Saturday, August 13, 2016

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 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. 

Sunday, March 13, 2016

Beautiful Mess

As the 6 year mark since my Lyme diagnosis approaches I am amazed by the fact that this journey continues to teach me, stretch my faith, and push the limits of what I thought possible. While I tell people that I am really no better then when I started treatment which is true in a physical sense I am certainly different. I have grown in many ways and just when I think I'm done a new challenge comes my way the process continues. My journey toward better health started many years before my Lyme diagnosis. I sought things that may provide relief from my little complaints at the time but November 2008 is when I truly knew something was wrong. Unfortunately as I sit here all these years later, I fell like I am still scratching at the surface of what is going on with me. While Lyme Disease is definitely part of problem I am not sure I could give it a percentage of how much it plays into my struggles on a day to day basis. My beliefs on the whole thing continue to change the more and more I learn. Lyme Disease is a significant problem, hard to treat and can be fatal. However, as I continue to discover and now believe it is chronic dysfunction or dysregulation of the body systems that are truly the issue. A few years ago one of the top Lyme doctors renamed in MCIDS (multiple chronic infectious disease syndrome). That is a step in the right direction but I feel like if the body we functioning the way God originally designed it to function, then the infectious disease part wouldn't be such an issue. This is as far as it goes for me though. I don't have a doctorate of any type in any thing and I really have no desire to get one so I am sure this will just remain my opinion based on my own personal experience. 

I came into 2016 with lots of hope but I also felt like I had a game plan. I temporarily lost that hope when I went to one of doctors appts and left feeling once again like he had idea what to do with me. I vented my feelings to my fellow Lymies was flooded with encouragement and suggestions. Bee Venom Therapy (BVT) was one of them but I am just not ready to even entertain that idea. What was I going to do? We got money back from taxes and while we were focused on paying off as much debt as we could we saved a little fun money. While the hubby and kids were plotting their fun purchases I decided to put mine towards seeing yet another doctor. I had high hopes as two of my fellow mommy friends with Lyme were seeing him with some good results. I just didn't know (and still don't) how much I can get before the money once again runs out. In any case I figured it was worth a shot.

Enter Dr. T. I must admit I have been frustrated with the fact that I didn't know about him before I flew off to the Land of Oz in Kansas 4 years ago. Much of what I had read about him sounded just like where I had been in Kansas and he is local. Saving a few grand on airfare, hotels, etc...would have been a nice addition to put towards treatment. I realize though that I was probably not ready for what Dr. T was going to tell me had I seen him before now and I certainly would have missed out on meeting some incredible people. Back to Dr. T, my friends were so excited I was going to see him. One of them even said to me that they thought I was really ready to see him since I had been committed in taking on the Whole30. If I only knew what that was going to mean. 

Last week I finally had my highly anticipated 2 appts with him. I had filled out my new patient paperwork, including a checklist of over 200 symptoms, and sent in my current med/supplement list and a health history narrative. Then I found out he doesn't even look at that until after your first appt. He doesn't want any ideas in his head of what may be going on with you. I totally get that and actually really appreciate it. It reminded me of how I didn't like the firefighters to come up and talk to me when I got on scene of a fire until I had a chance to look around and use what I had learned about burn patterns and indicators to give me an idea of where the fire had started. It was harder to be objective looking at a fire when someone told me a bunch of information before I had looked at anything. Smart doc, I like it. 

I guess I should back up and tell you that Dr. T is a functional medicine chiropractor. Bring on the muscle testing, zyto and other unconventional forms of testing I had come to appreciate over the years. Now because the doc knew I was friends with 2 other patients who had Lyme he added that  and all the co infections into my testing. As a side note at least 2 forms of Lyme bacteria, bartonella, babesia, erlichia, a systemic bacterial infection, viruses, and at least 1 parasite all popped up. While they are something to pay attention to they are not the big concern right now. Like the Hansa Center in Kansas, the main goal is to restore the body's function as much as possible and then hopefully it will take care of most of those things it self. 

