Battling A Chronic Disease, Such As MS,While Living In A Rural Area.

It may just be me, but people who live in or close to an urban area have a lot of advantages when battling a chronic disease such as Multiple Sclerosis.  These people have access to hospitals equipped with the latest technology and access to the newest research and treatments.  They may be able to participate in support groups with people facing the same battle and enduring similar challenges which they do.  The person may also have the opportunity to participate in clinical trails.

Unfortunately, I reside in the quickly coming defunct coalfields of Southern West Virginia in a small town divided by a river known as the Tug River.There are 2 hospitals in my area, both very small.  The hospital on the West Virginia side of the river has only 76 beds and was almost closed and converted to a drug treatment facility a couple years back.  The hospital on the Kentucky side of the river has approximately 148 beds.  Like I said, small hospitals.  They are tiny compared to big city standards.  

When it was first suspected I had Multiple Sclerosis, I was referred to a neurologist who practiced  in a WV city two and half hours away.  It was there I had the lumbar puncture or spinal tap which lead to my definitive diagnosis of MS.  However, I never could obtain the results of the spinal tap or any other results of tests performed from this Doctor.  I would have to come back, go to my regular Doctor, sign a Release of Information form.  They would fax this form to the neurologist office and they would fax back any results.

It was my general practitioner and his nurse practitioner who delivered the news that yes, you have Multiple Sclerosis.  My neurologist didn’t get around to giving me this news until almost 2 months after the fact which is why, with the help of a colleague and friend, I quickly located a new Doctor.  

My new neurologist was located in a city of Kentucky which was three and half hours away from my hometown.  Yes, if you live in a rural area such as the one where I reside and you are diagnosed with something like Multiple Sclerosis, you will have to travel to find the best treatment.  

I liked my new neurologist right away.  He seemed very nice, personable and, most important of all, knowledgeable.  Liking your doctor is very important especially if you are battling a chronic disease.  You are entering into a possible long term professional relationship with this person.  You have to be able to feel you can trust them, have confidence in their ability to treat you and feel comfortable enough to be able to discuss anything about your health with them.  The relationship with your Doctor may be the longest relationship you ever have in your life.  The relationship between a patient and their Doctor can last longer than most marriages now days.

Unfortunately, this was not to be in the cards with this Doctor and me.  He was considering retiring in the near future and he advised me to find a doctor who would be able to follow my case long term.  The type of doctor he recommended was an MS specialist.

  “A what?”  I remembered asking, looking from the Doctor to my husband then back again.  At this point, I had been a nurse for almost 18 years.  I also have an older sister who has been diagnosed with MS.  However I had never heard of an MS specialist.  I operated under the assumption there were neurologist which treated neurological disorders such as epilepsy, Parkinson and Multiple Sclerosis and neurosurgeons who performed brain and nerve surgery.  I had no idea they further specialized.  To be honest, I had never given it much thought until that very moment.  

Well, my good neurologist really let me down at this point.  The only MS specialist he knew of in the same city was not accepting new patients.  He started recommending that we look farther north because MS was most prevalent in colder climates.  He recommended to us we try to get an appointment at John Hopkins University or, maybe, Cleveland Clinic.  In fact, he preceded to set me up an appointment at Cleveland Clinic.  

Of course, I went.  A Doctor, who looked like he was barely old enough to be in high school, came in and looked over the medical records I had brought, asked a few questions and watched me walk down a hall before agreeing yes, you have MS.  He shook my hand then my husbands’, wished us luck and walked back out of the room.  We had made a 6 hour car trip for what amounted to a 20 minute appointment just to be told what we already knew.  

When we returned to my regular neurologist and he seemed genuinely surprised that was all they did.  He started suggesting places even farther away such as John Hopkins University and one hospital in Boston Massachusetts.  I just looked at him.  More travel for what could amount as just another 20 minute appointment?  Just so they can tell me what I already knew? 

I appreciate my doctor was trying to insure I got the best treatment available.  However, traveling that far was not really an option at that time.  I had a son at home who was in school and nobody really willing to keep him while I traveled, possibly on a regular basis, to all these different places.  I was already being forced to schedule my appointments around his school schedule 

Had I decided to go through with this, I would have been forced to try to get appointments during my sons ‘ school breaks and, since these places were too far to make the trip in a car, I would have had to shell out money for plane tickets, hotel rooms and meals at restaurants.  Since I am not a rich woman, money was another obstacle for me.

