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Judgmental Family Members

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Chronic Pain
How do you deal with friends/family judgments?
Combative/Constant arguments - 9.5% - 2 votes
We agree to disagree - 9.5% - 2 votes
Passive aggressive remarks - 14.3% - 3 votes
Rarely discuss/change the subject - 42.9% - 9 votes
No issues - 14.3% - 3 votes
Other? - 9.5% - 2 votes
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mthixton
Regular Member
Joined : Jun 2013
Posts : 257
Posted 8/6/2013 10:03 AM (GMT -6)
Oh snooki,

We really are in the same boat. My mom hasn't asked how I am holding up/feeling ect in a long time (since I was a kid with the chicken pox at 9). She keeps saying don't take your meds you don't need them, so do physical therapy you'll be fine/get better and won't need surgery. It doesn't matter to her that my disc is gone my end plates are fractured and remodeling. That apparently is fixable by physical therapy. -coughs- our family gives us the hardest/most painful times because they are supposed to be the closest people to us since they have been there the longest.

Morgan
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Merrida
Forum Moderator
Joined : Jul 2013
Posts : 4771
Posted 8/6/2013 2:58 PM (GMT -6)
Ha! Got that one. I had therapy today and this EXACT subject came up. I told my therapist I called her today because it's her Birthday, I call on Christmas, she sends me a Birthday card. That's "mostly" the extent of our contact, and when we are in contact, I'm miserable, I get grouchy, I turn mean and unlikeable.

My therapist asked me: Why do you stay in touch with her?
I said: She's my Mother. It's what you do. I love her, but I just don't like her.

And just like you, absolutely everyone in my family notices a difference in me when I do spend time with, and without, my Mother. Just like you, that away time equals a happier, healthier, less cynical, and especially, way less defensive me!

I told my therapist I couldn't "cut the umbilical cord" because she gave birth to me,....she's my "Birth Mother," but I view my Mother in Law as more of my "Mom."

Oooooh, deja vu!

Sookie

Sookie
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White Beard
Forum Moderator
Joined : Feb 2009
Posts : 3740
Posted 8/6/2013 4:30 PM (GMT -6)
You know I have sat here and read everyone's posts on this thread and some I have went back and reread several times. For the most part, many of us have all had the same experiences with family and friends concerning our chronic pain. It is truly unfortunate, and many of you, especially some of you younger ones my heart really goes out to you. Pain is such a subjective thing, no one, can feel, (I mean truly feel) what another persons pain is, but yet so many are so quick to judge ones that have and suffer from chronic pain! Mothers, fathers, brothers, sisters, sons and daughters, husbands, and wives, are usually the first and most critical ones, of persons suffering from chronic pain. The very ones that we are most likely to go to first, to confide in, and seek comfort, and support from. But yet many of us do not find it there with them, but rather we come here, to this forum, where though we are really strangers to one another, we find, kindness, compassion, and support, nonjudgemental understanding, that flesh an blood can not give us! Kind of sad isn't it? But yet so Thank full for everyone here on this forum!!!.

Yes over time one learns quickly to keep ones pain and its affects on you to yourself. If your spouse does not understand what your experiencing or for what ever reason does not want to understand, it can be devastating to the marriage. It can distance family members and friends. I think above all, ( I might be wrong, but I do seem to sense it, in most of these posts ) the resentment that the pain sufferer feels towards the the treatment they receive from their loved ones. It is understandable, but please (especially you younger folks) do not let this resentment eat at you and harden your heart. Your pain takes enough of a toll on you, please do not let this add to
it!!

May Peace be with you all.

White Beard
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momtofourangels
Veteran Member
Joined : Apr 2010
Posts : 2265
Posted 8/6/2013 4:51 PM (GMT -6)
This thread really saddens me. That so many of you get judged by your own flesh and blood. It breaks my heart.

