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Grayfeathersblog

~ Diabetes, Cancer Fighter, Photographer, Exercise, Father of Twins, Kayak Fishing, Lover of Life

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Tag Archives: health

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

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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.

Long Overdue

10 Thursday Jan 2019

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

≈ 3 Comments

Tags

Bird, Cancer, Chores, Dentist, Feeder, health, Photography, Retirement, Ulcers

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It’s been since September since I’ve posted anything so I figured I’d do a little update on what’s been going on. First of all, I went to the dentist today and had some work done and I had to take a prescription pain pill to take care of the pain that I was in.  So, if this doesn’t make sense, that’s why. As stated in my last post, I’ve retired.  I can’t begin to tell you how happy I am about that. I get updates from one of my co-workers every once in a while and let me tell you when I get off the phone with him, it makes me so happy to think that I no longer work at that place.  The management at that place has taken a turn for the worse and it seems that I left just at the right time.  The stress that I felt while I was there is no more.  That within itself is worth retiring over.

So, what is my plan since retiring?  I’ve got several irons in the fire, none of which requires getting up and going to a regular job.  I was blessed with an excellent pension and my 401k didn’t look bad at all either.  I made an appointment before retiring with a financial planner and he told me that I had nothing to worry about.  In fact, I got a little raise since retiring so I think we’re going to do just fine.

On most occasions, I get up with my wife when she gets up to get ready to go to work.  I usually sit and talk with her while she’s eating breakfast.  After she leaves, I usually take a shower and go to the garage and work on some woodworking projects.  I take care of the laundry and try to have dinner cooking when my wife gets home from work.

Other things such as setting up my camera so that it can take pictures of the bird feeder have been another little project that I’ve been working on.  It’s the simple things in life that make it interesting.  My cats and I enjoy watching the birds in the morning while we’re sitting in the kitchen spending time with the wife while she’s eating breakfast.

On another note and this will be the last of this update for now.  My cancer numbers are starting to look pretty good but on the other side of that coin, my iron levels have started to plummet.  I’ve had to do two iron transfusions and had to have a colonoscopy and an endoscopy to find out where I’m bleeding out.  Ulcers, I’ve got two bleeding ulcers.  Another pill to add to my pharmacy list.

Thanks for taking the time to read and I’ll post again soon.

Today’s Thoughts 4/19/2018

19 Thursday Apr 2018

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

≈ 5 Comments

Tags

A1c, CML, Cycling, Exercising, health, Healthy Living, Outdoors, Walking, Weightloss

Got home late yesterday due to having to work later than normal.  I had my day all planned out before I got to work which included getting off early and trying to extend my mileage from 10 to at least 20 or more miles.  Didn’t happen.  I got to work and found out that I was going to have work the desk dispatching calls all day.  Which also meant I IMG_20180418_174749wasn’t going to be able to get any cycling in.  Not a total loss though.  I did stop at the track and got my 10,000 steps in for the day.

As much as I like getting out on my bike and ride, it’s important to me to get out and do something to enjoy the outdoors, even if it’s just walking on the walking track. Most of last year I just didn’t feel like getting out and doing anything.  Once I made it home from work, I didn’t have the energy to do anything but to shower and relax in front of the television.  I gained weight, my A1c went up and basically felt like crap. Now that I have my health back, for the time being, I’m taking advantage of it and getting out and doing something.  In the short time that I’ve been feeling better, I’ve been able to get out and ride, three times so far, I’ve gone to the track a few times and my A1c has come down a few points.  When I feel better I’m able to take better care of myself.

Stay Healthy!!

A Little Slow

05 Friday May 2017

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

≈ 2 Comments

Tags

Cold, Cycling, health, Medical, Rain, Riding, Sports, Weather

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The weather here in the deep south has been less than perfect for bike riding for me.  The last two days it’s been a rainy, dreary day.  Today the temperature hardly rose above the mid 50’s mark.  Tomorrow is forcasted to be warmer but not until mid afternoon.  My plan is to either get a twenty mile in on Saturday or wait until Sunday when I should have more time.

My last ride broke the 100 mile mark.  That’s pretty good considering that only six months ago I was considering selling my bike because of my health.  I’m looking forward to much healther days along with miles and miles of riding.

Happy Trails

Back in the Saddle Again!

23 Sunday Apr 2017

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

≈ 2 Comments

Tags

Cycling, health, Medical, Sports

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It’s been a while since I’ve posted anything but my absence hasn’t been anything bad.  My health has steady improved so much so that I’ve tried to start riding my bike again.  I was a bit concerned when I got started because I actually thought that something was still wrong with my breathing.  I talked with cardiologist about  this and he just informed me that I was out of shape.  After all, it’s been nearly two years since I’ve been on my bike.

