A New Chapter for Beginnings

I’ve been up a lot of late nights, insomnia, anxiety, worrying, it just runs in my blood.  I come from a line of worriers.  Having Lyme Disease just makes it about 10 times worse sometimes.  

It’s been awhile since I’ve posted a blog, a lot has been going on in my life the past few months, a lot of good things, a lot of things that have needed to happen.  I’m hoping that as  I continue my journey to recovery or as I’d like to call it surviving Lyme Disease, I’d like to continue being able to post what has been going on these past few months as well as what my future holds in all of this.  It’s hard sometimes, especially at nights, I can’t sleep, I can’t think properly, and sometimes I’m overwhelmed with my life and I don’t want to have to take a Xanax just to be able to think clearly and feel normal.  The thoughts in my head, the anxiety that creeps in trying to overcome everything that I would normally be fine with, it’s all gone sometimes; my own thoughts. It’s like my brain just automatically sends messages to make things worse, and I can’t control it, not on my own.

I can say that in the past 2 years that I’ve had Lyme Disease, I’ve been feeling my best these past 4 months or so. Not 100%, but better than the first 18 months.  I at least can control some symptoms, but it’s not over yet, though I’m hoping one day soon it will be.  I went off of all the medications my doctor had prescribed to me, antibiotics, anti fungals, thyroid medications, all of it, except for what helps me keep my sanity and help me fall asleep.  My doctor told me I would feel good for 2-4 weeks and after that I should return for treatment, that would get worse, and 7 weeks after I stopped everything I don’t feel an ounce different from the day I stopped or for that matter the last 4 ½ months.  

Let me back track a little to give you my reasons why I stopped taking the meds and taking the bs from my doctor.  I felt like I was being controlled by a disease that shouldn’t be controlling me. I would get sick of the medications and I felt worse being on them in the first place.  After a month or so of being on them, I plateaued and have felt the same ever since if not better.  I realized I didn’t want a disease to continue controlling my life, I don’t know what God has in store for me in my future, but I know that this is not the life He intended me to live.  

In the 5 months I was on antibiotics, I had 10 teeth that were diseased with tooth decay, so bad that I had to get major dental work done.  I haven’t had a cavity since I was 18, and in 5 months for me to go from having a perfectly normal healthy mouth to 10 cavities was a wake up call on the treatment I was receiving. I’m not saying that I won’t go back to treatment, I will, but my little life that I have here in Northern California is coming to an end and a new life for me is starting very soon in another part of the country where I know I will be well taken care of and God will direct me in the hands of a very gifted and highly educated doctor in Lyme Disease.  

I have gotten to the point where I can function daily at the level where I’m at. I can hold down a job, have a social life, be able to get back to a semi normal active life style.  The arthritis in my knees has never stopped me from doing the things I love, and I’m not going to let this disease continue to stop me from doing what I meant to do.  I was given a life, a life to be lived to the fullest, which I never really realized until I got sick. I’ve lived a good life the first 25 years of it, and I hoping that the next 25 will be even better. I know God has got amazing plans for me, I just can’t wait to see what they are, but for now, I’m doing what I should have done a long time ago.  I’m literally moving on with my life and seeing what new chapter is in store for me.  

Going off the drugs and on the defense!

It's been almost 3 months since my last post. Things have been pretty busy in my life with work and figuring out my move and when I'm supposed to be over all of this.  I promise this will be a short update, but will update you all soon enough with a longer one.

I spent 5 months on antibiotics. 1 week shy of 5 months to be exact.  And through it all I made a decision which for the past few weeks I have been sticking to my guns and will continue on unless things drastically changed.  I went off of all my medications and for good reason.  I felt like I was poisoning my body and I felt like nothing was getting any better, only continually worse.  I've posted about the Herx reactions before but that is not what I'm referring to when I'm talking about getting worse.  Symptoms that only started when I started on thyroid medication and antibiotics were exasperated the more I continued on with all of these medications. Don't get me wrong, I still take stuff to help me sleep, but I've started changing things in my diet and my overall health.

