Well, Hurricane Sandy hit my family more than I was anticipating. During Monday night, October 29, 2012, everything was going fine. I foolishly thought to myself that this was overblown out of proportion as usual. Until I heard a snap. Then a loud second snap. A huge tree fell down across our yard stopped only by our patio roof. It took out our electric line. After fighting the cold and the darkness in the house until about Wednesday, the kids and I decided to take refuge in my parents house until our electric came back on.
During that time I had another MS flare up. This is the fifth one this year. Again, I was started on the steroids just when I was feeling back to normal and beginning a healthy lifestyle. I was in tears. I couldn't believe how much bad luck I was having. Between the power going out and another flare up it was too much to take in. I honestly don't know how much more I can handle. I am strong but even for me it gets to be overwhelming. I have one more day of the steroid IV's then onto the pill. I am going to wean off faster than usual with the pill because I just can't take these steroids anymore. I am grateful they help but I need to find other ways. Going to try to eat healthier, talk to my MS doc about some herbal supplements, and begin my exercise again. Also, I see him in two weeks so I am sure I am going to be switching meds again. I apologize for the lapse of time in communication fellow readers. With all that was going on, I hope you understand. Now it's time to bolt down for the Nor'Easter that is hitting us today. Sometimes I think to myself that this really might be the end of the world. Ha Ha
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I felt complelled and an overwhelming sense of duty to write about the book "We All Fall Down: The True Story of the 9/11 Surfer." I met Autumn Conley by chance on LinkedIn. She is the editor of this book. It was by her husband Joseph Bittick and 9/11 survivor Pasquale and Louise Buzzelli. I am extremely grateful Autumn and I had a chance to connect because of this inspiration book that is now ready for sale. It was featured on the today show and that is when shortly afterwards I became in contact with Autumn.
As she has put it, it's truely a story of a miracle. Pasquale has finally found the courage to come forward with his sotry after several years. I can only image it took that long because of the emotional inpact it has left on him and his family. Such a trumatic incident isn't one that is easily overcome nor it may never be. Hopefully sharing his story has been theraputic to him. It has gained much media attention. Paquale was a structural engineer with the Port Authoriy of New York and New Jersey. He was in his office on the 64th floor of the North Tower as the September 11th attacks began. As he spoke to his pregnant wife on the phone , the South Tower fell, and he had the sense that his own building was about to do the same. Pasquale crouched down and huddledi nto a corner of the stairwell as the 110-story building came crashing down around him. He survied the tower collapse and woke up in the open air hours later on a stack of debris seven some seven stories high. His story became an urban legen that gave rise to much speculation. He this book he tells of the collapes of the North Tower, his road to recovery, and his life with his family and friends 11 years later. It is stated that a portion of the book proceeds go to the New York Firefighters Burn Center. This book is one of great inspiration, courage, strength and the amazing power of the indomitable will. I wanted to share this story with you all and provide a link where you can purchase the book and find out more about Pasquale's story. Even though my own person battle with MS doesn't compare to the horrificness of this endeavor, in a way it does share some common threads. It shares the awesome strenth of a person's willingness to survice and fight. It shares hope and courage. It shares the physcial and emotional battles that we deal with on a daily basis when left with a tragedy in our lives. I hope you can take a moment to check out the link and consider buying this extraordinary book accounting Pasquale's journey. www.911surfer.com Answer this question! How many doctors do you know that actually call YOU because he is worried about you and wants to take a more proactive approach? In my experience my answer would be ZERO. Except for the one doctor I have now who is my MS Specialist. He actually called me to come in because he was concerned with my numerous flare ups this year and doesn't want to wait around to just see what happens. He wants a more proactive approach and desires me to be flare free for years at a time. I have to admit though when he did call me I became extremely nervous. Doctors only call when something is wrong. I know having this many flare ups is not good but still having him call me made me think it was going to be drastically serious. But I am grateful for finding this wonderful doctor who has dedicated his whole life just to treating people with MS and his MS research institute. I am grateful he is so caring and proactive because that is so rare in today's world.