When I first started back I was in for a huge disappointment.  I heard about a bike ride that is held on every Sunday.  It ranges from 8 to 10 miles.  Remember those 20 mile rides I used to do every day?  Lol.  Not any more.  After about three miles I knew I was in serious trouble.  So many hills and I couldn’t remember how to clip in my peddles.  In fact, before the ride even began I fell flat on my face trying to clip in.  We stopped so many times waiting on the slower people that I think that’s what actually wore me out trying to clip in to those damn peddles.  I realized then that I needed to ride around the house for a bit and get reacquainted with my bike.  Shorted ride 1.34 miles, Longest ride thus far 13.48 miles.  I’m averaging about 10 mph.

There is a ride in June called the Hot Hundred.  You got it, it’s a 100 mile ride with smaller rides available.  The shortest is a 29 mile ride that I used to ride in.  I have my hopes of riding it this year.  After my 13 mile ride I have my doubts.  I still may get to ride it, after all it’s in June.  It’s something that I’m working toward.  If I don’t this year, there’s always next.

 

Round Robin With the Doctor’s

18 Sunday Sep 2016

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

≈ 3 Comments

Tags

Can't Breathe, Depression, Doctor Appointment, Fluid Build Up, health, Lungs

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I’m literally sitting here fighting for each breath I take.  I’ve been on the phone with three different doctors the last two weeks trying to get one of them to make a decision.  We’re all in agreement that we assume that my CML meds are causing fluid to accumulate around my lungs.  The problem I’m facing is finding a doctor willing to take responsibility and assisting me to drain the fluid.  I first contacted my oncologist thinking he would take me off my drug for a few weeks, he suggested contacting my pulmonary doctor.  My pulmonary doctor suggested for me to see my cardiologist.  I contacted my cardiologist and he suggested that I spend the weekend in the hospital.  I refused that option because my daughters were coming in for the weekend and that’s the last place I wanted to be.  So, I go see m cardiologist tomorrow at 3pm.  What the hell he’s going to do is beyond me.  The problem is not my heart it’s the fluid in my lungs.  I’m so put out right now I can’t think straight.

Life’s Changes

05 Monday Sep 2016

Posted by Tim Hughes Living with CML in Photography

≈ Leave a comment

Tags

Changes, College, Creek, Family, Five Mile Creek, Girls, health, Life

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I believe Heraclitus that once said “The only thing that is constant is change.”  This is so true.  How we handle change is what’s important.  There are those that can’t deal with it and go into some sort of mental breakdown while others it’s like water off a duck’s back, or they hide it very well.  My wife is one that can either hide it very well or she has found a way to deal with it.  I guess I need to talk to her to find out how she does it. She does not, however, like the time change.  She fusses about it all the time.  Me, it doesn’t bother me one way or the other.  That’s what I call the little things.  Little things in my book doesn’t bother me so much.  It’s the big things that, if I sit alone in a room and have time to think about it, I worry about it.  So much so that it bothers me; I lose sleep over it, my attitude changes and my temper get’s shorter.

This year alone has been full of changes and misfortunes.  If I had to list them by importance I’d have to say having my girls moving off to college was one of the biggest changes in my life right now.  All the crap with my health is a close second.  But dealing with my girls gone is quite challenging for me to deal with. It’s what I’m used to I guess.  I’m used to seeing one of my girls sitting in the recliner when I get ready to leave for work in the mornings.  I’m used to the same daughter saying grace at meal times.  I’m used to the hug I’d receive right before I’d leave for work in the mornings and the smiles I receive when I got home.  Now, I see empty beds at bedtime, an empty chair at the dinner table and only a phone call late at night to tell me how their day went.  I guess you could say that it’s the beginning of the end of life as I know it.

Anyone with kids will tell me that I’m not alone.  This has been going on for hundred’s of years.  You’d think they would have come up with a cure for this by now.  I know it’s been going on for years but for me, it’s only been going on for five weeks, two days and thirteen hours. I really miss my girls.  I try not to dwell on the fact that they’re not here and that if  I need to talk to them all I got to do is send them a text and when they can they’ll call me back.  Another thing, they’re only an hour away from me.  It’s not like some kids and be hours by plane from their folks.  Oh gees, I’m glad that they’re close by.

I guess there’s one good thing about missing my girls is that while I’m missing them I’m not dwelling on the issues I’m having with my health. That alone will cause anyone to go into deep, dark depression.

I’ve starting trying to get out more and getting more active.  Yesterday I went on a small hike, about 200 yards or so.  I walked down to this creek that our boy scout troop helped clear a path to several years ago.  It’s being used and I even saw some fire rings being used. One thing that I saw that I didn’t like is the amount of trash left by the campers.  Why can’t people pick up their trash?  I can never understand that.  Oh well, thoughts for another story.

Improving? Not so Much.

28 Sunday Aug 2016

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

≈ Leave a comment

Tags

Alabama, CML, Doctor, health, Kids, Leukemia, Million Dollar Band, Oncologist, Parents, Sick, University of Alabama

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I started back on my CML meds last Monday and to be honest I think my breathing has gotten a little worse. I’ve started climbing the steps at work a little more and trying to maintain at least 10,000 steps in a day. I spoke at length to my oncologist last Monday the day I started back on my Sprycell and he told me that the majority of the people who end up with water retention will do better at a lower dosage.  I’m now at 80 mg instead of the 100mg that I was once on.

