Happy National Running Day!!!!

This could possibly be my favorite holiday ever, ok after Thanksgiving!


Some background on my life as a runner; In Sept of '11 I was diagnosed with an Autoimmune Disease called ITP. I also had a three month old baby boy, to say I was stressed out would be taking it all very lightly. After not dealing with the stress very well for a few months I started running, slowly (half because I've had Asthma my entire life half because it was Feb. in MT=snowy). Slowly I started to feel some control over my health again, also the last bit of my baby weight came off....plus some. I had more energy and much needed me time, needless to say my husband was a huge supporter! In July of last year I did my first Half Marathon, it was slow going but I did it!

Today I run as often as possible which adds up to about three times a week. I run races as often as I find an interesting one. :) Running sets me free, whatever stress I have I can think through, pray through or simply listen to music of the pounding of my feet on the ground. It's heaven, it's still my "me-time".

I already did a lunch time hike with a co-worker and new friend today but I'm planning to get a few miles in tonight once my day at the 'ol 9-5 is over and done (1.5hrs!). I mean I have to celebrate the holiday! Perhaps I'll even attempt a run with Liam in the jogger....ek!

This is one of my all time favorite paths to run in my fine city, the picture is not mine but off of Google Images.

 

Who else is with me?

Much Love,
Jen

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.!

The Thoughts in My Head

I've writen, edited, deleted and re-writen this post more times than I care to admit. It's time to just give in and publish it.
-Jen
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You know the kind, the ones that only surface when you are tired and don't have the energy to keep them at bay or during your dreams when you're not totally in control.  The kind that pop into your head suddenly at 3am and keep you awake when you are desperate for sleep.  Yeah those kind.

I've been avoiding the fact that I had routine blood work done in November, I wanted to establish care with a standard 'ol internal medicine doctor and have my cholesterol checked for good measure.  We discussed my interesting health history (including diagnosis and remission of my ITP) and it was decided to check my platelets for good measure.  I was told if everything were fine I'd receive a letter in the mail with a breakdown of my blood work.  Instead I received a call. I'm no longer in remission.  After just three short months my platelets have gone down by more than 50% and are were below normal, but not at a dangerous level.  Right now my internal med dr is ok with monitoring me again in a few months, depending on that result I'll have to find a hematologist (I can no longer be treated by Dr T due to my lovely insurance).  I'll be checked again in around 60 days as I'm planning another Half Marathon.  The time has come to have my numbers checked so it will be in the next three weeks as I'm about to start training for my second half marathon.

This news was a blow, obviously not as bad as last time but a blow none the less.  I told only a couple friends and waited to tell V because his uncle was in the hospital, he had a heart and was still being monitored.  I needed V's uncle to be a little better before I could burden V with this news.  After a few days uncle was released and Thanksgiving had passed so I brought it up to V, he handles things differently than most people (I think), and often times I have to tell him exactly what I need from him because he follows my lead (if I'm freaked out he freaks out, I'm typically his rock).  So in this instance where I was sad and a little freaked out, I needed him to be my rock.  Initially he got kinda defensive which hurt.  I had to explain to him that I'm not as freaked out as last time and that this will not determine how I live my life but I am sad and I should be allowed that.  Once he understood where I was coming from he was supportive again.  It was strange this time around, I didn't want to hear all the puppies-and-rainbow business, I just wanted to be sad for a moment.  I'm really relating to Christina on Parenthood right now though her diagnosis is clearly much worse than mine.

The holidays were nice, they allowed me to been to push all this to the back of my mind and just sort of be on auto pilot about it all.  I reminded myself that I don't look sick and I don't feel sick, I can still have a relatively normal life and best of all it's not genetic so Liam has no greater chance of having it than I did.  With "the holidays" long gone it's not been as easy to stay busy and a little fear has crept back into my mind.  I've started having nightmares about returning to the Cancer Specialists office for treatments but this time it's the treatments I've feared this whole time.  I have dreams that Dr T is disappointed that I'm not well, as if I've done something to make this return.  I find myself thinking about the strangest details of it all at the strangest times.  I realize this is all just the junk in the back of my mind making it's way forward when I have little control, you know because I'm sleeping (or at least trying to).

