Living with this illness sucks. I had a bad few days last week and realized that it was due to the poor air quality. Pretty much EVERYONE had been out of power for days and was burning wood stoves for heat. It’s been very cold and virtually no wind which has left the air stagnant and nasty. Having PH is like breathing through a straw. Now imagine, breathing through a straw and all you are getting is dirty air. It’s left me more short of breath than usual and causes my heart to race out of control! The above picture shows my 02 sats and heart rate just after taking a shower.
Besides not breathing well, I’ve had a lot on my mind the past couple weeks. While I love to work and LOVE my job, I am starting to realize how hard it is for me to do anymore. A few days there and I am wiped out. It had been suggested that I apply for disability. At first, this was something I didn’t want to consider. Hell, I still don’t but I am not sure how much longer I can work full time. I am not even at work today because I needed more time to recover from last week.
I usually do not let my mind go down the rabbit hole. Sometimes it can get scary down there. However, I need to be realistic. While, medication can help slow the progression of this disease, there is no cure. I know that not one of us knows how much time we have left on this earth. I could die today in my sleep or by going out and getting hit by a car. Any of us could. I have always been one to stress living each day to the fullest as life is too short. However, unless you are given a life limiting disease, you really don’t have to think about the clock ticking.
My one true goal is to see my son grow up and graduate high school and get into college. If I live to see that then I can plan my next goal of seeing him get married and have kids. Until then, I want to spend as much quality time with him as I can. This is the only thing that make me feel applying for disability would be worth it. He is in 7th grade right now so I have only a limited time he will be home. I would like to be here for him before and after school, and be able to take him to his after school sports. I don’t want to leave my husband out either. I want to be the best wife I can be. Going to work leaves me so tired that when I get home I don’t feel like doing anything. This often leaves him to figure out dinner and do all the of the chores. I figure I could continue working and be too exhausted to do anything, or I could focus my energy on family.
Applying for disability is not I am deciding now, but as you can read it is being considered. I would qualify. I looked up my condition on the SSA website and it says that anyone with PAH whose pressures are 40 qualify. My pressures are in the 60’s. I started a new medication called Opsumit on 11/21 and I am hoping it helps making me feel better. So far I don’t notice a difference but I am not having any negative side effects so that is a bonus. Is it more important to me to feel good at work or to feel good at home with my family? I am so torn with this decision and need to look at all my options. I would like to hear from others who have faced something similar, especially if they have PH.
If you want more information on PH please do not google. Go to http://phassociation.org/ for most up to date information.