Prior warning: this is a deeply personal post. And a long one. It feels a bit odd & exposing to write but it also feels important to us to share in hopes to help people understand where we are, why we sometimes make the choices that we do, and to maybe shed light on the situations that so many like us find ourselves in.

Our story started in 2013.  Our tiny soap company had been around just a few years.  Wayne and I were both working full-time jobs and also working full time trying our best to build up our soap company.  That meant many late nights and weekends spent doing production, packaging, and traveling for shows. We were tired. A lot. I had been to the doctor several times over the last year telling them I just didn't feel right but nothing was showing on blood work, so the assumption was that the stress and work was just running me down a bit so we kept moving forward.

Us

In October of 2013, we did a crazy thing and signed up for a show on Saturday in Alexandria, VA and one on Sunday in Chapel Hill, NC.  We climbed in Bubbles (our trusty soap van) and made the drive. Alexandria went beautifully but finished later than we planned and we were both exhausted.  We realized we weren't going to be able to drive the whole way, so we stopped and slept a few hours, got up super early and arrived just in time to set up in Chapel Hill.  It was hot and we were tired. I was having trouble walking. It felt like I was trying to navigate through quicksand. My legs got so incredibly heavy and I could barely move. I kept hiding in restaurants, leaving poor Wayne on his own under the tent. Somehow I made it through the day and convinced myself that I had simply overheated.

We drove home that night and I woke up the next morning with no feeling in my left leg. It was gone. Completely numb. Once again, I rationalized. I told myself that I had pinched a nerve with the long trip in the van. But, I did visit my PCP.  He sent me to neurology.  Who sent me for several MRIs (super fun for this claustrophobic gal!). It was a process, but by mid-October, I was told that I had Multiple Sclerosis. I was sent for five days of IV steroids and, because my MRI showed a very long spinal lesion, I was referred to an MS Specialist. 

What is Multiple Sclerosis?  MS is an auto-immune condition, meaning that the immune system attacks the body directly. Specifically, with MS, it attacks the myelin which is the protective coating around the nerves in the central nervous system (the brain and spinal cord). The best way I've heard this explained is to think of an electrical cord. You know the black coating around the electrical wires?  Think of that as the myelin that protects the nerves in the brain and spinal cord.  If that coating is worn away or torn off and the "wires" underneath are exposed, it is possible that the cord will not work as well.  The electrical signals may not get through or may get confused.

The same problem exists with MS.  Because these lesions that MS'rs get can be anywhere on the brain or spinal cord, and because there are different types of MS, everyone's experience with MS will be different - different symptoms, different severity. To make things even more complicated, one day with MS may be great while tomorrow may not be.  It is unpredictable.  The cause is unknown.  There is no cure. 

 

By being diagnosed with MS, I joined the legion of people with invisible illnesses.  I so often hear "you look so good!"  While much appreciated (who doesn't love to hear that?!?), like so many other diseases, unless I'm wearing a brace or in a wheelchair, you can't "see" MS - the damage is visible only on MRI or through tests done by a neurologist.  I also joined the legion of Spoonies. We who have severely limited energy and try to use it as wisely as we can.  We are many and we are strong. 

So, I function & life moves on in spite of a myriad of daily symptoms that are mostly managed by medications (neuropathic pain, tight muscles, periodic crushing fatigue). Every three months I go for an infusion that knocks out a small portion of my immune system in order to try to prevent my MS from doing any more damage. I am immensely grateful for that medication as I am quite sure I would be in a very different place without it.

Day to day is very “normal” by MS standards...except when it isn’t. 

Flash forward to now. It has been almost five years since my diagnosis and it has been a rough year for us. Lots of stress all around - big (exciting!) soapy projects, lots of things going on personally and we lost two of our fur babies. I haven't been feeling well for a month or so but woke up one morning with a loss of function in my right arm. I started a steroid treatment which restored the function, but I developed an off-kilter feeling and a myriad of other unsettling symptoms. 

After consulting with my neurologist, it seems that I have a new lesion high on my cervical spine or brain stem (the area of your brain that controls your sense of balance). It became clear that until this particular relapse has started to pass, I couldn't be left on my own. So, while our tiny soap company continues to operate, our big plans of Wayne heading off to a few shows had to be canceled at the last minute.  We hate to disappoint people but every once in a blue moon, MS decides it has to be the priority in our lives and we need to give it that attention. 

The other 99% of the time, we make a point to set MS aside, so we can focus on the life we want to live - not the life it is choosing for us.

Be Well,
Julia

Want to learn more about MS?  The National MS Society has lots of wonderful information. 

 

Comments

Karen Blanchard:

Beautifully written.

Nov 01, 2018

Leave a comment