MyStery

             So I have noticed today that there are many mysteries in this world of ours. Even the simplest things like a pen can become a mystery to us. Some might even say they are surprises. Let me clue those of you who don’t know in…I absolutely hate surprises. I’m not a fan of mysteries either, sorry Scooby. I do not like the unknown. I need to have everything planned out in advance. I even found out the sex of my children before they were born. I can’t do it, sorry no way no how. So it is as I was noticing all this mystery in my life that I have come to the reasoning behind the way I have been feeling lately.

                I say it often…I hate MS. This is perhaps one of the biggest mysteries in my life right now. This disease that has no known cause and no cure in sight. It is a very uncertain way of life. Literally waking up every morning wondering whether or not I can function somewhat normally. My life is an open book, the best mystery you will ever read. It is so hard to make people understand how bad I am actually feeling because nothing is visible…unless I am using my pimp cane. Let me break it down for you. I wake up every day and stumble out of bed cause my right leg is not awake yet. I walk with a limp cause the pain is in every muscle, bone and joint from waist down. I get my kids dressed; myself ready for work, make lunches and leave the house to work a full 8 hours like a normal person. I sit at my computer running files, crunching numbers, and sometimes talking with my coworkers. By 10 AM every muscle in my arms and hands are on fire and cramping. I keep on doing my job without letting on how bad my pain is. Three out of the five work days I suffer from an all day headache. I get up from my desk occasionally to do things around the office and as I stand my spine cracks from top to bottom and that darn right leg is asleep again. So lazy. I come home to my two rambunctious loves, do home work, make dinner, and clean the dishes, baths and bed. Then wait up till my husband comes home. By 6 I am no longer able to even stand for a minute.

                This is just a glimpse into my daily routine. I suffer in silence and nobody can tell me why. So yes this is a huge mystery. When I say I am not feeling well trust me don’t judge me. Just because I look fabulous does not mean I am not legitimately sick. My spine is full of lesions, if it would help people get a better idea I will carry around my MRI films for you. My MS started in my spine and is slowly moving to the brain. Usually it is the other way around. If you wonder why I walk funny, or can’t pick up a piece of paper or a pen this is why. All my limbs are affected. I have horrible coordination and very weak hands. I hope I have helped some people somewhat understand the mystery of MS as well as the wondrous mystery that is Susan.

MS

               I have come to a conclusion that some people will always be blind to things no matter how much you show it to them. So where am I today? I am feeling so much more like my old self as I have been saying, but this doesn’t mean I am totally unaffected by symptoms of MS. I have said it numerous times, the one phrase that gets me is when someone says to me “but you look so good”. Thank you I know I do, I always have. LISTEN TO ME...just because I look it does not always mean I feel it. Let us not forget that MS is known as the “invisible disease”. I have come across some very ignorant people when it comes to this fact. They refuse to believe or open their eyes to this truth. Unfortunately I am stuck with a couple of them and I am not thrilled about it.

                Let me break it down for those people. I walk better, but I still cannot walk long distances at once anymore. I can write and type, but I am very slow at it now and it is difficult kind of like wearing boxing gloves while doing it. And yes although my Neurologist tells me how stunning my brain is there still are a few lesions and lots of them on my spine so this delays the signal to my brain telling it what to do. My short term memory is almost nonexistent. I have permanent tingling in both my hands. And let’s not even start on what stress does. Point is yes compared to three years ago I am doing fantastic, but I still have daily issues and I get tired easier now. I hide it all pretty well I think. I have no choice if I want to live a normal life. So now I say with these flaws I am not perfect nor am I a robot, nobody is perfect. We all make mistakes and if you are that special person who doesn’t then congratulations to you, that is not me.

