Prompt for the Day: “Not Lemonade”

The optimistic people at the Daily Post group of Word Press came up with today’s prompt of “Not Lemonade” to try to inspire our daily creations.  They also added two sentences to help-“When life gives you lemons… make something else. Tell us about a time you used an object or resolved a tricky situation in an unorthodox way.”

But I Like Good Lemonade

Give me a few lemons and some sugar, and I will whip up a great batch of lemonade!  During the summer lemonade is my go to drink of choice, beats the heck out of iced tea or a soda.  Unfortunately, lemonade is not the choice of too many others.

When we bought and moved into our house in August, there was no ramp for me to use to get my wheelchair in and out of the home.  So for several months, we survived by using slats of cheap aluminum to get me and my wheelchair in and out.  Scared me to death traveling both up and down the back door.  By the end of the year, I had found and contacted a company that built ramps to enable handicapped people like me to access the world.  If you need similar help visit the organization that has the single driving purpose of working to create access for everyone at: http://www.ramps.org/ The gentlemen that came to my home were all very polite and conscientious.

Unfortunately, the weather didn’t always cooperate.  So due to rain, it took a little longer than they wanted it to, but I was ecstatic that there was going to be a better solution in the future!  Once the rain broke they worked hard every day.  The last day of the build, it started raining just as they were cleaning up the site.  Now am the happy owner of a wooden ramp that meets all ADA requirements!  Can come and go as I please now.

Please Help Fight this Evil Disease

The medicine my neurologist has me on for my multiple sclerosis is called Tysabri. Trying to find the actual cost on the internet is impossible. I remember when I first started on the drug the amount the facility tried charging me was well over $2500. There was no way my husband and I could afford that every 28 days! Biogen (the company that manufactures the drug) has been helping us with some of the cost of the drug, but will not continue helping indefinitely. So I have started a Go Fund Me campaign. To contribute to the fund, click on the following link: https://www.gofundme.com/zfabhdes

 

 

 

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Prompt for the day: “These Horns Were Made for Tooting”

The daily prompt for the day reminded me of a song “These boots were made for walking…” but I digress. In reality today’s prompt is “These Horns Were Made for Tooting“. With a pounding migraine, please no loud horn playing at the moment!

Tried taking some more Ibuprofen, like when I took it earlier no effect! Need to stop wasting both time and money on ineffective medicines. Problem is stemming from extremely tight neck muscles, so technically it is not a migraine. That is why I have not tried taking any of my migraine medicine, Sumatriptan. Why waste expensive drugs when the problem is not a true migraine?

My doctor is unable to prescribe muscle relaxants with out an actual office visit. No longer able to drive, so actually visiting the doctor must be scheduled weeks in advance. Gave up driving years ago before ever moving into the state of Minnesota back in 2008. Knew back then I should not risk taking an innocent (if you can still find one) person’s life.

With my vision constantly going down hill, can no longer judge distances properly. Found out recently there is a name for that, it is referred to as spatial vision problems. Don’t care what it is called, it just sucks! Have a wheelchair ramp leading out our back door, so I can get in and out of our house. My husband caught me almost taking my wheelchair down the stairs that led off the ramp for the walking people of the world, he installed a rope that warns me where the steps start so I don’t fall off the ramp!

Leave it to me to try driving my manual wheelchair off my wheelchair ramp! Who else could do something so stupid? Just want to be able to climb a good tree occasionally. Miss the old apple tree I used to climb when I was younger.

Prompt for the day: “These Horns Were Made for Tooting”

The daily prompt for the day reminded me of a song “These boots were made for walking…” but I digress.  In reality today’s prompt is “These Horns Were Made for Tooting“.  With a pounding migraine, please no loud horn playing at the moment!

Tried taking some more Ibuprofen, like when I took it earlier no effect!  Need to stop wasting both time and money on ineffective medicines.  Problem is stemming from extremely tight neck muscles, so technically it is not a migraine. That is why I have not tried taking any of my migraine medicine, Sumatriptan.  Why waste expensive drugs when the problem is not a true migraine?

My doctor is unable to prescribe muscle relaxants with out an actual office visit.  No longer able to drive, so actually visiting the doctor must be scheduled weeks in advance.  Gave up driving years ago before ever moving into the state of Minnesota back in 2008.  Knew back then I should not risk taking an innocent (if you can still find one) person’s life.

