The the last few weeks have been a little crazy but I guess with me that is nothing new. There has been a lot going on with the kids and certainly a lot going on with me. I have taken a few rides on the "emotional" roller coaster. For some strange reason I still don't like that ride much. I have gone from happy to sad, frustrated to at peace, hopeful to hopeless. You get the picture. I should have expected some turmoil for the simple fact that we went to church. You don't need all of the details but like a lot of people it is easy to get in the habit of skipping church. I don't feel good, my husbands working weekends so it's hard for me to take the girls by myself, my daughter has a softball game and a million other reasons. My husband and I both knew we wanted to get back to church. So just last weekend we went. Not only once but twice. Our daughter sang for school at Saturday night church and we went to our church on Sunday morning. God welcomed us back with open arms and two great sermons. God really spoke to me and I was just kind of filled with peace. That should have been my warning, it was like the calm before the storm. The devil had to come in and start messing things up. So this past week has been especially tough. As I sit here tonight though, I am doing okay. Still working on trusting God completely and not stressing out or worrying about anything that we are facing. I just need to take it a moment at a time and know God has a plan.
So let me tell you about what has gone on treatment wise and where that is going. That of course will lead into the money part of things. Yesterday I completed day number 30 of my IV Rifampin. Too my surprise that is all I am going to take of it. Even more surprising is that I have mixed emotions about only doing one month. We never did find a cheaper source for that medication so I am excited about not having to spend another $1400+ however that doesn't mean my treatment got any cheaper. I don't know 100% why the doctor had me stop after only one month when we were really planning on 2 if not 4 months of it initially. I did feel like there was some minor improvement although it was hard to describe exactly what was better. I definitely had some returning symptoms and some new ones. The headaches that had started continued and I have had a nasty tension headache almost everyday for the past month. I also developed bad heartburn. I think the doctor was hoping for some more improvements. He seemed to key in on brain issues. "How is your brain fog and concentration? Any better?" Well I left my IV antibiotics at home twice when I went to the doctor, and not only did I go the wrong way to the doctors, I also went the wrong way to take the kids to school. That last one is a big one since the kids school is like two blocks away and on the same street we live on. I would say um no improvement in the brain area. Due to that and the doctors excitement over some new treatment he said stop the IV and lets have you try this light therapy. This sounded good to me. The only down side is the cost. At a $150 bucks a treatment, twice a week for a total of 12 treatments that puts us around $1800. Of course this wouldn't be an option if it weren't for my great friends and family and the fundraisers that have been going to help us.
As I said, yesterday I finished day number 30 of that IV med and today I started light therapy. Let me just tell you that if anyone had walked in during my treatment, I don't have any doubt in my mind that they would have called the authorities and tried to convince them that I needed to go to the hospital and be put on a 72 hour hold for a pysch evaluation. Just imagine, you walk into a room, and see me laying back with about 12 glass vials (very much like the little perfume sample bottles) taped to my stomach and I am holding what looks like a grocery store scanner or radar gun to my forehead. I am not lying to you. I almost wish I had a picture. So either I am nuts or I am trying to contact the mother ship, which I guess would also make me nuts. Beam me up doc! Maybe the aliens can fix me. All I can say is I had a good laugh at myself during all this. I'm thinking how a few years ago I would have run from a doctor or person trying to get me to do something like this. But God took the time to prepare me for the journey I was about to embark on and now I not only put radar guns on my forehead but I am even considering acupuncture. Anyone that knows me well can tell you that me and acupuncture would be a true miracle but I will save that discussion for another day. In any case, this treatment takes me a little over an hour because there are 10 points on the body you use this light and you do it in two rounds for different amounts of time. I have heard some good things about it so lets just pray that it works. I will do the treatment myself and do about 6 of them at which point I will take a month off before I would consider doing the other 6. I have started to feel a little worse in the last few days but today I really felt miserable. Tired, headache, lots of pain...it is always hard to tell for sure what is going so whether the treatment stirred things up I don't know for sure. That is my thought though. I guess I will know more on Monday when I go for round two.
