Preparing for battle...

Today I found out that I have to work another midnight shift this weekend... and I am ready... THIS was a Christmas Present from my parents a few years ago... bought as a joke... for me... to kill moths... I kept it but have never used it...
However, since my last experience with the killer moths... I think this weapon is warranted. I feel safer already! (Just need to find two D batteries... man this thing must be powerful! Better bring back up batteries, just in case!)

Kaleidoscope

I got an email from someone who means a lot to me. This person reflected on some things and I hope she doesn't mind that I am going to quote her here... She articulated it so well that I don't want to change anything... She wrote:

"The situation reminds me of the designs you can see in a kaleidoscope. I have one of those little inexpensive cardboard kaleidoscopes on my bureau. You can see the most beautiful scene as you look in there, but in just a second, even though you are very sure you didn’t move, one little piece of glass can fall and create a whole new picture. "

How true is that? WOW! I LOVE it! I can so relate to it! I wrote back to her and said that I also think about it because even when we think we have things adjusted just right... and then that piece of glass falls.. we may get frustrated.. but in order to even SEE the scene you have to have LIGHT...without light, there is no image in a kaleidoscope... so... you gotta have hope...and maybe even some faith... to see things as they are... I like that too...

It also fits with a conversation I had with my gal pal, Sara, tonight. We are both focusing on being healthy right now...we are both doing this very well I might add! (Insert applause here.) Inevitably the topic of my knee came into the conversation. I shared with her how much PVNS changed my whole mindset... how it changed me... and I shared more with her about how miserable I really felt at times...and how excited I am right now that I have been given the green light... that things are good for my knee... but how scared I am that at anytime that could shift and I could be back where I was...

But then... I had a bit of an EPIPHANY... (one of my favorite words by the way)... No matter what... even if PVNS comes back... it WILL NOT be a like it was... I will NOT feel like I felt. Why? Because... if I start feeling ANYTHING different in my knee I am going to Boston... It will not take four years to figure it out again...wouldn't add weight onto my body... because I have knowledge and know that I can be proactive... even if that PVNS colored glass falls back into my view... I will look at it differently... so very differently. And... if I shift things just slightly... it all changes...I have some control...

I think this kaleidoscope metaphor will stay with me for a while... Thank you to my very dear emailer!

Under the Knife

My friend Jill, in CA, had surgery today to remove her gallbladder. I am sure it all went well, but I had to give a shout out to her!

It was a good day today.. long, but good. I worked...then hit the gym... then had dinner with friends. I am tired, but feel good. My workout today included the elliptical machine, which has become a more regular part of my time at the gym.. but today I did a program that gives you prompts every few minutes... focus on pushing with your arms... go at this pace... use only your legs... reverse direction... this used to be my favorite program to do... and I had not dared to try it... until today. My goal was to complete 2 miles on the elliptical... after the machine prompted me to go in reverse... then switched back to going forward... my calves were going crazy... almost like spasms or something... but I slowed down a little abd was ok... after doing it the second time I had to get off the elliptocal and bike for a few minutes to prevent my legs from wobbling too much... but I hadn't finished the 2.0 miles... so after the bike.. I went back to the elliptical machine and did the rest of the two miles on manual... just doing one motion at a constant speed... then I did weight training with my legs... which felt like Jello. But it felt good!

I got an email tonight... about kaleidoscopes.... it was beautiful..... just like the woman it was from... much love to you... and I have so much to write.. but want to do it tomorrow when I have more time.

Scattered thoughts...

I worked today... taking tolls... it was the third day in a row... tomorrow will be day 4... It's not a glamourous job... and yes people ask about whether or nit we sell toll house cookies... but it's a decent job. Because of the way my mind works...I like to watch the people who come through. Yesterday there was this lady... who most people would say appeared as a soccer mom... she had the mini van... the middle aged practical haircut... not too long, but long enough to pull back when taking care of kids... she pulled up to the tolls with her windows up... which is when I made my soccer mom judgement... when she put her window down to pay... I searched the van for teenagers...hip hop teenagers.. but there were none... this woman was cranking some hip hop music... soccer mom getting freaky with it... some people are polite and answer me when I ask how their day is going... other people look at me like I have four heads... and put out their hand awaiting change. Ok... there are different styles to paying a toll... there is the throw and go... people who are perhaps, a little germ phobic an see me, the toll collector, as covered with germs... so they toss the coins into my hand without making any contact. Then there are the folders... people who think that folding the money somehow makes it easier to pass... and get highly annoyed when I take time to unfold the bill before I give them their change... then there are the smart toll payers... who announce to me how much money they are giving me... good thing... because I can't count or read the dollar amount on the bills....

