Cancer Update III

Annie:

I don’t know about you, but this is one battle I’m glad that I don’t have to ‘fight,’ though I knot if push came to shove, I’d fight and I’d hope I’d win the struggle. Would you?
For those of you who don’t know Loopyloo/Patricia, she has guest posted on my blog, and kept it up and running several years ago when I had a shoulder replacement and couldn’t write. Now, loopyloo is fighting her own battle with cancer and I ask that you pray for her and her doctors and family.
Loopy would ell you that she is a sinner; she is a saint to me; despite chronic illness challenges several off her family members have faced. I ask for your prayers for Loopyloo!

Originally posted on The Christian Gazette:

Still having a lot of diarrhea, fatigue, weakness! 13 days down on radiation, 17 more to go! Will have another round of chemotherapy either on the 14th or the 21st! My body is not absorbing protein and iron, am now having to take a shot of price it every week to replace the protein. Thank you for your prayers, I am so appreciative! God bless you, you are all so awesome! Patricia aka loopyloo

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Lupus Chronicles

Another move? Well, sort of!

I’d love to know how you ‘spent your summer vacation;’ please tell! But wait, summer’s not NEAR over, and, if you’re like Rey and me, you’ve yet to embark: YET.

In a bit over a week, we leave of my doc appointment/and why don’t we make a vacation of it? I get to meet fellow blogger and author, Lois Roeleofs. It’s not often that we bloggers get to meet another blogger, but Lois and I made it happen!

Recently, I made a change in my blogging software-AGAIN and with every change comes another change-or 500! Let me tell you, all this change is good, keep us young??? At this time in their lives, many people are starting a gentle ‘slow-dow.’ I wouldn’t normally be embarking on a new venture as owner of the internet store: http://YourHomeGoods.com

I also wouldn’t normally change the way my blog, which was set up 2 1/2 years ago, is run. But, I AM. Can once more do me a favor and go to my blog@ http://lupuschronicles/com and sign up in the upper right hand corner? I know I’ve asked this before, but would you humor me?

I Skype with another blog contributor and I e-mail another blogger
frequently. Thing is, we have all formed out OWN sort of community!

Thank you so much and enjoy the rest of your summer!!
Annie
http://lupuschronicles.com
http://yourhomegoods.com

How Many Orthopedic Doctors Does It Take Until One Cares About ON(AVN)

Annie:

All of us with lupus, osteonecrosis from lupus- or any other chronic illness have run into the physician who SEEMS to take little interest in our discomfort. Not only is a physician’s perceived lack of interest frustrating (because this makes us think he doesn’t care) but our discomfort isn’t helped.

I said SEEMS, because the physician does care: physicians do care. But because medical school education isn’t loaded with information on the treatment of this rare condition (in this case osteonecrosis), finding a physician who will take innovative approaches to the treatment and management of this rare disorder, is asking that physician to admit “I DON’T KNOW.” That runs contrary to human nature.

This is one person’s attempt to find someone knowledgable about the pain of osteonecrosis and it’s treatment.

Originally posted on Osteonecrosis (Avascular Necrosis):

If you are reading this site you are probably already very familiar with the feeling that no one cares about what’s wrong with you. Being frustrated comes along with the territory when you have a condition/disease that is not well researched or well funded and one that most orthopedic specialists known little to nothing about.

I went to a new orthopedic surgeon, Dr. Brian Feeley, here in San Francisco yesterday who was recommended to me by my GP. As I’ve mentioned before, I can’t have surgery because of where my ON (AVN) is located, but I need someone to order me MRIs so I can track the progression, or hopefully track the continuing regression, of my disease. I met with the doctor’s orthopedic surgeon in training, he was a nice guy, they are usually the nice guys. The surgeon walked in with a smug look on his face and the first…

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“Existing in a World that Feels Like it’s Not Designed for You”

Originally posted at Osteonecrosis.me on November 9, 2012 and reblogged  on Lupus Chronicles 3/28/2013

“I don’t usually write personal posts because I try to focus on making my site a place where ON/AVN sufferers can find information  There is so much more I have to add to my site and I feel like I haven’t achieved as much as I wanted to at this point, but I’ve learned that you can have all the expectations and make all the plans in the world but life might have something all together different planned for you.

