January 25, 2012

Dr Appt Update (Auto Immune Disease Related)

Hey Peeps,
If you are my "in real life" friend let's keep the following between you and I for now, -k-
Much Love, Jen


Wow just writing that title is a bit draining.  I keep hoping and praying this whole thing will come to a close and be done or that I'll get some definitive answers about what my future looks like but alas I have not and it looks like I won't be any time soon, as is the nature of my...disease. (I'm coming to the realization that I have to start calling it that, I have a disease...)

Yesterday  Monday I had a check up with Dr. T (Hematologist Extraordinaire).  It had been two months since I'd seen him.  Two glorious months with out those damn darn steroids pulsing through me.  Two months of pretending life was hunky dory.  I really didn't think about my ITP much until a few days before my appointment, I started to get really anxious....unfortunately when this happens I tend to close off, I don't confide in people, I internalize.  It's just how I deal, more on that later.

Monday morning finally rolled around, I got up a little extra early to have some quiet with my thoughts and coffee.  I took my time showering, dressing and doing my hair/makeup.  That always makes me feel a little better, heaven knows why, but it does.  Then the morning went about it's usual routine: Liam happily rises requesting a clean diapie, a morning bottle, snuggles etc.  Before I knew it I was dropping him off with Nanna and heading back into town.  I treated myself to a Carmel latte with whip cream and headed to the hospital.  I had around an hour before my appointment so I carried along a magazine, my ipod touch and my cell phone (dead battery and all, of all the days I could have used the distraction of a text my charger was at work, oy). 

My blood draw was the least painful I've had yet, thank God for that!  I also think it helps that my poor arm has had time to rest and heal.  I was in and out of the lab in record time so I just headed over to the oncology office.  Upon signing in, with the receptionist who still remembers me by name (how awesome is she?) I was informed that my shiny new insurance is wonky crap....great, as if I wasn't anxious enough.  Then I over hear (because I was standing literally in front of the woman) that they have over booked my dr during my time, I should have said "I'm really sorry but I need to be on time so I can get to work." but didn't.  Thus I would end up waiting an hour to see my doctor.  Fun times.

After, what seemed like forever, I finally got to see Dr. T.  My numbers are again lower....looks like my ITP is likely chronic.  I had suspected and feared this for some time and now here it was staring me in the face. I swallowed hard and glanced to the side, as I always do when I don't want to discuss something.  I don't have to go back on the steroids yet but Dr T is predicting my ITP is here to stay.  Also I've lost five more pounds, I'm twelve pounds below my pre-pregnancy weight.  Dr. T wasn't concerned but clearly thought enough to bring it up in conversation.  *side note I'm not trying to loose weight, I need to start toning but cardio=therapy for me*  He also told me that my hemoglobin (red blood cells) are looking much healthier (after four months of taking 300% of the daily requirement of iron each day, yuck) but I'm to stay on the iron for at least 8 more months.  I can handle that.  Up on to the exam table for the physical.  Dr. T makes small talk, he's such a nice guy, it makes it so much easier to face these appointments.  We discuss the mass of snow we got and how both of us got stuck, luckily he has teenagers that could dig him out!  He tells me that even if my ITP is chronic that it's not unreasonable to want or try to have more children, this is reassuring to me.  In passing I mention I've been having shooting pains in my right breast, I figured it was just my hormones and he'd pass it off as I had....nope....he's concerned.  Eff.  I'm handed a "gown" for lack of a better word and asked to undress from the waist up, full breast exam to come.  Eff.  I hate these more than anything on the planet but if he's concerned I guess it's necessary.  He comes back in and checks my poor floppy breasts and arm pits for lumps and bumps.  Nothing. (I also had found nothing in my own self exams).  This is something more to keep an eye on.  He wants to see me back in 3 months.  Should I find any lumps/bumps have specific bruising or become concerned I'm to call and have blood work done.

I'm saddened that the time between my visits isn't extending more, from this I gather that he doesn't think my platelet numbers will stabilize but will continue to decrease, that in three months it will be important for me to be monitored.  My road with ITP will not be short, likely not easy.  I'm afraid, fearful of the next treatment options (they are $10,000/each), fearful of needing surgery.  I'm concerned about what my future looks like, if Liam will ever know a healthy mom.  Sure I can function right now, but will I always be able to? And to what capacity?

Adding to my worries and fears is the mess that has revealed it's self with my insurance.  Dr. T is listed as in network on my insurance's website BUT when he's office goes to bill them the insurance will only pay him as out of network.  After some investigation I've learned it's a mess with his tax id numbers (he can work out of either hospital in my town but works out of only one, while both hospitals are in network only the office at the other hospital is considered in network on my insurance).  The short end of it is that I may very well have to switch doctors.  No one would want to do this, you build a relationship with these doctors, when you find someone you trust and that is doing a great job...you don't want to just up and leave.  It's not looking good, I've fought hard, I've done all I can do...I've spoke to Dr. T's office and my insurance twice yesterday alone. I've made pleas and calls to my Human Resource person (a lot of good that's done me, sarcasm intended).  It's in God's hands but right now I'm so very worried.

