Friday, May 29, 2009

What will be the next step for me?

In my MS treatment.....that is. I am working on figuring that out at the moment. After my MRI last week, I learned that I have apparently had some silent lesions working although I have been physically feeling well lately (besides the pesky sinus issue). I have some lesions that have enlarged and a couple new areas with lesions that were not previously there. In total I am looking at 4 places that have grown or become active since last August when my last MRI was taken and I had been showing improvements. I was shocked and almost in disbelief when I first heard the info. After a while I worked it back into my head that I know there can be progression with out is a fact of this disease. Many people will go undiagnosed for years with silent lesions then one will hit in just the "right" spot and bam....they do an MRI and tons of them will show up and eveyone will be surprized. It is almost like 2 steps forward and 10 steps back, or it feels like it anyway. The doctor talked to me about the options....or lack of, really. This is MS, there is NO cure. Steroids are pointless really as we do not know when this happened, and so what would that help, nada? Switching interferon meds.....well, same sort of meds may not really be any more effective, as the one I am on is one of the best, and why beat a dead horse(still taking it, not changing)? The other form of med I chose not to go with, as she also choses not to use, Tysabri, due to the extreme side effects and deaths it has caused. The other option is the IVIG treatment option she has talked in the past a few times. There seem to be many benefits to the treatment the more I read about it. I have decided I will do it, if my insurance covers it. It is not cheap by any means, even with insurance I will be paying alot of money out. I just want to feel good and get through this sinus stuff....I thought I would be good once that was done. I go back in 8 weeks for another MRI to see if anything else has happened in the meanwhile. I am currently waiting for the insurance to verify the request on the IVIG treatment and then we will go from there.

Tuesday, May 26, 2009

It's the Debil Bobby.....

I tell you the internet is the Debil! And it sucks me in....being that I am a self-taught graduate of ER's medical school and can diagnose myself with the help of WebMD and problem.

Seriously though, I can let my mind get away from me sometimes when I get calls from the doctor about MRI's that are not what you expect them to be. Tonight at dinner the doctor's assistant, Matt, called to tell me that my blood work from last week all came back normal. That is awesome, my liver and kidneys are all ok it seems. I then asked huim about the MRI as I had not heard from anyone on that yet....oh yeah, Dr. Cantrell made notes on that here, she says.......(uh, um, if I can read her writing...) um, hang on.....ok, the MS lesions are larger it looks like and active so she wants to make an office visit to discuss treatment options. When can you come in?

That is not really what I was expecting to hear. I mean I have been feeling fine....not any symptoms really lately. I thought I would see vast improvements by now on the Betaseron. It makes my mind race and wonder. I want to have the reports and MRI cd right here so I can look at it on my own. I have gotten pretty good at reading them and comparing them for myself over the past few years. I am glad I get to go in tomorrow and do not have to sit and wait around for too long to stew on it. That would push me over the edge I think. I am already frustrated that the new antibiotic does not seem to be doing what is hould and I and supposed to be going back to the doctor for that on the 3rd. I guess he will be able to look at the new MRI and see what he needs to see there as well.

Prayers - I need them right now - for peace of mind and health of the body & mind!

Thursday, May 21, 2009

When do we really become old?

I mean it??? I have never really had an issue with actual age. No birthday has affected me like 30th might, or the dreaded 40th as it does some. I think I have honestly never had any problems with my age at all. I am however beginning to think that, mentally anyway, age might be becoming an issue. I feel more overwhelmed by things in such ways that they might have never bothered me before.....I am not having regrets about my life, but looking back at friendships from the past and wondering what happened to them. How do they drift away, or fade like they do? Why does it seem like it was only yesterday that we spoke to someone but it might have been 20 years since we saw them? Seriously.....I think Facebook has done this to me......

I tend to be a deeply caring person, once you are a friend, you are usually more like family. I adopt people....I love them, hurt for them, and with them. I would do anything for someone like this I was close to.....even if it has been 20 years (give or take a couple). It is getting harder to reconcile the pictures in my mind with the reality of today, sadly. I know and understand people change and may not have the memories of yesteryear that I do, but it is still hard to wrap my head around at times. Can you ever really go back and pick up where you left off with an old friendship? I have a few friends that I have been blessed to be able to do this with.....very blessed. I wish I was able to be closer to a few more old friends........maybe in the future?

Sunday, May 17, 2009

Conservative or Liberal....

