PC594 The Film by Libby Spears #LydiaEmily


An amazing woman with a message, and a story to be told. Using her talent to advocate through her art, LydiaEmily. She currently has a crowdfunding campaign to share her story via film with an award winning producer, please support her!!

We will be watching this campaign/film as it progresses, it is SUCH an exciting project!!

“Art can do more than just hang, it can help.”

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.

    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!

    10 Months After HSCT

    #StopMS

    #StopMS

    As I write this I am sitting outside (in 87 degree weather) watching my kids run around at a local park. I can’t help but feel like this is a dream. A year ago today I started pre testing for HSCT with Dr Burt in Chicago. It hasn’t even been one year since my actual transplant and the ways my life have changed have been nothing short of a miracle.

    Recovery after HSCT is a rocky road but well worth it. It is very scary to feel old symptoms when an infection or illness presents. It is a vivid reminder of what life could have been like. It is close to heart breaking to think that every MS patient isn’t given this as an option to consider.

    It would be easier to list what has changed then type out a long paragraph for you all to read.

    What still remains:
    Hip flexor weakness in right leg
    Hamstring weakness in right leg
    Quad weakness in right leg
    Trouble with a walking pattern
    Trouble with balance (Low fall risk now)
    Weakness in right hand grip

    What has disappeared:
    Foot drop
    Numbness in right hand
    Numbness in left hand
    Numbness in face
    Numbness in chest
    MS hug
    Fatigue
    Optical neuritis
    Eye lid twitches
    Heat intolerance
    Hand eye coordination disturbance
    Bladder retention and incontinence
    Slurred speech
    Delayed thoughts
    Forgetfulness

    In a nut shell almost all of my cognitive and sensory issues have completely gone away. My motor function issues still remain but gradually improve day by day (except my foot drop, that is about 95% improved). Dr Burt says two years is the magic number for a baseline of recovery. I am anxious to hit that milestone.

    Recovery is not easy. It is a lot of ups and downs emotionally and physically. It seems like as symptoms start to improve they actually worsen first. Two steps back three steps forward. Sometimes to the point that the pain or loss of function is so much worse then before HSCT. This lasts about 2-4 weeks and then the symptoms starts to fade very quickly (within a week or two). The most painful reversal of symptoms so far has been the muscles controlling my foot that I no longer have foot drop in and my right hand which had motor and sensory symptoms. At times the pain seemed unbearable… But it was worth it.

    I can now take my children to school, watch them play at the park, I can stand long enough to wash my own dishes and do my homes laundry. I can go to school events for my children, I can go grocery shopping. I can do things by myself! I no longer need someone with me 24-7. I am able to be a mom again… I can not run around or walk like an average person but I can do it in my own way.

    Emotionally it is so hard for me to accept why didn’t any one tell me about this sooner? How could anyone of the many doctors I flew all over the states to be seen by not mention this? If I just would have had HSCT a few months sooner I would be an average regular person right now free of all of my past symptoms… That last flare left me with this severe damage that effects my leg. It’s hard to accept… However seeing the number of people that have found HSCT since I started sharing my story last year has helped make my recovery much easier. Knowing I have helped someone else rid their life of this horrible disease feels pretty awesome.

    If I had to do it all over I would have had HSCT done after I failed rebif and after failing Copaxone. When it became more difficult to “fake” being normal.

    I hope that message reaches at least one more person and saved their future also….

    Don’t wait until it’s too late…

    ‪#‎stopMS‬

    Until next time! Xoxox

    Heather

    This post originally appeared on Heathers HSCT Journey. We are sharing it here with Heather’s permission. Please take the time to visit and follow her page if you are interested in learning more about her experience of HSCT.

    Modern Day MS

    Another inspirational find of the last few years is ModernDayMS.com which is a site created by a woman named Beth. Last month she did an amazing job finding a person with MS to interview and share with the world every single day of the month! I definitely recommend checking it out, it is nice to hear about how other people are dealing with this diagnosis. You can see her summary and links to all the interviews here.

    My Mommy Has MS – Awesome Book For Explaining MS to Kids!

    MyMommyHasMSI spent some time on Twitter the other day and stumbled across this find, Rebecca Clary was inspired to write this book and to create a website to support Parents with MS because (as we know!!) there doesn’t seem to be enough of that.

    It is exciting to see her books (there are four now I believe?) and I bet there is more to come! You can see her site at MyMommyHasMS.com as well as follow her on Twitter @MyMommyHasMS and /or Facebook and support her efforts to inform the kids in a way that they can understand that isn’t scary. I think the more we do things like this and talk about our experience the less scary it will be for all of us. You are an inspiration Rebecca!! We’ve been trying to find was to talk to the kids about MS and can absolutely see you are filling a need. Thank you!!