Thursday, July 31, 2014

Motherhood

Motherhood. Most woman, at some point in their pregnancy, sit quietly rubbing their bellies as they imagine what they will be like as moms. The pictures of things you "see" happening run softly through your mind. The fond imaginings bring a smile to your face while you count down the hours til you can hold that teeny tiny baby in your arms.

Then somewhere after you get used to being awake at midnight (or maybe just being awake when the awful party line and bad lawyer commercials come on) and just a little before falling asleep while attempting to drink your coffee, after heating it up for the third fourth time, you forget those dreams of motherhood you had.

The days are so long during the baby and toddlers years. And yet, the years go by so so quickly. So perfectly. In a blink. Out of no where one day something will make you think of those moments of blissful pondering you had, imagining your life as a mom.

That happened to me the other day. I don't recall what made me think of it but I was suddenly thrown back into those memories. The mom I had wanted to be someday...

I was going to be fun, and hip, and be just the right mix of "go explore your life" and stern "get your act together". I couldn't wait to sing lullabyes and teach my little girl, the song, Jesus Loves me. We would make so many cookies at Christmas that the house would smell for days, just like I did with my mom. Barefoot, and dirty we'd explore creeks and build dams just before heading inside to paint our nails.

I got caught up in so many whimsical tiny details that I completely didn't think about the bigger picture. Like what would happen if I wasn't able to be "a normal mom". I took it for granted that I would be a "healthy mom". Doesn't everyone? I never thought that there would be a moment, in my life, when I would have to employ my "creative parenting skills" so that I could play with my daughter. It wouldn't have even entered my mind that I might have to send L off to a party with her daddy, waving her chubby little fist goodbye, because I couldn't be out in the hot summer sun for too long.

Now, looking back after eight years of experience (knowing I have so many lovely years to look forward to) with motherhood and chronic illness I've come to sum it up like this...

It's like planning, all your life, to go to Italy and then finding out one day that you'll actually be going to Africa instead. They can both be the most absolute amazingly beautiful places to visit, but you will have a completely different experience then you originally planned for.

Parenting with a chronic illness is exactly like that. I have still been able to do all the things that I imagined just in completely different ways than I had imagined doing them. It's taught me to live in the moment. To not take it for granted that I will feel just as well tomorrow, so I might as well enjoy today. Being a mom is not always perfect moments. That goes for everyone. Sometimes it's just clinging by the edge of your seats as you desperately try to figure out what you should be doing. But my illness has made me see and enjoy those little things that some might take for granted in every day life. Those perfect little moments that I will always remember. The way the sun glinted off my daughters hair as she turned to run down the walking trail. Or the joy in L's face when I had a good day and was able to build, with her, a huge Lego horse barn for her My Little Ponies. I appreciate so much because I'm there with her. I don't just mean physically there. I mean, THERE for her. And, maybe. I have my Sjogren's to thank for the mother I am today. And the years, I've had with my girly so far, that I wouldn't change.

I might even go so far as to say that Motherhood with Sjogren's Syndrome has been serendipity for me.

ser·en·dip·i·ty [ser-uhn-dip-i-tee] 

noun
1. an aptitude for making desirable discoveries by accident.
2. good fortune; luck:


Monday, July 28, 2014

Amusing

Today seemed like the appropriate day to share this funny little pic from this past weekend! I'm off to have some birthday fun!!



Saturday, July 26, 2014

7 Things My Daughter Gets Out of Me Being Chronically Ill

My mommy guilt has taken a vacation lately. It could be because I haven't had many "bad" days recently, so I haven't had many opportunities to feel the guilt creep up on me and nestle into my chest as I lay on the couch. Or maybe I've just matured a bit. Ha! My bet is on the first one! I recall a few years ago, a helpful reader sending a very special comment my way that was so uplifting in regards to raising a child while dealing with an auto immune disease. I still remember it and without the haze of mommy guilt hanging over me I can now see the wisdom of it. Anyway, on to my list...

1. She's more independent. L doesn't expect me to help with everything and actually gets upset when I help sometimes, especially on my "bad Sjogren's days". She wants to be super helpful by doing for me rather than the reverse (and yes, that can be equally frustrating for me at times).


2. A wealth of empathy. Don't get me wrong she's not always super empathetic, she is eight after all! But I'd like to think that she's more empathetic than a lot of eight year olds can be. L can put herself in someone elses shoes, imagine, what they might be going through, and then tries to help a person feel better about what they are going through.


