Saturday, January 28, 2012

Painting

We just spent pretty much the whole day painting one of our bedrooms.  (L thought she was the biggest deal because we let her paint, on the wall, with a little water color brush before we painted over it.) We'll be moving my baby girl into a bigger bedroom so we can combine her bedroom and play room into one. There will actually be a real live guest room for guests! L is super excited to have the new room and a new loft bed to go in it. I'm holding off on pictures until I have the room completely set up.

As I'm sure you've guessed, painting all day has left me hurting and with no energy. All the up-the-ladder-down-the-ladder moves, the sitting on the floor, and using the paint roller has me feeling like I have the flu. It's the type of aches and pains that don't improve no matter how much you change your position on the couch.

But, as I am prone to say, it was worth it to see the excitement shining in my daughter's eyes today as she watched us. For her, I'd suffer anything.



Thursday, January 26, 2012

Alert

Just as a warning to everyone... I've gotten bored with my blog design so I will be changing it up a little bit in the next few days. Nothing to worry about.  Just a little nip n' tuck. :o)

Shout Out

I was reading a post entitled "Helping the Person With a Chronic Illness" over at  Thoughts and Ramblings on Life, Love, and Health.  I found it to be poignant and so very true. I wanted to share the post because it has many helpful tips for those who live with people who are chronically ill. By saying "live with" I mean those who have relationships with chronically ill people, be it friendship, marriage, co-workers, or family members. 

I couldn't have written this more honestly or eloquently if I had tried. So please take the time to read the article below that Christine has written.  And maybe even take some extra time to go check out her blog here.


"I have had a chronic illness called Sjogren's Syndrome for approximately four years. I say "approximately" because in my mind, that was about the time my noticeable symptoms began to have an impact on my level of functioning. Looking back, it certainly seemed that the Sjogren's may have been lingering for years before that. I didn't notice though because I was too busy living my life.



Sjogren's Syndrome, like all autoimmune diseases, is a chronic illness. That means that it is always there. It is not like a cold, broken bone, or flu where you get treated, feel better, and continue on with your life in the usual manner. It is always a part of your life, every single day. Like a roller coaster, it has peaks and valleys. Sjogren's Syndrome also has the great misfortune of being an "invisible illness" which means that its devastating effects usually cannot be seen or noticed just from looking at the person. Maybe not by speaking with the person either. A person who was seen at a social event and appeared "fine" may be updating their Facebook status six or twelve hours later stating how sick they are. It's not an exaggeration or a plea for sympathy. Just the way it works.




I believe that I have worked very hard at being a person who does not solely identify herself by her illness. I think for the most part, I have succeeded at this. However I also believe that I am at a crossroads with this issue. In an effort to diminish the impact of Sjogren's on my existence, I have turned a blind eye to some of the unique and difficult situations that can arise in my life and in my relationships while living with a chronic illness on a daily basis.



As I have progressed through my Sjogren's journey over the past several years, a lot of things have changed for me in terms of how I deal with the illness and just as importantly, how those around me deal with my illness. When a person first becomes ill, they are oftentimes fortunate enough to have a flock of people supporting them and cheering them on. The problem is, the illness does not go away. The months and years tick on and the initial rush and zeal to support the person diminishes, usually at a time when they need it the most. In most recent months, I have had the blessed opportunity to meet and develop relationships with other people who have either Sjogren's Syndrome, another autoimmune illness, or a completely different chronic illness. The common theme I hear is the difficulties in managing our illnesses on a long term basis and the effect that the illness has on our relationships. As I form these connections, read other blogs, and network, it has become more and more strikingly clear to me how different our lives are from our non-chronically ill peers and how this can set us apart in society.




I am discovering more and more lately that there are certain needs, expectations, and beliefs that I, and many people like me, have that are not being met or understood. I have some theories about why this is. I also have some suggestions on how a person can be a support to someone with a chronic illness. Some I will keep to myself in the interest of continuously trying to understand the other perspective of what it must be like for the people in my life and some I will share because I live in the belief that most people are well intentioned and as chronically ill folks, we don't always know how to speak up for ourselves and what we need. Therefore the people in our family, friend circle, workplace, and community sometimes don't know how to be a part of our lives when dealing with us and our chronic illness.




