๐Ÿ‡บ๐Ÿ‡ธWe Need Your Support๐Ÿ’œ


Let’s cut to the chase, no one likes to read something long and drawn out (or so my husband tells me ๐Ÿ˜Š). ย Or maybe you do, and if that’s the case, please feel free to scroll down to my other blog posts and get caught up to speed!

I am participating in the Take Steps Walk for Crohns and Colitis. ย I have attended the Take Steps walk the last two years with my husband, and as it turns out his military obligation will prohibit him from being able to attend the walk with me this year. ย I am lucky enough to have a few of my other close friends walking with me, and I couldn’t be more grateful to them for their continued support from the beginning of my UC diagnosis in 2014. ย With that being said, Team JD will have one less member walking–which means I really do need your *extra* support! ย My husband is a strong supporter of me, my illness and he’s there to encourage me and challenge me everyday. ย My husband is a fit marine and having him there to do the walk with me the last few years has been extremely encouraging. ย This year, I will go to San Diego with a little less pep in my step–as having him there really does help ease different anxieties and fears. ย Since 2010, he’s never let me fall. ย I mean this quite literally-in 2015, after what was believed to be a drug induced seizure, caused me to seize up and posture for an extended amount of time. ย As the sezuire started, my husband caught me before I fell to the ground. ย My husband, in a way, has been my security blanket throughout this illness. ย If I need something, he is right there to help and catch me when I was falling. ย I, luckily, have no recollection of that seizure–however I can’t say the same for my mom and husband. ย Although, this blog post wasn’t intended to be about that day or my seizure–but rather about how my biggest support system won’t be there on May 20th. ย I have been a marine wife for 7 years, and I’m capable of handling a lot…but I will miss the support of him for this walk. ย I know, almost certainly, that he will feel bad or guilty if he reads this post–(which is not my intention babe). ย I am beyond proud of him for his continuing sacrifices- for me, my illness, and our country. ย As sad as I am to be going to the Take Steps Walk without him, the feeling of pride I have for him as my husband far surpasses any sadness. ย So please, Donate for me and the 1.6 Million Americas suffering from IBD–But also, donate for my husband who will be working to keep you safe and relying on me to be the strongest version of myself On May 20, 2017. ๐Ÿ’œ๐Ÿ‡บ๐Ÿ‡ธ๐Ÿ’œ๐Ÿ‡บ๐Ÿ‡ธ๐Ÿ’œ๐Ÿ‡บ๐Ÿ‡ธ๐Ÿ’œ

 

http://online.ccfa.org/goto/TeamJD

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Take a step with me…๐Ÿ’œ

For the last two years I have attended the Take Steps for Crohns and Colitis fundraising event in San Diego, CA.  I have inspired and encouraged others to partake in this walk in other major cities as well.  I couldn’t be prouder of my friend Stephanie for her continued effort and support for the CCFA!  At this time I would kindly appreciate any donations-even the smallest amount can make a difference.  My husband and I usually do this walk together, it’s symbolic and emotional for us both.  He has taken every step with me from the beginning and I couldn’t feel luckier to have him by my side again this year to walk and reminisce about all we’ve been through with this disease.  There’s something empowering about being with such a large group of people who understand all that your going through.  We’ve all walked in each other’s shoes and on May 20th the IBD community of San Diego will come together again to show the world…we need a cure.  We need a cure, we are all suffering until that cure is found.  So let’s fundraise and find it!  From the bottom of my ๐Ÿ’œ….thank you for your donations!!! 

Follow the link below and donate! โคต๏ธ

http://online.ccfa.org/site/TR?px=3142464&pg=personal&fr_id=6816&s_src=boundlessfundraising&s_subsrc=:sub_source

