Tuesday, November 30, 2010

The Meatloaf Made Me Cry

I hope everyone had a wonderful Thanksgiving. I definitely did. Wonderful food, wonderful friends, and so much to be thankful for. Although this has probably been the toughest year of my life it has also been amazing. I finally know what I am up against to some degree. Even though the Lyme can be unpredictable and I don't know for sure how sick I am or how long it will before I get better I have a name. That alone gives me hope. I have been blessed beyond measure in these past few months. God has used people in my life to help my family get by when I was sure our world was going come crashing down. You know the saying that "Everything happens for a reason"? It is interesting to think about the people that God has used in my life recently and how they even got here. It is really cool to think about if a whole bunch of decisions in my life led me to this very moment because God was planning all along how He was going to handle this. If that makes any sense. So anyways...I am just very thankful!

Nothing much changed over the holidays. I probably over did it a little bit. I mean I went a few days without a nap and that can do me in. I'm still in pain, mainly joint pain or bone pain. I have muscle spasms most days, usually in my eye or my arm. At least they aren't painful. I haven't had very much twitching which is good. I am super emotional and can cry at almost anything. I am also a little short tempered and still tired.

I realize I may have said some of this before. I had gone a while without being very temperature sensitive but it has come back. My feet are cold almost 24-7. I have to take a hot shower or bath to try and warm up, sometimes twice a day. The temperature thing can be very painful. I remember over the past few years times where the tips of my fingers would get so could they would start to go numb. They never got to where I couldn't feel them but just to the point that they were super painful to touch. I always thought that was weird. It's not like I had been out in the snow without gloves or anything. Now at least I know why. I have never asked but I am guessing it is part of the nerve stuff. Being in the freezer or dairy section of the grocery store can be painful. It is very frustrating. This is what brought me to tears while I was making dinner last night. I decided to make turkey meatloaf. I realized as I was getting everything out that this was going to be painful. Who ever thought making meatloaf could be painful? I had been here before. I knew what was probably going to happen and I was right. I put everything in the bowel and went to mix it up with my hands and sure enough with in a matter of seconds my fingers were in so much pain. I could only mix everything up for about 5 seconds before I had to run my hands under hot water. The pain made me start to cry. How silly that I was crying over making meatloaf but it hurt so bad and I was frustrated so the tears just happened. I did successfully make dinner and the family didn't even know how bad it hurt. I realize you may be reading this and saying why didn't you ask for help? It just feels like so much has been taken away from me already that I try to hold on what few things I have left. Making dinner is one of them.

I'm looking forward to Christmas and trying not to worry about the disability issue. I will get my answer when I am supposed to and worrying about what it is going to be will not change the outcome. I am trying not to think about the port and new medicine and just take each day as it comes. I have been reading a lot of my fellow Lymies blogs. My heart breaks for them every time I read about their struggles. Each one of them and their families are going through so much. I am determined to do my part to help educate people about this disease and do what I can to help others in need. I guess that is all for now. Thanks for stopping by and checking in.