As far as my family, they live in Tennessee and we live in New York. I call my mama, and we talk about how she's doing and how I'm doing. We have chronic pain as common ground, unfortunately. She fell at a restaurant that she worked at, and hurt her back, therefore causing arthritis, etc. She also has had pain in her feet for years of working on concrete in the restaurant. about a year ago, a lady hit her car, and she got whiplash, and now has pain in her neck, so she knows what it's like. I would give anything if she didn't know what it's like.

Even before when she just had pain in her feet, she never judged me for being in pain, or the meds I take. I've always had a wonderful relationship with her. My father is a completely different story. He always verbally abused me from as early as I can remember. I never discussed my pain or meds with him, because I knew better. There's no telling what he would have said.

love and hugs
Loretta
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DianeB
Veteran Member
Joined : May 2013
Posts : 1355
Posted 8/6/2013 7:58 PM (GMT -6)
Wow

This has been subject of several other threads -
& rightly so

I am 'on' this forum for many reasons but mostly for the understanding that 'well meaning' family & friends cannot provide.

Distance made for the best relationship w/my mom but now that she is gone, my pain has shown me the bravery that she had.. she raised a family + outside work while in almost life-long pain from carpel tunnel, arthritis, ddd, post-polio pain etc..

I believe she would have understood my pain because of her personal experience. It's these young whippersnappers in my family that give me grief. So I too choose to no longer confide in them. You'll here & a couple of close friends help me immensely..

Thank you for listening; for sharing; for believing.
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MrJNT
Regular Member
Joined : Jul 2013
Posts : 357
Posted 8/6/2013 8:23 PM (GMT -6)

DianeB said...


It's these young whippersnappers in my family that give me grief. So I too choose to no longer confide in them.

I guess it's the media/outside voices that are spreading the idea that opiods are ALWAYS bad NO MATTER what.

That they are only used by druggies. That using them beyond the short term will lead DIRECTLY to long term addiction no matter what.

I mean...everywhere I go I see billboards saying, "Don't let Rx pills take you away from your family...Call now 1800ADDICTION!"

I watched a documentary the other night about the crap going on down in Florida...how many are/were driving down to parts of florida(one part responsible for waaaay more than half of all oxycodone Rxs filed). The documentary interviewed several who had sons, daughters died from overdose(of course using them illegally). The parents then go into advocacy mode....advocating that those pills are nothing more than heroin in pill form and should be banned.

It's just a big mess all around as I do feel for those who have been victims of misuse...but...I dunno. Lost for words.
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Blessedx8
Veteran Member
Joined : Aug 2008
Posts : 3193
Posted 8/6/2013 8:29 PM (GMT -6)
I just voted "no issue".... I did have some years back. Now - I don't talk to anyone about anything. Period. That being said, I also have serious complicated medical issues that dominate over my CP.... but in no way would I allow someone to be passive aggressive to me. That's rude and hurtful.

I'm sorry to those of you experiencing certain things.... --Tina
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Mercy&Grace
Veteran Member
Joined : Jun 2013
Posts : 1876
Posted 8/6/2013 8:37 PM (GMT -6)
The media/outside voices also influence our doctors. Kids are one thing, they all think they know everything about everything. But how can doctors be indoctrinated so easily?
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MrJNT
Regular Member
Joined : Jul 2013
Posts : 357
Posted 8/6/2013 8:41 PM (GMT -6)
I'm a cynical 24(about to be 25) year old. I have little faith in anyone be "above" anything...Sadly, we are all human and no one, as far as I can tell, is immune to...I don't know what the word is..."judgement-ignorance?"
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25445
Posted 8/6/2013 9:02 PM (GMT -6)
Josh, you may be only 24/25, but wise for your age. You are quite right in your analysis

Tina - glad to see someone else vote "no issues", was hoping there would be many more

david
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White Beard
Forum Moderator
Joined : Feb 2009
Posts : 3740
Posted 8/6/2013 10:38 PM (GMT -6)
These polls are alright I guess, but I rarely vote in them, however I do like reading the peoples post on the subjects and also writing down my feelings about the topic. As DianeB said this topic has been written about at least a few times before, and I am sure it will continue to be a hot subject in the future. And also as Diane said ""rightly so!!"'  It is an important topic and unfortunately we have all have personal experiences with it.

