Wednesday, February 28, 2007

Diagnosis

I saw the Neurologist/Pain Management specialist today. He came highly recommended from my vascular surgeon, and I can see why. He also sang Dr. J's praises to high heaven (as I do, too).

When Dr. K came into the examination room, he sat down and told me this would be a one hour visit. He would take my medical history, review my charts and then we would go over treatment options. I was quite impressed, because most doctors don't spell it out for you-and I wondered if this was because I was seeing him in a teaching facility. I just now googled his name, and he is the first google entry-more on that later.

He does his exam after taking my history and the nurse assists me in removing the Unna boot. It has definitely done its work-the wounds are shallower in the week's time. He notes the muscle atrophy, the degradation of the skin,, color abnomality, and a temperature difference of five degrees between the two legs. What does this mean? I appear to have classic symptoms of RSD, Reflex Sympathetic Dystrophy. I asked why this and not Peripheral Neuropathy and he explained that RSD is a form of PN.

Treatments for this, you ask? Well, not simple ones, that's for sure. He's recommending that I get one to three spinal blocks. These must be done under general anesthesia, because if they puncture an artery, I would stop breathing. Okay. I understand that, and oh joy, going under general? That means I don't really eat for about a week afterwards. My small appetite is going to get smaller, that's for sure.

The muscle atrophy leads him to recommend Watsu exercises in a warm pool three times a week. That's going to be tougher. I don't have a heated pool and don't know anyone with a heated pool. Because the wounds are open, public facilities won't allow me to use their pools, and I don't know that I'd want to put my open wounds in a public pool.

He mentioned that if I did have an unheated pool, insurance companies typically will pay for a heater to be installed. I joked that I wanted to buy a jacuzzi spa, would they cover that? Dr. K then said he has seen that happen, but they need to have proven therapeutic benefit noted by a doctor. So, I have to find some way to get the exercise in the heated water, have him or Dr. J note the improvement, then lobby my insurance to pay 4 grand for a jacuzzi. Have I paid enough into the karma account that this would actually happen for me?

I should also note that when I put my painful plantar faciitis heel against a jacuzzi jet for 10 minutes when we were in one in California, the relief was incredible? So two medical issues would benefit from the one jacuzzi, to be honest. Hmmm.

So, I leave with a script to get into a warm pool 3x a week. I also am given two packets of information about RSD and Watsu exercises. Then I notice that the RSD Clinical Practice Guidelines were authored by my doctor. Dr. K leads the International Research Foundation for RSD/CRPS. Dr. J, while being a good doctor and a fine person to work with, INSISTED that I must see this man. No one else. He sent me to the expert. Wow.

So, I see Dr. J in the morning to get a new Unna boot. At this point, I think I need to figure out just how long I'm going to be using them, because I can't really work on the Watsu as long as I am wearing them. Then again, I need to do some work in finding out just where I can go to actually do the Watsu.

It just hit me that if I'm up at these crazy hours, it'd be damn nice to hop in the jacuzzi to make the pain go away. Cruddy part is that I'd probably have to lay the money out and then have the insurance reimburse me. Bummer.

Sunday, February 25, 2007

Y'all know what I hate, right?

Okay, you all know me pretty well. What peeves me more than anything else? For those who are new to me or the blog, the correct answer is that I hate looking like an ass or being unprepared.

Today, I was both. I was supposed to be at work at 7am to adequately prepare for the design class we were giving. My cell phone rang at 8am to find out where the hell I was. Strike one, I look like an ass, and strike two, I'm NOT GOING TO BE PREPARED! Frantic, I run around the house dropping numerous F bombs and get out the door in 10 minutes. I walk into work 20 minutes before the classes would start.

Now, to those who sat through my classes, they probably thought it was okay. Okay. That's not what they deserved. I needed to wow them with the products I demonstrated and my expertise with the design. If I'd been there on time, I would have nailed it.
Couple that with the frustration with myself that continued to mount with each subsequent group I taught and you probably get an idea of how I felt.

