Surviving the Day (Finding My Brave)

39. 39? 39!?! Could this really be the last year of my 30's? And 8th grade? Next year at this time one daughter will be going into high school and the other will be in middle school. The elementary school days will be gone. Brain fog, crying for no reason, falling asleep in the middle of the day and waking up feeling hungover, increased seizure type episodes. Is the chaos of my daughters All Star season catching up with me? Am I having a neurological flare up?

Were any of these things or a combination of all three the cause of my ever racing mind and the deep introspection of the last few weeks? I guess it doesn't really matter in the end. I just know I've been in a little bit of a weird place. Sad, frustrated, angry, exhausted, lost. Why was I still in this pit? Why were things not changing? How could I continue the rest of my life just trying to survive the day? I already felt like that's what I had been doing for the last year 8 to 10 years. Sometime after getting married and having kids but before my diagnosis I had entered survival mode. Day to day life was becoming a struggle. Maybe working full time with two small children was just making me an overwhelmed  mom. Maybe the heart palpitations, numbness and exhaustion were really just anxiety. Whatever the case I just needed to get through the day. Push through and survive another day. Then came the incredible moment when I finally got an answer...Lyme Disease. Perfect. We had a name. We could treat it and I could back to chasing the life of my dreams. That was over 6 years ago and here I am still in this pit. 

When I was younger and I dreamed of what my life would look like this certainly wasn't it. Out of all the things on my list I have managed two of them. I am a wife and a mother. While I am incredibly blessed to be serving in those capacities, I am far from the wife and mother I thought I would be and definitely not the wife or mother God would have me be. How did I get here? I am almost 40 years old, living in my parents house (and soon to be with my parents), missing my career and contributing  to the family, lacking friendships, financially a mess and a faith that wasn't thriving. My ongoing to struggle to see myself as God did was only made worse by this growing list of failures, and trials I was facing. I compounded that by living in the on line world of perfect lives as seen on facebook and chose things that could temporarily numb my pain. Starbucks and mindless television were go to fixs for me. The pit seemed to be growing deeper and I was overwhelmed at the thought of what I could possible do to change things. I mean my life is half over. The best years are behind my right? It's too late to start over. Writing a to do list was easy. Eat healthier, take my meds, have a better attitude, read my Bible everyday, exercise, pray more, keep my house cleaner, stop spending money...it was endless. 

I kept coming back to one thing. During this entire time I had constantly battled trying to control everything and everyone. Time and time again God would allow me to be put in a circumstance that would yank the control freak right out of me. I would go down fighting every time and eventually surrender but only for a moment. I knew the place I needed to start was God's word. I knew at some point I needed to learn to see myself and my circumstances through God's eyes. I needed to be grounded in His truth and the promises of His word. But every time I opened the Bible I never knew where to start. Old testament, new testament, Psalms? I didn't want to but just another "Christian" book either. While not bad to read them, I needed help digging in to God's word. Maybe a devotional was the right way to go. On the way home from my daughters gymnastics glass the other night I decided to swing in to the Christian book store. I didn't realize dinner was waiting for us at home so my leisurely browsing was now rushed but I was determined to grab something or a few somethings. They were having a great sale so I walked out with 4 books. 1 for each of the girls and two for myself. Little did I know what was about to unfold over the next few days. 

I decided to jump in to my book that night and start my devotional the next morning. I had never heard of the author but the title and back cover spoke to me. "Find Your Brave- Courage to Stand Strong When the Waves Crash In" by Holly Wagner. The words on the first few pages pulled at my heart and brought tears to my eyes. They spoke so directly to how I was feeling and what I was going through. I was excited knowing I had at least on resource to help me get started. The next morning I cracked open the pages of my new devotional journal. "Looking Up-Trusting God With Your Every Need" by Beth Moore with Lisa Guest. While I was excited to see what this devotional was all about the journal part scared me. While writing has been beneficial to help clear my mind in the past and I liked the idea of keeping a journal to record what was going on in my life I was too critical of my self. I would go back and read what I had written and would just think about how dumb I sounded and in the trash it would go. ( I know one of my faults. I'm working on it). Once again the words I read, the Bible verses I looked spoke directly to my heart and were just what I needed to hear. God certainly had His hand in my hurried shopping trip and brought me to the right resources. It has been a great week of seeking God's word, beginning to learn and apply some critical truths in my life. Both books work so well together and the things I am learning have been reaffirmed though a few Facebook pages of all places. Proverbs 31 Ministries and Sown With Strength both are a great source of inspiration of for me. Plus I started off the last week with a great sermon from Pastor Spivey at New Vintage Church. 

As I sit here writing this tonight I am beginning to see my self  in a new light. I have renewed hope in God's promises and am learning new truths. Being content doesn't mean I have to accept the pit I'm in as my lot in life. God wants to rescue me from the pit. I've got some baggage to let go of and some work ahead but the future right now is looking brighter than it has in a long time. Learning to love my self and finding my brave after 39 years- challenging. Believing God gives us dreams for a reason- exciting. Just because I took the long way around doesn't mean those desires that were planted in my heart all those years ago are dead. Expecting big things from an even bigger God- awesome! (Oh and I'll be putting in some extra effort to my relationships so don't be caught of guard if I'm calling you for coffee or lunch sometime soon)

As a side note: Since this post was different than anything else I have written I figured I'd give a quick update on the health end. I continue to struggle on a daily basis. Fatigue being my  biggest symptom. I am learning more and seeing just how much Lyme has affected both of my girls already and we are working through what exactly we need to do for all of us. I don't mind talking about it so if you have questions fire away. I'll tell you anything you want to know about Lyme and company. The blessing and the curse of this disease is looking ok. Believe me make-up and a smile go a long way to disguise the reality of what I go through. I still the leave the house, un-showered and in scrubby clothes more than I'd like but I am trying to make more of an effort to get up, dress up, and show up everyday. 

17 Days and Counting

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

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

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

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

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

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

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.