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Hi, for those of you who don't know me; my name is Lara Bakos. I am a wife to my awesome husband, Scott, and a mother to two exceptional children, Andrew, & Brittany. I apologize in advance for my lengthy story, but I want to help everyone understand my situation as best as I can. I have PPMS (Primary Progressive Multiple Sclerosis). It is an autoimmune disease for which there is no cure, and while other types of MS have treatments to help slow their progression, PPMS does not. So as time goes on, I continue to worsen.
I was diagnosed in 2010, and it has been a fight all of the way. Even before I was diagnosed I was having symptoms. But no one could figure it out back then. Through the years my symptoms have worsened, and many new ones have come about as well. My pain has intensified dramatically since it all started. I take prescriptions, but they only work so well. I would be even worse without them though. God has been key in helping in all of what I've gone through, and am going through now. I can honestly say, I would be dead by now if I didn't rely on Him. I started having trouble walking many years ago, but I never gave up the worse the pain got, and the harder it was getting to walk. A few months ago I was to the point all I could do was stand for 10 - 20 seconds here and there. Now, I can't stand at all. I lost the ability to walk at all about 3 years ago. It has been hard accepting that, but God gives me strength and tolerance everyday to keep me going. One of the pains I have is an intense burning/stinging pain on the whole left side of my body, from my face clear down to my toes. It hurts very badly. To help me deal with it I try to focus on the good things, and distract myself from it. But as it intensifies, it gets harder to tolerate. As I mentioned though, God somehow gives me tolerance. He Truly Is Amazing! I know this is hard for my loved ones to see me go through, but I know God is helping them, too. I am in need of a few things that we just can't afford. We have lived paycheck to paycheck for years, since Scott is the only one working. Our insurance doesn't cover any of it, and I don't qualify for disability benefits because I didn't work enough in the years prior to being diagnosed. That's what I was told by the Social Security Office, and a couple of lawyers.
I am in need of two wall-mounted lifts. The ones I need are priced at 3,000 - 4,000 a piece, that includes everything needed to install each one. One for the bathroom, and one for the bedroom. I am using a temporary lift in the bathroom that Scott made. He did a great job, but it is definitely not a medical one. We just can't afford a proper one. He bought the lift from a hardware store for $50. It's not the safest thing to use, but it gets me by for now. I am also needing one for the bedroom so I can use the bed once again. For the past 3 months I have been sleeping in a recliner chair. I have not been able to get on the bed by myself since I lost the ability to stand all those months ago. Scott had to lift me onto the bed. He is no longer able to lift on me. He has shoulder pain and problems, as well as hip, and low back. He has been a hard worker all of his life, and it has taken it's toll on him. Unfortunately, not being able to afford having things fixed, and not being able to miss a paycheck, much less several months worth, he has to watch what he does, so as not to make things worse. That's why he can't lift on me anymore. And that is why I have to sleep in the recliner now. It's the only thing I can manage to do by myself, and it's not easy, but doable. I have to slide over onto it. Some times are harder than others. It takes a few minutes to get in it, and out of it. It is always exhausting every time. Eventually I will no longer be able to do it at all. Although I exercise my arms, some of my muscles are getting weaker. Exercise only helps muscles that are not affected by the PPMS. We so wish I could sleep in our bed again. It is Way more comfortable than the recliner. We miss being next to each other, too. I also need to be able to use it again to help my feet and ankles. I have edema in both sides. They are swelled to about 3 - 4 times their normal size. The swelling never goes down. And my blood pressure is A Lot lower now. My family doctor says I really need to get the swelling down, and my blood pressure up. It will lead to worse things if I don't. My recliner footrest doesn't go high enough to help them, and I can't wear compression socks because they make my pain even worse, totally unbearable. Our bed is an adjustable one, so it has all different heights and would help immensely.
I am also in need of a dependable mobility chair. My current chair was given to us and is many years old. It is my backup chair. We had bought a used one on Craigslist prior to that, but it broke down, and would cost more than it was worth to fix. So I have been using the backup. I need one I can rely on. Since I can't walk at all, I am totally dependent on it. When it wears out completely, I am in big trouble. We would like to purchase a new one, that hasn't been used, and has a warranty. The kind I need averages between 5,000 - 6,000.
