Posted by TallGal at 10:05 PM
Posted by TallGal at 11:55 PM
He loves the ocean... always has. He was so excited to go to the beach for the first time this summer. I love this picture because he just ran for the water...arms up and so excited.. and happy... pure joy. I love that. He ran and ran and ran.... the water actually felt warm - I didn't swim yesterday but I did today and had fun.
Posted by TallGal at 10:26 PM
I survived driving in Boston. The directions I had gotten from the internet were helpful...though in places were a little vague... but I got to see the hotel my family will stay at and got to the hospital fine. It is a big place. I had not walked around much when I was there before. The appts. went well. I gave blood...and did't faint.... I was worrried about that... afraid actually. I then had my pre op appt. and waited for over an hour in the waiting room before the hour long appt. THe good news is that I am healthy... except my knee... and they put a special note on my file.... "Longer Bed Needed." They did tell me that they have to accomodate some of the celtic players, so I should be all set.... Hmmmmm.... Celtic players.... can I be on their floor?
After my appts. I found my way to the highway and proceeded to go to my sister's... well I met her and her kids at a baseball game...their minor league team. It was fun. Her boys did great... and cheered loudly for their team. After the game there were fireworks and 2/3 of the boys love them. The youngest hated them in past experiences, but did better last night. This morning my oldest nephew and I set off on our road trip...back to my house.
He is 7... will be 8 this fall. He is amazing. He did well on the drive here and was so good all day. We played mini-golf...in the massive heat and humidity... he loves mini golf. Then we got some groceries and then hit the beach around 6:30. We had a blast. I will post some pics at some point. We played in the water, in the sand... and attempted some sand castles. We had brought kites, but it wasn't windy enough. I am not sure what tomorrow will bring, but I am sure it will be fun. He is so smart...amazing really. And I am not just saying that because he is my nephew... but he is BRILLIANT!
Posted by TallGal at 11:12 PM
I had crazy dreams last night. I think it is because of having to drive to Boston tomorrow and go to my pre-op appt. I have a little anxiety about it. My knee was hurting a lot last night. After going to a friend's place for dinner two of us went out to have a drink. My knee felt pretty good and it was a beautiful night. Before deciding where to have a beverage we walked around quite a bit...well...compared to how much walking I have done lately. By the end of the night my knee was ready to call it quits. So today there is a sharper pain than usual, but I know that there is an end in sight. (Positive thoughts...positive thoughts...)
Anyone know much about dreams and their meanings? In one of my dreams last night, I saw someone who has visited my dreams before. The last time I saw her was when my sister was pregnant with my middle nephew. My dreams about her were so vivid...her cute little toes, her white sandals with a flower on them, her sundress... I was convinced that my dream meant Sis was going to have a little girl. But Sis has three boys... I hadn't thought much about that little girl, until last night. She was in a dream...older...but it was her...I saw her at the end of a long hallway holding on to a hand of a person who I cannot describe...He was much taller than her... I know it was a man... they were sideways to me, but she turned her head to look at me... and that was it. She was not as vivid as before...the colors were not remarkable...but it was the same girl. What do you suppose that means? Maybe she'll come to my dreams again.
Ok... so today will be spent doing some more organizing and planning tomorrow's venture to Boston. I am also trying to get some things ready for when my nephew is here. He will be with me through Friday. I am not sure how much blogging I will do while he is here, but I will try. I am very excited about our time together. I will bring my camera and maybe post a picture or two of what we do together. He's such a cool kid.
Well, I am hungry...so I need to go make some lunch. That reminds me.. .I also need to figure out what to buy to have here for my nephew...hmmmm...
Posted by TallGal at 1:02 PM
So I told you all that I was going to have an adventure today. Well... it wasn't what I expected. Part one of the adventure was taking care of two chihuahuas for one of my friends. Her daughter was here from Denver and my friend was having a baby shower for her. She didn't want to have the dogs barking all day so asked if I could take them. I agreed,,,and because of the second part of my adventure, planned on leaving the dogs at my house....Part two of the day was supposed to involve a date...the key words being 'supposed to.' It didn't happen. I will give him the benefit of the doubt...for now...he did call, but... I think my gut is telling me that his story for not meeting today is not quite right. We'll see. Not sure why dating is even a part of my thoughts right now, with so much else going on. Although...it would be nice to have a strong set of shoulders to lean on. Oh well... maybe there is some handsome, strong, male nurse at the hospital in Boston. I am going to go to a friend's house for diner tonight...then maybe we'll head out on the town, after all, I look so cute today...why waste it. So since my date didn't happen I went to the same places I had planned to go on the date...but I took the dogs, who proved to be good company. Good thing they are small dogs and don't need to walk a lot. My knee was not up for a lot of walking. So... me and two chihuahuas went to the ocean. I am sure it was an interesting site... a six foot six inch woman walking two chihuahuas who combined, weigh less than my biggest cat. It was a good day spent with canines, but I am still a cat person.
