I Think I Gave Up....

My husband bought me the book, "The Fault in Our Stars" by John Green for Christmas. It is a fictional account from the point of view of a teenager dealing with terminal cancer. I wasn't sure how I was going to like it but I wanted to give it a shot because the book jacket information was interesting. Turns out, it is funny and tragic and wonderful in a lot of ways. You don't really expect a fictional book to teach you things about yourself but this one did. I came to the conclusion that I think I gave up after I was diagnosed with MS. Maybe not right away, but eventually I think I felt like I had no chance of getting better or living a happy, pain-free life anymore. This was made much worse by the terrible exacerbation I experienced in March 2013. I was basically forced (by me) to quit singing at my church as it was ending up to be a ton of stress that nobody really cared about but me. Several people said they would help, but didn't. I had to go through three days of steroid infusions followed by about a month of steroids to taper down. Suffice it to say, this is not fun. Feel free to look up the potential side effects of steroids if you don't believe me. I get most of them.

There is a line in the book that really stuck out to me, "My final chapter was written upon diagnosis". I really think I felt like this when I was diagnosed. I thought, well, there we have it. I am going to slowly deteriorate until I meet a very painful end, likely caused by no longer being able to breathe. Or something like that. But I realized, that may be my ending. But it might not too. With regards to the multiple sclerosis (they are scary words, yes?), I am very much on the mild end of the spectrum. Looking at me, you would never be able to tell as I am fully mobile and require no walking assistance devices. Talking to me, hopefully you would be able to tell that I am educated well, though I do tend to mix words up sometimes and have difficulty coming up with words as well, at times. You may even find spelling or grammatical errors in this post. I am fatigued much of the time, but it is relatively easy to cope with as long as I give myself time.

I'll admit, some of the projects that I would like to get completed are a bit scary to think about at this time. But it is stuff that I am fully capable of - painting, pulling up carpet, etc. It's scary because I have always been so independent. Now I am forced to rely on others to help me do what I cannot. It takes me a long time to clean the house, because I get tired easily. But I CAN do it.

So, my goal this year is to focus on being a healthier version of me. Eating less and more healthy. Moving more and getting more stuff done instead of vegging. Making sure my husband knows how very much I value him and his love (more than anything). What I am less focused on is what everyone else thinks I should or should not be doing. I have set strict limits and boundaries on myself to avoid becoming over-stressed. These have been and are working in my favor and today I feel better than I have in a long time. But these boundaries must be kept in place because people will take advantage if given the chance (sadly enough).  

I will not allow MS to write the final chapter in my life. It is a poor writer after all, only showing the bad and none of the good. Instead, I will continue to write my current chapters and leave that last one unwritten until it arrives.

Almost a new year

Usually I do a year end review but those tend to track what horrible things my health has done to me lately. So, I will refrain and just post a little recap. Obviously I still have MS, and PCOS, and a wonderful husband (thankfully) and crafty hobbies. I am still overweight, worse now than ever, but hopefully that can still change. I am still able to work, which I think is a good thing for the most part.

I have had the idea of not weighing myself for an entire year. Trying to make healthy choices and exercise more, and not be defined by a number. I figure I can just close my eyes at the doc appts. and tell them what I am doing and why. Then on December 31st of 2014, I can weigh myself and see what happened over a year. I will know if changes are happening because my clothing will change but I won't have to obsess over a number changing. I think it could be cool. Trying to figure out a program to help with this that doesn't require you to put your weight in could be a little more difficult. I could always get on the scale, and have hubby change the numbers. But I think it would be too tempting to look. And I know what is a good choice and a bad choice when it comes to foods. So it will require me to weed out more bad choices which would be a good thing for me. We'll see, not sure if it will happen, but I have been kicking it around a little.

I am hoping that the new year will be a bit easier on me health wise than this year was. I had a bad relapse in March and the steroids with that are never fun.  I have been very good about taking my shot and medicine every day so that should help keep me on the straight and narrow.

Six Years!

Yesterday was my and Steve's six year anniversary. Hard to believe that it has already been six years in some respects, but then it feels much longer in others (in a good way). It feels as if we have always been together and the time before we were together was more of a story that I read at some point and remember vaguely. While he is in no way perfect (me either), he tries, which is more than I can say for most husbands out there. He doesn't try to be perfect, but he tries to give me what I need. Unfortunately for him, that seems to change on a daily basis! But he keeps trying and keeps communicating - which is really what I actually need.

We had a good weekend together, mostly spending time together going out to eat. But it was very enjoyable and gave us time to reconnect. We also began reading The Ocean at the End of the Lane by Neil Gaiman out loud to each other. If you have never read out loud to your spouse or had him read to you, you are really missing out! It allows the imagination to really take off like listening to a book on tape does. You don't have to focus where you are on a page and can just let your imagination run wild. All around fabulous!

Otherwise, not much going on in our world. I haven't had the time, the clean space, or the motivation to do much crafting lately. I have some fabric to make kitchen curtains and need to find the time soon to do that. I think the old ones, covered in a thick layer of cat hair shall be going in the trashcan. I have also been working on a baby gift for my new niece/nephew that will be arriving next year. It's looking good and I think I will have time to get it all done before baby arrives.

So, six years down, another sixty to go! :)

Today...

Gotta start someday why not today?
Gotta start some time why not now?!

