Thursday, August 16, 2012

MCIDS- Is that what they are calling it these days?

It looks like I inadvertently took the summer off from my blog. I certainly didn't mean to let things go so long but I guess after more than 2 yrs you try to think about other things in your life besides your illness. I say try and think about other things because the reality is, my brain is consumed by this illness a good part of everyday. It manages to creep in and interrupt what I am doing with every pain I feel, every commercial for flea and tick medicine, every Facebook post from a fellow brother or sister with this illness...No matter what I do I can't completely escape it. 

I wish after two years I was also able to say that I have come to terms with my situation, that I am okay with it, and it doesn't bother me any more. To say that would be a total lie. Just today, I broke down and told God I was over it, I didn't understand why my family was having to endure this, I wasn't okay with it, and I wanted it to end. The good thing about my God is, He gets it and allows me to have my moments of frustration and anger. Then He gently reminds me, He has got it under control. I continue to work on trusting Him and having faith that something good is going to come from this. 

Things have been a little bit "confusing", (I guess is the best way to put it) over the last few months. After coming back from Hansa the second time, I was dealing with the news of the girls and focusing on them plus dealing with the fact that I didn't feel much better and was a little frustrated. I was actually feeling somewhat worse. After a phone consultation we decided that I should try taking some colloidal silver and that we would try another remedy for Brooke as her stomach aches had not cleared up. I knew I needed to follow up with my doctor here and that kind of threw a wrench into everything. Although my CD-57 number had increased a good chunk, a lot of other numbers still were not good.  My vitamin D levels are still low and now I came back positive for Kawasaki Virus in addition to the two forms of pneumonia, Epstein Barr, and HHV6 that I had already tested positive for. Although these are not acute infections where I am contagious, they are constantly in my system and can reactivate at any time. My system is taxed to say the least. My doctor agreed that I should do the silver because that would be my best bet against the viruses but based on everything I should go back on 3 different antibiotics. Dealing with all of this information in combination with a super busy All Star softball schedule for my daughter my treatment got off track and I ended up on a break from treatment. The reality of that decision has set in and I seem to be failing fast. 

Part of the frustration and confusion in this is that there is no clear cut treatment. With other diseases and illnesses there is usually a standard course of treatment. It is widely recognized, accepted and agreed upon by most medical professionals. With this, not so much. As I may have mentioned in an earlier post my husband and I went a seminar on Lyme by one of the top Lyme doctors I think in April. The information that came out of the few hours with this man was overwhelming to say the least. My poor husband was so lost because he had not thrown himself into the hours of research like I had and a lot of the terminology was foreign to him. Heck, a lot of it was even over my head. Couple that with the amount of information crammed into these few hours and your head was spinning. One of the things that stuck out to me was the push to change the name from Chronic Lyme to MCIDS- Multi Chronic Infectious Disease Syndrome. The reality is that a large majority of people with Lyme have other on going chronic issues, such as viruses, co infections, pain, yeast problems, heart problems, fibromyalgia, neurological issues...the list seems to go on forever. Changing the name in and of it self doesn't change much but I guess it is a better description for the totality of what we are dealing with. Next came the fact that there are about 15 different things that need to be dealt with when treating MCIDS and they needed to all be dealt with at the same time. That was a new approach to the way I had been doing things. It made sense but also left me wondering where I even begin. My head has been spinning ever since with what my next step would be and where to I going natural, traditional, a combination of both? Do I go broke going to Hansa or try something new that is local? Where do I go next with my kids?

Here I sit a few months later just as confused and still unsure of what we are going to do. The only thing I do know is I can not sit here and do nothing. That little break is catching up with me at a rapid pace. I am filled anxiety every night at bed time and can't fall asleep. I wake up tired, weak and in crushing bone and joint pain. I have seizures almost weekly. I am short of breath and have heart palpitations. My short temper, anger, rage and depression is ramping up again and I feel like an awful person. I would rather feel like I am physically dying 24 hrs a day then feel for 1 second the way I do after losing my cool with someone, especially those I love most. The bottom line is, I am once again afraid for my life and wonder just how much longer I can keep this up. My brain function seems to be decreasing everyday. I can't remember simple things, I can't spell to save my life,  I am getting confused, and in all honesty there are times where I questions my ability to take care of my kids. As school, sports, and life seem to ramp back up to a frantic pace we have got to find a way to deal with this all. Ask for help, say no, cut down on the clutter anything to make things as simple as possible. 

We also realize the need to go back to some basics. Summertime bbq's, birthday parties, etc...have contributed to a slide in our diet. So this Sunday our family, along with another dear family,  and maybe some others are embarking on 30 days of clean eating. I am hoping being accountable to someone other than my husband may help my to stay on track. Drinking plenty of water, using the sauna daily, getting plenty of rest, some exercise and taking my supplements and meds are also on the list. I am hoping that over the next 30 days we may gain some insight, clarity, and direction for where to go next. 

I am almost ready to pay someone to take over my health care. Someone that can do the research objectively, look at the all the options and advise us where to go and what to do. In the end I know these are decisions that we have to make for ourselves. You just begin to get so long do you try something for before you decide it isn't working? When does a medicine become more detrimental to your health than doing you good. Once again, the reality has been made very clear, by top medical professionals in this field, I will be dealing with this for the rest of my life. For my kids, this will truly have been a life long battle. I know our situation could be a lot worse. We are blessed and still have the ability to bless others for which I am so thankful. I just need to know that we are making progress and getting somewhere. Thanks for "listening" and please keep us in your prayers. Will check in soon.