VIsit to the Dermatologists

I drove my baby to kindergarten this morning.  I managed to hold the tears in until I reached the car. I was very proud of myself for doing that! I was even more proud of L who all but pushed my husband and I out of her classroom despite being a little nervous. Yay for her! So, needless to say, I have been weepy today.  Little things that would not seem to be related to the first day of school are making me tear up. The mailman walked by and I started sniffling because I saw a picture in my head of my daughter, with nothing but her diaper on, waiting to get the mail from our mailman when she was barely walking. Wow, I cried!

In addition to this being the first day of kindergarten I also had a dermatology appointment to go to. I would not have picked to go today if I had my choice. Had I known when I scheduled this appointment that it would occur on the first day of school I would have chosen a different day. Unfortunately, I had to wait all summer, literally all summer, to get this appointment so I was stuck. Fortunately for me, my dermatologist ended up only being a year or so older then me and had just sent her first grader off to school this morning herself.  So she totally understood my puffy eyed look as we sat making small talk at the begining of the appointment. What a great bedside manner she had!

I had been sent to the dermatologist because I've had a red rash covering my cheeks and nose for the last six months that has not gone away. This can be a symptom of two different chronic illnesses so my rheumatologist, who had referred me, wanted to rule out one of the diagnosies.

With in the last month or so I have also started having eye problems. Styes and swollen eye lids have combined to give me something called Blepharitis.  Which, in a nutshell, is an inflammation of the eye lid.  This can be caused by bacteria, allergies, and other underlying medical conditions. So having Blepharitis combined with the red patches on my cheeks led myself and my dermatologist to believe that I now have Rosacea..  Which is basically a redness on my face, pimples across my nose and cheeks, facial sensitivity in my skin, and possible eye "irritation".  I have it all! But, truly, eye irritation is what I have with Sjogren's.  I don't find my new eye issues to be just a slight irritation.  They just downright hurt every time I blink! Which, you know, only happens every seventeen thousand times in a day!

After being diagnosed the dermatologist spoke with me about what I can do to treat my new symptoms. I am supposed to make sure to liberally use my suntan lotion in the sun.  Since my skin will now have has a "new sensitivity to the sun". So I checked that one off my list since I am already doing that. I will also need to start washing my eyes on a regular basis with baby shampoo. And lastly, there is an ointment I can use for my cheeks and a very low dose of an anti inflammatory to help with my Blephoritis.  I am choosing not to deal with the ointment or pill as of now since I don't really want to add another medicine to my daily routine.  For now I am supposed to start using my eye drops more heavily and do everything that I have already been doing. So I guess I am at an impasse for the moment but at least I have a diagnosis now. And knowledge is a great thing when it comes to dealing with one's health!

Now, I am signing off.  Because it's soon time for me to go pick my baby big girl from the bus stop.  And wild horses dragging me while I am hog tied to pole couldn't keep me from being there to see her bright smile as she gets off the bus!

More L'isms

In honor of the fact that I am sending my daughter off to kindergarten and crying a river when I get home from dropping her off tomorrow I am posting a blog with more L'isms.  Enjoy!

Random Statements.....

"I am as hungry as a goat tube!"..... I have no stinking idea what this actually means.  If anyone else knows please clue me in!


"Here's a quarter for you to use when you go out with your friends tonight. Because you always give me so much of your money to just spend on myself!"..... Can I just say AWWW! And for the record I did not take her quarter!

"Can we adopt a tiger when one of the dogs die?"..... Sure and we'll keep it in your room right next to your stuffed animal collection!

"I know what 'perhaps' means. It means 'maybe'. He he he he I know grown-up words!"..... She's way to smart for her own good.

"Oh no! I just tooted all over my clean hiney!".... She said this after she had gotten a shower and before she ran around the house naked as the day she was born.

"Mommy, I like your lip gloss. It makes your kisses sweet!".... Mommy has just stumbled upon a diabolical way to get L to kiss her more often.

