Bloodwork Results {Good News}

On Monday I took a much needed (and deserved) day off to spend with Liam.  I intentionally didn't make plans with friends, I just wanted some Liam time and it was wonderful!  He slept in so I got an extra hour and half of sleep which was amazing (fellow Mommas, can I get an amen?).  Before he rose I popped out of bed and made us some scrambled eggs and cut up fresh fruit.  V got Liam up just before he had to head to work.

Liam and I spent the morning just playing and reading, it was glorious!  However, after a weekend spent mostly at home I could tell he wanted to get out of the house. How did I know this you ask, because he wouldn't stop bringing me his coat and shoes!  Little stinker!  I got the hint, I popped him in his crib with a few toys while I took a very short shower and threw my wet hair in a ponytail.  I dressed both of us and off we went!  Our mall has a play area for smaller kids (under 5-6) which on the weekends is so over run with older (and unruly) children Liam never wants to go near it.  I knew on a quiet Monday morning it would be heaven, with coffee in hand it was confirmed!  I should have brought the camera (because I'm too cheap to pay for data I don't own a "smart" phone), the pictures would have been awesome but enjoying the time was amazing!  Liam ran around with another little boy his age, up the stairs and down the little slide a million times!  We stayed there until Liam was super tired then it was home for lunch and nap!


V's mom gets off really early on Mondays, she came over after work so I could run off for a bloodwork appointment.  I was not excited, I thought up every excuse in the book to not good and secretly hoped MIL would cancel.  She did not.  I arrived at the lab and after checking in was greeted by a familiar nurse.  Who am I kidding they are all familiar at this point! LOL!  The whole process was simple and quick but I was nervous enough that I was sweating like mad...gross and annoying but thankfully I don't think it was obvious. I asked her if my dr would have the results today, she replied Oh yeah but you know doctor's you won't hear from them until tomorrow or Weds.  I smiled and said Okay but she recalled my story from previous visits and offered to call me with my platelet number later.  Let me just say right here I know that technically she should not have done this and it's not in her job to deliver what could have been very bad results BUT she offered so I gladly accepted. 

Three hours later I was home just cleaning up after dinner assuming the nurse had either forgotten or my results weren't good and she decided against it when my phone rang.  Hi, Jen? This is Nurse X.  Your numbers are low but really good for you, your at 126k!  Congrats!  I thanked her about 11 times before letting her go, with teary eyes I told V. Hugs all around!

A little recap: (Normal: 150k+)
Diagnosis: Sept 2011: 10k
Sept/Oct 2011: Treated with Predniose, I responded well but after coming off my #s steadily went down
April 2012: 90k (per my hematologist < 80k=dangerous/treatment needed)
Remission: Aug 2012: 300k
No Remission for Me: Nov 2012: 115k
This month: Feb 2013: 126k


So it appears that I do indeed have a chronic case of ITP which I will have to monitor for the rest of my life, the good news is that my body is currently holding it's on.  I'm in a place where my internal medicine dr is fine monitoring me and I can proceed with confidence in my Half Marathon training!  God is so good and faithful when we give things up to him, he has provided for me and I couldn't be more thankful.!

Lazy-ish Weekend

With all the stress I've been dealing with over the last ~2 weeks I was a bit over whelmed when it came to this weekend, we had a lot planned and I started to get anxious, I just didn't see how we could really get it all done....so I started canceling whatever I could.  More than anything I needed down time with my family (and maybe a workout).  May I just say, Mission Accomplished.

A brief overview of our weekend:

Friday Night: Dinner with V's parents & a Movie on the sofa after Liam was in bed (Men in Black II, very good btw)

Saturday:
Shortly after we all got up and had eaten breakfast V insisted I head to the gym for my favorite BodyCombat Class and I listened, it was wonderful and I needed it
Liam and I did Parent-Tot swim lessons, so much fun!
Lunch & Family nap time
Liam and I ran a couple errands (I found an adorble shirt at The Gap 50% off!)
Liam and I grabbed smoothies (his first) before heading home for dinner with V and play time
After Liam was in bed V and I did our own thing, I finished The Last Lecute (I highly recommend it!) and went to be early...V played video games


Sunday:
Liam slept until almost 9:30am, two hours later than normal which means we all got to sleep in....it was glorious (we also missed church again, oh well).
After a lovely lazy morning we all got ready and ran over to have Liam's picture taken with Santa (I had cancelled our appt with the photographer we usually use and decided to just get an affordable one which turned out great!  10 mins in and out)
Liam is currently napping while V watches tv and I mess around on here, later Liam and I will volunteer in the nursery at church for evening service.

