Tougher than I thought

I am having a little bit of a struggle right now with just accepting my current situation and knowing where to go from here. I am not trying to complain. I know we will get through it with God's help. I guess I am just surprised at how much I am struggling being away from work and just knowing where to go next. I have such an overwhelming concern about other people and how my situation is affecting them. I don't like thinking that I am causing any hardship to the Fire Department. I am not saying I am all that great but I do know that me having to leave when I did caused some extra strain at work. I also don't like having to constantly be "bothering" (as I see it) other people about things related to me and this disease. I know that this is one of the reasons we have an HR Department but it gets to me when I am constantly having to ask questions, ask for help, ask them to review something...Now I am at a point where I am running out of protections. Within the next few days work won't be required to do anything for me and technically, if I am too much of a burden they can let me go. I am blessed to work for a great employer and great management and I don't think I will get the axe unexpectedly. I am the type of person though that begins to have guilt because I feel like I am becoming a real burden on them. I want to do what is best for them.

I also had a little relapse of anger and frusteration over this whole issue with disability and all. As I said last time, my dad went to the doctor with me. I have definitely got to see a different side of him. He has expressed more about his feelings during these last few months than I think he ever has. So while we were waiting to see the doctor we were talking about the whole treatment and money and all. My dad says he knows I am worrying about money and that he wants me to not worry and just know that no matter what it takes we will get me better. I know my parents would do anything for me but again I had to bring up the fact that they shouldn't have to go to extreme lengths to help out. I work full time, have health insurance and disability insurance. Yet a large part and the most exspensive part of my treatment won't be covered by my health insurance and I am having a hard time getting disability. I am extremely thankful for the coverage I have had. I am not trying to make it sound like this is as bad as other people have it. it just comes down to the fact that I or my employer are paying for both types of insurance and yet I am not reaping the benefits. What does they are being paid go for. Why should we pay them. I could save that money in the bank and have it to pay for treatment and cover my bills now. It is just very upsetting that even some one who supposedly has the protections out there for situations like this can't really get them. I then feel guilty for taking up people's time, resurces, and money when I feel they could best be used on someone else! End of sermon. I am just really drained over this whole thing right now. As Turko would say, "It Ain't Right!".

