new symptoms

Is been almost 3 years since my lyme disease started. In that time I went through horrible pain, insomnia, anxiety, thinking I was going crazy.

Now that I've been in texas for almost 9 months and have been working at my job for the last 8 months,  I've been going through a lot; a lot a good things a lot of stress; a lot of different things. I've met some incredible people and I'm really thankful for the doctor and I have. Since it's been 3 years I thought, I thought things were getting better, and I'm not going to lie they have. These past 6 months I've been seeing a doctor, one whom I really really love, my job is going great I couldn't ask for anything better. But as lyme disease is and  anyone else knows how lyme disease goes, this battle is not over.

At first I thought I had a sinus infection hoping it would go away like everything else. It got worse, I saw the doctor and she changed my antibiotics. I've been experiencing numbness in my feet numbness in my hands numbness in my lips. My anxiety, though I have control still feels like its bubbling up inside of me and I can't control it , especially at night when I can't sleep, my insomnia kicks in my paranoia stirs. I'm hoping being on the antibotics long enough, the symptoms will go away. But I'm still fighter no matter what I'm not giving up.

My identity

It's been a good 6 months since my last post. I had plans to move, make a new life and start a fresh, I can say that I did all of those things and I sit here tonight, writing, trying to take it all in, all that has happened over the 5 months that I have moved and started over.

One thing is for sure, my Lyme is still here, with me. I found a doctor, within the past few months and it's been great but tonight, today, was just one of those days where I just felt lost, felt homesick, felt like I'm losing myself to everything around me. I'm so grateful for this move and change in my life, I honestly believe God has me exactly where He wants me to be, and I know that the "Will of God will not take me where the Grace of God will not protect me."

Today has been a hard day, I feel like my illness, has become a part of my identity, of who I am, and I don't want it to be because I don't know what's going to happen with it. I have no idea if I will ever get over this, or if this is something I will learn to "deal with" the rest of my life. Nights and days like these, where I am overwhelmed by the stress and anxiety of it all, I pray that God would show me a way out, show me how to get rid of this horrible thorn in my side that day in and day out gnaws at me.  My days like these are rare, and far and few in between, but when I have them I'm lost. I feel like a fish out of water and I don't know what to do other than pray, and ask God to heal me or help me with this burden I carry.

I have always been such a strong willed individual, but this breaks me down to the core and I get scared. I know tomorrow is another day, another different day that will bring me new challenges and new hope, but for tonight, I feel as if the weight of the world is on me, and all I can do is call out to God and ask Him to comfort me in times like these.

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.