Thursday, May 30, 2013

Mommy Guilt

On a normal day, with every ordinary mommy out there, a certain amount of guilt is always hovering in the back recesses of their mind.

Should I have sent that coat along to school for Jim?

Did I go overboard with Lori's birthday party?

Am I being too protective? Or not protective enough?

The "mommy guilt" can be overwhelming if you let it get too big. That doesn't even take into consideration all the outside influences constantly being thrown our way. A consistant barrage of social headlines and tweets from all our mommy friends and family, the countless blogs, vlogs, and articles floating around the internet on a daily basis. It's just a veritable smorgasbord for self doubt, mommy guilt central.

I don't have "normal days" every day and I am not an "ordinary mommy". No matter how I fight against it, that's just not the case. This post isn't designed to make it appear as if my mommy guilt is worse than everyone else's. I don't want people to think I am just sitting around saying, "Oh poor me, I have things much worse because I am chronically ill.", because I'm not. I have no interest in a one-up competition over who has more mommy guilt than someone else. Things are just what they are. Which means, like it or not, that added to my normal mommy guilt is also my Sjogren's mommy guilt.

Usually I can just shove that extra guilt into a cob-webby corner of my brain and get on with life without giving it another thought. Lately, though, I have had it popping up without invitation, mostly due to our experiences with our daughter. I have not written about this previously because I wasn't ready to. But I feel like I can admit that my daughter has generalized anxiety. Yes, she has a doctor, we have game plans, and things are mostly under control with it. (I say mostly because I feel like working through anxiety issues is a constantly evolving thing that can bring up new anxieties as other ones are resolved.) Quite a lot of L's anxiety revolves around doctors. Medical procedures, ER visits, mentioning that she looks paler than normal, simple strep swabs, and run-of-the-mill ear checks during yearly physicals are some of the things that have caused the anxiety to come on. The point of sharing this is to further explain my "extra mommy guilt" that I have thanks to Sjogren's.

Lately, I have been wondering if my girly's anxiety would actually be what it is had my husband and I decided to not clue our daughter in to my illness. Did I cause my daughter to have this anxiety? Honestly, I know that it wouldn't have worked to keep her in the dark because she is so so so intuitive that she would have picked up on the fact that I can't do things that other mommies can do. (Like splash in the water and sun all day, sled in the snow for hours, or sit on a floor and play for long periods of time.) But that doesn't stop me from feeling guilty just the same. My brain gets stuck in a hamster wheel of thoughts and they go tumbling over and over each other. Does it help to wonder these things? Probably not since the choice to share or not share has come and gone long ago, but that seems to be a small comfort to me right now.

As I am writing this I am feeling completely vulnerable about this issue. I feel as if one word of validity to my feelings would see me crushed and second guessing every instinct as a mom. Which sounds terribly dramatic to me after just having read that. Ha! Truthfully, I don't know if I'll ever have the bravery to actually post this or not, but it helps me immensely to get my thoughts out.

Perhaps, in my thinking I need to keep in mind that God gave my daughter to me as a gift. He alone chose me to be her mom. Me. (That causes little tiny shivers to dance down my back when I think about it long enough.) So God knew what he was doing in blessing us with her.  And blessing her with us. A that thought that is a huge comfort to me. And that... has the power to kick my mommy guilt in the butt!



Tuesday, May 28, 2013

Push

Recently, I have read sooo many social media headlines that say something like, "At the gym, pushed myself further than I thought I could..."

As I sat there viewing pictures of friends at the gym or family taking part in some run or another I realized that I could post the same headline.

"My girly wanted to go on one more ride at Hershey Park. So I pushed myself a little harder."


"I wanted to finish cutting up the veggies that I got from my CSA so I pushed myself a little bit farther so I could put it all away before I started dinner."


"It was sooo hot out but we wanted to spend five more minutes in the pool so I pushed myself  to stay outside just a little bit longer."

Mmmm... Not so much the same thing, but it's what I have to be happy with. :o)




Monday, May 27, 2013

Google Alerts

Google Alerts shared this link with me last night and I thought I would share it with you. The thing I find funny is that this is on a website called Medical Marijuana. However, this has a page about Sjogren's Syndrome and it's written very well with a lot of information.

I am not saying if I am for or against medical marijuana use but I would most definitely direct someone newly diagnosed to this website simply because there is such a wealth of information about Sjogren's all on one page.




Friday, May 24, 2013

Stubborn

Hello, my name is Kristen, and I am a stubborn lady. Stubborn to a fault at times. Stubborn, stubborn, stubborn. Like, sit in the rain and get wet because I said I was going to eat a picnic lunch outside, kind of stubborn. (And I passed this trait onto my girly, but that's a story for a whole other blog post.)

