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.

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.

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…

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!

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!

Day from hell

I just am SO wiped out still from yesterday and have this horrid headache now for four days and I'm sure it's all stress.

I spoke to Dr. P yesterday and he said after consulting with some colleagues they agreed that I should have a blood workup to make sure I don't have any underlying blood conditions. The reasoning for this is that because my vessels and tissues are so friable, they don't want me to form a haematoma whilst doing the spinal epidural, as then I would be paralyzed. I appreciate the caution, but it also delays everything. His assistant gave me a list of 3 haematologists but said that I needed to blood taken first so I could bring that with me and to go to my PCP as soon as possible. It didn't make sense to go to the PCP for blood when she had nothing to do with it, but the assistant sounded so sure I said ok. Being brain dead, I just do what I'm told. I rang up Dr. Rosen and her office said to come in. Which I did. And then I sat and waited for over an hour to see her. And whilst she's normally very understanding and accommodating, she was uncomfortable taking blood that she wasn't interpreting and not really knowing what was needed. Which I have to say I agree with. It didn't make sense to me and I did ask Dr. P's assistant over and over if she was sure that's what I should do. So I left and was quite disheartened. I picked up some food on the way back to the office as it was about half two at this point. When I got back I rang the first haematologist on the list from Dr. P. That dude was retired so the put me on to another dr. Of course my luck was that the person answering the phone was on her first day and knew nothing. She said she would have the other girl ring me back when she returned. In the meantime I rang Dr. P's office after finally inhaling my food, and filled them in. I then rang the next haematologist on the list, a Dr. Wu. Thankfully he was able to see me at 16.15!

Now you have to understand that throughout all of this I was under the impression I'd have some blood drawn, wait a couple of days and all would be groovy and I could go get the epidural. You have to imagine my surprise when Dr. Wu, after asking me a ton of questions about bleeding, explained the procedures. He first takes some blood and then sends it off for (I could have this backwards so excuse me) I believe the coagulation studies, which take a WEEK!!! THEN, after those results, he has to send me to a special lab at Beth Israel where they take more blood and do some sort of platelet study, which takes a couple of days. Whilst hearing all of this all my head is doing is calculating how soon I am actually going to be able to get this epidural. And it's not till after the 4th of July weekend by my calculations. All of this make me a very unhappy person.

So after I leave Dr. Wu's office, I ring Dr. P and get to speak to him. I was sort of flipping because no one had warned me about the length of time. He said he has to make sure about this and I do appreciate it because the worst cast scenario is that I bleed and get a haematoma on my spinal cord which would paralyse me. I don't really want that, but at the same time I am losing my mind from the pain. I'm at the point that I'm actually trying to convince myself it's all in my head and I'm imagining the pain. If only! So I ask Dr. P about Dr. Rosen's suggestion on trying neurontin, which he says is similar to Lyrica. I have been SO afraid of Lyrica because I've heard such horror stories. So he said sure he'll ring in a script for me. Groovy.

During the bus ride home though I was debating about it and when I got home I decided to go online and look up more info before I picked up the prescription. Very contradictory reports but some positive about nerve pain (the weight gain totally freaks me out) but in the end I decide to go ahead and try it. Ha, like anything is easy at this point. I get to the chemists and he tells me the doctor requested a specific number of pills, but the insurance co will only fill a lesser number. I said that is fine, as I am only going to try it for a week or two until I get an injection. He says ok, and puts it into the computer, which of course comes back saying that the doctor has to ring the insurance company for prior approval, and that can take 2-5 days. At this point I don't know how I didn't just fall on the ground and start wailing. I think I was too tired.
I rang my mother and ranted for a while, because everything that should just be simple isn't. I hate insurance companies and I really hope the President gets his public health care option, because we really do need to level the playing field here.

So that was my day from hell. I've emailed Dr. P today about the prescription problem, and I'm sure the pharmacist has rung him as well. So now it's a waiting game to see if I will get any relief or I will jump off a building waiting for some.

Venting for the day:
And if I hear one more person whinge about having a cold or the sniffles I just might kill them. Someone on FB yesterday went on and on about having a little cold and how he was sent home from work and was devastated. PERSPECTIVE PEOPLE. I know I'm not as bad as some people, but come on, a bloody cold!?!?!? Get over yourself!

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.

Continuing on that "never a dull moment" theme

(The return of the pinched nerve and cervical stenosis)

Last week my neck was starting to bother me again. Mildly, nothing major. I went to the acupuncturist on Thursday night and mentioned it, along w/ catching him up on all the other fun I've had. We were going to do the neck but the jaw and tmj and intestines and the fact that my circulation was off and I was grayish, distracted both of us and we forgot the neck thing. Friday my neck was less happy. By Saturday morning I could barely move my neck. The pain was horrible, stabbing sharp pain in my neck and right shoulder that travels down my arm and lower back. I tried stretching it to no avail. Then I tried the pool, just floating w/ a floatation belt to try to loosen up my spine. It was nice when I was in the water but unfortunately couldn't stay there all day. Then I even tried the sauna (I hate the sauna) to get some heat into the muscles to loosen them up. I was great until I started walking home again. Just my feet hitting the pavement sent stabbing pains throughout my body with my neck as the epicenter.