White Beard

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nvrthesame98
Veteran Member
Joined : Jun 2008
Posts : 6706
Posted 8/7/2013 2:51 AM (GMT -6)
Sadly Florida is full of judgemental people. The adds you all are referring to have taken the place of the "pain clinics " ads. They're on busses, billboards, magazines, the newspaper, and countless radio and local television and cable networks. Even saw a huge poster of the biggest treatment facility here that was used by the "Intervention " folks in the hospital vending room.

They all contain older, middle age women, usually caring for children, looking sick and stressed, stating that prescription drug dependance is a real problem with real medical answers. Goes onto say that help is discreet and no need for daily visits?

This told me 2 things, they're referring to the methadone clinic, versus subutex. If they're targeting our kids in these ads and trying to convince them that getting addicted to legitimate meds is a legitimate problem then it's no wonder our families think like they do.
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DianeB
Veteran Member
Joined : May 2013
Posts : 1355
Posted 8/7/2013 5:56 AM (GMT -6)
May be subject for new thread..?

Is there a way for us to 'stand up' -maybe singly, maybe collectively - for our rights to have a better quality of life thru ' modern chemistry'
As a fellow CPer has said (ie use of prescription pain meds & other treatments)

Seems to be no way to convince others, most especially family & friends, that 1. We are in pain
&
2. These things do (sometimes) provide relief

So many conditions are invisible..
Especially some in early stages

How do we counter billboards that do not acknowledge our rights?

I, for one, do not have terminal disease (except the one called 'life') & am very very apprehensive about the uncaring coming between me & my PM !!
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Merrida
Forum Moderator
Joined : Jul 2013
Posts : 4771
Posted 8/7/2013 12:35 PM (GMT -6)
This gets so tricky because all too often, we have to bite our tongue and create new ways of relaying information because discussing pain management seems to default, often, to many doctors jumping to the conclusion we're drug seekers, even if we're not asking for drugs, we're asking for help and management.

Conclusions are jumped to so swiftly. So many of us have learned to just keep jumping through their hoops, repeatedly starting all over, over and over, with each doctor, trying to be patient, express our concerns for quality of life, that we want to remain active,....and find the wording to relay that we're not there to seek out some source of narcotics.

I've been prescribed numerous non-narcotic pain management meds, and happily agreed to try them all, and ended up in the hospital more than once due to reactions,...one being my face and throat and limbs were so swollen I looked like Bibendum!! I rely on exercise, and physical therapy, I enjoy acupuncture, I love working out and can't wait to do it again properly, I use assisting devices for ambulation and sitting, braces for support,...so it isn't like I'm "seeking" any drug by name in particular.... But yes, I am seeking management. I'm seeking care. I'm seeking to be taken seriously and believed and not be put on the defensive.

I don't have any answers because this is one very tricky topic with heavy handed opponents who are merely uneducated.

Sookie
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tidalmouse
Veteran Member
Joined : May 2013
Posts : 1130
Posted 8/7/2013 1:04 PM (GMT -6)
Hey Josh.I'm in AL also.I don't discuss my treatment with my family.I never bring it up.Someone will ask how my knee is on occasion.It's nobody's business what prescriptions I take.I take 11 pills every day.As long as I'm taking my medicine the way I'm supposed to then it's not anyone's concern but my own.

The 1st Pain Management Clinic I was in 10 years ago,I was so happy I told a couple of people.I started get phone calls from people I hadn't talked to in years begging me for medication.I learned from that.

I've also learned that it doesn't really matter what anyone thinks of me unless I let it bother me.I'm who I am.I try to do the right thing every day.That's all I can do.My friends and family can accept this or not.I'm going to feel the same regardless.

