Slightly overdue

but it's been a v. busy few weeks.

I left off on my way to see Mark Seem. He was v. nice and patient and took the time to get my history, as well as review all the reports I brought with me. He has a lot of insight into hypermobility and told me some very interesting things about it. One being that the Dutch have a v. high rate because there was a lot of relationships with the Asians when they were a "superpower", and whilst the Asians hypermobility does not affect them in a negative way because they are shorter, when the genes were mixed with the taller Dutch, then it became a problem because size and proportions were all different. Perhaps I'm Dutch??? He also feels that my fibromyalgia is relatively mild and that the polyenthsopathy plays a much larger role. I was impressed he knew what enthosopathy was as most doctors ask me what it means. Poly=many and Enthesitis is an inflammation of the entheses, the location where a bone has an insertion to a tendon or a ligament. It is also called enthesopathy, or any pathologic condition involving the entheses. The entheses are any point of attachment of skeletal muscles to bone, where recurring stress or inflammatory autoimmune disease can cause inflammation or occasionally fibrosis and calcification. (Also see: http://medical-dictionary.thefreedictionary.com/enthesitis ) He suggested because of the hypermobility and fibromyalgia we would work relatively slowly and not leave the needles in for more that 10-15 minutes. The idea was to not trigger my fibro. He used a combination of TCM needles as well as slightly longer needles for the dry needling/trigger point release. Afterwards I was v. tired and thankfully just went home and to bed. I felt a bit worse the first few days but then the pain in the neck and shoulder/upper back area became more localized, which I was told was a good thing.

Unfortunately he had to cancel the next weeks appointment as he was ill, and then last week scheduling didn't work because it was a short week. I went this morning for my second appointment. This time I definitely felt more when the needles were going in. It's hard to describe, originally I wouldn't have used the word painful, more like pressure and a pulling on the muscle - you can kind of feel the muscle "grip" the needle. This time he really got into some trigger points directly which is good, but it definitely felt more intense. He also put some needles in my hand and one in my right index finger. I accidentally moved the finger and that woke me up! It was in a v. sensitive place and even hurt when he took it out. After we finished with my back, he released two trigger points in my TMJ as it's been killing me lately. It still feels like there is a needle in there about an hour later, though not as intense. I was told to not chew or talk a lot. If it brings relief it will be worth it.

Yesterday I went to see a physiatrist as I am meant to get PT to strengthen my neck, but didn't trust anything that daft neurologist said. I went to see Dr. Panagos as Weill/Cornell. He and his resident were very nice and knowledgeable about my various conditions. They told me a horror story about a woman with EDS that can barely function after giving birth, and suggested that I don't do that. Lovely. Although we knew that already, especially as EDS is a 50/50 chance for the kid. I would hate to give this crap to someone else. The doctor said he's sorry there isn't much he can do but the goal is to get me to learn how to help myself, so I don't have to constantly go to PT and such. He wrote out a very thorough and specific prescription for neck PT, saying that I need strengthening but no stretching. I have to say it's so nice to meet doctors that know what is going on, not daft ones like Fatimi who dismiss everything you say and think they know more, when, in reality, they do not have any experience whatsoever. Even Dr. Panagos' resident knew a lot, she said she was surprised I wasn't a doctor. I think I should be given an honorary doctor's degree after all I've been through! Unfortunately our insurance is changing in the New Year, so I will wait to start PT then, so it's less of a hassle.

I think that's about it for now. Happy New Years!

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.

Spaghetti joints

That's what I have. After I went to the chiro today, I was walking down the street to get lunch. As I took a step off the pavement into the street, my left ankle completely gave out, and the next thing I knew I was on my left knee facing the street. Thankfully no cars were coming, and a very nice woman gave me her hand to help me up. Roughed up my pants a bit a little knee damage, but more scared than anything. I was able to walk it off with my ankle. I have had weak ankles for as long as I can remember. Whenever I run my ankles give out and I go crashing to the floor. One time when I was about 15 I was running down the hallway at home and my ankle gave out, and my other leg was mid-air and since I couldn't put the other foot down, my foot crashed into the wall, hitting a beam of course, and smash went my little toe. I was on crutches for a few days. It's always fun being me! My ankle hasn't given out that blatantly in a while, so I was definitely caught off guard.

Other than that, my chiro/massage was nice, and I'm going back on Friday because my neck and back are still so tight. I heard back from Mark Seed ( http://www.tsca.edu/site/about/faculty/ ), the acupuncture college guy, and I have an appointment on Thursday, 11 December at 6.30pm. I didn't speak to him directly but he said on my VM that it is an hour for first visit, and $135. Subsequent appointments are $120. He is located on WEA and 79th Street so it should not be too difficult to get there unless traffic is v. bad, as there is a bus that goes along 57th Street.

I am still not sure which person to go to, him or the other lady I had spoken to yesterday. I think I will try him first and see how he is. He does sound like he knows what he's talking about since he runs an acupuncture college and has written text books and articles. I will keep you posted.

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.

Ouch!

I haven't taken the anti-inflammatory in a couple of weeks b/c my acid reflux has been so bad, and now my hip, the right one, the post-op one, is not happy with me at all. I went to the pool yesterday, but it was hurting before that. I guess I need to start taking them again, but then what am I going to do about my stomach? The pain is getting bad there and I'm thinking I probably have some damage, so I've been taking the Protonix 2x/day. Why is everything always a catch 22? Frustration!!!

At least I have received a happy surprise. My sister in law is bringing in my nephews tonight and we will hopefully get to see the balloons being blown up and then go to the parade tomorrow. Any time with them is the best!

Oh, and I heard back from two of the people I emailed yesterday so will contact them on Monday after the holiday for further information and decide who I want to see. That is definitely good news! They said they both do the dry needling! YAY!

Knackered

I just can't seem to feel good since I've been back from Holland. It's now been 3 weeks.
I saw the chiro again on Friday, and that was good. I still am so tight around my neck, shoulders and upper back though. The pins and needles have been v. minimal, but this morning I woke up and it happened very strongly for a few minutes. Thankfully it stopped again. I went to the pool on Saturday and it was lovely, nice and quiet and I had a WHOLE lane to myself. Heaven! I was going to go again on Sunday but I got quiet ill on Saturday night and was up most of v. early Sunday being sick. I finally got a little sleep, but not nearly as much as I needed, and I was wiped out. Thought I would crash hard on Sunday night but no such luck, just tossed and turned and couldn't sleep for the life of me. And so the viscous cycle of no sleep = pain = no sleep, etc, etc, etc... begins.
Yesterday I thought I would go to the pool but between the exhaustion and back spasms I passed. I did take a long hot bath to help with the back. I also had a little wine and a clonazapam which usually does the trick, but I still didn't sleep all that well, back and forth from one side to the other. It's all v. frustrating. I am praying I can get a good nights rest tonight so I won't be a total wreck for the long weekend. I have a lot of things I am hoping to do.
In the interim of waiting for my appointment at the end of December, I have been reading a bunch of new articles on treatments for FMS and CMP, not sure what I think I'll find, but perhaps I will be lucky and find some sort of magic solution for me. Ok, I know, but a girls got to dream.
I am on the phone waiting to see if I could get in sooner to see him, but no luck. :-(
Happy turkey day!

PS - reading anything and everything may pay off - I found a website for the Tri-State College of Acupuncture (never knew it existed) and from there found what I believe is the same thing as dry needling - APM - Acupuncture Physical Medicine. From that I did a search in NYC and have come across some people who might be doing exactly what I want, or so it sounds from their websites. You have to love the web, well, they probably won't since I've bombarded them all with emails. We shall see if I reap any rewards with this. Fingers crossed!!!