I spent all Sunday on the bed or the couch, resting my head and neck. I tried heat. That didn't work. I tried ice. No results there either. I tried more stretching. By Sunday at least I was able to move my neck down to the side. Pain definitely not gone though. In fact the pain is just as bad. I've been popping NSAIDS like they're candy - again no help. Never fails for a long weekend to be the time my body wants attention. It is quite spoiled and likes to throw tempertantrums at the worst times possible.

Yesterday I had to get out of the house for want of not going stir crazy. My parents came in and we went out for a bit. I was ok for part of it, but then too much walking and I was shot again. Rested and then went to dinner, where I barely made it sitting upright.

I tried to reach the acupuncturist today, hoping somehow he could see me, but when I did hear from him no appointments until Thursday night. I don't know if I'll make it till then. I caved and rang my chiropractor, whom I've not seen since November or December. Thankfully they were able to get me in tomorrow at noon. So now have to get through the next 19 hours. Wish me luck. I sure as hell am going to need it!

first PT session

I am pretty sore from last nights session, and my neck on the right is in pain. It's amazing that even though we didn't do too much, it really made muscles that forgot they were there react. Iced for ten minutes after as well. I've been given four exercises to do every day:

1)on back w/ towel roll at base of skull, tuck chin and hold for 3 seconds. 10 reps/2x day
2)sit w/ good posture, keep face forward, tip ear toward shoulder and hold for 20 seconds. 2 reps/2-3x day
3)stand w/ arms at side, pinch shoulder blades together and hold for 5 seconds. 10 reps/2x day
4)lie on belly w/ arms in diamond shape above head, thumbs to ceiling, lift one elbow up and slowly lower down, repeat on other side. 10 reps/ 2x day

I sure felt them even though it doesn't seem like much. Not happy about the pain today but I have to start somewhere. The PT person said it was a good thing to do the acupuncture and strengthening at the same time. I have to be careful though and just do minimal stretching and no heavy weights for strengthening. At present I am set to go twice a week until the end of February. We shall see how it goes.

Acupuncture

I decided to try out Dr. Mark Seem, and my first appointment is tonight. I've put together some information about my medical past and I'm sure he'll think I'm a complete nutter with all of my issues, but what can you do? I think it's a good idea for the doctor to have a clue about this stuff, how else can he treat me? My appointment is at 18.30 and I wish it was sooner. My back is a bit better but my neck is still in a lot of pain, though the chiro did say I was much better than last week. I know I'm not supposed to put all my eggs in on basket but I am praying that this work will help, at least a bit. I am being optimistically cautious I guess. Other than that this weather bites. I so wish I was somewhere warm and dry.

Pain in the neck...

Wednesday was good, I went to the pool after work, then my SIL came in with my nephews. We went to see the balloons being blown up. Thursday we went to the parade, thankfully we had nice weather and it wasn't v. cold out. The only other time I have been to the parade it was FREEZING - I kept buying hot chocolates not to drink, but to keep my hands warm! I was feeling the same as I had been feeling, nothing hugely different, until Friday night when my back and neck started to tighten up. By Saturday I was in lots of pain and it just kept getting worse. Sunday afternoon I actually took a muscle relaxer when I got back to the city. Since I am so sensitive to drugs, and also b/c this particular drug had given me hallucinations in the past, I only took one pill, though the label said to take two. It was a good thing too, because it wiped me out. At least I made up for the lack of sleep I had the previous nights. I was passed out within half an hour, and completely zonked out. It definitely helped, but I can't possibly take that and think I can function. My neck and back are still killing me and unfortunately the chiro wasn't in on Monday. I can't go today but am going tomorrow. I hope I make it. It feels like someone has put a vice around my spine and is tightening it. Lovely, I know.

I did speak to one of the acupuncturists yesterday. She seems to think she can help me, and also works with a lot of other techniques other than dry needling (aka trigger point acupuncture; aka acupuncture physical medicine (APM). The other guy I heard back from only just graduated and I'm thinking I need someone with more experience. Another person I had emailed me responded saying I should see Mark Seem, who started the Tri-State College of Acupuncture. I left a message on his vm so we will see if I hear back. Otherwise I will see about the first lady, Roberta Mittman. She does seem a little more pricey than what I've been seeing, but I may not have a choice. It's incredible the amount of money you have to spend to feel better, even with bloody health insurance. Drives me batty to just think about it! I just really, really, really need to sort out my neck and back right now, it's absolutely killing me.

coincidence?

