Christmas Just Wasn’t the Same pt 2

It was quiet in our house Christmas morning. We opened presents and loved on each other more than ever. For New Years we went to my aunt and uncles for a few nights. My mom could barely make it up their stairs to bed at night. We had to help her walk from room to room by letting her hold our arm for support.

Christmas 2018 came and went. And with it, any good feelings we had of mom possibly getting better without intervention.

We saw doctor after doctor. Specialist upon specialist. The neurologists are where we stopped. 3 neurologists in fact.

First were tests. So many tests.

And then possible diagnosis after possible diagnosis. Everyone was sure it was MS. “Definitely MS” the doctors said, but the tests confirmed it was NOT MS. Then it was clearly brain cancer. Then “It has to be cancer hiding somewhere in your body” all of the doctors were sure. But all of the tests confirmed it was NOT cancer of any kind. Then it was an autoimmune disease, then definitely Lyme disease, then definitely an infection in your brain, definitely, definitely, definitely.

I knew what is was. I am not a doctor. Or anyone in the medical field. But I KNEW.

I asked both neurologists “could this possibly be ALS?”. The answer was always no. “No way, ALS is not this rapid. This is not what ALS looks like. This is not ALS”.

Then came the 3 month long hospital stay.

Christmas Just Wasn’t The Same

My mom was diagnosed with ALS. She is dying, and I am her main caregiver, along with my dad and sister.

This story is hers to tell but she can no longer do that. ALS is taking everything she has, including her voice.  So I am giving everything I have to her. I may at times sound selfish but the reality is that she gets everything I have and nothing is left over at the end of the day. This story is hers to tell but I’m going to tell it instead.

In mid November 2018 (less than a year before this post) my mom got sick. She came down with a high fever and weakness all over her body. Cold sweats, freezing but hot to the touch, couldn’t stand on her own, couldn’t keep her balance. She stuck it out and felt better after a day or 2 in bed.

1-2 weeks later my mom got sick again. The same kind of sick but worse than the first time. After a day of this fever, we brought her to the hospital because she could not stand or walk on her own. They diagnosed her with a severe bladder infection and possible lung infection.

After some meds, she felt better but her left leg was still weak and she would lose her balance often. She got tests on her lungs and bladder and all came back well and good after antibiotics.

A month or so goes by and the weakness in her leg and her balance kept getting worse but she pushed through. She was such a champ. We went on with life as usual. Hanging out, playing with our new pupper, Christmas was around the corner! But the Christmas spirit just wasn’t there for our family. We knew something was very wrong.

We couldn’t muster the energy or spirit to decorate, bake our traditional Christmas cookies, or even get my mom to go shopping. These were my mom’s usual things to do at Christmas. She loved this time of year and would set up our Christmas tree with lights and we would all decorate it together, she would put silly decorations everywhere, and get the lights and scenes put up outside. Every year of my life, we have decorated the Christmas tree as a family. That didn’t happen this past Christmas.

I put the tree up myself, strung the lights myself, and helped my daughter to decorate the tree just her and I. I didn’t put up my Christmas village, or extra lights outside. I didn’t wrap the banisters with ribbon or tinsel or bulbs. I didn’t put our wreaths on the doors or Santa pictures on the walls. I didn’t put the star on top of the tree. I didn’t put THE STAR ON TOP OF THE TREE!

Something was wrong but we didn’t know what. By early to mid December my mom’s leg was beginning to drag just a little bit and she was dizzy often. She said it felt like her leg was just not connected to her body, it just wouldn’t listen to what her brain told it to do. She would hold on to things if she needed steadying, but you could tell the dizziness made her tired. The doctors were convinced that she had vertigo. A really bad case of it, but vertigo none the less.

Let me tell you, that vertigo is no where near what was wrong with my mom. But it would take us another 6 months, lots of fighting with doctors, a 3 month hospital stay, and time away from our family, to find out exactly what was happening with our mother.

(to be continued)

 

Its Been a Minute

Hello WordPress world!!

Wow it’s been a minute.

Recently, a good friend of mine told me that I need to start writing again. My life has been flipped upside down and I just don’t know which way is up anymore. So with her great advice of “it will help you” here I am, beginning over.

This post, or even the rest of my blog, may not be about ‘fitness’ or getting healthy or anything in particular. I am just going to write what I need to write, for myself. If it inspires people, cool. If it doesn’t and everyone hates it, that’s cool too.

Newest update on my life?

My daughter is 11. She has been diagnosed with Sensory Processing Disorder.

We got a pupper that I am training to be her service doggo.

My mom is dying, quickly. She was diagnosed with ALS a few months ago. They do not think she will stay with us very much longer.

I am taking a leave of absence from my job to take care of her.

I am not working out. Or eating right. And I don’t care at this moment in my life.

I’m bitter and resentful and completely lost in life.

I am still me.