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!

another day, same problem

The first couple of weeks after the last (2nd) injection worked for about 2 weeks. The last couple, especially the last week, I've been in agony. I feel like I'm back at square one. Started PT on Friday and went okay. Went again yesterday and woke up feeling like someone was crushing my spinal cord. Joy. I spoke to the dr's office yesterday after lots of back and forth it was decided that I would be squeezed in this Friday. I had told them anytime before I leave for Italy in October, and first they said they couldn't do it until October. I quickly told them that the dr had PROMISED that if I needed another one he'd squeeze me in before my trip. And to be fair Dr. Ahmed kept to his promise. G-d willing the third time is a charm. Fingers crossed, et al.
Btw, was so bad a week ago Tuesday I took a pain killer (Ultracet) at 10.30, with food. After I ate lunch I started to get nauseous around 14.30 and was still feeling ill at 20.30. It did NOTHING for the pain and all I felt was sick for 10 hours! If anything at least it proved to the annoying resident at the dr's that the drugs didn't work and they are NOT a solution to ending my pain. I wouldn't want to take them every day anyway.

3 month anniversary

How depressing. Today it is 3 months since this literal pain in the neck started. I also had my second epidural today. At the moment I'm in agony but thought I should move around a little before lying down again. Need to ice as that seems to help, it feels very sore. I have had two acupuncture appointments in the last few weeks. The first one seemed to help loosen up my trapezius muscles which was good, so we did another appt 12 days later, and I'm not sure if it was that or the combination of going to 2 Depeche concerts in a row and overdoing the whole week with the work move, etc. but the last two weeks have been v. painful. That and I'm incredibly depressed from gaining almost 5 lbs in four weeks! So NOT good. My muscles are atrophying and I lose my breath so easily, worse than normal.

During the procedure the dr says to tell him if/when you feel anything painful or uncomfortable. Last time I had pins and needles shoot all the way down my right arm when the needle was going in. This time it was so strange, it was my chest and back on the right side, it felt like an electrical shock. Freaked me out completely but thankfully as soon as he moved the needle it stopped. It's not a fun procedure but if it works I will be very happy about having to deal with it!

Anyway Dr. Ahmed said the procedure went well today and the medicine went where he wanted it to go. I know the first few days can be worse after the local wears off, but am hoping they are not too bad and that I will feel much better in a few days. Please, please, please. It's 7 weeks until Italy and I REALLY don't want to be feeling like this, as it will completely limit me as to what I want to do. So fingers, and everything else, is crossed.

Also had a quick scare this week with a possible abscess again. It started hurting a few weeks ago but went away, so I let it go, then this Monday/Tuesdsay I was in a lot of pain. The dr wasn't in until Thursday so I made an appt then, but strangely by Wednesday it felt better. The dr said it did feel a bit "weird" on that side but that he couldn't find anything "surgical" that he needed to do, so I yet again completely perplexed another dr. At least he's v. nice and said, even b/f the exam, that he always wants me to come in if I suspect something, even if it's nothing, b/c he'd rather deal with the beginning of a bad thing than me putting it off. HUGE relief it was nothing though.

Must go ice and lay down again, in mucho pain.

No changes

The good news is I had an MRI last Saturday and it showed nothing. No rotator cuff tear (I knew that but everyone kept jumping to that), no bursitis (surprising since everyone's told me I've had that for ages). All good, and I am definitely relieved b/c if it was a tear then I'd have to contemplate shoulder surgery and who has the time (or energy) for that? I've already decided to push back my hand surgery till the new year so I will have a full FSA account and days off.

But the question still remains, what the F*** is going on w/ my neck??? I see Dr. Ahmed (the anesthesiologist/pain dr) on the 6th. The other drs think he will want to do another epidural. Fun stuff! But if it works then it's fine because the pain has actually been really bad this week, especially in my shoulder and upper arm. I am praying that it will work this time because tomorrow is 10 weeks and I'm seriously going to lose my mind, or what's left of it!

9 weeks and still (sadly) counting

Well I just don't know what to do anymore. I'm at a complete loss. Did the epidural injection work? It might have helped a little with the inflammation in the nerve in my spine, but I still have pain in my shoulder and down my arm, as well as pins and needles. My trapezius muscles are v. v. tight. I asked Dr. P what to do and he said I could try at home traction (don't have one), muscle relaxers, or dry needling. So I tried the muscle relaxers. Of course the next day when he got back to me he said which ones to try, and the one I used was left over from my hip surgery. All it did was give me restless leg syndrome and I was up all night from it, dry as a bone, eyes hurting from being so dry and dehydrated. Must remember to toss out any remaining pills. It was something w/ at T. Anyway then I rang my acupuncturist. He said that he could try some treatment that wouldn't increase the inflammation. I went last night, and felt a little better after, even though the needles hurt like hell - surprising because they don't really normally hurt. But today my neck /spine hurts and the shoulder hurts and the pins and needles are still the same. I'm am going to lose what is left of my mind. Mark did notice last night that my right side seemed weaker - I told him I'm not surprised b/c I've been guarding it and using my left side - which explained why when he touched my left trapezius muscle I screamed - it's been working overtime. Thank goodness it is Friday and I don't have to sit for two days at a computer. I am getting very worried though because time is running out to sort this before October and Italy. There is no way I'll survive that trip like this. Something must be done! Two weeks until I see the anesthesiologist again, perhaps I should see if I can get an appointment sooner. He might have to do another epidural. I also definitely need an MRI of my shoulder, so wondering if I should have that arranged because perhaps this is coming from there as well and a shot in there would be good? I don't mean the one Dr. P. did a month ago, I mean like they did with my hip where they really get into the joint. I have to ask someone and hopefully get some information because I am so worn out I could just give up at this point - and I'm sadly not even trying to be dramatic.

