Saturday, August 28, 2010

And the Award Goes to...

I've been busy the last few days and haven't gotten the chance to blog about this...

The other day my husband was due to arrive home at any minute.  While I was wiping off L's face we heard the door rattle.  L became frantic to get away.  I held on because her face was so cruddy.  I can't even remember why. T got in the door before I was done wiping off her face.  L instantly broke into hysterical tears and made a break for it the second I let her go. She ran into our bathroom and slammed the door behind her.

Hearing that, T and I decided to just let her be and cry it out on her own. She doesn't always appreciate our presence while her "heart is breaking", as she's been known to say. We went about our business and ten minutes later we still heard her crying in the bathroom.  After a while we decided to go in and try to comfort her.  When we peeked out heads in we found this...

She was sitting in the sink while she watched herself cry! When she heard us she whipped her head around in surprise and smiled at us.  When she saw our astonished faces she swung back around and proceeded to cry again.  Expertly producing real tears at that!

Eventually she made her way out of the bathroom, wiped her face on her sleeve, and acted like nothing had ever happened.  "Who me?"

This one is destined for the stage!

PS- This will most likely be my last post for a few days.  I am taking some time off to spend quality time with the family before preschool.  Don't miss me too much!


Thursday, August 26, 2010

I Wouldn't Trade Any Of It


I hurt. I hurt badly! And to make it better... I have swollen feet, toes, ankles, knees, and fingers. I feel like I am singing the body part song.  But look at that smile! Dimple and all!

Since this is my girlie's last full week at home before preschool I wanted to make it special for her. Monday we went out with Nana for lunch. We left her work with pockets full of candy. Tuesday we had an art day.  Boy does she LOVE her art. We spent the day coloring, pasting, cutting, gluing, and painting.  L was in heaven. Yesterday, was her normal afternoon with her Grandma.  Grandma took her to the zoo. Today...

We met two of L's very good friends (Who's Mommy happens to be a good friend of mine. Yay for me!) at Hershey Park for the day. I knew going into this day that I would leave the park hurting and tired.  I did it anyway! *Sticking my tongue out* Yeah, so?  I knew I would end up like I have but it was sooo worth it!

We trekked around the whoooole amusement park. The kids had so much fun riding the kiddie rides. We ate lunch at a cafe where they have performances.  L was just in rapture.  She was amazed and awed by it.  After a while she couldn't help but dance right along with them. Afterwards some of the performers came over to chat with her.  I most definitely had more fun watching her then the actual performance!  I couldn't keep my eyes off her! After lunch we went to the water park. We finished off with some more rides. And a not-so-planned dip in the wishing pond, for one of our friends, thanks to L. (The picture was taken before the "dip".) There weren't many kids rides we didn't let them get on today!

On the way home L came out with an interesting piece of news for me.  Apparently, there has been a new person added to our family since I last checked.  Her name is "Window" and she is a good buddy of L's.  I can't see her because I lack the capabilities to blend in with all of my surroundings. See, Window, is apparently a little girl with camelion-like tendencies.  And she is very shy if you aren't blending in like her. (I wonder if this is a metaphor for my daughter not feeling comfortable unless she is conforming to everyone else.  And then I think "Nahhhhh!" There's no way that L even knows how to be anything else but unique. If there was a poster girl for marching to her own beat, that would be my L!) Enough with my musings.... Window loves being outside in nature.  Because, "Nature is allllllll around us!"", says L! Her favorite thing to blend in with is grass, which explains her proclivity towards nature. (Window's proclivity not L's though I'd like to see her try this.) I am wondering if we will be hearing a lot more about Window in the days to come.  Or was this just a passing fancy of my daughter's.  She has been known to do that.  She's comes by it honestly on her Mama's side!  But, seriously, where does she come up with this stuff?!?

So, yes, I am in pain.  Will probably be so even more tomorrow and maybe even the next day!  And I don't think that L will have even a vague idea that I am not feeling well.  I'd like to keep it that way.  I hope that she will never know exactly how I feel. Because it was all worth it.  I wouldn't trade any of it.  (Except for the unplanned "dip" in the wishing pond!) The memories we made today will last for a lifetime. The pictures, for even longer.

