Friday, October 16, 2015

Love


Guys, it's been forever!! Crazy long time! I spent the last part of the summer soaking up all the time I could with my girly before it was over. 

Once school started I went back to work in the school's cafeteria. This year my body hasn't acclimated as well as it has in the past with all the walking and moving. Energy levels have been pretty low for me, which has kept me resting a lot more on the couch than I've been accustom to lately. My joints have not been happy with me and I've developed bursitis in my shoulder from the repetitive movements my job requires. My rheumatologist gave me a shot of Cortisone in my shoulder which worked wonders for me! And now, for the most part you are caught up with the basics that I haven't had the time or energy to share with you recently.

A big part of my life in the fall is soccer. My girly plays at least one game every weekend. In the past year I have become highly sensitive to the cold due to my Reynaud's Disease. Fortunately up until now it's been fairly warm to be outside. Now it's beginning to get chilly in the mornings in Pennsylvania and I am having a harder time keeping warm. I feel absolutely ridiculous because I am bundled up in scarves, hats, and gloves already in 50 and 60 degree weather. I am blessed with a super understanding and supportive husband (after he's chuckled at me for only having my nose sticking out). 

My husband has previously found me Hothands to use in the wintertime. They are little packets that create heat when exposed to oxygen. I pop them in my sweatshirt hoody in the morning and they are still warm ten hours later. I love them and they keep the Reynaud's issues away for the most part.

This year my honey found me something new to keep my hands warm outside! They are gloves/mittens that Hothands makes to allow a person to tuck a heat pack into and take them on the go. They have glove fingers with a mitten fitted around it to keep the Hothands in. And the pointer finger, of the gloves, are fitted with a touch sensitive pad to allow you continued access to your iPhone. Which will definitely come in handy for me as I have always had to choose between keeping my hands warm or taking pictures on my phone. Boom! Problem solved!! 

The gloves were very affordable and I am completely giddy about them!!!


*I was not compensated for these in any way, nor was I asked to write this by anyone. This is simply me writing about a great find that might help others with their circulatory issues. (Wish I could test out more of their products as I have loved them all so far!!! Ha ha ha!)

Friday, July 31, 2015

Weekend

This past weekend my little family ran away to the beach. It was such a gift to me. A long moment of joy. I had no cares beyond what fun thing we were going to do in the next hour and which treat to buy for dessert. It was marvelous, and I feel like this pictures captured it so well!!

I wish you moments of pure joy and peace in this coming weekend!

Monday, July 13, 2015

Lazy Summer


I realize I haven't post anything in awhile. I'll try to do better but can't promise.

My girly and I have been busy doing a whole lot of nothing. And we're loving it!! Every once in awhile my mommy guilt kicks in and I start to feel guilty that i haven't done more with L this summer. (I've spent a few days on the couch this summer for sure.) But then I remind myself that we are still making some amazing memories just sitting at home whiling away our days doing "a whole lot of nothing". And if we were so busy rushing around to get to one activity or another then we'd be missing the little things. Like the breathtaking view we got one lazy afternoon as we made our way to pick up our csa box for the week. It's the little things that count the most sometimes.

I hope your summer is going great!

Wednesday, June 10, 2015

Berry Picking

My girly and I decided to go berry picking one day last week. We slathered the spf50 on, threw on my hat, and took off with our buckets to our local Farmers Market.

We ran into a great bit of luck and found some amazing berries in the fields! And somehow we ended up pick nineteen pounds! Yes. You read that right!!

My girly and I spent the afternoon slicing up strawberries. We set some aside to make a pie later this week. Some got sliced up and sugar was added (my girlys favorite way to eat strawberries), more had the tops cut off and were thrown in the freezer for smoothies, and the rest were sliced up and frozen to use with strawberry shortcake sometime in the future. I was pooped by the end of the day, but it was worth it!

Tuesday, May 26, 2015

Family Fun

 I hope everyone had a great Memorial Day weekend!
 We spent the weekend, camping with family, with no phone service. Perfect!





Monday, May 25, 2015

Color Run

Last year I found out that the 5K Color Run was coming to Hershey. The run promotes health and making fitness fun by "releasing" (read pelting) color at you. By the end of the race you are a virtual rainbow. I wanted to take part so badly. 

Then the fears kicked in. Can I walk the whole thing? Would my asthma give me issues after breathing in the colored powder? If I got the powder in my eyes would it cause issues for my Sjogrens? The worries and what ifs circled in my head. And I let them defeat me. I gave in to my fears and gave up on my "dream".

The day of the race I sat in my defeat and watched all my friends Color Run pictures fly by on Facebook.

This year. This year, I wanted to take part so badly. Then the fears kicked it. 

Until my greatest fan came along to kick those fears in the butt. My husband reminded me about how strong I am. He told me about the woman I am, who is living life with Sjogrens. Who is LIVING and not letting Sjogrens run my life. I heard stories of the times I've set out to do things, thought I would fail, and conquered. My husband who has taught me so much about myself and what I can accomplish gave me the courage to try. 

