Hurts to share

It's the day before Thanksgiving and I'm sitting in my warm front room on my comfy couch listening to Christmas music while my daughter sleeps in her bed. I feel blessed beyond measure. I am praying for those without heat, a house, or furniture. I grieve for those who have lost a loved one or child and are facing the holidays without them. What I am going to say in this blog is raw. It is not meant to offend anyone...but this is my blog where I share my journey with MS and my road to HSCT and I want to be honest.
As many of you know, I've been fundraising for this $150,000 procedure. What you may not understand is how it will work...here is the outlook. I am scheduled for an evaluation December 8th and 9th in Chicago. I will have an MRI, get some labs, and see a neurologist at Rush Memorial and the famous Dr. BURT at Northwestern (he is an immunolgist). They will review my mri, compare to previous I sent in, and review my timeline of MS. I will wait to find out if I am accepted for the study or not. If accepted, I will have to raise the full amount since my insurance doesn't cover. Once paid, I will be scheduled and it will go similiar to 5 weeks of one overnight stay in Chicago a week then two weeks admitted to the hospital. I will undergo daily shots to promote stem cell growth, then have a vascular catheter to remove my stem cells. Then...the high dose chemo to kill my immune system (which is what attacks my central nervous system causing the lesions). I will get my own stemmies back and wait for my blood cell count to be just high to head home (they don't like to keep in hospital because of higher risk of infections). I will come home exhausted. I will have three months of very minimal contact as I have the immune system of a baby at birth. I will have to watch what I eat and do as my body recovers from all of this. But it is building my new immune system. It is STOPPING MY MS!! what does that mean? While it is possible that my current symptoms will improve over the next two years, this will stop my MS from progressing. It will allow me to be who I am today still in six months with no more lesions. In July, the Dr said my newest lesion was millimeters from leaving me paralyzed. Lesions can be active....and grow. So that lesion may grow and I be paralyzed. That's the fear I face. Having to be cared for instead of being able to care for my daughter. Being able to work, teach kids church, babysit, craft, and so much more!!
A stranger sent me an email and said to pour out my heart. When I tried to on paper, all I could do was cry. I'm spending the holidays alone with my daughter....my sisters live out of state  (but we have minimal conversation since my mom passed). The relationship is broken with my dad. I feel like I'm no longer family to him. my mom passed away 5 years ago. I feel so alone! I am grounded in my faith and know I have friends and that God is with me....that's why I keep smiling and keep going. But the last few days, it is hard. I find myself crying and asking God what it is he wants me to do with my life? What am I not doing that He wants me to be?
Let's rewind to four years ago. I was grieving the loss of my mother while still being strong because I am a single mom and I was the only daughter in the state. So my dad needed my help and I had a daughter to take care of. I got a job offer I couldn't refuse. I HATED it. I loved the people and the perks but the job was not me. I tried to fill that emptiness and I made some poor choices. I quit the job not knowing what else to do and then six months later, admitted to my wrong doing. I have taken the consequences and still kept going. I've tried to rebuild and do the best I can for my daughter and I. We live in a small two bedroom apartment that works well for us. We have been blessed with her seizures being under control for almost 7 months now after a very rough year! She has had some damage from her seizures but she is doing great in school now! I have recovered from my most recent relapse and have found ways to deal with how my MS affects me. This has meant a lot of sacrifices for us. My daughter doesn't get new clothes, go to the mall, or have other things she would like. But she has my love and all of my effort to be the best I can for her.
I've had garage sales, posh sales, craft stuff, clothing....all I can to raise as much as I could without having to ask for help. I've always been able to care for Ana with minimal help and I feel so *!*!**!*! (! (I don't know the right word) having to ask. It is needed though.
I'm not asking for money to buy my daughter Christmas gifts. I'm not asking for money to black friday shop or pay my court fees. I'm asking for money to help stop my ms so that in 5 years, my daughter will still have me around. I have learned over the last four years that nothing materialistic will fill the voids. My health is better than others and I want to be able to stop my MS from progressing. I want to watch my daughter graduate and be able to walk her down the aisle (yep single mom lol). I have been unemployed and doing all I can just so our daily needs are met. We were blessed with a box of food for Thanksgiving and a ham from our church! I want my daughter to know what Thanksgiving is. It's not the food we eat, the things we have, or black friday shopping. It's about friends and family. We are blessed to have each other and the countless friends and church family! I don't want her to lose me or have to take care of me before I'm 40. Please know that we are so grateful for all the help! Have a Happy Thanksgiving and may God bless you!