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.

Calling for help

I've been busy researching dry needling in NYC and writing letters to any organisation that might have a clue as to what direction to point me, since none of my doctors are familiar with it. I just sent this email to the International Myopain Society:

"Hi. I was recently in Holland visiting a friend and she took me to her physio as I was in a lot of pain. Recently I had an MRI that showed disc bulging, herniated discs and stenosis in my cervical spine. I was sent to a neurologist who sent me for the MRI because I had constant pins and needles shooting down my right arm.
I also have EDS - hypermobility, fibromyalgia, TMJ, mild scoliosis and more things I probably can't remember at this moment. I have also had 4 reconstructive hand surgeries, and hip surgery to deal with a torn labrum, psoas release and FAI.
Anyway, I went to see this brilliant physio, Remco, in Den Haag and he did some traction on my neck, adjusted C2 for the TMJ and also adjusted my lower back and did dry needling in my trapezius muscle. It was the first time since the constant pins and needles started that I had relief. I didn't have them for 4 days, and it is still much less than it was.
The thing is, I really need to find someone who can work on me here. I have a chiro, but he's not allowed to do much else other than electric stim and massage and stretching. That helps, but only mildly. I was hoping that you would be able to recommend someone in Manhattan that works with my kind of mess of a body and does dry needling.
If you would I'd so appreciate it.
Thank you very much for your time."

Yes I am desperate! I am hoping someone will respond from one of my cries for help and tell me they know someone in the area. I did find this Dutch-trained physio who would be perfect, but of course he A) is in Bethesda, MD and B) doesn't take insurance. Part of me wants to go down to see him anyway, and he lives close to my aunt and uncle, so...I may just have to. I think I will send him an email as well. His name is Jan Dommerholt and he sounds brilliant.

I go for the EMG test on Monday, my mother is coming with me. Yes, I'm a baby, but I don't fancy someone sticking needles into me and then electrocuting me. We shall see what the darling neurologist has to say about my reports then as well. I have no faith in her at this point, but will bring my research and show her, after she says her opinion.

At present, the neck and back hurt, plus the usual "it's high humidity and low pressure" fibro crap, so going to go to the PT pool after work and hopefully it will be quiet and empty and I can just relax in there for a while.

post Holland

The flight to Holland was pretty uncomfortable. I used my neck pillow to keep my head up so I wouldn't lean it in any funky position if I fell asleep. It was quite a bumpy flight over there as well. Thank goodness I had the wheelchair pick me up when we landed. There was no way after that long flight I would have been able to walk to miles to the bus transfer for the other terminal. I'm not exaggerating, if you've never been to Heathrow - it is HUGE and it can take you ages to get from one part to another, and that's just in one terminal. They have 5 now, so there's a whole system of transferring and buses and walking down endless corridors.
Terminal 5 is the newest though and quite nice actually.

When I arrived at AMS thankfully my friend picked me up - saved me a lot of pain. The next few days I was a bit of a pretzel and T suggested I see her physio. Thankfully he was able to squeeze me in, and I went on Tuesday afternoon. His name is Remco and I am madly in love with him. He made me feel better than any other person has since I can remember. No miraculous healing or cure, but after what he did, I didn't have pins and needles down my arm for 4 days, and now it's only just starting to get constant again. After having a lengthy discussion with me about my various bodily messes and asking me lots of v. good questions, he examined me. He made some v. interesting insights, like EDS and the neck disc issues are closely related, my C2 is super tight because it's over-compensating for my TMJ on my right side (said that looseness in tmj on right side affects tightness around c2/c3), which is beyond loose and constantly clicky. He asked if my neck cracks when I wake up in the morning, which was funny because it's usually the first thing I have to do before I can get moving. He also said to stay away from surgery and do pt/chiro and keep swimming.

This is what he did:
*adjusted c2/c3
*used manual traction on neck
*adjusted middle back
*three dry acupuncture treatments in right shoulder muscle -said needles would take 2-3 days to really have an affect

He didn't want to do too much work as everything was so irritated already. He also said he wished I lived over there - and I said of course, you want me for your guinea pig - to which he laughed and admitted it. He said that my case was so interesting and I wish the doctors over here looked at it like that. He seemed to really want to help, not fob me off on someone else, which seems mostly the case over here, with a few exceptions.

Since I've been back I spoke to Dr. Rosen and she thinks I should look into the dry needling, although she cautioned nothing is a cure-all, which I know, but heck - I'll take any relief I can get, especially if it's not drug related. I also spoke to my rheumatologist, Dr. Meng and whilst she does basic acupuncture, she's not familiar with dry needling, but also agreed that it was something interesting to look into.

I am going to my chiro shortly and will tell him what the physio said and see what he thinks as well. I did come across a name of a doctor at NY Presbyterian that does dry needling in one of the articles I printed out, so may ring him later and see what his office says.

I definitely am back to bad pain in my neck now and the pins and needles are not 24/7 yet but they are getting back to that level. My TMJ is a mess, and I get my night guard next weekend. I really hope that helps.

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???

M.I.A.

Yes I've been MIA for quite some time now. From mid-August till the beginning of September I was in my own world. I just didn't have the energy to deal with everything going on. I will give a quick recap for the past few weeks:

18-24 August: went to pool 3x that week, and cut my hair off. I needed a change in so many ways, and that one was the easiest! Then again, I didn't really have much of a say. Avi, my hairdresser, decided I was long overdue, and well, there is no arguing with him. That weekend I was out pre-celebrating my birthday, which I overdid - way too much. You don't realise how that sangria hits you until it's too too late. Had an appointment with Dr. A, to check my wound - he said it was ok but the day before it didn't look so ok.

25-31 August: was good again and did pool 3x. Continued to celebrate within reason for the most part, until the weekend. Oops. I did do some samba dancing though which I thought was quite impressive for my hip. The hip let me enjoy myself for a bit and then decided it was time to sit back down. But still, no long term suffering which was a v. good thing.

1-7 September: pool 2x that week. Yet another appointment with Dr. A to check the wound that would not heal. He says it was doing okay, even though I was in more pain than I had been in for a few weeks (not counting the cauterization).

8-14 September: Big accomplishment - I biked from my flat to BB&B, which is a little over 2 miles. I was very proud of the hip, it held up quite nicely, even with a few inclines that were on First Ave. Pool again 3x.

15-21 September: Pool only 2x this week. I had to go to the dentist to have a crown made for my last root canal, the one that went horribly wrong. Yes, it was almost a year ago, but after all that agony I was quite happy to not have anyone muck up my mouth again. It was agony and then I had to stay for a cleaning as well. Thankfully I took half a pain pill beforehand so that helped a little bit. My TMJ was a mess for the week after, and still is a bit now come to think of it.

22-28 September: very bad - didn't go to the pool all week. To be fair, Thursday night I had a pretty bad onset of my FMS and by the weekend was almost completely bed/couch bound. Between my exhaustion and stress and the weather I felt absolutely dreadful. I did somehow manage to pull it together enough to make challah on Sunday though. Not quite sure how I pulled that off, but I was determined.

