Didn't I say I did make that hideous faux pas/gaffe? Well, y'know... noobs. Live & learn - sometimes the hard way.

We've got a couple of close friends who really do want to know, even when I don't want to remind myself by bringing it up!

My wife keeps urging me to write a book(let?) of nuggets of wisdom for painees & their loved ones. But who'd actually want to read something like that? When it was new to me, all I wanted to read was how to make it all go away! Had to go through a few stages of grief before being receptive to much, and by the time I was.... Besides, there are already a ton of blogs out there by painees that say pretty much the same kinds of things.

Doc

Don't have to imagine - BT-DT. In a couple of cases, it was the last I saw of those faces for quite a while. Looking back, and having been on both sides of that fence, I don't blame them at all (and I shoulda taken pictures ). There was a person in a live support group I was in for a while that we tried to strike up a friendship with, but they couldn't turn it off... ever, and that made any kind of socializing very difficult. We discussed it a few times, but it never stuck, and eventually we grew apart again. I'm always available for support, but I've found that for me, I've got to maintain some separation too.

Absolutely people actually do care, and it's not just "people" who feel helpless that they can't do anything for us; we scare the bejeebers out of our own doctors too. (And remember what I said about blogs in my above response?)
http://www.medpagetoday.com/Blogs/21266?

That's one of the things I really appreciate about my therapy dog. He's the one member of my support network who seems to know he can do something (lick the tears [and skin] off my face), and is there to do it, any time, day or night. He's also good feedback, because when I'm so bad off I cry out, he gets scared (thinks he hurt me) and runs for his crate.

Doc

"Absolutely people actually do care, and it's not just "people" who feel helpless that they can't do anything for us; we scare the bejeebers out of our own doctors too. (And remember what I said about blogs in my above response?)
http://www.medpagetoday.com/Blogs/21266?"

Well that blog put everything into perspective for me, brilliant everyone should take a few minutes to read it

That blog is awesome. I have a PCP and a neurologist who seem to understand their limitations. My PCP actually admits it outloud. He said 2 weeks ago that as far as they have come in 2011 understanding autoimmune disease they are still stupid when it comes to these diseases. He's awesome. I have jumped around quite a bit with neurologist and keep coming back to my original. I thought the bigger hospitals etc had to have someone more knowledge than a neuro from the suburbs. He even says try one of the bigger hospitals I'm just a small suburban doctor. Everything I learned everywhere else was the same things he said and tested for. I am staying with him now. I wish they were all like this. I had to make a decision that I have to trust someone.
Hopeful

I've had similar experiences, and I was aware of what Dr. Rob says in his blog before I came across it, but it was the first & only time I'd seen a doctor put it in writing, so naturally it's been a keeper. My former PCP just dumped me unceremoniously with a form letter that said, to the effect, "Our relationship is no longer therapeutic. You have 30 days to find another doctor." I think it may have been code for what the blog was saying; the guy was frustrated/uncomfortable, and I was learning more about my condition & treatment than he knew (not that it mattered to me). He wouldn't even take my calls for discussion/explanation. My wife & I did some fast but serious homework to find a new PCP, starting with a list of doctors provided by our insurance carrier, and using tips we found online. We found our current PCP, who has 20 yrs experience in pain management, but decided he needed a change for some of the reasons stated in the blog. He only had a slot for one new patient, but we talked him into taking us both as a package deal. He's been incredible. Candid, communicative, open-minded... almost more of a friend, though he maintains professional limits as he should. He's the foundation for the conventional medical portion of our support team, and we bounce a lot of ideas off of each other. He not only listens to my input, he takes notes! We've exchanged many articles via mail over the years (he seems to prefer snail mail & phone calls over email) and we do a lot by phone to save on office visits. Specialists have been added to the roster as we find those who make a good fit with the rest of the team. The only one I'm not exactly thrilled with is my neuro; he cut me loose because he pronounced me "idiopathic" and couldn't/wouldn't do anything for me (and as the blog says, "move on to a patient who [he] can fix, save, or impress"), but I keep emailing him when I find/do something that works. I'll probably replace him when I find a good one.

Once more, attached is a schematic of my support network (team).
© 2007 Used with Permission

Attached Thumbnails

 

I need to take this thread and turn it into a tiny IV that will flow continuously into my blood and into my heart; I need the reassurance that this page provides - I am not alone, we are kindred. Even when some of you write of pain and disappointment I feel better, because I feel the extension of myself in those words. I don't feel quite so lonely and isolated. What all of you have written has made me feel better, and I am going to keep writing here.

I have not been very successful in finding a therpist however. The ones I have found are too expensive - but they are ideal. It is monstrously devastating. I am hoping that by becoming a part of this network of supporters I will feel better and it will reflect on my dynamics of the relationship with my husband (and others as well), but how does he get help and we get help together? We live in a VERY isolated area, I can't drive due to my Ganglioneuritis, and we have no monetary resources and all the therapists I have found that have experience with chronic pain - do not take insurance..............

so can I spew here

I was struck down by my chronic pain at the height of my life; I was a go getter, do it now, gett'r'done gal. I worked at my children’s schools: preschool and elementary. Volunteering for every committee, in all their classes, volunteering for two horse riding clubs we belonged to(president of one), participating with a civic group my husband and I had pushed to startup. When someone needed something done they came to me, if there was a new committee to start up they called me, and if there was an open position they called me because I would be there! I was active, energetic, organized, involved, independent, helpful and got things done - happily. I was on the demanding side, probably controlling and pushy at times - but it was what I did and I did it good.

