As I have mentioned before, I have a wonderful son named Wyatt. He is one bundle of energy and has led me to firmly believe that 4 year olds are made completely out of rubber. His normal state of being is bouncing off the walls. His mind is constantly bouncing around as well, from one topic to the next. He is just a little sponge absorbing everything. At 4, kids are also defining in their mind ideas about boys and girls and what are the differences. Still, I was a little unprepared for his question. "Mommy, why do girls have ports and boys don't?"
Oh my, how very interesting. I suppose I should mention right now that my son doesn't know that I have cancer. I don't believe that he knows what cancer is, and definitely not the impact that it has on a person's life. I would have much rather my son ask me something else, like why don't I have a penis. But we have already covered that one around age 2, thanks to dad the Nurse Practioner. The question floored me because I never thought about how cancer would affect my son's understanding of the world. I have thought about how it would affect him if I died, or if I was lying in bed sick all the time. But I never thought that he would equate parts of cancer as part of my identity as a woman. I can see it in his head. Girls wear skirts, girls wear nail polish and girls have ports. Ugh!
He wasn't quite old enough to understand what was going on when my head was bald. And he often likes to look at pictures of me like that because he thinks it is funny. He has never asked why I was bald before. A couple of his friends have super short shaved hair, so I think he thinks that it is normal. My son does know that I go to the doctor an awful lot. He thinks that it is terrible that they never give me any stickers. Do I choose this moment, while I am blow drying my hair to tell him that I am sick. Really sick. Things are fine for now, but we don't know what will happen in the future?
I paused for a moment, looking into his sweet little face turned up to me waiting patiently for me to answer. I put on my self-assured smile, and tell him that this is a special port and not everyone has one. It just makes it easier when I go to the doctor to get me shot. ( I think that explaining an IV is a bit much at this point). I also point out that anyone could get a port, boys or girls, but you have to need it. I pause. Testing this much with him to see what his response will be.
"Mommy, can I get another Bakugan?" Bounce - and the rubber ball mind is off to another subject.
Thursday, February 24, 2011
Friday, February 11, 2011
A Retraction - of Sorts
While I was rather infuriated with my former employer due to my health insurance being terminated, I do feel the need to retract. At least a bit.
To be fair, my former employer did fix the issue. As well as fixing the issues earlier in the year when my insurance was cancelled 2 different times. The 'fixing' was never quite complete, as I always had to make calls to each type of benefit that I was receiving. But at least they turned me back on the system.
And just to recap. In March 2010, when I went on long term disability, my company accidentally coded me as terminated. That took me until May to get figured out. But it did. Then CIGNA, the third party that handles my employers long term disability claims, decided in October that I didn't qualify for benefits. Not sure how metastatic cancer doesn't qualify, but oh well. Still working on this. But because of this ruling my employer terminated my benefits. They reinstated them, while I am in my Appeal. And then this most recent time - Blue Cross and Blue Shield had a glitch in their system, that cancelled my insurance for the month of December.
So my retraction is that my former company was not directly responsible each time. And they did help me out to get me reinstated each time.
To be fair, my former employer did fix the issue. As well as fixing the issues earlier in the year when my insurance was cancelled 2 different times. The 'fixing' was never quite complete, as I always had to make calls to each type of benefit that I was receiving. But at least they turned me back on the system.
And just to recap. In March 2010, when I went on long term disability, my company accidentally coded me as terminated. That took me until May to get figured out. But it did. Then CIGNA, the third party that handles my employers long term disability claims, decided in October that I didn't qualify for benefits. Not sure how metastatic cancer doesn't qualify, but oh well. Still working on this. But because of this ruling my employer terminated my benefits. They reinstated them, while I am in my Appeal. And then this most recent time - Blue Cross and Blue Shield had a glitch in their system, that cancelled my insurance for the month of December.
So my retraction is that my former company was not directly responsible each time. And they did help me out to get me reinstated each time.
Thursday, February 10, 2011
Great relief for Red Hand Syndrome
Red Hand Syndrome? Yeah, it is crazy dry skin and red hands and feet brought about from chemo. Hands and feet have lots of little capillaries and apparently the chemo drugs can accumulate in these areas. One drug in particular, Xeloda, creates some really red hands and feet. My doctor said that her cancer patients could always spot another Xeloda patient because of their hands.
