Tag Archives: Avonex

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- “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!

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