I was going through some old medical files that I had accumulated from when I was trying to figure out what was wrong with my hip. It was a very interesting list - I wrote down some things that might fit:

?Myofascial pain syndrome (neuromuscular disease; affects fascia; trigger points)
treated with PT, massage therapy, trigger point injection
?RA (inflammation of joint and tissue around joints; auto immune disease
?polyenthosopathy
-pinched nerve in cervical spine? feels like pinching/pressure in neck and shoots down right side of body
-Ehlers Danlos Syndrome -unstable joints; dislocating shoulder

What I find most interesting about this list is that I a)had this pain in my neck and arm longer than I can remember, it just wasn't as constant, and b) I think I am more qualified than most doctors. No doctor had mentioned anything about Myofascial pain until quite recently, and that was only because it was a physio in Holland. I knew I didn't have RA as I've never tested positive for it, but I guess I wanted to cover all bases. I was diagnosed w/ EDS after this, by a genetic doctor. And now I have been diagnosed with herniated, bulging discs and stenosis. I really should be a doctor.

Yes, I'm going to rant. And then rant some more. My major problem with the medical system in this country, well, one of them, is that all doctors are trained in parts. There is no doctor that I have found - if you know of one please tell me - that treats a body as a WHOLE. You have to go to a million different types of doctors that specialise in very specific things, and whilst that is good on one level, it is bad when they forget that that part of the body they focus on is actually CONNECTED to the rest of your body!

Where is this all going you ask? Well I had my appointment on Monday with the neurologist, Dr. Fatimi. Please don't go to her, she is dafter than a plank of wood. Perhaps she is just too young and clueless but she really doesn't have any idea what she's doing. My mother came with me to this appointment as I was to have the EMG test. Once we finally got into her office, she said - I thought you were going to have the EMG already? I couldn't believe it. I explained to her how I had had a whole long conversation with her assistants and we rescheduled the visit and the test to that day, from the 3rd. She said yes, I saw you were scheduled and you didn't come. I had to explain that I received a call from her office whilst I was away, and as I didn't return until midnight on the 2nd, I could not ring her office until the morning of the 3rd, and then tell the office that the appointment had been cancelled and rescheduled, which they said oh yeah, we have you for the 17th, for some reason it was still on the 3rd as well. This has to be one of the most disorganised offices ever. It drives me barmy. She didn't apologise or anything. Finally she arranged for the test to be done then, after she kept us waiting in the test room for ever. She didn't really explain what was going to happen, thankfully I had done my research, and did the electrode part first. They write on you for the measurements and then stick electrodes on you and zap you with electricity. This is not fun. I was trying to stay calm. It was extremely painful. Then it got worse, she did the needles. It was like medieval torture but with electricity. At one point she stuck a needle in my hand, in a v. sensitive post-surgery area of my hand that is extremely sensitive, and I lost it. She didn't warn me when she was going to do it or where, and just randomly kept stabbing and zapping. I hope whomever is reading this never has to have this test, but I won't lie. It was horrific.
After she was done, she said - wow you're so sensitive. Gee, a normal person would be in pain, but factor in the fact that I have fibromyalgia and my brain processes pain differently, then of course I was sensitive! That's what I mean about her - completely daft.
We then reviewed my MRI where she didn't even mention half of what the report said, until I brought it up. She then said she thought PT would work and gave me a prescription for that. I had brought along copies of some articles I had read about myofascial pain and dry needling, and gave them to her and explained that I believe (as my chiro does) that I have myofascial trigger points and that they need to be worked out before any PT can be done, because you can't strengthen a muscle that has a trigger point in it. I swear this went in one ear and out the other, then she seemed bothered that I was talking, wrote down the name a physiatrist, and said that I would need to talk to that person about treatment as she doesn't know anything else. What kind of doctor is that? Definitely not the kind that is concerned about a patient. I understand that with the way insurance is set up it is not to benefit the dr or the patient and they all have their numbers to do so they can make money, but if you don't want to treat patients then you shouldn't be a doctor. Period, case closed, regardless of the money. I have been to too many doctors to put up with this kind of crap. I am so fortunate that my primary, Dr. Rosen, takes the time out to talk to me, answer my calls, look into things when I need her to if it's something I can't do myself. And yes, I'm spoiled, but that is what a doctor should be like.
Ok, well, enough about that, sorry, I am just so frustrated.
After the lovely EMG I was in a lot of pain, stabbing, stinging pain. We had some wine and I thought I would be fine by the morning. But I was wrong. I woke up and could barely move my hand and everything was hyper-reactive in my body. The test inflamed everything and set me off down another spiral of bad pain all over my right side. I couldn't even go to work. Yesterday I was still pretty bad, and then I went to the chiro at lunch. He couldn't believe how tight my neck/shoulder area was and said there was a lot of Myofascial stuff going on. So I'm going to see him again tomorrow.
I did make an appointment with a physiatrist, Andre Panagos, at NY Pres who does dry needling, but it's not until the 29th. I heard back from Norman Marcus' office and will see about possibly going there. He doesn't take insurance and the first visit is $465, which I guess is better than $1200. I still can't get over that one!
So, onwards and upwards. My head is spinning from all of this and throbbing as well.