Next up tomorrow...a picnic lunch and a fishing trip with Mommy, Daddy, and Opa at a friend's farm, after dinner!  And possibly another post depending on how that outing goes!

Tuesday, August 24, 2010

Invisible Illness Week


Did you know that there is a National Invisible Chronic Illness Awareness Week?  This year, the National week will be September 13-19, 2010!  As part of the kickoff, Lisa Copen (founder of both IIAW and Rest Ministries) is encouraging bloggers who have chronic illnesses to fill out this survey.  It's to help raise awareness of Invisible Illness. 

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Sjogren's Syndrome. See here to find out more about this invisible illness.

2. I was diagnosed with it in the year: 2006 when I was 26 years old while taking care of my newborn.

3. But I've had symptoms since: 2001 I've been dealing with dry eyes and diminishing energy.

4. The biggest adjustment I've had to make is: Prioritizing what I want to do.  I can't do everything that I used to be able to achieve in the same day.  I have to spread it out according to how much energy an activity will consume. Though, admittedly, there are still times that I push myself too far.

5. Most people assume: That because my illness is invisible that it does not effect me nearly as much as a visible one.  It's also very easily forgotten since it's not staring you in the face.

6. The hardest part about mornings are: Trying to "shake off" my stiffness. Sometimes I hurt enough that I just want to burrow back under the covers and not get out of bed for the day. That doesn't ever happen since I have L around to get me going. It's also hard to not let her see how much I hurt some mornings. I don't want her to see me hurting if I can help it. At times it can be unsettling to kiddos to see that their Mommys aren't invincible.  

7. My favorite medical TV show is: I don't really watch medical shows. Stems back from the time when my Dad was into watching the Medical ER shows during dinner time.  Let me tell you that I must have an infallible stomach after watching that while eating my food. Blood and chest tubes don't go very well as a side to rare steak and asparagus!!

8. A gadget I couldn't live without is: My GPS... Because brain fog can be a terribly confusing scary issue when you forget where you are going, despite the fact that you might have been to the same place a million times! It's reassuring just having it in my glove box even if I never have to use it. I may remember how to get somewhere for the 105th time.  But on the 106th time I may need the extra little help.

9. The hardest part about nights are: I am usually very tired by the end of the night from all that I've done in the day.  Tired and hurting.  Night time is usually when my hands start to hurt.  Which doesn't make it easy to do the things I like during my "me time".  It's hard to edit photos or cross stitch with swollen hurting hands.

10. Each day I take __4__ pills __twice__ a day. This is a remarkably small amount.  I used to be on 3 more and have managed to get off of them. Some things I just deal with, for now, so I don't have go on more meds. 

11. Regarding alternative treatments I: Have not tried any.

12. If I had to choose between an invisible illness or visible I would choose: That is a hard one to choose. I have been on the side of things having a medical problem that can actually be seen when I had Bell's Palsy. It looked like the one side of my face was sliding off.  It's VERY humbling to know that people are staring at you because of how you look and that you can't do anything about it. On the other hand it is also frustrating to have people giving you looks because they can't see why you are being dropped off in front of a grocery store rather than walk the whole parking lot. I think I would rather choose what to have by the symptoms I would have with the illness.

13. Regarding working and career: I don't have to deal with that at the moment as being a mom is my career.  I had so many more career possibilities to choose from before I was diagnosed.  I will have to be careful about where I  work I return.

14. People would be surprised to know: That I try to hide how much I am effected by this illness on a regular basis.  My immediate family can see through the facade.  They know how to read my body language and see what I am really saying.  A few of my friends also have that ability.  Otherwise I try not to broadcast, in person, when I am not feeling well.  I feel completely comfortable talking about not feeling well on my blog or my Facebook headlines. I don't feel as comfortable telling someone that in person.  I never feel like the looks I receive sit very well with me, be it confused or sympathetic.

15. The hardest thing to accept about my new reality has been: My limitations. I used to have soo much more energy than I do now.  I am still trying to figure out what they are. 

16. Something I never thought I could do with my illness that I did was: Run a Moms meetup


17. The commercials about my illness: Don't exist.  Most people look at me like I have three heads when I tell them what I suffer from.


