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How Do You Deal with the Negativity?


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Old 06-16-2012, 11:09 AM   #16
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Re: How Do You Deal with the Negativity?

I'm so glad this topic has come up. I too am in this situation with the house chores. but no kids/family around here. All far away. I too would be flat on my back for several days if I did the cleaning like is used to do - I was nearly OCD at one time.

Pain meds are only band aids to make you think you aren't hurting. anyway... Is there not a service our doctors can order for us? I don't mean they should come every week, or do the lite stuff.. but for the hard stuff. But, what is 'easy' for me, may not be for you. What is easy for me today, may not be easy for me tomorrow.

There must be some thing out there. Just to mop my floors is debilitating and can keep me in bed/sedate sometimes for up to a week.

Last edited by Administrator; 06-16-2012 at 11:35 AM.

 
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Old 06-20-2012, 02:54 PM   #17
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Re: How Do You Deal with the Negativity?

Well I did read all of your post and suggestions. Thank you so much for responding, listening. I am sorry to hear of all the other challenges out there, "perspective" it is all relevant to your situation. I know I have to stop being so controlling about the house and yard, my husband and I sat down and pulled our thoughts. He too has lower back pain and doesnt get why I just dont work in 5min intervals, I tried to explain I do...lol anyway we are all adjusting we moved last year from a 5k sq ft house to a 2k sq ft house and yet there is still 7 of us... So, lots of clutter. We r going to.rent a storage unit and haul it all away, then kids are going to sort and yard sale, they get to keep the profits for doing the work. We made a chorelist for rewards of course. And I was able to talk my husband into hiring a house keeper to come in once a week to do things like sheets, laundry, deep clean floors, walls, baseboards stuff like that. My family didnt realize it was such an issue with me and we agreed I should share my feelings a little better.lol bit for now we will see how it goes. I have a 24yr old, 13, 11, 3, and 1 year old in the home so you could imagine the laundry, toys alone and everything is always on the floor.lol

Now the fun task of finding a housekeeper, any suggestions on Interview questions? What to look for? Other than the normal stuff....

Thanks again for all the support you guys r vrsat.
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Last edited by sandiemas; 06-24-2012 at 09:25 PM.

 
Old 06-20-2012, 02:58 PM   #18
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Re: How Do You Deal with the Negativity?

Ask your friends, neighbors, hubby's co-workers, etc. I had called the larger cleaning companies but often they had requirements of having to work X amount of hours or X time s per month. An individual person (or small group) is usually more flexible.

Glad to hear you put it "all on the table" for everyone to understand. Not only will it help you, but the kids will learn empathy and self-reliance and team work.
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Old 06-21-2012, 12:26 PM   #19
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Re: How Do You Deal with the Negativity?

I only see my PCP now. My ortho had dismissed me since I'm not a surgical candidate at this time. so unless something comes up I don't need to see him. I have no other specialists now. Pain clinics are out (Florida=pain pill capital of the country) My PCP handles my pain meds (I like that only one doctor handles the meds - things can get too messy when you have too many doctors prescribing, even tho you tell them what you are already taking)

This boredom is slowly killing me. Anyone else feel like they are living in a locked cage?

 
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Old 06-23-2012, 03:59 AM   #20
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Re: How Do You Deal with the Negativity?

Jacki:

I had talked my orthopedic surgeon into a minimum of 1 visit per year with him for a review and evaluation. He understood that, off the record, I needed to see him to keep strong documentation for LTD and SSDI. He doesn't /industry seeing me, if nothing has changed then the eval is quick and he gets s on to his next patient.

I don't feel a total sense of boredom. I hate to say it, but I do have certain TV shows I enjoy during the day. In between those I may rest, make a necessary trip to the pharmacy or grocery (because I can't do long trips I tend to do 10-15 items per trip, and with the way neurontin plays with my memory I always think I'll remember key items and I don't, yet I still don't make a written list. And if I do I forget it at home. I can read light books ("cozy mysteries") and try to do that, though not always possible. I choose book series with recurring characters so I don't have to focus as much. We have 5 cats (had 3 but FIL just passed away in May and we previousl6 agreed to take his 2 upon his death). So I do walk around talking to them during the day.
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Old 06-23-2012, 03:04 PM   #21
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Re: How Do You Deal with the Negativity?

Yes, the bordom gets to me at times, but on that same note I get horrible side effects from over doing it. I am two years into this mess and went from a fulltime employee, foster parent, adoptive parent, casa advocate, girl scout leader, bunco host, weekly card games and bbq's to nothing! I do nothing but dr appt, small trips to pharmacy and wal-mart (they have electric scooters), of course still parent but no more fostercare, coaching, sporting events, girl scouts, so it has been quite an adjustment for me. But lkke pain az I have some tv shos thank goodness for on demand.lol. I also just started to do lamp shades, beading them it is slow and I can work in 5min intervals but gives me a project.

