I am blessed.

When I think about a support system, I envision some kind of intricate assembly line like on the show, How Its Made. Each bolt, lever and doohickey has their very own job. Together they form one solid machine that performs perfectly.  

I have made it the last 12 years with IC thanks to a very precise and complex support system. I can guarantee that I wouldn’t be who I am today without each gog and wheel that makes up my well functioning appliance.

One of my hopes when I started this blog was to help family and friends of IC sufferer’s know how to help their lovelies. I am so fortunate in my solid support system and I pray that every person with IC has at least one person to help bear the weight of this life sentence. But in an ideal world she would have several people each with their own job. One who lets her vent, one to motivate and encourage but never minimizes, one that physically supports her (i.e. drives her to the doctor, takes over for her when she’s sick, hugs… lots and lots of hugs), one that thinks positively, one that is a realist, one that pushes her, one that lets her relax, one that lets her cry. None of them ever question her pain, never blames her for IC, always makes her feel normal, always makes her laugh and most importantly always loves and accepts her.

It is one of the hardest jobs you will ever have but I guarantee it is also one of the most important and you will be forever loved. Even though we hate it, the nature of IC makes us very dependant on other people and those people have to be strong and solid or we will not do well in our life with IC. So if you are a tool in some ones support system please take my advice. To summarize in three steps… just love them, support them, and never doubt them. Oh… and NEVER complain about the pee soaked pants in the bathroom sick… ask my husband, he’s learned that lesson well.

A day I will never forget was my wedding day… obviously it was a very special day for many reasons but to have every single person who loves me in one room was amazing. I actually lost control of my bladder and peed in my beautiful wedding dress. My Mom and sisters patiently helped me change my nylons and calmed my frazzled nerves. Then I walked down the isle, arm in arm with my Dad seeing the 200 people there to celebrate with us and of course Zach standing at the altar smiling as wide as his face would allow… it was too much… I started sobbing. It was one of the best days of my life and just a glimpse at how very blessed I am.

Dad and me hand in hand down the isle

Some people balked when I got engaged at 20 and married at 21 but God gave me Zach just when I needed him. Zach has been there for me since day one. He listened to my overly detailed descriptions and warnings about what it would mean to hang out with a girl with IC on our very first date then went home that night and googled interstitial cystitis to find out more.

Since then he has been so patient with every canceled or ruined plans. He has been there for every surgery and has doted on me during my recover. He brings me what I need in the shower and even some times sits on the hard bathroom floor to keep me company. He is happy when our date night it ice cream and a card game rather than a lavish night out. He holds my hand through the pain. He loved me when I was EVIL from medication side effects. He never pushes me or makes me feel guilty. He calls me his “PYT with IC”, (pretty young thing for you Michael Jackson haters!) He has been the perfect husband for this season of life and I imagine he will continue to be in the fall and winter of my life as well. I am blessed.  

Zach and me when we first started dating

Titus is a tiny little screw in the giant machine but if it were to get unscrewed just a tad the whole thing would come crashing down… no pressure little buddy… He doesn’t even know it yet but he does so much for me. He pushes me to get out of the shower and to live a life that some times seems too hard. He makes me smile and my heart shiver with love no matter what I’m going through. I am blessed.

Just minutes after Titus was born

I don’t even know where to start with my other key apparatus in my life’s support system. My Mom was the one who took me to the pediatrician on the first day we thought I had a bladder infection. She was in the room when the first anesthesiologist knocked me out. She has helped me through every single surgery. She has taken care of Titus on days when I can’t. She has cleaned up thousands of my puddles of piddle when I have an accident. She brings me food in the shower. She does my laundry when I don’t have the energy. She cries with me. She laughs with me. She supports me. She thinks I’m brilliant and exceptional. She does so much for me; I pray daily I won’t take advantage of her love and support. She is the best Mom God could have given me! I am blessed.

My mom and me at her birthday party 

My Dad is another important part of my device. Because of his running a company, his own health issues, and he’s a boy… he hasn’t been as physical of a role in my IC journey but he has supported me through every day. I think it may be harder for him when I’m in pain than it is for me. He prays for me and his pleading for my healing make me confident that it will happen one day. His most important job is that he makes me laugh when there really is nothing to laugh about and makes my troubles seem far away. I am blessed.

My Dad, Titus and me on a golf cart ride 

Another important person in my life that has been with me through it all is my sister, Jeny. She is only 13 months older than me so we have always been really close and have done every thing together. I know it’s been hard for her to have a sick sister. A lot of the attention has been on me over the years because of IC, well truth be told, before that I’m pretty sure I had props to entertain her unsuspecting friends during sleepovers. But from the time she was 13, I was sick and sad. That’s a lot to put on a 14 year old. She did great though, she has always helped me and though she gets annoyed with me. (I actually do talk this much in real life) She is my greatest defender and would knock any body out who talked bad about me. Not only all that, but she has been my best friend since I was born and will be until we’re old and still quoting Friends episodes.

