Archive for August, 2013

My Inspiration

Written by on August 27th, 2013 – 8 Comments

My Healing Hand

Saying goodbye is always a painful thing. Since my diagnosis, one of the most difficult things I was faced with was saying “goodbye” to the life I once knew.

Almost three years ago today, I was confronted with my most heartbreaking, most beautiful, and most life-changing goodbye. After a courageous battle with cancer, my 13-year-old dog Kenya grew tired and was ready to go. I struggled with my decision but I knew it was the one last thing I could do for her.

Some of what I write now are things I have never shared with anyone. I’m dedicating this blog to Kenny. In life, and in her time of passing I was her healing hand. Thanks to the courage she left me, she will forever be mine.

Photo: Me, Kenya and my main man, Caesar

Letting Go

I held her close and when she took her last breath I only whispered my usual nighttime message to her: “goodnight baby girl, I’ll miss you and I love you. I can’t wait to see you in the morning.” I looked forward to seeing her happy face each morning when I opened my eyes and knew she would still always be my first thought as I woke. I wouldn’t say goodbye.

Letting her go caused an unexpected reaction. All that happened in the five years since I was diagnosed with MS came crashing down on me.

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MUGA Tests Demystified

Written by on August 13th, 2013 – 4 Comments

In 2009, I underwent chemo to try and beat down my immune system so I might get into remission. I had four doses of mitoxantrone, which is the chemo they use to treat MS. (Which we now know I actually don’t have. I have neuromyelitis optica (NMO) which I’ve explained here. )

Mitoxantrone is a pretty heavy duty. There’s a lifetime cap of 12 treatments because it has the potential to damage the heart muscle, even long after treatment has stopped. MS specialists will use chemo as a last resort when other treatment options have failed. If your doctor recommends chemo to treat MS, it’s because they believe the benefits (the potential to get MS into remission) outweigh the risks.

Each year since I had chemo, I have had a MUGA scan. (Muga stands for “multigated acquisition”.)  The scan creates video images of the ventricles (lower chambers of the heart that hold blood) to check whether they are pumping blood properly. It shows any abnormalities in the size of the ventricles and in the movement of the blood through the heart.

When I arrive at the hospital, I go to nuclear medicine to check in. Once they are ready for me, they call me into an exam area where I sit on a bed while one of the techs, dressed in a very Game of Thrones lead tunic draws some blood. They label my blood and send it off to the lab for about half and hour where they spin my blood with some isotopes. Isotopes are a radioactive particle that when spun with blood, sticks to the red blood cells.

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4 Things I Wish I Knew When I Was First Diagnosed

Written by on August 6th, 2013 – 3 Comments

As I have said before, I was diagnosed just last year, on July 7 2012. Having just passed my one-year anniversary, I’ve been doing a lot of reflections on the past year, my journey as someone who lives with MS, and how I’ve dealt with the first year. There are some things that I definitely wish I had known right off the bat last year, and here’s some them!

1.    Patience is a virtue!

As many people that have MS will know, and for those of you recently diagnosed will learn, there’s a lot of waiting that happens. I waited two months before my first doctor’s appointment after getting diagnosed, and at times that was very frustrating. Knowing that I was living with this, but not knowing anything about from a medical professional was also kind of scary. (Shout out to the MS Society’s website for giving info and putting my nerves at ease!). Besides that, waiting for appointments, medical exams like MRIs or CAT scans, for treatment my patience has been tested. You learn how to wait out those moments, and your patience grows, which is a good thing.

2.    There are really bad moments.

It can kind of really suck sometimes living with MS. Case in point, this past winter break. I had my worst relapse to date: constant nausea, constant vertigo, and loss of movement in my hand and legs, constant tiredness. I spent the vast majority of my winter break on my couch at home, doing absolutely nothing, because I couldn’t (except for venturing to the hospital 5 days in a row for a dose of steroids, even on Christmas.) For somebody who thrives on the energy of others, gets bored of non-activity quickly and is extremely extroverted, this really sucked. I didn’t know how bad my relapses could get so I was so unprepared for it. However, it passed, and I haven’t had a relapse since!

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