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 na√Įve, 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.

ūüáļūüáł The Pinning Ceremony ūüáļūüáł

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” ūüć¶

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.

 

“Mommy…” ‚̧ԳŹ

It was when I started to call my husband “Mommy..”  that he broke down and called his mother.  Explaining to her, he was unsure if he’d ever be able to have a normal conversation with me again.  I can’t imagine how scared everyone was, but I can tell you that when my mom became aware of this she booked her flight along with my mother in law and they flew across the country immediately.  It was the bits and pieces of information my husband provided to each my mother and my mother in law and together they knew they had to be here- not only for me, but for my husband as well. 

 The first time I remember seeing my mom was when my left hand began to swell up.  Later I was told that I had a blood clot in my hand-and that no IV’s or blood pressure were to be taken/used with that arm.  In fact, there was a sign above my bed that said this-and I remember asking the Nurse, “Why is my left arm not to be used for anything?”  Her response, “I’m not sure let me look into it.”  Awesome right? But this was much later on…when I started to come back to reality.  The first time I truly remember seeing my mom and mother in law was when the doctor said, “We may have to cut her rings off.”  It is the only clear memory I have-because it was at this point that I thought there is absolutely no way you’re cutting any of my rings off.  I worked so hard to obain each and every one of them.  So, it was at this point that we began trying everything to get my rings off…we soaked my hand in ice water..and I still remember the pain of it.  Then my mom ran down to the gift shop to get windex as my husband continued to pull on my rings to get them off.  Lesson learned: NEVER go into a hospital with Jewelry on…and I haven’t since.  It was a hard and painful lesson learned.  

Thinking back now, I think I can recall different specs of time where I would see my mom and mother in law there…but at the time my brain didn’t correlate it all.  It wasn’t reality because it didn’t make sense in my web of scenarios.  I remember repeatedly saying to them all, through tears, I’m so glad your all here and I meant it.  Without the help of my husband, who undoubtedly had to make some of the hardest decisions of our lives, my mother who endured the pain of seeing me on the respirator and not knowing if I would live or die, and my mother in law who was the support we all needed and still do today-I’m not sure what would have been.  

One of the best memories I have with my mom and mother in law was the day we all sat outside and talked and listened to the rain.  The air was crisp and cool and it was truly a breath of fresh air for me.  It was a day of serenity and peace.  I was wheeled outside the front of the hosital, and we sat for hours.  I asked questions I didn’t  have the answers to-and we discussed what happened over the weeks I couldn’t recall.  This was also the day I learned my mom and mother in law can make friends anywhere.  As we sat there, I remember them chatting with different people.  One family, who’s baby was in the hospital and couldn’t leave yet.  Another woman who told us her granddaughter also had Ulcerative Colitis and died very young-about 22 years old.  The older woman, who’s grandaughter had passed, said her daughter only believed in the hoalistic way and that if her gradaughter had recieved treatment sooner things could have been different.  It was this woman, who spoke to us, using gods voice, that changed how I would forever look at my treatment going forward.

I felt at peace just sitting outside, and after hearing the old woman’s story we all agreed that for me to live with this pain was unacceptable and too dangerous.  To be outside of those white walls where I had been trapped for nearly a month with sickness after sickness and complications beyond anyone’s comprehension-including my own-it felt great to escape that day and just sit outside listen to the rain and talk.  I want both my mother and mother in law to know that today…on Mother’s Day…I truly appreciate both of them and all they have done for Josh and I.  It means the world to me to know I have such a great support system-thank you both from the bottom of my heart.  I love you both so much!

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My 1st Hospital stay- Pomerado ūüŹ•

As I checked into Pomerado Hospital on June 28, 2014 I had no idea what I was in for (and neither did my family for that matter).¬† I checked into the Emergency Room after an entire day of running to the bathroom.¬† I believe when I checked in I had gone to the bathroom approximately 12-15 times that day…and by that time all that was coming out was blood with immense pain.¬† After the normal ER questions, blood pressure and blood draw I was admitted into the Hospital.¬† Admittedly, I¬†can’t recall every detail of my¬†nearly two month Hospital stay-but I can recall most of it in bits and pieces.

After I was admitted we tried every drug possible (and by we I mean my GI doctor-Dr. Lee and I).  One of the last drugs I tried was called 6-MP or Mercaptopurine which is used to treat leukemia and is known as a chemo pill.  Ingesting this drug scared me more than anything, little did I know that taking Remicade would be what almost killed me.

I had my first Remicade infusion on July 7th and with little to no relief, my doctor assured me that after the second Remicade infusion¬†is when most people start to feel better.¬† So, slightly earlier than two weeks from the first Remicade infusion, on July 18th, I had my second Remicade Infusion.¬† It was at this point that I think I started to blank out quite a bit.¬† I do know that my Doctor’s colleague came in for morning rounds, as Dr. Lee was on Vacation that week, and when he yelled into the bathroom all I spoke was jiberish.¬† He then looked at my husband and said, “What did she say…” and my husband responded with “I have no idea.” ¬†I have no recollection of this…but it was then that my husband knew something was wrong.¬† At first, my husband was suspicious of a drug overdose…as I wasn’t making any sense and speaking in what he would refer to as “chipmunk” talk.¬† I was speaking fast but making no sense.¬† I would know where I was born, but not my birthdate.¬† It was as if my mind was battling for reality. ¬†I remember my friend Kelsey visiting me, but only later on when I was conscious and talking would I ask my family, “Did she dye her hair blonde?” ¬†Everyone was impressed that even in my state of anaphylactic shock I could recall such events. ¬†I also recalled things that were untrue…I could have sworn I had something taken from me and put on a plane.¬† Later I would realize that my peace of mind about the future was what would be taken.

I was diagnosed with TTP (Thrombotic Thrombocytopenic Purpura) by a kidney specialist approximately four days into the darkest time in my life-up to this point. ¬†For those of you who have no idea what TTP is-it’s an extremely rare blood disorder where the platelets form like spider webs and when red blood cells pass through it cuts them in half which caused small blood clots all throughout my body. ¬†As a result it looked as if I was having mini strokes (or so my mother would tell me later on). ¬†It took my bone marrow being affected, my liver and kidneys almost shutting down for someone to figure what was wrong. ¬†I almost died because TTP was not a listed side effect of the drug remicade.

It took a pic line in my neck and ten plateletpheresis treatments where everyday for three hours through the¬†pic line all the blood was drained from my body spun in a machine to take out all the bad platelets and replaced with donor platelets. ¬†So the next time you donate blood, plasma, or platelets think of me-it takes a lot of people to help one person. ¬†And if you’ve ever donated…maybe you saved my life!

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