Taking it One Bag at a Time

The hardest thing in the world is to learn to accept that you can’t change or control what happens to you.  Today, I’ve gained some good news–and although it’s not something I’m totally comfortable sharing with everyone today, I hope to eventually be able to share all that I’ve learned through the process of being sick.  I’ve learned that I have to be my best advocate for myself.  If I don’t think something is ok, I say so-especially when it comes to my medical care.  If I think I should have an IV in my arm versus my hand-I will say so.  Where as, in the beginning, I was more timid and unable to voice my thoughts for fear I wasn’t right. When it comes to your body and your life-whatever you think is best for you -is.  It took me many surgeries and years to come to this conclusion.

The Stress of living with this illness can be almost unbearable at times-I’ve said this before…I have to concentrate to concentrate.  It’s hard, this disease is one of the worst situations I’ve ever had to deal with.  There are days when I feel like I can do this, and then there are days when I know I can’t do it.

Lately, I’m struggling to keep weight on.  (I know, I know…poor me.)  But it’s not fun to have your clothes hang off of you–espeically when you like the clothes you own.  I’ve never known the struggle of being “thin” until I got sick.  Then I learned quickly, the grass isn’t always greener on the other side.  Even the smallest ostomy belt doesn’t fit because it’s pulled as tight as it will go-but it’s still not tight enough.  The struggle is real, and my real point is–the struggle is real for everyone.  Everyone has something, or many things they don’t like about themselves.  I’ve become extremely insecure with my body since gaining a bag.  I know most ostomates are proud and wear their bag as a symbolic badge for courage–and I commend every one of you who see it as a strength.  I unfortunately, see it as my weakness.  I’m not comfortable with it and it constantly feels foreign to me.  I’m not writing this as a “poor me” blog-but I’m writing this for everyone else who also hates their bag today.  It’s ok to hate it, and it’s ok to love it–and it’s even ok to have a love/hate relationship with it.  The bag saved us, but it also replaces a piece of us that could no longer manage to survivie in our bodies.  In a way, every day I mourn the loss of my colon and the representation of what it meant for me to have it.  Normalcy.  Having a colon is “normal”-so it would only make sense that having that creates a sense of normalcy.  On the flip side, I feel this is also why so many of us are desperate to pop any drug into our mouths that may even offer a slight chance of hope for normalcy.  The hardest thing is rembering and reminding oursleves everyday that we are a version of normal–our normal-but it’s taken me years to convince myself of this and I’m still working on it.

Along the way, through anal manometry testing, dilations, pokes and probes I’ve learned that no matter what curve ball life throws-I can do it.  I’ve had procedures that would make you squeemish at the thought, and I’ve been so close to death’s door that almost anything else seems trivial.  Yet somhow, I push through.  Sometimes it’s hour by hour and sometimes it’s day by day-but I keep pushing through.  I’m setting goals and achieving them, and I’m remembering the important things about life once again. Taking it one bag at a time, we get by with a little help from our ostomies.

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A Hair Milestone 💁🏻💇🏻

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.

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.

Happy Anniversary 🐌

They say a picture is worth a thousand words.  I tried my best to write a blog entry but was unsuccessful (multiple times).  You see when I share my story…it sometimes causes me mental distress to do it.  I relive the situations so others understand and become aware that this can happen to anyone at any time.  I also do it to avoid those awkward conversations that could frankly take hours for me to really tell you how I am or how I feel.  Today is the one year anniversary of my snail and although I get mad at it often…and hate the pain it causes me on a daily basis it has saved my life more than once.  I couldn’t write a long blog this time..because my tears got in the way.  I usually try to only post positive, upbeat and heartfelt blog posts. However, the truth is…I’m sad, mad, grateful, and beyond blessed today.  Thank you to all my friends and family who help remind me everyday that I’m still me.  I’m a wife, a daughter, a granddaughter, a sister, a cousin, a niece, a daughter-in-law, a best friend, a friend, and someday I hope to be an inspiration to others.

Picking “The Snail” Spot 🐌

As I sit here, in an itchy and uncomfortable amount of pain I wonder what a day would be like without any pain or discomfort.  Those days are a faint memory to me and I complain less and less because I don’t want to appear as weak-when truly I am emotionally and mentally the STRONGEST person I know.  I know, I know..sounds a bit boastful right?!  When you’ve endured seven surgeries to date and live in a constant state of skin burning and irritation-then you can judge.  I won’t go on about the pain, but here’s a comparison for you all.  Ever taken tall socks off after a long day, and when you take those socks off you can see the indentation mark from the socks…and it begins to almost itch from the restriction all day.  That’s what it’s like wearing a bag with an ostomy belt 24/7.  Except you can’t take the bag off, but for short periods of time.  Welcome to my itching, burning, painful hell with what I have referred to as “the snail”–which mostly is because it is constantly moving.