A Hair Milestone ๐Ÿ’๐Ÿป๐Ÿ’‡๐Ÿป

We’ve all heard the hashtags #longhairdontcare but for me it was #shorthairdontcare-except I did.  Almost a year ago to the day, I decided I had had enough of my hair falling out all over the bathroom floor.  It was not only a nightmare to clean up after, but the feeling of my hair falling down my body in clumps while in the shower brought me to tears almost daily.  As if I hadn’t gone through enough, I was now losing so much of my hair.  I always tried to maintain a positive attitude and thought to myself, it can always be worse and at least there’s regrowth.  Recalling my feelings, even now, brings tears to my eyes.  Until this point I had been able to hide what was wrong under my clothes-but when my hair all fell out I couldn’t hide the true torture I was enduring anymore.  Anyone who has ever known me, including my hair stylist of nearly four years, has known me with long, thick beautiful hair.  I was blessed with great genes (thanks mom!) and my hair has always been my thing, my pride.  I have my cosmetology license and have always been into styling and doing my hair.  Even as a middle schooler, I can recall waking up early to curl or straighten my hair.  It was always my thing.  That is, until July 1, 2015 when I had no choice but to have it all cut off.  I always knew I’d write about the experience of losing all my hair, until now though, I haven’t felt comfortable enough to do that.  Even after I got the pixie cut, which everyone in my life admired but me, I always reminded myself that at least I have hair.  I was never bald, and I can’t even imagine what that is like for other’s who’ve endured losing every bit of hair they had.  However, at moments it made me feel less feminine and very insecure.  Every time anyone would compliment my hair, I felt compelled to tell them why it was so short.  Usually I would be vague and say something to the effect of, “I didn’t have a choice, but thank you.”  As I was reminiscing with my hair dresser last month, I reminded him that a year ago was when we chopped it all off (or what was left of it).  I have come so far in a year, and although I have a hell of a long way left to go-pictures are a reminder of how far I’ve come.

I wanted to share, how I feel, my hair has grown so much because I do believe it is in large part to taking the vitamin, Biotin.  You can get it anywhere, any store that sells vitamins-it has helped me tremendously.  I was blessed with a thick, dark, Italian head of hair.  My mom would remind me often, that she had so much heartburn while pregnant with me.  And as a result I was born with a full head of hair.  Genetics are key, but biotin (I feel) was also the key.

After I cut my hair, I was devastated (to say the least)-and my mom’s friend who has known me nearly all of my life sent me this message and I wont ever forget it.  She said, “Hi, Jerica-when your mom first told me about your hair falling out I was completely heartbroken for you.  So much of who we are is literally tied up in our hair (unfortunately).  Then your mom told me that you were thinking about cutting it short & I couldn’t imagine how devastating that must have been.  But knowing what a beautiful face you have, I was certain that you could pull it off.  Well, your mom just sent me a picture of your hair (the one with the bangs).  Jerica, you look AMAZING, GORGEOUS, I love, love it! I knew you would be beautiful! Xoxo”  Throughout the year, this text is something I’ve reread because it is so true-so much of who we are is LITERALLY tied up in our hair.  I gained a confidence I didn’t know I had, and I appreciate so much more the little things- like being able to put my hair in a half ponytail (as I’m still not able to fully put it all up yet).  I feel blessed, and I’m so thankful for the hair that I can pull up.  In fact, the day I was able to use my old ponytail holders again, was one of the most exciting days I’ve had-it was a hair milestone!

Today, I wanted to share with you (a year later) my hair milestone and to say thank you to everyone who reminded me that throughout the process of growing it back that I was still beautiful.  Especially my husband, who continuously told me he loved it-and meant it!  We don’t always love the hands we’re dealt in life, but if you can learn to love and enjoy the game it makes the bad hands easier to handle.

๐ŸŒŽ๐Ÿ‘๐ŸD

Today is world IBD day…a day to educate one another about the different types of inflammatory bowel diseases.  I stopped to think about what world IBD day really means to me.  Some of the words that came to mind were brave, purple, strong, support, steps, courage, fear, strength, pain, and awareness.  What I write, the world might read.  Words are powerful.  The day I was diagnosed-with just one word, my world changed.  Colitis.  I’m going to do my best to get through this blog post without a tear today-and so far so good.

 

What I believe a few of my IBD friends would want me to say…we are strong.  Mentally and physically we’re fighting all the time.  We’re fighting to make it through the day, and in a way we’re magicians too.  We hide the problems so no one else can see.  We pretend most of the time that everything is ok-when really we are counting down the hours until it’s an acceptable time to crawl back into bed.  In fact, most days-my biggest accomplishment might be staying awake all day long (usually this doesn’t happen-which is why it’s an accomplishment).