This leads into my other treatment plans. After much deliberations, prayer, discussion, etc., I am planning on going to the Hansa Center in Kansas and have made my reservations. I had so much to consider when making this decision but here is what it came down to. First off this place has just been on my heart since I read about it. The more I learn the more I like it. Now they had an anniversary deal for a flat fee that was a couple thousand dollars cheaper than it is normally to go for two weeks. Of course that got my attention. After my fundraiser and some other help it looked like I may be able to consider going. I talked with the center again and wanted to confirm that they had no payment plans. That is when they told me that they do work through Care Credit and have a deal with 6 months no interest financing. I was beyond excited. So I went home and applied immediately and received instant approval for about half of what I needed to go. In my mind it was a sign that I had to go. Unfortunately my family didn't necessarily see it that way and we had some intense and emotional discussions on the issue. When all was said and done though I booked my appointment for January 2 through 13. If all goes as planned, I will be spending the first two weeks of 2012 in Wichita, Kansas hopefully getting my health back. The only thing that would make it better would be to have my family with me. Being away from my husband and kids for two weeks is going to be really tough. But I hope to come back so much closer to being the mom and the wife that I desire to be. What a way to start the new year. I am excited beyond belief. There is always a chance that I won't end up going but I am going to do everything I can to make sure I get to keep this opportunity. The last step is booking my flight. My hotel is reserved already. I have been checking flights and they are reasonable right now. I just need to confirm what refund or cancellation policies are. It looks like I would be flying Frontier which I have heard good reviews on. The cheapest flight so far, with tax and fees and all is about $300 round trip. I just need to know that my money is not totally lost if I have to cancel my trip. That deal was through Priceline so I have a little more research to do. I don't want to wait to the last minute either. I am flying out on New Years Day so I am hoping that keeps the price a little lower.
That brings me to the money. Oh how I wish money was never an issue. I am working on not making it one but right now it is still a dark cloud looming overhead. I think the issue is more with family than with me. I have really begun to feel a peace that God is taking care of it. However, the devil seems to be going after my family and they are just not at the same place I am. Because we are in this together their concern, worry, and opinion play a big part in how I proceed. This is where some of the concern with Kansas came in. If I go, and it doesn't work, then will I have just spent all of our money and have no money left for treatment? I see their point but I am trusting God on this and I feel like this is what I need to be doing. Of course add in things like Christmas, vehicle registrations, vehicle maintenance, etc...and it is easy to go into a tailspin of worrying and thinking the worst. I have continued to see God bless us though and have also felt like we are blessed so much more that we realize sometimes. It is easy to say that we don't have money to spare for others but the reality is we do. If I have money for a Starbucks even once, or a new jacket for my kids, or for cable or a cell phone I have money for others. The message we got from church had so much to do with this topic. If we look at where we are spending our time and our money, we will get a good picture of what is important to us. It seems the more we focus on others and help those in need the more we are taken care of. I am so on board. I am just praying God reveals this as clearly to my family. I am not ready to panic yet. God has our back. I am excited to see how He works things out.
I could go on but at this point I will be lucky if anyone read this all the way to the end. Thank you again for keeping on my crazy and wild journey through life with Lyme. I will try to update a little more often so my posts aren't so long. At least it may be good enough to put you to sleep right?
Saturday, November 12, 2011
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 www.AlwaysPositive.org. 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!
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 www.AlwaysPositive.org. 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 jessicamadson77@gmail.com 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.
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 jessicamadson77@gmail.com 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 complicated...um 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 work...you know who you are! I love you all.
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 complicated...um 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 work...you 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 kicker...in the US this medicine runs $50 a dose or higher. The few pharmacies I checked said my insurance won't cover it and for the 60 day supply I was looking at between $3000 to $4000. That would be the reason my doctor told me I need to go to Mexico to get it. Now 10 years ago that may not have been so bad. We went to TJ on occasion which wasn't a major deal. Now its a much bigger deal. I have to get a passport which could cost me $200. I need to expedite the passport process so I can get my meds asap. The doctor is supposed to call me with the pharmacy he wants me to use. The medicine should cost me closer to $600 down there. That is still not cheap but much more doable than getting it here in the US. I am not sure though how I feel about crossing the boarder with $600 cash and having to go through customs with a bunch of bottles of white powder. This is going to take some work and a lot of prayer to say the least. So I guess that is where things are at.