It first started with a trip to the dentist to get some overdue cosmetic work done.  It was a little procedure I wanted to get done (it was free) before I was planning on leaving in August, what I found out was that long story short after a dental exam, within a 4 1/2 month period I went from having no tooth decay or cavities ( or any since I was 18) to have 10 teeth with dental decay and most of them needed to be filled. It was sort of a wake up call to me with everything I was taking.  Not only was this medication not really making me feel healthy but it was probably causing more health problems in other areas of my body that I was not aware of.  Fortunately for my sake I have dental insurance and wonderful parents, but the damage that was done was enough for me to think real hard about what I needed to do, so I decided to go off of everything, including my thyroid medications.  And let me tell you, I feel great. not 100%, but I'm getting there.

I started taking some yoga classes to get back into shape, which I'm going to continue for the next couple of months, and my heart palpitations are slowly easing off, not to the point where I can fall asleep on my own yet, but I think due to the stress of my body and the thyroid medication, it sent my body into adrenal fatigue and it's been in fight or flight mode for almost 2 years.  I'm finally starting to be able to relax, not feel as much on edge, and I've even noticed my blood pressure that even though has always been in the "normal" range for people, usually 120/80, it has finally gone down to what is normal for me 112/60.  These little things might not seem like a lot, but for me they are huge leaps. After 5 weeks of being completely off my thyroid meds, I'll get my blood checked and if for some reason my levels aren't normal I will be going to see an endocrinologist, someone who specializes in that sort of stuff.

I'm working over 30 hours a week at my job, I got a great review after my first 90 days, even a little raise ( and my little, I my mean minuscule) but I'm loving my job and I'm continuing to be trained in new areas all the time. It's really one of the only places I can go and focus on my work and not on the craziness of life, it's actually a stress free environment. I wish I could say the same about the rest of my life, but it's getting there.  Another few weeks and we'll see how I'm doing.  I even started going to see an acupuncturist and I feel good and relaxed after each session.  Before I know it, fall will be here and I'll be moving on to a new life, maybe not completely healed of this disease of surviving it and not letting it control my life.

What's Her Xcuse?

I called in sick for work tonight. The second time in the two months I've been working there.  The first time was a week or so after I had started, and I felt bad but I ended up being sick all weekend long.  Tonight, though I feel terrible, I'm not so sure if it's the flu bug that's going around, or a herxheimer reaction, in this case I hope it's the flu and it will go away shortly.

Fortunately for me, I have been pretty well off not having many herx reactions while being on medication, and for those who don't know what a herx or herxheimer reaction is, I will gladly tell you.  Basically, for people who have Lyme Disease that are being treated for it (and there are other diseases out there as well that cause this), whether it's through antibiotics or some other treatment, their body has a reaction while the bugs are getting killed off.  So really, you can feel like crap, but it's a good thing because the Lyme bacteria is getting it's butt kicked.

There are so many different kinds of reactions that people have, for very short or very long durations.  For me, when I first started on antibiotics, I would get bad headaches, and have horrible insomnia. The first month I was on doxycycline and azithromycin, I wasn't getting much sleep, and whatever sleep I was getting was not enough. I was exhausted and I felt like crap all the time.  I couldn't fall asleep and if I did I couldn't stay asleep for more than a couple of hours.  I was on and still am on an anti-anxiety to calm my heart palpitations and make me fall asleep, while I was switching between Lunesta and Ambien, both of which weren't doing what they were supposed to be doing.  I finally found a sleep medication that worked for me, doxepin, and now I don't even need to take it.  It was a very long month to say the least.