From Junk Food Junkie to Health Nut

I think we all know how important diet is when it comes to our health. When things are going good it can be easy to over look. Some people are blessed to not have a sweet tooth. I have a friend like that. She can have a whole jar of Reese's on her desk and not have the desire to eat one. I am not blessed in that way. I don't have "a" sweet tooth. I think I have sweet teeth. I wouldn't eat just one, I would eat the whole jar. I love sweets. If I were to be completely honest, there have been plenty of times in my life where I could say I didn't have more than one fruit or vegetable for an entire week. That is really sad, I know. So why I decided to bring up the diet thing to the doctor again, I don't know. I knew I wouldn't like the answer. What would be the one or two most important things I can do diet wise right now? NO SUGAR! Seriously? It's not drink a gallon of water, it's not eat garlic, it's no sugar! Sugar is toxic and my body doesn't need any more toxins than it already has. I get it. I know it's important. I just know it is hard for me. You are asking a junk food junkie to go to health nut. No sugar, no processed food. The doc says to go back to the foods God gave us to eat...Well that would be no problem if God would just make carrots taste like chocolate. The doctor did say chocolate is okay. Basically if it comes in a box or out of a window, I shouldn't eat. At the donut shop they don't come in a box or out a window so they must be okay right? The doctor told me about a book he wants me to read about diet. Guess I should take his advice. I just have to find the little things I can change to get me closer to a good diet. What can I eat in place of a chocolate chip cookie that still tastes good? I'll let you know when I find out!
Now on to whats new with me and what the doctor had to say. I don't have a whole lot going on in the way of new symptoms. I have noticed a few issues with my vision so I definitely have to go to the eye doctor. These things can be Lyme related or from one of the antibiotics I am taking. I certainly don't want to mess with my vision. I had a few days of being extra tired and a days of some intense bone/joint pain. Nothing significantly different though. I have had some tightness in my chest and been short of breath more recently. I am hoping that doesn't get any worse. Heart and breathing issues scare me the most.
I saw the doctor this morning. My dad went with me. I have seen a totally different side of my dad then I ever had. I love my dad. He has always been a very hard working great guy. I have just seen him become so passionate over this Lyme thing. He has been saying, what ever it takes, we will do it. He is certainly not messing around. I was glad he came with me. He has always worked so hard and so much that it has been hard for him to be involved so I am enjoying the fact that I have him involved in something so important. So back to the doctor's appointment. Nothing has changed with my medication. We are going to stick with the same medications I am currently on. My doctor would like to get a total of 3 months of Mepron on board before we do the IV. Here is the game plan. Do about 2 more months on current program. Next visit we need to do a complete panel of tests to review the condition of my gut. (I'm trying to put it nicely) As I already knew, my gut can be in sever distress with all of the medication I am on. Unfortunately, my insurance doesn't cover the tests. It will be between 200 and 250. It needs to be done though. Then we will be able to give me some other things to get my gut in good shape for the IV.
After discussing the difference between the port in my chest and the PICC line in my arm, it sounds like the port is the best way to go. The way it was explained is basically there is some procedure to insert the port in my chest. Once a week we will access the port with a special needle (God help me, I hate needles) and leave it in for four days. I will take 2 grams of Rocephin twice a day for 4 days and then have 3 days off. I or we will have to mix it up, put it in a bag, and it will go into the port over 20 to 30 minutes two times a day. He didn't say how often the port itself needs to be changed or replaced. He said that will go on for about 6 to 8months. Hopefully that will take care of most of it.
I gave the doctor a copy of the insurance companies "Clinical Policy Bulletin" on Lyme and what they need to have before they will cover any IV. If we are blessed we can get 8 weeks covered. I will take what ever I can for sure. The good news is the doctor thought the price he quoted of about $250 a week included the medication. That was a huge relief because a few other Lyme patients have quoted this medication at about $25 to $35 per dose.That would add about $200 a week. So I guess I know how things are going to proceed for at lest a little bit. Perfect timing right? Two months from now puts us at about Christmas Day. What a Christmas present.
My appeal for disability should be in today. Now it's just a waiting game. If I could just get this approved I can really focus on getting better and can lay out the budget to try and pay for treatment. Once again, I have to remember to trust God on this. In this trial His glory can be made known. I know I have a lot more to say but my mind is going blank and I'm getting really tired. So I guess that's all for now. Thanks for checking in and keeping with my story. Don't hesitate to leave me a comment. I always like to read what you have to say. Until next time...