Piece by piece

I am falling apart. I'm so tired of this all.
I had the MRI for my neck on the 11 October. I am not good in small spaces so the neurologist gave me some Valium. Thankfully one of my friends came with me because me on Valium is insanity itself. It helped a lot and I kept my eyes closed the whole time, which was about half an hour. After I went home and passed out for a few hours on my couch. I was so loopy!

By Friday I still had not heard from Dr. Fatimi, the neurologist. Since the MRI results were only to take a couple of days, I figured I better ring her. I first called, left a message and was told she would return my call shortly. Three and a half hours later, still no call. I rang back, got someone in her office that hadn't a clue about anything, and told me the doctor had already left. Finally they found someone who sort of knew something, but not really. First she told me that the doctor had asked her to call me - Um, well, why didn't you then? - and my MRI was normal. I was happy if not surprised at this, as the pain is just getting worse. I then asked what was the next step, as Dr. Fatimi had thought I would need an EMG test. She said to make an appointment, so the first that was available was for 3 November, the day after I return from Holland. I hang up the phone, and within a minute or two, my mobile rings. It was the woman from Dr. Fatimi's office calling to say that she is very sorry but she gave me the wrong results and the appointment is to discuss my results. "So my MRI was not normal?" I asked her, and she was like, nope. That's it, nothing. I was meant to sit around for two weeks wondering what is going on. Thankfully a friend of mine said that I could go to the radiology place and get a report, which I did on Saturday.

Here is what the report said:

MRI of the Cervical Spine without Contrast

Findings: Magnetic resonance imaging was performed with sagittal T1-weighted images, sagittal fast spin-echo T2 and proton density images and gradient echo and fast spin-echo T2 axial images on a 1.5 Tesla MR unit.

Mild disc bulging and spondylosis is present at C4-C5, C5-C6, C6-C7. At C4-C5, there is a small superimposed right-sided disc herniation resulting in mild compression of the spinal cord. Minimal flattening of the spinal cord is present at C5-C6. At C6-C7, there is a small to medium-sized superimposed central disc herniation with mild cord flattening.

No other significant bulging or herniated discs are identified. The size and signal of the spinal cord are normal. Uncovertebral and face joint hypertrophy results in neural foraminal stenosis which is mild bilateral at C3-C4, mild to moderate right and mild left at C4-C5, moderately severe right and mild to moderate left at C5/6 and mild right at C7-T1.

The craniovertebral junction is unremarkable. The osseous structures are intact. No masses are identified. Mild disc space narrowing is present at C4-C5 and C5-C6 and there is diffusely decreased disc signal on T2-weighted images due to disc degeneration.

Impression: Mild disc bulging and spondylosis from C4-C5 through C6-C8 with small to medium-sized superimposed central disc herniation at C6-C7 and small right-sided disc herniation at C4-C5, resulting in mild spinal cord compression. Mild to moderate multilevel foraminal stenosis as above.

Sounds lovely, doesn't it? I tried to look up some of those things on my phone but it was too much to try. I was able to speak to a friend that is a chiropractor and he helped explain all the craziness going on. The long and the short of it is there are three options: surgery, which does not sound lovely at all; PT, which would strengthen my neck but not help the compression; and chiro, there is a technique called Cox (have to go look it up) but the catch is it a)is management, not cure and b)very few dr's do it, and those that do know more about the lower back than using for the upper, and c)the place my friend knows in the city does not take ANY insurance, and it would be $150 PER VISIT!!! and I would need to go a few times a week. I really need to start playing the lottery!

With regards to this Dr. Fatimi - I am definitely not liking her at all. First of all, I didn't like the way she fobbed me off and told me it was carpal tunnel, even though I told her it wasn't that type of pain. I've just faxed over the report to Dr. Rosen and asked her to ring me when she has a chance to discuss what to do.

I also made an appointment for tomorrow morning with my old chiro as my whole right side of my back is in spasms and I need to get some relief before my long trip to Holland on Friday.

Never a dull moment.

In other news...My UTI results came back and Dr. Rosen said that the antibiotic I was taking was not one the lab listed for that type of infection, so I had to go back, take another test - which was not completely normal - then they sent it to the lab, and go on a different antibiotic. Of course we didn't get the results from the lab until AFTER I was done taking the new antibiotics, which, obviously, I did not need.

Where can I get a new body please???