Things have gotten better since then. Just the fact that I'm off one less medication makes me happy; but, at the same time I wonder if this is the calm before the storm.  My body has been too quiet, and I wonder, am I going to have any more herx reactions before the end of it? My opinion on my health and Lyme has changed quite a bit since before I was on antibiotics.  Ask my boyfriend, he would tell you.  Like everyone, I got books, researched, read other people's blogs and I started to freak myself out on if I would ever get over Lyme Disease. I've read how debilitating it can be for some people.  Because most of my symptoms were more neurological I was afraid if my memory wasn't going to get any better, if I would keep forgetting conversations I had in the past 2 years, or longer for that matter.  I was afraid I would get to a point where I wouldn't be able to work or have a normal life; it was very scary.  It was keeping me up at night.  Forget the insomnia, I was afraid I had spent the first 25 1/2 years of my life being normal and active and I would spend the rest of my life never being able to be that person again. So I stopped, because my boyfriend suggested it, and because I was scaring myself with things that I had  no control over.

Fast forward four months and 11 weeks of being on antibiotics, I don't have those fears anymore. The first month was rough, to say the least, but I got through it. Each week, except for today, I'm feeling better and feeling stronger.  When I went to see my doc last week he decided not to put me on Tindamax, another antibiotic, because of how well I'm doing. My symptoms are fading away, and there are only a few out of the 20+ that I started with that I have left to deal with.  He told me another 6 weeks to 3 months of being on antibiotics and I will be done.  Seeing an end in sight, an actual number gives me so much relief and hope and thankfulness that God has gotten me through all of this and it's hopefully almost over.

When I first saw my doctor last summer, and after I was initially diagnosed in August, I asked him how long it would take for me to get over Lyme Disease. He told me it could take 13 months or 3 years, it just depended on how I reacted to the treatment. And I at the time I was just starting to prep for the prep of my treatment.  Seven months of taking probiotics, vitamins, supplements, and all the other medication I was already on since the year before when I first got sick. It took seven months just to prepare for taking antibiotics because my system was so completely messed up at the time.  Now that I'm on the right track and treatment, I'm hopeful this will be only a short period before I'm off of the antibiotics and everything else.  We'll see about my heart palpitations and thyroid (another blog for another night), but for right now, I'm hoping it's just the flu and nothing more.

Lyme And Other Drugs

In the 21 months I've had Lyme Disease it has consumed my life, much like love can, though I can say I prefer love to lyme disease any day of the week and then some.  With this disease, comes the amount of medications I assume any elderly person would take with health problems, though sometimes I feel like I take more.  It's not just the 12+ prescription bottles that line my night stand everyday, it's the 8-10 supplements and then the 4 different probiotics I take on a daily and weekly basis as well as a weekly shot of vit. B-12.

I'm on 2 antibiotics so far; the 17th of this month marked 2 months I've been on them, and when I get back from my vacation, a new prescription for another antibiotic awaits me when I see my doctor in a couple of weeks.  That will be 3 I will have to take, and as far as I know one of them I'm on already (doxycycline) already makes me sick a couple times a week as well as kills all the bacteria in my stomach and intestines, so I'm on daily high doses of probiotics to help.  Along with the antibiotics, I'm on thyroid medication, 2 different kinds as well.  I get my thyroid checked monthly, and my doctor isn't sure if it's the Lyme or my thyroid that's causing the problems.  Thyroid issues run in my family, so I get checked and each month my dosage usually changes, I'm not really sure if it's helping, but the combination of everything I'm taking at the moment seems to be making me feel better for the most part.

The other medications are to keep me from getting infections from all the antibiotics I'm taking, also a couple to help me get to sleep at night.  In the past 17 months I've tried 4 different sleeping medications along with 4 different anti anxiety medications. I need one to help me get sleepy as well as control the anxiety that showed up a couple months after my lyme along with the insomnia, and a medication to keep me asleep.  The other issue is that my body doesn't take to medications like most people, I usually have to take more than the normal amount for my body to respond to it properly.  I sometimes think my pharmacist thinks I'm a drug addict because of the amount of medications and different dosages I've tried over the past 21 months.  I have bottle of barely used medication because they never worked for me, and I've got bottles of medication that used to work for me but now by system is not responding to them.  I probably should take them back to the pharmacy and have them disposed of properly, just another thing on my list of things I need to do.

