4 September 2009 - Started PT at HSS this time. The other place had gone to didn't do much so thought I'd give the big guys a shot. I had a wonderful therapist who was knowledgeable about my multiple problems and willing to work and adjust things depending on how I felt. It makes it so much easier when you have someone like that to work with. I
started going once a week up until my trip to Italy on 2 October.
11 September 2009 – Had cervical epidural no. 3. This time I unfortunately had a spinal fluid leak that gave me one murderous headache. It's incredible how much pain some spinal fluid can give a person! Thankfully it was done on a Friday so I had the weekend to recover. This epidural didn't do much either. I suppose overall I improved maybe 10% if I had to quantify it, but that was after three epidurals three months in a row. Hardly worth going through that again for such minimal pain relief.
2 October 2009 - Off to Italy, a bit weary but being optimistic. Took both my cameras - ended up being too optimistic as carrying one was all I could handle. A bit depressing not getting to use my Hasselblad. From 3-7 October I was in the Cinque Terre. I had planned this trip before my neck had become such a nightmare, and was worried I wouldn't be able to do the hiking around the CT, which was the main reason I wanted to go. I've been wanting to do this for so many years and the way my body is falling apart, I figured the sooner the better. The trails were very steep and narrow and since I'm afraid of heights it was a huge challenge, but I am so happy I did it. For the most part my hips held up and I iced every night to get my neck to stop hurting. I think the movement actually was good for my neck in the long run. I was still in pain - maybe it was just the endorphins from so much activity. 7-13 October I was in Firenze and did a lot of walking around, even climbed the 400+ steps to the top of the Duomo. It was a personal challenge I had set myself and couldn't believe I made it. Won't be doing it again – but was SO worth it! 13-18 was Venice. It started off good, a lot of walking but nice and flat, and then on the evening of the 15th I became violently ill with some sort of tummy bug. I couldn't even keep a sip of water in me for over 24 hours. I spent all day on the 16th in bed/in the loo and could barely sit up or lay down unless I was curled up on my right side. Saturday I was determined to not waste my last day in Italy in bed so made it to a chemists and he gave me immodium, which I promptly took. It's the only thing that got me home in one piece, and I mistook it for getting better. Worse off for me. I was ok on the flight, thankfully, and then went to work on Monday am. I was still running to the loo regularly and by noon was so sick to my stomach everyone made me go home. I woke up on Tuesday, the 20th and there was no way I was going to work. I made an appointment with my dr which unfortunately wasn't until the afternoon. I barely made it there, and spend most of the time waiting for her in the loo. She made me do blood tests and wouldn't let me leave until they came back. She then set up an appointment with a gastro for the next day to have an endoscopy. She also gave me a script for an antibiotic. I left the office, made it downstairs and out the door, then ran back in to use the loo again. Made it to the chemists, and barely had time to get home before I had to go again. I spent the next hour or so running back and forth and then scary time! I saw blood. That freaked me out. I rang my dr, at this point her office was on the service, left a msg and she promptly rang me back and said to get to the hospital. Thankfully a v. good friend came over to take me as the dr felt I probably shouldn't attempt to go by myself, not having eaten or drank anything and being dehydrated and about to pass out.
20 October 2009 – The joys of the ER begin. Thankfully I didn't have to wait too long in the waiting room with all the icky sick people (yes I know I was one of them but still…) This was a trick though, because once I got into the ER, they kept me there for 24 HOURS as there were no beds available. It seems my dr had thoughtfully called everyone she knew at the hospital and I was now a celebrity of sorts, which is all good when you feel like you're about to die. The worst part of the ER was not having my own loo – since that was where I was spending most of my time. Even the IV fluids were going right through me. My parents came in from the island and waited with me until after I had a CT scan around midnight. This finally revealed that I had one hell of an angry gut. The gastro guy, Dr. Chun (he was quite a laugh) came by and said that I needed to have a colonoscopy but not till Thursday as they wanted to give my body a chance to calm down. The funniest thing he said was that they were going to give me the prep on Wednesday night. I couldn't stop laughing. I said there was no way I was taking anything that was going to make me go to the bathroom more than I was, it wasn't humanly possible to go more than I was. So he made me promise to not eat or drink anything. Like I even wanted to – the nausea was so bad that they kept giving me anti-nausea meds with my IV. After 24 hours, the last few of which I had to listen to one of the most annoying human beings on the planet complain that he didn't want to be in the ER – even though his dr had sent him there directly to have a defribulator put it as quickly as possible – and still he wouldn't leave, only kept threatening to. Now as a side bar do not ever ever ever go to Lenox Hill ER under any circumstance. By the time I was finally moved to a room, they had two beds to where one was meant to be and I was literally blocked in on each side. Every time I had to get up to go to the loo (about every 10 mins) I had to climb to the foot of the bed, with my IV bag, and try to find an empty and relatively clean loo.
