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!💙💙🙏🏻

Change

     We all go through changes in life. Some good, some not so good and then we have those unfortunate devastating changes. We all go through puberty so that’s one change everyone can count on. Although it seems bad at the time it really is a good one. I’ve gone through so many in my life I feel like I’m forever making cocoons and emerging from them. Definitely not always a butterfly though.

     I went from being the youngest to being the quintessential middle child. I changed from an extrovert to an introvert back to an extrovert. Elementary school was typical and fine. Puberty set in as I started junior high and from then till my senior year of high school I was the quiet, awkward “fat girl” of school. College I didn’t give a shit what anyone thought about me and joined a sorority. After college I hit some dark times then met my husband. I went from single, to a girl friend, to a fiancé, to a wife then finally my greatest change to a mommy.

     Nobody likes change especially an overly organized, clean OCD person like me. The last seven years have started the biggest and to me the most devastating change of my life. I was diagnosed with MS. At first it was relapse and remitting and now as of today I am in the Primary Progressive category. Not a group I cherish being part of trust me. I have been on a slow and steady decline up till the last year or so and especially now; we’re in the fast lane.

     My life has been turned completely upside down. I would get up and start my day, taking care of the boys, cooking cleaning. Jumping in the car and running errands alone or with boys in tow. I did it with no problems at all. Today, I wake up and at least I can say that much. I went from multitasking to barely being able to dress myself. Simple everyday things like brushing my teeth have become difficult because it’s hard to hold the toothbrush. Doing my hair falls into the same category. My hands are extremely weak. Cooking is minimal. A typical meal takes me longer than it used to. I gather my ingredients and utensils into the basket on my walker, sit at the kitchen table and prep. After that I roll it to the counter and sit at the stove and cook. Stirring is not happening and making a pot of pasta while home alone is nonexistent. I can go on and on but I won’t, you get the point. Same goes for cleaning. I cannot even stand long enough to vacuum, that is if I have the strength to push it first.

     I don’t like help, I don’t like asking for it, and I don’t like needing it. A bitter pill I have had to finally swallow. The worst part of this change is that it has taken away my freedom. I can’t drive but I do once a day because someone has to get my kids from school. It takes me 15 minutes to get from in my house to in my car. My right leg is almost completely paralyzed. Again I can go on but you’ve heard it all before. I went to my neuro today for a routine visit and was told that none of this is going to resolve and I am going to continue on this little journey of change. I cry every day; I have become an emotionless shell of myself literally existing only for my kids. I’m pretty sure I almost made the doctor cry once or twice, I know it got my sister. I try my hardest not to let the pain and stress show but I’ve reached a point where I can’t do it anymore4. I don’t want sympathy. I’m not trying to make anyone cry. Writing is therapy for me and as I’ve always said I write to inform.

     I’m informing everyone that I am very sick. I’m informing everyone that I am very tired of fighting against something I can’t beat. I’m informing everyone that I feel like shit mentally, physically and emotionally. Yes I have changed and no it’s not pretty this time but this is the reality that my family and I have to live with everyday. So on to my next therapist appointment, on to my next treatment, on to my next assistive devise. I apologize for the buzz kill blog today but I cannot change how I am feeling about what I am going through. Feel free to pass my story on to help others. Peace out cub scouts. Like Arnold said, “I'll be back”. XOXO

Acceptance

     Acceptance it’s hard for a lot of us to deal with. These days people are not very accepting of many things. When I was growing up I never ignored another kid because of their skin color. I never even knew what religion really meant. All I knew was that people came here from different countries to make one great country, The United States of America the key word id united. Sadly we are not united as a country anymore which makes me sad. Sad that the world has gotten this cynical and sad that my kids have to grow up in a world that is un accepting of so many things. I keep my political, religious, sexual preference; race opinions to myself because they are mine not everyone else’s. The sooner people learn to do this maybe I can be more accepting of the world I am raising my children in.

