I am Julie, Daniel's Mom. Daniel has Polymicrogyria. His brain is deformed, caused by a virus in utero. He has seizures, developmental delay, motor dysfunction, severe reflux, respiratory problems,etc He is unable to speak, eat by mouth, or walk. Visual strength and a gentle touch are his means of of communicating. Daniel has strengthened my belief in miracles and faith. Enjoy. Share. Follow. Help. Laugh, Pray, make a new friend.
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Friday, July 13, 2018
Feeling alone
July 13, 2018
Sometimes I wake up, and I feel so profoundly alone, even though I have a bunch of people and animals living in my house. When I was in Florida, I found peace and time to open my mind. I was there for 18 days, from June 19 to July 6, 2018. Naples Florida precisely.. I am editing the vlogs now. I am always behind on my videos lately.
My mornings are tough. I wake up to reminders of walls that need painting, bills I can't pay, cat hair, and dents in the walls. If I have a nurse for Daniel that day, I take the dogs out, and I am usually still waiting for the pile of medication to kick in.
I am having hot flashes, and mood issues, and I feel like a human yo yo. I have no one to talk about it with. John has not once had a discussion with me about menopause, not once, he teases me sometimes, and says " there is nothing I can do to help you"...
So, on top of having severe depression, anxiety, fibromyalgia, and being the caregiver of a severely disabled child... and mother to a high school senior and soon to be law school student... I also have no one to talk intimately with about the emotions inside my head... except my therapist Christine, who is the best therapist I have had in 20 years of mental health treatment.
I have asked, nicely, on many occasions, more than three... that we kiss hello, and kiss goodbye everyday. But day after day goes by, where I wake up (because we sleep in separate rooms) and he has left for work without a word.
Waking up is hard. Because my sleep sucks lately, and I havn't been using the cpap machine as much as I am supposed to. Apparently I have been yanking it off in my sleep!
I was 264 pounds when I left for Florida, swollen... inflammation everywhere, overwhelmed with stress and concerns... but I was able to travel down by myself with Daniel and his nurse. It was not easy, but it was not stressful. Not at all. I don't recall anxiety... except when Daniel got agitated for awhile on the flight to Fort Meyers. Traveling with my husband, is stressful, he gets either angry, impatient, stressed, verbally caustic, or just flat out oozing anxiety.. And I still don't understand it, because being calm is so much more productive, and effective.
He screamed at me in public at the beach one night. I had drank 4 glasses of cold white wine when we were dining outside on the deck of the Boathouse Restaurant, It was so nice. being near the water, watching the boats, feeling the Florida breeze. As we drove the sunset, John was complaining how miserable he was. He hated eating outside. He was in a "bad mood". Etc. Etc. and I remember just sitting there, on our way to watch the sunset at the beach near where we were staying, thinking about how miserable he was, and that he had missed some precious moments. I guess its just me, I was kind of sweaty too. But I honestly like it... it makes my fibromyalgia go away.
At the sunset, I told a little girl that she is not supposed to take a bucket load of living SandDollar creatures out of the water (its illegal to live shell on the Gulf Coast) . and I think I made everyone uncomfortable and upset. Sarah Told me to be quiet. But she said it calmly. But John hollered at me, right there, "shut the fuck up Julie . Then he mumbled something so awful, I don't want to write it here." And I just had to leave. I couldn't stand there. I felt attacked, embarrassed, buzzed from the wine, and so profoundly sad . At that moment, with my sandals in my hand, I walked away from the beach. I just started walking, and crying... and trying to breathe because my heart was hurt. I intended to walk the 2 blocks back to the condo. And realized I had no key with me to enter the side gate. So I began walking back, and John drove right by, literally... not stopping, the sun had set, and just left. Then I saw Sarah, Luke and Thomas drive by. I don't think they saw me. I sat on a bench, at the corner of Vanderbilt beach Road and Vanderbilt Drive, and I starting crying. I felt like I need a release... because I am always trying to ride the unpleasantness of being yelled at. I was not drunk. But the wine helped me purge my emotions and embarrassment of being publicly scolded and sworn at.
