Never, ever, ever do I have a dull moment

Ha! Why should I be stuck with only strep throat? It's me - nothing is ever normal! So fever and throat kept getting worse. Went back to dr's on Friday (and had to cancel my trip to VA for the wkend which sucked) and it turned out that in addition to strep, I developed infections on my tonsils. So after blood tests and more of the dr feeling how large my glands had swollen, she switched me to Biaxin. She also mentioned that if I got worse over the weekend I'd have to go to casualty to make sure I didn't have an abscess. Now the problem here is she mentioned the A word. It's illegal to mention the A word near me, b/c somehow my body gets ideas from it.
Well, thankfully my throat improved over the weekend, but why leave things like that? If something is getting better, then something else needs to get worse, right? Well that's my body's inane logic. So of course the bum started to hurt. I tried to ignore it, figured it was b/c I was spending a lot of time on the couch, blah blah blah. It's easy to try to rationalise these things away. Of course it never works.
So today I went back to my dr so she could check out my throat - happy it was improving but definitely not 100% yet. I'm not greedy, I'll take what I can get. Since I was there, and missed a lot of work last week (though to be fair I went in everyday except Tuesday, even burning with fever, because the office was moving and I had to sort it out) I asked her to just take a glance at my bottom and see if I was hallucinating. It's happened occasionally...
No such luck this time, she suggested I head downstairs to my CRS to see if he could take a look at me. It's so nice having most of my dr's in the same building, really saves on commuting times/costs! So I went downstairs where they know me oh so well. The receptionist was like - do you have an appt? I told her the situation and she said to have a seat. I thought I'd just make an appt, but she conferred with some people and then they spoke to Dr. A and what can I say, I've just got that special affect that he wanted to see me then and there. He probably thought I was imagining it again and just get rid of me. Well I shouldn't say that, he's actually quite sensitive to my plight and I believe would really love to suss out why I keep getting these, well, you know the word. So he came in, I told him, he took one look at me and was like, yep you've got an -------. So it didn't develop in my throat, but lucky me still got one on the other end! He wanted to do surgery tmrw morning but I told him I'd missed so much work last week. We agreed to Thursday, and he conferred w/ my dr about drugs in the meantime, so now I'm on Biaxin AND Flagyl. So I can't even drink myself silly about this blasted situation! I'm hoping I hold out until Thursday as I really want to miss the least amount of work possible. Fingers crossed!!!
Oh - and my blasted neck is still killing me! ARGH!!!

icky sicky me

My body devised a completely brilliant plan to stop the neck/shoulder from hurting so much - I got strep throat! I haven't had it in so long and completely forgot what a joy it is - NOT! Monday I had a sore throat, Tuesday stayed home and fever went up and throat got worse, Wednesday went to dr's and they did a rapid strep test. At least I'm on antibiotics now. Should have gone yesterday but I get sore throats a lot and most of the time they're just from acid reflux or post nasal drip. But today I knew I had something super special since my fever has gone up from 98.9 on Monday, then 100.4 last night and then 101.1 today. For most people this doesn't seem like a high fever, but my normal temp is about 97.8ish - so if I get anything above 98.6 I know I'm sick. And fever knock me out. I am praying these drugs kick in soon and I can hopefully get a night of sleep. This feeling cold and hot at the same time and my head pounding and my throat on fire is just not something I am enjoying. But it does make a change from the neck! That still hurts but I can't tell if it's not as bad b/c it's improving from the injections or I'm in so much pain elsewhere my brain can't register it all.

so not better

Neck pain is just horrid and not improving. This is not fun. I keep going to the gym every other day - sheer torture - but feel slightly better for a slim amount of time after. I walked a lot today at lunch as well hoping to relax the muscles. The needles just really pissed them off and they're not getting happier at all. I'm praying this improves by the 30th at the latest as I'm away that weekend and it will just not be fun feeling like this.
But still, the weather was lovely today and now I'm off to meet a friend for some vino. That should help a bit :)

OMFG!

This pain is incredible. I can't even find words to describe how much pain I am in. I have to get through two more hours of work, sitting here with ice on my neck and praying for the massive pain to subside.
If I ever want to do this again, please someome stop me! I just hope the relief is fast to happen and gets rid of this pain. I am so much worse than I was before the injections. My muscles are so angry it's not funny.

