Its been a while since I have blogged. In some way the reasons are good and in others they are not. Basically it comes down to this: Without an IV in my arm to slow me down, I am up and at 'em doing, usually too much to the detrement of the body. There are things to be done, always. and unless I just feel bed ridden horrible I am trying to get things done. Lately, the last 3 weeks have been spent mainly getting ready for the girls to start school. We had originally planned to start August 23rd but that didn't happen. Chris felt we should post pone it till the following week. The weekend before August 23rd I was in bed most the weekend, and ended the weekend having 42+ youth at the house for waffles and bacon and swimming. I had 3 wonderful ladies helping me with 4 griddles, and 4 waffle irons and we blew the fuse at least 5 times as we cooked 9 pounds of bacon and 1 3/4 boxes of bisquick for waffles. It was awesome! After the bacon fog cleared I was happy and very accepting of us not starting school the following day. As last week progressed I also realized I was as ready to start school as I wanted to be. We were missing a couple important items. I enjoyed another summer week without the rigid schedule of school.
This last weekend was a good weekend. Saturday we got a lot accomplished with the house...things that have needed to be done since we moved in. To those on the outside it may have looked fine and settled but as a woman there were definitely some unsettled things. I don't know how to be still, which scares me. I learned a lot in my 3-4 months of having to be still. I don't want to forget what I learned and return so quickly to running around with my head cut off missing the important things of life. Granted, "running around with my head cut off" looks a little different from what it was last Fall but the concept is the same.
Today I am feeling extremely run down but at no surprise with how I have been "busy" with stuff. It takes longer to get things done due to my energy but I do enjoy the feeling of accomplishment and productiveness. I came to the realization today that as long as I am moving my mind is off of how I really feel. The minute I sit down I am all too aware of how my body hurts and is lacking the energy I am requiring of it. I have been discouraged, frustrated and worry and fear have crept in this last month. Symptoms we had before seeing Dr. Kolodjski last November have returned. This means that there is not a day I am not in some type of pain. From about February to the end of July I was practically pain free except when going through a herx. When the IV was removed these symptoms returned. The headaches, stomach distrubances, shoulder and hip and hand pain and the cramping of muslces. Most of the pain and cramping is on the right side of the body but the left chimes in as well. It is weird to be standing at the mirror blowing drying my hair and my right big toe cramps...just the big toe....the whole toe. It feels different from a toe cramp, though that won't make sense to most. When I am sitting or laying down, everything just gets stiff and the initial movements are quite uncomfortable.
The resurgance of these symptoms has been on top of the daily symptoms that have persisted such as memory, foggy brain, weakness, slurred and/or stuttered speech, shedding of hair, and no energy.
Its August, approximately 8 months into treatment and I had hopes of feeling better then I do. Doubt and fear want to creep in and I try to keep them at bay by reminding myself that my God is still in control, still has my back, and whether I "get better" or not it doesn't change that this life is His to do with as He sees fit for His purpose. I try not to focus on what science and research says should be going on or not going on, but take one day at a time focusing on God. I believe He has my back and is with me no matter what hurts or doesn't work. I have been apprehensive about starting school and the whole word "Fall" and have been trying to figure out why. Is it because of last Fall and aweful turn for the worse I took and how horribly challenging it was to keep house and school the girls and just function. If you don't know me well you would ask why I am home schooling again. But Chris and I prayed about it and oddly both felt at the same time the definite affirmation that we are to home school. So, I try to meet this apprehension with the reminder that if God wants us home school then He will give me what I need to do it.
I have experienced the frustration of trying to do things. I don't do well with a tight schedule (like Sunday mornings or having to get somewhere by a certain time). I do better with days that have no structure. This is so not like the true me. I am a type A personality that used to thrive off of routine and structure and schedules....at least I think I did. Last school year we had some pretty rough days with me being pretty frustrated with Becka. At the time we didn't know what it was or what was causing it. Now, we do but just knowing the cause doesn't make it go away.
So, there has to be a delicate balance. I have to ration my energy or I get frustrated. Like yesterday. I went to the grocery store for the first time by myself with just the girls. By the time I got home, I was fried for the day and down for the afternoon. When the energy is tapped out my fuse is short and I am grumpy and short with my family. Sunday mornings is another example. To get up and get the girls and I ready and to go to church and all that goes on at church, by the time I am home I am fried for the day. Too many days of that in a row appear to do me in like today where its not even noon and I am shot.
On the outside I look "great" and "healthy" (other people's comments) but I feel crummy. My smile is often misunderstood as feeling and doing well, when in reality I feel crummy but am at peace with it...most of the time.
I still find people's reactions to me interesting. When people ask "how are you doing" most don't really want the full story. I do not offer information without being prompted but am more than happy to share what I know about this disease and what is up with out treatment if asked. Its just that most don't really care enough to really want to know. If they have really cared enough to invest in us and cared enough to learn and get to know us then they still may not understand what is going on but they accept it. Its those that have not invested in getting to know us that have sat back in judgement and have criticized. It is interesting and frustrating all at once.
It doesn't help that we are in the phase of treatment where not much is happening (no IV's to cause "drama" I guess) but we are in the long haul of being on 3 antibiotics and waiting for numbers to be favorable. Our last visit with the doctor August 16th affirmed that we are supposed to be on 3 antibiotics (there was controversy with some on this...glad I listened to my intuition) and that, yes, the CD-57 number of "15" is pretty pathetic. But we also got some clarification on misunderstood information. On the Lyme test there are two sections and each section as "titres" or bands. Each band represents an antibody to a specific part of the bacteria. The top section is called "IGG" and the bottom section is called "IGM". The IGG shows past infections. The bottom section shows current infection. I think we started with one positive band at the top (IGG) and one positive band at the bottom (IGM). We were first under the impression that we were working towards two tests with no bands positive on the top or bottom. It was further clarified that the top band will always be positive, similar to a mono test. If you have ever had mono you will always show positive for mono (on the IGG part of the test). We currently do not have any positive bands on the bottom, which is a good thing. However, the CD-57 needs to be 180 with no positive bands on the bottom to be considered in remission and for treatment to stop. Till these results are reached, I will be on antibiotics. It is possible that if there aren't changes that the only thing that will change will be the antibiotics used. The only reason we are not still on the IV is because insurance will not approve it and we can't afford to pay for it out of pocket. We will have more labs done the week of Sept. 8th and we will see the doctor again two weeks after that (I think). This is the long haul of the treatment where things don't move very quickly or dramatically. However, based on what we have researched and what the doctor has said, the CD-57 will not creep up to 180 but should leap up. I think the doctor is hoping and expecting that our next test will show a major increase to at least the 70's or 80's.
There is a part of me that gets anxious for the nest set of labs but then I remember that my trust is not in the science of this disease and what research says it should do. My trust is in my Lord and knowing that it will be what it will be according to His purposes. Some days are easier then others in doing this. One of my biggest fears is that the test will indicate remission but all the symptoms will still be going full force. If I never regain "my life" back I have to accept that and be content with that. It would easier to accept if others accepted it but there I just reveal how concerned I am about what others think, thus taking my focus off of above. He has a reason and a purpose and a plan for everything, big or small. He will always be in control. I must rest in this each and every day. Nehemiah 8:10..."Do not be grieved, for the joy of the Lord is your strength".
