Five Years

I had another MRI and a follow-up appointment. The results were good. I had no new lesions and no active lesions. Woohoo! It looks like I am responding well to the new medicine. I had some blood work done to check my white blood cell count. My white blood cell count and other lab work looked good. My vitamin D is still lower than what my doctor wants, so I am going to take prescription vitamin D for 3 months. If everything continues to go well, I go back in 6 months. I received the call about my MRI on my birthday. It was great to have such good news on an already great day!

Five years ago last week I was diagnosed with MS. I remember being in the office actually thinking that the doctor was going to tell me it was not MS. I was shocked when he said it was MS. I was shocked but also relieved to know what was going on with me. There is so much information out there and still a lot of things that are not known about MS. It behaves differently with everyone so it is impossible to predict what MS will do in each person's life. They said it was good that I was diagnosed young and that I am a woman. They said that usually people like me are still walking 10 years out. I couldn't decide if this was reassuring or not. On one hand, I can look at it that it doesn't immediately put you in a wheelchair just because you have MS. On the other hand, I started thinking only 10 years? These first five years have gone by very quickly. I try to remind myself that not everyone with MS loses the ability to walk or loses their vision or the other things on the list. It could also happen to me tomorrow. I could get hit by a bus, too. Only God knows the number of my days and how I will live them. I am praying that I keep my focus on Him and not the MS. I am so thankful that I have God in my life. I also remember five years ago feeling a peace that could only come from Him. This diagnosis didn't ruin my life. I still have an amazing life! Five years and still trusting in Him. :)

New Meds

I decided to take the advice of my doctor and change my MS medicine. It took a little while for the insurance to approve it and for the meds to arrive. I was able to start last Sunday. It is a pill that I take twice daily. For the first seven days it is a starter pack with a half dose in each pill. There are some side effects that include stomach problems. The nurse told me to take the pill with a full meal and not just a small snack and that should help with those. So far, I haven't experienced any stomach issues. Hopefully that will continue when I start the full dose. The only side effect I have noticed is some flushing that lasted a few minutes.

I have to tell you that I don't miss the injections. I am having to figure out how to plan my breakfast and supper for around 12 hours apart. The medicine works best when I take it at 12 hours, but the nurse did tell me I can have an hour before and after, too. So if I have breakfast at 7 with my pill, I need to take my next one between 6-8. It's not difficult. It just makes me think more about meals than I usually do. 

I have my follow up MRI and doctors appointment scheduled for November. Hopefully, my doctor will be able to get some good information from my MRI to see if this new medicine is working. Regardless of what we find out we will just take it one day at a time. We are doing our best to pray more and worry less. It is hard on this planner, list maker, not always the most patient, type person to think about the what ifs with this crazy disease and not worry. But I'll keep on trying. :)

New MS Update

I haven't posted in a long time. Several reasons really. Busy with kids, not much to report, and just being in an overall funk with the blogging, not knowing what to write and no pictures. However, I have been to see my neurologist and there have been changes. I went to see him because I have been having a weird sensation in my throat. It's hard to explain. It had been 10 months since my last MRI, which was stable, and he ordered a new one and some lab work. My labs came back good except for my Vit D is low. I'm going to be taking extra to fix that.

My MRI came back with new lesions and one that was active. The doctor is sending me to get IV steroid infusions for 5 days, repeat MRI in 4 months with a follow up visit, and he is mailing me information on switching my MS meds. My current MS medicine is a daily injection. The new one would be a twice daily pill. I would like that part of the change.

The infusions are interesting. I am going to an infusion center because they don't do it in the doctor's office anymore. I have finished with 2 of the treatments so far. They don't do my kind of treatment on Sunday, so my other 3 start Monday.

Here I am day one. The room looks like a regular hospital room. My visit was about an hour and a half. My medicine took about an hour.

I think when they take off all that tape it hurts worse than the stick!

When I get the steroid infusions I get a strong metal taste in my mouth. Hard candy helps. I forgot that water does not help. But the book did with making the time go by faster.

Here's my wrap for day 1. It has purple hearts that matched my shirt. :)

Here I am day 2. Not sure if you can tell but my face gets flush with these treatments, too. It is very flattering. Haha! I got to take my hubby with me this time. He got off work early. We chatted and played a trivia game on my phone.

 Here's my wrap for day 2. Green for my green shirt. My nurse is keeping me stylish!

3 more treatments to go. They can make me a bit moody. I haven't noticed it too bad so far. I joke around that I could Hulk out any minute. This isn't the best news, but it could be worse. I am still feeling pretty good. I'll keep you posted on more changes.

MS Walk 2013

We had a great walk this year. The weather was nice. Not too hot and it didn't rain on us. It felt like there were more people this year, but we were also closer to the front of the group this year. Here is my awesome team.