We take pills, and meds and more pills until we’re blown up on prednisone.  This is the reality of an IBD patient.  Since no one knows what causes it–truly–and everyone’s body is unique, there isn’t one clear cut way to manage IBD patients.  So typically, I’ve found, doctors treat the symptoms instead of the disease (but not before giving  Apriso and Lialda whirl).  You’re bleeding-try Prednisone.  You’re tired-take iron.  You’re nauseas-take Zofran.  You’re in pain…now wait a minute…how much pain..on a scale of 1-10.  Ok, so my answer is usually 7/8…because in my opinion there’s what we call “tolerable” and “intolerable pain.”  IBD patients know, pain is inevitable –it just is.  Therefore, if we’re in pain and we’re actively seeking out help it’s for a reason.  If we had a slight pain, we’d be out doing something we enjoy.  Ok, so the pain is a 7…take Hydrocodone or Dilaudid.  Your back hurts… try Lidocaine patches.  Things still aren’t going well…let’s try 6MP..it’s a chemo pill but it’ll be ok.  All the while, we keep swallowing pills and trying to keep the symptoms at bay.  Have you ever met those people who say, “I don’t like to take pills”–and you think…they don’t know how bad a pill is until they’ve tried to swallow a potassium pill.  Those potassium pills are no joke!  We’ve also met those people who cringe at the sight of blood or getting an IV put in…and again we think…they don’t know pain until they’ve had to have potassium intravenously pumped into them (which burns like fire in your veins).  Oh and by the way, I’ve had/used all of the above.  So you can’t sleep because you’re up going to the bathroom in conjunction with the Prednisone that (had I known in college keeps you awake-I might have been able to pull an all nighter better–kidding mom)…but seriously…Prednisone is the devil in pill form.  It keeps you wired…so…try Ambien they say–it’ll help they said.  HA!  If I had a dollar for every time a doctor told me to try something, I’d have enough money to have a lab created colon made.  I could go on for days, the point is…IBD is hard.  They can pump all these miscellaneous drugs into our veins but at the end of the day–we’re stuck.  We’re at the mercy of all these doctors and specialists.  At times, it feels like the blind leading the blind.  Oh…you’re also feeling sad/miserable/depressed because you have a disease that you didn’t plan for and you’re life now revolves around where the closest bathroom is…take Zoloft, Lexipro or Wellbutrin (dealer’s choice really).  If you think I’m utilizing humor mixed with a side of sarcasm to lighten this blog up–you’re right.  The funniest things are true…and I am by no means even stretching the truth.

Awareness is crucial to the success of discovering a cure.  One day, one step at a time we’re all trying to help solve what seems unsolvable.  Through support groups I’ve made friends, we all have similar symptoms have taken similar drugs and understand the affects–but we’re all different and we don’t understand how this happened to us.  All diagnosed before the age of 30 with different backgrounds, different genetic makeup, yet we all have one thing in common-IBD.


 

 

It’s not ok…and that’s ok.

You feel like no one understands, and the few that do won’t make you explain.  It has been 73 days since my last blog.  A lot has happened, a lot has changed.  I’ve never been one to put my entire life on Facebook or social media-and I only do it now to help and educate others.  No matter how much I explain my situation there’s always so many layers of confusion for my friends and family.  My best friends know, don’t ask me “how are you”…if it’s bad..I’ll tell you-other than that we need to discuss something else.  I had my last surgery (for now) a month ago.  I’ve learned my strengths and I’ve learned my weaknesses.  I’ve literally had moments where I don’t think things will ever get better…and I’ve experienced a loss of apetite that no Italian should ever have to endure. I become so frustrated that I feel like lashing out-but I don’t.  I’ve become silent these last few months because I wanted to be the positive “it’s ok” voice that everyone around me needs to hear.  It’s not ok, it’s very very hard to be sick.  Any kind of sick.  I’ve also never wanted anyone to feel bad for me-in my opinion I feel bad enough…no one else needs to feel any bit of how I do.  I often think about blogging this or that-and I know what I should say and what I actually feel couldn’t (at times) be any more opposite.  I also feel like at this point, people are wondering…is she better…or is she still sick.  No one asks me, but I can only imagine the thoughts.  If I post a picture…a picture captures a moment in time.  In that moment, I might be ok-in the next…I might not.  It’s been 73 days since I’ve posted my last blog…I’m trying my absolute best to get back to where I was mentally, physically and emotionally.  Everyone is dealing with something…everyone…and for that reason I don’t feel special for my feelings. All I ask is that when anyone sees me out-you don’t say “how are you”-my answer will always be hesitant and I will probably lie to you.  When I’m great, you will know…but until I’m back to me…instead I’ll just be this.  I’m frozen for now- waiting, praying and hoping for a day when the pain mentally, physically and emotionally will cease.  It’s not ok…but it’s ok.

