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painismylife

Active member
Joined
May 11, 2014
Messages
35
Reason
DX FIBRO
Diagnosis
02/2011
Country
US
State
SC
Since being on this site, I have been replying to posts, trying to encourage others, and things like that. I did not want to come to this board so soon, but...

I have HAD IT with pain! It has robbed me of so much time I will NEVER get back, so much LIFE I am not living! And by the way, the road to disability SUCKS!

My son is 10 years old. He is now living with his dad because of this condition, disease, diseaseS, symptoms, whatever you want to call them, because of it, I get to see my reason for being for a grand total of 4 days a month! He doesn't even want to come on those days because, in his words, "You are always in the bed with migraines and stuff." I know he is just a kid and everything, but if he only knew the amount of EFFORT I put forth to NOT be in the bed for the majority of the time he is here...

I taught my son to play baseball. He can throw the ball almost 30 mph, he has a near perfect glove in the infield, he switch hits, he is either the lead-off hitter, the clean-up man, or the secret weapon at the bottom of the line-up, all because of me- and of course his natural talent. My ex wasn't interested in baseball because it wasn't a contact sport. And while his half sister and brother both went through a "chubby phase" at ages 8-10, he never did, because he was always active and always outside. I took the training wheels off his bike when he was 3! (I taught him to ride his bike, even though his dad was supposed to be SO GREAT on a bike when he was younger) I allowed him to swim in the deep end of my ex mother-in-law's inground pool at 4! (I taught him to swim. He was six months old on his first Memorial Day, and that was the first time he got in the pool. We floated and put our faces in the water. I gave him "swimmies" when he was a year and a half and two. He asked to take the swimmies off when he was three because they kept him from going under water, and at four, he was diving for quarters on the bottom of the deep end of the pool!) Sorry, got off track. I am just so proud of my son and proud of the things I taught him. And out of all my ex mother-in-law's grandchildren, he was the most active and the healthiest eater, but HE'S the one who ended up with a diabetes diagnosis (type 1)! But now, I cannot do any of those things I taught my son to do unless I am having a VERY GOOD day, and those are few and far between.

I have no job, no insurance, I've been denied disability twice, and now have to have a formal hearing in the hopes of getting it. My bills are all three months late, I am about to lose my car.... again. And I can't even sit at the computer for 30 freaking minutes to commiserate with my fellow fibro folks in cyberspace without causing myself even MORE pain!

I am sorry this is so long. I know I need to focus on the positive. I DO have good days. What I have is NOT terminal. So many people are much less fortunate than I am. I know what I NEED to do, and I try very hard to be positive most of the time. But today... it's day 6 of a flare up (one of the worst and THE longest), I am recovering from a 2 day migraine, and I am just not strong enough to be in that positive place. Yes, this is probably weak, childish, and inappropriate for a grown woman to ask of virtual strangers, but.... will someone please give me a hug (at least a cyber-hug won't hurt), a kind word, some encouragement, a verse of Scripture, something, anything? Please... :cry:
 
Yes! (But don't let me hurt you by touching you!) *hugs* You really do need this hug. I'm so sorry.

I really don't know what to say, because your situation is so tough! It's really difficult when the only way to go on living is by having money, but you're not in a condition to make money, and government assistance isn't working out. Are your parents or any family members available to help you? Sometimes depending on family can be necessary.
 
I'm sorry to hear that's been tough. *Internet Hugz* and more *Internet Hugz*. Many internet hugz your way.
 
Sure wish I'd know some words to say that would make a difference... but I *do* have that hug for you. I'm sorry for these things that you're having to deal with. :cry:

I'll share my favorite quote with you... it's often helped me through rough times:

It's by Mary Anne Radmacher and says "Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying 'I will try again tomorrow.' "
 
Thank you guys, so much. I really appreciate it. I apologize for not answering sooner. I have just been in the bed mostly. But yesterday was one of the best days I have had in a while. I really enjoyed it and thanked God for it. It felt good to be tired because I had been doing things, instead of being tired because... I was just tired. But again, thanks so much. I just can't tell you how much finding this site and all of you has helped me. It helps me feel like I am not alone. And you can read the stats all day long over and over again- about how many millions of people have Fibro. But when you are in the throes of a terrible flare that makes you consider going to the ER, and rolling the dice of getting a doctor who doesn't believe in Fibro, you feel ALONE. But here, I see there are people who go through the same things. It is not great that ANY OF US have to deal with fibro and all that goes with it, but it is great we have found one another. :)
 
But yesterday was one of the best days I have had in a while. I really enjoyed it and thanked God for it. It felt good to be tired because I had been doing things, instead of being tired because... I was just tired.

:grin: Well now how great is *this* to hear?! I'm so glad that yesterday was a good one for you! I really hope that it continued into today and that you're having another good one.

And yes, it's always a comforting feeling to know that whatever in life we're going through, someone else is dealing with something the same or nearly the same. (I have to say it that way because my daughter keeps telling me that we really can't tell the degree of pain or sadness, etc. that someone else is feeling so I've learned to add a disclaimer every time I say something like "I know how you feel.") :-o
 
Gently *hugging*... I hope things gets better for you soon. When times are bad, I usually think it can only get better from here. And if it does get worse, we'll I'm already worse, so I'll deal with it. Somehow, someway, we all make it through. It's so funny how we can have lasting days of pain so bad that it starts to affect our mood and then, waalaah, a good day. Don't know how long they last, but I usually do too much on them and pay. LOL
 
I saw your message last night and wanted to reply but we were having a severe lighting storm so I had to get off-line and shut my computer down. I am so sorry to hear that things are going so bad for you. Keep fighting and appealing the turn down denials of disability, and hopefully soon you will get it. It took me a very longtime to get mine and I know how scary and worry filled days can be with no money to pay the bills or go to the doctor. Then it is horrible when your children must go without as well. I hope and pray that your life will be blessed with good wishes and dreams that come true.
If you think you could work online, try doing web searches for blogs that pay you to write short stories on different topic's. Also read my blog here, Day 7, to get some more ideas. I am sending you many "HUGS"and I hope you feel better soon. Pain go away and don't come back for many a day.

We do care and wish you the best of luck. :)
 
Perhaps sending you a cyber hug is the best thing that we can do for you right now.

I really enjoyed reading everything about your son and he sounds like a really amazing young man. I can tell just by reading that how much that you love him. I do hope that you are able to get everything in your life straightened out so that you will be able to spend more time with your son in the future.
 
A very BIG HUG! You really need it, sweetie. I'm so sorry you are going thru this, but it's good you understand your kid. It's sad he doesn't want to come over to see you, but you understand he is just a kid so that's very good! I truly hope your life changes for the good soon, I applaud you for trying to seek some encouragement instead of sinking into depression, way to go girl! I wish you the best of luck!
 
gentle cyber /hugs to you.

I understand all too well about the pain.
 
It's been two weeks since you wrote this now, Jill... have you found anything to give you relief, and how are you feeling today?
 
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