PVNS and GCT-TS Research Study

I received this email on May 30, 2013

Dear Sheila,

I am contacting you about an important PVNS and GCT-TS study that may advance research! PVNS and GCT-TS tumors are rare and input from participants with these tumors is very important. 

We are conducting this interview study so that we can learn from you and better understand the symptoms of PVNS or GCT-TS and the impact that these symptoms may have on your life. 

You may be eligible to participate in the study if;

·         You are 18 years of age and older

·         You are able to read and speak English

·         You have or had a PVNS or GCT-TS tumor and this can be clinically confirmed by your physician

The study involves an interview lasting about 60-90 minutes, no treatments are given as part of this study. If you are eligible and participate in this study you will receive $100 for your time.

If you would like more information about the study, please call 866-766-2344 and ask for Kelly McQuarrie or Adam Weinberger.

Please feel free to share this invitation with others that you may know who have PVNS or GCT-TS who may be interested in participating in the study.

Thank you for considering this important research study!

Adam Weinberger

Research Assistant

Outcomes Research

United BioSource Corporation

7101 Wisconsin Avenue, Suite 600

Bethesda, MD 20814

Phone: +1 240 235 2502 ext. 62502

Cell: +1 301 219 8683

Fax:  +1 301 654 9864

Email: adam.weinberger@unitedbiosource.com

www.unitedbiosource.com

At last an answer

Finally I can stop worrying! I got an email on Sunday with the answer to my LTD application. I have been approved!
Yeah~ In the letter they specifically state that they want to assist me in getting back to work and totally forsee me being able to do so. That is fantastic. I am not able to ever go back to what I did previously so it is time to go back to school!


I need to get in touch with my LTD claim manager and discuss education options and see what he says. I was thinking about a career change and getting a M. Ed. for Middle school but that may not be the right direction. I will know more after I chat with my guy. In the mean time my application is filled out and submitted to Antioch Midwest and I need to send in my essay and resume to complete the application process. Completion depends on what I learn from my guy at LTD.

I am very excited about this and mentioned it on Facebook to people in the 2 groups that I am in as well as to my friends and family. I am really frustrated by the responses that I am getting from some of the people in the groups! Many people are supportive but there are a few who's response has made me very sad. Yes it is possible to have a teaching job that is physically demanding. I fully expect teaching small fries to be tough. Special Education would be hard for me to do physically as well. High school students are just evil and I want nothing to do with them. I am thinking about middle school because my 6th grade teacher sucked so badly that I want to go back to be a Great Middle school teacher. Of course I need to revamp my language since I can't say F^@& every other word!

I am 47 and I have no desire to live the rest of my life on disablity but it is almost like they are trying to get me to give up and coast the remainder of my days. NO thanks~ I fully expect to live past 70 and to be active the entire time.

I like working I like to get out of the house and do something. I just can not immagine living another 30+ years being at home every day! Yes I have health problems but why does that mean my life is over and I should become a LTD lifer?

Financially frustrated

Hallelijuah!
I can pay some bills! My 401k money was available to me on Weds and I requested a disbursment and I just got the check in the mail today. Of course the bank wants to put a hold on the check for a few days before they release the funds to me. But it is here and I can now make an effort to get caught up!

I had spent the morning calling everyone that I owe and updating them and getting extensions on the two that were scheduled for disconnection. Luckily they were both very helpful and I got that all set up. These calls take so much time. I think I was on the phone for 3 hours before quitting. 

The worst call was to my Lowes credit card company. The card is under written by GE which had I known that in the beginning I would never have opened a credit account with them in the first place. They outsourse their work to India which is frustrating because it is difficult to understand the person on the other end. All of them have been taught English but the guy I got today had a thick accent and was so frustrating and the phone connection today was terrible. I was trying to be proactive and contact everyone not to set up payment because I did not know when the money was arriving nor did I know how much I would be able to pay. I was calling to simply give them the chance to update my account. The people they hire are not capable of talking off "script".  The guy "Steve" that I was on the phone with today would not revert from script and listen to me. I finally got frustrated and asked to speak to the manager. "Steve" asked why and I told him "because I don't want to talk to you any longer!" I finally got a manager who started again with the "I apologize" I stopped him and said "I don't want your apology, I want you to listen, take notes and update my account not spout your script". Any way he finally said he had updated the account and I thanked him and hung up. I cancelled this account in March and there is nothing in the world that will entice me to have any retail credit cards ever again! Especially ones that are through GE.