I am still in a prayer over going to the Hansa Center in Kansas. I did talk with them and it would cost me about $6000 to $7500 for two weeks maybe more. That is in addition to airfare and hotel. So if I could magically pull together about $10,000 then I would be gone it a heartbeat and leave my abx in Mexico. So things are really up in the air but I serve a big God. My prayer recently has been for me to submit to God's will and plan for my life without interfering. That has always been an on-gong request of mine as you know. How much do get involved with the issues at work or other things and try to change the direction they are going. I am finally learning to stop. I asked God if could make some of these things clear to me without them making sense. Like confirm that I am on the right path even when it doesn't sense. He did that very thing yesterday shortly after I prayed that prayer. Here was the answer he gave me through a friend..."Do not make decisions based on money". The next few weeks will be really interesting and probably life changing. Thanks for your support.
I have had some substantial changes at work that I can't really say more about right now and my treatment has just been turned upside down. I had my doctors appointment yesterday and was expecting to start back on my abx including the IV Rocephin 2x a day, 3 days a week for the next two months. After meeting with the doctor and discussing symptoms, progress, etc...he informed me of the new plan. Now it is hard to think on my feet sometimes so I didn't really ask for the whys. I just said okay. I trust my doc. Since the appointment I have had a little more time to process things. This is a big change. I am going back on my two oral abx. They are both twice a day but one is two weeks on, two weeks off. Then we are switching my IV abx. I am now going to be using something called rifampin. I have heard a lot of others lymies use it. I am finding out though that a lot of them used it orally. They were usually put on it for a co-infection called Bartonella. I haven't been diagnosed with Bart but could still have it. My doc is putting me on it for the lyme though and said it has the added benefit of taking care of a number of co-infections as well. That all sounds great so far although it has really kicked some peoples butts. Then I find out it is 1 IV a day, infused over 1 hour, every day for 60 days. So I now have 60 days straight of IV's. I have to go in twice a week to the doctors office to get my needle changed out. Not looking so wonderful anymore but okay it is what the doctor wants. Now here comes the kicker...in the US this medicine runs $50 a dose or higher. The few pharmacies I checked said my insurance won't cover it and for the 60 day supply I was looking at between $3000 to $4000. That would be the reason my doctor told me I need to go to Mexico to get it. Now 10 years ago that may not have been so bad. We went to TJ on occasion which wasn't a major deal. Now its a much bigger deal. I have to get a passport which could cost me $200. I need to expedite the passport process so I can get my meds asap. The doctor is supposed to call me with the pharmacy he wants me to use. The medicine should cost me closer to $600 down there. That is still not cheap but much more doable than getting it here in the US. I am not sure though how I feel about crossing the boarder with $600 cash and having to go through customs with a bunch of bottles of white powder. This is going to take some work and a lot of prayer to say the least. So I guess that is where things are at.
I am still in a prayer over going to the Hansa Center in Kansas. I did talk with them and it would cost me about $6000 to $7500 for two weeks maybe more. That is in addition to airfare and hotel. So if I could magically pull together about $10,000 then I would be gone it a heartbeat and leave my abx in Mexico. So things are really up in the air but I serve a big God. My prayer recently has been for me to submit to God's will and plan for my life without interfering. That has always been an on-gong request of mine as you know. How much do get involved with the issues at work or other things and try to change the direction they are going. I am finally learning to stop. I asked God if could make some of these things clear to me without them making sense. Like confirm that I am on the right path even when it doesn't sense. He did that very thing yesterday shortly after I prayed that prayer. Here was the answer he gave me through a friend..."Do not make decisions based on money". The next few weeks will be really interesting and probably life changing. Thanks for your support.
Tuesday, August 23, 2011
Unsure
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.
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 work...my life doesn't have time for life. My treatment and taking care of myself start to suffer a little when I am at work and things are busy. I get easily overwhelmed with how much there is to do. I don't have a clue how I survived as long as I did being sick while working full time and doing everything else. I am not ready yet to throw in the towel though. I don't think I will ever be ready to quit work because I know my family needs the money. However, this is part of me giving up control. This work issue is out of my hands as I see it. I am caught between the doctor, this disease, and the City. The end of 30 days is approaching. I see the doctor Thursday and I guess will be getting another note from him. Just as I suspected, nothing has changed in the last 30 days. I definitely have not improved but on the flip side I have not regressed like I thought I might. I have had some change in symptoms but I have managed okay. I will say I have had to take some time off for having a bad herx or two but otherwise have maintained okay.
