Let's Go Already!

I seriously can't wait to move. I'm not looking forward to the actual move itself (especially since I'm a weakling these days), but I am looking forward to being in the condo. Two neighbors instead of... I don't even know how many. No one living above or beneath me! No screaming kids in the lobby--no lobby!

I am totally stressed out about the actual move. I am stressed about getting the truck (as in, it actually being there, as reserved). I am stressed about driving the truck into my apartment complex. I am stressed about inconveniencing the neighbors by blocking their garages, although I really shouldn't be. They inconvenience me every day with their screaming kids, smoking, and generally trashy loudness.

One thing that's nice is that we have overlap between the apartment and the condo, so if everything doesn't make it into boxes this week, we can always bring the rest of it down by car. Of course, we want as much of our stuff to go on the truck as possible--so that we don't have to carry it. People from church are helping us move.

Which brings me to another stress topic. I don't trust them to show up! Renting a truck is NOT cheap, so I'm hoping they will show up. My ward is not.. um.. what's the word... reliable. But I have hope.

I can't wait to be in the new place, because my 45-60 minute commute will become a 10-20 minute commute. Oh, yeah! I will save a lot on gas. It will be lovely for days when I take a freelance interpreting job in the evening. I can go home for a couple of hours instead of hanging around work until time for my other job. I'll be able to accept a lot more jobs!

Ooo, and I might be able to run home for lunch sometimes. That would be nice. Two of my schools are within 5 minutes of my new home, and so is my boss' office, which is one of my new workplaces. That's kind of a long story.

Another thing I can't wait for but is stressing me at the same time is my neurology appointment tomorrow. I'm glad it's late in the day instead of in the morning, not only because I don't have to take off work but because I tend to get worse as the day goes on. I'm not going to take painkillers tomorrow, so he can see how fun it gets.

I hope this doctor is smart. I don't care if I get a diagnosis or label; I just want the symptoms to go away! Give me a shot or something.

I have a feeling the process will continue, but I'm okay with that as long as we're narrowing in on a target. I got a blessing yesterday. What I really wanted was for the doctor to have a blessing.. but getting a blessing myself was the next best thing.

One thing I'm not stressed about is Laynie getting a job. Way to go, Laynie! Hopefully they recognize the magnitude of her awesomeness and decide to renew her contract in the spring.

A Long Battle

Today I had my last regular visit to the dermatologist. That seems unreal to me, because I've seen him every month for 16 months now. And in honor of the occasion, my veins decided they would prefer to keep their blood, thanks very much. Well, they were willing to let go under the skin and out around the needle, but not actually through the needle. Sigh.

But the good news is that I've been off Accutane for a month, and so far, so good! Dr. D said it best: It's been a long battle. So glad it's over (knock wood).

Farewell, Old Friend

My Aquahpor addiction began last summer, as the Accutane medicine made my lips into dessicated shells of their former selves. They were so, so sensitive; they would blister if I ate anything salty, and they seemed to be trying to grow together. I tried a variety of lip products, which I had to use several times each minute and STILL was in excruciating pain. Lips apparently have a lot of nerve endings. After a week of torture, I hit on Aquaphor, and I have not looked back.

At first I only had to use the stuff every couple of hours, but as my skin started to clear up (hooray!), my lips became worse (boo). If I didn't have Aquaphor on, my lips would stick together within seconds, ripping skin off when they parted. This was not enjoyable. Eventually, I was up to a half-tube-a-day habit: I used the ointment about once an hour, plus every time I took a drink, and every 2-3 seconds while eating. I am not exaggerating. This is how it felt: 

More Aquaphor NOW!

I have two tubs at home, a large tube in my purse, and, conservatively, about five million small tubes of Aquaphor in my house, car, purse, laptop bag, church bag, and desk. If I suddenly found myself without Aquaphor, I would immediately get myself to the nearest CVS. I cannot live without it. While I have a love-hate relationship with Accutane, and I have LOVE, LOVE, LOVE, LOVE, LOVE relationship with Aquaphor.

I stopped using Accutane about three weeks ago, after 10 months on it. My derm says I was a pretty tough case, because people are usually on it for six months. My skin was just starting to clear after six months, but it's great now. I am nervous about whether it will stay that way, but that's another story.

Just now my lips became sore and I put on some Aquaphor.. then realized that I had not used it in two hours! Not since I woke up. And I ate breakfast! This is unprecedented in my peri-Accutane existence.

While I will be happy to live like a normal person again, I will always have a soft spot on my heart for Aquaphor.

Gross

Oh, my gosh. My belly button scar is so gross. Laynie took a picture--I'll blog it later.

I'm so bored, and so frustrated. Everything makes me tired! Yesterday afternoon Laynie took me to Best Buy, which is right up the street. After 10 minutes, I just wanted to crawl into bed. My stomach hurt and I was exhausted. I am such a wimp!

Today my big outing will be to my family practitioner, Dr. C. She will fill out some paperwork for short-term disability for me, since I basically have no sick time. There are things I like about working for a contract agency, but the amount of sick time is not one of them.

But on the positive side of things, my swallow is just about back to normal. Yaaaayyyyy.....

Surgery

I finally took the plunge. Surgery. Here I am at about 6:15 am, ready to go back. My girls Katie and Laynie were with me, and they forgot their cameras... good thing for phone cameras! I wasn't nervous yet. It didn't hit me until I walked into the OR.

Hazel, an anesthesia nurse, had started my IV. She signed and dated the tape. It HURT! Worst IV yet for me. She also took some blood from the crook of my elbow. That didn't really hurt. Too bad she didn't know to do that before she had my IV all taped up. The blood was for Dr. M-the-GI-guy's research study.

Let's get this party started!

I'll go ahead and apologize for a long post now. I've got nothing else to do today, and this is like my journal entry.