I cancelled a bank account at Chase bank when I realized that they were started by JP Morgan Chase who also is the greedy bastard who started General Electric. GE is a horrible company!

On the upside for the day a mere five calendar days since I requested my 401K money I received a check in the mail. Happy dance!!! I stopped making calls and went right to the bank where I discovered that they would not let me take a third of the money in cash and would only let me have $500; this is because they put a 7 day hold on the money. Apparently the manager can override this restriction but she was not in today; I decided to come back tomorrow. Then I got to thinking that maybe I should check out the other local branch to see if they had a manager onsite which they did but he said the same thing that he could give me the $500 but he would have them run it on same day business and not next day and he would not put the 7 day hold on the money. This frees me up to pay my bills! Yay Bless you Mr. Manager!

So now how do I go about wisely using this money that should have been for my eventual retirement but which I will need to live off of for the next bit of time. . . Hum I need a wise financial guru! I will figure this out I will but it would be awesome to have a wizard on my team! Night all!

Status Update: SNAFU

I lost my job on 4/1/13 not because I am a bad employee not because I wanted to leave but because I am physically no longer able to continue working in that field. The boss and the company would have liked for me to be able to return but it was just not in the cards. 

I have been living off of my last 2 pay checks, neither of which were the full amount that I had normally received. I have paid no utilities, mortgage, credit card or medical bills. Since losing my job I have only paid 3 bills. . . COBRA insurance for a month. . . my first car payment and my car insurance. So I am waiting for everything to be shut off ... my internet and cable will be disconnected on May 21st. And I am sure everything else will soon follow.  I can live with out TV and Internet (Panera here I come), I can even survive with out electricity but the idea of living without water or hot shower kills me.

Every day I am getting inundated by calls wanting me to pay up or make arrangements to pay.  These people on the telephone do not understand that I have NO MONEY COMING IN. I keep explaining that I have nothing coming in and I cannot make payment arrangements because I have no idea when I will have money coming in.They called all weekend and finally quit calling around 8 last night and began again at 8 this morning. It is so frustrating. I know I owe them money and I want to work I can't find any thing that I can do within my limitations.

I know that I cannot return to my prior career and it makes me sad. I woke up one day a week ago and almost called and begged to come back to work. But before picking up the phone I did a mental pro/con list and the con's out weigh the benefits of returning to that career. Spending 3-10 hours a day driving and then hauling in 25-50lbs of equipment into each hospital is much too difficult to do with my bad hip.

I thought that I would have gotten unemployment by this time but they rejected my application, they say I am "physically unable to work" even though the doctor filled out the form and stated that I could work within my limitations in a different career. Apparently all they saw was the limitations. I am eligible to apply, but at this point they will most likely deny me again.
 
I also applied for long term disability but have not gotten any response yet. I called the other day to find out if there is anything that I need to do at this point but they were just waiting for Ohio State to send them copies of my medical records. They did say that they will be making a determination by June 7th.

I have money sitting in my 401K but I have to wait 45 days from when New York Life is notified that I am no longer employed to access my money.

I have applied for numerous jobs that I could do, all of which are not things that I have ever done before, but I am sure I could handle them easily. Sadly I keep getting told that my skill set is not compatible with their needs. I love libraries and I know that I could sort and file books, or check people out at the circulation desk. I filled out a general application for the Washington Centerville library and got a lovely rejection letter in the mail. At least they responded, Kaplan University, Robert Half and Kelly Services all replied by email, but of the other 15 or 20 applications I have put in I have gotten no responses.

This is where I think that online applications are not working for those who like me who are looking for work but can no long work in the profession where they were trained. There is something missing when you are not meeting someone face to face and basing the decision for an interview solely on a resume received online. I went to the Job Center to chat with a job counselor and she was very sweet but was focused on getting me back to work as a Biomed and wanted to help me find Biomed jobs.

I had an interview on Wednesday for volunteer position at the hospital which is only 5 minutes away from home. The lady who was interviewing me and I hit it off right away and I walked out the door with my orientation information and schedule and knowing that as soon as I was done with orientation I would start working the reception desk in the Physician Office Building.

