We all go through many stages of grief when losing something you love. What if that something is your health and you have absolutely zero control over it. No amount of exercise will make it better;  no amount of supplements natural or manmade can help; no amount of talk or research will help; not even eating healthy can make it better. This is how I am feeling!

Every year I suffer another hit to my health and I think to myself, “If I can just survive this, I can do anything.” But each time I get knocked down, it becomes harder to harder for the emotional energy to get back up.  I know I’m usually all about positivity and I would think – “but I get up and fight even harder the next time.” I am not going to say that. This is a vent blog post about the emotions I am feeling and there physical impact on me.

I would normally vent to myself, my dad, my mom, Jake, or my psychologist , but I started this blog to tell the truth about my journey. Jake and I are getting married on October 28th, less than 39 days away. This is supposed to be the happiest and most exciting time in your life, looking forward to a bright future. Young and free, so optimistic; right?  Yes, but see when I presented with new symptoms and knowing that something is wrong, I went into survival mode. My world stopped again and our wedding had to take a back seat.  How am I supposed to think about our future when I feel so sick?

I’m scared to move forward because I know that as I get older that means my diseases will progress. I wish I can just yell STOP and everything stand still like my world has been. I see the hate in the news and around the world.  I think in times like these, I wish everyone could feel what it’s like to see the world through someone else and maybe there wouldn’t be so much hate, but thats a different topic. I just can’t understand why so many people are using up so much energy for hate and protesting, when I’m sitting here wishing I could just go outside. I haven’t for several months due to multiple wildfires within an hour of our home.

I am dealing with the realization that this could be my new normal.  It a scary thing to come to terms with.  Yes, the fires cause the exacerbation of my lung diseases but we still don’t know if this is permanent.  We just don’t know and thats scary for anyone, let alone someone who is only 24. I have always known that it could be worse and that nothing is guaranteed.  I am just now processing that this may be my new normal right and I don’t know how to come to terms with it.

In the past, it would take months and months and even years of working on accepting and learning to cope with my new normal.  That is no longer the case.   I am scared and the last thing I want to think about is the future. Trying to take it one day at a time is agonizing. I want to enjoy my last month as a single women and live, breathe, and think wedding but thats not me and I can’t do it.

Meeting now with a medical team that specializes in advanced pulmonary hypertension is terrifying.  It is another sign that my disease may be progressing to the next point.  After my heart cath on August 29th, we found out that my pulmonary pressures are higher and now I am realizing that I might not have a lot of years left where I remain stable. This is the reality that we are in and I really don’t know what my health will do. My Physician’s team also now includes the heart / lung transplant physicians. I am nowhere near that but when all else fails, its transplant time.

I was fortunate for a number of years that I only take one medicine for my pulmonary hypertension but I am now moving to combined therapies – which brings a whole new set of issues. The therapies will impact me. This is an awful time for my health to start to decline. I only hope, wish and dream that its not like the past where I was in a fog, and I hope for just one day my pain doesn’t ruin it, and  I can fully enjoy our wedding with the love of my life, Jake.