I fight each day to keep my life as normal as possible some days I may not try at all. I don't want to stop being included in things but I don't want them to expect be to do everything also. I don't want to get so caught up in my disease that I do nothing but I need to have balance where it is ok to say I don't feel good, can we do it another day. It stinks because the guilt can wash over you if you let it. so I am asking how or what are some of the things you do to try and live a normal life. my disease causes me alot of different symptoms from skeletal,nerve, muscular pain, to fatigue etc... It is difficult to get up but once I am up I am ok for a while. Some of the days fatigue washes over me. what helps othere to keep yourself going? and Ideas will help because I may have tried some but not all about dealing with pain staying ahead of it, fatigue you name it I want to know.
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What Do You DO To Help Cope With Your Dx.
- By jhewels
- Posted October 31, 2009 at 8:38 pm · 11 replies
- In Getting a diagnosis
- Shared with the public
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11 replies
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- By dianes123
- Posted November 1, 2009 at 11:59 am
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It's ok to feel the way you do first of all do not blame yourself you nor any one of use asked for this, I normally get mad when people tell me have you tried this or that, the best ones are the ones whom swear by advil or eleve like 3-4 tablets a day. If only it was that type of pain. my family has seen my body going to waist, I used to be 200 lbs of mostly muscle and now I am 65 lb less and mostly stretfhed out skin and bones. They see that I fall alot for their own eye's and hearing me cry in pain when I need some one to talk me through hard times.
My poor mother has not seen me since here 1st operation for stomach cancer months ago, but my health has been so bad that she understands that I cannot travel the 6 hours to up state N.Y. from were I live in central southern Pa. Believe me your true friends and family are the one's whom know what you are going through , it's the ones that don't care that are the selfish one's and the first to fall by the side lines when it counts.
Remember to keep your head up high and on those days when you get out of bed but do not feel like you can't get through it I either lay on the couch or go one the computer ad try to stay out of bed, but then for me to get back in bed I must go up a flight of stairs which for me is way to painful and dangerous.
And to he double hockey sticks with the rest.
Take it one day at a time and do not forget that weather makes a different on your body also.
Diane
- By t-head
- Posted November 1, 2009 at 12:52 pm
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Hi!
I'm a newbie to the group. Not an expert on much of anything, except pain. Some days I wish I could just kick myself in the behind! And maybe include my hubby!
One day when feeling particularly low, I pulled out a box of blank cards and sent greetings to people i usually touched based with only during holiday season. By the time I finished, my mood had lifted and I had actually accomplished something. But the real reward came later. I heard from back from several old friends who enjoyed opening a card rather than a bill!
Hang in there!
t-head
- By spiritlove
- Posted November 1, 2009 at 8:55 pm
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Since I've been really bad for almost two weeks with pain etc. I can really sympathize. So sorry you're having such a rough time. I can't imagine a flight of stairs right now.
When I'm like this I often go on Inspire and look for others who need a friendly shoulder. It helps just to feel you're not alone.
Your true friends will learn to make concessions for how you feel and be glad when you can do something. Try not to let yourself get guilted into doing something you don't feel like doing. The fatigue is the worse. Particularly when there's no relief after a long sleep. Somedays you need to let yourself sleep because your body is telling you it needs it.
Sounds counterproductive but have you had physical therapy with someone who understands your illness and gave you exercises that help? It really can help.
I'm sorry to hear about your mother. Pray she is doing OK.
Just know there are so many of us who understand, you're not alone. Please don't let people make you feel you don't measure up. This morning My neighbor asked "How are you?" I said "I'm OK." Her response was "Just OK?!" I answered "Yes! I'm just OK." and shut the door. I felt like hitting her! Had I told the truth I would have said I'm miserable.
Know we're here for you.
spiritlove
- By dianes123
- Posted November 3, 2009 at 6:13 pm
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Spirit Love,
I can see where you are coming from, sometimes my own husband doesn't understand that I really do not feel up to going out but he pushes me and always the same excuse [ you need to get fresh air, I am a dmn smoker tell me what fresh air is going to do to help.