The entire day and night before my very first surgery, I was beyond sick.  Everyone who knows about colonoscopies understands you have to take, what I refer to as “colon blow”–the name speaks for itself.  At this point I weighed about 117 pounds and I was weak from my two months in ICU and the Remicade reaction.  From the time I got out of the hospital to the day before my surgery, anything I ate would go right through me-literally.  So, when it came time to take the colon blow…there wasn’t much left to blow.  However, my mother insisted that I try to drink some of it.  I also was given an antibiotic to take with the colon blow-which created the perfect storm within my body.  I was a mess, I was puking and sicker than sick (as if that was even possible).  I have never been able to drink that stuff and by this point it was my third round of bowel prep in just five months. I truly hope they develop some kind of alternative that tastes way better for you future Crohns and Colitis patients, because this stuff is no joke.  It tastes absolutely terrible going in and it’s equally as terrible coming out (via vomit or otherwise).  Even writing this now, and thinking back to that last day of taking the colon blow, my throat clenches and my stomach does a flip or two.  If you’ve never experienced it, consider yourselves extremely lucky!

I didn’t have a lot of choices, as my previous blogs stated…it was lose the colon or live with the excruciating pain.  Obviously a no brainer for me, but even the most certain person has doubts.  I had doubts up until the night before, when the nerves started to set in that tomorrow I would lose my colon.  At this point my nerves set in and began to overwhelm my stomach.  I remember sitting on the toilet (as if I had anything left in me-which I did not) and my colon was spasming.  Colonic spasms are extremely painful and are known to be brought on by internal stress.  Which, no doubt, I was having the night before the biggest surgery of my life.  So as I’m sitting on the toilet, not going, but in excruciating amounts of pain-my mom came in the bathroom.  By this time I was in tears and I remember her words to me like it was yesterday, “Jerica, after tomorrow you’ll never have deal with this much pain again.”  I took those words to heart, and replay them over and over in my head even today.  Weather it was the truth or not, it was what I needed to hear in that moment.  Also in that moment, Gibson (my little Morkie puppy) who is no doubt the light of my life…came strolling into the bathroom with his little blue blanket attached to his bum!  He could tell I was upset, and he too, knew I needed his little personality to make me laugh and temporarily forget about the pain.

The next morning I woke up, and tried my best to mentally prepare myself for what was to come.  There’s no words to describe the fear I felt.  There just is not.  I knew things would change and I hoped for the better.  I knew I’d have challenges ahead of me and that life would be different going forward.  Very little people knew the details of the surgery I was going to undergo-and in the beginning I didn’t want anyone to know anything.  In a way, I looked at it like this, the people who needed to know did and everyone else could wait.

As I laid in the hospital bed, waiting for the stoma nurse to come in and draw the spot where “the snail” would make it’s debut I became very nervous.  I remember the nurse asking me where I would like the stoma to be.  I had no idea that the spot I chose would be there for nearly two years-but I pointed and said how about here.  I mean did it really matter?  At the end of the day, a scar is a scar and it wouldn’t make a difference to me.  She could tell I was nervous and said that sometimes people name their stoma’s-I immediately thought that was insanely weird but smiled and said, “Oh, really?”  I think it’s odd that we name our stoma’s…but I understand why people do.  I suppose that’s why I gave mine the name “the snail”…it’s weird looking…it moves and is almost always slimy.  Thinking back to that awkward conversation with Denise (my stoma nurse), I’m sure she was trying her best to make me feel confident and comfortable with my decision.  Nonetheless, it was a huge decision I was making and I don’t think anything or anyone could have made me feel at ease.

Even today, almost a year later as I’m writing this, the thoughts that come flooding back to me are those of fear and uncertainty.  I often cry when I have to relive these memories-but I do this to help others.  I think about what other’s want to read, what they need to hear, and what the world needs to know about me.  I have a unique case, and I have from the beginning.  I never intended to share my story with the world, and most certainly didn’t expect to write about my story for all of social media to read and experience.  I had no idea how long this road would be.  And still today, I don’t know where the road leads.  It’s as if I’m walking without a map, without an end in sight.  Each step seems like a mile and I’m thirsty for answers.

We all endure pain…but in the end-it is how we handle that pain which builds our character…

I often feel as if I’m stuck in a body I no longer recognize.  It’s as if my insides are winning, and my body’s appearance on the outside now displays all the damage from Ulcerative Colitis.   Whoever said this was an invisible illness was wrong.  If you have Ulcerative Colitis and live with the pain on the inside and behind closed doors, eventually your outside appearance will reflect what your insides are yelling at you.  The pain will ultimately wear you down so much, beating every last ounce of energy you had, until there isn’t any other options left but to choose the inevitable.  We all suffer in silence and deal with the embarrassment and daily struggles of living every single day.  What happens when you realize you have nothing left and no other choice-you fight some more.

