Tuesday, January 21, 2014

Anxiety that abounds

My neurological problems that come along with Lyme and the co-infections I have (Bartonella and Babesiosis) cause an overwhelming amount of anxiety. I can't control my emotions or the directions my thoughts go in, not to mention that my brain feels like it is going 90 miles an hour at all times. This makes things very difficult when trying to prepare for any type of change. Especially when that change is getting another PICC line put in and starting IV treatments again. My doctor sent in the order for my PICC line last week and the date for the procedure is tomorrow (well technically today as it is past midnight as I write this) at 1:30.

However, the orders for the home infusion company have not been sent in yet. This is important because the day after the PICC line is put in a nurse has to come here and do a proper dressing change for the line. Not to mention that I have to have supplies delivered like the kit for the dressing change, the IV bags, the lines to connect my bag to the PICC line, saline flushes to keep the line open, gloves, alcohol wipes, etc. I have to have everything that a hospital or doctors office would have to do this at home. So, I have to call my doc's office as soon as they open to make sure all of this gets set up. Otherwise, I end up having to reschedule the procedure for a later date and I am ready to get started now!

The night before I scheduled the appointment, I didn't get to sleep until after 5:00 a.m. despite the many medications I take to help me sleep. That's what anxiety does...it keeps you guessing, keeps your mind rolling, and ends up leaving you zapped. Of course, the overall body pain I experience keeps me awake as well, but I know if I could control my emotions more that sleep would come easier. So, I'm not in the best mindset right now.

I feel so frustrated about having to go through all of this again. I feel like the past 9 years have been stolen from me, because I had to quit work at 30 and I'll be 39 this spring. This was when I had been planning on having kids and being a stay at home mom. My college degree is in Human Development and Family Studies with a focus on both early childhood development and marriage and family therapy. Basically, I majored in how to be the best wife and mother I could possibly be. It's what I always wanted to be and a dream that has so far been unfulfilled. That is hard and heartbreaking.

Today I was trying to clear out my bedroom to make room for the mini-fridge that has to be put back in to keep the bags of antibiotics chilled. So, I took a lot of stuff down to my storage closet downstairs. I had to reorganize some things and I ran across all these children's books I have kept/collected over the years. I started buying children's books that I loved back in high school. I added to the collection when I taught preschool and saw which books the kids really responded to. I kept college textbooks about all things kid related...titles like "Painting and Arts for Children", "How Play is Important in Childhood Development", "Discipline Techniques for Young Children"...the list goes on. I don't know what God's plan is for me in that area. I know He could bless me with a child, or push me in the direction of adoption. Yet, being human, I can only see the realities of the difficulty of having a child at an older age, having only one ovary due to losing one from these diseases, and the scariest being passing these diseases to my child during pregnancy. Lyme can also cause women to miscarry and I think of how hard that would be on me emotionally. However, when I look on what I've been through, I end up thanking God for not giving us children before all of this happened. Why? Because if I can't even take care of myself how on earth would I handle a child? With my sound sensitivity how could I deal with the noise that comes from a child playing, crying, or throwing a tantrum? The answer is I couldn't and I would beat myself up endlessly if I couldn't be the mother I always wanted to be. So, I try very hard to see my childless lifestyle as a blessing for right now. But, as I said, my brain is not working normally so it makes it very difficult to control my emotions about these things and I often cry over what I see as unfair. Anxiety makes me focus on what I feel I've lost instead of what I have.

Right now I feel the need to count my blessings. The biggest being how I have grown in my faith, even when I question things I remember God is in control. Another HUGE blessing is my wonderful husband who is my best friend, my biggest advocate, my confidant, my caregiver. The immense love he shows me daily by bringing my food to bed without even thinking of it as a chore is just one example. He listens to my ramblings, my questioning, my worries and he gives me such wonderful advice on how to cope with it all. Honestly, his love truly humbles me as he never complains about anything and assures me that we were meant to take this journey together. His view is that God knew this would happen to me changing his own life as well and that he sees the positives in how it has worked in our life together and even worked to make our marriage stronger. I named this blog, "Our Life In My Words" for the specific reason that it is OUR story, I'm just the one writing it. I am blessed with an amazing family who make sacrifices for me all the time. My mom is definitely my second biggest caregiver as she comes here at least three times a week to help with laundry, grocery shopping, and cooking meals. She selflessly gives and shows her love in countless ways. My dad would truly do anything to make me well! He wants to know every detail of how I feel, what the doc says, what we are trying next to hit this, and he gives up time with my mom so she can be here for us. I have support, love, and continual prayers from my in-laws who often deliver meals and try to find any way they can to help us. My sister, brother-law, nieces and nephews love me and pray for me even though I rarely get to see them. My husband's brother, my sister-in-law, and their two wonderful girls live in another state but they pray for us constantly. I count these as huge blessings because I know many devastating stories of Lyme patients whose families don't believe in their illness, some whose spouses often leave because the pressure is too much for them. Sometimes worse are the patients who can't even get treatment because of the lack of Lyme doctors and the fact that most aren't able to accept insurance because insurance companies don't believe in treatment for chronic Lyme. They seemingly ignore the abundance of studies showing long term treatment is key in getting people their health back. Many patients have lost all they have to pay for treatment and others have to quit before they're well because they have no money left to continue.