                I know plenty of people living with MS that have these same issues. It is sad that there are still people that actually judge by what they see on the outside. Maybe if we wore a sign everyday to remind these narrow-minded individuals they might change their attitude, but not likely. I actually get vibes of jealousy from some people. Trust me if I could trade places with you I would. I would love to give up my pill regimen, daily, weekly or monthly injections, constant MRI’s blood work and doctor’s appointments. Still green with envy? How about taking those days of extreme weakness, pain and fatigue away from me. I will gladly give it up without remorse. So I reiterate, yes I am feeling well but I still have issues so please open your minds and take that into some consideration when forming your opinions.

reMiSsion!

               So I am in the shower before and totally upright this time and I was thinking to myself. I don’t want to say for fear of jinxing it but I have been feeling a lot better lately, almost like my old self. I said almost…I still have some issues but nothing compared to two and a half years ago. In October it will be three years since my official diagnosis of having MS. I have come a long way in that three year span.

                I have finally reached the point of acceptance with my disease. Yes I complain A LOT, but those of you that know me well know that I’m not happy unless I am complaining about something. That’s just me. I realized that instead of working against MS and being angry about it is worse than the disease itself. I am slowly making the necessary changes I need to feel good. It has been a long road physically and mentally to reach this point and I still have a long road ahead but I am willing to walk it every step of the way. It has been with the help and support of my family and friends that I am here now, like my sister making me walk all over the campus of our younger sister’s college instead of taking the bus around. Thank you. Of course my boys are a huge part of this also, I love you to death.

                I have been writing this blog for about two years now, its purpose has been to inform. I am giving people a very small glimpse into the world of MS. It is different for every person living with it. I try to look at my case with a bit of humor and think I have done well so far. I know now that this is my life from here on in and how I choose to deal with it is what will make the difference in how well I will live. So far I think I can say that I am in a true remission and I intend on staying this way for a long time. As I said I write to inform and entertain and I hope so far that you all feel I have done this. This is not a good buy blog I was just feeling inspired to write. T.T.F.N

Major Slip

           So as I say almost every time I write something that I only write when the bad stuff happens…and it’s mostly true. The whole point of this blog is to inform about Multiple Sclerosis. So here goes. MS is one of the most unpredictable diseases out there. It affects every person living with it differently. The majority of us very rarely show signs of our disease which always prompts my favorite phrase “but you look so good”. I hate it.  Anyway along with MS comes so much fear and uncertainty in your life, more than normal. One of my biggest fears is falling. I have fell numerous times already but none were that sever and I was able to catch myself…until today.

            Today I woke up around nine A.M. like any normal Sunday. I laid on the couch for a little watching my kids play and talking to my husband. I then went into my bedroom and rearranged my closet and drawers. Sounds thrilling so far don’t it? I went to take a shower around noon. I turned the water on and stepped in with my left foot and felt a little unsure of myself. I lifted my right foot over the tub to step in the shower fully. As I put my foot down it forgot what it was there for, support. My leg went out from under me and I slipped and fell. As I am going down I hit the left side of my face on the soap dish, twisted both my knees, ankles, and back then landed on the right side and slammed that part of my head and body on the edge of the tub.

            My biggest fear realized today. It was one of the scariest moments in my life. I had no major damage thank God. I do how ever have a few bruises on my head and face, a head ache, and I feel like I was hit by a Mac truck. I am thankful there was nothing broken and no major head injury. This is what I mean when I say how unpredictable MS is. I woke up and was fine and moving around without a problem and one tiny second beat the crap out of me today. After all was said and done I was able to walk down a few blocks to my mothers and back home again.

My Stomach

             Ok so since we’ve last seen each other I have been to a few doctors and had a few tests done. I went for my MRI’s…again and made it through the whole thing this time. Happy yes, but my buddy Joe was not there to tend to my every need. The really sweet girl at the desk was there though and she definitely remembered who I was. She cheered me on like an NFL cheerleader man. How can you not go through with it with that kind of support? So I remembered to ask for music this time and with the help of Bob Marley and Destiny’s Child annnnnd 2 valume I did it. She was so proud of me the girl at the desk. LOL. It was very sweet of her to give me her moral support and for that I thank you front desk girl. So later that day my Dr. called me with some good news finally. No active lesions, no new lesions and there was slight improvement. I was so happy to hear this news.