     That being said acceptance is a hard pill to swallow. I have been struggling with it for quite some time now regarding my own illness. I have uttered the phrase “I hate having this disease” through tears more times in the last week then I ever have. The last seven years I have been struggling to accept the fact that I am sick. I look at others with MS and see how well they are doing and think to myself that if I keep pushing myself I’ll be ok too. Nope so not the case. In fact it’s the opposite the more I push the worse I get.

     I am sick. I have Multiple Sclerosis. I am losing my ability to do simple everyday things. This is a pill the size of Cleveland people. I finally accepted this today, I’m not happy about it but I accept it. I accept the fact that if I want to be able to drive I need to have my car modified. I accept the fact that I need a stair lift because I cannot walk up into my own house in less than ten minutes. I accept the help I need from my family and learn to ask for it more often. I also accept the fact that in a way I am alone in this fight.  

     No one can truly understand what I live on a daily basis. All this acceptance sucks ass! I hate the letters MS. I hate that I am just forced to accept my fate of rapidly degenerating. Depression does not even begin to describe my emotional status. I am in fact emotionless. I speak to no one. I hardly leave my house. I don’t care that I no longer have friends and don’t care what people say about this either.  I know there have been a lot of Debbie Downer blogs latterly but this is my only way to release it. I do not wish this life on my worst enemy. 

This is Me

          Ok so this blog is roughly five years old. I started writing this as a way to cope with the new life i was unwillingly given. I also started writing because I was getting a lot of questions from friends and family about MS, so I decided to give them a glimpse into the life of one person living with the disease. Multiple Sclerosis affects everyone who has it completely different from anyone else. Its basically a coture disease, lovely but I'd rather have a one of a kind bag instead. Anyway as I said this was a way to cope and it has helped a lot. as of lately though not much has been helping me feel positive about my future.You see some people are diagnosed and go their whole lives without symptoms, others progress so rapidly they end up in nursing homes to be cared for. Me? I'm in the middle i guess.
          I was diagnosed officially in October of 2009 with Relapsing Remitting Multiple Sclerosis (RRMS) which 90% of people with MS are diagnosed with. I am now in between Secondary and Primary Progressive MS (SPMS, PPMS). My disease has technically been in remission but I'm also steadily progressing. Confusing? Oh yeaaa. so here we go, try to follow. MS is basically your immune system attacking your central nervous system; brain, spine, and optic nerves. Essentially my body is fighting with itself. So what happens is T cells eat away at the myelin which is what covers all nerves and axons. Think of the rubber covering a wire wearing away and exposing the wires. This causes lesions. Now typically MS starts affecting the brain before the sign but shocker I'm not typical, my lesions are all up and down my spine. When it hits the brain it can cause cognitive issues and optic issues among other things. Once it starts in the spine we have more physical issues from tingling in the fingers to paralysis.
          This is me. I am going to lay it all out for y'all. lets start with pain. I have pain from my neck down to my toes. I feel it literally in every bone, muscle, ligament and joint. Head aches, I've had one for three weeks now. Arms, they're fine for now but my hands are a different story. Grabbing things like utensils, pens, change etc. is beyond challenging and when I do have something in my hands 9 out of 10 times I drop it cause they are too weak to hold a lot of things. Now my legs, oohhhhh those legs of mine. They're sexy but that's where it ends. I use a walker all the time and a wheelchair at times also. I have three walkers, each serves a different purpose. My legs are so weak and heavy that the only way I can describe it is if Tinker Bell had elephant legs. It would be pretty hard for her to move them without that pixie dust. I cannot stand up unassisted or for more then a minute or two. I need help standing from a sitting position. My right leg is pretty close to paralysis at this exact moment. I have to lift my right leg to get into bed on the couch or in the car. Driving is rapidly going to become a thing of the past for me. I have to move my leg with my hand from pedal to pedal and hold down on my knee to make sure the break stays down. If I have the option of not driving I use it. I only drive when absolutely necessary.
          So those are the visible signs that people can notice just by watching me take two steps. Now here it goes, i'm going there. The internal issues. Lungs, yes they are affected. It sometimes becomes very hard for me to take a breath in and it happens with no warning. My bladder, intestines and bowels are all screwed up too. I am on medication so I don't pee my pants, but i still do. My intestines do not absorb water leading to bowel movement issues which I also take medication for but shocker not helping much either. I have little to no abdominal and pelvic muscle control so I cant feel when i need to pee nor can I hold it in and on the other end i cannot poo when i need to. That's not the TMI moment, this is...I am 37 and i have to purchase and wear adult underwear whenever i leave my house. Finally I am all sorts of screwed up mentally from all of this. I do not leave my house unless absolutely necessary. Why? Just reread what I wrote. Some of you get this some of you never will. I am very sick believe it or not. If you miss me you know my number and where I live.
          This is where I'm at right now. I hope some of you understand a little better what I'm dealing with on a daily basis. I could go on and on with the mental and emotional toll it is taking on me and I will not even dip a toe into how my kids, husband and family are dealing with this, that's a whole page in itself. Enjoy the rest of your summer my peeps.