Today... there were some attractive toll payers... some with gold, some without... but how can a girl working in a toll booth hit on a guy? Hey honey... is that a roll of quarters in your pocket or??... Hi. I don't know your name, but your toll paying profile tells me that you are considerate and personable... want to go out? Hey... here's your change...your receipt... and my number... call me! Hey Cutie... YOU get to go for free... IF you give me your number... ok... I admit... I try to check out something about the guy by their car and/or clothes. What man doesn't like to be complimented on their vehicle? And... sports is a huge thing... But... it's at most... a 15 second interaction... but... there are some hotties out there...

Today I got to work with some people I haven't seen in over a year.. because I took that amount of time off the tolls because it hurt... and then surgery... etc... and so I had a lot of questions thrown at me...and sweetly they told me the scars weren't that bad... then I got to work next to the man I have written about before... the one who had the stripper 'girlfriend'... he was better this time... his topics of conversation didn't include anything about her.. thank god!

I went to the gym this morning, before going to work. I didn't go yesterday because I was tired and my body hurt from all I had done last week... so I listened to my body and took yesterday off... I think it paid off... and today I only did the bike.. but I did 11 miles in 30 minutes... which I think is decent. I will go tomorrow and do some weight training and maybe the elliptical. I have added a lot of music to my MP3 player... because I was getting a little bored and unmotivated by the same stuff... so I am excited because I added stuff on thursday and haven't even begun to listen to it all. Today I read while on the bike... which I won't do again... music works way better.

I have decided that when I see my doc in Boston next summer... he will say, WOW... Kim, you look so great... how have you done it? I will tell him that I was able to be active and ate well... and am feeling better than ever! I am not going to put pressure on myself to lose the 100 pounds I had regained since the onset of PVNS... but I am going to lose at least 50 by then... I am trying not to focus as much on the numbers as I am on feeling healthy. But I know that the weight will come off... as a byproduct of eating well and being active... and that feels good.. I feel empowered to control my health and activities again. I like feeling empowered...

Healthy healthy healthy!!!

Balance

Ok... Usually when I blog I have a title and then I go with it... My title for tonight was going to be love/hate... in regards to going to the gym... and when I searched for an image to reflect love/hate... I saw this picture... which to me doesn't show hate... it shows that matters of the heart are a delicate balance...which isn't the topic of this blog...though... that isn't a bad blog topic...

so... this love hate thing... with the gym.... I love how I feel after I work out... after I have done something for myself... but... it is hard to get there... I can find other things to do... like sit on my butt and blog... so why is it like that? I love being there... not having to do anything else...but workout and take care of myself.... I like watching the people... looking for attractive men... seeing other people who are taking care of themselves too... all those people... that I don't know... are people with whom I have something in common... do they struggle getting to the gym? The gym where I go has do many different kinds of people there... all various levels of buffness... A lot of kids who attend/ed the school district where I teach go to this gym... and it is fun to see them... some of whom are now in college... not kids anymore. I did go to the gym today...after working... and it felt good.

My knee is holding up well at the gym.. but my left foot is bothering me... which makes me raise an eyebrow... I think I did something to it... stepped on it wrong or something when the boys were here... so I am walking tenderly... but it does ok with low impact stuff... so... I am just being careful. It won't stop me...

sorry for the babbling... I am beat.

Brothers

Yesterday I met up with my sister to drop off my nephews... they had been with me since Saturday and the time went by so fast. It would have been nice to have them longer, but as a family, their summer is pretty busy...

I have three nephews... ages 8, 6, and 4, soon to be 5... and each of them are so unique. They each have so many things going for them... the oldest loves academics... he wants to be a paleontologist (which I had to spell check to make sure I had it right!) He reads a lot...he has read the Harry Potter series twice...he is the cuddlebug of the bunch... he is very sensitive and at times gets very quiet... overthinking things... he has to know the plan for things...The middle nephew is more laid back... about some things he has an attitude of "who cares?"... things like wearing his shirt inside out... at times he seems like a kid that has no fear..... we have bets in our family that he will be the first of the three boys to try to be superman off the roof of his house...socializing seems effortless for him...and he is very smart too...shares his older brother's affinity for school...and the youngest...is perhaps the most determined... he knows what he wants, and how he wants it... when he laughs he makes other people laugh...he works so hard to keep up with his brothers...and he, like all the boys, loves animals... he feels slighted because he isn't quite old enough to come to visit me without parental supervision... to be honest... I don't feel like I know the youngest brother as well as I do the older two...yet... I hope that changes.

