Friday, January 9, 2015
I Could Go On and On .... and I might
I was not going to say anything about this initially. Only a few people are currently in the know. Then I realized who am I kidding...I am a venter. I need to talk things out and just get it out of my system or say it out loud. This does not always thrill my family.
I remember coming home from school or work when I lived at home and I would rant and rave about whatever was bothering me for at least 15 minutes and then I was fine, over it and could go on about my day. I still do this... although I turn to writing more than speaking. So bear with me while I rant.
I remember the phone call from the first specialist when they said that they though D had Crohn's.... I had just gotten to the grocery store and was getting out of the car when the phone rang. The doctor said, "it looks like the early stages of Crohn's disease." The news crushed me and I slid to the ground where I just sat until a friend happened along and helped me up {Thanks Jessica!} Then I had to get up and pretend like that phone call hadn't just happened because I had kids to pick up and an afternoon to get through before my husband would be home. Being upset would have to wait.
Of course I cried later.... I cried because I knew all the horrible things this meant. I knew because I watched Crohn's kill my mom bit by bit. I have another family member with it & I have watched it re-arrange and scramble their life. I knew the hard road that was ahead... and for an 8yr old to have to travel it just seemed beyond cruel.
But maybe, just maybe this doctor was wrong.... so we found another doctor who within 15 minutes of talking to us and examining D said, yep Crohn's. He wanted to do another colonoscopy to verify.
When discussing the results of the colonoscopy with us I cried again... there was no pretending that there was another possibility anymore. To have to explain to Dylan why he was sick and what his future involved was so hard. It is heartbreaking to take him to have his blood drawn constantly, to hold him down while they start his IV each month, to explain that yes he has to take all this medicine and while it makes him temporarily feel better he is not better yet... nor will he ever really be all the way better. Dealing with this disease is his life now. Crohn's never goes away & you deal with it daily.
Fast forward 5 months. I wake up one morning in extreme pain and drive myself to the ER. I suspected a kidney stone or wonky appendix and my 4am web md search seemed to support this.
A cat scan, massive amounts of blood work, X-rays, colonoscopy and 6 days later I had a diagnosis as well. Crohn's.
When they first told me in the hospital that it was a possibility I laughed out loud because the possibility of it seems so absurd to me. It was my worst nightmare coming true again.
I said, "No I have an appendicitis and you are going to take that out and I will go home." Then they laughed.
So once again life has changed greatly..... today I started IV infusion treatment. Soon D and I will go together to get it done. My sister said "Wow you are taking helicopter parenting to a whole new level" when I told her of my diagnosis. That was hilarious....it still is. We are on heavy duty meds. I pray that this works for us.... that it gets us into remission with little to no scary side effects.
The new normal is hard for me to accept. It seems like so much to take on and yet here we are and making the best of it. I run the gambit of emotions.... angry, sad, resolved, determined and more.
I realize that medicine has advanced a great deal since the days of my mothers diagnosis.... I know that no 2 cases of Crohn's are alike which is both a blessing and curse. I know that we will get through this and be okay. I know that there are people going through things that are far worse.
I also know that I would really really love to have rocky road ice cream again but I can't. So thank you for listening to me vent, for all the prayers that have been said and help given to our family. We are truly grateful for it all.
Tuesday, December 9, 2014
And Down the Rabbit Hole We Went
Alright .... I don't intentionally go months and months without posting .... I have all kinds of plans each day and life tends to show me that it has other plans for me. But here I am carving out a few minutes to update the blog and hoping that I can string together some coherent sentences since it has been so long since I wrote.
So last time I wrote we were living here:
(How incredible is it that I lived in a place that a giant crown in the middle of town... it seems so appropriate as I am sure I am long lost royalty ... anyway)
Sadly we had to leave there unexpectedly.
One of the boys got really sick while we were across the pond and we spent over a year trying to find the answer all the while we were watching him deteriorate day by day. It was extremely difficult... we looked at many options and in the end we decided it was best that we left there as a family rather than split up for a large amount of time. We applied for a transfer and once we were notified that it was approved and where we were going we were gone in less than 30 days. Sometime called a turn and burn. It was insanity to leave that quick.
