About a week ago I had some major swelling in my ankels/feet/calves. Every single time I’m at the doctor’s (no matter what doctor or why I’m there), they check for this. It’s a major problem for PH patients. I have never had it until Saturday night, April 18th. I called my Cardiologist first thing Monday morning. Of course, the head nurse/PA (not sure exactly what her official title is) was off that day. She called me back first thing Tuesday morning and we talked. After answering her questions, and her showing the Doc my pictures that I sent (yes I took a pic of my swollen ankles Sunday morning) and talking to him, she told me to monitor everything and keep a journal of it all. She also advised me to go on a low-sodium diet (below 3000 mg a day). I’ve been journaling everything from how my breathing was, the weather conditions (because the weather does effect PH patients), swelling if there was any, and my sodium intake for the day. I’ve been doing pretty good. Since that Tuesday morning which would’ve been April 21st, I’ve only been close to the 3000 mg a day limit once. I’ve managed to keep it under 2000 mg a day for the most part (which isn’t as easy as you might think). I had a miniscule amount of swelling one day so far, and then again last night I had a little swelling on the outer side of my left ankle. Otherwise the swelling has been non-existent.
Now, I will put it out there that for the entire winter (from October until about a week or two ago) I’ve pretty much been doing nothing at all. Yes it’s my own fault. Yes I know it wasn’t my smartest idea. I just couldn’t push myself to get up and move around this winter. I was exhausted every single day. I was sick with a sinus infection for 3 weeks in January despite trying to avoid people at all costs. Enough excuses though, I should’ve been getting up and moving around and I didn’t and it’s my own fault. Anyway, now my breathing is of course not as good as it should be because of my not exercising throughout the winter. I knew this was going to happen. I expected it. I am not surprised at all by it. Every other year I’ve been able to build myself back up in about a month or so. Granted I just started out going out more and being more active in the last 2 weeks so I’m not expecting instant miracles here (although if God is paying attention to this, I’d greatly appreciate one right now, although I understand if it doesn’t happen because you’ve got far worse things to oversee right now). Yesterday it was warmer than it has been in a long time. Inside my apartment it was really humid so I turned on the AC to cool things off and decrease the humidity. I also went over to my future In-Law’s house. While it wasn’t nearly as humid over there as it was in my apartment, it was slightly humid as well. The point I’m not-so-quickly getting to is that the humidity made breathing difficult to say the least. Everything I tried to do was twice as hard as it should’ve been.
I got back to my place last night and I had swelling still in the outside of my left ankle. Both of my legs from the knees down to my feet felt very heavy and stiff, like they were hard to move eventhough I was standing and walking without any problem. It was strange. I’ve never experienced that before. Needless to say I called my Cardiologist’s office again today. I left a voicemail and am waiting to hear back from them. I have no idea what they will do or say. I have no idea what testing beyond an echocardiogram may be in my future. I just know I’m going to try to face the situation with the same dignity, bravery, and intelligence that I usually do. I will be scared because I know it’s ok to be. I will not let that fear keep me from doing what needs to be done.
That’s where that stands, and now I would like to address a personal issue that is health-related also, but that has been coming up more and more in the last few days. I have had a few different people say things to me such as, “You look really pale today. You’re not doing well are you?” or “You look really tired.” or “How’s your health? You look worn out”. OK let me clear a few things up here and now:
1. Please STOP telling me how tired, worn out, and run down I look. I have a mirror. I know how I look. I don’t sleep well at night. I struggle to breathe every day. Of course I’m not going to look well-rested. What do you expect????
2. Please STOP telling me how pale I look. I have a mirror. I know how I look. I’m a little white Irish girl with 2 heart conditions and bad lungs. I’m not going to have normal coloring. It won’t happen. I was pale before I got PH in 1996. Why do you suddenly think that getting PH and PHighting for survival for 19+ years is going to make me look better? It’s not. So stop expecting it.
3. I know you say these things because you care about me, love me, and are worried about me. I’m worried about me too. I’m scared too. I love you for caring and worrying. I truly do. However, please keep in mind that hearing you all say these things to me only makes me worry more. It makes me more scared. It makes me want to crawl in a cave and give up. I will never do that because it’s just not my style. Please realize though that I love you and I understand your worry. Saying things like that to me, isn’t going to make me feel any better. It’s not going to make the situation go away or suddenly get better. I know I look bad. I see it every day. I live it every day. It’s me. This is my reality for right now. Let me deal with it the way I have to deal with it. It’s not your body. It’s not your life. It’s not your PHight. You can stand in my corner and root me on all you want and I’ll love you even more for doing that if you’re so inclined. If you’re going to point out the negativity of the situation though, please find another corner. I just don’t need to hear that right now. I say this with as much love and respect as I possibly can. Thank you for understanding, and if you don’t understand my feelings at least respect them! That’s all I’m asking. If you can’t do that, then find your own journey to walk, and leave the rest of us to navigate through mine with courage, positive thinking, and prayers.
I promise I am not sitting back and ignoring the situation. I’ve been in contact with my Doctor’s office 3 times in the last week. I’m on top of things and will continue to be until we find a solution, or until we improve things to the point where I can live with them if no solution can be found.