Tag Archives: chronic pain

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