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Copyright

All works on this site, unless otherwise noted, are copyrighted to the author Missy H. (aka M. Hull). Please do not use any posts without permission of blog author. You can contact me via email.

Friday, June 1, 2012

Been A While

I realize it has been quite some time since I posted on my blogs so I wanted to post a quick message to let people know that I am okay. I've been struggling with the decreased mobility, increased pain, and depression issues as I've mentioned on my other blog. I am fighting back but not getting very far since my ability to stand or walk has not improved at all. I still can't stand or walk for more than 5 to 7 minutes at a time, which makes doing things rather difficult. I did get a power chair from the Scooter Store (Great people to deal with by the way!) and it has helped me to get around the house easier (moving baskets of laundry and such) but without a ramp attached to the house, I can't get it out of the house. Without the lift attached to the back of our van, I can't take the chair to the store or anything. So until I can figure out how to get a ramp installed or built on my house, and figure out how to pay for the part of the lift my insurance won't cover, the chair isn't going to help with me getting out of the house as much as I want it to.

I haven't been stitching either, hence no pictures of progress. I'm hoping to get some stitching done today. The Sentimental Sampler has been calling to me fairly strongly the last few days.

Anyway, just wanted to pop in and say hello! I hope everyone is doing well!

Wednesday, April 4, 2012

Interesting and Informative Article

This is an older article on copyright violations in the needlework industry (quilting, cross stitch, needlepoint, etc etc.) that has lots of great information. This article was written in (I think) 1999 or 2000. The issues it talks about now are even worse. Many designers have closed up shop, magazines have gone out of business or changed their business focus to stop publishing the magazine due to piracy (most recently The Gift Of Stitching), and local stores are closing. Piracy has reached huge levels within the needlework community and it is hurting the entire industry. Read the article here: http://www.caron-net.com/nov00files/nov00fea.html

Friday, March 23, 2012

Stitchers lose another resource

A magazine that I have greatly enjoyed over the past years, The Gift Of Stitching Magazine, is stopping publication with their May issue. One of their main reasons is internet piracy (copyright violations). It is so very sad that yet another resource for stitchers is being lost due to people who just can't grasp the concept that they are stealing. It frustrates and angers me a great deal.

I've seen how these people defend themselves. They say things like they only use the stolen patterns that they download to discover new designers and then purchase real copies of the charts for designers they like. This might be true for a few of them, but it is NOT true for the majority of them. Far too many people download charts for free and refuse to see that by doing this they are crippling designers' businesses, thus causing them to stop designing as they can't earn a living wage with their designs. For this magazine specifically it has been horrendous to see that within 30 minutes of the new issue becoming available, the file is uploaded on at least 3 different major infringement sites. Then the issues are downloaded hundreds of times within a few days. Then the people who download the files argue that it doesn't hurt the business of the publisher of the magazine (it is a small business that publishes this magazine, not a large publishing company). I don't understand how they can believe that their stealing doesn't effect the publisher when hundreds of downloads do equal hundreds of lost sales to the publisher. If it were true that downloading these illegal copies do not impact designers, then TGOSM would NOT have seen such a loss in sales that just gets worse every quarter. The fact remains that designers who are being infringed upon do see major drops in their income/sales, the more frequently they are infringed the greater the drop in their sales.

These drops in sales would NOT occur if it were true that everyone who downloads a pattern just to "see if it is a good pattern" then goes and actually buys that same pattern. Since designers are seeing drops in sales, some to a point where their designing business is constantly running at a loss (in other words it costs them money to continue to design, rather than breaking even or making a small profit), it is obvious that the theft of their designs is negatively impacting their businesses.

Sadly it is true that human beings will convince themselves of whatever they need to so they can continue their behavior when they know that behavior is wrong. Many of these thieves convince themselves that stealing these designs doesn't hurt the designers and is "ok", in order to feel that it is okay for them to continue to download stolen charts. They deny the harm they are doing.

