sMoke and mirrorS

Magicians are a wondrous distraction to all of us. We sit there and wonder how they do what they do as we ooh and ahh at it. It’s fun and…well magical. The brain working nonstop to figure out all the tricks, there’s got to be an explanation for how it was done. Smoke and mirrors that’s all it is. The magician’s job is to amaze and amuse us by putting up a front an act if you will.

                MS patients are not much different than magicians. We live everyday with one of the worlds most baffling diseases. No one knows how, why or what causes it. As people living with MS and the daily pain and whatnot that comes along with the territory we put up a front. As I have said many times one of the worst things you can tell us is “how good” we look. Trust me we aren’t feeling so good. It’s all smoke and mirrors. We get up every morning and those of us who still can get out of bed and go about our day with a painted smile. For the majority of us it’s an illusion we work hard on.

                I was asked today more than once how I “do it” everyday with the kids, house, family, etc? My answer as it always is…I have no choice. That is the answer for most of us, we have to do it. We have kids to raise, meals to cook, houses to clean, and families to cherish. Granted I am one of the lucky ones to have help there when I need it but I do a lot of what I have to with little help. I was also told how good I looked given how bad I’m doing. I understand it comes from a good intention as well as an uncomfortable lack of response but stop telling me that. As I sat and spoke with my boss today she told me that she gave me a lot of credit for dealing with all I have been and am currently going through, that I seem to have accepted it. I said to her it’s an act…smoke and mirrors. I am a magician. I fool everyone into thinking I am calm, cool, and collected, and have a good outlook on things. LIES all LIES!!! I am good at faking it. I have a hysterical breakdown every 2-3 months or so, in private. I wake up every day and convince myself I can still do it all.

                I appreciate all the kind words really I do. If I seem nasty it’s nothing personal, I am just tired. I am tired of the pain, fatigue, numbness, questions, and having to pretend all is great. I don’t have any positive answers to “how are you feeling” so to avoid everyone thinking I am a Debbie downer or hypochondriac I hide it behind an attitude lately. I apologize, it is nothing personal. Yes I do this and yes I have tried that. I am not sitting in my bed all day doing nothing, although I would live to. So to all those who are fortunate enough to live MS free, I wish you never have to know the pain of it. Just because we look well does not mean we are…try to see beyond the smoke and mirrors.

My friendS

            So I last left off in a mindless rant if I remember correctly.  Surprisingly complaining about my pain and blah, blah, blah. Well it's still there, shocker! I do have to say I have and a few good days.  That being said school started and so has the crap. This is not why I write tonight though. I write to let people know that I am not alone in this fight with MS.  It takes its toll on the patient and all the people around us on a daily basis.
            I know a few people personally who suffer as much as I do, although they are quieter about it than I am. My one friend has a heart of gold and has been living with this monster for ten years now. Last year after Sandy hit our area she was extremely active in efforts to help people in her old neighborhood to clean up the mess left by the storm. She is a good friend of my sister's and since my diagnosis I have come to rely on her for advice and help. Seeing her running around and walking all over made me jealous, I'm can't lie.  She seemed like she was doing so well.
              Today I realized that the smiles and encouraging words and attitude only last so long. I am not alone in this fight and Coleen proved it to me today. For a person who has been so strong and great about her disease it has taken its ugly toll on her as well. I also see this in my dear friends Maria  and Jazzy as well. Coleen is the one who shocks me the most. She is always so positive and upbeat and is the person I look up to and go to for advice as far as MS goes. Coleen my heart hurts for you right now. I hate MS for what it is doing to you and all the rest of us. This is for you my friend. Feel better soon cause I need to have someone to keep my outlook positive. I'm here for you.

MiSery

        As many know I have been dealing with more than just my MS and on top of this am not able to work right now. With all I have been putting up with I have been extremely calm and level headed about all my situations, this to me is not normal behavior. Well today it all hit me like a ton of bricks and I had a mini break down moment. It didn’t last long but at least some sort of emotion finally showed up. I feel a little more normal now.

 

        Multiple Sclerosis is such an unpredictable bitch and she takes a toll on everyone and everything in her way. Kind of like a tornado. It takes a toll on the patient, the family, friends, work life, home life. It takes a toll physically, emotionally, and most certainly financially.  Between the costs of medications, co pays, medical equipment, and every day bills one not being able to work does eventually feel it. This has taken a huge financial toll n my family, immediate and extended. If it weren’t for the help of my parents and sisters I don’t know where I’d be or what I’d do. I am also tired of having to ask for this kind of help.

 

        I feel there should be an organization that is there to help patients with the everyday financials, utilities, groceries, etc. This is major stress for us MSers and stress does not do well for our disease. I would love to start some sort of organization or do a fundraiser to help with such things. I have been denied Social Security twice now. Apparently having a crippling disease is not severe enough to give me the money I have worked for. No no lets give it to the lazy crack heads that’s more important. I have applied yet again and I am asking for prayers that they finally accept me. I need to live and unfortunately am to sick still to work every day. My head was just floating above the water now it’s up to my eyes. I am close to drowning.