The media's effect on Boston's tragedy

Yesterday the Boston Marathon had two bombs explode near the end of the race course. This event caused the death of 3 people and injured over 100 other people. While tragic and scary I believe that the focus of the media on events like this causes more harm than good.

I am in no way suggesting that this event is insignificant. But the constant coverage on all media outlets does the one thing that the bomber wants; it gives them attention for their cause. We are now instantly and incessantly informed about the minute details of the event.  Video and audio of the actual explosion or shooting are shown on almost every television channel. Witnesses are dragged between news outlets to repeat their story thereby increasing the fear factor of the viewers; which is the true goal of the media outlet. Because the more we fear the more frequently we tune in to see what is happening and thereby boost the ratings of the news program.  

The increased fear that the media produces causes panic and stress nationwide; potentially even world wide, and in my mind is counter productive. It makes people believe that we are living in a much more dangerous world than ever before; by perpetuating this story we are caught in their trap.



Our world has been corrupted by evil from the day Cain slew Abel. Evil is always around and a part of our world but it is up to us to determine if we make it the focus of our life. By allowing the media to make it our focus we are forgetting to live in the light of God's love.

Obla dee oble da life goes on

So a lot has happened since I last scribbled here... I had seen the doc on 3/1/13 and he wanted me off of work for an extra 4 weeks to allow my hip flexors to calm down. Sadly neither that nor the prednisone that my family doc put me on to reduce swelling had much of an affect and by 3/23 I knew that there was no way I would make it back to work on 4/1/13...D day as it were. . . the day my STD (short term disability) ran out.

I contacted my boss on Monday 3/25 to let him know the status of my hip and that it was not going to be ready to return on 4/1/13 and he began the proceeding to "involuntarily terminate" me from my job. I hate that term because in my mind being terminated is the equivalent of being fired but in this case I just ran out of STD disability time and I am now eligible to apply for Long Term disability. Arrangements were made for the boss to come out the following Monday and complete the paperwork, collect my inventory and the va.

The day arrived and the boss was stuck in NY at LaGuardia for a long time and I ended up counting the inventory myself and boxing it up. My co-worker Rob came to give me a hand with the packing and even with his help my hip was a mess. We had the van packed and ready by the time the boss arrived and after a quick chat he took possession of all the stuff  and we all went out to dinner for one last time together.

Junk going to the trash

A full van!

Bob (the boss) and Joe (Co-worker)

Rob (the poor guy covering all my accounts)

I am sad and relieved at the same time to see this era end. On one hand it is going to be so much better for my health to not be doing the driving and the lifting and hauling that I have done for the last 13 years. At the same time I am sad because I have so many customers and co-workers who are friends that will no longer be part of my life and that is difficult. I was able to send out an email to the customer's whose addy's I had and to co-workers to let them all know what was happening. I chose NOT to say anything disparaging about the company in either email and everyone thinks I quit on my own. I have enlightened a few but I figure it will make no difference in the end if they know or don't know the truth.

I am trusting and believing that it will all turn out ok and I will find a position that is more suited to my current physical capabilities and will be able to support me with out having to take a large reduction in salary. I have applied for unemployment and am filling out the application for LTD. At present I have NO income and am trying not to freak out over not being able to pay my bills. I contacted everyone to whom I owe money and informed them that I lost my job and will not be making payments until I figure out what money I will be getting. I am not going to get any severance from the company even though I did not quit my job which I think is a crock. I have an appointment tomorrow with an Attorney to discuss what I need to do at this point and find out if I should be receiving something !

I saw my Orthopedic surgeon today and sadly there is not much he can do at this point to help me since I have also lost my insurance. I am still having a lot of pain and he has suggested several things but all of them take a bunch of money to do and with out insurance it is cost prohibitive. So in the meantime I will gradually begin to exercise more and will build up SLOWLY this time rather than trying hard to push myself to get back to work. The office did give me the paperwork to fill out to get HCAP a health care assistance program. Just one more set of papers to fill out.

