I have been stressing myself out about it a little.

I feel like since I stopped my meds that I have started to regress. The seizures/twitching are definitely back, pain is back, muscle spasms have increased, memory and brain function just plain suck, fatigue is getting worse, weakness is increasing, heart issues, dizziness, on and on and on the list goes...At this point I am feeling like very little progress has been made.  Just last night I had one of my really weird episodes where I can't help but wonder if I might die before the morning. It is so hard to explain but you feel so strange. It's almost like you feel your body is shutting down. I don't know if its the second heart med or what but my heart rate got down to like 61 which started to freak me out a little. When you consistently run at about 88 bpm or higher and now you feel your heart pounding while you are watching the rate continue to drop, let me just say it's not exactly comforting.

I love my doctors and I have to have faith that they are doing the right things but I can't help but wonder if I am missing something in my treatment. I know this may be a forever battle on some level but I had hope at some point that I would get some of my life back. At this point I am not so sure. It's not that all hope is lost but I can't express how disheartening it can be when you begin to wonder if this is as good as it's going to get. I believe some of my frustration comes from realizing some struggles I have had and maybe some missed opportunities in my life have been because of this awful disease. I just didn't realize it at the time. I try not to spend a lot of time dwelling on the past and looking at everything Lyme has taken from me but it surfaces now and then.

I know God sees the bigger picture and has a plan and I am trying so hard to be okay with what that plan is. But in my heart of hearts, I am afraid this thing is going to take my life. I prayed last night that I be okay with whatever God had in store. I told him I wanted to be hear for my kids and that I felt I had more left to do but if it His will that I be taken earlier that I could have ever imagined that I needed to be okay with that. It was surreal to be uttering those words. God please don't take me yet. I don't want to die.

I am looking into a center in Kansas that I can go to for treatment. Of course my fear is the cost. I am sure it will not be cheap. My parents ask me all the time what else can we be doing to get me better. Frankly, I don't have a clue. I don't know where to go or what to do next. I guess I need to try and get my husband or parents or a friend to help me figure this out. I just realized that I (the control freak) have done almost all of the research and really run this show with selecting doctors and cluing everyone else in on what is going on and how to try and fix it. My husband and dad did learn some from going with me to get my IV's in the beginning but I don't think they have ever really researched this disease. I am blessed to have as much support as I do but I guess I am actually admitting I could use some more. I would love for someone else to research all of this specific to me and suggest something. Sometimes I feel like I am pulling teeth and torturing friends and family, telling them about lyme, asking them to watch documentaries, etc...Anyways who knows what will happen next. I need to call or e-mail Kansas now. (It's called the Hansa Center for anyone who is interested)

Well I guess that catches you up a little bit. Frustration has been my primary emotion lately and as you can tell I am physically getting my butt kicked again and I just am not sure what to do next. Just gonna keep moving forward one moment at a time. Lord knows this disease operates that way and I have gone from fine to bad in nothing flat. Just keep me and all the other lymies in your prayers. My heart breaks daily for everything that some of my friends are going through. From being severely physically ill to lack of money to no support...hang in there friends we will get through this.

Tuesday, August 9, 2011

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 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.

Tuesday, July 26, 2011

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.

Thursday, July 14, 2011

Changes and Blessings

You might have noticed I changed the title and description of my blog. It has been something I have been thinking about for a little while and now just seemed like a perfect time. That doesn't mean that the content of my blog is really going to change. I just think it is important that I help myself break the my identity as only a lymie. Lyme disease is something I am I will probably think about everyday for the rest of my life. As long as this disease is active it will always be at the forefront of my mind. I just need to remind myself that I am not just a lymie though. I was a daughter, friend, wife, mom, fire inspector, etc...all before I could identify myself as a lymie. Because lyme affects every part of my life it's virtually impossible to separate it all. I hope you will still keep up with my journey.

The title of my blog isn't the only change that I have going on. After seeing my doc today it looks like some more changes are in my future.I updated my doc about my appointments with my llnd and the new cardiologist. He wasn't really happy about my new heart medicine. He feels that any of the heart meds are just a band aid to the the problem. I would have to agree but no one has given me a better solution to my heart problems. I still don't know the cause of my heart issues. It may be lyme or one of the co-infections or something else. At this point we just don't know and may never know. At this time I am not going to stop the new medication but I am going to try a form of meditation and see if it helps. Quite a while ago, in the midst of my heart trouble, I found something called the Institute of Heart Math. I wouldn't know how to explain it but I would say look it up. Anyways, my doc brought it up to me and explained a little about the science behind this meditation practice of heart centered breathing and focusing on something positive, something that makes me happy. Basically this practice is supposed to be able to change the way my heart is functioning. It certainly can't hurt. I am hoping to find my heart monitor so I can better track my heart rate and hopefully I will be able to see a noticeable difference.

