Not Just For Hobo's

I am known for my openness, as proven in this blog… Actually I am known for being too open at times, some might call me an over sharer. It’s been a lifelong problem that I’ve tried to combat but no matter how much I try I just can’t keep my trap (or typing fingers) on lock down. Most of the time it’s fine, actually usually it’s great. I think it’s this trait about me that makes me fall deeply, head over heals into friendships really quickly. I can think of several people that I’ve gone from stranger to bestie within a few days. I also think that’s what causes this blog to be so successful!

However this attribute can also have its downsides as well… Ask any man, and probably almost any woman, I’ve spent more than an hour with and I guarantee at some point I have made them uncomfortable by over sharing.

I probably would have had this issue of over sharing either way but once I was cursed with two diseases that are of a rather personal nature I was doomed. Think about the last time you were injured or sick? Did you text your bff and say “omg I am so over this cold #aintnobodygottimeforthat”? Or post on facebook, “I can’t believe I broke my foot the first day of summer break! You wouldn’t believe the agony of 18 crushed bones!”

We like to share our agony. I don’t know why. It just helps. So since the age of 12, when all my pain started, I have gradually grown more comfortable talking about dysfunctional body parts to people that really would rather not hear about them functioning or not and it has just escalated from there.. It’s not strictly medical over share… breastfeeding, body changes, underwear, relationships, whatever… Not much is off the table.

So that’s why I was surprised when I found myself in the depths of a new phase of recovery that I hadn’t planned for and was really uncomfortable talking about it.

This is a dark side of recovery that inexperienced “healthy” people just don’t understand. This problem is thought to be limited to street urchins and hobos lying on a bench reeking of cheap alcohol… It’s not a problem typically associated with slightly sunkissed, young, smiling, bouncy, suburban moms.

But here I am. (Yes I am bouncy, yes this is a serious blog... I'll try to keep the bounce to a minimum.) Dealing with something that is so much heavier than I am strong. I am having violent withdrawals from pain medication. My “drug of choice” is dilaudid, the strongest narcotic a doctor can prescribe for an outpatient. I am not addicted to it, actually I hate most things about it. I don’t want to take it. I don’t like the synthetic highs, mood swings, unexpected sleepiness or anything about it at all. Except that it relieves pain. I like that part. I have come to depend on it and therefore my body has become dependent to it. 

As my body heals from surgery and regains strength I have gradually needed less and less medication. So over the last few weeks I have reduced the dose amounts and frequency. I feel great, finally able to be myself… Not a doped up version of myself but my real self. My laughs are mine. My tears are mine. My bad moods are mine. My words are mine. I am finally seeing glimpses of the real, sober Deni and I love it. I love her. Unfortunately my body disagrees. It’s used to the drugs splashing through my system and it wants it. No matter what I think or tell my stubborn body, it’s not graciously giving up.

For a long time I saved narcotics for post-op or really bad IC and endometriosis flares but when my son turned one that all changed. He was all over the place! I wanted and needed to be with him. I couldn’t just bring him in the shower with me and offer him a boob anymore... Don't get me wrong, at one that kid was still enjoying his mama's milk but he preferred the drive-thru version (woop woop over share alert). He didn't want to entertain himself in the jumper or be plopped in the exersaucer anymore, he wanted to explore! The pain tried to rob me of that incredible time of his life but I wouldn't and couldn't let it. So I started taking a really low dose of narcotics to free me just a bit from the tight grip the pain had on me.

That was almost 2 years ago and over that time I’ve been through so much and I've taken a variety of medications and doses to get through the pain. As with everything else though, that all went to another level in December, when the real decline of my IC started.  I haven’t been able to go a single day without dilaudid since then. Most of the time I was still in bed in misery, the drugs just reduced the pain enough to keep me from loosing my mind. Some days it would surprise me by being more effective, pulling me back off the ledge to a place that I could tolerate the pain enough to live a shadow of the life I once had. As much as I hate those drugs they were, and are, the thing keeping me from being just a sick body in a bed. Those horrible little pills let me continue to be a Mom, Wife, Daughter, Sister, Friend, and so on... They may make me a slightly hyper, sad, crazy, chatty, tired version but they allow me to show up some what! 

Of course once I had surgery the pain was kicked up to another level, one that I didn’t even know existed. While I was in the hospital I was filled with drugs to the brim. The pain was assaulting and overwhelming but it was nearly unbearable once I got home and had to try to conquer it with just oral meds. I was taking around 8 2mg dilaudid a day but even still the pain lingered and held on for dear life.

