I Don't Want to be a Chicken

I'm going to keep this short since keep saying I need to go to bed early and every night I'm up way later than intended. So my herxes have definitely increased with the full dose of doxy. It didn't happen right away like I thought but the past 3 or 4days with the exception of today have been a little rough. The joint pain has not been as much but a lot more nerve pain, mostly burning or pins and needles, and the twitching. I am trying to have a sense of humor about it all. I have never been good at laughing at myself but I figure now is a great time to learn. Laughing is good for you and I want to take the edge off for everyone. So my husband and I have been trying to come up with a nickname for me. I told him I could be his spirocutie which just made us both laugh. He said because "Twitch" is already taken (by a pro motocross guy with terrets) maybe he could call me "Jerk". Ha, ha, ha, honey very funny is all I have to say to that. So my twitching or jerking has been bad which can be upsetting to everyone. Freaks my husband and the kids out sometimes. So the other day my twitching was causing me to make my right arm punch up sometimes a few times right in a row so I just looked at my husband and said "Rock On!". We laughed. A common twitch with lyme is called the lyme shrug which is kind of like shrugging your shoulders. Here I was doing the lyme shrug and my leg kept coming up so my 7 yr old says "Mom quit walking like a chicken". She proceeded to immitate every twitch I had for the next few minutes which just made us both laugh and laugh. It felt good. In all honesty though I don't want to be a chicken...:). So we'll see. I started my second antibiotic tonight-tinidazole. Unfortuneately this doesn't mean I get to stop the doxy. Two meds killing the bugs can definitely bring on the herxing. Praying it is tolerable. I also started on naltrexone, which in low doses, is supposed to boost my immune system. That is a good thing but it can also mean bad herxing. When my immune system kicks in and starts killing bugs on top of the meds it can really kick your butt. At least I know the bugs are dying. I guess I need to bring this to a close since I meant to go to bed early. Now I'll just be in bed on time. Who knows when I'll fall asleep.

Green with Guilt

Green with guilt. Thats how I feel right now. Not green with envy but green with guilt. Since green is the color for lyme, everything seems to take on a green tint from my perspective. I am still working through trying not to make everything in my life revolve around this stupid illness but right now it does. It is very hard to not have a conversation where lyme comes up. "How are you feeling?" someone asks, I start jerking or twitching, I have to take a bath to help ease my pain, I can't have a coffee now because I just took my meds, I have to eat now so I can take my meds...on and on it seems to go. Believe though, I am trying to not talk about it so much, to not complain, to not share to much info. I try and remember when most people ask how I am feeling or doing they are just being nice and don't want a full update on all my latest aches and pains.
Now to where the guilt comes in. I am much more of a giver than a taker. I think part of it is just being a woman. We like to nurture people and take care of them. Part of it is just me. Now I am not by any means a great housekeeper or cook or anything like that. At the same time though things that I may normally attempt to do, enjoy doing, or feel are my reponsibility I have a hard time when anybody else does them. That includes my husband and it doesn't usually matter why they are doing them. With that being said, it has just caused me tremondous guilt to have to be down and out and rely on my husbad so much for things I normally do. I don't like not functioning at my full capacity and when I just can't and he has to or my mom or dad has to help it is beyond frusterating. The worst part is, this is only the begining. I can still get up and tend to some if not all of my normal day. If I end up being down for a significant period of time Lord knows how difficult that is going to be.
I must admit my husband has been just awesome. He has been so helpful and forces me to rest or eat even when I don't want to. He has been my rock when I have completely freaked out because I am so scared or so sick...the one funny thing is though the twitches scare him. Just the other day I was showing him a video of a poor girl going through a horriffic herx and he starts saying how I shouldn't watch that stuff it's just going to make me worry or whatever. What happens the next day, I start twitching pretty bad and he says you are freaking me out, I can't stand it when you do that. I just started laughing. I have tolerated my twitching okay but he can't handle it. Anyways...that part gets hard. I mean having your loved ones have a difficult time with your symptoms. I know my mom hates the twitching but the worst is my girls. My husband was gone earlier today and the twitches came and my 7 yr old goes "Mommy stop that!". She grabs my arms and tries to hold them down. I have to reassure her that even though it looks a little scary mommies okay. That breaks my heart. I am still dreading having them tested. Talk about guilt. If my girls got this from me I am going to have a very hard time with that. I realize it's not my fault. I realize I didn't know I had this when I was pregnant but anything negative that happens to your kids because of you is hard to deal with.
I do have to say I am so thankful to God I was never able to donate blood. I have a serious issue with needles and always have. I knew how important it was to donate blood but it took a long time for me to agree to do it. The 3 times I have attempted something has always happend that stopped me from being successful. I realize now that was probably God's way of keeping me from unknowingly infecting anyone else. Definitely a positive thing in this mess.
We'll see what the guture holds...