As luck would have it, this doctor referred me to another doctor in the same city as him for treatment of a seizure disorder.  That is right, a seizure specialist.  I didn’t know those existed either.  I had already given up on finding a MS specialist anywhere near me but my husband, always the optimist, asked him if he knew any.  He did and referred me to the MS specialist I still see today.  And get this.  My MS specialist is in the same city as the neurologist I was seeing.  He was just affiliated with a different hospital.  

I would love to say since then my treatment for my MS has been spot on and perfect but that would be a lie.  My new Doctor is still three and half hours away.  It is not like I could simply drop by the office.  Most of the time,if I have any concerns, new symptoms or worsening of symptoms related to my MS, I have to call.  Sometimes when I call, I get to talk to a live person but most of the time, I leave detailed messages.  Sometimes they return my calls but, more often than not, they don’t.  But, since it is not like it is going to be raining down MS specialists where I live anytime soon, it will have to do.  

So, tell me your opinion.  Do you agree it is harder for a person living in a rural area to obtain access to specialized and optimum healthcare or is it this hard for everyone?  I will be very curious to  read some of the comments.  ūüėĀ Bye for now.

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Yes, it has been a while

Late last spring, I was so excited to enter into the blogging world.  This will be fun.  I told myself.  This is easy I said as the words from my first blog post poured onto the page.  I love this!  I thought as I officially posted my first blog entry.

Not so fast.  This blogging thing is a lot of work and there is so much to learn.  I read and began to follow other blogs.  I couldn’t help but notice all the amazing photography and  I compared my blog posts to the ones I was reading and mine came up seriously lacking.

Maybe blogging isn’t for me.  I told myself and basically abandoned my blog after only posting 4 times.  I guess I got a little intimidated.   However, I couldn’t put it down.  I found myself reading and researching anything I could find about creating and maintaining your own blog.  All those articles make it sound so simple.  

So, I decided to try again.  Maybe, I gave up too early.  I am still a “newbie” at all things pertaining to a blog.  I will still get intimidated but this time I might find the courage to just keep posting.

War with MS is the title of my blog and, just as the title implies, I suffer from Multiple Sclerosis and I do daily battle with this disease.  Just because I have MS, I am not an expert on everything to do with MS.  No, I learn something new about this disease almost every day.  My blog is about my battle with MS.  It is also about my life, my family and friends.  Basically, it is about me living my life the best I can, in spite of having a chronic disease.  That is all I want.

Daily Prompt: Fifty

via Daily Prompt: Fifty

I just have 52 more days left of my forties. ¬†I know this for a fact because I have counted. ¬†This should tell you how much turning fifty years old is bothering me. ¬†On October 13, 2016, I will have been on this earth a half of a century. ¬†Let’s just let this sink in for a minute. ¬†I know, it is hard, isn’t it? ¬†I have been trying¬†to wrap my mind around the fact I was turning fifty since my 49th birthday last year.

To be honest, I have never liked milestone birthdays. ¬†They always make me a little sad, because I always feel like I am leaving something behind. ¬†I refused to celebrate my 20th birthday because, even though the teen years were traumatic for me, I was sad my teen years were over. ¬†I practically took to my bed when I turned 30 because, when you are 20, you are still considered young. ¬†People in their 20s’ are expected to make mistakes and fumble around while they try to figure out how this life works and how to be an adult. ¬†However, by the time a person reaches the age of 30, the learning curve is over and the person is expected to suddenly morph into a confident, competent adult who has their life figured out. ¬†I just wasn’t ready to turn thirty. Even though I had a career and was in a great relationship, I didn’t feel like I had anything figured out. ¬†I needed another year or two of my 20s.

Strangely enough, turning 40 didn’t bother me that much. ¬†I felt like I was finally the confident, competent adult I was supposed to be when I was thirty. ¬†I thought my future was bright but, then, my battle with Multiple Sclerosis and seizures worsened. ¬†My forties haven’t been the walk in the park I thought they would be. ¬†My mother died when I was 41. ¬†The very next year, my MS became worse, and I started having seizures again. ¬†I hadn’t had a seizure in 14 years but, suddenly, I was having at least one seizure every two weeks.

