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.