Well it's been a very long time since I've updated and with good reason. Well, I had a good reason because bad things were going on. I am definitely a medical conundrum. I will try to do a brief summation to catch up.

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!

Good and bad

Well it's been quite a weekend. Thursday's prep was okay, it definitely could have been worse. I took the two tablets that came w/ the prep at noon, for lunch I had jello and 8oz of broth around 14.00 and around 16.30 started to cramps all over. I figured I should go home then in case they got worse. I started the drink about 17.15 when I got home, just wanted to get it over with. Unfortunately the doctors office said I couldn't take any valium that night to help sleep so I knew it was going to be a rough time. I drank about 8 oz. every 10-15 minutes. I made sure it was cold and I used a straw and put it way back on my tongue so the taste wasn't as bad as it would have been. I also had lemon sucking candies between each glass and that definitely helped. A few times my throat just closed up and I had to spit it out - it had a mind of it's own. I didn't really have to go to the loo for over an hour, and I was pretty much done with it by then. On and off for a little while and then just gassy for the rest of the night. I slept for a little while but was up for good at 3am! My mother was sleeping over and she woke up around 4.30am and we were up for the rest of the am.

We left the house extra early at arrived at the doctors office at 7.50am for an 8.15am appointment. Unfortunately we were told after a few minutes that the doctor had been called into emergency surgery. It happens. I said I really didn't want to have to do the prep again and they assured me they'd get the procedure done that day, and to come back at noon. I was none too happy, between my neck / shoulder agony, starving and lack of sleep. We went all the way back home and miraculously I passed out for a couple of hours. Before we left to go back to the doctors I rang to make sure he was still going to be there, and was told yes, definitely come in. So off we went again. When we arrived at exactly noon, I had a funny feeling. By 12.23 I told my mother that in 7 minutes I was going to go postal. At this point I was beyond hungry and in a lot of pain w/ my neck. Then one of the staff asked me to come to the back with my mother. I knew that wasn't a good sign. He said the doctor was still in surgery and they were expecting him at 14.30, but there was no guarantee. I could 1)wait, 2)wait for another doctor but that wouldn't be till about 15.00 or later, or 3) reschedule. I said 3 wasn't an option as I barely have any days left off and unless they were going to pay me, it wouldn't work. Wasn't keen on a different doctor doing it, but the main thing was it was even a longer wait. I went with my gut and said I would stick it out for Dr. A. Thankfully they also let me take a clonazepam to relax and gave me an ice pack for my neck. For the next two hours my mother and I sat in the back waiting. Thankfully at 14.35 one of the staff came back and said to change. I let out with such a scream! Who would ever have thought I'd be that excited for a colonoscopy. When the doctor came in I gave him a kiss! He was v. sweet and said he wouldn't have not shown up for me. I really do like him, it's so hard to find good doctors and I am v. lucky I have a few v. v. good ones. They knocked me out and all was over within half an hour or so. Dr. A said I had a v. good looking colon and he had taken biopsies but really didn't think they'd say anything. So it's v. good all looks well but we still don't have an answer as to why I keep getting the peri rectal abscesses. Oh well, I've never been easy to diagnose so why start now?!?

After we left the office on the way to get some food, I received a call from Dr. Panagos' (physiatrist) office saying that they would have to reschedule my appointment for the 16th to the 22nd. I nearly lost it and started crying. I said there was no way I could make it another week and a half without some pain relief and please to sort something out. They asked if I was an existing patient and I said yes, and then they said they'd have the doctor ring me. It was already about 15.30 at this point and I didn't think I'd hear from him by the end of the day.