I did have a really bad but short lived "twitching"episode last night. Come to find out, a number of people consider those episodes seizures. I never did because I never lost consciousness during them. I know exactly whats going on even if I can't respond. Either way, I hate it when it happens but we get through them each and every time. My pain has been up a little. More muscle pain and weakness, less joint pain. I am starting to realize that my muscles are finally starting to get extremely weak. I really need to get back to the gym and do some weight training. It really hit me when I could barely get a gallon of milk out of the fridge. A little scary but I know I just need to work my muscles. The heart has kind of been the same. Trying to focus on some of the meditation exercises, although I haven't done them everyday. I still get my butt kicked with minimal exertion. I am having more palpitations and dizzy or "drunk" feeling episodes. It is so weird to feel like your heart is racing and beating out of your chest and the rate is normal. I have a bunch of blood work to get in for the cardiologist at some point. I need to do it mid day though so they can adequately measure the level of my one heart med. Then we will know whether or not we can increase it, I guess. The crepiditis in my joints is out of control. They all sound horrible but at least some of the pain is down for now.
The sauna is awesome. It is fairly relaxing when I am in it but certainly kicks my butt later. (I think everything is kicking my butt...haha) I am trying to take Chlorella before and after. It is an algae and is supposed to absorb some of the toxins. Working again on my diet. Trying to just make so small lasting changes. I don't know how anyone can go on these crazy healthy diets, some of which are so restrictive. My problem is I want instant results. I know its not going to happen but in my world, if I went a day without junk than I want to feel a noticeable difference. Not this, I have gone 3 weeks without gluten, dairy, and sugar and I think I might feel a tiny bit better. Sorry, it's just how I am. I am trying though (again). Sugar is the big one for me I think. Gluten would be next. So, just working on one little thing at a time. It's lame because sugar is in everything! Sooner or later I will get there. Maybe my one doc is right, if I just work on adding things, that will be easier than taking things away. I have been working on adding my protein shake but I haven't been a 100%. Now maybe I will focus on adding a veggie juice in. Hopefully if I keep adding in the healthy things the bad things will have to go because there just won't be room for them. I like that idea.
God has continued to provide for us financially. Like I said last time, my husband and I feel like God is doing some work behind the scenes we just aren't at a point of sharing yet. I am still excited to see where He is leading us. I am glad I go to the doctor on Thursday so I can discuss our outstanding medical bill. I just opened another one and it had gone up by over $400 dollars so I guess we owe about $1750 to catch up. It almost looks like the insurance stopped paying sooner than I thought. Not cool but we will get through it. I think the doctors office will work with us on payments. I am just hoping to try and get this resolved before it all starts again in a month. Either way, I feel blessed that between my family, my parents, and due to some awesome friends we have made it this far. The only treatment things I have turned down at this point due to money have been hbot and going to the Klinek and Germany. I feel very blessed to have gotten my IV this long and every other med the doc has wanted.
Well my brain is starting to get a little lost so I guess I should end this update for now. Please continue to keep us in your thoughts and prayers. I have another small medical concern that I have to address with the doctor and I could use some extra prayers for that. I will probably post an update later this week depending on what the doctor says or if anything new comes up. I am going to try and add some more photos to my website so don't forget to check it out. If you are blessed financially and want to help us cover my medical expenses you can also do that through my donation page. There is a chance we maybe able to do a local fundraiser to help out, and if that works out I will certainly let you know. Thanks again for all your support. I hope and pray you are all doing well.
This is beginning to feel like the longest road trip ever. Although I am still fairly content to be riding shotgun I am finding hard to not point out to the driver that the gas tank is getting low. I am sure the driver(Jesus) is checking the gauges and knows the gas tank(me) is getting low on fuel. There are just some days that I get a little down and just think I can't continue doing this. I was in this frame of mind just a few days ago. Here I was thinking about how I was having a "good day", meaning not really feeling sick but after being out about half of the day I was so exhausted I felt like I could have slept for days. So even on my good days, the tiredness and fatigue sets in and becomes overwhelming. I just thought I can't imagine having to live the rest of my life feeling this tired. I may be able to deal with some of the pain better than I could the fatigue. For me fatigue just takes the joy out of anything I am doing. It takes so much effort to do something it makes everything a chore. So frustrating to say the least.