18. Something I really miss doing since I was diagnosed is: Being able to do whatever I want with out having to worry about conserving energy.


19. It was really hard to have to give up: See above question.  I am still working on it!


20. A new hobby I have taken up since my diagnosis is: Blogging.  It has made me feel as if I have a voice. And reading other's blogs has helped me as well.  I have definitely gained new insights.


21. If I could have one day of feeling normal again I would: I would do sooo many things with my daughter that I usually have to conserve my energy to do with her.  Or the things that hurt to do after too long. Fly to Alaska and play in the snow all day with her.  Take her to Florida and visit with my brother on the beach all day.  Sit on the floor and play Princess Barbies or build Lego's all day. Go to Disney World for the day and do everything a four year old girl could ever possibly want to do.  Now of course I wouldn't have the money to do all those things.  But, hey, if you are letting me feel "normal" again for the day you might as well give me all the money I want to do it!!!

22. My illness has taught me: Not to judge a book by it's cover.  As a teenager I remember asking myself why a lady was parking in the handy capped parking if she looked perfectly fine walking into the store. I have learned the truth of that the hard way!

23. Want to know a secret? One thing people say that gets under my skin is: Having people say..."If you think that's bad, I have to deal with this..." I mean come on if you are dealing with an illness I respect what you are going through.  Please don't try to trivialize what I am going through!

24. But I love it when people: To quote a fellow blogger..."ASK ME QUESTIONS.  I love when people ask me what my condition is, how it affects me, how a specific situation might impact me, what I do about problems, how I want them to help me, etc."  I ALWAYS welcome questions or comments in person, on my FB, or my blog about Sjogren's Syndrome!

25. My favorite motto, scripture, quote that gets me through tough times is: Philippians 4:4-9 (NIV) 
4Rejoice in the Lord always. I will say it again: Rejoice! 5Let your gentleness be evident to all. The Lord is near. 6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. 8Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 9Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.

26. When someone is diagnosed I'd like to tell them: Try to live life as close to "normal" as possible.  Being diagnosed with a chronic/invisible illness is not the end of it all. You just have to come up with your own new normal. 

27. Something that has surprised me about living with an illness is: How many times I have to explain what I live with having an auto immune disease.  There are so many people that don't even know what an auto immune disease it.


28. The nicest thing someone did for me when I wasn't feeling well was: My husband is fantastic about taking care of me when I am feeling down or having a bad flare. Foot rubs, giving me more "me time", telling me what I need to be doing when I know I should be and am not listening to my body, etc.  My friends are also good for showing up with random sweet teas from McDonald's, which I love!!  I've been brought to tears by that in the past. I know silly that the tears come over such smalls things.  But they make all the difference sometimes.

29. I'm involved with Invisible Illness Weekbecause: I want to further awareness of invisible illness even if it's with my humble little blog.

30. The fact that you read this list makes me feel: Like you care...about me...about furthering your knowledge of invisible illness. Which might not seem like much but the more you know the more knowledge you can pass on in totally unexpected ways... Thank you for that, from the bottom of my heart!!!


Lisa's IIAW website!

Monday, August 23, 2010

Oh That Girl!!


I recovered the other day from the nasty migraine I had.  I took some Excedrin Migraine and pumped myself full of caffeine.  I was successful in kicking the migraine's butt.  I was also successful in keeping myself up til four am the next morning before being able to fall asleep due to all the caffeine!  My husband was wonderful enough to watch L and let me sleep in til ten am the next morning. 

Last night I managed to get nine hours of sleep.  I was dead to the world, with almost no waking and rolling. That doesn't happen very often.  I woke feeling as if I had barely gotten three hours of sleep, however. To add to that I am dealing with yet another sinus headache. Where are they coming from?!? Although, I am far more willing to deal with a sinus headache then a migraine I would obviously rather not have to deal with either! I feel as if it's zapping my strength at the moment. I have very little energy today. I've been attempting to save it for lunch time.

Despite how I am feeling L and I had a delightful lunch out with Nana (my mom).  We went to a quaint little pizza place.  L was all wound up to have pizza for lunch only to find out that their pizza oven was busted.  That didn't stop her from putting a serious dent in her chicken fingers and fries meal! That girl is crazy about chicken!!

