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~ Diabetes, Cancer Fighter, Photographer, Exercise, Twins, Boy Scout Leader, Kayak Fishing, Lover of Life

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Monthly Archives: January 2020

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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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.

.

 

Life Goes On!

17 Friday Jan 2020

Posted by Tim Hughes Living with CML in Cancer, Diabetic, diet, Leukemia, Weight Loss

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Cancer, Leukemia, Oncologist, Ulcers, Weightloss, Zantac

_1TH9138Happy belated holidays! Wow!  It’s been a rollercoaster ride for me and my family.  There is no way I can put all that’s been going on in one post.  If I did, it would be a very long post and most would not read to the end.  So, that being said I’ll probably post several topics in the next few days.  I’ll go ahead and briefly tell you what’s been going on though.

Diet  Nonexistent.  I really tired but these holidays were just too much for my weak will power.  I am back on it but and I have lost a few pounds.  I got on my treadmill the other day and I think the thing has a weak motor.  I know I weigh quite a bit but I don’t think the thing should stop suddenly like that. Maybe I’ll rejoin the gym at the local Baptist church up the street.

Dad’s Kidney Stones Dad called me up before Christmas wanting to know if I could take him to the hospital to have a kidney stone removed.  It seems that my mom, which is in her 80’s, had to take her to a clinic in the early morning hours that morning.  The doctor there said that he had a stone which was too big to pass on his own.  1.2mm x .08mm.  The clinic did not have the resources there to break up the stone.  I took him to the hospital and the doctor there said that they normally do not call in the urologist for anything that small.  My dad and I looked at each other. I looked it up and 1.2mm is nearly half an inch.  I called the doctor out on it and he reassured me that my dad could pass the stone.   The day after Christmas, which was about a week later, my sister made an appointment with a urologist and had the stone removed.  I won’t go into how they did it but from the sound of it, I wouldn’t want to have it done.  I spoke to him yesterday and all is well.

Oncologist Report  I haven’t been or heard from my oncologist since last August.  A lot of things have been going on with different meds that had me concerned about my numbers.  You see, I’m on drugs for some ulcers in my lower stomach.  One of the drugs that I’ve been on is Zantac.  This drug has been known to lower the effectiveness of my cancer drug as well as cause cancer too.  In order for the ulcer med to have minimal effect on my cancer drug, there had to be a six-hour delay before I could take my cancer drug after taking the ulcer drug.  Now, the new drug they have me on after taking me off the Zantac, they want me to take it four times a day but still keep the six-hour delay.  Can’t be done.  So far I have only figured out that I can take it in the morning and once at night before going to bed.  This is crazy. Oh, by the way, all my numbers are good.  

Ok, that’s it for tonight.  There are several more interesting items that I want to talk about so stay tuned.

 

 

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