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A Charlie Weekend!

Monday, June 25, 2007
Charlie, our beloved 133 pound yellow lab, had quite a weekend! For those of you who don't know our family "that well," the Markin family has quite a history when it comes to pets. We had a golden retriever once named Cody. Cody was a bit "mentally challenged" and quite large....obese...140 or so pounds!! His claim to fame happened one fall weekend when he wandered out of our yard. We looked all weekend for him. On Monday morning I called the Human Society and discovered Cody had indeed spent the weekend there. I drove down to get him and as the paperwork was being done I asked the clerk where Cody was picked up. "180th and F Street." Well, we live of 182nd and F Street! The clerk continued, "It says that we got a call that there was a dead, bloated animal on the side of the road." Yes, that was our beloved Cody. He wasn't dead, he was just worn out walking two blocks. And, he wasn't bloated, he was just fat.

So, this last week I called the vet to make an appointment for Charlie because he had been dragging his rear end around meaning he needed to get his little glands (how gross) cleaned. I called and said I needed Charlie to see the vet because he was "dragging his rear." Rod took him in for his appointment. When the vet came in she had this very distressed look on her face. She looked down at Charlie, who was laying on the floor and said to Rod, "How did you get him here? Did you have to carry him?" At that point, while Rod is being totally confused, Charlie got up and walked over to the vet, giving her a big kiss. She had this incredibly shocked look on her face and said, "Oh my!! When your wife made the appointment saying that Charlie was 'dragging his rear' they thought he had loss the use of his back legs!" Evidently she had prepared herself for needing to potentially put Charlie down!!
Charlie's "big weekend" didn't end there! On Sunday evening Rod was working in the shop, a metal building on our property where he works on the cars, builds things, etc. Charlie was outside keeping dad company. I was sitting inside watching the late news when Rod walks in with this absolutely disgusted look on his face. He walks into the family room, puts his hands on his hips and announces, "Well he's really done it now!!" I had no idea what he was talking about and asked him what was wrong? He said, "Can't you smell it?" Well, I had my O2 on and all I could smell was nice oxygen enriched air, until I took off the cannula and smelled SKUNK! Rod, still standing there, in the family room, with his hands on his hips and smelling like skunk proceeded to tell me that "Charlie chased a skunk into the shop and the skunk sprayed Charlie, the shop and me!" At this point, I've put the cannula back on, pulled my pajama top over my head and asked him why he was still standing there! He said, "Well, I don't smell THAT bad! You should smell the shop! You should smell Charlie!!" I was worried that the skunk fumes might cause an explosion with all of that oxygen enriched air and was about to ask him about it when I peeked out at him from under the safety of my pajama top. But, instead of asking about a potential explosion, I started laughing. Here it was, 11:00 at night, and I was laughing at a 6 foot 200+ pound man in cowboy boots standing in the family room smelling like a skunk. I did what any good wife would do, I called Nick and Chris so they could enjoy the moment with me!!

The Dream....

Tuesday, June 19, 2007
Have you ever heard of a sleep disorder called, "Sleep Paralysis?" It is a condition characterized by temporary paralysis of the body shortly after waking up. Sleep paralysis occurs when the brain awakes from a REM state, but the body paralysis persists. This leaves the person fully aware, but unable to move. There are several possible causes for sleep paralysis including irregular sleep schedules, sleep deprivation and experiencing highly stressful situations.

The first time I experienced this was when Bud was dying. For those of who you don't know Bud, he was my father-in-law. Rod's mom passed away in December of 2003. Her name was Hetty Jane. She was hands-down the most loving woman I have every known. Rod's dad was then diagnosed with pancreatic cancer in June of 2005. He fought a hard, hard battle and passed away in July of 2006. He moved up from Lincoln and lived with us while he received treatment at UNMC and until he passed away. I experienced my first "bout" of "Sleep Paralysis" during the end of his battle. One afternoon I laid down for a much needed nap. When I awoke, I discovered that I was unable to move a muscle. My eyes were open and I could see. I could also hear, but I couldn't move a finger, a toe or even speak. I was alone in the house and was scared to death that I was dying or dead. Eventually, after what seemed like hours, that was actually closer to just a few minutes, I was able to move again. It was one of the scariest experiences in my life. I was wide awake but was unable to move a muscle. I called Rod who contacted a doc in the sleep disorder clinic. We soon found out what happened. I was told to try to have a very regular sleep schedule, including a daily nap. I was also told if it happened again, to just try to relax and remind myself that it will go away. Well, it did happen again, actually 3 more times during Bud's last few weeks. But each "bout" was shorter and was not anywhere near as scary, since I understood what was going on.

