MS update

     So I don't know if you've heard but I have this little thing called Multiple Sclerosis.  I also don't think many of you know that I knew I had it before I was officially diagnosed as well as knowing I would rapidly decline. I get a lot of feelings and premonitions that I usually don't share with people mainly because you would probably think I'm nuts! Ask those close to me and believe that I am usually rite on the money. That being said this blog might depress and/or upset a few of you but it needs to bet said.
     I had told my husband when I was diagnosed at 30 that I know I will be in a wheelchair by my 40s. Morbid? No, realistic. I am now 35 and using a walker 98% of the time and when I don't I'm leaning on someone or something to keep me up. I get all these recommendations from people with MS, people who know people with MS, people who know nothing about the disease and a handful doctors. I try everything I hear about. Anything that I think would help.
     I feel beyond help now. I have so many issues that are now being attributed to the MS. I have been noticing little things here and there like bladder and bowel muscle control. I've seen 3 different doctors this week of 3 different specialties and heard from 2 that my issues are due to my MS. I never gave any thought to the muscles that I involuntarily use everyday all day like my entire digestive system. My muscles are so week that my intestines are not able to move food through, my stomach takes forever to digest and I choke on acid as soon as I lay down. Without going into anymore detail lets just say I feel like an infant in more ways than one.
     Que more meds and tests. I layout more money for co-pays than groceries it seems. I am beyond words and way beyond frustrated! Every day I wake up and try my hardest to do normal everyday things but I also wake up and notice how many things are slowly declining. I know there are people who think I am exaggerating, overreacting, a hypochondriac. To these people, I feel sorry for how ignorant and selfish you are. I also know there are a lot of people who are sick of hearing me "complain" when you ask how I am feeling...to you I say go scratch! If you don't want to hear it don't ask because I don't feel good, I haven't felt good in a long time, and I don't see a light at the end of this tunnel yet so deal with it. To the handful of supporters thank you.
     I don't wish this disease on my worst enemy. No one can know what I go through on a daily basis unless you walk in my shoes. Imagine things falling out of your hand for no reason, having to hold a cup with two hands like a baby, needing constant support to stand and walk, fear of a staircase, needing to run to the bathroom when you can barely walk, and trying to make everyone around you believe you need no help at all. It's exhausting! So while everyone is asking for designer bags, jewelry, and electronics for Christmas I am begging Santa for relief and a fucking cure already! I also realize thanksgiving is in a week so with that I will say I am thankful for the fact that I still wake up every morning, I have two beautiful and healthy boys and a loving and supportive family behind me.

Just soMe thoughtS

     Be greatful you're alive. You're lucky you have your kids/family. There's always someone worse off than you. God only gives you what you can handle.  How are you feeling? Isn't thee any medication or anything they can do to help? All things I hear on a daily basis from old friends, new friends, strangers and family. This is what I have to say so hold on to your hats folks.
     I am extremely greatful I am alive. I am not greatful for the quality of life I am living. I am beyond lucky to have the unconditional love of my boys and help and support of my family. I do not feel lucky that my 7 year old feels he has to hold my hand whenever I walk so I don't fall. Yes there's always someone worse off than me but slowly losing the ability to be independent, always sleeping, barely being able to walk on my own is MY worse right now and I'd say it's pretty bad by any standards. I think God has overestimated my strength. I feel like shit, stop asking it's annoying. I am on a ton of medication to try and help, obviously they aren't doing much. And while we're at it I understand Tom, Dick, and let's not forget Harry have MS also and seem fine but every single case is different if they've tried it chances are I have too and it didn't work.
     Now that that's out of the way lets go into some detail. I've been on Gilenya for a few months now and no symptom improvements, in fact things are slowly getting worse. Memory sucks, left hand mostly useless, right hand getting there, afraid to walk without a walker, wall or person to hold onto. I feel like Bambi taking his first steps when I walk. I sleep a good 15 hours a day and need more. Depression is not even the word to describe the lack of emotion and lonely/empty feel in inside of me all the time. Dr. Howard did not decide to do a brain scan which is fine cause I can wait to be inside that machine again. Everyone tells me about this and that to do and try, I do try it all to no avail. I appreciate everyone's asking about my health but it upsets me cause I have nothing new or good to say when asked. I beg please stop asking everyday, please stop with the unsolicited advice, and pretty please stop com pairing me with your aunts, neighbors, groomers brother.
     I sound harsh and that's because this does not come from a happy place. I had an emotional year and that too takes a huge toll on my health. I keep it all in so no one else has something nasty or negative to say about it but I have problems besides the MS too people. Thank you for telling me how great I look and that I don't look sick. That clearly says to me "you are lying, you look fine." I'm not and I don't wish this on anyone. My heart breaks for those dealing with cancer, I've seen it first hand with too many family members. I've also seen some of them and other sin remission. Just cause I don't look sick does not mean my body is not screaming from the inside.