While Yorkshire will always have a giant chunk of our hearts this helped:
One of the boys got really sick while we were across the pond and we spent over a year trying to find the answer all the while we were watching him deteriorate day by day. It was extremely difficult... we looked at many options and in the end we decided it was best that we left there as a family rather than split up for a large amount of time. We applied for a transfer and once we were notified that it was approved and where we were going we were gone in less than 30 days. Sometime called a turn and burn. It was insanity to leave that quick.
While Yorkshire will always have a giant chunk of our hearts this helped:
We went from cold rainy, dreary weather to HOT. One of our first stops was Old Navy to essentially buy new wardrobes for everyone because long sleeves and wellies were not going to cut it. Thank goodness for the pool at the apartment or else we might not have survived June and July.
We searched and searched for a house. Searched some more and were just about at our wits end and we stumbled into a great home and a great neighborhood. Pictures to come later on that. Still painting and hanging pictures and sadly unpacking a few remaining boxes.
After debating home schooling versus enrolling we decided to enroll the boys at a fantastic school. I was incredibly nervous but all three boys have amazing teachers & they have settled in nicely.... although the older two are NOT fans of the uniform. In fact one day the boys were able to catch a ride in this at school. Not too shabby huh?
My time has been primarily spent at the hospital or clinic. We were blessed to find a local pediatric GI specialist who quickly gave us a diagnosis and started a treatment plan. Unfortunately after being basically untreated (despite our best efforts) for some time, D's illness had progressed to the point where the typical beginning meds were not going to cut it and we had to jump to the much more aggressive ones. The catch being that there is a possible side effect of getting cancer.... so left untreated he would die, and treated there is a chance we opened the door to cancer.
After the first infusion there was almost a night and day difference.... come what may this is the best course of action for him now and it is making a big difference so we will continue on this path for the time being.
So long story short it has been a crazy 7 1/2 months. As much chaos and heart ache we have endured we also have had so much laughter and joy in visiting family and friends. We are settling into life here & it is a good place for us. I was NOT happy about our destination but life is what you make it & I think we are making the best of it and it is pretty good :)
More to come later y'all.
Thursday, March 20, 2014
Many things in life baffle me.... generally what baffles me involves my children.
Here is a list of things that I thought my kids would have down by now.... I have been surprised & baffled by these things for awhile now.
1) Putting the lid back on the toothpaste
2) Rinsing out the sink
3) Flushing..... if nothing else how does your own gag reflex not prompt you?
4) The lack of aim in the loo.... it is astounding to me how many times and how much they miss...
5) Our inability to get out of the door in a quick manner
6) How the genuinely seem stumped as to what they need to do to get ready for school each and every day
7) How going to the grocery store involves at least one battle....
Now having ranting about all that here is what else just blows me away about my kids:
1) How amazing of a builder G is.... his mind just creates the coolest things.
2) How generous D is .... he is always so happy to help and to share
3) How funny B is... he can always make me laugh
4) How much just a smile from them can totally alter my life
5) How sweet and rowdy they can be at nearly the same time
6) How much they will defend and help one another
7) How they love to read and imagine and act things out .....
There are days where I am baffled for sure... and days of sighs and frustrations but I would not trade any of them or any of it for a second because what is always there is LOVE.
Here is a list of things that I thought my kids would have down by now.... I have been surprised & baffled by these things for awhile now.
1) Putting the lid back on the toothpaste
2) Rinsing out the sink
3) Flushing..... if nothing else how does your own gag reflex not prompt you?
4) The lack of aim in the loo.... it is astounding to me how many times and how much they miss...
5) Our inability to get out of the door in a quick manner
6) How the genuinely seem stumped as to what they need to do to get ready for school each and every day
7) How going to the grocery store involves at least one battle....
Now having ranting about all that here is what else just blows me away about my kids:
1) How amazing of a builder G is.... his mind just creates the coolest things.
2) How generous D is .... he is always so happy to help and to share
3) How funny B is... he can always make me laugh
4) How much just a smile from them can totally alter my life
5) How sweet and rowdy they can be at nearly the same time
6) How much they will defend and help one another
7) How they love to read and imagine and act things out .....
There are days where I am baffled for sure... and days of sighs and frustrations but I would not trade any of them or any of it for a second because what is always there is LOVE.