With my vision constantly going down hill, can no longer judge distances properly.  Found out recently there is a name for that, it is referred to as spatial vision problems.  Don’t care what it is called, it just sucks!  Have a wheelchair ramp leading out our back door, so I can get in and out of our house.   My husband caught me almost taking my wheelchair down the stairs that led off the ramp for the walking people of the world, he installed a rope that warns me where the steps start so I don’t fall off the ramp!

Leave it to me to try driving my manual wheelchair off my wheelchair ramp!  Who else could do something so stupid?  Just want to be able to climb a good tree occasionally.  Miss the old apple tree I used to climb when I was younger.

 

Exciting day – new cushion for chair seat!

Man who originally delivered my wheelchair back in 2013 delivered the replacement cushion for the wheelchair yesterday! (Unfortunately, the cushion needs replacing after two years.  Talk about faulty design!)  When the chair was originally delivered, he had to take the frame apart a little to remove spacers in the frame so it would fit through the bathroom door in the crappy apartment complex where we were living at the time.  Was told it was a handicap accessible apartment when we moved in!

Now we live in a house that we purchased and moved into, in a nicer city that we can make changes to home as needed.  Have a wheelchair ramp from my back door to the outdoor gate.  Now, weather permitting, I can come and go as I please.  The main floor of the house is completely accessible!

Had the gentleman park in the driveway of our detached garage, then enter through our house’s back door.  He got the board from my old seat then added it in the new seat cushion.  Now I have a much more comfortable chair, like I had when I first got the wheelchair back in 2013.  While he was on site asked him how to tighten my brakes, because they were failing to hold the chair still on a regular basis.  He taught me that all I needed was a few turns with an number 4 Allen wrench.  My eye sight is so bad that I had failed to see that the chair had a place that required adjustment by Allen wrench.

Now my husband and I can take care of the chair, since the owner’s manual that came with the chair hadn’t told us how to keep the brakes tight.  Asked the gentleman about what it would take to replace the other anti tip bar an my wheelchair ,  since it was damaged after the first ice / snow in 2013.  Apparently, my health insurance should cover the replacement!  If I had known that, it would have been replaced a long time ago.

The apartment complex had failed to clean the handicap parking areas after the winter mix fell.  Was able to safely get out and go to my infusion appointment, but when we got home it had snowed even more.  So getting from the car to my wheelchair cost me the use of one of my bars!  It was so badly bent that it could not be reused.  My husband was able to cannibalize the bent bar’s insides.  He inserted them in the bar that was not bent, but had lost it’s inside parts.  With the unbent bar and the guts from the bent bar, he was able to fit my chair with the left anti tip bar.  So have been surviving on the one bar since winter of 2013.

Want to be able to do some gardening next year, but will need the chair to be able to get around the back yard safely.  Don’t feel secure with operating it with just the one bar on it like I have been doing.

Got my infusion on Wednesday!

Needed it since two weeks after my last infusion!

The infusions are not lasting as long for me as they did when I started on this medicine back in 2010.  When I first started getting Tysarbi infusions, I would be able to fully function until my next dose 28 days later.  2012 started seeing a decline in the length of benefits.  Would only remain functional 3 and a half weeks after infusions.  During the second half of 2014 went down to 3 weeks flat.

Now the infusions only last two weeks.  Then I am back to being completely clumsy 24 hours a day.  Good thing the house we purchased is set up for my lack of coordination!  Have handle bars on the upstairs bathroom toilet  and a safety rail on my side of the bed in our bedroom.

Even better is the wheelchair ramp that leads from our main level back door all the way to the gate out our fence by the detached garage’s driveway!  Now I can actually leave the house unassisted.  Whole new concept, independence!

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Patience occasionally pays off!

Back on Friday April 17th, 2015 at the suggestion of a human resource person who works for my health insurance company, I contacted the ramps supervisor of the company that helps provides ramps for the disabled to their homes.  They are located all over the country through community ramp building programs.  Here in the St. Paul, MN area a landscaping company known as Tree Trust provides the physical laborers.