They had lots of booths set up to visit. They had Krispy Kreme donuts, a guy flipping pancakes, bounce houses, a magic man, face painting, to name some of the things.

Magic Man

Donuts!

Face Painting

A new thing this year was signs to share your reason for walking the MS walk. I thought it was very cute idea. 

They also had some mascots, a dance team, local tv anchors, and a dj. These mascot people were so funny. They would try to sneak up behind people. They ran around like crazy. It was really amusing. 

My favorite part is walking with my loved ones. I love any reason for us to get together. We had an amazing group this year. We were also missing some important people, but I know they would be there if they could. 

I have so much support from my family and friends. I can't imagine life without any of them. This year's walk was amazing and I can't wait to do it again next year.

MS Awareness

March is MS Awareness month. Thought I would give you some info on multiple sclerosis that I got from the National MS Society website. Here is the definition from the National MS Society:

 Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. 


MS is not contagious. It does not always cause paralysis. Two-thirds of people with MS remain able to walk although some require an aid. (I don't need one now, but have kept my eye out for cool looking canes just in case.)

The cause of MS is unknown. There is also no cure for MS. There are medicines to try to manage the symptoms and ongoing research to find a cure.

Just a couple of things to share with you. Have a blessed day!

Good News

I received a message while I was at work from my doctor's office. It was a short and sweet message. The nurse said that I have no new lesions and the MRI looked stable. Woohoo!! Praise God! Thanks again for all of your prayers.

Follow-Up Appointment

I had a follow-up appointment with my neurologist yesterday. It had been about 7 months since my last one. First of all, how long do you wait in the exam room until you poke your head out and make sure they haven't forgotten you? 20 min? 30? I decided to just wait it out. Doc came in and after a brief exam, he thinks I am still doing well. He wants me to continue what I am doing. He did order an MRI because it has been over a year since my last one. If that one comes back ok, then I don't have to see him again for a year. I can come back sooner if there are any issues, but he thought everything is looking pretty good. I am feeling relieved to have that part of it finished. I am still going to be a little nervous until my MRI results come back. I'm not extremely patient or good with the unknown. (Working on getting better.) I will post another update in a week or so after I hear about the results. Thanks for the prayers!

MS Walk 2012

The day for the MS walk was very nice. The temperature was pleasant and it didn't rain. It was very nice. They moved the walk to the Louisville Cardinal Stadium. We went early because they were going to have kid activities. Here is a table where the kids played with bubbles and made some pictures.

They also had some bounce houses. Krispy Kreme was there with doughnuts. They had fresh chocolate to dip them in and sprinkles. My wonderful hubby got to join us this year. I was very excited he was able to come.

Our group was a little smaller this year, but it was still a fabulous group. We missed the others and I know they would have been with us if they could. I really appreciate EVERYONE who supports and encourages me. I hope one day to have a big group like some of the others, but I know schedules are crazy. It is hard to  get together.

And if you look closely at that picture above, you will notice my son using his baby cousin as a drink holder. (Sigh) Inside the stadium they had some races for kids, and some grown-ups, on the 40 yard line.

The walk is supposed to be 3 miles, but it didn't seem that far. Maybe it was because I did 13.1 miles a couple of weeks ago.... :) Here is my Little Bit with her cousin. He calls her "my Katie". So super cute!

Here we are at the end. The sun is in our eyes and we are headed to lunch. Our Krispy Kreme doughnuts had worn off and we were pretty hungry! Thanks for all the support.

Medicine

It has been over 3 years since I was diagnosed with MS. I have been taking injections that long, too. I haven't had any skin reactions so far. Except the other day, when I tried to push in the medicine it wouldn't work. I just couldn't make it go in. It was weird. I have also been having trouble remembering if I took my medicine or not. So, I am starting something new. I am going to try and mark on the medicine the date I am supposed to take it. That way if I cannot remember I can look at the date. Hopefully that will work. My other medicine that I take to help with my fatigue, I am still thinking of how I can remember that better. I have tried little pill reminders. Maybe I just need to find a good spot to put them... Still working on it. They have introduced a pill you can take for MS but I haven't asked the doctor about it yet. It is very new. I think I will wait a bit and do more research on it first. What I am on is working so I'll probably stick with it for as long as I can.

Follow Up Appointment February 2012

I had a follow-up appointment with my neurologist yesterday. My wonderful husband was able to go with me. They had moved to a new building again so I was glad that he was there to help me find it. I did not have a MRI scheduled with this visit because my last one looked good. So, the results of my follow-up? The doc thinks I am doing well. He said just come back 6 months, keep doing what you are doing and we won't schedule another MRI for next time either. Woohoo for good news. This is a short post because I am getting the kids ready for school but I wanted to share. :)