29-30 September - 5 October: pool 2x this week. It was difficult with all the running around back and forth to the island for the holidays, and then again on the weekend for the dentist. I had my crown fitted and also decided to get a night guard as my teeth seem to be catching the brunt of my nighttime grinding. Hopefully this one will be better than the one I had ages ago and it will do some good. It sure costs enough! But to add to the excitement of the holiday, during shul on Tuesday I started to feel icky. I thought my tummy had gone off so went to the loo, but it wasn't that. To spare you the details, the short of it is I had a surprise UTI. I can't remember the last time I had one, so was pretty flipped out when I started to see blood. Thankfully my sister in law knew what to do and sorted me out until I was able to see the doctor the next day. Yes I had a bad UTI and had to go on a major dose of antibiotics. Oh joy!

As for this week so far, it's been pretty icky. Yesterday I had a visit with a neurologist, Dr. Fatimi. When I had my physical a few weeks back, my doctor recommended me to one so we could check out all this tingling/pins and needles down my right arm/hand and the twitching in my left finger. She decided I needed an MRI for my neck and an EMG test. For those not familiar, please see the video below. I'm still not convinced after watching it that it isn't more painful than they are portraying, but that's because I do not trust anyone in the medical profession anymore after all of the pain they've inflicted on me. But hey, that's just me.



EMG NCS test

Currently the doctor thinks I might have carpal tunnel. I've thought I've had that for a while, but the pain I've been having daily for the last few months feels different than that, so we shall see. (As a side note, my right hand by the thumb area has been killing me the last couple of weeks. The injection that Dr. Melone gave me definitely wore off. I know he said that I would need surgery if the injection didn't last, and not sure if I should do that now or wait. I am going to see what the EMG study shows first about carpal tunnel and then make an appointment to see him. He said it would be an easy surgery compared to what I've had in the past, but I need more detailed information on that.) The doctor was pretty young and I am not sure I am that keen about her, but I will give it a little time. Then again, whenever I meet a doctor they usually think I'm barmy because of the multitude of issues I have. It's hard to find a good doctor that has a clue. Anyway, she said that if I do have carpal tunnel she would give me a splint to wear at night. I said I've already got that. She also mentioned Lyrica and when I told her I'd only heard bad things from people who have taken it, she said she had seen good results. Since I don't really trust doctors and I definitely don't trust pharmaceutical companies, and I do believe real people stories, I am not going to go that route. It's bad enough I'm taking Mobic now - though I really need to remember to take it every day, I think it's a subconscious thing that I forget it. I told her I would prefer non-medicated ways to treat whatever the issue is, and she did say PT could be something as well as massage therapy. Now that is something I can get on board with!

Of course when I returned to the office there were messages from my regular doctor. The results of the pee test came back and the lab claims that the bacteria in me would not be destroyed by the antibiotics I am on. So, since neither my doctor nor I wanted to try more drugs just for the sake of it, I have to go back on Friday for another pee test to see if the bacteria have been killed or if I really do need to start another course of antibiotics.

I'm starting to wonder how I have not ended up in a loony bin at this point.

I think that is all, but my memory has been crap. Yesterday the neurologist asked me if I had a doctor treating my FMS and I was like - on no, didn't like the last one and haven't got a new one. Daft git I am - of course I have a new one, the one that put me on Mobic. It was pretty embarrassing to have to tell her that I forgot.

Oh - never heard again from Dr. Kelly's office about rescheduling, and I'm in no rush to go back there. Still v. mad that they did not help me one bit in fighting the insurance about cancelling my PT. Also had an appointment w/ Dr. A scheduled for last Friday, but his office cancelled it, and I have not been bothered about ringing them back to reschedule either. I am so bored with all of this medical rubbish!

Saturday morning

I woke up and my bum was burning. So I looked. Seemed after the torture of the cauterization the day before - it hadn't even worked!
Just my luck.
I'm not even going to bother to ring the doctor since I'm seeing him on Friday. There is no way I'm letting him cauterize anything again as it was so painful and no success.
I'm pretty much hitting bottom right now.

Just when you thought it was safe...

to get your hopes up, they get smashed. In many ways lately but the one I'm talking about now is my bum wound. At the last appointment with my surgeon, he said the fistulotomy was healing wonderfully. I was happy, it was all good. This morning something didn't feel right, it hurt and I looked. Good thing I did as it sort of looked like a purplish blood blister type of thing. I rang the doctor and he said to come in. I figured I was going to see him next week so I'd just go today instead. Long story short, he doesn't know quite what it is. He did cauterize it though. Turns out the middle part of the wound is healed, and on one end it's taking longer, which we knew. But the other end has opened up. He said it doesn't look infected, which is definitely good, but depending on how it looks next weed (I have to go back on Friday) he may put me on antibiotics.

I realise I sound very defeatist at the moment, but why can't anything in my life just be simple and easy? I'm at my wits end.

An accident waiting to happen -

That's what I am. It's incredible how accident prone I am. Sunday I was out w/ my little nephew, and to make a long story short, he was playing on a "child size" house at a farm, slipped across one of those slat type bridge things, hurt his elbow and was crying. So I ran up the "steps" - more like a plank with notches in it - to pick him up and as I did - WHACK! There went half my head into the v. low "child size" ceiling/roof. People kept asking if I was okay because it was so hard and loud. So now I'm slightly concussed. I took off from work yesterday because it hurt to just go a few feet from the bed to the loo. Still sore when I move, so trying to take it relatively easy, but still - at work you are on the computer. I'm not meant to do too much reading or watch too much telly, but I'm sort of stuck here at the office. I'm frustrated as well as I can't do any real physical activity until this swelling goes down. Nope, didn't go to a doctor. The last time I had a concussion - which was definitely worse than this one - I went to the doctors, they examined me, had me do a CT scan, and nothing showed up. I'm so over seeing doctors this year that I am just sorting myself out. There's really nothing they can do anyway. Hopefully it doesn't take as long as last time to wear off, I believe it was about 6 weeks or so.

As for the hips, they've not been happy. I thought I packed my Mobic from the office to go to the island on Friday, but it wasn't in my bag. I figured I must have left it here in the office by accident, but it's no where to be found. I hope it wasn't nicked. The hips are definitely missing the drugs and the pool. I have more Mobic at home but I can't really do much about the pool, so praying for a v. quick recovery.

weekly update

Last Saturday was lovely, I had a nice long lie in and then did nothing all day except make pancakes! I hadn't had a day like that in ages and it was just what I needed. Sunday I went to the pool and then my parents came in for a bit. The brought in this neck massage thingy I had gotten a few years ago and I've been using it to try to loosen up the knots in my neck. It seems to help a bit, though I'm still tight and also getting the pins and needles down the arm.

I went to Dr. Meng, the rheumatologist on Monday for my three month check-up. She feels I should increase the Mobic and take more Tylenol. I told her that the Mobic is irritating my stomach even with the acid-reflux meds, but she still seems to think I should do it even for a little bit. I'm very weary though. I rang up the insurance company as well to ask what I could do about getting to see the chiro again. They gave me the run around saying that I should have the chiro call to speak to their clinical one and explain the whole situation. I asked his office to do that and haven't heard back so don't know if they did. I will try again on Monday and see where to go from there.

Tuesday I went to the pool and had a good workout. Wednesday night I destroyed my body. I went to see Aimee Mann, who was fab, but it was standing room only and by the end of the night I thought my body was going to break apart into pieces, especially my hips and back. That and very little sleep left me a bit funky yesterday, so I did not go to the pool. I just had no energy so went home and relaxed - just what I needed. My left hip is still pretty miserable right now but at least the right one (touch wood) seems to be okay. And thankfully I've remembered to make the Mobic this week.

