Sunday, October 23, 2011

Looking back at where we have been...

I  took a look at our caring bridge site tonight and saw my last note. It was dated early 2009 and I noted that in 8/08 we had killed Babesia and as of 1/09 we were officially starting treatment for my husband's classic Lyme infection. It seems like forever since we were in treatment. Scott was in IV therapy from Oct. 2007-March 2010. By the beginning of 2010 we were hitting Bartonella hard and his numbers went down. Once his line fell out of his chest in March he was given a break from IV's. Here we are 1.5 years later and his blood work shows that his Bartonella numbers have doubled again. It is defeating to know we worked so hard at something and were so close to now be back where we started. When it comes to Lyme Disease, I firmly believe it can not be eradicated and that makes me very sad.

Thursday, October 20, 2011

Lyme Disease Ramblings

It has been too long since I have written. It is time to get this thing updated and to keep up on the Lyme world. I am afraid that we have not been very good advocates since my hubby has stopped IV treatments. He spent 2.5 years on IV's that consumed our life. They were twice a day, 3 hours at a time, 7 days a week. It really was his full time job. He was at death's door more than once, had his body flooded with Ammonia, had his organs shutting down and was just too sick to do much of anything.

It took us 4 years to get him on disability but we are so thankful for that. It will be 2 years in January although it has only been 1 year since we were allowed to get the entire amount. For the first 9 months 80% of his disability went to child support while the courts took their time working out the child benefits. The mom was getting hubby's 80% plus the additional child benefit on top of her 70,000+ a year job. It was really tough on us especially when I lost my job that same Jan. We moved that May and I was lost in the unemployment system for 6 months. Our only income was the $200 a month we were getting from hubby's disability. Talk about hard times!

I am very thankful that we are in a different place now. I was jobless for 15 months. Not getting unemployment for a total of 9 of those months and working 2 part time jobs to try and keep food on the table. We grow when times get tough don't we? I got a job in March and still love it. A paycheck is so exciting for me! I still can't believe I get a paycheck every 2 weeks! My hubby is taking another break from antibiotics because it affects his mind so much that he wants a clear head. It's cruel, isn't it? You are sick and need to kill the bugs but when you don't treat them, you sometimes feel better. Once you start to do the "right" thing and kill the bugs you feel HORRIBLE. What kind of life is that?

What are some of the symptoms you HATE due to the treatments? Are you contemplating taking a break from your treatment to get some relief?