Moc9 - January 11: Tell Me a Story

Moc9 - January 11: Tell Me a Story
tinkerbell1112, Jan 16, 2021
Orange is very hard to find! LOL
Fruity - Orange by Kristin Aagard
Project Mouse (halloween) by Sahlin Studios & Brittish Designs
Surf Shack by Forever Joy
Artsy Journal Template from Scrapping with Liz
This is Me tag from Allison Pennington's portion of All About Me Collab
MS ribbon: from the internet

Journaling: 1393 words

I'm a Warrior, but I didn't know it until 16 years ago. After Asher was born, I remember noticing that I was struggling with a few things. I was struggling going up and down the stairs, I was struggling with neck pain, but mostly I was struggling with opening his diaper tabs. I found this very strange. I was at a regular doctor appointment for something one day and mentioned it to him. He wasn't too concerned at first. I remember he cracked my neck like a chiropractor and sent me on my way. While it must have helped my neck, it didn't help my hands.

I said so the next time I saw him. This time he took it a little more seriously. He sent me to a rheumatologist. The rheumatologist asked me some questions, took some blood, and if I recall correctly, was thinking maybe I had arthritis or Chronic Fatigue Syndrome. As she described these things to me, I kind of felt like she was crazy, truth be told. But I went with it because I wasn't sure what was wrong with me either. This period of time was a bit fuzzy, and I can't recall if she prescribed me anything or simply said I was good to go. But I remember it was a fairly short relationship. I went on my way and continued on with my painful hands.

Fast forward a couple more months and I was back at my regular doctor for something and he asked how it was going with the rheumatologist. I told him it wasn't, but that I was still experiencing the pain and difficulty in feeling things in my fingers, and in addition the neck pain was back. This time he took an x-ray of my neck. As he looked at the x-ray, I just remember the look in his eye as he turned to me and said he was going to have to refer me to a neurologist. I remember this feeling of dread - a neurologist is who takes care of those with brain issues. I scheduled the appointment with the neurologist, who honestly, gave me the impression that he didn't think I needed to be there. Eric was in Texas already when I went to get my MRI. But when I went back to get my results Eric was with me. I don't remember much of the appointment, but Eric does. He tells me that the Doctor appeared to be convinced even up until he pulled the results of the MRI up on the computer that I was there unnecessarily. Eric says that the moment he pulled them up on the computer he could see his face visually change directions from "yeah sure" to "oh, ok". That's when he broke the news to me that I "most likely" had Multiple Sclerosis. He gave the disclaimer of "most likely" because my brain showed activity that I had experienced an MS attack at some point. But that they couldn't be certain of a diagnosis until my brain showed more lesions (showing another attack) so that they could compare or unless I did a spinal tap so they could draw spinal fluid and test the proteins in my spinal fluid. I said give me the spinal tap.

Eric went back to Texas and thankfully Dad & Diane were living with me at the time while their house was being built. I took the spinal, and the results were conclusive. I even had a nurse friend who has MS look at them as well, and she agreed. Because we were moving to Texas, I said good-bye to the Neurologist after he gave me the diagnosis and said I'd find a new one in Texas.

When we arrived here, one of the first things I did was look for one and I found one that was in the same building as my OB. I couldn't stand him. He told me I was fine and that I was in remission and that I should just come back to him after I had my next attack. This went against everything I was learning about medications and how you should treat MS. But, I was planning on having another baby, so I just said good-bye to that relationship, went and had another child, and said I'd find a new Neurologist after I was done having children.

Once Ada was born, MS hit me like a brick on calm waters. About 6 weeks after she was born I was a wreck. I asked the MS Society to recommend some Neurologists and picked one that had a few in the practice so that if I didn't like one, I could maybe try another. That's how I ended up with Dr. Barry, and I'm here still. Feb 2007 was my first appt. He put me on Tysabri, an IV administered medication, which I started the following month. I had a great run on that medication until my JC Virus count went over the safe threshold. This meant that Tysabri was a risk factor now for me to develop PML, a brain infection. So, I had to go off of the medication which had worked for me for 10 years. In October 2017 I took my first oral medication. I missed going into the infusion suite each month (I really did - I'd developed a relationship with the nurses and some patients who were there with me at the same time each month. I also enjoyed the forced quiet time to read or scrapbook on the laptop because it was 2 hours I HAD to do nothing). But, I really enjoyed the freedom that taking one pill a day allowed me instead.

Having Multiple Sclerosis has not been easy. It's been an up and down road. Sometimes I feel so good I ask Dr. Barry to re-confirm I really have it. He then pacifies me and shows me my MRI with all of its lesions and points out why my brain and spine shouldn't have what it does. Then other times I feel so crummy I wonder why I ever doubt it. Over the years it's caused me to experience pain, fatigue, frustration, but mostly fatigue. The fatigue is crippling. But the number one thing I always said to myself was that I was not going to allow my MS to get in the way of doing anything for or with my kids. If it was 101 and they wanted to go to the zoo, even if I was having a rough day, and I knew I'd need to sleep for 2 days after, I went to the zoo. The past 15 years are scattered with moments like that. The past is also scattered with moments of me crawling into bed at 7pm or falling asleep on the couch or having sandwiches again for dinner because I'm too tired to cook.

I never hid my MS from Asher & Ada, but I never used it as an excuse either. I did use it in factual basis when talking. They needed to know what I have. When Asher was in 8th grade, I took him with me to a Med sponsored event to listen to a talk given by a Neurologist about MS and an experience by someone else. It was Ada's turn this year, but alas, Covid. The more they know the more they will understand. I don't want pity, but I do need understanding.

This disease has not defeated me, but it has altered how I've gone through life. I have had to pick and choose what is important to me each day. Maybe my house isn't spotless, but my kids have always had help with their homework. Maybe I don't get to go out and do all the things like every other parent does or schedule all the fun outdoor stuff like others did, but my kids always knew they were loved. Over the years I've had the occasional privilege of being there for a couple people as they were also diagnosed. It's a very scary and emotional time. I try to remind people it's also not a death sentence.

I'm an MS Warrior. It wasn't a job description I would have chosen for my life, but it's one God chose for me. I wear my armor with exhausted pride.
    • AnneofAlamo
      MS Warrior! I so love that title! Taking something thats intent is to weaken and making you the strength! I read each word, just stunned. I have one very close friend with MS, and reading this gives me greater understanding.
      and Orange is hard to find! 'cept in halloween
    • bestcee
      I'm glad something resonated with you to write! This is so fabulous! I love that you documented all about getting diagnosed and letting your kids understand without it being an excuse. Thanks for sharing! Thanks for playing in my challenge!
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