New treatment

     So on April 25th I had a 6 hour infusion done. This is my new medication. I sat there with my parents all day hooked up to an IV. I'm not gonna lie I'm not100% sure what type of medicine it is. I heard it was a type of chemo, I heard it wasn't, I've also heard its used in chemo but it isn't actual chemo. I don't know I've read and heard a bunch of different things from the doctors and nurses. Anyway all I know is there are 2 hours of preventative melds pumped into me before the 3 hour medication and a half hour flush after. One of the pre meds made me sleep for a while but no reactions or side affects which was great. My second treatment was 14 days later which was today. It hit me hard today, I slept Thea entire time and it made me feel a little sick today.

     So within the two weeks between my treatments I guess I was hopping for some sort of miracle. No such luck. I'm still getting worse day by day and last week was probably one of my worst weeks in a long time. If I don't start feeling better in another week or so I have decided to go back to the doctor who originally diagnosed me with MS. 

      I am a firm believer in a person knowing their bodies. I knew I what was wrong with me before I got an official diagnosis. I have also been feeling that what is wrong with me is something beyond MS. My doctor tells me it"100% is MS" it's progressive he tells me. He also changes his answers with every visit. I gave him one last chance with this treatment. Lets just say I'm not hopeful. I've been on a lot of different medications in the last six years and I still feel like poo. If your doctor doesn't listen and meet you half way it's time to move on people. I like Dr. Howard but I'm afraid I might have to move on.  So my point to this is that I now have two treatments down and this is the final try.

FEAR

Fear...it lives inside all of us in some shape or form at one point in our lives or another. I know fear, I live in fear everyday. I also know it's friends pain, anxiety and depression. If you are looking for an inspirational win one for the gipper post this isn't it. This is a slap in your face dose of reality kind of read. So let's begin. Shall we?
     My health has been on a steady decline for the last year. Today I have reached my cry, scream and hate the world point. My husband helped me out of the shower, dried me off and helped me onto my bed so my body can recover from my shower. The simplest thing is no longer simple for me. I am saying with complete seriousness and no exaggeration that I feel like I am slowly becoming paralyzed. I mean physically, mentally I've been there for a while. I have the hand strength of a new born, my right leg is almost completely useless to me and now the left one is joining in on the fun. I have horrible balance, no muscle feeling or control in my abdomen and pelvis. The muscles in my entire body spasm at any given moment and Otis so painful and uncomfortable. I have issues breathing, swallowing ,thinking, my skin crawls. I fall at least once a week. So fear, yes I live it.
      I wake up and hope I don't fall as I try to get out of bed. I have to pee and I pray I can hobble to the bathroom in time. I have to leave my house and look down the flight of stairs I have to walk down and pray I don't fall down them. I make deals with my body when I get in the car to drive cause I have to make the sign of the cross and start the car. I come home and it literally takes me five minutes to drag myself back up the flight of steps I prayed I didn't fall down. I walk outside and wore with every step that I'm going to fall and hit my face on the concrete. By the time I reach my destination I'm exhausted. When anyone sees me I use all the energy I have to hide all this and make myself look normal.
      I know when people see me they might think I'm a Debbie Downer, hypocondriact a constant complainer so this is why I am as quiet as I am. When asked how I'm feeling it's always the same answer and even I get tired of hearing it. We all have things going on in our lives I am well aware of that, again the reason I keep quiet and do not socialize anymore. I'm sure there are people worse off than me and God only gives us what we can handle but for me this is my worse this is more then I can handle. I am throwing in the towel, I surrender. I have the best support system in my family and friends. I hear how much they give me credit for doing this, and how I am the strongest person they know, and how special I am to them. This support is why I am still fighting nut honestly I'm tired of this fight right now.