Here's hoping everyone has a great day,
Rick
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care???
Regular Member
Joined : May 2013
Posts : 148
Posted 8/7/2013 3:44 PM (GMT -6)
 First, I'm in central North Carolina and one of the few joys I have left is cooking. I make a mean BBQ!

 I am also in the small but lucky group. I have a husband, 3 children,2 grandchildren, 5 sisters, 1 brother and 40 other neices,nephews etc! My husnands side is not quite as big, but not small.

 I have gotten nothing but concern and support. I know how blessed I am!

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mthixton
Regular Member
Joined : Jun 2013
Posts : 257
Posted 8/7/2013 5:09 PM (GMT -6)
I would be willing to drive to NC. It's about a 5 hour drive to NC. I am a mean baker I do cakes cookies ect.
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DianeB
Veteran Member
Joined : May 2013
Posts : 1355
Posted 8/7/2013 5:31 PM (GMT -6)
Care..

You are indeed blessed.!!

Do not get down your way often any more
but mmm your mention of bbq reminds me of some real good Weekends. .

I like mine with hushpuppies ; •D

Post Edited (DianeB) : 8/8/2013 7:21:57 AM (GMT-6)

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Merrida
Forum Moderator
Joined : Jul 2013
Posts : 4771
Posted 8/7/2013 6:15 PM (GMT -6)
Dang, makes me wish I lived closer to NC.

One of my closest friends lived in NC, a big support to me because he had MS yet "beat the odds" and became a paramedic, a teacher, personal trainer, and fellow competing body builder...that was our bond. Thumbing our noses up at the medical profession when they tell us "you'll never be able to....."

I miss him dearly.

Sookie



PS: Now I'm craving hushpuppies. Way to go..... ;-)
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squidley
Regular Member
Joined : Mar 2013
Posts : 67
Posted 8/7/2013 7:44 PM (GMT -6)
at a recent family get together I had a auntie who asked how I was going . I said I have my good days and bad days and made the fatal mistake of telling her I was on norspan patches 'butrans' she had never heard of them so I explained how they work .all I got back was so now your a druggie 24/7 with them on .

would not have a bar that they actually help me function along with my other meds she knows all ive been thru over the yrs with my accident and all my surgery's and is of the view well if you have had a operation then the pain should be gone and you don't need meds .

so I threw it right back at her I said your on blood pressure tablets are you not she replied yes I said what happens if you stop taking them she replies well I could have another heart attack and I said but you have had a operation didn't you . a stent put in place if I recall she replied yes but by this time she was wising up where this was going lol . so I said you should not need tablets cause they fixed the problem with the operation ...but that's different she said pain wont kill ya lol I said you have no idea and I tell ya what you stop taking your heart tablets and I will take off my patch.

but my DR says I need my tablets and I said BINGO my DR says I need my pain meds and I said I don't like been called a druggie either I don't get my meds from some dealer on the street I get them from the same chemist you get your tablets from so we use the same dealer lol .

by this time she was getting annoyed cause everything she threw at me I had a answer for in the end I said your no different from me we both need our meds to survive and live life as normal as we can .

I get the feeling i wont be getting a Christmas card from her this yr lol

Post Edited (squidley) : 8/7/2013 7:49:12 PM (GMT-6)

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Mercy&Grace
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Joined : Jun 2013
Posts : 1876
Posted 8/7/2013 8:01 PM (GMT -6)
squidley,

That is a very effective way of dealing with judgemental family as well as friends. I've done it a few times and the topic never comes up again with that person.

One of the many damaging things that has come out of the "war on drugs" and the attempt to educate the general public is that if someone sees a news story they think they are an expert. Know what I mean ?
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Merrida
Forum Moderator
Joined : Jul 2013
Posts : 4771
Posted 8/7/2013 8:11 PM (GMT -6)
I have to learn better ways to deal. It's my nature to share and believe when a family member or friend asks me how I am, that, silly me, I believe they really want to know. No. They just want to hear, "fine thank you, and how are you?" so they can spill their woes on us.