I truly am saddened that the stitching community is losing yet another great resource due to internet thieves. I loved TGOSM as it introduced me to many designers I had not seen before. It had many interesting ways of finishing stitching beyond the usual framing, pillows, needlebooks etc. It had some wonderful articles. I will treasure all the issues I have.

Kirsten, thank you for all the work you put in to publishing The Gift Of Stitching Magazine. I enjoyed it tremendously!

Sunday, March 18, 2012

Commenting System


On other blogs I have seen comment sections that allow people to post a response to a specific comment. The replies are indented and show up underneath the comment they are responding to. This allows people to have a conversation with each other and receive replies directly linked to their comment. On Rosemary's blog Seeking Equilibrium, I have greatly enjoyed the system she is using for comments on her blog. So I went ahead and followed the link to the website for Intense Debate, the company (I guess it's a company) that provides the program/coding for the comments. I signed up and followed their installation instructions.

I was surprised at how easy it was to install. I then tested it (hence the two comments at the bottom of this post LOL) and it works great! 

I wanted to do this because I can't always sit up for long periods of time and thus am unable to reply via email to all the comments even when I want to. As a result my response emails can go out days (or sometimes weeks) after the original comment was made. I feel bad about that and wanted a better way.

With this program installed on my blogs I can now comment directly to people in a faster yet still personal (to each individual person's comment) way.  When you make a comment on the blog there is an option to "subscribe" to the comments and you will receive an email update about further responses. You can select "all comments", "none" or just "replies". By selecting replies you will be notified when anyone replies directly to your comment. This notification will be helpful in letting you know that someone (either myself or someone else) has posted to you so that you can view the reply and choose whether or not to respond to it. Selecting none is self-explanatory and selecting "all comments" means you will be notified of every comment posted after your own, even if they were not in reply to your statement. 

I hope you enjoy this new system. Thank you again for reading my babblings, I do appreciate it a great deal!

Wednesday, March 14, 2012

Oncologist Visit

I wasn't expecting the oncologist to do much, but boy did they make me nervous! He is a radiation oncologist so he doesn't do much (if anything, I'm not 100% sure though) with patients until they've been diagnoses with cancer ad referred for radiation. I called him because back in 2010 he was such a great help to me. he understood and knew about phyllodes tumors, and was willing to answer all my questions.

So I went to see him on Monday. As I said, I called to find out what I needed to do and the nurse called me back. Anyway, he remembered me and asked if I had the resection done. He had recommended the surgeon go back in and take some more tissue because he didn't agree that they had gotten a wide enough margin. I explained the surgeon refused to do it. He looked a bit angry but hid it fairly well. He then agreed that yes this thing in my back might be a phyllodes but he can't say for sure whether it is or not. I said I understood that but I just wanted to know if I was thinking correctly or if I was just going off half-cocked for nothing.

I understand docs have to be careful what they say to patients, and he was very careful how he worded things. But basically yes it could be a phyllodes, it could also be any number of other things. He said I need to see a neurosurgeon to have it evaluated and that it should be removed and biopsied. So nope I'm not over-reacting, which is nice to know since I am aware that I can do that at time. It is possibly a Phyllodes Tumor, but only way to be sure is biopsy.

Soooooo..time to get a neurosurgeon to see me.

Monday, March 12, 2012

WIPocalypse March Update

Here is a picture of the Anniversary Sampler for DH and I for the March WIPocalypse. I didn't get a whole lot done, but its better than nothing.

more of the right hand border

how it looks overall
This is Sentimental Sampler © Betty Spencer from the US Magazine Cross Stitch Crazy May 2002. Here is a pic of what it should look like when completed. I did change it around just a little to make the words I wanted fit in it.

Saturday, March 10, 2012

Return Call From Oncologist

I put a call in yesterday (Friday) to the oncologist I saw back in 2010 after the biopsy results came back. I wanted to be sure that I had the right information about Phyllodes tumors and that everything that could be done had been done, so I went to see him even though the surgeon told me it wasn't necessary.