We all have to make adjustments, try to keep ourselves from going crazy and dwelling on the negative.
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C5-C6 tear/buldge
C6-C7 ACDF
T1 - T5 neuroforaminal, lesions, facet arthropathy
Disectomy L5/S1
Anxiety
PTSD
Chronic Pain

Last edited by sandiemas; 06-24-2012 at 09:26 PM.

 
Old 06-23-2012, 03:28 PM   #22
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Re: How Do You Deal with the Negativity?

Hi. When chronic ailments leave us disabled unfortunately only others who suffer can relate with you. It's like this: you can see a cast, see a neck brace, so seeing this people are sympathetic and helpful; what you cannot see is nerve damage, chronic fatigue, chronic pain, migraines, etc. Most of the world only believes what they can see to understand. This also falls into the categories of some doctors, our spouses, our family and friends. We are put into categories as lazy, non social, dramatic because they do not see our struggles, feel our pains. What the base things on is what we do on our good days. I can stack 5 cords of wood on a good day, unfortunately for the next three days I suffer and cannot even lift a gallon of milk. Disabling conditions make US VERY STRONG, we are not weak individuals. Those who cannot understand this are the weak ones. Stay strong and know that others who suffer DO UNDERSTAND.

 
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Old 06-25-2012, 06:13 AM   #23
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Re: How Do You Deal with the Negativity?

I spent a LOT of years feeling really sorry for myself OR fighting my situation tooth and nail, resulting in further pain/exhaustion/disability.
I know that it is different for everyone- but I finally found that the only way to fight the negativity was with positivity. For everything my disability took from me, I decided to take something back. I always wanted to write a book, I always wanted to have time to read really good books, I always wanted to paint/blog/etc...
It has been a rough transition, don't get me wrong. First I got crazy angry, refused to accept my situation, or just sat around and cried about how frustrating it was to have to ask for help or call someone to go to the store for me...but that just makes things worse. Physiologically, my body fed off of that negativity and I felt worse and worse on both an emotional and physical level.
When I stopped fighting the situation, I realized I could look back on the career I can no longer do with fondness. I can be lucky enough to have done something I loved AND have a chance to do something new. It may not make me a living and I might have some days when I have to just rest- but I have a chance to have a completely fresh start and in order to have a new life that I LOVE instead of HATE- I had to dispel the blatant negativity that was running my life.
I stopped crying about the fact that I couldn't run a huge horse stables anymore and instead enrolled in online equine classes that I've always wanted to take, and to just appreciate the days when I feel well enough to teach riding lessons, etc.
Of course I don't know your own personal limitations or desires- but I know how much it hurts to feel like you were amazing and now you are broken. It's a feeling of worthlessness and squandered dreams...but that's because we are so focused on what we have lost and not the opportunities we have gained.
I live in severe pain 100% of the time. It used to break me down- but today, it makes me strong, unique, and gifted.
This has been a long road and it isn't like I feel good about it every day- but the more I changed my perspective, the more I changed my situation and got my life back on a new track.
It's still YOUR life...my heart goes out to you and i hope you can find the peace and satisfaction you desire. Once you feel like you are LIVING again, you won't feel so much like other people regard you with pity anymore, either, and that's a sweet relief. They'll see the powerhouse you are. xo- good luck.

Last edited by sophia554; 07-10-2012 at 05:20 AM. Reason: typo

 
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Old 07-08-2012, 11:58 AM   #24
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Smile Re: How Do You Deal with the Negativity?

Cody, I'm sorry to hear about your depression. Sounds like a life changing experience. But here's the bright side you are not alone, you have family, friends, etc that will help you get through this. It will be tough but at the end of the day you will see results.

enveryone who's disabled can relate to your situation. Sending you hugs!!!!!

 
Old 07-10-2012, 05:17 AM   #25
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Re: How Do You Deal with the Negativity?

Your story of going from hectic/busy/FUN life to trying to be okay with lounging around because it's necessary- totally hits home with me.
And I also hope to adopt a child someday soon so your story is motivating to me.

 
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Old 07-13-2012, 11:34 AM   #26
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Re: How Do You Deal with the Negativity?

Quote:
Originally Posted by sophia554 View Post
Your story of going from hectic/busy/FUN life to trying to be okay with lounging around because it's necessary- totally hits home with me.
And I also hope to adopt a child someday soon so your story is motivating to me.
Adoption of a child is the most rewarding, thankless, timeless job you can have. It totally wraps your heart and provides you with a lifetime of unconditional love and happiness. I hope you get to a point where you can do it you will not regret it. Sometimes I feel bad that I am here in this place and not providing them with all the activities I should but, we are providing them with a loving home, which is something they didn't have, stability, education, and security. So although I get down and wish I could do more I am so greatful for what I do have and what I have done. In my life I have helped many children and families and touched many hearts I have to keep reminding myself of this and hope that once again I will be able to help others. But for now I am trying to adjust my new life and figure out how to live again... I really hope you find you bliss and get to adopt, feel good and be happy. Thanks for the post. Let me know how you are doing and if you have any questions I would be happy to help if I'm ables...
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C6-C7 ACDF
T1 - T5 neuroforaminal, lesions, facet arthropathy
Disectomy L5/S1
Anxiety
PTSD
Chronic Pain

 
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Old 07-14-2012, 07:19 AM   #27
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Re: How Do You Deal with the Negativity?

