pain...

Pain is a bitch. I hate it, I hide it so well though that you would never know I spent the morning crying with an ice pack on my stomach. That I swallowed back two not working pain pills.. The pain pills that are basically equivalent to Ibuprofren  cause I am allergic to anything else. That I didn't sleep the night before but just laid there wishing it would stop. 

You'll never know this, you'll never know any of this... Why?! Because I am a mom of two boys who need me and look to me to run their lives everyday. I have to be that person they depend on so what and how I feel doesn't matter. I hide it so I can be normal for them. 

I hide it so I can be normal for everyone. I have a job, I love my job. I also have a full time college education I am pursuing and a full time wife status that I am trying to pull off yet somehow always fall short because some people just can't understand how pain changes people and how pain causes people to not show emotion because you can't stop once you start. 

But the pain, people don't understand pain. Especially when you physically don't have a "reason" for it. I do have reasons for pain but no one knows that either. See I don't tell people about my reasons, I keep my surgery and my problems to myself. I strive to be normal. It's everything I want, I hate that I am not. I hate this person I am, but I can't change the pain. 

So I just hide it so well you never know it exists. 

Ramblings

So I feel like my blog has always brought me a joy and outlet for writing and expressing my feelings.. And I've been very neglectful to it and the people who follow it when for so long this was my way of dealing with a lot of emotions I was going through mentally and physically. 

Over the past year, I've kept in so much. I've been going through so much with my health and complications from my surgery (see previous posts) that I haven't had the time or ability really to sit down and express everything. It's been a very challenging recovery, mentally, physically and emotionally and to say I am over it or it's all better is definitely not a true statement. But right now, I don't want to start back into my blog with all that has happened, I am trying to not relive or think about all that IC did to me, has done to me. So I'm not going to write about it, at least not yet. Maybe I will come back to it at some point and share more of my story but not now. 

I am coming back to writing as a means of healing and reflection and all the good it does me. I am going to venture into expanding what I write about. Sure, I'll still be writing about my children and their struggles but also some other topics. 

So this is just basically me rambling about how I'm back now, and this is the first post since 2015. It's not much but it's been a while so I'm sure it will all come back eventually. 

 

12 days...

It is down to 12 days before my surgery... luckily lately I have been extremely busy trying to get all my Christmas shopping, thanksgiving shopping and cooking done, schoolwork and all holiday related activities done; so I have had very little time to sit and think about the surgery.
I know if I do, I get a flood of emotions and worries over everything. I don't tell many people how I actually feel about the surgery, how extremely terrifying this all is. The thoughts of recovery and hopes that it will all go as planned.
The chances of setbacks and ending back up in the hospital are high. The surgery is very complex and so many things could go wrong.
I don't even know where to begin on explaining to my children about the surgery or that Mommy will be gone for 2 weeks. I am their main source of dependency, and the calm in their busy lives.
This is going to be hard on all of us, and I hate that the surgery will be done 45 minutes from my house and kids. And in the same hospital where I spent so many endless days and nights with Zach when he was so sick. So many memories are in those hospital walls and engrained in my mind surrounding those couple of years.

Can't back out now, I am so within reach of this pain free better life with no IC.
12 days...
12 days...
12 days...
I can do it.

I am IC

I am the poster child to Interstitial Cystitis...
I was diagnosed in March with a 400 ml bladder postmarked by all the typical IC inflammation. (For perspective a normal persons bladder is usually 1200-1500 ml)

My everyday consists of pain, painful bladder that feels like a constant throbbing with knife like sharp pains along with severe lower back and having to pee every 30 minutes to an hour to help relieve some pain only to bring a different type of spasming pain. My bladder lining is gone and so therefore all urine that goes into my bladder basically is like pouring acid on an open wound. The food I eat affects it, drinks affect it and stress.... stress is a HUGE factor but how do you not be stressed when you're in so much pain.