This Too Shall Pass…

The excruciating pain I felt after my first surgery was like nothing I had ever experienced before.  Prior to this surgery, I had never broken a bone or needed any kind of major internal surgery.  When I woke up, I remember asking for my family.  The nurse told me that she would call them down soon-but first we needed to get my pain under control.  I actually think in my delirious state I even joked around about my dog Gibson.  I can’t recall the joke, but can only tell you that I think my gibberish had the nurse laughing.

It quickly went from jokes to internal pain and torture.  I can’t recall a lot, and I usually only remember things in flashes and they are in no particular order.  However, I do remember-quite vividly-when they pulled the drain tube out of my stomach and had to sew my stomach back up (all while I watched).  In conjunction with that, they also decided to change the bag for the first time at this point.  I was so freaked out by the fact that an organ, that is usually never seen by most of us, was now protruding out of my stomach and moving.  I cried at the sight of it and felt like an alien.  It was like something you’d see on a medical show or a horror film.  In that moment, I felt as if my life was one giant horror film.  I remember feeling extremely embarrassed, and thinking that if anyone knew-really knew- what I had gone through and that this was the outcome…no one would ever look at me the same.  My husband had seen me at my worst, but I was most embarrassed to have him see what his wife had become.  I would begin to make jokes that helped deal with my insecurities about having a stoma and the bag.  I’d say things to him like, “Don’t be jealous, just because I can do the dishes and take a poo.”  I constantly remind him that I’m always multitasking.  He found it humorous and although not everyday is laughs and butterflies with the stoma, this was how I communicated to him.  I would respond to some of his sarcastic jokes by saying, “I’m the perfect woman, I really don’t poo out of my butt.”  I think that’s an inside joke most girls will understand.  In front of our husbands/boyfriends/significant others we pretend for the first few months (while dating) that we don’t fart, poo, or do anything of the sort.  Obviously, we all know differently-however it’s a faรงade I know most woman try to maintain for as along as humanely possible.  I think people would be surprised to know that after the first surgery I did not go to the bathroom rectally.  Not a fart, not a poo-nothing.  It was as if nothing existed.  However, for a while I would get what we jpouchers call phantom poops…this is what happens when you feel like you should be going but you can’t.  You could sit there all day long, and still end up without any results at the end of the day.  But the sensation in your stomach makes you feel as if you need to go.  It’s a strange concept to imagine unless you’ve dealt with this yourself.

At this time last year I was just beginning to accept the snail as a part of my life.  It’s similar to being in a relationship. You’re unsure if you like the stoma or not-you know in your head that you kind of should…but you still find ways to complain about it.  The pain from the UC was gone but you just don’t know how to feel about this new invasion.  I was never fond of the stoma and I’m still not.  It’s annoying and has a mind of its own 100% of the time.  I have no control over when the bag will leak/break.  Or when I decide to change the bag if it will allow me to do so.  I’ve described changing the bag to a friend in this way-it’s like trying to play the game jenga and wipe your butt at the same time.

