Hi all. It's been quite a while since I've last posted. I ended up being in the hospital much longer than I ever could have anticipated. While I walked into the hospital on the day of my surgery, I woke up after surgery not being able to move or bare weight on my legs. I was transfered to another hospital for rehab (there wasn't an open bed at the original hospital). I came home on June 25 (yes, 23 days in the hospital) in a wheelchair. We don't know why my legs don't work. I've had every test, it seems, known to man that could give a logical answer. Now, it's time to look for the obscure answers.
The surgery itself was, as far as we can tell, a success. At first, my legs felt like there was electrical wires running through them and touch was kind of shocking. Now, that has finally subsided, but the last few days, I've noticed that my bones themselves actually seem to be in the most pain. I'm not sure what that means. Surgery does strange things to your body, and can trip hidden issues sometimes. We're thinking that may be what happened.
The scariest part for me right now is how on Earth we'll survive financially. I can't do much for myself right now, and certainly can't drive, so I'm not able to be released from medical care for work in order to claim unemployment yet. I was the one to pay the mortgage and a few other bills. Now we have even more bills, and only one income. Mortgage and feeding my family is a real concern right now.
The doctors are saying that they think that my paralysis is temporary because I have sensation in my legs and my reflexes work as well. But, there is nothing conclusive to prove that my condition is temporary or permanent, and there is no timeline on the temporary part. I've passed most of the "expectations" of temporary that the doctors were hoping on.
Beyond the obvious medical and financial challenges lies the ones of the family structure. My husband and SD now have to do everything around the house and assist me a great deal. My husband built me a ramp to get in and out of the house, but it is not something that will allow me to get myself in or out of the house by myself because it is too steep. He couldn't make it any less steep because of budget and the length of our front yard. We're now looking into our insurance covering a electric wheelchair so that I can use the ramp independently.
His parents have helped us out a bit financially; my parents haven't and probably won't. His parents have paid for the ramp that Shawn built and have given us some money towards a electric chair if insurance doesn't cover it.
I need your prayers now more than ever. I try to keep on the positive end of things and just keep working with the therapist that is currently visiting me three times a week to work on my legs. But it's not easy. I'm definitely frustrated and sad, and feel very self-conscious when we're in public. I have a walker that I use my upper body strengh to get myself from my chair into the van or a different seat or to use the bathroom, but it's very tough. And emotionally, it's hard to be so dependent on others - I was a very independent person. Our house is not conducive to a wheelchair, so we've made the best of what we could to give me as much mobility as possible.
The adjustments and challenges are hard on all of us in the household. My husband, Shawn, is doing very well in being there for me. It's hard on him, though, and he's afraid for me (he's not said so really, but I do see it in his eyes). And I see the strain in my SD's eyes. I just pray we'll all get through this intact.
Prayers are desperately needed, and greatly appreciated.
The surgery itself was, as far as we can tell, a success. At first, my legs felt like there was electrical wires running through them and touch was kind of shocking. Now, that has finally subsided, but the last few days, I've noticed that my bones themselves actually seem to be in the most pain. I'm not sure what that means. Surgery does strange things to your body, and can trip hidden issues sometimes. We're thinking that may be what happened.
The scariest part for me right now is how on Earth we'll survive financially. I can't do much for myself right now, and certainly can't drive, so I'm not able to be released from medical care for work in order to claim unemployment yet. I was the one to pay the mortgage and a few other bills. Now we have even more bills, and only one income. Mortgage and feeding my family is a real concern right now.
The doctors are saying that they think that my paralysis is temporary because I have sensation in my legs and my reflexes work as well. But, there is nothing conclusive to prove that my condition is temporary or permanent, and there is no timeline on the temporary part. I've passed most of the "expectations" of temporary that the doctors were hoping on.
Beyond the obvious medical and financial challenges lies the ones of the family structure. My husband and SD now have to do everything around the house and assist me a great deal. My husband built me a ramp to get in and out of the house, but it is not something that will allow me to get myself in or out of the house by myself because it is too steep. He couldn't make it any less steep because of budget and the length of our front yard. We're now looking into our insurance covering a electric wheelchair so that I can use the ramp independently.
His parents have helped us out a bit financially; my parents haven't and probably won't. His parents have paid for the ramp that Shawn built and have given us some money towards a electric chair if insurance doesn't cover it.
I need your prayers now more than ever. I try to keep on the positive end of things and just keep working with the therapist that is currently visiting me three times a week to work on my legs. But it's not easy. I'm definitely frustrated and sad, and feel very self-conscious when we're in public. I have a walker that I use my upper body strengh to get myself from my chair into the van or a different seat or to use the bathroom, but it's very tough. And emotionally, it's hard to be so dependent on others - I was a very independent person. Our house is not conducive to a wheelchair, so we've made the best of what we could to give me as much mobility as possible.
The adjustments and challenges are hard on all of us in the household. My husband, Shawn, is doing very well in being there for me. It's hard on him, though, and he's afraid for me (he's not said so really, but I do see it in his eyes). And I see the strain in my SD's eyes. I just pray we'll all get through this intact.
Prayers are desperately needed, and greatly appreciated.
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Re: A new challenge, and further prayers needed
Sat, July 5, 2008 - 1:46 PMPrayers you have. It's good to see you posting, again. We can be more of a support if you are online, after all. At least, we are people to talk to who aren't caught up in the situation itself.
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Re: A new challenge, and further prayers needed
Sat, July 5, 2008 - 9:21 PMyour in my prayers!!
Hopefully you'll have answers soon!
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Re: A new challenge, and further prayers needed
Sat, July 5, 2008 - 11:13 PMI will say a few for you too. Have you checked into disability? It pays you more then unemployment or check with Social Security. There may be some benefits that you will qualify for until this is all cleared up. -
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Re: A new challenge, and further prayers needed
Sun, July 6, 2008 - 2:06 AMUnfortunately, I was a contractor at my last job - got cut on May 30 (one of over 700 to be cut in total), so there are no benefits at all including disability. The agency I worked for doesn't offer it. I've looked into Social Security already, and don't yet qualify to apply. The doctor(s) needs to state that it's an actual disability before I can get anywhere - and Social Security is a tough and very drawn out process. I will, of course look into that when the time comes up (or if). Once I'm able to get to working, I should be able to get vocational rehab help to get me a better job - though I already do desk work. It's more of a matter of playing the waiting game right now.
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Re: A new challenge, and further prayers needed
Sun, July 6, 2008 - 11:47 AMDonna,
So sorry to hear of the complications. Try to keep your mind clear, you need it to deal with getting yourself well. This can be beaten, and you will absolutely be able to do it! Try to focus your mind on making the neurological connections necessary to make your legs work again. :)
I'm so glad you have a comfort zone here. It's important to have a comfortable and safe place to go. We come together here as various components of step families, but we get to know each other as individuals, and friendships are formed. Thank you for trusting us.
Thinking many positive thoughts for you and your family.
Shannon