MS Update...

...And not really unexpected news.


I had a visit with my Neurologist a few weeks ago because I had noticed my balance had been continually getting worse and I just had not been feel like myself...well atleast my new MS self. As I had suspected for some time the rate at which my health continues to deteriorate has increased. As I said, my balance has continued to get worse causing me to stumble on a regular basis and walking any distance at more than a snails pace exhausts me to the point I can not function. He also noticed that when I walk now I'm rolling one of my feet to compensate for the balance issues and dragging my feet more when I walk which also contributes to the tripping and stumbling.

He suggested doing an MRI and tweaking some of my meds. Increasing my Amantadine to 3 times a day and adding Ampyra 2 times a day also increasing my Nurotin to 300 mg 2 times a day and 600 mg at night. Like most medications for MS the Ampyra is extremely expensive so I had to wait to start it until I could get on an assistance program.
  Well that program came through while me and the Cable Guy were on vacation and my meds arrived a few days ago. The side effects are ugly but I continue to take it in hopes that I will get used to it and it will help. Unfortunately the success rate for this drug is only 30%. That is only 30% of all people with MS have any improvement in symptoms.

My MRI is scheduled for this afternoon after the required visit with the vampire yesterday for blood work. I have to admit I'm not very concerned by the test itself but the results of the test scare me to death. If there has been alot of change, meaning more lesions, my neuro wants to change my injections. This could be bad because I picked this particular medication, Copaxone, because it has relatively few side effects compared to the others.

I have to say that I have not really been satisfied with my visits with local neurologists and because of this I have been doing some research on other doctors that specialize in MS. I found one, an MS clinic, about 3 hours from here.  I have a MS friend who has an appointment there soon and if she has good results with them I will be pursuing that route.

 I have been having alot of pain in my neck as well as increased neuropothy pain and trouble with insomnia. All made worse by the fact I will be returning to school next week...

In the meantime here are some more pictures for our vacation...

A Great Vacation and some Butterfly Pictures

The Cable Guy and I went on vacation last week. Our first one without the kids. It was great to be able to just relax and do whatever we wanted, like shop, without worrying that the boys were not having a good time.

Here are some pictures from the Butterfly Palace. Hope you enjoy them as much as I did/do.

Sad

I hate when my kids are mad at me, even if it is over something I feel is for their own good.

 I'm finding it hard to be the parent of an adult child starting out in the real world especially since hes been away at school for a couple of years and used to being on his own and making his own decisions with out me around to see the decisions hes making.

I just want to  know hes safe and can take care of himself is that too much to ask?

It was so much easier when they were little. I miss my little guy. Hes growing up and I don't like it, not at all.

Decisions and Disappointments --Update

Well the proverbial shit has hit the fan so to speak. The bad decisions have indeed ended in bad consequences. I wish I could say I didn't see it coming but I'd be lying which only increases the disappointment  and sadness.

Sadness because my momma's heart wants to fix it but my momma's head knows I have to let the chips fall where they may and hope some lessons are learned. I'm only sorry the lessons are being learned the hard way.

Disappointed because I know it didn't have to be like this and so much potential is being wasted.

Sadness because the consequences effect all of us in some way and therefore disappoints us all.

In all of this I know that God has a plan. It definitely is not the plan I wanted or expected but in the end its not our plan that is important but His and I have to trust that He knows whats best and what the outcome will be.

Please pray for piece and for knowledge for my family....


He never promised it would be easy only that he would be there to help us through it all.










Its always hard to watch someone you love struggle to make hard decision that can and sometimes do effect their future. Its even harder to watch someone you love be disappointed because of the consequences of those decisions. Whether we like it or not, whether we plan it or not our actions have consequences both positive and negative. Its the negative ones that we so remember and have the biggest impact not just on that person but everyone that loves and cares about that person.

Lately there has been alot of decisions being made in my family. Some with good consequences some with bad and with the bad comes disappointment.

I have watched my son struggle to transition from being a boy to a man and have to make decisions that will effect his future. Decision that, as a mother, I wonder if hes doing the right thing even knowing that they are his decisions to make and his lessons to learn. I struggle with letting him make those decisions and can only hope he learns from his mistakes when he does make a bad decision.

I have watched my step-son make bad decisions to return to a life I fear in the long run will lead him down a path that hes not strong enough to return from; knowing hes making a bad decision and being helpless to do anything to stop it.

Disappointments for them when their decisions don't have the desired outcome, disappointment for me because I don't want to see them hurting or disappointed.

It makes me wonder if this is how God feels about us? He sees us making decisions that will effect the rest of our lives and is powerless to do anything about it, only hoping that we somehow learn from our mistakes, loving us no matter what those decisions are or the consequences they may have.

 Loving us in spite of ourselves, unconditionally.

Guy Fieri and The Road Show

 A couple of months ago I was playing round on my phone when I should have been paying attention in class I was quickly checking my phone between classes and came across and advertisement on our local news ap about Guy Fieri, the host of triple D (for those of you that watch the food network you know who and what that is, for those of you that don't....well you don't  know what your missing out on). He was going to be doing his Road Show in a town that's about an hour and a half from here and the tickets were going on sale the next day. Thankfully for me I was out of school the next day. I got up early and waited not so patiently for the appointed time that the tickets would go on sale. At said time I signed into the proper website to get my tickets, clicking on the little tab that says "best seats available"...then I see that the "best seats available" are almost $100.00 and honestly I debated getting them for a few minutes then decided against it and opting for the next best seats which were also really good seat. We were only about 5 or 6 rows back.

