Tag Archives: Tysarbi

Prompt for the Day: “Karma Chameleon”

The ever curious people at the Daily Post division of Word Press came up with the prompt of “Karma Chameleon” to ignite our creative fires for the day.  Then they asked a simple question-“Reincarnation: do you believe in it?”

Prompt got me thinking of a song: by the Culture Club by the same name.  Here is the video.

Reincarnation-  Who knows?

Doubt I had a life before this nightmare!  Why would have I come back to live in hell again?  Am not that much of a masochistic personality, myself.  Constant pain is no stranger to me these days.  My back hurts due to childhood scoliosis, my right big toe hurts do to an old outbreak of athlete’s foot that I failed to get cleared up.

Will end up having to visit a podiatrist to try and get the nail of my big toe on my right foot removed.  Want the fungus completely eradicated from my body, once and for all!  When you get fungus on your feet, DO NOT TRY to fix the damp problem by using creams or lotions!  My mother had a similar problem.  She had to take medicines in pill form for weeks and have the nail removed as well.

Please Help Fight this Evil Disease

The medicine my neurologist has prescribed for me for my multiple sclerosis is called Tysabri. Trying to find the actual cost on the internet is basically nearly 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 then or 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

Prompt for the Day: “Morphing” – Bloggering

The evolutionary team at the daily Post division of Word Press decided to use “Morphing” as today’s daily prompt.  They included a few statements.”Language evolves. The meaning of a word can shift over time as we use it differently — think of “cool,” “heavy,” or even “literally.” Today, give a word an evolutionary push: give a common word a new meaning, explain it to us, and use it in the title of your post.”

Bloggering

Bloggering is the taking part in the act of helping create more people becoming bloggers!  I have been on the recipient end of this practice for the past several months.  I have enjoyed the practice of plain old blogging daily for over a year now.  Have made friends of other people like myself who also participate on a regular basis.  We share tips and blogging strategies on a periodic basis.  Not to be confused with the more common word of blogging.  Bloggering is helping others to become more effective bloggers.  Have had several other more experienced bloggers help mentor me in the art of blogging.  Therefore by definition, they have committed bloggering!  Am very thankful they have done so.

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

All help will be greatly appreciated. Thank you for your generosity!

 

 

Prompt for the Day: “Unexpected Guests”

The prompt for today was unappealing, so I used the prompt offered on December 15th by the extroverts at the Daily Post division of Word Press.  The prompt I have chosen to use is “Unexpected Guests“.  They also gave two additional sentences to whet our writing apatite – “You walk into your home to find a couple you don’t know sitting in your living room, eating a slice of cake. Tell us what happens next.”

As an introvert who is very concerned with safety, if my husband is not home, the first thing I do is get on my cell phone which I  carry with me everywhere and call 911!  Proceed to the back door where my wheelchair ramp is (if I am not deterred) and escape with my life still intact.

Once the police arrive, have them dispose of whatever the intruders were eating (cake is not normally in our home) and thank the nice officers.  Ask the police if they had any idea how the people were able to break into our home, so we can correct the security problem.

If my husband is home, there will be an argument after the strangers leave about why he didn’t warn me they were coming.  After the heated discussion is finished, resume talking about what is on the schedule for the remainder of the day.

Please help fight my 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 it , 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 manufacturing drug company) 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

All help will be greatly appreciated.   Thank you for your generosity!

 

 

Prompt for the Day – “Pour Some Sugar on Me”

The sweet people from the Daily Post division of Word Press came up with the following prompt for the day: “Pour Some Sugar on Me“.  Then they asked a few questions: “What is your favorite sweet thing to eat? Bread pudding? Chocolate chip oatmeal cookies? A smooth and creamy piece of cheesecake? Tell us all about the anticipation and delight of eating your favorite dessert. Not into sweets? Tell us all about your weakness for that certain salty snack.”

First thing that came to mind was a song from Def Leppard by the same name.

My favorite sweets

Basically, I prefer plain dark milk chocolate.  Generally eat three pieces a day.  Hate other additives to my chocolate these days.  Too big of a chance of having an allergic reaction to the additive.

Occasionally, after taking a lactose digestive aid I will eat a piece of silk chocolate cheese cake.  The last time I indulged in the cheese cake was literally several years ago.  When my husband and I were first married, I would make homemade fudge for the holidays (our anniversary is in December) so I spoil us with sweets.  Now that we have been together for twenty years, we both try to watch our weights.