                Now the swiss cheese brain is out of the way onto the liver, stomach, and lungs. The liver is fine; the 4 month rash had nothing to do with my liver. The gastro actually chuckled a bit when I told him that my dermatologist thought it could be from my liver. I still need MORE blood work and a sono but I am in no rush for either. Next the pulmonary. Who would have thought I would get answers to my stomach issues from? Not me that’s for sure…but I did. I have been having trouble breathing and heaviness in my chest for a while. My heart is fine so it isn’t that. My PFT (pulmonary function test) was perfect, blood pressure down, and lungs sound clear. The nurse asked if I had a recent chest x-ray so I told her I had a pre-op in February so she called for a copy. The Dr. looked at my test results and asked why I was there so I told him. Then he looked at the chest x-ray and asked why I had it done, so I told him. He then proceeds to tell me what it said, which no one else did. Apparently my lap band has caused more trouble than it’s worth. He tells me that my stomach and esophagus are up in my chest along with a hiatal hernia. He then proceeds to tell me all of my symptoms before I could tell him. He hit the nail on the head. My duodenum is pushing on my trachea and that’s why I can’t breathe.

                So something to help fix one issue caused a whole bunch of new issues. It’s never a dull moment. He also said that unfortunately this could be a permanent problem. GREAT! I have enough permanent problems; I would like this one to go away. The treatment, eat standing up…yes like a horse, stand for twenty minutes after eating, and you guessed it more medication. At this point my pill case is looking like a bag of skittles. A change in diet as well, no chocolate, caffeine, tomatoes, lemons, anything acidy. He’s trying to kill me I tell you.   I need to repeat the x-ray in October and hopefully my stomach drops. Who says that in a normal conversation? I do apparently. Hi I’m Susan; my stomach is in my chest. Only me I guess. If it can happen, it usually does. SO this is where I am at as of today. Happy trails everyone.

Mri'S

So today I took a day off work to go all the way into the city with my father for my MRI’s to be done. I took my daily medication cocktail when I woke up as well as a klonapin to prepare my nerves. We left the island at seven A.M. and made it for my appointment on time. I registered and filled out the same paper work I have filled out for the last two years. I took another pill to calm myself even further. I was called in to be prepped for the test. I have been doing this for so long I don’t need to be told a thing anymore but Joe decided I needed to hear his script. Joe did not get that I was in no mood to hear it and trust me anyone else would have gotten the hint. So I put my gown on sit and wait for the room to be ready. Joe called me in and explained that this was a brand new machine, top of the line, wider and shorter tube. Even though it had track lighting it still looks like a coffin. So they take my glasses, ask me to lie on the oh so comfortable metal slab, put on my stylish ear muffs, put the Hannibal Lector cage over my face and hand me the “oh shit”button.. All this makes for a very comforting feeling. As Joe is doing all this I am trying to keep my mind on other things and eyes closed. They roll the table into the machine and leave the room. No warning the lovely head banging noises begin.

                The last two times I had my tests done I was heavily drugged on valume and I also had somebody telling me everything going on. I was even given mood music. This time I had no music, no comforting step by step and no valume, just klonapin. As I hear each sequence begin I try to think of things other than the tube of death I was in. I was good for a while. Then it happened, I had bad images pop in and out of my head, my chest got tight and breathing heavy. OH NO…MAY DAY MAY DAY! I tried everything to calm myself and then it happened, my hand involuntarily squeezed the oh shit button. It was over. The full time I was in there 10 whole minutes. I have learned today which medications truly work best for the major anxiety I suffer from. If I could be completely sedated for it I would be.