I wasn’t ashamed about my narcotic usage. I had just been filleted like a fish, then rearranged like our family room (my Mom seriously has a rearranging addiction…Pretty sure she would have withdrawals if she tried to stop), and had vital organs removed.

As the weeks went by the surgery pain eased but that was just the beginning, I couldn’t just sit around. This isn’t a chronic problem anymore and to get to the other side of this long recovery I have to work for it. I was so incredibly deconditioned before surgery, my muscles were all weak and I was frail. On a scale of 1-4, 4 being as weak as possible, my physical therapist gave me a 3. After being chronically sick for 15 years and almost exclusively bed ridden for 6 months I could barely hold my own weight up to stand and walk. So once I got over the biggest hurdle of post-op pain I started going to physical therapy twice a week, started making myself do my exercises, walk and be as active as I safely could to strengthen and build up my endurance again.

The pain moved from deep inside where they invaded to my whole entire body. Each night I go to bed feeling like I worked out all day long. I'm doing more than I have in a year... which admittedly isn't saying much... yet the pain continues daily as I push my body. 

Although each day brings a new pain front and center. Some days and some pains are easier than others and it really is getting more tolerable... Which of course means I need less medication.

A couple weeks ago I formulated a plan. After gradually getting down to merely 3 a day I decided to stay on that for about two weeks. It was tough and the pain was exaggerated, I would have loved to take one more each day but it wasn’t horrible. The worst part was that every single pain was suddenly neon. Pain I didn’t even know I was having was suddenly all I could think about. A few days before this I was peeling a carrot and accidentally peeled a patch of skin off my thumb, at the time it stung a bit but I didn’t think much about it but suddenly my thumb was throbbing.  My body wasn’t used to dealing with pain on its own anymore. Between that and a few other little tinges it was hard but it didn’t take long for my body to be happy with 3 a day.

My pain continued to reduce so I followed my planned strategy, after 2 weeks I dropped down to 2 pills a day. I thought I was ready. I thought I knew what I was in for. I didn’t.

Every other phase of recovery has been intense but this is a whole different game. This has pushed me beyond anything I could have predicted. This isn’t just a physical battle. I am fighting this phase with my body, mind and spirit.

I was taking one dilaudid in the morning and then waiting as long as I possibly could to take the second one and then I just prayed for an early bedtime. But no matter how tired I was, my body wanted that drug, it needed that drug, and it threw quite the fit when it wasn't given what it requested.

A few nights ago was the worst yet. My body was begging me for a fix as it suffered through the withdrawals. I took as many other medications as I could hoping to trick my body into sleeping through the desperate cravings but it refused to be tricked and would not give in.

I laid in bed covered in sweat, my muscles twitched and jerked completely restless, my body ached head to toe, my incisions and stoma felt like they were brand new, my hands shook, I was violently nauseous, strong cramps rippled through my stomach, I couldn’t catch my breath and worst of all it felt like my heart was going to rip through my chest. My heart was racing, sending shooting pains down my left arm and each breath was ragged and labored.

I was so scared and didn’t know what to do. It was the middle of the night and my husband and Mom who take care of everything during the day were fast asleep. I started to dose off but as soon as I did I was deep in a scary realistic nightmare that felt so real.

Finally at 1am when my eyes were burning begging for sleep and my body was exhausted from the turmoil but wouldn’t quit... I gave in. I took a dilaudid. 

I felt like such a failure. So many people have told me how brave and strong I am throughout the last 6 months but I always brushed it off because I thought if given the choice I would take any easy way out if there was one. I had just proven myself right. I wasn’t strong and I was barely a fighter... I had been tested and I failed. I had fallen off the wagon. I was no better than those scary, desperate addicts on the street starving for a fix.

Or so my rock bottom confidence led me to believe... 

After years of debilitating chronic pain and weeks of severe recovery pain that I couldn’t do anything about, I finally had an ailment I could control. I abused my power. I used it to stop the agony and the horrors. All I had to do was take the medicine my body was pleading for and it was over. I tried my hardest to be strong and to get through it but I couldn't. 

I knew I was going to have to go through it eventually, I knew I had already made progress and I knew I was going to lose the momentum from all the work I had already done but in that moment… In the literal and metaphorical pitch black… I didn’t care.