There are moments, rare ones, where I will get loving sentiments, as opposed to teasing sarcasm... and at least theres that. The fact that I can't even get a kiss good bye, or kiss hello... leaves me so sad, and I just have to deal with it. And take a kiss from the dogs.
Mornings here are hard. I am the only one who cleans the house, and with a back injury, fibromyalgia, and depression... and an expectation that I not only clean the house, pay the bills, manage a disabled sons life, and everything with the cars... That I also "go to work" .... Yesterday, he told me to make an appointment to take the Honda for another estimate. I, on the other hand, have been trying to finish a pile of financial stuff... and TRYING to make a solid schedule to work. There is an expectation that I am completely flexible and also should be working all day.. and also should prepare meals and also should take better care of myself, exercise, walk the dogs, .....
So. I hate waking up every day. I resent living in a loveless rhythm of doing my own thing... and never being understood. Sitting on the deck alone. Night after night. Going to bed alone. Going through menopause alone. Going for an epidural injection, where I actually fainted, coming home... and although I was supposed to rest and not lift over 15 pounds for several days.... I received no assistance. Sometimes I get a hug. Sometimes I am asked, "what did you do today". Sometimes. Most of the time... there is no real communication. And I honestly just want someone to talk to, who listens. For a reciprocal meaningful exchange. So far, I have only my therapist for that.
I miss the beach.
Now. I have had coffee... walked the dogs, its Friday, I am getting my hair done. I so much on the "to do" list that it cripples me, if I let it. I have to fight back.
When I got home from vacation I stood on the scale, I was 250 pounds. so I lost over 10 pounds without trying. Just simply relaxing and exercising daily. Now, I am trying. And I just feel so damn sad that I sleep alone and only get affection when there is a result intended. But . I have people who need me. So. I am moving into my day.
Thanks. That helped. I am a 51 (almost 52) year old woman going through so much emotionally. Trying to survive and figure it ALL out. And its kind of sad some days. But I'm a positive person. And no one should ever be told to shut the fuck up by their partner, those words should never be spoken to a husband or wife. For me, its a regular event, because anger has a cycle here. And its not to be spoken of.
I am determined to live a life of love and gratitude. Don't abuse me. Please.
Thats enough. July 13 2018 . 10:41am
Sometimes I wake up, and I feel so profoundly alone, even though I have a bunch of people and animals living in my house. When I was in Florida, I found peace and time to open my mind. I was there for 18 days, from June 19 to July 6, 2018. Naples Florida precisely.. I am editing the vlogs now. I am always behind on my videos lately.
My mornings are tough. I wake up to reminders of walls that need painting, bills I can't pay, cat hair, and dents in the walls. If I have a nurse for Daniel that day, I take the dogs out, and I am usually still waiting for the pile of medication to kick in.
I am having hot flashes, and mood issues, and I feel like a human yo yo. I have no one to talk about it with. John has not once had a discussion with me about menopause, not once, he teases me sometimes, and says " there is nothing I can do to help you"...
So, on top of having severe depression, anxiety, fibromyalgia, and being the caregiver of a severely disabled child... and mother to a high school senior and soon to be law school student... I also have no one to talk intimately with about the emotions inside my head... except my therapist Christine, who is the best therapist I have had in 20 years of mental health treatment.
I have asked, nicely, on many occasions, more than three... that we kiss hello, and kiss goodbye everyday. But day after day goes by, where I wake up (because we sleep in separate rooms) and he has left for work without a word.
Waking up is hard. Because my sleep sucks lately, and I havn't been using the cpap machine as much as I am supposed to. Apparently I have been yanking it off in my sleep!
I was 264 pounds when I left for Florida, swollen... inflammation everywhere, overwhelmed with stress and concerns... but I was able to travel down by myself with Daniel and his nurse. It was not easy, but it was not stressful. Not at all. I don't recall anxiety... except when Daniel got agitated for awhile on the flight to Fort Meyers. Traveling with my husband, is stressful, he gets either angry, impatient, stressed, verbally caustic, or just flat out oozing anxiety.. And I still don't understand it, because being calm is so much more productive, and effective.