So, I threw it into the wind and said, "I'll do my best and be happy that I didn't let my fear and Sjogrens win."! 

My mom, aunt, and cousin decided to join me too! I won't lie and tell you it was all a walk in the park. It was hot. And there were some really steep hills. I reached the finish line tired but exhilarated. I made it, gloriously covered in a rainbow of colors and sparkling like a unicorn! Ha! You think I'm joking!

Take that Sjogrens!!




Monday, May 11, 2015

Busy Baby Resting Mommy; Hopping Corn

video
I cannot remember if I shared this or not, but this is a great experiment to try with your kiddos. I would say the age should determine how in depth you get with the science of it. Even if you don't go too in depth with it, even little ones might enjoy watching the corn dance with "magic".

I found this on Pinterest. You can find the original posting here. onetimethrough.com/ does such a great job describing this experiment that I will just tell you to go read their directions.

And have fun with this! It's a great way to entertain your kiddo while resting and conserving your energy!!



Monday, May 4, 2015

Oops I Did it Again

I spent a good part of my Saturday outside this weekend. My Little had a soccer game that ran over and then we spent some time putting together a swing for our back deck. Thanks to that I've officially gotten my oh-yeah-my-medicine-makes-me-burn-like-nobody's-business-and-now-I've-learned-my-lesson-for-the-summer sunburn.

Ordinarily a sun burn can be really annoying to a person. Unfortunately, I get the sunburn with the additional issue of dealing with neuropathic pain that runs along the places that are sun burnt. It feels like I have volts of electricity running under my skin when I have been burnt. Similar to the unpleasant sensation you feel if you would stick your tongue to a nine volt battery.

Needless to say I will be using lotion til fall now.

In the mean time don't mind the smell people, that's just me slathered in aloe!



Monday, April 27, 2015

Time


What time is it?

It's freckle time!!

Everybody now... Duhn Nuh Nuh Nuh    Nuh Nuh   Nuh Nuh...







Monday, April 20, 2015

Journal

I've been making a journal for my girly since she was two years old. It's full of jokes she loved at three, funny stories, and letters I've written to her about what's happening in her life. I decided to add some art work to it for her. I love the way it turned out and thought I'd like to share. (Incidentally, part of the picture is a little blurred as I had to paint over my girly's name in Photoshop.)

Sent from my iPhone



Monday, April 13, 2015

April Fools


I know this is super late. April Fools is the first and now we've landed on April 13th. I happened upon this while I was uploading some pictures and I had to share with all of you!

This was a super simple April Fools joke I play on L!! And as you can see, she was perplexed!!

Are you ready for it? I made a bowl of cereal, made sure all the cereal came in contact with the milk to make it wet, and then I popped it in the freezer. In the morning I pulled it out and set it down in front of L and you couldn't tell it was frozen until she tried to stick her spoon in it.

Priceless!!


Monday, April 6, 2015

Easter

I hope everyone had a wonderful Easter spent with family! Ours was great!


Monday, March 30, 2015

Wow!

I was looking back through pictures of my husband and I and suddenly realized how far we've come in our journey to be healthier. We're at 70 pounds lost together and counting!!




Monday, March 23, 2015

See a Need Fill a Need

A friend of mine took up knitting. She showed off a cute pair of fingerless gloves on Facebook. It got me thinking, I could really use a pair of those!  Oooh with a pocket to slip my Hot hands packs into. Only it needed to be a pocket in the palm of my hand instead of on the top of my hand so I could warm my fingers up too, if I needed it. Now that would be amazing for my Reynauds!! (Which you can read more about here.)

So I did an internet search and couldn't really find anything that fit what I wanted. Okay, yeah I was being picky, I'll admit. I had a certain thought in mind and just couldn't find anything to match it. So, I decided to get crafty and see what I could come up with.
I started with a scrap of leftover fleece that I had laying around the house. I measured my hand and arm and cut two strips.
Next I simply sewed the two longer sides together.

And there are my fingerless "gloves"! They reach down my forearm and can slide up to cover my hands if I need them to.

I can even fold them over to slip one of my Hot hands in to sit over the palm of my hand. Perfect!!!

Monday, March 16, 2015

Monday Smile

Fur-baby #1 had an E.T. moment the other day. (Ie; paralyzed by fear because of the vacuum, she momentarily let L take advantage of the situation and wrap her in blankets.)

Monday, March 9, 2015

I Am Enough

In the past few days I have been struggling with something very common to chronic illness patients. I face this feeling every year around this time...The thought of, "What makes me worth it?".

