I get many questions about Multiple Sclerosis. It is different for every person who suffers with it. This is My Story of how I live, struggle and deal with MS in everyday life. Some random rants are included as well. I hope this helps educate and makes it a little easier to understand for those who don't suffer from MS. Please feel free to share with friends and family.
About Me
- Kapluchi
- I'm a MS Warrior, a mom of 2 boys, and the best wife ever!! I was forced into early retirement due to MS. I decided to become a distributor for ItWorks Global and work from home.
Sunday, November 19, 2017
I Ain't too Proud!
"That's because you are...". Ahhhh such a simple phrase that can mean so much. It can be the difference between a good day or a bad day. My doctor said that to me after I said to him that I feel paralyzed from my waist down. Ouch! It was like being slapped in the face with a concrete glove.
I've also been told that I need to have someone to help me when no one is around. We all know how much I love asking for help. Well I give up. I'm throwing in the towel. Waving the white flag. Hearing that response was worse than hearing "you have MS".
So I concede, I need help. I have realized that I cannot fight this uphill battle the way I have been anymore. My family and friends are my help and support system, but they aren't always able to be here. There are services out there that I am entitled to for help. My pride kept me from accepting it. Well I'm saying it now I ain't to proud. I need the help, I need the assistive devices. On to a new way of life. Let's see where this leads us. To be continued...
Being disabled is expensive. An expense we cannot keep up with. My great friend Joann has gone and set up a go fund me account to help us with these costs!
Please check out the link below and pass it on.
https://www.gofundme.com/hjcqk-ms
Saturday, May 13, 2017
Ups & Downs people...Ups & Downs!
Life truly is a roller coaster man! The last few months of my life certainly have proven that. I finally got coverage and had my two infusions, up. Still in search of a way to get my stair lift, down.
Planning and coordinating a huge family vacation with everyone, both an up and down at times. Steady track for a bit. Here comes a huge up, my father bought me the stair lift which still brings tears to my eyes. Its painful to watch your child go through being sick no matter what age. A gentile giant he is. It helps being the favorite of everyone...LOL JK.
So what goes up must come down right?? The continuous decline in my physical health is the other side of that hill. I've leared to deal by now. It's the norm for us. Here we go people the biggest climb of our roller coaster ride. DISNEY!!!!! I am still on the high from this vacation. My whole family together for a week in Disney. This ahs and still brings me to tears. Besides the birth of my kids, this is maybe 2 or 3 on my list of happiest times in my life!
My family is my huge support system and when we're all together I just feel all warm and fuzzy...seriously lol. The ride up still going the week after with my son receiving his First Communion. Celebrating again with every person I love the most all in one place! Ahhhhh warm and fuzzy again. So its a HUUUUUGE hill we've climbed but you know what it's leveled off. That would be quite a down. Let's pull this roller coaster into the station. It was a great ride that ended even greater!
Now that all the planning is over its time for me to get back to reality and start working on fixing me again. My goal is to be driving again before the summer's end. I am slowly starting=g on my road to hopefully getting a little better. I have big plans ladies and gents, big plans ahead. Stay tuned...
Planning and coordinating a huge family vacation with everyone, both an up and down at times. Steady track for a bit. Here comes a huge up, my father bought me the stair lift which still brings tears to my eyes. Its painful to watch your child go through being sick no matter what age. A gentile giant he is. It helps being the favorite of everyone...LOL JK.
So what goes up must come down right?? The continuous decline in my physical health is the other side of that hill. I've leared to deal by now. It's the norm for us. Here we go people the biggest climb of our roller coaster ride. DISNEY!!!!! I am still on the high from this vacation. My whole family together for a week in Disney. This ahs and still brings me to tears. Besides the birth of my kids, this is maybe 2 or 3 on my list of happiest times in my life!
My family is my huge support system and when we're all together I just feel all warm and fuzzy...seriously lol. The ride up still going the week after with my son receiving his First Communion. Celebrating again with every person I love the most all in one place! Ahhhhh warm and fuzzy again. So its a HUUUUUGE hill we've climbed but you know what it's leveled off. That would be quite a down. Let's pull this roller coaster into the station. It was a great ride that ended even greater!
Now that all the planning is over its time for me to get back to reality and start working on fixing me again. My goal is to be driving again before the summer's end. I am slowly starting=g on my road to hopefully getting a little better. I have big plans ladies and gents, big plans ahead. Stay tuned...
Tuesday, February 28, 2017
Behind the Smiles
🚨WARNING🚨
The following may contain reality and actual feelings! Reader supervision is advised.🎗🎗
Living with a chronic, debilitating illness is one of the hardest things someone has to deal with. What's even harder though, is the illusion of a normal able bodied person to everyone else. This is true for any person living with illness of any kind. If they say everything is great, never better, I don't need help, I got it...9 out of 10 times it's an outright lie!😮
Yes we are huge liars. We lie for the good of everyone else. We lie to keep our children from worrying about us. We lie to make our families feel a little more comfortable with the fact that you are alone in the house. We lie to be less of a burden on the ones we love. It's no joke, we are pathological liars people!
Makeup and a smile can hide a multitude of sins...but not the eyes. Look at the eyes, the smile may fool you but the eyes won't! Oh and another thing we are great at is keeping secrets and hiding things. We won't tell you how many times we cry, scream and yell when we're alone. We won't tell you about every fall we take, if we tell you at all. We never get hurt from the falls, and will hide any pain. Our most spectacular illusion of all is not looking sick to everyone.