They wheeled me on my bed to the OR, and stopped outside. They had me get up and walk in. That was when the emotions hit. I realized it was really going to happen. I felt the tears welling up. The anesthesiologists were getting the table ready for me to get up on it, and I looked around the room. A little. I avoided looking near the table, because I didn't want to see any instruments. But I saw the radio in the corner. The room was big, and the table was small. I told the anesthesiologist (the REAL one, not his resident, who was more nervous than I was) that I was kind of scared. He was very reassuring and had me get up on the table and stretch out my arms onto the arm boards. Somebody put a pillow under my knees. I could see the strap they were going to use to keep my legs on the table, but she didn't put it on yet. The anesthesiologist said he was going to give me something to relax me. I do not remember a thing after that. I suppose that he didn't actually put me out yet, because the surgeon wasn't even in the room, but I don't know.

Dr. M-the-surgeon removed my gallbladder, which turned out to be badly diseased. It was contracted. He also removed my appendix, which was totally fine. I guess he figured as long as he was in there... Well, I had known that he probably would do that, because he put three procedures on the informed consent form: laparoscopic cholecystectomy, EGD (meaning upper endoscopy), and possible appendectomy. I signed it without looking. I was signing a lot of papers. Later (this is going back to before the surgery, obviously), a nurse brought it to me to verify my signature and read off the procedures. I was like huh? Whatever.

Dr. M-the-GI-guy was right: I did have actual reflux (the surgeon thought I was confusing heartburn with gallbladder pain), and it was a separate problem. I knew I liked that guy. He was smart. Dr. M-the-surgeon saw reflux during the endoscopy, even though I had taken Prilosec the night before and that morning. He did not see evidence of Barrett's esophagus, but he took biopsies. He also took biopsies from my stomach, and did something that will test for H. pylori. He found that I have a small hiatal hernia. I also have a grade II lax GEJ sphincter (that's the lower esophageal sphincter on the hiatal hernia picture). I wonder how many grades of laxity there are. Anyway.. that explains the reflux.

I had a tough time waking up from the anesthesia. Of course I was really groggy, and my eyes didn't want to open. The first thing I registered was pain--on my face! My cheeks and lips were burning. Darn Accutane has made my skin so sensitive. I think I've written before my Aquaphor addiction. As I woke up, the oxygen mask was only making my cheeks hurt worse, and I began to cry. The nurse (my best nurse out of the four I had) came over to see what was wrong, and I tried to sign pain and thirsty, and she didn't get it. Actually, I didn't even mean that I was thirsty. I meant dry, but somehow I signed thirsty. My brain was a little addled. The nurse seemed to think I was randomly moving my hand, and she kept asking me what was wrong. I finally realized that I was signing and of course she is not going to understand, so I whispered, "Vaseline. Dry." That's right, my first word upon waking up was not Mom, Dad, Katie, or Laynie... It was Vaseline. The nurse noticed the rash all over my face and got worried. She smeared Vaseline on my lips (sweet relief!) and had the post-anesthesia doctor, Dr. S, look at my face. They were getting kind of worked up about it, so I must have looked awful. I kept trying to say Accutane, and finally they got it. They put bacitracin on it and I felt much better. Except that my stomach hurt and itched. I asked what time it was: 11:30. I had gone into the OR at 7:15. Later I found out that I came out at 10:58. I guess I was under the knife for three and a half hours.

The surgeon came by to see me, and he told me that he removed my gallbladder, which was quite inflamed, and my appendix, which was healthy. Prophyaxis, you know. The more I think about it, the happier I am that he did that. That was all he said. A few minutes later, the anesthesiologist came by to see how I was doing. After he left, I was not doing too badly, and they were going to get Katie or Laynie to see me. The nurse came back to say that they weren't there. I figured they were still at audiology, because Laynie had a mapping appointment. I didn't care anyway. I didn't have a desire to see them. It wasn't that I actively didn't want to see them, I just didn't care. Then I felt like there was junk in my throat, and I had to cough. I had trouble coughing it all up, and I ended up making it worse for a while, and I couldn't breathe. The monitor was blaring its warning, and the nurse helped me sit up to cough it out. Finally I did, and I laid back down. My throat was so dry. It hurt to breathe! Every breath felt like little knives stabbing the back of my throat. I started to cry, and the nurse wasn't able to help me feel better, so she went to get Dr. S. I wanted to stop her, because I knew the doctor couldn't do anything about it. But I couldn't exactly yell after her. I could barely whisper.

While the nurse was gone, my throat began to settle down, and I wasn't feeling too horrible. But then I started crying uncontrollably. It hurt to cry, but I couldn't stop. Dr. S came, and I told her that I was fine, but I just couldn't stop crying. She and the nurse went out to the other side of the curtain to talk. I could hear them just fine. Dr. S said that the medicine (from the anesthesia?) was making me cry, that it would probably continue for a while, and just to reassure me. I opened my eyes and smiled at the nurse to let her know that I heard everything (still crying, ha). She came over and told me to get some rest. A few minutes later, the creepy crawlies started.

I felt like something was crawling under my skin, all over my whole body. I loved the pressure from the leg massager things, which were on my lower legs. I wished I had those all over. I kneaded my hands into the bed to try and get some pressure, wondering if this was how sensory disorders feel. This is going to sound crazy, but I reeeeeeeeeally wanted to beat my head, like just hit it with my hand, because I thought that would make the feeling go away. I didn't, because I figured the nurse would flip out. It was hard to contain that impulse, though. Finally, I fell asleep, or at least into a haze. I could hear the conversations around me. The guy in the curtain area next to mine had had some malignant tumors removed from his lungs. His family was loud. I wanted them to be quiet so I could sleep. I think I finally did sleep.