Posted by TallGal at 4:33 PM
Today I moved some things around so that life after surgery will be easier. I moved the small refrigerator that I usually have in my classroom into my living room so that I can have cold drinks within reach. Right now there is iced tea and water in there. No captain and diet coke....yet. (Just kidding mom!) I also made room for a chair that sara and Phil are going to let me borrow... one that is higher than my furniture and has arms on it so it will be easier to get up from. I did some organizing in the room that I want to use as my art room. I prefer to paint at the dining room table, but is makes more sense to keep all the paint in one space. hopefully I will feel up to doing some art after surgery. I did some cleaning too....That doesn't really sound like a lot of things to do.. but it has taken me all day. I can do some work, then have to get off my feet and relax. Frustrating. It's kind of throbbing tonight.
The cats enjoyed the day. For some reason they get all excited amidst the chaos and were very energetic. Later in the day Tess, the senior female in the bunch, has been very affectionate and has stayed close to me. I think this means that she is feeling more comfortable with the new cats. Prior to bringing them home, Tess made sure she had some time getting my attention. Since bringing them home, Tess has kept to herself a bit more. Ahh... some bug just went running across my floor.. Tess saw it too and ran after it. I caught up to them and squished the bug.... ewwww... at least it wasn't a moth. Gross!
Oh... I wanted to say hello to D in California. He is in his early twenties, facing his third surgery from PVNS. He suffers from it in his ankle and is awaiting an ankle transplant... I had no idea such a thing existed. His battle with PVNS has been frustrating. I am glad to have had the chance to communicate with him. He agrees that having a strong support system is wicked important. (I added the wicked part... I doubt people in CA use the word wicked...) Good Luck D.
I am trying to get organized for Monday's pre-op appt. I am a little worried about the blod donation part... I have never given blood. I know... it is a nice thing to do... but I haven't. I worked at a few blood drives in high school and figured that was easier than getting stuck with a needle. I am worried because I remember seeing people who gave blood and then practically passed out... eek... I hope that doesn't happen.
I guess that's all for tonight... tomorrow I am hoping to have a fun adventure...if I do, I will share it with y'all.
Posted by TallGal at 9:17 PM
Why two posts today? Because...it's my blog and I can do what I want! This is a less sappy post than the last.
I started learning to use my crutches properly today at PT. NOT fun... I will be pretty buff, if I practice enough...and by the time this is all over, I will challenge anyone to an arm wrestling match and will win!
I had to say good by to "K," my physical therapist today as she heads for Arizona next week. She introduced me to my new therapist....whose name is Sara... or maybe Sarah...I take it as a good sign and wish "K" the best of luck... she is good at her job...and a great person. Thanks K!
My knee is bad today... it hurts, but I am ok.
Posted by TallGal at 1:18 PM
This started when I met Sara in college, in a weight training class. We were friendly, but never spent time together outside of that class. Two years later I had been living with two of my friends and decided to move out, on my own. Sara took my place in the apartment and we spent time together. Sara and Phil were together at that point so I also slowly got to know Phil as well. My first teaching job was close to where Sara had grown up and we spent more time together. Somewhere along the way I would say we became soul sisters and Phil is now my big brother. Phil met Matt and Melissa, who were not yet married, through his job. Eventually Phil started coaching with Matt. Matt and Melissa then started dating and got married and Phil and Sara grew closer with Matt and Melissa which is how I have come to know them.
I was sitting with four people whose characters could be described as too good to be true. Each of them are kind, generous, loving, caring, and genuine. To find those qualities in such high quantity is rare. I realize its uniqueness... and am in awe that I am lucky enough to share my life with them. We sat together last night and talked...talked about so many things. As cheesy as it may sound, our lives could be made into a movie for the Lifetime for women channel. We aren't always politically correct, we may tell each other how badly someone's feet stink, and we may belch without holding back, but the respect and affection we have for each other is amazing.
Phil and Matt are true gentlemen. If I ever find a man who is like them I will be so lucky...I envy Sara and Melissa for the relationships they have. The regard that they all have for each other, as husband and wife, is precious.
Last night, the scene in Sara and Phil's living room was like a family gathering. Phil and Matt were playing video games on one side of the living room while contributing to the conversation Melissa, Sara, and I were having. We talked about our strength, as women. We talked about my knee. It is such a safe place to talk about things and to get support. My family of friends complimented me on handling things well and being strong. And even though there are so many days when I feel I am weak and not handling this at all well, I believe them. They do not say things to simply make me feel better...yes we are there to help each other through things, but we are honest with each other. So I believe that I am handling it well. I know there will be days that self-doubt will creep in, but I know that I am doing ok. My friends reflect that back to me.
We also talked about something Melissa and Matt have been facing since the birth of their son over a year ago. Tobias has reactions to various foods. Melissa has sought out help for her and her family. The amount of research she has done and the hours spent pouring over material have given her son the gift of health. Along with Matt, she has completely changed her eating habits and it is paying off. They are a beautiful, beautiful family. Sara paid a compliment to them last night, saying that she will be a better mother one day because of watching Melissa and Matt be parents. I share Sara's belief.