I'm still working out, about to start training plan for my next half marathon.  I'm still doing bodycombat for cross training.  I'm still being me and being a wife and mom, still enjoying life.  I refuse to let this define me, I'm just sad that it's even still a part of me, I'm sad I have to accept its back in again.  I have to adjust to the fact that I have a chronic disease for the rest of my life...again and that is going to take some work.  I feel like I'm sort of back at square one, maybe square three or five but back towards the beginning of this whole thing and that is disappointing.

My Body 18 Months After Baby

This post is full of TMI so if the thought of that makes you qweezy turn back now, you've been warned.


First I'll start with the elephant in the room, or lack thereof.  I've lost 63 pounds since having Liam.  I gained 49 of those while pregnant.  I had a lot of swelling but it still took a lot of effort to loose the weight.  I've kept it off now for just shy of a year.  At first I just lost the weight, I was skinny fat.  I looked thin but had little muscle to speak of.  I counted calories {using MyFitnessPal.com}for over 9 months straight, almost every day.  Last Spring I took up running jogging, this improved the condition of my body immensely.  It also kept me sane while I dealt with my Autoimmune Disease.  Although I'm now what many people call skinny (I prefer healthy) I'm not as confient as you would think.

First I have stretch marks, the worst of which are on my breasts.  Most of them have faded greatly....except on my breasts.  I got those nasty purple ones that are deep as the grand canyon on my breasts.  I tried hard to breast feed Liam for the first three months of his life, during those three months 90% of my milk was in my right breast, it was literally a solid D and the left one was a small B.  I'd also like to take a moment to say not all women get stretch marks just on their breasts and bellies, I have some in the oddest of places.....I'll leave it at that.

Which brings me to my next topic; my breasts or lack thereof.  You know how some women joke about their breasts resembling tube socks with sand in the bottom after having a baby?  They weren't joking.  For a wide variety of reasons (including my weight gain and loss) my breasts are a very small B on a good day (you know those days when you had too much salt the day before?).  They also are empty feeling, I don't know a better way to say it than that, it's odd at best.

And lastly my stomach.  While it's flater than I would have imagined it would ever be I still have some loose skin around my belly button.  It's not horrible but it's weird sometimes.  I'm not sure I'll ever be able to get it even sort of tight again.

These things leave me uncomfortable even sorta naked, even around my husband.  He doesn't seem to mind but I dunno, I guess I'm still just a little uncomfortable in this body.  It still feels a little foreign to me.  Please don't think I'd trade Liam for my old body because I would NOT.  I'm proud of this strange new body, first and foremost it gave me Liam that in itself is a miracle I would not trade for anything.  This body made it through the crazy experience which was (and unfortunately looks like will be [more on this later]) my Autoimmune Disease.  Last but not least this body did a Half Marathon in 2 hours and 42 minutes.  I really am in the best shape of my life, it's just superficial stuff that bothers me.

I guess my real point is I'm not as confident as you would expect me to be, even though I'm certainly in the best shape of my life.  I have a co-worker who is on her journey to loosing some weight, she constantly says things about wanting to look like me and sometimes I think to myself "you don't want these boobs or belly trust me."  I suppose the real lesson here is to not compare ourselves to others, no matter what they may look like etc. Don't judge a book by it's cover.

Much Love (and Honestly)
-Jen

It Still Stings

This has been on my heart for a while and it's time to get it off.

If you've read my blog for any amount of time you'll know three things about me: I'm a fitness nerd, We had a difficult time getting/staying pregnant, and I had an Autoimmune Disease for just under a year.  The last one was a bit intesnse but I feel like it really shaped me, taught me some things and I'm blessed beyond measure that it went away (after I was told it was a chronic and lifelong issue).

My baby toddler is a miracle, an absolute miracle....it's a miracle I got pregnant, stayed pregnant, delivered him safely into this world without a c-section.  He's healthy, easily the happiest person I know and just an absolute joy, even when teething.  During the 11 months I dealt with my ITP V and I came to the forced conclusion that it was best I don't have more babies.  It hurt, a lot.  I felt like the decision was taken from me (even though we weren't sure we'd try for more children before my diagnosis).  Eventually, aka about two weeks before I was told I was in remission, I came to terms with it, I even felt at peace with it.  Then on Aug  20th, nearly 11 months to the day after I was diagnosed I received news I never expected; I was in remission.  My heart lept and one of the first questions was "Do you think, if I am able to get pregnant again, that it will trigger my ITP to come back?"  Unfortunately the answer was "yes, although we have no way of knowing until it happens."  As you can imagine V wants me to stick around, Liam too.  V is not open to me getting pregnant and playing "Russian Pregnancy Roulette" as he calls it.  Who can blame him, I mean I don't want to leave him or Liam....nor risk loosing a pregnancy/baby....or my life.