At around 1:30, I woke up doing a little better. The creepy crawly feeling was gone, whew. After a while, the nurse asked if I wanted to see my family, and I said OK, but my voice didn't work. She understood my mouth movements, though. Katie came to see me, and I still couldn't talk. I just couldn't get my voice going! I decided to sign. Poor Katie. I didn't have great motor control yet, and I was signing with only one hand. That conversation was basically one big miscommunication. She told me that the surgeon had spoken with them, that he removed my gallbladder and appendix, which I knew. She also told me about the hiatal hernia, which was news to me. She said that hiatal means small, and I tried to tell her no, hiatal is referring to the location of the hernia, as opposed to an inguinal hernia, etc. But I had more language inside than I could really express. Katie didn't understand me. I'm sure my fingerspelling was horrible. I tried to ask if I needed surgery to fix the hernia (thinking about my friend Deb from work, who had a hernia repaired last year), but Katie thought I was talking about pooping. If you know ASL, you will understand why confusing surgery with poop is a perfectly reasonable misunderstanding. I started getting my voice and the nurse came over. She was confused, to say the least! Katie left, and the nurse said, "I talk and you respond.. I talk and she responds.." Haha, I told her that we are both hearing, but we were just signing. Come to think of it, I don't know why Katie was signing back. My ears worked just fine. Putting out what she was taking in, I guess. I think Katie left pretty frustrated.

A little while later, Laynie came back to see me. I don't really remember much, except that we communicated fine. Laynie just reminded me that she was the one who told me that I only had two holes: an umbilical incision and a shorter incision (punture?) under my right ribs. I was surprised and didn't quite believe her, because Dr. M had said he would make three punctures and an incision. The nurse said, "Yeah, I think there are only two--I was looking for them before." Eh? When I was out? Haha. So she looked again and still only saw the two spots. Wow.

I've said a few times that my mouth was dry--this is something I struggled with all day. The nurse swabbed my mouth with water every now and then, but I was breathing through my mouth (guess I didn't need the cannula on my nose), so it kept drying out. I wasn't able to eat or drink yet. One thing I noticed was that I was aspirating the bits of water that would run down into my throat. I was hoping that a larger bolus (bigger swallow) would help, and I didn't worry too much about it.

Katie and Laynie took turns visiting me all afternoon and evening. Laynie took this picture of Katie in the waiting area. Little techie girl.

Of course, they wanted to get me up and eating, drinking, going to the bathroom. All of a sudden, I really needed to pee. Laynie was with me at that point. I wanted to try and get up to use the bathroom. When the nurse sat my bed up, the room spun. It spun more when I tried to sit on the edge of the bed. I wasn't able to sit up straight, and I wanted to lie back down. I just wanted them to leave me alone. All of a sudden I did not have to pee. The nurse got a wheelchair and was locking the wheels when the room spun again and a wave of nausea washed over me. I leaned against Laynie and began to cry. I told the nurse that I was nauseated, and she laid me back down and went to get medicine for that. First she had me use a bedpan. Weird. Then she got the medicine ready, warning me that it was going to make me sleep for a few hours, but I would feel much better when I woke up. It was called fenerdyl or fenerfen or something like that. The nausea subsided as soon as I laid down, but I wasn't thinking clearly enough to connect the nausea with the room spinning, so I didn't stop her from injecting the medication into my IV line. Within 10 minutes I was in a stupor, but it took a long time for me to fall asleep. I kept hearing conversations around me and machines beeping.

I woke up around 5:00, and Laynie was there again. I had to pee again, and they tried to get me up again. Same thing: the room spun and my stomach spun with it. All of a sudden I had a word for it: vertigo. I told the nurse that I was feeling nauseated and couldn't get up to use the bathroom, but I didn't think I needed nausea medication. I tried to explain the vertigo. She gave me nausea medication anyway, but a different one, which would not make me drowsy. I was fine with that. But I still wasn't able to get up, and I had to use a bedpan again. Then the nurse kicked Laynie out. That nurse kept kicking them out.

I wanted to get up, and of course everyone wanted me to. I was learning that if I fixed my eyes on something directly in front of me, the room would not spin, or at least not much. So I sat up in bed for a while, practicing that, and then I asked the nurse to help me to a chair. Oh, man, did my stomach hurt when I stood up! And it hurt sitting in the chair. The nurse offered to put my legs up, which helped tons! Dr. S came by to discuss pain, and I told her that I was having quite a bit of pain, maybe a 7/10. But I did not want something that would make me dizzy or lightheaded. I agreed to take IV Tylenol. I think it was called Toridol. It didn't really help, but I have a decent pain tolerance, and pain wasn't my main concern at that point. Pain wasn't what was keeping me from going home; vertigo was.

The nurse wanted to get me eating and drinking, and I was definitely down with this plan. It was about 5:30 by this time. She offered Pepsi or Sierra Mist, and I chose Sierra Mist. I would never drink caffeine. She was gone for a while, and Katie was there by that time. The nurse said, "OK, here are your crackers, and here's your Pepsi." Apparently they were out of Sierra Mist. And I had to drink something carbonated to try and get some of the air out (they pumped me full of air for the laparoscopic procedure), so water was out. Oh boy. There was no way I was drinking Pepsi. I knew it would all work out. Of course, Katie offered to buy Sierra Mist from the vending machines in the waiting room, and the nurse thanked her. Katie was gone for a while, reappearing with fruit punch. As in, non-carbonated fruit punch. The machine with Sierra Mist wasn't working or something. The nurse rejected the fruit punch and was ready to give me Pepsi. This was a different nurse, actually, the only one whose name I got. Earl. Big guy. At first I wasn't too sure about him, but I ended up liking him. I explained to him that I could not drink caffeine, and he was fine with that. Katie texted Laynie to get something carbonated for me. About 10 minutes later, Laynie texted back that someone needed to watch the bags if she was going to go looking for more vending machines. That whole time we had thought Laynie was off getting my drink, but I guess the texts took a while to be received. So I sent Katie out to the waiting room. It felt like forever before Laynie showed up with Sprite. She had had to go all the way to the cafeteria, which is two buildings away! I really appreciated that.