Having two of them, together, was hard work... last summer having one kept me busy and wore me out... but having two of them... trying to constantly keep an eye on both of them at the beach was hard... if one wanted to build sand castles and the other wanted to be in the water... it was hard to balance it. I think having them one on one is a beautiful experience...and I think they each need that time... I hope next summer I can do that maybe... one at a time... but it was cool for them to be together in some ways too... they entertained each other when I was cleaning up or doing laundry... and they did things together... the older of the two wanted so badly for the younger to be braver in the ocean. The oldest is a water baby... always has been... he doesn't care how cold... how big the waves...rain or sun... he wants to be in the ocean... the younger is more apprehensive of the water, the ocean... always has been. The waves overwhelm him a little...and he gets cold quickly. The first visit to the beach this trip... the younger was timid... he sat in the sand at the edge of the water and was content... he walked into the ocean a little, but was quick to retreat. He wanted to use his boogie board the way his older brother does, but was nervous... but... by yesterday... he was out there with his older brother, purposefully being knocked over by the waves. I think that the encouragment of his older brother helped him summon his courage. The older brother never once insulted the younger for being a little timid.

The boys bickered once in a while, but when I reminded them they were on vacation and they were here to have fun, it ceased... I asked them if they consider each other a frined and was happy that they said yes. I hope that continues... I am sure they will compete as they get older... grades, sports, girls, friends, etc...but through it all I hope they remain close.

The drive yesterday was pretty good...my sister and I agree that meeting partway was a pretty good way to do it. I think it may open up more opportunities for me to get the boys for a weekend here or there or to meet up for part of a day...

I am a little sad that they are gone... I have been pretty low key today... lazy really... although I am going to the gym in a little while.

I think part of my saddness is about... well... wondering if I will get to have a family of my own... how lucky my sister is to have the boys... and it also makes me think a lot about if I do have kids... which family members will they know...specifically... will they know my mom...it breaks my heart... but... it's out of my control... which I hate...

Beach Days with my nephews...

Tonight is the last night with my nephews. It has been great having them with me. They really are great kids. Tonight we were at the beach and we were making sand sculptures... it was fun. We made a lot and the boys could have stayed there much longer I think... but it was dark! They were so good to each other tonight... It was a busy day.. bowling... lunch at Friendly's...minigolf...and the beach.... They could have done a million other things... but I am tuckered out. Once again I am reminded of how hard parents work. These are good kids and have listened well, but it is hard work... laundry... food... hard to eat healthy when on the go so much... For the record... I beat them at mini golf..... but... they beat me at bowling... bowling still aggravates my knee a little... but not as much as it used to...
this is one of my sand sculptures: The boys loved it and it resulted in hours of entertainment!









This is a picture of the sky tonight... beautiful...

Boston Results

I saw my doctor in Boston yesterday. No new news to report really... As previously reported, there are no signs of PVNS. (Big SMILE!) I got to see similar slides of the MRI from before and after and there is a big difference. I will see if I can try to navigate my way through them and post them for the PVNSers out there. I got the answers to my questions... the numbness/tingling sensation I have on my scar and a little to the left of my scar near the kneecap is normal... the sugery involved some cutting near nerves that can be effected... full feeling may or may not return. I have NO RESTRICTIONS!!! I need to listen to my body and not increase more than 10% a week, but I can go full speed ahead. I do need to focus still on strengthening my quad in that left knee.. but he was not surprised that it was still weaker. My range of motion is good... the scars look good.. well... for scars... He had an intern come in and look at the incisions and talk to me about the condition... I told him that if he ever comes across it in a patient to be understanding and know how much pain is really involved... not like is described in the research... I relayed a story of having to stop grocery shopping, leaving a cart with food in it... and leaving the store because the pain was so bad I was about to cry... he was surprised and my doctor even said that he didn't realize it had gotten that bad. He asked me how I was doing compared to a year ago... and I chuckled... a year ago I was pretty heavily medicated post surgery... but I knew what he meant... in one word.... BETTER.... in two words... MUCH BETTER... I told him he was my superhero. I do have to go back in a year... with another MRI... to see how it looks. While it is gone for now... PVNS is aggressive and can return. My doc shared a story of a man who has been PVNS free for 4 years post surgery, but it is back... it is not yet causing symptoms, but they are now watching him closely... so... it won't be completely off my radar screen.. but it surely is on the perimeter!