On the way home L decided to have a whole conversation that revolved solely around the buttons on her dress.  Believe me when I say that it's not a hard thing for my daughter to accomplish!  She would make an excellent candidate for a filibuster during a legislative assembly! She can be quite eloquent for a four year old but mostly she was saying....

"Button the dress....unbutton the dress...."

I should have realized that something was not right when I never heard her end this conversation with the words, "button the dress". When we got home I open the door to let her out and came upon a naked L sitting in her car seat.  There were so many things I wanted to say to her and just ended up saying her name.  Her FULL name. (You know what that means!) She was giving me her best wide Bambie-eyed innocent stare.  I could hear her thinking, "Who me?" in her head. Her dress was laying in a pile, forgotten until that moment. Her pink crocks thrown hapahazardly on top of the dress. Her only explanation...

"I was practicing my buttons Mommy!"

So I ended up using some more energy to dress my little girl for THE SECOND TIME today in that silly little bluejhean dress with buttons the WHOLE WAY down the front. Man does she keep me on my toes!!  But she sure does look cute in that dress. 

Saturday, August 21, 2010

Ugh

I have a raging migraine.  Nausea some dizziness. So not fun! I am having a remarkably hard time putting thoughts together tonight.  So I'll leave it at that...

Thursday, August 19, 2010

First Time Mom

OK, first I have to say that I am sorry if I ramble in this post.  Or if it doesn't completely make sense.  I've been dealing with brain fog for the last few days.  I wrote this post last night and saved it for today.  Just so I could read it again to make sure it wasn't too "out there"....

During my cake decorating class tonight I was asked if I would be taking the next class in the series.  I don't think I will be. The main reason I don't want to is because of my daughter. She is going to preschool for the first time next month. We didn't put her in at three because I felt I could teach her the things she would learn in preschool, having been a preschool teacher in one of my former job "lives". And of course we have meet-ups with our Mommy group twice a week.  So she has had sooo much interaction with other kids her age.  

I think she is finally ready for preschool.  Mommy, however, is not so ready for her to go.  I am not sure how it is going to go.  I am sad that I won't get as much time with her, like I get now.  I feel a little like an addict who is talking about another "hit". It's a new stage of life and I don't know that I am ready for it.  Because it will be so new I am NOT ready to commit to anything in the month of September unless I have to. I don't want to commit to something and then force us to follow through if this transition isn't going as well as I hope it does. So I tried to explain this to the lady who asked if I would be taking the next class.  I, seriously, shortened the answer to prevent her eyes from glazing over.  You don't get that privilege, because let's face it, you asked for it coming to my blog. Ha!

Once I had finished explaining things she replied, "Oh, I can tell you're a 'first time' mom!".  I have to say that I was a little offended by a comment like that. I do admit that there are things I did when L was a baby that I would probably not do with a second child.  How could I not learn from my first experience?  I don't truly think that I would feel any different about my second child going to preschool then I do about my first, though.  I don't think this is a "first child" thing. Should I have a second child I would be just as sad to loose the time I have with them.  Babies stay babies for such a short period of time.  Once they are toddlers they are so busy trying to be independent that they don't remain toddlers for long either.  Now I have a preschooler and she is so determined to be a big girl. Anyway, my meaning is that the time flies. I can't even remember my girlie as a baby anymore without looking at photos or videos.  How could I not cherish the moments that I have with my daughter or any child that comes along next?

Am I just insane for enjoying the time I spend with my daughter? I love thinking of new and interesting things to do with her.  Neat crafts to try. Incredible sights to see and experiences that make her eyes widen in amazement. Barring things that are dangerous, of course, I am willing to do quite a lot with her that some moms would cringe at.  "Let's throw toilet paper around the room and pretend it's a snow storm...sure!  How about we go outside and step in paint and make tracks across paper...let's do it!" I soak in her reactions and it makes it all new for me. If we would have a second child it wouldn't be til after L was in kindergarten.  That would mean that I would be at home by myself with the second one just like the first.  I think I would still be greedy for time with them once preschool came along.