I was in a really bad place just last week when I ran out of my meds and I had a script to refill but no cash, I kept wanting to go to the ER but without insurance I just cannot aford it, 2 weeks prior I did have to go in for a fracture ankle then to a specialist the next day, I am still waiting for the bills for that one. So my husband took my script and went to the pharmacy I used to work for and gave them a check for it, he said he just couldn't take me being in so much pain, when he came home just the one med was $264, I almost dropped dead that is what Rite Aid charges for 1 month of my script. I told him that Walmart the same stuff just costs $138. Days later I went back and told them what right does a major chain pharmacy have to make a 100% profit from the same meds? And that was with my discount card which took off 20%. So there goes a big chunck of my SSD check, I have tried to get insurance but once they find out of all my pre-exsisting conditions including my ow cancer from 2007 the price goes way up and I cannot use it until after a year of paying into the plan.
As always I think we all go through the "good" neighbor, but now I ask where were they the other week after I fell down in the back and was screaming for help for an hour in the rain and mub and I heard there door open when my husband came home and found me just almost in a sitting position after an hour of trying, they go Oh was that you. It was early afternoon not in the middle of the night you could see me?
Yesterday am ex-coworker was in a store in town while I was there and comes up stating how I am just wasting away and how much she has gained since quiring smoking a year prior (she really did ballon up:) ) I told her I would gladly put on every lb. plus if it would just stop this pain 24/7. I guess they see me as being healthy I just do not see it when I look at myself w/o clothes on it's hideous all that streached out skil no muscle tone weaving about falling not being able to see just a blurr to me that is not healthy.
I am sorry for ranting It just isn't fair, all my life I had to strugle now that I am getting older I am falling apart and I am just 48 years old!! I cannot play with my grandchildren and believe me I know how precious they are, my second grandson I found dead in his crib when I came over for a 1 day visit and barbque, I just walked in my daughters house and my oldest grand son comes jumping up all excited grandma and grandpa big hugs all around and I haven't seen Gabrielle in almost a month my daughter said he was napping and it was ok to go in cause it was awhile ago, I walked in and looked at him not seeing his face but he was laying on his side and something didn't look or feel right, I called my daughter in emediately I don't know why but she said that's how he sleeps and he could turn himself over on his own I touched the side of his face and it was ice cold I picked him up and just screamed for my husband and my daughter took him out of my hands he was blue, they rushed him to the hospital which was just a few blocks away and she was giving him cpr all the way but to no availe we lost him to the day of his birth 2 mos. old. November 5, 2006. Thursday will be his 3rd anniversery if you want to call it that. OMG I am so sorry why did I type all this, must be loosing it, I am so sorry but I think I just needed to let some things go, sorry again,
Diane
- By spiritlove
- Posted November 5, 2009 at 9:11 pm
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Dear Diane, Sorry I'm just getting back to you. Rant all you want, that's why we're here.
God love you. You've had to deal with so much.
As I started to answer this Al had a frightening choking spell and I stopped to take care of him.
Now it's gotten late and I need to close.
I read your inspiration and profile. I'm sorry you have suffered so much in such a young life. I had a lot of hard knocks in my early life so I feel a lot of empathy for you.
I had a lot to say but, because of what is happening tonight, I really need to go. I wanted you to know I saw your post and I do care. Things have just been tough this last couple of weeks.
Take care. If you would like to add me to your friends please send me a request. I don't want to overtax you by another obligation.
We'll be praying for you, if you don't mind.
Take care.
Much love and concern,
spiritlove
- By jhewels2
- Posted November 10, 2009 at 6:51 pm
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I am sorry if i did not reply back i did quit the group but i rejoin when others responded to my post I did want to let you know that your support means alot. I am actually having a good run of things that is till my disease flairs but this is the time to make the best of it. i am doing ok . thanks for the support and feel free to email me when you want to chat!
- By jhewels2
- Posted November 10, 2009 at 6:55 pm
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Hi dianne i just wanted to know you will find me under jhewels2 I quit and rejoined and i wanted to touch base with you. I am actually having a good stretch. I have been able to do christmas shopping go out with my husband, and my daughter comes home from florida after visiting with my family. i am enjoying the time I am pain free and I am going to give her her new phone I bought her me and my husband. I got a new phone it is my new toy! part of christmes present with the web included. well I hope to chat again soon keep me postede to what is going on with you!