I am back in Maine... with two nephews in tow... last night I went out with my sister and some of her girlfriends to celebrate some birthdays and celebrate they did! It was fun... I have never seen some of those dance moves before! the drive back involved a lot of traffic and sitting in traffic... the boys did very well... we hit the beach tonight and I will post pics soon... they are amazing kids... and I am already reminded of how much work it all is... but so worth it.



This was the beach tonight... gorgeous, right?

1 year since surgery...

One year ago today I was in surgery. I was oblivious to what was happening to me, my body because I was knocked out. My parents, sister, and Sara and Phil were waiting around to see how things were going. I am sure it was a long day for them. I remember we got to the hospital at like 5:30 a.m. and I wasn't even out of surgery until like 1:30 p.m. I think.

Wow... 1 year...

Tomorrow I head to Boston for a follow up appointment with my doctor. Since I know that I am free of PVNS, I am not stressed about the appointment. Yesterday I called my local doctor's office because I realized that I had not heard form them about confirming the referral and insurance stuff. Once again, not unlike last year, it was not a smooth process... in the end... it is all fine, the referral has been processed and authorized... but I ended up in tears on the phone with the referral woman... and felt stupid... I said to her that I was upset because when I called her in June I had relayed last year's experience and she assured me it would not happen again and that she would mail the referral authorization to me and would call me to let me know everything was set... I told her that she didn't know what I had gone through and all I had asked of her was to do her job and she didn't. She profusely apologized...and I told her that I appreciated it, but that it didn't mean much because it shouldn't have caused me anxiety yet again...

Why did I cry? I think that I just want this behind me... I want to be able to go to my doctor and have him look me in the eye and say, you are fine, you are going to be fine... and I wanted it to happen smoothly... and when I thought the referral might not have been approved... I just... didn't want to have to go through that again... and in my head I went right back to last year's saga and a lot of emotions surfaced.

I told my friend Suellen about it last night over some magical margaritas... and she asked me how I thought I was going to do tomorrow...with my emotions.... I think I will do ok... the drive to Boston... will be good... last time I did it by myself, I was going for pre-op stuff... and needed to do that trip solo. I am kind of glad that it has worked out that I am going solo this time too.... part of my self empowerment...post PVNS... The appointment itself should be more of a formality than anything else. I think that it will be good... 'closure' perhaps... that's such a cliche word... but I think it will be closure. I have a list of questions to ask and hope I get the chance to do that...

I have some... for lack of a better word, numbness...on that knee... around the incision that is over my knee cap... and wonder if that is normal and if sensations will return to normal. I want to know if the small amount of swelling will remain or will go away...how will the arthritis impact me from here on out? How do I strengthen my left leg muscles to catch up with the right ones? (Do I do more repetitions of weight training at the gym with that leg or do more weight with that leg?) How hard should I push myself? Are there activities I should avoid? Should I be icing it after activities? Taking Aleve? And the big one........

What is the risk of recurrence after being PVNS free for a year? Do I need more follow ups? future MRIs and appts?

I am swimming in the PVNS free diagnosis...and loving how it feels... but there is still fear...I have yet to retrain my brain to not worry about it...

I will let you all know how it goes... but may not be able to post until the weekend... following my appt. tomorrow I am headed to NY to my sister's house for the night... then on Saturday I am bringing two of my nephews back with me for a few days... I am very excited about that.

Feeling good today...AND 2.25 miles!

This morning I was lazy... I didn't sleep well last night, not sure why, so I slept in this morning. After getting up and around I went to get my hair trimmed. On my way there I got a breakfast sandwich from DD... not a great choice... so I did better for lunch... I had a salad and some watermelon. This afternoon my upstairs neighbor/friend hit the gym and we hit it hard! We warmed up with 5 minutes of cardio... used the weight machines for our legs...then did a little over 30 minutes on the elliptical machines. I did some of the leg machines that I have not dared to do since ... well.. I don't remember. I didn't do a lot of weight, nor did I do a lot of repetitions, but... I figured starting out conservatively is smart.. but I am hungry to do more...On the elliptical machine today I ellipted myself, (I don't think ellipted is a word..oh well...) ellipted myself to 2.25 miles!!!! I have been trying to push myself to go further and further... and I think I am going to stay around 2 miles for a while... as long as that means a half an hour. A few years ago when I had lost weight I started out really slowly... I can't get back to where I was after I lost close to 100 pounds now that most of it, if not all of it, is back. So. for now.. sticking to about 2 miles is good... and I will increase the weight training and will work my way back to 3.5-4 miles a day on the elliptical... I am on my way. Tonight My friend/neighbor Sue and I grilled and it was nice. We ate outside too and it was beautiful out.