And then I realized that really what this all comes down to is a case of misunderstanding.  Apparently the lady thought that I was having concerns about my daughter's transition to preschool. OK, yeah I could see that first child thing popping into her head immediately. Most of the time the first child syndrome includes worry about  how they will cope when at school for the first time. Will they be OK?  Will they make friends? And on and on. SO not the case!  At least I'm not worried about that yet.  I am starting to think this might be a "stepping process" similar to AA.  Step 1. Denial that your child is old enough to attend preschool. Step 2. Numbness and acceptance once you've filled out the paperwork and signed your name in blood.  As well as promising them a percentage of the next 100 pay checks you receive. Step 3. This involves me feeling sorry for myself that I won't get as much time with my girl.  And Step 4. I have not reached yet but I have a feeling will be the typical worries about a child's first day of school.  Step 5. is the final stage in which you drop your child off with a brave face on and promptly cry in the parking lot once they've stopped looking.

Anyway...I think L is going to LOVE preschool. I am worried about my transition to my daughter going to preschool. There's going to be a serious "withdrawal" period I will be going through and don't want to waste the time that I will have with something I don't want to be doing. 

Or....maybe I am just a neurotic Mom who can't let go.  The decision is yours to make because I am going to go look at L's baby pictures before I crawl into bed for the night!!!

Wednesday, August 18, 2010

I had my stress today.  They hooked me up and I started to hear the music from "The Bionic Woman" playing in my head. Yes, I know that thought might be a little dated for some of my younger readers. ...Sorry... I climbed onto the treadmill and began the test.  The only thing that irritated me was that they kept trying to have conversations with me while I was out of breath.  Who wants to have a conversation while they are trying to climb an inclined treadmill, designed to feel like a mountain, and BREATHE all at the same time?!?!? 

Seems like everything looked pretty well.  I am having premature ventricular contractions (PVC's). Which means that my heart is beating before it should.  Fortunately, I am not having this problem all the time.  They happen in clusters.  I will have them for about two months and then they disappear again for awhile.  While I have them I experience chest tightness, dizziness, chest pain, even more tiredness than I usually experience, etc.  Not fun. So at this point they have no idea why I am having the pvc's.  They don't really know what's causing them either.  They do know when I feel the "episodes" that I end up with 20,000 extra heart beats out of a 100,000 from the heart monitor that I wore for twenty four hours. 

So now that the stress test is done and they know that exercise doesn't cause it, they are apparently leaving "it alone". I am just suppose to "deal with it" until I can't stand it any longer.  Tends to leave a person cranky and disappointed in the medical system after hearing that.

Now I'm just crossing my fingers that my body doesn't hurt too much tomorrow because of the test.  At least I know most of my friends will understand if they see my vegged out in a lawn chair at our play date!

Friday, August 13, 2010

Kids...



I love to listen to little kids talk! Their conversations are such a strange mix of child and grown-up all rolled into one. I especially love when they say things and don't even realize that in "adult language" are down right hilarious! Then they end up standing there looking at you like you've grown two heads, while you roll around on the floor laughing hysterically, all the while trying to figure out what they said that was so funny.  In my daughter's case she usually tries to re-create the scene over and over again just to get a laugh out of me.  To her an adult laugh, my laugh, is VERY addicting!!

For some reason L just noticed that some cars have car racks on top of them.  She didn't know what they were called and spent about ten minutes trying to describe to me what they were so I could figure out what she was talking about. Ok, so I already knew what she was talking about but I just wanted to see how long she would be willing to talk to get her point across.  Yeah, I know, the things I do to my daughter! Ha! Boy, do I have some pictures! Anyway... She seriously talked about car racks and pointed out which cars had them and which didn't for a good ten minutes in the car. Finally she brought the subject around to our car rack. The conversation was ended with an innocently hilarious comment...

"Mommy, you sure do have an awful big rack!!..."

I was very glad I knew where I was driving because I laughed so hard I started tearing up.  She sat in the back very perplexed and kept repeating words to see if I would start laughing again.  Then she gave up and I heard her say...

"...On the car that is."

I thought, Well thanks for finishing that sentence Honey!

Seriously, kids say the funniest things!  Since L started talking my life has been so much more interesting!  She makes it ALL worth living for, EVERYTHING!!