Amazingly he rang me on Saturday am. He even apologised for ringing on a Saturday. I told him he could call me whenever he wanted! He suggested taking Naproxen 500mg twice a day (not doing a damn thing) and taking two valium for sleep (doesn't help, the clonazepam seems to work better but still not a great sleep). I told him my MRI was scheduled for that afternoon and he said that was good and he should have the results by Tuesday. I did email him yesterday to tell him how painful the MRI was, and that the hospital said the images would be online by Tuesday (today) morning at the latest. The last time I had one 8 months ago for my neck, lying down didn't hurt anything like it does now. 20 minutes of lying flat on my back almost killed me. I could barely move my arm and neck after the test and the tech even had to help me up. I was such a wreck for the next day even! They did give me a disc then with the images but I have no idea what that means. Dr. P emailed me back last night and said he'd ring me today after he saw the images but sadly it's 15.50 and I've still not heard from him. I did leave a message with his nurse but haven't heard from her either. I am just hoping he has a solution for pain relief and we can schedule it soon so I have something to look forward to, because I am so wiped out from this pain I just keep wishing Henry VIII was still around so he could chop my head off!

And the best news of all has nothing (sadly) to do with my health but it's still amazing. I am an aunt again! Now I have a beautiful niece, she was born v. v. early on Saturday!

Going on week no. 3

with the neck and shoulder pain. It's not gotten better at all. Last week the physiatrist gave me a taper pack of prednisone. Did absolutely nothing. Nil. Nada. Zippo.
I spent the wkend at my parents trying to not move b/c when I move it hurt more. I tried the shoulder sling but couldn't really tell if it made much of a difference or not.
Monday I rang the physiatrist and made an appt for next Tues, the 16th. It was the first available. Tuesday I was still dying so I rang back and got his nurse - yay a live person. She was very understanding and helpful and said she would talk to him and get back to me. She did in a couple of hours and asked about the pain, if it was the same as back in Dec. I said no it's worse, so she said the dr wants me to have another MRI of my neck. I asked if we should do my shoulder but she said he's pretty sure the pain is originating from the spine, so that's what we'll do. It's scheduled that for this Saturday. In the meantime he gave me Valium to take so I can sleep. I took one last night at 21.00 and ended up waking up at 5 this morning. When I got up to take a shower I was loopy and walking into doors and dizzy and thought I'd fall down in the shower. How can people enjoy this feeling? If it at least got rid of the pain, then I might not mind as much. Anyway I hope the MRI results are quick and that there is something the dr can do on Tuesday to get rid of this major pain because I can't take much more of it, mentally, emotionally or physically. Once we (hopefully) sort the pain out then we have to figure out what to do next. It's one thing having stenosis, but it's another when you have HEDS thrown into the mix. None of the normal options seem available.

Today I have to do the prep for the colonoscopy tmrw. I am pretty nervous since just sitting kills my neck and back and I know I'll spend most of the evening in the loo. Oh well, at least I'll get it over with. I have to say though reading about this HalfLytely stuff does put one off, it sounds so gross. I had to do this once before but it was about 15 yrs ago.

And I was right again, unfortunately...

I didn't have a chance to write more after the last update because when I went to see the doctor he told me I had to have surgery again for yet another peri rectal abscess! He was in shock and couldn't suss it out, which made me feel even more worried. Two in one week is a bit bizarre. He asked if I had eaten when I was at his office and I said yes, so he said he could do it with local anesthetic. Anyone who has read my ER visit last year will know that there was NO WAY IN HELL that I would let anyone ever cut me without being unconscious again. I was quite happy to wait one more day with some pain than to have that happen again. So, that night my mother came in so she could go to the doctors with me. This time they had the demerol ready afterwards. Last time even though I told them I would need it they tried to fob me off with some percaset - which makes me puke my brains out.

I was out from work the day of surgery and the next day. I saw the doctor the day after and he was still perplexed, though happily this time he said that there was a lot of puss and not just blood. Of course I was told that I have to have a colonoscopy for sure, no getting out of this time. It's probably for the best as I've been so bloated the last few months and my insides are schizophrenic. The dr still doesn't think it's Crohn's, and I've done a bit of research myself. I suppose it could be but I don't think so. Not that I'm hoping for any one of these, but for all the symptoms I have I've narrowed it down to a few possibilities. Hopefully (touch wood) it's just IBS, and we shall find out in a few weeks when I have the colonoscopy.