Next we discussed the fact that I don't really feel like I have made much improvement in the past few months. We discussed my llnd's opinion on my need for detox. I told the doc that I am getting a sauna( should be here tomorrow YEAH!). He was very excited for me and I have heard from a few people that it made a big difference in how they felt so I am praying this will get me headed in the right direction. The doc put me on selenium, vit a, and zinc which all should be helpful. Then came the biggest change...we have decided to finish this week of IV antibiotics and that stop all antibiotics for 2 months. The plan is to go 2 months off, 2 months on, 2 months off, 2 months off and be done. I am so excited and nervous at the same time. He also has me starting diflucan during the months off. The way the doc explained it was the diflucan will paralyze the bugs and keep them from dumping toxins when I start the meds back up. I have to talk to some other lymies and see if they have done the diflucan and how it has worked. I didn't get to read like normal during my IV today because I ended up talking to two lymies. One lady I have seen before. She is has/is really sick but her lyme is actually in remission. She is just dealing with a bunch of other stuff from being sick so long. Then a new lymie that I have met on the computer came in. She just started her IV this week. It was nice to connect in person. the sad thing was the nurse told me 3 new patients start IV treatment for lyme next week. This disease is everywhere and can affect anybody. Just blows my mind. Anyways, I am excited to see how the next month or two goes. The change is perfect timing with the sauna coming in. Now I have more freedom to use it. I am going to try to get back to the gym also and just do whatever I can to help this detox process along. I will say I have been very consistent with my protein shake and I feel like I am starting to cut some of the other sugar out. That is a huge accomplishment for me. Yeah for that too.

The doctor did write a new note for work. The new note however says that there are going to be no changes to my work schedule for at least 3 months. I have to take this new note and meet with HR and the Chief tomorrow to renegotiate. I know I will be super nervous but I am really feeling like it is out of my hands. Essentially, even if I can increase how much I am working at the end of 3 months I won't be full time/full duty with no restrictions for at least 8 months. That my just be a deal breaker with the City. It is what it is and I am actually feeling comfortable with however things go. I'll try to update after my meeting tomorrow, so stay tuned. There may be bigger changes yet to come.

I wanted to end by sharing how blessed I am. Through this entire ordeal I have been blessed. I can look back at my darkest moments and see that I was blessed even when it didn't seem like it at the moment. I have started reading a book called Life Interrupted that has been a huge help. I just feel like God has been working behind the scenes and I am starting to get a glimpse of what may be coming. It certainly makes me excited. I am ready for some big changes. I still have my ups and downs. I still have some moments where I feel like this situation is hopeless but they seem to be brief and I just am starting to get excited about what the future holds. Can't wait to share more of this journey in the coming weeks. Keep the prayers coming. I can still use help in paying for medical bills. How sad that I would say for my birthday I would like help paying for my medical bills but it is true. You know where the donate button is. Here's to hoping you all are having a great summer and that life is treating you good.

Friday, July 8, 2011

Detox is the key

I guess it is about time I post an update. It has been a few weeks and I just haven't been able to get around to it. Well, there was a time or two I could have but it just so happened that my brain was not cooperating at that moment. So today I guess the stars have aligned and I feel well enough and have the time to complete this task. The one thing I am really bad about with my blog is going back and reading my past posts. I apologize in advance for repeating things a bunch of times but rereading my last few posts each time would just make me tired and then I would never get around to a new post. Of course I am now wondering where to begin...

Let me start with my appointment with my llnd. In the past I have usually done phone appointments because it was just easier. My doc just moved to NY and opened a new office in Connecticut so she isn't in her San Diego office as much (a week or two a month) and it is kind of a drive. This time though, I decided to go in and see her. If I am totally honest, I really wanted to meet her new puppy and office dog, Harry Winston. I believe he is a Kingsley and he is so cute. He is from Australia just like my doc. Back to the visit- it was good to see her in person. We typically go over current meds, supplements, and symptoms and figure out what to do. This time though I had to ask what supplements were crucial and what were negotiable or could I get a generic brand of. I am spending about 400 dollars a month on her supplements alone so if I could reduce that price it would helpful. We decided I could make a few changes but they may have cancelled each other out. I can stop taking the teasel root and the CogniCare but I added in a herbal detox formula. I also added in liquid glutathione but I haven't started it yet. My doc also gave me so diatamacous earth (I know I probably spelled it wrong). She had just gotten a big bag in that she was going to try so she sent me home with some for free. I haven't tried that yet either. Just taking it one thing at a time. I would really like to keep at least monthly appointments with her it $125 a visit. I just can't pull that off. My family is already trying to come up with $1000+ a month. I know for some people that is on the low end but in any case most people don't have that kind of extra money every month. Let alone the fact that we are still short over 50% of my income. I just squeeze her in every couple of months, which has worked so far but I do wish it could be more.