Boss says I did okay. I wanted to be fantastic and amazing (and I know I wasn't). Instead, I was told did okay in spite of showing up an hour and forty minutes late.

There is so much riding on these classes. We have to show corporate that the customers respond to them by purchasing what we're demonstrating-and I know my product grouping didn't do that today. We burned a lot of payroll, a lot was riding on it and I didn't pull my weight.

My head was not handed to me and I wasn't told to take a hike. However, I do believe it will be a long time before this event will be forgotten. I would be livid if the situation were reversed, and I suspect my boss was holding her anger with me because she could see that I was far angrier with myself than anyone else could ever be.

Today sucked.

Friday, February 23, 2007

More good news

Today's good news is courtesy Gameboy.

He sees a psychiatrist for his Asperger's and assorted alphabet soup of issues. He has since he was six. When we moved to Tampa, we lucked into finding a great one. Dr. P really seemed to enjoy working with our son, and said so much when our insurance changed. He continued to see older son, but every other month, for a much reduced rate in an effort to keep him as a patient.

Eventually, the off label uses of son's meds led Dr. P to send us over to the local university's psychiatry department. He wanted to be sure that Gameboy was treated by a good doctor, so he even gave us the name of the supervising psychiatrist that he should see. We were very lucky, Dr. S sat in with a great resident, Dr. D. She's got a great approach with him and has been great at addressing our concerns. We have had more med changes in the time we've been with her than we ever had, because she understands where we are coming from.

For this reason, we're making good progress. He usually sees a doctor once a month, sometimes every other month. For the first time ever, he doesn't have to go back for three months. We all agree that he's doing well-he has rough days and always will. However, reasoning with him has become a lot easier with the Abilify.

Yes, for a change, things are working out!

So close...

Tonight, for the first time in a few months, I went to sleep in my own bed. I tend to toss and turn in my sleep, which would wake me up with the leg in the present condition. Off to the extremely comfy couch, where the lack of room prevents this and allows me more sleep (this being a relative term)

I lasted an hour and a half. The Unna boot doesn't seem to do too well with the typical movement I make in my sleep. Someone (cough cough) is so happy that I was back in bed that he decided he needed to breathe loudly in my ear. Yeah, that's it, breathing loudly...

I'll try again tomorrow night.

Thursday, February 22, 2007

And now, the progress report on the leg....

Insert teletype noises, as if listening to 1010 WINS! :) Scratch that.

I saw Dr. J yesterday. I was honest with him, that I haven't used the debridement ointment twice a day every day. It's impossible to do that and work full time. I explained that it is not an option for me to be off from work and/or screaming in agony while working. He then informed me that if he'd had his way, I would have been out of work for three weeks and in the hospital for debridement when I'd come in back in December. He's a damn good doctor because he listens to the patient's needs in figuring out treatment plans.

So, I graduated to an Unna Boot. This resembles a soft cast. It's a layer of medicated gauze, then an ace bandage, then medical wrap. The average boot uses a layer of calamine permeated gauze, but I'm allergic to that, so mine is a zinc oxide layer instead. They wrap it tight. Very tight. It's like Arnold Schwartzenegger is giving my leg a bear hug with all his might. However, Arnold will not let go of my leg.

The Unna Boot has to stay dry and gets replaced once a week. Fortunately for me, the office is now 5 minutes from work, so I can take a break or go on my way in for the now weekly appointments. Better than it being on the other side of town, especially with the funky traffic that we've got here in Tampa.

This already made me pretty happy, as the boot means we're getting closer to the ulcers going away. To top it off, the nurse taking me back is the one who weighs everyone. She'd weighed me back in March (Scary number), then again at the first visit in December (down almost 30 pounds) and then yesterday (down another 11). It's very gratifying to see that a change in eating habits and not a diet is what's doing all this. I know it's not going to all melt off, but heck, I'm still losing without doing any exercise. I'm shooting for another 35 to 40 pounds off.