Tonight I am going to the island for the weekend. Staying at my brothers tonight and tomorrow my SIL and I will take my favourite boys to the beach, so long as the weather is good. Fingers crossed, it's not looking good at the moment.

August looks pretty laid back which is good. I will start in earnest my gym visits again next week. I just finished the required 50 for the 6 months to get reimbursed from the insurance company, and get to start the next six months on Sunday. I am going to get every cent from them especially since they won't pay for my PT or chiro now.

Happily I found out I have 13 days left to take before the end of the year. 2 are automatically put aside for Rosh Hashanah and Yom Kippur, and so it's really 11. I am looking forward to going to Holland in October or November to stay with my good friend who is having a baby this month. (I am voting for the 26th even though it's a week after her due date! :-) ) After that 6 days left to figure out what to do with. Yay!

Of course I just said the right hip was being good and it's just started a lovely stabbing pain! Argh!

Still haven't heard from Dr. Kelly's office after they left that message to cancel my last appointment. Since I'm so sick of doctors I'm waiting to see how long it takes them to realise they've not seen me for a follow-up in ages. I am definitely doctored out! I so wish I had a somewhat "normal" body! I'm so over this humpty dumpty thing.

some good, some bad

I tried to take it easy this week to recuperate from the previous few weeks. Tuesday I went to the pool, and was so tired. It's amazing how missing 5 days in a row made me feel out of shape. Then again, it could be because I was so exhausted. I tried to go yesterday but whomever is running this place decided it wasn't such a good idea, as there was one obstacle after another. (The ladies changing rooms were closed, then no showers, etc). So instead I met my friend that just moved across the street on 34th and we hung out on the roof having cheese and wine. Not a bad way to enjoy the lovely weather last night. Wish every summer night was that lovely. No humidity and a nice breeze - perfect!

Wednesday I went to the chiro where they tried to sort out this tingling down my arm. My doctor even cracked my bad, which he rarely, if ever, does. That's what a mess it was. After the bad news was dropped on me - my daft insurance company has decided to NOT let me go to the chiro anymore - just like they did with my PT for my hip. We had a long talk and it seems United Health that owns Oxford now just lost a HUGE lawsuit and so they will be denying everyone and everything.

See: A Guide To Insurance Company Denials and Medical Loss Ratios

Pretty ironic when Ann Fleishauer, the Director of External Communications lets the OptumHealth website make this statement:
"About OptumHealth: As one of the nation's largest consumer health services companies,
OptumHealth makes health care easier and better for employers, health plans, public sector entities and the 61 million people with access to its services. The Company's goal is to optimize health, well-being and financial security, while lowering benefit costs and helping consumers
make informed decisions about their health through standalone or integrated services. OptumHealth is a company of UnitedHealth Group (NYSE:UNH). More information about OptumHealth can be found at www.OptumHealth.com"

(OptumHealth, which is the in-house division that deals with UnitedHealth and Oxfords coverage for PT, chiropractic, etc.)

The last thing OptumHealth (previously ACN)/ UnitedHealth seems to be doing these days is making health care easier and better. All they are doing is taking away services so that the higher ups and investors are making a lot more dosh. It's all for profit, which, when comes to health care, is NEVER a good thing.

These links explains about the lawsuit:
UnitedHealth sued for racketeering
Hospitals Sue Groups For Health Racketeering
UNH: 4,000 job cuts, $895 lawsuit payout

It's no secret that health care in this country is a mess and it needs to be changed so that everyone is covered. I don't profess to have the answers, but am paying attention to all that is going on. One thing that sounds a bit iffy to me, since it has profit orientated insurance companies involved, is the Health Care for America Now (HCAN) campaign.

Some interesting articles about all of this:
AHIP CEO busted by outraged American - with damning audio
AHIP Murder By Spreadsheet Deceive America Tour
Sure, the insurance industry wants to hear from you. Sure.
Fights Over Health Claims Spaw a New Arms Race - Insurers and Doctors Try for Upper Hand; Firms Help Both Sides
The Truth About "Healthcare for America Now"

Ok, sorry to go on about that but when you're in my situation you get worried about these nasty tactics the insurance companies do.

Other than that, Wednesday night was brilliant, saw George Michael at the Garden and he was amazing! I was dancing and afraid that would be a bad thing in the long run but thankfully my hip has not gotten too bad from it, even though it was hurting before the concert. When George is singing you just can't help to dance!

Yesterday I saw Dr. Aranoff for another post-op check up. He was very excited and surprised about how well I've been healing and in just 5 weeks! He said this procedure is always more risky with women in that area because of the thin muscle. Thankfully that seems to be okay and now I just have to see him once every month until it's completely healed. That was very good news!

Wiped out

It's been 44 weeks since my hip surgery. I thought I was doing pretty well but the last two weeks made me feel otherwise. I have been running around more in the last two weeks than I had done since having my hip surgery, and with all that running around, my right hip has not been a happy camper. It may also be a combination of that and the fact that I've been leaning more on my right side when sitting because of the fistulotomy. Either way, the hip is not happy. Because I was going to be running around so much this weekend and it had already been hurting me, I used lidocaine patches on Saturday and Sunday. I would not have made it through without. Last night when I was able to just relax my hip was so tight. Actually they both were and my legs were very achy as well. I even iced my left hip to try to calm that side down. There were also a lot of stairs involved over the weekend, much more than what is "normal" for me.

To add to this loveliness, my right hand/wrist is acting up again and really hurting. I had stopped using the splint but really have to start again as I am not even going to contemplate another surgery right now. My neck is so messed up that I'm having tingling down my right arm and hand. Thankfully I have the chiropractor on Wednesday, though I wish it was today. On Thursday I have a check up with Dr. A for the bum. I finally had the courage to look at it a couple of weeks ago as it was really hurting and I wanted to make sure it didn't look infected or anything. All I can say is it was pretty disgusting, and big. The doctor definitely did lie when he said how big and deep it would be. I checked it again yesterday and it seems like the upper part of the incision has started to or closed up a bit, which I'd like to think is a good sign. It's hard to tell though and I don't really like looking so it's good the doctor can check this week. I've been going to the pool about twice a week and it feels fine so that is a very good thing. It still hurts to sit, especially on hard chairs, and I can't wait for that to stop, along with having to take sitz baths every day. I will definitely not miss that!

BTW - Natalie Douglas was completely brilliant with her "Cafe Society" show! If you ever get a chance to see her you should.

I should slow down before I'm forced to...

but I have so much to do! Not that I'm complaining, I like being busy, but it's definitely taking it's toll on my body at present.

Monday I made it to the pool. It was definitely worth it. I felt much better exercising in the water. Afterwards I came home thinking I would rest, but then kept coming up with things to do around my flat. Yesterday I went to the Philharmonic in CP. It was a lot of fun as usual, but unfortunately the speaker on our side was not functioning properly so we missed out on the music. Still, a good night - other than all the schlepping I had to do though. My neck and back hate me right now. I am so glad I have a chiro appointment tomorrow at lunch. Tonight I will go to the pool and after really do just have to rest. The rest of the week will be very busy: tomorrow night seeing the amazing Natalie Douglas in concert at Birdland! I'm really looking forward to that. Friday my (big) nephew is coming in for the weekend so there will be a lot of running around with him. After that things seem to settle down a bit, I have a concert on the 23rd and then one on the 30th, but that's it. I'm looking forward to doing nothing for a little while!

My bum and right hip are not happy at the moment, I think it was still sore from Sunday and yesterday carrying things all over the city didn't help. Not wanting to go back to just using lidocaine patches regularly so going to see how I do without for now. May have to throw one on over the weekend though.