       I'm off a lot of medications and started a new one. I had my first treatment a week ago and so far no difference, still going down this hill. I'm nit special, I'm not the only person on earth with MS but I am a voice for people who want to know. I say it all the time every case is different this is just my personal battle with MS. Personally it's a shitty battle. Fear, we all know it and these are just some of mine.

MS rap

          Ambien,  Arthrotec,  Baclofen, Cymbalta, Gilenya, Invokana, Klonopin; Librax, Linzes, Prevacid, Toviaz. Viatmin D3, Biotin,  probiotics, Ibuprophen.  Irritation,  constipation, numbness.  Lack of balance, lack of strength, lack of coordination.  Incontinanace, insomnia, constant  anxiety. Hard to breath, hard to see, hard to think, hard to remember.  Dr. Howard, Dr. Bruno, Dr. Mustachiuolo. Dr. Yu, Dr. Son.g, Dr. Rampersaud. Neurology, cardiology, ophthalmology.

     The first paragraph reads like a list or in my head a rap. It’s not. It isn’t a rap and the names aren’t rappers. This is a list of medications I take every day 18-20 pills a day. Some of the doctors I see to treat the multitude of issues brought about due to the MS. At the young age of 36 no one should have a list like this but unfortunately I do as do many other people living with debilitating illnesses. This is not a poor me blog or an I need sympathy one either. I walk around with this list going through my mind all the time and figured hey let me spill a few ill rhymes. Ha-ha see what I did there?? I get through life with the love and support of my family as I always say, but I also use my writing and humor to get me through the really hard times…and shopping. Retail therapy in my opinion is the best therapy although m y husband may disagree. I can go through every medication and explain what each is and what it helps but honestly I don’t want to. I will just say that the list of symptoms is longer then what is here.

      I say all the time that we come into and leave this world pretty much the same way. In my observation as old people we end up Almost as babies again. We need diapers; we need help eating, walking, bathing, holding things, and everyday life. For the people fortunate enough never to end up as a baby at the end of life well they are the lucky ones. It is unfortunate however that I am at that stage of life once again. I need help with so much that I used to take for granted like showering, being able to run to the store, holding a fork to eat,   the simple things.  Let’s just say I need adult supervision. I say that I write to inform. This is my own personal account of living life with progressive MS, every case is different. I received a small glimmer of hope recently and will enlighten everyone further r down the road. And no I’m not pregnant although I wish I could be but I’m not. I hope you all enjoyed my MS Rap. Sleep well my chickens. 

some More thoughtS

     So I feel the urge to write once in a while but it’s been about a year since my last entry. I always read my previous entries and notice that the last one almost says it all. I add this to though, lets multiply last year by 10. I also add that my MS is progressive and boy is it. I walk like Quazy Motto, dragging my leg. I have a “dead leg” or at least that’s what it feels like the leg of a corpse. When I am able to walk it drags making me trip over the natural texture on the street. I also sleep 78% of my life away. My internal issues have worsened and now we are expanding to the lungs and brain now.

     MS is dubbed a “snowflake” disease. This is just one of the many nicknames it has been given. It was given this name because like a snow flake no two are alike; the same holds true for people with MS no two cases are alike. I know about ten people with MS and not one of our cases are the same.  What works for one might not work for another. I try whatever I can within my means to feel better. The sad truth is nothing helps. The research and treatments is also lacking when it comes to Progressive MS. BTW that’s the type I have.

     I will stop here because I cannot organize my thoughts enough to write and my hands are not cooperating. Next time I will post an unedited version of what I write to show how hard a simple task like typing is for me.  Again I don’t write for sympathy I write to inform. Please feel free to read older posts and ask any questions.