PH sucks, and we all know this. But if we have to have it, we may as well find the humor in it. Maybe my slightly twisted sense of humor got an extra boost through all this, or maybe it’s because I delight in the ironic, but I usually find something funny at my hospital visits. Here are a few stories…
The very first time I found PH to be hugely ironic was during the diagnostic process. Right after a definitive diagnosis, they subject you to a whole bunch more tests to try to determine why you drew the short PH straw in the first place. One of the tests is the VQ lung scan, where they look for little clots that might be causing the issues.
What everyone failed to tell me until minutes before the test was that the dye they inject into you in order to view these itty-bitty places in your lungs is radioactive. Which means YOU are radioactive for several hours after the test. Which means you just might get pulled over for suspected terrorist activity if you are driving home and the cops happen to have their radiation scanners running.
Really? You’re going to inject me with dye, shove me into a tube (being “driven” by a tech in training I might add) and then let me go home while running the risk of getting pulled over for being radioactive?? What else you got?!? (Side note: I was not pulled over, but I kind of wish I had been. It would have been fun to explain.)
Then there was the time I went in for a cardiac MRI and my appointment was bumped for the convict already in the tube, because earlier he was running late getting there from jail. Uh-huh, he can go first, I’ll wait.
Both cardiac MRI’s have had music pumping into the machine to distract me from the tube inches from my face, that I can not escape. Both times some song has come on about not getting enough air or watching every breath you take. Okay, that second song is just creepy and stalker-ish anyway, and 10 points to anyone who names that tune.
Then there are the medical professionals I come into contact with. There was the tech in my second right heart catheter that bore a remarkable resemblance to Harry Connick Jr. That wouldn’t have been so bad if I hadn’t been strapped to the table and stripped of my dignity due to the, er, preliminary procedures for a RHC through the groin.
I have started to threaten to collect a fee from every hospital personnel who strolls by my gurney while I wait in the hall for my turn in the cath lab, stops, back tracks, and exclaims, “OH, you’re too young to be here!” Seriously, I’m going to start charging, and then I will single-handedly pay for you all to attend Conference in June of 2012 because I will have collected that much money.
I delight in schooling marginally informed professionals about PH, particularly when they dare say, “Oh, PH, sure I know all about that. So, they treat you with oxygen, right? And then, what, give you steroids or something?”
There are many benefits to being well informed about your disease. But rattling off a bunch of information to a respiratory therapist who shot you a dirty look when you tried to explain what PH is, and then stated the above quote, is priceless.
Please don’t get me wrong, this isn’t about bashing those whose care I have entrusted myself with. Because I am incredibly blessed to be in the hands of people whom I consider to be the best of the best in medical care, and certainly the best for me. I’ve said this many times, but I’ll say it again, the doctors that care for us in the PH population are hands down the most brilliant and compassionate people I know, and I am grateful for them every day.
What all of this is actually about is finding the lighter moments in the times when I really want to cry. See, in the face of something as sobering as PH, you have to find the humor. It’s a defense mechanism for me, pure and simple. I also figure if I have to be put in all these compromising situations, when I’d rather be doing just about anything else, I have the right to get just a little sassy, at least in my own mind, and maybe out loud if really necessary.
Thursday, May 26, 2011
Tuesday, May 17, 2011
Staying Active with PH
With summer just around the corner I am so badly itching to be outside again. Summer also brings an itch to be more active. Once the frost thaws and the sun is scorching the black top I know I will want to be riding my bike, taking my dog for longer walks, chilling in an inner tube on the lake, walking around town with friends, and hiking through new parks. PH has severely restricted my activity level over the years though.
I have this passion for the outdoors that helped define who I was. I grew up outside playing in the mud, swimming every day in summer, snowboarding and ice skating in winter and hiking through the beautiful colors in fall. Before I was diagnosed I remember things getting harder. I couldn’t ride my bike as fast as my sister anymore. I was no longer the ghosts in the graveyard champion of the neighborhood. After I was diagnosed, things got really bad. I could hardly toss a ball around with my sister without getting severe palpitations. I was also adjusting to the responsibilities and difficulties associated with having an IV medication. I didn’t want to go outside anymore; all I wanted to do was sleep and lay in bed.
But then something happened; my medications began to help. I was able to start walking around with my friends again. I could ride my bike, just at a slower pace. As I did more and pushed myself to get out of my depressed lump on the couch, my whole attitude changed.
I think trying to stay active is a big part of feeling good. Over the 10 years of having PH there have been a lot of ups and downs with how much activity I can handle. Now some days I am so tired and short of breath that getting out of bed is even hard. I tell myself that I’m going to do something like write in my journal or catch up on some of my favorite T.V. shows on these days. You can totally allow yourself the bad days. On the days you feel better though; sometimes you need a little push to get going.
