Well, to start my post. I will start with this. The happiest and best day of my life, marrying my best friend and the love of my life. It's hard to believe that already nearly two weeks have gone by. June 17 will mark a year of us being together. Some may have a difficult time understanding why we decided to get married after not even a year of being together. I suppose from the outside looking in, that would be a very difficult thing to understand. And, unfortunately there isn't a simple and clear-cut answer to that question. I guess I would put it this way, when you know something, you just know it. Words fail me often, though I love to write and cling to words in order to describe my experiences. But before meeting Justin, I did not know if I would ever find someone. Honestly, with my disease process part of me felt like I might just be better off alone. But God had other plans for me, and I'm so glad He did. There really is nothing like marrying your best friend. Saturday April 25, 2015 began a marriage, a life shared, and a family all at the same time. And I couldn't be happier.
The wedding itself was beautiful. If you know me, you know that dressing like a girl (wearing dresses and skirts and the like) really isn't my thing. After Prom, really the only time you get that "dolled up" again is on your wedding day. People say all the time that weddings are stressful on a bride. Well, I won't say the wedding was without stress completely. However, I will say that largely it was. My friends Leslie and Deb worked behind the scenes (Deb even had to sew my cousin Aimee into her bridesmaid's dress) to make sure things went smoothly and if something went awry I was either unaware of it or by the time I was aware of it, the issue was taken care of. My Sidekick (Karin), was my personal attendant and made sure everything went according to plan, that I took my medications on time, got plenty of water and some food, and was able to maintain a fairly calm demeanor. Not something easily done, as I do tend to get a bit anxious. But, let me tell you, having wedding minions (OK, so they weren't minions really, but I like the term and concept so I'm just going to go with it) made everything so much easier and ultimately reduced my stress level significantly. That's how you get married. Really though.
Even more miraculous though, was that for the most part, Mito left me alone for a whole day. I had no seizures. I was tired, but I still danced the night away anyway. And the best part- I didn't crash. God gave me a miracle that day- the ability to live without the constant reminder of being a person afflicted by a Mitochondrial disorder. I will say it was a short reprieve, but what a blessing God gave to me. The ability to forget- even for a minute- that you have a chronic, life threatening, and life limiting disease is such an extraordinary gift and a blessing I wasn't sure I'd ever experience. But I asked God for it. I pleaded to God to give Justin and I- and our families- this one day where things weren't completely messed up and dysfunctional. He answered my prayers. This was a day where Justin and I combined our families but also started to create our own. And as much as the anticipation of the day was so thrilling, the even better part is this- I get to spend the rest of my life with this wonderful man. No one knows the blessing of that. Justin is truly the best thing that has ever happened to me. In my wildest dreams I could never have anticipated that God would bless me so richly. But he did. I do not deserve the blessing He gives to me, but He does it anyway. To me, that is just astounding.
Mito, well....Mito continues it's influence in my life, refusing to be ignored for long. Just when I think I am doing OK, I have a day where I get a little too ambitious and then I crash hard the next day. It's never fair, and I always get upset about it. There are no words to describe how it feels when your body fails you over and over again. And there's not a way to really "get used to it." Sure, you might realize that you have to listen to your body, but Mito constantly changes the game for me. I am never sure what my exact baseline is, as it's constantly changing. A good portion of the reasoning for that is because I have been of my Mito cocktail for over four months now. This precipitated my drastic decline at the end of January, and I'm still working on coming back from that. Right now, I am focusing more on learning to live with the afflictions Mito presents to me, to adapt to my reality rather than fight against it. Perhaps just trying to understand my body and just letting it do what it does is the best decision. No part of that is simple, and no part of that will be easily done. I have had a lot of time to think and pray about the life I want for myself and my family. Ultimately I have decided not to let Mito define my life. It has already done far too much of that. Similarly, I do not have the energy to waste on people who are not worth my time, who continually bring negativity and ignorance into my life. God knows I've been exposed to far too much of that already. But how does one go about changing their life? None of that is simple either.
I have made the needed changes to my Advance Directive. Never a simple or easy process. However, it was very much something that was necessary. Today I have my monthly appointment with my PCP and I am a little anxious as to how that is going to go, but I have faith that God will guide myself, Justin, and my doctor on what is best. Changing physicians was one of the most difficult decisions I had to make, but it was not really a choice anymore. My former PCP was having a very difficult time because he had no idea what to do for me anymore, and I could see the frustration in his face when he would tell me these things. Emotions played far too much of a part in things in both parties. But I am forever grateful to him for giving me such attentive care for the past year. Things with my new PCP are very different, in both good and bad ways. We are still working on getting used to each other, trying to figure things out, and trying to navigate through the hell that is Mito. She is very willing to do research and learn more, which I am incredibly grateful for. If I don't feel right about something after an appointment, more often than not I tell her and we discuss it afterward, which is something not very many doctors are willing to put forth the time and effort to do. I am doing my best to trust her, which is not a very easy thing to do. Doctors have really hurt me deeply in the past by dismissing my symptoms and my disease which is incredibly distressing and heartbreaking. There are things that are working in this relationship, and we are really doing our best to work out the kinks.
One of the most exciting things that has happened this week- my beautiful niece Lorelai Rose was born on May 13 weighing 6 pounds 0.7 ounces and measuring 20 inches long. My best friend Sarah dealt with an incredibly long labor, and was a trooper throughout the entire thing. Lorelai will be coming home from the hospital today with her mommy and daddy. I am so proud of both Sarah and Marshall and know they will be wonderful parents. I'm also incredibly excited to have another niece to love on and spoil.
That's all I will post for now. I'm sure more posts will come to fruition in the near future. Things are crazy busy but I am loving life. I am back to work and adjusting to what comes with that. Please pray that this continues to go as well as humanly possible.
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