Wednesday was the day of the Road Show, I could not wait. The Cable Guy took two days off work thinking I wouldn't be back in school yet for the summer session and we could go up early and spend the night and have a mini vacation. No such luck, I started school the day before... BUT we left as soon as I got out of school and spent the afternoon just hanging out, doing a little shopping before the show.

We decided we needed a snack and whats better than ice cream on a hot afternoon? Nothin' right....except maybe a snowcone. We came across a Maggie Moos and have heard great things about it so it was a sign right? I have to say all the things we heard about Maggie Moos was absolutely correct, it was amazing, and they had my absolute favorite flavor for just about anything in the world....cotton candy! Well let me just say for the record when your picking ice cream flavors somewhere new you might want to take into consideration if there are food colorings used in the process...especially when said ice cream is bright blue! Don't get me wrong it was great and tasted just like cotton candy....but I looked like smurfette when I was done!

No that's not me trying to be cool and wearing blue lipstick!

The show was amazing! I wish I had payed the extra money to get the "best seats available" it would have been more than worth it. I didn't expect him to be SO funny! The show typically only lasts an hour and a half but the night we were there it lasted about three hours. SO GOOD! He was doing another show the next night a couple hours away and we had such a good time we considered going then too and getting the expensive seats! If you like his shows and hes in your area I suggest going its well worth it.

me and the cable guy waiting for the show to start
(yes the blue finally wore off)

a few shots of the intro's running on the big screen above the stage

shots of the stage right before he came out

the only picture I got of him that wasn't fuzzy

The only thing I regret about the whole night was that I didn't stay after the show to get him to sign my book and get a picture with him. There were 1200 people there (sold out show) and I swear all 1200 were standing in line to get books signed. By this time I had been up since 7:00 that morning and it was already almost 11:00 and we had to drive and hour and a half home and I had to get up to school the next day....or so I thought...my teacher canceled class that morning. I was SO MAD! I wish I had just spent the money and got the best tickets so I could have gone to the meet-and-greet before the show.

All in all it was a great night!

Remembering Summers Past

The school year is coming to an end for alot of those around me. High school graduations are taking place and elementary school kids are counting down the days till summer officially starts for them. For some kids in the area this wont happen for a couple of more weeks because of all the snow and ice we had earlier this year. For some parents its a time of sadness because they are seeing their babies grow up, for others its a time of happiness for the same reason.

This time last year I was feeling the same mix of emotions as the Guitar Man was graduating high school.

A young mother from my church made the comment this morning that she was excited that today was her oldest sons last day of kindergarten and she couldn't wait to officially get the summer started but this afternoon she was singing another tune as she realized her little man was now a 1st grader.

When my boys were young out of school for summer break was some of the best times for me. I love being a mom and for me when they started school it was like a piece of me was missing and I couldn't wait till they got home. When school was out is when summer officially began for me. Sleeping late, watching TV, eating when we got hungry instead of on a schedule, staying up late just because we could, trips to the pool, playing in the sprinkler, chasing down the ice cream truck as it went through the neighborhood.

One of my favorite memories took place probably 6 years ago. The kids were maybe in middle school and Jr. high. It was late in the summer and in the south that means 110 degrees with a heat index of 120, humidity so high you cant even breath if you go outside, and not a rain cloud in site. But on this one day it was raining so we stayed in the house all day. I don't think any of us even got dressed that day. We found something on TV to watch, there was a TAPS marathon on so we huddled under blankets and watched the TAPS team look for ghosts all day. No fighting or arguing, and if you have kids 17 months apart you know how rare that is, just enjoying the day. That seems like such a long time ago, my baby faced little boys curled up on the couch with me enjoying a summer day...

Not alot has changed since then. The boys have continued to grow up, but I still look forward to summers with them, and we are still enjoying the same things. Sleeping in, late nights, swimming, and snow cones. OK so they don't have much time for mom any more but I'll take what I can get for as long as I can get it and I'll enjoy every second of it knowing it wont last forever because they are growing up and eventually(a long long....LONG time from now) will have families of their own. I only hope that when they do have families of their own they remember their childhood summers and try to have as much fun with their kids as they did when they were little.

But for now I'm going to enjoy them while I have them and cram as much summer fun in as I passably can.

Crazy Weather

I know for some of us living in the south we are not strangers to severe storms this time of year. I have lived in this area my entire life and I have never experienced weather like we have been having for the past 12-24 months.

 We have had snow in March, deadly tornadoes in December, and torrential rainfall that has caused flooding all through the south.

I personally have spent the past several days glued to any source of weather information I could find just to keep up with the locations of the storms and try to decide if they were going to effect my family. I am so very thankful that my family is safe, my parents had some damage a couple of nights ago from strong winds causing a trampoline to go flying but they slept right through it and were unaware of the damage until the next morning.

I see the devastation all over the news and my heart breaks for those people. Although I don't know what it feels like to go through a traumatic event like a tornado and having your home destroyed around you, I do know what it feels like to have lost everything you have because of mother nature and I know how hard it is to rebuild. At the time you are just thankful to be OK and to have your family with you and know that you are safe but when the dust settles and things return to a new normal you start to realize the little things that you have lost; pictures of your children growing up that can not be replaced, school art projects, baby blankets that were made by grandparents that have passed away. You play the "I used to have..." game or in our case "before the house flooded..."game.

The people effected by the recent flooding and tornadoes need our help right now to recover but please remember to keep them in your prayers when the clean up is done and the news crews have left because that is when they will need it the most.