Category Archives: Uncategorized

It’s not my plan, it’s His

What I know so far from a medical standpoint is….

…. I have sacroiliitis which is inflammation of the SI joint, Sacroiliac joint dysfunction, degeneration in the SI caused from prolonged inflammation (ie sacroiliitis), bone marrow edema in my right SI, high markers of inflammation in my blood with evidence of arthritic damage in my lower back.

I know, fun huh?!?

Up until about 6 days ago, I had been dealing with, mostly nerve pain. It ranged in severity from day to day for a year in my right leg/hip. I have on and off backaches from barely noticeable to being pretty sure something is breaking in half, and my right hip aches off and on, but this was the gist of it.

Now, I avoid doctors at all cost. I always wait until it’s really bad and I can’t handle whatever it is anymore.

Either that or I get tired of hearing everyone saying, “Well, maybe you should uh, go to the doctor!”

I know it’s out of love, but for me going to the doctor is just another box I don’t want on my daily to-do list. I don’t want to have to go to the doctors. I don’t want to be that person.

I don’t want to have to take medications.

I just simply don’t want to deal with it.

A week ago, despite how badly I just want to ignore it, I finally decided to start taking control of this situation, for real this time.

I’ve been here before and that’s why I have what information I do have, but when it seems like they aren’t going to figure it out I just get overwhelmed and I give up. Aside from one steroid injection (it took months for me to agree to this one and it only worked for 3 days), anti-inflammatories which didn’t touch it (so, why bother?), and lidocaine patches, I haven’t tried anything else the doctors have discussed.

I just assumed it would eventually go away.

Anyway, I met with a primary care doctor on Tuesday who started me on a steroid taper and put in a referral to pain management and rheumatology.

This whole process is new for me and I am just going to share as it’s going down, so bear with me.

The steroids, I HATE and I’m pretty sure Dan was ready for a divorce by the end of day 3. Not that I’d blame him. I’m a natural redhead with a temper and I’m not always the easiest to deal with.

Anyway, back to the steroids. They make me incredibly irritable, shaky, nauseous, and extra sleepy. I’m on the second to last day of the taper and I wouldn’t say it helped enough to make a difference.

The pain has only gotten worse and, it’s changing (I’ll come back to this).

On Wednesday, I met with physicians assistant in the pain management department. She was nice. She handled my snot and sobbing like a pro and really seemed to hear my concerns. After discussing my options, we decided to move forward with another injection in the SI joint.

I won’t meet with rheumatology for almost two weeks.

Okay, so these changes I’m feeling…..are crazy. Well, that’s how they’re making me feel anyway.

I didn’t even discuss these with either of the doctors because it wasn’t happening yet.

It started Thursday and has just progressed.

My right hip had been burning and aching for a bit, but now it’s in both. I keep getting the sensation of being snapped with a rubber band and electrical zaps in both the left and right joints. My legs feel like I’m being poked with dry grass or porcupine quills. I get rushes of pins and needles all over my legs, feet and, as of today, my forearms too. My hips, knees, and inner and outer thighs won’t stop burning, and I have NO IDEA WHY!

I want to say I’ve been handling it like a champ but that’s not really the case. I spent most of the weekend in my head.

The same thoughts kept running through my mind on repeat.

Why is this happening to me? What am I going to do? How do I fix this? Can it be fixed?

It becomes a vicious cycle of a bunch of crap NOBODY wants to deal with, especially me.

I wasn’t surprised when I woke up physically and emotionally EXHAUSTED today, so I decided I’d try my best to have a good (mental) day!

Good mental days can take a lot of work for me. It’s difficult for me to reroute all my worry and negative thoughts into positive or thankful ones when my life seems so disheveled and scary. My anxiety takes over and I struggle to control it.

Not a lot helps me when I’ve gone far enough down the rabbit hole if you will, but this is usually what helps me if anything is going to, so I thought I’d share.

