As a child I was told that when it rained, it meant that God was crying. And his tears would wash away all of our pain and troubles. And still today, so many times when I pray, I pray for rain.
I also pray for a cure. I ask God to “fix” me. The sad part is I don’t pray for anyone else. Just myself. I know it sounds selfish but that’s what I do. I have become so consumed with getting better that the disease has made me selfish. Sometimes I neglect everyone around me, including the one’s I love the most, and that makes me sad.
My pursuit of normalcy also seems to have me waiting for someone to rescue me. Waiting patiently for Big Pharma to find a cure. Hanging on to broken promises of healing remedies and simple fixes. I hear them all the time. They’re all over the Internet and they come in my emails. These pills will repair your damaged myelin. You need to change your diet. Unblock your veins. Get more sun.
What’s a girl to do?
Who do I believe?
It all seems like a crapshoot and only the lucky survive.
Well, I want to be one of those lucky survivors. I love life no matter how hard it can be. I may complain and feel sad sometimes but that doesn’t mean I want to stop living.
But I must admit that I’m scared everyday. I wake up scared. I go to sleep scared. Everything just seems to be getting more difficult. Sometimes I wonder if this pain will ever let me go. I know I still have a life to live so I must carry on. And no matter how hard it gets on the surface, deep down I always know that I don’t want to give up. I just can’t give up. I can’t give up because I know I am being watched. I know I serve a special purpose.
And every time it rains, I look for that purpose.
Nicole, you are such a sweet girl. I have had MS over 30 years. The first 20 were a piece of cake. I used to think it was a great disease to have because it would go into remission and I would feel normal for awhile. I never even identified with others with MS. Now, being in SPMS, I find myself pointing out my MS to others. I don’t want them to think I am lazy or drunk…or stupid. I am also more optimistic than ever since I have had some improvement in tha last couple of years. I am also more frustrated because it has taken longer than I thought (or should I say, hoped) to get even better. I have been communicating with Dr. Broeska of Regenetek. He is doing stem cell work in coordination with CCSVI and is having good results with his first 60 patients. I am going to be watching them very closely and will let you know more info as I learn about it. I say prayers, too, for myself and the others I know with this disease. I can remember when I used to be smart…and I want to be able to keep up with you….a real inspiration for all of us. Linda
Nicole…I want to invite you to go to my church with me. I will come and pick you up and I feel very spoken to by God right now. Please come because God is telling me that you will find what you need right now. I felt compelled to reach out to you. The next Sunday you can go I am at your home. Celebration Church in Metarie. The people and Holy Spirit I have found there has changed my life and health. I love you. Happy Thanksgiving and you are going to come with me..,,10:45 service !!
Andrea, Call me so we can set it up!
Nicole….As I know you understand how our shared disease…MS hit me hard from Saturday until this morning. I just slept and slept. Got up to eat, pee, see my kids and went back to sleep. So I am just emerging and thought of you immediately. Please call me today when you are awake and able so we can make a church plan. The Holy Spirit reached out to me so loudly the other night when I was reading your post. Wow. So God brings us together and you are introduced to the most awesome, comfortable, friendly life altering churches called Celebration!! Please forgive me for this past weekend and feel very certain that I will be there as soon as we can schedule a church date! Know I love you and you inspire me every day!
Hugs,
Andrea
Hey Nicole,
Man you’re like the “reality non TV” for MSers, you keep it real. I can’t imagine fighting this long and giving up either, today. However some days are harder than others. All I can say is thank goodness I’ll be getting a new body someday! The biggest problem I have is giving up is the easy way out so I’m with you, keep on keeping on!
Your friend,
Tim
Tim I will!
Growing up I also heard the same about the rain. You shouldn’t feel selfish! We with MS have felt that way at one time or another. I too get tired at times of all the hype and supposed research when will there be a cure? Still I try to stay positive (not always easy) Thank you for saying and expressing what may not be easy for most of us.. I am rooting for you. Take care
Pam, Thanks!
Thank you.
Timothy, No problem.
I am no longer sure I would recognize the me without MS. Would I still sleep so little? Would I still be able to understand the pain with which others live or would their lives seem sadder?
I have become so jaded towards “the next big cure” because I am less and less a believer in the questions we are asking with regards to MS research. I feel like we are playing battleship with our research to help us as we play against the MonSter. The problem is we aren’t guessing in a pattern designed to win. We are going A1, A2, A3…while the MonSter is taking random spray of shots at us.
So I make myself more content to take what is available and not play the game of looking for the destroyer slowly sinking parts of my life. Instead, I say let’s break out the flying ships and head off to another board game…may be “Life” would be fun. I will grant you I say this while my MS has been relatively stable for the past few years, but if you were going to dream wouldn’t you rather dream a different game all together?
well lived, I love that frame of mind!
Nicole, I want to thank you for “serving your purpose.” I have looked to your blog so often since I began suspecting MS in my life. I feel very comfortable saying that you inspire and comfort us all! I know MS tends to turn us all a bit selfish and angry at times, but as long as we keep fighting the fight, let’s not be so hard on ourselves. I’ve opened my eyes to this behavior recently, noticed I was not behaving like the Mother I know I am. That hurts! But the good news is that I believe that these valleys we MSrs travel through serve their purpose, in some sort of twisted way, they must. Keep throwing out those dice and hoping for that sweet 7 or 11! The odds are definitely in our favor that one of these days WE WILL roll the right combination! 😉
Monica, I like the way you think!
