My Life Since Diagnosed with Multiple Sclerosis (Part 2)

Being told that you have Multiple Sclerosis is scary especially when there is no simple way to define it. I remember the first time after my diagnosis and I went to the neurologist and he handed me multiple (8) books about treatment options of which I brought home and read through 2-3 pages. After that I remember crying for 2 days because I was so scared and eventually threw the books away and praying that it would go away. That did not work.

I later went to my PCP and asked him to break it down and explain it to me as simple as possible so that I could understand. He told me. And then we cried together in the exam room for almost an hour. This has to be one of the scariest things that I will ever have to face. The main thing I am scared about is not knowing what tomorrow brings and how my life is changing and everything is unpredictable from one moment to the next.

April Poll

We are adding a monthly poll to the site! If you look to the right of the screen on MomsWithMS.org you will see our new poll. We will be changing the poll once a month and appreciate your participation! This month is a question for Moms with MS asking “Which came first?”. The options are Motherhood and MS, you can comment on the poll or on this related post to have a conversation about it and we will update this posts at the end of the month!

Update! We have the results….
April Mom Poll Results

My Life Since Diagnosed with Multiple Sclerosis (Part 1)

I am a young mother of 4 children. 8 years ago I was involved in a car accident that has changed my life. I don’t know how to describe it.

Nothing has been the same ever since. My “normal” routine at the time was get the 2 older children off to school before going to work at that time I only had 3 children. Everything changed 1 night when I was shopping for my daughters birthday party and I was driving home with the back seat full of supplies. An oncoming vehicle decided to make a U-turn in front of me and hitting my car causing my car to spin multiple times before coming to a stop. I left the accident in an ambulance. My doctor referred my to a chiropractor for my back and neck injuries. After a couple of weeks I noticed I had a strange headache that didn’t seem to go away. My chiropractor sent me for a MRI or CT scan,the one of the brain. He got my results back 2 weeks before Christmas. But he did not give/share them with me until the first week of January. He did not want to ruin my mood for the holidays with my children. When he showed them to me it looked as tho someone took a pencil eraser and erased random spots in the scan. I had no idea what I was looking at,he told me to see what my PCP suggest for the next step. My PCP referred me to see a neurologist for more tests. By the time I finally got to see the neurologist I just found out I was pregnant with my fourth child. The neurologist told me due to being pregnant the only test they are able to do is a spinal tap. He had instant results. Since my diagnosis I haven’t been unable to do much.

Before my diagnosis I worked 6 days a week. Now 7 years later I am unable to do much of anything. I am depressed a lot due to being unable to do a lot of things that “healthy” parents are able to do with there children.

I have tried to maintain a “normal” life. But feel as tho I am failing as a person. I have to depend on my fiance and children to care for me and take care of the house as far as cooking, laundry, dishes, and cleaning all areas of the home.

Finished Seattle Run MS 2015!!

Seattle Run MS 2015I went to Run MS this year with my husband. We both wanted to try out the challenge of running a 5k (something that I had never done and something he hasn’t done for more than 20 years). When I registered for the walk, I think the easiest question was “Why” to which my answer was “Because I can.”. I plan on staying in shape and as healthy as I can and it just makes sense to add this to the mix! I’m grateful that I am able to do this especially 14 years after receiving this diagnosis. I’m happy to say that we both made it!!

Lucky for us his mom was willing to come to our house early in the morning and watch the kids so that we could do it, and really it all went really smoothly! Even checking in which I remember from past walks as being complicated was easy, simply because there weren’t nearly as many people.

I didn’t fund raise as much as I have in years past, this is because my energy was absolutely sucked up with trying to update our national team pages and also to train so that I was ABLE to do the 5k. I’ll consider doing it bigger next year since the pages won’t need to be updated and also because it should be easier to do the 5k the second time since I will be training more consistently now. I’d like to have a team tent again which requires a $5k goal last time I looked it up. It would be great to be able to have a meeting place for folks affiliated with Moms with MS and also to meet more moms who have MS.

The run itself was definitely a challenge, especially since I think I was still recovering from a long day of flying two days earlier on Friday. I was able to jog most of the time and finished it in approximately 39min, and I did stop at one point to use an outhouse along the way. It was nice that they had tags that we clipped on to our shoes so we could see our personal time after the race, Geoff was able to finish in 31 minutes.

Today I am totally sore, so I am doing these things:

  • Drinking some Calm water
  • Rooibos tea and
  • Tulsi tea to try and rejuvenate a bit
  • Epsom salt bath too.
  • This post originally appeared on KristinBennett.com after the first year of Seattle Run MS 2015 and was republished here with permission.

    Colorado Moms!!

    welcome_colorado_sign1Our next featured local group is for Colorado Moms!!