3. She's gotten a first hand view of how families still live "normal lives" with chronic illness or disabilities. So L doesn't just assume that because she sees someone in a wheelchair that they might live any differently then anyone else. I like that!


4. Creativity. Sometimes life just can't be lived in a way everyone else thinks is "normal". Even if it is a "normal" way to live for someone with chronic illness. To get to the new "normal" people, and often families as a whole, need to become creative in their approach to find ways to do every day things. Creativity plays a super big part in this. "Creative living" might be a good term for it, especially when I am in couch mama mode.

5. An ability to adapt fairly easily. I'm not saying this is completely true in every circumstance, however, I think that proves to be the case more often than not. L has learned how to roll with most circumstances and we try to make the best case out of it.

6. My daughter has become more nurturing. Not because I have made her take care of me, but because she feels happy taking care of others in all difference situations.

7. Intuitive. This often runs hand in hand with the empathy. L is able to pick up on things that many children would not pay attention to or overlook. She has a way of going really still, observing things, and then acting or reacting to what she sees needs done.

My daughter wants me to, unofficially, add a number eight. Which would be, "I get to eat snacks and dinner in the living room when Mommy isn't feeling good."






Wednesday, July 23, 2014

Too Much Birthday Fun

We had a birthday party for my girly a week or so ago. It was held at a park. We lathered on the sunscreen, and wore hats expecting an 88 degree, bright, sun-shiny day. It was hot. Hot and muggy. It only lasted for about forty minutes and then the sky opened up and poured. The kids LOVED it!! The sun, the rain, and the puddles.

I thought that since I had only been out in the "sun" for forty minutes that I would be okay. And when I write, "sun", I mean under a tree in the shade kind of sun shine you get on an 88 degree summer day. So, it wasn't completely out of the question that I might feel okay the evening after the party. Especially given that it usually takes a couple of hours, in the full on sun and heat, before I feel the effects the same evening.

I was wrong. I don't know what sent my plan into a tail spin, but it plainly did not work out the way I expected. Maybe it was how hot it was in combination with the mugginess. Or, perhaps, I wasn't as "in the shade" as I thought I was. That evening, as we sat on the couch snuggled up and watching Harry Potter, I started to feel my "sun sickness" kick in. It begins with a sluggishness that fills my body, next I start to feel a little achy, my head begins to feel as if someone is stuffing it with cotton before it begins to hurt, and finally my face gets hots and I start to feel a little bit chilly as if I have a fever. Sometimes, this is accompanied by nausea. Fortunately, for me I did not have that with this time.

I suppose where I am going with all of this is this, Sjogren's Syndrome (or really any chronic illness) brings with it a very real need to constantly reassess things. Every time you think you have a handle on things it goes and switches things up on you. Which is why I am happy that I have gotten so adept at thinking outside of the box!



Sunday, July 20, 2014

A Little Bit of Funny

Photo Credit
I absolutely NEED this for my cold winter days!!!!  Fantastic!!




Thursday, July 17, 2014

App Love

You guys! I just recently bought an iphone for the first time. I have been perusing the various apps that are offered since I bought the phone. And I came across one that I am undoubtedly going to love and wanted to share!

So without further introduction, I give you....

iRxHelper

When you have as many medications as I do, it's REALLY easy to drop the ball and forget to refill your medication in enough time before you run out. iRxHelper takes take of that for you!

There are categories in this app to allow you to organize all your family members medications. After you add the family members you can go into each and add the medications that each person takes.

Here is a list of my medications (minus one I think). That's a lot of medications to try and keep track of refilling!


When you want to add a medication you click on the + sign and it asks you
to answer all the questions, which you can find on your medication bottle. (There a few extra questions that I wasn't able to show in this picture.)

When you are finished the app gives you an opportunity to calculate


when your prescription will be due to be refilled again. Then it will notify you within the amount of time that you choose in the "Settings" area of the app. I chose 14 days since it takes a crazy long time to get my refills. When a refill is due a number will appear in the corner of the app to let you know you should refill something soon. So the picture is showing that I have two medications that need to be called in for refill.

It may seem a tad complicated while you are setting up the medications at first, but I see this being a HUGE help to me (or any patient with a lot of medications)!!!


**Disclaimer** I was NOT paid or contacted, in any way, by this company to write this blog post.

Monday, July 14, 2014

Acadia National Park

 Our last day in Bar Harbor was amazing and we couldn't help but run around Acadia and take lots of pictures in the process!!