I really appreciate hearing about your hard work to keep on going. I have to keep reminding myself, also, of how much more children are of unique situations and people with different abilities.
If I can figure things out like how I will get my kiddos to a doc appt or if we can all take a family vacation without me holding up all of the fun, I think I'll be a couple steps closer to making the family dream come true.
The two things I have to offer are:
-a really loving set of parents
-a life around horses/farms
Are you able to drive/take your kiddo to a store, etc? That's my largest concern right now. I do have a supportive mom, though, who I am sure would have a lot of fun stepping into the grandma role.
Anyhow, I wanted to thank you for being an inspiration

 
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Old 07-21-2012, 08:50 PM   #28
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Re: How Do You Deal with the Negativity?

Quote:
Originally Posted by sophia554 View Post
I really appreciate hearing about your hard work to keep on going. I have to keep reminding myself, also, of how much more children are of unique situations and people with different abilities.
If I can figure things out like how I will get my kiddos to a doc appt or if we can all take a family vacation without me holding up all of the fun, I think I'll be a couple steps closer to making the family dream come true.
The two things I have to offer are:
-a really loving set of parents
-a life around horses/farms
Are you able to drive/take your kiddo to a store, etc? That's my largest concern right now. I do have a supportive mom, though, who I am sure would have a lot of fun stepping into the grandma role.
Anyhow, I wanted to thank you for being an inspiration
That is so much more than most these kiddos ever have or will have 'a set of loving parents' and a 'life around horses'. Horses are so therapeutic! When your time comes I think you would be a great adoptive parent. Kids don't care so much about trips and vacation the ocassional family game night, a good book, individual attention. Those are all things we all can give. I am fortunate to have a husband and adult daughter that helps with groceries, school shopping, etc. I am not able to do that at this point. Like last week my whole family 'accept for.me' went to magic mountain I was bummed that I couldn't go but thankful that my husband was able to take everyone. So things have a way of working themselves out and others step in when needed seems to work that way sometimes.

I hope you can find your comfort zone and get some relief from your pain. I am still trying to find mine everyday I struggle with chronic pain, it is depressing and makes every task in life so hard that sometimes I dont think I can make it. But then the day is over I get some rest and things look better in the am hopefully. So I guess I am saying thanks and hope we can both get through this difficult painful time.
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C5-C6 tear/buldge
C6-C7 ACDF
T1 - T5 neuroforaminal, lesions, facet arthropathy
Disectomy L5/S1
Anxiety
PTSD
Chronic Pain

 
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Old 12-10-2012, 02:48 AM   #29
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Talking Re: How Do You Deal with the Negativity?

I swear I am not usually the type to disappear from these boards for months on end.. Many life changes later, it feels good to be back. I just ready our replies to me from July and cannot tell you how much your support means to me- but I would like to try.
My entire life I have thought of all of re things I cannot wait to share with my children one day. When's disease onset and correlated circumstances hit 8.5 years ago, I felt like this dream of sharing my life with children was over.

Your kind words and the support off many people on these boards has given me hope that someday (hopefully soon/soonish), I can still fulfill many of the dreams I held dear before this challenge began.

Thank you for your compassion. Thank you for the hope. They are priceless to me.

 
Old 01-15-2013, 01:56 AM   #30
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Re: How Do You Deal with the Negativity?

I held out for as long as I could, I worked, I went to school etc etc and now it's all blown to pieces. I am trying to get used to this 'sit like a bump on a log' as my dad used to say. Some days I'm ok with it or am distracted enough to not notice that I'm just a bump. SSI doesn't pay enough to give even a weekend getaway so I get to stare at the same walls every single day. Soon there will be the wheelchair and even the being able to walk to the car with my cane will be gone. I miss so much of what I used to be able to do. I'm working with a therapist to help reconfigure my life so that it is more worth living. I'm so tired of ppl expecting me to already have accepted this lot. The whole permanent vacation thing sucks in the ultimate, but you can't convince them otherwise. Some vacation when it's the same walls you saw yesterday and last year I'm supposed to be happy about it? I am now trying to get more involved in life and the community around me. I'm not quite old enough to be a senior but that doesn't mean I can't come in and spend some time listening and playing cards with them. It is actually really good for both them and myself.
I'm just having to rewrite my book on what I think productive is, what I think is worthwhile.
Maybe I'll learn to play bridge... I live right across the street from a bridge club.
Sorry this is rambling and coming out odd...my PM just changed my meds a bit so still in the 'is this gonna work and not make me beyond loopy?' stage.

 
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