As human beings with a chronic illness......




*We do not want to be defined by our illness or whatever diagnosis we may have. We are very aware that this may appear to be the case sometimes as illness is a frequent topic of conversation and a very real issue that needs to be managed on a daily basis. But really, it is not any different than discussing what consumes a lot of people's time in general such as children, pets, hobbies, ailing parents, and jobs.




*We recognize that it is VERY difficult to be in any type of ongoing human relationship with a person that has a chronic illness. We know that and we spend a lot of time worrying about it. Plans get cancelled at the last minute and unpredictability is our new friend. We appreciate flexibility and spontaneity. Taking an unexpected ride to Walmart or Barnes and Noble? Call us. Even though there is a good chance we might not be able to go, the feeling that someone put forth the effort will stay with us, indefinitely.




*Time and energy are valuable to us. It is not helpful to question our decisions in regards to how or where we chose to spend our time. We know everyone has crazy, busy lives but oftentimes the one thing that makes the difference in whether we can socialize or not is if you can come to us. Our homes may be a mess, but the appreciation for the effort will be lasting.




*Please don't ever tell us we "look fine". It's a well meaning statement but it just adds to the frustration of trying to exist in a world that does not understand how we can look so normal on the outside and be in hell on the inside.. But feel free to compliment the latest haircut! Or the new pedicure...




*Many of us with a chronic illness are riddled with guilt about burdening others and we therefore do not always know how to ask for help. We do not want to be perceived as needy or overly demanding to those around us. Yes, it is our responsibility to let our loved ones and friends know when we are struggling more than usual, but we also need others to take some initiative. Don't think about it. Do it. Anything. I would be thrilled if a friend called me and said they were stopping by for a few minutes with a couple of magazines on their way to another destination. A quick smiling face can break up a very long day.




*Many of us have partners, spouses, children, parents, and friends who help take care of us when the going is rough, which could be on a daily basis. Please remember them. It may be helpful to keep in mind that not only do they have jobs, families, and other obligations, but they are also the main support person for the chronically ill person; which can be a whole other job in itself. Try not to assume that because a person with a chronic illness lives with someone else, that the person, or their caregiver, does not need support.




*Never underestimate the power of a phone! Or open up your laptop and send a message. Know what is going on. It's hard for us to hear statements like you don't want to "bother us" or "wake us up". We know you mean well, but we are smarter than you give us credit for. We turn off our ringers when we are resting! It is more important for us to know that people care.




*Be our friend. Or don't be our friend. That's why some people are just acquaintances and that is OK. It's not easy to have a friend with a chronic illness and it can be much more challenging than your average friendship. And don't forget about us when events and get togethers come up. It is easy to assume that someone who is frequently ill won't be able to attend something, but let us make that decision! We don't want friends just during the tough times. We want them all the time! If you do feel that you cannot commit to being an emotionally supportive and present friend, then do what is best for you and move on.




*A lot of us with chronic illnesses struggle with issues around sleep, pain, and side effects from medications. While the rest of the world is buzzing away on a daily basis, these issues are a setup for isolation and loneliness.  It can be a very rapid decline from coping well to depression and hopelessness. Never underestimate the power of humor, a hug, or a kind word.




I hope this is helpful.


It is often said that it take a village to raise a child.


True enough.


I also think that it takes a village to support a person with a chronic illness. Maybe that way of thinking is not fair as we all have our own unique challenges and obstacles in life. For me, my experiences with needing the help of others are due to the fact that I have a chronic illness. But it's not just about a village or community supporting those with chronic illnesses. It's about us supporting each other as human beings. Because at the end of the day, in my opinion, that is all that really matters.
"

Wednesday, January 25, 2012

The Great Debate

As I've previously written about, I am looking for a job.  I have gone on various different interviews and have no job to show for it as of yet.  I am sticking with the thought that those were just not jobs that I was meant to have.  

(That's right, Kristen, keep thinking positively!)