When I had to go into the hospital last month, I was admitted on Monday, May 7th and I was discharged on Sunday, May 13th (Mother's Day). Saturday had been a rough day in terms of steroid side effects(steroid storms). I am still very grateful that my doctor listened to me when I asked to stay one more night. After a full day of "riding the storm" I was exhausted but still too wired to fall peacefully asleep. When I finally did get to sleep the night was filled with dreams of diseases, monsters, flying dogs that looked like Charlie (our 135 pound yellow lab!) and even some visits with relatives (both alive and dead). These dreams somehow morphed into a dream showing me in my hospital bed. I was hooked up to the heart monitor, just like I was in real life. But, in my dream, the steroids stopped working. When the steroids stopped working, the stress made my pulmonary hypertension worse. Then the Flolan (the medicine I get 24/7 via a central line in my chest) stopped working. I was going into a physical downward spiral. The nurses were talking about that "sometimes these things happen. We do the best we can but we can only do so much." Then I saw a newspaper article that was written about my passing. It commented on how I had gone into the hospital with some serious problems with an unknown cause. By the time the doctors were able to diagnose the adrenal problem, it was too late. My body just couldn't handle both the adrenal insufficiency and the pulmonary hypertension. In my dream, the heart monitor started slowing down, beeping slower and slower and slower and then it stopped. Then, I woke up. But, when I woke up and opened my eyes, I found that I was unable to move. At first I thought I was having another episode of "sleep paralysis). But, every time I closed my eyes, I saw a bright light. I had no idea at this point if the light was a light in the room or if it was "THE light from God." I closed my eyes and prayed to God that if it was my time to go that I was ready. I really didn't want to leave, but I knew that He knew what was best. When I opened my eyes, I could see around the room, so I wasn't sure if I was experiencing the "REAL light or not." I closed my eyes and again asked God to help me understand what was going on. Then my body started to tingle and become numb. It didn't happen all at once. It felt like it was happening in cm squares, starting at my toes and working it's way slowly up my body. I decided that I must indeed be dying. I tried to call out to a nurse for help, but I could not speak or make any kind of noise. The numbness continued to work slowly up my body. I continued to close my eyes asking God to please give me guidance. I told him that I was surprised it was taking so long to die. I expected it to be a quicker process. Every time I closed my eyes to talk to God, I saw a bright light. I was not really afraid. Ever since I was diagnosed with PH in June of 2004, I decided that I needed to work on my relationship with God. Over the last couple of years, I had become a bit angry with God. Losing Rod's mom, our company going bankrupt, getting diagnosed and then having Rod's dad being diagnosed with pancreatic cancer had managed to push my faith to the edge. I have been working on building a loving relationship with God and, at this point, my faith had strengthened considerably and I had no fear of dying. I knew my boys and my husband and friends would be sad. But, I also knew they were strong. As the tingling and numbness of my body continued to progress, I could hear nurses in the hallway. I decided that maybe I wasn't really suppose to die. That maybe it was going so slowly so that someone could come in and get my heart going again. Remember, I had already dreamed that I had flat-lined. "Waking up" being unable to move just seemed to reinforce that dream as a reality. Anyway, when I heard the voices of the nurses, I tried to call out again. The sound that came out of my mouth was a pitiful, very quiet moan. I wanted it to be louder so they would hear me and save me. But, if this was suppose to be my time to die, I didn't want to disagree with God as to what His plan was for me. I closed my eyes to pray again and this time there was no white light. Ok, that was it! I was going to put every bit of strength I had into screaming for help. I let out another moan, this time it was louder. I tried again. This time not only was it louder, but the numbness was starting to go away in my fingers. One more louder moan did get the attention of one of the nurses aids. She came in and I tried to tell her to please help me, but of course, she couldn't understand me. She went and got my nurse. By the time she got into my room, I had lost most of the numbness in my hands and arms. I was able to move my mouth more and my voice was getting stronger. I "yelled" that I had died! That I had really died! I couldn't move, I couldn't call for help! I couldn't feel my heart beating and I was not needing to breath except for small little breaths. She tried to calm me down and told me that I hadn't died. She reminded me that I was still hooked up to the heart monitor and the pulse oximeter and if I would have had any problems at all, alarms would have gone off and someone would have been in right away to help me. I was in such a state, I was worried that I had actually died and that I was in some holding zone for heaven. In fact, the room looked totally different than what I remembered it looked like before I went to sleep. Even the bed seemed like it was different. All that did was reinforce my fear that I had died. This poor nurse, I was close to hysterical. I told her I need to talk to my family. Would she please call my family. She said that it was so early in the morning that she hated to wake them up. But, if I knew their phone numbers, she would help me make a call. In retrospect I realize that she was trying to see how coherent I was. I knew Rod's number and Nick's number and she helped my call each of them. I told each of them that I had died. I gave them a very, very short version of what I had been through. They each tried to console and calm me telling me that I had not died. They also told me that it sounded like I had another sleep paralysis episode and that along with the help of the steroids I had become very confused. Talking to them calmed me down and I then talked to my nurse about sleep paralysis. She went and spoke to the doctor on call and came back to tell me that they went through the cardiac data collected while I was asleep. They both agreed that between the stress, the steroids and the lack of sleep that I had another sleep paralysis episode and experienced a doozy of a nightmare.