I have to get another MRI to see where I stand. Also, some blood work to test for this certain virus in case he wants to switch my meds. He is thinking about switching my daily shots to this once a month infusion medication. I admit not having to take daily shots would be a blessing but the possible side effects of this infusion is down right scary. I don't know if I want to do it because of that. He told me not to get ahead of ourselves yet. That we will see once the MRI comes back. So naturally I am worried about that. I don't like taking daily shots but it's alot better than risking those potential side effects. So now I am hoping the MRI shows some improvement. I trust him. He is one of the leading doctors in the MS field. It's just all scary and overwhelming. Thankfully I am beginning to feel better once again since the recent flare up. Slowly getting back to my normal self. Just got to hope for the best now. I would love to hear any feedback on any doctors you may have that are actually caring such as mine. Like I said it's a rare find now-a-days. So here I am getting over yet another flare up this year. I believe this makes four thus far. It's quite discouraging and depressing to say the least. I know everyone keeps telling me to hang in there but quite honestly I am so sick of hanging in there. I hear of people that go years without a flare up and I have had so many in this year alone. Thankfully, the damage hasn't taken my only good eye left and I am still functioning normally. But in that same respect also, I am tired of being thankful for things when so much has been taken from me. MS has taken my sight in my right eye, has caused pain in my legs, repeated attacks of vomitting, and I can never be sure if I will be able to hold a steady job again. It's taken my sense of security, my hopes of the future, and my general sense of well being. It has mostly taken away my sense of normalcy. Everytime I hope this is the last flare up I have to deal with for a while along comes another.
It's so hard sometimes to get myself out of this way of thinking when everything just seems so bleak all the time. I do my best with it though for my kids and husband. I'm just so tired of fighting. I completely understand now that when people are so ill they just give up. It's not because they are weak or depressed really, it's just the constant fighting wears you down. There is really only so much one person can take. I don't understand why I had to get MS. Why me? Why not some horrible person who does horrible things? Why do good people get dealt such crappy hands? I know I am whining a lot. I guess I just need to vent. And I suppose whining about it isn't going to help or make it better. At this point I don't know what will make it better. Just trying my best and doing the best with what I have. That's all I really can do...that's all really anyone can do. I was just wondering to myself the other day how differently people deal with life's challenges. There are so many challenges that can affect a person. This could be financially, emotionally, health complications, trouble in the work force or in a personal relationship, and the list could go on. This brought some of the focus on myself and how I deal when life throws you a curve ball. I like to meet challenges head on. I am not a procrastinator. I address the issue and try to resolve it so it can be done and over with. But as you all may well know, not all problems can be resolved so quickly. In fact, many challenges linger for years without a resolution. My main issue is having MS. This isn't a problem I can solve. I take the meds and follow the doctor's advice but sadly MS has no cure. Unfortunately, this will be a challenge for the rest of my life. So this seriously conflicts with my mentality. It's a constant day in and day out battle. There are good days and there are bad days. All I want is for there to be just MS free days. I am still trying to grasp this grim reality. Most of the time distration works well for me. Thankfully, having kids provides a great deal of distraction. But there are days I dwell on my MS. There are days when I am angry, fearful, and just down right sad about it. I try not to dwell on it. I can only do what I can do and the rest I really have no control over. Just that fact alone scares me. Just seeing it here in black and white gives me knots in my stomach. I try to focus on the positive as much as I can. I try to enjoy the little pleasures in life and savor them. I try to remain hopeful.
I often see how others deal with their complications. Some just sink into a deep, dark hole of depression. Others ignore it altogether. A few act out negatively without even acknowledging the underlying cause. A handful create different problems to avoid the real one. Then there are a small number who change their negative into a positive. It's interesting to find out also what different people think are real challenges. I listen to a few of them complain about the most trivial things. They make a mountain out of an ant hill. And I wonder why? Is it because we, as human beings, almost need a problem in our lives? If everything is going well, does it scare us? Or does it just bore us? Maybe it's possible that it gives us a purpose. These are questions I can't answer. Maybe you can enlighten me?! How do you deal with problems in your life? What do you do to try to make the situation better? |
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