The Honeymoon Is Over

“The Honeymoon Period.”

Sounds like a good thing, right? Who doesn’t love a honeymoon? Me, that ‘s who. I assure you this is not the “take romantic walks on the beach” kind of honeymoon.

Let me give you a little background. (Remember, I am not a doctor, even though my initials are DR).

So, your body has decided that it is going to now attack the islet cells on your pancreas that produce insulin, thus rendering you diabetic. But your body doesn’t go out in one day and kill all of the cells. It starts attacking them and they systematically die off. When enough of them have been destroyed, the glucose is no longer being carried out of the bloodstream and into the cells to be used for energy, so you gradually start showing symptoms. Everyday, more islet cells are destroyed. Eventually, the insulin that is still working is over-worked and decides to go on strike. It can’t keep up, so it stops working. So one day your islet cells are producing insulin, and seemingly the next day (it doesn’t really happen that quickly), many of the cells are killed and the ones that aren’t killed, are refusing to work.  So boom! Virtually no insulin working in your body and you get really sick, really fast (DKA).

Not every person who is diagnosed with type 1 diabetes goes into DKA. In fact, Medium was one of those who didn’t. I like to think it was because of my keen awareness and attention to detail that I was able to identify his symptoms fairly early on, but who really knows. Nonetheless, the staff in the ER kept commenting on how kids usually are so much sicker than Medium when they come in. It was almost as if it wasn’t really happening because there didn’t really seem to be a real emergency, even though his blood glucose level was 565 mg/dL. (A healthy blood sugar level is between 70 mg/dL and 140 mg/dL). Everyone was very chill, everyone except Medium’s pediatrician whom I am sure was still sitting back at his office with his mouth agape. (He too didn’t think Medium looked sick and was quite shocked at the results in the office). As a former ER worker, I almost felt like I needed to apologize for disappointing them with our drama-free presentation!

But I digress.

Back to the honeymoon.

So, you’ve now been diagnosed with type 1 diabetes. (We aren’t even going to go into how sucky that is in and of itself, you’ve heard enough of those rants from me). And the treatment (not cure) for this diagnosis is insulin. So you start giving yourself synthetic insulin via injections into the subcutaneous tissue of your arm, thigh, belly or buttock and now your body has what it needs to carry the glucose, that comes from the foods you eat, out of your bloodstream and into your cells to be used for energy. Yay. (Please notice the purposeful exclusion of an exclamation point here. While all diabetics and their caregivers are ever-so-grateful for the invention of synthetic insulin, it is not a cure. So, until there is a cure, you get no exclamation point. Sorry.)

But guess what? Remember that insulin that your own body was still producing but had gone on strike? Well, it has accepted the terms of the negotiated settlement and has now agreed to start working again, now that it has the help of the synthetic insulin. So, you have synthetic insulin and your own insulin, and guess what? Now you have too much insulin. And guess what? Too much insulin will kill you. Yeah, this would explain my love-hate relationship with insulin. The very thing that my son needs to stay alive, can also kill him. Super.

This period of time right after diagnosis when your body’s own insulin starts working again, is called the Honeymoon Period.  (Hmmm, seems I could have gotten to this point faster, oh well.) The problem with the honeymoon period is that you don’t know when your body is going to kick out some insulin and how much it is going to kick out, so you are on the blood sugar roller coaster. Never really knowing how much synthetic insulin to give yourself. You do your best to come up with an insulin to carbohydrate ratio, but the hard truth is that, sometimes, you get it wrong.

While there is currently research being done on preserving those islet cells in those newly diagnosed with T1D, the outcome remains the same. Eventually all of those cells are going to be destroyed. So I have been saying all along, “just die already islet cells!” That way we don’t have to guess anymore how much insulin Medium really has working for him.

Well friends, I think the honeymoon is over. His blood sugars have gone up across the board. And I thought I would be relieved when this finally happened, but I am surprisingly saddened by it. I guess it just puts the proverbial nail in the proverbial coffin. The death of his pancreas.

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Did I Ever Tell You You’re My Hero?

