Tag Archives: disabled

Prompt for the Day: “Fearless Fantasies”

Some one near to the Daily Post group of Word Press released us of our darkest fears with today’s prompt of “Fearless Fantasies“.  Then they asked us two intriguing questions: “How would your life be different if you were incapable of feeling fear? Would your life be better or worse than it is now?”

My Biggest Fears

Am now severely claustrophobic.  Since my health requires I have regular (minimum of once a year) MRI’s, which means getting inside a loud tiny tube for way too long.  Currently require complete sedation to survive with out going insane!  Not only is it extremely stressing, it is outrageously priced!  The chance to not go through this fearful feeling would be an astounding release of pressure from my life!

My life would be utterly improved without the fear hanging over my head.  No more night mares of being trapped inside the tube while strapped down to the table.  No more trouble drifting off to sleep because of the upcoming testing needing to be completed.  There is supposed to be someone in the MRI center preforming the test while you are in the tube, why won’t the respond when you try to talk to them?

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: “Un/Faithful”

The sacrilegious people at the Daily Post division of Word Press created the prompt for today of “Un/Faithful”  Then they gave us a single additional instruction: “Tell us about the role that faith plays in your life — or doesn’t.”

My Faith

My parents forced me to attend and then be confirmed in the faith created and ran by the United Church of Christ.  In my opinion (by age eight) they were only interested in what money I could give them!  Was confirmed in the faith my eighth grade year in school.  Still hated going there to worship every Sunday.  Preferred to do my praying up in an old apple tree in our front yard.  That is where I read, had talks with God, you get the idea.  Was my private sanctuary.

Left home to attend college alone out-of-state.  Tried joining the local UCC, in that town.  They were not interested in letting college kids join their organization.   So I ended up going to another church with a friend I had already made there in college.  She took me to the local Methodist church.  They not only welcomed me, but let me join their adult choir, bell choirs, and made me feel welcome in their community!  We went on yearly outings where we helped the elderly and or other wise disabled people of the area winterize their homes.  Got pretty skilled at putting up window sealants (plastic coverings) on the lower windows.  Caroling trips happened year round as we visited various homes for the retired people in local towns.  Made may friends in that group of people!

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!

 

 

Optic Neuritis (AGAIN)!

Optic neuritis is one of the most common symptoms of multiple sclerosis. I hate it! The only worse multiple sclerosis symptom is the feeling of vertigo. Vertigo makes you want to throw up because you feel like you are on the wave riddled sea during a horrible storm. If I do not take motion sickness medicine, start vomiting uncontrollably from vertigo. With optic neuritis, I simply have to cover the affected eye with a patch and take three ibuprofen pills every four hours.  Sleep also helps rest my eyes, so I take a lot of naps while suffering from the optic problem.

Attack this Time…

Might have been caused by the fish oil supplement that my eye doctor suggested I start taking for the problem of dry eyes that I have been suffering from for years.  Started taking half the suggested dose on Tuesday morning with my regular breakfast (bottle said best if taken with a meal).  Just tried contacting the neurologist’s office, but they are closed (Christmas Eve right now).  So I will just send the office an email asking for advice.  At least I figured out the problem was going on fairly early, like right after it started!  Last time it took several days of headaches for me to catch on to the ongoing problem.

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 of the Day: “Fandom”

The over enthusiastic cheerleaders from the Daily Post group of Word Press submitted the prompt of “Fandom” to set our minds to work.  They asked a simple question followed by a few sentences-“Are you a sports fan? Tell us about fandom. If you’re not, tell us why not.  Sharing is caring.”

This B.S. again?

Thought the place I grew up in was the only group of idiotic people in the world that placed sports ahead of everything else!  What about basic education for young kids?  Simply helping the older people of our society would be too much of a sacrifice to ask of the general population.   We have to help take care of our returning soldiers from  their service in the military.  They give everything to protect our country, while we remain safely here at home.