"Mommy, go to sleep! Parents need their sleep!".... She was SO so right.  So I did go to sleep. That nap was delicious! 

"Yaaaaaaaay Sleepover at Nana's tomorrow niiiiiiiiight!".... As L does a victory lap around the house naked! I'm sensing a theme. I never truly know what she's going to next.
  
I'm so hungry! Like down to my feet. Like the underside of my toes where I don't talk at all. That hungry!!".... Again, with the themes. I must not feed her! Ha!

"Look at that beauty!".... She was talking about a "camper". And it wasn't even a camper it was an equipment trailer. 





Conversations.....

ME: L, what are you doing? L: Something weird. ME: Why are you doing something weird? L: Because doing weird little dances makes you feel better. ME: Huh? Care to explain that? L: If I do a weird dance then it makes you smile. If you smile you always laugh Mama. And if you laugh that makes you feel better. See I know you!...... I guess she does.

Mmmm.....Raspberry Meringue Cookies

Friday.  Today was the last week day before L goes to kindergarten on Monday.  Daddy stayed home sick so we couldn't go anywhere to celebrate instead we stayed in and still had fun. 

For lunch we had mini pb&pj sandwiches. We also had banana sandwiches. Mmmmm!

In the afternoon we made raspberry meringue cookies with chocolate chips buried in the middle. This is the first time that we have ever made meringue cookies so I am hoping that they turned out well. They smell super yummy! They taste almost decadent. I think L had more fun licking sugar off her fingers and eating the chocolate chips.  Though, she did enjoy helping me squeeze the meringue mixture out of the icing bag that we used.  And for the rest of the day she had fun helping me eat them. She would pop into the kitchen and taste one to see if they still tasted good.  Silly girl!

New Haircut

I haven't written too much about my Methotrexate experience on here. I try not to think about it mostly.  Just because the thought of feeling like I have the flu every Sunday, and no energy on Monday, after taking the meds can be a little depressing to think about. I try to remind myself that those symptoms can be relatively tame compared to how some people react to chemo pills. So I am lucky.  Another side effect I've been dealing with is weight gain since starting the medicine. I have not changed my lifestyle or my eating habits at all.  So I am contributing the gain to the medicine. Maybe it has screwed up my metabolism? Either way while twelve pounds is not really considered to be that much to some people, it's a big deal to me since I was already trying to loose weight to begin with!

The last side effect that I have been dealing with is hair loss and thinning of my hair. I am fortunate enough to have been loosing it all over my head rather then in patches which would be hard to cover up. So I finally decided that my hair was just too thin to stay long anymore.  This morning I went and got it cut.  I was sad because I was really enjoying having my long hair.  But I am content in the knowledge that it will grow back.  And the bonus to getting my hair cut is that it was long enough to donate to Locks of Love. So my loss is some child's gain in the near future.  I am very happy that I was able to donate  my hair.  And it makes up for the fact that I couldn't keep my hair long anymore.

So what do you think of the new hairstyle?

A Little Fun

This afternoon I found myself with a little extra energy. I have been wanting to try out this new faux apple pie recipe that I had just been given.  We have zucchini in our garden now and I was excited to make something with it. So L and I decided to dive into the recipe, mix in a little bit of our own flare, and have some fun baking together. My daughter insisted on trying every single ingredient that went into the pie. Which worked out fabulously since I wouldn't have gotten her to try zucchini on my own with out some sneaky way of doing it! And she liked it! I can't say I am too surprised with how mild it tasted. When L bakes me she treats each item we bake like a piece of art.  She adds pinches of this and dabs of that and stirs things with a little flare all her own.

We mixed all the ingredients together and tried the zucchini covered in the pie mixture.  It tasted super yummy! Once we had put the pie into the oven I turned to look at the disaster that my kitchen had become. I first saw one of my doggy girls snuffling at the floor below the island where we had been rolling out our pie dough.  She was frantically licking up any flour that may have made it onto the floor.  Apparently, she had been there for quite awhile, judging by the dusting of flour on her shoulder.

