Today's check of the midline went well...long but well. I had a sweet lady from the church go with me and I am so glad she did. The place was almost full with questionable content on the tv that her poor little ears would have had to hear had it just been me and her. Instead, she enjoyed some one-on-one time with a sweet lady. Maddie did really well today despite being dragged around.
The nurse didn't know why my biodisk looked like it did but was concerned with the tape over everything. She did a dressing change. The insertion point is a little more red than last week and little more puffy but it didn't appear to concern the nurse. She used a different biodisk (the original ones before the silver ones) and taped it differently. She was the only one working in the lab today and it took a while for her to get to me. Then she kept not having the right materials. Then I found out that she doesn't do midline dressing changes very often....aaahhhhh. All in all, things are good and we are good to keep going. Of course, on the way home I realized the company (its all the same company called Quality Infusion) hadn't called to deliver the medication. So, we are good to go but sort of not really. :) I will need to make a call in the morning to see what happen. We have enough for tomorrows dose. We got back to gymnastics with about 15 minutes to spare. Did I mention how blessed I felt that someone took their afternoon to pretty much come "hang" with us while all this took place. It has been a pretty good day. Thank you for the prayers. I was at such peace all day and knew that whatever came to be would be. It is so not like me to be like that but I like it.
Tuesday, May 4, 2010
Update and Prayer
I haven't blogged in over a week. I wanted to last week but felt blocked.
Last Monday we saw our natural health doctor. We hadn't seen him in 6 weeks. He had proposed some alternative methods he wanted to try in treating the Lyme but asked us to research and pray about them. We did and when we saw him last week we let him know that at this time I feel completely saturated in what I can handle and don't feel I can do anything additional at this time. I think he was disappointed but he understood....one reason I really like this doctor. He also ran a test he hadn't done since our first visit. He took my weight (which was down..yahoo...wouldn't suggest this weight loss program for anyone else though :) ) and then hooks up a couple electrodes and the numbers he gets he calculates and is able to tell you how much of your weight is fat, muscle and water, and how "old" your body actually is functioning. I had hopes I would be "younger" but I was actually older and he didn't share how much older...scary. But he did say he expected this to go up at this point in the treatment process. However, the numbers revealed I have lost 15 pounds of fat and 3 pounds of muscle. He was impressed with the fat and not surprised by the muscle but also concerned. Its a balancing act just as with other diseases. The treatment has to be enough to kill the organism but not kill the body. He added an additional ingredient to my shake I do for breakfast to help with the muscle loss.
Tuesday and Wednesday I added this ingredient in and not 10-15 minutes after finishing my shake and morning meds I took a dive. I had been sitting at the table with the girls doing school and had to then take school to the couch I felt so bad. I wasn't sure if it was the added ingredient, or if it was that I had woken up with more energy than usual and just noticed the dive more. I didn't know. Thursday I left the ingredient out and email Dr. Kolodjski (another thing I like about this doctor). Thursday the dive in how I felt wasn't nearly as bad. Friday I added it back in but not at full strength and the dive wasn't nearly as bad but worse than Thursday. By Friday afternoon I heard back from Dr. Kolodjski and he suggested not doing the shakes for 3 days and to keep note of how I felt (he has me keep a food journal and a symptom track daily).
This last weekend was one of the best weekends I have had in over 2 months. I was surprised since we take the Flagyl and we are full strength with it. Because I didn't do my shakes I had to find 30 grams of carbs some where else. So it was nice to have a slight change in my diet. 30 grams goes quickly though. I would have a tortilla with an egg in the morning (theres have of the carbs) and something else in the evening. One night we had chips and salsa (there goes all the carbs). Sunday morning I woke up aching in the joints but was able muscle up the strenghth (with the a lot of help from hubby) to go to church. Yesterday, we were out and about most of the day. Its the most activity and walking I have done in probably 2 months. I kept expecting to feel "fried" and crash but didn't. I was super tired at the end of the day but not "fried". It was so nice.
I emailed Dr. Kolodjski this morning to let him know how the weekend went and he said his diagnosis of what going on is that the shakes are "detoxifying" my system to fast and/or I have established a sensitivity to an ingredient in one of the powders I use. So, I am to have a shake tomorrow with just one powder and the next day just do the second powder and so forth. It should be interesting since it took a while to get used to them together much less separately. However, I noticed my energy level today is up..its difficult to describe. I'm not as edgy, and feel like my mind is "clearer". I don't feel like I can run a marathon tomorrow but I can at least function with my kids without getting easily frustrated or exhausted. Becka had more energy today as well and did so well with school. We are all anxious for school to be done so we can just play.
This weekend (Sunday) I noticed some discoloration on the bio disk that sits on top of where the catheter goes into my arm. It has been itching more than usual (it usually doesn't itch at all). It still flushes well but I figured I better call and just make sure everything is cool. Becka has gymnastics today and it would be easier to run by and have it checked today while I am down there than tomorrow. I called and they definitely want to take a look at it. If you are reading this before 5:30 on Tuesday please pray all goes well. I have arranged for a sweet lady from church to go with me to cover all bases if needed. I will drop Becka off at gymnastics (I hate doing that) and Maddie and this sweet lady will go have the midline checked. I am not worried about it. Whatever happens, happens and God already knows about it. I am just on for the ride. I don't know if they will pull it out or not. If they do, they most likely won't put another one in today due to it being a special person that does it who isn't always there and the process it might take to have another one put in (paper work, another doctor's appointment, insurance, etc.) We did ask Dr. Salvato that last time we saw her what would happen when this one had to come out and her response was to put another one in. As long as we are seeing progress (and we are) than this is our course of treatment. Please be in prayer about all this. Insurance, due to lack of research and therefore lack of documentation by specific people-politics, has denied covering the medication past 4 weeks...however they have approved the midline (device it goes in) beyond that. It is crazy. There is research out there but if its ignored by the people that write the documentation for CDC and other important organizations that inform physicians, insurance, etc...than it affects how those with Lyme are treated.
I will try to blog and let you know how today turns out. Please just know I am at complete peace under God's grace about it. It is well with my soul!