I remember the very first time the seal broke like it was yesterday.  I was sitting at the kitchen table, Josh was sitting to the left of me and my mom was pouring herself coffee.  The seal had broken-which now I can attribute to more than likely the swelling going down.  When you first have surgery your bloated and swollen, however as the days pass and you still have the same appliance on your body-and your body changes but the molds have already formed to you.  I think it’s important to remember this-for all you new ostomates reading this.  It could be nothing you’ve done, but your body changes and the appliance doesn’t always catch up.  Nonetheless, I was sitting at the kitchen table eating breakfast when I felt the seal come undone.  I was beyond petrified.  I’m so lucky that I had my mom and my husband both there to assist with the changing process.  I became so overwhelmed and nervous I nearly passed out (no joke).  I had to lay on the bathroom floor while together my mom and my husband tried their best to remember the order and the steps in which every part of the appliance belonged.  The first time the bag breaks its frustrating and you probably won’t be prepared but-it will happen-it will pass and it will be ok.  Easier said that done though.  As I laid on the bathroom floor, and they put all the pieces to the ostomy bag puzzle together, I felt embarrassed.  It was the first time I needed help at home and it just so happened to be Labor Day weekend when I got out of the hospital.  So, of course, that meant that the at home healthcare agency wasn’t able to come out to my house to assist with the changing of the first bag.  I got through it though, that’s what I remind myself of everyday.  I’ll get through it, this too will pass and it’s a mountain now but it’ll only be a grain of sand tomorrow.  In the moment, we all get frustrated with this lifestyle.  Changing the bag is the equivalent to a volcano.  No one can predict when a volcano is going to erupt, you can guess but you can’t be sure on the exact moment-well folks….having an ileostomy is the exact same thing. It’s unpredictable and at times it feels unmanageable.  However, during these moments of despair and defeat it’s important to remember that this too shall pass.

The message was clear…

I try not to dwell on the past but in order to understand me, this disease, and why I am the way I am today-living with part of my intestine protruding out of my body with a bag attached to my side-I have to share it.  On the days that I feel like crying, giving up, or hiding from the world…I write.  I write from the depths of my soul and I share my story to help other’s feel like they aren’t alone in this journey.  With that being said…this is the transition from Pomerado Hospital to going home.

By this point it was weeks of being told that once my platelet count was good, I could go home.  After a month and a half in Pomerado Hospital I was ready to leave.  However, my Doctors insisted that my platelet count had to be a certain number before I could be released.  Every morning, during morning rounds, I’d ask my numbers-and do my best to remember the answer by the time my mom and mother in law showed up.  Still on Dilaudid daily, mixed with Benadryl and other medicines, it was hard to recall a lot.  However, I remember the morning my Doctor came in and said that I could go home.  I was so excited to get home to my puppies and to be able to sleep in my own bed.  At this point I still had the picc line in my neck-and I remember my husband being the only brave soul in the room to stay and watch as they pulled this long tube that went in through my neck and was (for lack of better words) sticking into my heart.  It takes a lot to make a Marine weak in the knees..and twice now he’s had to endure the same displeasure of seeing his wife having long tubes pulled out of her.  Nonetheless, he didn’t faint and for his strength during a difficult time, I will always be grateful.  I remember when the tube was being removed, the Doctor asking me, “Do you want a picture of this…” and I couldn’t bring myself to look at the tube (approximately the length of my arm) long enough to get a picture.  Looking back now, I wish I had-but who knew I’d have such a long story to tell.

On the drive home from Pomerado Hospital, with my husband, I remember crying tears of happiness and sadness.  I was so happy to finally be out of the hospital, after being stuck there for so long. Everything seemed new, after a month and a half of pure hell…I was in the car and listening to the radio.  The world certainly didn’t stop because I was sick, and the new songs on the radio were music to my ears-literally.  It was the strangest feeling, but I remember getting into my car (the passenger seat) and just feeling the sunshine beam into the car as we drove home.  It felt amazing, with the sun glistening against my snow-white skin tone, I remember feeling free-finally free.  It was the little things that I took for granted before…like riding in the car…that now..felt entirely different to me.  I remember pivotal moments throughout my illness, the day I sat outside in the rain as my mom wheeled me around the parking lot while it sprinkled tiny rain droplets on my hospital gown, and the day I left Pomerado Hospital.  I remember the feeling of pure joy, that until then I’m not sure I experienced.  Pure joy, pure appreciation for life-my family and close friends.  It wasn’t a vacation (by any means).. but to me these different memories I have in and out of the hospital are some of the best memories and better than any vacation I have ever been on.

