My Normal; it’s Not Your Normal

What is your definition of normal? Would you like mine? Well, mine is not going directly to college and getting a BS, BA, MS, MA, MS, PH.D, or any other degree. What about working a full time job? Well, that used to be my new normal, In fact its still my sisters normal, but for me, it’s far from my normal.

Don’t get me wrong, I grew up in a household with two college graduates, One went to Law school. I was taught as far as I remember that you needed to get a College education to make it in this world. This was constantly reinforced through high school. Both my older sisters graduated. One obtained her teaching credential after high school.  The other received her BS in Business at UCI. My path was different.  I was accepted to Fresno State University following graduation from high school.  I accepted; but my normal had other plans.

I know I’ve written this before, but I never thought I’d be a sicker adult than I was a child.  I was dead wrong. I was only able to be on campus at Fresno State one semester before I was forced to resign. I than applied and successfully was enrolled with Arizona State University online. Unfortunately, both times, my normal forced different plans.  My normal was a series of stacked medical issues, hospitalizations, medicines and all the related issues.  It has now been five years and I only have 3 semesters.  At this rate, my normal will be graduation in 2100 or so.

ASU was amazing, extremely helpful and eager to help me to be successful. Unfortunately, my health decided to once again interfere with the normal life. When I became sick in January 2013, I had no idea that it would literally turn my life upside down. Yes, I was overdosed with steroids, suffered steroid toxicity and severe Cushings syndrone.  I also developed secondary diseases, some temporary and some permanent damage from that, but I never thought it would change my path forever.

It made me realize that the cookie cutter path that many “healthy” people travel  will never be the path that I would follow.  I call it my “NEW NORMAl.” Trust me, I would love to work full time and provide for my future family.  Physically, I can’t.  I was raised to be self sufficient and contribute to society.  I will always try to do so – if my new normal lets me. I grew up being taught that you need to contribute to society; work, volunteer, be a good person . . .

This morning I woke up at 3 a.m. while receiving my every 3-week IVIG infusion.  C.Diff. was back, severe nausea and the other nastier side effect.  Once again, my new normal struck.  This week began incredible, I started to see a personal trainer and had my 3rd appointment with him.  Things were looking up, I felt stronger, encouraged and maybe was doing something regular normal.  But my new normal had other plans. The truth is that being a chronically sick adult is hard; it upsets the best laid plans over and over and over again.

Sick adults are treated very different than sick children; many think we are a burden on society.  We didn’t ask for it,  we didn’t cause it, it just is. I wish I was like my sisters and other family members. Sometimes I feel like they got the great end of the stick – the one with the candy on it.  I got the other end, just a stick and it kept hitting me over and over and over again. I wish that my health wouldn’t be this unpredictable.  Its hard to explain to someone who doesn’t know what its like, but thankfully my parents get it.

When I was 18, I was super sick. I would sleep 20 hours or more a day was even too weak to walk to the bathroom. We went from doctor to doctor, but no one had any answers to why I became so much sicker. This also took a toll on my family. I know everyone was on edge and about to snap and snapped. It even got to the point that my sisters were convinced after seeing the stress this was doing to everyone, that I was faking it. That went on for about a month, I was angry, sad and most of all – hurt. No one knows how much it actually sucks unless you walk a second in my shoes, my normal, not theirs.   This search led to great news, not, a new diagnosis of a rare immunodeficiency disease and in fact I was about a month away from death if I wasn’t treated.

This is the thing, no one can truly believe that someone can be this sick, this look and over and over again that we must be faking it.  I’m sick of the dirty looks and people yelling at me when I use my handicap plaque because I don’t fit the mold of what they think a disabled person should look like. I am sick of getting asked, “so when will you finish school or get a job.” My answer is simple, when I am able too.  I wake up fighting for my life everyday and if if the most I did today was go to the pharmacy, pick up my meds, and breathe – I would consider that a win. Some weeks like this, I did 2 personal training sessions and thought, wow, I’m normal, and not my normal.  My new normal reminded me last night that I’m not.

This is my life. I got dealt a crappy hand and I am doing my best to live in a world not made for us. I am blessed to work with a nonprofit that helps medically fragile children and their families with various type of financial assistance.  I speak on compassionate and palliative care.  I blog, sometimes, with the hope that my experiences help others.  I might not be back in school yet, but I will. My goal is to continue my education one day when my health will allow me too.   In the meantime I will continue to be an advocate for those whose normal is not your normal.