- By dianes123
- Posted November 12, 2009 at 7:41 pm
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Spirt Love,
I received your message a couple of days ago but unfortunately was on my way out to get "fresh Air" and do a little grocery shopping. Well wouldn't you know that coming into the house from where we park our car I just have to get up 2 lousy wooden wooden uneven steps and I would be on the brick patio. Needles to say it the same steps that I fell on and couldn't get up in the rain for an hour until someone came home. I have been practicing with someone with me and my cane and thought I got a hold of it, so my husband is laden down with all the grocery bags and instead of waiting for him I tried to do it by myself. I got up on the second step lost my balance went almost running forward to try and gain back my balance and whamo struck the brick patio full force my head bounced twice each time I saw very bright lights. I injured my left side really bad, broke my glasses, sprained my wrist and I think fractured at least 2 ribs. With all the meds I am on it still hurts like the dickens. No I didn't go to the ER, no insurance, and after looking it up on web-md they really do not do much for you anyway anymore. They do not even tape you up, so I just remind myself to have a good cough every hour to make sure my lungs keep expanded or else I could come down with phnemonia. I thank you so much for your request and have invited you for a friend.
I read your page also and I am originally from Hackensack, N.J. then moved out to Hackettstown, N.J. We moved down this way for a job my husband had which he no longer does, I started to work pt for a pharmacy and ended up ft as an shift supervisor, well that didn't sit to well with some of the older ladies not in age but time worked there, but they didn't understand that I had been an assistant manager for a large hardware store (big box) so I knew a lot more, but after a couple of years thing was going ok. Those were the only people I knew in this small town, and now they think I am just living the high life on SSD, what a laugh.
Like you I am mostly alone except for my husband and 20 yr. old son, but UCP is trying to get me ok'd for an assistant to come in 5 days a week to help me with some personal stuff and the best is that I hire the person so at least I can get someone that I can get along with I am surely god will help me choose the right one, I used to hate firing people whom didn't work out in the stores, it's funny the Manager always made me do that type of thing 9cowards) but when I explained things to them they understood.
I am also sorry to here that things aren't going to well for yourself also, I will keep you in my thoughts and prayers.
Thank you for your support,
Diane
- By dianes123
- Posted November 12, 2009 at 7:50 pm
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Jhewls2,
I am so glad you are feeling better for the time being, I hope it will be a long time, but with winter you never can tell? Now the holidays are upon us and that's a stressful time so rember to take care of your health first and formostl This group keeps me going, I love helping people and having a place to either rant or to get info from so don't give up on us!! Someone will always will answer your call for help and if not just change the discription of what's ailing you.
Take care and I hope you have a good run with your health.
Diane
- By spiritlove
- Posted November 12, 2009 at 9:24 pm
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Dear Diane123,
So sorry to hear about your accident! Broken glasses? Are you going to be able to get them fixed? I've been off a few days myself.
You're right my bosses always left me to do the firing. It was really tough when it was a supervisor who had been one of my bosses and I had to ask them for their keys, etc.! They were cowards.
You're right about the ribs and I'm glad you try to remember to cough. What about your wrist? How is it doing.
I do hope UCP is able to get you help. Just the socialization will give you a boost. I fought the housekeeper and agreed to have her while Al was laid up. The first one was nice but, yesterday, a new one came and she was a delight! Just having her around brightened the day.
Perhaps you explained and I forgot, but aren't you eligible for Medicaid? If not see if they have a local Community Health Service. I think they're a pretty rare animal but, it's worth a shot. They work with uninsured and low income to get them what help is available.
Hope you're feeling better today. Let us know how you're doing.
spiritlove
- By spiritlove
- Posted November 12, 2009 at 9:32 pm
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Dear jhewels2,
Glad you decided to come back.
It's always good to hear when someone is having a respite. Please be careful you don't overdo it. I know how you want to keep running for fear of when it will hit but, it pays to pace yourself so it lasts longer.
Enjoy yourself while you can. Best of wishes.
spiritlove
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