I think we all know how important diet is when it comes to our health. When things are going good it can be easy to over look. Some people are blessed to not have a sweet tooth. I have a friend like that. She can have a whole jar of Reese's on her desk and not have the desire to eat one. I am not blessed in that way. I don't have "a" sweet tooth. I think I have sweet teeth. I wouldn't eat just one, I would eat the whole jar. I love sweets. If I were to be completely honest, there have been plenty of times in my life where I could say I didn't have more than one fruit or vegetable for an entire week. That is really sad, I know. So why I decided to bring up the diet thing to the doctor again, I don't know. I knew I wouldn't like the answer. What would be the one or two most important things I can do diet wise right now? NO SUGAR! Seriously? It's not drink a gallon of water, it's not eat garlic, it's no sugar! Sugar is toxic and my body doesn't need any more toxins than it already has. I get it. I know it's important. I just know it is hard for me. You are asking a junk food junkie to go to health nut. No sugar, no processed food. The doc says to go back to the foods God gave us to eat...Well that would be no problem if God would just make carrots taste like chocolate. The doctor did say chocolate is okay. Basically if it comes in a box or out of a window, I shouldn't eat. At the donut shop they don't come in a box or out a window so they must be okay right? The doctor told me about a book he wants me to read about diet. Guess I should take his advice. I just have to find the little things I can change to get me closer to a good diet. What can I eat in place of a chocolate chip cookie that still tastes good? I'll let you know when I find out!
Now on to whats new with me and what the doctor had to say. I don't have a whole lot going on in the way of new symptoms. I have noticed a few issues with my vision so I definitely have to go to the eye doctor. These things can be Lyme related or from one of the antibiotics I am taking. I certainly don't want to mess with my vision. I had a few days of being extra tired and a days of some intense bone/joint pain. Nothing significantly different though. I have had some tightness in my chest and been short of breath more recently. I am hoping that doesn't get any worse. Heart and breathing issues scare me the most.
I saw the doctor this morning. My dad went with me. I have seen a totally different side of my dad then I ever had. I love my dad. He has always been a very hard working great guy. I have just seen him become so passionate over this Lyme thing. He has been saying, what ever it takes, we will do it. He is certainly not messing around. I was glad he came with me. He has always worked so hard and so much that it has been hard for him to be involved so I am enjoying the fact that I have him involved in something so important. So back to the doctor's appointment. Nothing has changed with my medication. We are going to stick with the same medications I am currently on. My doctor would like to get a total of 3 months of Mepron on board before we do the IV. Here is the game plan. Do about 2 more months on current program. Next visit we need to do a complete panel of tests to review the condition of my gut. (I'm trying to put it nicely) As I already knew, my gut can be in sever distress with all of the medication I am on. Unfortunately, my insurance doesn't cover the tests. It will be between 200 and 250. It needs to be done though. Then we will be able to give me some other things to get my gut in good shape for the IV.
After discussing the difference between the port in my chest and the PICC line in my arm, it sounds like the port is the best way to go. The way it was explained is basically there is some procedure to insert the port in my chest. Once a week we will access the port with a special needle (God help me, I hate needles) and leave it in for four days. I will take 2 grams of Rocephin twice a day for 4 days and then have 3 days off. I or we will have to mix it up, put it in a bag, and it will go into the port over 20 to 30 minutes two times a day. He didn't say how often the port itself needs to be changed or replaced. He said that will go on for about 6 to 8months. Hopefully that will take care of most of it.
I gave the doctor a copy of the insurance companies "Clinical Policy Bulletin" on Lyme and what they need to have before they will cover any IV. If we are blessed we can get 8 weeks covered. I will take what ever I can for sure. The good news is the doctor thought the price he quoted of about $250 a week included the medication. That was a huge relief because a few other Lyme patients have quoted this medication at about $25 to $35 per dose.That would add about $200 a week. So I guess I know how things are going to proceed for at lest a little bit. Perfect timing right? Two months from now puts us at about Christmas Day. What a Christmas present.
My appeal for disability should be in today. Now it's just a waiting game. If I could just get this approved I can really focus on getting better and can lay out the budget to try and pay for treatment. Once again, I have to remember to trust God on this. In this trial His glory can be made known. I know I have a lot more to say but my mind is going blank and I'm getting really tired. So I guess that's all for now. Thanks for checking in and keeping with my story. Don't hesitate to leave me a comment. I always like to read what you have to say. Until next time...