Where to Begin

It's been a while since I have blogged about what's been going on with my life and Lyme and all. I am not even sure where to begin. The last few weeks have been crazy and full of ups and downs. We were able to have a little get away the morning after our last class at church. We went to Knott's Berry Farm and Soak City for my 4 yr olds birthday. It was fun but exhausting. I had to go take a nap at the hotel in the middle of the day but glad I was able to do that. We came back and it has been the move from hell ever since. If I hadn't mentioned before, we are moving in with my parents. It is all due to my Lyme. Physically, mentally, emotionally, and financially we are going to need to help. It is hard for a lot of reasons. The biggest one being that we had finally gotten to a good spot with our relationship with my parents and having all of us under one roof is going to be difficult no matter what. With that being said, I am so blessed and thankful that my parents are able and willing to help us out.
So with me being disorganized on regular basis this move have been the worst one I have dealt with. We just ended up being crunched for time and it seemed to never end. I also have no idea how we can have so much stuff. I mean we have a ton of stuff after we sold a ton of things at our garage sale, and on craigs list and donated the rest. I am slightly mad at myself that I could let us accumulate so much stuff but I'm learning to just get rid of stuff and not buy more. The whole move just required so much physically and mentally from me that it was very hard to hang in there. My husband worked so hard to pick up my slack. I mean there were days where I couldn't do almost anything. I was just drained.
Now for my Lyme status. I don't have a clue if I mentioned all the new meds I'm supposed to be on but I have 3. One of the meds is a trade out for one I was already on and the other 2 are new. So when I add the last one in a few days I will be on a total of 4. The 3 I'm on right now are starting to take their toll on me. My intestines are just being destroyed and I know this is the just the beginning. Shortly before we went to Knott's I think, I went to the dr for a follow up and we did some more blood work. So about 2 weeks ago I went to get the results. Well the inflammation levels were definitely up. It made sense because I had a sore throat and my symptoms were fairly bad. The worst thing was my CD-57 count was down to 36. Just to recap, that number has to do with how well my immune system is doing. A normal healthy person comes in somewhere around 200. Lymies are doing good if they are over 60. My first test was 66. Now that my number dropped so low I'm a little concerned. I guess it's all just part of the battle.
I guess to end my update I just have to say not being able to handle a full day of housework or putting stuff away from the move really takes a toll mentally and emotionally. I am so frustrated with how much needs to be done and the fact that just driving a block to get my kids seems like a monumental task just kills me. I feel useless and it is a very bad feeling to have. Oh ya, and one last thing disability has not made up their mind. I am so thankful we had a successful garage sale and got our security deposit back because that makes up for the paycheck I won't be getting on Thursday. It was hard though to sell our couch, bed, dining room table, and my surfboard. I knew it was necessary. The only unnecessary thing was the added test to what we learned in our finance class about stuff. Our 42" flat panel plasma broke during out move. I thought we were so careful. I had a good cry over that but I have worked it out. That's it for now. I need to give some details about the Lyme and treatment and all but I'll do that later. Thanks for stopping in to read.

Angels Among Us

There is country song that I've heard, I think by Alabama, that talks about believing in angels amongs us, coming to us in our time of need....well that very think happened to my husband and I the other night. To back up a little, we have been taken a finance class at our church for the last six weeks. The class was fairly small. I was totally expecting to go in there and get down and dirty about our money, budgeting, getting out of debt, I guess all of the usual money issues that most of face. Instead the was class about giving and about generosity. "Where you treasure is, there your heart will be also" kind of thing. I realized very quickly how important this prinicpal is when it comes to finances. I've read books, budgeted, and tried different methods to get out of debt but hadn't had some total transformation of my money situation. This idea truly was key because if I didn't change the way I veiwed my money and what was important I could get out of debt but would end up in the same place I had been...back in debt. Anyways, the class was good and I enjoyed it. One of the things we did each week was to share prayer requests we had. The last two weeks of class my requests was kind of the same. I felt (as you may have seen in my previous posts) that the devil was working overtime to make me miserable. He was doing a good job of it to. I felt bad physically and was just over stressed and worried about work, the lack of work and of course money, the move etc. So on the last night as I shared my request, it was just that I was able to let go and let God. I had worked my last day for a while, and still had not decision on my disability claim and knew the paychecks would stop in a little less than two weeks. I was basically panicked. Here we had this trip to Knotts Berry Farm already planned and paid for for our daughters birthday, the car just broke and cost us an additional $500 and it seemed like a hopeless situation. I knew though that the devil wanted me to feel that way and that all I could do was pray and ask God to be in control of the situation. It was out of my hands, and still is. So the last night of class comes to a close and we need to pay for a book we bought to help us get on track with our money. I was dollar short in the cash I had on me and the couple that taught the class said don't worry about it. So we go to leave for the night and someone stops me and says don't loose your book there is something inside for you. We get home that night and there is this beautiful card with a fairly big monetary gift inside. I burst into tears. Why did a virtual stranger feel compelled to help us. It was so mcuh more the thought than actual amount of money. But in that moment, I realized that God was in control. I almost didn't go to class that night. I had told Ryan to go by himself. I just didn't feel like it physically or mentally. He said it was the last class and I knew I would regret not going. I didn't let the devil win that night. I was rewarded, my family was rewarded. The whole lesson we had been learning the past six weeks was brought home with that gesture and I will be forever thankful. Angels among us is what those people are.