We are also in need of a handicap accessible van. It is depressing not being able to go anywhere. To get left behind when I really would like to go. Scott used to be able to pick me up out of my chair and put me in the pickup, but as I mentioned, he can no longer lift on me. He traded an old car that we had, that needed work, for an old 1995 van. It has a really old chair lift in it. I can't sit up straight in it because the roof is too low. And it's not comfortable, but better than nothing. The worst part is; we've only gotten to use it a couple of times because it keeps breaking down. The heat in the back doesn't work, and it's leaking fluid from a couple different places now. It is pretty old, so we aren't totally surprised. It was great being able to get out of the house those couple of times. But now I'm stuck inside again. I can't wait for warm weather so I can at least go outside. We don't expect to get a brand new handicap accessible van. They are way too expensive (50,000 - 60,000). We are thinking one that is a few years old, but much newer than a 1995. Scott has seen ones going for around 15,000 that would probably be alright.
We have priced everything, and are trying to raise enough to get the things I have listed.
I thank God for His help everyday. Because everyday is a struggle, and without Him I would be completely helpless. However, the worse I get, the harder everything I do gets. I have so many limitations now, but with God's help I'm fighting to hold on to what I can still do. I truly appreciate any help I can get. I take nothing for granted. I never in a million years thought I would lose the use of my legs, much less become so sensitive to so many things, and have to live like I do with so many different problems. I am hoping that getting the things I need will not only improve my quality of life, but ease the stress this causes Scott. He wants to be able to get the things I need, and not being able to has caused him additional stress. He has always been a good provider, husband, and father. He is everything to me, and he So deserves less stress, and more good. I know there are lots of people in the world who can relate in one way or another. I just hope they are letting God be there for them, too. I'll admit it's hard to keep my chin up sometimes, but God is always here helping me through it all. Even on the days I don't 'feel' like He is, but I 'know' He still is. And I am truly grateful for Him every single day.
I am also So grateful for my many loved ones. To them, and everyone...Thank you So Much for your Support, Help, Love, and Prayers... Everything Helps! Please Share this, & God Bless You All! Thanks!
I was diagnosed in 2010, and it has been a fight all of the way. Even before I was diagnosed I was having symptoms. But no one could figure it out back then. Through the years my symptoms have worsened, and many new ones have come about as well. My pain has intensified dramatically since it all started. I take prescriptions, but they only work so well. I would be even worse without them though. God has been key in helping in all of what I've gone through, and am going through now. I can honestly say, I would be dead by now if I didn't rely on Him. I started having trouble walking many years ago, but I never gave up the worse the pain got, and the harder it was getting to walk. A few months ago I was to the point all I could do was stand for 10 - 20 seconds here and there. Now, I can't stand at all. I lost the ability to walk at all about 3 years ago. It has been hard accepting that, but God gives me strength and tolerance everyday to keep me going. One of the pains I have is an intense burning/stinging pain on the whole left side of my body, from my face clear down to my toes. It hurts very badly. To help me deal with it I try to focus on the good things, and distract myself from it. But as it intensifies, it gets harder to tolerate. As I mentioned though, God somehow gives me tolerance. He Truly Is Amazing! I know this is hard for my loved ones to see me go through, but I know God is helping them, too. I am in need of a few things that we just can't afford. We have lived paycheck to paycheck for years, since Scott is the only one working. Our insurance doesn't cover any of it, and I don't qualify for disability benefits because I didn't work enough in the years prior to being diagnosed. That's what I was told by the Social Security Office, and a couple of lawyers.