So I called his office leaving a detailed message and asking what tests or things I should be asking my GP about when I see him on Wednesday. The oncologist's nurse called me back a couple hours later after discussing my message with the doctor.  They apparently pulled my medical file and looked it over. The doctor is "concerned that it very well could be a recurrence of Phyllodes" and wants to see me "asap", so I was given an appointment for Monday at 11:00AM (central usa time).

The nurse told me some of the things I already knew regarding chances of recurrence, chances it could be another low-level malignant/benign Phyllodes, chances it could be a more malignant tumor (mid-level or highly malignant metastisising) etc. etc. She said that I was doing the right thing by getting it checked out and said with my history it needs to be done.

So I am now a tad more nervous and scared. To have a cancer doctor say he is "concerned" and "wants to see you ASAP" is a little unnerving. Though it is still possible this will turn out to not be a phyllodes, so I am holding on to that and doing what the doctor wants me to do.

I am still very very scared.

Thank you Sara, Christine, Mouse, Daffycat, Terriboog, Jeanne, Anne and Brigitte for your wonderful comments and well wishes. I greatly appreciate them!

Thursday, March 8, 2012

So Scared...another tumor?

If you read my entry for Tuesday (on my pain blog), where I talked about my doctor's appointment on Monday you'll know that when I asked my doctor about the cat scan results he said there was nothing spectacular going on with my spine and that my pelvis/SI joints came back as he expected. Yet again I am glad I do not totally trust my doctors on everything. I trust him to a point, same as he trusts me to a point. But from my experiences I have learned that doctors are very very busy, and as a result miss things, forget past illnesses of their patients, or flat out ignore them.

Yesterday, Wednesday, I received a copy of the cat scan results in the mail as I requested. (which was a pleasant surprise since I was expecting the receptionist to forget her promise to put it in the mail) Reading the report I came across something I hadn't heard of before, intraosseous hemangioma on my first lumbar vertebrae (L1). So I looked it up. Intraosseous means "on or within the bone" and hemangioma means "growth containing endothelial cells and blood vessels". So basically this means I have a growth of some sort (tumor) on my vertebrae at L1. What I read went on to talk about the various tumors an intraosseous hemangioma can turn out to be, many are cancerous (and yes Phyllodes is included) and a few are not.

Now I understand my doctor has hundreds of other patients and as a result it is difficult to remember every little thing their patients have been diagnosed with in the past. But to forget your patient had a rare cancerous tumor removed 18 months ago? Then to not even mention this growth when giving the test results seems wrong to me.

In June of 2010 I had a cancerous tumor called a Phyllodes tumor removed from my right breast. These are very very rare tumors, counting for less than 1% of all breast cancer diagnoses in the USA. When they do recur as a spreading (metastasis) cancer, they most frequently show up on the lungs or the spine. They are not the usual breast cancer in that they are not ductal or lobal, they are a connective tissue tumor. Also they do not spread via the lymphatic system as most breast cancers do, they spread via blood vessels and contain endothelial cells. Endothelial cells are the cells which make up the lining of blood vessels.

I did inform my pain management doctors of this tumor and its removal because it meant I was having surgery. I did inform them of what little is known about these tumors, including that they do not respond to chemo or radiation and the recurrence rates etc. etc..I did not get additional meds for post surgical pain as my regular meds should have covered it, but I still had to inform them I was getting surgery. They were also informed that a benign/low level malignant Phyllodes tumor counts as a cancer diagnosis and if it recurs it can do so as a more malignant tumor and when they do they usually appear on the lungs or the spine.

Taking that into consideration do you think it might have crossed the doctor's mind that a tumor on my spine MIGHT be something he should mention to me and recommend I have it checked out considering the similarities between a hemangioma and a phyllodes tumor and considering I have already had a rare cancerous tumor removed 18 months ago?