I start by thanking God for all I have, all the blessings, and beautiful people in my life.

Literally, I start listing them out loud, saying thank you for each thing that brings me any bit of joy or happiness, one at a time.

1)My husband 2) My kids 3) I get to stay home ……and so on and so forth until….

…… the darkness starts to fade and your thoughts become clearer. When things just don’t seem as heavy you know it’s working….keep going, over and over again until you can see the light.

It’s there. Just be patient.

My clearer thoughts for today: It’s not my plan, it’s His! have to be patient. have to be still.

Acts 1:7  “It is not for you to know the times or dates the Father has set by his own authority.”

As always, thanks for reading.

XOXO Cassey

 

 

One limpy-gimpy step at a time

November 2nd, 2017, today’s the day, one year since my body decided to completely lose its shit for good -I’m sorry, but stay with me.

Over the past Month or so, my life has been full of all kinds of kid/friend/school drama, doggy hot spots -HORRIBLE, FYI-, leaky sinks, sick kids, so. many. appointments, and, oh yes, my new constant, pain!

Last I blogged, I told you about how I had been having some good days in between some bad ones. Long story short, I had THREE FULL WEEKS of almost no pain! It was unexplainably amazing. In the beginning, I was able to do lots of different exercises. No cardio, no lying flat on my back, no standing and bending backward, no diagonal movements with my right hip, slow hip shifts, and so on. That lasted about a week or so, and then, day by day it kept getting better and better. I wasn’t limping. I was doing jumping jacks (I hadn’t done any jumping in almost a year), jump rope, FULL ON cleaning dance parties with whichever kids found me cool that day (yep, that’s my jam), and almost any other exercises (including lying on my back) I wanted with some modifications here and there.

It was wonderful.

All of that ended 8 days ago. I never share while I’m in the middle of a flare (that’s a frequent word in my life now). It’s scary for me. It’s that simple.

This whole idea I’ve had about this pain just “going away” isn’t going to happen for me. It’s time for me to face the music. I went in to get a primary care doctor who then set me up with a pain management, and rheumatologist. No matter how long I’ve been in denial, it’s here to stay. I hate going to see new doctors or any for that matter, it gives me anxiety. Recently, I can only keep it together until they start asking me to describe the pain. I lose it every time. I get it out, but not without profusely apologizing for being a complete basket case a few thousand times first. Snot, tears, the works. I hate it and there’s no way to stop it, I’ve tied, it just happens. Let it flow.

This part of sharing is hard for me but also sort of cathartic, so here we go….

In the last 8 days, I’ve cried myself to sleep 3 times. I’ve canceled plans. I’ve ignored texts and facebook messages. Lashed out at my family and then cried around the corner. I feel bitter and angry. I get sad, really sad sometimes. The pain is changing, moving, and constant now. I’m on day 5 of a burning in my hips you can feel when the aching calms down, this pain is new. Day 3 of constant electrical zaps throughout my right SI joint, this is also new. Limping is back, of course. All the new pain is joining the old and nothing seems to be subsiding.

I feel defeated. It’s taking over my body and I can’t do a damn thing about it. The amount of guilt I feel for my husband and kids feels too much for me to handle at times. I don’t want this for them. I hate this.

I don’t know how to do life like this. Not yet, anyway.

I’m going to close now. I’m sorry for leaving this imperfect and unfinished. I’ve got nothing left for today.  I’m exhausted. I’m frustrated and I hurt. I always regret not sharing, after the fact but hey, I’m working on it.

I don’t know what this ever-changing life of mine has in store for me but, moving forward and embracing my new reality, one limpy- gimpy step at a time, is my only option at this point.