Another part of our conversation last night was about faith and religion. We shared our personal beliefs about christianity and spirituality. None of us attend church regularly, though we all had religious affiliations, or at least our parents did, as we grew up. We talked about believing in a higher power and about not finding a religion to which our beliefs seem to be congruent. I mentioned two books that I have read and re-read and often go back to... "Conversations with God" and "The Celestine Prophecy." These are books that articulate some of my beliefs. Both books claim that coincidences don't exist. Think about that for a moment. There are no coincidences... So does this mean that fate and destiny constantly guide us? I am not sure that I would credit my path in life strictly to fate and destiny, but I will say that sitting with these people last night, I knew...absolutely knew...that these people are in my life because it is meant to be. I believe...believe that we do have control over our lives...that we have free choice...but I do believe that there are powers that be that are a part of our lives.
In that living room, five thirty something adults from different parts of Maine... all of whom are college educated, whose parents are all still married, who appreciate nature, sat...together...supporting, sharing, laughing, and eating some organic chocolate... together.... coincidence? I think not...
So when I wonder about all of the crap with my knee... I take comfort in knowing that it is happening for a reason... I do not yet understand that reason, but my life is full... "my cup runneth over" as they say and, for today, I know I am where I am supposed to be, know I am with the people I am supposed to be with.
To Sara, Phil, Melissa, Matt, and Tobias...... I got nothing but love. Thank you all...for being.
Posted by TallGal at 8:51 AM
Yep... that's right folks. School is done.. I am on vacation!!!
I am looking forward to enjoying the next couple of weeks before surgery. I am hoping to fit a lot in before going under the knife... I am also hoping that after surgery I will, eventually, feel like going out, even if I am on crutches. I am sure the crutches won't be all that comfortable, but... I am not above having friends drop me off at the door of my favorite local pub while they find a parking spot. My knee is very sore today... seems to be a sharper pain than usual, but still have the constant aching. I was up a lot in the night and it was really hard to take the first few steps... the countdown is on.... about 26 more days...until surgery... not counting today and the actual surgery day. I know the time is going to go by fast.
I am pretty tired today... my coworkers and I had fun yesterday, but it took a lot out of me... who knew celebrating could be so exhausting?
Today, when the other teachers and I were leaving school, several asked what I was doing this summer. I told them I was having knee surgery and I was amazed at how many people had not yet heard about it... not saying that everyone should know what is going on with me, but people were very surprised. Everyone assumed that my March surgery fixed everything and that I was back to 100%. Either I have been doing a great job at seeming like I am fine...or people are oblivious. I find it hard to believe that people didn't notice me struggling, but oh well. So... I got a lot of well wishers today and people who want to help if they can. Again... I have a lot to be thankful for.
The last day of school is usually really exciting... it is this year as well, but in a different way. I feel like school ending takes some pressure off me. It was really challenging a lot of days... hard to get up, deal with the pain, and get through the day...and I did it... granted I did use a lot of sick days, but I made it....This was not one of the most successful years for me professionally because of all the pain from my knee, but I did the best I could. I am looking forward to next year. Another special ed teacher and I are going to deliver our services a bit differently, and I am excited about it. I will be able to focus more on teaching math, so this summer I will get to develop some math lessons. I will also get to work with some of my coworkers who I have not worked with in a few years, so it will be nice.
School ending today is another reality check for me... that this is becoming more and more real. My gal pal "Mayo" called this afternoon and asked what I was doing... we chuckled when I told her I was online searching for a raised toilet seat. Granted, I do feel like I am an elderly woman these days, but shopping for a higher seat to sit on to do my business is a little nuts. My mom had suggested, a long time ago, that I look into getting one because it would be easier to get up and down if I had one. I do admit that one of the more painful parts of my day is getting up and sitting down on the toilet... it is painful... to top it all off, my physical therapist told me Monday that getting one was a good idea. I told my mom, and I know she was thinking, 'ha ha... I was right!' So, my friends, I am going to try to get one of these raised thrones and see if it helps my knee. I have no idea how to shop for one. How does one decide what to pay for such an item? Toilet paper..... $1.89....... toilet seat cover (the kind that match your bath mats).... $9.99... getting up from and down to the crapper without pain.... priceless?? I am sure this will become part of the humor in all this... and it will give Mayo and I some more bathroom humor to discuss.
I am signing off, heading to see Mayo, her hubby, and some other friends who recently moved in with them... for dinner and maybe a game of Balderdash. Ever play? It's FUN!
Posted by TallGal at 3:07 PM
Posted by TallGal at 8:20 PM
[The peacock is a painting I did for my sister for Christmas. ]
I just got off the phone with "Rico" who enjoyed laughing at me...not with me, mind you...about a few things, non blog/PVNS related. It's always good to talk to "Rico." While talking to him he told me that he has tried to add comments and that for some reason they did not post... he also told me that he bets a lot of people are reading the blog and just haven't been able to add comments....so I have changed some of the settings and believe that I have fixed the problem. (If I don't have a comment from Rico soon I will know I did not fix the problem!)