But...I yearn for another child....truth be told another pregnancy.  I haven't morned the fact that I'll never feel the little flutters of a baby in my belly, never see my stomach grow and grow with life inside again.  I tear up at the sight of a beautiful pregnant woman.  And yes I get jealous of pregnant friends just as I did when we were struggling to get pregnant with Liam.  Recently someone gave back some of my maternity clothes, she didn't remember that I told her we would be unable to have more babies.  Gosh did that hurt.  There in my hands were these clothes, items I invested in with hopes of at least one more pregnancy....clothes I lovingly wore as I joyfully carried my Liam.

I know what you're thinking: Then adopt!  Or foster!  Both of those things are potential options in the future but neither of them replace the longing I have, nor will they ever.  If you don't understand that is fine, you probably didn't have to try to get pregnant or maybe you never feared you'd loose your pregnancy/baby.  Thank God for that for you, it's ok you don't understand.  I don't know how much time will have to pass before my soul finds true rest with this....maybe it never will but I know it's the right decision.  Like I've said before if I could have just one thing for sure it would be more time with those I love.  I won't risk loosing all the time I could have for the chance of another pregnancy/baby.

I guess my point is it still stings, I wonder if the day will ever come when it doesn't anymore.

Doing Good & Running

I've wanted to get a few more races in this fall before the snow starts to fly and I'm trapped inside for months on end.  I  SO was excited when my bestie wanted to do a local 5k that benefited women who can't afford breast cancer screenings and treatment.  Last weekend we ran that 5k together and it was awesome!  We arrived bright and early, I had hoped to run the 5k with Liam in the stroller but he had started to get a cold and it was only 25 degreed that morning....no race for little Liam.  There were 1,100 women almost all of whom were dressed up, Bestie and I were Batman and Superman respectively.  We had a good time considering she recently had jaw surgery and currently had a cold (final time 34:15).  After the race we took our turn in the photo booth, got some snacks and just hung around.  What a lovely Saturday morning!

The next charitable 5k I have planned is in chilly November and it actually put on by the nurses from the Oncology Center I had to visit for my Autoimmune Disease.  The proceeds go to different types of cancer treatment etc.  It feels good to go running but it feels even better knowing the ~$25 registration fee is going to a good cause.

Now if I could just kick this cold and fit in a good run this weekend (probably not going to happen).

Happy Friday!
Much Love,
Jen

I'm in Remission...

Monday morning I had another scheduled appt with Dr T (Hematologist Extraordinaire).  The day felt different from the very beginning.  For one thing I've been very sick the last week and half.  I ended up with walking pneumonia and pink eye. Fun (not).  Needless to say I was too tired to get up extra early to prepare, I slept until the last possible moment then got up and got ready as quickly as possible.  I dropped Liam off and headed to the hospital.

At the hospital I got my labs done in record time, not even enough time to worry about what I anticipated to be a rough appt.  I didn't have time to think about how I'd been in the emergency room a week before (long story, I was so sick I started throwing up and got very dehydrated) and was already told my numbers were below where Dr T wants them.  I checked in at the Cancer Center where Dr T's office is and sat with my kindle fire after a friendly chat with the world's nicest receptionist.  Moments after I found seat in the lobby three people checked in behind me, one of whom was frail thin and was trying to hide her hair loss under a cute cap.  I felt a flood of emotions for this woman and a flood of emotions surrounding my condition... what have I been whining about?!  Look at this woman, she is clearly fighting for her life and I whine about a small blood disorder! I felt like the world's biggest jerk.  I couldn't focus enough to read my book.  I was ashamed of all the fear I've had over the last 11 months, totally and completely ashamed.