Then, there are the supplements.  I can't even tell you how many different supplements I've been on since October of 2009.  The protocols I need to take; detox baths, methylation protocol, Chlorella protocol, drinking stuff that tastes like A-l steak sauce but in a bad way.  Pills, pills, pills, and more pills. Fortunately I'd prefer taking 20-30 pills a day then having to drink my medications.  My new sleep medication is actually working, I can't really say that tonight is one of those nights, but that's because I'm a little restless, but between Trazodone, Ambien (trying to find the right dosage for months), Lunesta, and now Doxepin,  I finally fee like I'm getting my sleep that I need, especially since my Lyme meds kept me up for about a full month, and I got horrible sleep.  But my new medication, in the generic form has only liquid or capsules available and since I need less than the 10mg pills, I have to take the liquid which honestly tastes like grape kool-aid without the sugar and a bad after taste.

Fortunately through all of this, though I have some days like my "I Quit Lyme" post where I've had it.  People, friends of mine try to be encouraging and those with lyme or know someone who has lyme tell me their story or I've read their blogs, but honestly after reading all of their stories it makes me scared that I'm going to be living at home for the next year until my doctor thinks I'm well.  Coming up on 2 years here in a few months, I know people have been through a lot worse than I have, everyone's Lyme story is different, but I feel better than I have since starting on antibiotics.  I still have some lingering issues but I have a feeling they are more related to my non active lifestyle I've had the past year and a half.  So I'm going to start slow, I'm anxious to just join a gym and get active but I know I need to take things slow after not being able to be active the way I used to be.

Two summers ago, before I got Lyme, I played in a softball league in Southern California for the summer.  We had a couple of double headers, I played at all but one game that summer, we even won our divisions championship game, it was amazing and wonderful.  Last summer, I had the chance to play a church league (pretty non competitive compared to the other league) softball game. I was so excited to play my favorite sport, one that I'd been playing for 16 years of my life, and after the first inning I felt like I had played a triple header. I was so completely exhausted and consumed with fatigue. I did play through the end of the game but in all of my years of playing softball, even when I played a summer with a fractured wrist, I had never felt so defeated and useless in a softball game.

So there it is, my pain and my passion rolled up into one post for the evening, or I should say morning since it's 4 am in Texas.  I don't want pity, and honestly I don't want to hear the horror stories of people's friends and family who had Lyme Disease and it took them years to get over it.  I'm a fighter, I always have been, and I still am.  I'm going to beat this.  This will not take over my life and consume it into its fiery grasp. One day I will look back on this as if it was just a dream, or a nightmare that finally has ended.

Another Long Night

It's a quarter to 7 in the morning and I haven't slept a wink.  I even took my sleeping meds which do help me to fall asleep, but after my night of tossing turning and part crying fest I gave up to embrace sleeplessness my body has fallen into.  Fortunately I only work a few hours today and probably can get 4 hours of sleep before I need to wake up and start getting ready for work.  Also, I'm off for the next few days before another long work week.  I'm looking forward to my time off; a time of rest and recuperating.

Though I'm excited about my new job,  and I feel like my life is getting back to normal, There is that creeping fatigue that comes over me if I do too much or work too hard or too long.  Not only am I physically spent, but emotionally as well.  Don't get me wrong, I love my job, I have fun and it feels good to do some honest work in a day.  But I also look forward to my days off where I can just relax and recuperate from the previous days of work.  I need that. My body craves that.  It's still one indication that my lyme isn't gone, that, and my insomnia, something I've been dealing with since I first moved back to my parents in Nov. of 2009.  After this week I won't be working so much and then I'm heading out of town for awhile, hopefully for some R&R,  I hope my travels will be less exhausting than my little vacation I have planned.

Well it's off to bed for now. Lets hope I can get a little sleep before my work day starts.

I Quit Lyme

My old roommate in college had a phrase she would repeat every time we had midterms, finals or life in general was just overwhelming she would say or usually yell "I quit life." Of course we all knew she was just kidding and was a little stressed out with college, work and life overall, and to this day I still thinks it's a little silly but something I'll always remember her by. Today I quit lyme. Not literally, but this weekend I have thrown in the towel so to speak and give up.