Wednesday, February 27, 2013
Hodge Podge and Jewelry
Life has been so full of life that I have not been blogging in some time ...I am grateful to Joyce though who takes most of the work out of it for me when I decide to hop back into it at least on Wednesdays :) Visit her if you don't already over at From This Side of the Pond. She is a faithful and talented blogger!
Hop over and join in or just read her answers as well as others and don't forget to check out the Gilt Shop on Facebook - you won't regret it !!
1. When were you last facing an ocean? Using just ONE word, describe how you felt as you faced that ocean.
I last faced the ocean .... last summer. Calm is how I felt facing it.
2. What are three sounds you hate to hear?
The panic/pain cry of any of my kids, the phone ringing in the middle of the night & screeching.
3. This question comes to you courtesy of some real life friends. Hi real life friends! When you shop for yourself, do you try everything on in the store before buying or do you buy, try on at home, and then return what you don't like or what doesn't fit?
Try on in the store. If it makes to my house it may never leave.
4. February 26th is National Pistachio Day...are you a fan of the little green nut? Do you use them in cooking and baking or prefer to eat them right out of the shell?
Not a pistachio fan sorry!
5. When did you last have to compromise with someone? Were you happy to reach the compromise or slightly irritated it was necessary?
I would say I am in the midst of a few compromises and it is never easy ... it is irritating because you both feel right & there is no one to really please anyone.
6. Have you ever written a letter to an elected official? Did you get a response?
I am sure in my youth or Girl Scouts days I did but nothing pops into my mind. We did use to receive Christmas Cards from the White House years ago when my mom was heavily involved in politics.
7. We 'March' into a new month at the end of this week...what's something on your March calendar guaranteed to make you smile?
Guaranteed to make me smile ... hmm... the promise of warmer weather :)
8. Insert your own random thought here.
I have an extremely talented friend who is launching a jewelry business. She makes incredible pieces and well as scours the world to find unique pieces at a steal. She is having a sale today that starts at noon EST and you want to check it out!
I will be interviewing her soon so check back to see pictures of some of her amazing items!
Find her on Facebook and be ready to be wowed! Here is one of her hand crafted designs that she is featuring today. I have seen it in person and it is wonderful! I will soon be wearing one - will you grab one ?
Tuesday, February 19, 2013
Hodge Podge
Apparently I posted the questions rather than saving them last week and never answered them ... so I will right now since I am on here :) Who knows when that will happen again and better later than never I guess right?
1. When were you last 'on a mountaintop'? You may answer in the literal or figurative sense.
Hmm... it has been too long since I was literally on a mountain top ... figurative sense... not sure...
2. Do you establish and maintain a strict budget in your household? What is one piece of financial advice you would offer someone just starting out on their own?
We are in the process of revamping our budget... tough but so important.
3. Cherries-yay or nay? Cherry pie, cherry cola, black forest cake, or a scoop ofBen and Jerry's Cherries Garcia...pick one.
Ben & Jerry's Cherry Garcia is sooooo good!
4. Should you ever discuss religion or politics with people you don't know?
It can get dicey... I try to avoid it. Or maybe better if you don't know them so if you both get angry you don't have to deal with each other later :)
5. When you take a road trip do you prefer to be the driver or the passenger? Where were you headed on your last road trip?
Passenger that is asleep ....
6. If we peeked inside your closet, what color would we say is most prevalent?
gray and black
7. Who's your favorite senior citizen and why are they special?
My favorite senior citizen is my Dad ... he deserves a whole post about all the reasons he is so special so I will have to revisit this :)
8. Insert your own random thought here.
It is a beautiful day today which I am grateful for and I am off to enjoy it !
1. When were you last 'on a mountaintop'? You may answer in the literal or figurative sense.
Hmm... it has been too long since I was literally on a mountain top ... figurative sense... not sure...
2. Do you establish and maintain a strict budget in your household? What is one piece of financial advice you would offer someone just starting out on their own?
We are in the process of revamping our budget... tough but so important.
3. Cherries-yay or nay? Cherry pie, cherry cola, black forest cake, or a scoop ofBen and Jerry's Cherries Garcia...pick one.
Ben & Jerry's Cherry Garcia is sooooo good!
4. Should you ever discuss religion or politics with people you don't know?
It can get dicey... I try to avoid it. Or maybe better if you don't know them so if you both get angry you don't have to deal with each other later :)
5. When you take a road trip do you prefer to be the driver or the passenger? Where were you headed on your last road trip?