My shaky hands searched for the right bottle on my nightstand, I took it and waited for it to settle my body’s tantrum, and sure enough I felt better and was asleep in no time. 
  

I woke up the next morning in more pain and so discouraged but I knew I had to take the medicine.

That day I had physical therapy, the next day was busy with 4^th of July celebrations, then we went to my Grandparent’s cabin (the best place on Earth) , then yesterday was a busy and fun summer day at home doing summer time chores- including stocking our freezer with delicious (if I do say so myself) raspberry jam! I wouldn’t be able to do any of that without taking dilaudid 3 times a day.

I FINALLY feel up to living again. I FINALLY feel up to cooking!  I FINALLY get to play outside with my husband and son instead of just watching from the window. I FINALLY get to go to family gatherings rather than being left at home alone. I FINALLY get to feel the sunshine on my skin! I FINALLY get to watch my son experience new things! Those things are nothing to a "normal" person but to me it's like climbing Mt. Rainier and it feels great at the top! 

Although what comes up, must come down. It's not easy. You wouldn't believe how sore I am at the end of a day doing minor tasks. There is still so much I can't do. I have a long road ahead of me... 

But the little things I can do, I revel in them. I try to appreciate each ache and cramp my muscles feel as they develop because that means I'm on my way to this new life that I decided was worth putting myself through this hell on earth recovery for.

None of that would happen on just 2 dilaudid a day. I am just not ready. There is still too much pain to be able to function without the drugs and I’m not willing to sit in bed, just waiting to feel better… I am going to get up, work hard and LIVE.

This is such a hard part of my recovery. I want my new life so badly but the pain, head to toe, is still raging. I am using the tools I have. Call me weak or a quitter but personally, I think if I was lying in bed and intentionally not pushing myself so that I wouldn’t have to take more narcotics that would be so much worse. This is short term. This is temporary. I WILL make a full recovery from this eventually and will finally be rid of the meds when the time is right. 

I just have to remember that…

There is no hurry to get through this or to get completely off of the dilaudid. I will continue to take my time and make conscious decisions about when I need to take it. I will push when I can and rest when I need to. I will keep supplementing with as much Tylenol, Ibuprofen, Benadryl, Valium and anti-nausea meds.

Most of all… I am going to continue to dip my toes into this new life that I didn't even know I could hope for a year ago. For now I will take my 3 a day and I will pat myself on the back for getting down to 3 from 8 in just 6 weeks. 

I'm sorry this blog is so convuluted... It took me a really long time to write because I was so afraid of judgement and disappointing people. I wanted to explain why I took the narcotics to begin with, how it got out of control, and now how I'm slowly weaning. It's a serious topic and one not to take on lightly, I'm thankful my braid isn't addicted like my body is and I wanted to express that in the right way... It's a lot to stuff into a blog written by a bouncy girl from a small town that usually makes light of the hard stuff. I love my readers and I felt compelled to share this horrible, seemingly impossible stage of my recovery. I'm sorry it's choppy and fluffy... Please love me anyway. I promise, a bouncy and fun blog that has good structure and flow will come out of me some day... 

I will say... As I prepare to click the big "PUBLISH" button I have a sense of relief getting this out there. The sad and scary truth underlying all this... I will have to get through the withdraws some day not too far away and I will need my amazing support system without worrying about being ashamed and embarrassed of my struggles. 

Now. Here is some photo evidence of the life I am FINALLY starting to lead and the reason I can justify taking the medicine that has its major flaws but gives me life. Who WOULDN'T continue doing whatever they could to enjoy this life?! 

Do it all for this boy. My heart. My soul. My love, Titus James. 

Cooling off redneck style... 

Relaxing in the shade with this handsome boy

I thought I was taking a selfie of me and Titus eating fudgesicles but he left... 

Oh! There he is! 

On the forklift with my boys!

4th Of July! 

When you live in a small town, you sit on a sidewalk and watch a parade on the 4th of July and you love every moment. 

I look happy. 

Teaching my little guy how to properly roast a marshmallow 

Telling him something... 

He apparently doesn't want to hear it...

But he loves me...

He is the kissy-est boy that ever lived. Love every sticky, sloppy one I get! 

Playing "Old Man Horseshoe" with my Grandpa! Love this.  

Love that Titus has a cousin so close to his age! 

Love watching them grow up together!

My boys.