Treatment using Xeloda has matured a bit. People no longer suffer horribly from this. They have found that lower doses of Xeloda are just as effective as high doses. You have to juggle around with treatment regimens until it is 'Just right". And that means, you start off with a high dose based on your height and weight. Then gradually decrease until the side effects are more tolerable.
When I first started Xeloda my hands and feet looked sunburned. And then I got a sunburn on the rest of my body so it all blended together. Ha, ha. But then as time went on, my hands and feet hurt less until it was something I could live with.
One item that has made it much easier to deal with is Petro-Carbo by JR Watkins. This stuff is unbelievable. And I have tried just about everything. One of the nurses finally gave this to me when I was complaining about just how cracked my hands and feet were. I'm not one to endorse products or anything, I see this more as a public service announcement. As we are in the middle of winter right now, my hands can seriously not take one more handwashing. But the Petro-Carbo Salve helps so much. I normally put it on and then put either socks over my hands, or a pair of gloves. I put it on thick. By putting it on thick, it feels a bit gross on your hands.
I also put this on my feet. I have never had cracked or dry heels, but thanks to Xeloda I do now. This stuff does wonders on them as well. My mother bought me some cute little socks that were gel inside. You were suppose to put lotion on and then put the socks on over top. I use these socks with the Petro-Carbo, and go to sleep. It keeps my feet from drying out.
I do have to warn you, this stuff does have a distinct odor. It isn't horrible. It just sort of smells rustic. Like something your grandparents would use. According to the package it has been around since 1868, so, I suppose that is about right.
If you try this out, let me know what you think!
Treatment using Xeloda has matured a bit. People no longer suffer horribly from this. They have found that lower doses of Xeloda are just as effective as high doses. You have to juggle around with treatment regimens until it is 'Just right". And that means, you start off with a high dose based on your height and weight. Then gradually decrease until the side effects are more tolerable.
When I first started Xeloda my hands and feet looked sunburned. And then I got a sunburn on the rest of my body so it all blended together. Ha, ha. But then as time went on, my hands and feet hurt less until it was something I could live with.
One item that has made it much easier to deal with is Petro-Carbo by JR Watkins. This stuff is unbelievable. And I have tried just about everything. One of the nurses finally gave this to me when I was complaining about just how cracked my hands and feet were. I'm not one to endorse products or anything, I see this more as a public service announcement. As we are in the middle of winter right now, my hands can seriously not take one more handwashing. But the Petro-Carbo Salve helps so much. I normally put it on and then put either socks over my hands, or a pair of gloves. I put it on thick. By putting it on thick, it feels a bit gross on your hands.
I also put this on my feet. I have never had cracked or dry heels, but thanks to Xeloda I do now. This stuff does wonders on them as well. My mother bought me some cute little socks that were gel inside. You were suppose to put lotion on and then put the socks on over top. I use these socks with the Petro-Carbo, and go to sleep. It keeps my feet from drying out.
I do have to warn you, this stuff does have a distinct odor. It isn't horrible. It just sort of smells rustic. Like something your grandparents would use. According to the package it has been around since 1868, so, I suppose that is about right.
If you try this out, let me know what you think!
Tuesday, February 8, 2011
If we are what we eat, what about pesticides?
Organic is now a wonderful household name. Albeit, sometimes an expensive one. Ever since I have been diagnosed with cancer a second time, I have been incredibly careful about what I eat. I will even occasionally have a week that is gluten, dairy and sugar free. Really, there is a TON of food out there that doesn't have this stuff in it, and takes good. How do you think the human race has survived all this time?
Needless to say, when I have one of these weeks, I am eating a LOT more veggies than I normally do. Even on a normal week, I do pretty well at eating my daily recommended dose of fruits and veggies. However, the pesticides in a lot of these foods are terrible for you. If they are bad for the bugs - just guessing that they are bad for us too. Doesn't take a rocket scientist or biologist to figure that one out. Not only do these foods have the pesticides on the outside, but some water laden fruits like grapes, draw them into the fruit itself. So no matter how much you wash - you will be ingesting pesticides.
I'm all about trying to be healthy, and I don't think that my body needs any more nasty stuff inside of it. Chemo is enough. I have 2 great links for you. Both cover which foods are a MUST to purchase organically. And another list, that isn't quite as critical. As I mentioned before, organic tends to be a bit more expensive. You may have heard of the Clean 15 & the Dirty Dozen. Well here are some links to help you out. The first link is to a pdf of a wallet sized card and IPhone App (sorry Android) of the Clean 15 & Dirty Dozen. The other link is a longer list of fruits and vegetables and where they fit in "buy organic" list.