I just started a job a few weeks ago, to get my life a little more normal. I started on new sleep medication to help me sleep better and have little to no insomnia, but after working 6 straight days and being emotional, mentally and physically exhausted I couldn't take it anymore after work last night. I was emotionally high strung, a little cranky, and completely exhausted; all ingredients for a self pity party and a good long cry ( which I needed and continued tonight.)

As as sat in the shower with hot water streaming down on me I began to cry out, hoping that no one would hear me, and I just sat there crying and contemplating my life at that very moment. I can count on my hand the amount of times I've had a mini break down or a pessimistic day during this whole Lyme disease thing. 4 or 5 times in the last 19 months, this one though, was a doozy. I thought about my relationship with my boyfriend, why I didn't deserve to be with him, and then I really got down to it, the real reason I was so upset and frustrated. I've been so optimistic these past 19 months with everything I've gone through but I just couldn't pretend anymore. I don't think I knew I was pretending, I just didn't know why I was so upset and hurt, and then it hit me. I was angry with God.

All this time I have felt and still do that God has a reason for all of this, not once have I been angry, but in reality I am. I'm hurt and frustrated by the fact that so much has gone on in my life the past 4- 5 years and this is the icing. I've suffered through death, depression, failing out of college, surgeries, losing my home of 17 years, all these things that are just freckles in comparison to one's life, and then I get sick and I can't handle it anymore. I'm hurt, I'm done, I just can't do it anymore. I'm not giving up, I'm just giving in because I can't take anymore of this pain I have everyday inside of me. I just want it all to go away.

I'm living in my parent's home, free, have a job to save up money for when I move one day, but I'm unhappy. This home is not mine, I feel like a guest most of the time, I feel like I've lost my home somewhere and I don't know where it is. I'm in this town waiting, just waiting to see what the next move is and it's taking a toll on me, so I quit, I surrender, I give up, because I can't handle anymore of this and I don't think my sanity can last much longer.

What were we just talking about?

I usually hate Daylight Savings Time, in fact I still do. Fortunately, it crept up on me last minute this year and only knew about it a few days ago so I wasn't dreading the losing an hour of sleep for like a month. I still don't like this day because with or without Lyme Disease I lose sleep and I'm sure it's going to take awhile to catch up on my sleep again. 2 am, it's not so bad, but I know I'll be up for probably a couple more hours before I can fall asleep.

I had a list last night of things I was supposed to do today, other than wake up and eat dinner, the rest of that list got lost in my sleep and utter forgetfulness to do anything these days. It's like my brain has this switch; sleep, eat something or sometime, go to room, spend hours doing nothing or talk to my boyfriend. I like this list, don't get me wrong but I feel lazy, I AM LAZY, but my brain does nothing to turn the switch off. I would love to go and take a walk when the weather is not too crazy outside, or clean my room, do laundry, get ready for my huge move to Texas; but somewhere in between all of that thinking is nothing. I forget. My brain shuts down. All I can think of is what I am doing at that moment and even sometimes I forget that too. I had a scary moment the other night. I was talking on the phone with my boyfriend and we were talking about something interesting and as soon as we changed subjects I had no clue what we had just talked about for the past 15 minutes until he said something again about it about a minute later. I was about to ask him what we had just talked about, but it scared me because that has never happened before.

Having Lyme Disease is very frustrating at times especially when you have more neurological symptoms than anything else. Lyme fog or brain fog, forgetfulness, poor memory, fatigue, confusion, not being able to think of words, not remembering where you are driving to, anxiety, insomnia - these are just to name a few symptoms of what I deal with everyday. The fogginess has pretty much left since I started on Vit. B-12 shots in January, which also helped my energy level for a short time. My memory which used to be excellent is shoddy at best, sometimes people have to remind me of conversations I had with them just so I know what were talking about. It scares me sometimes that this is it, this is what the rest of my life is going to be like. If I had more musculoskeletal symptoms, like joint pain and what not it wouldn't be such a big deal. I've had degenerated knee arthritis for years in both knees, multiple surgeries, I can deal with pain, I've had to. But this is a completely different pain, a pain I can't simply take a pill for or fall asleep to it or stretch and exercise it out. No this is a pain I can't even touch because it's in my brain, and it's the pain of losing my mind. That's what it feels like, slowly but surely.

