I am back again, sorry it's been a while :

General
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Hey Everyone,

It has been a while again since I have been on. I see new people and a lot of new posts.

I have been busy being mom and dad to my two youngest kids. We have been going and going to appointments, meetings at school for my son. He has several IEP's and we had to add one at the recommendation of his neurologist. In case I didn't say, my son has been diagnosed with neurofibromatosis or NF1. There are many symptoms, some he will have, some he won't. We just don't know as time goes on which will show up. I am hoping he will be symptom free, but I don't think that will be the case with him. My daughter is 12, almost 13 going through puberty and she tries the patience of the best of people. A lady from church took the kids overnight for one night and she told me my daughter always has an answer, is stubborn and is angry. I know she is angry inside and I wish if she won't talk to me she would talk to her counselor, someone at school or at church. It's due to past relationships i have had.

We went through a horrible abusive relationship, directed at me most of the time. He was so subtle I never knew I had become nothing more than a shell of a person who he controlled. I didn't know how to leave, he took my money. He convinced me he was paying the bills with it. He has ruined me financially for the rest of my life. I had a breakdown at work, and things spiraled for a couple of years afterward. We stayed at a women/childrens center when he was taken to jail. They helped me get an apartment. A very long story short, i am no longer able to work due to severe depression, anxiety, PTSD, chronic fatigue syndrome, fibromyalgia, adult onset ADD and something else..just can remember. The fibro fog is bad, and I am not used to not being able to keep my thoughts straight or constantly forget why I am in a room, or where I am going. My hands shake, it is hard to sign my name sometimes. This all sucks to the end of the world.

I think about this, like I know a lot of you do as well. It is a lifelong disease, and most of everything else that goes along with it is as well. I know each day will be a new day, different levels of pain, different parts of your body in pain, sometimes to the point you don't want anyone to touch you. But I never, ever refuse hugs from my kids. They and I are all we have...each other. It's hard for them to understand something they can't see. As many of you have said, people just do not understand the "invisible illnesses". I get tired of people asking how I am, and it's either, "I'm ok" when I'm not, or I'm hurting today, usually my pain levels are high. I don't know, it is easy to get discouraged with this and all the stress life seems to toss my way. It's cooler outside and I would love to wear a sweatshirt and pants, but I get too hot. I will sweat on a 60 degree day with cool wind. I weighed myself this morning, and I have put 7 lbs back on and I don't know how I did it. So now instead of wanting to lose 20 pounds I want to lose 30. I have no idea how to do that. When i go for walks, it isn''t very far and I feel fatigue and my hips, knees, thighs and sometimes my back hurt. My shoulders start hurting, like they are objecting to have my arms connected. It sounds like complaining, but all I am doing is sharing what i feel, and probably what others feel too. My weight gain, could be I am eating more. I have a goiter, maybe my thyroid is out of whack. I cannot see a doctor until after Oct 1. I have no insurance until then.

My pain levels have been moderate to high most of the time. The night sweats are just bad as the pain. I sleep with my window open and fan on, even when it's down in the 30's and 40's I sweat and have to change my t-shirt. Some times when I shower it takes everything I have just to take a quick one. Afterwards I feel exhausted and just want to crawl into bed. The days are getting shorter and I have this continuous feeling of dread. Along with everything else I also have SAD. I hate the winters, the cold, the snow, everything about it. I don't think people realize the pain can be very tiring. Those that have nothing nice to say, should either not say anything at all, or walk a week in my shoes, then come back and tell me to "just get over it", or "its all in your head". My so called family are like that. I have a wonderful church family, my family doctor helps me as much as she can. I have gone to physical therapy, but I found it didn't do much good for me. So I pace myself, some days I don't do anything, but most days I try to do some cleaning. What I used to do in one day, now takes me 3-4 days.