After typing all of that out I now see that I am truly showered in all the blessings that count. Those blessings outnumber the things I just wrote about being stolen by this disease. I may not have children right now, but I have no idea what the future holds for us and I cannot dwell on what I don't have if I focus on all the amazing things I do have. Honestly, this is why I write this blog. I do hope it reaches others, helps them deal with their own difficulties, but God reaches me through my writing to change my heart and my mood. Many people praise me for going through all of this with such strength, but that makes me very uncomfortable because I am weak and human and prone to selfishness. What may come across as my strength is really only the strength that God gives me. I write what is going on, I often whine, and yet He comes along and turns me around to show me His glory in my story. How can I not be in awe of that? If you truly knew the mood I was in when I started typing and the peace I now have in my heart, well, you would see God at work. There are so many people going through things much harder than this. How can I complain when I ask for peace and strength and God graciously gives it to my whiny, frustrated, anxiety filled heart. I do nothing to earn that. He gives it freely and I cannot adequately express my extreme gratitude for it.

I'm sorry that these entries are sometimes so very long. I wish I was the type of writer/blogger who could be more concise and to the point, but I'm not. As I said, this is written for me as God seems to teach me many things through my rambling writing style. I can't change the length of these entries, because sometimes it takes that long for God to grab my heart and change it from doom and gloom to hopeful and thankful. I appreciate all of you who take time out of your day to read this. I hope something I share helps you in your life, that God uses me reach others and show them how powerfully He works in my life. I pray today goes smoothly and everything falls into place, but if it doesn't I refuse to get upset over circumstances beyond my control. I choose instead to believe God's plan for me and my life is better than the one I had mapped out in my own head. I choose to trust Him because that is where my strength, peace, and much needed patience comes from. I shudder at the thought of going through this without His guidance. I pray He touches your life and you feel His guidance as well. Sometimes the best thing for anxiety that abounds is to realize you aren't in control of everything. You can only do your best, but without Him I know my best falls so short.



Thursday, January 9, 2014

What to do when your life slides backwards...

Okay, the title here is a big question that I have been pondering for months now. After I do as shortened a version of "catch up" on all of this as possible, I will come back to that question. For now, I need to catch people up. After 27 months of daily IV antibiotics, which I completed at the end of September 2011, I felt a lot better. I was doing normal things like laundry, grocery shopping, cooking, and I was even beginning to start meeting up with friends again. Things went well for about a year. Then exhaustion started setting in around September of 2012. Not the typical "tired and wish I didn't have to get out of bed" exhaustion, but the literal cannot get out of bed without feeling physically drained type. We went to my doc and discussed that since I had 3 prior sleep studies which indicated narcolepsy, perhaps that was just something that wasn't going away and we treated it with the stimulant drug, Adderall.

After 5 months, basically early spring of 2013, I started noticing neurological issues returning. I was having more difficulty balancing and bumped into things a lot, my memory was getting worse, and I was searching for words whether I was talking or just writing a simple Facebook status. I was scared that it was the Lyme and co-infections (Bartonella and Babesiosis) coming back, so I prayed for it to be anything else. We ran tests on my brain neurotransmitters, meaning we tested my levels of seratonin, GABA, dopamine, norepinephrine, along with others. My tests showed some abnormal levels so we implemented a supplement regimen to help try to get the levels back in the normal ranges praying this would solve the problem. But, it had little effect and I knew my brain function was getting worse. I would get out of bed and by the time I stood up, I would forget what I got up for. I would look to see if I needed water, no, check to see if I had been thinking of getting something from the kitchen, again no. I would stand there for 5 minutes sometimes before it hit me that I had gotten up to go use the bathroom. Conversations were so hard for me, my sound sensitivity was getting worse, and I was scared. Then, in early July the seizures came back. After over 2 years with no seizures, I was having grand mal episodes again. This news actually made me feel a bit better since I know that the co-infection Bartonella causes my seizures and I know that the antibiotic, Rifampin, is what kills off the Bartonella (in my case at least). So, we decided to do 4 months of oral Rifampin and we prayed that it would clear everything up.

