Something happened that I wanted to share with everyone. It may seem to everyone who reads my blog and my statuses on facebook that I do nothing but bitch. I really don't mean it to come out that way. Life with mito is hard. This blog chronicles just that.. my life with mito. As my "about me" section says, "this is my outlet for all of the trials and tribulations my illness has brought me." After all, there are many more trials and tribulations than comfort and happiness.
However, as time passes I learn how to live with this disease as well as accept the life that I am stuck with living because of it. Because of that, the "bitching" isn't near as bad as it was when this all started 3 years ago. I have also been able to appreciate the few advantages to having mitochondrial disease, as few as there may be. The biggest one being that I am there for my daughters more often... primarily when they get home from school everyday.
One of the other things that I appreciate is how wonderful of a husband I have. I could not have asked for a better husband to stick with me through all of this. I try to thank him every day at least once. I don't know what I would do without him. Seriously... I'd be ROYALLY screwed!!! He's such a great husband and father. We have always been the type of couple who splits the duties (cleaning, laundry, taking care of the kids, etc.) 50/50. When I got sick, he stepped up to the plate to do everything that needs to be done... no questions asked, no complaints, no bitching, no moaning. Very rarely do I hear him complain about anything. If he does complain, it's not about the things he has to do, it's about his back hurting, being tired, or our teenager, well, being a teenager.
Like I said before, I try to make sure to thank him as often as possible. Every birthday, xmas, father's day, etc. I give him a card and tell him how awesome he is. So, he should know how much I appreciate him. However, that's just me. He doesn't hear from others how incredible of a job he does.... until now.
Last week my husband got a phone call from someone at a bank. She said that he had won an award that someone had nominated him for and he needed to call her back to make arrangements to pick up his prize. We both looked at each other strangely, both wondering if it was a prank or some sort of trick to get him to buy something. (We'll give you 3 free nights in Hawaii as a prize, but you have to pay for the first 10.) He called the person back who proceeded to prove us wrong. She said that a friend of his, who shall remain nameless even though we know who it is because he wanted it that way, nominated him for this award. If she gave more details of the "contest" or award my husband didn't pass that information on to me. This friend had written a short essay describing why my husband should win this prize and they picked him!
This was all SOOO awesome to begin with. Of course, the prize itself added to how cool it was. But, the best part of all was what his friend wrote on the nomination form (they let him have a copy of it when he picked up his prize). I want to share with everyone what was on the nomination form. I am SO proud of my husband. However, I am always proud of him and I recognize on a daily basis how incredible he is. The fact that someone else recognized how incredible he is made me happy on so many levels.
Here is what he wrote...
Chris is an extremely hard working man that spends almost every waking moment putting forth the effort to provide for his family. A few years ago his wife became very ill. To make ends meet, Chris works long hours as a warehouse manager and he does odd jobs for extra money including computer repair and handyman jobs. He has two beautiful daughters and a wife, whom he loves very much. He makes all of the dinners, helps with homework, does the laundry and housework. The most amazing thing is I have never heard him complain. He is the type of man you are proud to call your friend. He doesn't deserve the hand he's been dealt in life but he's playing his cards the best he can. He spreads joy by being an inspiration of what kind of person we could all aspire to be.
______
I couldn't have said it better myself. Thank you.
This is my journal documenting my journey (and many frustrations) through life and it's many changes. I was recently diagnosed with Mitochondrial Disease and POTS, which has changed my life drastically. This is my output for all of the many trials and tribulations my illness has brought me.
Sunday, February 3, 2013
Friday, February 1, 2013
I Love Roller Coasters, but...
...this isn't what I have in mind when I'm thinking about riding a roller coaster.
Last week was the week from hell. I don't think I've had a week that bad since I got sick. It was just a combination of physical, mental, and emotional issues that made it such a bad week. Now, this week has been one of the best weeks I've had since I got sick. Crazy!!!
I have felt pretty good this week. The only thing that's bothered me is my pain. But my pain is always worse when I have more energy because I do more. The week started with a beautiful day - temp. in the low 70's and sunny. We had the windows and doors open in our house. That was awesome! The end of the week (now) consists of temperatures in the single digits. That really screws me up physically if I have to get out of the house. But it didn't affect me too much, despite getting out in the cold yesterday to have lunch with a friend. I have had a smile on my face most of the week. If I felt this way all the time, I'd be okay with this stupid mito thing.
It's also been a great week because I've had some good news and/or had some things happen to lift my spirits. First of all, I am going to get some permanent help. My parents (dad and step-mom) are hiring someone they know (well, they know her dad) to work as my slave... er.. uh... helper one day a week. She'll be here whether I'm sick or not. If I'm sick, which is about every other week recently, I'll have someone to take care of me and the girls when they get home. If I'm not sick, I'll have someone to help catch us up on laundry, cleaning, etc. That way, my girls can maybe spend some quality time with their dad. I was so happy when they told me they were going to do that, it just about brought me to tears. I was/am SO happy to have the help, but I was near tears because they made that decision completely on their own. I didn't ask them to do that. It means a LOT to me.
I have also scheduled a meeting with a local cake baker/designer who is a friend of a friend. I'm going to try to learn some new techniques and maybe ask her if she needs an assistant decorator every now and then.
My lunch with a friend yesterday was actually half pleasure, half business. I was meeting with the person who has planned the mito walks all of the years prior to last year, 2012, when I did it. She had stepped down last year because she had way too much on her plate. She wanted to step back into the roll of co-chair again. So, we have decided to chair the Energy for Life walk together, with help from my husband. We have already decided on a date and location and split up quite a few of the duties. We have 7 months to plan this year's walk instead of 3 like last year. This year's walk is going to be a huge success! The extra time will help a TON and having someone else to share the planning responsibilities will help a lot as well. That way, when I'm sick, I have someone else to rely on to take over for me until I get better.
This weekend I am heading to the lake with my best friend and cousin, Kerri. I had decided about a month ago that I needed to get away for a weekend and go to the lake. I was originally going to go to the lake by myself for a weekend, but I decided it would be nice to have Kerri there. We don't see each other as often as I'd like, especially now that she's working (she used to be a stay at home mom). We can both get some much needed time away from our kids and some much needed time with a friend.
So, as you can see, it's been a great week. I'm really hoping that I stay healthy for the weekend so I can enjoy it. I have a lot of news I want to tell everyone about, but it all deserves a post of their own. So keep an eye on my blog for the next week or two for some important announcements. (If I'm really good, then I'll post it all this week. However, I always have great intentions of posting more frequently and it never happens.)
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