Sometimes I get it, sometimes I don't. But I have to come up with wording and phrases to come back with when I get asked about my meds. It astonishes me that I don't get asked how I am feeling or doing, how is PT coming along, how do you feel about your move to NH,...? NO. I get asked what drugs I'm on.

I also am consistent about referring to them as medication in company of anybody except my family, MY family, at home. And working harder not to ever name anything by name, even if it's one of my HBP meds.

My Sister in Law who works in a Pain Clinic (with rigid beliefs that NO ONE should need pain medication, ever), tells me that when a patient tells them they "can't" do something, to them what that really means is they "won't" do something.

She just got a promotion.

Even her 8 months of agony after a microdiscectomy didn't seem to budge her stance (even though she did take pain meds from her surgeon and somehow that was okay then).

I hate that comment: If you had surgery, it means you're fixed, shouldn't be in pain.

Yeah, ....no. Doesn't work that way.

Sookie
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squidley
Regular Member
Joined : Mar 2013
Posts : 67
Posted 8/7/2013 8:40 PM (GMT -6)
it gets tiring trying to explain to people and I usually don't get drawn into going into detail's anymore but I got sucked in by my aunt this time round .

Sookie you would think your sister in law would have more compassion esp working in a pain clinic im sure she see's her fair share of fakers and drug seekers but she would also see people in severe pain I think she might be in the wrong field of medicine to be honest .

not sure how pain clinics work over there but here there dam hard to get into and you usually only get referred into one after you GP has exhausted all means to treat you with what he or she is allowed to prescribe . my GP is fantastic in trying things and I believe he has my best interest at heart but we are almost at the point where he will be referring me to a pain clinic soon .

as I have my own private health insurance I would only have to wait weeks for a appointment without it you go on the public list and could wait yrs to be seen sad but true im afraid .

I have had friends go thru pain clinics some it worked great for others not so good im hoping they will find a combination of drugs that will work as I have a couple of different types of pain I have a lot of nerve pain in my lower legs as well as lower back and neck pain .here the pain clinic can prescribe drugs our normal GP cant until the pain clinics work out a pain management plan then he is givin the authority to prescribe what they recommend .I think you go back to pain clinic every 12 months or so for a review of treatment .....sorry gone a bit off topic ...it's disappointing tho when the people who know you best seem to be the ones that give you the most grief when really they should be the ones supporting you the most . im lucky my wife is very understanding and im blessed to have her :-) she also runs the medical library at our local hospital and is always doing research for dr's for different things so when articles about pain management come across her desk she brings them home to read .
ive even taken some to my DR lol for him to read he is amazed at some of the stuff I bring him and reckons im about clued up on pain management as he is so he dosent try too bluff me now cause he knows I always research what ever treatment he puts me on lol .....last visit he jokingly said he was sitting on the wrong side of the desk when I visit cause im just as clued up as he is .he finally fig out where I was getting my research on as he uses the hospital library and he say my mrs nametag and he put two and two together lol.

cheers dean aka squidley
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Teddtlove
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Joined : Jan 2013
Posts : 1038
Posted 8/8/2013 4:04 AM (GMT -6)
My family has done a 180 in the last 8 ish months. Most of my dx have come in the last 8 months. However there was a period of time I was vomiting up to 10 xs a day and having up to 20 BMs. My husband actually was mad at me that I could not go to work like that. He once went to work got sick once and came home. No one knew why I was sick and I had every test in the book but regularly I was told life was harder without my paycheck. I should be working. I wasn't that sick.

In Dec of 2012 I developed a UC flare. In late Jan early Feb I developed a severe pain. It landed me in the ER twice. Both times I got admitted for extended stays. Once three days one seven. Both times we were in the ER my husband was ticked at me for having to be there. He thought it was ridiculous. The second stay we fought the whole night while I was being evaluated. Of course where no one else could hear. Luckily the nurse thought I was crying because of the pain which was part of it but it was also the lack or support and him not believing how much it hurt.