The Rifampin cleared the seizures up within a couple of weeks. I was so hopeful that I even went to my 20 year high school reunion in late July. My doctor and my husband advised against it, but I went anyway. Looking back, I think I was fueled by pure adrenaline from my desire to be there. My husband couldn't go with me because he was dealing with a stomach bug. I went by myself. There was a band there so I was dealing with the most noise I have heard since 2007. Luckily, they took a break for awhile and I just tried to visit with people I never get to see anymore. However, my central nervous system was going haywire! The combination of music, loud conversation, and trying to remember names and faces was so overwhelming. I know I talked too much to people at times because if I could focus on making myself talk, it helped drown the other noises out. There are some conversations I can't even recall and I am fairly certain I made weird comments, maybe said stuff that I wouldn't normally, or didn't make a lot of sense to people. When the band started back up I had to grab a close friend's hand and head out the door as fast as possible. I sat outside and took an Ativan troche (which melts under my tongue) to help with the shakes and had a severe panic attack. I had to leave, even though the fun had just started for most people. Somehow I made it home, crawled in my bed and cried my eyes out. It took 5 hours for my brain to calm down regardless of the arsenal of drugs I have to help do just that. It took a week for me to recover physically and I ended up wishing I had never gone because I felt like I probably looked like a complete nut job to some people. On the bright side, it helped showed me just how bad things had gotten and how seriously I needed to fight again.

Then, after a month or so of the oral Rifampin, I began to have extreme pain in my shoulders, back, and spine. This pain was so severe it would trigger a seizure. So, I started having seizures from pain instead of Bartonella. Nerve pain came back with a vengeance as well. As much as I hated it, I was back in bed and in the past 5 months the only times I have left my house have been to go to the doctor and my massage therapist. Rifampin is an excellent drug to hit Bartonella, but it does not hit Lyme. So, these other issues were basically the Lyme coming out in my body again and wreaking havoc. I finished my 4 month course of Rifampin and went back to the doctor to discuss options.

My case is close to a worse case scenario for a Lyme patient. My doctors traced my original Lyme tick bite to when I was 3 years old. I then had a 2nd bite when I was 29 that gave me Bartonella and Babesiosis. Despite seeing over 30 specialists, I wasn't diagnosed until I was 34. Basically, this means that Lyme had plenty of time to invade most of my organs and body tissue. So, while we knew that I was not "cured" after 27 months of IVs, we did hope we had knocked it out more than it appears we did. So, in mid January I will be getting another PICC line placed in my arm. That is a small tube that is inserted into a vein in your upper arm that feeds into the top of your heart, so it is not something that me, my husband, and especially not my doctor take as an easy decision. We knew in my case all of this could surface again, we just prayed it would not. To put things in a perspective that might be easier to understand how I feel physically, my immune system is overrun. Not just by Lyme and the co-infections, but by other "opportunistic infections". I have never had a negative mono test since 8th grade. I don't mean my tests just show past infection, they show extremely high titers indicating active infection. The last one was done in June and it was my 7th positive one. I have also not tested negative for Influenza in 5 years. No one has been able to figure out why I have run a low grade fever (99.5-101) daily for almost 4 years now. These smaller infections hang out because my immune system is a playground for them in a way. Weird thing is that I never give anyone mono or the flu, I actually don't get anyone sick, but I do catch whatever comes around! Also, you can't hit the small infections without getting rid of the larger causal infections, Lyme, Bartonella, and Babesiosis. All that said, when your choice is to continue to slide backwards and get worse, or to do whatever you can to fight, the decision will always be to fight.