Why not throw a huge party for the various people who serve our towns every day like E.M.T.’s, firefighters and police officers?  They deserve a lot more respect than an athlete who just does the same thing repeatedly each day.  Police officers around here have been known to join in an ongoing game with kids while they wait for the school bus to arrive.  Each of the officers joined the two teams of kids in playing a good game of early morning football.  Both the two officers and all the kids had a great clean game until the bus arrived and took the kids off to school.  Why are simple events like this not spotlighted more?

 

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: “Safety First”

The boy/girl scout minded people of the Daily Post division of Word Press chose the prompt for today of “Safety First“.  The followed by giving us a single statement “Share the story of a time you felt unsafe.”

Being confined to a wheelchair

Leaves me constantly feeling unsafe.  Am confined due to a disease commonly known as multiple sclerosis.  Was the first in my family to be diagnosed.  Once I received the diagnoses, all my female relatives on my mother’s side of the family got an answer to their on going health problems as well.  Apparently, the idiot doctors in southern Illinois weren’t familiar with the illness.  My mom, her sister, my two female cousins, all have it.  We suspect my grandmother suffered from it as well, but she was dying from smoking induced cancers so her diagnoses was not pursued.  My great grandmother may have had it, since it was not a known disease at her time.  She died from something that sounded like she had an untreated case of the evil disease to me!

Have let the local emergency services in the area know I am stuck in a wheelchair and have a ramp located at the back door of our house.  Also informed them of my severe allergies, like the anaphylactic shock I go into when stung by wasps or bees.

Am also claustrophobic which causes problems when I am forced to have a MRI to check on the damage from the disease.  Hate getting into that stupid tiny tube where they bombard my body with beams from an electromagnet to observe the condition of my spine and brain.

Have a fear of falling, since I get waves of feeling like I am out in the middle of the ocean while I am sitting still.  Another symptom of the disease.  Have managed to actually fall off an exam table at a doctor’s office while laying on my back.  My husband claims I passed out, but I always thought you fell backwards when you pass out!

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: “Take Care”

The concerned people from the Daily Post division of Word Press  cared enough to select the prompt of “Take Care” to nurture out writing further.  They also asked two questions: “When you’re unwell, do you allow others to take care of you, or do you prefer to soldier on alone? What does it take for you to ask for help?”

Personally,

When I am feeling ill, I like to be left alone.  Peace and quiet are always a wanted environment.  My husband becomes physically ill at the sight of vomit, whether from me or our cat.  It is best to send him to work or downstairs so that I am free to rid myself of what ever is making me feel bad.  He makes sure I have plenty of fluids available to drink, and makes whatever I think my stomach will keep down while I am sick.

The only time I generally ask for assistance

Is when I am too weak to successfully manage to use my wheelchair alone.  In that case I am probably running an extremely high fever and will need to get professional medical help, whether I want to visit a doctor or not!

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: “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 “Because the Night”

The wide awake people of the Daily Press group of Word Press came up with the following prompt of “Because the Night” for our writing inspiration for today. They also asked us the following three questions: “Are you a night owl or are you the early bird? What’s your most productive time of day? When do you do your best work?”

Was a morning person growing up by force. Had to be wide awake to travel to the main farm to help with the daily milking of our family’s dairy herd. Once I left for college, became a night owl. Had never been allowed to stay up late, due to work.

While in college starting my sophomore year I worked while attending school full time. Sleep became whenever I got time for it. Managed to short myself on sleep so bad, I came down with the kissing disease (more commonly known as mono or Mononucleosis). Lasted forever it seemed, but I still had to attend all my classes and work. Was a walking zombie for months!

Got an internship with the headquarters of a country wide dairy company. Cut my work schedule down to two jobs while still attending school full time. The internship took me on many trips throughout the Midwest. Made wonderful contacts in my field of choice, network engineering. The field does not encourage getting too much sleep. Tend to be on call twenty four hours a day. Upon starting my senior year, they offered me a full time position with the company, if I agreed to cut my other jobs from my daily schedule. So all I had was work and finishing my college classes on my schedule.