With summer break coming to an end and me being back at work part time, I have also been feeling like I just don't have time for anything. I don't have time to be sick, to be a mom, to be at work...my life doesn't have time for life. My treatment and taking care of myself start to suffer a little when I am at work and things are busy. I get easily overwhelmed with how much there is to do. I don't have a clue how I survived as long as I did being sick while working full time and doing everything else. I am not ready yet to throw in the towel though. I don't think I will ever be ready to quit work because I know my family needs the money. However, this is part of me giving up control. This work issue is out of my hands as I see it. I am caught between the doctor, this disease, and the City. The end of 30 days is approaching. I see the doctor Thursday and I guess will be getting another note from him. Just as I suspected, nothing has changed in the last 30 days. I definitely have not improved but on the flip side I have not regressed like I thought I might. I have had some change in symptoms but I have managed okay. I will say I have had to take some time off for having a bad herx or two but otherwise have maintained okay.
I did have a really bad but short lived "twitching"episode last night. Come to find out, a number of people consider those episodes seizures. I never did because I never lost consciousness during them. I know exactly whats going on even if I can't respond. Either way, I hate it when it happens but we get through them each and every time. My pain has been up a little. More muscle pain and weakness, less joint pain. I am starting to realize that my muscles are finally starting to get extremely weak. I really need to get back to the gym and do some weight training. It really hit me when I could barely get a gallon of milk out of the fridge. A little scary but I know I just need to work my muscles. The heart has kind of been the same. Trying to focus on some of the meditation exercises, although I haven't done them everyday. I still get my butt kicked with minimal exertion. I am having more palpitations and dizzy or "drunk" feeling episodes. It is so weird to feel like your heart is racing and beating out of your chest and the rate is normal. I have a bunch of blood work to get in for the cardiologist at some point. I need to do it mid day though so they can adequately measure the level of my one heart med. Then we will know whether or not we can increase it, I guess. The crepiditis in my joints is out of control. They all sound horrible but at least some of the pain is down for now.
The sauna is awesome. It is fairly relaxing when I am in it but certainly kicks my butt later. (I think everything is kicking my butt...haha) I am trying to take Chlorella before and after. It is an algae and is supposed to absorb some of the toxins. Working again on my diet. Trying to just make so small lasting changes. I don't know how anyone can go on these crazy healthy diets, some of which are so restrictive. My problem is I want instant results. I know its not going to happen but in my world, if I went a day without junk than I want to feel a noticeable difference. Not this, I have gone 3 weeks without gluten, dairy, and sugar and I think I might feel a tiny bit better. Sorry, it's just how I am. I am trying though (again). Sugar is the big one for me I think. Gluten would be next. So, just working on one little thing at a time. It's lame because sugar is in everything! Sooner or later I will get there. Maybe my one doc is right, if I just work on adding things, that will be easier than taking things away. I have been working on adding my protein shake but I haven't been a 100%. Now maybe I will focus on adding a veggie juice in. Hopefully if I keep adding in the healthy things the bad things will have to go because there just won't be room for them. I like that idea.
God has continued to provide for us financially. Like I said last time, my husband and I feel like God is doing some work behind the scenes we just aren't at a point of sharing yet. I am still excited to see where He is leading us. I am glad I go to the doctor on Thursday so I can discuss our outstanding medical bill. I just opened another one and it had gone up by over $400 dollars so I guess we owe about $1750 to catch up. It almost looks like the insurance stopped paying sooner than I thought. Not cool but we will get through it. I think the doctors office will work with us on payments. I am just hoping to try and get this resolved before it all starts again in a month. Either way, I feel blessed that between my family, my parents, and due to some awesome friends we have made it this far. The only treatment things I have turned down at this point due to money have been hbot and going to the Klinek and Germany. I feel very blessed to have gotten my IV this long and every other med the doc has wanted.
Well my brain is starting to get a little lost so I guess I should end this update for now. Please continue to keep us in your thoughts and prayers. I have another small medical concern that I have to address with the doctor and I could use some extra prayers for that. I will probably post an update later this week depending on what the doctor says or if anything new comes up. I am going to try and add some more photos to my website so don't forget to check it out. If you are blessed financially and want to help us cover my medical expenses you can also do that through my donation page. There is a chance we maybe able to do a local fundraiser to help out, and if that works out I will certainly let you know. Thanks again for all your support. I hope and pray you are all doing well.
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