It wasn't long before I was called back, weighed, had my blood pressure checked and was waiting for Dr T.  This wait took longer than usual.  I sat alone in the exam room attempting to read my new book "Wild".  Time seemed to drag on, but apparently it was with good reason.  When Dr T came in he almost immediately said Your number is 308k!! (Normal is ~150k, I had been at 70k just one week before)  He looked at me, seemingly waiting for me to be jubilant.  My reaction?  Huh. Wait, WHAT!?!? What does that mean?!   Apparently your immune system can go haywire or bounce back very suddenly.  Our discussion was short and sweet while he did a routine exam.  I don't need follow up, people in remission don't need further care, I am no longer considered to have ITP.  He expects my numbers to level out and stay normal.  I just kept saying this is not at all how I expected today to go! My husband is going to have a heart attack!  Dr T walked me out, shook my hand and told me I looked great.  On the way out of the hospital I called V balling to tell him the news, he was as shocked as I was.

Unfortunately I had to head straight to work, I shared the news with my co-workers and boss.  It was neat to see the shock on their faces.  All throughout the day I tried my best to process this.  I took time to thank God and tell him I wasn't ungrateful but surprised, very surprised.  That is the part that makes me saddest.  I never ever expected this to happen.  I never asked for it, my reasoning was that God doesn't always heal people, even when they ask.  I told people that I was thankful to not look sick, or feel sick and I was ok living with for the rest of my life.  It never occured to me that it was even an option for me to get better, but why not?  Why wouldn't God heal me?  I can't explain why I felt this way but I'm sad about it.  In retrospect it really bothers me that I never considered it an option for God to heal me, even when friends and loved ones suggested it as an option I quickly countered with what I thought was "reality".  Ye of little faith.

Being free of this disease changes a lot of things, it opens the door to possibly trying for another baby, someday.  I feel like I have a new lease on life.  I'm so thankful, so very thankful.  All the praise, honor and glory to God!


-Jen

Calmness and Peace {Dr. Appt}

Last week I had my first annual exam with my ob/gyn since having Liam....you remember Dr. Wonderful, yes?  Dr. Wonderful is an amazing doctor.  I know far too many women to dislike, even hate their ob/gyn and it saddens me.  The person who brings your child into this world should be wonderful to you, I wish everyone had a doctor like mine.

I sorta looked forward to my check up.  Crazy huh?  Compared to my visits with Dr. T (Hematologist extraordinaire) an annual is a walk in the park!  Plus I'm nearly 15lbs below my pre-pregnancy weight, I've managed to maintain this weight for around 6 months and I'm darn proud of myself for it.  Also I love Dr. Wonderful's staff, they are equally as wonderful!  I walked in and the receptionist immediately says to me "You cut your hair!"  I was shocked that she even remembered me let alone my hairstyle after a year.  Love.

After confirming all my info and signing in I sat with my kindle fire hoping to read a bit of my newest book (Wild by Cheryl Strayed) before being called back.  Two clearly pregnant women were called back and shortly after so was I by my favorite nurse.  Happiness.  Nurse D and I caught up while I was weighed and had my blood pressure taken, she told me to strip down to nothing but the cape she pulled out and Dr. Wonderful would be right in.  I picked up my kindle after stripping down hoping Dr. Wonderful would have to do a few ultrasounds and I'd get a few pages in.  No such luck one page in and knock-knock.

Perhaps I have a strange bond with Dr. Wonderful but I was glad to see him.  He's older than both V and I, at least old enough to be either of our parents, maybe mid-50s?  He's easy to chat with but gets right down to business.  Boob exam, ugh I hate them but they are a necessary evil.  I brought up my ITP diagnoses and Dr. Wonderful delicately said "Hmm do you have future pregnancies planned?" I twisted my mouth a little and said "no..."  He seemed ok with that answer.  I couldn't help myself "I can't help but notice you didn't argue with me on no more babies, it's for the best isn't it?"  Dr. Wonderful "Well.  It's a bigger decision for you to possibly expand your family.  But it's a tough decision to be taken from you.  You could have more children, we could treat you and manage your ITP but it means more steroids.  I have some articles for you, I'd like you to be educated before you make a final decision.  I like that you are on Mirena, it's a good birth control for you as it prevents periods since you risk heavy bleeding."  The rest of our conversation was about my half marathon and how proud of my Dr. Wonderful is.  He kept saying "You look great!  Your working out, your organized, you're WEIRD!"  I just laughed.

After my exam I dressed and met Dr. Wonderful to get the article he mention and a rx for an inhailer for my asthma.  He again congratulated me on doing so well, told me I looked great and said "Well, see ya next year!"