Enjoy!
Wallet List
http://www.foodnews.org/walletguide.php
Long list
http://www.grinningplanet.com/2006/update-2005-05-24/pesticides-in-food.htm
Needless to say, when I have one of these weeks, I am eating a LOT more veggies than I normally do. Even on a normal week, I do pretty well at eating my daily recommended dose of fruits and veggies. However, the pesticides in a lot of these foods are terrible for you. If they are bad for the bugs - just guessing that they are bad for us too. Doesn't take a rocket scientist or biologist to figure that one out. Not only do these foods have the pesticides on the outside, but some water laden fruits like grapes, draw them into the fruit itself. So no matter how much you wash - you will be ingesting pesticides.
I'm all about trying to be healthy, and I don't think that my body needs any more nasty stuff inside of it. Chemo is enough. I have 2 great links for you. Both cover which foods are a MUST to purchase organically. And another list, that isn't quite as critical. As I mentioned before, organic tends to be a bit more expensive. You may have heard of the Clean 15 & the Dirty Dozen. Well here are some links to help you out. The first link is to a pdf of a wallet sized card and IPhone App (sorry Android) of the Clean 15 & Dirty Dozen. The other link is a longer list of fruits and vegetables and where they fit in "buy organic" list.
Enjoy!
Wallet List
http://www.foodnews.org/walletguide.php
Long list
http://www.grinningplanet.com/2006/update-2005-05-24/pesticides-in-food.htm
Monday, February 7, 2011
Disability Blahs
Oh my. This is going to be a bit of venting. I really can't believe that my former employer has screwed things up this badly. My insurance has been cancelled sometime in December. I thought that it was just because of the new year. Changing to 2011, maybe they didn't carry things over. Amusingly enough, I did get new insurance cards. Think I better change my stock options. If they can't get insurance coverage right, the rest is sure to head downhill as well.
It is just lovely that my former employer has terminated my insurance once again without telling me. Really wonderful considering that each treatment that I do is $15,000. And that's every 3 weeks. Maybe there is a reason that I am consistently "accidentally" terminated. Maybe they really do just want to get rid of me. I am an expensive liability. I wonder if there is anything in Obama's bill about that? Not sure I can read that huge tome of health insurance policy, but it would appear that it would be in my benefit.
It's awful to have your insurance pulled out from underneath you. It just makes me want to scream! No wonder people go postal. Benefits are those things that you assume will be there. I did my work while I was at the company. I didn't think that I would use these benefits. Apparently my employer didn't think anyone would either. Otherwise it wouldn't be such a cluster, and my new full time job would not be to monitor them.
Aaaaargh!!!!!
It is just lovely that my former employer has terminated my insurance once again without telling me. Really wonderful considering that each treatment that I do is $15,000. And that's every 3 weeks. Maybe there is a reason that I am consistently "accidentally" terminated. Maybe they really do just want to get rid of me. I am an expensive liability. I wonder if there is anything in Obama's bill about that? Not sure I can read that huge tome of health insurance policy, but it would appear that it would be in my benefit.
It's awful to have your insurance pulled out from underneath you. It just makes me want to scream! No wonder people go postal. Benefits are those things that you assume will be there. I did my work while I was at the company. I didn't think that I would use these benefits. Apparently my employer didn't think anyone would either. Otherwise it wouldn't be such a cluster, and my new full time job would not be to monitor them.
Aaaaargh!!!!!
Friday, February 4, 2011
The fear of pain.
I think that one of the most stressful aspects of living with metastatic cancer is the fear of a return of the cancer. I even hesitate to say "return", because technically it has never left my body. There just aren't enough cancer cells in one part of my body to show up on a CT Scan.
In between CT Scans, I worry and "scan" my body continuously. I pay attention to every single little pain and creak. Lately there have been many pains - most likely due to a car accident from 2008, rather than cancer. But the fear is still there.
Fear is a crazy beast. It is crippling. It can bring you to your knees with worry. Setting off scenarios that run through your brain, detailing little episodes of "what if?". What if this little pain is the cancer? What if this little cough is the cancer? What if this headache is the cancer? I would LOVE to not put any energy towards these thoughts. It doesn't help anything. But it is just hard to turn your brain off.
