The Ugly Side of Living with Severe Medical Issues – A Good Day At the End

img_9364These last few weeks have made me realize the ugly side of severe illnesses. Generally, it is extremely hard to keep up with people who are “healthy.” Early this month, I had a full blown migraine that came out of nowhere. I usually have some sign that a migraine is coming on, but this time nothing.  I ended up having to leave my psychologists office early and as soon as I got to my car – it hit with a vengeance.  Luckily, I went shopping earlier and had a plastic bag or I would of had to dispose of the car.  You can imagine why.

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Jocelyn and Alexis

These health episodes love to act up when I am finally living and doing normal things. It always seems like it punishes me when I attempt to have a “normal life”.   My sister, Jocelyn, had her bachelorette weekend in Southern California; I was so frustrated because I wear out so much faster than everyone else. My sisters have had to sacrifice a lot growing up.  So, when I get sick when it’s supposed to be about them, I get so mad. I know its outside my control but it is also so frustrating.

This blog is about my life journey and how to deal with being a young adult with complex diseases. It is truly an unpaved road and we haven’t been able to figure out how to make it easier for anyone involved – so I am going to be honest. My sisters and I have had a rocky relationship for a long time and although we know that this is something none of us could control or desire, my health is the big reason why we don’t have the relationship we wish we could. When my health flares up, it stops not just my life but my sisters, my parents and now Jake. It has been hard for them to understand my relationship with my parents because its completely different from theirs.

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Unswollen / New Med Swollen

There is no surprise that the last three to five years hasn’t been normal or easy for us. My health has taken many turns and with that comes a lot of pain and changes. I recently asked my middle sister, Alexis, who is only 13 months apart why she gets frustrated at me so easily. Her response was that it wasn’t me, it was the situation and how I act when my parents are around. She isn’t wrong about how my relationships with my parents.  But, she also doesn’t understand that going through this everyday for years with my parents changed our relationship.

My parents weren’t just my parents, they have become my caregivers, my psychologists, my best friends, my links to life! It had to be this way in order to have survived.  This  because what people forget is the mental torture of being so close to death over and over again. Alexis understood because I explained to her that it was the same for my mom and dad. We are not a perfect family; however, if you know us, we are a very strong and loving one

The statistics state that most parents who have a “sick child” are very unlikely to img_9435stay together because of the constant stress and continual challenges. I am very proud to say that my parents just celebrated their 34th wedding anniversary. It also marked another milestone:  they were able to go on vacation for a week out of the country. Since my health started going downhill, they have not been able to do normal “married” things for a long time – like vacations. They had to put them aside in order to take care of me. I have big guilt that my health affects the people I love the most. I would do anything to not let it affect them, but we are a family.

Me and Kathleen

It was very overwhelming when they went to Cancun and left Jacob and I to watch over the house and animals while I was fighting C diff for the 11th time. Our dog Bella has massive anxiety and isn’t allowed to be with other animals because she behaves poorly and we have to separate them.

Regardless, I am happy to announce that they were finally able to focus on their marriage and still have the strongest relationship of any couple I know. Their love is unbreakable and shows us how families are supposed to be.

img_9329P.S. My sister, Jocelyn, was married last Saturday evening. Although, it was at a high elevation for me and a nonstop weekend, I was still “healthy” enough to attend and witness her marry her best friend. It  took every ounce of me not to drop on her wedding day. Yes, this is our reality, and of course I am frustrated when my health doesn’t corporate.  In order to survive, I have to constantly alter my life.

I missed the cutting of the cake and most of the reception because I needed to get an oxygen break or I wouldn’t of lasted. Many frustrations come to my mind with my health during her day, including medicine that made my weight blow up. I know is superficial and I am grateful I was even there, but for once I just wanted that day to be perfect for her, so I pasted a smile on my face.  Instead of focusing on what my body was doing without being able to change it, I focused on her.

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Princess Bride

That day was the day she dreamt of since she was five and she looked every bit the princess.  Yes, I was swollen and it was harder to breathe and I had no energy; however, she had a perfect day.  Our lives are relentlessly difficult because of my health, but we are a family and we will not let my health tear us apart.