Will I ever learn?

Not to overdue it, that is. Other than the bum bothering me, my fibro has been (touch wood) pretty good lately. And that's when I make the mistake and think my body is just like a normal , healthy one. I did overdue it last week, I had plans every night of the week. I was planning on going to the pool on Friday but when I left work I just felt like I had no energy at all and went straight home. My friend came over that night, which was good, but I definitely needed to just stay on my couch. I thought that would do it, but Saturday - when I was hoping to have a nice lie-in - the drilling on the street began about half eight. There went my brilliant idea. I thought I'd go to the pool but just couldn't get off the couch, until I went back to bed. I tried to take a nap around noon but that didn't work out either. Eventually I met my friend and we went up to City Island. Before I left I (thankfully) remembered to put a lidocaine patch on my right hip, as it's been cranky lately. It was a good thing I did because it was not happy all day. Everyone always said how cool that place was, but I think it's pretty run down and nothing to do there, except eat. And where we ate it wasn't v. good. Perhaps we missed the happening places, but it's pretty small so I find that hard to believe. It was okay though as the weather was nice so we walked around a bit. Then we had the genius idea to go to the MET roof to listen to the Bon Jovi concert. We made it there by eight, and were able to stay up there till about 8.40 - so it was good to hear, and at the same time not deal w/ the masses of humanity down there. After we just had a leisurely cheese and wine dinner at Uva. I love that place!

I probably would have been okay if I had just rested yesterday, but I was off to a close friends house for her kids birthday party. Again I threw on a patch as the hip was still hurting. I'm happy to help but we did so much stuff and I was already feeling wiped out, so think I over did it in a bit way. Plus this weather today is not helping. One day I'll learn not to try to do everything. Then again, maybe not. The party was good though and it was great to see my friend and her kids - it had been a while.

I really need to get to the pool, it's been a week now, and I feel like the hip is hurting because I haven't been doing much exercise. That and the sitting on my right side all the time probably doesn't help. I went to the chiro on Friday and he said when he was done that I definitely needed to come in this week as I'm all knotted up. I've definitely turned myself into a pretzel lately trying to sit comfortably. Wish I had an appointment today, but it's not till Thursday. Right now I have a lido patch on my neck/right shoulder area to try to numb the pain. I hope it works because I am just miserable. Brought my suit but will see later if I think swimming will help or just going home and passing out will be better for me.

As for my recovery from the latest, it's healing, but this morning I woke up to find it had been bleeding again. The doctor said that might happen, so I'm not going to worry about it. Plus I was lifting small children yesterday and probably am still not allowed to be doing that just yet.

Long week

I can't believe it's only Wednesday morning! I've been so busy lately I can't keep my head on straight. I didn't sleep on Sunday night, and Monday I was out. My hips are definitely reacting so I probably should slow down a bit, or at least wear flats for a while. But that's not going to happen anytime soon. Last night I had the theatre, and I walked over to 9th and 52 from my office which is on Mad and 52nd. Then I walked up to the Rose Theatre. Probably more than I should have done in heels, but it was the easiest way. Tonight I am seeing an old college friend who is in town for just a couple of days, Thursday there's a work do, Saturday I have plans and Sunday I have a party on LI. Next week so far there's the NY Phil in CP on Tuesday (praying for good weather) and Thursday going to see Natalie Douglas at Birdland! (If you don't know her, you should - She has an incredible voice and is extremely talented!)

So, last night I saw "The Bacchae" at Lincoln Center. Alan Cumming played Dionysius and was beyond amazing! He was absolutely perfect for the role. Everything about the play was brilliant, from the Bacchae (amazing singers and dancers all dressed in red floor length non-matching gowns) to the stage set. Even Alan Cumming's gold kilt just worked perfectly! The show was a mixture of acting, singing, dancing, art, and special effects (which usually are ludicrous on stage but these were perfectly matched with what was going on). I truly can't go on about it enough. Kudos to Lincoln Center for bringing this over for their festival from Scotland. This is was modern theatre should be about - even using a tragedy written by the ancient Greek playwright Euipides. It premiered posthumously at the Dionysia in 403BC, so it's a bit old. Even with my hips hurting during the 1 hour and 50 minutes if sitting I was too distracted to not think about them!

And the best news of all - last night I arrived home to discover my scanner had finally been delivered! Of course I had to take it out and hook it up, but I was too tired to start playing with it and if I did I am sure I'd never have gone to sleep. Now I just have to find the time to learn how to use it! :-)

42 week update

The hip has been a little unhappy lately from all the pressure I've been putting on it from sitting funny. However, it's no where as bad as I might expect it to be. The last few days were more achy than it has been, but I started taking the Mobic again today so hopefully it will help. (Yes, I'm daft and left all of my drugs in the city whilst I went to the island for the long weekend). The bum has been improving, thank G-d! Did a lot of running around this weekend. Thursday night we went to a party at Tavern on the Green, and then on Friday to my brothers for a block party and Saturday the wineries out on the North Fork. Busy but fun. Got to do some driving which I haven't done for a while and that was v. nice. I still don't miss owning a car though - petrol is so expensive!

I went swimming after work on Thursday and it went well. I did walking and leg exercises for about half an hour. At that point the bum did start burning a bit, but at least it was at the end of my workout. The pool was manic - there was this git wearing a wet suit (in a basement, indoor pool - how ridiculous) trying to become the fourth in my lane. I'm happy to share with up to two more people, as you have to it gets crowded, but the lanes are not big enough for four, so we had to toss him back out. He showed up yesterday again in the wet suit but thankfully I was getting ready to leave so didn't have to deal. It was nice and empty when I arrived yesterday, but by the time I left quite crowded. I guess more people had returned to the city by then. I even did a few laps but then the hip disagreed so I stuck to the normal routine.

I'm excited about seeing "The Bacchae" tomorrow night. The reviews have been good and I really enjoy watching Alan Cumming. After last weeks debacle with Sam Shepard's play, I need something good to wash that bad taste out of my mouth. At least it was only 70 minutes long! My bum wasn't too bad and tomorrows play isn't too long either so that is good. There are so many plays that I want to see this coming season I don't know what I'm going to do! It's not a bad problem though.

Post-op

I had my post-op for the fistulotomy today and thankfully the doctor said it looks well and is healing well. What a relief! He said he was sorry he couldn't do anything for the pain, but it's such a sensitive area that that is what happens. Great news is that he said I could go swimming. He said it might burn at first, but heck, it's already doing that, so why not? Just wanted to add a fabulous tip I picked up from some reading on the internet. After you do your sitz bath or shower, use the hair dryer on cold and low to make sure that area is dry. I started doing this the second or third say after surgery and it made the wound actually feel good by stopping the stabbing, burning pain - if only when the dryer was on, plus kept the wound dry. As we well know a moist wound doesn't heal very quickly. Wish I could remember where I got this tip so I could thank the person!)

Very excited to go see "Kicking a Dead Horse" tonight. It's the new Sam Shepard at the Public Theatre with Stephen Rea. Thankfully it's only 70 minutes long so I am hoping my bum can handle that. Going to dinner at Five Points first. Can't remember if I've been there or not, so it shall be a surprise!

My hip is still achy, but now that I can get back to doing some PT I am hoping that will help. And I am finally remembering to take the Mobic again.

not as bad...

as last time. Thankfully! This is what they looked like on Friday night,

and then on Saturday. They got a bit gooey but thankfully nothing like the last batch. I really hope that is it! I am tired of the itching! Thankfully they are practically all gone today.