After I talked with him I checked some email and discovered a message from the blog viewer in Norway and from the woman I wrote about... I was so excited to hear from them. I love hearing from people who are following/accompanying me on this journey. It is so exciting. In a way, it makes me wonder if I should edit more of what I say, but I won't...because I created this so I could be as honest as I want to be.
Anyway.. I had PT today... and she asked me how I was feeling. My pain level was higher today, but it is my own fault. I did some heavy lifting this weekend and shouldn't have...but it was worth it because I now have a dishwasher, that works, in my apartment. Yahoo! I HATE doing dishes... HATE it...in addition to being horrible, it kills my back because the sink is low. Even when I put the dishpan on the sideboard it isn't ideal. If only the sideboards were higher...built to accomodate my height.... My PT did not let the pain stop me from doing some new exercises. I am going to be sore tomorrow. Thursday is my last day with her because she is moving far away, but she is handing me over to someone else, who I am sure will be helpful.
A week from today I will be in Boston...for pre-op stuff. I will be donating a pint of my blood and meeting with the dr. who will knock me out. I am going to go down alone... I had some people offer to go with me, but for some erason I want/need to go alone. I think it is part of this process, part of just realizing what is going on, and letting it sink in. I think the drive will be good for me....think time. After my appt. I will be driving to my sister's house to pick up my oldest nephew to bring him back here for a few days. I am really excited about it.
I want to get this posted, in case Rico wants to say hello... he also told me he may be starting a blog... I say GO FOR IT!
Posted by TallGal at 8:42 PM
I had someone from Norway look at the blog! He also has PVNS and has had 5 surgeries... Sorry to hear that...but wanted to give a spcial Hello to Torben.... thanks for visiting the blog... I would love to know more about your experience with PVNS... Email me at IhavePVNS@aol.com.
Posted by TallGal at 7:01 PM
Hello Blog Buddies...
Just a quick note today... I am off to get some work done for school so that the last day of school can be my last day as well.
My post yesterday was a little intense... some days are like that for me. Today I feel a little better...maybe because I emailed my dr. in Boston and he was encouraging. I had emailed him about my prognosis...telling him that I had read a lot of things online about horror stories... he believes that the best results from PVNS involve an aggressive first surgery...that recurrance usually happens when people have tried to get rid of the PVNS with less invasive measures with more than one attempt. Because this is my first surgery and because the bone structure appears strong... the prognosis is good...insert sigh of relief here... Also I will follow up with him regularly to monitor everything.
I know the threat of recurrance is real...very real...but I am going to really hope and believe that this surgery will be the beginning of the end of PVNS for me.
Some people have asked me about adding me to prayer lists at their respective churches... Most of you kow I do not attend church regularly and that I see myself more as a spiritual person than religious...but I believe in God...and believe in the power of prayer and positive thinking, so I do welcome any positive thoughts...and appreciate them a lot.
Today is father's day. Happy Father's Day DAD!!! My dad and I have always had a strong bond. We may not talk as often as I talk with my mom, and may not get as deep into things...but there is a bond unlike any other. Safe... Dad makes me feel safe...always has. There is something about having a soft place to land with someone who is so strong. When I was little, I was often his shadow...in the woods...in the garden...and he took me fishing even though he had to bait my hook and touch the fish I caught because I wouldn't. Dad... I adore you... adore the love you have for our family.
Enjoy the day!
Posted by TallGal at 11:58 AM
<-The picture is a painting by Alfred Gockel entitled "Perfectly Balanced." I found some of his paintings on Allposters.com His work is beautiful! Something about it speaks to me. I think I will purchase some of his prints at some point, after all this craziness. I will add a link to Allposters, hopefully to his work. Check it out...it is beautiful.On today's blog I want to say hello to someone I have met through a PVNS discussion forum... whipptcloud is the username she uses on the forum. When she was younger she was a professional stunt woman, very athletic. She has now had PVNS for years and at 53 years of age, doubts she is going to live to see Christmas this year. I can't begin to tell you her story, because I will not be able to do it justice, but it is a scary story. She has been battling it for a long time. For her, PVNS not only recurred, but metastasized and travelled to other areas of her body. She has reached a point where doctors are unable to, or won't do anything to try to help. I thank her for sharing her story on the forum because it is, I am sure, hard for her to put it out there...maybe it makes it even more real to her...
When I had my appt. in Boston, my dr. seemed optimistic that after I recover from this surgery, I will be able to do whatever activities I want to do. He did say that PVNS has a high recurrence rate...and I emailed him last night to see, based on his experience with this condition, if he feels my case is one which will recur. I have not heard back from him yet, but will let you all know when I do. I also asked him if he has a guesstimate on how large the tumor is. My left knee is at least 2 inches bigger than my right knee...(according to measurements taken at PT.) and I wonder how much of it is swelling and how much of it is tumor.