Quite a lot my stubborness gets me through my rough days with Sjogren's Syndrome. I get determined to not let it ruin the plans I have made and then I grit my teeth and do whatever it was that I was planning on doing. It drives my husband nuts!

I have hit a flare the last few days. I think due to the fact that the weather went from the damp sixties, to the humid nineties, and now it's suppose to be in the fifties today. My body is going "What the...What?!".

This is not something I can stubborn my way through. I just have to sit back and ride through it. I'd like to pout about it. Instead I will try to think about how this is teaching me, even further, that I can't control everything and just force my way through things. Sometimes I need to just sit back and find pleasure in the little things while I can't enjoy the big ones.



Thursday, May 23, 2013

Bad Humor

My husband and I were laying in bed the other evening discussing this nice little informative allergy chart for the Northeast. (No, I have no idea why we were doing this in bed and not an hour before while sitting on our couch.) I found it hanging on the wall in my allergist's office and decided I needed to take a picture with my phone to be able to whip it out whenever I should have a need to know what allergies are in season. Ok, so you can laugh at that statement! But when your allergies can get as bad as mine can, it pays to know what's coming next!


The conversation  my husband and I had went something like this...

"Yay, honey! There are no allergies in the month of July!!"

"Yeah, but by then you're dealing with the heat and the sun which causes you to feel sun sick if you are out too long. Which means you'll really only have a short period of time in the entire summer that you will be completely comfortable with all of your health issues."

"Huh? When is that?"

"June 25th."






Wednesday, May 22, 2013

Beat the Heat

My phone said it felt like it was 88 out yesterday afternoon. So, I found a way around it with a fresh strawberry slushy from our local Farmers Market. Yum! Kristen, one. Heat, zero.



Tuesday, May 21, 2013

I Don't Mean to Complain but...

I'm going to for a quick sec anyway!

Here in PA we've have below normal temps for awhile. This past weekend was rainy and chilly. Then suddenly mother nature decides to send eighty degree weather with the three H's. Hazy hot and humid are so not my thing. Especially. ESPECIALLY! When it comes on the heals of a cold drizzly sixty degree day.

My body is freaking out here!

The next two days are supposed to be 88 with the three H's again. Bleh! Bring on the body aches, nausea, and heat headaches!! 



Monday, May 20, 2013

First Trip of the Season

We went camping this weekend. Friday after L was done with school until Sunday morning. It was a new place and we were pleasantly surprised with it. We will definitely go back there again.

We visited the fishing pond, the rec room, had pancakes on their veranda while L played on the great playground, played on a huge chess board, "panned" for gems and fossils (our favorite part), explored a "secret" trail, and had lots of camping fun back at our campsite as well. Unfortunately, we didn't get to take advantage of the pool or the mini golf course. Next time for sure!

 Fishing Time.
 Panning for gems and fossils.
 L's mother load.



Friday, May 17, 2013

Pet Peeve

 It's not the greatest picture, however, it's good enough that it can accurately show you how many pills I take in the morning. Just the morning. I have plenty of other medicines I take at other times of the day. (And I am fortunate because I know people who take twice as much as this in one sitting.) I've gotten used to taking the meds, it's just a fact of my life. I grab a glass of water, swallow the pills in one gulp, and move on with my day.

 The hard part for me is remem-bering when to take what medicines and spacing them out so I'm not taking them all in one sitting. So I've had to start labeling the lids of my bottles so I remember when I take them and how many times a day. I have gotten to the point now that I can look into a section of pills and know by instinct that those are the right pills to take, for say Thursday morning, which makes things easier.

With so many medicines to take it becomes a MAJOR pet peeve to me when the pharmacy decides to switch up my medicine brand.  So, instead of giving me Plaquenil from one pharmaceutical company they give me Plaquenil from a different company. Which could end up making the pills look completely different. I had that happen the other day. The Singulair pills in the picture are the same medicine, just two completely different colors and sizes. This will throw me off for weeks now until I get used to the new ones. With next week being the worst because I will have half of my Singulair being the old stuff and half being the new stuff all in the same week. Grr.

Sounds trivial I know! I guess this just gets filed under the incredibly simple things that make life easier for a chronically ill person that would usually be taken for granted by a "healthy" person?





Thursday, May 16, 2013

A Convo with L



We saw this commercial on TV yesterday and this is the convo that followed...

Me: That exact commercial played when I was your age, my girl.
L: Oh yeah, I could tell because it was black and white.
Me: (In mock outrage) Black and White?! It had color!
L: Yeah, only a couple, 'cause you're so old!

Makes a gal feel great!



Sunday, May 12, 2013

Motherhood


Motherhood is the toughest job. Ladies tell you that while they sit around watching you rub your eight month pregnant belly. And in the bliss of that moment you just smile and nod because all you can think about is a sweet smelling little baby to snuggle in a pile of blankets in your arms. You don't think about...