Beyond frustration

The injection so far hasn't seemed to do much of anything to my body. Last night I thought perhaps I had less pain in my neck, but that is probably because my shoulder was killing me it was taking all the attention away. This morning I have pain in my neck and also stabbing pain in my shoulder. I never heard back again from Dr. P about what to do w/ exercising at home so I've not done anything as when I was in PT they told me to not do anything if I was in pain. I am so confused. Granted I've heard it could take another week or so for the injection to kick in but yes, I'm slightly impatient. (At this point I have a right to be, it's been 8 weeks of this crap!) The pain in my neck does seem a bit higher today though and not in the joint where they injected it. I'm losing my mind. Part of me thinks I should call Dr. Kelly up and have him check out my shoulder, perhaps it is surgical after all, but then again, there's nothing I could do until after October because of my trip. I go back to see Dr. Ahmed on the 6th August, perhaps he'll have some ideas then. My head is spinning, as was the rest of my insides this morning when I had a massive blood pressure drop from out of nowhere. I hate when that happens. Feeling a bit better now but just want to rest, not be sitting in the office uncomfortably.
Ok, I am done with the whinging for now. I just want my life back!

Post - injection

Thankfully it all was worked out. Friday am I received another call from Dr. Wu's office saying I needed another blood test. I rang back and explained the procedure was set up for Tuesday and that unless the results would be back by Monday I wasn't going to have it. The assistant said to ring the dr at his Queens office. What a backwards place that is! I tried ringing and either got a busy or fax sound. I rang the assistant back to make sure it was the wrong number and told him and he said that you have to let the fax go on and when someone is there and the realise it's not a fax they will answer. Quite frustrating. So I finally gave up with that concept and sent a fax in big black marker asking the dr to ring me ASAP - which was about an hour or so later. He said there was one more test, but I probably was ok b/c of previous results, but to be sure I needed this one. I said all the other dr's said the test results were fine and he said most likely but he couldn't definitively say. By this time I had received a call from Dr. Ahmed's office saying someone cancelled for Monday am and I could have that slot. I asked Dr. Wu when the results would be back and he said Tuesday so I said no thanks, I'm just going to go have the test done. Truly there is only so much you can put up with. Just like I'm not going to have an X-ray taken to see if my neck is lax when we know it is already. No wonder the health system is such crap in this country. They overdo tests when you don't need them and the people that do don't get them! Anyway, I digress.

So Monday I went to the hospital at 10 for an 11 am appointment. They put an IV in me for fluids and electrolytes, but no meds. I thought I would be out but when the doctor came down to talk to me he said they wanted me awake so I could tell them if they were in the right spot. This didn't sound like an enjoyable concept but I guess there is a better chance of it working if you can get the medicine as close as possible to the correct spot. I went up about half an hour or so later and the worst part was laying down on the table. They had a couple of pillows that went under my chest and this big foam cut out with a mirror under it to put my head on. This and laying on my back flat are the most painful for me currently. I told him so he said to try to get in a comfortable position, but I told him there was no way like this so lets just get it over with. He was concerned I wouldn't make it but afterwards said I was a trooper as he couldn't believe how I didn't move. I was too afraid to move, and also figured it would go faster so I tried to zone out.

First they put a local in my neck. That burned a lot but I've had worse so whatever. After that they put in the contrast, and then poke around, whilst continually taking x-rays, to see where they are near the nerve and spine. At times I had the strongest stabbing pain down to my right third finger and I told him. The procedure is quite interactive! That happened about twice I think. I also think it mean it was near where he wanted to get so it was good. The pain would go away pretty much as soon as he moved the catheter away from the spot. It was freaky having someone mess around with your nerves and feeling how they control different parts.

After he found the spot he had to push the medicine in. They go very slowly with this,especially, as the dr explained after, that the nerve area was quite narrow. The extra pressure can cause more pain whilst injecting it. Thankfully it didn't really with me and next thing I knew we were done and he was cleaning up the iodine. They sat me up carefully and I was feeling okay, a little light headed but not too much. The dr then showed me the images of my spine and the injection and explained what he did and what I might experience. He told me to rest the rest of the day and put ice on my neck if it hurt, and I could take pain killers if I wanted, but I usually avoid those like the plague. Some nice wine is much more preferable to me. Then I was wheeled back down into the nurses are where my parents were waiting for me. All in all not the first choice of things to do with free time but it's nothing compared to what I've been through. The hip surgery still remains the all time tops of nightmares, and the brutal ER visit last year the second.

I iced and just vegged on the couch for the rest of the day yesterday and came to work today. Taking it easy. Have some mid back pain on the right side but think that's more from being a couch potato the last 7.5 weeks as it's been getting worse for about a week. At this moment I'm icing my neck as it was hurting after going out for lunch. Should have had a liquid one! Ha!
So that's that and we will see if it (G-d willingly) kicks in and works in the next few days. So far I still have pins and needles depending on how I'm standing/sitting and stabbing in my neck depending on how I move, but as he said, it can take a few days. Fingers crossed!