Monday, November 22, 2010


I couldn't figure out what to call this post if you couldn't tell. My brain is not at it's full working potential suprise, suprise. This may just be a quick update or I may get sidetracked and go on forever. I never know. Well anyways, I want and saw the doc today. We discussed a lot of the same things I discussed with my LLND last week. I also needed to clarify for myself what a herx really was. I just wanted to make sure that I was accurately relaying to my doctors what was going on. So my average day to day feeling is just how I feel with Lyme. The days that I get slammed with pain or extreme fatigue or twitching, those are herxes. It does make sense that I seem to have more herxes about every 4 weeks. If I understand correctly, about every 4 to 6 six weeks the Lyme bacteria spread or hatch. During that time my meds are killing those bacteria which then in turn causes them to release toxins. Thats why I herx. Once I got that straight, we discussed the use of Levaquin just in case I have Bartonella. The doc agrees. He just said to make sure that if I started have tendonitis type pain or joint pain (I'm guessing it is different than the joint pain I already have)that I stop taking the medication. I guess all I can do is try it. I asked how do we really know if what we are doing is working? He said it really has to do with how I feel. I don't feel any better yet for sure. He said we may see an increase in my CD-57 numbers also. We decided to do a bunch of blood work (7 viles). I know we did another CD-57 and a heavy metal screening test. The heavy metal screening I guess will give us an idea if we should do the other testing for heavy metal. Then we discussed the chest port. So it is an out patient procedure I will have done at the hospital. We are shooting for the first or second week in Janurary to have it put in. The medication may have come down in price a little it looks like $20 a day or $80 a week since I only use it 4 days a week. I still do not know how much the rest of the supplies cost but I am hoping to come in under that original $250 a week number. The doctors best guess on procedure price was $4000. I have called the hospital twice and left messages and still gotten no return phone call. One of the calls was last week. I figure they would want to provide you this information so you can make your plan ahead of time to pay for everything. I did talk to the insurance today and it sounds like I should have no problem getting coverage for the port placement. If the $4000 is right, we will pay about $1300. At least I feel like we are getting somewhere. The doctor did offer to refer me to some good docs in Mexico that will do it for half the price. No offense intended but I am not comfortable with that for a few reasons. I guess that covers the doc appt for the most part. I am interested to see what my blood work says. So I go back next month for a followup and the blood work needed for the port.
Nothing new with disability. My appeal is being reviewed by an infectious disease doctor. I won't call to check up until next week. I am sure they are off Thursday and Friday like most people so that will slow things up a few days. I am trying to not worry about it all but as I have said a hundred times, it is hard. I know God has provided so far and I am sure He will continue to do so. It is kind of funny that we got hit with an unexpected bill (very long story) and we are just to the point where things the money is really starting to get short. Just when I got down about things this weekend I got a message from a friend who has something up their sleeve. We haven't been able to connect yet so I don't know what's up. Big or small I am excited and reminded that once again we are not alone in this. I will admit I am really working on trying to change my approach to this holiday season and my perspective on things. Over the last year or two I have tried to not spend so much on the gifts. I know that is not what the holiday is supposed to be about. I realize now how much I let it dominate the holidays. I enjoy giving gifts to other people. I want to be in line at the Starbucks drive through and be buying coffee for the people behind me. I want to try and make a "black friday" shopping trip. Those are some of the things I am having to give up this year. I know we are going to be blessed with an amazing Christmas and that we have so much to be thankful for this Thanksgiving...it is just going to take a little getting used to. This year more than any so far, it will be about the Birth of Jesus and the blessings of friends and family and our time together. That is what matters most. We can have a wonderful time without all of the stuff and spending all of the money. I guess it is time for some new traditions! I hope you all have a wonderful Thanksgiving. I especially pray all of my fellow Lymies feel good enough to enjoy some great food and fellowship with those they love this week.

Thursday, November 18, 2010

Desperate Measures

Desperate measures. That's what I feel like I went to today. If only I would have known it would cause me have one of my worst days so far. So I guess I should tell you what this desperate measure was. I found out about a doc that owns the Hansa Wellness Center in Wisconsin. It sounds like an incredible place that uses all sorts of therapies to treat all sorts of issues, including Lyme. I was reading an article on detox yesterday and Dr. David's recommendation for a detox bath. It was certainly different than anything I had heard of before and I decided to give it a try. Here is a quick run down of the ingredients- goats milk, raw sugar, sea salt, two egg yolks, horsetail herb powder, and lemon. You mix it all with warm water and soak for 20 minutes. You don't rinse off just towel dry. He recommends doing it about once a week and doing it at night so you can sleep and let your body work on some repair. He also said it's really helpful for those with low body temperature, which would be me. My husband thought I was nuts. I thought it definitely sounds a little weird but one of the main issues with Lyme is not being able to remove all of the toxins from the dying bacteria quickly enough. So I dropped the kids off at school, got the ingredients together, and decided to do it first thing. A few minutes into the bath I started to feel a little sore. I have been feeling that way the last day or two so I wasn't necessarily surprised. After 20 minutes, I got out and felt like I could just go to sleep. I decided to eat something,take my morning meds and then lay down. I definitely started hurting more in both my muscles and joints/bones. I fell asleep for about an hour and half and work up super nauseous. It was about 20 to 30 minutes of trying not get sick. I didn't. I wasn't feeling sick to my stomach any more but still had the pain. I managed to just make it my daughters Thanksgiving celebration at school but felt bad and wanted to come right home. I have slept most of the rest of the day and have continued to be in probably the worst pain since I started my treatment. I guess the bath really stirred something up which is good but it sucks that it is has to feel so bad.