After I left I could have returned to work for an hour but decided to take that time for myself, well kinda, I wanted to get some stuff cut up for dinner and change into comfy non-work clothes.  I wondered around my silent home picking up things and thinking about my appointment.  I had this wonderful sense of calm and peace.  I was thinking to myself while cutting up ingredients for dinner "If I could have one thing, anything, what would it be?  More time.  More time with Liam and V, with my friends and loved ones.  If I do get pregnant and my ITP goes haywire I truly could die and I would not get more time with anyone.  I would make a choice that would screw up the one thing I want most; more time with those I am already blessed to have.  Yeah, no more babies is the right choice for us.  Hopefully one day it won't sting as much but it's the right thing."  There were no tears which is rare.  In my hearts of hearts I want another child...a sibling for Liam, but more important than that is cherishing what I already have.  I put all the prepped ingredients in a bowl and headed off to pick up my sweet Liam.  I hugged him extra close and thanked God for him with tears in my eyes.  I am beyond blessed just to have him and get to be here to be his mom.

In about a week I have my next appointment with Dr. T (Hematologist extraordinaire), I'm anticipating treatment since I believe my platelet numbers have held the same pattern they have since being diagnosed last September.  Right now I feel good about it, I feel like I know what to expect and I have a lot of pride about accomplishing my first half marathon. 

Much Love,
-Jen

A year ago today I was in labor....

It's hard to believe.  I've spent the whole day glancing at the clock and remembering exactly what was going on at that time one year ago today.  (You can read Liam's birth story here.)  I'm finding it difficult to put into words the emotions I've experienced today but it's been wonderful to look back on.  I'm literally sitting  crying as I type and re-type this trying to find the right words to express the joy I have because of this little boy, the happiness he's brought to my life in the last year and what a blessing he is and I can't.  There are no words to express how much I love him, how much I love being his mom and how I would do anything, literally anything, for him.   All I can say is I believe in miracles, I know they happen because I'm a mom and when you look at me [medically] on paper I probably never should have been able to have a baby and I do, I have the most amazing baby boy on the planet and I am the luckiest momma there is.  One year ago today my life changed forever because I was in the process of welcoming my son.


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

I'm still alive!

Whew, life has been so busy, but I love it!  I've felt at a loss for topics to write about lately, this blog is really my journal and a place for me to vent, explore emotions and release....but with all the running (more like jogging) I've been doing I've been able to explore emotions and release while getting my sweat on, so I've been a bit MIA here, sorry.

Things are good, it's very Spring in MT....which doesn't mean a ton yet, it's a little chilly and we've had some rain but Summer is a coming, things are starting to green up!  Liam and I are itching to start hiking (I scored a framed pack to wear Liam in and already used it once!).  I day dream of taking the day off work to take Liam to a local water park (more like park with water feature, same diff).

Liam is amazing, he now has two teeth (bottom center), scoots, loves his Johnny Jump Up and the dog more each day.  He can say Mom-mom and Dadda but mostly uses Da-da-da when not babbling in general.  He eats anything you put in front of him food wise, except carrots....he hates carrots.  He loves feeding himself! One of the meals I often make for him is pureed turkey breast with whole wheat spiral noodles with a little basic marinara and a veggie (butternut squash is his fav), he loves to feed himself the noodles.  He's also a pro with his sippy cup.  I think he's right on the verge of crawling and waving.  Where has time gone?!?!?

My heath is good, another month until my next scheduled appt with  Dr T and I'm feeling good.  Some days I worry and over think this whole crazy thing so I'm learning to just breath and use critical thinking skills to handle the hard moments.  The hardest times are when I start to think long term/big picture since my autoimmune disease is pretty unpredictable, while all of our futures are uncertain to some extent, mine is more so...this is no bueno for the planner in me....but I'll get there.  One day at a time.

V and I are fine, we've hit a bit of a rough patch as all marriages do.  Hmmm... since I'm writing from work I think that is all I'll say about that.

Work is great, all three of us are training for the marathon in July (including the new girl, who is amazing)...this has helped the over all attitude of our office.  There is a lot to be said about exercise increasing happiness.  Work is also busy which makes the days go buy, that coupled with the raises I've gotten in the last year make it all worth while.

The only other thing bouncing around my mind today is my 10 year reunion is coming up.  I didn't have the most enjoyable childhood, to say the least....I'm uncertain if I'll attend any of the events.  It doesn't help that the reunion it's self is the day before the marathon (minimum of two hours away).  I'll probably decide at the last minute if I'll attend.