Today’s theme: Diabetes Hero

“Let’s end our week on a high note and blog about our “Diabetes Hero”. It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3. It might be a fabulous endo or CDE. It could be a d-celebrity or role-model. It could be another DOC member. It’s up to you – who is your Diabetes Hero??”

All of the above.

Really.

I am almost 4 months into my journey as a mother of a child with diabetes, and I can ‘t believe how many amazing new people I now know because of it. (And some people for whom I have known a long time but now have a new-found respect).

We have an AMAZING diabetes educator. I wish I could just keep him in my pocket and reference his brain whenever I need to. Medium’s pediatrician and endo are awesome too. All of the staff at Children’s Mercy Hospital are at the top of their game.

Medium’s school nurse has gone above and beyond in making me feel at ease while he is at school all day long.  His teacher, the principal, all the school staff have rocked.

A woman, whom I had not met in person until today actually, hooked us up with a scholarship for Medium to go to diabetes camp this summer. How awesome is that?

The women of the DOC that I have met this week alone through Diabetes Blog Week have been nothing short of inspirational. And not just the one’s who have multiple children with T1D and husbands with cancer and other children with horrible diseases besides T1D, all of the women who are brave enough to put their inner-most thoughts and feelings; the good, the bad and the ugly, out there for the whole world to see and learn from.

My sister-in-law who, although she has lived with this disease for close to 40 years, doesn’t let diabetes define her. I have known her for twenty years and only in the last 4 months have I realized what all she has had to endure. And things are so much easier now! Even though my own sister-in-law has T1D, I never knew how serious or complicated it was because she made it look easy. It is a part of who she is, it is not her identity. She is a very creative, artistic person and is a great writer. She has always worked in publishing, and now she works for the ADA. She is a huge advocate for diabetes and is an amazing role model to Medium of what it looks like to live with type 1 diabetes. (Plus she doesn’t make me feel bad that I don’t change the lancet on the poker as often as I should!)

My mother-in-law, who went through everything that I am going through, 40 years ago when they used pig insulin and didn’t have glucometers, and didn’t even know what a healthy blood sugar was. I know that if she was able to raise my sister-in-law to be the smart, creative, kind, successful person that she is with virtually no tools to help her, then I can certainly do the same now with all of the advanced technology out there.

Everyone who gets up every morning and goes to work or school, who cleans their house and does laundry, takes care of their kids, runs corporations, plays professional sports, contributes to society and doesn’t let this disease tell them they can’t.

But most of all, my Medium. He does not complain. He does not ask why. He counts his carbs. He gave himself shots. He sticks a needle in his finger 10 times a day without so much as a whimper. He knows how to navigate his insulin pump. He gets A’s in school. He plays soccer. He plays basketball. He plays football. He loves his dog. He tolerates his brothers. He hates taking showers. He loves peanut butter crackers. He gives the best hugs. He is 10 years-old and is scared about what diabetes is going to do to his life.

But you wouldn’t know it.

He is my true hero.

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You Look Marvelous, Simply Marvelous!

Today’s theme: Saturday Snapshots

“Back for the third year, let’s show everyone what life with diabetes looks like! Let’s grab our cameras again and share some more d-related pictures. Post as many or as few as you’d like. Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.”

Medium on his first day of school this year. Pre-diabetes.

Medium in the ER the day he was diagnosed.

Large and Medium playing Xbox in the hospital

Our new reality

The highs of diabetes

And the lows

Diabetes hasn’t slowed Medium down a bit!

Looking all cute with his faux hawk

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He Ain’t Heavy, He’s My Son

Today’s theme: What They Should Know

“What is one thing you would tell someone that doesn’t have diabetes about living with diabetes? Let’s do a little advocating and post what we wish people knew about diabetes. Have more than one thing you wish people knew? Go ahead and tell us everything.”

Once again, my new friend, Meri, hit the nail on the head with this one. She actually wrote the post 2 years ago, but it does a phenomenal job of giving you just a peek at what a day in the life of a diabetic is. I encourage you to read it here.  Our Diabetic Life

But re-posting all of Meri’s posts kind of defeats the purpose of having my own blog, even though somehow she has all of my thoughts in her swelly brain. So I shall come up with my own version of basically the same concept.