The counter was covered in flour and cinnamon.  My daughter was also covered in flour and cinnamon. She smelled a little like nutmeg as well. the kitchen basically looked as if the Tasmanian Devil from Bugs Bunny had made a trip through it.  Seeing this let's me know that L definitely had a good time!

The pie is cooling as we speak.  The warm cinnamon sugar apple smell is wafting through the house as the breeze blows through.  After I cleaned up from the pie I had enough energy left to make some meat sauce for our spaghetti dinner tonight.  And now I am out of energy and still need to get to soccer practice this evening.

Well at least I have the pie to look forward to later! Mmmmmm!

Time Flies

A person told me when I gave birth to my daughter that,  "The days are slow but the years go by so fast.".  Being young I didn't really give the comment much thought.  While sitting here thinking about my five year old I realize how true that saying really is. The last five years have flown by, filled with countless precious memories and fun.

This morning L and I went to her kindergarten open house.  She met her teacher, a wonderfully sweet lady, that I am sure my daughter will love. They had a full conversation about their flip flops. How cool is she? L is actually going to the same elementary school that I attended.  Some of the parents, at the open house, were people who I was in elementary school with. It was a very surreal feeling.  Walking down the long hall to L's room I suddenly realized that we were making the same long walk that I did with my mom to kindergarten.  We arrived at my daughter's class to find out that she is in the same classroom that I was in for kindergarten.  That was crazy to me!

We also rode the bus and learned about bus safety.  L met her school bus driver as well.  I loved the fact that her driver has been busing kids around for the last fifteen years.  That settled my little butterflies at the thought of my daughter riding in a bus with no seat belts. Ok, yes, I am being neurotic right now! Acceptance is the first step people! But I am sure that I am not dealing with any fears that a multitude of moms have dealt with for years and years about their babies going to kindergarten.

I was very proud of myself this morning.  I didn't get teary eyed even once.  That is amazing to me, truly!  I thought I might be a mess.  Now I can only hope that next Monday, the first day of school, will be the same!  Ok, so I know that's not really a realistic hope.  I just pray that I'll keep the tears in until I am safely in the car!!

Scary Moment

Brain Fog. It's a common side effect people with auto immune diseases have to deal with. To someone who doesn't experience this it may seem like a relatively small symptom when looking at all the symptoms that auto immune diseases may present with. An article on http://www.myadrenalfatigue.com describes it better then I would.

"Brain fog is described as confusion, forgetfulness, and difficulty concentrating. Often you may just not feel right, or you may feel a bit spacey. Sometimes people will call this having a temporary “senior moment” where you can’t seem to remember certain things.  For instance at dinner you might start to say “please pass the ….” and then you forget either the name of what it is you want or you simply can’t remember what it was that you wanted.


Some of the other symptoms of brain fog include:
1) Horrible short term memory
2) Difficulty with word finding and word substitution
3) Disorientation lasting 30-60 seconds ( You might be driving somewhere and you forget where you are and where you are going)
4) Loss of mental acuity
5) Forgetfulness
6) In ability to think clearly
7) A feeling that you’re in a fog or a dark cloud is over your head
8) Decreased attention span
9) Mild depression or anxiety
10) Lack of spatial awareness
11) Difficulty concentrating
12) Lack of focus
13) Confusion
14) Spaciness or Absentmindedness
15) Trouble learning new tasks
16) Trouble solving problems
17) Decrease in creativity
18) Decreased mental stamina"

I think it's fair to say that the every day person deals with some of these milder symptoms. I've had people tell me so. But Brain Fog is something different then the average person forgetting where their keys are. It can be scary, and unsettling, and downright frustrating as all get out. I am lucky enough to not have to deal with this very often myself. I do have the occasional days when I wake up and am not able to speak very eloquently. In my head I am thinking, "I need to get myself some cereal.  Get my daughter some cereal.  And pull the meat out of the freezer to de-thaw for dinner."  When in reality what comes out of my mouth is something more like this, "Mmmmm....food...need! Daughter....something. Dinner.....meat....Mehlmmmhhhfffff....." And once in a while I forget the name of something that I should know the name to.  My daughter had to remind me that the shiny metal thing hanging in the corner of her pediatrician's office was called a spaceship! That time it was a little embarrassing. Fortunately for me no one was in the room at the time besides my daughter.