Monday, August 9, 2010

A Sweet Day


I've just started a cake decorating class with my Mom.  It was part of my 30th birthday present from them. It was a little daunting the first night.  We have to consistently squeeze the icing bag to decorate.  That's an obvious! What I didn't think about is that it's a killer on my hands. I am hoping that the more I do it the easier it will get on my hands. But I think I've got it down.  I'm looking forward to what we'll learn in this weeks class.



L and I go busy this morning making a cake and some cupcakes for my upcoming class.  I pulled out a standing mixer that was my husband's grandma's. I have never really needed to use it before now.  I thought I should give it a whirl (Pun intended! Hardy har har!).  I was afraid if I had to use my hand mixer for 8 minutes to make icing and then practice icing with the icing bag that my hands would really be hurting!  I have to say I loved using the mixer.  And L loved helping me crack the eggs, pour in the mix, etc.



Then I began to make my icing that is needed for class this week.  (Apparently this recipe can stay good for months as long as I use water instead of milk in the recipe.)  I got half way through putting everything in the bowl.  I was just about to add the shortening and realized that I really hadn't used it in quite a while... A loooong while!  It was a year and a half over the expiration date.  So I had to put that to the side til I get some more.


Then I got out some pre-made icing to practice what I've learned so far (the little stars).  And then practiced what I'm suppose to use in class next (the wavy lines to the right.)


L's favorite "grown-up show" is The Cake Boss.  So she made me swear that I would show her whatever I learned in class.  She was glued to my side when I was practicing.  Seriously, I thought I was going to need a spatula to peel her off me! She couldn't wait to try it out herself. And per normal she took what she saw me doing to an all new level.  (See the "person" below)

After we were both done "practicing" I cleaned up the mess my kitchen had become. When you have a tiny kitchen even a little mess seems huge. Fortunately for me, as you could see in the top picture, L was more than happy to help me "clean up"! While I was cleaning up the icing bag I managed to help my garbage disposal eat one of the icing bag tips.  Insert sniffling sounds here, please!

We did manage to have a good morning filled with sweet fun.  And we made quite a few memories with some great pictures as well! Now I am going to go rest my hands for the night and hope my friends forgive me for not doing more photo editing.  I think I've tortured my hands enough for one day.

Thursday, August 5, 2010

Out of the Mouth of Babes...


A conversation that I had with my daughter tonight, about the movie Shrek, turned into a life lesson for her AND myself!

L... Mommy, Fiona isn't very beautiful as an Ogre.
Me... Maybe she is beautiful inside.
L... Where inside?
Me... Her heart might be beautiful.
L... Is it decorated with love?

Firstly, I say....How sweet is she?!? Obviously we are trying to instill a belief in our daughter that just because a person might not look beautiful on the outside doesn't mean that they aren't on the inside. It's pretty much something every parent hopes that their kid "gets" sooner rather than later in life. 

I could bring up my Grandma as a "case subject".  L calls her "The Mama" to differentiate between her Grandma, and both of my Grandmas. What can I say? She's very very loved. Good thing! Anyway, my Grandma can give some deadly looks without ever knowing that she has. She still wears curlers to bed to curl her hair from "back in the day". If she finds sneakers that she likes at yard sales and they are too tight, no problem, she just cuts the tips of the sneakers off.  Then jauntily walks around with her toes poking out. My Grandma has been known to... wear polka dots with stripes, buy baby blue leisure suits, match hot pink and mint green, and wear toilet paper doily covers as hats. All this having been done while she was completely totally unexplainably sane. Seriously, could I make this up?!?

But.....She has the biggest most beautiful heart I may ever have the privilege to know! I have spent hours in her basement slathering on shaving cream, Ben Gay ointment, and baby powder into her legs in an effort to "heal" her, while she studiously read. That was during my I-want-to-be-a-nurse-when-I-grow-up phase. My cousins and I have gone on countless treasure hunts and had many auctions at her house for the holidays. I was allowed to explore her attic and basement for hours at a time, letting my imagination run wild. She has donated her money and countless hours to various causes that she felt deeply about. She is the most Godly woman I know and her heart is truly pure.  I could go on for hours if we had the time.

