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The message was clear…

Posted on by JER

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.

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“Milkshake Renee” 🍦

Posted on by JER

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…” ❤️

Posted on by JER

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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