Monday, March 2, 2015

Appointments

I had two pretty important appointments in the last two weeks. The first one was my follow up doctors appointment. I had previously written about it here. I had my three month follow up to have another eye scan done to check to see if anything had changed, in regards to my Plaquenil I take daily. Fortunately, nothing has changed and my eye doctor has cleared me to take the medicine for another six months. At which point I'll have another eye scan done to look for changes. Win!

The second appointment was my six month check up with my rheumatologist, Dr. A. I declared that I was boring, at the moment, when it came to my Sjogren's. And she agreed. Normally I would be slightly offended to  be considered boring in any way. Except when it means no new rheumatology symptoms for the last five months. Just the same ol' same ongoing ones here, baby!!



Monday, February 23, 2015

Weightless

This is one of my favorite pictures from my whole Disney trip. Maybe it's the bright colors. Or it could be that blue sky filled with so much hope of a beautiful day. I think it's probably the carefree weightless feeling to the picture. It makes me happy.

Here's hoping you have a "weightless" day friends!




Monday, February 16, 2015

Busy Baby Resting Mommy; Crayon Rocks

I was recently reminded of the fact that I haven't done many Busy Baby Resting Mommy posts. So I have a few to add in the future of things that my girly and I have done recently. Today activity is a great way to let your kids get creative while allowing you to relax.

What you'll need...

Crayons (with some of the paper peeled off)
Flat rocks
Cookie sheet
Tinfoil or wax paper
Oven

Directions...

Preheat oven
Line cookie sheet with tinfoil.
Put rocks on cookie sheet and into oven.
350 degree for 15 minutes
Pull out the cookie sheet and let your kiddo go to town with those crayons on their rocks! (It may be obvious for me to say this but, just make sure they don't touch them they will be hot hot hot.)

Monday, February 9, 2015

Snow

I know I shared this picture on my Facebook page recently. I just loved it so much that I wanted to share it here as well.

I usually look at snow falls with mixed feelings. It's so beautiful with everything being covered in a soft white covering of snow. And, often, while it's falling the world outside becomes muted and peaceful. However, my world inside often becomes loud and full of begging. "Mama, it's snowing!! Can we go out?!?!!" My girly gets so excited to go venture out into the world of snow, as most kids do. The thought of snow, during the week fills me with dread because of the venturing out into that happens.

Before you start thinking things about what an awful Mom I am I'd like the chance to defend myself, please! Generally it takes quite awhile to get a kiddo dressed in all their many layers for them to go out and conquer their snow piles. Shirts, multiple pairs of pants or pants and a layer of snow pants, boots, gloves, hats, scarves, and finally a coat get put on. And then... it's my turn to get everything on to go outside. Then there's the playing outside in the snow part.

Don't get me wrong I always have fun playing with my kiddo in the snow. However, all that energy used + someone with low energy already and poor circulation = not a good thing! Basically I usually spend the rest of the day trying to get back to normal. (AKA. feeling like I can walk from the couch to the bathroom without any issues.) And I will probably end up wearing a hat and a scarf on top of my sweatshirt for the rest of the day. No. Lie.

My favorite snows? Are the ones that happen on the weekend. Then my husband gets to have the pleasure of getting our girly ready and go outside with her. I get to sit on the couch, with our window cracked open so we can talk to each other, while my hubster and L are outside. So I get to be a part of the fun without doing the part that would leave me exhausted and shaking from the cold for the rest of the day.

I'm seriously past the point of sitting in a pout wishing I was outside with my daughter. It does me no good. And it definitely, does no good for L. So I found myself a way to do what I want in a way that will still be friendly to my body and health. Finding a way to take part in life, just with little tweaks that make it fit into my life, is key when dealing with a chronic illness. :O)



Monday, February 2, 2015

The Shining

Recently, I decided to be a little bit more relaxed and just give in to my hair's natural wavy/curliness.

I got some great new product for it that's supposed to encourage curl. I love the name. "Not your Mothers Kinky Moves". Yep. You read that right!!

Besides the delightfully sassy name, it smells downright delicious. So good I'm slightly tempted to eat it when I am half asleep and attempting to blow dry my hair in the mornings!

My 8 1/2 year loves it too. (The 1/2 is apparently a VERY important distinction to make!) The other morning, every time I turned around I found her standing behind me. Standing there all what-I'm-not-doing-anything like. Sorta like those creepy red rum girls in The Shining movie. If I turned back around I would hear her trying to quietly sniff my hair on the down-low.