L is too young to appreciate my Grandma's example as of yet. I am  assuming that my Mom will be around for many years to carry on my Grandma's fantastic example of "Grandma-hood" for L. So for now I kept the lesson I could teach her as simple as possible. 

After thinking about this all later I came to realize that I could quite possibly admit to being a little hypocritical about this. I have gained a few pounds in the last year.  Sometimes my ankle cracks when I walk.  My hands and feet swell. I unconsciously groan as I get up from the couch at times. And I don't always have the energy to care enough to dress semi-well if I am staying in all day with L. So knowing all this there are times that I can get drawn into feeling wholly un-beautiful.  Who could blame a person for this?

I've realized that I shouldn't let myself fall into this thought.  Because even if I have big black and blue bags under my eyes and sausage fingers...my heart is still "decorated with love".  Love for my God, family and friends.  Love for the simple things in life.  And more love than I know what to do with coming back at me from my family and friends. My daughter being the biggest most beautiful conduit of all.

How can anyone feel ugly once they've thought about all the love their hearts are decorated with?!?
 

Tuesday, August 3, 2010

My Relationship With Doctors



I was laying in bed trying to sleep.  That became futile once my brain took over and started thinking about things. I have a cardiologist appointment next week.  I've been anxiously waiting for this visit for quite a few months now.  It's gotten me thinking about my evolutionary relationship with the doctors I've interacted with. 

In middle school I was playing a hard game of softball in gym class. I hit a homer, was rounding second base, and my knee decided to do it's own thing. I went to my family doctor.  I was rarely sick as a kid so if my doctor said something I naively thought it must be true right?  My family doctor told me there was nothing wrong with my knee, despite the pain I was in.  He thought I was looking for attention and playing up a minor injury. By the end of the week I could barely put weight on the leg, so my Mom decided to get a second opinion. Turns out I had seriously dislocated my knee cap and ended up doing a whole summer's worth of rehab on it. That began my tumultuous relationship with doctors. 

Being so young, I was rather impressionable.  I began to wonder if I was just over reacting to everything when I felt sick. I wondered, was the doctor right, was I just looking for a reaction? Did I need attention that badly? Every time I was sick I would wonder if I should down play how I felt thinking that maybe I was just some hypochondriac kid, who didn't know any better. I still feel that way some times today. It makes me step back and ask myself if I am just being silly or could it be something that I need to see a doctor about.

Shortly after having my daughter my Sjs symptoms started to show. I saw so many specialists. I felt like I was passed around from one to the next. I was afraid they were all writing down "delusional watch out for this one!" in my charts. Many of the doctors wrote me off as having post partum symptoms that would resolve on their own. Going through that time period helped me realize that we as patients have to be our own advocates.  If we aren't there are too many doctors out there now, spurred on by time and money, that would rather just give you some meds than listen to what a patient has to say.

The shining moment came when I met my rheumatologist, "Dr. A." She helped me piece the puzzle together. I began to realize that there was actually a reason for my symptoms.  I wasn't dealing with post partum.  I wasn't a hypochondriac.  I wasn't crazy! Nothing was too small to be overlooked by her.  She slowly helped me realize that a patient deserves to be listened to. To be treated with respect and not just become another textbook crazy person. She's given me hugs, held my hand, and encouraged me when I have felt at my lowest.  In her eyes, there is always something that can be done to help me.  There is always extra time to help me figure out my latest health conundrums.

So that brings me back to the cardiologist appointment I have next week. The cardiologist I saw previously came in to my appointment and had already diagnosed me without even speaking with me.  I threw a monkey wrench in his plans once he had read the halter monitor that I had to wear for him.  20,000 extra beats in 24 hours isn't good under any circumstances. When I went in for my follow up he said that he "couldn't really figure out what was wrong.  He would be retiring shortly and didn't feel the need to deal with me anymore.". That's encouraging right??? I have an appointment with a new cardiologist this time. Thank God for that!  I am hoping that she's as great as my rheumatologist. Yes....hope.... "Dr. A" has given me hope.



Photo found here.