I say HELL YES to that question. Instead I had to find out by demanding my own copy of the written report.

So now I am scared.

I am hoping that it is not a recurrent phyllodes tumor that chose to pop up on my spine because that is pretty scary. I know the chances of survival regarding a recurrent and spreading phyllodes, which this would be a metastisis since it is on my spine not the same breast. I know the chances of it being another low level malginant/benign Phyllodes or the more malignant ones. None of it is real encouraging or very good. But the only way to find out is to have it removed and biopsied since you can't tell a phyllodes from a non-cancerous tumor without a biopsy. (They very frequently come up with a false negative for cancer result on needle and core biopsies.) You would think that a doctor would tell their patient, specially one with my history, that an abnormal growth (aka tumor) has appeared on their spine.

I see my primary care doctor to get the ball rolling for a biopsy next Wednesday.

Please please please God, not cancer ok? Or at least, not malignant Phyllodes ok? please? pretty please with sugar on top?

I need prayers and well wishes that this turns out to be nothing, if you wouldn't mind.

Thank you.

PS I did do a little stitching, but haven't gotten a pic for WIPOcalypse and I am sorry. I will try to get it up tomorrow.

Wednesday, February 29, 2012

TUSAL Feb

Here is my jar for February. I haven't' done much stitching so there is only a couple new threads.

Wednesday, February 8, 2012

WIPocalypse February Update

I haven't done much stitching due to having a new person in the house. My eldest niece has moved in, so I've been spending time with her. I have started to teach her to stitch as well and she seems to like it. Hopefully I can get some pics of her piece soon.

For the WIPocalypse here is my update on the Anniversary Sampler. I wanted to make sure I had enough fabric so I went ahead and started the outermost border, as usual I worried for nothing as there is plenty of fabric LOL

Here are the pics:


This is a closer pic of the stitches I added. The light green/blue (502 I believe it is..too lazy to go get pattern to check LOL) is the outermost border. There will be another line of the darker green/blue but it is only 3 more stitches wide, so I am sure I have plenty of room.



I did do a bit more of the blackwork middle border, not a whole lot but some. There will be larger blackwork bits in the empty space as well as specialty stitches in the center of the blackwork flower shape.

Measi of Measi's Musings is running the WIPocalypse. You can see the list of other participants and check out their progress HERE. Thanks Measi!

Monday, January 30, 2012

Valentine's Giveaway!

Barbara from "To Stitch Or Not To Stitch" is hosting a Valentine's Day Giveaway! She is offering a gorgeous sachet that she stitched and finished. It is filled with rice and lavender crystals so it smells wonderful!

Check it out!

Sunday, January 22, 2012

TUSAL

Here is my TUSAL jar for Jan. 23rd. Daffycat from It's Daffycat is running the TUSAL this year.

Saturday, January 21, 2012

Responses to Chronic Pain Video

Susan and Nataly, thank you both for your replies! I appreciate it a great deal :)



Susan said...

Thank you for sharing this info. I live in California, and haven't yet had any difficulty in getting the pain meds I need for my conditions. I hope that your situation in Florida gets better, and I hope that this is not a nationwide trend.

My Reply:
***You are most welcome Susan. I am sorry to hear that you also live with chronic pain but I am glad to hear that you are not having difficulties getting proper treatment for your pain. I can't say for sure whether it is a nationwide trend or not, but I'm guessing it will be considering doctors are being attacked and arrested in many different states,  not just Florida. What has bothered me the most about all this was finding out that some of the studies the FDA and DEA are using as proof for their statement that prescription drug abuse is an epidemic, are not very well done studies nor are they supported by the evidence.


natalyK said...

Missy, I am sorry for how chronic pain management is handled. As a pharmacist, there are many that do drug trafficking and doctor shopping which is why these ridiculous laws have been established. I wish that the proper people could be repremanded instead of the people with legitimate pain.

