Holidays

It's been a while since I posted anything here. Life's taken on a "life" of it's own. Got too busy trying to keep up to be able to slow down enough to sit and reflect. Well....I just got done dealing with thanksgiving. This is my first one without Kevin and the kids. Surprisingly, it went well. I ate dinner with my best friend and her family. It was low key. We got dinner prepped and cooking then decided to take a nap. Dinner went well. It was a typical turkey, stuffing, mash potatoe, green bean casserole spread. Of course pumpkin pie for dessert. We decided to go out and enjoy some single gals only time after dinner. So, we danced off the calories from dinner. It was fun E, B, and I just hangin and catchin up on the latest with one another. The band and the music in between was well worth the drive out to our spot. It was a great ending to a relaxed and low key thanksgiving. I did miss the deep fried turkey and sweet potatoe pie I've gotten in the past at the in-laws. Did get that sent home to me from left overs. So, really I didn't completely miss it. I enjoyed another thanksgiving celebration with meatloaf, roasted veggies and baked sweet potatoe the day after with some friends with MS. It was nice. I could be and talk about the MS without feeling like a subject of someone's pity. It was so comforting to be understood and be around with others who get it without having to explain. That was a nice reprive from the typical celebrations. As I look back and think about my hopes and expectations for the holidays I realized I had no expectations and hopes because I didn't want to be disappointed or hurt. I did contemplate spending the holidays with the ex and the in-laws cause a part of me really wasn't ready for holidays as a single woman. In retrospect I'm glad I fought that urge. It was a great way to show the ex that I have moved forward and that my life is going on without him just fine. Now...I'm tryin to close that door of being married and with him and open the new doors of new people in my life. New friendships and new ways to enjoy my time!!!!

friendships

I wasn't goin to blog about my day since not too much exciting happened but, nevertheless I know life w/ MS isn't always going to be exciting. When the days are just typical those I also consider victories cause life w/ MS isn't ever typical. So, my day was full. I've finally got the energy back that I'm used to having. Figured out how to deal w/ the pain and now trying to stay active so the fatique will not be an issue. Use it or loose it as the saying goes. I went to a conference where a Neuro felt that the more active the lifestyle the less challenges one will have w/ fatique. So, testing out that theory. Had a great visit w/ my Physiatrist (PT w/ a medical degree). She and I came up w/ a plan for dealing w/ the excruciating and debilitating pain that is the most recent symptom to tackle w. the MS. Since it was sunny out and I had energy I decided to pick up my daughter from school and offer to go for a walk w/ her. She wasn't up for the walk so we went to a visit a friend instead. That was nice. To catch up w/ my friend who I've missed and haven't been able to visit due to the fatique and pain. Then got to pick up my son from school and allowed him time to play in the playground which he doesn't get to do anymore because I usually am not well enough to be there. So, his mode of transportation is the school bus which leaves right after school. Needless to say I wore myself out before I knew it and wasn't able to make an info. meeting I had wanted to attend this evening. No worries. Can get all that info in the mail. Rested up and made dinner for the kids and spent some time listening to music and reading. So, then I get a second burst of energy and decide to go out for a late nite meal with a friend. Wow!!! Was I glad I did that. I had so much to say and just vent about and get off my chest that I feel lighter now after that visit. I think this new friend will be a positive influence and the male influence and perspective I've been hoping for. Totally platonic but, very supportive. So, I'm excited and looking forward to tomorrow.

Romance

The hardest part of these past 2 years with MS has been doing it alone. Eventhough my husband had asked for out on our marriage before the diagnosis he decided to stay when we found out about the MS. He asked me, "what do you want from me?" I said I needed him there for the kids. He did that. Amazingly and successfully. What I really wanted to say was, "I need you to fight for this marriage so I have someone to go thru this with!" I wanted to scream that. I didn't. I was afraid to be disappointed. I was afraid to want what he couldn't give. That is the one conversation I wish I could do over. The one part in dealing with the reality of MS I wish I could take back. Would it have worked even if I did have the guts to say that? I don't know. Honestly he stayed around for as long as he could stand I think only to lessen his guilt. To not be thought of as the jerk who walked out on his wife when she needed him the most. And even when he was around he couldn't be bothered by the MS. He couldn't be bothered to stay around during the ER visit to give me a ride home. Work was more important. After all who was going to pay for the ER bill he said. I don't know. Do I want to do that conversation over thinking I'd be in a different spot now if I had said what I needed to? Maybe. Do I really believe GOD can't undo that mistake on my part if that was part of the plan? I know HE can. I just don't know if it's part of the plan. The challenge in having a faith is trusting that HE knows best and HE will reveal the plan @ the time when I can handle the reality. I know the reality I want....to not be alone!!! To have a partner on my side thru all this. Yet, did HE close one door only to open another? Or is that door closed temporarily only to be opened later when the molding is done? I read a saying once that basically says that when we search for answers we have to be ok that @ the end of the search we don't get an answer. That the answer will come only when we're able and ready to accept it. But that ultimately we have to be ok with not knowing the answers to all our questions. This is my reality. To be ok with not knowing the answer to, " will I be battling MS on my own?"

Mortality

When we take the time to think of our mortality do our priorities change? Do we have a clearer view of what's important? Do we start living differently? I don't know. Ever since I was diagnosed with MS I've been renavigating and negotiating a new perspective. I've learned to care less about what people think and just live every moment to it's fullest. I've learned to live outside of the box. I've learned that being always "good" isn't really living. So, then I realized that my life won't necessarily end sooner because I have an incurable disease but, that the quality of the life I may be living in the future may not be so great. So...what do I do with that reality? There's a part of me that wants to push it out of my mind until I have to deal with. To not borrow trouble before it's here. That part of me also reminds me to enjoy the good days to it's fullest when they're here and don't allow the bad days to win. Then I look @ my kids. I'm amazed!!! I'm blessed to have been able to be part of two lives who've enriched me so much more than I realized. Then I get to thinking....is it selfish to want to continue to reproduce even now knowing I may be passing on this disease? Is that kind of thinking borrowing trouble before it's here?

Overview

I'm a 37 yrs old single mom diagnosed with Multiple Sclerosis (MS) in August 2007. Shortly after my diagnosis my husband and I decided to separate. The marriage had been on a slow decline to the end. We've been married 12 years and have 2 kids. Shortly after my diagnosis my body decided to progressively shut down. I lost my job and a lot of other activities that marked my days as an active individual. The first disease modifying drug I tried for Multiple Sclerosis did lessen the exacerbations but, not without side effects that affected my daily life. So, here I am 2 years into the disease and have found a medical drug that is helping more than it's harming. I am a devout Christian whose faith has seriously been tested during this whole ordeal. I've asked myself many times why GOD thinks I'm strong enough to turn 35 and see the end of my marriage and be diagnosed with an autoimmune disease that's incurable. I haven't heard back from the big guy the answer on that yet. Life continues on with me and my 2 amazing kids. I have found out who are my true friends thru this whole ordeal. I have learned new limitations in certain friendships I didn't realize were there. I have gained a support circle that I know is truly GOD sent. Now...I'm at a cross roads in my life. How do I become financially independent when I can't physically work? How then do I provide for my kids? My picture of my future isn't what it was. What do I do with that? Having a challenging time creating a new picture and vision for my future. So....here I am....daily asking myself, "what can your body handle today?"