Don't come here expecting to feel sorry for me - I don't.

I hope that sharing my progress and thoughts can offer some nugget of information or a point of view that can help anyone else struggling to come to terms with having MS, living with any form of MS or who lives with, supports or knows someone with it.

I’ve said before that I want to be really open about the stuff I’m dealing with, without it being the topic of discussion all the time. But, like I said when I posted on The Chronicles of Nani after my diagnosis, it’s not “why me?” it’s “why not me?” If there’s something I can do to make it easier for someone living with MS, or living with someone they love having MS, well, that’s why me!

If you or someone you know is affected by MS in any way or if you just seek to understand it, you are welcome here!

Friday, January 6, 2012

Welcme 2012

Happy New Year! I hope everyone had a safe and fun celebration last week. My husband was working until 10, so I had a quiet nigh scrapbooking until he got home and we watched Lady Gaga and the ball drop in New York. I’ve had rowdier New Year’s Eves, but after a very active Christmas, I liked the quiet night.

For me 2011 was a year of challenges and changes. My MS diagnosis was in June, but the first half of the year was the increasing inability to walk or even balance and fatigue with 3 MRIs, a CT scan and countless draws for blood work. After diagnosis there was an EEG and a couple EKGs to test me for suitable medications.

I will mention a couple things about treatments. First, read all the information you can about any medication before you take it. Have a really good idea of what the drug is supposed to do for you and what side effects might happen before you take the first dose. You have to work with your doctor and your doctor has to work with you to find the treatments that are right for you. MS is a customized disease. It’s not the same for everyone, so you have to find the right treatments and the right doctor for you. I have a neurologist, along with his team, that I am so happy with. They all listen and ask questions when I tell them what is going on with my situation. I also know that my questions will be answered. When I was concerned about what I thought might be a side effect, my neurologist called me himself to ask and answer questions.

I’m taking oral medications, Ampyra and Gilenya. As I understand it, they are just starting clinical trials of Gilenya for Primary Progressive MS, but my doctor said I had some swelling like there is with RRMS in my MRIs and we tried it. I hope and pray that the trials show similar results in other PPMS patients as I’ve had! The incredible fatigue I’d felt all year was gone by the end of the first week on Gilenya. I got to truly enjoy the holidays in 2011 because I had my old energy level back.

Therapy exercises seem to be helping me strengthen and get my leg muscles helping me balance better. I still use a walker for short distances, like a stop at the drugstore or the bank, and a wheelchair for longer distances or recreational outings, like sporting events or going out to dinner. I have a really great support system at home. My husband and I communicate well in understanding the areas where I need help and the areas where I psychologically need to at least be able to try to do things on my own.

I really suppose I could write a book about my personal MS situation, so I could easily write one very long post introducing myself, but I welcome any questions you have about me and my MS, because everyone’s is different, and I’ll answer them. Right now I’m working on ways to make our 1950’s Colonial more user-friendly for me. I figure there will be things we do in the next house we live in ahead of time, but for now, I just need it to be a little easier.

In the next couple of months I’ll be posting photos and telling about things I use to make life easier and decisions I’ve made. It still comes down to an easy choice. This disease is not fatal but it will be with me the rest of my life. I can be frustrated and depressed all the time or I can adapt and enjoy my world. It’s not that I never get frustrated, but I choose to shake off the frustration and be happy.

1 comment:

Debbie said...

i'm on tysabri nani, i don't know if i told you that. i have recieved 50 infusions after failing on everything else.

keep us posted on gilenya, i hope it treats you well!!