If this alone were the creepiest thing she did, before school, we would have been good!

As we were snuggling on the couch I caught my girly leaning closer and closer to me every time I snuck a peak of her out of the corner of my eye. I mean, I was one hot second away from screaming, "Here's Johnny!", at her and running for the door. I didn't think she'd fully appreciate the reference though, so I just looked at her and attempted to give her a sweet mommy smile.

In response to this she picked up a strand of my hair, shoved it against her nose, and sniffed it like she was trying to sniff all of the smell out of it. And leave my hair with no smell. At all. (Which, incidentally, would be really weird!) Then she gazed at me with the most loving expression and said, "Mama, I love the smell of your hair so much that I want to rip some of your hair out of your head and carry it around in my pocket all day long and pull it out and sniff it whenever I want. That's how much I love it!".

I was so thrown off by what she said that I just sat there and blinked at her for a few seconds before calmly asking, "Is that a good thing or a bad thing?". Then she giggled at me and continued to watch TV as if it had never happened.

So, I wanted to share this because I know that it's an amusing little story to make you smile today. But also, if I go missing check with my daughter first!




Monday, January 26, 2015

Tired

I recently experienced an awful migraine. It left my head pounding, my neck hurting, and dealing with bouts of nausea.

While I was dealing with this my little lovey girl brought me a blanket, tucked me in with a blanket to snuggle under, and tried to ply me with mints to help keep the nausea away. 

After my migraine meds had finally done their job it left me with two clear (well as clear as a person can be, just coming off dealing with a migraine) thoughts.

Number one... It's absolutely amazing to me just how tired, dealing with pain, can make a person.

And number two... My daughter is going to make a wonderful mommy some day.

Monday, January 19, 2015

Weighing the Risks

I had a visit with my eye doctor the other day. Recently (or not so recently) I had begun to notice that I am having some vision issues. Not with not being able to see things, more with actually seeing more than I should. I guess explaining further would be helpful. Ahem.


It began about six months ago, while I was watching my daughter's soccer team practice. As I watched eleven of them running around the field I realized that most of them were dressed in some variation of pink.  They are seven, eight, and nine year old girls so that alone was not what concerned me. It was the fact that surrounding each pink piece of clothing was a blue shadow. As it was the first time this happened I just blew it off and went about my night chalking it up to me being tired or my body just being weird (As it has been known to do before. Be weird that is.). This wasn't a sudden thing and it wasn't every time so for awhile I didn't think anything of it, truthfully. And having dealt with my body doing odd things and then having it just go back to "normal" after awhile, I try not to be an alarmist about things. When it became noticeable most of the time I realized that I should probably do something about it. So I mentioned all this to my rheumatalogist who strongly recommended that I see my eye doctor. Which brings me back to the beginning again.

I go in every year for "eye mappings" due to the fact that I am on Plaquenil, which can lead to retina detachment. I was not due for my regular "eye mapping" until April, (To read more about this please read this post I previously wrote in February of 2012) however my doctor felt that it would be beneficial for us to do another one. The results showed that I have a small hemorrhage in one of my blood vessels (which could be nerve related as it was fairly close to a nerve) and there was also some slight discoloration in my cornea. The doctor said both things may or may not be causing the blue shadow to appear when I look at things that are pink. Though, he didn't seem to be very definitive about it. Either way, I am to return in three months time, when I will have another "eye mapping" done, to make sure that the hemorrhage is gone and to see if the discoloration of my cornea any worse.

This whole long story is to explain that I now, possibly, have a difficult decision to make for myself. The discoloration of my cornea could be happening because of my medication Plaquenil. It may mean that there is some damage being done. The next "eye mapping" should show us whether that is the case. And that is where my decision comes into place. If there is more signs of cornea discoloration I have to decide whether to continue with my Plaquenil treatment or stop it.


I have read many articles, lately, regarding Plaquenil and possible long term usage issues. My big problem with all of this is that Plaquenil has made all the difference for me. ALL the difference! I once had to go off of it to see if it could potentially be causing a heart palpitation problem. It wasn't, but those two loooong weeks were simply awful for me as far as pain levels and dryness go.

So it pretty much comes down to A. Stay on the medication and risk possible complications in my eyes. Or B. Go off it and have to deal with my body without Plaquenil. At what point does a patient decide whether it's worth the risk of adverse side effects if a medication really helps you? I'm not really sure which way I'll go on this.