So right now I have a small pain on my left side. It is probably from trying to wrestle my 4 year old into a cart at Meijer. Note to self - the little guy is getting to big to push around in a grocery cart. But the pain is there, making me worried. As I bend over and pull the dishes out of the dishwasher I feel the pain. It clouds my thoughts as I bathe my son, bending over the tub to wash his hair. It is a fear that grips. A fear that I want to live without.
In between CT Scans, I worry and "scan" my body continuously. I pay attention to every single little pain and creak. Lately there have been many pains - most likely due to a car accident from 2008, rather than cancer. But the fear is still there.
Fear is a crazy beast. It is crippling. It can bring you to your knees with worry. Setting off scenarios that run through your brain, detailing little episodes of "what if?". What if this little pain is the cancer? What if this little cough is the cancer? What if this headache is the cancer? I would LOVE to not put any energy towards these thoughts. It doesn't help anything. But it is just hard to turn your brain off.
So right now I have a small pain on my left side. It is probably from trying to wrestle my 4 year old into a cart at Meijer. Note to self - the little guy is getting to big to push around in a grocery cart. But the pain is there, making me worried. As I bend over and pull the dishes out of the dishwasher I feel the pain. It clouds my thoughts as I bathe my son, bending over the tub to wash his hair. It is a fear that grips. A fear that I want to live without.
Tuesday, February 1, 2011
Insurance - Love it, Hate it
I just have to say, having health insurance is GREAT when it all works out well. I worked really hard at my corporate job and I feel that I earned the benefits due to me. That's part of why you get work the corporate gig - for hopeful idea that you will have good benefits that take care of you if something happens.
My insurance did work out great while I was working. And even through my short term disability, FMLA and then long term disability. However, part way through my long term disability, the third party dealing with my insurance cut me off. Their reasoning was quite odd. My husband and I decided to take a little trip to King's Island with our 3 year old boy. When we got back, I mentioned this to my doctor and the fact that my feet were killing me, (part of the joys of Xeloda side effects). She noted that I had a good day and went to King's Island with my family. The third party handling my insurance, read this in my chart and decided that since I went to King's Island for a day, I must be well enough to return to work.
What?! Yeah, seriously that's what happened.
I guess they missed the part in the chart where I go to IV infusions every 3 weeks. And that I am on chemo every other week and the fact that I have metastatic cancer. And for anyone that has ever gone to King's Island with a 3 year old, knows that you have to plan your day out for some down time. And that your 'day' is not from open to close at King's Island, but more like noon to 5 or so. Honestly, I spent a ton of time lounging in the Pirate Pool in the kiddie area while my husband chased our son around. It was one of my more relaxing days.
But back to the point of insurance. As 3 people at the third party decided that I no longer required long term disability, they alerted my previous employer who promptly terminated my benefits. Awesome. Especially as this was the second time they did this in 2010. And the first time was an accident, while I was still working. I finally got all of the bills figured out from earlier in the year, and then it happens again. And this is where all the problems happen.
When your benefits are cancelled - it is NOT an easy thing to get them all turned back on. One would think that you just need to call your HR Manger, right? No, it takes several calls. First there is your health insurance. Then there are your 401K benefits. You also have the Pharmacy, as well as Disability benefits. Each one takes at least one phone call, usually more.
Then there is the fact that I pay my former company the cost to have me on their insurance. It's one of the benefits of long term disability. I send a check every month with a little coupon that they sent to me. I have been waiting for my new coupons, but they never showed up. I did eventually send in a check with my account number, but who knows. I don't think that it mattered, just got my EOB and I'm not insured. AGAIN. This is the third time.
So, insurance, it's great when it works. But it makes me a freaking wreck when it gets screwed up.
My insurance did work out great while I was working. And even through my short term disability, FMLA and then long term disability. However, part way through my long term disability, the third party dealing with my insurance cut me off. Their reasoning was quite odd. My husband and I decided to take a little trip to King's Island with our 3 year old boy. When we got back, I mentioned this to my doctor and the fact that my feet were killing me, (part of the joys of Xeloda side effects). She noted that I had a good day and went to King's Island with my family. The third party handling my insurance, read this in my chart and decided that since I went to King's Island for a day, I must be well enough to return to work.
