When Everyday Becomes a Chore

It's interesting how quickly this disease, or I guess any long term illness, can take a toll on you. Everyday life is quickly becoming a chore. I'm not saying it's a chore I won't "do" but it has become a lot of work just to be alive right now. My whole day sees to be centered around my medication schedule. I take medication all day long except when I'm sleeping and trying to coordinate what I eat and do around taking pills and naps is exhausting. I really have to try and focus on getting a good routine down for my treatment. My life has always seemed a little hectic and crazy and certainly unorganized. Now, however, not getting breakfast and grabbing a coffee and muffin a few times a week means much more than some extra calories and fat I packed on. All of my food choices have taken on a new meaning. They can seriously impact how my fight on lyme goes. Just one of those things in life that is easier said than done. It's not telling a junk food junkie to cut back, it is telling a junk food junkie to stop all of the good stuff. No sugar, no alcohol, no gluten, limited dairy, lots of green leafy things...Certainly not what I am used to. I have been and continue to try to eat better but I realized recently I have got to try harder.
With the way things are going I am now going out on disability from work. I know it's the best decision but it doesn't make it an easy one. I won't ever feel like I've tied up all of the loose ends at work. I also know that I can't give my best when I don't feel good. I can't feel safe doing my job if I am not at the top of my game. It is true my day to day tasks at work are not anything big to worry about. It's the emergency part that becomes a problem. If I have to work in the Emergency Operations Center during a big wildfire this summer or respond to a large structure for an investigation I have to feel good not just physically but especially mentally. I won't put other people at risk. I value my guys and the public to much to screw up. With that said, Lord knows how I've wanted to be a stay-at-home mom but this isn't what I meant. My time away from work is going to be so focused on getting better, not on just being free to do what I want. With this disease it means getting worse before it gets better. More pain, more fatigue, more exhaustion, more mood swings. I want to feel like I can participate in my familys life and not just be a by stander or more so a burden on them. Helping your children understand something like this is a tough one. I would like to never give the excuse again that mommy is sick and can't do something. As a lot of people with the disease have to deal with, on the outside we may look totally noraml, especially on a good day. But good days can still be bad and symptoms can come and go in the blink of an eye. Like on of my lyme friends said, we still make an effort to get up, get dressed, put on some make-up and a smile but that doesn't mean we are not in intense pain or still sick. You can't see the bacteria turning my insides to swiss cheese, but I can feel it. If I didn't get up and try it would be way to easy to give up. I can see how this disease could take over and I could become just a depressed heap of a person. I don't want that to happen. I know how much I want to snap my fingers and have everything be better but there are going to be some great memories during this time and I don't want to miss them just to avoid the pain and suffering. Just because I feel like everyday life is becoming a major chore, it's a chore I'll accept and do my best at!

Still Angry

I've realized over the past week or so that I am still angry over the fact that I have this stupid disease. I don't know how quickly someone goes through the different stages of emotions when diagnosed with a chronic disease. I guess everyone is different. I don't know why I expected to not really have much of an angry stage. Maybe because I was so fed up with not having an answer about what was wrong with me, I assumed when I got an answer I would just be grateful. Believe me, I am grateful. I am so thankful God has blessed me not only with an answer but wonderful doctors as well. That however does not take away from the fact that I am still angry. Angry when I am counting out my weeks' worth of pills. (I think I have finally reached close to 35 a day) Angry that my whole day revolves around taking meds and supplements. That schedule runs your life for a while. Thryoid pills can't be taken with food. Antibiotics have to be taken with food so you don't throw up. One of the antibiotics can't be taken within 2 hours of dairy or minerals with calcium. Probiotics should be taken in between meals and 2 hours away from some meds. Angry that when my medicine is working and the bugs are dying I feel like crap. Angry that I may have given this disease to my girls. Angry that my 7 yr old feels the need to run over and try to hold my arms down when I'm twitching. Angry that I have to reduce my work schedule right at the begining of fire season. Angry that everyday I am to tired or in to much pain to just live a normal life. So right now...I am just angry! I know it will pass. I have my good moments and my bad moments. Sometimes my anger makes me want to fight back hard and other times it makes me cry. I know deep down God has some crazy awesome things that are going to come out of this but sometimes it is hard to remember that.
So I went to my doc last week and got some updated blood work. One test I was excited to have (if that makes sense) is called the CD 57. In simple terms it is a way of measuring how well your immune system is working. Lyme docs want you number to be over 60. Mine was 66 so the doctor was happy. However, normal ranges are much closer to 200. My immune system has a lot of room for improvement. It is much better though than a fellow lymie I've met who actually has the same doctor as I do and whose lowest number I think was 8. I think she is at an 11 now. She has basically been told she will never get better. My doc thinks I will. My vitamin D level was really low. Crazy because I love dairy and drink milk. The low end of normal is 32 and I was 23. So another pill for that.
It was really interesting though that when he had to fill out papers for my leave he put down my three things under my diagnosis- Lyme Disease, Fibromyalgia, and Peripheal Nueropathy. The fibro is because of all of the wideapread pain, and the nueropathy is for how the lyme has messed up my brain. Still it was a little hard to swallow. Then when he had to put a time frame on how long I would be dealing with this he put 3 years. That certainly makes me look differently at if we will ever have any other babies. I wanted another one. I wanted to try for a boy. I know God is in charge and miracles do happen but until I know it's gone, I couldn't take the chance of passing it on. I may have already have given this horrible disease to my two precious angels. How do you explain to them that mommy made them sick? How do you tell your children that they may go through some of the same pain and torment that they have witnessed mommy go through. I don't even know how to tell them they have to get tested.
I'm guessing it's time for me to go to bed. I have a busy weekend ahead, including work, and although I've gotten some things off my mind, I'm starting to cry. So goodnight for now.

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.