                So I walk out and let my father know that we made a wasted trip to the city and I got the signature daddy eye roll and head shake. Oh well so much for thinking I was able to do it. Unfortunately I do need to go back and have the test done next week because I am reaching a point of not being able to walk or drive again. So the test is rescheduled for next Friday and I will be there with the proper

My public Service announcement

So nobody ever said life was easy…ain’t that the truth. I understand the hard work it takes to get through normal everyday life for all of us.  I never put myself above anyone else or say I am better then you. I can say this though, I have to work just a little harder at life then some people do. I have been in deep thought the last few days and have been realizing a lot. I have also been very down lately which has led to my deep thinking. I am officially stating that all the dead weight in my life has got to go for good. People who think they are above the rest of us have no room in my thoughts anymore. I am thankful for my family and friends who love, support, and help me when I need them most. The rest of you can kindly kiss my semi-crippled ass! I am no longer there for you to use and walk all over. I refuse to let the fact that you pretend to still care in case you need something down the line bother me any longer. I am a good person with a good heart and good intentions. To those of you that have taken advantage your time will come, leave me alone now. I have bigger and better things to worry about then your feelings since you never took mine into consideration…ever. Say what you want behind my back cause sticks and stones people, sticks and stones. I like the high road, the view seems nicer from up there and that’s where I think I’m gonna chill for a while.

                Ah I feel so much better now that I finally said what I’ve been holding in for so long. Anyway I am feeling compelled to cleanse emotionally and spiritually in hopes it will help me physically.  As I have been saying lately I have been feeling crappy again. Today has possibly been my worst day since I was diagnosed. I am currently in bed writing because I am no longer able to stand or walk at this point. The pain running through my body is so bad that I actually took a pain killer, and for those of you who know me know its bad then cause I hate taking prescription painkillers if I really don’t have to. Things are slipping through my fingers…literally. My hands are numb and painful. My joints, bones and muscles hurt from top to bottom. I can’t stand straight or walk without holding something or someone and that’s only if the pain in my knees lets up enough for me to actually stand. I think the only part of me that is ok for now are my feet; it’s the rest of the support system that is failing.

                Despite all these feelings that have peaked today, I went out and did my normal weekend errands as normal people do and proceeded to cook a kick ass dinner for my husband and kids. And no it does not hurt to kiss my own ass like that…ha-ha. Sorry if this seems so depressing and lacks my normal self abusive humor but I am being very serious. I go for my MRI’s Monday morning bright and early. I also need to see three other doctors and have a few more tests done to see what is going on inside my body beside MS. Apparently God has gotten bored and thought it was time to mess with someone so he’s back to me. Not that I am blaming God or anything, we’re buds so he likes pulling pranks on me and making me stronger by giving me more then I would like to handle. I will deal though, I have no choice I’m only 32 and I have two beautiful boys to raise.

                I will always say I live for my kids and they are what keep me fighting every day. Screw you MS and any other shitty health problems that want to join the party!

More testS

              Ok it may seem like every time I write and share with everyone I am complaining…well you’re right. It’s not fun to write when everything is going well so deal with it. Ha-ha. So as the world turns I share with you the days of my painful life. I am slowly discovering that I am slowly developing a few new issues along with the old ones returning. I am so off balance that I would be locked up for failing a drunk driving test and lying to an officer about it. My hands are beyond numb and my arms and legs are beyond weak.  I took a shower tonight and had to hold the wall the whole time cause I could barely stand. With this my lovely husband decides to crack a joke and tell me he’s buying me a shower chair for mother’s day. Ain’t I so lucky?

                Sooooo I had taken this week off of work and so far every day I have had a doctor’s appointment. With each appointment I have been told I need to see another doctor and go for more tests. More MRI’s for me YAY! I know you are all jealous but no you can’t be me for a day. I also was told that my four month rash is not an issue with my meds or an allergic reaction. I was tested and found that I am allergic to copper sulfate but still no answer as to why I am so friggin itchy. So onto the gastro cause I might have liver issues causing this rash…fun. I was also scolded by my neurologist for smoking which is a recent development. They say try to stay stress free so I smoke to help the stress. Needless to say today I hopefully smoked my last cigarette. And so in conclusion, I still am not fully functional and have a plethora of tests and appointments to make and take. I will keep you all posted till then wait with anticipation and love.