Monday, August 2, 2010

The Westwynd Inn

Driving down the little stone road the first time, my husband and I wondered if it was actually leading us somewhere. The road looks like a classic country path surrounded by trees, as it is. On this visit down the stone path we knew where we were headed and couldn't wait to get there!

The Westwynd Inn is located five minutes from Hershey Park, the zoo, downtown Hershey, Giant stadium, and The Hotel Hershey (where the spa is located).  You would never know this after finding your way to the end of that little stone road.  It's as if you are in a country of your own. Safe and protected in your own little bubble of pure bliss that is the Westwynd.  The inn is located on a 32 acre horse farm. The views are picturesque enough to belong on the front of a post card.

 Upon entering the inn, we were welcomed by Carolyn the owner and made to feel at home right away.  We didn't need a tour this time, but I would recommend it to those who are going for the first time. The inn is covered in antiques and trophies from the horses they have owned and stabled. You would think, hearing the word antiques, that it is a stuffy place to go.  Somehow they have it decorated like that and yet it still feels as if you are at your own home.  Or a home of a favorite aunt who wants to spoil you rotten. The guest fridge in the basement is filled with any drink you could imagine.  There are also snacks to be had should you need a late night snack. And if that isn't enough the candy bowls filled with chocolate through out the inn or the complimentary Hershey bars in your room should definitely help as well!


After you've had your snack guests are encouraged to wander around the farm. T and I always like to eat our "picnic" dinner by the garden waterfall.  It's peaceful to hear the water splashing and the resident bull frog singing. The house is surrounded by flowers in a beautiful array of colors. Every time I've finally thought that I've seen them all I find a new patch of flowers somewhere else. My favorite spot around the house would be the quintessential porch swing on their wrap around porch. I loved watching the horses in the pasture as the lightning bugs came out to play. 

We got a room off to the side of the inn.  It was a fantastic room to stay in.  Plenty of space, beautifully decorated, and furnished with a huge jacuzzi tub.  The candles they set out in the room and the wine offered were the perfect romantic touches.  I loved the tub so much I laid in it and read my book for almost an hour the morning we were suppose to leave.  I went in stiff from my Sjs and came out feeling wonderful.  Like my bones and muscles had all melted while in the tub.  I really think I NEED one of those tubs!!! Honey.... please??? OK, yeah I know!

My favorite park of the whole place would be the barn.  They quite possibly have the most friendly barn cats ever.  I felt like the pied piper of cats.  They followed us around the barn, chirping at us, because they wanted more petting. The horses weren't much better either.  My buddy, Dillan the horse, acted like a dog.  He leaned into me where ever he wanted scratched.  He enjoyed me scratching his ear so much that he was leaning all the weight of his head on my hand!  They also have goats, Pygmy goats, two dogs (very friendly), Mickey the resident donkey, two miniature ponies, Taco & Paco the alpaca, and many many horses to pet and spoil. We were out in the barn for feeding time. So we were allowed to help feed the alpaca from our hands.  It really was a neat experience.  And they are the cutest animals!  I had so much fun we ended up spending an hour and a half in the barn with the animals. I was definitely having a problem keeping my attention on one thing for too long.  There was always something new to look at.

Breakfast is, of course, included in the night's stay.  In the morning I had THE MOST fluffy light pancakes that I have ever eaten. Mmmm... My mouth is literally salivating just thinking about them.  Come to think of it I need to keep that thought in mind next time my mouth gets so dry from the Sjs!! Instant salivary gland therapy for me! Johns Hopkins new Sjs department should start doing research on that now!  Anyway, back to the subject.  We were also served fresh local fruit, freshly baked bread, and grilled sausage to go along with the mouth watering pancakes.

When we arrive we leave everything behind us.  No computers, cells, or anything that reminds us of our busy lives. I always leave feeling rejuvenated. I feel better mentally as well, it helps me forget any recent troubles I may have had with my health. It's completely relaxing and makes us feel as if we've been there a week. So, when it was time to leave I am always very sad to go.

Before we left I mentioned how much my daughter would love to see the horses at the farm. We were promptly invited back to just come see the horses.  L was sooo excited about the invitation to go. She's started a count down till we are planning on taking her.

Now I'll leave you with some of my favorite pictures from the Westwynd Inn. It was hard to just pick a few!