Not only the stress the insurance mess but the overall stress of having this...disease...is getting to me.  I'm starting to worry about missing out on things I love, like hiking.  I was thinking the Saturday night about how excited I am to hike again, since I couldn't last summer....then I started to worry...what if my platelet numbers are really low again and I don't know it, and I fall and get hurt in the woods.....what if....  It wasn't pretty.  Please don't tell me not to go there, it's where my brain goes, and to some extent I do have to think about these things, I have to be realistic about what my future looks like.  I'm starting to see the weight of this on me, I need an outside person, a therapist to talk through all of this with.  I need someone who doesn't know me personally and it's emotionally attached, I need someone who won't just say "it's all going to be ok, don't worry."  Because I need more than hearing "don't worry"...I need someone to understand that I'm scared and help me walk through this.....I looked up the number for the free counseling my work offers.  I need to verify how much I can get at no cost because I'm sure it's not a lot and I will need more than the allotted amount.  Just one more thing I have to figure out how to navigate.

So, it may not be pretty but that is where I'm at right now.  V's been pretty great and thank God.  He's allowed me to get away to the gym more than usual, the other night he took care of Liam so I could get dinner with one of my incredible friends and tonight he's treating me to highlights.  He's been fairly understanding, as understanding as a guy can get....ya know they usually want to fix stuff, this can't be fixed....I just need to be heard and cry an ugly cry and he's allowed me that too.  V and I are far from perfect but he's pretty darn good to me, I need to be more thankful for what I've got because I have more than a lot of people.....

January 23, 2012

Bountiful Basket {dot org}

If you have read this blog for more than a moment you know I'm passionate about health and fitness (*points to Fitness Blog link to left*).  Today a co-worker shared this website with me:

Bountiful Basket (dot org)

First this is nation-wide, cool!!  $50 worth of fruits and veggies for $15! Sign me up!  I get my first basket this Saturday and I could not be more excited!  I think this will be the jolt I needed to make Liam some new and different foods and get V to try some different things!  I promise to take pics of MY bountiful basket this weekend!

(I am not being paid in anyway shape or form for this post, I just wanted to share it with YOU!)

Much Love,
Jen

January 20, 2012

Bed-Sharing

There was a few nights there where V and I did bed-share with Liam, especially in those very early months.  It was out of desperation for sleep, thankfully those nights are long (LONG) in the past us.  We are blessed by a 7 month old baby who not only sleeps in his own crib but also sleeps through the night.  I'm not bragging, Liam did it all himself...one night he just decided to sleep for ~10 hours, after a few nights he was sleeping 11.5-12 hours most nights (if he does wake he falls right back asleep with his bink).  For us having a predictable evening routine works (5pm dinner, 5:30-6 play, 6:45 bath, only two nights/week or as needed, 7pm jammies, bottle, story, bed.)

The point is, I saw this online today and it's so damn funny, because it's true.  I almost peed myself laughing. 

Happy Friday Peeps.



Much Love,
Jen

January 19, 2012

Knee Deep in Snow (or Deeper)

Oh my gosh!  In my neck of the woods, also known as Montana, we've been having a very mild winter...not gonna lie I was diggin' it...until yesterday.  It started snowing somewhere around 48 hours ago, and while it's much lighter than it was, it has yet to stop....we've got over two feet in the valley, yikes!  The plows have been working through the day and night but it's difficult to keep up....Yesterday I got stuck going to pick up Liam at Nanna's and it took an hour round trip (normally >15 minutes).  This morning I pulled out of our garage and made it a grand total of....nine feet...before getting stuck in the middle of my street.  I had to go over and ask our neighbor to help me....oh yeah I'd never met him before (he works weird hours, it was only by the grace of God he was home)...oh yeah I was really spent emotionally, for other reasons, and burst into tears....awesome.  He was so kind and helped me get the car back into the garage, V had taken Liam in the truck out to MIL's house, I called my boss (cried to her too) then called V and cried some more.  I swear I'm not emotionally unstable just a bit stressed out and this whole thing sorta tiped me over the edge.  V had to come back into town and take me to work.

The day raced by at work, even through I forgot lunch, thankfully I had plenty of coffee....ek!  My boss spent three hours of her day digging her two teenagers out of the snow, late in the afternoon she came in and gave me my annual review.  Last year's review was horrible, I had only been there ~4 months, was 3 months pregnant and hadn't learned my job well yet....it was the worst review I'd ever had.  Personally I don't think you should give someone an annual review after so little time but I guess my opinon doesn't matter much.  This year's review went much smoother, and thank God!  I'm hoping I'll get another good raise because of it.  Thankfully my FIL had left MIL with his big 'ol truck, she and Liam came to get me, we made a quick trip to the grocery store since the weather was supposed to continue in the holding pattern.  Oh joy, I had forgotten my wallet somewhere, where I had no idea...my sweet MIL just covered my groceries for me...thank God for her (again!).  It really does take a village.

Now we've all been home safe and sound for several hours and I'm feeling much less stressed, mostly because the plows finally made it around to our area so there is hope for tomorrow!  I found my wallet, Liam is fast asleep and all is well with the world again.  If you made it this far you deserve a cookie!  I just really needed to get all that business out.  Soon enough I'll be off to bed and honestly I can't wait!