So, good news all around. I'd say we're at mile 20 in the marathon of healing...Yes, that is typically known as 'the wall'. I'd call that bear hug on my leg a wall, but I'm climbing it...

Tuesday, February 20, 2007

Family

It's funny how we're born into this world related to others that if not for that one connection, we would have nothing to do with whatsoever. No shared interests or anything that would keep a connection going, other than having the same mother and/or father. Perhaps shared grandparents.

This blog has shared some of the downside of my large family. My mom's side has more than it's fair share of screwed up individuals. They probably think I'm as messed up as I consider them, lol. However, watching some of my relations make asses of themselves, treat others poorly or treat their own bodies like crap really made an impact on me as a kid. I think this makes it easier to understand why I don't have such a close bond with every sibling-and why I have a close one with Kathi.

On the other hand, we choose our friends. In the past month, I've told a few of my oldest and dearest friends what I've always thought, but never spoken-they ARE family to me. They've been there through thick and thin, supported me as I've supported them, laughed with and at me and enriched my life in so many ways that one hundred blog entries would never completely convey.

I feel I've chosen very well my 'family by association'. I find it worth mentioning after talking to Donna this week about this year's family vacation probably being a driving one. While we'd LOVE to visit California again, it's not in the cards.

So I'm thinking of the wonderful road trips of my teens (me, Kathi, Dad and the 'Captain Banana' bathing cap) and contemplating places like Atlanta, Virginia Beach, the Outer Banks. A family vacation means we should GO AWAY to experience things new and different. If we stayed home, we wouldn't really do much of anything, so it's important to ALLEZ et Cherchez.

Donna commented that it sounded so nice, and that she'd love to go. I told her she's more than welcome to come along. She IS family and while she's not related by blood, she's related by love. I feel that way about Joyce (and kin), Rich and even Bob.

After getting off the phone with Donna, I pondered the enormity of it all. Yeah, I come from a big family-of friends.

Suppose I need to send some Kleenex your way, ladies.

Monday, February 19, 2007

So close, and yet so far...

Remember the intro to ABC's Saturday afternoon sports extravaganza, "Wide World of Sports"? Jim McKay's voice would intone "The thrill of victory, and the agony of defeat..." over images of the best and worst in sports. I spent quite a few Saturdays of my youth watching it and can still hear that music running through my head. The agony of defeat holds more meaning this morning, which I'll get to in a moment.

Some of you know that I'm married to a major gearhead. If it's got an engine and wheels and is racing somewhere, my man will be watching it (and younger son, too). When I started dating this man, I found out how passionate he was about motorsports, especially Nascar. As I wanted to understand what made him tick, I started following it. It wasn't too difficult-as I'd worked with people at a previous job that shared his passion for the sport.

I told him that I'd follow the sport for a while before choosing a favorite driver. Where I lived was an easy area to follow the sport-there was even a Nascar themed store right in the mall I worked. I could go talk the sport with like minded individuals. The driver I wanted to root for had to be sportmanlike and not a blowhard. So it was a process of elimination. I was down to two drivers in a few months, Sterling Marlin and Mark Martin. Sterling showed every bit of class that season on moving down to allow another driver his shot at a win when it was clear to Sterling that his car didn't have enough to make it to victory lane.

However, the driver I ultimately chose to root for was (and is) Mark Martin. The man is passionate about the sport, but is honest with himself-almost to a fault. He'll praise his team to high heaven, but won't brag on himself. He's consistently been a top 1o driver and if not for Nascar's propensity for interpreting their rules inconsistently, he would have been a champion a few times.

Yesterday was the Daytona 500, the HUGE race that begins the racing season. A race that usually finds Mark leaving the track somewhere at the bottom of the ranks. He's not a restrictor plate driver, and the first race of the season is restrictor plate racing. That he usually ends the season in a top spot after leaving the first race ranked in the 30's is a testament to the man's racing ability.