He screamed at me in public at the beach one night. I had drank 4 glasses of cold white wine when we were dining outside on the deck of the Boathouse Restaurant, It was so nice. being near the water, watching the boats, feeling the Florida breeze. As we drove the sunset, John was complaining how miserable he was. He hated eating outside. He was in a "bad mood". Etc. Etc. and I remember just sitting there, on our way to watch the sunset at the beach near where we were staying, thinking about how miserable he was, and that he had missed some precious moments. I guess its just me, I was kind of sweaty too. But I honestly like it... it makes my fibromyalgia go away.
At the sunset, I told a little girl that she is not supposed to take a bucket load of living SandDollar creatures out of the water (its illegal to live shell on the Gulf Coast) . and I think I made everyone uncomfortable and upset. Sarah Told me to be quiet. But she said it calmly. But John hollered at me, right there, "shut the fuck up Julie . Then he mumbled something so awful, I don't want to write it here." And I just had to leave. I couldn't stand there. I felt attacked, embarrassed, buzzed from the wine, and so profoundly sad . At that moment, with my sandals in my hand, I walked away from the beach. I just started walking, and crying... and trying to breathe because my heart was hurt. I intended to walk the 2 blocks back to the condo. And realized I had no key with me to enter the side gate. So I began walking back, and John drove right by, literally... not stopping, the sun had set, and just left. Then I saw Sarah, Luke and Thomas drive by. I don't think they saw me. I sat on a bench, at the corner of Vanderbilt beach Road and Vanderbilt Drive, and I starting crying. I felt like I need a release... because I am always trying to ride the unpleasantness of being yelled at. I was not drunk. But the wine helped me purge my emotions and embarrassment of being publicly scolded and sworn at.
There are moments, rare ones, where I will get loving sentiments, as opposed to teasing sarcasm... and at least theres that. The fact that I can't even get a kiss good bye, or kiss hello... leaves me so sad, and I just have to deal with it. And take a kiss from the dogs.
Mornings here are hard. I am the only one who cleans the house, and with a back injury, fibromyalgia, and depression... and an expectation that I not only clean the house, pay the bills, manage a disabled sons life, and everything with the cars... That I also "go to work" .... Yesterday, he told me to make an appointment to take the Honda for another estimate. I, on the other hand, have been trying to finish a pile of financial stuff... and TRYING to make a solid schedule to work. There is an expectation that I am completely flexible and also should be working all day.. and also should prepare meals and also should take better care of myself, exercise, walk the dogs, .....
So. I hate waking up every day. I resent living in a loveless rhythm of doing my own thing... and never being understood. Sitting on the deck alone. Night after night. Going to bed alone. Going through menopause alone. Going for an epidural injection, where I actually fainted, coming home... and although I was supposed to rest and not lift over 15 pounds for several days.... I received no assistance. Sometimes I get a hug. Sometimes I am asked, "what did you do today". Sometimes. Most of the time... there is no real communication. And I honestly just want someone to talk to, who listens. For a reciprocal meaningful exchange. So far, I have only my therapist for that.
I miss the beach.
Now. I have had coffee... walked the dogs, its Friday, I am getting my hair done. I so much on the "to do" list that it cripples me, if I let it. I have to fight back.
When I got home from vacation I stood on the scale, I was 250 pounds. so I lost over 10 pounds without trying. Just simply relaxing and exercising daily. Now, I am trying. And I just feel so damn sad that I sleep alone and only get affection when there is a result intended. But . I have people who need me. So. I am moving into my day.
Thanks. That helped. I am a 51 (almost 52) year old woman going through so much emotionally. Trying to survive and figure it ALL out. And its kind of sad some days. But I'm a positive person. And no one should ever be told to shut the fuck up by their partner, those words should never be spoken to a husband or wife. For me, its a regular event, because anger has a cycle here. And its not to be spoken of.
I am determined to live a life of love and gratitude. Don't abuse me. Please.
Thats enough. July 13 2018 . 10:41am
Thursday, July 12, 2018
Wednesday, July 11, 2018
Tuesday, July 10, 2018
Monday, July 9, 2018
Saturday, July 7, 2018
Friday, July 6, 2018
Wednesday, July 4, 2018
Tuesday, July 3, 2018
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