Learning to Let Go

Things have continued to spiral downward at an ever increasing pace. If I could just gain a week to tie up the loose ends, maybe I would feel a little better. My beloved co worker's health has taken a really bad turn. The timing of his illness has made things at work tougher than expected. What I care about more than anything is that he gets better. Everything else can be dealt with. As I kind of ranted last time, trying to train the "new girl" while I was only working part time and my coworker was out has been difficult. I guess I have gone about my job everyday knowing whatever I didn't get to would be there waiting for me the next day. I never took the time to think that maybe someone else would have to come in and take over for me. Because of that mentality I now am finding myself in the difficult position of trying to turn things over. Even an organized person would have difficulty giving over their job to someone else but take into account that I am the only one that understands my organization (or lack there of) and it makes it that much harder. Because of the unexpected turn of events with my fellow inspector I have held on at work longer than expected. But it looks like tomorrow will be it for now. Ready or not!
I think I have said before that there are times that I wish I just didn't care. That is not me though. It is in me to care about everything and everybody. It is a major deal to me if I have done anything to burden anyone else. I don't like to be the cause of pain, discomfort, or unhappiness to anyone. Me having to let go at work right now is eating me up. I feel like I am letting people down and all. I also know that I will be letting my family down if I don't fight to get better. It is becoming a must.
I have had such a hard time with my diet and meds amongst the chaos and I know that is so bad for me. I also know that I have been in so much pain that past few days to a week. Today is one of my worst pain days. If I haven't even started my new meds or had a full dose everyday of the meds I'm already on I don't want to know what I'll be like when I am taking everything. I know all my symptoms mean things are being stirred up and bugs should be dieing but it is not fun at the moment. We are in the middle of trying to move, fix the car, and do Knott's Berry Farm for my daughters birthday. That is crazy enough without being in constant pain and just wanting to sleep for days.
Again I know there is a purpose in this. There is beauty in my pain. As much as I am hating giving up control, when I can truly focus on myself I think some good things are going to happen. I really need to look at this opportunity to look at where God may be leading me. I think I need to start looking outside the box that I've made around my little world and begin to see that God may have much different ideas for me.
The next week or so is going to be very tough. I'm not sure how much I can take or what will come my way. I just know that I have to take each moment one by one. If I can accomplish that I will make it to the next week and the one after that, and the one after that, and slowly the purpose of what I am going through may begin to unfold. This journey is going to be long, painful, wild and full of the unknown. I don't know that I would want it any other way!

Quick Update

So just a quick a update after last nights rant. Disability is lame and still messing around right now. I have no choice but to trust God will get us through the money issue. Had phone appointment with my llnd today. Switching one med out for a different one and adding two more over the next few weeks. Well adding one for sure. The second one she said we had to work on getting insurance to cover otherwise it sounds like we would have to millionaires to afford it. She is not opposed to the IV meds my other doc says I'll need at some point. She wants to make sure we are covering all forms of lyme and the coinfections. Next appointment with other dr on Tuesday. Cardiology for Jenna tomorrow. I'll try to update after Jenna's appointment. Now off the bed after a fairly intense twitching episode. Those wear me out. Now my muscles are sore and some of the nerves in my back are on fire. So some good rest is much needed.