After this started, my 4os were filled with one Doctor’s appointment after another. ¬†Each time I went they prescribed new medicines, new tests, physical therapy and if they didn’t know what to do, they referred me to yet another Doctor. ¬†Maybe this is why turning 50 is bothering me so bad. ¬†I feel like I got cheated out of my forties. ¬†We have all heard the saying ” forty is the new thirty”. ¬†Well, for me, forty was the new ninety. I want my forties which are supposed to feel like the new thirties. ¬†I feel cheated.

It didn’t help for me to read the article series which is being published in the Washington post detailing how the death rate for women between the ages of 25-65 is increasing. ¬†The death rate for all other age groups and for the opposite sex is decreasing but the death rate for women in my age group is increasing. ¬†As I sat and read one part of the series, I started thinking of all my female friends and female acquaintances who have passed. ¬†Some were older than me but not by much. ¬†Some were even younger than me. ¬†Then, I started thinking about friends I know who are battling cancer or other life-threatening diseases. ¬†Two of those friends are younger than me. ¬†It is scary.

I don’t mean for this post to be morbid but this has been on my mind. ¬†It was on my mind even before I read the Washington post series. ¬†It is hard for it not to be. ¬†When I was a little girl, I always wondered why the older people in my life would read the obituaries in the newspaper first. ¬†They would turn to the page which contained the obituaries, even before they read the headlines on the front page. ¬†I always thought it was strange but now, I find myself doing the same thing. ¬†Maybe, it is natural for a person to become a little morbid as we get older. ¬†I mean, I am a realist. ¬†My Dad died on his 66th birthday. ¬†My mom was 69 when she passed. ¬†When my Dad celebrated his 33rd birthday, his life was already half over. ¬†Because neither of my parents lived to be in their 70s’ or 80’s and I am already having health problems, I probably was not gifted with the longevity gene.

But, there is nothing I can do about it.  Unless I die in the next 52 days, I will turn 50.  There is nothing I can do to change this fact.  The only thing I can do is continue to live my life.  None of us truly know what the future holds.  I just have to try to live the best life I can possibly live.  I need to remain as active as possible for as long as possible, try to keep a good attitude, and be as good a person as I can be.  I need to remember to cherish every day of my life.  I need to spend time with family and friends.  I need to laugh often and love even harder.  If I do these things, maybe my fifties will end up being the best decade of my life.  Just, maybe, my fifties might be the new forty.

 

So, what is Multiple Sclerosis

I will never forget the day I was told I had MS.¬† I was at home, still lying in the bed, when the telephone rung.¬† My husband answered and then handed the phone off to me.¬† “It is your Doctors’ office.”¬† he whispered as I took the receiver from him.¬† With more than a little trepidation, I took the receiver from him.¬† I knew they were probably calling to give me the results of the MRI I had done the previous week, but I didn’t know what those results would be.¬† Was it a tumor, an aneurysm, brain cancer?¬† Surely, if it was something like cancer, they wouldn’t just call me up and give me news like that over the phone, would they?¬† ¬†My mind was going a 100 miles a minute.¬† Worse yet, what if the test didn’t show anything and all of these maddening, vague symptoms would be just a figment of my imagination.¬† One of the Doctors, I was seeing at this time, had hinted as much, bringing up the fact my Mother had passed away the year before.

“Maybe your symptoms are grief related?”¬† The doctor suggested

I answer the phone, by saying, “Hello, this is Melissa”¬† in the brightest voice I could manage.¬† I was relieved when the voice on the other line was one of my oldest¬†friends who worked as a nurse practitioner in¬†my Doctor’s office.¬† Maybe Doc thought it would cushion the blow if I heard it from someone I knew.

“Missie,” my¬†friend said, in a very professional voice, “We have the results of your MRI.¬† Your MRI shows you have Multiple Sclerosis.¬† It shows multiple lesions on your brain”

She said some more things after that but, frankly, I had stopped listening after she said Multiple Sclerosis.¬† This is going to sound strange to some but I felt relief flood over my body.¬† The relief was not because I was glad I had MS, because trust me when I say, I am not.¬† No, the relief was because they found something.¬† All my symptoms weren’t just all in my head or related to the grief I was feeling after my mother’s death.¬† I actually had a diagnosis.¬† I had a name for the demon I was up against and the demons’ name¬†was Multiple Sclerosis.