I got to drinking, and just as I had feared, I aspirated with every sip. Small bolus... large bolus.. it didn't matter. Chin tucks didn't help. "Hard and fast" swallows didn't help. I wasn't aspirating the entire bolus, but a little bit with each swallow. I was able to cough it back up every time, though (although I would often reaspirate it when I tried to swallow it again). I told Earl that I was aspirating, and he asked me what I thought was happening. He knew I was a speech pathologist, and swallowing is within my scope of practice. I paid closer attention. I thought it was a problem with the pharyngeal phase. When I put my hand on my throat during the swallow, I could feel my larynx elevating. But was it enough? Or maybe I wasn't adequately clearing the laryngeal vestibule--what most people would think of as the back of the throat. I could feel liquid still there after a swallow. Maybe the upper esophageal sphincter was snapping shut too quickly, before the entire bolus was in the esophagus? Maybe I the problem was really with the oral phase of the swallow, that I wasn't pushing the entire bolus back. What I wouldn't give for a barium swallow or FEES, just to satisfy my curiosity. Well, it's not worth it just for curiosity's sake.. but you know. I'm nerdy, what can I say?

It wasn't just the liquids either: I aspirated some crackers, as well. I had to laugh when I coughed after swallowing crackers and chewed up cracker hit the back of my hand HARD. It was like in the movies when a person is choking and someone does the Heimlich. I figured all of this was due to the anesthesia or maybe the intubation. Earl told Dr. S, who came over and was concerned. She checked my chart and noticed that I was an easy intubation. She considered keeping me NPO (which would have meant that I would have to stay in the hospital, I think), but she ended up letting me keep trying to eat. She said it was because I was an SLP and she trusted my judgment. Hm. I kept trying to eat, and I kept coughing after each swallow. The more I coughed the more my stomach hurt. My regular nurse (Earl was filling in for her because she was busy) came over to check on me. I told her that I was aspirating, and she said, "Oh, I'm sure you're not really aspirating. You're sitting up, so I know the food is going the right way." She was exactly the kind of nurse that drove me crazy during my hospital internship, because they send people home who are at risk for aspiration pneumonia! Nurses have to refer when patients are aspirating, so that the SLP can at least to a bedside swallowing evaluation. I explained to her that you can aspirate sitting up, and I am. She went off to find the doctor, still think she was right. She came back a little more contrite.

My surgeon walked snappily by at one point and asked how I was doing. I told him I was fine except that I was aspirating. He said, "You're dysphagic?" and laughed. He asked Earl to get me a spirometer, reminding me that I should know what to do with this, being an SLP and all. He wants me to use it to monitor my lung capacity and to work out my lungs. He said he would trust me to call if I needed to see an SLP. He was giving me a hard time about being an SLP with dysphagia.

After my adventures in aspiration, I wanted to use the bathroom. I asked Earl to help me. He went and made sure the bathroom was empty (smart), then came back to help me up. I still had vertigo, but I was getting better at finding a spot to focus on, which kept the room from spinning. Much. I crept very slowly to the bathroom, holding onto Earl. I noticed that he had placed a seat cover on the toilet for me. Thoughtful. I went a little faster on the way back--maybe a turtle's pace instead of a snail's pace. Turns were tough, but spotting helped. I finished my crackers and most of my Sprite (coughing all the time), and then it was time to discuss my release. Yes!!!

Earl was so sweet as he wheeled me down to where Laynie and Katie were waiting with the car. He warned me which way he was going to turn, so that I could find a spot to focus on. It worked, and the world didn't spin much.

Hooray, home! My vertigo was a little better. I was able to move my head about 30 degrees without things spinning, as long as I kept it level. Looking down was the worst. No, looking diagonally downward was the worst. We left the hospital at 8:00, and I was in bed by 9:30.

I got up about every two hours to use the bathroom. The pain was getting worse all the time. I had only taken Tylenol or ibuprofen since 6:00 pm. Dr. S said that the oxycodone that I got would help with incision site pain, but that Tylenol or ibuprofen would be best for crampy, internal pain. I occasionally felt a breathtaking stab of pain at my incision site, but mostly bad crampy pain. It was worst when I was standing. My whole stomach felt to tight. Still does, actually.

I got up at 5:45 and ended up taking oxycodone around 7:30. I'm not sure it helped. I think just sitting still helped. I have a low dose of oxycodone anyway, just 5 mg. I had a bad reaction to codeine in the past (it made me puke), so the doctors were playing it safe. I have 90 pills (89 now), but I doubt I will take more. At least it didn't make me puke.

Now I'm in a weird position. My brain is active, since I'm not on narcotics. I feel fairly decent, except for abdominal pain. But I can hardly walk. So I can't do anything! I think I will be tearing my hair out this week. I have never experienced anything like this. Normally if I am sick, I feel tired (which I am, but not too badly--just one nap today), light-headed, dizzy. You know. So I don't want to do anything. But now I want to do stuff but can't because I can't move well and I have all this pain! It's just weird.

So that's what happened. Wow, it has taken over two hours to type this blog post! My butt is asleep. Time to go.

Oh Darn

Weird day yesterday. It started out fairly decently, and I wasn't having a whole lot of pain. I should mention that I was in pretty much constant pain last Thursday-Saturday, a little better on Sunday. I had another pain attack Sunday night and had great days Monday and Tuesday, with very little pain. Yesterday it started up again a little, and I was having processing problems (SO annoying). I did wake up with pain and reflux today. But that's not why I am saying, "Oh, darn."

Yesterday I was working (of course), and I happened to check my phone messages at 1:45. I had three voicemails: one from my dentist (broke another temporary crown on Tuesday, so he's trying to get me in to replace it--he needs to trim gum tissue before he can do a permanent crown, just waiting for my medical issues to be resolved first), and two from the surgeon's office. This would be Dr. M-the-surgeon, not Dr. P. I didn't like Dr. P very much. I was not supposed to see Dr. M-the-surgeon for at least a week, but I guess Dr. M-the-GI was bugging him to get me in. Dr. M-the-surgeon had something open up for this Friday and wanted to meet me first. As in, surgery this Friday.