Even though I went out yesterday to watch the football match, and knew I was going to be indoors, I put bug repellant on my legs, just in case. I'm going to have to stock up on that stuff now. Hopefully I can find something that works that is not full of all the poisonous chemicals though. I will do a search today.

Getting back to hip related items...
My right hip has not been to happy lately. I think it's from a combination of leaning on my right side so much because of surgery (yes, my bum is still killing me when I sit on it), and last week I forgot to take my Mobic. Well, didn't really forget, but was afraid to take it too soon after surgery as I didn't know if it would make me bleed more. I started it again yesterday, so we will see how that goes. Dr. Aronoff's office rang this morning to cancel my post-op on Thursday. The woman first said she would give me an appointment the week after, and when I expressed my concern about waiting and really wanting to see him this week, she got all snipish. I know it's Monday morning, but come on. Finally she conceded and got me in for Wednesday. It was strange, they're usually very nice there.

I haven't really slept the last two nights so hoping I can sleep tonight! Well, at least it's a short week this week!

I must be really sweet...

because the bugs seem to love me. I woke up this morning to 9 new bites! This is what my left leg looks like so far. I am really hoping that they don't get bad like the ones a few weeks ago. I can't deal with that again. It's strange because this doesn't usually happen more than once a spring/summer. I guess I am not allowed to sit outside ever again. :-(


Other than that, my bum is killing me, and I'm just trying to get through the day with a currently grouchy boss. TGIF!!! I need a rest!

mixed

It's been a mixed day - I booked some great theatre and concert tickets, which I am v. excited about. I'm such a theatre addict, most of my money goes that way. The other is diverted to books, books and more books. I suppose we all have our obsessions. I'm reading a great book about Elizabeth Wydeville now, that sets a lot of the propaganda against her straight. Almost finished so have to decided what will be next. Also hoping that the weather is good for the concert in the park on the 15th. I hated having to miss it this past Tuesday, so fingers crossed the weather is just as nice!!! (Please, please, please!)

The downside is my bum is killing me. All this sitting! My one boss is out of town and the other took a v. long lunch, so I went into one of the offices and just laid on my stomach reading for an half hour or so. It felt so good to take a break. Besides dealing with a cranky person here at the moment, the other thing getting to me is when people can't just say what they mean and be direct? Is it truly necessary to play games? That has to be one of my top pet peeves. If you are done, say so! Argh!

Now that I've vented, I'm much better.

Off in half an hour. Going home to soak and then out for drinks with my friend :-)

Missing the everyday

I made it to work today! Even though I was an hour and a half late, I still made it, and that is what counts. I don't think I could have taken another day sitting at my flat, no matter how much pain I'm in. I've cut out the pain tablets as I'm so done with feeling wonky and dizzy and sick to my stomach. I'm just on Tylenol now. It helps, but I still feel pretty weak. I took the bus and subway this morning. I had to wait for a bit, and there was a taxi in front of the stop, and for one second I thought I'd take it, but then I came to my senses and realised what a nightmare that would be, with all the bumps and potholes! I had left a pillow at work from the last surgery and glad I did. My bum definitely needs it. My bosses have been v. understanding, I'm v. lucky with that.

So, here I sit, at the office, still feeling like crap but really wanting to get back to my regular life. (But I do miss all of my mother's yummy home cooking!). I hate boredom and being cooped up, so time to make some plans! Well, not bike riding or anything, but something to get me out and about.

(Again, just want to say how amazing my family and friends are. Even when they are busy packing and then about to hop on a plane to S.A. find time to check in, or so busy with their three kids and birthday parties, ring me to say hi, and those that just have v. busy single lives and still find time to check in regularly. I hope you all know how much I appreciate you! It does mean the world to me, and I just want to say thank you!)

Good news are my bug bites are all gone and no more itching!!! (I probably just jinxed myself).
Bad news is that we've been through about 3 or 4 fishes in the last week. Martin died over a week ago, I got a replacement, and in two days he was gone, so brought him back to the shop, and they gave me a new one. That happened two more times over the last 5 days. I went in yesterday to tell them the latest had that cotton-like fuzz on it and they then mentioned something about air conditioning, and if it had been on. Seems that Bettas are v. sensitive to water temp and even if they're not near the a/c, it can cool the water, then bacteria or fungus grows, and then they're a goner. Wish someone had said something sooner. It does make sense though because Martin had been doing fine until the air was turned on. I think I will wait until the fall to get a new one! I can't take anymore dead fish!

boredom and general icky-ness

Yesterday was quite a day. I had brecky with my parents, then passed out on the couch for an hour or so. I had taken a pain pill when I ate and I guess it hit me pretty hard. It's definitely true that these things build up in your system, because the more I took, the quicker the effect was. When I woke up I took a shower and my mother wanted me to try to walk outside. We went pretty close, just to the food store, but I felt really queasy and dizzy and was wiped out by they time we returned. I ate again because we thought that might help, and then I fell asleep for a few hours. In the interim they had left. I was woken up around 19.30 by the phone and thought that I should eat something. I tried to look at some menus online but still felt ill, so just had a little cantaloupe that was cut up. I tried to sit in the other room for a while but just felt horrid so came back to bed and eventually fell asleep, on and off, for the night. I am glad that I didn't go to work today because I would have been a wreck.

This morning I still felt horrible, even though it had been about 24 hours since I had taken a pain pill! I decided last night that no matter how much pain I was in I was just going to take Tylenol because I hated the haze I was in. After I took a shower this morning and still felt ill, I thought some fresh air might help, so went across the street to Starbucks, where they have outdoor seats (I brought my own cushion - and it was still pretty painful). I was out there for an hour or so and it seemed to help a little. Then it started raining - just my luck. So I came home, ordered some lunch, and made myself eat. Since then just been vegging on the couch, trying to sit on my bum, and feel less sick. I think some of the meds are finally leaving my body. I truly hate feeling like this, like I've no control over my body.

I have to say this is a pretty horrible recovery and I wouldn't wish it on my worst enemy. I can't begin to describe the pain. I have decided I am going to go to work tomorrow and am hoping to make it through the day, with just Tylenol - at least that's the goal. I am beyond bored. It's dull just sitting around with no company, so at least there I will (hopefully) have things to do. I am really bummed (no pun intended) that I will be missing the concert in the park tonight - it's perfect weather! Oh well. C'est la vie.

Pain, drugs, boredom and lack of sleep

Make me pretty loopy. I have been going between Demerol and Ultracet, and there doesn't seem to be much difference between the two.

Thankfully the surgery went well, and the procedure was the "easiest" version that the doctor had outlined. It was pretty quick, only about half an hour. I woke up screaming my head off though. The pain was completely unbearable. The last thing I remember was laying down on the table and the anesthesiologist putting drugs in my IV, and then I woke up in agony. Agony is an understatement. The amount of pain I had was completely indescribable. This was the third worst amount of pain I've had. (It's crazy that I have a running list: the first was waking up from hip surgery in September; the second was when they were doing the surgery on the abscess - both times since the damn resident buggered it up the first time - and didn't put me under). When I woke up and was hysterical they asked if I wanted my mother to come in, and she did. She's amazing, I don't know how she stayed so calm and level-headed when I was losing it completely. Thankfully after what seemed like much begging and pleading and pleading and begging they gave me a shot of Demerol. After a few minutes that finally kicked in, and though the pain was still bad at least my mind didn't seem to care much anymore.