This year is different. Mark's with a new team, a new manufacturer and in a new car. I walked in the door from work last night to find Ed hyperventilating. The race was red flagged (cars stopped on the track) with three laps to go and MARK WAS IN THE LEAD. This was a nailbiter.

Alas, he lost the race by a nose. Yes, I'm upset-his sportsmanlike way meant he didn't rub Kevin Harvick to slow Kevin down and guarantee that Mark would win. However, at the same time, I'm ecstatic that the man is leaving Daytona in second place.

This year is supposed to be a part time season for Mark, he's supposed to take his first 'break' at one of his least favorite tracks, Bristol Motor Speedway. That said, I have a feeling that the man will be racing that track this year-because he'll be too high up in the points to consider anything else.

Wednesday, February 14, 2007

Happy Valentine's Day!

It's funny, things that were a big deal when I was younger don't hold as much sway.

Take for instance, today, Valentine's Day. I wanted nothing more than to be showered with romantic gestures and gifts. Flowers were not really needed, because I'm somewhat practical. A gift, a card, dinner out-that was what I wanted.

Having kids, the focus has shifted. I've got presents for the kids. An iPod shuffle (or 'ip', as the small ones are known) for Chef Jr, scored off the Apple refurb site (squee!). Gameboy is getting a Pokemon Mini game with several cartridges that were purchased for 5 bucks off shnoop.com. Chocolate is part of the gift, and we'll probably do a chocolate fondue.

Why the change? I guess the comfort of our relationship is knowing that one day is not the make or break of showing how much we love each other. Would I like gifts, or would he? Heck yeah, but our finances prevent it. And I'm okay with that.

Tuesday, February 13, 2007

Lyrica is not making music

So, the hope that Lyrica would work as well as the Neurontin was in vain. The initial dose didn't work well, I spoke to Nurse M about increasing the dose. It's thought that this medication does not work better with higher dosing-but I wasn't at the highest dose.

Alas, I now have been taking the recommended amount for four days. Look at the time that I'm posting this and you'll see that I am not getting sleep again. Argh....

The bright spot was that in talking to Nurse M, I asked about alcohol consumption. Neurontin's monograph clearly states that you shouldn't drink at all, but Lyrica's states that alcohol may intensify it's effect. So, tonight, for the first time in nearly two months, I had some wine with dinner. I don't know if it's because I haven't had any in forever, or if the bottles we've had for two years have really come into their own, but it was a DAMN GOOD GLASS OF WINE!!

Drinking the wine begs the question, if the meds aren't doing squat and alcohol will intensify it's effect, what will it do? Anyone? Anyone?

Friday, February 09, 2007

TGIF

So, when the doctor told me I *needed* the painkillers and I scoffed, little did I know HE WAS FRIGGIN RIGHT!!!!! Yes, stupid me. I needed another dose at 9pm, but I was busy closing the store, so I figured it was no biggie to wait until I was done. Forty five minutes later, my leg was screaming for mercy. Okay, I've learned my lesson-keep popping the vicodin. There's occasional breakthrough pain from the debridement meds, but not full out WAH WAH WAH pain. So, get some stock in Watson Labs, because I'm buying their pharmaceuticals for a while longer.

Tonight is the time trail for Pinewood Derby. The boys cars are almost done, just some minor decaling and lettering. Hoping I can squeak enough juice out of the camera batteries to get pictures.

Jane is out of the hospital. I happened to be over in Lakeland to cat sit for a friend and called Mom the other day. The word was she was being released, and I was very close to the hospital, so I went over and got her. She is very happy to be sprung, but tells me the hospital staff is great there. Thanks for the info, but I don't ever want to experience it first hand. The only hospital stay I want in my future involves a trip to Hawaii.

The boys are off from school today for the Florida state fair. Due to the time trials, we're not going today. Instead, I'm off work on Wednesday, so I'll probably have the kids complete their homework in record time because we'll go once they finish it.

That's all the news that's fit to print right now...