That being said I will continue with my story. I get up everyday, wake up the boys and get them ready for grandpa to take them to school. After they leave I go back to bed because I am forever tired and my body doesn't want to cooperate. To get into my bed I have to lift my right leg up onto the bed with my arm. Sometimes this takes a few tries.
Now that I'm ready to get up and be productive, I push my right leg off the bed, swing my body around lay on my belly and slide onto my feet, grab my walker and go on my merry way. Standing to cook, clean etc is very carefully choreographed. There has to be something sturdy within 2 steps of me at all times. I lean on the counter or sit on a stool to cook. I have become the queen of vacuuming from a chair, ottoman, or walker. The bathroom thank god is small enough to sit on my stool and clean everything without having to get up often. If I'm feeling extra spunky I'll lean on the counter and unload and load the dishwasher.
Thank the lord for my husband. The man works 60 hours a week, comes home and does the rest of the vacuuming I couldn't do, helps change sheets, does laundry on the weekends, does the dishes I was too tired to get to, oh and he takes out the garbage too! I thank God for my sisters because without them I would never get clean, my kids get to be kids and I have a handful of "SUBER" drivers at my disposal because I can't do that anymore either. If it weren't for grandma and grandpa the boys wouldn't get to and from school. My brother and sister in law make sure they get haircuts so they don't look like the animals they sometimes act like.
It takes a village to raise a Susan!😂
I can't work anymore and that has put a huge financial strain on us so I searched and finally found a business I can work from home. I feel like a productive member of society and the family again. It gives me something to do that I don't need help doing.
Losing independence is the worst thing that can happen to a person, young or old. Being sick, trying to keep up the smoke and mirrors, refusing to ask for help is both physically and most definitely mentally draining. We will always try to make everyone think we are doing well and we are happy but just know that 75% of the time we are holding a half empty glass pretending it's full.
Every once in a while you need to show you are human and release the pressure. I write, this is how I deal. I love, this is how I deal. I thank God every day I wake up, this is how I deal. I laugh and make fun of my illness, it makes some people uncomfortable but...this is how I deal! How do you deal???🎗🎗
The following may contain reality and actual feelings! Reader supervision is advised.🎗🎗
Living with a chronic, debilitating illness is one of the hardest things someone has to deal with. What's even harder though, is the illusion of a normal able bodied person to everyone else. This is true for any person living with illness of any kind. If they say everything is great, never better, I don't need help, I got it...9 out of 10 times it's an outright lie!😮
Yes we are huge liars. We lie for the good of everyone else. We lie to keep our children from worrying about us. We lie to make our families feel a little more comfortable with the fact that you are alone in the house. We lie to be less of a burden on the ones we love. It's no joke, we are pathological liars people!
Makeup and a smile can hide a multitude of sins...but not the eyes. Look at the eyes, the smile may fool you but the eyes won't! Oh and another thing we are great at is keeping secrets and hiding things. We won't tell you how many times we cry, scream and yell when we're alone. We won't tell you about every fall we take, if we tell you at all. We never get hurt from the falls, and will hide any pain. Our most spectacular illusion of all is not looking sick to everyone.
That being said I will continue with my story. I get up everyday, wake up the boys and get them ready for grandpa to take them to school. After they leave I go back to bed because I am forever tired and my body doesn't want to cooperate. To get into my bed I have to lift my right leg up onto the bed with my arm. Sometimes this takes a few tries.
Now that I'm ready to get up and be productive, I push my right leg off the bed, swing my body around lay on my belly and slide onto my feet, grab my walker and go on my merry way. Standing to cook, clean etc is very carefully choreographed. There has to be something sturdy within 2 steps of me at all times. I lean on the counter or sit on a stool to cook. I have become the queen of vacuuming from a chair, ottoman, or walker. The bathroom thank god is small enough to sit on my stool and clean everything without having to get up often. If I'm feeling extra spunky I'll lean on the counter and unload and load the dishwasher.
Thank the lord for my husband. The man works 60 hours a week, comes home and does the rest of the vacuuming I couldn't do, helps change sheets, does laundry on the weekends, does the dishes I was too tired to get to, oh and he takes out the garbage too! I thank God for my sisters because without them I would never get clean, my kids get to be kids and I have a handful of "SUBER" drivers at my disposal because I can't do that anymore either. If it weren't for grandma and grandpa the boys wouldn't get to and from school. My brother and sister in law make sure they get haircuts so they don't look like the animals they sometimes act like.
It takes a village to raise a Susan!😂
I can't work anymore and that has put a huge financial strain on us so I searched and finally found a business I can work from home. I feel like a productive member of society and the family again. It gives me something to do that I don't need help doing.
Losing independence is the worst thing that can happen to a person, young or old. Being sick, trying to keep up the smoke and mirrors, refusing to ask for help is both physically and most definitely mentally draining. We will always try to make everyone think we are doing well and we are happy but just know that 75% of the time we are holding a half empty glass pretending it's full.
Every once in a while you need to show you are human and release the pressure. I write, this is how I deal. I love, this is how I deal. I thank God every day I wake up, this is how I deal. I laugh and make fun of my illness, it makes some people uncomfortable but...this is how I deal! How do you deal???🎗🎗
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