I guess a quick update from the doc is in order then I am done for the night. I had a phone appointment with my LLND yesterday. We discussed that there is nothing really new going on and the fact that I don't feel any better. She said she feels like I am sill on a good course of meds and supplements. I told her about my visit to the infectious disease doc and what she said, and the fact that in the next month or so we should be putting in the chest port and starting a minimum of a 6 month course of IV Rocephin. She said that sounded okay but that she was thinking maybe we are missing something because I haven't seen any improvement. So she would like me to do a 30 day course of Levaquin before the IV. The Levaquin could help if I have a co-infection of Bartonella that didn't show up on the blood work. The scary thing about Levaquin is that it can cause tendon damage. For some people they can end up with bad tendinitis and if you don't take care of it the tendon(s) can rupture. That sounds fun. I realize she wouldn't recommend it if the benefits didn't out way the risks but wow, that is a little crazy. She told me to run it by my pcp doc on my appointment next week and make sure he is on board. We also discussed the possibility of heavy metal toxicity. I was reading, from Dr. David again, that one of the major causes of low body temperature is heavy metal toxicity. (Mainly platinum and I forgot the other one) Either way, I knew we should look into this at some point anyway and the doc agreed. She said at some point we should do a test. We can do it whenever but it didn't have to be done before the IV. I guess we will wait until I figure out the money situation and go from there. We didn't discuss how much it would cost but I am sure it is not totally cheap. That was about all from the LLND. I will see my pcp this coming week and will know much more then.

In closing I did start reading "Primal Blueprint" that my pcp wanted me to read. It is a little much for me but in general the basic eating principals involve-lots protein, fruits and veggies. The author says fat content doesn't matter and a structured eating schedule doesn't matter. All of investigation and research have taught him that insulin is the major issue with body fat, weight loss, and all sort of health issues. He says fat and cholesterol aren't bad like we think. Even whole grains aren't great for us and cause problems and basically in my own words sugar is equal to the devil. I am going to give it a try as best I can. I am going to try and cut out a lot of the carbs from everything other than fruits and veggies. We will see if I feel any different. On another note, one of the meds I am on my LLND said was really expensive and if my insurance didn't cover it to forget taking it. I have been blessed that I have gotten 3 months of it without question. I found out the retail price the other day and oh my gosh...it is over $1700 a month. So crazy. So as I said, very blessed to have gotten this med for a few months. Nothing new about my appeal. Still in the process of being reviewed. Now I have to do the research and found out about my port and what insurance will or will not cover. Due to deductibles and out of pocket maxes that all reset in January I need to find out if it is better to try and do this before the first of the year or not. We will see. so unless something changes in the next few days, I will update after my doc appointment next week.

One last thing, God has continued to bless our family and get us through this tough time without my income. Thank you to all of my angels, who have been such a big help. You know who you are. Until next time...