My son, who I have talked about a little bit here will be having surgery on his eyes on October 5th. He has lazy eyes and his opthamologist feels he is a good candidate for the surgery. The inner muscles on his eyes are strong. Once they "loosen" the outer muscles he'll be able to keep his eyes together. He will finally be able to see one of everything, instead of two. He also has ADHD and ODD. He can be a handful along with my daughter. My son's psychiatrist told me today that i need to take care of me. Just not sure how to do that. I try to nap, most of the time they are short. I have errands to run when they are in school, and my own appointments as well. Some days i don't have time for me. By the time they go to bed, I am ready to go to bed, knowing it's probably gonna suck, but maybe this will be a good night. Funny how this changes your way of thinking and you have to try to not dwell on the bad, or find a way to deal with it so you can carry on with your daily things.

The one thing I want most of all is to be able to go away for 3-4 days, relax, recharge and enjoy being me. Not having to get up and pry the kids out of bed for school. Not having to run all over doing errands and then come home exhausted. I think a 3-4 day hiatus isn't asking much, and would do me a world of good, and my kids. I believe I would be able to deal with and parent more effectively. I know where I want to go, and too bad there are not support groups here. I wouldn't mind having a friend come with me, we both could relax and kick our feet up. Any how that was just a thought I keep with me, and hope one day I will be able to do sometime soon.

I have to go. My son will be here soon, then we have to go pick up my daughter. I would love to have conversations and talk to anyone here that understands. I need friends, and I want friends. I know I haven't been here for a while, this past month has been crazy. Once the surgery and follow up appointments are done I should be on more. Geez...I just got to thinking, by that time, then we have the wonderfully stressful holidays coming up...ugh.

Gentle Hugs to Everyone,

Hope to hear from you and if you need an ear, i have 2 ready to listen (well, read here...)

I hope everyone has a low pain day.

Dawn

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You are a very strong woman, Dawn. Considering what you have as a health challenge, you have done well. I hope that you will find a companion in your life that you are deserving of. Be patient, they are out there!

WE will be praying for your little one, that he comes through the surgery well, and that all is well.

Hugs,

SK

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Hi Dawn,

Welcome back, been enjoying your photos. Keep praying for good people to come into your life, ugh, and good doctors. Good luck to your son with his surgery. He will be in my prayers.

Take care,

Allergic

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Wow, Dawn, you have so many responsibilities beyond your own fibro management. My hat is off to you for dealing with them, esp. with the issues that your son has. I am truly sorry that he's going thru so very much. I will pray that he doesn't get any of the symptoms from neurofibromatosis. It's a heck of an illness for anyone to have to face, let alone a kid.

I too have a lazy eye and had the surgery years and years ago. I'm sure your son will be delighted to have his eyesight "restored" so he has single vision. I am willing to bet that some of his issues in school will be diminished once his eyesight is properly sorted out. I don't know how the poor guy could even concentrate at school given that he has double vision. Thank God that we live in a time where such things can actually be corrected.

Like SK says, I hope you meet someone nice to spend your life with. They are out there; my next door neighbor is one.

Are you on Cymbalta? If so, that could be giving you the sweats.

Also, would you consider therapy for the kids? It might help with some of the anger and confusion they have.

Hope you get a good night's sleep tonight.

Hugs,

Petunia

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Hi
Wow you have a lot going on! so much to deal with, and on your own!
I hope your sons op goes well and that it’s not to stressful for you all. I also have a daughter of 12, and it can be tricky for them to talk, it is hard for our families it see us in pain and especially children. If I want to get my daughter talking about her feelings I normally tell her a story a bout me when I was young that she can relate to, kids need to know that no matter what they feel, that it’s alright and normal.
Best of luck hugs
Xoxo

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Yes, I am taking 90 mg Cymbalta. I have taken it for a long time, so not sure if it is what is causing it or surgically onset of menopause still kicking me around a bit. Both of my kids and I are in counseling and have been for the past 3 years. If not, I am not sure what they or I would be like right now, dysfunctional at a minimum. I am hoping there is a nice guy out there for me. Seems that each year that goes by, ... i don't know. Anyhow I hope you have a great evening and low pain.