On Friday night I had an episode of Brain Fog that I had never before experienced.  I was on the way to one of my friend's houses from a dinner out with them.  I was driving down the road when I suddenly couldn't remember where I was.  I still retained the knowledge of where I was going but I no longer knew what road I was on. The directions to my friend's house, where I have driven so many times I think even my car could drive there by itself, just floated out of my head. My brain was flipping through all the roads in the area trying to recollect something. Anything that would help. I drove in my car down the road frantically trying to get my bearings in the dark while I tried to keep myself from freaking out. I was just about ready to pull over when I drove past a street sign that was lit up, from above, with a street light. I managed to get to my friend's house after that. Once I was in my friend's  driveway I sat in the driver's seat shaking for a minute or two. The experience left me feeling so helpless and small.

Having gone through that makes me feel so comforted to know that we have a Gps stashed in both of our cars.  I think I may end up putting in the addresses of the places that I most frequently go.  So in the event that this would happen again all I will have to do is pull out my Gps and I will be good to go! I now consider my Gps to be a essential tool in my car!

On a Side Note

I went to Hershey Park with L and my cousins today.  We were there from ten until four.  The weather was absolutely perfect! Mama is beat! 

On the up side.... my new, absolutely loved, fantastic, deliciously comfortable sandals passed the "long walk" test.  I wore them the whole way through Hershey Park today and I didn't hear a complaint from my feet once! Ahhh, perfection!

Flip Flops

You guys!! Sometimes, my husband is just the best!!

When my husband and I got married we had the typical vows... "For better or for worse". That was before my pregnancy drama, before my never-really-figured-out hospital stay/health-scare, and before I was diagnosed with Sjogren's Syndrome. Having an auto immune disease changes things.  No matter how I may strive to lead a "normal" life things will always be different now, thanks to pills, weird pains, quirky accommodations, and low energy lulls.

To my daughter this IS just "normal life". She doesn't know any better. To my husband...well, this isn't exactly what he signed up for. Despite that, somehow he finds a way to deal with things graciously, in a matter of fact way, and helps me handle things better then I would on my own. (And the things he comes up with the help me surprises me at times.) Because in his words, "I said for better and for WORSE.". And he means it! He doesn't just say it flippantly.  His actions back up his words.

Flashing backwards... While we were at the beach we did an insane amount of walking.  The amount of walking I would not normally consider doing in one days time. But I figured, it's the beach, so I dealt with the swelling by putting up my feet when I got back to our beach rental. At one point during the week I mentioned to my husband that I wanted to get a really good pair of flip flops next summer.  I just love my "flippys", and can't bear the thought of getting rid of them! I just cringe when I think of wearing my comfy sneakers with a summer dress.

Moving forward to this week... We were in a sporting goods store and saw a rack of Nike flip flops. They all had little pillow soles and looked so comfy. I had to get a closer look at them and considered buying some for myself. I looked at the name and it was like they were meant for me.  "Nike Comfort Sandal" was written across the bottom. I could swear that I heard a choir of angels singing! Immediately after that my husband insisted on buying a pair for me! Isn't he the greatest? He's always trying to come up with new ways to help me feel better, or maybe just cope a little better with Sjogren's.

I've had the sandals for a few days now and just LOVE THEM! I feel like I am walking on clouds. OK, so it's silly to say that but they feel amazing! I haven't given them a long distance walking test yet, but they are certainly doing the job so far!