Monday, November 8, 2010

From the lightweights to the welterweights

Nothing really new to report on the disease front. I have had a nasty little bug for a week now and will be glad when it is over. I am thankful I had a little break from some of Lyme symptoms when the cold was at it worst. The joint and bone pain has kicked in again and is in some new places. I guess that means I am stirring up more bugs and they are dying. That is a great thing. I also had a twitching episode kick in while I was driving. Not cool. I still felt okay to drive but I was really nervous when I was sitting behind a CHP officer at a red light. I was afraid he would look in his mirror and then pull me over thinking I was high on something. I have had a queasy stomach and been lightheaded and dizzy the last couple of days. I don't know for sure if what that's all about. The whole dizzy/lightheaded thing is one of the worst for me. It is a horrible feeling and it doesn't seem to be just in my head, but my whole body. I can be laying down and it still feels like I could pass out. I can't stand it.

So I realized that I have been on my current antibiotics longer than I thought. That means the beginning of December could be the start of the IV meds. Of course I had to research the whole chest port thing on line. Not looking forward to it. Plus, I hate needles. Although I agrees that this seems better than the PICC line in my arm I don't like the idea of having to use needles to deliver the meds.

I am still completely stressed out about the whole money/disability thing. Let me say, if I didn't before, that the incredible bunch of guys that I work with came through in a big way and helped out my family and I just found out they are not done. I couldn't be more thankful or blessed to have them and their families in my life. I know that what they did for me was not possible without the blessing of their loved ones at home as well. I still haven't heard about disability. I guess it's only been about 2 weeks so I have another two or three weeks to go I am sure. My new claim rep seems good. We had a chance to talk and she understands the urgency. I admit though, I get completely panic stricken when I think about the fact that they could deny me. I don't have another chance to appeal. I guess the only thing I could do would be get a lawyer. I don't have the finances or the energy to deal with going to court. I guess I am being negative though and I am not trusting God. It would seem that God has blessed us and got us through this far so it should be that much easier to trust things are going to be fine. I am just being honest when I say it is hard. It's like He has done this much, so how much more can or will He do? I should be thinking, He has handled this and now has the opportunity to handle so much more. Let's see how this is going to go. I guess just being able to get these thoughts out in the open makes me realize where I am going wrong and how I do need to look forward in anticipation with what God is going to do.

I can't help but feel like we have to look at the finances when it comes to timing and all of my treatment. I have been spoiled with good insurance for my whole life. As I have said before, we recently changed insurance at work. Unfortunately the change wasn't so good. They were a lot of things that were different. I haven't really had to deal with deductibles and out of pockets maxs before. I guess with everything going on, I haven't kept up on what my new insurance really meant. So my 7 year old is sent to the cardiologist for an irregular heart beat. She has also recently started having some episodes of dizziness. (God please don't let it be Lyme) Her pediatrician refers us and we go to Children's Hospital. I am thinking all is good. We pay co-pays and what not. Then this weekend I get a bill for over $600. I have a $500 deductible and then they only pay 80% of rest. Of course I burst into tears upon opening the bill. I am still a little upset this morning over the whole thing. I need to call and set up a payment plan with them to get this bill paid. One of the bummers about this insurance issue is that we have open enrollment on a fiscal year. The deductibles and out of pocket max's on a calendar year. So come January, the $500 starts all over. In the next few days I really have to look at all of the in's and out's of my policy and figure out where I am at. I just need to know if there is serious financial gain to waiting until after the first of the year to have my port put in. I think either way, we are going to pay a lot out of pocket but it could be the difference of $500 or more and that is a lot.

I guess the biggest thing I can do about it all is pray. God has used some great people in our life to help us up until know so why should I think He would stop. A few months ago it seemed hopeless and now I can see how things worked out. It will be amazing to look back at this time when all is said and done and see the impossible have become the possible. It's out of my hands.

Here is to eating healthy, getting plenty of rest, not worrying and not giving up! FIGHT! I feel like I am moving up from the lightweights to the welterweights. Lord help me if I have to move all the way up to the heavy weights! :)