Here is the status. The hotel is 120. Taxi from one dr to another is 45. Food will be minimal. Amtrak is 80. Out of pocket is 500. I've raised 550. 300 stands in the way of me cancelling my evaluation. Please help!!!

www.gofundme.com/pennyfightsms

If you would like to make a tax deductible contribution:

http://gfwd.us/3ypcj

Fear crept in

I have been so overwhelmed with the additional cost of out of pocket expenses for my upcoming evaluation. With no job and being a single mom, it's scary. But I have faith and am leaving it up to God.

15 days!!!

On a bright note, the National Multiple Sclerosis Society is now sharing information on the different stem cell studies and their effectiveness. That makes my heart happy!!! I don't know anyone with MS who wouldn't want the chance to halt the progression of their MS! 78.4 success rate!

Yesterday we had snow and the first cold day of the year. It's currently 17 degrees here in central Illinois. I'll be bundling up as a I head out to church. Now that my daughter is 16, she gets to start the car!! Lol

Have a great day everyone!!!

Www.gofundme.com/pennyfightsms

41 days and counting

Yeah!!! I got my evaluation dates for HSCT with Dr. Burt in Chicago!! I am so excited for this opportunity!! I get excited amd teary eyed thinking of how STOPPING MY MS from progressing is such a huge thing!! The study has shown that over time people have seen improvement in some symptoms, however; the main goal is to stop progression. What this means to me is that I will still be mobile. I will get to enjoy my daughter and our future. My progress in working out and getting fit will continue! My dreams are achievable!!
As stated before, I have A LOT of fundraising to do. The treatment is not covered by insurance. It will be approximately 150,000 I will need to have raised before I can begin the treatment. Please feel free to share my blog, story, ask questions, donate, or anything else!!

Thanks and have a great day!!!

www.gofundme.com/pennyfightsms

My nerves are getting on my nerves!!

I went to the Dr this week (my primary) because I've been having muscle cramps and my ankle hurts to walk on it. Muscle cramps like washing dishes, putting a bra on, or brushing my teeth....makes my arms, shoulder blades, and back ache to the point of almost tears. The ankle, I thought, was because of the bone chip i had in July. I haven't been able to walk for exercise because of pain. First thing, I have the best primary doctor!!!! She doesn't jump on the computer. She reads that before she comes in. She brings a notebook and questions how things she jotted are going and makes notes. She is thorough. She also wants to rule out things and talk to my neuro. Her concern was fibromyalgia. She did some blood work and sent an email to neuro. The results are in and fibromyalgia it is. They increased my medicine I'm on for spasticity and we are hoping it helps.
Now for the ankle! Apparently, I've been compensating for the pain by standing differently on my ankle. So, we started physical therapy. In 37 years, I've never had pt. But they measure your strength and range of motion on both feet. Since its my left ankle, it's my weak side. Until that day, I didn't realize how much difference. There is a substantial difference in my range of motion. This is our first focus. While I wait for insurance to approve 3 sessions for 4 weeks, I have some basic stretching exercises to help with it. I'm hoping it helps because I've been gaining the weight back from what I worked so hard to lose. I'm told fibromyalgia is common with MS. But that doesn't really matter. It still sucks.

On a bright note, I am blessed with a great doctor, am able to seek medical treatment, and this weather is AAAAAAAMMMMMAAAAAZZZZZIIIINNNGG!Have a great week!

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!!