Life With PH

Slow and Steady Wins the Race

Well, I am entering basically my last week of complete and utter freedom. I teach school and I’m also a college student, so as of the 27th I’ll be back to slaving away at both. Most of the country is getting back into our school routines whether its with yourself or your children. Either way, its always sort of tough. And when you throw in your health it can really just unbalance the whole situation. So after a few semesters of college, I’ve somewhat realized what it takes to not completely lose my mind and let my health unravel as well. The first semester I actually should’ve gone to college with all my friends I couldn’t because I was waiting on a treatment plan, taking tons of trips to Houston Texas to see a specialist and having heart caths. I started a little late but I’m in full speed now!

I think its tough for any PH patient to take on school because it increases your workload on top of what you already have with the demands of our bodies and possibly a job. I’m lucky enough to be able to have a job and go to school, and if your doing that too with your disease then I applaud you. Its easy to convince yourself you’re completely normal, and when you throw yourself out there with the “normal” you realize how much extra it takes to keep up. So whether you are just going to school, working or both – take my advice. You aren’t normal, so provide a little extra cushion and time to keep up like so.

First things first, your schedule should never interrupt your sleep time. Rest is so ridiculously important and makes a huge difference. I’m a very “GO GO GO” type person who never really unwinds, but I’ve had to teach myself to do so (with the help of melatonin) because it can make a difference at how I “GO GO GO” during the day and whether I’ll actually be able to do it. So, if you’re a mom that’s running all over the place, remember to stop, breathe and rest. And if you’re a college student (and a mom too), rest really does make a difference. Your heart needs it.

Take advantage of the disability center and with telling your professor about your disease. I’m not saying, you need to make a huge deal about it and walk in with a “I have PH” shirt on, but they should always be aware. Something could go terribly wrong one day, and when they don’t know then paramedics don’t know, and could do something wrong that isn’t compatible with PH treatment. Bottom line – your professor should know. This gets me thinking about medical ID bracelets too. I have one, but I just straight up don’t wear it. If you do, then congrats. I just cant bring myself to. Also, parking is a HUGE issue. You shouldn’t have to hitch hike to class – sorry, you just cant! People think its no big deal, but walking a lot is a huge deal. My dad was very concerned about this when I started college, so he got me a handicapped plaque and it helped. I encourage this and if you don’t feel comfortable with getting one, then talk to the disability center and see if they can set something up. But I’m warning you, anyone who knows anything about PH knows that its basically invisible. Unless you’re wearing oxygen, no one can really tell anything is wrong. Well, I got to my college campus one morning for a class, chose a handicapped spot, parked my car and hung my plaque up. I gathered my stuff and started walking to class when a man started yelling at me. I turned around to him rudely asking, “Is this your car?” I replied yes then he followed up with, “Are YOU handicapped?!” I was BLOWN AWAY at the question and was highly offended. I yelled back “YES I AM!” and stormed off. When I came back from class, I saw a ticket waiting on my car for a “not parked wholly in side the lines” excuse. OH HECK. I took a picture of how my car was parked just to prove how ridiculous the situation was, because my car was parked just fine. To sum this story up, my dad and I went to the Dean of the school and it was handled immediately. I don’t care what happened to the man or the officer. I didn’t cross that parking line, but you sure crossed MY line.

All I really have to say about going to school with PH is be patient with yourself. College is tough so don’t overwork and push yourself too hard. You know where the limit is.

If you have a child with PH that’s attending public/private school, then I say promote it to the staff till the cows come home. People do not understand the complications, expectations and the demands of this disease. Its going to be real easy for a teacher, gym teacher or fellow student to overlook it and push the child. Make ALL STAFF very aware of what is going on with your child. I would take it so far as to printing off a PH info packet on what the disease is for each teacher and the principal, because bottom line its invisible and they wont see it. Your child will be in gym, out on the playground, walking up stairs, racing with friends or asked to participate in fitness tests. Awareness will save a lot of hassle and possibly your child’s life. I wouldn’t slack when it comes to making the school aware.

I’m sure you’re even more excited for school now, aren’t you? I thought so. Take it slow, my fellow PH’ers. Oh and have some fun back to school shopping, because I will for sure. Urban Outfitters, here I come!!! 🙂



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