 

     There is the financial toll, now for the emotional toll. I have spent the majority of my summer in my house with my two kids because I can’t take them out alone. The stairs are not easy to go up and down, and if I do make it to the front if one of them gets hurt I cannot run to them or pick them up. I think I need a face book hiatus, as if this doesn’t upset me enough that my kids have to live like this I see all these great vacation, beach, and park pictures and makes my depression that much worse. I all these “friends” on face book but yet I sit home alone with the kids all day every day. As for those rare days I feel ambitious enough to try to drive to one store or sit at the park with the kids and one of my siblings, it puts me in bed for the next one to two days after.

 

        Like I said it all hit me like a ton of bricks today. It is very hard for me now to hide how frustrated, upset and depressed I have really been. I feel useless to everyone especially my children. I hate that the words “mommy one day when you feel good can we…?”  It breaks my heart that this is how they are growing up. Once again if it wasn’t for my sisters who take them on little trips they would never experience anything lately. Everyone has problems and these are mine.

My problemS

                Everyone has their own problems in this world today. Nobody has a perfect life. If you say you do you are huge liars! Some problems are worse than others and everyone is entitled to feel that they have the worst at this point. I am going through some crazy ass shit right now but I try to see positive to keep me going. I have MS, I have 2 beautiful and healthy boys that make me smile; I have to use a walker, I got a brand new set of wheels. See what I did there??? I really try very hard not to be negative, but it isn’t easy as I’m sure most of you know.

                I also try to be a good mother, wife, sister, daughter, niece, and friend to everyone. My ear is always here to listen and give advice. If you are not going to take it then please do not waste my time. I believe everyone is put in and out of your life for a reason. It is a constant revolving door of people lately. I have come to a conclusion that God thinks I am Atlas, strong enough to deal with tons of shit in my life and everyone else’s problems. Just call me Dear Abby. I am so stressed and so weighed down I think that might be the reason I am not getting any better, the world is heavy man.

                So we all know my issues that have been ongoing blah blah blah. Now I have a new toy, my walker that comes in a million pieces. Not good for a person who can barely hold a utensil. When in doubt call daddy! It took me forever to start using my cane everyday and now this. I am convinced this is more than Multiple Sclerosis. No new or active lesions for two years yet my legs, arms, and back are deteriorating. I am embarrassed to use the walker. I feel like people look at me with the cane and make comments now; oh look at the fat ass that needs to use the walker because she doesn’t want to lose weight. Trust me so far from the truth. Yes I am over weight but I’m not 400lbs like I make it sound, I exaggerate for effect. If I could walk on my own without stumbling like a drunken sailor or falling like a new born bambi I would be at the gym and looking hot. Those who know what I look like you all know I would be a knock out if I was skinny. Anyway there is also my issue of needing to find a cheaper place to live because I cannot work and social security is a joke. So these are my problems right now, yesterday, today and till God only know when. I try not to dwell on it and hide my stress very well because this is the hand I have been dealt and crying, screaming, eating, getting depressed is not going to change that hand. I found an outlet and it is my writing. I don’t like to speak to anyone really id rather write it down that way I can talk to everyone at once. Everyone has problems, some worse than others. These are mine and they are the worst to me at this time and that is what occupies my head. So I apologize to everyone I am not giving a shit to it’s nothing personal, I’m just trying to keep myself from being crippled too early in life and out of the poor house.

Mindless thoughtS

               It’s now the end of July and I am still home on disability. Still no relief in sight, I have tried a new medication which was a week of self injections. We all know how Susan loves these types of medications. I have become so used to shooting myself that I might as well become a heroin addict maybe that will help. So far the majority of my summer has been spent in my house and two thirds of that time is spent in bed. I tried a couple day activities with the kids and everyone had fun but mom who suffered silently.

                I understand that MS is a very complicated and unpredictable disease but I have been feeling worse than ever lately. Since my diagnosis in 2009 I have had some things get better like the entire middle of my body being numb while at the same time certain things have been getting progressively worse. My MRI’s come out with nothing new or active in my spine yet my legs are weaker than ever, I cannot walk without assistance and as of today I cannot stand up for more than a minute before my legs start shaking and give out on me. The muscle tone in my right leg is so bad that when I drive I can barely push the pedals. I have been and still am on so many different medications that you would think I would feel better. I think my Dr. thinks I am crazy at this point. I also feel like he has no clue lately due to the fact that he is free of MS. All of these issues and progression with no new lesions or active ones makes me think it is way more than MS.

