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Tag Archives: Disability

It Was A Tough Decision

17 Friday Jan 2020

Posted by Tim Hughes Living with CML in Cancer, Diabetic, Disability, Retirement

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Tags

Diabetes, Disability, Work

WD1

February 14th, 2014 was a date that I will never forget.  One reason is that it’s the date that I asked my wife of 28 years to marry me.  She said yes, obviously.  The 14th was also the date that I was diagnosed with CML, Cronic Myeloid Leukemia. My life has not been the same since.

Prior to being diagnosed, my weight had increased over the years and my diabetes had gotten out of control. My doctor sat me down and told me that I had better start doing something about it or I wouldn’t live to see my kids graduate high school.  That woke me up a bit.  I started watching what I ate, I started walking some and a friend of mine got me riding my bicycle.  In 2012 I started riding my bike religiously; up to 20 miles a day and up to 30 miles on the weekend.  Even after my diagnosis of CML I kept riding.  In 2015 I rode over 7,000 that year.  But that would soon change.

In 2016, I spent a total of four weeks in the hospital.  Not all at one time but through the year.  My cancer meds were causing fluid to be collected around my heart and lungs.  This was also the time I was diagnosed with congestive heart failure and diastolic heart failure.  This was also the time that my vision got blurry and I was diagnosed with diabetic retinopathy. I had to take injections in each eye to remove the blood that was pooling up behind my retina.  Because of all my health issues, I had to take off from work a lot because of doctor’s appointments and hospital stays.  Some of the meds I was on also caused memory loss and I started making mistakes at work.  One was a bad mistake and I was given a choice to either get fired or take a lower position.  I took the lower position which I also got lower pay.  Since 2016, I have been in the hospital at least 2 times a year spending at least 4 days each time.  I missed my daughter’s high school graduation because I was in the hospital with the flu and pneumonia.  I also missed my wife’s birthday twice because of hospital stays.

Some years back the company I worked for raised the age at which you could retire.  Because I had been there so long, I was grandfathered in and I could retire at the age of 55 because I had over 30 years of service. When I got grandfathered in, I had 42 months until I could retire.  I counted each day.  I couldn’t wait.  On August 15th, 2018 I retired.  I retired because I couldn’t do the work they were asking me to do.  My memory had gotten bad, I couldn’t walk without having to stop and take a breath and it was taking me too long to complete my jobs.  I knew if I didn’t retire I would eventually lose my job.

Since I was diagnosed in 2014 with cancer, I was asked several times why I didn’t try to file for disability. For me, disability is for someone who can’t work.  Even now I still think I can do something.  In reality, I know I can’t.  At my age, now 56, I doubt anyone will hire me with all my health issues.  It took some convincing from my wife and some of my other family members, I filed for disability in Septemeber of 2018.  Of course, with any filing, the first attempt is always denied, at least that’s what I was told.  And with that, my first filing, I was denied.

The simple fact that I can’t do anything but short term because I get so out of breath.  Walking, climbing stairs, going up an incline, carrying anything of any distance; things such as these I get so tired with fatigue and afterward I have to go and lay down for a while to get my energy back.  I can’t see any employer letting me go lay down after I do a job.

So, I got denied.  I immediately called a lawyer that had been highly recommended to me. When I filed for disability myself, I had to send in a lot of documents from all the doctors, the hospitals and such that I had.  It took me about two months to gather all of the information.  After about a month after I filed, they wanted more information.  Another month goes by gathering more information.  So, I had saved all of the documentation that was requested by the Social Security office and I sent all the documents I had saved to my lawyer.  After one year and six months, I had my hearing with the Social Security judge.

I met with my lawyer right before the hearing and he basically told me what not to say and what to say to the judge.  He told me to tell the truth and to tell him exactly what was going on, and I did.  They had a doctor on the phone that was representing the Social Security office.  To say that I was concerned would be an understatement.  My lawyer tried to calm me down because he could tell I was nervous.  The judge asked me a series of questions all of which I answered the best way I could.  The judge then turned to the doctor on the phone.  My anxiety levels hit the roof.  The judge asked him a series of questions regarding my work record, my work skill level and then he started asking him questions like, can he lift 50 pounds, can he crawl on his hands and knees, can I stand over thirty minutes without difficulty, can I sit for thirty minutes without difficulty.  The list went on and on.  To my surprise, the doctor said NO I can not do these things.  The Judge thanked him for his service and said I’m done.  That’s all I need to hear.  And with that he said we’re done.  I was in his chambers for less than 10 minutes.  The guy before me was in there for nearly an hour.

After I left the judge’s cambers my lawyer came and spoke to me.  He said that he felt really good about my case.  I am to call him in three months.  The decision could take up to six months.  But here is the kicker.  If I receive disability, I am supposed to get back pay from the date I filed or somewhere near that date.  He mentioned a figure of $2,100 a month for the backpay as well as my monthly payment.  I know he’s supposed to either get 25% of the back pay or $6,000, whichever is less.  I have a lot of need for this money so I hope I get it.

After all this, I still think that I don’t deserve disability.  I know a lot of people who are in worse shape than I am and they can’t get it.  The system is totally screwed up.  I know I have issues but I feel like I can still do something.  I’m not sure what but I think there is something out there that I can do.  The trouble is getting someone to hire me.

.