Upon graduating, I married my husband the next day. Was given an entire week off to get our honeymoon in and get the legal paper work taken care of.

After living together as a married couple for a year, woke my husband up because was suffering from a feeling of the room moving constantly. Any movement mad me vomit several times. After several hours of being sick had lost everything I had eaten in my entire life by puking it up in the toilet. He had me get dressed, because he made a flying trip to the hospital. They gave me an injection of what basically was Dramamine and sent me home with a prescription for it if I continued to have problems.

Started to loose my ability to walk, because my legs would give out. Not being coordinated, kept tripping over a cane when I gave that option a try. Went to see a doctor and he wrote me a prescription for a wheelchair, because I had already tried using a cane. Went to a store that sold wheelchairs and they had one from last year’s inventory in my size on sale. We purchased it and took it home. My boss told me to take the day off to learn how to use it. (They were getting my workstation altered so I would still be able to preform my work!) My husband and I went to a mall that was not normally crowded to learn the in’s and out’s of being wheelchair bound. My hands were getting sore from wheeling myself around. Met a handicapped gentleman there that told me how he dealt with the problem. I needed to get gloves, he uses weight lifting gloves. So we went in search of the gloves he had described to me. The gloves were very bulky and not very professional looking. There was a leather store in the mall. There we found a couple of pairs in my size. Black finger-less leather gloves I could wear anywhere I needed to go. We were both pretty tired after a long day of learning the ropes.

Had been seeing a chiropractor since college due to my neck and back getting out of alignment. He began to notice that I was not responding as well to his adjustments anymore. He thought I might have a slipped disk or something, so he sent me to have an MRI preformed. Lets just say, I do not like being closed up in a noisy tube to be pulled out of the tube t have a nurse approach me with a weird shaped needle. With my head strapped down to the table I tried jumping off the table sideways to try to escape! That move made them have to consider starting the whole process over, I just wanted out NOW!

A few days later, went to my scheduled chiropractor’s appointment to find an empty waiting room. Was normally full of people, so I checked in and paid for my appointment like normal. Was immediately called into one of the exam rooms. The nurse told me I didn’t need to take my shoes and stuff off like normal. The chiropractor would be in to speak with me shortly. When he came in, he told me I needed to have another MRI. Because I did not allow them to inject me with the medicine that would allow them to see the contrast in my spine area. Without the contrast information all he knew for sure was he was no longer able to help, because I had either spinal cancer or Multiple Sclerosis. So he got me another MRI scheduled and a prescription of Valium to take so I would sleep through it. One problem, the medicine had absolutely no effect on me. Was not a good experience, but they put the IV in before I went into the tube. So other than screaming the entire time I was closed up in the tube, was able to get the MRI with contrast completed. My husband took me home, was not talking because I had lost my voice from screaming.

Went back to the neurologist to be told that I did not have the death sentence of spinal cancer, but simply relapsing-remitting multiple sclerosis. He didn’t understand why I started crying. Had been told all my life I was nuts, because my body would experience strange symptoms like numbness or a sunburn like feeling when I had no sun burn. He gave me information on two different treatment options I needed to read and consider before my next appointment. First option was a drug called Betaseron, the second option was a once a week injection of a medicine named Avonex. Considering my fear of needles, once a week was the best option to me!

Now, my sleep started being sporadic due to worry. Was lucky to get any sleep at all. The dairy company I was working for started to experience problems due to lack of money to support it’s customers. People were getting laid off. My appointment with my neurologist set up my first injection of Avonex to be done at the neurologist’s office. Made me sicker than a dog. The nurse trained both me ans Jason on how to administer the shots. We were never successful at getting the shots done.

