Sorry not Sorry

     Spring it’s the time of year everybody’s waiting for. Today’s going to be upwards of 70° I’m not happy about it. I can’t enjoy the spring and or the summer. The nice weather just reminds me how restricted I truly am. Not only am I stuck in the house by myself but I can’t even get to a window to look outside and enjoy the nice weather. Getting me out of the house is a project for two people. I may have a wheelchair ramp, I may have a scooter, A chair lift and a wheelchair but I am still unable to leave my house on my own. The 100lb ramp has to be put up by someone, then the chair or scooter brought up to the door and finally someone to help move me from one spot to another.While I am so incredibly greatful forall of this it still does not give me much independence.
     Everyone is telling how beautiful it is today.to them I say that’s nice enjoy it. Today I am so sad and meloncoly because it’s so nice. I’m sorry to be so depressing but it really because this is the reality I have been give . MS is horrible. It steals your life no matter how hard you fight against it! We all know that I have been fighting it every miserable step of  the way. I’m sorry but I’ve reached a point where it is beyond hard to keep a positive outlook. I fake it to make it! My kids are my literal reason for living! I’m sorry if you think I do t show up because I don’t want to but the reality is if I’m home alone I can’t. I need adult supervision. I also want to explain the physical toll going to one event takes on me. One day out and I am in bed for two.
     Today is beautiful and I am sitting here alone crying because I miss it. So to everyone who can please enjoy this beautiful day for me!

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
 

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...

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???🎗🎗

Holidays

     Thanksgiving has come and gone. The hustle and bustle of the holidays is upon us. There’s a chill in the air and a song in my heart. That sounds nice right? Like the beginning of a Charles Dickens novel almost. Welllll that’s where it ends and a big dose of reality smacks you in the face. Each New Years for the last four years I have made a vow that this year would be better than the past one. I’m going to feel better; I'm going to be able to do more. Each year it’s a big fat lie! I am not feeling better, I cannot do more stuff, and this past year sucked! If you are looking for an upbeat, cheery, feel good kind of story then this isn't the one for you.

     It’s not for lack of trying but I wake up as I’ve said before a little worse each day. The holidays don’t feel like they used to anymore. These should be the best years of my life, enjoying the holidays with my husband and crazy kids. Instead I sit home all day alone. My kids come home from school and we do HW, dinner, then they play a little or watch TV till bed. By the time they get home from school my body is ready to close down for the night but that cannot happen when you have young children. I push through. I push through the pain. I push through the sheer exhaustion. I push through not being able to balance when I stand. I push through having a leg that has become so rigid it will not bend or move at all. Or move at all. You know what? I’m freakn tired of pushing through. I’m tired of acting like everything will be ok. I’m tired of putting up a front for everyone.

     I have the oddest feelings lately that are so hard to explain. I feel like my body isn’t mine. I am emotionally inept lately and have no desire to show any emotion.  I am trying so very hard to be positive and upbeat. I try to see the glass half full. I am a firm believer of getting back from the universe what you put out. I guess the universe can tell when you’re faking it to make it. Nothing gives me hope or happiness anymore. I have no desire to be mushy or loving. I’m like a robot on auto pilot. I am not the same person I used to be. It’s like my mind has been placed into someone else’s body and I do not like it!

     This time of year I’d be driving from store to store with my mother and/or one or both of my sisters. We like to go late because we are night owls. I’d be going to the city with my family to enjoy a New York Christmas for the day. I’d be walking around the stores and the mall just looking at all the decorations around me. Last year I did that but not all of it. This year I can’t do any of it. The only holiday decorations I enjoy are my own, which wouldn’t be up if my husband didn’t take direction well. I only enjoy the stores from my phone and TV. This effing sucks! I hate this! My mind and body are no longer friends and do not communicate anymore.

     Ok so I wasn’t going to get into the nitty gritty but I’m a talker, I’m Italian. Just getting out of bed every day is like a Cirque Du Sole act. I have to twist turn and contort to slide off the bed all the time praying I land on my feet and not my ass. After that I’m ready for a nap. I can’t even lift or bend my own leg so I am dependent on anyone around me to help. I started in home physical therapy and oddly it has made things worse. The PT said that it is actually possible for that to happen. Shocker it would happen to me. So that had to stop.  Now we change medication, again. Now we wait for approvals, again. It’s just a huge waiting game that makes people go crazy.

