Sorry I haven't been posting....some updates...

Hello everyone! Sorry I haven't written in a long time! A lot has been going on though since I last posted.

Both of my sons are schooling at home now with on line schools. My youngest son was the first one who started this past school year. My older son just started mid year a few weeks ago. I am sorry to say that this is because they are not well enough to attend school all day every day. I am sad that they miss out of some things at the regular school but we do our best to keep them social still. Unfortunately this was our only option. So it's not like we had much of a choice. We did try a school tutor with my older son for a few months. His grades were dropping and the teachers were not sending home work on a regular basis. So we had to pull him out :(

Since July of 2009 we have been traveling from Ohio to Wisconsin to see a Lyme doctor. Myself and my younger son have seen some improvements but we are stuck right now and can't seem to improve any longer. I believe there are other issues going on like thyroid, adrenal issues, yeast, etc. My oldest son has not really been improving. His main symptoms is chronic fatigue. I feel like the way he has not progressed that there is something more going on that needs to be found.

With all that being said we have found another doctor to try. This will be our 3rd Lyme doctor in 2 1/2 yrs. My theory is if you are no longer improving that you move on. We will now be traveling to North Carolina. We actually have our 1st appt on March 11th. So we leave next Wednesday to go down there. I really hope she is able to help us! I had a few other doctors that I really wanted to go to but they were not affordable. If you all remember I said in the past that many of these doctors can't take insurance. So we have to pay and then we can submit it to our insurance and if we are lucky we might be some of it back. Or maybe not? It is very expensive. First initial appointments can range from $400 a person to $1000 a person. That doesn't include any blood work that may need done with a lab that may not take insurance either. Some of the really good doctors wanted to see us monthly so there would be no way we could afford them!

As far as life in general goes these days I don't get out much. (my house is my safe haven!) Other then basic things I need to do I don't really socialize much anymore. Many reasons for that. But one big reason is that I have pulled away from most of the people in my life who have never taken the time to discuss our illness with me. (to my surprise this is mostly family btw) People just don't understand how it makes me feel that they have never said anything to me. It leaves me to wonder in my head what they really think? Do they care? Do they even believe me? Do they take it seriously or do they think it's no big deal? Many will say they say nothing because they don't know what to say. I can assure you this is the absolute worst way to handle it! Saying nothing is the worst feeling ever :( This illness has changed our lives totally! People just have no idea what we have lost because of it. Especially the things the kids have had to give up. We have had to endure the loss and devestation of this all on our own. Many nights of crying and many days of not knowing what to do or where to turn. This has made us closer as a family but has also caused us to push away others who are not there for us. If I am distant from you then this is why.

So tell me this...Why would we want to do this on purpose? I mean who would want to fake being sick and have to give up so many things in their lives? That is just crazy!! It sucks having an illness that noone understands! It sucks having an illness that noone wants to treat! It sucks having to watch your kids give up so much of their precious childhood! I would never wish this on anyone!

Another thing some people have done is they will talk to me a little about it but then they act like they don't believe me when I talk about it to them. This also bothers me! Yes I get that it seems unreal that we all have Lyme disease. It isn't normal that multiple people in the same house or family have the same disabling illness. But guess what it is normal with Lyme disease. Whether or not you know that is not the point. Thousands of entire families have this illness. Many even have both parents with it and noone can work. Many can't afford to get treatment because they can't work. Many are going to lose their homes or have already lost their homes. But all have lost so much from that tiny little tick that most people don't take seriously!

For the few people in my life that have taken the time to sit with me and talk and get a general understanding of what is going on I would like to thank you! From the bottom of my heart...it means more to me then I can say!!