Friday, February 28, 2014
Today's visit to University Hospital was a winner. The endocrinologist was a kind, delightful professional who was very respectful and caring of my situation. She believes that my report of osteoporosis is more normal than not. Even though I have lost bone mass, she said that my bigger bones were still doing okay, acknowledging that the metal I have with so many of them interferes in good readings. I had been warned by my PCP that the meds for osteoporosis like Focamax are really hard on you and can result in damage to the esophagus and stomach. They also would be in conflict with some of my other meds and would require me to take them after I awaken (ha ha, if you know my sleeping schedule these days you'd get the humor) and that it would be counterproductive for someone planning to have surgery on their spine. She said that although there isn't research to prove this, there are indicators that suggest that osteoporosis medications interfere with bone healing--especially the spine. She told me that even if I were taking them, they would take me off of them before the surgery. The good news is that she things my habits and diet are good indicators that I don't need the meds right now and with strong follow up, she didn't recommend any treatment unless the tests she did today on my thyroid and parathyroid levels indicated trouble. I will know for sure by early next week how those tests turned out. I expect the thyroid test to be low, but within normal limits. I have never had a parathyroid test that I am aware of. That is a hormone that deals with bone density.
I also contacted our union to find out what I might do to sign up for the sick leave bank. I have to have approval from our Human Resources director. I sent him and email and I have an appointment for 3:30 on Tuesday to discuss it. On a related note, this silly replacement computer has been driving me nuts with the slow, non-responsive junk. I emailed the folks in technology and they got my computer yesterday, replaced the hard drive and got it back to me so I could work on my progress reports this weekend. It did come back with several pieces of software a bit squirrely-- I had to upgrade several items and have Microsoft Office loaded on it, but other than that--they did me a tremendously big favor.
I talked to a parent I have been trying to contact for weeks and we made some progress with the conversation--but we also have a complete conference scheduled for Monday. I can include other interested (and helpful) people who will prevent this from being anything but the honest and honorable conversation the child needs for us to have. This is a good thing!
All in all, today has helped to counterbalance some very difficult days this week. I am lucky that it went so well!!
Tuesday, February 25, 2014
I'm sitting here as uncomfortable as I can be--an hour and a half after I took my pain meds and have been thinking about you a lot. I'm not thinking of you very lovingly and I would like to apologize for that. I rarely think of you very lovingly--but I hope that you are aware that everything I do really is out of my love for you.
I have had quite a journey trying to figure you out recently. I think the majority of my issues come back to my father and the severe, early-onset arthritis he shared with me. I have went the route with replacing my knees and my right hip and through a lot of repairs and removal surgeries to handle that arthritis. My back is my big issue and it is part of this story. I remember seeing my dad walking, bent over to his left side when he was in his 30's over back pain. The problems in my back were most likely inheirited and inevitable. The infection in my spine was given to me by a sloppy hospital procedure and neither of us could have seen that coming nor prevented it. That has brought me to this place--where I have had to struggle and search the best medical facilities on this continent to decide what is best for me.
None of these things are the things on my mind. My life is on my mind and the many ways I abused you by horrid eating habits and a lack of activity for so many years. I am trying my best to make up for that and when I started losing weight about ten years ago and when I joined Spark People in May of 2008, I made the commitment to put you first. I have changed the way I eat and there has been no going back. My portion sizes are true portion sizes and I never overeat any more. I am proud of that when I remember myself as a girl clearing the table and eating things that were left because they were there. I eat 5-8 servings of fruits and vegetables every day--without fail. I cannot start my day without fruit and I naturally include produce in everything I eat now. I still have room to improve and am working on the amount of red meats and deli meats that go into me, but it is coming. (I am a work in progress as we speak.)
I am also thinking about activity. I have never been inactive--I have worked multiple jobs the bigger part of my life and I never take the "easy way out" of anything. However, I have learned a few things to add activity to my life. Even though I have constant, nasty pain in my back and I often have to stop and let that pain settle out of me, my pedometer shows that I automatically have over 10,000 steps registered everyday. Who'd have guessed that out of the girl who spent her childhood reading every book in the library and who would go outside purely to read or sew or knit? I also go exercise 6 out of 7 days a week and love the weekends when I can spend unlimited time at the fitness center and do extra "stuff" in the pool. I use carefully selected exercises for you, dear body, and am now back to lap swimming that is easy on you. I joined a water exercise class yesterday that was for YOU--and although there were many things that were hard for me to do, I enjoyed what I was doing.