     With this all said I leave you with this. Don't take the little things for granted like not having to schedule a sitter to be there while you shower in case you fall. Be thankful you can run and play ball with your kids. Be glad that you can hold a pen and write like an adult not a kindergartener. And please enjoy the fact that you can walk free and run. Please run and jump for me. My hope is for a cure so one day I can do these things myself again. This blog has been brought to you by my nonstop mind.                        

Second shot Medication

        Hello friends. I know it's been about 5 months since you've heard from me last, but like I stated in my last post no sense in complaining about the same thing over and over. So since then I have taken a few gravity checks; one of them pretty major. I fell in the shower and hit my beautiful face on the faucet and cut just under my lip. Along with the cut came a bruised jaw, collar bone, ribs shoulder arm and abdomen. Nothing broken thank God except my spirit a little. A small scar under my lip is all that remains and my vanity makes me the only one bothered by it. Oh well. We have discovered new cervical lessons as well. On the up side I have finally started back on medication, Gilenya.

     I started it with high hopes of having some slight repair of my new friends in my neck, so far zilch. I did however start feeling a little better. My spirits were high, I was out and about more. It could be the meds, summer, or mind over matter. Either way it was good. Que the ampyra. A symptom specific drug that I tried with Copaxone 3 years ago and had no luck with. Guess what? No luck this time either. I have been getting migraines, worsening numbness in the left hand after it was subsiding and now in the right hand too. Monday it hit me like a ton of bricks, this all started around the time I started taking the ampyra. Let's look up the side effects shall we? Side effects may include: headaches check, numbness check, balance issues check. Those were the first three listed and the three major issues I have so I stopped it. No point in taking another pill if it's not helping so goodbye to Ampyra I say. I also said good bye to quite a few loved ones as well.

     "Poppy" Joe my Aunts father passed in March after living a long wonderful life and going through a hard struggle to remember it at the end. A man I would consider my own grandfather with the fondest of memories. I also mourned my Godfather's mother Rose passing also after living a long loving life. She was a connection to my grandmother that I never got to know with all her stories. The world lost a terrific actor/comedian and one of my favorite funny men with the tragic death of Robin Williams. But by far the one loss that I am taking the hardest and still trying to cope with is the death of my best friend...Sean. It was a 14 year friendship of ups and downs, goods and bads, ins and outs but we always remained close, like his mother would call us Bert and Ernie. A life taken too young with no answers. I loved and will miss every one of them. 

     In having to deal with all this death, it makes you question your own mortality especially being sick. So far everything I have "predicted" about my MS has been on point whether my family and friends like it or not. I know my body and live with this everyday. I can diagnose myself better than  y buddy Dr. Howard most times. Why? He doesn't have MS either so he only knows what research tells him. I know that I am completely dependent on my walker now, I also know I have extremely limited use of my left hand and it hates to hold things, I know my right hand is jealous and wants in on the fun, I  know that I am a horrible insomniac, I also know that my memory has gotten very bad and the Dr. Should have done a brain scan when we did the cervical. Bet you he tells me this month he thinks I should have one. That's when I hold back from slapping him. So I hope you have enjoyed our little chat. I would say goodnight but it's only 3:25 A.M. and I am not tired yet. So see ya!

My feelingS

                My blogs have become far and few between the last year. I feel like it is pointless to write the same things over and over. I was diagnosed in October of 2009 and I have had little to no relief since then. The last year I have also progressed quicker then I would like. In January I had this whole new “attitude” towards life. That whole new year new you mumbo jumbo. Well that deflated quicker than a whoopee cushion under an elephant. I try to keep upbeat and positive as much as I can but it gets hard to do on a daily basis.