 

New or Next Chapter

A New Chapter – Tillium Kids, Inc. (www.trilliumkids.org)

Hello friends, I am very excited to share that I was asked to be on the board of Trillium Kids, Inc., a non-profit that provides support for families with medically fragile children. My official title is Creative Marketing Designer. I will be responsible for marketing on social media and fundraising. I would like to thank my Concurrent Care physician, Dr. David Sine, M.D., for this opportunity.

This is what I think is my purpose, I am supposed to help raise awareness for us “-1%ers.” I say us “-1%ers” because we are the rarest of rare patients, we aren’t just affected by 1 severe or rare disease, we are affect by multiple. I have been fighting rare diseases since birth and the fight continues today. I am extremely lucky to have my parents who were always by my side while sick. I was never left alone. I remember waking up after my 4th open-heart surgery and although my parents weren’t there, my grandparents were right next to me looking over me.

I grew up in a household with both parents working. When I got sick, I realized that I might not be able to work because my health makes me inconsistently available. Most children and teenagers don’t think much about the future. Due to my diseases, it was always first and foremost; it required me to grow up in many ways faster. Each decision required thoughts on medications, nearest medical care, elevation, risk factors and timing.

I knew wanted to work as it gives one purposes; the frustrating part was my inability to do so on a regular basis. Also, having rare diseases is expensive. I knew I couldn’t be permanently dependent on my parents. However, after getting sick 3 years ago, It became clear that I will not have a job with normal hours. I decided to stop school (well my health forced me too) but I was incredibly disappointed. Another dream lost.

After Jake and I met, I freaked out because I wanted to marry him but I knew I wanted to give something to the relationship. I needed to feel like I was doing something for myself. I started to blog and speech to tell my story. Now I have expanded this to Trillium Kids, Inc. and the Compassionate Care Coalition. I will soon begin lecturing medical professionals on the proper behavioral management of the chronically ill. I think I have found my purpose. Thank you Dr. Sine, Jake and my family for believing in me.

Please following on Facebook (Trillium Kids, Inc.) and Instagram (Trillium Kids)

tilliumkids.org – Donate Today

Everything REALLY Does Happen For A Reason!

Everything Really Does Happen for a Reason.

I am sorry I have not done a blog post in months; things have been a little crazy, but extremely exciting.

I’m so happy to announce that Jake asked me to be his wife.  It was a complete and utter surprise that I would ever be asked. Most don’t know the story of how Jake and I met, so I am now going to tell all!

Three years ago I got sicker than ever before when they used heavy and multiple steroids to “help my lungs.” That decision was never mine and I will be carrying around that mistake the rest of my life. I was fighting for my life and just got out of a very toxic relationship that was 3-years on and off before I was admitted to the ICU at Valley Childrens. There I was very drugged up and barely remember anything except for looking over to the couch from my hospital bed and always seeing my dad. My dad spent every single night with me and that’s when I realized that I am okay to be single because no one can measure up to my dad. I also couldn’t imagine finding anyone willing to chose this life.

Being told constantly by the person I was in the toxic relationship with, that I wouldn’t find anyone who would be willing to be with someone as sick as me, I started to believe that he was right. It wasn’t until I became so sick and had to think about the possibility that, yes, I might not make it out of the hospital, that I had to create a new outlook on my life and my own worth.

I vowed that I would no longer settle, I couldn’t. I realized that I had to change my mind set from: “I couldn’t live without him” to, “I need to live without him to save myself.”  It also helped that my dad is the strongest most loving man I have ever known in my entire life. He has been by my side since day one and never cared that he might lose me, he loves unconditionally and has never left when things get hard. For the next 3 years, I kept to myself and fighting for my life every single day.  I was content with the realization that I might be single forever and as much as I wanted to find love.  I was not willing to sacrifice or settle for anything less, so thats when I realized, I will be okay being by myself.

It was last year in December when my friend told me to go on Tinder. . .   If you know my sisters who are extremely overbearing, it was a short matter of time till they told my parents. Now many people hear this and think. . .  YOU ARE 23 and can do whatever you want.  However, my family has been the only consistent thing in my life and I know I wouldn’t be alive today without them so their opinion is very important to me.

I came home one night and my dad and I were in the lounge talking and he looked at me and said, “Rachael get off tinder.” I was shocked and I told him that meeting people when your sick and you rarely go out is hard and I would just like to meet people and just date. Get back out there is what I meant.  I was completely shocked when he suggested I try match.com. I told him that I doubt I will ever find the one, but getting out is what I need. That night, that was it, and I was on Match. Being me, I put on my profile stuff about my health because its not fair to hold back the most important aspect of your life and I am proud of what I overcame.   I got some hits, but I kept seeing a profile ad I couldn’t take my eyes off, so I messaged him. My first Match date was set 3 days later and I was off Match thereafter.