    Our local groups on MomsWithMS.com are for moms to both get and provide peer support and recommendations to what is or isn’t working for them (doctors, pharmacies, etc.) and maybe even coordinate some events to get together locally or via phone/internet! So if you are a mom with MS in Colorado we hope that you will join!

    Please note that to access the group you must be a member of our private MomsWithMS.com site. If you are not a member you will be prompted to create an account and will have to wait for it to be approved before accessing the site, so be sure to fill out all the questions! If we don’t have a site for your locality yet then you can either make or ask Kristin to do it.

    Pacing for Pattisue

    PattisueSpreading awareness, did yall know yall can come join our team, even if yall can’t be in Oklahoma for the walk, the MS has walks all over, did u know yall can join Pacing for Pattisue and as a team member yall can do your own fund raisers,and if yall raise $100 or more ya get a really cool t shirt, each! Did yall know, that MS has no cure, but many types of MS, I actually have one of the worst types, I have PRMS, (progressive relapsing multiple sclerosis). There are so many ways anyone can help, for free,starting with sharing this link, spreading awareness is key to finding a cure, registering to join Pacing for Pattisue, is free if u sign up for a walk, or u can sign up to do a fundraiser, have a bake sale, all money raised goes to ms society… We may not find a cure in my life time and really I’m ok with that, so long as my life is documented and used to fond a cure for tomorrow, but we can’t do today with out your help, we need to spread the word about MS so people know about it and want to help. How can any one help if they don’t know what they are helping with………the best part about me having MS is that any questions u could ask me I actually know they answers ……

    I’m gonna tell yall a few things and it might be uncomfortable for yall to read, how ever its not easy for me to tell the world but if I don’t tell folks why would they want to spread the word about MS

    My name is Pattisue, I am 42, I am a photographer, I have PRMS , it does not have me. I am. Mom, nanna, a daughter, a fiance, an aunt,a sister. I am medically bed bound with out my chair, (the MS did not make me handicap however because of being handicap it did excelerate the MS) I wear pull ups, all day n night, my medical supplies cost $300 amonth, that’s just pull ups n bed pads, not anything else. I’m fat because I can’t get up to work out, not because I’m lazy, it hurts my feelings when people talk about my weight , I don’t really eat,because food is gross, all my teeth are rotting out folks like to say I must be a drug adict, well yes actually I am, I have to take 7 pills every morning 4 n the noon, and 4 at bed, I continuously look “high” because of the pills I have to take to allow me to live but, none of what I take regularly is a narcotic. I can crawl better then any toddler……why yes ms is all in my head! But I’m not mental! I have seizures and can’t stop the go…. I forget all the time,I have no short term memory,in part why I lug around a camera, but oh my damn I have a long term memory like an elephant….if I have a conversation with u, I may not remember that day, but if u give me enough time “to process” I will remember everything…..I can’t function in today because I’m still in last week. I cry uncontrolled for no reason, and sometimes I laugh when I shouldn’t, I’m not crazy, yes I know its inappropriate,but I just can’t help it, if ur talking to me and I just blank out n start twitching about, its not for attention, it means the MS is messing with me…. From my waist down I’m in constant chronic pain, I mean the absolute worst, (imagine ur legs going to sleep, that tingling and then for the fun of it dowse ur legs that are asleep in I don’t know propaine and throw a match, but wait that’s not it don’t forget to ad in Paul bundy dragging his dull ax down both at same time cuz he’s strong like that he can hold one in each hand, but make sure u put a bone knawing purana in the mix, and then twist the legs together like a rope and make sure u twist it so good that the legs are as not extended but always in a fetal position) all of that while trying not to throw up …….. Because u have a migraine that is older then moses……

    P4P_shirt

    I feel like the worst mom, partner on earth, because its sooooooo hard for me to move I absolutely miss my b12 shots, I’m always Soooo sluggish and it takes an act of congress to get me out of bed, my kids don’t like me, they just don’t get it, I forget so much I fear I will forget them if I don’t see them often ….. I have the worlds worst short term memory but long term….. That’s good stuff……….part of being a photographer I’m preserving my memories….. N letting The world see through my eyes what I can’t explain

    P4P_OAK
    And being a photographer is no easy task in itself, but when ya get dizzy n blurried eyed because of MS, you learn to make ur worst n greatest assets work together, so I use my photography to spread MS awareness let them both be my passion Equally …..

    Ok folks no I swear this is not a pitty party, but an awareness party, and its free to share this, the best things in life are free, prayers, hugs, sharing, caring,

    Now yall know more about me then I want the world to know, but how can we spread awareness if we doing know what we are dealing with…..

    This is my fight with MS will yall please come join our team. Thank u . Have a blessed day!!!

    Thank you Pattisue for submitting your story! Please feel free to share your Mom with MS story through the Share Your Story link. If you have read this I hope you are able to contribute to Pacing for Pattisue! You can also LIKE her Pacing for Pattisue page on Facebook!