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Please help fight my 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 it , 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 (manufacturing drug company) 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

All help will be greatly appreciated.   Thank you for your generosity!

‪#‎30DaysOfContent‬

 

Prompt for the day: “The Great Pretender”

The artful people of the Daily Post group of Word Press crafted today’s prompt of “The Great Pretender“.  They also posed a question, followed by a request.  “Are you full of confidence or have you ever suffered from Impostor Syndrome? Tell us all about it.”

In my life

It all depends on which period of my life you are discussing.

  1. While growing up in the forgotten part of southern Illinois, pretended to be smart and religious christian to make my father happy.  The church in which I was forced to belong , the United Church of Christ, was money hungry to put it politely.
  2. Moved out of state to attend college in Missouri.  While there, tried to join the domination located there to be told informed they weren’t interested in letting college students join.  Joined a Methodist church that welcomed and let college kids participate in their faith.  Ended up getting married to my husband in that church because he had joined it as well.
  3. Got a job that forced us to move to the Chicago-metro area of IL.  Was the first female in the branch of the company to be hired.  Did a lot of pretending to fit in with the all male environment.  Spent 18 months there.  While on a contract to cover for a man who’s wife had a baby out in California.  Had to fly there going through and stopping at Denver International Airport in Colorado.  While taxing down the runway to return home, saw what literally looked like fire raining down from above in the sky.  Knew I wanted to live in that place next!
  4. Got transferred within the company to the Denver area branch.  The company started to disintegrate from lack of business.  Saw the signs before, so I found another company to work for in the same field of employment.  Lasted only a month or so there.  Found a different field of work that still used my technical knowledge.  Started the new job, the Monday after the Friday I quit the last job!  Company was on shaky grounds before I started.  Was unaware of the fact.  A little over a year and a half after I was hired, the company filed for bankruptcy.  Was let go like all the other people working there.  Was unemployed for the first time in my life.  After much searching for new work, was hired by a contractor for the Department of Homeland Security.  My husband was not happy with where we lived.  He wanted to move to Wisconsin.
  5. I resigned my work and we packed up the house and moved to try and purchase a bar in WI.  There was no employment available in my field anywhere near where we were living.   So with absolutely no income coming in, had to seek employment some where.  Made the mistake of accepting the first full time job offered to me.  Led me down the road to try committing suicide, I was so miserable!  Ended up having to file bankruptcy.  Lost our house in CO and all my retirement savings that I had amassed during my years of employment.  Had to retreat with our tails between our legs back to the miserable area of southern IL.
  6. Back in IL, we lived in my dead grandparents old home.  Filed for medicare disability since I was no longer able to work.  My husband was able to find employment in a nearby town.  With my health deteriorating at an alarming rate had to get help from the state to take care of me.  Was not able to keep the house clean and running like I’d always done.  A little over 18 months, had given us the chance to get back up on our feet financially.  We returned to the city in which we had been married in MO.
  7. Since my husband was able to transfer the position he worked in IL to MO, we still had income coming in.  Was able to get an electronic wheelchair paid for through my medicare disability.  Was still not able to find myself work.  Now was in my wheelchair 24 hours a day.  The location he was now working in did not treat him well.  He transferred to another location.  Still unhappy, he decided we had to move to another state entirely!
  8. Minnesota was were he wanted to move to this time.  Did some research and discovered a town that had handicapped housing available.  Unfortunately, his employer did not have a location anywhere near there.  So we moved into an apartment complex that was supposed to be fully handicap accessible. (Apparently, an actual person confined to a  wheelchair had not ever tried living there successfully before!)  Was a living nightmare!  Electric wheelchair would not even fit in the doors.  Thankfully still had brought my manual chair that I have had since 1996 along when we moved each time.  The wheelchair began to show its age.  Brakes no longer worked.  Would not even fit into the bathroom when we eventually moved down to the first floor,  had to remove the leg rests from the chair.  Looked into getting a new wheelchair from my disability insurance.  They had a little problem getting it small enough to allow me to be able to use the restroom.  After three tries, they got the perfect model.  Now had a chair that the gentleman who delivered it taught me to take care of the brakes.
  9. We started looking for a home so we could get out of the dreaded apartment complex from hell!  Enlisted the aide of a helpful realtor.  Found a house located in a city that had 24 hour transportation available for the handicap population.  Closed on the house on the 15th of August.  Moved in on the 20th!  Love our new neighbors.