Now I have met with Dr. T for a about 4 hours and put another few hours into reading and researching and I still don't fully understand everything. You really need to a be a geneticist or super science geek to get some of these results so just know I am trying to paraphrase what we discovered and put in understandable terms as much as possible. (Translation=I'll probably get it wrong) Here goes nothing. Detox pathways is something a lot of Lyme people focus on. I've considered doing this testing (23 and me) but I just didn't feel like it was one of my issues. Everyone I knew that had detox issues or a genetic defect in these pathways couldn't tolerate antibiotics (like one dose would almost kill them) and would get no relief or even get worse from things like the sauna and Epsom salt baths. I did five or six antibiotics at one time and used the sauna or took baths all the time. Didn't seem to bother me to much. I was excited though that we would be looking at some of these issues during the testing and thought well at least I can check it off my list. Ya well my pathways had something else to say and they are actually quite a mess. There are actually pathways that deal with all sorts of things and I seem to have issues in all of them. Detox, toxin metabolism, inflammation, neurochemical, energy production, steroids hormones and immune pathways. This is all leading to serious histamine and inflammation problem causing almost my entire system to lose it's freaking mind. When it comes to organ issues my pancreas is showing as the biggest issue. Many things seem to test back to inflammation and pancreas. Dr. T asked is I have a family history of diabetes (which I do) and told me I am headed that direction if we don't get this figured out. Other organs showing issues are: heart, brain, 4 sinuses, both ears, lungs, ascending and descending colon, ovaries, joints, spleen, gallbladder, liver, kidneys and adrenals. I also have a problem with certain barriers in the body having "holes" which allow things to pass through them which should not happen. The most common one is leaky gut. Food particles and such from your gut can pass the barrier and end up in your blood stream when they shouldn't be. I have similar issue with both the lungs and brain. Speaking of the brain I have an issue with oxygen brain which can cause short term memory loss, word aphasia, and word slurring all which I have experienced but mostly the memory loss. My parasympathetic nervous system which deals with things like rest and digestion is decreased while my sympathetic nervous system which deals with our fight or flight response is increased. So basically don't have enough braking power for the amount of gas my body is being given. It is confused with trying to go and stop at the same time. I have issues with heavy metals and EMF's (cell phones, wi-fi, body actually craves emfs thinking it can use it for energy) and trace minerals.

To help start fixing these issues I have started on some new supplements and been given a new diet. I am also doing a therapy that has to do with polarity of the body and trying to put my body in resting state from all of the EMFs. I'll see the doctor again in a few weeks and may start with some adjustments and other therapies. Interestingly enough Dr. T sees our regular chiro, Dr.S (whom we love) and vice versa. There was some discussion about trying to get Dr. S to come to an appointment so they can see me together and help get some things figured out. 

As for the diet, I thought the Whole30 was tough. but I look forward to the day I can just do the that. I have confirmed after a 30 day round and a 41 day round of the Whole30 that sugar does affect my pain level. Unfortunately the cravings never went away and there is some speculation that the cravings may be related to my pancreas problems. I now have a combo of the Whole30, a low histamine diet, and a few other things my body doesn't like at the moment. In a nutshell I can't have:
alcohol, grains, dairy, added sugar in any form, legumes, chicken, pork, fish (unless it is extremely fresh), berries, bananas, melon, COFFEE, avocado, citrus, potatoes, tomatoes, peppers, eggplant, spinach, sweet potatoes, any nuts, baking soda/powder (whats the point of those without anything else) and any artificial anything (again no point with everything else I can't have). The doctor tried to be nice and tell me things I could have like bok choy, dandelion greens, chard, etc., which are all things I have never even bought let alone try to cook. So unless I win the lottery and can hire a chef to help me out I have a feeling this is going to be a rough go for a little bit. There is no time limit on this right now so it's this until...I lucked out and with one of my supplements I could have eggs and sulphur veggies (cabbage, broccoli) which were originally on the list of no's because I have a sulphur problem as well. I guess I will found out what I am really made of. 

Lots of praying going on though this process.  While I have typically prayed for help trusting and giving up control in the past I find myself praying more for wisdom now. I really like Dr. T and so much of what he said made sense to me. If my body is really having problems detoxing toxic substances or metabolising things so they can be used or eliminated then it makes sense to me that many of my medications and supplements in the past probably didn't do much since my body can't process them correctly. Having to trust that if this is where I am supposed to be then God will provide the finances, It continues to be a journey full of trials and tribulations, but also one full of faith and hope. While I left Dr. T's office feeling like a walking disaster there was beauty in the feeling of hope that I can still regain my health and the large part of my life that has been lost to being sick. I've got a little more than a year to get this figured out because I have big plans to start my 40's in much better place than I've spent my 30's!

Tuesday, January 12, 2016

New Hope

A very late Merry Christmas and Happy New Year to you all. I love this time of year, starting at Thanksgiving until the new year begins. I've always loved New Years resolutions although I can't say that I have ever kept any. I like the idea. A new year always feels like a fresh start so I enjoy thinking about some things I want to work on changing or goals and dreams I have for me and my family in the coming months. This year was no different, with the exception of my health being number one on my list. Many people want to eat a little healthier or work out regularly but for the last 6 years mine has been to beat Lyme and everything that has come with it.

