If this is 40...
Going out tonight was a great way to finish my Christmas adventure... I got to go to NYC, got to spend time with Sis and the boys... and got some friend time... I am a lucky girl!
This blog began as a way for me to record my journey with PVNS, its struggles as well as many moments of success.The posts have slowly been moving away from PVNS as has my life, but PVNS(pigmented villonodular synovitis) is still a part of my life....I hope others can read my experiences and feel less isolated. My surgery was July 17th 2007, and the posts after that date include pics of the incisions/scars. Best of luck to other PVNS patients/survivors!
Posted by TallGal at 10:45 PM 0 comments
It was a great week! I feel more like Christmas than I have in a long time... but not sure it has anything to do with the calendar... I had my hospital meeting Monday and afterwards felt like a huge weight was lifted...Got the title to my truck, yup she's mine all mine! (Thanks Santa!)... I met my future husband... (Or at least the most qualified candidate I have met in a LONG time!) Had dinner last night with a couple of great friends, and today, got to have breakfast with Debbie! THAT was the whip cream on the Sundae! (I don't like Cherries to the whip cream is the top of the top!) Tonight I took myself to my local watering hole for dinner and decided to pay for dinner for two people sitting opposite from me at the bar, both there solo... I watched them and eventually they struck up a conversation... I told the bartender to please put their bills on mine and tell them their bill was paid for by Santa and Merry Christmas... He looked at me and said why? I said... because ... They were pretty happy when he told them... Fun!!! Tomorrow I head out to see Sis and the boys! I cannot wait! I am also gonna swing through NYC for a night and see a play...
I will miss seeing Dad, Betty, and Jacey for Christmas!
But... I am feeling pretty grateful and hopeful... Merry Christmas to all!
Posted by TallGal at 8:30 PM 0 comments
This afternoon I met with some of the "Top Dogs" at the hospital where I had my colonoscopy this fall... I took a friend with me because having a second set of ears, in my opinion, is ALWAYS a good idea. Besides the two of us, there were 5 other people there... One woman who acted as the facilitator, a woman in charge of the nurses at the hospital, a woman in charge of the gastroenterology office and the endoscopy center at the hospital, the director of patient relations, and a man who played some role in the sedation department.
They thanked me for coming in and raising my concerns... and asked me to kick off the meeting by telling them my top concerns. I told them that I was unsure, in coming to this meeting, whether they would want to lead or if they would ask me to lead. I told them that given my experience my trust in them, their organization, was pretty low and I was not confident that the people sitting around the table had actually read my letter, that perhaps some of them were their to fill chairs in an attempt to appease me. I said given that, I would prefer that they start the meeting, that each of them share with the group, what, from my letter stood out to them, to say which part of my experience they want to improve upon for other patients.
They honored that request. The first woman to speak was from the gastroenterology office. She said she was struck by my perception of staff dismissing my anxiety, that I felt like nobody reviewed my medical records ahead of time. She wanted to assure me that everyone reviewed my medical history. The next woman, head of the nurses, said she was struck by how dismissed I felt when I tried to tell people I had anxiety and said that repeatedly asking patients about whether or not they are on medication is part of their intake process to make sure they know how to treat their patients and not meant to stigmatize people or stereotype them.
I interrupted and asked which it was... if people working with me had thoroughly read my medical history or if nurses needed to ask me questions to obtain the information that was already listed. I said that my medical record indicated the only medication I take is a daily asthma inhaler. So if the nurses were familiar with my medical records, they would know that when I told them I had anxiety about the procedure, they wouldn't have to ask about whether or not I was one of 'those people' who take anxiety medication... because they would know there was no history of anxiety listed and no medications listed. I said they can't have it both ways... they tried to backtrack, but realized I was right.
The first woman said she was also struck that I had said nobody had explained to me why my procedure was moved from their office to the hospital. She said she had a hard time believing that was actually the case. The reason, which I found out AFTER my colonoscopy, after I had called their office multiple times to get the answer, was because of my weight. Patients over a certain weight have the procedure done at the hospital.