     I’m going to stop here because I literally cannot form a cohesive thought anymore. With that I will say good night my loves. XOXO

Fast and Furious

          So this post can go a few ways. It can end up depressing everyone. It can inform everyone. It can inspire people. Let’s see if we can get it all in. I have so much I want to say so please forgive me if this is all over the place. Here we go!

     You’re sitting there watching TV. The scene cuts to his wife driving her car on her way to pick up her kids. She stops at a stop sign. The car moves forward and as she goes to break the car accelerates, SHE can’t stop the car. The car is speeding down the street towards a busy intersection as she tries in her panic to stop it. You’re watching in suspense. What's going to happen? Bam, cut to commercial and the power goes out. That sucks huh? I think I can help you finish this scene. Read on.

      Disclaimer: This is 100% true and not exaggerated even one bit. So I can barely move my right leg. According to my brain it doesn't exist, it hasn’t communicated with my brain in at least 8 years maybe more. The signal does not get there so whatever movement I had was purely muscle memory. As the years progressed so has the lack of use in the leg.  I have given up the majority of driving except for the once a day I have to go pick up my kids from school and to do that I need to lift my foot from pedal to pedal using my entire forearm. That too has become very weak. It’s not easy to lift a dead leg with a limp noodle, but I’ve been getting by till now.  

     So I get in my car like I do every weekday afternoon. That alone took me 5 minutes of struggling and contorting to get the right leg in. I go to move it with my arm; it was very hard to do. I pull out of my parking spot and start to make a U turn. At this point I already knew I shouldn’t be driving. I continued to the end of the block with huge difficulty trying to keep light pressure on the pedals.  3 blocks down I come to a stop sign, when I went to put my foot on the gas pedal is where it went wrong for real. I struggled to move it to the gas pedal and hold it up so not to speed down the street.  I tried to move it off so I can break again to turn but it wouldn't budge and then just fell heavy on the gas pedal. It was floored and I was doing 60 towards an intersection and I had the red light. No matter how hard I tried I couldn't move my leg. I even let go of the steering wheel and trie3d with both hands to move the leg and it wouldn’t budge. As I first realized this I started yelling “OH GOD” over and over. I have never felt fear like this in my entire life.

     When people say they saw their life flash before their eyes they are not talking about a highlight reel of their life. You literally see every possible scenario that can play out in the next what feels like an eternity but is a few seconds. All I kept seeing was the red light facing me and the cars crossing the intersection. I saw myself getting hit from a car on the passenger side and spinning down the rest of Leveret and let’s just say the outcome wasn’t a good one. After those three seconds of mental imagery and literally being paralyzed by fear I found my common sense.  I threw the car into neutral to stop further acceleration and managed to hit the break with my left foot. I stopped one car length short of the ref light. I put the car back in drive eased my left foot off the break and made a U turn and put the car in park. Then I had my nervous breakdown. One saving grace was this happened right down the street from my parent’s house and my brother happened to be there. I called him in tears and him and my sister came running.

      My worst fear of not being able to drive has come to fruition. I could’ve hurt or even killed so many people. I was lucky there wasn’t a car in front of me and no one on the streets. God literally took the wheel today. I am grateful that my kids were not in the car with me either. Today was my last day behind the wheel. It's a painful reality to accept but my glass half full is that I was able to stop the car and my life was spared and thank God my kids weren't in the car either. Again this is a completely true story. It felt and sounds like some Fast and Furious shit no joke. I'm here to tell the story and that's what counts! I am thankful for that this Thanksgiving. Good night and God bless.

A New Begining

This will be short I promise! Today I decided to start a new path. I WILL feel better. I WILL drive again soon. I WILL enjoy life more. I WILL love life more. It all starts with a WILL! It's about time I get off my potty pot and become the multitasking, OCD wife and mother I was before this bitch called MS showed up. Today I start working towards a recovery. Physical therapy, healthier food choices, good supplements. I hate my walkers and wheel chair!  I do t want to drive around Disney World in April,  I want to run with my kids around Disney!💙💙🙏🏻