Never in a million years would I have imagined that at the age of 35 I would be walking around with a walker. When I see someone else with a walker they are usually twice my age. I lived with my parents for nearly a year, due to the disability caused by my ON/AVN, and coming back to living in a city as a disabled person has been been challenging, often frustrating and sometimes upsetting.

I never knew what it was like to function in this world as someone with a disability and over the last year I have noticed more and more that many things just aren’t designed with disabled people in mind. Disabled bathrooms often aren’t big enough to fit a wheelchair in, not every street corner has a dip over which you can push a wheelchair or walker. Flying is not fun, especially when you are in a wheelchair and have to make a connection. People aren’t as patient as you would expect them to be. Travelling on public transport is amazingly challenging. When I travel to the pool to do my physical therapy people who aren’t disabled sit in the front seats of the bus and don’t move when you come on with a walker and act annoyed when you get in their way. People my age stare at me all the time, I’m not sure they even know they are doing it. I know it’s weird to see someone young, who looks otherwise completely healthy, hobbling by with a walker.

I got sick very soon after moving to San Francisco from New York, but before I started having pain due to my ON/AVN, I had my future planned out. My husband and I wanted to start a family here as I was already 34. I had recently had a miscarriage right before I moved (quite possibly caused by my clotting disorders) and I thought moving here would be a new start. I am now struggling with the fact that I’m not strong enough to carry a baby, not to mention the fact that I have been, and still remain, on pain killers for over a year. A big part of me has accepted what has happened to me, but on a day like today, when I’m not able to run to catch the bus and it drives right by me as I am waving, I feel inadequate. I know I shouldn’t feel that way, but I do.

I have tried really hard to take a deep breath and to remember to appreciate that I am getting better, no matter how slow it takes. Reossification of bone takes years, and no doctor will give me a definite answer when I ask them “when will I be the way I used to be”. I realize I am lucky that I am getting better and I feel blessed everyday.

What I really wish is that everybody would spend a day in someone else’s shoes once in a while. The world would be a kinder more understanding place.”

Annie:

Sometimes, to borrow a line from the movie, “Forrest Gump” “there just don’t seem to be enough rocks.” Like throwing spears at the demons that lupus brings, that all chronic illness brings, this article by a fellow blogger about osteonecrosis to herself to counter the indecencies that chronic illness causes/in this case osteonecrosis, causes.

Originally posted on Osteonecrosis (Avascular Necrosis):

I don’t usually write personal posts because I try to focus on making my site a place where ON/AVN sufferers can find information  There is so much more I have to add to my site and I feel like I haven’t achieved as much as I wanted to at this point, but I’ve learned that you can have all the expectations and make all the plans in the world but life might have something all together different planned for you.

Never in a million years would I have imagined that at the age of 35 I would be walking around with a walker. When I see someone else with a walker they are usually twice my age. I lived with my parents for nearly a year, due to the disability caused by my ON/AVN, and coming back to living in a city as a disabled person has been been challenging, often frustrating and…

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Existing in a World that Feels Like it’s Not Designed for You

Existing in a World that Feels Like it’s Not Designed for You.

Annie:

Chicago teachers make a good $71,000 and they ask for more? To pay for their health bennies? I thought they were in this for the students, just like I was in nursing for my patients WHO NEEDED, WHO RELIED UPON AND NEEDED ME.There is a fine line between complete narcism and altruism with necessary narcism.

Yes, the rent has to get paid, but I also know that $70,000 is more than enough to pay Chicago rent. Heck, I lived nicely on $45,000 as a nurse in Chicago. And when I retire, there’s no such thing as a big fat pension waiting for me. But, the pen for National Nurse’s Week! How could I forget that!

Originally posted on Nice Deb:

Why are They Striking? – Created by Ben Howe for the Heritage Foundation:

Via CNN: The official reasons they’re striking:

Q. What’s the sticking point?

A. Among the major issues, the teachers are negotiating over the length of the school day, objecting to their evaluations being tied to performance and fretting about potential job losses.

Q. How would the length of school days change?

A. Elementary students would gain 75 minutes to create a seven-hour school day. High school students would gain 30 minutes to create a seven-and-a-half-hour school day. Teachers wants additional .money to teach the additional hours.

They are also asking for a hefty 30% pay raise in a city where only 15 percent of fourth graders are proficient in reading, and only 56 percent actually graduate from high school:

Some facts you may not have seen (unless, of course, you’ve been reading the Foundry): the average…

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