So finally around 7pm on Wednesday I am told there is a room for me. YAY! I get wheeled up to some floor, and the room hasn't been cleaned, so they leave me in the hall. Ironically in front of a copy of a Monet painting of VENICE! Seriously, I couldn't make this up! Finally housekeeping comes to clean the room and I have to listen to the woman complain about her job – all the time trying to be patient but REALLY needing the bathroom. Turned out my roommate couldn't get out of bed which was a blessing for me since I couldn't get out of the loo.
Thursday morning I get woken up at the crack of dawn and taken down to have that colonoscopy. I barely recall any of this b/c I was so weak at this point and then with the drugs they gave me I was delusional for the rest of the day. Random doctors kept showing up to see me and I couldn't tell you what they said. In the end it turned out I had a very bad case of colitis. Of course the doctors couldn't decide if this was just from an infection I caught (my vote) or that I now had IBD (inflammatory bowel disease). It is surprising how dr's really want it to be the more serious, long term thing. I kept telling them that I had a perfectly normal colonoscopy over the summer and that I did not randomly develop IBD out of nowhere, but they think they know everything. Which they don't. But they don't like it when you tell them that. Unfortunately for their egos I tell them regularly.
So Thursday night I try to eat a little something, drink some water, take it easy. They are pumping me up on antibiotics and IV fluids and I'm still going to the loo, but maybe only 3x an hour now. Hey it's progress. Thursday pm/Friday am this daft intern comes in to draw blood. I haven't mentioned how much blood they took from me this whole time, as well as they had to keep moving the IV from one vein to another. Human pin cusion at your service. So this intern can't get a vein. He tries a second time. No luck. He has no clue. I tell him he gets one more try and that's it. He thought I was kidding. I said NO, I'm not kidding, I'm not here for you to practice your ineptitude in drawing blood. He didn't get it the third time – no surprise there – and I kicked him out. He sent in his resident a couple of hours later. I told her straight out that if she didn't get it the first time, that was it. The only people that are good at getting my blood are the phlebologists. My veins like to hide and move. I warn everyone that unless they're good, don't bother. But these mini wanna be "dr's" have egos way too big for them, so she tried…and failed. She truly thought I was going to let her try again. If there is one thing I've learned over the years it is this, dr's don't really care about you. They only care about themselves. I no longer have any problem telling ANY dr what they can or can't do – no matter who they are. So she said something about waiting until the phlebologist do the draw in the am. DUH! By Friday I was still icky but I guess blood tests were a bit better - the people who know how to draw the blood took it without a problem – and the dr's are saying that I could probably go home on Saturday. By Friday afternoon I couldn't take it anymore and just wanted to go home so I lied and said I felt a lot better, forced myself to eat a banana – which made my gut swell up to some crazy size that I could barely close my trousers – but it worked. I got home Friday night! My parents stayed with me until Sunday night which was v. helpful as I was still weak and not great.
I had to go see the gastro dr on the 28th and even though I had had a bad reaction a million years ago to flagyl he felt that was the best medicine for this so he put me on it 4x a day. It had some of the worst side affects – metallic taste in mouth was one of them, headaches, oh and you can't drink any alcohol at all. Not that I was even contemplating that, but supposedly if you do you can get violently ill from the combination. Beware. After being on the meds for week I was told to stop them. Unfortunately whatever was making my gut angry was still around and within three days I was violently ill again – running to the loo, couldn't keep water in me even. Had to ring the gastro over the weekend as I even developed a fever. He put me on the meds again. During the time from the hospital to now I had been doing stool samples and blood tests constantly. It was getting boring already. Oh and more colonoscopies. Fun Fun Fun! The gastro couldn't decide for sure if I had IBD (even though I swore I didn't he just wouldn't take my word for it) or an infection, but since I was responding to the flagyl he decided to try something new and I had to wean myself off of it for two weeks. We started 4x a day for 5 days, then 3x a day for 3 days, then 2x a day for 3 days and then 1x a day for 4 days. Thankfully when I stopped I didn't get crazy sick again, but I have to say my gut, 3 months later, still isn't what it was. But at least it isn't like it was in October!