What?! Yeah, seriously that's what happened.
I guess they missed the part in the chart where I go to IV infusions every 3 weeks. And that I am on chemo every other week and the fact that I have metastatic cancer. And for anyone that has ever gone to King's Island with a 3 year old, knows that you have to plan your day out for some down time. And that your 'day' is not from open to close at King's Island, but more like noon to 5 or so. Honestly, I spent a ton of time lounging in the Pirate Pool in the kiddie area while my husband chased our son around. It was one of my more relaxing days.
But back to the point of insurance. As 3 people at the third party decided that I no longer required long term disability, they alerted my previous employer who promptly terminated my benefits. Awesome. Especially as this was the second time they did this in 2010. And the first time was an accident, while I was still working. I finally got all of the bills figured out from earlier in the year, and then it happens again. And this is where all the problems happen.
When your benefits are cancelled - it is NOT an easy thing to get them all turned back on. One would think that you just need to call your HR Manger, right? No, it takes several calls. First there is your health insurance. Then there are your 401K benefits. You also have the Pharmacy, as well as Disability benefits. Each one takes at least one phone call, usually more.
Then there is the fact that I pay my former company the cost to have me on their insurance. It's one of the benefits of long term disability. I send a check every month with a little coupon that they sent to me. I have been waiting for my new coupons, but they never showed up. I did eventually send in a check with my account number, but who knows. I don't think that it mattered, just got my EOB and I'm not insured. AGAIN. This is the third time.
So, insurance, it's great when it works. But it makes me a freaking wreck when it gets screwed up.
Monday, January 31, 2011
Avastin - lies and truths
As Cancer is a life and death sort of disease - it brings about a LOT of strong opinions. And now with our country's entry into a new world of healthcare, opinions are running rampant. I am quite saddened that fight against cancer is getting lost in political rhetoric. Mainly I am speaking of the debate on Avastin that is being waged right now. Genentech is appealing the ruling of the FDA to remove Avastin as a protocol for women with breast cancer.
This is where the 'death panel' arguments come in against Obama from the right and the left takes the bait, taking our eyes off of the real issue. It is being argued that Avastin is being pulled simply because of cost. But the REAL argument is - "Is this a good idea for women with breast cancer?"
Regardless of the cost, is this treatment a good treatment for women with breast cancer? In my case, it is. When I started to take the drug I was told that the average time before the cancer started to progress was 10 months. 10 MONTHS!!!!! My son was barely 2 when I was re-diagnosed. I was just hoping to make it to his 3rd birthday. I have been taking Avastin for 2.5 years and it is still working. I hope that it continues to work. I beat out the average time to onset, so I am hoping that I am a "super responder" - someone who continues to respond very well to the treatment.
Not all breast cancer patients respond this well to Avastin. As I mentioned before; 10 months is the average before progression of the cancer. The other measurement is life expectancy. If a woman takes Avastin for metastatic breast cancer she has a 20% chance of living another 5 years. This is the same with a woman with metastatic disease undergoing normal chemotherapy treatment. I have to tell you, I would MUCH rather be on Avastin for 5 years than on anything else. At least I have hair, a decent amount of energy and zero nausea. 5 years of on and off regular chemo treatments sounds horrible to me. But not all breast cancer patients have the ability to take Avastin because it just didn't work for them.
So the arguments at this point should not be, should we keep Avastin for not, it should be, why are some people responding VERY well to this treatment? We know that cancer is different in each person and we are discovering more variables that we can treat. I feel like with each variable that is uncovered it is another step closer to a cure or prevention.
The real argument is not Obama-care or any politics. It is - Does the drug work to treat Breast Cancer? Yes it does, albeit in a very small percentage of the population. Let's find out WHY this is working on some people, and not at all in others. I'd like to make it to my son's wedding.
This is where the 'death panel' arguments come in against Obama from the right and the left takes the bait, taking our eyes off of the real issue. It is being argued that Avastin is being pulled simply because of cost. But the REAL argument is - "Is this a good idea for women with breast cancer?"
Regardless of the cost, is this treatment a good treatment for women with breast cancer? In my case, it is. When I started to take the drug I was told that the average time before the cancer started to progress was 10 months. 10 MONTHS!!!!! My son was barely 2 when I was re-diagnosed. I was just hoping to make it to his 3rd birthday. I have been taking Avastin for 2.5 years and it is still working. I hope that it continues to work. I beat out the average time to onset, so I am hoping that I am a "super responder" - someone who continues to respond very well to the treatment.