My reply:
Ohhhh I almost became a pharmacist Nataly! I worked in a retail pharmacy in MA for a while, then in the pharmacy in Children's Hospital in Boston. I LOVED that job so very much! I was accepted to the MA College Of Pharmacy and was supposed to start school that Sept. (1993), but in August I blew a disk in my back. Thanks to a bunch of errors from two doctors (my then PCP and the orthopedist he sent me to..such as not ordering any tests until I literally couldn't move my left leg at all and had lost bladder control) the herniation became a rupture, embedding pieces of the disk in my sciatic nerve root at L4-5, then the disk herniated again, hiding the rupture from the MRI. It was found during surgery to shave off the bulge (Laminectomy). I also had pelvic pain back then, but they were saying it was radiating from my lower back but now my doctors think it was my SI joints since they were not in great shape then either after delivering my daughter at just under 10 pounds with only 1 fontanel that was very small. Anyway, end result was disability and loss of school. My disabilities and injuries got worse over time, to where I am now; bad disks, nerve damage, broken pelvis etc. etc. (Though I do still think the 6 inch screw in my pelvis looks hilarious on x-rays LOL it was hilarious when a doctor saw my x-ray and said to me "I have smaller screws holding my roof on my house", we both laughed)
Anyway...I just wanted to say that I do understand why some of these rules are being put into effect, as a result of drug seekers, doctor shoppers, and addicts. 
I agree with you, I too wish there was a way to reprimand the ones who are breaking the laws without punishing those of us who aren't, especially since the honest patients do outnumber the dishonest ones (depending on which report chronic pain sufferers number between 75 to 114 million). I remember how frustrated the pharmacists I worked with in retail would get when a controlled substance prescription came in because if they accidentally fill one that was not legal they can lose their license, their job, and be prosecuted. Maybe we should stop blaming the pharmacists and the doctors! Their jobs require them to do things based on what they are told. Neither can help it if a good liar comes to them, we (people) don't have the ability to read someone's mind and know they are lying. I never thought it was fair that a pharmacist can get in so much trouble (or even prosecuted) for filling a script if it turned out to be forged or altered and they didn't catch it. It is not always easy to catch and altered or forged script. I don't think its fair that a doctor can be prosecuted for writing a pain medication script to someone who turned out to have lied to obtain it. The doctor can only go by what the patient tells him/her. It just seems like we're punishing the wrong people, the doctors, pharmacists, and chronic pain patients.
Thanks again for your comment Nataly, sorry I rambled with such a long reply. :)

Below is general information, not directed at anyone specific. These are just thoughts that popped into my head while I was typing, so I included them.
I've been told that my medications will never be increased again and I'll just have to live with the higher levels of pain. I've been between a 6 and an 8 minimum every day for months now and it quickly goes to a 10 (where I fall and have passed out) if I stand for more than 3 to 5 minutes. This is different from how my pelvis and back were prior to April 2011. I have new symptoms and higher pain, but I was refused tests to find out what is going on from May 2011 until Jan. 2012 because they were afraid I am "Just making it up for more medication"  (which I had not asked for more medication or a change in dose) despite the fact that in the 9 years I've seen this doctor I have never done anything wrong such as losing a script, getting my meds wet, calling for early refills, failing the urine test, etc. etc. (They've only been requiring urine testing for the past 4 years or so, same with contracts) This despite the fact that it took me 6 years of taking the same dose to reach a point where the dose finally had to be increased. Even my doctor was shocked when he realized how long it had been since my maintenance medication had been adjusted. I'm not seeking to be pain free, I just want to return to being below a 5 more often than not so I can function better. But that is now denied me because of other people's behavior/choices.
I have no problem with using just one pharmacy (Which I always did anyway because I know it is important to have all meds filled by same pharmacy to best catch possible interactions), doing a urine drug test (though I would appreciate if they used the lab result as deciding factor to end/stop treatment rather than the presumptive result which can often be wrong by giving a false positive). I have no problem with my doctor having access to my pharmacy records. But  the idea that a law enforcement official can just access my medical record without a warrant or just cause, just because I'm a pain management patient, is not right. That he/she can just walk into my doctor's office and demand my record and my doctor has to give it to him. Taking my rights away is not the way to stop drug addiction. Honestly, I doubt we can stop drug addiction. People have been using things to get "high" for a very very long time, addiction is not new.

