I have to believe the best medicine I can think of for my situation is my family. I might feel like pure hell many times when I see them but they always know how to make me laugh and most importantly of all, understand. It isn't the same when you are with people who aren't your family because they just don't get it. My family knows the struggle is real and they know how to handle it the best. They don't baby me or treat me like a sicko, they just understand. After all that is what most people who live with chronic illness seek, a little understanding. We don't ask for much. I got off the phone with my daughter one day last week and it always helps. Hearing how the grandkids are doing always makes me smile. When I visited my son and daughter in law a few weeks ago I did really well. I had a little incident with my breathing while we were walking, other than that things went well. It was a pretty good week that week. Funny how everything can change in an instant. We were walking while I was there and I became very short of breath and the sweetest part was my son asking me if we needed to stop so I could do my inhaler. It's the little things that matter when you are constantly dealing with illness. It's like my family can read me when something isn't right, like they just know. Saturday when I saw my daughter she said she could tell by looking at my eyes I wasn't feeling well. Like they say the eyes are the window to the soul. I guess they are the window to chronic illness too. I am so thankful for my family. They see you at your best but they also see you at your worst. Most importantly they don't hold it against you when you are not doing well. It's funny how that works with the people you love. It's a fact that the rest of the world only sees me at my best and has no clue.
Like I said I haven't had the best of weeks this past week, almost brutal in part, because my insurance company decided they didn't want to cover one of my inhalers so I had to switch to another one. I switched and after a few days my breathing took a turn for the worst. Being the perfect patient I didn't call my doctor right away because with most medications some need time to work. I hoped the symptoms would get better with each day but I felt like they are getting worse. Breathing is hard work when your lungs aren't taking in enough air. Totally exhausting. Every time I move I'm huffing and puffing trying to get air in my lungs. I slept more last week than I have in the past month. Tired doesn't even begin to explain it. Friday I finally gave in and called my pulmonologist. I'm wait for his call back and hoping he switches me back to the inhaler I was on just nine short days ago. It is amazing to me how quickly your health can plummet. The worst part is the thought that he might put me back on prednisone again. I love the quick relief I get from pred but not the side effects I get from it. The wonder drug that turns you into a bitch from hell. I always tell Rich, "I'm on prednisone so don't piss me off." But by now he pretty much gets it so I don't really have to warn him. I feel sorry for the rest of the world though. Saturday I gave into the fact that I must do my albuterol inhaler every fours hours and do it faithfully until I hear back from the doc. The mind games I play with my health are so ridiculous. I try to not do my inhaler like I have to prove something to myself like I'm stronger than the illness. If I tell myself I don't need the inhaler my body will listen and do what my mind says. Really? You think by now I would learn. I wonder if I ever will? I guess it's all a part of accepting this is going to be my life forever now and I really don't want to believe it or accept it.
Being chronically ill is so unpredictable. The ups and downs can eat you alive if you allow them. That's how life goes when you are chronically ill. You just never know. In the meantime I lean on my family for the support that gets me through. The hope that they give me when I have a hard time finding my own. They remind me the hope is always there even when I can't see it.