Please help fight my 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 it , 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 (manufacturing drug company) has been helping us with some of the cost of the drug, but will not continue indefinitely.  So I have started a Go Fund Me campaign.  To contribute to it click on the following link: https://www.gofundme.com/zfabhdes

All help will be greatly appreciated.   Thank you for your generosity!

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Infusion this past Wednesday

Got up at 5 AM so that I could get a shower in before we left for Minneapolis.  Used the bathroom and got dressed.  Tried waking my husband up again, since the alarm had not had the desired effect.  Turned the bedroom lights on.  Went into the front room and turned on the lights there, so I could start taking my morning medicines.

Returned to the bedroom and told him he had to get up.  Then I laid out my clothes to wear to the infusion center.  Fed our cat, then went into the front room to drink my breakfast.  (Meal supplement shake, not alcohol like you were probably thinking!)  Once I had finished breakfast, had to take a good bowel movement.  Ended up stopping the toilet up.

My husband had to take the plunger resolve to the problem.  When he was done, he had to use his bathroom which is downstairs.  He came back up, so I took the three ibuprofen tablets I need to kill the pain of the water hitting my sub-pubic catheter.  Went into the bedroom and got undressed.  Went into the bathroom and removed my underwear.  Turned the water on hot to get a warm temperature in the bathroom sink.  Let my husband know that I was ready to get in the shower.

He came in and helped me onto the shower chair in the tub.  Since I had gotten the water to a warmer temperature in the sink, you would think the water coming out of the shower head would be warm to start with.  Never works that way, unfortunately.  Took a few seconds to get the warm shower I was hoping for, but eventually it warmed up enough to start washing my back with my shower brush.  Put the brush down on the shower floor and got my hair wet.  Reached around with my left hand to grasp the shampoo from the side of the shower.  Got my hair covered with the sham (fake) poo (shit) and proceeded to scrub my hair.  When my hair had been washed, started to rinse it out completely.  Made sure it was out of my eyes, then reached to the right side of the shower to get my conditioner.

Smoothed my hair down then started applying conditioner.  Once my hair had been thoroughly, conditioned put the bottle back where I had gotten it from.  Picked up the soap from the shelf and started washing my body.  When I finished soaping up, rinsing started.  Used a plastic cup to help reach where the clean water from the shower head wasn’t reaching.  Then I started rinsing out the conditioner I had applied to my hair.  When that was complete, did one last rinse down my back, then turned the water off.

Yelled to let my husband know I was finished with the shower.  He came and put me on my wheelchair.  It was then that I noticed I had forgotten to put what we affectionately refer to as my “crack” (because it dries my crack) towel on my wheelchair.  Had him grab it, while I transferred to the toilet.  He put it on my wheelchair, so I transferred back to my wheelchair.  He used my bath towel to dry his hands then he gave me the towel so I could get myself dried off.  Hung my towel back on the towel rack, turned off bathroom lights, then went into the bedroom.

Got fully dressed and returned to the front room.  Had my husband apply a small amount of Lidocaine and Prilocaine cream to the port on my chest that goes directly to my jugular vein.  That way it would be numb before the nursing staff had to access the port for the infusion at 11:30 AM.  For some unknown reason the numbing cream has to be on for at least 3 hours before nurses can safely accessing my port, have really good reflexes if I am not fully numb.

Since I was now completely ready, he went downstairs to take a shower.  I grabbed my shoes out of the bedroom, than came back and started doing a fill-it-in puzzle until he was ready to get his breakfast.  Put my shoes on, then moved the bag with all my supplies for the day out where he could get to them.

He took my bag and went to move the car to the driveway for our detached garage where my ramp ended at the gate to our backyard.  He came back into the house to brush his teeth.  I grabbed my emergency inhaler and cell phone and went out the back door for some fresh air, since it was still cool outside.  Came back up the ramp and reopened the back door so he would now where I had disappeared to.  Went back down the ramp and out the the back gate.  Heard the car make a little noise.  He had unlocked it from across the yard!

He locked up the house and then came and helped me get into the car.  Since we were way ahead of schedule we decided to go ahead and visit the store where he had planned to go after he dropped me off for my infusion.  The store is where I get my urine bags from.  Had used the last of my overnight urine bags a few days ago.  He was also supposed to get me a  new leg bag,  The leg bag is what I use when visiting a normal doctor, since it can have urine samples drawn from it.  He came out of the store and we drove to the infusion center.