The sadness I felt was beyond words, but I’ll do my best to explain the unexplainable.  Imagine this, entering the hospital with hopes and high expectations that not only would my doctor fix what was wrong-but in turn make things all better.  I mean this is why they get paid the big bucks right?? This was not the case for me.  Not only was I told there was nothing else he could do, or offer me for pain relief, but now I was preparing myself mentally and physically for the next step.  When I left Pomerado Hospital, I already knew what was to come.  I already had an appointment with Dr. Sandborn (who came highly recommended from Dr. Lee).  I needed to prepare myself mentally as the inevitable was coming.  Through the process at Pomerado Hospital, and even into the first meeting with Dr. Sandborn-I had no idea that removing this diseased organ from my body would mean anything other than simply removing my colon.  However, it’s not that simple-and perhaps I was naรฏve, or perhaps I was in too much pain to understand all the options as they were presented to me over the past few months.  Either way, when Dr. Sandborn explained the process of removing my colon-I remember looking to my mom in shock.  With a look of fear and panic as if to say to her “their going to do what and put it where?”  As Dr. Sandborn suggested other drug therapies, which I quickly negated, the message was clear to him-surgery was MY only option and hope for relief.  Without any other solutions to offer-he provided the referral to see Dr. Sonia Ramamoorthy.

๐Ÿ’œ๐ŸŽ‰๐Ÿ’œ๐ŸŽ‰๐Ÿ’œ๐ŸŽ‰๐Ÿ’œ๐ŸŽ‰๐Ÿ’œ๐ŸŽ‰๐Ÿ’œ๐ŸŽ‰๐Ÿ’œ

Here’s a little video blog I decided to do in honor of my birthday today!  It’s not often I do my makeup or my hair these days so I figured why not.  I also want to say thank you to everyone for all of the birthday wishes!!  It means so much to me that everyone took the time out of their day to wish me a happy birthday!  Thank you all๐Ÿ˜˜

“Milkshake Renee” ๐Ÿฆ

The hardest part about recalling my memories for these blogs, is recalling what I feel I have suppressed subconsciously.  However, I have all these random memories-some of which (I think) are a funny blur.  Prior to my mom and mother in law arriving in California…I had this nurse that I had nicknamed “Milkshake Renee”.  I called her this because I had two nurses named Renee-so to keep them straight… I eventually nicknamed one Milkshake Renee and here’s why…..

One night, my husband was at the hospital with me and I asked him if he wouldn’t mind getting me a milkshake from Carl’s Jr.  I was feeling particularly good that night, Dilaudid was to blame, and by this point I had been in the hospital for a few weeks.  Therefore, the highlight of my day up until this point was the night nurses (as they are so much more relaxed and just overall nicer), my husbands arrival in the evening (as he was going to work and then coming to the hospital at night), and the drugs they were giving me to keep me pain free (aka IV  Dilaudid mixed with IV Benadryl).  Most certainly, the best part of my day was when I would have all three-a great night nurse, my husband close by, and my IV meds.  It was about 11:45 PM when I asked my husband if he would be a doll and go get me a milkshake.  He quickly agreed since Carl’s Jr. was right outside of the hospital’s enterance (and I think he was in the mood for a milkshake too), and since he agreed so readily I then picked up the phone and dialed my favorite nurse.  I remember thinking to myself, this is the least I can do from this hospital bed.  So when she answered her nurse phone I said, “Renee, my husband is going to get me a milkshake, would you like one also-my treat!”  Her response, after she giggled (as she must have been able to tell I was a little high on meds) was something like this, “I would love one, thank you-you’re such a sweetheart.”  I responded asking her what flavor she wanted and she replied quickly, “Chocolate!”

To be honest, I don’t remember much after that.  Except when I would talk about her I would refer to her as “milkshake Renee”…Not long after I was put into ICU.  Where the memories went from milkshakes and nice nurses to having restraints put on my hands and feet and being scolded to stay in bed.  The transition from happy to scared and feeling alone (although I know now that I had people around me) is quick and somewhat seamless in my memories.  If anyone is confused by the sequence of events with this blog, it’s because in my mind-this is the order.  I remember specific events not in sequential order-but I try my best to express the happiness, sadness, and how unbelievably scared I was and still am through most of this process.  My memories are a blur, but to my close friends and family that were (and still are) a part of this journey with me know the gruesome and horrific details of living life with ulcerative colitis and now a burning stoma.