The main problem was with timing as I was off to London on the 1st of May, just four days after the second surgery! I rang the airlines and asked if I could upgrade one way, and they kept saying nope, because you used miles for the ticket, but to ask at the airport. You'd think they'd be nicer to loyal customers! When I got to the airport I asked the check-in man, and he said he couldn't, but was at least nice enough to block the seat next to me. Only problem was that it was a bulkhead which was good, but not when you want to spread out as you can't lift the armrest. Oh well. When I got to the gate I asked again, and I have to say the woman working there was such a nasty cow! No sympathy let alone any assistance and such a bitch! I hope she has to have this surgery and then sit on her arse for 8 hours and see how she likes it! I normally wouldn't say that but she truly was an horrible person! So I get on the plane and ask one of the flight attendants if they could help me, and of course, she checks w/ her head person and no result. At this point I'm getting beyond desperate. I try to get myself sorted in the seat and have my legs over the arm rest onto the other seat, but of course I'm leaning on my right hip at this point and well, that hip was not happy even w/ the lido patch on it. After we took off I couldn't sit anymore so I made a little spot on the floor with blankets and pillows and curled up. Of course then another flight attendant comes over and tells me I can't do that in case we hit turbulence, blah blah blah. I looked at him and was about to cry. I told him the situation and he was kind, and said he'd see if he could get someone in the back w/ extra seats to switch. I didn't think he could because if I had three seats to lay down on I wouldn't switch either to a bulkhead. He came back to collect the rubbish from everyone and said he was still working on it. Fair enough - I held out as much as possible. Then he ran up to the front, leaving his cart just sitting there, and came back a few mins later saying he'd sorted out something and would be back when he was done. Miracle of miracles, he had told the first class purser my situation and that I didn't need any extra attention, just a place to lay down and the bloke had agreed. Thank G-d! This very nice man took me up front, showed me how to recline the seat into a bed and for the remaining few hours I was able to lie on my stomach. I would not have made it otherwise, that's for sure.

The first few days in London were a little rough but I managed okay. By the end of the week I think the cut was healed up for the most part. The flight back wasn't bad for the bum at least. The rest of me was not happy and I am so so glad I now order the wheelchair assistance because there is no way I would have been able to walk off that plane and through the terminal. My whole body was in pain from the pressure on the flight, plus all the walking I had done during my visit.

So now I'm back and have the colonoscopy scheduled in a few weeks. Yesterday I caved and rang my hand/wrist doctor because my right hand has been getting worse and worse and the last week with the camera threw it into pain overdrive. I believe it was over a year ago that I saw Dr. Melone and he gave me an injection. He said if it didn't work I'd need surgery. It lasted maybe a month or so and then, well, I had the whole ER and one surgery after another to deal with on the opposite end, so ignored it as much as possible. Lately though I've taken to rubbing my wrist in with lidocaine cream which seems to be the only way to get through the day. I am still wearing the splint at night, mostly, and it's not doing much of anything. Therefore, I caved and made an appointment to go see him. Trust me, I really don't want to. I don't even have many days off left for this crap, but I don't know if I can wait with the pain for another 7 months to have it sorted. I will hear what he says about the surgery and if it is a quick recovery or not and then will make a decision.

Also because of all that's been going on I've been quite remiss on my PT and the neck and jaw are acting up quite a lot. Started doing some PT last night and will be going to see the acupuncturist this week as well. Praying for some pain relief.

Like I always say, never a dull moment.

Don't you just hate surprises?