My Self rejection

                So I have been saying that I have been feeling better…good even. I have been working full time and being “Superwoman”, yada yada yada. Well I knew it was only a matter of time before it all stopped.  Now I can lie and say that I am working through all of the recent issues but for those of you who know me best know that I am not. I have started calling out of work again. Why you might ask? I have the sick time why not use it. Haha joke.

                Ok here’s the rundown. I have had this horrible itchy rash all over my body since January; the itching alone can make you crazy. That’s not all folks. My bff fatigue has returned in the worst way along with her friends joint, bone, and muscle pain as well as their chaperone skin burning. I am also having a really hard time with…um….um….um, oh yea remembering! The hands are a new old friend that is trying to make a comeback; I am slowly starting to see my handwriting get bad again as well as having trouble typing.  My trusty sidekick piump cane makes an appearance twice a week or more too. Yes I am a bowl of sunshine. On a good note my lap band is finally out and I am able to eat without pain once again. Thank you thank you please hold the applause.

                I am convinced my body is trying to reject itself. I don’t blame it; I would to with all this shit wrong. So back to the incessant itching. I have been to three doctors and have been given four different creams and had a skin biopsy done. The creams haven’t helped and the biopsy shows some sort of allergic reaction. Reaction to what; I have no friggen clue. I have been eating the same food, using the same detergent and soaps for the last year (I know I’m boring) and haven’t started any new medications so I don’t know what I am reacting to. Now I am on a first name basis and weekly visits with the dermatologist.  My whole body is scared from this rash; I just want the itching to stop.

                Two weeks on to the neurologist for my tri-yearly visit to try to figure this conundrum out as well. I am sure I will be walking out of there with my appointment for the two hour MRI I so look forward to. My only fear, besides walking, is that my doctors will take me off all my meds to find the culprit. I am afraid I will be so much worse off than I am now and that’s not great right now.  Oh well, until next time I will keep you all on pins and needles till I solve this problem. Kisses

I aM Superwoman

                It’s been a while and I know everyone has missed me. I have had a horrible case of writers block. Probably a symptom of the MS since it seems EVERYTHING else is. Anyway quick catch up. I had a good holiday season, was able to cut my own food this year which is always a good thing. The last few months have been good for me MS wise, I have felt the best I have since I was diagnosed in 2009. I started working full time days, no weekends and not getting home close to midnight helps. I was under an immense amount of stress the last six months or so and its funny how that was the best I felt given the fact that stress makes symptoms worse. Buzz kill…now that my stresses are dwindling down to normal everyday stuff I am starting to feel like crap again.

                I keep everyone posted on my current conditions because a lot of people are curious about MS. It definitely affects everyone who has it very differently. Lately it is affecting me mentally; I had a mini nervous breakdown the other night. I am very anxious lately and my thinking is very foggy. I literally forget what I am doing in the middle of doing it. I find myself getting confused very easily and staring off into space. I am starting to lose balance again and my legs have those pesky 50 lb weights on them again. We have something new...a constant it all over my body! This alone can make you go crazy. I have scratches and bruises all over from the constant scratching. I look lovely. This by far is the worst symptom I have experienced.

                I have to say I have a huge support system with my family and friends and for that I thank you all. Although people seem to think I am so “strong” I am not Superwoman.  I need a lot of help sometimes even though I don’t like to admit or ask for it. I do as much as I can myself till I hit the point of exhaustion. Today I had to do normal grown up things like clean the house and laundry all while being sick and having the physical MS issues that have reappeared. I cleaned out closets, vacuumed the house, cleaned the bathroom, and rearranged some things and laundry. So maybe everyone is right…I AM SUPERWOMAN.  Hahaha just kidding. So this is where I am at now. Symptoms starting up again, new ones appearing and still dealing with everyday life like everyone else just with a few extras added in. I can honestly do without the extras though.