After talking to Rod, Nick, my nurse and the on-call doc I felt very convinced that I had not died. Although, I'm also convinced that my conversations with God were real. If there had ever been a time that I need my Heavenly Father for support and comfort, the night I just had would have been it.

I got out of bed and felt very, very good. I asked my nurse to help unhook me and hook me up to portable equipment so I could have a little quiet alone time. I walked all around the floor. I stopped and looked at pictures and photos and magazines sitting around at various little "rest areas." I wanted to go down to the chapel, but the cardiac wires wouldn't let me off the floor. That was ok. Everyone else on the floor was fast asleep so I had plenty of time to have a conversation with God. When I turned the corner of one of the halls, I discovered that the floor I was on was also the ICU. There was a waiting room for families, and there were families in there crying and hugging and supporting each other. I stopped in my tracks and thanked God for showing me that even though I had just had the scariest experience of my life, that it was nothing compared to what so many people were going through. I thanked God for helping me get through my nightmare. By the time I got back to my room, I felt like a million bucks! I called the kitchen and ordered some breakfast and knew that I was ready to go home.

I tell people that during my last evening in the hospital, I was rebooted. I have no other way to explain what happened to me that previous day, evening and morning. Since then, I have not questioned anything that happened to me during my last evening in the hospital. I firmly believe between the medicine, the sleep, the sleep paralysis and the support and love of God, I have been "rebooted."

I am not trying to convince you that something miraculous happened to me while I was in the hospital. I’m certainly not asking you to believe that what I experienced was anything other than a bad dream. What I am asking you is to keep your mind open, your heart open and your arms open so if an opportunity comes along for you to be “rebooted” whether it’s physically, emotionally, intellectually or spiritually, you’ll be ready.

Thank you for taking time to read this post. Thank you for your continued support. Thank you for letting me share my steroid story. My hope is that none of you will have to experience an adrenal crisis, a loss of your pituitary and/or the need to be hit hard with massive doses of steroids. But, if you do maybe my story will help.

Much love

A nice weekend is a coming!

Friday, June 15, 2007
Nick is on his way to the airport to pick up his little(?) brother! Then, they are going to meet Rod and I at the Village Point movie theater so we can all see "Fantastic Four: Rise of the Silver Surfer." It's not that we like comic book movies, it's just that we love movies and this is one that both Nick and Chris want to see and Chris is too much of a cheapskate to pay the high ticket price in Chicago! After the movie we will probably go out for ice cream since we are having a tri-fecta celebration this weekend! It's Father's Day on Sunday. It's also our 29th wedding anniversary on Sunday! AND, Rod's birthday is on the 29th of the month and Chris won't get a chance to come home again before that day has come and gone!