They let me stay there for about half an hour and then pretty much kicked me out, telling me I'd be more comfortable at home. I just wanted more shots of Demerol but they wouldn't give me that. The doctor did give me a script for some Demerol tabs though. I don't remember much about Friday, but what I do was a nightmare. When I first got home I passed out on my bed from the sheer exhaustion of being in that much pain + the pain killers. When I woke up I had to go to the bathroom, and was pretty nervous. I was able to pee but I also saw all this blood on the gauze and it freaked me out as it was bright red. This was the first time I actually realised how they literally taped up my behind with gauze. I was nervous about the blood so my mother said I should call the doctors office. They were not very helpful and just kept repeating that I only needed to call if the pain was very bad (I wonder what they consider v. bad since I was in agony???), if I was bleeding more than normal (again - how was I meant to know what "normal" was for this) and if I couldn't pee. I also asked, as my stomach seemed to be getting a little upset, what I should do if I felt I had to have a bm. The guy said to just take off the gauze and tape and go. Ok, so long as he said it was fine.

My mother wanted me to eat something because I hadn't all day, so I went in to the kitchen to see if I could and all of a sudden my bum decided it was incontinent and let loose. This was pretty gross as I still had that taped gauze all over. What a mess, to say the least. I was pretty upset, not just about the mess, but since incontinence is something that can happen with this surgery. I was so glad my father was out when this happened. I thought all was well, washed up and did a sitz bath and got changed. All for naught it seemed as it happened again. I couldn't believe it. It was probably a good thing I was high on painkillers as otherwise I'd have been freaking out completely. Finally my insides decided to give it a rest and I was able to get sorted out and back in bed. Such fun stuff I tell you! After that I don't remember much. My mother made dinner and I had to go to the table to eat. This required lots of pillows under me. I don't know how I made it through, but went straight back to bed afterwards. Unfortunately I didn't sleep very well and was up all night from the pain. (the last two paragraphs were written later but I wanted to add them so that anyone who goes through this might know what to expect)

Yesterday was a little better than today. I finally slept a little last night but this morning was in agony, probably because I hadn't taken a pain tablet since last night. I'm still pretty out of it from the drugs now, so this might not even make sense.

People don't realise that even if you're loopy and in pain you can be bored out of your mind! Thankfully my mother had been a great sport playing monopoly and scrabble with me to keep my mind occupied. There is only so much bad telly you can watch. I would also like to that my friends for their support before and after, it means so much to me to have that. It seems a little thing perhaps, but when you're going in for surgery it's nice to get that and afterwards it is great to have people call. I guess if you've never been through this stuff you don't realise the importance of what a little phone call can do.

Hopefully I will be going back to work on Tuesday, but I will see how I am tomorrow. Sitting is still incredibly difficult at the moment - I'm not sitting now, just kneeling on the floor.

Ok, room is starting to spin again so going to go lay down.

Dread

Well, the bites have plateaued. Not much better but at least not worse. Thankfully they're not too itchy though. I'm so glad it was cool this week because I've had to wear trousers to cover them up. Other than that I'm pretty stressed about tomorrows surgery. I think it is worse when you know how much pain you're going to be in. I am just praying it all goes well and is the simplest procedure of all (touch wood, poo poo, fingers crossed, etc.) I've been in so much pain the last couple of days that I don't even have the desire to put it off any longer.

My parents are coming in tonight so they can come tomorrow. I don't know what I'd do with my mother, she's just such a trooper when it comes to taking care of me after all of these lovely medical things. So now just have to get through sitting today (ouch!) and thankfully I have the chiro and massage at lunch.

May go to the pool after work but it depends on how I'm feeling. My tummy has been pretty wonky all week, I think from the stress. The hip has been holding up okay. I walked all the way home from work on Tuesday and it was pretty good. I can't believe it's taken this long to get there though - 9 months. And I still haven't heard back from my second appeal for PT from the state. I really hope I do get some visits approved so I can see how the hip is doing and what I can do to move forward though.

Walking Hazard Zone

Well, I have to say I am a walking hazard zone. Sunday afternoon my left leg was itching and I saw I had a bug bite. It seemed normal so I just ignored it. A few hours later when my parents arrived, I had numerous bites and some were starting to really swell up. I can only think I got them at the park (a concrete one mind you) before I went (indoor) swimming on Saturday, or perhaps Saturday night as the doors were open at the bar I was at, though nighttime doesn't seem like a big time for mosquitoes to be out. Anyway, I ended up not sleeping at all on Sunday because my legs were so itchy I was debating ripping the skin off of them. By Monday, the bites had gotten pretty big and were swelling up my ankles and feet. I rang the doctor, who was not in, so there went that idea. The nice pharmacist across the street told me to use Benadryl at night and a cream that has an antihistamine in it during the day. I found that helped more than the cortisone I had been spraying. Witch hazel also seemed to help a bit.

This is what the biggest bite looked like on Monday (my inside right leg):



Monday night I took two Benadryl and went to bed by 9pm. I woke up once around 2am, but thankfully fell back to sleep pretty quickly. Tuesday morning I woke up to this lovely picture (same bite as in last pic):


It's lovely, I know. I've been wearing trousers all week because I have a few that look this red, though thankfully they're not all this big. I am documenting this because for the last few summers I get bites out of nowhere, they get all icky and gooey, and seem to get infected immediately. This all started after my trip to Egypt in 2005. I was eaten alive there by bugs and ever since, about once a spring/summer, I get bites like this, and then (touch wood) it doesn't happen again until the next year. The first time it happened I woke up with huge bumps all over my legs, and had such a big bite by my ankle that I couldn't even bend my ankle properly and had trouble walking. I went to the emergency room that time, and the doctors were all stumped. They thought it might have been spider bites, and even drew circles around the infected bites. If the bites got bigger I was to go back to the ER. I didn't want to so ended up going to my regular doctor. She also was shocked. No one seems to know why this happens. My own personal theory - and granted there is no factual basis for it - is that the Egyptian bugs poisoned me and now I am really allergic to the American bugs. It doesn't make sense but it's the only thing I can think of, as I can't recall this ever happening beforehand, and especially not on an annual basis.

Here is what it looks like today (same spot), thankfully they seem to be improving. My motto is definitely "never a dull (medical) moment!" :-/

More swimming

I went to the pool yesterday and did about 15 laps of just swimming. I was trying to walk in between but my current injury was hurting when I did that, so I just did the laps. After the last two my right hip started to act up so I decided to not push it and just stopped. But I am v. happy to report that I was not suffering for it, so far that is. Hopefully it will keep up.

Swimming

I skipped the pool on Wednesday as I felt I would definitely be putting myself at risk to overdue it all. I did go for a pretty long walk after work though, so at least got some exercise in.
Yesterday I went to the heated pool on 34th, and I had it all to myself! It was so nice. After I did my regular walking and exercises, I decided to try some swimming. My mother was funny when I told her this - she said "Did they say you could?". My response was "WHO?". Since the insurance co has not let me have PT and I have not seen Dr. Kelly for a few months, I decided to take matters into my own hands. For better or worse. I was good, only did a few test laps with all the different strokes, and (touch wood) all seemed to go well. No popping or clicking or dislocating or subluxating that I could notice. And I can still walk today!!! My shoulders are not happy but they've been bothering me since I started doing arm exercises in the pool anyway. If I am still feeling like this tomorrow perhaps I will try a little more, though I still want to be cautious. It would be nice to be re-evaluated so I know what I should and shouldn't be doing though.
Perhaps the insurance gods will grace me with a positive answer to continue in the near future! Dare I hope???