I love my sandals and my hubs!!


Link to Nike Comfort Sandals.

Ocean City Maryland

We had an amazing time at the beach.  My parents came to spend the first half of the week with us.  My husband's parents came the second half of the week. We spent the whole week at the beach and yet the two halves of the week ended up being two totally different beach experiences.

My Mom and I both made sure to be liberal with the suntan lotion, dealing with Sjogren's.  We also donned hats and hid under three umbrellas.  The chairs moved as the sun did.  Fortunately, the breeze that blew across the sand kept us from being hot.  Which meant no heat nausea or heat headache for us!! It was perfect! With the exception of the sand being everywhere. I swear my daughter and I found buckets of sand in the shower when we came back from the beach every day!  But that can't be helped.  And, honestly, if that was the worst thing I had to complain about with all the other things I could have been dealing with, I am SO ok with that!

We slept in and then played on the beach most of the day. Evening were saved for the boardwalk and riding the rides. We played mini golf, had lots of ice cream, and generally spoiled L.  Because, let's face it, if you can't be a little spoiled on vacation when can you?

One of my favorite moments of the trip happened on the beach. L and I were sitting in the sand letting the waves crash up over our laps. Just after one of the waves crashed over us I looked down and found out I had a hitch hiker on me.  A tiny little gray crab was sitting on the top of my toe.  He was waving his tiny claws at me as if he were trying to talk to me.  L was just delighted to see this and spent the next few minutes expelling peals of girly laughter. I really wish I had gotten a picture of it.  But I guess I should be happy with the other two hundred and forty picture quality moments that I captured that week!  Here are a few of them...

First dip into the ocean!

L's Opa dug lost of ditches with her.

Mini golf is a must at the beach!

Playing in the rain is even more fun at the beach!

We had to dig ditches to keep the waves away.

L dancing in a little pool of ocean water.

More dancing.

Waves!

More hole digging with Grandma.

Waiting in line to ride the dizzy drums.

Beautiful old ticket booth.

Fun house mirriors were the favorite on the boardwalk!

Amazing sunset the last night!

Sniff Sniff

We just got back from the beach yesterday.  It was our little family's last hurrah of the summer.  All year I've been simultaneously looking forward to the beach with excitement about our adventures and dread because it meant that kindergarten would soon be here. We had an amazing time! I'll update pictures and stories once I get the pics uploaded.

I decided to not take my Methotrexate this past week so I wouldn't feel like I had the flu at the beach, while trying to have fun with the family.  It was wonderful at the time. I took it again last night and it also happened to be the date that I needed to up my dosage.  Needless to say, my body was not at all happy about it.  And... OK truthfully, it's still not happy with it.

One of the biggest side effects from the medicine is fatigue.  I'm talking fatigue as in I-could-sleep-for-a-million-years and also fatigue as in I-have-no-energy-to-do-anything. (I felt like I needed to clarify both types of fatigue for you.) And when I am feeling both types of fatigue I get weepy. Like, I-need-my-Mommy-to-make-it-all-better kind (Yes, I know there's nothing she can actually do!!) of weepy and I-just-need-to-have-my-husband-hold-me kind of weepy. So this morning has been a treat for me!

Boy, I have been weepy! Weepy about family. Weepy about how I feel.  Weepy because L's first soccer practice, ever, is tonight. Weepy because kindergarten starts in just three weeks. Weepy because I can't decide whether I want to let L to ride the bus her first day of school (because she wants to but she will have a whole stinking school year to ride the bus.) or if I want to drive her because she will only ever have one first day of kindergarten (And I actually still remember my mom dropping me off for my first day ever). Weepy because I really don't have the energy to go to a play date this morning but I know that L and I only have three short weeks left to be included. Weepy because everything is changing and I don't handle change very well. Weepy!

*Sniff* I promise my next post will be happier!!