I was thinking earlier about how many people ask how I am doing and are surprised to find out I am still fighting and that I really haven't made any improvement. "You look good" "I always see you doing things" "You wouldn't know there was anything wrong" I get it. I see how people can be confused but I think I figured it out. In my particular case, we believe I got Lyme Disease about 30 years ago when I was around 8 yrs old. I was bit by a tick right here in San Diego. Lyme was new on the scene and it was thought there was no way it could be here in California, plus I didn't develop a bulls eye rash so there was no need to worry. I also didn't become suddenly ill. I didn't wake up paralyzed or suffer from anything to raise any serious red flags. My mom will tell you I complained of stomach aches often and I struggled with remembering things or staying organized but not of it interfered in my daily life. More than likely my body was able to keep the Lyme in check. Over the years I had numerous viruses like most people and that probably began weakening my immune system. 

Looking back, high school is when things began to turn. I was sick to my stomach a lot and was finding I was extremely tired. No test the doctors did ever seemed to show anything and I just figured I was over stressed and not taking great care of my self. I learned to adjust to how I felt on a daily basis and that became my new normal. After having my first daughter some things started happening with my heart and my ability to focus. I was diagnosed with ADHD after returning to work sometime around 2003/2004. I had my second daughter in 2006. Issues with my heart continued and became a little more bothersome, my ability to focus and stay on track continued and I was going on 11 years of being tired. In 2008, just a couple weeks after participating in the Breast Cancer 3-Day 60 mile walk things really began to go down hill. I look back now and realize the stress of 2 pregnancies and participating in this event just pushed my body over the edge. 

When I was diagnosed in 2010 my health was at an all time low. I would say the stress and side effects of treatment pushed things a little further and that is where I have remained. For those of you that were around when I was diagnosed, it looks like things have improved but the reality is I have adjusted to a new normal.  I have felt like this for so long the not feeling good is a daily thing. I've learned how to function somewhat with the current level of bad. I've got out of posting about it all the time because I know I people get tired of hearing it and frankly I know I shouldn't dwell in that dark place. There are still many days where getting the kids to and from school is all I can manage. I push my limits to be there for my kids because it helps me feel somewhat normal and it means the world to them. I'm continuing to wait for my miracle and try to figure out what to try next. I have been blessed in countless ways during these last 6 years so please know I have a lot I am thankful for. I am just not ready to settle and believe this will be as good as it gets. 

A few months ago you may remember me writing about my journey with the Whole30. While I am still proud of 30 days with no dairy, added sugar of any kind, grains, alcholhol, and legumes I didn't give it long enough for my situation. The reintroduction of certain foods opened the flood gates and old habits and cravings were right back. I can tell you that in those 30 days, my skin looked better and I lost weight. I may have even had a slight reduction in my pain. What I have dealt with the last month or 2 since stopping has been nothing short of intense. I would even be willing to say I had some of my worst moments since being diagnosed. The joint pain I had in my fingers and toes got worse and now was in my elbows and knees. I had widespread muscle aches, I was having multiple seizure like episodes a week and was sleeping my days away. I had a big reality check when I went outside to shoot baskets with the kids on the hoop they got for Christmas. I didn't have the strength to get the ball to the hoop and after about 2 minutes I was done. It made it very clear that if things didn't turn around soon and if I didn't find a way to start building up my body that I will be in a wheel chair shortly. Somethings got to give. 

I still don't fully understand how I could go to feeling that much worse when I didn't really feel noticeably better. When I started to fight the sugar demon right away I knew 30 days wasn't long enough and the creators of the Whole30 say up front for Lyme or other illnesses plan on doing it longer. I'm not happy about it, but I am currently on day 8 of a Whole90. Yest that is 90 days! Thankfully no one has been injured this first week but I apologize now for my attitude if you have to deal with me these next few weeks. I have stopped doing my IV ozone as I wasn't feeling any better doing it and most days I was to exhausted to get my self to the doctors any ways. Plus it's not cheap. I will see my doctor in February and am hoping to start the Low Dose Antigen therapy I talked about sometime soon. With a few medications and all my supplements, I am back to taking about 30 pills a day. I am hoping between the diet, the supplements, the support of essential oils and the addition of LDA that I can finally get my life back. 

I'm choosing to use the New Year to inspire New Hope for putting this disease in remission and reclaiming my life. Praying that 2016 is a year filled with health and happiness for all of you.