The middle of the night feedings that turn into your baby thinking it's social hour.

The massive blow out diapers that have you wiping poop out of wrinkles you didn't even know your baby had. That makes onesies so gosh-awful dirty that you just throw them out rather than try to wash them.

Soccer games that find you sitting outside while the sky furiously spits wet rain and snow at you. Which turns out to be okay because you really can't feel your body anymore anyway, despite the layers of clothing and outwear you have on.

Hours and hours and hours of worry. Worry about your child's health, if you're actually doing a good job (could you be possibly messing up your kid), will they make friends at school, or did you make the right choice for the family.

The stress about getting their birthday party perfect. There's cupcakes, and party favors, clean the house, buy gifts, wait Becky didn't rsvp yet, should we do a cake instead, we need napkins that match the theme, pink or yellow balloons, and now it turns out your kiddos best friend can't come to the party after all. Ahh!

Late night creativity. Whether it be the batch of cookies that your child promised you would bake for the class, or the outfit she was supposed to wear for "career day" at school that she didn't mention to you until six o'clock the night before.


Well you get the point! Mothers. We're nurses, shauffers, dieticians, coaches, art directors, teachers, bakers, and cheerleaders.


For all the things that make motherhood so hard they are all paid back in...

Hugs that melt your heart.

Smoochy, sloppery, ice cream kisses while you sit on the front porch watching the ice cream man drive away.

That pure unadulterated look of love that you get in the midst of the fantastic fun you are having together.

The "Thanks Mama, you are the best!" as they run out the door to play.

The sweet little boasty comments you overhear your kiddo saying to her friends at her birthday party about how much they think you can do.

Looks of joy when you actually pull off the late-minute creativity.

Thousands of hours of plays, games, artwork shows, musical performances. Pride. You get to have when you look at the stunning little piece of your heart that is walking outside your body and turning into such an amazing little person.


The first list makes my life with chronic illness so much harder. But the second list is what makes everything. EVERYTHING. Worth it. :o)







Saturday, May 11, 2013

Perspective

Back when I was pregnant with my girly I ended up with Bell's Palsy. The whole left side of my face was paralyzed because of it. Parts of my face never really recovered from it. My left eyelid is still a little droopy and even more so when I am tired. My smile is crooked now and I can do the neat one-eyebrow trick since the left eyebrow doesn't move.

My self esteem never fully recovered either if I want to be completely brutally vulnerable honest about it.

The other day, I had to blow the whistle in the cafeteria at work. And when I say 'blow the whistle" I, literally, mean I blew a whistle to get the kids attention. Later I had a boy ask me why "my face gets all squinty and my eye looks all weird.". Hmmmm, I can't say that I have ever blown a whistle in front of the mirror so I couldn't tell him how I looked. However, I did explain my paralysis to him. And I was surprised to find that he was completely excepting of it. His response was to tell me that it would have been cooler if I my face had been paralyzed in a car accident. Which was pretty tame of him, knowing the personality I was dealing with. I responded with, "It would have been cooler to not be paralyzed at all but I deal with it."

Anyway, long story short, my point is that it could be pretty easy to be down on myself about the way my face is. But I choose to look at it like this.....


This is how I remember looking.
This is how the kids see me look blowing a whistle. (And, yeah okay, my eye gets super squinty.)

This is how I think I look when people see me smile.

And this is how I really look.

Just me. :o) A 32 year old friend, daughter, and wife. And the mom to the most amazing girly. Who likes to put flowers in my hair.



Friday, May 10, 2013

"Mess Free" Glitter Art; Busy Baby Resting Mommy


This idea comes from my girly's own imagination...

In her words, "If you want to play with glitter to make art, just put some in a paper cup and mix it with glue. Give your kid a paint brush and let them paint with it. That way they can use glitter in their art but it's not crumbly and falling all over the floors for Mommies to have to clean up after them. And then you can just throw the cup away."

Genius idea! And she will be thrilled to know that I liked her idea enough to share it with all of you!



Wednesday, May 8, 2013

Video Share



I saw this video, on Facebook yesterday, and couldn't wait to share it with you.  It's entitled

"IF WE COULD SEE INSIDE OTHER PEOPLE'S HEARTS": LIFE, in 4 min


It's very touching. I'm at a loss for words because I am so affected by it at the moment.



Tuesday, May 7, 2013

An Unexpected Twist

L and I decided to play a game of Rummy Que today. Barre decided she wanted to throw a twist into our game. Playing around my doggy girl #2 is definitely a handicap.



Saturday, May 4, 2013

A Letter

I came across this blog post written over at Sjodry and Parched. It's an "Open letter to those without Sjogren's Syndrome". She gave permission in the blog post to share so that is what I am doing because it's so true. Everything she wrote in that letter needs to be heard. And so, I'm sharing....