January 15, 2012

Happy 7 Months Liam!

Life will never be the same and Thank God for that!



January 13, 2012

11...make that 12!

My boss at my old job used to call me the "Fertility Fairy" because I had so many pregnant friends.  At one point I think I had around 20 (in one calendar year)...all the while V. and I were having trouble trying to get pregnant...It wasn't the most fun time in my life but eventually my turn came around and it's been an amazing ride! 

This morning I was writing all my friends' due dates in my day planner, because I'm a nerd like that, and I realized Gosh, there are tons of these!  Um yeah, I have 11....ELEVEN pregnant friends!  I'm so happy for each of them, several of them struggled to get (and stay) pregnant.  2012 will bring 11 babies into this world, God willing, by the end of summer....I can't wait to see all these people start this journey!

Happy Friday!


***After I posted this I learned a blog-world friend, Rachel, is finally expecting her first!  Run over to Dramtic Elegance to congradulate her!  While your at it hit up Charity at Way Out West AND Casey at This Modern Love!  I'm so excited for each of my TWELVE pregnant friends! :)

January 11, 2012

Search Words

I'm that nerdy blogger who wonders who is reading me (if anyone) and how they found me.  I randomly check my stats and rarely find anything out of the ordinary until this afternoon.  Today when I reviewed the search words that lead to my blog I was humbled.  Two of the most common words searched that lead to my blog are:

Miracles
I've seen Miracles Just Happen

I don't know what kind of miracles these people are looking for or if they are simply looking for a glimmer of hope.  I recall many-a-time when I was so desperate for some hope in our trying-to-conceive journey, I read so many blogs, several I still follow.  Is this the miracle these people are seeking, I don't know but whatever kind of hope they are looking for I pray from the depths of my soul that they find even the smallest amount here.  Liam is a miracle baby, my journey through the whole autoimmune disease thing feels like a miracle to me.

I believe in miracles, I believe they happen everyday and all around us if we are willing to see them.

More Confidence, Less Give-a-Damn

Good Morning Peeps!

This morning I was dressing for work, I threw on a plum colored/v-neck dress [that I've had forever] with long black leggings and pulled my hair back into a pony with my bangs twisted to the side.  Sounds pretty ordinary right?  But for me it's not.  During my pregnancy I lived in dresses and leggings because I was always so warm and didn't love the way maternity pants rubbed on my belly, dresses and leggings provided me the comfort every pregnant woman needs.  Pre-pregnancy I didn't think I looked "right" in most dresses or leggings let alone combining the two.

Now I'm about 7lbs below my pre-pregnancy weight, and managing to get about two workouts in a week and I feel better about my body than I have in....a very long time.  Pre-pregnancy I was a bit self-conscious about wearing certain outfits, for no good reason, even though I was a healthy weight I just didn't feel rigth in some outfits.  Now something in my mind has clicked and I just don't care as much, I have much less give-a-damn ...all that matters is that I'm comfortable and I feel cute. 

My body is much different than it used to be, the boobs will never be the same and I still have some remaining loose tummy skin.  I don't love my naked body but I'm proud of it, it brought me the most amazing little boy on the face of the earth.  Now that same body, fab and all, carries him around, plays with him, rocks him to sleep and comforts him...this body is great incredible and I will be am much kinder and accepting of her.  This is a good [emotional] place, I like it here and I like my cute outfit!

I've got a lot to be proud of and much more importantly I want to teach Liam what a confident woman is like.



Much Love,
Jen

January 9, 2012

Playing Stay-at-Home Momma

This morning I arrived at Nanna's and...yikes!  Nanna (who is only ~50ish) had fallen yesterday and looks to have broken a couple toes...she can barely walk.  She had texted me twice last night but I hadn't turned on my phone yet.  Oh no!  I felt so awful, I stood there dumb-founded as I tried to mentally re-arrange my day.  She was so sweet telling me she could still do a half day when she clearly could not.  I ran outside to get my phone out of the car, turn it on, and call my boss.  My boss is crazy unpredictable on a good day so I was pretty worried how this would go but since I had paid-time-off stored up I knew she couldn't freak out too bad.  Gulp.  Thankfully she was relatively sane this morning but she made sure to point out they (Urgent Care) can't do anything for broken toes, well duh but it's not my place to tell Nanna she can't go or that she can't have a day off you a$$.

I scurried back inside super excited for another day with Liam and actually really thankful we had come all the way out to Nanna's, it got our day off and running so we didn't just stay in jammies all day!  I left some supplies with Nanna for next week (Auntie K is going to watch Liam the rest of the week) and bundled Liam back up to head out into the cold.  By 9:00am we've already run several errands, including buying some swimming diapers!  I've wanted to take him swimming forever, now we have the only missing piece so we'll go later today!

Liam is already down for his morning nap, later we've arranged for lunch with a friend then we'll go swimming!  I'm super excited for all this extra time, it's so rare and more valuable than I can express!  God often hands us these special blessings when we least expect them, I'm going to cherish today....but first I think I'll nap! :)

Much Love
-Jen