Jeny and Deni- BFF's for life

A few years ago I was in pre-op getting my IV put in when I got a text saying some thing like… “best of luck, praying for you, oh by the way while you’re in surgery I’m getting a tattoo for you. Love you!” I quickly yanked my hand from the nurse searching my arms for the perfect vein and tried to sway her before they knocked me out. No such luck. I woke up with a picture of it on my phone…. Although my Mom nearly had a heart attack and I was definitely stunned, I was so honored! The butterfly is the unofficial IC mascot and right inside was my very name, branded on her wrist forever. I am blessed.

Forever.

My older siblings Dana, Dave, Todd and Carolyne are also champions in my support system. Although they have not seared my name into their flesh they have been with me through every thing. Dana and Dave have always prayed for me through surgeries and flares. Todd was at our house when I got home after my scariest surgery; I was still awake when they started and I remembered it all. I couldn’t even lay on my stomach with out having flash backs of the pain of being cut open… he was definitely petrified and didn’t know what to say but the look in his eyes told me I was loved… and he would kill whoever did it to me if he could find them. Carolyne, Todd’s wife, has become a good friend and visits when I’m bored but can’t get out of the house. Not to mention the beautiful nieces and nephews the four of them have given me whom I love with all my heart! I am blessed.

My immediate family!

If you already think I’m lucky in the sibling department you won’t believe the list continues with Zach’s brother Jared and his wife Rachel. Not only are they great in-laws, they are our best friends. They hang out with us at our house when I’m not feeling good, we go out and celebrate when I am, and we do calm leisurely things when it could go either way. They always have our back and are willing to help in any way they can. Best of all they accept me and love me even though we’re tied through marriage and not blood. I am blessed.

The four of us going out to dinner for my birthday

My Grandparents are not only pillars of our family but a strong foundation in my support system. They always like to be updated on my latest IC trails and tribulations and come over to visit when things get bad. I spent a lot of time at their house when I was growing up with IC and my Mom had to work. It was hard to be sick and young but those times are some of my favorite memories. Playing games and lounging around all day with these people that loved me so much. My Grandma has taken me to a few procedures and doctors appointment, she has always supported me and been my biggest Team Deni supporter. To her the doctors are always wrong and I am the best patient ever! On top of seeing her regularly we still have long phone conversations weekly. My grandpa is a strong and silent type but he chuckles quietly at my silly jokes and shakes his head in frustration when I tell them the latest IC hardship. They are my go to supporters and always just a phone call away. I am blessed.

4 generations

Speaking of my Grandparents… they also have 3 other kids besides my Mom. My aunts Claudia and Ginna and my uncle Jay! Claudia emails and calls regularly to check on me and is real strict when it comes to the rules I should follow, especially while recovering from surgery. She always tells me to call the doctor… if it were up to her I would have a direct line to them for easy access 24/7. She always tells me how amazing my attitude through every thing is, which is a good reminder to have a good attitude. I am blessed.

My aunt Ginna is a very hands on, “let’s fix it” supporter. She wants me to try new things, new diet restrictions, and new medical trials. She has bought me many IC books and encouraged me to push the doctors to try the latest and greatest. She makes me hot water bottles when I’m some where that I can’t shower. She hates that I’m in pain and wants to fix it. I am blessed.

Jay is my very cool, hip uncle. He tells great stories, knows all the good places to hang out in Seattle and is literally the most talented person I’ve ever met.  Not only that but he is a man full of unwavering faith and once said it would be interesting to see me write my very own Psalms. I like to believe that some day I will give that a try, as daunting as that sounds. He also made that awesome cartoon for my Avenger blog and offered to be of service in the future! I am blessed.

Naturally with all this family I would have cousins as well… 6 to be exact. Well actually it was 6, until they all got married so now I have 12. These are 12 of my best friends. I some times have to really think to remember which ones are the original cousins and which are married in. I wish I had time and space to go through each one and boast about their many merits but just trust me when I say they are an impressive bunch. The men have welcomed Zach into the family and love us both. Even though I’m the very youngest by several (sorry, just sayin…) years, I feel completely included in the group of women cousins and very accepted by all of them. When I was 5 and my oldest girl cousins were 14, I would have never guessed they we would be so close 20 years later. They all check on me regularly, pray for me, visit me, and most of all… support me. Like my whole support system they each do different things for me in their own ways. I am blessed.

My WHOLE family... minus a few of the recent babies! 

With my unusual and unpredictable life it’s quite tricky to stay close with friends. When I don’t feel good it’s hard to push myself to get dressed and go out to catch up with friends. But some how I have stayed friends with a few from junior high and have even made a couple new once since. It’s hard to be friends with me… I cancel plans, I wear sweats in public, I may pee on your couch at any given time… but against all odds I have friends! Even if I don’t see them often or we just catch up on facebook... I am blessed. 

Kassy and me at 6th grade camp... friends for 18 years! 

Elizabeth (friends for 22 years) Janette (friends for 12 years) and me in Hawaii 

My friend Nicole and me... friends for 6 years!

As you can see my support system is a strong machine built up of many parts and I am very blessed. Each one is essential and without any one I would have serious problems. I pray that every single person with IC has a strong base of support or at least one person that they can always count on. I wish I could loan out my system to all of you because truly… it’s one of a kind. Thank you to all of you who make up this complicated system. If you are a part of my or some one else’s support system please know how important your job is and continue to be patient, understanding, supportive and most of all loving so that we all know we are blessed.