Not all breast cancer patients respond this well to Avastin. As I mentioned before; 10 months is the average before progression of the cancer. The other measurement is life expectancy. If a woman takes Avastin for metastatic breast cancer she has a 20% chance of living another 5 years. This is the same with a woman with metastatic disease undergoing normal chemotherapy treatment. I have to tell you, I would MUCH rather be on Avastin for 5 years than on anything else. At least I have hair, a decent amount of energy and zero nausea. 5 years of on and off regular chemo treatments sounds horrible to me. But not all breast cancer patients have the ability to take Avastin because it just didn't work for them.
So the arguments at this point should not be, should we keep Avastin for not, it should be, why are some people responding VERY well to this treatment? We know that cancer is different in each person and we are discovering more variables that we can treat. I feel like with each variable that is uncovered it is another step closer to a cure or prevention.
The real argument is not Obama-care or any politics. It is - Does the drug work to treat Breast Cancer? Yes it does, albeit in a very small percentage of the population. Let's find out WHY this is working on some people, and not at all in others. I'd like to make it to my son's wedding.
Thursday, January 20, 2011
Disability Continues....
I actually started to create an excel document to track my progress with all of the different companies that I was contacting. After a while, I also added comments like "does not look legit", "not a current number", and "broken links-can't contact". I think that this might be an area where the government could save some money. What a mess...
I did get a call back from ONE company. I had a very enlightening conversation with a lovely lady named Pam. According to her, "Maximus is working on the problem [of the legitimate companies]." I hope so! After the conversation with her, I am going to set up a meeting with Social Security. I read all the documentation on the Maximus website - even took the mini tests during the training and got a 100%. Even so, Pam and I have different comprehension of how the Ticket to Work program works. Since this is her job. I am guessing that she is right. But I think I need to talk to Social Security as they are the one that holds the contract with Maximus. And ultimately, I personally answer to Social Security.
Just a preview for the next couple of posts - I'll be chatting about nutrition, and Avastin.
I did get a call back from ONE company. I had a very enlightening conversation with a lovely lady named Pam. According to her, "Maximus is working on the problem [of the legitimate companies]." I hope so! After the conversation with her, I am going to set up a meeting with Social Security. I read all the documentation on the Maximus website - even took the mini tests during the training and got a 100%. Even so, Pam and I have different comprehension of how the Ticket to Work program works. Since this is her job. I am guessing that she is right. But I think I need to talk to Social Security as they are the one that holds the contract with Maximus. And ultimately, I personally answer to Social Security.
Just a preview for the next couple of posts - I'll be chatting about nutrition, and Avastin.
Wednesday, January 12, 2011
A Foray into the world of Disability - Ticket to Work
In March it became abundantly clear that working was not option for me and I would have to go on long term disability. I'll write about that decision making process another time. It has been almost a year since I have been on disability. I finally qualified for Social Security back in October. Along with qualifying for Social Security I also qualified for the "Ticket to Work" program. They literally sent me a big postcard Ticket. So Willy Wonka. Four months later, I have finally decided to take a look into this program. This is a little long, but bear with me.
Maybe I am incredibly judgmental, or maybe I just have high expectations. But I have not been impressed so far in my short journey figuring out the Ticket to Work program.
How many steps should this take, and how many different people should I talk to for this to be effective? The first thing I did was flip through the pamphlet that came with my Ticket. It told me to go to the website for valuable information. I also notice that there was a company "MAXIMUS, Inc." that I need to call to get started. Interesting.... a third party handles all of this? Why don't I have any information from them being sent to me then?
Let's go back to my two options at this point - go to the website for Social Security or call Maximus. I did check the website and got some more information. I decided to Google Maximus before calling them. (I like to know exactly to whom I am talking). I found a website for them, apparently Maximus is aptly named. It appears to be rather large in size, handling a ton of different services for the government. I looked at more info on their website going over the Ticket to Work program. They don't have much info online geared toward the beneficiaries like me. Their barebones, ancient looking website for Ticket to Work, was targeted at getting more EN's signed up. Oh sorry, jumped into the government world there for a second. EN's are yet another group that I have to deal with at some point. These are Employment Networks. It has an entire paragraph about them on my golden ticket.