December 12, 2015, was Jacob and my first date. He is from Tulare, which is about an hour away from Fresno. The night of our first date I got in a huge argument with my mom because I wasn’t dressed enough for the restaurant he made reservations.  I didn’t know how nice it was.  I wanted to be comfortable and I was so nervous  after my mom’s comment.  I was abut to cancel until my mom reminded me that he drove all this way to meet me and take me to one of the nicest restaurants in Fresno. I am always a little late and that night was no exception.

I drove to the restaurant with puffy eyes from crying and when I walked up to him everything negative I was feeling about myself disappeared. We ended up talking and barely eating because we couldn’t stop talking and getting to know each other and I didn’t want the date to end and I knew he loved Christmas lights as much I do.  So I suggested to him lets go get hot cocoa and go look at lights. It turns out that we think much alike. He was already planning on that exact thing after dinner.

I think that Jake and I realized how similar we both were and when I went to hold his hand it was so sweaty that I pulled away but the best part was that I found that I fell hard for him.

After he kissed me three times and that was it! I knew that I would be seeing a lot more of him. I came home to my dad and talked to him as if he was a girlfriend and told him all about the date. It felt different and then I got a text from Jake saying thank you and if I would like to go with him to a house in Tulare that decorated their house Grinch themed. I ended up not feeling well the next night but he could care less and we rescheduled for the next night. I was never expecting to meet his family so soon because I made a promise to myself that I would not introduce him to mine until we got to know each other.  Thus, it was huge that he wanted his parents to meet me that night. Unfortunately his dad, Ronald, had the flu and already Jake already aware that I couldn’t be around anyone sick, made other plans.  I got to meet his mom, Kathy.  That night we watched Investigate Discovery, I knew that this family was perfect. I realized that I found the one. I will actually be loved for the first time and I didn’t have to be alone to be happy.

It was very hard to let Jake in my “medical world.”   This was not because I doubted him, but  I didn’t want him to have to deal with it. We ended up celebrating our first month together in the ICU because I got sick with a central line infection and emergent surgery. He was by my side every second even though he had work full time and school; also, he would have to drive an 1hr and 30mins each way.  I was always told that I would probably not be able to fight off a central line infection if I got one because of my immune system.

Jake comforted me and he began to knock my walls down. I didn’t understand why he would want this in his life. He stayed, he learned and even when I stayed at his house once over night due to the fog, I forgot to do my infusion to help fight my CLABSI and he woke me up quietly and did my infusion for me. I was already deep in love with this man, but everyday my love for him grew stronger and stronger.

Jake supports me through everything and doesn’t care that I am this sick except for how it makes me feel and also that I am not able to have biological kids. He has become my rock and my dad has never trusted anyone to take care of me the way my dad does with Jake.  That is why when Jake asked my dad for my hand in marriage my dad shed a few tears and said yes, even though we had only been dating for 9 1/2 months. I trust my dad and respect him more than anyone and he will randomly look at me and say how much he loves Jake and how comfortable he is that I will be with him forever.

We have a love I never thought I deserved because of my health. Jacob has made me love myself and love my journey. He has completely changed my entire outlook on life and my opinion on being alone. He has made me stronger and happier than I ever had been and that has made my family and I closer and have a much better relationship. He told me that he would never stay at our house or work at the hospital and less than 6 months later he is working at the hospital and was welcomed in. He found his calling and absolutely loves being in the medical world. They say that you will marry someone like your dad and I know that I am. He has the biggest heart and wants to help and understand my health.

I never thought I would meet anyone, nor picture a “dream” wedding like most do.  I was lost, My sister got married a week before I got engaged so my mom is helping me. When I tell you that I literally never imagined anyone who would love me despite my health, I mean it! I am so lucky to have found my best friend. I realized that I am not less worthy because I have diseases that I never could escape from.

Our relationship has given me a new prospective on chronically sick patients. We have had to fight to survive and know that not everyone is as lucky as us. My life is  more than my disease and just because my health is unpredictable doesn’t mean I cant have love. I think and now know, it will just take a strong person to come in my life and stay. I needed someone who never gives up.  I am so happy and look forward to what our future holds.  Finally, I couldn’t imagine settling for someone who gives up when life gets hard and I know Jake won’t.