Thanks for reading

XOXO Cassey

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Just another part of my story

November 2, 2016, was a day that changed my life. Nerve pain, ever experienced it? It’s excruciating. Like having a barbed wire running throughout your entire butt and down your leg and every time you move your lower body, at all, it constricts, shredding and tearing everything it touches. There is no working around it,  you change your life for this kind of pain, not the other way around. It has completely orchestrated my life for nine and a half months now. I know it sounds dramatic but if you’ve experienced it, you understand!

I have Sacroiliac joint dysfunction and was told, from a recent MRI, I have bone marrow edema -this causes tons of swelling in the joint, and am in the process of meeting a rheumatologist because my sports medicine doctor is certain I have rheumatoid arthritis.

About a month ago something happened and the pain started subsiding, FAST. I didn’t care why. Still don’t, although, I wish I knew if it was something I did. I couldn’t believe it. I was sleeping more than 4 hours, I wasn’t in hardly any pain -I have had panic attacks at the thought of having to get into bed, I could get into my car in less than 5 minutes, walk at a normal pace -I have to walk REALLY slowly on the bad days, clean the house with no problems, and I was even getting to workout -my most very FAVORITE stress reliever.

THEN, about 2 weeks ago it started creeping back in.

I chose not to share any of this before because I, I guess I just hoped it would go away. I hate being pitied or treated like I can’t do anything. I am the one that takes care of everyone, everything, and I do NOT like to be treated like I can’t. Sharing this makes me feel incredibly anxious and vulnerable, but I’m hoping I can use this as an outlet when it’s all a little too much, and maybe, just maybe it will help someone else to know they aren’t going through it alone. Hell, maybe I won’t feel so alone either.

Now, it’s day to day. Yesterday was a great day, while the four before that were definitely worse. It’s incredibly frustrating, on top of physically and mentally exhausting.

I keep trying to make sense of it all. Like, how does God give me a husband, 3 children -one with a serious birth defect, another with awful anxiety- and then no way to physically care for them?

What’s the saying “God won’t give you more than you can handle”?

I think we need to have a conversation.

School is approaching fast, and it’s that time again, the boys have to get the oh-so-dreaded haircuts, bedtimes are getting back on track, Peytons homeschool curriculum is all set to go, and Ayden and Maddox are anticipating the first day of public school (Maddox has never had one and it’s been 6 years since Ayden has, it’s exciting).

BUT…..

……in the middle of it all, I am doing my very best to stay positive and take every good day I get as a blessing. It can be VERY difficult to find happiness and stay positive when you can’t make plans, schedule appointments, or even do just normal things like cleaning the house or go grocery shopping because you never know how you will feel that day. In my world, the anxiety that causes can be overwhelming all on its own. I get so tired of telling my family, “I’m sorry. I can’t.” It’s awful.

For me, I can’t dwell on those things because it can be really easy for me to stay there. In that dark place. So, in an attempt to stay out of it, I try to focus on the many blessings I do have; my husband (my best friend), three amazing kiddos, the ability to stay home with my babies, friends I wouldn’t trade for the world, and, most of the time, when I can keep a grateful heart, it doesn’t seem so bad anymore.

“Be cheerful no matter what; pray all the time; thank God no matter what happens. This is the way God wants you who belong to Christ Jesus to live.” 1 Thessalonians 5:16-18

Be thankful every day you get, no matter how hard it was. We survived and we’re only stronger because of it.

xoxo Cassey

 

t25, yoga, & kids, oh my!!

No surprise, life’s been crazy. I wanted to try and catch you all up real quick.

If you don’t already know this, our eldest son was born with stage 4 -myelomeningocele-Spina Bifida. This means his spinal canal never closed properly during gestation. He also has an Arnold Chiari malformation. This is when a part of his skull is small and misshapen pushing the brain tissue down into the spinal canal.

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Ayden and I

Ayden is an almost 13 year old boy who gives me a run for my money, let me tell you. He has a smile that lights my heart and a laugh I could never live without. He has had 15 surgeries, numerous procedures, and is, easily, the strongest person I know. He’s been in decent health for the last 2 years, but the last couple of days have been difficult for him.