I called The Ramps Supervisor and he told me I had to provide him with my social security award letter, 2 years full tax returns and the pay stubs we had received from the past 6 weeks work.  He visited my house on Mon. April 27th.  He inspected the design of our house to determine the most optimal location of the ramp.  I pretty well knew which the easiest way to put one in was, but he was the expert.  Turns out he agreed with me, the only feasible location for the ramp would be the back door.  He took the information I had provided him with, crunched the numbers, and came to the conclusion that there would be no cost for our family.

Took a while for them to get the permits required by local laws to allow our ramp to be built.  On June 15th the supervisor came with his crew to get them started.  Told the supervisor the guys could use our downstairs bathroom if they needed to, because it has an actual door on it for their privacy.  Our upstairs restroom’s door had to be removed so I could get in it with my wheelchair.  Now it has just a curtain over the doorway opening.  All the guys were very polite and friendly.

Let them know I had to be able to get out of the house on the 17th due to a scheduled doctor’s appointment.  On the 17th  the ramp was up and reached down to the ground, but I had promised the supervisor I would have my husband help me use the ramp down until they were officially finished.

My husband pushed me down the ramp which had safety railing on it now.  Smelled really good due to the wood that it was made from.  There was still no path to the back gate, so he took me across the yard to the gate.  The crew normally didn’t arrive until 8 AM, but we had to leave around seven.  They knew that they would have to use the local gas station if they needed a bathroom, until we got home.  It was after 2 PM when we got home.  The crew were hard at work.  There was now a wooden path from the gate to the back door.  Once my husband had took me up the ramp, I opened the door again and yelled out “the bathroom is back open if you need it”!  Later, they had my husband, who was outside in the detached garage, bring in the paperwork saying the build was finished.  I signed where necessary and he took the paperwork back out to the team.

As the crew was cleaning up the site, it started raining!  They managed to get it complete in between rain storms.  Had a gushing rain here the day before they started the build.  The rain thankfully held off again until they had it completed.

It’s happening!

The team from Ramp Builders are starting to build my wooden wheelchair ramp out my back door!  Should be fully completed sometime this week.  I have a doctor’s appointment in two days.  The Ramps Supervisor said they will get the ramp to where it will reach the ground by then.  Will take a little longer until the safety rails are all up, but at least my husband will be able to get me to the ground safely.

When the ramp is completed, there will be a wooden pathway to the back gate.  Will be able to actually get outside and meet my neighbors!  Gardening will be great too.  Looking forward to the future!

Just feel like I should be out there helping them.  Am going to stay inside out of their way and let them do the job they were trained to do.  Have no knowledge of legal safety requirements for a wooden ramp.   As long as it lets me escape from the house on occasion, I will do what they tell me needs to be done.

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Great day!

My husband replaced my sub pubic catheter yesterday.   It wasn’t letting urine flow through it like normal.  Been feeling a little ill for a couple of days.  He removed it to discover that the part that was inside my body had started to crystallize again.

Got up this morning to find that my right ankle / foot which had been swollen for several days was back to normal.  It hadn’t hurt or anything, so I wasn’t too worried about it.  Think the swelling was caused by a weather front that moved through over night.

Called and placed order with Merwin Home Medical for two replacement catheters.   Just wish their web site still enabled me to place order directly from the web page.  Let the lady know that it was not a rush situation, since I have one spare left in the house.  Just do not like to risk not having a spare on hand.

Got a call from the gentleman who will be supervising the build of my wheelchair ramp letting me know he would be dropping supplies off in our back yard for my ramp it to built next week!  I was just hoping to have a ramp up before thje end of July.  That way we wouldn’t have to deal with surviving another winter ramp less.  He works for a company called Tree Trust.  Link to Tree Trust web site   In his spare time, he donates hours to an organization whose goal is to create access for everyone  link to organization that creates access to everyone.

He told me that my records were processed resulting in the cost of my ramp to bee free!  Just had to supply the ramp builders with our tax records for the past two years along with pay stubs for the past six months.  I have no problem with doing a little research on  the computer for others.  Have even less of a problem when the research benefits me or my husband!

Can’t wait until next week gets here and they get started.  From the weather forecast I watched this morning, think it will be rained out unfortunately.  But at least I know it will be built!

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