When he found out it was something serious he started to change his mind. By the time they admitted me he was a different person. He had tickets to his favorite NBA team game that night. He missed it so he could stay in the hospital. Ever since then not one negative word if I need to miss work. When I got the UCTD dx he started offering to let me out at the door. Asking if I needed to rest. He has been amazing. I have begged him to tell me what changed. He says he can't that he just realized it wasn't worth fighting over.

Also his mom used to get upset when I missed work because we all live together. She has changed to. She still gets a little weird but has become much better about bitting her tongue.
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Merrida
Forum Moderator
Joined : Jul 2013
Posts : 4771
Posted 8/8/2013 7:05 AM (GMT -6)
Sherrie,

I can relate to your story immensely. But I was also responsible for that "pre-180" disposition. When I could no longer perform my duties for work, lost my job. My whole "identity" was wrapped around "the physical being" and anything relating to my body or others, blurred lines, but it's me, it's who I am. When I was initially out of work, we all thought, temporary, always had problems, blah, blah. Then things got worse and not only did I ignore it (because I beat the odds before, by golly,) but I sunk into a "funk" that lasted,...a long time. The loss of my income was a big pinch, still is, but boy did I hear about it. There was more concern over the loss of income than my health and well being. By everyone. Everyone.

He got sick of it, coming home to me being curled up on the couch, living medication time to medication time watching the clock, intractable pain, couldn't take care of myself or my family, lived on the couch, didn't go to bed in our own bed together. He was angry, yes, but also ignored me and got frustrated. He grew weary and our marriage was at risk of ending. I found this out in a peculiar way.

When I couldn't take it anymore, (as if sucking it up until you feel like you're going to die is noble or something? Rather than addressing things as they arise? Yuh-huh. Martyr.), I was extremely fortunate that the ortho surgeon I found is one of the best in the country and helped develop some of the hip implant devices and surgical techniques. God, or someone or something, was on my side.

He came with me to my first visit and if I reached over to just touch his leg, he flinched, and glared at me like it disgusted him to have me touch him. I can't describe the pain I felt from that. He came in with me, the surgeon rested his head on his hands and looked grim and turned to us and said, "You need a total hip replacement. Immediately. This is about as bad as I've ever seen."

(We're still on egg shells, bear with me).

I'm freaked out and feeling lonely enough I call my Mother (who I don't even speak to), in tears, scared,....and reach our to a friend I have who lives across the country who lose her leg due to a botched surgery that was initially for a tendon release,....she's been a savior and helped me put my life in perspective.

I go in for surgery, petrified. I come out and within 48 hours, even though I'm in pain, I'm happy. I haven't been happy in years. We both feel like that surgery removed something toxic in me that turned me into a different person. This is when he told me he drew the line in the sand that if I didn't go through with this surgery and rehab, he was leaving. That's a lot of trauma in one go.

I came out feeling better than I have in decades. He came to see me every day in Rehab (remember, he has a 2-3 hour commute each way, but still found the time), and he thanked my surgeon personally for returning me to him.

It became frustrating when I had the back surgery in December and then this new hip replacement in June,....he told me his missed me. I was always getting surgeries, and I wasn't there for him, and he wanted me there.

Now THAT was new.

He has been amazing ever since that first hip, we've never been stronger together, we're happy, there's virtually no tension, he just wants me to focus on getting better. He knows when I have funky days to leave me alone, but he always comes back, and so do I. And the funks go away, they don't last for years.

It can be right in front of their noses....I think for some people, they don't want to see us as sick or as invalids or not independent so it's easier for THEM to turn a blind eye than cope. Me? I eyeball when people aren't well and jump in like I'm on call. I don't have it in me to look the other way. (It drained me the one time I had to,...I mentioned it in another post).

It can be tough, but it's nice when people eventually get it.


Sookie

Once again I apologize Mods for writing a novel. I was just moved by Sherrie's post because it mirrored my own relationship, kind of hit a nerve so to speak.
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