With these various jobs there always comes one moment that leaves me with questions.  Should I disclose my auto immune disease to this possible employer? I have always chosen not to.  Not because I am a shady person and like to hide things.  In fact, I hate hiding things.  I'm pretty much a "what you see is what you get" type of person. I have not chosen to disclose my health issues because the jobs I have applied for have never been jobs that I would have worried about my health interfering with. They have all been desk jobs, which means that they are safe for me. Desk jobs would allow for me to "power through" any flares I might have and continue with whatever is expected of me. Since that would be the case I didn't feel that the prospective employer actually needed to know about my health. It is a rather personal thing, after all, to have to explain to a complete stranger face to face.

Today I had to break with tradition and tell a possible employer about my health.  I just applied to work as a blog writer for a home decor company. I would peruse through home decorating blogs, find the latest trends, and then blog my opinions, as well as a few marketing responsibilities. Which is something that I already do on a daily basis, sans the blogging about it part. Because this is a writing position I needed to share with them the blog that you are reading now, as an example of my writing/blogging abilities. 

In the e-mail that I sent out with my interest letter and resume I explained what I blog about.  At the end of the explanation I felt compelled to put a little note...


"To which I'd like to clarify, having an auto immune disease will in no way impede my ability to do this job for you, should I be hired."


Ahhhh!!!!  Boy does this make me nervous!!!  I feel like this job would be exciting for me and that I would be great at it!!  A) Loves home decorating.....Check. B) Loves to blog.....Check. C) Loves to read other's blogs......Check. But, I am soooo nervous that by disclosing my health issues ahead of time that I may have lost this job before I've gotten it. Only time will tell.

Have you disclosed your health issues to a possible employer?  If so, did that help or hurt you in regards to getting the job?

Friday, January 20, 2012

Tooth Fairy...Duhn Duhn Dunnnnn....

Wow!!!  We were out to dinner tonight and suddenly realized that my baby girl's first tooth is loose! (With the other tooth popping out of her gum already)  This freaked my daughter out and she cried off and on through our whole dinner out with both sets of grandparents. *Sigh* She gets very anxious about things!

Me? I'm not anxious, just sad that my baby is growing up.  But I am also excited that I get to play the Tooth Fairy!!! Yay!!!

Thursday, January 19, 2012

Bobby McFerrin - Don't Worry Be Happy

Yesterday, I decided to be brave and share my "Tis the Season" post with my friends and family.  In response to this one of my best friends sent me a video that made me smile from ear to ear....


Wednesday, January 18, 2012

Tis The Season

Yes, yes, I do know that Christmas is over.  That always seems to be part of my problem.  I don't mind that it gets cold and dreary in November and December, because I have holidays to look forward to. But January comes and slowly, very slowly, the winter blues creep into view. No holidays, not enough Vitamin D in the sunshine, and no outdoor time, it all makes for my "winter blues season". I feel like it's my inner monster trying to get out.

When I feel like this it's hard for me. I am usually a very social person through out the year.  When this time of year hits I stop wanting to go out and be social.  I stop trying to text friends and make plans with people.  I look forward to the activities I have planned with mixed feelings, regardless of who they are with. I don't want to go out, but I know it's good for me so I make myself, and once I get wherever I am going I enjoy myself. 

As far as having a good time goes, I am still able to. My joy just has a ceiling to it. Things just aren't as fun right now as they usually are. As if other times of year I am told I can enjoy cake and ice cream together and this time of year I am told that I can only enjoy cake. Or, it's almost like watching TV. Through out the year I watch my husbands high definition TV with his crisp HD channels.  And then winter comes along and it's like I am watching TV through a wash of fuzzies on the screen that are preventing me from enjoying the whole picture.

While I write about this I am becoming increasingly more embarrassed. I am putting this out there for everyone to see and sharing something very personal.  I feel wholly vulnerable in this moment. Uncertainty as to whether I will actually share this blog with my friends and family reigns.  (Some of them do read my blog of their own accord but many others only read when I let them know that I've written a post.) I am crippled by my worries over what they might think of me. It remains to be seen if I am brave enough to put my short comings on a "neon sign" for everyone.