I think it is wrong that chronic pain patients are intimidated into submitting to procedures they do not want and that do not help them under the threat of losing what little pain control they do have. Other patients have a say in their treatment, but chronic pain patients often do not. Last week I underwent an epidural steroid injection, even though they do no good for me and I react to the steroids they use. Steroids are not a good thing in the long term anyway. They can erode/degenerate bone; seems like a bad thing to be injecting into a broken joint and areas of my spine that already have degenerative changes to the bones. When I tried to tell the doctor I didn't want the injection because they just don't help much at all, I was told if I refused then I would not receive any of my medications and would have to find another doctor because only addicts refuse treatment options. All these injections do is put me in a pain crisis for anywhere from 1 to 3 days (depends on where they injected me). What little pain relief they give me depends on where they injected as well, spinal facet joints do nothing, but the one into the SI joint helps a little for about a week, 2 weeks maximum. 
My doctor has sought the guidance of an attorney to find out how to limit his risk of being investigated/arrested. The lawyer advised him to no longer accept any patient who pays cash for pain management, further he recommended that he stop accepting medicaid patients for pain management. Apparently the bias is that medicaid and cash paying patients are mostly addicts or people who sell the medications. As a result my daughter was dropped (after 5+ years with this doctor without any trouble at all) from the practice, as was my neighbor. Both of whom have legitimate reasons for needing pain management.  So now the uninsured and low income medicaid patients are discriminated against and denied proper treatment because the doctor has to cover his butt not just for medical malpractice but from being unjustly prosecuted for drug offenses. 
It's just nuts.

Friday, January 20, 2012

Pain Management Contracts

I try to keep my chronic pain entries on my other blog. However, my focus with this little movie I made is to spread awareness of how chronic pain patients are treated if they are lucky enough to get treated at all. This video is based on my experiences, as well as the experiences of other patients I know in different areas. I live in Florida, where things are getting pretty bad for pain management patients. I think it is important for others to realize how we are treated. Here's the first video of what I hope will be a series.


For more information you can visit the following links:

Regarding Pain Management Contracts and loss of rights: http://www.dailykos.com/story/2011/04/06/963719/-Chronic-Pain-Patients-Lose-Their-Rights

Information on different topics that affect chronic pain patients, including discussion of different studies etc. (Written by doctors): http://pain-topics.org/  and/or   http://updates.pain-topics.org/

For what happened to Richard Paey in Florida. A young man with many medical issues giving him constant pain who was sentenced to 25 years in prison for drug trafficking. The way Florida's laws are written it does not matter if you actually sell your medication or give it away, if you fill a prescription for more than 50 - 70 pills in the bottle, you are drug trafficking and can go to jail for 25 years. This means any chronic pain patient whose prescription totals more than 60 pills in the bottle, is a drug trafficker under Florida's law. To learn more visit here: http://www.november.org/thewall/cases/paey-r/paey-r.html

Sorry this isn't a stitching entry. I did do a little bit on the Sentimental Sampler, but not enough for a new picture.

Monday, January 9, 2012

WIPocalypse

I joined Measi's WIPocalypse (Measi's Musings) to try and get some of my WIPs completed. You can find my WIP list for this challenge HERE. I started with the Sentimental Sampler, a chart from the US Magazine The Cross Stitcher. I didn't get very far, but here are my pics for the first update.

Sentimental Sampler © The Cross Stitcher

Closeup to show colors better

Closeup of area stitched

I had to pull out this area twice before I got it right, so I didn't get far. But I have started!!