Such a frustrating day. . . so following this appointment  which mom came along to we stopped at La Chateline and had lunch and then stopped at Youngs Dairy for icecream on the way home. Then I started looking the jobs that are available in the area and I am so frustrated by what is out there .... while doing this I got a call from the guy, who is handling all my customers about an account in Cincinnati and he need some info about the account. I had told him it was ok to call and ask questions but it makes me sad to chat about the customers that I will never see again.

On a positive note I was with my son on 3/23 looking at cars and ended up getting a car because I came to the conclusion I was not going back and I have not owned a car in 13 years. So I came home that day with a 2012 Dodge Avenger I absolutely love it and am very happy I decided to be proactive and get it before I was jobless and unable to get transpo. Now to figure out how to pay for everything.  :-)

What to do, What to do?

In 3 years I will be turning 50! Yikes !! Here is my dilemma; I love the mental challenges my current career provides. I work in an industry where things are constantly changing and I am always learning something new. And I really like that aspect of my job. On the other hand I work on medical equipment and I only got into this field as a stop gap to make it through raising children alone. Now my children are all grown up and I have made it through that phase of life. 

Unfortunately as you can see if you have read any of my prior ramblings I am falling apart. I recently had a body scan because I have systemic joint pain and wanted to get a baseline view of what the heck is happening. The results showed that there is arthritis in all joints that were imaged, somehow my elbows and hands were not in the scan and I also have issues with them so I presume had they been visible the results would be the same.  

So working as a field service rep is a physically demanding job and I am greatly concerned about how much longer I can do this type of work. I am more concerned because my options locally would be to return to a position at a hospital where I would lose quite a bit of money; but the benefit would be that o I would no longer have to travel. At this time I cannot justify losing so much money just to leave traveling. So now what?

At some point I fear (yes fear is my biggest stumbling block here) that I will be forced to change careers and I have NO money saved for a rainy day. I just watched a friend deal with that exact scenario. She had to have an unexpected major surgery and while out from the surgery her position at the hospital was filled and her benefits and pay were eliminated. She is now working again after being off work for 4 months but it has been extremely difficult and she is now facing eviction from her rental home. 

I have been off work since 12/3/12 and I am facing a similar problem if I cannot be back to work by 4/2/13. I had planned on returning on 3/4/13 but the Orthopedic surgeon wanted me to stay home an extra four weeks which puts me returning the day before they would have to terminate me. So my current plan is I will be back come hell or high water on 4/1. 

All the while I keep getting clues from the universe that I need to quit living in fear and make a change. So here is a run down of my recent Universal kicks in the butt...

3/04 The love of my life chose to self terminate.
9/04 I decided to go back to school
6/06 Graduated from Antioch University McGregor with my Bachelors in Humanities. 
8/08 Struck by a car while walking across the street.
11/11 Diagnosed with Pigmented Villonodular Synovitis
11/11 Tore my Labrum.
1/12 Had a Hip Arthroscopy.
4/12 Broke my Pinkie.
7/12 Broke my Ankle.
12/12 Had a Left Total Hip Replacement.
3/13 Healing well but still unable to return to job.

4/3/13 Expected to report for jury duty!!! Yes you read that right two days after I am scheduled to return to work (because I am completely out of Short term disability not because I am back to 100%) I am supposed to report for Jury duty! Seriously???

I would really like to be able to embrace the insistance of the universe and do something different...but I have lots of bills, especially medical bills which I am racking up like crazy this year! I paid over 8 thousand last year out of my pocket on medical bills. These were the expenses that were on top of what my insurance paid.

How do you live a life in the moment embracing and accepting what is coming without fear? I do not want to be stuck with no options and I have been looking this morning at Masters degrees in Acupuncture. I had actually looked into this in 07 when I was seeing an Acupuncturist on a regular basis. And for some reason I decided against doing it. I cannot turn 50 and not have a plan for the remainder of my life. 

My other thought is I love to knit and read and I would love to open a gathering space where people can come to sit and knit and chat and read and have tea and scones! I can visualize how I would set it up. Implementation would be the issue. . . how could I viably do something like this without it becoming just about selling and making money?

So I paused in writing for several hours and went out to lunch with my family and came back home and walked the dogs. 4:15- 6PM on 3/10 is always a rough time for me as Eric passed away  just before 4 and I found him at 4:15 and ws unable to revive him.