Just Roll With It

"Just roll with it!" That's what my husband said to me on the ride home after seeing this new doctor. He knows me all to well. He could tell my brain was in a tail spin and that I was trying to sort everything out and plan ahead and, and, and...He reminded me that I had been given a lot of information today and that I just needed to take some time and absorb it. I need to take each day as it comes, regardless of what it holds, and just roll with it. I am thankful that he is there to calm me down when I need it.
So I have to start by saying that Newhall, CA is a long ways away. I can't really complain because my two main doctors are here in San Diego and I may never need to go back to this doctor. Too many Lymies don't have doctors in their area and have to travel far away, sometimes to other states just to be seen. So I am blessed in that regard. But with the out of control LA traffic it took us just over 3 hours to get there this morning. I was 30 minutes late to my appointment but they saw me anyways. It was a stressful start to my morning.
I guess I need to back up and make sure I revisit why I had to go see this doctor. It primarily comes down to the fact that when I was denied my disability, one of their issues was the fact that my Lyme diagnosis did not come from an infectious disease doctor. I did confirm with disability that there was nothing in writing, no law or policy that stated that my diagnosis must come from an infectious disease doctor. They just said that that is typically who would diagnosis this disease. I think I stated in my last blog or two that my doctor was fairly offended by that comment. He is licensed doctor in the State of California yet his diagnosis along my LLND is being ruled as wrong. The insurance companies one doctors opinion trumps my two doctors opinion. Nice! I knew though that I would have to play the game.
I asked my doc for a recommendation to an Infectious Disease Doc and he sent me to a very nice lady in Newhall, CA. I told the doctor that I was basically seeking another opinion on my Lyme Diagnosis. She reviewed my medical history, asked lots of questions, and did a really thorough physical exam. I am not going to lie, I was scared she was going to say she disagreed. I prayed about it but I was scared. I didn't think I could handle it if she said she didn't think I had Lyme. She basically finishes up with her questions, taking notes, and reviewing everything. What she told me next was great news on one hand yet scary and overwhelming on another. She definitely believes that I have Lyme. We didn't discuss how long she thinks I've had it. I guess at this point it doesn't really matter. Then she proceeded to voice her concern over the fact that she believes I have Lyme Carditis. All that basically means is that the Lyme has attacked my heart. Once I was diagnosed, I always felt that my recent heart troubles were caused by Lyme. I think my two other docs agree but neither of them had gone so far as to name it specifically. I almost cried when she told me she believed that this was the cause of my "inappropriate sinus tach". Another big confirmation that I am not crazy. She was also a little surprised that with all of my heart issues the past few years, the cardiologists never sought the cause. They just gave it a name and threw some medication at it. Sadly, this is so common practice in the medial community today. To find a doctor to actually treat you, the whole person, and to find out why things have started going wrong and correct it is rare. Your symptoms are given a name, even if it is a disease of some sort, and you are commonly given medication to make the symptoms go away. How often is the cause of the symptoms treated and if it is, how often are you given the tools, information, and support to make the changes necessary to try and prevent it from happening again. I am beyond blessed to have now found three of those doctors.
Back to the doctors appointment. She said because of her concern over the involvement of my heart IV meds are necessary. However, if were not prepared to try and pay for long term treatment (she knows most insurance won't pay or will only pay for a month)then she said don't bother. 4 weeks was not going to cut it. My husband spoke up and asked how long she thought I would need an IV. Get ready...minimum 6 months, possibly 8 months or longer. Then back to oral meds. Holy Cats! (as my grandpa used to say) She is writing up her findings and recommendations for treatment and sending them to my doctor. Hopefully, this will be a huge hit to the disability people when the get my appeal.
I thanked to doctor a few times and left the office in tears. Good news, yet scary news. The Lyme Carditis thing is a little freaky because it can certainly cause tachycardia but it can also cause heart disease. Essentially, some Lymies have had heart attacks, sudden cardiac arrest, or other things that have led to the discovery of a heart that is very weak and failing. Upon further inspection though, they don't have any of the obvious causes of heart disease. Some require pace makers, others have required heart transplants. Again, I know God's got this worked out and I just need to roll with it but I do have to be realistic. I will admit, if I haven't before that this is one of the things I have worried about with my herxes. You can experience a worse form of symptoms you already have. If you have been blessed with a healthy heart, it is hard to explain what it feels like when out of the blue you get chest pain, can't breath, and your heart feels like it is doing back flips and it's beating at 200 beats a minute. It is one of the scariest things I have ever felt. In my mind, that can't get worse. I am going to chose to not let my mind go there though. I could totally work myself up over the what ifs of that situation.
We made it back home safe and sound, for witch I am thankful. (As a side note, on the way up, we did get see the crazy band that shut down the 101 freeway to perform a concert on the top of their van before the cops showed up. Not cool to tie up that much traffic but definitely a site)Get home and to my surprise, my medical records that I should have gotten a week or more ago showed up. I am glad that they came as quickly as they did after I was told they had no idea when they would show up. I would have loved to have had them at my appointment but things worked out anyways. The interesting thing about my medical records was that there were doctors notes that I thought were of significance that the doctors never mentioned to me. One note was from one of my cardiologists. They were looking at putting me on beta blockers for my fast heart rate. However, the note said there was some concern as to weather I really had asthma and if so they would put me on a calcium channel blocker instead. Feel free to mention that to me, and to follow up and confirm the diagnosis of asthma. I was on Advair and a rescue inhaler although I wasn't convinced it was asthma. But why didn't they follow up on that? The second note was from the neurologist. I saw him after my first crazy episode of my arm muscles being in excruciating pain for no reason and me losing all the strength in my arms and having similar episodes continue. He did a MRI of my head to make sure I didn't have MS or anything else. He told me in the office though that he was sure the MRI would be negative and it was all anxiety. His notes stated although my symptoms were consistent with anxiety, due to the number of points on my body that were sore and tender he believed I had fibromyalgia. Hello, thanks for telling me. So now I have 3 doctors that agree I have Lyme, and two that say I have fibromyalgia, yet disability says it's all crap. Okay!
One last rant before I end with some advice. The cover letter that came with my medical records from disability stated that they were responding to my Long Term Disability claim and giving me a copy of the City's LTD policy. First, I didn't apply for LTD, I applied for STD. To my knowledge, I get STD first and then it transitions into LTD. Second, I never requested a copy of the policy. Third, they didn't even put a copy of the policy in there. This is not the first time something like this has happened. Am I wrong to be concerned with the fact that the little things get screwed up and yet they are deciding my financial future? Very scary.
So to end, here is my advice. Believe I am still learning and need to remember to follow my own advice but here it goes! Please, please, please take charge of your health. I don't just mean trying to make healthy choices, but following your gut. Seek second opinions for diagnosis, treatment, procedures. Research and learn as much as you can. Educate yourself. If your doctor dismisses your feelings and concerns go someplace else. The doctors may have the education, training and experience to treat people and their ailments that you and I don't have. But they do not know your body as well as you do. They are human and they will make mistakes. Lastly, we live in a fallen world, and as sad as it is to say, money talks. Some people will put your well being aside for the love of money. Fight for what you know is right. It took me a long time to get where I am today and I know I have a long way to go. But not giving up and not giving may have just saved my life!