I don't often think about you in a positive way, body. I know that I say awful things to you and about you when my back is screaming at me. I am sorry for that. I know that my back would be better if I had made the changes I started in 2006 much earlier, but I hope that you give me credit for what I am doing. It is a scary thought to consider what might be going on with you if I hadn't finally figured this out. I know it is easier on you in so many ways having me be 141 pounds lighter--and I am working on this last 25 pounds again. I took time off with the holidays and the issues with my back (shame on me) but I am back in full force with my plan to get them off of you. You deserve that. Also YOU know that my efforts have made an incredible difference. My healthy cholesterol levels go up every time my doctor checks and my bad cholesterol is way in the healthy range. My blood pressure is in a very acceptable range, averaging 116/76 every time it is checked. I do not have high blood sugars any more either. I give you much needed Vitamin D, iron, and calcium daily--and do a great job of getting all of my other nutrients in through my dietary choices.
I want to apologize to you for a lifetime of abuse that it took me until age 51 to straighten it out. However, I know that you know I am doing a great job of caring for you these days. It is possible to change things and make things better, isn't it.
Thank you for all you do and all you have put up with. You gave me an excellent brain that has allowed me to be the teacher I am, helping one child after another gain literacy day after day. I wouldn't be the person I am in heart or mind without your help. I am who I am because of you. Thanks so much--and know that you will be happy with the changes I am working on now (even at my age, lol. 58 doesn't mean that I am unable to learn "new tricks."
PS--I didn't really mean the nasty thing I said when my back was hurting last night--I wanted to sleep. I know you know that sleep is important and I am trying to do better with that too!!
Sunday, February 23, 2014
Those of you who know me and who have followed my blogs know that I have dealt with a great deal of abuse in my lifetime--and much of it has been related to the fact that I have been obese for the majority of my life. Obesity seems to open the door for bullies to target someone and go for them in body, mind, and spirit. In my case, that included my parents and family, the people I went to school with (particularly in elementary and junior high school), strangers, and some work colleagues. Physical disabilities seem to provoke the same responses in mean-spirited bullies as well. I just realized how public this blog is--and I think it is time to change direction. I cannot tell the story that I need to tell here until I resolve it in a very professional way, and for the good of the order, I intend to do exactly that. I was mistreated last week and I do not intend to do as I have done my entire life and roll over for that kind of thing anymore. I am as good as anyone else and I have committed no crimes against anyone or anything--so, I will do what is needed to protect myself now and in the future and I will do what it takes to protect myself, my integrity, and my values.
The big news for the week is that my reading day turned into a smashing success. There were only two or three little wrinkles in the day which is to be expected when you consider that part of the schedule included 37 guest readers and an outside program--and every wrinkle was attached to somebody being late for their scheduled activity--NOT A BIG DEAL. The students had an amazing day and so did the teachers. I took lots of photos (that I cannot share here because of confidentiality and student privacy laws) and I saw an entire building of people on task and having a successful day, reading all day long. Even kids who had been frequenting the office due to lots of misbehavior did well--I only saw one child in the office and that was at lunch, not during learning time. I am collecting evaluations from the staff that I will publish for everyone to see and they are wonderful. It was a great culmination to my work.