It was odd to get the message, call them, and have the secretary say, "Can you be here now? Like in half an hour?" Yeah, OK, Woodstock to Johns Hopkins in half an hour. In the rain. Not that I have a problem driving in rain, but 695 is always backed up when it rains. Anyway, I headed straight there. I don't know why I hurried, because it was over an hour before I even saw the PA. Two hours until I saw the surgeon. Only the cleaning crew was there when I was leaving--the doors were locked where patients normally leave! I didn't even think about it until I got on 83 (right near the hospital) and it was basically stopped traffic. Baltimore at 5:30! Doh!

The surgeon is going to do the endoscopy and cholecystectomy (removing my gallbladder). Actually, lap chole. He's confident that he will not need to open me up, that it can be done laparoscopically. Hope so! For the endoscopy, he will check out my esophagus, stomach, and duodenum, and he'll take some biopsies. I'm pretty glad that will happen while I'm completely out rather than under heavy sedation. I know I wouldn't remember anything while under heavy sedation, but it was really freaking me out.

I'm nervous to have surgery, and I know I will be really nervous tomorrow morning. But I do feel it's the right way to go. It was not a hard decision to make.

Today I have to go in for a presurgical workup. I will be annoyed if they take more blood, because I think they can use the bloodwork I had last Wednesday. I think they did the tests that are usually done preoperatively. Well, we'll see. The have to do an EKG anyway (although I had one in October), so I know I can't get out of it.

Ugh, have I ever said that I hate reflux? Yup, hate it. And the feeling of someone poking me in the ribs. I can't wait until this is all done. The surgeon said 85% of people have their pain resolved with this procedure. Hopefully I will be in that 85%. The PA didn't really help when he said (before the doctor showed up) that he had had pain just like mine, had his gallbladder removed, and it ended up not being the problem. What does that mean?? Anyway, the surgeon recommended asking for a month off work, just in case. He has got to be kidding. I can't take a month off. I have three sick days!

Better get ready for work. Um, or the dentist.

Kicking Myself

I had an attack last night, which rudely woke me up around 11:30 and ended abruptly at 1:30. (The only nice thing about the attacks is that I have no question whether they are over and I can go back to whatever I am doing, because the pain drops off suddenly.) When I woke up, I initially only registered reflux, and I tried to ignore it (because I was sleeping). But it was really bad, so I sat up, which usually helps my reflux. Then I realized I was in a lot of pain. Et cetera, et cetera.

But here's why I am kicking myself:

When I met with Dr. M, the GI doctor, he was trying to figure the whole thing out and find a connection between the pain attacks and the reflux. I had told him that Prilosec worked wonders for the reflux, and he asked if it helped to take a Prilosec during a pain attack. It had never even occurred to me to do that. I just took ibuprofen and hoped for the best (although my pain laughs in the face of ibuprofen).

I should have tried it last night!!

This was probably (well, hopefully) my only chance to try that before the endoscopy on Thursday. See? Kicking myself!

I Like This Guy

I saw a new doctor today: Dr. M, a gastroenterologist with Johns Hopkins. He was great!

He listened.

He explained.

He listened more.

He asked questions.

He thought.

He suggested.

He planned.

He wants to see my gallbladder out ASAP, given that I have signs of sepsis. However...

First he wants to do an endoscopy, to see how bad my reflux is, assess the damage it has caused, and see why I might be having the reflux. He does not think the reflux is related to the pain episodes. He sees it as a separate and equally concerning issue. That's because I have it pretty much every day, unrelated to what I eat (I wake up with it), and because I am having swallowing problems. Yeah, I haven't mentioned that one on the blog. Anyway, Dr. M wants to do the endoscopy before I have the cholecystectomy, because then he won't have to wait for me to heal from surgery, and because there's still the teensiest possibility that the pain attacks are not being caused by my gallbladder. But he thinks they are.

He thinks I probably passed a stone at the ER. While I was waiting to be seen (yes, read that with sarcasm). He doesn't understand why the ER doctor did a CT scan and kept looking for other causes, given that my liver enzymes were through the roof. Oh, and the fact that there was a .9 cm stone in my gallbladder!!! "Tiny little stones just like everyone has," my butt. Dr. M thinks I might have passed a stone with each pain episode, or there might have been just one or two that have hung out in the ductwork, causing problems. One almost certainly was blocking the hepatic duct at least twice: once while I was at the ER, based on the liver enzymes on the bloodwork, and once when I had the HIDA scan. Dr. M said there might be one still just "rattling around" in there, going up to the liver and down toward the sphincter of Oddi (where the bile duct meets up with the intestines). That could be causing some of the irritation and pain I have been feeling between episodes. That also could account for the septic symptoms. When the stone blocks the common hepatic duct, the bile backs up into my bloodstream. Nice! It would also cause plain old irritation of the liver. He wasn't sure that explains my blood clotting problems, though, and he is going to check clotting factors and take a look at my platelets. He thought maybe the combination of stones and Accutane might be doing something in that area.

He sent me straight to the lab, which was no surprise. Assuming I would need to sacrifice some blood but not knowing exactly what he would want, I had fasted this morning and not taken my Accutane. He ordered lots of tests. Two were at my request: blood sugar and cholesterol, just because I've never had them checked (and as long as I was fasting anyway).

I had a wonderful phlebotomist, a grumpy old black lady who informed me that she is one of only two good phlebotomists in the area (ha, she hasn't met Dr. D, my dermatologist). When I warned her that I am a tough stick and finding a vein usually requires multiple pokes and some digging and here is a good vein, she ignored me. But she got it in right away, no digging necessary. After filling the required seven--that's right, folks, seven--vials, she informed me that whoever said I had bad veins or had to poke me more than once (um, every Navy and BYU phlebotomist) was a fool. I completely agree. I love this woman.

So, the plan is:

-December 3, I will have the endoscopy, which Dr. M will do at the Johns Hopkins Outpatient Center. Boy am I familiar with that place! Both of Laynie's CIs were done there, as well as all of her mappings.