I do know that I will be very pushy when it comes to following up on this disease. I want to be checked regularly to see if there is even a hint of recurrence. At this point I have had three doctors, a physician's assistant, and my physical therapist tell me that my knee is healthy....structurally at least. My bones are strong and so are my ligaments. Some patients with PVNS are not that lucky...the tumor can cause bone degeneration with drastic results. So I am determined to have my knee checked regularly (and other joints if I suspect ANYTHING) to try to preserve my "healthy knee." It is so hard for me to believe that my knee is healthy, given how it feels and how it has restricted me so much.
Whipptcloud has become very knowledgeable about PVNS and on the forum offers a lot of information and advice to others on there. And while her story is scary... it is real, as are the stories of other people on the forum who are suffering with PVNS or friends of people who are suffering. That's another reason I wanted to do this blog. I want people to read about this... I want people who have PVNS to not feel alone. This effects 1.8 in a million people. So it's not like there are other people in my community who have this and who can fully understand.
Maybe I have done too much reading about it online. I understand that the internet can be an amazing tool, but that sometimes it does not offer optimistic information. But, as I have said on here before, I have often felt consumed by this disease. It is present in my mind ALL the time.
I wake up throughout the night and try to reposition myself and wonder if tomorrow will be a decent day or a bad day. When I first wake up I assess how my knee feels and how quickly I will be able to get going in the morning. I wonder if my first steps are going to be painful or really painful...and make sure I have something close by, like furniture, that I can lean on when I first stand up. Last weekend I went to Sara's house...she was planting some flowers in her garden and I had to sit on my ass and watch her because I knew that I couldn't kneel, couldn't stand on my knee long enough to help her...so I sat and watched her and talked of course. I had a GREAT time visiting with her, but I just can't get away from this. At work... whenever I have to travel to another part of the school I wonder how much pain I will be in by the time I get to the destination. I've gained a lot of my weight back and wonder if people think that my slow speed in the halls is because of my weight and feel sorry for me. Not everyone in my building knows what I am experiencing. They all knew that I had one surgery in March and everyone assumed that my problem was fixed then... and it's not like I want to put up a huge flyer explaining to everyone what is going on... partly because I don't want to talk about it will everyone I work with....ironic that I am blogging and say I don't want to share it with everyone... but at work it is different. There are some people who I am close to at work who have been sooooooooo supportive. But I don't want my co-workers to feel sorry for me every day... don't want anyone to feel sorry for me...Maybe that doesn't make sense....if I am putting it all out there, what do I expect? I don'tknow...
Many people know that my father has suffered from back pain for years... he has problems that cause pain, instability, and a lot of other issues. Dad has dealt with it since... well... I think since I was a sophomore in high school... which was 1991. Dad...I don't know how you have handled it all this time. I can at least get into a reclined position that is comfortable for me... but I am sure with his back...even that is challenging. I have even more respect for what Dad endures...and for Mom who has been there with him all the way...and because, for both of them, mentally I am sure it takes its toll. There is no escape from constant pain....
I have thought about checking into support groups for chronic pain...but I am not ready to say that this is not going away... and in my mind I see those groups as being for people who have pain and will have it for their entire lives. I also have thought about acupuncture...but think that I am going to hold off doing any other kind of treatments until after surgery.
I am hoping to enjoy the few weeks of summer I will have before my surgery. One of my favorite things to do in the summer is to go camping and kayaking... and I am looking forward to doing that before I have my surgery, but it worries me at the same time. I am so afraid that kayaking is going to be really painful. that getting in and out of the kayak will be very difficult, maybe impossible. What if it comes back and I can't regain an active lifestyle? I am really trying to take things one day at a time but... it is hard... I will do things...even if it causes some pain... becuase it hurts when I do things, hurts when I don't... so I might as well do things....I need to try to enjoy things and if it gets unbearable, then I will stop.
I am trying to count my blessings too...believe it or not... there are so many things I am thankful for... my family, my friends, for pain killers.... (that was my feeble attempt at cracking a joke after being Debby Downer... I take them sparingly.) And I am still here...
Many people I know have gone through things much more significant... so I am trying to keep this all in perpective.
Throughout this I have thought a lot about one of my uncle's who has battled cancer for some time now... he recently got great news at his routine check-up... cancer - free.... but I know given all he has gone through, my uncle, his wife, and family are grateful for that news, but fear the news at the next check up...for them... very consuming. Another relative I have is an amazingly strong woman...surviving the emotional devistation of divorce...while others may see it as having happened a long time ago...is, I would be willing to bet, is still very much present....yet she has become even more beautiful and strong.... "Rico"...recently lost his mom, who was perhaps his best friend, to cancer...who manages to reach out to me with calls and emails... and others whose battles have been more private.... so... I have a lot of people who have gone through a lot...and made it through...or are making it through...day by day.... You all give me strength.