I know what I need!  Everything would be better if there was another big holiday added in January.  A getting-together-with-friends-and-family-holiday.  While we're at it why don't we make it a chronic illness holiday just for fun.  We can sit around drinking copious amounts of liquid to keep our mouths from going dry for the Sjoggies.  Blankets, scarves, gloves, and hats, will abound for our Reynad's friends.  And there could be just as many gluten free desserts as there are normal ones for those with Celiac Disease. Who do I talk to about this?!?

Saturday, January 14, 2012

Today

What a fantastic day spent with family! Four hours of driving, Christmas gifts, mad games of SPOONS, and laughing til I cried (on several occasions).  L behaved wonderfully. I am now crashed on the couch trying to beat off exhaustion.  But it was worth it!

Thursday, January 12, 2012

Product Review?

Today, I received an offer to blog about an organic feminine lubrication product.  Ummm..... I am guessing they don't know that my father reads this blog!!!!!  He'd be scarred for life! As far as he's concerned my husband and I have only had "that kind of fun" once. Once!!! And somehow the stork brought us a daughter. 

While I would love to try a product and blog about it for every one else's benefit, I don't know that I would be able to write about it delicately enough to let me feel comfortable about it.  I will have to think about this....

Either way I got a really big chuckle out of the whole idea of a "product give away"!

Tuesday, January 10, 2012

Tired

I have now been on Ambian for about a month.  It has succeeded in helping me to sleep, eight hours, straight through the night. It's fantastic to not be waking up so much.  Now, that I have begun to sleep so well I have been expecting to wake up one morning not feeling sleepy/tired/fatigued/low on energy/whatever you want to call it. Unfortunately, that just hasn't happened yet. I am still waking up feeling exhausted. Which, was the whole reason why I decided to go on the sleep aids, in the hopes of feeling rested in the morning after a good night's sleep.

This has left me with questions. 

  • Is the medicine really making me sleep as well as I thought?
  • Do I need to try a new medication to see if that helps?
  • Or am I just going to wake up sleepy no matter which sleep aid I am on? 
  • Which leads me to wonder if I should even bother being on the medications.

I guess I have an e-mail to write to my rheumatologist to discuss this all with her.

Monday, January 9, 2012

A Quote

I just came across this quote today and love it..... 

"Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."
Susan Sontag

....This could be taken in different ways.  As, for me, it gives me hope.  Because if I am using my a  passport to go somewhere that also means that I can go back to where I've been.  And though I know I will never get back to "where I've been" with my health, there will always be days to look forward to. Days that I will feel close to my "normal".

Sunday, January 8, 2012

Busy Day

Yesterday we had family time at the Farm Show in Harrisburg.  It's an event we look forward to every year.  I would imagine it's similar to a state fair that people have in the middle of the country only it's done indoors.  Pennsylvania has held their farm show for 94 years now.  We get to go look at farm animals, feed them, touch them, and generally aww and ooh over them with our daughter.  One of my favorite parts is the food!  They bring in vendors who sell completely food.  And that makes it super fresh and soooo yummy!!!

Another part of the farm show, that I do not particularly like, are the crowds.  Everywhere!! Which means that a facility that would usually take an hour or so to walk around takes two or three hours to walk around with soooo many people doing the same thing. Which also means abuse on my body. So, I was hurting when we got home and I ended up collapsed on the couch, falling asleep almost immediately. 

Later in the evening I went out with friends, to the movies, to celebrate a birthday. I knew I really should have stayed on the couch, but we've had it planned. So I spent three hours in the theater seats trying to keep my body from stiffening up on me.  I always end up hurting after sitting in the same sitting position for so long. I knew I would end up feeling worse but, yes, I did it anyway. Needless to say I am spending my day on the couch recouping from yesterday.

Happy couch time!

Wednesday, January 4, 2012

You Tell Me...

I went to the store, yesterday, with a list of things to buy. One of the things was the WHOLE reason why I went to the store. And, of course, that was the thing I forgot to buy!!!! 
Now I ask you, was that the work of brain fog or just a busy moms overworked brain? Ha! I think that could be a little of both playing tricks on me!

Tuesday, January 3, 2012

I'm baaaaaccccckkkkkk! After I got off the computer, yesterday, L and I spent the rest of the morning having fun. 



