I figured I would update a little, just because. A ton of things have been happening in my life lately. Lots of very complicated things and I am overwhelmed about ALL of it. So much of it is very good, but a lot of it is also pretty bad. The hydrocortisone is not something I want to be on very long, at all. In fact, I hate being on it because it makes me feel kind of bloated and puffy, and in addition it also makes me bruise very easily (which I do anyway) and makes my resistance to infection even lower than it already is. Also, Dr. P wanted to see me ten days after I started on the hydrocortisone, so I will be calling his office tomorrow to schedule this appointment. All in all, I don't have anything really good to report to him. The steroid has helped me a little with my appetite and I am able to get to bed earlier and sleep more. Honestly though, my energy levels are no better with it. I'm not sure what this all means. All I know is that it's not really helping as much as Dr. P thought it would. I need to tell him that despite the fact that he is a wonderful doctor, I need to have someone with more knowledge and experience about and with Mito. I want to keep him as my PCP because he is a wonderful doctor and has advocated for me quite well, but I do need someone who can help me figure out something to give me a little more quality of life.
In addition to all of the health related stuff going on, there is also a great deal going on in my love life. Things are very complicated where that is concerned. See, I've been with this guy, Barry for six years of my life since I was fourteen years old. In case you don't know, his Dad was my Papa. After Papa died, we were both an absolute mess (and trust me, THAT is an understatement). We stopped talking for a great deal of time and he just finally started talking to me again. This weekend we talked a lot and finally decided that what we had in our relationship was just too valuable to waste and forget about. With that being said, things need to be taken slowly. Barry and I are both very overwhelmed still with the loss of our Papa and even though to an extent we have moved on from that, it still plagues us from time to time. The big advantage is that even though this grief of losing him is horrible, we now have each other to support in this whole journey. We know we want to be together, that is that
forever kind of love and all that good stuff. But, this is not going to be easy. He lives an hour away, and we both have some health problems. As far as Barry goes, he has some issues with hypotonia and also scoliosis. So you could say that for the most part he is in very good health. I however, am not and he has helped me a lot with that in the past six years. Our story is very complicated, and at times I would say it's downright heartbreaking. But the most important thing is, we do love each other. A lot. And we know we want to be together. After I am done with school, I will likely move to be closer to him and then we can figure out what we are going to do as far as jobs, a place to live, and starting a family. So, yes there is a lot of great "stuff" in there...but there's quite a bit of uncertainty involved as well. Guess we will have to pray about it and see how it goes.
There are more things going on, I am moving the second weekend in June to an apartment of my own. I need to talk about getting a Life Alert button or something relatively similar for my own peace of mind and safety with Dr. P. With that being said, I have a lot of packing and things to do in order to prepare for that move as well. I am very excited about this move and about being able to be more independent. Hopefully this is going to work out for the best and I will have time to myself like I need. I'm going to think about and pray about this upcoming move. I have a great amount of hope that it will go well.
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