-I will have an appointment with another Dr. M, a surgeon. This will probably be after the endoscopy. I'm hoping for the day after, but we'll see what they offer. I'm kicking myself for leaving my phone on vibrate, because I missed a call from Dr. M-the-surgeon's office about an hour ago. I called them back literally less than 10 seconds later, having just missed the call, but naturally they were closed.

-I can't remember if I blogged it, but Dr. P, the first surgeon I visited, had scheduled me for surgery for December 3. I talked to them earlier today. They needed to cancel anyway, and I was wimpy and just said that I would have to call them back after I looked at my calendar. Not going to call them back. Not comfortable with Dr. P. Hopefully I like Dr. M-the-surgeon better.

Seriously, the timing on all of this could not possibly be worse. I have three students in crisis (ok, let's be honest, it's not the kids who are in crisis), and one student in semi-crisis. I have consultation meetings, pre-meetings, IEP meetings, planning meetings, due process meetings, and observations over the next few weeks. Plus presenting at the speech meeting in three weeks, which I have not even begun to think about. Well, it is what it is. I'm glad that I told people at work that I was having some health problems. At least they won't be surprised if something pops up on my calendar and I have to miss a meeting.

Alright, now I want to blog about more interesting things. New post!

How Do I Feel?

I don't know how I feel. Confused. I met the surgeon yesterday, and he felt like I was a classic candidate for getting my gallbladder out. That's right, folks, I found a surgeon who wants to do surgery.

I'm pretty cynical about it. I don't know how much of that is my denial talking, though, because my fear is that he will take my gallbladder out and see that it was just fine. I'm afraid that going to a surgeon when you have a problem is like when parents take their child to our local children's hospital wondering if their child has autism (or ADHD, or whatever is on their mind). The child typically gets the label the parent thought they should have. Sometimes you get what you are looking for.

On the other hand, a little part of me is afraid that he will start the procedure laparoscopically, see something big, and maybe open me up. Or just close. Maybe he won't know what to do.

Here's an argument I keep having with myself (um, not aloud):

Maybe it's all in my head, and I don't really have a problem. What if it's just related to my back pain?

Hm, back pain this bad?

Well, no, but pretty darned bad.

Back pain that involves reflux and stomach pain?

The reflux might not be related to the pain. The timing might just be coincidental. And sometimes I don't feel any.

Please, you've seen larynges damaged by painless reflux. So how do you explain the lab results?

The liver enzymes could have been from Accutane.

But Dr. D (derm) said not that high. And Dr. P (surgeon) said that numbers like 72 and 151 like right now are probably Accutane. Not 300s like during the ER visit. And what about the white blood cells?

I don't really have an explanation for that. Maybe I was fighting off a cold at the time.

Yeah, uh-huh.

It doesn't happen in relation to food. Cindy says my symptoms don't sound like hers at all. Except for the mind-numbing pain, but even that is way longer than her 30-45 minute attacks.

Good point, but since when do you do things like everyone else? Dr. P said not everyone has the attacks in conjunction with fatty meals. Some people have a less typical presentation.

If my symptoms are not typical, how can he be so sure he has identified the right problem?

Umm.. well, they are typical in general, just not down to every detail. I think Dr. P said that some people have more reflux instead of the more typical gallbladder attacks following a fatty meal. It was kind of hard to tell with his accent. And Dr. P noted the abdominal tenderness.

Yeah, in the middle. Not on the right side.

Hey, Dr. P and Dr. C (family practice doctor) both said you can have tenderness in the middle with gallbladder problems. Dad said that, too.

I'm not convinced. I guess we'll just have to agree to disagree. And now the money question: how can he assume it's stones and not a tumor or cyst? Just playing the odds?

...

Do I hear crickets chirping?

So there you have it. I don't know if I'm in denial or just being a smart health consumer.

I definitely need a blessing. Maybe I'll co-opt Julie's husband. Funny coincidence: a girl I work with turned out to be a member of the church. It's just funny that we don't work at the same schools but we ended up on the Pals team together (the team that services kiddos in private preschools and daycares). Julie's husband gave Laynie a blessing before her CI surgery, because at that time we were going to the Deaf Branch, and Laynie didn't want any of them to know about her CI. Of course, now we're going to a hearing ward, and I do have home teachers... but I don't like one of them. I know it's not his fault that he has ADHD and is kind of Aspergery (no, he's never actually said that he has anything, but it's so obvious), but I'm just not very comfortable with him. Hm. I do LOVE my other home teacher, this Jamaican guy. But I think he is a Priest, not an Elder, so he can't give a blessing. He's still pretty new to the church. Sorry, people who aren't members of the church, I've probably lost you. I'll add a couple of links that might help.

I feel badly for not liking one my home teachers. Sigh.

Oh, I guess I should answer the question of how I actually feel. Not too badly. Easily tired and getting weaker all the time. Sometimes I have a persistent pain in my right side (could be my bra). Fever all morning and afternoon, going down in the evening. I don't understand that, which drives me crazy. Why does it go down in the evening? I like to understand things. Umm... when my fever goes up, I get confused and have some processing problems (word finding, organizing language), but I haven't had that so far this week. I had a minor pain attack Friday night, lasting only an hour or two. The pain didn't get as bad as the first three attacks. I'd say it was an 8 on the old pain scale, which is much better than the big attacks, which were about 97 on a scale of 1-10. Anyway, I'm doing OK. I'm supposed to hear back from the surgeon's office today. They are trying to schedule a laparoscopic cholecystectomy for Monday or Tuesday of next week.

Back in Denial

After the test on Friday and especially that night when the pain came back, I was totally facing my problems. On Saturday, when I was still feeling the aftershocks, it was hard to deny that something was definitely wrong and would need to be fixed. I even sent an email to various people I work with, warning them that I might be out at some point for surgery. Until now, I had only told Cindy, a teacher that I work pretty closely with, that I was even having problems.

Now I seem to be going back into denial, which is where I've been for weeks. This morning I started thinking that when I meet with the surgeon, he will probably say let's wait and see. Or he'll send me for an MRI and not find anything. He'll say that they just didn't wait long enough when they did the HIDA scan, and that's why it looked so bad.