I returned back to work.¬† My co-workers and friends, who had been following my latest health battle and knew about my tests, asked me if I had any results.¬† I was very upfront about the fact I had been diagnosed with MS.¬†¬†It is my understanding some people aren’t.¬† The reactions I got were kind of mixed.¬† One guy I worked with admitted he also had MS.¬† He gave me a lot of helpful advice on what to expect, the medications,¬†Doctors and what have you.¬† The others, well, their reactions, at times, weren’t so helpful.¬† Some of the other peoples’ reactions ranged from, “Oh is that all.¬† You got lucky.¬† to “May God have mercy on your soul.”¬† A lot of these same people claimed to be related to¬†or know someone who had Multiple Sclerosis.

In all of this, with the exception of the co-worker who suffered from MS too, I was surprised at how little a lot of these people offering advice and encouragement knew about Multiple Sclerosis.¬† I was also surprised by how little I, as a nurse, knew about Multiple Sclerosis.¬† I mean, in my nursing career, I had taken care of people with MS.¬† However, they were¬†admitted with¬†other problems, such as chest pain, infection, preop for surgery.¬†¬† So the reason they were admitted was the primary diagnosis and Multiple Sclerosis would be the secondary to that.¬† We would pay more attention to treating them for their primary complaint and, only address the MS if they were having problems.¬† This might mean, if the person had problems with their gait and walking, we would note them as “Fall Risk” on the careplan and take appropriate steps to prevent any falls.¬† Sad, but true.

Anyway, I believe knowledge is power so I set out to learn everything I could about this disease. You must study your enemy, learn everything about them before engaging them into a battle.  Since I also have an older sister with MS, I started with her.  I peppered her with so many questions during the first few months after my diagnosis, I think I almost drove her around the bend.  I asked my doctor, my new neurologist, my nurse friends and the guy, who also had been diagnosed MS at work, all the questions I could think of.  I also started searching the internet and reading any book or magazine article I could find on the subject.  A few good internet sites I found are the National Multiple Sclerosis society or nationalmssociety.org and WebMD.  The website for Cleveland Clinic and John Hopkins also has a lot of information about Multiple Sclerosis.

What I have found, from all my research, is in MS, the persons’ immune system actually attacks the central nervous system of their body.¬† The central nervous system includes the brain, the spinal cord and the optic nerves of the eyes.¬†¬†The immune systems attacks the protective coating of the nerves known as myelin or myelin sheath, leaving the nerve exposed, like a naked wire.¬† The body then tries to correct the damage it¬†has caused¬†by building scar tissue around the exposed nerve.¬† The¬†build up of scar tissue begins to interfere with the transmission of nerve impulses which causes the person’s symptoms.¬† The damage to the nervous system can be seen on an MRI and are referred to as lesions. These lesions can occur anywhere in the central nervous system.

According the National MS Society’s website, there are 4 types of MS:

  1. Clinically isolated syndrome- the person has had one episode of MS like symptoms.  If the person also has MS like lesions on the brain, they are believed to be highly likely to go on and develop the disease
  2. Relapsing Remittance-¬† The most common form affecting over 80% of the people diagnosed with MS.¬† It is characterized by periods of relapse, where the person’s symptoms become worse or they may develop new symptoms.¬† These are followed by periods of Remission where the persons’ symptoms may completely disappear or lesson in severity.¬† The persons’ symptoms depend on where the lesions are located and is caused by existing lesions becoming active again or the person developing new lesions.¬† Each relapse a person has carries the risk of increasing loss of function and disability.
  3. Primary Progressive MS-¬† In this type of MS, they don’t have relapses or they don’t have as many relapses.¬† They is just a steady decline in neurological function and loss of function.
  4. Secondary Progressive MS-¬† Anyone diagnosed with relapsing remittance is at risk for developing secondary progressive.¬† It usually occurs 15-20 years after initial diagnosis.¬† The relapses slow down or stop occurring all together.¬† When the relapses do occur, they seem to last longer and there doesn’t seem to complete healing.¬† There is a decline in the persons’ level of function.