I am in need of two wall-mounted lifts. The ones I need are priced at 3,000 - 4,000 a piece, that includes everything needed to install each one. One for the bathroom, and one for the bedroom. I am using a temporary lift in the bathroom that Scott made. He did a great job, but it is definitely not a medical one. We just can't afford a proper one. He bought the lift from a hardware store for $50. It's not the safest thing to use, but it gets me by for now. I am also needing one for the bedroom so I can use the bed once again. For the past 3 months I have been sleeping in a recliner chair. I have not been able to get on the bed by myself since I lost the ability to stand all those months ago. Scott had to lift me onto the bed. He is no longer able to lift on me. He has shoulder pain and problems, as well as hip, and low back. He has been a hard worker all of his life, and it has taken it's toll on him. Unfortunately, not being able to afford having things fixed, and not being able to miss a paycheck, much less several months worth, he has to watch what he does, so as not to make things worse. That's why he can't lift on me anymore. And that is why I have to sleep in the recliner now. It's the only thing I can manage to do by myself, and it's not easy, but doable. I have to slide over onto it. Some times are harder than others. It takes a few minutes to get in it, and out of it. It is always exhausting every time. Eventually I will no longer be able to do it at all. Although I exercise my arms, some of my muscles are getting weaker. Exercise only helps muscles that are not affected by the PPMS. We so wish I could sleep in our bed again. It is Way more comfortable than the recliner. We miss being next to each other, too. I also need to be able to use it again to help my feet and ankles. I have edema in both sides. They are swelled to about 3 - 4 times their normal size. The swelling never goes down. And my blood pressure is A Lot lower now. My family doctor says I really need to get the swelling down, and my blood pressure up. It will lead to worse things if I don't. My recliner footrest doesn't go high enough to help them, and I can't wear compression socks because they make my pain even worse, totally unbearable. Our bed is an adjustable one, so it has all different heights and would help immensely.
I am also in need of a dependable mobility chair. My current chair was given to us and is many years old. It is my backup chair. We had bought a used one on Craigslist prior to that, but it broke down, and would cost more than it was worth to fix. So I have been using the backup. I need one I can rely on. Since I can't walk at all, I am totally dependent on it. When it wears out completely, I am in big trouble. We would like to purchase a new one, that hasn't been used, and has a warranty. The kind I need averages between 5,000 - 6,000.
We are also in need of a handicap accessible van. It is depressing not being able to go anywhere. To get left behind when I really would like to go. Scott used to be able to pick me up out of my chair and put me in the pickup, but as I mentioned, he can no longer lift on me. He traded an old car that we had, that needed work, for an old 1995 van. It has a really old chair lift in it. I can't sit up straight in it because the roof is too low. And it's not comfortable, but better than nothing. The worst part is; we've only gotten to use it a couple of times because it keeps breaking down. The heat in the back doesn't work, and it's leaking fluid from a couple different places now. It is pretty old, so we aren't totally surprised. It was great being able to get out of the house those couple of times. But now I'm stuck inside again. I can't wait for warm weather so I can at least go outside. We don't expect to get a brand new handicap accessible van. They are way too expensive (50,000 - 60,000). We are thinking one that is a few years old, but much newer than a 1995. Scott has seen ones going for around 15,000 that would probably be alright.
We have priced everything, and are trying to raise enough to get the things I have listed.
I thank God for His help everyday. Because everyday is a struggle, and without Him I would be completely helpless. However, the worse I get, the harder everything I do gets. I have so many limitations now, but with God's help I'm fighting to hold on to what I can still do. I truly appreciate any help I can get. I take nothing for granted. I never in a million years thought I would lose the use of my legs, much less become so sensitive to so many things, and have to live like I do with so many different problems. I am hoping that getting the things I need will not only improve my quality of life, but ease the stress this causes Scott. He wants to be able to get the things I need, and not being able to has caused him additional stress. He has always been a good provider, husband, and father. He is everything to me, and he So deserves less stress, and more good. I know there are lots of people in the world who can relate in one way or another. I just hope they are letting God be there for them, too. I'll admit it's hard to keep my chin up sometimes, but God is always here helping me through it all. Even on the days I don't 'feel' like He is, but I 'know' He still is. And I am truly grateful for Him every single day.
I am also So grateful for my many loved ones. To them, and everyone...Thank you So Much for your Support, Help, Love, and Prayers... Everything Helps! Please Share this, & God Bless You All! Thanks!