 

Living With CML To Be Or Not To Be

03 Thursday Oct 2019

Posted by Tim Hughes Living with CML in Cancer, Disability, Family, Leukemia, Photography

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Tags

Bone Marrow Transplant, Cancer, Chronic Myeloid Leukemia, CML, Disability, Oncologist, Tests

_3TH9526

As a child I used to love to ride roller-coasters.  I would ride for hours just to ride different coasters.  As I got older I out grew my fascination with coasters because my stomach couldn’t handle going upside down and being bounced around as much.  I guess riding a coaster is the best way to describe living with CML. It is for me at least.

The last few months have been just that, a roller coaster.  Since I was diagnosed in February of 2014, I’ve been on three different medications.  I had to change  because either the medicine quit working or it caused fluid around my heart and lungs.  In January of 2016 I had both type A and type B flu as well as pneumonia along with fluid around both of my lungs.  I was admitted into the hospital where they did all sorts of tests.  They eventually removed just over two liters of fluid around my right lung.  There was at least that much or more in my left lung but they would not remove it due to risk of infection.  It was during this time they took me off the medicine that they thought was creating the fluid.

In March of 2016 I was placed on a different drug and up until August of this year, I haven’t had any side effects of the drug.  But, unfortunately due to becoming severely anemic, and after having several tests done, they found that I had a bleeding ulcer.  Oh, but it gets worse.  The medicine for the ulcer reduces the effectiveness of the CML drug.  We were told that it didn’t but it did.  During the first several months after taking the ulcer meds, my CML numbers started increasing.  After several months of this my oncologist decided that he had done all he could for me and that he was referring me to a bone marrow transplant team.  These were to be the darkest days of my life.

About the same time I was diagnosed, another young lady in my community was diagnosed with CML. She didn’t like the side effects the drug was causing so she stopped taking the drug.  Her CML escalated and she had to have a bone marrow transplant.  I followed her on Facebook through her whole ordeal.  She was in the hospital for six long weeks having this procedure. I remembered her ordeal when I was told that I would be having the same thing.

The doctor that I was sent to was not on the transplant team.  The hospital he is associated with is one of the best cancer research centers in the US but the doctor had a lot of growing up to do.  He was fresh out of college. In fact, I have a son that is not much older that he is.  My other oncologist has over thirty years of experience but like I said, this doctor is fresh out of college and from another country to boot.  Nothing wrong with that though.  What this doctor had in knowledge, he lacked in experience.  I saw this doctor about 4 times and it was enough to know that there wasn’t going to be a 5th.  He did have a couple of suggestions that I did get out of our visits.  He stated that I was not a good candidate for a bone marrow transplant and that I was probably taking way too much medicine.  He also mentioned that I was supposed to be taking my cancer meds with food, which at that time I wasn’t.

So, as of today, I’m back with my previous oncologist, my numbers are back where they need to be and most everything is where it needs to be.  I am working on getting disability. I have a hearing in January.  I’ve had to get a handicap place-card because of gout in my right foot.

So, as you see, my life has been somewhat of a roller coaster. It’s been up, then down then on the up side again.  I’ve been reading books and trying to listen to some easy jazz music just to help me relax a bit.

Sorry for the long post.

 

 

 

Filing for Disablility

23 Wednesday Jan 2019

Posted by Tim Hughes Living with CML in Disability, Photography

≈ 3 Comments

Tags

Birds, Disability, Feeder, health, Memory

_3th2621

Yes, I’ve filed for disability.  Let me tell you, so far, it’s been one hell of a ride.  First of all, they tell you to go online, print out the paperwork, fill it out and send it in.  I did that, and while I was getting the information,(doctor’s notes, procedures, diagnosis’) I found out that you can also fill all the paperwork online then submit it once you have it completed.  Of course, I had most of the information filled out before I knew I could do it online.  Once I completed the paperwork online, I hit the submit button and off it went.

Several weeks go by and I get a phone call stating that they had received the paperwork and they, in turn, had sent it to the appropriate people.  I thought I had already done that.  Oh well.

Another week or so goes by and I get a letter in the mail telling me that I’ve got to go see one of their doctors.  I was expecting this.  I had to send the letter back to them stating that I was to keep the appointment.  The week before the appointment I got another reminder about the appointment.

The doctor was a psychiatrist.  I had to see him because of the memory issues I guess.  He asked a lot of questions regarding my health, my daily routine and of course, my memory.  After about thirty minutes or so he was done.  Now the waiting continues.  Oh I know this could take years before I hear anything and it will probably end up being denied.  I understand that.  Of course, I willl apeal it.

Life goes on.

Health Report

27 Thursday Sep 2018

Posted by Tim Hughes Living with CML in Cancer, Leukemia, Photography

≈ 2 Comments

Tags

Cancer, CML, CT Scan, Disability, Lungs, Test Results, Waterdropplet

WD1

For the past six months I have been on a new drug called Bosolif.  At first I was on 500 mg per day.  After a few months a test was performed and my numbers increased.  The medicine was not working.  Not only was it not working, I could tell that I had fluid around my lungs again.  Walking had started to become difficult.  With caution, my oncologist increased my meds by 100mg and he orered a CT scan to see how much fluid had accumulated.  After a week, the results of the scan had come back and, indeed, there was a small amount of fluid around my right lung but not my left.  According to my oncologist, if my meds were causing the fluid, it would accumulate on both sides at the same time and not just on one side.  I was diagnosed with broncitus a couple of weeks prior and he thinks that’s the reason for the fluid.  Since my increase in the meds, the last test results that came back showed that my numbers has fallen.  Nowhere close where they need to be but at least they are falling.

On a side note; I have finished my disability paperwork.  I submitted the online aplication a couple of days ago and sent in the hard copies today.  Hopefully I’ll hear something in a couple of months.

 

Tim

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