The center was short staffed, so they didn’t come out to bring me back until 11:45.  Went over the recliner the nurse had selected for me to get my Tysarbi infusion in.  We ran through the required questionnaire.  Like what was my full name, had I experienced any new or worsening symptoms, had any steroids administered, or other new medications. Since I give any changes to my neurologist before I had arrived, told her he had cleared me for my infusion.  She got the apple juice and two ibuprofen tablets I had requested.  With that complete, she placed the supplies to access my port on my right side of the table.  Asked if she was going to check my blood pressure, so I could finally cross my legs.  She had thought it was already done.  She got the equipment, took my blood pressure and temperature.  Now I got to cross my legs like normal.  Unbuttoned my shirt so she could clean the cream off my port.

I took my face mask and put it on.   Not sure why my body decided to try chewing on the face mask, but the nurse asked if it tasted good or something.  Hadn’t even realized what I was doing.  She pulled it out of my mouth and we both started laughing hysterically!  At least I made her day.  For the record, the masks don’t have any flavor to them.  She cleaned the site and sterilized the area before inserting the infusion needle.  Since I had let the cream on the needed time, didn’t even feel a thing.  There was a good blood flow coming from my port, she flushed saline down the port to remove the traces of my blood from my line.  Then she hooked me up to receive my Tysarbi dose.  She asked if I needed anything else.  Told her I brought all the supplies I needed with me like normal.

Began playing solitaire on my tablet, while eating a fruit and grain bar for a snack.  Washed it all down with the apple juice the nurse had given me.  After my snack was complete, read a werewolf romance book on my tablet.  Normally, prefer vampire love stories but this was a good read.  Went back to playing solitaire.   The infusion machine started beeping like it was done, but 9 out of 10 times it lies.  It was lying again.  Another nurse came and jiggled the line and quieted the machine.  She told me I still had about 15 minutes of dripping to go.  So went back to playing solitaire.

Finally, the machine started beeping again.  Was back to the first nurse.  Asked her if it was lying again.  Nope, I was actually finished with my bag of medicine.  She unhooked me from the machine, flushed my line with saline again.  Asked her to place my wheelchair where I could reach it, because I needed to use the restroom.  (Had already tried to reach it from the recliner they had put me in.  Have arms that are as short as the rest of me!)

She asked if I needed help wheeling over to the bathroom.  Told her the exercise would be good for me to move myself over on my own.  I get cramped up from sitting still for so long.  The bathrooms actually inside the infusion center are much better than the public ones in the building.  Was washing my hands after using the toilet and accidentally managed to spill a little of the soap on the container.  Was great soap, but it had the appearance of human snot.  Let the nurse know what was actually on the soap bottle, so it could be cleaned up.  Have a tendency to make bigger messes when I try to clean things up for myself, so I didn’t even attempt it.

Returned  to the recliner I was assigned to be in.  Went back to playing solitaire.  They set a timer when our infusions are complete so they can observe us for a full hour.  The hour drags by extremely slow, makes watching paint dry seem like an interesting adventure!  The timer went off, the nurse came over to push heparin down my port so it would remain viable for next time.  She took my blood pressure one last time.  I called my husband to let him know I was on my way out of the infusion center.  The nurse pushed me with my arms full of my bag, emergency inhaler, and my cell phone.  He was no where to be found.  The nurse took me out the door, I told her he was probably using the restroom.  Sure enough, just as she started walking away, he came out of the men’s bathroom.

He made the comment that she didn’t stay to talk with him like normal.  Let him know they were really short staffed today.  He took me out to where we had parked our car, and helped me get in to the front passenger seat.  Once I was safely out of my wheelchair, he took it and collapsed it to put in the back of our vehicle.  Traffic was behaving oddly (turns out there was an accident killing one of the workers at the new Viking’s stadium).  Took a few wrong turns to make it safely out of the area of the clinic.

Headache started on the right side of my head.  Ignored it like normal.  We made it back to our house.  Jason got my wheelchair out and brought it to my side of the car.  Had more strength from the infusion, but the pounding in head kept me a little slower than normal.  He put the my bag on my lap, put the other bag containing my urine bags on top, then he gave me my emergency inhaler and cell phone back.  He pushed me with all the crap on top up the walkway to the house.

My husband unlocked the house doors, took my bags and let me take myself in.  He let me start putting my stuff back where it all belonged.  Then he left me to get out of my shoes as he went to go get us a meal from the local Culver’s restaurant.  While he was gone, I grabbed a more comfortable pair of shorts and went into the bathroom to empty my urine bag.  With that complete, I removed the bag and put on my catheter plug.  Put the empty urine bag up on the shower chair, put on my comfortable shorts, then cleaned up from using the restroom.