Putting It All on the Line

I decided to take a risk today and put myself and this disease out there for everybody to see. For someone who has always been self conscious, especially of how they look, this is a pretty big deal. I am learning a lot through this trial in my life. I want good things to come from this. I am very limited in what I can do right now but if I didn't do anything then I think I would give up the fight.
I have shared through out my blog some of the effects that Lyme can have on you and some of the symptoms I suffer from. I decided today to video one of my "twitching" episodes and post it so people could see first hand what this disease can do to you. A lot of the pain and discomfort of Lyme is not visible. This is one of the few things that would give someone an indication that something is wrong. The episode I posted was fairly mild compared to some of the other episodes I've had. When I say twitching, I know a lot of people think it is the same as muscle spasms. It's not, but I do have those too. As of right now, the twitching doesn't really hurt. It does take a lot out of me though. It can come on any time, any where and with little or no warning. I may go a week without any twitching and then I might have episodes a couple of days in a row. I think my longest episode has lasted close to an hour. It usually seems to come on when my muscles feel weak. I normally get the feeling in my calves or my forearms. It can be a weak feeling or a creepy crawly feeling (which is the worst). Soon after I begin to feel that way the twitching usually starts. Sometimes it is brought on when I get cold. It is a nerve related thing so I have had luck stopping it by taking a hot epsom salt bath or taking extra magnesium pills.
As I said, getting cold can sometimes start me twitching. Temperature control is something I sturggle with. For a long time I had cold hands and extremely cold feet. I get cold easily. It got to the point that the only way I could warm up was to take a hot bath and I mean super hot. Sometimes it feels like I can't make the shower or bath hot enough. I have found out recently that I have a low body temperature. Almost always when my temperautre is taken it is 97.6. I found out that I can be running a low grade fever at 98.6 or 99 then. Makes sense I guess. I haven't gotten into the habit of taking my temperature twice a day, although I should. The issue with getting cold has turned painful more recently. It can be hard to stay warm in colder weather. Things like holding something cold in my hand can become very painful. The freezer or dairy section of the grocery store can be torture. My finger tips can hurt really bad and become numb.
I know I have talked about the fatigue and being tired. Before I was diagnosed and took off from work there were days when it took everything I had to not fall asleep at work. It took all my strength to just walk. I knew that just wasn't right. Now at least when I am that tired I can sleep. Lymies are supposed to a minimum of a 1 hr. nap before they get tired in the afternoon. Most days I am sleeping 2 to 3 hours and some days I am sleeping 5 or 6. I think the fatigue gets aggravating. If you are having a good day otherwise it is hard to remember how sick you are and it can be easy to over do it.
It is hard to say what I think has been the most painful part of this disease. The joint and bone pain definitely has made me think about everyone who has arthritis. Some days it is really bad. It is usually in my wrists, fingers, and toes. The bone pain can be anywhere but is usually in my forearms. It feels like someone has placed my arms in a vice and just keeps tightening it. The nerve pain can be is different and something I have had much longer than the joint pain. A few years ago I started getting a burning sensation down my one shoulder blade. Then it went to the other. Then I started getting a deep stabbing chest pain on the left side of my chest. Sometmes the pain would pierce me all the way through to my shoulder blade. It always worried me because it was on the left side of my chest and I started having heart trouble. I'm glad now that I know what it is from. The nerve pain can be like pins and needles sometimes or just this wierd feeling like my skin is crawling. When that skin crawling thing happens you can't touch me. The slighest touch becomes the most horrible thing in the world.
The muscle aches can get bad too. When the muscles ache and feel weak, whick happens mostly in my arms, I just want to cut my arms off. I remember coming home from work a few times and just crying and asking my husband to just chop my arms off at the shoulders.
I know I have covered a lot before about how this disease makes me feel. So sorry if I have bored you by repeating myself. I am no where near being done with all of the other things this disease has done to me but I think I've said enough for tonight.
So look at my video if you want. You can also type in lyme or herxing on You Tube and see all sorts of similiar videos about this disease. That is where I got the idea from. It brings a new perspective to what people are really going through. Anyways...you can laugh. My kids do. I am not going to say it doesn't hurt my feelings some days when my kids laugh at me but I know it is their way of dealing. A lot of times my twitching ivolves me giving an involuntary thumbs up. One time it made me repeatedly put my fist in the air. My husband just stared at me and I just said Rock On. We laughed. My husband laughs too. He is always so laid back about eveything but he finally admitted the twitching freaks him out and he wants me to go take my pills or get in the bath to make it stop. So I know his laughing is because he is nervous about it. When it is really bad it can take my breath away and I can't really talk. I struggle to get words out so I don't usually talk. Well I guess I got side tracked as usual. So good night for now and thanks for checking in on me.

