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.

Why I Connect

share_Lovey_25238_20150308_1829_124016I immediately felt alone and scared when I received my diagnosis last year. My first instinct was to drop everything in my life and hide. But I’m a talker and for my family I knew that keeping this news to myself was not an option. I needed to find others who have been experiencing this monster longer than I and could offer me support that I would not be able to receive anywhere else.

It has been over a year and I have befriended people all over the US– even my own mail carrier connected with me through a group!  Getting involved in conversations that have either helped others or myself. These new friends have given me the strength to continue on with life and realize that MS is not a dead end, but an unexpected left turn that my GPS didn’t warn me about. The loneliness has gone and I wake every morning knowing that I have friends to talk to no matter how I feel. These ladies have become closer to me than all the other friends I have outside of the MS World.

I’m so excited that Moms with MS is a place I can come and visit with other moms through chats, message boards or local get-togethers. It is a place where other women accept you for your quirkiness and cry with you when there is a curve-ball in your life. No one should ever feel they have to travel the road alone.

Have you made a connection with others to receive support or are you content with fighting the war alone? How can we help you reach out and create lasting friendships with other moms?

 

 

 

7mo After HSCT

Home 7 months post

Three week ago I was preparing a much different post for all of you. It was a post about my MS returning…

HSCT Journey

Last I posted in December I was sick with a horrible bout of sinusitis. I had been warned it is not uncommon for old symptoms to return during illness post HSCT but this felt different.

My leg which was effected by damage caused by MS prior to treatment was stiff and became even more stiff over a span of two weeks, my right arm became weak, my vision in my right eye became doubled. After a second round of antibiotics my sinusitis was gone but these symptoms continued to worsen. Panic slowly set in that my MS had returned. It just didn’t add up, it felt similar to how I felt prior to HSCT but not exactly the same, I noticed they were worse in the morning but improved throughout the day (total opposite of MS), I had no fatigue, I had no tingling or numbness.

After a week of this with no sign of infection the realization that MS may be creeping its way back became a reality as my vision blurred more and my weakness became more dominate in my arm. I spoke with Dr Burt’s office who arranged for me to come out to be evaluated as soon as possible to figure out what was wrong, However the day after I spoke to them everything changed….

I went to visit my Ear Nose Throat specialist in hopes she could confirm or rule out a sinus infection for certain. After a CT scan of my sinuses, infection was ruled out. After her I visited the eye specialist that has treated me for optical neuritis for the past 4 years for his opinion on my vision. After an extensive exam and new visual field testing he assured me this was not optical neuritis and my vision had improved greatly since HSCT. He assured me this was not MS related but unsure of what could be causing the double vision. Frustrated, panicked and overwhelmed I felt the best hands for me to be in were in Chicago with Dr Burt and his team until that night I spoke with a friend who is a pharmacist about what was going on. I mentioned that I had been on synthroid in our conversation at which point she told me to contact my doctors immediately about rare serious side effects caused by synthroid….

After some blood work and stopping the medication synthroid was determined as the culprit for my current issues at the time.

I had been on synthroid for hypothyroidism since September, I had a few issues with the dosing, it had to be lowered frequently but once I reached a low dose it worked well for me (or so I thought). My reaction to the synthroid was masked by the sinusitis for almost 3 weeks, what I thought was sinusitis bringing back old things was actually a reaction to synthroid that was building up slowly but horribly.

After stopping synthroid 14 days ago I have completely stabilized with all of my similar to MS symptoms slowly disappearing. My vision improved almost immediately after stopping the medication and is now about 95% back to normal.

Scared is not the word to describe how I have felt the last few weeks…

Today I am happy to report I am seeing the true gains of my strength and endurance post HSCT (and post synthroid). Today I went grocery shopping, took my toddler to a music class, did homework with my kindergartener after picking her up from school, made dinner then did something that was just a dream a year ago.. Took my two amazing children to the playground to play….

My MS is still gone.

While going through this situation and now feeling better it really made me see how much my quality of life has improved. As I have said before my biggest and only regret is not having HSCT done sooner.

I have a long way to go strengthening my leg that MS destroyed. Although big issues, my leg and a bit of balance issues are the only daily reminders that I ever even had MS. I am confident that this was a speed bump in my journey of the beginning of my new life… Life after MS

Post originally appeared on Heathers HSCT Journey page on Facebook, republished here with permission.

Breastfeeding and Meds (by Hannah)

This week is going to be a very difficult time for me emotionally. Tomorrow I have to get back on my MS meds. Tecfidera cannot be taken while pregnant, so I got off of it when I got pregnant with my sweet #3. Then she was born and I wanted to breastfeed for 3 months while I pumped enough breast milk to get her 6…read more

This story (in its entirety) originally appeared on Mormon MS Momma and was republished here with permission.

Mom Story :: 10 Years Later

Mom Story :: ChristinaIt was June 2004 and I was so busy getting ready for my September wedding that I was planning for almost 2 years. It seemed as though one day I rolled out of bed and could barely stand on my own two feet. I was so dizzy, a very strange light-headed dizziness. Everyone was convinced it was stress or maybe an inner ear infection. I started noticing other weird symptoms…like my right arm would get very cold and numb, my eye would start twitching out of nowhere, and these wierd “muscle-jumping” sensations. Of course when I googled all of this it came up that it was MS, which everyone laughed at and thought I was just a stressed out bride to be on the verge of a nervous breakdown.

After going to an ENT and even getting round of antibiotics (imagine it was that simple!!) I finally went to another doctor who sent me for a brain MRI in fear it was MS or a brain tumor. After the test I will never forget that my films were placed on the top of the pile…which is never a good thing. The next morning as I was in training for my job at the time there was a bunch of calls coming in and I found out that I had 13 legions in my brain and I had MS. It was a very emotional time and I was unsure what my life would become.

My soon to be husband stood strong by my side as well as my family and friends and we made it to the wedding and thankfully I felt good by that time.

I just had my 10 year MS anniversary and will be celebrating my 10 year wedding anniversary this September. I like to think my husband and I have a very strong bond after going through that right before our wedding. Our “in sickness and in health” started before our vows were even spoken. He has never missed one doctor’s appointment or one treatment in 10 years. I have an adorable little boy and a beautiful life. I also am under the care of an extraordinary doctor who has halted the progression of my MS and kept me attack-free for years.

This summer I will start planning my first MS fundraiser, which will take place in May 2015, so I can give back for the many things I have been blessed with.

**Event information coming soon!!

By: Christina Benevento