Tomorrow we will spend the day cleaning and getting ready for an engagement party that we are hosting for two very good friends. They will be flying off to get married in Hawaii next week! It's going to be a lot of fun. We're using several sets of beautiful dishes that we brought home from Rod's parent's home. I've ordered some pretty centerpieces and have enough white tablecloths and white cloth napkins to make it a little bit fancy. We should have about 50 people. The only "rub" is that we planned on having it our garden room, which is not air conditioned and tomorrow's temps are suppose to top out around 90 degrees! I think we'll be setting up some tables inside!

On Sunday, besides going to church, we'll go out to brunch with the boys and hopefully relax and just enjoy being together. We’ll have to take Chris back to the airport in the early evening. Depending on how tired “we” are, we might run over to Papillion to enjoy the grand opening of an outdoor amphitheater!

Well, I best get going, it's getting close to MOVIE TIME!!!

Thank you for indulging me with a little "steroid storm" break. I hope you all have 1/2 as nice of a weekend as I know we're going to have!!!

much love

Steroids, other drugs and life...part 3

Wednesday, June 13, 2007
On Saturday, the day before I was allowed (and agreed to) to go home I was pretty wiped out. I wanted so badly to get some sleep, but I just couldn't relax enough to doze off. At home, Rod and Nick were firing up the infamous burn pile. Every year we have a burn pile that includes dead trees and bushes, leftover wood from projects and a variety of other flammable objects. There are several friends that have heard of our burn pile and Rod joyfully agrees to let them add their dead trees, etc. to the pile. This year the burn pile was a record 25 ft X 20 ft X 15 ft! We have to get a burn permit ahead of time from the Douglas County Fire Marshall. Last year, someone called the fire department, not knowing what was going on. But evidently this year's fire went of without a hitch.

So, Rod and Nick took turns watching the burn pile and visiting me. After my previous behaviors, I'm pretty sure the short straw was drawn by whoever was sitting by my bed! Rod came earlier in the day and then Nick showed up in the afternoon. Nick came to visit while I was trying to sneak in a nap. He brought along a book so it worked out very well....except that I couldn't fall asleep. But, other than being a bit too wired, I was doing pretty well! One of Chris' friends, who happens to be a hair stylist, stopped by in the morning to cut my long hair short. Due to the lack of eating any protein for so long, my hair had thinned considerably and quite a bit had fallen out. So, her little "hospital call" was a welcomed and comforting experience.

Nick left late afternoon so that he could get back to the burn pile. Rod called to see how I was doing. I was doing fine, I was just tired, and I told him to stay home and take care of the burn pile. Also, maybe he could get some rest since I had kept him up so much the night before.