This weekend was exactly what I needed, I could really use another two days like this!  My stress level has dropped significantly (Thank God!) and I feel as prepared as I can be for the week ahead.

Much Love,
Jen

Countdown

Yesterday we had another appointment with the developer of the subdivision our home will be built in.  V and I both expected this to be a "pick out your finishes" appointment.  Not so much, we reviewed the blueprints (again), asked for one small change that won't affect the blueprints really and basically gave our approval.  Ugh.  Two weeks wasted.  You see the developer didn't put in a request for our permits yet, he'll do that now and it will be 2-4 (or more) weeks before they break ground.  As it pours rain right now.  It's a miracle it hasn't snowed yet and there is no frost to break so I'm anxious (to say the least) for them to break ground.  So far this *shouldn't* effect our move in date which is now a firm March 29th 2013.

I know this process is going be a big test in patience for me but right in this very moment it's just adding to the enormous amount of stress I'm already under. For the last week I've been right on the verge of throwing up.  I would love nothing more than a long hot bath right now, something that is not an option in our current home.  I'm counting the days until I can at least start packing and truly day dreaming of settling into our forever home.

The countdown is on, even if I spend more than a few days stuck at some numbers.

Much Love,
Jen

Juggling

Some days I think I rock at this whole super-wife, rockstar-working-mom gig.  Then there are weeks like this one.  Oy vey!   I'm sitting at work sipping a much needed latte and I could easily fall fast asleep right here, right now.

Some weeks I can rock out five or six healthy dinners, get lots of quality time in with Liam, have the whole house fairly well organized, all the bills paid early and even get a workout or two in.  Not this week, it's Friday morning and I haven't gotten a single workout in, there is hope for tomorrow...kinda.  The bills that are due this week are paid but I'm not ahead of the game like I want to be.  Some of the house is clean and I made....one healthy dinner.  In all fairness with Liam's fever that lasted Monday-Thursday morning I was just making him things I knew he would eat so he would eat something (homemade mac and cheese with peas).  I haven't skimped on the quality time with Liam because it's always at the top of my priority list. I only straightened my hair today because we have a meeting with the builder right after work, otherwise I'd be rocking wet-hair-pulled-into-a-ponytail style.

I'm exhausted.  I feel like I'm just barely keeping up and no where near getting ahead.  I feel like I'm juggling but I keep dropping all the balls.  I don't feel like a failure though because I'm still trying, you only fail if you give up.  All I can do is make a list and start checking things off one-by-one.

I'm sure all moms feel this way at times, maybe we put too much pressure on ourselves, who knows.  I don't think I'll ever be a "whatever" kind of mom, I'm always going to want to have it all; tons of quality time with Liam, clean house, healthy dinners, finances in check, happy family, career....I want it all and damn it I'm going to bust my ass until I have as much of this dream as I can.

Not entirely sure if there is a point in there, just a healthy dose of honesty about this week.  I'm just glad the election is over, we all know the result know so maybe people will keep a few more opinions to themselves, one can hope!

Desiring Disconnection

I am no relationship expert.  Shocking? Nope.  I've been on my own since I was 16 years old, my "childhood"  was dysfunctional at best.  Sometimes managing relationships is exhausting to me.  Not all the time and not all relationships, my favorites are the one that just seem to work (like my bestie, E.)

