PH can Suck It.

IMG_0128Living 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.

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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.

 

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6 thoughts on “PH can Suck It.

  1. I feel, dear sister….that filing for Disability and staying home to enjoy time with E and Scott would be the best thing for you. It has been on my mind quite a bit lately also. I just didn’t think you would go for it . I know how strong and courageous you are, and I’m sure you feel this would be bending to your weaknesses, which you have never been good at…. you’re a survivor, not a victim and have refused to let people see you as such. Which is an amazing thing!
    But, you’ve proven yourself, time and time again to be strong and self-sufficient. Now maybe is the time to enjoy what you have accomplished, really sit back, and take it all in. Enjoy what and brilliant and kind son you have, what an amazing marriage and life you have, without all the hassles of work and the rest of that stuff. Take each day and squeeze every drop of love and life you can from it.

    Liked by 1 person

  2. I also have PAH. I have been taking Opsumit for almost 2 years. I have good days and bad days but I have felt the best recently than I have since the diagnosis almost 2 years ago. I also take Adcirca. My levels drop when I take a shower and wash my hair to below 90. I just take it a step at a time and sit down when I need to catch my breath. I am 66 and I get frustrated with having PAH. I cannot imagine what I would have felt like having this at your age. I have been able to travel recently. I live in NC and we took the AMTRAK to Montana and to Canada. I limited my activities when walking but got along quite well. Hang in there and give the Opsumit a chance to work. It took a while for me. Maybe it won’t take so long for you since you are considerably younger than me.

    Liked by 1 person

  3. Don’t chase some silly bucket list. Do learn how to be open with your own vulnerabilities so that you can form connections with other human beings … I think, for me, what’s wrong with the bucket list is that it’s individualistic – the idea of the isolated self goes very deep in Western society – and I think it’s a red herring … It’s a distraction from the business of being human. We don’t all like swimming with dolphins but we are all made to connect to each other. That’s the really fun thing to do before you die. In my humble opinion, you should quit your job and take the SSDI if you have no human connections at work so that you can spend the quality time that your heart truly desires with your family and friends. Nobody who matters will judge you for this indulgence because life isn’t fair and those same people who might cast a stone would never trade places with you and suffer your pain so live your life as God intended, surrounded by Love and in a state of Grace.

    Liked by 2 people

  4. Go for it! I don’t know how long the process takes now but in 2008 it took over a year for all the needed paperwork was finally done and sent in for consideration. It was still denied once and I had to get a lawyer. I can’t even imagine having to go to work and deal with this disease and I don’t even have children. Doing almost anything tires me out. I’m 54 yrs old and have felt like my life was over since I was diagnosed. You are young, get your disability and enjoy your family.

    Liked by 2 people

  5. Hi. I’m 34 years old. I also had to decide to stop working full time when I had a hospitalization incident about four years ago. It was a very hard decision to make but I knew it was the only choice. This was already the second time I ended up in hospital within two months. I was always afraid that if I stopped working I should lose my “identity” or self worth because that is what people suppose to do when they “grow up”, they have a job. I live in Canada and I got CPP a Disability approved right away. I would spend as much time with your loved ones and also find a hobby you like to do or volunteering helps too. 😊

    Liked by 1 person

    1. Thanks for reaching out and the kind words. I was afraid of losing my identity by not working, feeling lie I’m not even myself sometimes getting lost by the illness. I think having more time at home, saving energy for what I want to do, will help me feel more like me!

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