Our family night was not as well-attended as I wish it had been. I am not sure exactly why that happened. Our parade of storybook characters only had about ten people in it which is okay, but it made me feel a bit disappointed. The program with the first graders was awesome--the kids used rhythm instruments and performed to the repeated phrase in "Alexander and the Terrible, Horrible, No Good Very Bad Day" by Judith Viorst, one of my favorite authors and children's authors. Her sense of humor is divine. Then, the principal shared the video they made after videotaping from almost every classroom in the building. It wasn't well-received partly because it needed a bit of editing. The principal went out on a limb and let a couple of 5th/6th grade boys do the taping--but she also let them create the video and they focused on the same two classrooms. People were disappointed that it stayed on those rooms and that they didn't get to see their own child or child's class. They put music to the video which masked the actual reading. Anyway, after that, we had the book swap and book fair before our meal of green eggs and ham--they were beautiful and tasty!! We drew names for door prizes from parents who submitted evaluations. The evaluations basically said the same things I mentioned about the video needing more editing/ adult support and a couple of them criticized the fact that they didn't ever receive notification on the purpose of the event. I had written a special note up about that and on Valentine's Day, I was promised that it would be copied and given to the staff to send home with the students. That did not happen. That actually was the beginning of the string of events that I alluded to in the first paragraph.
Anyway, my dream and goals were all met by the day that we had--our students had a successful and productive reading day. They got to see that we, as a staff, value reading enough to give it an entire day. They got to work with at least three teachers that day--theirs, one with a buddy reading classroom of cross-grade students, and one in a "teacher swap" activity in which a different teacher taught a reading event in their room for 30 minutes. That not only gave the students a fresh face to work with and a chance to see that everyone is a reading teacher, it gave the students a new "special" adult in the building that they now "know." Teachers were pretty apprehensive about that activity but on the evaluations I have received so far, it has turned out to be one of the day's big successes. I knew that the day would be one of the best ever for the kids and I have talked to many children who gave it a big "thumb's up" with the request that we do it again "tomorrow." That tells the story. I am glad that I hung in there after all of the years and times I proposed this event and finally got it on the schedule. It was more than even I imagined it could be for the students, and that was the point.
We are now starting our work to meet goals to go to the River Bandits' baseball game on Tuesday, May 6. The kids have a reading goal that is divided over four weeks--one for each "base" and "home plate." They earn a prize when they get to each base and the home plate prize is a ticket to a baseball game along with a ballpark lunch. Every other year, we provide buses for this event and take the entire school--and this is that year. It is a great time and I get to go along to help supervise and take care of details. I counted out all of the information sheets and prizes for all 19 of our classrooms and distributed them before I left work on Friday.
I worked probably an extra hundred hours in the past 2-3 weeks on all of these reading events in addition to my regular work. I even called guest readers while I was in Rochester to schedule people. I put a lot into the special reading events and I am happy to report that it was worth it.
On another topic, I received a letter from the RN that I saw at Mayo in response to the letter I sent. It was defensive and a bit argumentative. He tried to justify what happened and began by saying that I had his name and credentials on my Mayo itinerary and that he introduced himself. The fact is that the itinerary did not mention any names and simply said "surgical consult." He stated enough to let me know that he conferred with the ortho I saw originally and that nobody else was ever brought into my case. He also mentioned that we had a "pleasant and lovely" conversation--hmm, I left in tears. I am wondering what his definition of difficult might be. Anyway, I don't know if I am going any further with my complaints to Mayo or not--my pain doc thinks they should be denied payment for the visit since it wasn't what I expected or asked for and there was no physician involved. I am going to consider today if it is worth anymore of my time. I made a decision now and I excluded this guy and his information because it wasn't valid. I will share with the spine specialist at University Hospital and hopefully, he will contact the specialists at Mayo and let them know how I was kept from them when my needs fall into their specialty area. That might be the way that my story will get to them, and they can prevent this from happening to their potential patients again.
This week is more routine in many ways. I do go to University Hospital on Friday to visit their endocrinology clinic to discuss my osteoporosis. I saw my PCP this week and he wanted to start treatment ASAP. but he decided to defer since I was seeing the specialists and let them make my plan--he wants the report. I think I am back onto a schedule that is about me these days--and I think I need to get focused on me and my health needs and my future. I lost pool time and spark time this past week and am starting over again with most of my streaks and the like. It is time for me to get back to Weight Watchers as well--I would like to finally beat up this remaining twenty pounds before my surgeries. That will put me in my best possible condition for recovery from the standpoint of physical ability and good health. I expect to be blogging again more often and checking in on my friends who motivate me and keep me going.