I found a list of these EN's on the Maximus website. I typed in my city and state to reach EN's that work with my area. It also states that the list will show other locations that have agreed to work in my area. Interesting, so the one that is clearly geared to Florida is really going to be able to support me all the way here in Indiana? I am already not very impressed. Then I start to click on a few here and there just to see what they are like. Hmmm, broken link to the state page for Indiana Vocational Rehabilitation Services, along with a few other EN's that are listed. A couple of the sites don't even seem legitimate. I'm not forking over $30K for them to help me develop my own business! These folks don't even have a decent website. Ugh, ok enough of this, let's call someone.
Hello Maximus. I finally call the number that was in the pamphlet to get started. After a while of ringing, a man who, of course, barely speaks english. And to boot, he can't seem to talk into the receiver and keeps cutting out. I know that a lot of people complain about folks not speaking english, but maybe they only have a little accent, get over it. Enjoy the accents of non-native english speakers. But, I draw the line, when they cannot speak english well. I think that the individual that I spoke to, had a limited comprehension of english as well. He took the normal information from me. And then asked me what I wanted. This kind of surprised me, as this is the number "To Get Started" with the vocational services. It should be clear what I want, right? I decided to play nice - "I need to get started with the Ticket To Work Program," I tell him nicely. And this is where we go down hill. He has a script that he is obviously reading from, hastily. I stop him from time to time to clarify what he is saying as he is mostly unintelligible. I also interjected when he got to the EN's, with "Some of those on the list do not look reliable." He just continued on, either not comprehending what I said, or ignoring.
In the end, it appears that I have to call EACH one of the EN's and decide which one is going to suit me best. I found 6 in my city out of a list of 61 that apparently work in my area. I have to find one that matches the services that I require and one that suits my disability. Seriously, a very basic drop down menu would be wonderful here.
Let's see what tomorrow brings. That's when I will start the phone calls.
Maybe I am incredibly judgmental, or maybe I just have high expectations. But I have not been impressed so far in my short journey figuring out the Ticket to Work program.
How many steps should this take, and how many different people should I talk to for this to be effective? The first thing I did was flip through the pamphlet that came with my Ticket. It told me to go to the website for valuable information. I also notice that there was a company "MAXIMUS, Inc." that I need to call to get started. Interesting.... a third party handles all of this? Why don't I have any information from them being sent to me then?
Let's go back to my two options at this point - go to the website for Social Security or call Maximus. I did check the website and got some more information. I decided to Google Maximus before calling them. (I like to know exactly to whom I am talking). I found a website for them, apparently Maximus is aptly named. It appears to be rather large in size, handling a ton of different services for the government. I looked at more info on their website going over the Ticket to Work program. They don't have much info online geared toward the beneficiaries like me. Their barebones, ancient looking website for Ticket to Work, was targeted at getting more EN's signed up. Oh sorry, jumped into the government world there for a second. EN's are yet another group that I have to deal with at some point. These are Employment Networks. It has an entire paragraph about them on my golden ticket.
I found a list of these EN's on the Maximus website. I typed in my city and state to reach EN's that work with my area. It also states that the list will show other locations that have agreed to work in my area. Interesting, so the one that is clearly geared to Florida is really going to be able to support me all the way here in Indiana? I am already not very impressed. Then I start to click on a few here and there just to see what they are like. Hmmm, broken link to the state page for Indiana Vocational Rehabilitation Services, along with a few other EN's that are listed. A couple of the sites don't even seem legitimate. I'm not forking over $30K for them to help me develop my own business! These folks don't even have a decent website. Ugh, ok enough of this, let's call someone.
Hello Maximus. I finally call the number that was in the pamphlet to get started. After a while of ringing, a man who, of course, barely speaks english. And to boot, he can't seem to talk into the receiver and keeps cutting out. I know that a lot of people complain about folks not speaking english, but maybe they only have a little accent, get over it. Enjoy the accents of non-native english speakers. But, I draw the line, when they cannot speak english well. I think that the individual that I spoke to, had a limited comprehension of english as well. He took the normal information from me. And then asked me what I wanted. This kind of surprised me, as this is the number "To Get Started" with the vocational services. It should be clear what I want, right? I decided to play nice - "I need to get started with the Ticket To Work Program," I tell him nicely. And this is where we go down hill. He has a script that he is obviously reading from, hastily. I stop him from time to time to clarify what he is saying as he is mostly unintelligible. I also interjected when he got to the EN's, with "Some of those on the list do not look reliable." He just continued on, either not comprehending what I said, or ignoring.