He has had a bad migraine and some pretty serious pain in his incision site on his back. I have had to go pick him up from school both yesterday and today. I hate that I never know how serious of a problem I have. You never know with these kiddos. At least, we have a plan after speaking with his neurosurgeon this afternoon and I will keep you posted on that.

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Ayden & Dr. Wehby, his Neurosurgeon!

Peyton continuing to home school is still the best decision I could have made. He is excited to learn everyday. He is present and learning new things with each and every lesson. I just wish he was able to do this with other children.

Peyton with Lemon Surprise, his new plant!

We went to the library the other day and they had a science class he wanted to go to, but after seeing how many kids were in the class he decided he no longer wanted to participate. I didn’t push it too much, but it definitely bothered me. He really has some serious feelings about a room full of children. I am looking into getting some help for his anxiety and I’ll keep you posted on that, too!

In other news, we’ve been on the ketogenic plan for about 6 weeks now. If I’m being honest, I don’t love it. I miss fruit and I don’t love bacon the way everyone else does. I am doing my very best and it’s working, but I am pretty bored with the food choices. I have decided to try at least 4 new recipes each week, that way I can keep things fresh, hopefully.

Typical keto breakfast for me

I am down 35 pounds since February and I LOVE IT. I want to be that woman that tells you I’m fine with whatever size -I’M NOT. I can’t handle my legs rubbing together resulting in the worst, most painful, damn rash that makes you waddle like a duck for a week after. I’m not good with it feeling like a workout just to shave my legs, sitting out of anything bringing the spotlight to me, hiding from any and ALL cameras, not being able to cross my legs, sweating like a pig because I decided to wear my shape wear in 100 degree weather (all for appearances, huh?), or hoping that my husband won’t come back before I’m completely dressed because the thought of him seeing everything is out of the question.

Yes, I want to be healthy, but I also REALLY want to be comfortable in my own skin. I don’t want to hide behind clothes, make-up, and fake smiles anymore. I want to throw on clothes, thoughtlessly, without examining every roll and jiggle. When I’m playing at the park with my kids, I don’t want to be fumbling around pulling shirts down, pants up, wondering how disgusting I look to everyone else. When my husband tells me I’m sexy, I want to believe him.

So, it’s simple; I’m changing it. I am the only one who can give me what I want -my life back.

On the left-196 on the right-161 35lbs GONE!!!

Along with the ketogenic plan, I have just started the t25 workout videos, ya know, “An hours worth of work in 25 minutes.”They’re hard; I have had my ass handed to me both days I’ve done it. I am being careful with my SI joint and my heart (I have inappropriate coronary sinus tachycardia) and taking it slow, but it feels so good to move it’s hard to pace myself. Dan just bought me a fitbit Blaze to help me track all my workouts. He’s a good man.  I am also doing 20 minutes of yoga at night to keep my periformis muscle happy.

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I have set a goal to complete the first 25 days of t25 and yoga at least 3 days a week. Why am I telling you? Accountability of course. I am not perfect and I will make mistakes, but I can’t quit -not again. I want my kids to see that I had a problem, set a goal, and crushed it, not what they’ve gotten so far.

Image courtesy of Pinterest

I want to make them proud; I want to make me proud.

I realize this is a bit scattered -sorry- but sometimes my life is just all over the place .

xoxo Cassey

12 lessons for 12 years of marriage

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I am here to tell you -maybe burst some bubbles, that marriage is HARD, like, really hard, especially if you have a special needs kiddo who needed lots of surgeries/ procedures. Dan and I were just 18 and 19 when we got married -we were kids. We had an apartment, a new car, with a payment, a 1 year old with Spina Bifida, and not a  damn clue what we were doing.