I smiled a little... even though she basically had called me a liar... and said to her, "Let me ask you this...we are here because I wrote a 9 page letter to you detailing my experience. In that letter I detail my efforts to advocate for my needs, and I detail my concerns. Do you really believe that if that information had been shared with me that I would not have had many DETAILED questions about why I would need to be at the hospital, about what risks would be different for me, about whether or not the procedure is any different, and about how that would change the sedation which was my huge concern?" She sat back and didn't say anything else.
The facilitator, in trying to direct the conversation, said that as a hospital they have to be careful. That some patients schedule elective surgery so that they can get medications which is why they ask so many questions. I stopped her and said I did not see the relevance of that statement, because if what they had already said was true, that they had become very familiar with my medical record, they would know that I was not THAT patient. She acquiesced and apologized for a poor example. At that point the head of the gastro office said that part of the problem with what happened is that I am a VERY healthy woman. That because I do not have other health issues, I was sent down one patient path which was the more conservative approach, but had they known I was a patient who had so much anxiety about the procedure they would have used different sedation medication. I said to her that I wanted her to clarify that... I told her that I had told EVERY person with whom I spoke about my anxiety about this procedure. I told her that I had told my primary care doctor, had told the intake nurse at her practice, had told the nurses and doctors who were involved with my procedure that day... and asked what else I should have done to indicate I was anxious. She said I needed to ask that it be documented in my record and asked if she could update my medical record so that the next time I have this procedure they will know to use propofol instead of whatever they used. I told her that it was ridiculous to have to ask that my anxiety be noted in my record, that one assumes the nurses doing the intake call for preregistration AND the nurses prepping me for the procedure itself would note or at least acknowledge that fear. I also said that she could note in my chart to use different medication next time, but that I will likely ask that record to be sent elsewhere as it would be highly unlikely that I would do my next colonoscopy with them. They hoped I would. I also said that since she mentioned propofol, that AFTER the procedure I was asked by a nurse in her practice why I had not asked for propofol. They all reacted to that and agreed with me when I said that as a patient who has no history with sedatives there would be no way for me to know to request a specific drug, let alone know that a request as such would be granted.
The head of the nurses said she felt badly that the nurse had not been more helpful in getting a hospital gown that fit. And I said, that if what they had been telling me in this meeting was true, that people had reviewed my medical record and that they work together, and that they had clearly communicated that I was having my colonoscopy at the hospital because I was too fat to have it done at their office, that they should have anticipated that a one size fits all gown does not. I said that talking to people about their size/weight is something they need to do. I asked them if they thought I, or other large people, wake up in the morning, look in the mirror and say, "HOLY SHIT I'm 6'6!! How the hell did that happen, last night I was 5'2"?" I said that people who are outside the average range are well aware of it... and I said that something THAT simple, getting a hospital gown that was appropriate without any commentary, would make a difference.
I am not sure exactly where from there the conversation went, but we got to a place where we talked about me waking up in the middle of the procedure. Oh... I think we got there because I asked them how they determine what level of sedation is 'comfortable' for a patient, especially a patient to whom they have not listened. And...Much to my chagrin... I got emotional. I tried hard not to, but I did... I said to them... You had a patient in front of you whose number one fear is dying of cancer, for whom, given her family history it is not if she gets cancer it is when, and what kind. I said that I was so terrified of being diagnosed with cancer, and that I had articulated to the sedation nurse that my biggest fear during the procedure was that I would wake up and hear them find something... and I said that was EXACTLY what happened. That I woke up and heard the doctor say he had found a polyp and I was terrified. I told them that despite having been that open, clear, and vulnerable with the staff in the room that day, after again saying I did not want to see or hear anything, their response was to tell me I could watch the procedure on the tv that was in front of me...and when I repeated again that I did not want to see or hear anything, they suggested I close my eyes. I think I saw two of the women tear up a little when I teared up, and they did apologize for that happening.
I asked why I woke up during and they said that medications effect people differently. They said they had given me the maximum amount they could, but can now note in my record to give me more because I react differently to that medication. They also said the medication they had given me is supposed to have amnesia effects on people, but that on some it doesn't.... case in point.
I talked about humor, its use, and its timing. I said that I appreciate people trying to use humor in creating a rapport with their patients, but when a patient is upset, anxious, and sharing her family history with you, THAT is NOT the time for staff to say to each other, "Did she just say her Dad had ovarian cancer? That's just not possible.."
