Steroids, other drugs and life...part 1

Well, I'm sure that someone, at sometime said "Well, the 5th time is the charm!" If it hasn't already been said and recorded, it is now! It is a beautiful Sunday afternoon. Rod is out of town on business, Nick stopped by home on his way back into town from an out-of-town wedding, and is now peacefully sleeping on a couch in the family room (well, at least the majority of his body is on the couch, his feet and part of his head are kind of "out there" but he does look comfortable.), Chris is entertaining friends from Omaha, showing them all around Chicago, Charlie is laying (lying?? help me oh English teachers!) on the air conditioner vent in the laundry room and Ivan (Nick's cat who is visiting for an extended time) is asleep on the chair next to my very comfortable couch in the sunroom. I'm listening to music (including Nora Jones! I'm doing "homework" for her concert that Rod and I are going to this Tuesday night at the Orpheum!) and I was trying to finish reading Michael Crichton's latest novel, "Next." It's really goofy, but when I spend good money on a much-discounted hardback book, I feel compelled to read it, whether I like it or not. I just realized that my theory of book spending/reading is very similar to my theory of cooking/eating. Those who know me realize that this book by Crichton must be really, really bad if I'm comparing it to my cooking!!! Anyway, getting up to take a break and seeing my beloved first born, sleeping so peacefully reminded me, once again, what a very lucky and very blessed woman I am and what a very blessed and charmed life I have.
Then, I look at the clock and realize it's 3:00 and time for my "off-label study drug, Sildenafil" and remembered I had a blog that I was working on. What better time than now to break out the computer and try to adequately share with my friends how important the world of drugs has become to my life.

As I have mentioned before, I post on this blog for a couple of reasons. The first is that, for some reason, part of my "blessed" and "charmed" life includes some of the most loving, dedicated and kind people that I have ever met. And, these amazing people, who have prayed me back to "health" are interested in knowing how I am feeling. I also blog because I feel strongly that these health problems that I have and continue to deal with, were given to me for a reason. Now, don't get me wrong, I don't think that God "made me sick" because I've been evil and bad (although some of my Lincoln friends from high school may have a story or two to contradict that statement! :0 ). I honestly feel that either I am to learn something from all of this and/or other people are suppose to learn something from these experiences. So, given that "reason" I feel strongly that I need to post about things that might, at some point, help someone else who has to deal with the same or similar situation. Please do not interpret what I have said about my "reason" or "logic" for being sick as me being angry with God or angry about being sick. I am so very, very far from that. I am completely grateful that I am sick, both with Pulmonary Hypertension and this new pituitary thing. If I wasn't sick, I wouldn't have been able to spend the time I did with my father-in-law when he was ill with pancreatic cancer. If I wasn't sick, I wouldn't have just walked across the room a little bit ago, dragging my O2 tubing and looking at my beautiful son, sleeping.

OK, now to the point...drugs. When I went into the hospital, no one seemed to understand what was really wrong. I had so many "numbers" from test results that were off, some WAY off and some barely off. Nothing was making sense. All anyone knew was that my body had worked it's way into a state of anorexia and bulimia. I had been unable to eat any protein for over a month. My hair was falling out, I couldn't hold up my own head without using my arm and I was not really mentally with the world. But, these incredibly brilliant physicians from the Nebraska Medical Center worked and thought and talked and discussed and came up with a plan. That plan involved giving me mega-doses of IV steroids. From what I remember and what I really understand is that I didn't really have any steroids going through my body. I also was really low on potassium and a few other things that I started getting oral drugs for. Before they started the IV steroids, I was told by a couple of the doctors that I would be getting a large, large dose. I needed the steroids and I had to get as much as possible on board. I was also warned of a bit of a roller coaster ride with the steroids. At first, I would feel great because I hadn't had any for so long and my body really needed them. But they told me I might also have some low times and to not be surprised. OK, I thought, I can handle this.

So, the drugs started dripping and I started feeling a bit better. In fact I "illegally" got out of bed because I really needed to use the bathroom! I unplugged the IV machine from the wall and walked myself and my drugs into the bathroom! I have to tell you that this is the point where I lost a couple of days. Days and nights are so confusing. The time frame isn't really important, though. During an initial "high point" a very special friend, a minister from our church came to visit. I was so glad it was a "high on the roller coaster" time. We had conversation and I was understanding everything Pastor Terri was talking about! It was a feeling that I hadn't felt in a very long time. Then, the roller coaster started going down. I was starting to feel tired and Pastor Terri left so I could rest. But, the downhill ride didn't just stop at tired, it went down to emotional and I found myself crying for no reason. It was strange, but it wasn't anything too crazy. And I thought, well, this steroid roller coaster stuff isn't all that bad. The roller coaster then leveled out a bit and I was feeling kind of "normal." Another friend came to visit. This time, it was a friend who is a physician at the Med Center. He's a transplant surgeon who specialized in doing liver transplants. I told him that his timing was lucky because I had just had a steroid roller coaster ride and that I was really glad he didn't see it. He told me that I didn't need to worry because he had seen more than his share of "steroid storms!" I asked him what he meant, "steroid storm?" He told me that when they transplant people, it's necessary to give mega doses of steroids at first to help control rejection. He said they might give their patients as much as "blah-blah-blah dose." (I can't remember the exact amount.) Then I told him how much they had given me (again, no idea what the numbers were) and it was quite a bit more than the number he had mentioned. So, then came the most important comment said to me during my entire hospital stay. He explained what he called a "Steroid Storm." He said that the high's will be unbelievable and that the lows can be downright scary. He told me that some people even hallucinate. He said the most important thing to remember as I go through this over the next few days is that I am a smart woman and I understand that everything that is happening is because of the steroids. When I get happy, sad or scared, I needed to remember that I was not going crazy, it was a normal reaction, for some people, who were getting mega doses of steroids.

Things leveled down for several hours and I was doing a good job of joking about my steroid storms. I had a couple of friends and their little girl coming to visit. I was going to be missing her dance recital the next day so she was going to stop by the hospital to show me her pretty costume and make-up and hair. Right before she got to the hospital, the storm started again. This time though, I also had unbelievable leg pain/body trunk pain. I had gotten significantly behind in the pain medicine that I take for the Flolan side effect of leg pain. I kept remembering my friend's words that I was a smart woman and that I needed to remember that the wild emotions I was experiencing were a result of the steroids. I asked Rod to ask our friends not to leave and to please just wait a little bit so I could try to get myself under control. I so wanted to see them, especially their daughter, but I didn't want to upset them and I certainly did not want to scare their little girl. When they came in, I was more under control, although in my own mind, I was acting very strangely.