Got a job offer in a different state. Took the job since it was a better paid network engineering job than the one I had. Sleep became more erratic due to strange noises from the nearby airport. At least my work schedule became more stable. Started reverting back to waking up early in the morning each morning!

Am at my best first thing in the morning each day. So am a morning person after all!

Prompt for the Day: “Strike a Chord”

The musically interested people at the Daily Press division of Word Press chose “Strike a Chord” for the writing prompt for today.  They asked a two questions, followed by a statement to give us a starting direction-“Do you play an instrument? Is there a musical instrument whose sound you find particularly pleasing? Tell us a story about your experience or relationship with an instrument of your choice.”

Inherited 3 Clarinets

The first was from my mother.  Her parents had given it to her while she was in grade school.  When I started fourth grade, she let me learn how to play it in the local grade school band.  Ended up competing in several contests with the instrument.  When I moved into junior high school, kept playing the B flat clarinet.  Took up the school’s bass clarinet, wasn’t much different.  Started having problems with the dexterity of my hands due to multiple sclerosis, so started playing the drums which required less coordination from my hands.

Took a couple of years off from band due to problems going on in the school system.   My junior and senior year, started playing my mom’s saxophone.  Since we didn’t have a good sax player in the district, it was either me or nothing!

Still have my mom’s clarinet in my possession.  Inherited another two antique clarinets from my great grandfather.  He used to play them in a local German dance band.  One was an Albert system B flat the other was a E flat of the same system.  I loved playing the older system, since the trills were easier for me to perform with that design!

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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- “This Is Your Life”

A gentleman from the Daily Press suggested today’s prompt of “This Is Your Life“.  Then they added a question followed by a statement:”If you could read a book containing all that has happened and will ever happen in your life, would you? If you choose to read it, you must read it cover to cover. ”

Considering How Screwed Up My Life Has been This Far…

Less than a year after marrying the man of my dreams, was devastated by a diagnoses of multiple  sclerosis.  He stood by me even after the diagnoses was confirmed.  Has continued to help me survive with it for 20 years!

Has not been all roses and rainbows, though.  We started out living in Missouri where we both had decent enough jobs.  Both were not profitable, had to pay off my student loans after all!  Got a job offer that required us to move to upper Illinois.  Was sort of my dream job as a network engineer.  Just think, I would be in charge of telling data where to go and how to get there for a living!  Paid really well, too.

We did not want to continue living in the Chicago-metro area for the rest of our lives, though.  Got myself transferred to a different branch of the company located in the Denver, Colorado metro area.  Got an appointment with a neurologist there.  He got me started on Avonex to help counteract the disease from taking away my abilities to live.

Got to go skiing for the first time with my husband our first Christmas there.  He was used to cross country skiing, down hill skiing wasn’t that different.  I was a green grass ski bunny in my skiing ignorance.  After living for a year in a crappy apartment there, we tried buying an older home in Aurora.

Started making improvements to the house little by little.  Invested in a bunch of Craftsman tools.  Power tools were my thing.  Drooled over them every time I entered the Sears store.  Contracted to get our windows replaced at a discount by allowing the company to advertise the improvements on our front yard.  There was no air conditioning in the house, so we had a swamp cooler installed on the roof.  With two mortgages on the house, things started feeling tight.

Made friends with the neighbors around the cul-de-sac where we lived.  My employer was starting to have problems with finances.  I found another networking company to work for in the area.  The new company didn’t keep the promises they made during my interview.  I did not want to have to travel more than two hours each way to get to and from my job sites.  They wanted my to work far south of Colorado Springs on a contract they had secured there.  I refused.  They had me do busy work, so I started looking for a new job on the side.

Found a job at a Rhythms Netconnections as a layer three engineer.  (That means I told data where to go and how to get there!)  Had great fun working on the site.  Noticed that things were starting to go down hill as far as the company was concerned after a few months working there.  Had been investing in the company’s stocks by having a portion of my salary being diverted to the company.  We were not allowed to withdraw our stocks when we needed to be able to have access to our money.

