Pondering MS daily

Writing this blog, helps me release what I hold in. What I feel but I'm too scared to say. And I often feel like those who read it, may actually care. Too many friendships are falling apart because of my MS and it makes me sad.
I have never been one to really like quiet...I'm a very social person, until this last year. Now, I prefer not to be in crowds or around lots of noise because of my anxiety and my sensory sensitivity. I battle depression with my MS. All these things make my social life minimal. I have to conserve my energy for parenting, working, and just getting through the day. I'm parenting a teen girl (drama times ten) who has epilepsy. Along with her seizures. She has major depression disorder and possibly a personality disorder. Its not a normal teen who can be left unattended. So even though she is old enough, she srill needs a sitter while I'm at work. My employment ends in two weeks and I'm a little scared of what is going to happen. More stress means my MS symptoms are worse. I'm scared of being homeless, unemployed, and losing my daughter.

Today, I am enjoying nature at the park and reading the lesson for kids church sunday. We will be talking about the fall of Jericho. The lesson is about how when we put our faith in God, even the biggest problems crumble.

My biggest problems I've given to God are:
-an affordable place for my daughter and I.
-my health.
-fundraising for stem cell treatment to stop my MS.
-my daughter as a whole.

I have faith that God will work his great plan in my life. Sometimes his timing and my patience don't work together and I am working on that. My prayer/cry is that God will take away this pain, but he will also use me to uplift others.

I hate MS.

Today, I am angry. I am angry at MS for how it has changed me. Let me breakdown for you how it has changed me.

WORK: I barely make it through 7 hours. I can't remember customers orders. I get overwhelmed when it's busy. I don't do numbers. I have to sit often.

PARENTING: I am so exhausted from work that when I come home, listening to everything is sometimes too much. I can't remember things she tells me. She sometimes laughs when I can't get the words out.

DATING: I don't have the energy for spending countless nights on the town. He works days. I work evenings. It's hard. Explaining my MS symptoms is exhausting.

FRIENDSHIPS: I forgot my friends birthday. Not just any friend...but my best friend since Jr high. We usually have a birthday dinner. Not this year. :( a lot like w dating, I don't have the energy. I can't remember. Or I'm too much like their grandma with my bladder issues....

I HATE MS. I want to be able to work, parent, and build relationships with all of me! Not just the little bit at the end of the day. I am taking a day to just be me and not fight any battles. I will work on mending tomorrow. But for today, I just need to be me with MS. Because that is a lot of discomfort and pain people don't know or understand because I'm wearing a smile.

It was a good day....

Today is a good day. I woke up at 5 am (against my own will) and browsed on Pinterest. I am in love with the Erin Condren life planner and think I need one in my life!!! Lol I really don't have any other symptoms today besides fatigue. I got my daughter off to school and am now at the laundromat. I was thinking how nice it is to feel normal. I'm going to enjoy this time! Doing laundry always makes me feel accomplished. If I can get the three baskets washed, dried, folded, loaded in car, carried inside AND put away, the whole day will be successful!!!

How are my fellow MS'ers?

Mic check

I am frightened at times by how my body feels. Those days when it's hard to get out bed....when my arms or legs are numb and heavy. I used to understand needing to rest after a shower. This morning, my body just doesn't want to get up. I stumbled to the bathroom and had to lay back down. I can tell by my symptoms which area my lesion is in that is being difficult (brain/neck/spine). I am having a hard time sharing and explaining my symptoms..so I will share in my blog and this will be my guide to Penny's MS. (I give myself permission to not exhaust or frustrate myself explaining to others from here forward).

Let's start at the top and please remember these are subject to change at any time!

Fatigue. No....not tired. (Please don't tell me you understand because you didn't sleep well either). I just woke up an hour ago and feel like I ran a marathon.

Cog fog aka cognitive issues. My memory is horrible. I have a hard time getting words right. And please don't forget to make me a list. Understanding complex things is harder....it just is.

My nerve pain is being good this morning!! So we will skip.

MS hug. It is NOT being good. Imagine the hulk wrapping his arms around your midsection and squeezing. Hard. A few seconds...a few minutes...continuous like contractions. It is often hard to smile and keep moving when I'd rather curl up in a ball.

Numbness/tingling. My legs feel like that tingly time when your waking them up after they fell asleep. This is very common. Hence why I move my feet a lot...it doesn't go away by waking them up....it just helps me to know they are still there I guess lol

Spasticity-this is much worse since my new lesion. I would say 80% off my day I feel like I have severe charlie horses in both my calves...occasionally my thighs.

I'm sure it will change as the day goes, but this is my 8 am still in bed check list.

I will go to church, work 1-5, and anything beyond that...well, I don't make plans usually after work. Have a great day and be blessed!!

Fundraising

Gofundme.com/pennyfightsms.

Garage sale

Scentsy party

Posh party

My diagnosis

Hello! My name is Penny. I have many titles that identify me...T's mom, momma P to her friends and the young ladies at work, Pinterest junkie, and many more! On Feb 3, 2014, I gained a new title that rocked my world.....multiple scerosis patient. At that time, the doctors finally had an explanation for the 'wonky eye' that I had ten months prior that left me hospitalized for a week. This time, MS had attacked my balance and my left side. I spent four days in the hospital using a walker and doing research on what MS was. I was scared! I'm a single mom of a beautiful daughter who battles epilepsy and depression......how can I have MS!!?? What am I going to do?

I was at a low point in my life at diagnosis. I had made some mistakes and was rebuilding. I was released from the hospital and started adjusting life to living with MS. At that time, I was staying with a friend (who just so happened to be a neuro surgery nurse). We moved my bedroom downstairs and I began a job the day after I was released. Crazy? Yes. But I had been unemployed and finally found a job after months. I explained the situation to them and they were very flexible. It was a warehouse with less than ten employees at the time. I tried to keep up with the adjustments and symptoms. I struggled with heat intolerance, fatigue, cognitive issues (memory), and anxiety. Working full time after a year with just part time....my body had a lot of adjusting. Thankfully, the job wasn't far from home. In July, my daughter and I made the move back to Canton. It was important for her to finish high school there. This made a 45 minute commute for me to and from work. We got settled in a routine and September 30, I was let go. 

Stress triggers MS...so you can imagine the chaos. I was blessed that God worked things out and I began working pt at my FUN job I've done seasonal for three years. In June, I ran across the Facebook group for Dr. Burt's HSCT group. I began my research and did lots of reading on other patients blogs. I emailed and received additional info about the study and also a questionnaire I completed the questionnaire and within a few weeks, they requested my medical records and said they would they like to evaluate me!!! This was July 20th. I ended up in the hospital, having a new lesion on my lower lumbar spine, and more determined that I need this treatment!! I was so excited to learn that my insurance has covered this study since 2011!! I began my fundraising for the approximatelt $9,000 out of pocket and exoenses while I am in Chicago. Then, five days later, I am notified that due to budget cuts, my insurance no longer covers. So my fundraising went from $9,000 to $250,000. I was so overwhelmed. But I look back and see how God has worked so many things out in my life and I reminded that GOD'S GOT THIS!!