With all the Sjogren's issues that I write about in my blog, I rarely go into how much my husband and daughter are affected by my illness. It's usually about what a Sjogren's patient has to go through. For every allowance I have to make to live, survive, and overcome Sjogren's. Every. Single. Day. My family deals with every bit as much, if not more than I do. There's missed trips to the park on low-energy days. My husband has taken over the bulk of the laundry duties so I don't have to carry baskets full of clothes up and down the stairs. And he let's me put my, ice cold, Reynaud's hands on his back to warm them up. That's just the tip of the ice burg and doesn't even begin to go into the tiny little things that my husband thoughtfully does for me every day, in order to make things easier for me, that I don't even realize that he's doing.

It hurts. I have guilt so deep, for what my husband and daughter have to endure because of me, that it hurts. It digs into my heart and just sits there in a heavy lump that makes my eyes burn with tears and my throat close up with remorse. And it leaves me wondering what makes me worth it. What do I give to them to make up for the fact that they deal with these hardships because of me. I don't mean monetarily, or anything so superficial. Buying my daughter an extra DS game isn't going to solve the issue clearly. It's about what I give to the relationship that makes my husband want to stick around and makes my daughter continue to love me unconditionally without getting tired of the ridiculousness of this disease we deal with. Because it IS a "we" that happens when a person in a family has a chronic illness.

My mind seems to wonder and wander over and around these thoughts and feelings about this issue. And I hope that I may have conveyed just a small portion of what I am thinking and feeling well enough. Though, I do feel as if this post is a little "all over the place" as I wrote things as they came to the forefront of my mind. Or perhaps it is merely a good example of the complexity of emotions and thoughts that revolve around dealing with a chronic illness on a daily basis. Sjogren's isn't just about how it affects a person physically. There is a very real emotional side that comes into play as well ( as is the case with a lot of chronic illnesses).

For now, I am trying to block out these thoughts and feelings of, "What makes me worth it" and focus on "I am enough".

I. Am. Enough.



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.



Monday, January 12, 2015

Quote

This quote really spoke to me...

"Suffering is not the absence of goodness, it is not the absence of beauty, but perhaps it can be the place where true beauty can be known,” -Kara Tippetts

...Not particularly because I am or am not suffering tonight, but because I think that sometimes suffering has a way of bringing life into focus. It can help you see the beauty in things that often gets overlooked when everyone is so busy rushing through life.



Monday, January 5, 2015

Funny

Ah... ah... ah... CHOO!!!  I was sick recently. Surprisingly, that doesn't happen very often. When it does it's usually a pretty ugly week until I am starting to feel back to myself. This time I had a sinus infection take me down. Sneezing, and snotting, and sinus pressure, oh my! Bleh! I had two or three REALLY bad days when the only real movement I made was from the bed to the couch to the bathroom and back.

The first day that I started to feel even a little better was an answer to my prayers as it was a day that I couldn't "phone in" as a mom.  My girly had her Christmas program at school. That morning I was tasked with getting her extra ready for school. Girly dress, super fancy hair, and I even allowed her to have some of my lip gloss. She took so long that as we were leaving the house we watched her bus drive buy. Ugh! Worst. Feeling. Ever. Seeing that bus drive buy and knowing there's no way that your kid is going to be on it. So I let out a defeated sigh and piled my daughter, with her big bag of teachers Christmas presents, into the back of the car. And then I trudged back into the house for my purse. Limped would be a better word for it as my body had decided that it was super unhappy with me for being sick and so my arthritis wanted a part in making me miserable as well. I grabbed my sock monkey hat to cover my crazy-sick-hair that I had going on and shoved it on my head as I ran out the door.

About half way to L's school I realized that I was tired. T-i-r-e-d! Sleepy tired and the sluggish auto immune tired that I get as well. By the time I got my daughter to school my nose had decided to rebel against me and was actively trying to help all the snot, stuffed up in my sinus cavity, to meet with my upper lip. Ew. And that was about the time that I had to scrounge for some random fast food paper napkins, smelling like stale McDonalds, that I had once stuffed into the door of my car for "emergencies". Little did I know that I would be using them on my nose, which would feel like sand paper trying to take off the first few layers of my skin! Once that was taken care of I realized that my throat was also hurting and I remembered that I had just sent all the cough drops to school with my girly. A detour to CVS was called for.

As I crawled out of my car I fervently hoped that I wouldn't run into anyone at our community CVS. I limped down the cough isle of the store with my ratty yoga pants on. Hair was haphazardly sticking out my hat as it was somehow knocked crooked between school and my arrival at CVS. Or did I just put it on that way? Somewhere around the card isle, on my way to the register, I suddenly realized that I couldn't remember if I had even managed to put a bra on that morning before getting dressed. Did I? Or... didn't I?! Oh my goodness!!! Why did I NEED to go to CVS?! And, that was about the time my nose decided to start running again, with my sandpaper napkins in the car. So, I resorted to attempting to sniffling it back up my nose. As I hobbled up to the cashier he gave me a semi-horrified look and set about hastily ringing me up. I'm pretty sure he thought I was homeless.

Fortunately, I did not run into anyone I knew. And I had a few hours to get myself together before I had to go out into public again. Oh boy! I think next time me and my sock monkey hat will stay home!