Passenger that is asleep ....
6. If we peeked inside your closet, what color would we say is most prevalent?
gray and black
7. Who's your favorite senior citizen and why are they special?
My favorite senior citizen is my Dad ... he deserves a whole post about all the reasons he is so special so I will have to revisit this :)
8. Insert your own random thought here.
It is a beautiful day today which I am grateful for and I am off to enjoy it !
Monday, January 21, 2013
TMI
Is there such a thing as TMI (too much information) among friends? Strangers? Does it depend on the content or if you have the possibility of a similar event? I wonder....
I am a pretty open book which can be good and not so good. I feel that with my inner circle I can pretty much share everything and do but I think there are times when we should NOT share everything.... I am pretty willing to hear whatever as well.
The way I look at it is I am older and have seen and heard a lot already. I have three children, a husband and a dog that are all male so I subjected to gross and funny things daily. Not much gets to me these days.
I was thinking about this because I have wanted to post a sign in my bathroom for awhile.... it would say:
But two out of three of my kids don't read so I feel like my wit is wasted so I posted it on facebook and I thought hmm.... should I have... then I thought why not... then I thought I know that will come back to haunt me... then I thought oh well.
I was not telling a poop story per say.... although I have to my friends with kids. But it just got me to thinking... what is TMI to you?
I am a pretty open book which can be good and not so good. I feel that with my inner circle I can pretty much share everything and do but I think there are times when we should NOT share everything.... I am pretty willing to hear whatever as well.
The way I look at it is I am older and have seen and heard a lot already. I have three children, a husband and a dog that are all male so I subjected to gross and funny things daily. Not much gets to me these days.
I was thinking about this because I have wanted to post a sign in my bathroom for awhile.... it would say:
When you go number two, you know what to do
Pick up the brush and scrub away your poo
Because I don't want to look at it when I come back through!
But two out of three of my kids don't read so I feel like my wit is wasted so I posted it on facebook and I thought hmm.... should I have... then I thought why not... then I thought I know that will come back to haunt me... then I thought oh well.
I was not telling a poop story per say.... although I have to my friends with kids. But it just got me to thinking... what is TMI to you?
Wednesday, January 2, 2013
Ringing in the New Year with Hodge Podge
Welcome to the first Hodge Podge of 2013. It does not seem possible that today is the second of January yet here we are. On to the questions provided by the fabulous Joyce who blogs at
From This Side of the Pond. If you have not checked out her blog yet, go do it!
1. How did you ring in the new year?
We rang in the New Year by playing laser tag, mini golf and having lunch with friends. Later on we went over to their house and met up with some other friends where we ate, played board games and laughed and laughed while all the kids played. It was fun and nice to not be in giant crowds.
2. What is one thing you are looking forward to in 2013?
I look forward to many things in this next year but one of the things I am anticipating most is all the visits from friends & family planned for this spring/summer.
3. Steven Spielberg is quoted as saying, 'All of us every single year, we're a different person. I don't think we're the same person all our lives.' What say you?
I would say he is right... atleast partially. I think essentially we are the same but we do change and grow. I am much more mellow then I was 10 years ago, more confident and more patient.
4. The Pantone color of the year for 2013 is emerald green. Like or dislike? Do you already own something this color? Will you add something in this shade to your home or wardrobe in 2013?
I have always been a fan of emerald green and I do have a few shirts and sweaters in that color. I had just tried to purchase a new coat from Old Navy in that color but they were sold out in my size :(
5. Speaking of emerald...what's your favorite gemstone?
I am a fan of every gemstone but my heart belongs to diamonds.
6. Share a favorite book or movie from 2012.
I am not great at narrowing down a favorite but the two that popped into my head when I read this was Pitch Perfect and Dark Shadows. I love the cheesy off beat humor of Dark Shadows and Pitch Perfect is just fun & has some great lines. Rebel Wilson I think is the name of the girl who plays Fat Amy and she is hilarious!
7. What is something you want to tell yourself at the start of this brand new year?
To relax and not be so hard on myself.... it will all be fine.
8. Insert your own random thought here.
May 2013 bring you loads of joy and laughter. May you find peace no matter the circumstances you find yourself in... may you grow closer to your family, your friends and God. May you be healthy & strive to be healthy so you can enjoy time to the fullest.
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