“He ain’t heavy, Father…he’s my brother.”

This is the motto for Boys Town, a community formed in 1917 by a Catholic priest named Father Edward Flanagan. It is located in Omaha, Nebraska, where I grew up. Basically, it is the only incorporated village in the nation created exclusively for children in need of a fresh start in life.  It is a very cool place. But I have always loved this statue and the meaning behind it. It speaks to the very core of basic humanity. It doesn’t matter how hard it is, it needs to be done and, therefore, I will find a way to do it. (Kind of the deeper, more eloquent predecessor to Nike’s slogan, “Just Do It”, which is also one of my favorites).  Maybe growing up driving by that statue is why these feelings are ingrained in me.

But that is why I do what I do in regards to Medium’s diabetes. It sucks. And it’s hard. And it’s complicated. And it is exhausting. And if it doesn’t look like that to you, that is because we are KICKING ASS at managing his horrible disease. And it is manageable. But if we don’t manage it, for even a minute, he could die.

HE COULD DIE.

So, yes, when you see me at work, or up at one of the boys’ schools or activities, or wherever you see me, and it looks like everything is just hunky dory, that is because we are not going to stop living our lives and dwell on this. We are not going to walk around with our heads down and the letter D sewn into our chests.

But just because we are happy and smiling and seem to just check a blood sugar and punch a few buttons into a pump, doesn’t mean that diabetes isn’t a horrible, complicated, deadly disease with no cure.

Just know that behind the scenes we are working very hard to hit a moving target. (Again, please read Meri’s post, it really puts it in perspective. Here it is again so you don’ t even have to scroll back up to click the link!  Our Diabetic Life).

The one thing I want you to know about diabetes, is that I do what it takes, because he is my son.

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I Have A Dream…

Today’s theme: Fantasy Diabetes Device

“Tell us what your Fantasy Diabetes Device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc. The sky is the limit – what would you love to see?”

This one is kind of hard for me. We have only been playing this game for such a short time that I have been too busy learning about the reality of diabetes to start fantasizing about what could be.  At this point, the only fantasy I have is for a cure for this stupid disease.

But, this theme challenged me to think and get creative, and I like that.

But then I remembered that in one of my first posts on my blog I mentioned that they have a continuous glucose monitor for the D-kids and that they needed a continuous worry monitor for us D-moms.  So see, I was way ahead of my time.

But I would take it a step further. Someone needs to invent a continuous worry monitor and then a Xanax pump to go with it. Really it doesn’t have to be Xanax, it could be whatever your anti-anxiety medication is, vodka, chocolate, whatever!  And it would be all inclusive in one nice, sleek little device that would hold your debit card and lip gloss, too! As your number goes up on the CWM, the Xanax pump automatically dispenses an appropriate amount of medication. Voila! An always happy D-Mama! Who wouldn’t love that???

I know my husband would!

Ahhhh…..a girl can dream.

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I Am Kicking Ass Over Here!

Today’s theme: One Thing To Improve

“Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at. Today let’s look at the flip-side. We probably all have one thing we could try to do better. Why not make today the day we start working on it. No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!”

This week has been so busy with school year-end activities: field trips, awards ceremonies, concerts and the ever-so-prestigious-and-totally-necessary (enter eye-roll) Pre-School graduation (hey, I am all for celebrating my kids and their accomplishments, this is just one that I think is a little silly and self-indulging, but what the hell….) that I have not been able to get my posts for D-Blog Week up until almost 11 p.m. We were done with all activities by 7:00 tonight so I thought I would be able to post sooner but alas, here I am, the late night poster again. But the reason for my tardy post is a good one. I have been overwhelmed with the amazing and totally supportive comments from all of my new friends! Just think, on Monday, no D-friends. Two days later, so many I have lost count! What an amazing community that is the DOC! Someone said it is the greatest club you never wanted to be a part of! Ain’t that the truth! I have never been so easily accepted into a group before. If you have or care for someone who has diabetes, then you are in, and in with love! Simply amazing!