Anyway, lets get to the real reason you’re here! Dan and I will be celebrating our 12th wedding anniversary next month (anniversary ideas welcomed -gifts, too), SO, I thought I would share 12 lessons I’ve learned along to way. It feels like we’ve really been through it all (no cheating -that’s a hard line) and, because it’s been over a decade, I feel like I can now offer advice.

Alright, here we go, these are in no particular order.

(1) Communicate- This is a hard one -took us years- but is key for a healthy and successful marriage. You have to be willing to consistently work on it every single day. Remember, once the kids are gone, it’s just the two of you. Take care of it! Start by writing down things you’d like to work on, then talk with your hubby and add his input (ex: Patience, Give more time). If you have an issue, take it up with him right away -calmly. Don’t yell, I used to; It doesn’t help anything. If it gets to this point just walk away. Also, be open to getting constructive criticism.

(2) Take some time apart now & again- Dan and I went 14 years without being apart for more than a week. He recently started doing so traveling for work and it’s actually kind of nice, I never really got to miss him before.

(3) Arguments need to be fair- I am a firm believer in speaking your mind, but choose wisely. If the conversation starts to get heated, take a breath, leave the room, anything just as long as you don’t say anything you will regret. No name calling and and if you have kids, do have your discussions in private. Lastly, don’t use the “D” word, it’s hurtful, so why do it?

(4) Keep electronics to a minimum- Go do something fun. Try to be in the moment. You won’t get this time back. I know when Dan, or anyone for that matter, is on the phone while we’re spending time together it makes me feel ignored. like there’s maybe somewhere else he’d rather be. So, Put ’em away!

(5) Date your husband- We used to go months and months (I also have anxiety and wouldn’t leave my kids with anyone) without a date. You don’t have to spend a lot of money; it can be at home if you want, I love dates at home. I spend most days with no make-up on, my hair thrown up, complete with the current “mom-iform” – yoga pants and a tee or hoodie. So, sometimes it’s fun to have something to get dolled up for.

(6) Seasons Change- You will both change over time; clothes, hair styles, weight, opinions, everything It can be tough at times, but if you’re willing to voice your opinion, calmly, then compromise can happen. Remember, you love him no matter how crazy he gets.

(7) Don’t share your marital problems online, ever- I have seen this time and time again, it never ends well. Share the good, but don’t share too much. There are some things you should keep between you and your husband. All you’re doing is stirring your own pot.

(8) Talk to someone- A friend, a counselor, anyone who you trust enough to really to vent too. I don’t really have this, personally, but when I do, it usually helps me. Just make sure you don’t get caught in any friend/hubby drama -been there and it sucks. I have found that it usually turns into a problem at home.

(9) Build your man up-  Men need to be boosted. We need to remind them they are doing great things and you appreciate them. I try to tell Dan a couple times a week. All you have to do is send a quick, “Thanks for all you do for you, I love you.” It’s easy.

(10) Take a more submissive role- I know this can be controversial, but hear me out. It can make them feel small and insignificant when we is constantly dictating, belittling, and bossing them around. Put them in the drivers seat; Give them final say. Let them take charge, so they can take care of their families. I am with our kids way more than Dan, so I have the immediate control there, but if something bigger comes up, I will wait and discuss it with Dan. He makes the majority of the “final say” decisions, but I know if I don’t agree I can put my foot down. He’s pretty good about listening.

(11) Have sex with your man- I used to think sex just wasn’t for me after I started having kids. I was overweight, which made me self conscious, and it seemed like we argued all the time because, well, life it hard. Anyway, all of this led to a lot of years when we’d go months -poor Dan, I know.  Once I decided to make it a priority, it changed our marriage -no joke. We both felt more connected and less stressed. If you can, try for at least twice a week; It doesn’t have to be fancy or anything, just connect.

(12) Be there, always- There will be times throughout your marriage, so when times get tough, don’t run away. Talk it out, ask if there is anything you can do, he needs to know you are there -in his corner- and that you aren’t going anywhere.