My mind is playing tricks on me!

So now when I get a response to my email, I don't even want to read it. I don't want to think about it. Because I will probably have to take it back when I see the surgeon and he tells me everything is fine.

I Am a Health Hazard

My body is emitting gamma rays, even as I speak (OK, type). Cool, right?

Today I had a HIDA scan, which was not as bad as I thought, but the results were much worse than I thought. Honestly, I almost canceled the procedure earlier this week, because I thought my doctor was barking up the wrong tree. You see, I have had two episodes (well, now three: I'm coming out of one right now, which is why I'm awake at 1:30 in the morning) of what the ER doctor described as "epigastric" or "colicky" pain. If this is what babies have when we say they are colicky, let me tell you, it's no wonder they scream! I have pretty severe back pain, and it doesn't hold a candle to this.

I don't know why I haven't wanted to blog about this, and now suddenly I do. Maybe I was waiting until I actually knew what it was. I'm not sure I do, though, still.

For my HIDA scan, a very nice radiology technician or nurse or something, named Linda, started an IV (had to try two different places, sigh). Well, first she asked me the usual questions, like my name and birthday, whether I'm pregnant, and whether I still have my gallbladder. Are there doctors dumb enough to send a gallbladderless patient for a HIDA scan? You see, a HIDA scan checks the function of the gallbladder, sort of, and the condition of the bile ducts. She asked if I had had an ultrasound or CT scan, and when she heard that I had had both, she seemed to think that this test was overkill. I was still thinking yup, this test is going to be a waste of my money. Good thing I have excellent insurance.

Through the IV, Linda injected a radionucleotide, meaning some radioactive material. She explained that a camera would pick up the radiation coming from my body and track it as it moved into and from the gallbladder. When it was in the gallbladder, the second part of the test would begin: she would inject CCK, which would make my body think I had eaten a fatty meal. That would cause the gallbladder to contract, so that the machine could measure how quickly the bile emptied into the intestines. It could also "replicate my pain." Great.

So I laid in a scanner something like this, for about an hour:

The only difference was that the camera (the large, hovering rectangle) was much closer to my body. Maybe three inches from my chest. And my head was in an arc of machinery. It was a little claustrophobic at first, but I got used to it.

I laid there and watched Linda surf the web, checking out tote bag projects on Joann.com. She also spent a while chatting with another tech/nurse person. It was debilitatingly boring. Finally, after an hour and five minutes, the machine beeped, and Linda checked it. Nothing in the gallbladder. She had me lay there a while more and tried again. Nothing. She had me sit up for about 20 minutes, and she checked again. Nothing. She tried two other positionings... still nothing. She had me sit up for another 15 minutes. She tried all three positionings again and let me out of the contraption again. She said to go wait in the little waiting area in the hall while she went to show the radiologist my results. She said that they probably would not need to do the second part of the test.

While I was happy not to have the CCK and experience pain, I was thinking that this probably was not a good sign. The only thing I could think of was that the tracer hadn't made its was to the gallbladder, for whatever reason. Or that it had but was stuck in there.

After about 15 minutes, Linda came and got me to remove my IV. I was done. As she was removing my IV, she asked me again if I still had my gallbladder. Oh, my, that could not be good.

Linda said that the radiologist would take 3-4 days to review my scan and would let my doctor know, and my doctor, Dr. C, would call me. Remembering that the last time Dr. C was supposed to call me with lab results I ended up having to call her after a week and still not hearing back for another two days, I planned to call her on Wednesday.

Imagine my surprise when Dr. C called 20 minutes later. I hadn't even gotten home! She had me pull over to talk. There was no sign of the radionucleotide past my liver. Complete ductal obstruction. That's why Linda was asking if I had a gallbladder: nothing showed up there on the scan. Brother. Dr. C asked if I had had any more pain, and I really had had only minor pain since my last big episode, October 10. My fever was back all this week and I felt like my stomach was working something up the last two days, but nothing big yet. She warned that I might have another episode soon, if not from the obstruction then from the radionucleotide causing cramping. ?

Then she asked if I have a surgeon. Of course not... Why on earth would I have a surgeon? She had me take down a name and phone number. I have to call the surgeon on Monday. I still need to see the upper GI doc the day before Thanksgiving, since my reflux is still bad.

I wish I had asked if she knew why I had a total ductal obstruction. On the ultrasound, there had only been tiny gallstones. I guess the ultrasound could have missed something, or they may not have been as small as they seemed. I wonder if the CT scan should have picked them up. Anyway, there are other things that can cause a duct to be closed off, like the big casino. But I'm operating under the assumption that it's not that serious. What other assumption can I operate under and remain functional? There are other possibilities, too, but a nasty old gallstone parked in a duct is the most likely culprit.

So, as I mentioned before I'm coming out of a pain episode, which lasted about four and a half hours. I'm getting better at dealing with them, but boy, does time crawl by. At least I don't have to go to work tomorrow.

I put in a call to my dad. He's a nerdy physician assistant. I trust him more than most doctors. I do hope my doctor is a good one. At least she was observant enough to notice that my liver enzymes on the ER bloodwork were both over 300, which the ER doctor either overlooked or chose not to pursue.

Here is "me looking on the bright side:"

-I have great support from Laynie and Katie.

-I'm sure that the administrators and other powers that be, with both my employer and my current placement, will understand. (Not pay me for not working or anything, but at least not give me a hard time if I need to leave work with pain or take a few days off for the surgery.)

-I have excellent health insurance. Whew.

Do I Have a Tale for You...

I had the privilege of spending the night in the ER at Johns Hopkins. What an experience!

During my four hours in the waiting room (while in excruciating pain, mind you) and my eight hours in and out of Bed 28, I saw and heard some exceptional things. Actually, I think they are not exceptional but typical, which is sad. Let me present you with a series of vignettes.

A woman starts an argument with another woman in the waiting area. They move to the lobby, where things become physical. Right in front of the main security guard's desk.