Since March I have tried every medication and treatment out there to help control it, even ones that put my health at more risk. I've been immune suppressing medications, participated in painful clinical trials and had more allergic reactions to medications just with the hopes that one would help. The bottom line is that it has gotten to a severe state fast and at this point, there is no treatment or medicine that will make a difference. 
The only thing that will take away the pain is having my bladder removed. To make it all worse, I am allergic to all narcotics so I get ZERO relief from pain....EVER! So I've made the decision to have my bladder removed.

This isn't an easy decision, so please don't tell me it's not a big deal or act like my pain is minimal. IC pain is comparable to END STAGE RENAL FAILURE PAIN AND END STAGE CANCER PAIN. So it is a big deal. And not being able to take pain relief medications is torture.

In one hand I am so utterly happy that I have this option. I have a day that will result in a better pain-free IC free life.
But in the other hand, I am scared shitless. This is a complex surgery that will leave it's mark. Not only do I endure the 6-10 hour, the 2 weeks inpatient and up to 6 month recovery time to get to my life. But I also deal with the self image and emotional toll. I will have my entire bladder removed, and several feet of my intestines will be made into a new bladder.  It's called an Indiana pouch, a fake new bladder that will work better, hold more and cause NO pain.

I know this will be the hardest thing I do to myself. And while it was a decision I jumped at when given the chance, it is a decision that will change everything about me.
I am very lucky to see one of the best IC doctors in the World and I trust him and the decisions he has made for my heath.

He is an amazing and compassionate doctor who actually cares about his patients and their quality of life. Cause let's face it... that's what I'm choosing. I am choosing quality of life over everything else. I want to do the things I used to and want to in my future. 

Some people tell me I have strength and courage to endure and do this, I don't know about that. I am scared and nervous and putting my life in the hands of someone else. Kissing my kids goodbye and saying I love you will be the hardest thing that morning. It's a long surgery, a very complex surgery and it has risks. That scares me the most.

But I'm going to act strong and continue to act like everything is normal for the next two weeks until my surgery date. I have gotten really good at FAKING being normal and strong so this should be no big deal, right?!

Luckily I am very thankful for a small handful of friends who help me through and listen to my struggles and offer encouragement and love. It's a hard thing for most people to understand and deal with, and I get that, but I don't need the ones who don't understand.

So on December 5th, have faith in my Dr and my surgery and the outcome of my new life.

 

Suffering

Almost a month ago I was diagnosed with a painful auto immune disorder. I've actually been dealing with the effects of it for over a year and maybe longer but finally saw the right doctor and got diagnosed.
So I have Interstitial Cystitis, a painful bladder and pelvic disorder. But honestly it affects so much more than your bladder. It causes inflammation in your bladder walls and surrounding muscles, causing pelvic floor dysfunction. To say that is painful, is an understatement. It hurts everyday, all day, with no relief. I have to urinate almost every 30 minutes and can't empty my bladder so it always feel like I have to go even if I just went. And my bladder spasms causing me to not be able to go because my body fears the pain.
I have been through so many medications over the past month. I have tried bladder instillations, pain meds and now physical therapy. I am taking more meds than I have ever taken. I just turned 30 this past week and yet I feel like a 70 year old. It sucks to be quite honest. To try to function like a normal human being is unbearable some days, but I have to and it takes all I have to do it.
I am also coming to terms with having a chronic auto immune disorder that drastically changes my life. I have to follow a very strict IC diet, that restricts me from eating and drinking almost everything. And I constantly get asked how I am feeling..
I really don't want to talk about it, I hurt. It feels like I am being sat on by 400 lb person while they are stabbing a hot knife in my lower abdomen and twisting it over and over and over again. Do you get the picture?? If you have ever had an UTI, think about those symptoms 24/7 and 10 x worse. Don't tell me you understand cause you don't. And don't ask me if I am going to do something today other than lay on the couch with a heating pad on me. There is no way to explain to you the emotions and pain I am feeling.
I try not to whine and complain and honestly most days you will never know just how bad I feel. That's the mommy in me I suppose. I will put my needs aside because I have to. But everyday is tough, everyday sucks and hurts.
So now I'm living with IC, actually no, I am suffering with IC.