Losing My Identity

I feel like so much has gone on in the last few days it is hard to know where to begin. So the doxycyline has been kicking my butt to say the least. Yesterday was probably my worst day so far. The good news is yesterday is gone and today was much better. Tomorrow is yet to come. I tried increasing the doxy on Wednesday so I can get up to my full dose. I think that is why yesterday was so bad. So I went back down today and will try again tomorrow. I have got to find a good combination of food to take so I don't get "sick" with this medicine. I learned the first morning I had to eat something. That worked fine until yesterday when I didn't eat enough. The bummer is I can't take dairy or probiotics within 2 hrs of the medicine. So trying to eat enough to not get sick that doesn't include dairy especially at breakfast is hard for me. Add to it the thyroid med I take. I can't take that with food. I am pushing it to take it and only wait 1/2 hr to eat. Trying to schedule food and meds around each other is a little crazy. Now add another handful of pills I got...very hard.
Here's how yesterday played out. Wake up and get to go to my new primary care doc. He was recommended to my by my llnd. My llnd requires all her patients to have a pc doc. She only specializes in a few things so I totally get why she wants that. I have been going in circles the last year or so as I was trying to find out what is going on with me. I have switched pcd's a couple times. After the last guy basically told me the lyme disease was non-sense, even with the positive blood test in his hand, I was beyond angry. So I go see the new doc and could not have asked for anyone better. Back to yesterday...I was late leaving for my appt. This doc is in Pacific Beach and I had to be there early for paperwork. Crazy morning as usual by my husband was taking the kids to school. I am in the car and naseau hits me like food poisoning. Now I'm crying, trying not to throw up while I'm driving and make it to PB in 30 minutes. My husband ends up taking me to the doc, we arrive just in time for my appt. When I called to tell them I was late they said no problem, come in and we'll still get to you. Sweet office staff on the phone, sweet and helpful in person at the office. We both go into to meet the doc. He just looks friendly. "So what brings you in?" I try to keep my story short and sweet (ya right) and give him copies of blood work, etc. He basically agrees 100%. He shares his thoughts on how things may go. By the way he has already seen a few other lymies before me. He also believes in the importance of other therapies and things to help me through this. The one thing I didn't want to hear was he is expecting to at some point have to go the IV route with my meds. He just said when someone has been sick for so long it is hard to get away with just oral meds but we will see. Either way I left feeling so blessed for a doc that cares about getting his patients better and not just covering up symptoms.
With all of this going on, new meds, new doc, trying to do insurance for work, and figure so much out it has been on mind that I don't want lyme to be my only identity. I struggle with this disease and everything it is doing to me, my life, my family and how it is always on my mind and trying to let it be the only thing about me. I don't want to push family, friends and co-workers away because they only thing they hear from me is about this disease and how crappy I feel. How do other people do it? The women just diagnosed with breast cancer, or dealing with a child who has a disablility, or the man who just lost his job after 20 years...how do you keep those things from becoming who you are? I know it is something I need to pray about. I need to keep a positive attitude, and keep focused on the things I love and make sure I have good friends to keep me in check when I have crossed the line.
I go back to something I shared when I first started this blog and I just shared with a fellow lymie tonight on her blog...this is where we can come and vent and let it all out. We need to or we will go crazy. We also need to remember people reading out blog come here voluntarily. They can close us out whenever they have had enough. So if the whining and complaining get to much sometimes we are sorry. To save our sanity, our marraiges, our kids...this is what we need.
I appreciate the love and support of family, friends, my docs, and fellow lymies I have never even met, as I am just begining what I can only guess will be the most difficult fight of my life. The only thing I can imagine being harder than this right now is finding out that either of my girls have it. I am chosing to trust my God and Savior to bring me through the tough times. I can't even begin to think about the strong woman I will be once I have passed through this fire. That is the hope I am holding onto.
For now I may just choose to believe that I am not losing my identity...I just have yet to find it!

One Last Hoorah!