Well, after all that sticky-sweet (pun intended) talk, it’s time to trash myself. I told you yesterday that I am much more comfortable at finding my faults. Actually I don’t have to find them at all, rather I try to hide them. Sigh.

So grab yourself a cup of coffee, (or vodka, I don’t judge) and pull up a comfy chair because here goes….

I need to be a better, wife, mom, sister and daughter. My family bears the brunt of most of my flaws.

I need to eat better, exercise and loose weight.

I need to stop buying bags and purses.

I am addicted to McDonald’s fountain diet Coke.

Oh wait, this is supposed to be something I could improve on related to my son’s diabetes…..sorry, I am so well aware of my flaws that they just roll off the tongue!

Hmmmm…….let’s see….something to improve on….um….well, there is….no. Well, what about….huh, no. Okay, okay how about…. hmmm……well this is awkward. I can’t really think of anything. It’s ironic. I am keenly aware of all of my personal faults, but when it comes to Medium’s diabetes, I AM ALL OVER THIS SHIT!!! Don’t get me wrong, I make mistakes, there are too many moving parts of diabetes care for even the long-time veterans to not make a mistake now again, but for a rookie such as myself, I pretty much ROCK! (Anyone else find it interesting that in the post where I was supposed to praise myself, I could barely do it, but here where I am supposed to call myself out on something I am calling myself a ROCK STAR?) But seriously, a carbohydrate doesn’t enter Medium’s body without me knowing about it, we have test strips, glucose tabs and snacks with us at all times, we have glucometers and cake gel in every level of our house and in both cars, I download Medium’s pump and pour over his numbers every 3-4 days, I buy home A1c kits so I won’t have to wait 3 months to know how he is really doing, I talk to the school nurse daily. Actually at Medium’s three month check up the other day the diabetes educator was almost irritated that I already knew everything he was going to tell us after downloading the pump; when Medium tended to be high, how close his CGM was to his meter BG’s, what his A1c was.  I am telling you, I AM KICKING ASS over here!

But it is exhausting, draining, paralyzing and all-consuming and my personal health and relationships are suffering because of it. I need to learn how to let up a little bit. I need to understand that I can’t be in control of this horrid disease at all times. I need to remember that I have two other kids who need me, too. I need to praise Medium more often for being such an easy diabetic kid to take care of. I need to remember to breathe.

Huh, look at that, I do have some things I could work on!

(You didn’t really think I was that conceited, did you?)

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A Shout Out To Myself

Today’s theme: One Great Thing

“Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”. But today it’s time to give ourselves some much deserved credit. Tell us about just one diabetes thing you (or your loved one) does spectacularly! Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes. Nothing is too big or too small to celebrate doing well!”

So you can see from the description that I am supposed to sing my own praises. I like to sing other people’s praises. I find self-deprecating behavior so much easier. I am my own worst critic. So I will start this post by singing others’ praises and we’ll see if I get around to the “tooting my own horn” part.

I was so excited to be a part of Diabetes Blog Week. I have only found a few other D-blogs even though I knew there were others out there. I just haven’t had time to find them. Being a D-mom can be lonely. You feel isolated. You feel like no one really knows what you go through on a daily, no make that hourly, basis. And if you do it well, make it look too easy, others really don’t know what you go through. So I couldn’t wait to find other D-moms to commiserate, and at times, celebrate with.

WOW.

I was overwhelmed today.

Around mid-morning at work I decided to check my personal email. Sometimes Medium’s school nurse emails me with questions or just FYI’s so I like to check it every so often. I couldn’t believe my eyes….several comments from other D-bloggers! I have had more hits today than ever before, I even had someone from Pakistan visit my blog! I’m international! And even though I started this blog for myself and to vent my feelings for myself, I have to admit, it is exciting and rewarding to know that others are reading and may be inspired, entertained, (or infuriated, as the case may be) by my words. And I have over a hundred new blogs to work my way through now! I can’t wait!