When I started blogging today I didn't anticipate it was going to be such an intense post. I apologize for posting things that may perhaps cause people to worry about me... I know that will all of the love and support I have, I will get through all this...
Posted by TallGal at 9:41 AM
I don't dare to say it too loudly...but.... today was another lower pain day... you can't see me but I am dancing a little...disco style while sitting down... to celebrate... what a gorgeous day...today it has been sunny and nice...feels like summer. I am sooooooooooo ready to be out of school for the summer. I have to go in one day this weekend to get some things done and pack up some things to bring home for the summer. Apparently I am looking ahead to next fall a little.... I stopped at a store today that is going out of business and they had all school supplies 80% off so I bought some things to have in my classroom for the kids. I may take it into school Monday and leave it there because I doubt I will want to be carrying a lot of stuff into my classroom in the fall.
Oh...before I forget... some blog friends have asked about the cats...and who is who... so... the order goes, top to bottom....Tess, Stella, Lucy, and Sheldon.
this is a short entry... I am tired tonight and Will Smith is on a movie on tv...so I think I need to go watch him. Have an AWESOME weekend my friends!
Posted by TallGal at 8:04 PM
Posted by TallGal at 5:33 PM
Today was a better day. Physically the pain was less today and I was able to walk without too much pain...of course I was walking slowly, but at least I was mobile.
I have a lot of things to be thankful for...today especially. My middle nephew, who is 5, had a minor surgery today and all went well. It was great to hear from my sister after they got home and know that it was behind them. My nephew was pretty brave. He did tell me yesterday that he was a "li'l nervous" but that he was going ot be asleep through it all so he knew it would not hurt. Good kid....
I got to talk to my mom today. She and dad are "out of the woods" for a few days. (They came home from their camper.) This would be the first opportunity they would have to read my blog, so HEY mom and dad, if you are reading this!
Knowing that people are reading this makes me wonder a little if I am putting too much in here...I don't want people to worry more about me than they already do... but I also want to keep things real here... in case there are other people with PVNS who read this, they will know they are not alone. And writing about all of this is helping me... yes it makes it more real...real that I am going to have a major surgery, but it also makes me feel less "in my own head." I'm not sure if people will know what I mean by that or not...Many people who know me, know that I am a thinker... sometimes an overthinker... so writing things out here somehow makes me rehash things less in my head.
Anyway... I did my PT exercises this morning before I got out of bed. (Very cool that I can do the PT while still in bed!) I will do them again tonight before going to sleep.
I think that I am going to re-read Conversations with God... or at least start re-reading it. For those of you who don't know that book, it is not a religious book, but a spiritual one. I see it as a philosophy...one that I connect with. I find I go back to the book at various times. The books title and ideas have been surfacing in conversations and emails with people...so maybe it is time to revisit it.
Well my friends... (including my family members) ... I am signing off for now. Thanks to all of you who are accompanying me along this path. You know it is hard for me to lean on people... but I know that I can lean on you... and I love you for that.
Posted by TallGal at 7:20 PM
I survived PT... it was good. I have some exercises to do and I think they will help. This physical therapist really listens to me and gets that doing some exercises make things worse... so we are doing minimal impact things.
I feel better tonight than I did earlier today...maybe tomorrow will be better...
Posted by TallGal at 7:52 PM
Last night my knee was hurting badly enough for me to take some of my pain meds. Usually when I take them I get a tood night's sleep and wake up feeling a little better. Last night it didn't work out that way. I woke up throughout the night, trying to find a comfortable position. So when my alarm went off this morning I knew it was going to be a rough start. My knee was stiff and aching....bearing weight on it seemed to aggrivate it. I called into work and told them I would be running late, knowing that my pace was going to be very slow. I tried to get myself going...tried talking myself into going...and I just felt like I needed to keep my knee up and wasn't sure how I would tolerate the day... so after a lot of indicisiveness... I called the principal and he said to take care of myself and stay put....I felt relieved, but also frustrated that my knee dictates everything.
I do have physical therapy today... I really want to make sure that I do get strong... I have to...recovery will be hard enough and if I can do anything to make it easier I need to...and want to... but it will be hard to get myself into a good frame of mind today to do it. But I have to...just have to. This surgery better work...better get it all out so it doesn't come back.
No worries Blog Buddies (term I am stealing from Ross the Intern) I will be ok... and will write more later to let you know how the PT went...
Posted by TallGal at 9:55 AM
Posted by TallGal at 6:19 PM
It is a beautiful Sunday here... sun's out and flowers are blooming. I should be finishing the cleaning job I started yesterday, but opted to do some painting instead. I think what I am painting is going to be used for one of those spinny round things that people have in the center of their table... you know for when you put condomints on it and turn it so everyone can get to everything. Not sure how it's going to come out... if it's any good I will post a picture when it's done.
I won't finish it tonight because I am heading out soon to hang with my girl Sara. Her hubby is off chaperoning a senior trip so she and I are going to grill...and perhaps have some spirited beverages. Fun stuff... makes it really feel like summer.