Flaws in the System

I want to start by saying that today was another amazing day due to some angels in my life. I received an unexpected financial contribution that will ease the burden for a few weeks. That will hopefully allow me enough time to get things squared away at work. Then I will have some time to fully focus on my disability appeal. It is very hard to focus on getting better when you have financial issues to deal with. God has certainly used these past few weeks to show me whats really important. I really wan't sure that life could go on without Starbucks but somehow it has. I'm just kidding, kind of. I mean when things were looking very bad, all of sudden every little cent became crucial. We've stopped most of our eating out which is good for our financial and physical health. I have also stopped most of my trips to starbucks which has the same benefits as not eating out. We have just really reevaluated where our money has been going. It is a new way of living, but really we are not in NEED of anything. I guess we have never really been in need. We have always been in WANT! Tough to learn but I appreciate the lesson. God has really begun to work some miracles in this difficult time and as I said I have been truly blessed. I know it will be crazy when this whole thing is over and done with and I can look back and what we went through and how God pulled us through. Until then I will continue to wait in anticipation of what He is going to do next. It's times like this I am so thankful for my faith. I think I would have thrown in the towel a while ago if I didn't have hope that only comes from God. All of this was really important for me to say although it doesn't really fall under my title of Flaws in the System. Thats where I am going next.
In the midst of all my "happy" tears and joy today, I was still battling a lot of frusteration. I am truly thankful and blessed that I have some people who have stepped up to help me and my family in our time of need. The fact of the matter is though that I work for and contribute to systems that are supposed to take care of me in my time of need. Why should my employer pay into an insurance company to provide disability insurance for it's employees in times of need when they can deny it or at least put you through a mild form of hell to get what they are being paid to give you? I have done okay with health insurance so far but I already know some of what they do and don't cover. So again why should my employer or anybody pay for health insurance when they can turn around and end up dictating your care. As much as I am grateful for the help I have received I am almost angry that a family with two full time working parents with benefits and everything should have to be in this position. I feel undeserving on some levels and on others I just feel like there are other people that this help could go towards. What about the single mom working a couple of jobs at minimum wage who can't afford health insurance? or the family at my kids school who stepped up to the plate and took in 3 or 4 neices and nephews after their parents were killed in a car crash? I guess I am just really begining to see how messed up things have gotten in this world. On the flip side you have some people that don't seem to work for anything, are constantly in trouble with the law, drugs, etc...and they seem to live fine off of food stamps and other benefits. (Please don't take that the wrong way. Some people are in a truly difficult circumstance and need welfare and some of those other benefits but there are plenty who get it and shouldn't)
The other thing that got me fired up was talking to disability again today. They offered to send me a copy of all of the medical records they received so I could go over them and see if anything was missing. That only seemed fair as I was going to appeal their denial of my claim. I was told it would take them until probably the end of the week to get them copied and send them out. That would have been September 24th. I had not received the records so I called The Standard to get an idea of when they were mailed out. Oh, well they were some absences or something in the copy department so they are extremely backed up. I don't know when your records will be done and mailed out. I reminded the claim rep that I did have a deadline for filing my appeal. She said, well you have six months. I replied something about technically six months to file but financially I didn't have a month from the start of this thing. So anyways...just another piece of the puzzle.
I was given some words of encouragement about not giving up the fight on this claim. I won't. It will be hard but I am not going to let them win.