So last Thursday I had a doctors appointment with my llnd. We did it over the phone which was nice. Her price is the same for the appointment but I save on gas and time off. The results are in from all of the co-infection testing. To get to the point and not make this to complicated my blood work showed no signs of having babesia but did show signs for erlichia. Like so many things in life, and lyme, nothing is definitve, 100%, without a doubt. My llnd is not convinced that I don't have babesia but we aren't going to worry so much about tackling that first. Some of the lyme antibiotics will also tackle the erlichia which is good. We talked about the results, how I had been feeling, and then the big question...Do you think you are ready to start antibiotics? It is almost a trick question. I am ready because I want to get this over with as soon a possible. I am not ready because I am afraid of what may come. It's almost like I should be hoping to feel absolutely miserable because that means the medicine is working. How can you hope for that? So yes I am as ready as I am going to be. The decesion is to start on two different medications- doxycycline (from the tetracycline family) and tinidazole (in place of the more commonly used flagyl). I have to start the doxy slow because I have been herxing with just supplements so the doc pretty much says be ready. When I'm on full dose doxy it will be 400 mg a day. That is double a standard dose. My llnd explains that only 200 mg merely stops the nasty spirochete from growing but doesn't kill it. Because there are so many strains (if thats the right word) of lyme, it can take on different forms (ex. cyst form), and it can only be killed during certain points in its life cycle you have to tackle it from multiple angles with multiple medications. That brings me to use of tinidaozole. This is being used in place of the more commonly used and less exspensive flagyl. However tinidazole is much easier on the gut. With the amount and timing of meds, things like trying to control yeast issues and keeping your stomach as happy as possible become a priority. Lots of probiotics and a totally new diet. I am so blessed to have a llnd that believes and is knowledgeable in the natural things plus the antibiotics to kill this disease. She just released a book a few weeks after I became her patient called the Lyme Diet that tackles everything you need to know to make this process go as smoothly as possible. The only down side to that is I am a junk food junkie to the max. I have always had bad eating habits and I love and usually crave junk food (mostly the sweet stuff). So to give up things like dairy and try to go gluten free is certainly not the easiest thing for me to tackle. Trying to do that, plus eat enough so I can keep up energy, and squeeze it all around my med schedule and what I can eat when...I need a miracle. The other thing I wanted to mention before I sign off for now (I have a bunch of topics I could cover right now) is that a 1 month supply of my doxy, which is 120 pills, from Target without insurance $20. Thats is $20 bucks. The Target pharmacy is one of new favorite things for a lot of reasons. I figured my approximate total pills with meds I was already on, supplements, new meds...ya about 28 pills a day. I got one of those $10 pill organizers that holds am, noon, evening, bedtime for each day of the week. Crazy! All of those pills doesn't include my liquid and powder supplements. My husband said I'll be full from the pills and wo't have room for food. Let's hope he's not right. So now onto why I titled this post "One Last Hoorah!". That would be because I am in this odd state of mind just kind of numb today as I process everything and what the future may hold in the coming weeks with how bad this could get. I gave in to the craving for something sweet knowing I really need to change the diet starting, oh yesterday, or last month. But now the real stuff is coming so I sat in my car this afternoon, by myself, after running into the grocery store, and consumed a piece of triple choclate mouse cake. Margaritaville was on the radio and for a moment I wished there was a way to be in a hammock, on the beach, numbed by a good margarita, while fighting this stupid disease. Back to reality though...so one final, kind of pathetic, hoorah and now the real battle begins!