More poison

Last Wednesday we did another round of Botox injections. On an (high) average I'd say I got about 30-40% improvement during the middle bit. The first two weeks were horrid and after a few weeks I started to get bad again.
I've also discovered that I do much better when I'm not sitting in front of a desk all day. Anyone hiring tour guides for England? I felt pretty good when I was over there moving around a lot more during the day. Granted I was extremely blessed with optimal weather a well.
Anyway the Botox. We did three vials instead of two this time, seven injections total into different areas in my neck an shoulder. After I felt like I still had the needles in me for hours. The injections are pretty deep at least they feel it. They also anger my muscles and I've been getting progressively worse since Wednesday.
Last night was the worst so far. Complete meltdown with the pain. I kept trying to do all normal things as if I wasn't in tons of pain this weekend so perhaps that didn't help. I did go to the gym on Friday and actually felt a litle better after though it didn't last very long. I tried heat and ice yesterday bit I don't know if they helped or hindered. I also used the massage chair when I was getting a pedicure. It was mostly on my lower back and it felt good. No idea if that helped or hindered or had no effect at all.
At present on my way to work with the intention of going to the gym at lunch. Even if it is only for a bit I have to try.
Going to try to keep a better record this time because I didn't last time and it was hard to recall things months later.
Also my right hand where my last surgery was has been inflamed the last few days. Perhaps it's all connected. If only my right side felt like the left side of my body. It's so strange how one half dying in pain and the other barely so.

brief

no energy to go into it but after last week seeing my phyiatrist and getting another exam i am in even more pain than i was - plus i now have lower back pain shooting down to my right foot killing me - couldn't stand on my leg on sat.
so not in a happy place right now.

More testing

With the technology today you would think that they could make these 24 hour heart monitors less obvious and obtrusive. No such luck.
We are testing the heart now to make sure that's not the cause of all this neck and shoulder pain. Still desperate to get rid of the pain and still a perpetual guinea pig.
Oh it's fun to be me!
At least this one isn't painful, just inconvenient.

Having a rough time of it and came across this site. Seemed to have some good advice even though I know it good to refresh.
http://www.overcomingpain.com/10steps.html

More catching up...

Maybe separating it by body part will be easiest:

1)Neck was still a wreck so continued through beginning of January. I felt we weren’t getting anywhere and well, obviously my PT agreed, because she broke up with me. We both thought I needed to see another doctor. I was at my wits end and wasn’t sure which direction to go in seeing as though I’ve been to every kind of doctor I can think of. I got the name of a spine surgeon – Dr. Michael Neuwirth - from my hand dr. I made an appointment to see him after my hand surgery (see below). He said that he wanted to do the following: a 2 level anterior cervical discectomy and osteophytectomy with a 2 level anterior cervical fusion using structural allograft and an anterior cervical plate. I think I walked around in shock that day. Not only did this sound huge, the doctor didn’t take my insurance and at the time Beth Israel still wasn’t out of negotiations w/ UHC. After flipping out for a couple of days and emailing the dr with my million and one questions – I started to think more sensibly. I realised I needed more opinions. My friends that are chiros were already dead set against it. Can’t really blame them. I made an appointment with my physiatrist, and continued to research. What I found were reports that once your spine is fused, it puts more pressure on the adjacent joints and they begin to degenerate. That was the last thing I need because my spine is already degenerating faster than most people my age. I saw Dr. Panagos about a week later and told him what was going on – still the pain was horrific and I have no life other than work and the couch. He felt the surgery was pretty heavy duty as well and not necessarily the best idea. He’s seen patients have that type of surgery and not any relief. He was v. nice and you could tell he really cares about his patients, and empathises with the length of time I’ve had to deal with the medical and insurance companies spinning me around and around. Something really needs to be done to sort out the medical industry in this country. I should know! He gave me another exam and said there were a couple of injections into the muscles he was thinking about. I think his feeling was that the muscles might be causing more pain than the spine. Heck I’ll try anything that is not the surgery at this point. The first idea was Botox – yes I was shocked. Supposedly it can release the muscle and help with the nerves and calm the area down. I don’t know the technical aspects but that was the gist. It is v. expensive and he wasn’t sure we’d get approval from UHC. Miracle of miracles we did. It had to be ordered from a special pharmacy and sent overnight as it has to be kept refrigerated. I had the injection almost two weeks ago. Dr. P said it would take about two weeks to work, and he didn’t do too much as he didn’t want me to get too lax, and said we could “top it off” if need be. Well, so far I’m not seeing much improvement. Two weeks will be in two days, and I’m meant to ring him and let him know what is going on. The first weekend I was a little sore but felt ok. Then last week most of the week I was in a lot of pain from the injections. I had 8 into various muscles on my right side. I was a bit better this weekend – even cleaned my kitchen b/f the neck flipped out - and then once I got to work and sat all day at the computer I was a wreck again. I changed the setting on my chair to make sure I am sitting more upright to see if that helps as well. It’s not easy though, the chair keeps changing back itself! Anyway, the neck is not happy right now. Did go to the gym at lunch – been trying to give the legs a bit of exercise a couple of times a week since I can’t really do too much with the rest. So, still trying to be positive and hope it miraculously kicks in any minute. Fingers crossed.