Under Fire

Where to begin...The last few weeks have been completely crazy to say the least. I realize that the devil has opened fire on me and my family hoping to break us down. I believe it was on July 2nd, I submitted my paperwork to the company that handles our disability claims at work. This was after talking with HR about the fact that I was going to be working a reduced schedule because of my battle with Lyme. They advised me to fill out the disability paperwork to get that started. I have a 30 day waiting period before disability benefits would begin being paid. It was just a reduced schedule to begin with, knowing I would be put out full time eventually. I figured this would help get me through my 30 days without suffering a loss of income. I am using any accrued time I have to make up for the hours I am off everyday. Long story short, as of July 30 disability decided I was missing enough work to qualify but now wanted my medical records for the last 2 yrs at least. Their decision is still pending. How nice that they haven't decided and it's now been more 30 days.
On to my next trial (so to speak). First off, my work (being management) has been great. The chiefs I work with in the Fire Department have been so generous and caring with my situation. I am truly blessed in that regard. However,I am working a reduced schedule, we hired a part-time fire inspector to fill in for me while I'm gone so I am in the middle of training her, and the boss is on his annual summer vacation for a few weeks. Might be a little crazy but we will manage, right? Well my beloved co-worker who helps out even more when the boss is gone got severely sick the day after the boss left and has not been back nor do we have a date when he will be back. So now I am trying to do the work of 2 1/2 people on a short schedule and train the new girl. Surprise, surprise, all of the crazy, unusual, and weird requests, complaints, jobs etc...happen to show up when it's just me. In some ways I feel like I work better under pressure but at the same time I am a stressed out mess right now. I've extended how long I am at work partially because of disability and partially because I couldn't just up and leave with the craziness going on at work. Part of me wishes I didn't care so much sometimes, but I know it's the right thing to do. I wouldn't be focused on getting well if I was so worried about how I left things at work. I know I will never be 100% ok with leaving but I can hopefully get close.
Next on my list of rants right now is my increasing herxs. Had a really bad episode of twitching the other day. It lasted quite a while and definitely freaked my parents out. I also had a completely random bout of dizziness and getting sick to my stomach. Here my two secretaries at work take me and the new girl out to lunch before I go. Lunch is going ok and all of sudden I don't feel right. The dizziness and just feeling weird is one thing I can't stand. I basically feel like I am going to collapse and pass out no matter what position I'm in. I could be sitting, standing, or even lying down with my eyes closed and still feel like I am going to fall and pass out. Hate it! Next thing I know I'm excusing myself to the restroom so I don't throw up at the table. I managed to keep lunch down but I couldn't drive and had to go home. Couldn't find a connection between taking my meds or anything, just random.
And to top it all off we had to do this class and compensation study for the City. It was like 12 pages of evaluating my job and duties and I had almost no time to do it. I managed to get it done and hope I did a good job. It could help change some things about my job like pay and everything else if they think I'm not being compensated fairly compared to other people in the area doing my job. The bummer is there is only one of me, doing my job, full time, so it rested completely on me. There are a lot of other people in the City in the same situation about having to do the study all on their own but now was just not a good time for me.
Oh ya, and one more thing. I just my girls in for their annual physicals. I got to discuss with their pediatrician about the Lyme and having them tested. We are going to do that as soon as we can. That's $400 just for the basic Lyme test for both of them. Insurance won't cover it. Then my 4 yr old failed her eye test in her right eye only. Off to the eye dr for her. My 7 yr old was having an irregular heart beat that we have never noticed before. Off to the cardiologist for her. So if Lyme wasn't enough to worry about...yet maybe Lyme is the only thing to worry about as it could be the cause of both of these problems for my girls.
I can just tell that the devil is just on a rampage trying so hard to make me give up. Believe me, there are times I have thought about it. He has messed with work, my family, our plans for moving in with my parents...but we have stayed the course. I realize that because I know I am under fire I may face more bullets in the near future. I also know that I have bullet proof vest on (God) and that any hits I take won't be fatal. I may have some scars but scars are cool right? They tell a story about something I have faced and survived.
I feel so much better just having been able to vent all of this. Just a side note, my emotions are out of control right now. So here I am watching the end of the movie "The Rookie" which I haven's seen. My husband gives me the background and we are at the part where he actually gets to pitch in the major league game and his dad, wife, kids, and high school ball players are there to watch him and I start crying. Seriously, that is so unnecessary. It was good for a laugh though. Nice to know my husband loves me even when I'm a little off. Off to bed, early morning for school registration, update soon after drs appts.

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.