I find the most challenging to be those of "family", specifically V's family.  I have no personal experience to compare them to and while I love them dearly they can be utterly exhausting.  Sometimes I just want to disconnect from it.  I just want a break, I don't want to have to work so hard to manage these relationships.  No I'm not going to throw my hands and walk off into the sunset with V and Liam (although sometimes I do daydream of it).  I just find it so challenging sometimes, I mean I have my mother-in-law on my facebook, cell phone, work and personal email.  There is no breathing room!  Oh yeah did I ever mention that V's family owns our home! (we rent from them) Essentially everyone has a key to our house, they are good about not just coming over (that wasn't always the case).  I just feel like they are a little too interlaced in every aspect of my being.  I need room people!

Am I just being hormonal, am I the only one that goes through this? Is it just me?  (someone say no!)

Much Love-
Jen

On Reality Checks

from google images

God hands me little reality checks, and I need them.  Lately I've gotten a series of them, gently reminding me that things could be much worse and to be thankful for what I have.  I don't know about you but I never get one little reality check at a time, it seems when it rains it pours.

Sometimes I feel like I'm standing still just observing my life and so many around me are going through something so difficult and I'm helpless.  I stand there with a heavy heart, empty hands that are clinched in prayer yet I feel so helpless.  Parents are struggling with their children's illnesses (cancer) while trying to manager their own (cancer).  Marriages are failing apart, two of my co-workers are in the middle of nasty divorces as is a close friend.  I could go on and on, my heart breaks for friends/co-workers etc.

I don't consider where I am in my life perfect but I have so much to be thankful for....and it's time to be mindfully thankful each day.

Today I am thankful for my son's health and my God's grace.

2 Corinthians 12:9
“My grace is sufficient for you."

Much Love,
Jen

Would You Parent Differently?

I've heard this question asked of older generations, the whole "in retrospect" concept but that isn't exactly what I'm talking about here (although I gladly invite any advice etc).

What I'm focused on is this; If you knew the baby in your arms would be your only, would you parent him/her differently?  As the reality that Liam will be our only child finds rest in my soul I think about this question/topic often.  Knowing he'll be my only child and these days are fleeting I am so much more willing to snuggle him extra at bedtime, play longer in the tub etc.  I'm beyond grateful that I got to have one amazing baby, he defines Miracle Baby.

Some days are easier than others, I feel like this decision was taken from me due to my autoimmune disease but it's the smart thing to do, it's my reality and there isn't much that will change it.  I'm not saying I'm a better parent but I do think this perspective makes me more patient with Liam, I lavish my love on him even when I'm tired and would love some time to myself, I look closely at him with an intentional smile trying to soak up every single moment and store it in my soul.  I intentionally seek extra time with him, I schedule anything I can when he's napping (on the weekends) or asleep for the night (during the week).  Daily I promise him that no matter what I will be there for him, I will love him and support him. 

It's a hard thing to know; that regardless of whether or not you could have more children...you shouldn't.  (I started to go into the details of why we have chosen to not have more children and it got a bit too emotional for me.  The facts are I have one amazing miracle baby that means the world to me, I have more than I could ever ask for and I am grateful.)

Much Love,
Jen

Edit to include: I kinda lost my train of thought last night....So what I was getting at is, if you knew that baby/child in your arms would be your one and only, do you think you would do anything differently?  I'd love to hear feedback!

On My Auto Immune Disease...An Update

Yesterday I had another appointment with Dr. T.  Or so I thought... I arrived at the lab a few minutes early for my blood work, there was no order, I walked over to Dr. T's office to get one only to learn my appointment was mysteriously canceled.  I sat around while a couple woman ran around trying to figure it out, we all know by now I get anxious about my appointments...this didn't help but in similar situations I always tell myself "we are all just humans, mistakes happen, as long as it can be resolved then no harm no foul."   Orders in hand I headed to the lab to wait an hour.  Thankfully I managed to be-friend one of the receptionists, she noticed I'd been waiting forever (45 minutes) and went back to tell them I am a oncology patient and need my blood work done now so I could make my appointment.  While I do not have cancer I am seen in the oncology department so I was ok with this and it meant I got in and out.  Back over to Dr. T's waiting room I went.  While I was waiting the practice administrator came out to introduce herself to me, she was so helpful while I was battling insurance, it was so sweet that she wanted to meet me and congratulate me on winning! It was just another few minutes before I was on my way back to an exam room.  As usual I was weighed, I've managed to maintain my weight for the last 4 months, I'm currently 14lbs below my per-pregnancy weight! Thank you My Fitness Pal! (it's free, sign up, message me and we can buddy up!)