And here is the mouth-gaping-open thing I have learned about the DOC (diabetes online community). Even though yesterday none of these people knew me or knew of me or knew anything about me, today we are connected in a way that I can only share with them. It’s like when your child (or yourself) is first diagnosed with type 1 diabetes. One day you know nothing about the disease and, quite literally, the next day you could teach a class on the relationship between blood sugar, carbohydrates and insulin. Diabetes puts you on the fast track, both in education about the disease and anatomy and physiology of the human body. But it turns out it puts you on the fast track to immediate, deep friendships, too. And that part is amazing. Those blogs that I mentioned yesterday that I was in awe of, somehow each one of them found out that I mentioned them and each one of them messaged me with the most sincere words of praise, understanding and encouragement. I so wasn’t expecting it, and I actually started crying, right there at work in my chair with my coworkers looking at me like I was nuts (they do that a lot though 🙂 )

Imagine that feeling when you’ve been stranded, alone, on a desolate island and you realize that you are being rescued. That is how I felt. Those comments from those D-Moms (and others too!) were my life raft. I know it’s just a dinghy in the vast ocean that is diabetes, but I know now that I am drifting back towards civilization and these other moms are going to be my survival fuel. So a huge THANK YOU to them!  (And a special shout out to Laura of Houston We Have A Problem, for telling me how to add the banner!) I know I am going to learn so much from these women (and some men, too!) about things diabetic and not, and I am so re-energized by this. (The first piece of advice from someone will probably be to shorten my posts. I am well aware that they tend to be a little long in the tooth, but if you knew me, you would know that this is who I am. I am cognizant of it and will try my best to have relevant, educational, entertaining, passionate, SHORT posts whenever possible–but don’t hold your breath, I got shit to say! 🙂 )

So I promised to try and pimp myself out a bit, so here goes.

I am a great FAKE nurse.

I have a Bachelor’s degree (not in nursing) and worked a fancy corporate job back in the day, but quickly ditched the pantyhose (yes, we still wore pantyhose in those days) for poopy diapers when Large was born. By the time Medium came around 2 years later, I was desperate to use my brain for something other than nap time nursery rhymes and stimulating toddler talk. So I got a job as a Unit Secretary in an Emergency Room. I. LOVED. IT. I got to be near the action, but no one was going to die if I didn’t fax the correct piece of paper. I worked there for 9 years until a year ago when I went to work in the IT department for the same health system (it was time to start making a little more money for my time). I sat next to the ER doctors and nurses for 12 hours at a time learning from them. That has proven to be great training for being a D-mom.

So I do a pretty good job at all the nursey stuff that comes with having a D-kid (and there is a lot of it!) And while my time in the ER has given me more medical knowledge and experience than the average bear, I, in no way, compare to the true greatness that is a REAL nurse!

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I Have No Friends

So I am super excited to be participating in Diabetes Blog Week!  It makes me feel all official and professional and everything. It’s a place for all of us diabetes bloggers to gather and share information on the same topics and learn from each other. I so love the very few D-blogs that I have found so far and I am so excited to find and read more!

So, there is a cool banner and button to help display and promote Diabetes Blog Week, but I can’t figure out how to use them. As it is, it is 10:00 p.m. and I just got home about 30 minutes ago since leaving the house at 8:00 a.m. Today is the first day of Diabetes Blog Week and I am almost late in getting my first entry in, I don’t have time to figure out how to use the banner and button. And here is the real scary part,  (I work in IT….shhhhhhh…….please don’t tell anyone what a fraud I am!  Really, I just don’t have time right now to figure it out, if I had more time, I could figure it out…..I’m sure……)

Today’s theme is “Find A Friend:

“It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends. With that in mind, let’s kick off Diabetes Blog Week by making some new connections. Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!! Let’s all find a new friend today! “

As if not being able to figure out to “grab” the banner and button didn’t make me feel stupid enough, I can’t even find any diabetes friends.  I mean, any new ones that you all wouldn’t know. I have found the “Big Guns”, D-Mom Blog, Our Diabetic Life, Candy Hearts, and Houston We Have A Problem but those gals are like legends in the DOC! (Diabetic online community–I learned that just the other day….).  Just look at their blogs, they are beautiful. I look at those blogs and all those feelings of inadequacy and self-loathing from junior high come rushing back. I want to be like them. Instead I have a very elementary looking blog layout and can’t figure out how to grab buttons (I hate that they use the word “grab” as if to imply how easy it is to just, grab, it and throw it on your blog…..pouring salt, twisting knife).