So there you have it, all the goings on of my little world.  I hope each of you are well, including all the preggos out there!  Summer is going to be amazing and by the end there will be LOTS of new babies in our lives!

Bad Blogger

I feel like I've neglected my blog lately. I have been so caught up in my whole "situation" with insurance that it's taken a vast majority of my spare energy. And let's face it, who wants to hear about that all the time? No one, not even me some days.

At this moment it appears I have a chance of winning the battle with insurance. It boils down to the other doctor only has hours one day a week that I can see her (her restrictions, not mine)....since my auto immune disease can be dangerous if not well monitored my insurance might be willing to allow me a temporary continuance of care (~1 year). I'll let you know what comes of it; hopefully I'll have answers on Tuesday.

In other news work is going well, my boss had hired a woman in our department that turned out to be a lazy pos. I'm not so great at hiding my feelings (imagine that, lol) and it was rough sailing for a while there because of it. Well the new woman finally quit. My boss was too prideful to admit she had made a bad hire, and with two other open roles on our team I can understand to an extent. I've stepped up and have created some training documents and will be doing some traveling to train members of our team. I've also held down the fort with the now 3 open roles (two of which should be filled shortly). Thankfully my boss has seen this. She can be a handful, but when things are good they are really good. I found out last week I'm scheduled to get my third raise in 1.5 years so I must be doing something right. These aren't huge raises, I'm certainly not breaking the bank, I took a 10% pay cut to leave my old very stressful job...I'm almost back at that wage which was a decent income.

On the marriage home front....V and I are getting ready to celebrate four years of marriage. Not a very long time in the grand scheme of things but with all we've been through I really wanted to close the book on year four and welcome year five with a trip away. Liam is slated to sleep over at G'ma and G'pa's house while V and I travel 3 hours away to spend a night in a fancy hotel, attend a concert, shop a little, enjoy new restaurants and take a little time for ourselves. V isn't terribly excited about the concert, which is typical, but I know he'll have a good time once we are there. This will be really good for us.

Then there is Liam, the reason my world spins. My gosh, he's amazing! He is a professional grasper now, I can put virtually anything sorta near him and he will bend completely over and get it. He loves feeding himself little treats! Today the three of us just stayed home in our jammies, it was glorious to just play with him, nap and snack....I wish today didn't have to end!

So there you have it, all the goings-on of my little world. I hope each of you is well!

Much Love,
Jen

Truth

One of my all time favorite quotes:

Sanity {Temporarily} Restored

My battle with insurance has not ended, although I can see the end of the road.  Unless something unforeseen happens I will have no choice but to switch doctors, I can not tell you the anxiety this has caused me.  I don't think many people around me understand this stress but I don't expect them too.  I don't expect many people to understand what I'm going through, frankly we are too young for this whole thing.  No one expects this to happen to them, I have no control over it but I have laid it down in my heart, I'm finding peace with what I can, making choices where I can and choosing to accept the outcomes as God's plan.  I'm choosing to accept that I'll have to change doctors, that this new doctor will be the one to treat me when/if my ITP worsens, she will treat it when/if we have more children (the thought of dealing with chronic ITP and a pregnancy let alone delivery terrifies me).  I'm choosing to be joyful that, while I do have a disease that likely will be for the rest of my life and will cause complications, I am not in pain....some days I can even pretend I don't have ITP even if it's for a short bit because I don't have constant/obvious reminders.  I choose to be joyful about this.  I'm finding the most joy in the fact that this is not hereditary, the likelihood that Liam will get it is no greater than anyone of you getting it, joy.  And after all Jer 29:11 say that God has "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."  There is joy in the fact that God himself has plans for my future.

I'm also allowing myself more time doing the things that reduce my stress and therefore restore my sanity even if it's only temporary.  Things like organizing, cooking and working out help me feel some sense of calm, control and peace in the midst of this whole crazy thing.  For the most part I can still control the overall health of my body (with healthy meals, working out) and having a tidy and organized home reduces my stress level in general.  V has been really great, he's taking things one day at a time too and helping out each day....I can't tell you how much this means to me.  Monday I went to the gym after work and did 5 miles (jogging), I did not stare at the clock or convince myself to leave early due to mommy-guilt.  I just worked out until I felt done then went home and made a quick but yummy and healthy dinner for us, played with Liam until his bedtime (V and I take turns putting him down and it was V's night).  I took a long hot shower after Liam went to bed and enjoyed some cuddle time with V (because he had cleaned up while I showered).  My soul felt great rest and restoration.