The weeks after getting out of the hospital I remember feeling the withdrawal of the pain medicine, and being extremely sick and fatigued-to say the least.  It was a hard transition, as I was still taking meds for not only the pain, but also for the C-diff I had acquired while in the hospital.  I was sent home with a bunch of medicines and also a limited amount of pain medicines, as Toxic Megacolon (TM) was also a worry for my doctors.  I remember being warned repeatedly, while in the hospital, that if I asked for too many pain medicines that TM was a likely possibility.  Obviously, the pain far surpassed anything I could tolerate, and without much thought I continued to take the pain medication.   I took Dilaudid in the hospital and Hydrocodone when I got home.  After being on the pain medicines for so long, my body became used to having those drugs, and I experienced what I would later realize was a withdrawal.  I remember laying on the couch tossing and turning and feeling as if I was going to puke.  I did a few times, and it took days of feeling not well to feel “better” again.  That feeling of unbearable pain mixed with prednisone, and about half a dozen other medications didn’t help much during the withdrawal process.

I remember being at home and feeling absolutely miserable, everything was getting to me, and unfortunately for my family-no one was safe.  Life wasn’t fun for several weeks, and continued even beyond when I began to deal with the trauma of losing my colon.  It was an emotional roller coaster, to say the least.   I was lucky enough to have had my family around during such a difficult time, and it was a hard process.  A decision I had to make that wasn’t easy.  In my mind, I had exhausted all of my options.  I had tried the holistic route, I tried the medical marijuana route, and I had tried every drug imaginable.  After my Remicade ordeal, I was no longer a desirable candidate for Humira or Imuran nor was I brave enough to experiment with the drug Entyvio that was approved by the FDA in May 2014.  The road was narrowing with less and less options and the only path left, or so it seemed, was the road that would lead to the removal of the diseased colon from my body.

During my first meeting with my surgeon Dr. Ramamaoorthy (in mid August-2014), she explained everything and it all sounded relatively routine.  She explained the three step surgery to me in relatively simple terms.  Step one, go in cut out the diseased organ (colon) and create the stoma.  Step two (three months later) go in and create the “J Pouch” while rearranging my insides completely-in conjunction with tacking up my fallopian tubes out of the way (as to not create more scar tissue and keep them out of the way of the J Pouch).  Step three (3 months later) the final surgery and “the takedown” of the stoma and the reconnection of my stoma back on the inside.  It all sounded simple, straight forward, and as I mentioned earlier, routine.  However, I should have known I would be the extraordinary case that wouldn’t go as planned.  From the beginning of this entire diagnosis of Ulcerative Colitis I have been given a hard time-from the Doctor’s misdiagnosis, to the lack of proper medical treatment at Balboa Naval Hospital, to my stay at Pomerado Hospital that, certainly did not go as planned.  It took me awhile to understand the process and what would be happening to me.  In fact, I feel like I was in such a whirlwind of pain and anticipation that I couldn’t even recall what she said to me-lucky for me…my family was right there to remind me.

I can’t describe the pain well enough to help any of you who don’t have UC understand what it’s like.  All of my life, I’ve eaten whatever I wanted…without much consequence- be it weight or anything else…and now I could only eat bland food.  As everyone’s suggestions were taken under advisement-the message my body was giving me was clear…there wasn’t anything I could eat and no magical recipe of foods that would make the pain stop.  Coffee, my love for coffee, was a distant memory in the weeks leading up to my first surgery.  So on top of the physical pain, and the continuous embarrassment, was the daily emotional stress of figuring out what to eat and when to eat it.  If I had to leave the house (for a doctor’s appointment), I would refuse to eat anything several hours before and while I was out of the house for fear of an accident.  At times I considered starving myself, hoping that would help my colon relax and feel better.  Emotionally, I was a wreck.  I was angry, sad, fearful, hopeful—but angry.  The prednisone didn’t help my anger (that’s for sure).  Everyone in the world can think they understand…but until you’re walking in the shoes of someone who has UC…you have no idea the pain we’re enduring.  Depression usually follows a diagnosis of UC (and I wasn’t the exception).  You realize that a part of your life is over; the part where you can eat and not worry-have a drink and not worry…or do anything and not worry.  Car rides became scary, and even trips to Target became scary (as it’s a huge and overwhelming store).  Anywhere I went, where I didn’t know if there would be a public restroom close by would send me into an anxiety filled panic.  There’s a saying, “You know you have UC when you choose where to shop and eat based on their public restrooms.”  This was how I lived my life for 8 months before I realized, this wasn’t the kind of life I wanted to live.