I’ve decided not to just sit at home waiting to see if my lungs will fill back up with fluid.  I don’t really feel like getting out and doing anything but I feel that I’ve at least got to try  and get what little exercise that I can get.  I think it could only help matters if I get off the couch and do something.

Yesterday, my wife and I met our son at the university where my daughters are attending.  They’re both in the band, one plays the sax and the other is a band manager.  Yesterday was their parent preview show.  It was awesome seeing my daughter’s perform. I got to meet one of their roommates and enjoyed going out to dinner afterwards.  As usual it was hard for us to leave after visiting with them.

Today I went to my parents house to check on them as well as my bees.  It’s been at least two months since I’ve done either one.  The bee yard was grown up with weeds and it took everything I had to use my weedeater to chop down the weeds just so I could get to the beehive.  After about an hour of cleaning up I went and sat with my parents for a couple of hours.

It was hard to leave my parents. They are both getting up in age and their health is not as good as it used to be.  My mom had to have more surgery a couple of weeks ago on her diaphragm due to finding a hole where her colon and her intestine were coming through.  The doctors seem to think that this was caused by the accident they had back in February.

The above picture is of the band managers.  The young lady is my daughter.  What a  trooper.

365 Day Photo Challenge 203/365 “Health Insurance; Love it/Hate it”

21 Tuesday Jul 2015

Posted by Tim Hughes Living with CML in Photography

≈ 1 Comment

Tags

365 Day Photo Challenge, Cancer, CML, Copay, CPAP, Deductible, Drugs, Gleevec, health, Insurance, Medications, Photography

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Health Insurance can be a love/hate relationship.  I am fortunate to work for an insurance company and I get my insurance at a discounted rate but it’s still very expensive. I still have copays and I still have deductibles that I have to meet before the insurance will pick up.  I fill sorry for those that have to fork out thousands of dollars each year for insurance.

Today I had to go pick up my new CPAP machine.  When the lady called me to tell me that I now qualified for a new machine I asked her how much I owed.  She checked her computer and said that my deductible had not been met and that my payment would be around $500.00.  I don’t have $500.00 to spend right now and told her that.

I have CML, a rare form of Leukemia.  My medication is very expensive.  It averages out to be around $600.00/pill.  I take one pill a day and my prescription is for a thirty day supply.  My insurance out-of-pocket yearly deductible is $2500.00 and my prescription costs $18,000.00 a month.  That means that I would have to pay $2500.00 for the first month and the insurance company would pay the remainder.  But first, and the most important thing is that I would have to come up with $2500.00 before I could get my first prescription.  Pocket change, right?  Not for me.  Who has $2500 just laying around?  Again, not me.

A little known fact is that some drug companies want you to take their drug.  So much so that they are willing to pay you to take it.  I am very fortunate to be on such a drug.  Gleevec is the manufacture of the drug that I’m on and they offer a financial assistance program to those that can’t afford the ridiculous prices of the medications. I first read about this on their website once I found out that I would be taking the drug.  At first I thought that it was only for those that didn’t have insurance but thankfully I was wrong.  I called them up and they paid all but $100.00 of the $2500.00 of my out-of-pocket deductible.  Wonderful news!!  I pay the pharmacy $100.00 at the beginning of the year and Gleevec pays the rest and I don’t pay a dime the rest of the year for this drug. That’s not the only good news that came out of this.  Remember the CPAP?  It seems that my CPAP was covered under the same plan.  Being that my deductible was indeed met I walked out with a new CPAP and a new mask for $00.00.

“Life Goes On!”

365 Day Photo Challenge 37/365 “Reflections”

06 Friday Feb 2015

Posted by Tim Hughes Living with CML in Photography

≈ 4 Comments

Tags

365 Photo Challenge, Alabama, Chicago, health, Photo, Photography, Retirement

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Well, we’ve made it to Friday.  I spent the day doing what I had to do to get the job done.  I’m 51 years old and I can retire with full post retirement benefits at age 55.  The way things are going right now with my health you had better believe that I won’t let the door hit me on my way out.  It hadn’t always been as stressful as it is now.  I’ve been at this company 29 years and I used to love doing what I do.  Now with new management with a different viewpoints make my job and everyone elses job a lot more stressful.  I’ll be lucky to survive the 3 plus years I have left.

On a much brighter note, the above picture was taken in Chicago at the Giant Bean.  I went on a band trip with my two daughters and we spent a few days there.  We had a great time.  I’ve never been to a city as large as Chicago before and unless something happens I guess I never will again.  The architecture there was simply amazing.

As I said before, today is Friday.  I hope everyone has a fantastic weekend.  I know I am.

“Life Goes On!”

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