I am planning on taking some Aleve tonight to ward off any stiffness, but I am sure there will be some soreness tomorrow... but not related to PVNS... Yay!

I was attacked... and I survived

Don't be alarmed...

I am ok... but I was the victim of an attack last night when I was working on the turnpike. MOTHS... Big freaking moths.... I worked from 10 last night until 6 this morning.... my first midnight shift and I had forgotten about the dangers of that shift... the moths.

I am afraid of moths...yes I am 6'6".... but I fear them... in the same way that some people are afraid of snakes or mice... I HATE them... they scare me... it amuses many people that I fear moths... but I do... Last night they were stalking me. There were three gang leaders and a lot of others waiting in the wings. #1 killer moth was HUGE... HUGE.. H-U-G-E HUGE... Right after a patron had paid and left.. this THING came diving at my head... I honestly thought it was a bat... that's how big this thing was... which for the record I am also afraid of... I was upset... and as I was realizing it was a moth it was dive bombing me... so I got as low to the floor as I could while trying to figure out how I was going to save my life and survive this thing...I thought about trying to escape out the back door of the booth, but I had locked the door earlier and it would have taken too much time away from the escaping to get past the killer moth AND unlock the door... so... I was within reach of the light switches... and as I was avoiding the moth from hell I reached up and turned off the lights inside the booth... thinking that the moth would leave the booth and head toward the bright lights above the toll...please please please killer moth... go towards the light... it worked... it left the booth and went to the light... and I kept watch of it in case it decided to come back. It cast a HUGE shadow that kept looming over me ominously... I closed the booth doors, all of them and hoped that no customers would come through because I didn't want to give the moth a chance to reenter the booth. It kept flitting around and I could tell it was warning me that there was more to come. After about an hour of it torturing me... it disappeared.... I know it didn't go away... it was plotting with the others...watching me from afar... I tried to relax a little and started knitting. (Yes I was knitting... which is a great way to stay awake in a toll booth all night!) At this point I had turned on one small lamp inside the booth and was watching closely for any signs of moths. I had bent over to adjust the yarn and when i looked back... ahhhhhhhhhh there was Moth #2... not as big as the other one, but this one was faster.... it was near the light and flapping its wings at me... I then had a few customers in a row and told them I was being attacked by moths... people were amused...so.. in the midst of waiting on people I lost track of the sucker. But I knew it was in there with me... Every 20 minutes or so he would rear his ugly head and then hide again... by this point I had armed myself....a broom... a rolled up newspaper...and insect repellent that I found in the booth... So I was ready for him... but he was smart.. he hid out near the many wires that keeps the toll operation working and I didn't dare to hit them, fearing I would shut the place down.... a couple of his buddies came close and I swatted them... One fairly good sized one perched itself on the side of the toll booth... I held the newspaper like a baseball bat and killed him... and it left that gross powdery moth plasma on the paper... I left him out there...dead... hoping to ward off other moths... setting an example for others....it didn't work... The third leader of this gang came in and wasn't messing around... He was the most spastic of all of them... which creeped me out a lot.... flapp flap flap... chaotic flapping... ahhhhh... and I chose a weapon... the insect spray... I sprayed him... from afar of course...he flailed about more... and I had to open up the back door to let the air circulate so I didn't die... I thought he would leave so that he could get fresh air.. nope... so I sprayed him again... and more flailing... I realized that its wings were wet form the spray and it couldn't fly... which it was trying to do... and then I felt really bad... guilty... it was suffering... so I summoned all my courage... grabbed a thick wad of paper towels and smooshed it... ewwww... it was gross. That final strike was at about 3:00 in the morning... and I was on edge until the sun started coming up... So it was a long night.