Wednesday, February 07, 2007

Odds and Ends
















I don't really have anything to 'essay' about or have the typical conversation, but here are some snippets of things that have been going on or that I fell are worthy of comment.

I thought that Kathi had a link to the blog. I was wrong, but recently remedied that . In the early origins of the blog, she was dubbed 'Giggles'. The name has always fit her, she truly lives to laugh. She decided to go back to the beginning of my ramblings and commented about her nickname her on my piece of the net. Her husband is an extremely funny guy and was amused by this nickname, but it left him puzzled. "If you're Giggles, does that mean I'm Shits?" ROTFLMAO!

Jane is still in the hospital, however, daily we're informed that she'll be coming home 'tomorrow'. I suspect this is not because the doctors have expressed this directly, more that Jane is tired of being imprisoned in a hospital bed. Hey, who can blame her? Taking bets on whether tomorrow really is the day...

Sad news. A coworker's dad passed away suddenly last week. He and his partner both work for us-nice guys. After covering his shifts for the weekend, he came back to work yesterday. In expressing my condolences, I asked if his dad had been sick. The only issue the 60 year old man had was a bout of congestive heart failure last year. This was his second episode, but otherwise he'd been healthy-he'd even spoken to his son the day before and was fine. Scared the shit out of me for Jane's situation, as she's got other health issues on top of CHF.

I periodically peruse the unclaimed funds websites for the states I've lived in. Not only for my current name, but my previous. Heck, I also look up friend's surnames, too. My most recent foray into the NY State's OSC site found one entry for Jane, two for Nancy and one for my ex mother in law at her (deceased) mother's address.

It didn't take much prodding from a friend to do what I knew was right. I contacted my ex's sister, knowing that she'd handle it the right way. I got a nice email back. Ex's mom has been in a nursing home for two years now and his sister is carrying the burden of settling estates for dad and brother who passed last year and selling the family home. My heart goes out to her, because she has a lot of work in front of her. Selling a small house in a soft real estate market is never easy. I suspect that she did a lot of work on that house to get it in show worthy condition.


I had two people become the glue to me this past week. My 'sorta little sister' pinged me on AIM, after we haven't been in touch for a while. It's good to catch up-and I feel like I need to give her big sister advice. Namely, you don't move to Brooklyn or Queens UNLESS you've got a job lined up first! Still, I'm glad she sought me out and I will work to keep that glue fastened.

My first Maryland friend contacted me, fearful that the tornado swath last week affected us. Fortunately, we're further south (in case any of you are wondering). It was nice to catch up on his happenings. I've been guilty of putting off phone calls for a while and I'm so thankful that he picked up the phone. Amazing that you can pick up where you left off with some people without missing a beat.

And why is it that I procrastinate so badly when it's time to do a self appraisal for work? I dread these things. Usually, I'm quite objective about rating other's performances (and my boss seeks out my input already), but when it's time to rate myself, I see all the things I'm doing wrong and not as much of what I'm doing right. Oy. Perhaps next year's will be easier, but I still feel quite green in this job-it's nothing like any other retail job I've had. As a result, I think I'm doing horribly, but the boss reassures me that I'm fine and with some time, I'll be much better.

Dreaming of vacations, and trying to figure out how the heck I can get to the place pictured above. That's the Seth Peterson cottage in Wisconsin. Visit the website at www.sethpeterson.org. The cottage was designed by Frank Lloyd Wright and is unique in that you can stay there. Pretty neat. However, the price tag per night and the distance involved means this is probably in the realm of something to do when I'm retired. (Yeah, like that will ever happen) Hey, that doesn't stop me from dreaming. :)

Speaking of vacations, Liz has invited me up to Indiana for a girls weekend in May. She's hosting several ladies from an online group we've been in at her brand new beautiful house. I think that the lack of sleep now is probably good preparation for spending a weekend with this group. Should I go (and I really want to), I think my sides will be sore from laughing the whole time. I love my house full of men, but sometimes, girl time is needed, lol.