Took my normal 3 PM medicines, since I missed getting to take them.  Our cat had barfed on my husband’s recliner while we were gone, so I cleaned that up.  Heard the animal getting sick in another room, so poured myself a glass of cranberry grape juice and put it on the kitchen table.  Then went in search of the mess I had heard being made.  It was right in front of my electric wheelchair by the back door.  Cleaned that up, and heard it get sick again!  This time it was in MY office!  Not in one place, but two.  Was coming to my wits end with the cat!  Got those messes cleaned up.  Was finally washing my hands when my husband made it home with our meals.

Cat vomit makes my husband lose the contents from his stomach.  That’s why I clean the messes up for him.  He put my meal on the table by the drink I had poured.  With a pounding headache, I began eating.  It was late enough by the time I finished, took my quarter to five pills.  noticed I had forgotten to put my anti tip bar back on my wheelchair.  Got that issue resolved.  My spouse went down to his man cave to play video games.  My headache and I switched the television to the right channel to receive the 5-o-clock news when it came on.

STILL HAVE POUNDING HEADACHE!!!

 

 

Interesting few days

It started with an appointment with a nurse from my neurologist’s office.  She was going over the results from my neuropsych testing back in June 2015.  Turns out they discovered I was color blind!  Knew that since I was in high school.  Am both depressed and anxious.  No surprise there, either.  The appointment cost my normal co-pay for a specialist of $50.  They also determined I had a spatial vision problem.  In English it means I have problems judging distances.  Learned that one a long time ago the hard way.  Putting a full glass of liquid on a flat surface like a table is a challenge for me.  Good thing I haven’t driven since before we moved into this state back in 2008.

So the Physician’s Assistant  prescribed Lexapro  5 MG once a day for the depression and anxiety.  The only side effect I’ve experienced so for (maybe) a migraine like head ache.  The reason I  said maybe is there was a pressure front moving through the area at the time.  Pressure fronts can trigger migraines in me.

After that was. over went downstairs for my normally scheduled infusion of Tysarbi.  While there, I asked the nurse if Tysarbi could be causing my case of Athlete’s foot.  She said it is possible since it lowers my immune system’s ability to fight off infections.

The next day my husband went downstairs to start our laundry, when my cell phone rang.  It was my father-in-law calling trying to get in touch with my husband.  He had been in a car accident while on his way back from a trip to the state of Texas.  He told me not to worry, he had just bruised his hand a little.  Told him I would have to hang up so that I could call my husband.  Called him and asked him to call his step-father who had been in an accident.  My husband got in contact with my father-in-law and agreed to meet him at the mechanic where the vehicle had been towed to.  We used to use the mechanic before we moved to our house.  He got the clothes in the wash then left.

Got a call from my husband when he arrived at the mechanic’s.  The vehicle will probably have to be totaled due to the damage.  His step-father had done a heck of a lot more damage to himself than he let on to me.  My husband took him to the urgent care clinic to have him looked over and get his hand X-rayed.  Then he contacted his mother to let her know where her husband was!  My husband grounded his step-farther from driving for a month.  When his mom arrived, she grounded her husband too.  Turns our he had broken his hand.  That is JUST a little more than a bruise in my opinion.

My husband came back home, then the company we purchased my husband’s motorcycle from came to tow the our motorcycle away because the brakes were no longer working properly.  I have still not had the chance to ride it with him yet!  He is not a happy camper with his motorcycle in the shop!

The next day, my husband had a chiropractors appointment in the morning.  He got his back adjusted then went grocery shopping for the week ahead.  It was around 3 PM by the time he got back home!  Once home, he got a call from the motorcycle repair shop letting him know the problem with his motorcycle was from a problem that had a recall out to be fixed by the manufacturer.

They weren’t authorized to do the recall work required.  They towed the motorcycle at their cost to a company in the area that could take care of the repair.  It will be fixed there then returned to the place we had bought it from for other repairs that we had requested they complete while they had it.  Brake light modulators for safety, both of us agreed was well worth the added investment!

My father-in-law is now resting safely at home with his wife and cat.  Our motorcycle is in a different repair shop than the one we purchased it from.  No clue when we will have it back.  And I still have NOT gotten to ride the machine, yet!  No clue why I miss it.