I also talked with them about how their procedures and protocols are part of their routine, but for patients it is anything but.... they acknowledged that they need to do better with that. I said that for them it is a job, for the patient it can be life or death. I told them that this experience does not define me, but not addressing it would... I said that I could not have not let this go without addressing it. I said that I had many concerns following my bad experience in how it was handled. The woman with whom I had spoken was at the meeting today and she denied some of my accusations, but I looked her in the eye and told her we were both on the phone during those conversations and we both know what was said and we both know which one of us was reporting accurately. She also denied trying to sweep things under the rug and trying to get it over... and I told her if that is the case she needs some coaching on how to communicate, how to convey her intended tone. Her 'take away' from this experience was that at the beginning of this...I had clearly said that I was going to write a letter to share my experience and she said that she kept trying to push the process because she felt it was better to talk about the experience close to when it happened so that it would be fresh in people's minds... but said that she did not listen to what I was saying which was that I needed time to write a letter that writing a letter was my process, what I needed to do to get beyond the experience.
I told them that the letter was my therapy. That having written about my experience was something I needed to do. I said that I came into the meeting wondering if they were coming into the meeting with the mindset of having to deal with a dramatic patient, but that in the end their opinion of me didn't really matter. I said that I wanted to know what were their next steps.
With my permission, they said... they would like to take this experience back to their staffs and use it for training purposes. I of course gave my permission and said to them, that at the heart of who I am, I am an educator, and if I can be of help, if they want a live person to share an experience I was willing to do that... to talk to their staff...to be their visual... I doubt they will, but maybe they will surprise me...
I said perhaps my biggest concern was the umbrella of self advocacy. I said that their hospital has a lot of PR out there about encouraging patients to advocate for themselves... but that what they say they value and what they value are incongruent. I said that they need to remember that patients are people.... and that with that comes emotional elements... sometimes triggers... and that they need to take time to listen to their patients, not rush through the procedures. Oh... the other part of this, the self advocacy... one of the women said that she truly hoped that this experience does not prevent me from doing future screenings because with my family history, despite being so healthy now, I needed to keep getting checked. I told her I was grateful for my primary care doctor who will make sure I do the screenings... but I appreciated her comment...
There was a lot more, but... this is the gist... oh.. at the end they asked if I had more questions or if i needed anything from them at this time... I said I would like a written letter from them. I said ideally it would be a letter of apology, but that I understood the position they would be in putting that in writing because an apology admits guilt of wrongdoing.. but that a letter of acknowledgement, of my negative experience, along with what steps they were going to take next given the information they learned from me and their impressions of my experience... and they said they may be able to do that. May be able...
They offered contact info in case I wanted to reach out to someone again... and I said that brough up another point for me... that their website is not user friendly. I said their website is strictly used to toot their own horns... that they praise themselves all over the place on that website, with articles about their new building, with quotes from satisfied patients, with their quotes about guaranteed patient care, blah blah blah... but that trying to find out where to find information on filing a complaint or figuring out who to contact was ridiculous and added infuriating for an unsatisfied customer...
Overall I feel like I can put this behind me... I doubt I will go to the same place again for this procedure and I will be asking a lot more questions before my next procedure...
Now I can look forward to vacation and not feel this is hanging over my head...
Final thought... get the screenings... despite the bad experience I had... in the end I know I do not currently have colon cancer... and now will go every 5 years to be checked... just in case... and I will go... and hope everyone reading this gets checked out... for colon cancer or other cancers... do it!