The good, the bad, and the whatever--I have experienced it all in extremes this past week. I am looking forward to a week of the mundane and the "normal" (whatever that is!)
Tuesday, February 18, 2014
It happened again...We had outrageous weather and even though we were going to school today to make up one of our snow days--they canceled school because of the weather. It was strange because there was nothing happening and then around 10 AM, it was snowing hard--3 inches in less than a half an hour. It just kept coming after that--and we had 6 inches by noon. Then it tapered down with some warming that created slush and ice on top of the snow making life very dangerous if you were out and about. P.U. So, our school district that rarely takes an emergency day--about one every 5 years just took day number 6. It is something else, more like it was when I was a girl (the way I remember it.)
I had a doctor's appointment today--my 6 month check up. He wanted to start me on meds for osteoporosis but decided to let it wait until I see the endocrinologist next week. He also decided to cut back on my Vitamin D because it can result in toxicity. He said I was nowhere near that level, but he didn't want to test it. He talked with me about a number of things and at one point, he said that I "had an amazing attitude given everything I have to deal with." I was surprised to get a complement from the doctor like that, it was nice.
I rewrote the schedules for our reading day--it turns out that the schedule for preps and lunch I used (that I have) is outdated and they changed those around. It's okay because I fixed everything and every class but one has two guest readers, a buddy reading session with another class, and a teacher swap activity along with the assembly to kick off our reading contest and a scheduled book activity with their teacher. It will be a busy and full day for all of the kids!!
I haven't decided on my costume for our reading night yet, but I am bringing home a couple of books tomorrow to check out an idea or two. I thought i might borrow Marissa's costume from the Wizard of Oz but Megan thinks we might be able to make me into Imogene from the book, "Imogene's Antlers." That will be fun. I am loving this reading day--our PE teacher helped to get me a coach and a former minor league ball player to read to the kids. I really wanted some athletes to show the kids that no matter what part of life you choose as an adult, you have to read.
That's about it for now--no big appointments until next week--time to reflect and meditate and of course, getting the reading day to work for all. I'm rescheduling my Thursday appointment with my rheumatologist so that I am available for anything that may occur during our family reading event and meal.
Take care everyone--have a warmer and far less snowy week!!
Sunday, February 09, 2014
I am officially very frustrated--my story is not a fun one. I went to Mayo this week with the intentions of gathering evidence to help me to make one of the most difficult, yet important decisions of my life. I went expecting to gather information that might not agree with what I already understood. I actually wanted a bit of that because it would help me to decide if these dual back-saving surgeries that will put me out of commission for months was what I needed. I came supplied with the names of the docs who specialize in adult deformity of the spine, lordosis and hyper-kyphosis. I also expected to spend a few days in their fibromyalgia clinic to attend a few classes and to learn more about this condition that I am diagnosed with and that seems to give every other doctor the right to blame my issues on fibro and not to look any further.
That's not how it played out...
I had my initial interview and the staff and I agreed that the issues with my back were the large, looming needs that I needed to take care of--so we decided to put my work with the fibromyalgia clinic on hold and focus on my back. I shared the names of the doctors I needed to see with two different people at mayo that day and asked how to make that happen. The main person I was dealing with agreed that they were important to me and that was the end of that. I went to have yet more X-rays of my lumbar spine and then the MRI. On Wednesday, my big appointment was for my surgical consult.
That appointment was not fun. I went to the appointment and told the receptionist the names of the docs that I needed to see. A nurse came to get me just as my husband had left for the bathroom, so I went on my own. She took me to an exam room and a man who I thought was a doctor came in. I again told him part of my story and shared the names of the docs I needed to see. He smiled and went on to go through my pictures. I will spare you most of the details of that event but a couple of them were important. One is that even though I believed I had had an L3-L5 fusion, it turns out that it was L2-L5--and the comment was made to me that I have a "funky anatomy." The other thing is that is clear that I have had a major fracture of my T12 vertebrae. Even I could see it and that is exactly where my spine tips in the wrong direction.