Nothing New

I guess over the past few days I don't really have much to report. Nothing really new has happened. I am starting to get a little "down" which I should expect. Feeling bad can really take it's toll on you. I am thankful I don't feel worse than I do but on the flip side of things it if very frustrating to not be able to live your normal life...work,play etc, and yet not be sick enough to be in the hospital. It is really hard to tell with this disease if you are making any progress. I am certainly not at a point where I am feeling better. This past week or so I haven't had much twitching. I have however had lots of joint pain. It is going on almost two weeks of joint and bone pain everyday. I hurt really bad in the mornings. I can't lay on my side without waking up to my arms being numb and all my joints hurting. This morning was one of the worst mornings. Both shoulders, elbows, wrists hurt. It's weird because because even my toes hurt. The joints in my toes can really just starting aching. I have also been really tired almost everyday. I have gone from just an hour nap to usually 3 and sometimes almost all day. It does get old to just be that tired and worn out. It's like I get one outing a day and then I'm done. Just getting my kids to and from school is hard but if I go to the grocery store or something then I am done for the day. This is the longest run of symptoms I've had, at least pain wise. I have been tired (not this tired, but tired) everyday since I don't know when but having pain everyday for two weeks is new. The doctor told me last week that he still feels like I will end up with IV meds but he is hoping to kill as much of the bacteria and stuff as he can so when I go on the IV the meds my herxing won't be so severe. It is just hard to say when we think we will have killed enough. I've got my charts redone to track my meds and my symptoms. Hopefully I'll get back on track with charting everything so I can see when maybe things are calming down.
I am still praying and waiting to figure out my finances. I am holding out hope to get some money from work but I can't say it's a guarantee. I am waiting on a doctors note to give to HR. I completely blew it at my last doctors appt because I forgot to ask for the letter. I guess that's part of my brain fog. Even if I get help from work that is only temporary and I still have to pray that my appeal will get overturned. I am in a tough spot because my specialist doesn't take insurance. She is about $125 a month for my appointment alone. All my supplements from her are another couple hundred a month. My husband asked if I had to have both doctors. I guess technically I don't have to have both docs but I feel better having two docs look at my treatment. I just am not ready to abandon my specialist. I feel very fortune ate to have two doctors that are willing to treat me and work together then be fighting to find one like so many Lymies. I am praying this infectious disease doctor I have to go see in LA come to the same conclusion and supports me in this fight.
Nothing exciting I know but I was thinking I need to update more even if it's really brief so I have a better documentary of this journey when I'm done. I haven't journaled in forever which I need to do again also. Some things I'm just not ready to put out there for the whole world to see.
Thanks though for those of you who are following my journey or just checking in on me once and a while. I appreciate all of the support I have been getting from old and new friends. It means the world to me to hear that someone just wants to know how I am doing and let me know that they are there if I need anything. I am blessed with some very sweet people in my life.