After reviewing all of my symptoms and everything it was decided that we are probably doing enough bug killing but not enough to help me detox. That of course would be why I started on the detox formula. We talked about my diet which I admitted sucks. She said, lets not focus on taking things away then. Lets focus on adding them in. First thing I was asked to do consistently is have a protein shake. So far, I have been fairly consistent. I also came up with a new recipe that I absolutely love. The real test of it will be later today because I just got my chocolate protein powder but here is what I have been doing. I love my coffee in the morning, even though it is decaf. I always have some type of mocha and I was usually buying them and not making them myself. I began wondering if I could make a protein mocha and lets just say it is my new favorite drink. One of the things I have mentioned before I am supposed to do is cut out sugar, which has been fairly impossible. In some of my research, including that primal diet my other doc suggested, I found out about heavy cream. It is a wonderful thing. Rich and creamy with no sugar. If I cut out the sugar as much as possible and reduce some of the carbs the fat is not supposed to be an issue. This gave me the idea for my iced protein mocha. I make extra strong decaf coffee especially if I don't have time to let it cool down and a few tablespoons of heavy cream and protein powder. Shake it up and pour it over ice. Now I get my protein and my coffee all at once. I will admit I had to finish my vanilla powder so I was adding some Hershey's which wasn't reducing the sugar. With the new chocolate whey protein powder I should be getting about 20 grams of protein and only 1 gram of sugar. I was originally also adding non fat plain greek yogurt but that bite of the yogurt wasn't so good. I highly encourage you to try it.

Sorry I got a little off topic. I tend to get long winded when I haven't updated in a while. Back to detox. I have looked at other things that are supposed to help with detox and long story short I am trying to get one of the Far Infrared Saunas. I know a few people who have the portable tent or tube type and they seem to work just fine. I am not saying I wouldn't do one of those but my parents are looking at the big ones. I mean it is a one person one but is made or cedar or hemlock, has music, and air purifier, and light therapy. It was perfect timing with our big county fair that was just here. There was a company there selling them and I am praying my parents are able to pull off getting me one. The cool thing is the whole family (except the kids) can use them and benefit. I llnd highly recommends them and so does my other doc. I have used on a couple times and they are amazing. So we will see. If you haven't read up on them I highly encourage you to do so. You can just look up FIR Saunas and you will find a bunch of great info. It actually looked like I might get one before the fair left town but in looking at them my dad became concerned over the mention of certain heart patients not using them. I tried to reassure him I was good to go  but he wanted me to triple check. Since I was going to see this new cardiologist he said he wanted to wait and see what he said. So I checked and he didnt' care. So bottom line, bug killing will continue and the main focus will be detox. I do see my other doc this coming week and will get an update from him as well.

Sorry this post is so long but a lot has gone on and I want to catch up as best as I can. So I did go see a new cardiologist yesterday. This doc was recommended by a fellow lymie and is at least lyme friendly. Now have covered a lot of my heart stuff before but to recap as quick as I can...I have had a high resting heart rate for quite a while but it was never bothersome until the last 5 years or so. I started having major palpitations, tightness in my chest, and be short of breath after climbing one flight of stairs. We started a physical fitness program at work through a grant we got and it was during my first stress test that I knew there was a problem. I failed miserably, being short of breath and having my heart rate be at about 217 less then 7 minutes into walking up hill on the treadmill. Started seeing a cardiologist and wearing monitors and running tests. Must be inappropriate sinus tach. We decided to do nothing that first year. Next year and I get on the treadmill again only to have to stop about 6 minutes in with severe left sided chest pain and a heart rate of 272. You read right 272 beats per minute. I ended up getting an ambulance ride to the ER when a few hours later my heart rate was still 150. Saw an electrophysiologist (cardiac electrician) and again IST was the diagnosis. It won't kill me. Don't worry about it. Here is some beta blockers go on your way. The beta blockers have helped a little because my resting heart rate is below 100. I still have sporadic episodes where it jumps to over 200 and I'm not even on a treadmill or it goes from 95 to 140 after climbing one fight of stairs. Probably the most bothersome thing I have been having to deal with. Well knowing that heart failure is the second leading cause of death in lymies only behind suicide I wanted another opinion. I already had seen a different cardiologist who is the head at one of the local hospitals and he said I don't have lyme and this is all anxiety and depression. Obviously I didn't go see him anymore. The infectious disease doctor I say even said she believed I had Lyme Carditis which is the prime reason I needed to do the IV's. So I got this referral and was pleased with my appointment yesterday. This doc did admit that he only knew of Lyme causing heart blockage but he would look into it. Bottom line is, things are still not working as they should. My resting heart rate of 50 mg of Toprol is usually 88 but I don't think I have ever seen it go below 80. During one of my monitor tests the lowest it ever went when I believe I was sleeping was 68. The game plan this doc suggested was add a second heart medication. If that doesn't help I will add a third. Just I want more meds. I think this second one is still a beta blocker. The third one would be a calcium channel blocker. He also gave me a prescription for a med called Rhytmix or something along those lines that I can take during an episode. He told me to try and stay out of the ER ( I couldn't agree more) and just pop two of these pills during an episode where I can't control my heart rate. I back in about 2 weeks for an echocardiogram and the following week for another stress test. At least he is pursing trying to fix it. I do believe there is some possibility of a pace maker in my future. We will see how this goes.

I guess that is about it. I will be totally shocked if anyone has made to the end of this post but thanks if you have. Don't forget to help me cover the cost of my treatment by donating to fundraising site or buying some of photos. Thanks for the support. Prayers are always appreicated and comments are always welcome.

Thursday, June 16, 2011

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.

Wednesday, June 8, 2011

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.

Monday, May 30, 2011

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!

Monday, May 16, 2011

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.