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 naïve, 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.

🇺🇸 The Pinning Ceremony 🇺🇸

One of the proudest moments for a military wife is when she is asked by her husband to pin him to the next rank. I barely remember Josh coming in to tell me (when he found out for sure) that he would be pinned on August 1, 2014 for Sergeant.  I was so happy for him-in fact I remember asking Dr. Lee weeks prior, “Do you think I’ll be out of the hospital by August-I have to pin my husband he’s going to be promoted.”  Looking back now, his response was always the same, “Let’s try for then, we will see though.”  I now realize that this was his very gentle way of saying, “probably not.”  Nonetheless,  I was beyond proud of my husband.  I wanted to attend that pinning ceremony on base more than anything!  That’s what kept me going was having things to look forward to.  Unfortunately, I missed two important events in both my best friend, Andrea, and my husband’s lives.  I had been waiting years to be Andrea’s matron of honor and I waited even longer to pin my husband to the rank of Sergeant.  These were huge milestones for both of them-and ulcerative colitis took both of those special days away from me.  For that, I will always be both sad and upset that I wasn’t there to partake in their special events.

I remember when my mom, my mother in law and Josh came to the hospital and told me that we would have our very own pinning ceremony in the hospital for Josh.  I was determined to pin my husband to the next rank, in a way-I earned it too.  Some wives will say you should never wear your husbands rank and I agree-but when you stay with you husband from the rank of Private all the way up through–there’s something to be said for that.  It was a happy time for us both, and I was excited and nervous for my husband’s co-workers/friends/fellow marines to see me in the state I was in.  Unfortunately, from the plateletpheresis treatments along with my body enduring so much trauma in such a short period of time, everyone was able to look into my eyes and see the pain-literally.  It was an odd vision, I’ll admit, but it was scary to look into the mirror-even for me. How could I expect anyone else to be able to look at me without wincing.  From what I remember of the pinning ceremony that we held in Pomerado Hospital for Josh, no one looked at me strangely.  They all had this open warm heart that wasn’t judgmental, however I remember not being able to look anyone in the eyes.  I didn’t want to scare anyone and I also requested that no pictures be taken.  I didn’t want anyone being able to look at me later on, nor did I really want to necessarily remember that I wasn’t able to pin my husband on base in front of his command and superiors in that patriotic outfit I had envisioned in my head.

Instead, I wore this very cute leopard print ensemble my mother had put together for me.  With all the IV’s that were in my arms and neck it was hard to wear anything other than a hospital gown.  However, my mom had purchased this leopard print dress and matching flip flops-an outfit I will never forget.  It was beyond sweet, and only aided in creating a memorable evening.

Our mothers and friends did a great makeshift pinning ceremony for us though-I remember being so highly medicated that when I went to pin Josh I actually put it on upside down.  Newhouse quietly whispered to me, “It’s upside down.”  I remember snapping back into the reality of what I was doing at that moment and nervously giggled-as I think prior I was in a fog of pain medicine and uncertain feelings.  Although everyone was supposed to be staring at Josh, in that moment, I could feel all eyes on me.  Ethan Newhouse, Katie and Greg Hartig along with Diane and Alec Stoddard and their son stood around us as I pinned my husband.  Without the help and support of our military family members as well as our mothers, I wouldn’t have the wonderful memory of pinning my husband.  I will always be grateful and feel blessed that as my illness grew worse I had the support of other military families along the way.


  

What remicade did to me..and the result was TTP

Please watch the video of myself in the hospital and take it as a warning of not only what Remicade can do-but how different drugs can severely affect you.  When you have a weakened immune system, the chances are significantly higher that some of these drugs can negatively affect a person.  I read all the time that people are going to try this drug or that one-but seriously…do your research and know all your options.  Doctors aren’t fortune tellers and they can’t predict how your body could react.  They can give you the options at hand,but it’s up to you to decide if the benefit outweighs the risk.

This will be hard for some of you to watch-and I am forever grateful to my husband for taking these videos. Without them, I don’t think I would truly understand what happened to me.  I am told stories but until I saw it with my own eyes-I don’t think I could have ever realized how bad things really were.  When your sick, really really sick-you don’t remember the details.  You remember the last memory and the first one if/when you’re lucky enough to return to a somewhat normal state of mind.  When you watch this video I want you to notice the “moon face”…which was a result of being on the drug Prednisone for so long.  A picture is with a thousand words-but a video speaks for itself.

“Milkshake Renee” 🍦

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.