Judgmental Family Members

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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Crushed right meniscus, psvt tachycardia, ventricular tachycardia, L4-L5 bulging disc with tearing, pinched sciatic nerve left and right. L5-S1 disc gone bone remodeling with bone spur pressing on spinal cord. [Recommended spinal fusion] Modic type 2.

BACLOFEN, DICLOFENAC, PERCOCET, GABAPENTIN

If pain is weakness leaving the body then I must be a strong woman by now.

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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Moderator Chronic Pain
I retired from the USAF, in Sept, 1991. I went back to school and became a licensed RN in 1994, I worked on Oncology and Med Surg , I became disabled in late 1999 and was approved SSD in early 2002! Diagnosed with: DDD, herniated Disk at T12, L3/4; C3/4 Posterior Articular Joint fusion Nov 2010; C5/6 ACDF Sep 2009; C6/7 ACDF Mar 1985; Ulcerative colitis; Chronic Pain; Complex Sleep Apnea; and host of other things! I am White Beard with a White Beard!

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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Diane

Herniated cervical discs & other assorted disc / spine issues, Arthritis
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis

Fentanyl, oxocodone & muscle relaxers - 1,000 Vit D & multiple daily vit

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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Moderator - Chronic Pain Forum

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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Je t'adore

Josh from Alabama.

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

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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Diane

Herniated cervical discs & other assorted disc / spine issues, Arthritis
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis

Fentanyl, oxocodone & muscle relaxers - 1,000 Vit D & multiple daily vit

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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52 yr old male.Disabled since 2009.Arthritic Rt knee.Scoped x2,knee replacement in near future.5 bulging discs,spinal stenosis.Pain Management Pt.Current meds-Nucynta ER 150 x2,xanax 1 mg x3,Zanaflex as needed,Mobic,Celexa,2 blood pressure meds.

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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Crushed right meniscus, psvt tachycardia, ventricular tachycardia, L4-L5 bulging disc with tearing, pinched sciatic nerve left and right. L5-S1 disc gone bone remodeling with bone spur pressing on spinal cord. [Recommended spinal fusion] Modic type 2.

BACLOFEN, DICLOFENAC, PERCOCET, GABAPENTIN

If pain is weakness leaving the body then I must be a strong woman by now.

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..... ;-)

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 ?

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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motor bike accident 1977 almost severed lower left leg. multiple compound fractures . broken ankle /knee/shattered pelvis/spinal injuries/6 months in hosp 2 in a coma/3 yrs to learn how to walk again and over 30 operations since 1977.

meds past and present pethidene morphine. digesic & panidene forte currently on endep & tegredol for nerve damage pain and norspan patches 20 mg & digesic

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.