                My family both immediate and extended have had their own problems and losses to deal with lately so I rather keep how I feel inside and let them vent. I’m not gonna lie, it’s hard. So I am venting now. I have been suffering badly for a few months now and the last three weeks have been the worst ever. This fight gets harder and harder by the day and I am already tired of fighting. I can no longer walk unassisted, and I have now become a human pin ball bouncing off the walls as I walk due to lack of balance. I fell out of bed and bruised my ribs, back, arm and leg. Standing for more than a few seconds does not exist either and I am on my way to needing a sippy cup with handles to hold on to my drinks. In short I am beyond weak physically; mentally I am slowly getting there. Depression sets in like an old friend so easily.

                I will leave it at this cause at this point I can write a novel on what is going on in my body. As I always say I am not writing for sympathy I am writing to inform. I may seem very strong and self confident on the outside but the looks and stares make me beyond self conscious. For those of you that think I am a hypochondriac, lazy, depressing, or a Debbie Downer I do not apologize. I am none of these things I am sick so educate before forming your opinions. I do not fake or exaggerate a damn thing about my MS. Trust me I work hard to underplay a lot. I am secondary progressive if you would like to read up on it. Please stop with the unsolicited advice and telling me how good I look. I look as shitty as I fell I am well aware of that, I don’t sugar coat it so neither should you.

                I leave you all with these words, make of them what you will. There is only so far my humor can take me when MS is concerned. I am tired people so if my complaining or attitude bothers you then there is no reason for you to be reading this nor are you needed in my life. Like I said my family has been through their own trials and tribulations lately but through all of it they are still here for me as I am always there for them.

A Mother's Strength

               Everyone tells me how strong and brave they think I am for dealing with my disease as well as I do. How do you do it? I have no choice I have kids to take care of. Like I said before, I am very good at hiding the pain and feelings. I have to say though I didn’t become strong from the MS, I was taught how to be strong from the best teacher on earth…my mother.

                I grew up as any normal child with three siblings and two parents. My father worked and my mother stayed home and took care of us, the house, the cooking, shopping, etc. Like any normal mother. She then went to work and still was able to do it all. Later in life my mother had her struggles a heart attack, triple bypass, breast cancer, 2 stents after bypass, diabetic. Through it all and after recovery she stayed strong and went back to her everyday affairs not letting us see how she really feels. She had no choice, she had children to raise. I am older now and now I see her weakness and worries cause being a mother I have to hide it like she did so I see through her now.

                My mother and every mother I know draws strength from what makes them a mother…our children. The love one feels for their children is beyond words, especially in my case. My Dr. tells me time and time again how he is surprised it took this long for me to get to the point I’m at now. It is solely because of my boys. My strength comes from them. I have to take care of them I have no choice. If I had no children I wouldn’t fight like I do. So when you tell me how strong I am I thank you but most of all I thank my mother for teaching me. I love you Mom xoxoxo.

My friendS II

                I would like to start off by wishing everyone a very late happy holidays and happy new year. The holidays were nice and quiet this year even though the entire family was sick. We made the best of it though, as long as my kids were happy that’s all that matters to me. As far as my MS the walker seems to be a permanent thing as well as the right leg weakness, limited foot movement and numb fingertips. All things that I have come to terms with. I am now home on permanent disability which relieves some stress, not having to worry about work.

                So as New Years approached everyone were posting their stories of 2013, what they were and are thankful for, and of course their resolutions for 2014 on Face book. I didn’t put anything up solely the rest of the world was. All the out with the old and in with the new and new year new you crap was all very eye rolling. Well I had a mini aha moment this week. It is all true. Plus if you feel positive and put that out into the universe you do receive it back.

                Here are my “resolutions and reflections” for the New Year. I am so forever grateful for my loving, supportive and helpful family who are there when I need them. I am also grateful for the new friends I have made this year through school. A truly genuine group of women who offer help and have been there when I need them. From strangers to beyond friends. They are there to help my kids in school when I can’t make it for an event. They are there to bring my kids home when I am unable to. They are there to help my mother and son walk on ice. They are especially there to make me laugh which always makes me feel great. It takes a special kind of person to befriend a cripple nutcase like me and become so fabulous and there for me when I do swallow my pride and ask for help. It also makes me happy that our children are all close friends with each other in their classes.

                Dealing with MS is hard on your own but when kids are involved it’s even harder. It warms my heart that besides my wonderful family I am able to depend on these handful of fabulous Great Kills moms. I truly appreciate everything you all have done for me, even the littlest things and hope that this year is the beginning of many to come. Out with the old and in with the new!