2)Hand surgery #5! Wow – who ever thought I’d be saying that? This was minor COMPARED to all of my other hand surgeries. Thankfully!!! It was for Dequervain's tendonitis Dr. Melone did my surgery, like I would let anyone else touch my hands, and it went pretty well. I wasn’t very nervous – think I was in shock that I had to have another hand surgery – or medical procedure – again. I swear it is non-stop. Surgery was 21 January at Beth Israel Hospital. Of course they were in the middle of a dispute with UHC (they’ve finally resolved but I read somewhere it would only be retroactive to 1 March, which doesn’t help me – so not happy at all as I owe over $2000 to the hospital – at least the dr’s were covered though) and I just couldn’t put this off anymore. I’d been waiting for a long time and my patience had run out. Two years was just too long to be sleeping with a splint. I requested the first surgery as it is one of the most important things to do. Seriously, you can’t eat, you’ve not slept the night before, so it motivates you to get it over with as soon as possible. That and since I have been on e of those patients that made everyone else’s surgeries get delayed, I know better. So at the hospital at 6am! Of course they don’t tell you the doctors don’t show up until 8.30! Beth Israel has quite a system. They gather a group together in the waiting room, then bring you back to changing areas. They say you can see the person you came with after you change. Just so you know, they don’t . I had to beg to let my mother come up before my surgery as there was no way I was going in w/o seeing her and I knew she was freaking out as well since she thought that we could see each other later too. This is what we were told. Beware of liars…I get changed, then they take you one by one to ask a couple of questions. After that they take the group of you up in a lift to the floor above, and walk you to the pre-op/post-op room. After waiting for a while, timing depends on where you are seated, the nurses seem to start at the far end and work their way down, a nurse finally came to ask me a million questions and do blood pressure, pregnancy tests, etc. I asked her if my mother could come up and gave her a whole spiel about how I have had so many surgeries and my mother and I have a “thing” and I need to see her b/c I won’t go into the OR w/o seeing her. I was nice and she was like ok, then fobbed it off on another nurse. The other nurse was v. busy, thing she was the head nurse, and forgot, so I gently reminded her and then she did it right away and someone sent up my mother. She was so relieved, as was I. Of course it is also nice to have company when you still have another hour or so to wait for the doctor. The anesthesiologist came by and we went over everything, Dr. Patel was his name. He was v. nice and good sense of humour. Nothing worse than a doctor w/o a personality! So we’re waiting and waiting and then at about 8.20 my tummy felt wonky so just to play it safe I went to the loo. Of course this was when Dr. Melone comes in, so my mother told him where I was and he walks down and even though I’m still in the loo – being perfectly fine –have the craziest tummy – he’s outside calling my name. I came out and was like – hello – I had to use the toilet! But all in good fun, we get on v. well. He was saying he couldn’t believe it’s our no. 5 and how long we’ve been doing this – for 18 years! The intern/resident dr was all shocked like how can you be so casual w/ him? I think they’re all scared of his reputation but I’ve never been intimidated – heck it’s my body – I’m going to deal with the doctor as I please. Besides, he is a v. funny guy when you get to know him. Unfortunately he still supports Georgetown basketball – his greatest flaw. I went to SU so we argue about Bball.Dr. M signs off on my arm and I get wheeled into the OR. I was actually looking forward to this b/c my neck had been killing me and I had not slept in forever, so sedation sounded like a gift from G-d! They did a local on my hand and wrist, about 3 or 4 injections, and you are awake because they want to make sure the area is numbed up. Afterwards they knock you out – the best part! Afterwards they bring you back to the same room you started out it – and I was so tired but relaxed. My neck didn’t hurt for a whole hour, so I didn’t want to get out of the bed. I kept asking for more pain meds and not to be moved as I was afraid my neck would start to hurt again. I have to say everyone was most accommodating. They let my mother come up for a couple of minutes to see me then sent her away until I was able to move to the chair area where they have some snacks and drinks to eat. All in all nothing like the other hand ops – a lot less painful for sure. I had to wear a splint for about 11 days, then they took that off and the stitches out, gave me some exercises to do and sent me home. Wrist is still a bit sore and swollen, and they didn’t warn me that my thumb would be numb-ish for a while, but all in all it’s good.

3)I had to have another abscess drained the week of Christmas. Again, no idea what caused it. Then this week that area started hurting again. Seriously, I really would think I’m a hypochondriac if it was not proved that there is something wrong when I get to the dr’s office. I went to Dr. A on Friday and he said that – yes, get ready for it – I had another infection but it was a fistula this time. I don’t even know what to say or do anymore. This is ludicrous. There is no proof that I have Crohn’s – even the dr’s say that – but yet I keep getting these infections. He put me on both Flagyl and Cipro for a week (in the middle of the week at present) and going back on Thursday at 2pm. Yes, it is a miracle I’m not in a mental institution yet. Plus you can’t drink on Flagyl so tmrw will be the first St. Patrick’s day I’m sober since university. Well, I need to do my laundry anyway…

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!