Nicole, I’ve experienced all of these emotions, too. I’ve just about given up the hope that someday things will happen, and I’ll be my old self again. I think that makes us, well, normal! Hang in there — I’ll add my prayers to yours!
Muff, it’s so refreshing to read that I am “normal”
Understand completely. Please check-out this video. This organization (Can Do MS) goal is to gives us the tools to live a better life with MS.
http://www.mscando.org/can-do-ms-community/video
April, I have and its great!
You do serve a special purpose, you show those of us to be unlucky enough to have our lives blighted with this condition that whatever MS throws at us life goes on and we can all adapt to our ‘New Normals’
You’re an inspiration, please don’t ever forget that
Elaine, Thanks so much!!!!
I totally agree with Elaine’s comment! Nicole, you are such an inspiration. As I sit here and think about how I feel, I recognize that it can be so much worse. Your comments motivate me to be grateful and make the most of every moment that I can walk. You serve a purpose and are truly a blessing and we are all here to wipe away your tears when you need it.
Cynthia, Thanks so much.
WOW!!!! That made me cry….you have such a gift. I could read your articles all day, everyday. Thankful that I found your blog. Happy Thanksgiving!!!
mary alice, I’m glad you found me too!
Nicole. You are perfect just as you are, there is no need to “fix” you. After I read your post, I read an email from another blog site and I share it with you in the hopes that it encourages you.
“Your ability to see yourself as a Divine embodiment shifts everything at the deepest level. It expands your vibration exponentially. And how you vibrate is what the Uni-verse echoes back to you in every moment…Recognize that each time you catch your reflection you are looking at the Divine…When you source your reality from these truths, your entire reality shifts. You begin to naturally choose the highest outcomes for yourself. From what you eat, to what you watch, to the company that you keep. This greater perception of Divinity leads you into the lives of individuals who can support you. Solutions will begin to arise from the unlikeliest of places. Everything from health tips to life strategies will come into your awareness. Events will surface. Groups who are interested in living their greatest lives will reach out to you.
Most important of all, you will begin to love who you see in the mirror [regardless of what it looks like]. The false perception of victimhood will fall away and the victorious nature of life and living will become your new way of operating in the world.”
A long post, but I hope it encourages you and reminds you how amazing you really are!
Linda, Thanks for reminding me, I appreciate it.
Thank you Nicole! This again puts in to words my feelings and thoughts. I pray to be fixed too. I think we all do. Try to remember others, that has definitely been a struggle for me. I find that MS has made me a selfish person. I am also a much more jealous person. Why do others walk with no trouble but it takes so much for me? I definitely struggle with it, but reading your posts is one of my highlights every week. I am always amazed at how well you are able to describe this crazyness. Sometimes I feel like you are taking my thoughts and putting them into words. Hang in there! You’ve certainly inspired me and continue to every week!
Laurie, I tend to forget there are many worse off than me. Then, for those who aren’t I’m a bit jealous too! Sad, but its the truth
Nichole,
I am so glad that I have found you. We share so many things in common that it is soothing reading your posts. Soothing not because the MS is rearing it’s ugly head, or because you are having a difficult time with it, but because I feel a small bit better knowing that there is someone else in this world who experiences some of the same things that I encounter on any given day. It is true that someone is always watching, but it is also true that you are never alone. There is a good ole’ country girl from Kentucky who waits patiently for each of your posts and who walks that good walk of faith with you every day.
Much love and many blessings, sweetheart<3
MS DIAGNOSIS 2005…ongoing.
MS SURVIVOR by the grace of God.
Cassondra. Thanks so much. No one wants to feel alone.
Nicole, I am a caregiver for my wife who has MS. She was diagnostic in 1985. It hit her hard for the first 2-3 years and then backed off. It has effected her slower sense then and now she can not even stand up. I use a patient care lift to pick her up out of the bed and put her in the chair, bath, or where ever. One of the hardest things that I have had to do is keep her in a a POSITIVE attitude about life. Depression is bad with MS as you well know. I have been on MS websites and listened to the various comments that people with MS make. Weather you live a few years or a lot of years, I think the most important thing that you as a person can do is remember that ” As long as you enjoy the life you have with your family and friends, that is all that counts. Dispite the acks and pains. MS sucks, not only for you but also for your family and or friends. But that is life and we all have to deal with it. I hope this message helps you live with your MS. Make the best of it for yourself and your family and friends. Mike Hopkins.
Michael, I needed that on so many levels. I wish you the absolute best, Thanks
Nicole, your writing inspires me – we are having such same thoughts many times in our closed group somebody living with MS posts something and then your blog entry reflects much of the same emotions and feelings. I love your writing and I am thinking of you in your continual quest to rise from the MS a healthy woman – God Bless You xx
Non Smit, Thanks for the kind words.
Once again you have put into words what I feel every day of my life. I keep on keeping on for my kids, and my service dog who I love like one of my kids. I wonder if, when they are grown and gone, I’ll be ready to give up this crazy struggle.
Oh Laurie – it breaks my heart to read this. I hope you keep fighting much after your kids move out. I know the fight is hard – trust me I often don’t feel like doing it anymore, but I can’t imagine not fighting.I have many times thought about not doing the many things I do to try and stay where I am, but I can’t imagine how angry at myself I’d be after fighting so hard for years only to give up. Keep up your fight! Your husband is there and I can only imagine you’d get another service dog if the time came for it. It is definitely a crazy struggle though, but I can’t imagine it any other way now. I wouldn’t have become facebook friends with you if not for it! I have met many people through it that I am so thankful for!
Laurie, I don’t think that will be any time soon!