Multiple Sclerosis Awareness Month

It has been far too long since my last post. Life has brought on many changes, blessings and challenges in the last 2 years. Today, I'm going to focus on just one of many things I haven't talked about, haven't posted about, and have kept private. March is MS Awareness month. For those of you who do not know what Multiple Sclerosis is, MS is an autoimmune disease where the person's immune system attacks the myelin coating protecting their nerves causing a variety of symptoms, most commonly fatigue, nerve pain, cognitive issues, spasms, and paralysis. I urge you to learn more about this disease and it's often times "invisible" symptoms.
I grew up being raised by a strong, independent mom who happens to have MS. She never let her illness define her and has continued to be one of the most stubborn and determined women I have ever met. Growing up around her support group, doctors and the highs and lows that came with this autoimmune disease made me so much more aware of other people's health, needs and struggles. I often felt different than my friends and like they did not understand how our family operated or why it had to function differently.
When I was 9 years old I remember at one of my mom's neurologist appointments he let me step on to his balance machine after my mom had. I think initially as just something to keep me preoccupied, but there was a moment when he had me close my eyes and I struggled with balance that he mumbled to my mom to "keep an eye on symptoms like that". His words didn't scare me until I was 11 years old and I was getting my vision tested. I needed glasses, after dilating my eyes the optometrist stepped in to the door way and under a quiet voice told my mom that my optic nerves were narrow and showed signs consistent with MS patients.
I did an essay on MS for health class and found comfort in the fact that this disease in which my mom was battling with had no conclusive evidence to be genetic.
In 2010 while pregnant with my 2nd child we were in a car accident that fractured my sacrum, caused damage to my stomach and bladder. After I had delivered our healthy baby boy in March of 2011 I was still having numbness in my legs, struggling with depression and chronic back pain. It wasn't until 7 years later I would find out this was the first onset of brain lesions from an MS flare up.
Fast forward to October of 2015, I had been actively treated for chronic asthma for almost a year and my health was deteriorating. My doctor told me I needed to move to the coast or the desert or I would develop COPD. We moved to the coast and got out of a hostile work environment which lead to a time of physical and emotional healing.
In March of 2017 I went to the emergency room for breathing issues and rapid heart rate where after a multitude of tests and prescriptions I was sent home with anxiety medication, an inhaler and antibiotics. Finally in May of 2017 I found a doctor via urgent care who read my whole file, who cared about my health and who had recently had one of her staff members diagnosed with MS. This doctor heard me say my face was numb on the right side and justify that this was "consistent with my asthma symptoms" and she immediately ordered a brain MRI.
The phone call that followed was both a relief and devastation. MS was no longer "my mom's disease", it is mine too. Deep down, Karl and I knew what the outcome would be once the MRI was ordered, and while I struggled to accept the diagnosis Karl many times picked me up and reminded me it could have been so much worse. God used a series of unfortunate events to get us to where we needed to be.
I haven't really publicly discussed my diagnosis or journey, but with March 1st being the first day of MS Awareness month I figure now is the time to stop hiding what is a big part of mine and my family's life.
I consider myself to be very blessed, I grew up with a mom who has shared along her journey and choices-what worked and what hasn't. I feel blessed that while I went 7 years misdiagnosed I have less than 20 lesions on my brain and none on my spinal chord. I feel blessed that a doctor in urgent care in the little itty bitty town of Coos Bay helped me finally get answers and put under the care of an MS specializing neurologist. I feel blessed to have a supportive husband,  family and close friends who have put up with me through my self pitty and crazy dietary restrictions because they love me.
While I know I'm not supposed to compare my MS to anyone else's I feel incredibly blessed and encouraged by the drastic improvements in medical technology between 1985 and now. I have had great success on Tecifidera stabilizing my progression and a handful of other prescriptions to help with the existing symptoms.
So I suppose this is where the public service announcement part comes in. If you have medical concerns about yourself or a loved one, don't ignore them. If your doctor isn't taking your health concerns as seriously as you are- get a new doctor. That nagging feeling that something is not right,  usually means (small or big) something is amiss and to not be ignored. To all the MS warriors out there, fight on and never be ashamed of your journey or battle. If you have an "invisible disease" don't let it define you, and don't allow the world's lack of understanding to burden you. Find support in family, friends, support groups and church. Every year new revelations and medical discoveries are made, don't lose hope.
Thanks for being on this journey.
Love,
Danielle

Having a heart like a Child

Being a mother constantly teaches me new lessons. Today while driving my kindergartner to school she started a conversation that had me beaming as a mother and also a little verklempt. I know, it's not food, it's not a craft but today more than any other day I felt like a life lesson was laid on my heart and it was important to share. =D

Nadine: Mommy, I need to learn Spanish.

Me: Well, you're doing a good job already. You know your colors and some numbers. If you want to be able to speak Spanish we can work harder on it together and mommy will learn with you.

Nadine: But Mommy, I need to know now.

Me: Why do you need to know now?

Nadine: [in tears] But Isis speaks English and her mommy talks in Spanish, it makes me sad when she goes home and can't talk to her mommy like I do. I need to talk in Spanish to help Isis talk to her mommy.

Me: oh sweety that very kind of you, but if Isis mommy speaks Spanish then Isis probably speaks it too.

Nadine: I don't think so, and it makes me sad. Isis and I can learn together right Mommy?

Me: You know what, why don't you ask Isis today in class if she speaks English and Spanish. If she only speaks English then we will find a way to help. I think you'll feel better after you talk to Isis today in class.

Nadine: Ok. I will talk to Isis before anyone else.


.... 2 hours and 35 minutes later

Nadine: Mommy you're right! Isis said God made it so she learned English and Spanish when she learned to talk like a baby... and Isis is going to teach me Spanish so I can come over and stay the night and talk to her mommy and daddy. I hope God gives me Spanish talk like he did Isis.


I know some of the conversation, since it is after all with a 5 year old, is comical. The center of the conversation is beautiful. Nadine heard at some point Isis said that her mom speaks Spanish and assumed that since her friend only spoke English. It broke her heart, she was in full tears this morning thinking of her new friend not being able to have a relationship like she and I have. She saw a friend who she thought was in need and was taking a leap to help her in any way she could.

I think being an adult we learn to harden our hearts, and have thick skin in an effort to not get broken and beaten by the rest of the world. The danger of constantly having a guard up is never really fully loving and embracing one another and having compassion for people truly in need. We become observers instead of taking action and having grace towards people in general not just those we feel safe with.

Mathew 18:3 "I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven."