Tag Archives: anniversary

Celebrating (?) My MS-iversary

15 Wednesday Oct 2014

Posted by in Daily Life

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On October 15th, 2013 I read my thoracic MRI report: “findings most indicative of multiple sclerosis with an enhancing active demyelinating plaque.”  I still remember sitting in the chair at my parent’s house.  I read it and read it again.  I cried.   This day is seared in my memory as the diagnosis day although I didn’t receive the official call from the neurology office until the 16th.

So much has changed over the last year.  I’ve read a ton.  I’ve absorbed as much information about MS as my brain could seem to take.  I’ve struggled through what this may mean for me in the future.  I’ve come to {mostly} accept the diagnosis.

I wish I were in a place where I could wax poetic about how much meaning the diagnosis has added to my life or how it made me more grateful or more kind and forgiving.  While I’m sure some of that is true, one year in I am still a bit angry and hurt.  I am far from a place of celebration.

Instead, I wanted to come from a place of hope and set some goals for myself for the years ahead:

  • I hope to be able to incorporate my diagnosis into my life without having my life become my diagnosis.  In spite of this blog and the many support groups I am a part of, I hope to retain some sense of non chronic disease normalcy
  • I hope to become settled enough in my diagnosis to understand that there will be good days and bad days and to relish the good days that much more for it
  • I hope to one day feel okay with the fact that parts of my body are not going to behave in quite the way I would like
  • I hope to learn my limitations and then learn how to push them just a little at a time so that I can continue to feel challenged and satisfied with life
  • I hope to be able to serve in some way as a resource/mentor to those who are newly diagnosed.  This kindness has been offered to me by so many wonderful people along the way and paying it forward would be the ultimate reward.

So while I am not celebrating per se, I am doing my best to look back on the past year in as positive of a light as I can currently manage and to look forward with realistic goals for what is to come.

Six Month Anniversary

17 Saturday May 2014

Posted by in Education

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Well, it has officially been six months since my diagnosis.  My partial anniversary.  In the MS world, folks seems to consider you a newbie for the first couple years at least, so it doesn’t mean much from that perspective, but for me it was an event of sorts – a hurdle I have managed to overcome.  Although not wiser, I definitely feel more knowledgeable.  I have sucked up MS related information like a sponge and can rattle off a disturbing amount of information.  I am doing my best to keep up with the research that is available and periodically troll through scientific papers that I only partially understand just to get an idea of studies and outcomes.

A few pieces of advice:

1 – Register with the National MS Society.  Reach out to an MS Navigator.  I registered for this program as soon as I received my diagnosis and was amazed by the knowledge these folks can provide.  They started by sending me a list of doctors, email newsletters and connected me with the local chapter.  I even received reading material via mail including a book for the newly diagnosed that was a huge help.  Understanding the disease itself even in a basic way and hearing as many times as possible how different the experience is for each MSer is so very important early on.

2- Ask for help when you need it.  And you will.  Thankfully my husband stepped up without any requests from me and took over tons of stuff around the house that I was having trouble managing on my own.  I asked for concessions at work and they were kindly granted (As a caveat here, I work in a small environment.  For a larger employer, you may wish to seek advice and be very familiar with your rights before approaching an employer).  I found a counselor when I need one.  Although I continue to be slightly frustrated with some of my limitations, I am not afraid to ask for and receive the help I need.

3 – Find a good support group.  The National MS Society has a listing of local chapters and they should be able to direct you to a support group meeting near you.   If you don’t have any luck there, ask your neurologist or MS specialist or call a social worker through your local hospital.   Before attending make sure you know if care partners are welcome.  Some groups and events are aimed for patients only while others are only for the care partners.  Everyone will have their preference, but since W has been so involved since the beginning, I wanted to find a group that would allow us both to attend.

4 – Assuming you are a newbie, try to find a support group that is geared toward the newly diagnosed or those who are minimally impacted even if it is not the closest one to you.  I was grateful to learn this fact early on from an honest social worker who explained that some of the support groups are made up of folks who have had the disease for many, many years and/or are severely impacted.  Keep in mind that disease modifying therapies are relatively new medications, so many people with MS today went years without therapy.  I think if I walked into my first support group meeting and found most people in wheelchairs and/or experiencing and discussing significant cognitive issues, it would have been a very different experience.  I would have honestly been scared, a bit depressed, and less likely to share.

5 – Connect with others.  I felt so very alone during my diagnosis process.  Don’t get me wrong, I have a hugely supportive family, a wonderful husband and even have remarkable support at work.  All the same, I was the one going through the process and experiencing the symptoms and no one around me could completely understand that.  I’ve only just started to get over this by connecting with others through email, facebook and in person at events.  It’s funny because I am a bit of a hermit yet in this, I seem to need and crave interaction with others like me.

6 – Although I encourage connecting with others, choose those connections wisely.  Early on I joined every facebook support group I could find.  It didn’t take long to realize that the world is filled with many people who, when faced with an obstacle in life, respond negatively.  Don’t get me wrong, some negativity is natural.  I was depressed for quite some time and focused on the worst case scenario.  Then I brushed myself off with some help from W, my family, and a counselor and am trying to move on.  There is a huge difference in that and being negative all. the. time.  It isn’t healthy and it definitely isn’t helpful to be around.  So, I started departing facebook groups one at a time.  Some I left completely, others I just turned off so I am still a member, but I don’t see posts unless I go looking for them.  It helped.

Six pieces of advise from one newbie to another in honor of my six month anniversary.  It’s not cake, but it is my current version of a celebration and I hope others may find it useful.