Not Sure What to Say

I figured I would become a blogging maniac since I almost always seem to rambling on about something. I'll admit sometimes the on-going chatter is only in my mind but it seems to be endlessly coming from me in some way. I attempted to do a little update the other night but knew I should be really going to bed early. I got a few things started and just decided to not bother and try again another day. So here I am, late afternoon, not at work because I had the day off for a field trip with my daughter. I really have some things around the house to do since I am not feeling to bad but I wanted to put a few minutes in to clear my mind and make sure I am keeping up somewhat on this journey. Knowing my last post was about a week into dealing with this diagnosis and what I was feeling and thinking I don't think I can say much has changed. I did go ahead with the rest of the blood work to test for co-infections that my doctor wanted. I did start something new. I did take the positive test to my primary care doc...Okay so let me go over that. Unfortunately, just as I thought my pc doc really didn't want to have any of it. He say the positive test results, still feels I don't have it and even if I did it's not a big deal. I mean he basically asked me or stated something along the lines of "You know you don't have anything seriously wrong with you, right?" My response was really just a blank look which he responded "I guess you don't fully believe that..." and continued to expound on why I have nothing seriously wrong with me. It took all I had to not explode in anger or burst into to tears or both. The more I thought about it, maybe he is right and I am wrong. Why on earth should a women in her early 30's who has been fairly active her whole life and has no crazy medical history be concerned when the last 6 to 10 years of her life, most specifically the last 2 1/2 yrs have gone something like this...dizziness/lightheadedness that would come out of no where, ADHD diagnosis, not able to fall asleep or stay asleep, fatigue that has just gotten worse, heart palpitations, shortness of breath from things like climbing one flight of stairs, heart rate that has exceeded 270 bpm at least once and spontaneously jumps to over 200 just because, muscle aches for no reason, numbness-tingling-weakness in arms, legs, and face, nerve pain-burning and pins and needles, asthma diagnosis, anxiety and depression diagnosis. Oh that's right it is all anxiety and I have done it to myself. No of those symptoms really mean anything. Are you flippin kidding me? This is where my ability to hyperfocus, talk a lot, and research online and through books plus (and most importantly) the help of God paid off. I know in my heart that LYME is what has been making me so sick. I am just dumbfounded that so many in the medical community are unaware and/or uneducated regarding this disease and that on top of it they won't admit it. Instead of telling me they have never treated anyone with Lyme, they haven't studied it much in recent years, they are not comfortable treating it...anything that would be an honest answer they would rather make me feel like I'm losing my mind, making things up, or that it may be real but don't worry, it's not going to kill me. Put your pride and financial gain aside for a minute and go back to treating patients the way you should. Don't throw medication at me that will mask or reduce my symptoms and be satisfied with the fact that you don't know why I have the symptoms to begin with. You don't have to believe in God to at least consider that our bodies were designed to function a certain way and when symptoms appear that were not there before it is a sign that something is not working right. Shouldn't you want to fix that as a doctor? If I were a doctor I would want to help people stay healthy to begin with and help them heal and get back to being healthy when something was wrong. I guess this is just part of the huge mess our "health care" system is in. Doctors getting bonuses from drug companies for using their drugs...Insurance companies making decisions that could save or take a persons life based on how much money they may lose. Guidelines for diagnosis and treatment of diseases being written by doctors who have something financial to gain or only using papers written by themselves or their universities when writing these guidelines. It is a very sad and disturbing time we are in...you have to take charge of your own health. The doctors and insurance companies for the most part don't have your best interest at heart.

Week 1

I've officially completed my first week of being a "lymie" or a "spirochick". Lymie is how a lot of people with lyme disease refer to themselves. Spriochick is a name I've seen a few times for some girls with lyme. The name comes from the nasty little spirochite bugs that are making us so sick. I still feel like I'm caught somewhere between a state of numbness and reality. The image of the test results seem to run through my head "POSITIVE"! Where on one hand I am so thankful I am not crazy and this isn't some pyschosomatic thing my brain made up...I'm not going to lie, I'm angry and I'm scared. My whole world is being turned upside down by some little bacteria just causing havoc all over my body. That inturn affects my marriage, my kids, my family, my friends, my job, my finances, etc...If this was just a matter of taking some antibiotics for a few weeks and getting on with life then no big deal. Ths disease has messed with me so long I'm not even well enough to start antibiotics without an almost guarenteed trip to ER. Add to it the fact that I look normal. If you saw me walking down the street or driving by you probably wouldn't have the slightest idea the pain and problems that are just begining to show themselves. I know though, my family has some idea. When my husband looks at me funny during church because the involuntary ticks and muscle contractions are making my whole are or leg move. I just have to shrug my shoulders. No one can tell right now when my face goes numb but I have to look in the mirror to see if paralysis has set in. I know when my heart has jumped up to 200 + beats a minute or I am out of breath climbing a flight of stairs...no else may even notice. To think this is just the begining. I know I have to fight through this and take the medicine to get better. It's not easy when everyone says it's worth it in the end but you are going to go through living hell first...With the help of God, the loving support of my family and friends, the knowledge of my doctor(s), and my will to be here for my kids- I will get through this. I will survive and be a stronger person for it. I am hoping through my good days and bad that I can share what this disease is like, be able to learn something about myself, and provide support to others along the way.

The Rollercoaster

I didn't think I was going to jump on the typical roller coaster of emotion that people normally do following a serious diagnosis. I guess I thought since I had done all of this research about Lyme and had just wanted an answer so I felt like I could move forward, I figured I was going to be okay with it. Over the last few days I don't know that I have been okay with it. I don't know how I have been with it. In some ways I have been almost numb. I am definitely scared. I wasn't scared before but I am scared now. I have a million questions going through my head that where I thought I had all of the answers. I knew so much already now I feel so unsure. I am realizing that the reason I have been tested to my breaking point so many times recently and had gotten to a place where I felt I couldn't take anymore and had to learn to totally rely on God was for this moment. I have no choice but to rely on God to carry me through this. I have to rely on the fact that God's strength and not my own is the only way I can survive and fight back. He has a plan in all of this and all things are used for good. I just have to allow His glory to shine through this time and let Him carry me.