After dinner, the storm started. I was starting to feel a bit of the paranoia. I tried to talk myself out of it, telling myself that I was a smart woman and that I understood what was going on. But it just continued to grow. The hospital floor was extremely busy with some very needy patients. Thank Heaven I had improved to the point that I wasn't one of those "needy" ones. But, because I wasn't one of the "needy" ones, I didn't see the nurses as frequently. When you are building up a big steam of paranoia, the last thing you want to see, is no one around. I tried to call Rod. But, by now it was late in the evening and he had fallen asleep. Now. when Rod falls asleep, he really falls asleep. If he falls asleep on the couch, you can't move the guy. Obviously, he had fallen asleep on the couch. He didn't answer the house phone, he didn't answer his cell phone and he didn't answer his pager. There was enough of my "sane" self left to realize that he didn't answer because he was asleep. He should have been asleep! I kept him awake the night before and he had to manage a 25 ft X 20 ft X 15 ft burn pile all day. So, I decided to call Nick. He's young, he had just finished being "on-call" at the Med Center, he should be easy to get hold of. Well, my poor son answered his phone. I told him, actually no, I SCREAMED into my phone at the TOP OF MY LUNGS that I had been left completely alone. That there were no nurses around, no one had checked on me in hours. I screamed at him that I hadn't seen anyone since his dad left, "hours ago!" Nick was furious! He couldn't believe that I had been abandoned! He told me to sit tight and he would be right over! He was on his way to dinner with his friend Joe and they would take a quick detour and come and see what was going on. When Nick showed up in my room, he was much calmer than he was on the phone. He stopped and visited with my nurse and soon realized that I had not been "abandoned" I had actually been "steroidized." He came in and told me all about the nurses and nurses aids who were working the floor and how I was all hooked up to the heart monitor and that if I was having trouble that someone would know. He also reminded me that I was having a reaction to the huge amount of steroids that I have been on and that even though I was getting less, I was still on quite a bit. I told him that I understood and maybe he could just stay until I fell asleep. My poor son took one look at my wired eyes and knew it would be a long time until I fell asleep. I told him I was trying to find shows on tv that were familiar to me to keep me calm, but those shows only lasted an hour and then I'd start getting scared again because I was alone and things seemed so different. I was now afraid of getting out of my bed and/or something or someone else getting close enough to me to hurt me. Nick now realized that I was not just feeling the paranoia side effect of the steroids, but seemed to also be experiencing some of the hallucination side effects. He offered to go home to his condo (which is just blocks from the Med Center) and get a bunch of dvd's of movies that I have watched and that we could set things up with my laptop and two of the bedside roller trays. I asked if maybe Joe could go get the movies (Joe, was out in the waiting room, I'm sure hoping Nick would forgot he was there so he could potentially sneak away!) so Nick could stay with me. My poor son agreed. I asked him not to let Joe into the room though (like he would want to see this!) because I didn't want him to see me "like this." Joe was back quickly with a variety of movies from "Finding Nemo" to "The Mummy." With the help of my nurse, Nick set up these two bedside trays so that I was basically "stuck" in my bed. I almost felt like I had been put in some kind of overgrown playpen or crib. But, it was what I needed because it made me feel safe. Nick talked to me like the best son/doctor in the world. I was so incredibly proud of him. He reminded me of what I had been through and what the steroids were doing for and to me. He also reminded me of all of the potential side effects of being on such high doses of steroids. He also warned me that I may be part of the small percentage that has hallucinations, but to just keep remembering that I was not going crazy and that as scary and uncomfortable as it might be, it wouldn't last forever. (Little did I realize that he was well aware of the fact that I already was having some hallucinations regarding the nurses and my perception of what they had and had not done. Well, I "let" Nick and Joe leave, got settled in and decided to start out by watching "The Mummy." I love that show and have watched it at least 10 times. At this point things are now going well. I'm safe in my "crib," watching my movie and feeling like a "smart woman who knew that I was having side effects from the steroids." All of a sudden, I heard someone say, "Annette Markin." I looked around the room and saw no one. I thought maybe I was falling asleep and had just imagined it, until it happened again. This time not only did I hear someone say, "Annette Markin" but now "mummy hands" were reaching up behind the hospital bed going for my throat! I kept telling myself that it was just the steroids, but it was happening over and over again! About the third time the mummy hands came for me and I heard my name being spoken by no one, I decided that I needed to switch movies! I thank our dear Lord that He kept at least a little part of my "sane self" available so that I would not go completely wacko. I was going to switch to "Nemo" but I didn't want someone coming in, look at me in my "crib" and see me watching "Nemo!" I was so paranoid of what someone would think of me! So, I switched movies several times, going back and forth and back and forth. I was so proud of myself that I decided I needed to call Nick. I wanted to thank him for his help and wanted to let him know that I was doing better. It is now about 2 or 3 o'clock in the morning. I woke him up. I was all ready to tell him thanks and such, but as soon as I heard his voice, I heard someone else say, "Annette Markin!" That did it. My calm, cool (talk about delusional!) and collected self hit the paranoia button again. I asked, no, I BEGGED Nick to come over. He told me, in the calmest voice in the world, that he couldn't come over, that he needed his sleep and that I needed my sleep. He told me to switch movies again and that I would be just fine. So, I did and told him I was better and that he could go back to sleep. I started watching "Love Actually" when I started seeing people walking around my room. I saw my father (who passed away just a few months after my youngest son, Chris, was born in 1983. I saw some "strangers" and I started "feeling" that people were standing behind me. I called Nick again. My poor, patient son answered the phone and I started in telling him that I needed him to come over, that I was sorry I was bothering him again, yada, yada, yada. Well, my young son, the doctor knew what to do. He lost his "patience voice" and said, "Damn it Mom!! Am I going to need to come over there?!?" All of a sudden, I knew I was just fine. I had flashbacks to telling Nick and Chris the famous mom phrases like, "Am I going to need to come in there?" "Don't make me pull this car over!" and my favorite, "Do you want me to take you out to the car?" Nick's response threw me right back into reality and once again I knew I was going to be just fine. I told him that I was fine, go back to sleep and I was going to do the same. I switched "Love Actually" to "Finding Nemo" and went to sleep.