A man in a wheelchair (NOT unusual--probably a quarter of the people waiting went out and got wheelchairs for themselves) "gets loud" with a woman in the waiting area. A female security guard tells him to cut it out, and he blames the woman for making him yell at her. The security guard tells him, "You a grown up man and you sayin' she made you? Can't nobody make you. You a grown up man." A valid point, to which said man replies, "Now you mad at me? I didn't do nothing, you tell her she gotta quit makin' me mad." The guard assures him that she is not mad at him. Wheeling him out, she continues, "I just disappointed that you say somebody made you, when you a grown up man and you supposed to know how to behave. Now, you know you can't stay here when you loud."

Sylvia Squires wanders through the waiting area aimlessly. She sits in various chairs, finally parking it at one of the registration windows, wanting to have a chat. The woman at that window seems to know her, and she ignores her. After a moment, the woman leaves Sylvia alone. Sylvia (I know her name because she said it so often) initiates a conversation with herself. Although I was actively trying to ignore her, I could not help but hear some of what she said, because she was three feet away from me. Sylvia is 51 years old, with two grown daughters. Their fathers were not Mexican. Her current boyfriend, however, is. He is a mean drunk who cannot hold his liquor, and he smacks her around all the time. He tried to throw her through a window. Sylvia, on the other hand, can drink all day and all night, without any deleterious effects. She hates Mexicans, because they have too many kids, like leeches. Sylvia is a sociable person, loudly inviting everyone in the waiting area to go out for drinks rather than wait any longer. As the night wears on, Sylvia becomes increasingly belligerent. Each time a nurse calls a patient's name, she yells, "Squires?? Do you have Squires?" They firmly tell her no, and she lets them know that they are smart mouths, and that she has been here since 6:00/4:00/5:30 (fill in a random time). Sylvia runs into an acquaintance, who is at the security desk, complaining that she has waited too long and would like her IV out. After 15 minutes, a nurse is available to do this for her. The friend looks back into the waiting area and notices Sylvia slumped over in a chair; she calls out, "Sylvia, are you OK?" No answer. Sylvia has fallen asleep. When I leave the hospital, eight hours later, Sylvia has not moved.

A young couple comes in, the girl obviously having abdominal pain and feeling poorly. She sits next to me and leans against her boyfriend, who stands in front of her, murmuring in Korean and stroking her head.

A man does laps in the waiting area in his wheelchair. He bumps into things and blocks people's path. 

A man comes out of triage reeking of urine. His dirty clothing and unkempt appearance bespeak a life different than mine. He encounters a "brother" in the waiting area, who is similarly attired and sports a black eye. Pee Man stands near the security desk, chatting with his brother, while the security people gag. The same female security guard who escorted loud man out of the building takes it upon herself to grab a can of air freshener and spray it directly at Pee Man's back for at least 10 seconds. This does not even touch the funk in the air, and it does not phase Pee Man. She goes through a set of double doors; five minutes later, she emerges with a set of scrubs and a plastic bag. She informs Pee Man that she cannot handle his stink, that he must change. He is understandably worried that someone might steal his blue jeans, and she reassures him, instructing him to carry them in the plastic bag. Pee Man reluctantly enters the men's bathroom and reappears in bulky scrubs, without the plastic bag. He leaves shortly, but for the next several hours, every person who walks through the ER waiting area (the elevators to the peds ER are at the back of the adult ER waiting area, so parents dragged children through the room from time to time) comments on the smell. An hour later, a triage orderly travels throughout the room, spritzing liberally with a fruity spray, smiling like Miss America. Her journey was more welcome than any beauty queen's.

In a monitored bed in the ER, a diabetic woman is there because she stopped taking all of her meds. Although she doesn't have any family and really doesn't care, she accepts the central line that must be placed in her neck. She asks for food and is told that she can eat a bunch of bananas, or she can have orange juice. She weakly accepts the juice.

Later, in that same bed, a man with a thick Baltimore accent has difficulty answering questions from the nurse and doctor. He provides tangential information with each answer, but I will spare you that. Has anyone ever discussed diabetes with you? No. So, when you were in the hospital a month ago, did they tell you that your blood sugar was high? Um, yeah, they gave me a shot for it. Oh, they did. And did they give you medicine to take home? No. Did you follow up with your primary care doctor? No. They didn't tell you to follow up with your primary care doctor? Well, I've been taking the medicine my doctor gave me. Medicine for what? Diabetes. Which doctor gave it to you? My regular doctor. So your regular doctor is treating you for diabetes? Well, yeah. Did you take your medicine today? Of course. Later: Does this hurt? Yes. Where does it hurt? On my leg. Where on your leg: the front or the back? What? Where exactly does it hurt? Where does what hurt? Your leg. When I push here, does it hurt on the front or the back? The back? OK, this is the front, and this is the back. Does it hurt on the front or the back? Oh, the front.

A woman lies snoring in a monitored bed in the ER. She was brought in because she was searching a manhole for a cat. There was no cat.

A Little Disappointed

I saw my dermatologist again yesterday. He told me that he was a little disappointed that my skin hadn't cleared up very much yet. Um, yeah, same here. He thinks it will just suddenly become much clearer, like practically overnight. Either that or he'll have to up the dose. Huh? Picklefrance, as McConn would say. At least my forehead and nose have only had maybe two zits this summer, compared with SEVERAL EVERY DAY, like they used to get. Like my stubborn jaw and chin still get. The medicine seems to be working from the top of my face to the bottom.

Dr. Damm managed to take my blood with minimal digging around, which I appreciated. Let me say again that I love having a dermatologist who used to be a phlebotomy tech... one stop shopping.

After my pregnancy test came back negative (duh), I got to take the FDA-mandated online quiz, which is always fun. The questions are different every month; here are a couple from the one I took today.

I got 100% on this quiz. I won't give away the answers, in case you, dear reader, are also jumping through the Accutane hoops. You're going to have to apply your intellect, as did I.