Tuesday, September 28, 2010


How crazy the last week or so has been. I have been too overwhelmed to share anything before today. To continue where I left off I'll give you the details of the denial letter I got from The Standard. Let me start by saying I was floored by what the letter had to say. I will admit that they did a somewhat decent job of recapping two years of medical history. There were a couple of things they left out but overall it wasn't bad. The conclusion to all of the medical information they had is really where they went completely wrong. They basically said that there was "insufficient medical documentation" to support the fact that I had Lyme, or anything else, that would keep me from doing my job. They basically stated that all of my issues (symptoms) are somatic. That basically means they are all in my head or that they may be real but they are all self induced. Are you kidding me? That is very hard to hear after you were already being told that because the doctors couldn't figure out what was wrong with you. They said they don't believe I have Lyme regardless of a positive blood test. (They don't like the lab I used) They don't believe I have Lyme after two different doctors said I do. They said I don't have the typical physical findings of Lyme. So first off, Lyme is a "clinical" diagnosis. Blood work alone is not supposed to be used to diagnose Lyme. Many people have negative blood work. Positive blood work could indicate a previous infection. My history is I have a known tick bite, there has been no other known cause for my deteriorating health, I had a positive blood test, and I am reacting to the mediation used to treat Lyme. I have almost all of the symptoms of Lyme. Physical findings are very hard with this disease. There is not a lot of physical evidence that supports muscle pain, joint pain, fatigue, memory issues, twitching, etc...You can physically see me sleeping a lot during the day, you can physically see me twitching, you can physically follow me into the bathroom and watch me get sick but you can't run a test that supports all of my symptoms. The Standard took issue with the fact that my diagnosing doctors for Lyme were a Lyme Literate Naturopathic Doctor and General Practice Medical Doctor. They said that it should be an Infectious Disease MD or a Rhuematologist. They didn't agree with the Fibromyalgia diagnosis because it was suggested by a Neurologist and supported or diagnosed by my GP and not a Rhuematologist. One of the first things I did when I got the letter was to call the claim rep and ask some questions. First I asked for some specific or detailed information on what would be considered "sufficient medical documentation"? The answer was there isn't any. It is individual to each case. So you can call what I have "insufficient" but you can't tell me what "sufficient" is. Okay. Now onto the diagnosing doctors. I asked for the policy or something in writing that stated I had to be diagnosed by a specific specialist. I was told there is nothing. So you tried to tell me you thought the diagnosing doctors, who are licensed mind you, were not qualified to make a diagnosis but there is nothing that states who or what kind of doctor must make a diagnosis. Doesn't seem like they have a lot to go on. As my doctor put it this morning, this is essentially bad faith on the part of The Standard. They have just said that a couple of licensed physicians with thriving medical practices are not qualified to diagnosis people. He believes I need a lawyer. I will continue on with my appeal. Nothing is being changed in my treatment. My doc did say he still believes I will end up on IV meds at some point but for now we will continue with my current treatment. To help my disability case he is sending me up to the L.A. area to see an Infectious Disease doctor. Hopefully it won't take much for her to support my Lyme diagnosis. Unfortunately I can't get in to see her until the 12th of October. Oh well.
So after all the frustrating news let me get to the WOW! I ended on a good note last time, looking toward the future with some excitement over how God would turn this situation around. I am not going to say it has been easy to stay hopeful. I have had some difficult moments and there has been this constant small worry in the back of my mind that has begun to take it's toll on me. I have continually tried to remind myself that God would come through. I had to have to faith. I have done the small things I can do but the timing is all God's and He may have a different plan. While I was in the doctors this morning I got a message from one of the guys I work with. I called him back and got some news that almost brought me to my knees. He had been informed of my current situation and after discussing it with the other guys on the department they were prepared to help however they could. He took the initiative to start talks with management about what they can do to help me and my family and he just wanted to try and put my mind at ease. They were doing everything they could. Of course I cried. I knew I worked for a great Fire Department but this goes above and beyond what I could have ever imagined. Fire Departments are typically extended family. My past experience has been that to be part of the family you have to be a firefighter and work in the suppression/medical side of things. I work in prevention and my interaction with the guys on the floor is different then the interaction they have with each other. To say that I am blessed to have the coworkers I do is an understatement. The support of the "guys" and their families is more than I could have asked for. I am confident going into the future that things are going to be okay. God has placed some amazing angels in my life and I am forever grateful.
Now I have got to find a special way to say "Thank You"!