We played a little Operation.  Which my daughter lost and then promptly spent the next twenty minutes having a fit about because she didn't want to admit she lost. It was highly entertaining.  I sent her up to her room to sulk rant rave express her displeasure somewhere that I didn't have to be met with it full on in my face. Ten minutes later she came downstairs to admit that she had lost.  Even though I think she really, in her head, maintains that "She won!!! She won! She won!!!!!!", because that child of mine did everything in her power to not state, in a normal range and tone of voice, that she lost. So we spent another five minutes trying to actually get the phrase, "Yes, you won Mommy." out of her mouth.  Without mumblings, whispering, and or having a body part covering her mouth while she said this.  Sheesh.  It was painful, but important to me, in the process of teaching her how to be a good sport.  She got frustrated enough that she went back up to her room for a little while. 

You would think that after that battle of wills that my mood would have gotten worse.  And maybe it would have had my daughter not decided at that moment to exert her Independence, after our battle of wills, and come down the stairs in nothing but her undies and a pair of fuzzy purple slippers! After the great reveal of her newest choice of attire she proceeded to do the most awkward, funkiest little dance while singing her very own made up diddy. Needless to say, I busted out laughing which managed to A) diffuse our little "battle of wills" situation and B) knock me out of my funk.  Thank goodness for stubborn little girls and their perfect sense of timing!

The rest of the morning was spent snuggling while watching movies, reenacting an epic dancing ballroom scene from the movie Enchanted, and decorating paper dolls.

Monday, January 2, 2012

Eeyore



Ppppssssttttt....... Hey you! Yeah, you! Can you keep a secret? My little secret is that I am slightly a little  a tad grumpy when I don't get enough sleep.  And I am a big ol' grump when I don't get enough sleep and the "winter blues" start creeping their way in!  As in, I am a veritable dragon lady! OK, OK, I give, so this may not truly be a secret.

Anyway, the combination of sleepiness and winter blues makes me just cranky.  And grumpy. And gives me a why-bother-trying-it's-not-going-to-be-worth-it-anyway-attitude. A "why bother attitude" for everything and everyone. I don't like being in a funk like that.  Honest.  But at least I can recognize it and try to get myself out of it.

Today I am in one of those funks.  My husband and I woke up quite a few times last night thanks to the wind knocking our power out....and then having it come back on....and then off....and then back on again.  And this morning happened to be the morning that my daughter decided to wake up waaaay too early and serenade me in her bedroom. And it's blah outside. And for once, I don't think any of this can be contributed to Sjogren's Syndrome.  Yay, Sjogren's!

For now my plan is to ignore you guys for the rest of the day, throw open the curtains to get as much "sun" as I can, light a super yummy candle, and snuggle with my girlie while watching movies. Maybe we'll throw some Operation playing into the mix as well. 

Tomorrow I have an appointment for a massage at The Spa at Hotel Hershey. MMMMmmmmm chocolate massage here I come.  My hubster gave me a gift card for Christmas.  This is normally something that would have me wriggling in excitement like a little puppy.  Not so much today.  I know, how could I not be excited?  It's "The Funk".  Yeah, there I go again with my "why bother attitude". Trust me, once I get there I will be thrilled tomorrow!!!! 

Maybe I need to throw in a watching of The Sound of Music, as well, just for good measure!  And sorry for my rambling Eeyore attitude today.  It'll be better tomorrow I promise!

Hope your day's sunny!!!

Sunday, January 1, 2012

New Years


So the ankle is slowly healing. I can walk on it and put pressure on it but my sneaker is still uncomfortably tight.  Which pretty much means it's still swollen.  Despite this my husband and I had a fantastic New Years Eve. (L did too as she spent it getting spoiled by my parents.)

And we spent most of the day with all my aunts, uncles, cousins, their kids, my parents, and grandma.  My dad made the coolest pinata for the kids.  It was an apple.  As in, "THE big apple". They thought it was amazing. So much fun! After it was wrecked "the big kids" had fun completely demolishing it once all the candy was out.

We had a great weekend. I am so tired now.  I'm pretty sure baby girl and I will be spending her last day of winter vacation snuggling on the couch.  Movie day!!!