Now, sleeping is a good thing. In fact, sleeping is a GREAT thing, unless you have a very, very bad nightmare. There is your "cliffhanger" for part 4.

I would like to thank everyone who takes the time to read this blog. I hope and pray to God that if anyone has to be subjected to a "steroid storm" that my experience will help. Also, if any of you do find yourself in that situation, I'd be happy to give you Nick's phone number. :0 he-he-he-he

Much. much love,

Steroids, other drugs and life...part 2

Friday, June 8, 2007
When I finished part 1 of "Steroids, other drugs and life..." our friends had just come into my hospital room to visit. I was trying to "control" the combination of a "steroid storm" and intense leg pain. I wanted things to seem "normal" and I wanted to visit, but I also wanted them to get out of there so I could stop trying to "control things." Just when I thought they were going to get going, they said that they wanted to pray with us. Now, you need to understand that these are some very, very dear friends that we originally met at church. Tammy, the wife/mom has been very instrumental in my faith walk. Her husband Dan has been extremely supportive of Rod, the boys and I through everything. And their daughter Carley, is so precious and stole Rod's heart and mine about two seconds after we met her. But, here I was, wanting to get them on their way and they wanted to pray! But, since I was in such "control" I didn't tell them they could pray when they got home. Instead we all held hands and Tammy started out. I couldn't believe the words that were coming out of her mouth. Tammy has always been a good "pray-er" and sometimes I "borrow" her opening lines when I'm praying. But, here she was saying all of the right things while she was having her conversation with God. It was like she was reading our minds! Then Dan put his 2 cents in. I can't remember exactly what he said, but it was something like, "Lord I am asking for you to heal this amazing woman. There are so many people praying for her. And Lord, I will continue to petition you until she is healed or until you get tired of hearing from me." I couldn't believe that I had been wishing they would "move along." Those words hit me right between the eyes. I knew that there was an unbelievable number of people praying for me and I thought "this would be an amazing opportunity for God to be able to show the power of prayer." At that moment I knew that I was going to be fine. I didn't know when it would happen, but I knew that it would happen.
Well, after our friends left, another "steroid storm" side effect hit and it’s name was “paranoia.” I did not want Rod to leave. It was late, he was exhausted, he needed to go home and take care of Charlie, the horses and the fish. I knew that but I was still convinced that I wouldn't be able to relax, go to sleep or be safe unless he stayed. Well, my poor sweet husband stayed for over an hour. He would try to leave and then I would get all wacky and convince him to stay for just a "few more minutes." Finally, he got brave and said he had to go and that I would be fine. He had the nurse come in to help convince me and he scooted on out. My poor husband, he did not get a moment's rest. Not only did I call him several times on his way home, but I called him several times after he got home. The night proved to be extremely long for both of us.
The next morning (Saturday, I think...please remember that days ran together or one day seemed like two, so the timeline is not really accurate....)one of the docs stopped by to see me and discussed about sending me home that day. After the "steroid storm" of emotions and pain and the fact that I hadn't really slept the night before I actually asked her if I could stay another day. I did not feel comfortable being at home with all of these strange feelings, side effects and general lack of understanding of what I was doing. Well, as she told me the next day, "I took one look at your face and realized that you were not ready to go home. Plus, people usually don't ask to stay another day, they're usually begging to get home sooner. You definitely needed to stay another day." And, so I did. And there, my friends, is your “cliff hanger” until part 3.

Noah Jones and teaching an old dog....