3 days in a row

And I'm debating about going to the pool again tonight, but I have a feeling if I do that might be pushing me over the edge. I am sore today, so perhaps I do need a break? I'll have to see how I feel later.

Pool time

I went to the pool again yesterday. I am trying to make up for the last four weeks of not going, and then the few weeks I probably won't want to go after surgery. I am going to go again tonight. Thankfully my hips have been feeling pretty good with it. The right was acting up a bit when I was doing the sideways walking towards the end of my workout, but other than that (touch wood) it all seems good.

My right hand is not happy though, even with sleeping with the splint, but granted, it's only been a couple of days since I started that again.

Weekend and 38 wk post-op update

I suppose it would help if I remembered to take those bloody Mobic pills! Last night I was lying in bed, wondering why my hips hurt so much. Yes I over did it this weekend, but they were really achy. Then I realised I hadn't taken a pill all weekend, possibly even including Friday. Oops. What's that saying, G-d helps those that help themselves? I have been pretty good except for the last few days, and yes I just took one now after my brecky.

My lovely wound had been behaving for a couple of days and then yesterday I woke up and it was bleeding a lot. I won't gross you out, but it was a gross day dealing with it. Even so I took my lazy bum to the pool. I figured I would do a test run to see if I would be able to do this after surgery, since the doctor said it should be okay. It felt great to exercise and be back in the pool - it's been 4 weeks and I definitely need to keep up my muscles in my legs. I don't want any backsliding with my hip "progress". I did a little over half an hour, then got kicked out because there was some kiddie party.

My right hand/wrist has been a wreck lately, but did sleep with the splint last night so hopefully it will make some sort of difference for the better. I really can't possibly think about hand surgery right now with everything else going on! 11 days till surgery. Ugh.

update

I'm loving Dr. A. He said that all looks ok and I didn't need to have anything done. He also said he was glad I called him b/c I should always do that so he can check it out. Much better attitude than most dr's. He said he'd be happy to do the colonoscopy if the other dr's wanted it but I said I wasn't really in any state and he felt it wasn't a necessity so I am putting it off for now. Only time will tell if that is the right decision, but I do feel like it is. He doesn't think that anything would show up as well to change the course of treatment.

As for my right hip, I love those lido patches! They fix me right up. Of course the left got jealous and wanted one so started to act up but I've done a fair job of ignoring it today and tonight.

Dr. A also answered my q's about anesthesia (not general - woo hoo!) and wound size (not as big as I had started to imagine) so I felt much better after our convo today.

So all in all I haven't felt this happy in a few months! I know I still have to have the surgery but Dr. A seems very competent and positive about it so I'm going with that! (touch wood)

I could get into how bad my right hand/wrist has been but why ruin a good post? :-)

consultations

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

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

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

Answer

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

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

?'s

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

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

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

37 weeks post-op

Has it really been that long? Mind-boggling, truly.

Yesterday I walked all the way home. I was definitely feeling it on the way but kept it up. I'm a bit sore today but not as bad as I thought I would be, v. happy about that.

I haven't had a chance to go to the pool yet, but am thinking that I will do that tomorrow. I really want to get in some exercise before I have to have the next surgery on the 20th. I know the doctor said I can go in the water afterwards but I'm not sure how I will feel so would like to get some pool time in now, just in case.

I had to change my appointment with Dr. Kelly that was on the 27th June back to the 18 July. It was the first appointment he had available in a time I could manage. I didn't think going to his office a week after I have the surgery would be good, since he likes bending my legs and hips all over the place. Trying to put off as much pain inducing actions as possible :-)

My bum is still not happy but I'm trying to get through the next 2+ weeks as the doctor had said it would be better to wait a bit. Hopefully (touch wood) I will be able to manage it.

Did get a letter regarding the insurance appeal, and it's in the works. Fingers crossed that I can at least go back to PT for a bit to see what my real strength is and what I should and shouldn't be doing. I know bike riding is not in the near future, but that's not because of my hip!

It's like a never-ending bad joke

And I'm not even talking about all of my joint issues!

Today, after a night of no sleep from a sore throat, I was sitting at work and realised my bum was hurting. It felt like it did before I had the abscess diagnosed/drained. This totally freaked me out. I investigated and lets just say I found something that was wrong. I immediately rang the doctor at NY Pres that did my wound check, but they first said they couldn't see me till the 5th, and then said someone would get back to me. I was not v. trusting after my first experience there so decided to ring my regular doctor who is just a few blocks away from my office. The best thing about having the same doctor for a million years is you know the staff and they take care of you. Her amazing assistant A. got me in withing an hour! That was impressive! So, she looked and said yep, something is definitely wrong and that I needed to see another specialist. I told her about the NY Pres doctor and that (I had found out after a call from one of the nurses there) she was going away. Dr. Rosen said there was someone in her building she referred to and rang down to see if he could see me. Amazingly, he could, and did so v. promptly. I was v. impressed with him and his staff. He's v. direct and to the point and laid it all out for me, which is what I need. Between crying I got the gist of it all, and it is not pretty, in any conceivable way! Basically I need to have surgery again, but he wants to wait at least two weeks so the area can calm down and heal a a bit, and he's put me on antibiotics for the interim. There are many case scenarios and I don't want /can't even begin to think about right now. I'm just praying very hard. He said the wound will be bigger than last time and takes about two to three months to heal. Well, I guess the upside is he said it would be okay for me to go swimming whilst it was healing. Silver lining somewhere I guess!

Recap & 36 Week Post-op

So the test run in Tampa went fairly well. My right hip was pretty amazing, especially since I have not been in the pool for two weeks! Unfortunately my left hip has really been hurting the last couple of days. I do not even want to consider what we may need to do at this point. I mentally can not handle the idea of another surgery, at least not presently.

So, we did a lot of walking around mixed with driving every day. I think the most walking I did though was on Thursday. I am definitely happy that the right hip did so well. I was also shooting with my Hasselblad so was bending over and kneeling more than I have in a long time. I was a bit sore but nothing too bad. It helped that I iced it after the long walk on Thursday.

My wrists were a different story. My left was hurting from using the H and my right, well, it just doesn't like me anymore and constantly likes to hurt me. Another surgery I'm not ready to contemplate, so we will pretend it's all fine. Jeepers, I feel like Humpty Dumpty!

There was a message on my VM at work from Friday from someone at the Clinical Appeals Department at Oxford. I rang her back but she wasn't there. Can't wait to hear what she says. I guess they received my letter from last week!

It's good to be home though. Florida is nice, but for a visit. I could never live there. I am definitely a city girl!

PS-I've added some photos from the trip on my Flickr site :-)

Achy

It ended up raining last night. We kept changing our mind to go on the ghost walk, and eventually decided to do so. That was a mistake. Even though we booked and gave them our info, when we arrived at the hotel for the start, no one was there. We rang them and they said they thought we meant for tomorrow night - buggers! Anyway, it really started to rain then so it probably worked out for the best.

My left wrist was killing me last night - it hurt so much that I wrapped it up in a lidocaine patch. I think it was from holding my Hasselblad. I will try to be more careful today. The sun has come out for the time being and I'm just waiting for my friend to get back so we can go to Ybor City. It's meant to rain later in the afternoon - not looking forward to that. I also put a lido patch on my right hip last night before we left. Today we have a twist though because the left one is unhappy. Oh well, if it still hurts when we're leaving I'll toss on a patch there! Shame I didn't bring more!

Other than all the achy bits, I'm having a great time.