I can't promise I'll always feel so calm and restored but I've decided to allow myself to feel what I need to during this process, no matter how long the process ends up being.  I'm done worrying about what others will think, done trying to please others and listening to the noise that some people put out.  I will focus my energy on doing what is best for me and my family and I will enjoy every happy moment I can with no regrets.  I'm allowed to be scared, allowed to worry, allowed to make the choices that are best for me and my family. 

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.....

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.

I'm Not Dead

Nor have I fallen off the face of the earth. :)   This time of year is always busy then you add to that an adorable 6 month old, work, marriage, my pinterest addiction (leave a comment if you need an invite!) and trying to figure out everything I need to do to get my personal training business up and running (and oh yeah work out cuz no one wants a flabby trainer) and YIKES is life busy and full...but I wouldn't have it any other way.

Liam is amazing and growing so fast!  He now eats two meals of "solids" per day, he's currently on green beans which he loves!  He's such a sweet and happy boy, last week at his 6 month well baby visit he was 17.6lbs, 26.5 inches these measurements have in between the 25th and 50th percentiles (which is on track and thus fine by us) and his head continues to be in the 75th percentile and as our nurse said "big brains!" lol!!  Liam loves to stand and has recently mastered sitting by himself, crawling is just on the horizon!  He's exactly on track for all his milestones.  About two weeks ago he met Santa and it was the most adorable thing ever, Liam had no fear as we handed him to the man who was dressed strangely, he just looked at him with interest and then tried to eat his beard! LOL!

Life seems to be moving at break-neck speed these days, before I know it Liam will have lived longer outside my belly than he did inside, that is hard to wrap my head around!  He's typically an amazing sleeper but last night woke up every 2.5-3 hours (teething maybe?) and ya know what?  I actually sorta enjoyed scooping him up and snuggling him as he fell back asleep, I just kept thinking that soon he'll be so big and won't fit into my arms the same way and someday he won't want to snuggle like this (most 13 year old boys don't want to snuggle their moms, right?) so I just sat there each time and loved on him and soaked in these special and fleeting moments.

In other news I appear to be holding my own with the whole auto immune disease, so far all signs suggest that I'm not ok *knocks on wood*.  I haven't lost any weight that I know of and I feel over all ok.  Another month until I see Dr T and find out if I'm correct or not.

That is enough to catch you up for now.  I'll try to up date again soon but likely won't until after Christmas so Merry Christmas to you and yours!

 Much Love
-Jen

Dr Update 11.28.11

Bullet-Point Update :)

• Coffee in hand off to get blood work done, the earlier I arrive the longer I wait....boo
• Lost another 3.5 lbs without meaning too....panic
• Dr T (hematologist extraordinaire) comes in;
• platelet numbers are lower again but still acceptable
• stay off steroids
• check yourself for lumps and bumps monthly (ITP is associated with lymphoma)
• come back in two months (WHOA!)
• not concerned about weight loss
• asks if I want more children....yes Dr T I do (apparently he has four, whoa!)

I can hardly believe I get to go two whole months without blood work and visits to the oncology offices!  I'm not happy I lost more weight, I'm concerned about getting too low, I'm determined to fit in some lifting in the coming weeks to tone up and maintain my weight.  I'm now a full 7lbs below my pre-pregnancy weight. 

Lastly I'm so impressed with the care I receive from the the staff in the oncology office I visit.  The receptionist knows me by name, she is always pleasant, the woman who sets up my next appointment is also always super friendly...it makes my visits so much more pleasant.  Then there is Dr T, he's amazing.  I've seen doctors in the past who seemed to hardly know my name let alone be able to reference multiple appointments of data off the top of their heads.  He knows all my stats, he knows that I have Liam and that Liam is my first child.  He asks about my holidays, about Liam and how I'm feeling (beyond the physical), he doesn't do this to make small talk but because he seems to genuinely care....this makes all the difference in the world.  I feel cared for, genuinely cared for, safe in the care of Dr T.  It's so nice to have a doctor I trust and who makes me feel like a person and not a paycheck.  However I really look forward to the day when I don't have to see him so often, I pray that day is sooner rather than later.

Thank you to those of you praying for me and my little family, clearly it's working (I've always believed in the power of prayer). 

Much Love
-Jen