In the end, it appears that I have to call EACH one of the EN's and decide which one is going to suit me best. I found 6 in my city out of a list of 61 that apparently work in my area. I have to find one that matches the services that I require and one that suits my disability. Seriously, a very basic drop down menu would be wonderful here.
Let's see what tomorrow brings. That's when I will start the phone calls.
Monday, January 10, 2011
An introduction.... Again.
I would first like to introduce all of you to my story. I was originally diagnosed with breast cancer in September of 2001. Yes, a month and year that was horrible for many. Not only did monumental buildings fall that September along with our feelings of safety and security, but my own private world toppled as well. I found that I had breast cancer in my right breast. I was only 24 years old, had just celebrated my second wedding anniversary and was in a job that had me running full tilt. Babies were next in my future, not cancer.
Over the next few years I was the poster child for Herceptin. A new drug at the time to treat the dreaded Her2Neu version of breast cancer. Aggressive and hard to treat, a Her2Neu diagnosis is NOT what you want to hear. I responded well to cutting edge treatment, now a standard in treating this particular type of cancer. Part of my story is included in a Lifetime Television documentary "Fighting for our Future." This documented the unique struggle that young women have with breast cancer. And at the time, it was quite unknown that young women can and do get breast cancer. There is also a book with the same title that I highly recommend for anyone diagnosed with breast cancer. Both the documentary and the book cover several women with different stories.
Unfortunately, my story with cancer continues. I went all the way to 2009 - cancer free. By all accounts, I should not have had a recurrence. I had passed all the milestones. I had a great appointment with my doctor, Dr. Miller, in October 2008. We discussed children, we both have boys around the same age. Everything looked great. When she went to leave the room and turned and said - "This is the way it is suppose to go." Two months later I felt a lump and knew exactly what it was. It was just before Christmas. I didn't tell anyone. Why ruin a perfectly fine Christmas when I knew we had a hard battle in front of us. Right after Christmas I went in to the doctor and had a needle biopsy.
My phone rang the next day. I didn't even need to look at the number. I knew who it was and what they were going to say. I immediately got up in the middle of a meeting and left. I tried to find my friend while I was on the phone talking to the doctor who performed the procedure.
I'll skip the details for now. I'll save the rest for another post. But suffice to say - I am on track with another cutting edge treatment and I am hoping for the best. Part of my therapy and dealing with this disease is to talk about it. I want to let other's know that they are not alone.
Over the next few years I was the poster child for Herceptin. A new drug at the time to treat the dreaded Her2Neu version of breast cancer. Aggressive and hard to treat, a Her2Neu diagnosis is NOT what you want to hear. I responded well to cutting edge treatment, now a standard in treating this particular type of cancer. Part of my story is included in a Lifetime Television documentary "Fighting for our Future." This documented the unique struggle that young women have with breast cancer. And at the time, it was quite unknown that young women can and do get breast cancer. There is also a book with the same title that I highly recommend for anyone diagnosed with breast cancer. Both the documentary and the book cover several women with different stories.
Unfortunately, my story with cancer continues. I went all the way to 2009 - cancer free. By all accounts, I should not have had a recurrence. I had passed all the milestones. I had a great appointment with my doctor, Dr. Miller, in October 2008. We discussed children, we both have boys around the same age. Everything looked great. When she went to leave the room and turned and said - "This is the way it is suppose to go." Two months later I felt a lump and knew exactly what it was. It was just before Christmas. I didn't tell anyone. Why ruin a perfectly fine Christmas when I knew we had a hard battle in front of us. Right after Christmas I went in to the doctor and had a needle biopsy.
My phone rang the next day. I didn't even need to look at the number. I knew who it was and what they were going to say. I immediately got up in the middle of a meeting and left. I tried to find my friend while I was on the phone talking to the doctor who performed the procedure.
I'll skip the details for now. I'll save the rest for another post. But suffice to say - I am on track with another cutting edge treatment and I am hoping for the best. Part of my therapy and dealing with this disease is to talk about it. I want to let other's know that they are not alone.
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