I know, I know, people tell me it's only going to get better and you'll heal from this, but the horror stories I've read, I'm in my mid 20's, I'm too young for all of this. I'm not throwing a pity party, I'm just scared that this isn't going to leave me. I've been on antibiotics for almost a month now and I can say that I do feel better, not ready to pack up and move to Texas better, but overall I'm feeling better. If I can get my sleep,then maybe this will get even more better. For now, it's waiting, hoping, praying that all of this will soon pass and the short amount of time in my whole life I spent with Lyme Disease will feel like a dream one day.

Tonight I'm having a little bit of a hard time, but most days I'm optimistic. At least now I'm on antibiotics, now it's just the waiting to heal. Whether that takes another week, month, six months or a year ( I pray it's not a year) I'm going to be hopeful and optimistic and look forward to the days where I can have a good night sleep without any medications, I can play a game of softball without tiring by the end of the first inning, and I can go live my life to the fullest extent I can, knowing what I have gone through these past 18 months. This is a trial God has given me in my life, I hope that at the end I can learn and hopefully help someone who is going through I was have gone through.

Nights of the Living Insomniac

It's 4:30 am, a pretty typical night for me. Try to go to bed before midnight, toss and turn for a couple of hours sometimes I fall asleep, sometimes I'm up, like tonight; and that is with taking prescription sleep meds. I thought I had it figured out. I've been dealing with insomnia for about 16 months now. It first started out with me waking up in around 3 am with an anxiety attack, for no reason. I wasn't stressed, I was back living with my parents, no school, no work, nothing. But I couldn't get sleep and it was making me go crazy. Fast forward a year later, still dealing with insomnia issues but after trying different sleep medications, going and doing a sleep study, I got on a better sleeping schedule. I was doing really well in January. I was only taking my anti-anxiety medication at night to help me fall asleep and keep my anxiety down (another side effect of the Lyme disease), but as soon as I started on antibiotics, it's like my body does not want to sleep, it does, but I am so messed up on my sleep cycle that I get sometimes only 4 hours a night or sometimes 11, which usually puts me at waking up around noon or later. It's been a frustrating cycle, one I need to break. If sleep medication isn't helping I need to find out if maybe my antibiotics and everything else I'm taking is making me not sleep. I need sleep, not just because it's restful, but also because I need it to get healthy and well. The more stress I put on my body, the more time it will take for me to get over this, and believe me 18 months is long enough to feel this way. I'm hoping just a couple more months and I'm back to being normal and well.

Stepping into the Light

I've never been one to keep a steady journal, or blog regularly, though I've always had a passion for writing since I was a child. I would go months and months without writing in my diary or post a new blog but in the end never continue on with it. This I'm hoping will change or at least will be different as I'm going through this stage in my life. In August of 2010, after 11 months of suffering through sickness, pain, doctors, tests, insomnia, anxiety, exhaustion and feeling like I was going crazy, I was diagnosed with Lyme Disease. The relief that flooded into me after hearing the initial diagnosis was overwhelming, but I finally had an answer. One day I'll or maybe it will take several, I'll write about those 11 months and these past 7 months of waiting until I was able to start treatment. It came down to this; I was done, I couldn't wait any longer on my doctor and I needed to stop putting my life on hold for this disease that has been slowly and painfully taking over my mind and body the past 18 months. So now I'm on antibiotics, large doses, and I'm not really sure where or when this will end. I'm hoping only a couple of months. We'll see. Until that time, I'll be here, writing, putting down my thoughts as I struggle to overcome this disease that has taken so much of my time.