I really hate moths... it stems from a childhood science project... my teacher had asked us to collect insects, we had to kill them by putting them in a jar with alcohol soaked cotton balls, then we had to mount them on a board with straight pins and identify each insect...I did my bug board... no problem... but the day they were due I was riding the bus, with my board, and one of my classmates got on the bus. She sat with me. (For the record this is the same chick that told me there was no Santa... I'm not bitter!) She had her bug board too... BUT there was something very very wrong... her bugs were not dead... they were alive... crucified on her bug board... still moving from time to time....it was HORRIBLE... the bugs.. and I only remember moths... were moving...sometimes erratically flapping their wings and were pinned to this board... I remember I didn't want to look, but I couldn't look away... and remember really looking at the moths.... they are hairy... dusty... fuzzy looking freakish things.... scary... and the m ore they flapped the more scared I got... This fear was compounded years later at my parents house... whenever I would come home late they left an outside light on for me which attracted a ton of moths... who dive bombed me as I tried to fight to get my key in the lock and make it inside without getting bitten... then there was the time I was working as a nanny... I was sitting on a porch, in broad daylight, with one of the kids I was watching. He was in his wheelchair and we were just enjoying the afternoon. He had asked me something and I had looked towards him. When I looked back towards the lawn this moth came out of nowhere and came right at my forehead... I think it was going for my eyes... I screamed and ducked of course... which prompted this kid to laugh for hours.. literally... he was so amused and just when he would stop laughing he would think about it again and it would get him going again.. belly laughs... tears.. the whole thing.... So... people... Moths are out to get me.. plain and simple. A coworker learned of my fear of moths and one fall I returned to school to find a moth, in a baggie, on my desk... way to retraumatize me! She owned up to doing it, claiming she was helping... to desensitize me to them... not the case...

Yes I know moths don't have teeth... but when they are attacking me... I see their fangs! Irrational? Maybe.




This post has NOTHING to do with my knee.. but it is about trauma... next time I am taking my moth racket with me... a few years ago my parents bought me this tennis racket looking thingy... that is actually a battery powered bug zapper... it was kind of a joke gift, but... it is now going to be a part of my turnpike gear.

Phew.... I'm ok... I'm ok... but look at these pictures... they are a scary scary creature... and they are after me....


(Perhaps this is another post for my therapist to read?!)

Biking

I rode my bike this morning, for about a half an hour... not long I know, but.. my butt got a little sore and my knee was a little tired... not as bad as I thought though! I need to get my butt used to biking... I should see if there are any bigger seats... I already have a seat that is larger than most, but... by BFA could use something wider! I am working tonight and am planning on taking a healthy meal with me. I need to go grocery shopping, but want to make a good list before I go...

Later!

Promised pictures...

Ahhh... this is my mountain... ok... it's not my mountain, but I love it there. It is a similar shot to one I have shared before, but no matter how many times I am there I have to take new pictures... the mountain looked so healthy to me this year... strange to describe it as such, but in years past it was still easy to see lasting effects from a forest fire that happened many many years ago. This year, the mountain looks 'whole' to me. I am not sure if that makes sense or not, but that's the word that kept coming into my mind when I was there. The colors in the mountain were beautiful.


This is a picture of my mom kayaking... We got a short ride in together... and I wasn't sure we would get that chance. I like this shot because she is looking at the mountain. Her red floppy hat is to help keep the sun off her... the medicine she has to take makes her more sensitive to the sun. These are just some pictures from my kayaking adventure... and of a sunset taken from the shore... it is a peaceful place.













This is my view when I am kayaking... I like to relax a little. My knee felt good throughout the kayaking adventures! Yahooo!!!!



This picture was taken in one of the inlets off the river... mom and I named it "Tadpole Terrace." We gave it that name because the tadpoles are numerous and they rest just under the surface of the water, to get warmed by the sun... and when you kayak close to them they kind of jump out of the water and it startles me every time... and despite my best efforts I usually get startled badly enough that I scream a little (or maybe squeal is a better word!) ... like I do when I am at a hockey game, sitting right behind the glass and the puck bangs off the glass... Anyway... I tried to get a picture of the little suckers... and I did... I love how mom laughs when I get startled... I really try to not scream, but just when I think I have done it... they get me!


That's all for now... just wanted to post a few pictures as I promised... beautiful place....

Trip cut short....

I am back at my parents' house... Mom hasn't been feeling great... not eating much at all and has thrown up a little. Dad's concern had been growing. Today he kind of pressured her to come down to go to the hospital to get some fluids to see if that would offer any relief. She told us that she has started having more symptoms... blood in her urine... since Saturday... and as soon as those words escaped her lips Dad was up and packing up the camper... that sealed the deal. We got back here and mom talked to her doctor, local doc, not cancer doc.. and he was not surprised... said that it could be a good thing... could mean the tumor is shrinking and her system is getting rid of it... of course my mind goes to wondering about if it is getting bigger and has further attacked her kidney...but mom and dad like the shrinking thought better... so I will try to jump on that train... they are at the hospital right now getting a bag of fluid... I hope that helps.