I should probably do my PT stuff before I head out. I think knowing that I am doing things to help me prepare makes me feel better. The friends I have seen this weekend have said that I seem happier...I do feel better...for sure.
Anyway... I am outta here for now... it is too nice out to stay on the computer.
Posted by TallGal at 3:00 PM
It is a dreary day here...overcast and sprinkling once in a while. I woke up this morning to a phone call from my mom. She and Dad are camping for the summer and their cell phone, one of those old bag car phone thingys, doesn't always get great reception. We tried talking last night, but it didn't work so she called back this morning. It was good to talk to her and update her on what has been going on.
I feel so good after having talked with the physical therapist yesterday. I feel...dare I say..... hopeful. I went out to dinner with Joleen last night, accompanied by her 4 mos. old St. Bernard puppy (44lbs. of puppy). It was nice, we ate at a restaurant that has tables on the wharf so her dog could join us. I then went to the beach.
The beach was almost empty, though I did run into my professor from my law class this spring, and the sun was setting. It was nice. I took the picture of my foot as I walked in the water a little.
Things are coming together as far as surgery goes... My parents are going to go to Boston with me for the surgery, along with Sara and Phil, and "Lola," a.k.a. my sister. I have to go to Boston a couple weeks before my surgery for pre-op stuff...and to donate a unit of my own blood in case I need a transfusion. I have never given a unit of blood...like at the red cross or at a blood drive, so this will be a new experience. they told me that it will take like an hour??? Seems like a long time to give a little blood... oh well.
Craig called today and we had lunch at one of my favorite local spots. We shared some hot wings...yummy... I know..not exactly the healthiest choice, but they were delicious!
I am in the midst of doing some cleaning/laundry, but I have to take breaks along the way or else my knee gets really bad. The cats are running around like crazy...Lucy and Sheldon are definitely feeling secure in being here. It is fun watching all of them. They all make sure to get some quality time with me...or maybe they just like my lap!
Hope everyone is having a great weekend. Time to get off my butt and clean some more......
Posted by TallGal at 3:42 PM
Posted by TallGal at 1:21 PM
It is so frustrating...to try to do something good for myself and then have so much pain. GRRRRR.
On the upside, my new male cat finally has a name... Sheldon. (He is the only cat in the pics with a moustache.) The other cats, in order from top to bottom are: Tess, Stella, Lucy, and now...Sheldon. Sheldon was named Moustache at the shelter, but I wanted to change it. And I gotta say, the name fits.
The cats are a good distraction from the pain. Wish me luck at the pool tonight.
Oh yeah, I am also meeting up with my friend Kris and maybe her sister and my friend Joleen tonight for dinner. I am looking forward to that.
Posted by TallGal at 3:57 PM
I am a little sore from my water adventure yesterday, but the kind of sore that feels good because I know I did something good for myself. Today my knee felt tired and has given out on me a couple of times, which is not typical. But I don't think it will deter me from going again.
I have done some PVNS research online and some of the findings are pretty depressing...there are some sites where people have given their accounts...some of them are pretty scary. I added some links to my blog today. Most of the links are PVNS related. The Ross Blog is purely for entertainment purposes. There are many more PVNS sites, some of which I have bookmarked, so I can look at them, but don't want to set up links to them because they are the depressing ones, and right now I am taking this thing one day at a time.
I was thinking about my blog today and wondering about adding posts to it so often. One may ask why I focus on my knee every day...the reality is that it has been consuming... Blogging about it is a way for me to get it out of my head a little.
I hope you all had a good day. Mine was pretty good. I had to have a tough conversation with a kid today about hygeine. It is such a hard topic for kids, but I can't let the kid go around not knowing how bad they smell. It was bad.
Anyway... check out some of the links if you want to learn more about PVNS, but beware of some of the gross pictures!
Posted by TallGal at 6:26 PM
I survived!!! I swam... well...kept myself from drowning for about 45 minutes...my goal was 30 minutes, so all is well. Hopefully I don't pay for it tomorrow... I am a little worried about that. But, maybe I will be okay. HUGE THANKS to Sheila and her husband Jim for joining me in the pool!
Got some emails from some blog viewers...thanks for checking it out... a special thanks to "Rico." (A friend who prefers to use his alternate ego!)
Posted by TallGal at 9:28 PM
Anyway... I am preparing for my July surgery. I know that I can't lose all the weight I have regained by the time I go in for surgery, but...I can do what I can in the meantime. Today was day two of eating well and taking better care of myself. When I lost weight before I had done it by following Dr. Phil's program. I have to say that it worked well for me and while I was on it, I felt amazing. I was able to become more and more active and lost more and more weight. Once my knee started hurting me I strayed from the program. Working out was hard and one day away from the gym turned into two which turned into a few...etc. I had gone to physial therapy and my symptoms increased which resulted in more time away from the gym and working out.... So, it has been a long time since I have worked out. For me, not working out means I don't eat well. Not eating well and not working out has not been helpful! (Unless the help I was after was re-gaining the weight!)