The most important thing is to know your limits. This is best discovered through experience. It is extremely important to listen to your body because how you are feeling is the real judge to how much activity you can handle. There are days, however, where I hardly have symptoms from PH but I am feeling down on myself or maybe experiencing some nasty side effects from all the meds. I find that if I push myself on these days to get out of bed and make myself a big home cooked breakfast I will be feeling better and more motivated to get out of the house and be more active.
Everyone with PH knows that those precious days where we aren’t very symptomatic should not go to waste! So what else can you do to be active? Perhaps try some light exercise. Maybe take a yoga class. This could also be extremely beneficial to relieve stress. I took a tai chi class for 2 years and I must say it was incredibly stress relieving and it really helped me center my breathing and become even more aware of my body.
You could try doing something a little less physical like baking or cooking. There is always the option of trying some gardening or maybe taking your dog for a slow short walk. You could walk around at the beach only going waist deep into the water instead of swimming, or perhaps play in the sand with your kids or nieces and nephews. Even just getting out of your house and having dinner with your friends would be much better than staying at home depressed. Do what you can, and have fun doing it!
There is also the option of Pulmonary Rehab. This is for people who are still symptomatic even with treatment. This program aims to make you feel less symptomatic for a better quality of life and can help you tone your muscles and strengthen your breathing. If this is something you think you could benefit from definitely consider asking your PH specialist about it.
I think staying active with PH can really boost your spirits and help you feel better. Just take it slow, know your body, and don’t feel bad if you can’t do what you used to. It’s important to accept where you are now and be happy with that, even if it means just relaxing for a day. Does anyone else have ideas for staying active with PH? I hope you all have a fun, active and healthy summer!
I have this passion for the outdoors that helped define who I was. I grew up outside playing in the mud, swimming every day in summer, snowboarding and ice skating in winter and hiking through the beautiful colors in fall. Before I was diagnosed I remember things getting harder. I couldn’t ride my bike as fast as my sister anymore. I was no longer the ghosts in the graveyard champion of the neighborhood. After I was diagnosed, things got really bad. I could hardly toss a ball around with my sister without getting severe palpitations. I was also adjusting to the responsibilities and difficulties associated with having an IV medication. I didn’t want to go outside anymore; all I wanted to do was sleep and lay in bed.
But then something happened; my medications began to help. I was able to start walking around with my friends again. I could ride my bike, just at a slower pace. As I did more and pushed myself to get out of my depressed lump on the couch, my whole attitude changed.
I think trying to stay active is a big part of feeling good. Over the 10 years of having PH there have been a lot of ups and downs with how much activity I can handle. Now some days I am so tired and short of breath that getting out of bed is even hard. I tell myself that I’m going to do something like write in my journal or catch up on some of my favorite T.V. shows on these days. You can totally allow yourself the bad days. On the days you feel better though; sometimes you need a little push to get going.
The most important thing is to know your limits. This is best discovered through experience. It is extremely important to listen to your body because how you are feeling is the real judge to how much activity you can handle. There are days, however, where I hardly have symptoms from PH but I am feeling down on myself or maybe experiencing some nasty side effects from all the meds. I find that if I push myself on these days to get out of bed and make myself a big home cooked breakfast I will be feeling better and more motivated to get out of the house and be more active.
Everyone with PH knows that those precious days where we aren’t very symptomatic should not go to waste! So what else can you do to be active? Perhaps try some light exercise. Maybe take a yoga class. This could also be extremely beneficial to relieve stress. I took a tai chi class for 2 years and I must say it was incredibly stress relieving and it really helped me center my breathing and become even more aware of my body.
You could try doing something a little less physical like baking or cooking. There is always the option of trying some gardening or maybe taking your dog for a slow short walk. You could walk around at the beach only going waist deep into the water instead of swimming, or perhaps play in the sand with your kids or nieces and nephews. Even just getting out of your house and having dinner with your friends would be much better than staying at home depressed. Do what you can, and have fun doing it!
There is also the option of Pulmonary Rehab. This is for people who are still symptomatic even with treatment. This program aims to make you feel less symptomatic for a better quality of life and can help you tone your muscles and strengthen your breathing. If this is something you think you could benefit from definitely consider asking your PH specialist about it.
I think staying active with PH can really boost your spirits and help you feel better. Just take it slow, know your body, and don’t feel bad if you can’t do what you used to. It’s important to accept where you are now and be happy with that, even if it means just relaxing for a day. Does anyone else have ideas for staying active with PH? I hope you all have a fun, active and healthy summer!
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