Mom and I did get a kayak ride in together... I will post some pics when I get home. We went a short distance up the river together and she was pretty tired. I was glad she wanted to go though...Dad was out in his boat too and mom ended up hitching a ride back to shore with him and mom told me to keep kayaking... so I did. not for too long.. but it was nice. I also went later in the day... another solo voyage, but it was beautiful... like I said, I will post pictures.

I was VERY excited to find that I could get in and out of the kayak more easily than I have in some time... I was worried and half anticipated tipping over in the river, especially when trying to get out, but I didn't. My knee allowed me to do this... and in years past when I would kayak my legs would get numb.. that did not happen this time... awww it felt good to be on that river again...

My activity level was not as high as I wanted it to be, but I did do well eating for the most part. Overall I would say I had more healthy habits...

Camping...

Hello Blog Buddies,

I am going to be AWOL for a while... I am going camping with my parents! TOnight I am at their house and tomorrow we are heading further north! Yikes! (Yes Rico... to R46 T895.3) I am very happy about it. I got to visit with my grandmother (dad's mom) and one of my aunts today.. as always it was a great visit! Mom is not feeling great today... but maybe tomorrow will be better...

I went to the gym this morning! Yeah.. that's right.. my legs were tired from yesterday, but I did 25 minutes on the bike... not wicked fast, but at a good pace... Tomorrow I will walk.. maybe on my parents' treadmill before we leave?! I bought lots of healthy food to take with me, so there will be no excuses... tonight I sat on the couch for a while by myself and heard funny things coming from the kitchen... it sounded like this... "Hey Girl... come out here... I know you want to come out here....just look at me.. I am delicious..." It was Mrs. Dunster! For those of you who have never experienced this woman.. she is divine... she makes donuts... tasty donuts... and she wants people to eat her donuts... look at that picture.. she has an evil glint in her eye, yes?

I turned her down.. and then I heard.... "Well Girl... I know you want one... but if you don't have one, what about my neighbor Mr. Cheesy Poof?!" Are you kidding me? Another weakness....

Sorry Mrs. Sinister.. you and your cheesy poofs have no power here... right? Right..... (so far!)

Happy 4th of July! I will be back!

Activity Log...

Today I went to the gym... did 8 miles on the bike with some good tension on there and did some weight machines for my legs... THEN... I went for a walk tonight for an hour and a half! Phew!

I’m sure if I had a therapist, he/she would find this all very revealing.

I got a very touching email yesterday from a woman who has been following my blog, almost from its inception. It was very humbling to hear from her. Thanks A! She too has PVNS, and although I do not know the details of her situation, I am sure she has gone through a lot too and I hope she is doing ok. She wrote to me following the 6/29 post… the letter I wrote to PVNS. She thanksed me for my courage to post it…I so appreciated hearing from her and hope she writes to me again. In her email she mentioned that at times she has found herself crying while reading my blog… I am not sure what prompted the tears, but I am touched… that something I shared could connect with someone on that level…

Her email reminded me that I really do not know how many people read my blog. I see from the cluster map that people from many places have at least viewed the blog, but I don’t know how many people visit it regularly. Her email was a humbling experience for me. I wonder about whether or not people see me as egotistical… after all I write about myself, often times at great length. It makes me wonder why I think my life and the happenings in my life are so important that I need to put it out there for people… and even more so, believing that people are actually interested in my life enough to read about it… but then I back peddle and tell myself that it’s not about what other people think, because it is my blog and it is about me… but then I wonder if that confirms the egotistical piece mentioned before… this is proving my craziness to many I am sure…

My blog is something… I created for two reasons… as a place to vent and as a way to reach out to other PVNSers. I created this because I felt like ‘Debbie Downer’… you know.. that person whose answer to the question ‘how are you’ always has a dramatic negative response. I felt like I was constantly complaining about my pain and limitations and felt like my negativity was better placed somewhere else, besides on the shoulders of the people in my life. …in addition to wanting a place to vent… I had searched for information on PVNS and found a discussion board that made me even more afraid than I already was… every site I found was scary… I felt like the diagnosis of PVNS meant that my life as I knew it was over… and that I would surely lose my leg from amputation or worse, the pvns would become malignant, would spread, and kill me… So I wanted to put some kind of perspective out there that showed that PVNS wasn’t the end of the world.. which is ironic, because at times, I felt like it was… In some way I hoped that by writing about it, I would in some way be able to ward it off…I kept looking for other information, for someone’s experience with this crappy disease that did not have dire results… and I couldn’t find one. I also couldn’t find anyone else who had PVNS that offered any hope …. So a blog seemed better than simply keeping a journal… I thought, hoped that other people with PVNS would find it, and be able to relate.