 

Web MD also lists 4 types but instead of listing the clinically isolated syndrome, they list relapsing remittance, secondary progressive and then divide the progressive type of MS into two categories- the type that doesn’t have relapses.¬† Whatever type you have, there is way more hope if you are diagnosed MS now, then if you were diagnosed even 30 years ago.¬† If the person has RRMS, there are drugs on the market now to help the person from relapsing which helps the disease from progressing.¬† These same¬†drugs doesn’t really work for as well for progressive because they work to control the relapses.¬† People with the progressive type don’t really have relapses.¬† However, research is being done and there is hope of new drugs and treatments for progressive MS , as well as hope for a cure of this disease and a way to fix the damage it has done to the person’s body.¬† And, oh before anyone comments about stem cell therapy, stem cell therapy is a treatment, not a cure.¬† I have looked in to it.¬† It cost 100.000 dollars, my insurance will not pay and it does not stop the Immune system from attacking the persons’ central nervous system.¬† As of today, there is no cure.

Well, this post has went on long enough.¬† I hope this has helped more¬†people to understand a little about what Multiple Sclerosis is.¬†Note:¬† I am¬†not a doctor.¬†¬†I am a nurse.¬† ¬† I don’t think I know as much as a¬†doctor.¬† I hope it didn’t come off that way. Just passing along what I have learned so far.¬†#WhatIsMS, #Preparingforbattle

Please comment below.  I hope you like it.

 

 

20 Unknown Facts About Me

1.  I once got paid to play a horse in  a Hanna Barbara show at the mall

2.  I love to dance

3.  I wanted to grow up to be a police detective when I was a little girl

4.  When I saw the first “Friday the 13th” movie, it scared me so bad, I didn’t sleep my lights off until I was out of college. No lie

5.  I have visited 48 of the 50 states

6.  I am a cat person

7.  I don’t like roses.  Roses are for funerals

8.  I once made a Dr. practically fall out of his chair when I told him how much Dt. Pepsi I drink a day.

9.  I am terrified of frogs

10.  I am also not to crazy about turtles, spiders or snakes.

11.  I went on my first diet when I was 7 years old

12.  I read the entire “Harry Potter” series in 2 weeks

13.  I once called into work because my dog died.  

14.  I had a nursing license before I had a drivers license.

15.  I will not eat liver

16.  When I was a little girl, I used to drink buttermilk.

17.  I love Ancestry.com

18.  I was a blonde until I was about 5

19.  I am addicted to reality t.v.

20.  I like to write short stories.  

Going Into Battle

Hello,

My name is Melissa. Most of my family and friends know me as Missie.   I am married and I have one son, who  is 16. I have lived my whole life in a small little town, nestled in the Appalachian mountains in Southern WV known as Williamson WV.  Yes, this is the same small WV town featured on the news because Presidential candidate, Hillary Clinton, paid the town a visit on her quest to snag the top office in the land. The heart of the trillion dollar coalfield.   However, my blog is not about that

My blog will be about a battle.  My battle with a chronic disease known as Multiple Sclerosis. You see, I was once a Registered Nurse.  I spent many years of my life taking care and seeing to other peoples needs.  It gave me a sense of fulfillment and a purpose in this life.  I am proud to be a nurse.  I did my best for every patient or person I met along the way.

However, now I find myself on the other side of the coin.¬† Due to my diagnosis of MS and also a seizure disorder, I had to give up my career as a nurse in 2009.¬† I will admit I floundered for a while.¬† Being an RN was as much a part of my identity as my own name.¬† I didn’t expect anything like this to happen to me, but it did.¬† I have been forced to create a new identity.

It is out of frustration that I begin this blog.  It is also out of a realization.  I have spent most of the last few years going from one doctor to the next, hoping they will be able to fix what is wrong with me.  The doctors ordered me medication.  They gave me advice but I have continued to lose ground.  I have felt sometimes like they just do not care.  After all, it is not them fighting this disease, they were getting their money from the insurance.

However, I have now had an epiphany.¬† I can’t depend on anybody else to fight this disease and its effects on my life but me.¬† So my blog is going to be about changing the way I fight this battle.¬† I am not going to let this disease win.¬† There are things I can do such as overhauling my diet, getting rid of food with chemicals and preservatives.¬†¬† I¬†can begin an eating style and exercise program to rid my body of the excess weight and strengthen it to¬†hopefully slow down the damage that is happening to my body.¬†¬†¬†I cannot depend on anybody but¬†God and myself to fight this battle.¬†¬†It is my battle to fight.

My blog  will be about this battle and the changes.  By keeping a blog, maybe it will make me more accountable and the changes will stick for the rest of my life.   In the end, it may not change anything but I plan on giving it all I have got.  I also hope my blog will serve as an inspiration for people  battling, not just MS, but all chronic diseases.