Posted by TallGal at 9:48 PM 0 comments
One of my kids.. one of my regulars... came into my office the other day to talk to me about his 'credits.'... for graduation... when he asked me if he has enough credits or will have enough to graduate I humored him... it is a conversation he and I have had, multiple times... and he knows he is fine... I knew there was something else on his mind... this is a kid I know pretty well... (recently he had missed a few days of school and when I reached out to his mom she said she hadn't seen him but she thought he was staying with his girlfriend... He and I have talked about his relationship status and I have reminded him to use protection in his relationship recreational activities...including him telling me that he didn't think he could get stds from white chicks!!!?? Oh my..... I told him that stds do not discriminate and that he needed to be safe... so when he had disappeared to be with his girlfriend for a few days I knew I wanted to meet with him when he returned... and I bought him a present... when he smirked at me when I asked where he had been I told him that little grin of his reminded me that I had bought something for him... he looked confused and asked what I would buy for him... I said it was a gift...not for him directly... and handed him a bag... he pulled out the baby bibs that said 'I Love My Daddy'... his face was priceless and he said he didn't need those... I told him that if he was off doing whatever he was doing instead of being at school he was going to make a baby that needs those bibs... he got my point... so.. he and I have spent a lot of time together... -for loyal blog readers, this is the kid who went on his first ever camping trip last year and was afraid of bears...) so... after I again assured him he was okay as far as credits go... I asked what else was on his mind... he paused and asked if I had seen the news... I told him I had and asked if there was a specific part of the news he was asking about... 'that stuff in NY...' he said... I asked him if he meant the protests and he said yes. I told him I had watched a lot of it on CNN and that I was proud that the protesters in Grand Central Station and those marching seemed to be doing so in a peaceful way... he said he was too... and paused... for a while... then he asked if I thought something like that could happen here, in Maine... and I asked if he meant the protests, knowing he didn't... he shook his head, looked at the floor and said,"Nah.... not the protests... I mean... the cops... you think cops here could just get away with killin' a black person?" And I paused... and his gaze slowly went from the floor and met my eyes... I sighed and said... "I wish I could guarantee you that it would never happen here... but the truth is, it could." We talked for quite a while and he shared that he thinks that cops can get away with anything... that all cops would need to do is to agree on a story and their word will be believed over anybody else's word. He said that his mom has talked to him about how to interact with cops...that as a young black male his mom has told him he needs to make sure he learns to look people in the eye, speak well, be respectful, and to never talk out against a cop, never against a cop... he continued... said that cops ask black men to get out their license so that when the man reaches for his wallet the cops have an excuse to shoot and can say the man was reaching for a weapon... and said that he gets nervous and is more nervous than ever when he gets off the public bus after his job and walks home... he said he often sees police driving past him and he asked me what he should do if they ever stop him. That's a hard question... I would hope that if he was walking home he wouldn't get stopped by the police... but if he did get stopped I would hope that the police officer would approach him in a respectful way and tell him a reason for them stopping him... Knowing him, I adore him, but he can be defensive at times and his body language, mannerisms, and speech patterns could be interpreted... or maybe profiled is a better word... as a thug.. and he is a person who so deeply believes that in order to give respect to people they need to give it to him... Knowing what to tell him in that moment was hard... a few weeks ago maybe I would have said put your hands up.. but that may now be perceived by police as disrespectful or patronizing... So I asked him what he would do if I was driving by him and stopped... he said he would come over and talk to me... I said that maybe he should look at it like that... that if a cop stops him, it is just someone who wants to talk to him... I said he should stop, turn and face the cops and say hello... answer their questions politely and cooperate with them... I said that he and I should sit and talk about his fears with our school resource officer... he is hesitant to do so, but I will get him to... he has a good rapport with our school resource officer... and I think it will help him...
I told him to cooperate with the police.... and I wonder if his cooperation matters... Kids in my school feel unsafe because of the recent grand jury decisions... I have not read the official documents from the cases... but what I know is that things have changed... police are supposed to be safe... what if they aren't? The attention about these cases has focused on race... how could they not? Do I believe there is some racism associated with the cases... yes. Do I believe it goes beyond race? I do. How can unarmed people be killed by police officers?
I posted the story about the football players from St. Louis who came out at the start of their game last weekend with their hands up... the gesture the protesters in Ferguson used which has becoming symbolic... I posted it AFTER watching some interviews given by the players who said their decision to enter the football stadium like that was not to disrespect police, but to remind people that there are more things going on in our world, in our country, more important things, than football... I support that.. I think that racism is alive and well in 2014... and we need to have more dialogues about it... at all levels...
I feel good that this student... a black student... came to me.. his white female assistant principal... to have this conversation. I know I don't have the right answers for him or know what it is like for him... a black male... on a daily basis... but... I'm learning more about that...about him, his life, all the time... and I appreciate that gift...
Posted by TallGal at 4:14 PM 0 comments