Sunday, February 04, 2007

Weekend off

It's my weekend off and I'm doing exactly what I want...not much of anything. The health has taken its toll on us, so to veg is a good thing. Next month's weekend off is already scheduled for a cub scout camping trip.

I finally have all of the meds prescribed at the doctor's appointment earlier this week. There's a new debridement ointment. Man, it itches like you would not believe, but when I changed the dressing this morning, I could see the difference after just one application. I am hoping that the three weeks of this before the next visit to Dr. J will clear out all the infection and smelly, gross stuff. If it progresses at that rate, then I'll be in the Unna boot by the end of the month.

The hives? Still here, and probably will be for another couple of weeks. That's typical when I'm allergic to medication. The jury's still out on the Lyrica, but I'll give it a week before I sing it's praises or bitch about how horrible it is.

Jane's still in the hospital, although she may be released tomorrow. Her creatine levels are high, not a surprise after having a cardiac cath yesterday. We spent the afternoon with Mom yesterday, as we were sure she was going stir crazy. Somehow, the idea to hit Red Lobster at 4:30 to beat the rush must have been shared by many other Lakelanders. We were told it'd be a 30 minute wait, but they called us in 5 minutes. Insert dancing smiley here. I am always up for a meal at Red Lobster.

While most people are watching the superbowl tonight, I'll probably be playing with the taxes. I don't have every document I need, but I've got enough to get it started...cross your fingers.

Thursday, February 01, 2007

Two steps forward, one step back

Visited with Dr. J and nurse M today. The Solosite that I thought was doing a crappy job received the same review from them. Actually, nurse M wanted to know *why* I was using it, and Dr. J had to admit he'd prescribed it! I was prescribed a different debriding agent and will pick it up tomorrow. This one doesn't hurt as much, but boy, it itches like you would not believe.

While I was hailing Neurontin as the king of all nerve pain relievers, it decided that it was abdicating. I have hives from head to toe, though not as bad as I have had from other meds. Lyrica is the replacement after nurse M saw the hives. I swear, my medic alert bracelet would rival any necklace 50 cent would wear.

Dr. J reiterated his endorsement of the Vicodin. Much as I hate being on pain killers, he tells me that I need them. I was told that if *I* am complaining about pain, it really must be bad. This means I *NEED* the meds. He also went out and printed out the info about the Neurologist he wanted me to see-the appointment is on the 27th. He thinks nerve blocks are probably the best course of treatment.

I asked about the valve replacement surgery. This has been bounced around several times during visits, although this isn't why I'm in so much pain. Heck, the valve doesn't cause any pain, it just makes my leg look like complete and utter shit. Oh, and it prevents me from doing a lot of stuff. One doctor in Mississippi and another in Hawaii are trailblazing this procedure.

Results must be really good, one of his other patients is headed to Hawaii next week for the surgery. Yay, I'll get updates on it first hand from Dr. J. He tells me that as bad as mine looks, this guy is in far worse shape. He's had three DVTs (I've had one), a half dozen clots (three here) and both legs are involved. He's only 35. I feel bad for the guy

That said, Dr. J admitted that the ulcerations that I have are the bane of a vascular surgeon's existance. There's nothing that can be done to prevent ANY of the vascular issues I have, but many of the problems can be fixed with surgery or blood thinners. The ulcers, however, present a host of problems and I seem to be running into every one of them. There are no easy or quick fixes for them, and it drives the doctors nuts. C'est la vie.

In other news, Jane's been admitted to the hospital. Not sure what the update is-she told Mom that she didn't want visitors tonight. She's pretty depressed about the whole thing. Seeing her situation just strengthens my resolve to be very diligent about my health care. I can't be in the hospital, and being admitted would send me into a depression, too.

The late night wake up call seems to serve a purpose. I end up blogging to take my mind off the pain until the Vicodin kicks in. Decent trade off, don't you think?