After all this I was feeling pretty crappy! It has been a long, hard road.
Ok... enough with the Debby Downer talk. Now that I know I have a date for surgery...and hope of feeling better, I want to get as healthy as I can before surgery. So, I am going to eat healthy and I am going to try to be active...to the best of my physical ability. My friend Sheila and I are going to go swimming tonight at a local pool. My goal is to tread water for 30 minutes. This may not seem like a lot, but remember, I have not been active in about two years.
I will let you all know how it goes...
Posted by TallGal at 6:08 PM
Hello Cyberworld! I am excited to start my blog.
I have recently been diagnosed with PVNS (pigmented villonodular synovitis),a rare condition, and decided that I would blog about it. The blog will allow my friends and family to follow my journey and maybe offer help to others that are being diagnosed. I hope the blog isn't completely about PVNS, but about me and how I get through this. (Though it would be interesting to hear from other PVNS patients!)
For those who don't know, PVNS is a rare condition that means that the lining of a joint, in my case my knee, becomes diseased and basically becomes a tumor, non-cancerous. The tumor grows and impacts a lot of things. Once diagnosed patients have surgery or sometimes surgeries to remove the tumor.
So far, my journey with PVNS has been going on for about two and a half years. I started having symptoms after I had lost a significant amount of weight. I was working out regularly at the gym and was in the best shape of my life. Over the course of this journey my activity level has been decreasing. My knee started swelling after I worked out and sometimes I got a sharp pain in my knee if I stepped on it wrong. It would bother me for a week or two and then I would get back to the gym and work out for a few days and it would flare up again.
I went to my dr. and was diagnosed with patella-femoral syndrome. (From the reading I have done patella femoral syndrome is one of the more common misdiagnoses.) I was sent to physical therapy for a while and the pain got worse. The physical therapists felt that they couldn't help me beyond giving me the exercises they had shown me. I kept trying to go back to the gym and incorporating my PT into my routine. My knee continued to have flare ups and I finally got a referral to go see an orthopedist, Oct. 2006.
He suspected a tear in the cartilage and sent me for an MRI. He read the MRI as inconclusive, while noticing what appeared to be blood pooling in my knee with no apparent cause. He still suspected a tear and following insurance protocols took the next step of giving me a cortizone injection. It did not help. I continued suffering with knee pain and was prescribed some pain killers. Some days my knee was so swollen that I could not bend it. It was excrutiating to walk around and daily tasks became more and more difficult.
In February of 2007 my doctor decided to send me for another MRI to see if the pictures would show more clearly what was going on. (The MRIs were not pleasant because of having to keep my knee in the same position for so long...OUCHIE!)
The second MRI offered no more information other than the blood was still pooling. At this point my doctor said that there was a small possibility that I had PVNS. (Between 1 and 5 people in a million have this condition.) However, he felt that it was very unlikely. Since the pain was still part of my daily life my doctor decided to do an exploratory surgery to see if he could find a cartilage tear and to take a biopsy of the lining of my knee.
I had surgery March 27, 2007. My doc found what he thought was scar tissue in my knee, perhaps from my days as an athlete, cleaned it up and took a piece of tissue from my knee to have biopsied.
The pathology report from the biopsy indicated PVNS. To be sure of what was going on my dr. wanted me to go to a rheumatologist. I went. They shoved a HUGE needle into my knee and withdrew a lot of fluid to use for tests. They ruled out a lot of things including Lyme disease, arthritis, and immuno difficiency conditions. While they ruled out a lot of things they could not conclusively tell me whether or not PVNS was my final diagnosis.
So my journey continued and I was referred to a doctor in Boston. This doctor is an expert on PVNS. I saw this doctor on Friday June 1st, 2007 and have been diagnosed, officially with PVNS. I will have a major surgery in July and the road to recovery will not be easy.
Thankfully I had two of the most amazing people in the world with me, two of my best friends. One of them came into the appointment with me for moral support. The appt. went well and I got a lot of my questions answered.
After leaving his office my friend and I got in the elevator and got ready to leave the hospital and I had to sit down. I broke down...crying. So much happened in that appointment and I felt so many things. I was surprised to hear that I will have two major incisions for the surgery, one in the front and another in the back. The amount of time and intensity of recovery is a little overwhelming. But I think that the thing that hit me hardest was a feeling of relief...
I was relieved that I have a diagnosis...I felt validated... knowing that this is something real...that it is not something that has been in my head. Don't get me wrong, the pain in my knee has been very very real, but after two and a half years of doctors not being able to tell me what was wrong I began wondering if maybe I was a little crazy.
So... I am not crazy...at least as far as my knee goes anyway. :-)
It has been a LONG road so far and I know the road ahead will also be hard. But I look forward to feeling better. Honestly, I don't remember what it feels like to feel good, physically.
Posted by TallGal at 7:15 PM