"An Open Letter To Those Without Sjogren’s Syndrome
I recently came across a site: http://notdoneliving.net/blog/openletter-id which posted an Open Letter to those without Chronic Illness. I noticed that there are several adaptations to the letter that people have made with respect to their various specific medical conditions. Of course I decided that I should immediately create an Open Letter To Those Without Sjogren’s Syndrome. So for any of my Sjoggie friends who may feel the need to share this message with someone, please feel free:

An Open Letter To Those Without Sjogren’s Syndrome..
What I would like you to know is that I have a mostly invisible, chronic illness called Sjogren’s Syndrome. Life as I know it, is unpredictable and changes daily for me. Just because you cannot see those changes or their impact on my daily functioning, does not mean that they are not real.
Most people have never heard of Sjogren’s Syndrome. And for the small number who have, they mistakenly believe that it is only a simple and benign case of dry eyes and dry mouth. In the spirit of informing those who wish to understand…

Please understand that I have limitations. My energy, emotional and pain levels are constantly fluctuating. What you may see when you look at me may look like laziness, indifference or depression. If you visit, I may seem uninterested or distracted while in conversation. I may not have the ability to spend time with you in the same way that we used to. I may have to decline your invitation(s); cancel at the last moment or shorten the length of time I spend at an event.

Please understand the difference between “happy” and “healthy”. When you have the flu, you are temporarily miserable, but I have been sick every day for years. I can’t, nor do I want to be miserable all of the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means that I’m happy. That’s all. I may be tired, in pain or sicker than ever. Please don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you are welcome to and I will be happy that you noticed.

Please understand the constant emotional toll that chronic illness has on me. I worry about everything. I worry about whether I can continue working or what happens if I can’t. I worry that my progressive medical issues could force me to apply for disability, something that I never want to have to do. I worry about the mounting medical bills. I worry about the battles with my insurance company for medicines or procedures that I need but that may not be covered or have already been denied. I worry about my relationships and the impact that my illness has had or continues to have on them. I worry about how I am perceived by others and whether there’s a chance that I am crazy. I worry about being a good wife, mother, daughter, friend, co-worker and any of the other roles that I have.

Please understand that your well-intended comments like, “But you don’t look sick” are difficult for me to hear. I recognize that your intent was probably to reference the fact that my physical appearance might not indicate that I am ill. The message I receive however, feels like that unless that I “look” sick, that I am not believed. Nor do you have any comprehension of how very hard daily life with a chronic illness is. In essence, it feels as if you have just told me that because I don’t look sick, that I must not be ‘that’ sick.

Please understand that I appreciate your well-meaning advice when you tell me that getting out and doing things will make me feel better. But there is a strong likelihood that it will not, or may cause a flare that will take days or weeks for me to come out of. Please know that if my long-term medicine(s) cannot alleviate my incredible amount of fatigue, that acting on your suggestion of taking a walk or bike ride will not either. But please know that I would like nothing more than to feel up to joining you for those kinds of exercises or outings.

Please understand that if I say I need to sit/lie down; take my pills now that I really need to do it now – it can’t be put off or forgotten just because I am doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

Please understand if you are tempted to suggest a cure to me, please don’t. It is not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It is because there is a strong tendency for many well-meaning family, friends and co-workers to all do this. Supplements; diets or unproven treatments could prove to be very detrimental to me and my autoimmune condition, other medical condition(s) I may have or the medications that I am currently taking. I routinely deal with many Specialists and communicate regularly with other Sjogren’s Syndrome Patients – if there were strong, proven and widely accepted new treatments (beyond the medicines that I am currently taking), we would all know about it.

Please understand that getting better from a chronic illness can be very slow. And getting better from an invisible and disabling autoimmune illness might not happen at all. People with Sjogren’s often have a lot of systemic involvement of various organs. Our systems are very often in a state of progressive decline. It may take us a long time to sort out all of our medical diagnosis(es) and a medical treatment regimen that works…if we do at all.

Please understand that you are important to me. I want nothing more than to be that healthy, spirited person that I once was and that you remember. But I am no longer that same person. My new normal changes from day to day depending upon what my symptoms dictate.

Please understand that I may sometimes need your physical assistance and/or your emotional support. But most importantly, I always need your understanding."




Thursday, May 2, 2013

Rant






I saw this posted on Facebook this morning. While I agree that some health concerns can be "fixed" with diet, exercise, and supplements I find this appallingly arrogant of this person to think that it fixes everything.

Does this person really think me lazy because I am on so many medications? Do they not realize if simple exercise, healthy food, and chiropractic care was all I needed to fix my health problems then I would be well on my way to being cured? I already have two out of the three down, so that means all I need to do is get myself some chiropractic care and I will be good to go! Right?

OK, I'm done with my rant. Now, back to your regularly schedule programming. :o)