This guy's attitude was that there was absolutely no reason to do any surgery and that all of the other docs are wrong. He told me that the area they want to treat will not relieve my pain. He was loud, overbearing and found ways to get me in tears and to question every person who I have seen for medical care. He worships the first doc I saw and told me that I should just wait for the RF ablation to work--and if it doesn't, I need to "buck it up and bear the pain. There's nothing that can be done for" me. WOW, I left in shock. I talked to my husband and we started going through everything I heard and know and that we knew. We took our son (who came with since his birthday was Tuesday) and went to the Mall of America for a special shopping trip and headed home.
When I got home at 2 in the morning, I was not able to sleep. I went online to my Mayo Clinic chart. That "doctor's" report was already there and it was brief, but the thing that shocked me was that he was not a doctor at all but an RN with additional certification. Now, I have no problem with nurse practitioners, but I requested their top specialists in the area of adult spine deformities. I sure didn't get that and I got someone who wasn't even kind or gentle or thoughtful in this life-threatening decision I have to make, someone who doesn't know me and was singing praises towards me doing nothing and living with this. He called fusion procedures a way to "kill my joints and ruin my body" and told me that I needed to "quit having surgery." Oh boy.
The second thing that got my attention was the report I requested for the endocrinology clinic at University Hospital. I read it and realized that the report I was given over the phone from someone at my OB-GYN's office was wrong back in October. I was told that I had osteoporosis in my left wrist, but not in my hips. This letter clearly said that I have osteoporosis. My hips degeneration percentage was bigger than that in my arm. Wow, could that have a role in my fractured back vertebrae? How about the broken rib I am still recovering from? I am feeling bewildered and certainly let down by medical people.
I had an appointment with my pain doc on Friday. I was pretty time-consuming with what I had to share and he listened to it all. He really hesitated and told me that he didn't want to be disparaging against any medical people that he would be very upset at what had taken place and he encouraged me to write a letter to Mayo, complaining about the entire episode with me not being allowed to see a doc who I had requested multiple times. I am going to write that letter--I won't go see them now though because I don't believe that I will hear anything else. I am sure that if they have a nurse doing these kinds of appointments, it is justifiable in their thinking and my situation falls into how they deal with that. I also guess that this guy is well-versed in how they discuss things, so I would hear the same no matter what. The other thing my pain doc told me is that if it were him, he would disregard everything that was said by someone who seemed so opposed to seeing me as an individual and was able to be overbearing and okay with making me cry. I have decided that that was also good advice.
That means full-steam ahead. I am going to call for my medical records on EKGs and the like from the hospital of most of my surgeries on Monday and I will keep my appointment at University of IA on Wednesday for a pre-surgical work-up. I am starting to wean down on my fentanyl prescription tonight when I change my pain patch. We are going to cut it back from 75 mg this month to 50, next month from 50 to 25 and then I'll be off of it. My pain doc also gave me dual injections in my SI joints because he said that this is not going to be an easy process and he wants to help me through in any way possible. My oral meds are staying the same. I am definitely nervous about this. At the end of the month, I will see the folks at the endocrinology clinic with the true report from my bone scan and they will s=determine if my osteoporosis needs treating. My doc did share with me that there are people who practice medicine and they make mistakes--that is why it is called practicing. Some miustakes, unfortunately happen. However, the thing that went on after my multiple requests at Mayo to see the docs who treat my condition went on deaf ears, that is more than a mistake.
So...here is where I am. A few other things went on in this same pattern-- part of my son's case in court has been thrown out because it turns out that the lawyer we hired and paid dearly for was employed by the city who was responsible for his arrest. He took a lot of money from us and was dishonorable. We saw another attorney on Saturday and we have a lot of things we must do on that, but my son may get a better outcome than originally. It turns out that the original judge has also recused himself.
I won't go into what has been happening at work except I have been told that I am missing too much work. It is understood, but "something has to be done about it." What? I don't know what that is. I don't know anything yet--I am feeling pretty disillusioned about anyone in power really caring about other people. This week, with what has went on in every profession connected to my world, it is hard to think objectively about this. I am really a person who believes in people, so all I can guess is that it was my week to run into the bad ones all at the same time.
I'll keep you updated and am surely interested in your thoughts on all of this. Take care, my friends!
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