They started limiting the services we provided to our customers by changing what networking options were available.  We had to change our layer three customers over to a crappier layer two service.  Instead of controlling routing, the customer’s services to a site were either on or off.  This was no longer my dream job.  I was working on their third shift team.  We were told the entire company had to report at 9 AM one morning regardless of whether we were scheduled to work that day or not.

We were divided into two groups.  The group I was in was told to go over to the other side of the building.  We waited there for around a half hour before we were told that our services were no longer needed with this company.  They gave us papers explaining our severance packages, and then we were escorted out of the building.

Went home to file for unemployment for the first time in my life.  Had two mortgages with limited income coming in from my severance package.  Started looking for a job.  There were none to be found in my field of work.  After more than a year of searching, landed a contract job for the Department of Homeland Security about August of 2003.  Did not have to report to the site until later that year.

Once we started working full time on site, managed to get my shift changed to third shift since that was what my husband was working at the time.  Never did actually obtain the clearance that was needed to give me access to the country’s routers due to my lack of clearance.  Somehow manage to become the third shift manager.  (Remember, we are talking about our national security?)  Still had no clearance, but was in charge!

My husband decided he wanted to purchase a bar back in Wisconsin.  So I resigned my position on contract.  He found us a house there to purchase.  I started packing our home up the best I could.  We contracted a moving company to relocate our belongings for us.  The moving truck came and took everything with them and left us our sleeping bags and a suitcase of our clothes.

We said good bye to our neighbors and drove away to resettle in WI.  When we got to our new house, it was not what I was expecting.  Much smaller and on a main highway!  December is not a pleasant time to move to WI.  Am very allergic to smoke.  The house was heated by a wood burning  heater in the basement.  No one lived close by with which to talk to on a day to day basis.  Got really lonely out there.  The woods had wolves that lived in them and frequently came up to our back door.  There was a bear that liked to scratch itself on a tree near the house.

There was a herd of deer that would feed in our back yard area.  Wild life was not scarce in our area.  Bobcats would climb on top of the garage.  Had a bobcat kitten come up to the front window once.

Since my income no longer was coming in, had to take a job at the only place hiring in the area.  Working there caused me to try to commit suicide.  Called a friend to say good bye one last time.  She got the state police to knock on my front door.  They took me away to a hospital.

After several days was released from the hospital to my husband.  We filed for bankruptcy due to all the bills that had been accumulated.  After that, we relocated to southern Illinois where my deceased grandparents used to live.  Was not a good retreat.  Felt like we were crawling back with our tails between our legs in shame.

My husband was able to secure work in a neighboring town in the retail business.  He started rebuilding our finances.  Applied for Medicare Disability Income, due to the fact I was no longer able to walk.  After a little over a year we managed to move back to where we first met in Missouri.  My income from medicare started to be dependable.

He had transferred his position where he worked in IL to a different site in MO.  The MO site didn’t suite his style, so he transferred to a different section of town’s site.  That one worked a little better for him.   Got an electric wheelchair through medicare.  He traded in my car to get a van so we could move my wheelchair if we needed to change our current location.

He got fed up with MO, so he wanted to relocate to Minnesota to be closer to his parents.  They claimed to have found a handicap accessible apartment complex for us to live in.  (Have no idea where they got the impression it was accessible from!)  Never been in a more inaccessible building in my life!

Tried moving down to a lower floor, still inaccessible.  Was stuck living there for close to seven long drawn out years.  Once we had accumulated enough money for a decent down payment on a house, we started looking.  In August of 2004, we started purchasing an older home in St. Paul.  There are still many things that need to be improved, but we will get it done eventually!

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!

FREE electronic How-To Directions

Down load an  Adobe Reader file entitled “How to create a sales presentation that closes deals” by clicking this link How to create presentation.

‪#‎30DaysOfContent‬