There you have it, the 12 top lessons I’ve learned in 12 years of marriage. And keep in mind your husband should be reciprocating some of these. Marriage isn’t 50/50, it’s 100/100.

xoxo Cassey

Here’s the Skinny

I am going to keep this short and sweet. My husband and I can both stand to lose some weight. He has never been interested in dieting, despite heath issues and my bitching at him. I, on the other hand, I have tried every diet under the sun. I, too, have heart problems that make it difficult to work out. I also have some issues with my hip and sciatic nerve. Therefore, I will do very little exercise until my leg heals.

That being said, while on a business trip recently he had a conversation with a coworker about his new food plan (he was having bacon). He was on a ketogenic plan. After we got the details, Dan was all in and it was time for me to get to work.

I won’t bore you with all the details. If it strikes your fancy then you can google it. I bought a book called “Bacon & Butter” by Celby Richoux. Basically your body will begin to burn your fat storage’s as long as you stay under 20 grams of carbs (I am not a professional please be kind if you have opposing information). You eat mostly fat, moderate amounts of protein, little to no carbs, and NO sugar. You will also need to drink at least half of your body weight in water daily.

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Dan and I, our 11th christmas

We started last Monday the 13th, so almost two weeks. I have lost almost 26 pounds (11 since I started the plan) and he is down almost 15.

 

We decided we didn’t want to be winded while playing with our kids. I don’t want to hide under layers of clothing, and shape wear. I am so tired of sweating like I’m sitting in a sauna so my husband can’t see my “extra love” while folding laundry. You know what I’m saying? I am so sick of crying while standing in front of a mirror in a dressing room. The amount of anxiety I get as I try clothes on is insanity. I used to love shopping. I want that. I have such a hard time taking photo with my babes, or anyone to be honest.  I don’t want that for them or me. I want to be healthy, show my kids what it means to take care of our bodies.

This is what we’re doing and, yes, I am aware this is not for everyone, but it is working fabulously for us.

I want to wish you luck on your dieting endeavors. I will be posting recipes, tips,  and our progress in future blogs. Feel free to comment and/or follow to keep up.

P.S.  I have been using the grocery list  idea (havinf to remember his birthday party list for me when he gets upset) with Peyton for two days with complete success. What will happen come Monday? I have no idea…..

xoxo Cassey

 

Kinder-Crying

Today was a rough one, to say the least.

I was patting myself on the back after having our daughters very first parent/teacher conference. They have only been in public school for a month. So these are the first tests I’ve received from public school. As a home school mom, I never stopped worrying about how much information they were retaining. I was nervous to hear.

She scored more than a year ahead. BREATHE.

I thought, “I did it”.

Mama & Peyton (1)

 

It’s now time for school to start. I walk my kinder to class (he is having a really hard time transitioning). He is already crying before we reach the door (like most days). The poor teacher knows he here; she meets us at the door. My mind is racing trying to think of anything to make him STOP CRYING. I am now sweating. Perfect. “Let’s take a seat” I suggest, hoping to spark some distraction in his little mind. Still crying, “NO, my tummy hurts, my head, & my leg hurts. I don’t think I can stay.” I flash my best ” concerned, but I believe your invisible hurts” face and force myself to pull it together. I gave him a kiss and a hug, stood up, let him know I would be back soon and I loved him. He’s now wrapped around my legs while she is trying to calmly pull him away, so I could leave. After about 45 seconds she had him. It was time for me to follow through, be strong, and leave. Almost out the door, I made a parenting 101 mistake. I looked back. I instantly felt 2 centimeters tall and wanted nothing more than to turn around and go get my baby. Instant regret.

I tried to fight the tears, but they were already there.I waited outside the classroom, out of sight, until the crying stopped and I could breathe again.

How do other moms do it? Is this normal? Am I doing something wrong? Is this harmful for my child? I don’t know. I’ll add these to the list of other answers I don’t have.

xoxo Cassey