Well I do. Last weekend, the 18th, I woke up early am w/ lots of pain in my bum. The same kind of lovely pain I had when I had the peri-rectal abscess last year. I was none too pleased but hoped it was just sore from sitting the day before. The pain and pressure proceeded to get worse over the weekend. My biggest fear was that it would get so bad that I'd end up in the ER again. After that nightmare last year of being butchered it was the v. last thing I wanted. Also on the Friday I was having pelvic pain and thought I might have an UTI. So Monday am I rang my internist and made an appt for that day. I also rang the CRS and found out he was not in, but was able to get an appointment at 9am on Tuesday. They said if it was an abscess he would do surgery directly.
I knew that Dr. Aronoff would knock me out, unlike the hospital, but I still am a big baby when it comes to getting diced and sliced. Thank G-d for my mum who came in on Monday night so she could come to the appointment with me.
And yes, the dr examined me and next thing I knew I was being prepped for surgery. Never a dull moment around here! After surgery though he told me it was mostly blood that came out, no puss, and he was v. perplexed. I don't know about you but when the dr is more confused than me it makes me pretty uncomfortable. We are still waiting for the lab results, hopefully today. I went on Thursday for a post-op and he said it looked good but was still baffled. I had realised by Monday that both my dr's were going to make me have another colonoscopy after this second incident in a year, but thankfully not until this heals up. I was holding up relatively well this weekend and was able to get errands for my upcoming trip done. I leave on Friday for London, so again timing royally sucked. Not looking forward to sitting on a 7+ hour flight w/ a sore bum.
When I woke up this morning and sat up, I had a very sharp, stabbing pain in my bum. I felt it and it feels very sore and hard again, so I'm being very paranoid. Thankfully the CRS is a v. nice doctor and he said last week to ring him if anything didn't feel right, and since I am off to London, I am going to be overly precautious and see him today, just to make sure. If something else has gone wrong (hopefully not) I'd rather sort it out today than later in the week.
So that's the fun that's been my life lately.

consultations

After speaking to Dr. A yesterday, I tried ringing my internist Dr. Rosen. She was out so I sent her an email. I love technology. She rang me back this morning. It's good to have a doctor you know for so long and knows all your intricacies. She doesn't feel I should necessarily have the colonoscopy before since there is an infection to begin with, so that was good news and I'm happy to go with that theory. I really wasn't in the mood to have to go through that right now as well.
I also had asked her about my previous colonoscopy. I couldn't remember when it was, but it was way back in 1994! Another good thing about keeping the same doctor, they have all your records! It showed a little inflammation (colitis) but was non-specific and not something anyone was concerned with. I had been going through a lot then and having tons of tests so she wasn't thinking it meant much, even in hindsight. That' a relief. I am totally stressing about going to Dr. A's later though.

On a hip note, I've done a lot of walking the last four days and today my right hip is telling me to stop it. But still, it's a lot more then I've done in a long time, so I'm looking at it as progress. :-)

PS- I've just decided I'm throwing on a lido patch on the right hip - I can't deal with anymore pain!!!

Answer

Just spoke to Dr Aranoff and he said since there's still an abscess I have to come in for him to drain it and possibly put a clamp on it??? I have no idea what that means. Tomorrow at 11.45 is the designated time. He says it will be quick and I can come back to work after, and it needs to be done as he couldn't do the fistulotomy until it is cleared up anyway (he hadn't mentioned that before), so I don't have a choice -what else is new!?!

Also he said that since my drs want me to have a colonoscopy, that I should maybe do it b/f the surgery too. I will discuss that with him tomorrow but am not looking forward to that prospect.
Have I mentioned how much fun it is to be me lately???

?'s

After my dr's appointment last night, I have a list of questions to ask Dr. Aranoff about the upcoming surgery. My dr. wants me to see if he would do a colonoscopy at the same time, so I wouldn't have to be put out twice. I don't know if I'm up for this, but I will ask. She and my internist want to discover why this all happened.

I also wanted to ask some other q's re: anesthesia, wound care, etc. My dr. wanted me to tell him also that the abscess is about the size of a cherry now and not oozing much as the current wound is almost completely healed over. So I really don't have a clue if I will be making it till the 20th or going in sooner. I did just realise that Dr. A is out of the office today so I won't hear back till tomorrow. Fun fun fun.

At least I slept last night, I love those klonopins! First time I've slept through the night since I can remember. I knew the weather was going to be crap today so felt like I should at least get some sleep. Still pretty groggy though. Thankfully it's dead at the office so I don't have to worry. Tomorrow & Friday the big guys are in so it will be much busier.