Life With PH

Perfectly Positive


It’s kind of shocking to see how positive people haven’t been about things lately. Lets face it… we have a terminal, incurable disease and believe me I totally grasp that. I also understand the concept of things not going well, depression and non-acceptance. I had a pretty flaming case of that seeing as how I tried to stop my treatment because I felt as though I needed to die. I completely see how awful things can get and how low it may bring us. But when you refuse to sit there and NOT look up is when this attitude becomes a problem. Very often I write about the mental side to this disease because it is in fact the most ignored and the most important part. You can’t just pop a pill and make it go away, it’s a daily thing you have to work on to keep yourself from sliding back down into the dark side. I didn’t just get happy about this disease one day, it was definitely a process. So I began to look back on my decisions and what exactly I did that broke the barriers to this mental battle. I’m ready to see some happiness!


When your crowd consists of nothing but negativity, you’re bound to get sucked in. You become what your friends are, seriously. I don’t see how people choose the friends they do and expect the best out of that situation. Friends are quite literally the family that you choose. Don’t screw it up. When it comes to family, it gets a little tricky. You can’t just banish them away forever, however you can remove yourself or relax the relationship even by not being in the same room. Thats all it takes. Simple separation. Closely evaluate your peers and family and what energy they release.


I’m not saying your personal relationship is a wreck, but maybe you need a double take to make sure it isn’t. A romantic relationship is with someone you can trust, fall back onto for support, love and cherish. Telling someone you have a rare disease is a huge earthquake that shakes their entire world for a moment…or week. Sometimes people just can’t accept it and we shouldnt be shocked by that because it IS a commitment to marry or take care of people like us. The right person will not see the disease, but you. I dated someone who only saw my disease and how it affected HIM. Not how much it was breaking me, so he judged me for exactly that. He didn’t care about who I was, he was worried about who he couldn’t mold me into. When should you tell them you have a disease? Well lets not wait six months down the road, but maybe the second date in a extremely casual manner that somehow relates to the topic. He/she flips or acts distant? Well honey, you obviously don’t need to worry about your outfit for the third date.


When you do nothing but sit on the couch and watch other people live their lives instead of living yours, that can make for a pretty sad life! I really don’t care what you’re doing (except drugs, just no drugs) but get out and do SOMETHING. Anyone who knows me (like really knows me) has the idea that I don’t sit at home. I am shopping, at the farmers market, taking a walk, getting tattoo’s or at the pool. I don’t sit and give myself time to ponder on the things I might not like about myself. Psh, aint nobody got time for that.


Oh I just love this one!! So if I’m ever at my home and actually awake, I’m always being crafty. It’s so much fun! Painting, drawing, re-doing furniture or rooms in general…HELLO! You have an entire website (pinterest) dedicated for these ideas. Crafting is just so healthy for our mind. It gives us something to concentrate on, then appreciate our end product that we did just by ourselves. Get busy!!

So this isn’t just everything on the list that is so important, but I felt these were definitely crucial things!! Take them into consideration, look them over and start your process on accepting your disease and loving yourself. You are your own worst enemy! At the end of the day, in the words of Elizabeth Taylor, “Pour yourself a drink, put on some lipstick and pull yourself together.”



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1 thought on “Perfectly Positive”

  1. Love this one! It’s so important to have a positive attitude, I always keep thinking we have no control over this disease but we can control how we react and how proactive we can be about it and think about the little blessings and positive things that have happened. Such as I have realized how strong I am and met an incredible guy which would never have happened had i not moved back home after being diagnosed, how much I love being home with my family and not in another state. Its not a matter of being hey isnt it great that i got sick and this happened because of it, because this disease SUCKS, but appreciating what we do have in our life and going out and living it. I have had trouble with that for the past 3-4 months cause it all came crashing down as I hadn’t been really dealing with what having pulmonary hypertension means for all the areas of my life not just my health. But I am back on track and ready to get on with my life and look forward to what challenges and life has in store for me.
    Sending love xx

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