Sunday, September 19, 2010

Where Do I Go From Here

I am not sure why I am not better prepared for the tough times. I should have guessed since I said in my last post that I was going to continue to share the truth of my Lyme battle but that I really wanted to be encouraging to others and show much God can do in these tough times that I was headed for another test. As you probably well know by now I have been impatiently waiting to hear back from disability. My biggest fear became a reality when human resources called me Thursday and told me that my short term disability claim was denied. The tears had started before I was even off the phone and as I walked in the house and hung up I pretty much collapsed into my husbands arms. I can't remember the last time I cried that hard. My mind has been kind of numb since that phone call. The amount of stress this has brought on is just crazy. I haven't even been able to figure out what my next move should be. I know I have to file an appeal but since they took 80 days to deny this claim, who knows how long they will take to make a decision on the appeal. My biggest concern is obviously a financial one. I had used up so much paid time off leading up to this point just trying to figure out what was wrong with me that since the diagnosis and reducing my schedule to stopping work completely I have used it all. I have gone through one whole pay period without a paycheck and will go through the second one this week. My family can not live without my income. Believe me, if we could I would not work full time.
This has become one of those situations in which I am totally lost. I believe in God. I believe that God has the power to get me through this situation. I wish I was at a point in my faith that I was singing for joy during this time. I will be honest. I have not been. I don't know where to draw the line of what I am supposed to do to take care of my family and just saying, "Here God, you deal with this." I feel like I need to do my part to try and get a temporary fix the City may have for me, and proceed with the appeal. Maybe that is all I am supposed to do. Not spending money on anything but necessities and trusting God to deliver the finances to cover our living expenses may be exactly what I am supposed be doing. I will admit this is going to try and test my faith more than it has ever been tested.
Am I supposed to be spending hours researching how to fight back and talking with attorneys and such or just do what I can without going crazy and let God handle it? If God would only send me a text message or something...
Back to the denial for a moment. So I haven't gotten the actual denial letter yet but was told by the claim rep that their physicians didn't feel there was enough medical evidence to support me not working right now. I am just blown away for so many reasons. First off, this was just a short term claim for now. I wasn't claiming I would never be going back to work. This would give me a few months to go through treatment and go from there. Second, they have 2 yrs. worth of medical records that to me have plenty of supporting evidence as to why I shouldn't be working right now. I guess in the insurance companies mind, they want two years worth of records but are really only looking at the last few months since the Lyme diagnosis since that is why I can't be at work...because of the Lyme. What they are failing to recognize is that the ADD, anxiety, depression, and inappropriate sinus tachycardia diagnosis that I have gotten within the last 2 to 3 years are most likely all Lyme disease symptoms. So do they not count because they were essentially mis-diagnosed the whole time. Now add the fact that I am on 4 high dose antibiotics, sick to my stomach a lot, tired everyday (some days all I do is sleep), have swollen lymph nodes, sore throat, joint pain, muscle pain, twitching to the point I can't do much else and it makes it hard to talk, dizziness, trouble concentrating and some memory issues but I should be able to do my job as a Fire Inspector no problem. It shouldn't be a problem when I am up on a 12 ft. ladder and crawling around the attic of a new church when I start twitching. Being tired on a normal day, and having some difficulties concentrating and with memory shouldn't affect me having to work a 24 hour shift in our Emergency Operations Center on a big fire. I should be able to review plans for a fire protection system no problem even if I can't concentrate. I should be able to knock out my school inspections for a few hours at a time despite being sick to my stomach and having intense joint pain. Seriously, how does disability expect me to not be a liability to the City when I'm like this. Does having to move in with my parents not mean anything. It's not fair that to get this claim approved I may have to go through the IV earlier than expected. What if these meds really started to work and I could avoid an IV? Why should they be dictating my treatment? I'll make sure and send them all my latest blood work with the low CD 57 I got a few weeks back and the newest round that shows another marker for whats going on double what it should be. I'll also make sure and send them a few pictures of all my meds I'm on and good herx video so they can see me at my worst for themselves.
That is my rant for now. I thought I was having trouble with the Lyme diagnosis, but this tops it. I've accepted the fact that I am sick. I will not accept the fact that some third party is going to tell me there is not enough wrong with me to take a break from work and focus on getting better. I have a lot of praying to do about this situation and ask if you're a believer that you add this to your list of prayers. There is nothing I can do to turn this situation around. I can fill out the papers and do what is asked of me but the rest is in God's hands. God is really gonna stretch my faith because I don't have a choice. How awesome it will be when I can be blogging about the unbelievable way things turned around. God's power, mercy, grace, and love can certainly be glorified in this situation. I guess after working through my thoughts tonight I can say I am getting excited to see how God is going to turn this situation around. Glad I'm ending on a happy note. Good night for now. Lots more to come in the following days I'm sure.