But I have 3 kids and a full-time job outside of the home and I have only been blogging for a little over 2 months (my 10 year-old was diagnosed with T1D about 3 months ago) so I don’t have anyone new for you to read. I guess that new blog is ME! I am my own new friend!  And admittedly, I started blogging for me and only me. I have always been a person who expresses herself best with the written word, so it is my therapy to blog it out. I really didn’t care if anyone read it. But then a few people did read it, and they gave me feedback and all of the sudden I wasn’t just writing for myself anymore. I am writing for an audience and I just want to keep my audience happy. I guess in the end, if my simple, button-less blog layout turns everyone off and no one is reading it anymore it doesn’t matter, because I was just writing for myself anyway. And the last time I checked, I can’t un-friend myself.

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Happy Mother’s Day

Medium had his 3 month endocrine appointment the other day.  We got an A+ from our diabetes educator.  He liked our numbers  and what we were doing with adjustments and such. His A1C was 6.5–at diagnosis it was 11.4–a “normal” A1c is between 4-6, they don’t actually want it much lower than 6.5 because that probably means that we are having too many lows. So we are doing great! I say we as if I am the one with diabetes, but diabetes is a team sport. And I am the captain. Both the diabetes educator and the endocrinologist asked Medium if he had any questions or concerns.  They asked how he was doing with diabetes and if having diabetes was miserable or if it was ok.  He looked at them like they were speaking Japanese. He has taken all of this very well and is relatively unbothered by it…..for the most part.  There are times when he is frustrated, like yesterday when all the siblings of Small’s baseball team got to have the extra juice boxes and he couldn’t have one. Or when everybody wants to go to Sonic after a game and he can’t have a slushie. But he gets over it almost immediately. One of the best things about Medium actually is that he has virtually no short-term memory, he gets mad about something (REALLY mad sometimes) and then poof, he’s moved on.

I’d like to think that part of why Medium seems unaffected by diabetes is because I am doing such a good job of keeping his sugars in tight control and making sure he is leading as close to the same life as he was pre-diagnosis, as possible. But it probably is really because he just goes with the flow. That part of him has me in awe. I wish I could be more like that.

In any event, he is doing well.  We are kicking some diabetic ass over here! It’s hard work, but so worth it. I would move heaven and earth if it meant my kids would be healthy. There is no greater Mother’s Day gift than three thriving kids!

So a happy Mother’s Day out there to all the great mom’s I know.  Especially the ones who sacrifice everyday, go above and beyond, never have time for themselves, endlessly worry about their kids’ futures and then get up the next day and do it all over again.  In short, happy Mother’s Day to every mom!

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San Diego Or Bust!

I’m not one for drama.  I never have been.  I never could deal with all that girl drama that starts as tweenagers and ends, well, never.  I love, love, love my girlfriends and can’t survive without those relationships, but they are drama-free.  I shook loose all of the jealous, catty, manipulative, self-centered, mean girls that ever entered my life and I have been left with the most amazing circle of supportive, genuine, smart, funny and down right fabulous women.  And while I haven’t seen or even talked to many of them as of late, (family crisis will do that to you), I know they are there for me and I know that they know, that even in the midst of said family crisis, I would be there for them in a New York minute if they needed me.

I got to have lunch with a couple of them yesterday. Well, ironically, we didn’t even eat. We were too busy planning our trip to San Diego for our 40th birthdays! There are 6 of us who will all turn 40 in a 3 month period and we have all been friends since college.

In some ways my life is a total mess right now. I am a thousand pounds overweight, stressed to the max and although the thought of leaving Medium for 5 days terrifies me, I am so excited for this trip! I really need it and can’t wait to spend some good, quality face time with my girls!

San Diego or bust!

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