Are these really just 'labels'? I mean if we are truly Christians, shouldn't we just be Christ followers? Wouldn't we want to "do the right things" and live a life according to what the word of God as written in the Bible? The book is the one living book, so it speaks to us all differently each time we pick it up. We each have to draw from it what we can.

I was recently reading a book called "Do the Right Thing" by Mike Huckabee and he had some wonderful insights on this theory. It was not just a political book of rhetoric but also an 'in your face wake up call' for some. I think many people have really forgotten what general caring and care-giving actually are, when it comes right down to people. We tend to get so tied up in the necessities of the "laws" and ideas what others are doing, we forget to remember the grace and love we are meant to show each other. I think that is what God truly meant for his people. We are born sinners, every one of us - we have to train our children to be "good" and we must chose between the good and bad daily. God gave us this gift of free will and His gift of grace but we must be able to discern what to do with both. I find that in all reality it is not a hard decision to reconcile. I know I do not have to agree with everything that everyone does, as they do not have to agree in turn with me, but I can also love a person for being the person they are, knowing that God made them, and they are special and here by the same grace that I have been shown. This may be a more difficult task with some than others, but I think this is the test that God has given us all in our life. Difficulties, love, compassion, grace, forgiveness......we are all truly blessed, even on our worst day. I firmly believe that one bad day with Christ is far better than an eternity without Him!

Taking a step back....

for a while. I am going to stop most of my large group interactions and extra things I do right now for a little while. I have been sick for about 2 months now with an ongoing sinus infection and decided I needed to get over it! I went to and ENT and he agreed that I probably never got rid of the infection that sent me to the ER in March. I have a sphenoid sinus infection, which can get to be pretty bad if it goes untreated or gets to bad. It is close to the brain and can cause infection in the brain as well. FUN, not. Anyway, after my 3rd round of antibiotics that were not doing anything, he switched me to Levaquin and a decongestan and another steroid pack. I go back to see him in 21 days to see how I am doing after the new treatment and we will go from there. I saw the neuro the following day and she was good with the course of treatment but wanted to do a new round of MRI's (will be done on Tuesday) to compare to the last set as the CT scan made mention of some white mass she was not sure of. Great.....really I am not too worried about it as I have been doing really well on the MS front. I have been feeling good (other than the sinuses) and do not have any MS symptoms that I can notice for the time being really. I just hope this works and I get to feeling 100% better - I am tired of feeling bad! I do not look forward to the possibility of major surgery either.

Thursday, May 7, 2009

Blogging Blahs

I have started a few blogs lately then been sidetracked or just not felt the need to post them or even complete them. I have had the blogging blahs I guess. I have had a lot going on but not much to say about it maybe.....or maybe I have not know what to say about it.....I do not know. In April we made a trip to Atlanta to see my best friend, Ginger, who moved there in January. What a beautiful place they bought! It was a wonderful, but quick weekend! We got to celebrate Arden's 3rd birthday while we were there and just hung out and enjoyed each other's company - no running around seeing the sites on this trip - it was just about seeing friends! I tell you I will fly next time I go though - that is a long drive and I am not up to that much time in the car! :)

We kicked off the Adventure Kidz Band at church in April also - kinda like a Grounded part II as most of the old band is back together playing now. I have ending up being sick pretty much most of the time since we started back up so I am not much good to the group. Since I had my trip to the ER at the end of March I have not been able to shake this sinus thing in my head. I am on 3rd round of antibiotics and still not feeling well. No rest for the wicked either.....

Ken road in the MS150 Frisco to Ft. Worth this past weekend. He actually road 50 miles - which ended up being 1/2 of it as it was called due to the weather. He hurt his knee in practice a while back and had not practiced in a while. After he road about 40 miles he was pretty much done....the knee was gone. He had to call me to come get him in Sanger and then the rain set in and the ride was called later that day for day 2. He did so freaking awesome! I can't even imagine doing 3 miles.....he rocks - and he did it all for me! I love that man! The ride had over 4000 riders this year. It was amazing to see so many people doing this for MS and people with MS.

I have decided to go see an ENT as I keep having sinus infections and cannot seem to shake them. I have been sick since late March pretty much when I made that trip to the ER and never really cleared up 100%. I am so tired of feeling bad. I want to have a clear head and no drainage!! I read that the deep sinus infection can be fatal.....that is great! Something to look forward to.....