Wednesday, September 15, 2010

Trying to Find My Purpose

As I have continued on this roller coaster in my life over the last few days I have really begun to think about what my purpose is. I have always known in the back of my mind that there is a purpose in what I am going through right now. I think you always know that but it is usually over shadowed by the difficulty or joy of what you are going through. That has certainly been the case with this. My anger, frustration, sadness, and physical symptoms have largely over shadowed my knowledge that God must have a reason I am facing this. What that purpose is I don't quite know yet.
I realize I have been able to be a source of information to others who have been newly diagnosed. I also think that I have been able to be a source of encouragement to others having a difficult time. (At least I hope) What has happened over the last few days though, has really caused me to step back and take a look at my situation and how I am choosing to handle it.
I feel that it is important for me to document this journey and be honest as I go. There are going to be times that things are extremely tough and flat out suck. I also have begun to realize that if I take the time to jump into God's word and really search out what the Bible has to say that not only will I benefit but I may be able to help others. A lot of this has come about after following the journey a precious little girl who is 6 or 7 years old and fighting cancer for the second time in her life. Her dad is a pastor and I as I have heard some of what he has had to say while he is watching his little girl suffer I have just had such a revelation about God and His ways. In my brokenness, He can be glorified. His power and strength can be made known in my weakness. So while I'm moving along day by day, I am hoping to uplift and inspire, I am hoping that other people that I cross paths with can be blessed by what God is doing in my life through this situation. I want to be able to say with conviction that I am closer to God and can with all that I am praise Him despite my circumstances.
This journey is proving to be the most difficult and trying thing I have ever gone through in my life. I am beginning though to look toward the fact something great will come from this. I am beginning to really feel blessed that God has chosen to use me to accomplish whatever His plans. Thanks for stopping by and sharing in this journey. I look forward to what the future holds and would love to hear from you.

Monday, September 13, 2010

Back on the Roller Coaster

Well in the last few days I feel like I have jumped back on the roller coaster I was on before. It is both a physical and emotional ride. I know the physical part is always going to be up and down until I rid of this disease. I guess I was just hoping to come to terms with the fact that I even have this disease. To be perfectly honest, I haven't. There are still many days that I feel like this has to be some horrible nightmare. I didn't really get this diagnosis did I? Am I really fighting to get disability benefits? Is this really only the begining of a very long battle? It just seems totally unreal sometimes. I think I have been able to distract myself over the past few weeks with the move and all. I just pushed through feeling bad as best I could to get the "move out" done and get the kids back in school. So in a way I could push Lyme to the back of my mind. Now that I am trying to get settled and I am facing a lot of time alone with myself and this disease it is starting to hit me again.
I have been trying to keep up on all the current information on Lyme and with my new Lyme friends. I have to admit I am a little freaked out about what may come. My bad days are no fun but the reality of what I will probably face as we get to the bulk of the bugs is downright scary. I don't know that I even have a symptom I am scared of the most. The naseau and dizziness are really hard to handle. But the shortness of breath and the racing heart can be really scary. I have seriously wondered how much more my heart can handle during previous episodes. My heart has jumped to over 200 beats a minute for no reason. It is very easy to think that you are going to die in that moment.
I know a lot of people would say that I shouldn't read so much. I am definitely learning how to decipher what I read, especially on-line. On the flip side when I am experiencing something new I more prepared to handle it. I remember when some of my twitching started. My mom had a really hard time. My husband had a hard time. I didn't like it but I knew it was totally normal and I had no reason to panic.
I am a very emotional person. More so now then ever, just ask my husband. So I am regularly in tears when I read what other people, regardless if their illness are going through. Just earlier I was reading about a Pastors' little girl who is fighting cancer for I believe a second time. I can't imagine going through what that family is going through. Then I read about a fellow Lymie who has been confined to bed for the last 3 years because of her symptoms and there is not really any end in site. So heartbreaking.
I guess I'll end for now. I'm still really tired and have a lot left to do. Thanks for checking in and for all of the support as I continue in this journey.

Tuesday, September 7, 2010

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.