Hugs,

Dawn

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Thank you. I do pray and I am hoping to meet someone soon.

Gentle Hug

Dawn

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Thank you. He will be having surgery on both of his eyes. His school seems to be accommodating if need be. I just wish it was over with. I hate the waiting.. I will keep you all up to date on how he is doing.

Gentle hugs

Dawn

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Thank you OMG, it's tough, one day she is happy and talking and laughing, and the next thing you know, it's eye rolls and glaring, but not a word said. My son is having it done on both his eyes. I am sure it will be so awesome for him to see one instead of two of everything. Will keep you updated.

Gentle Hugs

Dawn

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Hi Dawn, thinking of you today, hoping life is being kind to you! Sending you a huge hug!

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Hey SK,

Thank you, and we are having our trials again. My daughter left a huge knot in her hair, it took me an hour to brush it out. She was going to cut out all the knots, she wouldn't have had anything left if she did that! So I brushed it out, even though my shoulders, arms, wrists felt like they were on fire. Tomorrow they don't have school, so after their counseling session, she is getting a hair cut. It's down to her waist and she said she was sick of it and the knots. The hospital called me today to tell me what time to be there and what he can and cannot have before his surgery. It just kind of made it really real and feeling anxious. I am going to try my best not to let him see, I don't want him to be afraid. Just too many things going on again, and my mind just doesn't want to wrap itself around any of it, so it all just jumbles around up there. Not sleeping well, partly from the pain and partly from everything that is going on. I sometimes just don't know if I can do this, or for how long I can do this. I hate complaining to people about my pain, and just start saying I'm ok. It's hard to be alone and doing all this, it really overwhelms me sometimes...well most of the time. I wish I had someone I could hang with, go to the park with, just to have to talk to. I am feeling very isolated and alone right now. I told my mom when his surgery is, and she seemed like it was no biggie. So I think I will be sitting at the hospital by myself. I'm gonna go right now, I hate crying all the time. :(

Gentle Hugs

Dawn

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Hey Dawn,

I think you are very wise to keep your very natural anxiety about your Son's eye surgery from him. These little ones do not need to absorb all of our worries, it is an overload on them!

Use your strong faith to get you through this, call the minister to come sit with you at the hospital, if he cannot come, perhaps someone in the congregation who is also alone and lonely could come to be with you! If not go to the hospital chapel, and you will find others to comfort you there.

I wish you had a friend too, someone near you. I am very fortunate to have my Mom with me, brought her to live with us several years ago, I love her dearly, she is the kindest, gentlest of souls. Other than her and the little grandkids coming, I am pretty much isolated too.

So we just have to come here and pour our heart out! It helps, and it is to ones who understand exactly where you are, how you are feeling and dealing.

Hair conditioner, even on dry hair will help the knots. The Johnson & Johnson no more tangles is another good one, either will help you get the knots out without breaking her hair or your arms and shoulders!

Your Son will be in the best of care, these Doctors are so well educated and trained, and are so very wonderful with the little ones. Please allow me to ease some of your fears and just imagine me there with you.

When is the surgery, Dawn?

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Hey SK,

My son's surgery is next Friday, October 5th, one week from today. Geez, this next week is going to go too fast for me. Thank you for your words, you do understand what i am going through. Today is a high pain day. My arms, shoulders, wrists, thighs, hips, ankles and feet hurt today. I guess I could have just said I hurt everywhere. It's hard to deal with the pain and everything else. My mom is all about my younger sister. So I have accepted the fact that it is going to be that way, it always has been and always will be. But at times like these I wish I could have her with me. I do love her. Gotta go and try to take a shower.; I used to enjoy them, and on days like this I dread them.

I hope you have a wonderful day.

Gentle Hug

Dawn