Before I knew it Dr T came in.  I'm so thankful I get to stay in his care, even though my appointment was mysteriously canceled he took his time to talk to me about different things...like the fact that about 50% of the time when ITP is discovered and there is another associated disease existing and my fears.  I was so freakishly nervous.  Since 6 months have passed Dr T. is no longer concerned about associated diseases, he thinks I just have a idiopathic chronic case of ITP that will be intermittent for the rest of my life.  This is good news, the other associated diseases are scary....so scary (message me if you have specific questions, I'd be happy to discuss those).  He even said "I don't want to cause you to worry more by telling you this"... I reassured him I prefer the education....I'll worry anyway.  He also said I really shouldn't worry about having more children, that if I do get pregnant and my ITP worsens during my pregnancy I can do the IV treatments (this is an 8 hour treatment, in the hospital! Yikes!). I would be unable to do steroids while pregnant.  I'm still petrified of having another child.  He reassured me that he doesn't think I will ever have normal platelet numbers but I don't need them to be normal to be ok (normal is over 150k), as long as I can stay around or above 80k I can live a normal life full of the activities I love.  My numbers weren't available so I headed back to work (two hours late) and he said he'd call me.

I went to a movie with my dearest friend E. at 7pm thinking I wouldn't hear from Dr T until the next day.  Nope, I missed his call twice around 8pm.  He called me again at 9pm and again took time to talk to me.  He mentioned that I was more nervous than ever before.  He again took time to talk to me about how "this is not a death sentence, it's just annoying....you are doing very well and I expect your recurrences to be spread out over years not months".  My platelet numbers have continued to lower about 20% to 90k.  He reminded me of what to watch for and reminded me I don't need an appointment to have my blood checked, to just call him and I could go over on my lunch and be checked, he would call me.  I'm just so thankful for him, he gets me....he doesn't just brush off that "I over think this whole thing" (my words).  I have another appointment in August. (Side note, I'm no longer anemic! Yay!  I still have to stay on Iron for 3 month but that is fine.)

So it is good news, I'll probably need treatment again in the fall.  It will probably be steroids...while the side effects are rough...I prefer them because the thought of the IV treatment terrifies me (did I mention they are $10k a pop?).

I know I say it all too often but I'm really going to work on looking at the big picture and stop worrying about the little stuff.  I can't plan and control everything, or really much at all.  At the end of the day I still have a pretty great life, sure a few things could be different and better but over all I'm pretty darn blessed.


Other related posts:
My Diagnosis with ITP
What is ITP?

Much Love,
Jen

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.....

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!

Intentionally Untitled

Hmmm well this won't be a ray of sunshine post, sorry.  Right now I have so much bouncing around in my head it's hard to even focus.  I have another appointment with the hematologist today, in two hours actually.  I could have a wide variety of people go with me but I'm choosing to go alone and I'm not sure why.  Perhaps the back of my mind hopes that I just won't need anyone, that I'll get good news...

My medication is not cool.  It makes me feel old...I'm so tired, achy and anxious.  I'm afraid to tell Dr T it makes me anxious, I don't want yet another pill to take right now. I feel like I take a handful every morning as it is.  Doesn't matter if it helps, please God let it be helping.  I found more bruises again this morning, they pop up suddenly in strange places, places you would remember hitting that hard. I feel like I should wear long sleeves and pants 24/7 so no one even sees the light ones that spot most of my body.

Only time will tell I suppose.  The worst part about all this is Dr T can't tell what symptoms are what since I just had a baby.  Rapid weight loss, hair falling out, exhaustion etc it could all go either way (except the bruises and extremely low platelet count).  Sigh.  I just try to keep reminding myself God saw this coming, and he's got it all under control.  It's all going to be just fine because it has to be.