Recently I took issue with a couple of other blog buddies.. well not with the buddies, but with their sentiments…which in actuality is taking issue with myself…. I eluded to it before, in a previous post… .. but… I have processed it a bit and want to include it here… (because you have not been exposed to my crazy thinking enough for one day!) Anyway… some people, via the blog, have made me feel that they perceive me as some kind of champion for all I have been through…and for how I have handled it… I talked to a friend about this recently… I told her how uncomfortable that made me… because I don’t think that I have been a champion… I see that I have handled what has been thrown at me, sometimes I suppose I have handled things well, but not always. I told her that I think that hearing that, or feeling that term… champion… is uncomfortable for me…. Because I think that with that comes some kind of responsibility. She listened… and understood… but then told me that it’s ok for me to not see myself like that… and knowing me, she thinks part of that is that I see my own flaws more than other people do, and that because I am the person I am… I would prefer that title go to someone I would see as more deserving… that made sense to me… and she also told me that she and her sister, also a good friend of mine, have talked a lot about what I have gone through and do see me as inspiring… it’s even hard for me to type that word, because it seems like a word with so much power. Maybe my experiences could encourage other people.. but inspiring… that is just a huge word. She told me to look at what has happened… just physically… to my body … and to think about how I made the choice to do something about the pain and decided to have surgery and decided to do the PT … etc… I see that perspective, but I also see it as… I did what I had to do. I don’t think the surgery was an option. Without it, I can’t imagine what state of mind I would be in and how much pain medication I would be on… So I don’t see that I made any inspiring choice.. if anything, it was a selfish choice because it would potentially stop the pain…

Anyway… the what I wanted to say about it is this… I am going to not be as analytical about it all…(After this post!) My blog is what it is… created with integrity and mindfulness… not something that requires justification. (Not that any of you have asked me to justify it, but because at times I expect myself to do so.) In some ways I did want to have a blog to help people in similar situations… Wherever this blog goes, whoever it reaches, in whatever way it reaches them, is all good… and I will accept people’s compliments gracefully and feel honored that people have taken the time to read about my experiences… Thank you.

I would enjoy hearing from more people who have followed the blog regularly… drop me a line to say hi… at ihavepvns@aol.com

Hooray for the First of July

It's the first of July... and I have had a few days to digest everything... and I am still pretty emotional about it... People have been very excited for me, some even teared up for me... which was very touching... but other people... I think... have wondered what the big deal is... why I am so emotional about it. I think in some people's eyes I had this weird tumor type thing, had it removed, and have recovered...and... in Hollywood terms... that's a wrap. For me it hasn't been close to being a wrap... I haven't been as open about my anxiety related to the recurrence part of PVNS as I have been about other things... I haven't wanted to have other people worry about me any more than they do already. And.. I think the anxiety has been greater than even I realized... but.. I am calming down... and shifting gears.

As you may have read in my letter to PVNS... I am reclaiming myself.. my life. I will do what I want to do and will do things to improve my quality of life. I no longer need to hold myself back at the gym...on some level I have been limiting myself because if PVNS was returning I did not want to give it opportunity that may help it move faster... not that PVNS operates like that, but in my mind it does. In my head I figured that if I did too much it would open the door to PVNS and I refused to enable it... so now I can push harder. I do not expect to be back doing 4 miles on the elliptical 4-5 times a week, but... I can set some goals and gradually get there. It's not as much about losing weight as it is to feel better... Prior to the onset of PVNS I had worked really hard and in just over two years had dropped about 100 pounds... PVNS caused me to pick up all that weight again.... anyway... when I had lost the weight... I felt great. I felt healthier than I had felt... probably ever. I made decisions on what I wanted to do, not what I was physically capable of doing. I want to get back to that point.

So... I am going to continue my blog...I am sure it will continue to help me move forward in my life... and in my life I will focus a lot on being healthy... it's not as much about losing wight... but I will probably mention pounds lost... but... more because I want to get back to where I Was before PVNS... well.. maybe not back... I don't like the idea of moving backwards... but I want to move forward to a healthy weight where I resided for a while...

So... July first... I announce today, that to accompany my healthy knee... I will work to get the rest of my body and mind healthy... perhaps I will choose a certain day of the week to blog about health...but I am not sure yet. We'll see...

I am planning on going camping for the fourth of July... but I am already planning on how I can be healthy during that adventure.

Hooray for the First of July!!