Wednesday, June 6, 2007
Before I go back to part 2, I had a couple of people email me that they wanted to know how the Norah Jones concert was. It was absolutely fabulous!! I’m really glad that I did my “homework” and listened to her new cd since she sang almost, if not all, of the songs from her new “album.” But, don’t get me wrong, she also sang lots of songs from her first two cd’s. In fact, she basically sang nonstop for almost 3 hours!!! There was a warm-up guy named M. Ward. Rod and I couldn’t believe when the “opening act” came out and not only was it this M. Ward guy, BUT Norah came out and sang with him! She’s dressed in jeans and is just standing there singing with him like they were just sitting at home, singing for fun! Then, she left him alone and he did some songs of his own. He was pretty amazing on the guitar and piano. But I, of course, couldn’t leave well enough alone, and just sit and enjoy myself. There was an unexpected break between M. Ward’s performance and the actual Norah Jones concert. Several people took advantage of it and ran out for a drink or restroom break. Rod and I found several people we knew who had also come to the concert. So, we spent most of the break visiting. Then, Rod decides he better run off to the restroom. When He returns, I realized that I needed to also go. But, I was sure the break was almost over and if I drug my O2 back up the stairs, down the stairs, to the restroom, back up the stairs and back down the stairs, I would probably miss the thing I came for. So, I told Rod I was going to do something stupid and leave my O2 and just run to the restroom. I said with the steroids, I knew I would be ok for a little bit. He gave me that look, and I still went. I stopped at the top of the stairs and told some friends who were seated there that I had decided to be stupid and run to the restroom without my O2 so I could get back before the concert started up again. They jokingly told me that if they saw me flattened out on the floor somewhere, they would get me back to Rod. So, just as soon as I get to the restroom, I hear Norah come out and start singing. I decide to go ahead and “finish my business” and just get back in there. Well, when I got back to the last set of stairs to go back to my seat, the concert hall lights were off and Norah was still singing. Even though it was really dark, I of course, figured I knew what I was doing and wouldn’t wait for a docent/guide lady to help me with her little flashlight. I took one step down and fell. I grabbed onto the hand railing which then twirled me sideways and landed me on the lap of the gentleman friend of ours! I felt hands behind me pick me up by my armpits (I have no idea who that was) and put me back on the top landing. My friend who I had just physically attacked insisted on walking me back down to my seat. ALL OF THIS GOING ON WHILE NORAH IS SINGING!!! Thank God I was up in the 2nd balcony so she couldn’t see this old woman being stupid and flying down the stairs!!! So, I sat down, told Rod how stupid I was, what happened with the stairs, hooked up the O2 again and scrunched down as low as possible in my chair being totally embarrassed, not to mention totally out of breath with the lungs hurting, my side hurting (where I kind of slammed into the guys chair) and, of course, my pride hurting. After about two songs, I was able to breath a bit more normally and decided there had to be something “good” that came out of that experience. I turned to Rod and told him the only positive thing I could think of so I would stop beating myself up over my decisions. I told him, “Well, at least my coumadin levels are ridiculously low, so I won’t be all bruised up on my side!” How pathetic!

But, the concert was really, really good. Plus, I think the old woman learned another lesson. I guess you can teach an old dog new tricks.

Steroids, other drugs and life...part 1

Sunday, June 3, 2007
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.

Hello my friends!!

Friday, June 1, 2007
I have made FOUR attempts at writing a post for this blog about something that is very important to me, something that if I didn't have on board right now would not even allow me to sit here and type, albiet, typing in a very frustrating manner, but still typing. The focus of the post is suppose to be about steroids. Without these wonderful drugs, I wouldn't have the energy or brain focus to be typing at all. But, these helpful little drugs are also giving me very, very frustrating side effects. I will be going back to the endocrine docs on Monday and I am hoping that we can adjust things a bit. Right now I think I have a bit too much on board. I'm feeling very wired and am having trouble focusing on exactly what it is I want to do and say. I told a friend that I felt like I was on a treadmill with ADD. This same friend (Sheila) told me not to worry about it, that those were kind of typical side effects for some people. She also asked me to please just do a quick post to the blog to let people know that I'm ok, that I'm just having a little trouble with the steroid side effects. I told her that I had tried several times to share all of this with people because I think it's important for others to know in case they ever have to go through this. I don't want someone else to think they are going nuts if they have to start steroids at some point and start feeling like this. But, every time I started to write, it sounded like some giant whining festival. I mean, for crying out loud, I am doing so, so much better than I was even just a week ago! But, again, Sheila told me not to worry about that, that I wasn't whining and to just drop a quick note to let everyone know that I am ok. So, thanks to Sheila, I'm letting you all know that I'm doing just fine, just having some trouble with steroids. Now, I'm going to go to the movies with Rod (my wonderful, patient husband who is very happy to have a basement to hide in when I get really wired ! :0 ). We are going to go see the new Demi Moore movie, Mr. Brooks.

My love to you all. Have a fabulous evening and I'll "talk" to you soon.

much, much love