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BARBGEO's Photo BARBGEO Posts: 784
6/1/13 8:25 A

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Hi Valentine. Iam so glad you joined us! How odd it must be to have someone say they think you sustained something so long ago. That must be tough. It sounds to methe puzzle pieces are coming together...
I too have lived in isolation for many years, having gotten to a place two years ago that it is better. Time is a good healer. You hobbies, whatever they are, can help rebuild brain pathways. I read A LOT even though I have little memory of what I read. I began sewing again a few years ago ( grandkids arriving) and that helps to regain sequencing. I am not nearly as good as I once was, but the babies don't care! :D
There are many seasons in our lives. I am sorry you are dealing with this right now.

All the best,
Barb G


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TWINSFITBY40's Photo TWINSFITBY40 SparkPoints: (34,002)
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5/30/13 9:49 A

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Valentine,
Am glad I could help. I can also relate to you not wanting to inconvenience your husband. My husband takes care of our 19 year old son, who has Muscular Dystrophy which involves a lot of work, so I don't particularly like asking him for too much help. I am blessed beyond words that he doesn't mind helping me with anything I need. I guess I, like many women, was used to doing a lot for others and not so much for myself before the surgery. Now, my roles have changed and I have learned to accept help when I need it and I try to be helpful in as many ways as I possibly can to others'. I believe that in time you will find what works for you and your family and until then take it one step at a time. Have a wonderful day...Maria


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"Treat people as if they were what they ought to be and you help them to become what they are capable of being. "Johann Wolfgang von Goethe


-MARIA

LEADER - HEAD, BRAIN OR SPINE SURGERY SPARKTEAM


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VALENTINE81's Photo VALENTINE81 Posts: 61
5/30/13 8:06 A

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Maria,

Thank you for your kind and encouraging words.

I know that there are others who deal with far more than I have to deal with, but I still have to figure this out. It is not that being home is all that bad. I have hobbies to pass the time and I feel better when I am not out and about too much.

I really don't like being a burden to my husband. He has some significant health issues of his own right now and having to take off work to drive me to appointments is stressful for him. I just can't find a way around it right now.

I suppose that is the heart of the matter. I would rather be helpful than helped.

Thanks again,
Valentine

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TWINSFITBY40's Photo TWINSFITBY40 SparkPoints: (34,002)
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5/29/13 9:33 A

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Hello Valentine, I am so sorry that you are dealing with so many difficulties and so much isolation in your life. It is difficult dealing with any illness, let alone one that you have no recollection of getting in the first place. I can understand you trying to do normal things despite being physically challenged and having other health issues as well. I have also dealt with my fair share of limitations due to pain, discomfort, and feeling isolated after I had brain surgery. My life has definitely changed in many ways after that. Even though I have a supportive family, I still felt very frustrated and out of control at times of debilitating pain. There are many things I can no longer do and it took me a while to get used to the idea but I have to say that once I accepted it , I made little changes in my life that I could control and my life is better now. I pray that you feel better and that these symptoms get resolved and that even if you don't know how you got these in the first place, that there is something out there that will help control the symptoms. Please don't give up and don't let anyone tell you that this is the best you will be. That is determined by you not them. I added you as a friend, hope you will do the same. If ever you need to talk please let me know... Blessings... Maria


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"Treat people as if they were what they ought to be and you help them to become what they are capable of being. "Johann Wolfgang von Goethe


-MARIA

LEADER - HEAD, BRAIN OR SPINE SURGERY SPARKTEAM


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VALENTINE81's Photo VALENTINE81 Posts: 61
5/29/13 12:16 A

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Hello,

I have been reading posts on this board and decided to join this team because I think you all may understand where I am coming from.

I have a lot of health issues, and so I have a lot of teams here on SparkPeople to choose from. I never seem to connect with anyone or even to stay around very long at a time.

In the last year I have been told that I have the symptoms of a TBI. I have no memory of this, but my husband can remember one time about 30 years ago that he had to wake me up every couple of hours. I have my medical records from that time period, but they are very incomplete. So while there is some evidence that something happened, I have no idea what it was.

I am still having trouble understanding all of this. Apparently, the symptoms have gradually worsened over the years to the point that I no longer feel safe driving and doing some very basic activities make me too dizzy to walk across a room without staggering.

I have done some PT and OT, but I am running out of appointments allowed by insurance for the year. At first they told me that I could get a lot better, but it would take a long time. Now after a few months, they say that I am as good as I am going to get.

Because of ankylosing spondylitis (arthritis of the spine) and SI joint dysfunction, I have been exercising in the pool for several years. It turns out that, even if I can figure out how to get there because I am not driving, it is a major trigger for the dizziness and headaches.

I am trying to figure out what life is supposed to look like now, but all I can see is the isolation.

Sorry for the depressing rant.

Valentine

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