For those of you who followed my blog through my first round of IVs then you will recognize the positives of doing this now versus when we started back in 2009. My heart is healthier, my pulse rate stays much more stable (rather than going down to 40 and then randomly jumping up to 200), I am now 117 lbs. instead of the sad 95 lbs. I weighed back then because I am absorbing food much better. So, while I am not near death's door like I was when I was first diagnosed, I am far from feeling nearly as well as I could be, or even as well as I was when I first stopped IV treatment. But, these positive differences in the 2009 me versus the now me are good signs for my treatment. I was too sick back then to be able to handle a cyst-buster medication (Lyme can go into cystic form where it is able to protect itself against the antibiotics) so we pray that a strong antibiotic combined with a cyst-buster medication will be very effective. Also, I was too weak to handle any drugs that target Babesiosis (which is a malaria like disease that attacks the red blood cells). We pray I can now handle some form of treatment for this. The downside for treatment is what is called the Herxheimer reaction - that is where the treatment causes your symptoms to flare and get a lot worse before they get better. So, there's always the chance that I have to go back on oxygen, or that my pain will be more intense, or my neuro symptoms even worse. It's the price you sometimes have to pay for treatment. Also, with Lyme you never know which antibiotic will work for you. Each patient has different outcomes even if they are treating the same bacteria with the same antibiotic. In short, what works for some does not work for all. This, plus a huge lack of real research into this disease, means that treatment is a guessing game when it comes to choosing what meds to use and when you know whether they are working for you. It's uncertain and uncertain can be scary.

Now, scary brings me back to what do you do when your life slides backwards. You get scared. You wish things would change. For me, I wish things were "fair" and that after years of battling, I could be well. Yet, none of that is helpful. My brain doesn't work right so I get overloaded with anxiety and this is problematic when I am trying to be rational and calm about medical decisions. Yet, what eases this is knowing that fear is not from God. God has been seeing me through all of this and He will continue to guide me, even if what looks like sliding backwards to me is just the opposite to Him. It could be that I had to give my body time in order for my absorption issues to get better, or to rest my heart, and that now He knows it is a good time for my body to try stronger meds and treatment protocols. I just wouldn't have done it had it been up to me and my health hadn't declined so rapidly. But, it could be that God has a much better plan for my health than I was willing to fight for. I was just fighting to not feel like death...maybe His plan is to give me a much healthier life after this than I had dared hoped for. So maybe what looks backwards to us is actually very much forward motion to God.

I know this has been long, and I apologize, but it is hard to summarize what all has gone on in 2 years. It is also hard for me to be concise when I spent most of my time writing this searching for the right words to use because I cannot pull them out of my brain easily. I do want to add something else that God laid on my heart when I was talking to Him about all of this. He gave me the thought about the difference between the words "deserve" and "accept". We often find ourselves saying that we deserve to take that nice vacation, or we deserve to buy a nicer house or car, and what do we give as our reason? We always say that we've worked hard for these things so we deserve them. Then there is the flip side when we think we, or someone else, don't "deserve" something hard or difficult in our, or their, lives. This brings me to the word "accept" or even "acceptance"...this is almost always used when something bad does happen in our lives and we find ourselves saying we are trying to accept the bad news, or accept the obstacles we are facing. Here's my thought on this. If you truly believe Christ died on the cross to pay for your sins, if you know that even when we turn to Him we are still such imperfect sinners, well, can we truly say we "deserve" anything when we look at it that way? Or should we all start realizing that we should accept everything in our lives because we haven't done anything to deserve God's blessings or even His love. He gives His love unconditionally, thankfully we don't have to "earn it" or we would never "deserve it". When good things happen in our lives and we are able to take a nice trip or buy a nice house, shouldn't we accept those blessings with gratitude, thankfulness, love, and with the utmost humility? And, when the bad things happen, and they eventually happen to all of us - just in different ways, shouldn't we accept those things with the courage and strength God gives us along with unwavering love and the CERTAINTY that God can work all the things we perceive as "bad" to His GOOD? So, as it looks like things are sliding backwards in my life right now, I trust God sees the direction I am heading as forwards. As much as I have those days where I think that awful phrase, "I don't deserve all of this!" or even, "God, how can I just accept all of this?", I am choosing to see that I truly don't deserve anything good or bad. I am just thankfully accepting all that God gives me in this life because He only gives His children good things. He didn't make me sick, but He has given me the strength to fight for this long and I know He will carry me through the hard times as He has always done. So, if you are reading this and going through a period of many blessings, accept them and humbly thank God for them. If you are reading this and going through trying times, accept them and call on God to help you through them. He will. Only through Him can we do more than we thought possible!

"I can do everything through Him who gives me strength." Philippians 4:13 (NIV)