“Mommy…” ❤️

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 🏥

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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