                MS is an auto immune disease and starts in the brain. My immune system is actually the total opposite of what it should be. I am a ridiculously fast healer and very resistant to infection which is not the norm for MS. I also have 3 nonexistent lesions on my brain and a spine riddled with them. A person knows their own body and when you think there is something wrong usually there is. I have been researching on the computer and to me it seems more neuromuscular than autoimmune. Wait till my Dr. hears this come out of my mouth. I know stress, heat diet, yadda yadda yadda affect the MS but I have been eating different, staying inside in the AC and as for stress like I always say everyday life is stressful for everyone.

                As everyone can tell from reading previous blogs that I write about my entire life, I hide nothing. I also would like to reiterate that the reason I started this blog was give people a glimpse at the life of just one person living with MS. I have been doing a lot of thinking lately because that’s all I can do all day. I still manage to take care of my family and my house. I go out and do what needs to be done like food shopping and banking, I never go alone anymore and just one shopping trip does me in for the whole day. So my thinking is lately that nobody believes me due to all this. I guess the fact that I use a cane all the time and walk like the humpback of Notre Dame means nothing. Apparently I have been given the incredible gift of hiding and dealing with stress and sickness extremely well. My life has been o constant downward spiral as far as finances, health and relationship goes. With everything that goes on (I will spare the lengthy details) I walk around very well adjusted and normal. To me this seems abnormal. I feel like I should be going crazy or something. I have no time for useless nonsense or everyone else’s crap being piled on my own. Everyone has their problems but right now mine seem like they are the worst to me and no offense I don’t care about anyone else’s shit.

                This particular blog was not so much about one specific thing but more for a much needed vent. I did not get it all out but enough came out for now. So to recap, I am still felling shitty and getting worse by the day, I am still too broke to pay attention, my marriage is still rocky, and apparently I am going crazy now (at least in my own head). Hey I gotta keep on truckin though and I do it all for the loves of my life and the reasons I breath, my boys <3.

My purpoSe

     Hello friends, it’s been a while. A little too long I know. I have been going through some major life issues.At my ripe old age of 33 I have gone through what seems like a lifetime of stress in one year. My boys now 6 and 3 ½ are more rambunctious than ever to say the least. My husband, at this time is still my husband although there was a period where that was questionable. As for me, I am currently out of work on disability and getting worse. I am also fighting my “critics” who do not believe my illness exists. Now that we are all caught up on my life thus far let me begin. My purpose of this blog was to educate and inform people about Multiple Sclerosis from one person’s point of view.

     I am going to repeat myself for all my skeptics out there, every and I mean every case of MS is different. You can have 50 people with the disease in front of you and not one of them will have the same as another. Sure some people will have an issue or two in common but it still affects us all differently. Ok now I will say even further to the ignorant people who continue to remain that way, MS is nicknamed the “invisible” disease due to the fact that the pain, weakness, numbness and so forth are internal. So to the dumb asses that have recently told me I don’t look sick read up on your shit!

     Let me break it down people. I am home all day ALONE taking care of my kids while my husband works his butt off to make ends meet while I am relapsing. Yes it is my first official relapse. I write my blog and post on FB to vent and inform, not for sympathy. Trust me I don’t want it from the hypocrites I know. Writing about my life helps me cope with my every day struggles with MS. I wake up in the morning to get my oldest ready for school and half the days I can’t move so my mother or sister takes him to school for me. After he leaves I lay down for a little longer till the head to toe burning bone and muscle pain subsides enough for me to stand for more than 60 seconds. I take care of my youngest all day dressing him, entertaining him, making his daily meals. While doing this I clean the kitchen, do the dishes, vacuum the house, make beds, etc. I pick up my son from school, do homework, make dinner, clean up some more and referee the two animals I have as sons. This is a typical day for most stay home mothers and they will all tell you how difficult it is to do at 100% health. Now let’s add a cane, 100lbs to each arm and leg, stiff neck pain, spinal pain, weak hands, and incontinence and bowel issues. Welcome to my world, it is a blast.

     I very rarely call on anyone for help because I don’t like to. I struggle just to stand up but I do this every day. When I do ask for help you know it’s that bad. I am thankful and lucky to have the support system I do with my husband, mother and sisters. They are always there when I do ask for help. People always ask if I have help and I tell them it’s there when I need it. The next question is usually how do you do it every day? My answer is I have no choice I have two young children to take care of.

     Now I’m not gonna lie I suffer more then I let on and lately I have been letting it show more and more. I wake up and need my husband to help me walk to the bathroom cause I have no feeling in my right leg. I walk with the cane all the time now and it does nothing, next step is a walker cause I cannot walk from the car into a store without crying inside. After going to one store I need to go home and rest. Stairs are my enemy. I leave my house when absolutely necessary simply because it takes too much mentally and physically for me to do anything.

     I welcome my newcomers into this current glimpse into my life and welcome back my followers. To the skeptics and haters please don’t bother with me anymore. If you cannot have half the brain to comprehend what people with MS go through then you are not needed in my life.