Here goes nothing!

Motivated?

Like most Mondays it seems, I am feeling motivated to lose weight again. I simply hate how I look, my face is so round and boyish with my short hair cut. I am heavier now than I have ever been in my entire life. I am scared to step on the scale because I really don't know if I can handle the number that it shows me. But on the other hand, I need to know where I am beginning too. I am not a good influence or example for my clients that want to lose weight. Makes me pretty hypocritical to tell them how to lose weight when I am obviously very overweight myself. It felt terrible when a client pointed this out to me. I appreciated the honesty but wow, that brought me down to earth for sure. Since completing my relapse treatment, I have been more active, but compared to what I was doing, that doesn't say much. During the relapse, I didn't do anything because I was so exhausted. I think it became a bit of a habit almost. So, now I am trying to get more stuff done but it just feels hopeless and pointless. I have to mow the yard today so I am forced into exercise. That is not such a bad thing for me. I need to weed my flower garden areas as well but I am scared to kneel for fear that I won't be able to get back up. Will just have to try and go from there.

Why I Stopped Singing

If you are a part of my life, no doubt you know that I sing and I love to sing. For the past three and a half years, I have been part of the worship team at my church. For the past two years I have been leading the worship team for Saturday nights. What I thought this meant is choosing songs and generally just keeping everyone on track. What it really meant was learning how to run a sound board with no previous experience, understanding lighting and trying to configure it to make everyone happy (impossible), dealing with people constantly showing up late (therefore making practice run late), trying to work with several different people's scheduled absences and still have a full band, rarely getting to take a night off, constantly trying to keep the music sets from becoming stale, and never feeling like I got to be able to worship because I was so busy trying to make it the "right" atmosphere for the congregation to worship.

People often ask me why I didn't enter into music professionally or become a voice teacher or something like that. I briefly thought about being a music education teacher while I was in college but realized that if I tried to teach people (children especially) something that comes so easily and naturally to me, I would end up hating it. I don't know if that is what is happening now, but it sure feels like it. I still love to sing, but no longer feel the desire to ever perform, maybe ever again. It saddens me, but honestly, I love to sing because I enjoy music, not because I enjoy the response of people. I am much happier singing to the radio in my truck than I have ever been performing in front of people. For some reason, it seems that people think that I (and I know other musicians have experienced this too) should offer up my talents just for the heck of it. Well, it is time consuming, stressful, and requires a lot of logistics to figure out. If your neighbor was a dentist, would you expect him to fill your cavities for free? I hope not. But, people expect that I can and will offer up my voice to whatever it is that they want, a wedding, funeral, special service, whatever without any type of compensation.

Okay, so I sound really bitter. I'm not really, just frustrated that no one understands. And believe me, it's not about the money or lack thereof. Though honestly, during the months that my husband was laid off and now paying into COBRA for insurance that I cannot go without, it would have been extremely helpful. But I never had time to get anything done that I wanted to get done. I missed a lot of family and friend events, Christmases, birthdays, weddings (lots of weddings) because I had committed to something and I take my commitments seriously.

My multiple sclerosis has also been a factor of my decision. I was diagnosed in 2011 and have had a lot of ups and downs with it. For the last 6-9 months, I have felt exhausted, beyond exhausted and could barely keep my head up with the stress of working a full time (mentally exhausting) job, the band, and all of my other commitments. I had surgery in December to have my gallbladder removed. That helped some with the constant illness related to my digestion. However, the exhaustion continued. Finally last month, my doctor ordered an MRI and blood work. My blood work came back fine but my MRI showed three active lesions on my brain. I completed two days of a steroid infusion and 21 days of a steroid taper pack. I finally feel like me again though I am still dealing with the after effects of the steroids (weight gain, dry scaly skin etc.).

So right now, I am enjoying my freedom, getting things done around my house, spending time with my husband and family, and all around enjoying life. I have been able to sleep and make it to work on time. I have been able to attend family functions on the weekends. I don't know when or if I will return to singing, but I don't miss it yet. I don't know when I am going to start missing it. Maybe never. Just have to see what the future holds and how God guides me regarding this.

Snowing, snowing, snowing....

It has been snowing on and off since last Thursday (almost a week now, wow!). I love it, I think it is so pretty. The roads aren't horrible but they aren't much fun either. It's hard to believe that it is almost March already. I swear, it feels like Christmas was yesterday and it will be here tomorrow again! Time is really moving. To update on the things doing on currently:

My beautiful niece was born in January on the 19th early in the morning. She is very precious and is growing and doing well. My nephew is doing well and enjoying his little sister.

Last Sunday was the one year anniversary of losing my Grandpa Dale. It's still a hard loss but gets easier with time. I wanted to go out to his grave and put some flowers on it but the snow is so bad right now that it will have to wait until it gets nicer out.

I have been feeling much better since getting my gall bladder out. It has helped a lot with not getting sick after I eat. My digestive system still sucks pretty bad but is better than it has been in the past at least. My MS appears to be stable at this point so that is good.

Other than that, I have junk going on in my brain that I am not ready to "put on paper" yet. The basic theme is that I feel like a dancing monkey people feel like they can throw a quarter in and get me to do whatever they want. Somedays I wish I couldn't sing, sure would take a load of crap off my plate. *sigh*