That is what is hardest for people to adjust to - they (nor myself) can't adjust to who I have become versus who I was. They honestly want to know how I am doing - because they can't reconcile the new (sedentary, dependant, helpless, angry, inactive) me with the old. So many people saw how I changed, and it hurts to try to push them off, when I know that at this point I don't think I am going to ever get better.

Because I have a condition that a "mystery illness" that further makes it hard for people to understand about whether or not its going to go away or not. They really do care and are as tired of it as I am - but then all we ever talk about when we get together is my condition - so that is what I have become - my condition. I know that is not what these people mean to do to me, they just want to help, they are concerned. I always try to highlight them on my most recent treatment and condition - but to tell the truth, I am often am just my condition. I don't do anything else. I can't do anything else. My pain and condition do not allow for anything other than to focus on my condition -sick twisted circle isn't it?!

The closer people ask and then we move on and talk of ther stuff, the closest like myself and my husband and others get all messed up in the pain and aggravation of it. We get all wound up and screw up our relationships’ - how do we fix that when I don't even know how we get there?


I look back at this and read it and honestly feel vomit at the back of throat -

HOW did this happen to me - I had it all right; a happy focused life, a decent marriage, 4 children, a home and now ALL of it is in misery and in jeopardy. We are in financial ruin because of my medical bills, my marriage is at the bottom, my children are miserable because my marriage is miserable, and I can't get off the couch.............................

i was feeling better, now i feel like *%#& again....

gonna go for a while.....


This thread is gold, your words are iridescent, your message is luminous, please keep the support flowing ...

You betcha kiddo. Do it here, and you may be able to save from doing it some less appropriate (for you) places.

You sound in many ways like my wife (and to a different extent, myself). She wound up just having to retire ahead of schedule (which left us short of prepared) because between her own health issues, job pressures, and being my primary caregiver, it was affecting her and us in some very negative ways. Things are tougher now in some ways, and better in others.

I still, after many years, have not fully reconciled giving up my business and the other creative and productive endeavors I was engaged in.

Yeah, that's what the person we tried to establish a friendship with was like.
That's what making a point to leave it alone for an evening, or a day, and do something "normal" for a few hours is about. It's not easy-peasy. It takes some analysis, rethinking, adjustment, behavioral modification, and just plain hard work, but you can do that. You are more than your condition; try to show/prove that to yourself and those around you. Ask your friends/co-workers specifically not to ask you about these things, and be open and tell them why; they'll understand and cooperate because it's something they can do to help you feel better about yourself (if not feel better physically). You're a teacher, so I know you know what attitude and cooperation can accomplish.

I'm wondering if your husband might not be feeling like some of the doctors described in that blog. He loves you and wants to make you better - he's your partner, lover, protector - and he feels powerless and ineffective, and perhaps guilty about that, and maybe it comes out in unpredictable ways. Possible?

These are things we are pretty much all going through. They are more than events. Catastrophic life-altering illness is a process - a journey - and in many ways it's very similar to, and involves, the stages of grief.
Google: stages of grief

The more you learn, the more you become aware of your condition(s), chronic pain, its politics, doctors & medicine, this journey & these stages of grief.... all this.... stuff - the better equipped you will become to adapt and survive and cope.

Doc

Thats the toughest part isnt it? acceptance.

I know I now accept because I have ditched my idea of buying a yacht to sail around Asia and am currently planning where to put grab handles in the bathroom/shower so I dont slip over on my numb feet :

Exiting the world down the track with advanced P/N was never in my grand plan. Oh well at least we can come here and talk without guilty about it


On the bright side who knows maybe they will find a drug that completely takes care of the pain its all I can really hope for.

Just read through this thread. It is so thought filled and brought to light the many aspects of dealing with chronic pain. We are so fortunate to have this type of forum, where we can come and get insight from others.

Donna

I do not know, Blaine, if this applies in your case, but I have had to have a very long, drawn out over days, discussion with my husband in order to clear up this issue. We have been married 29 years, and have been together since we were 17. We have 5 children, and his devotion is unquestionable, but we never seemed to discuss my condition. He took me to Johns Hopkins, sat in on all the consultations, picks up my meds, talks to the pharmacist about how much oxycodone is too much, (evidently about 6 times what I am using), etc. He would not mention it and avoided the topic though and I started to feel as if I must be complaining all the time for him to be so oblivious. I am not much of a complainer, my mother was a hypochondriac and I have a lot of hang- ups about having a chronic health condition, which make it really important for me to feel understood without having to ask for attention.

He started to see a psychologist for severe work related stress, close to a nervous breakdown this past summer, and it made him more thoughtful about what has been going on. He is, quite simply, terrified about my health.The progression, very slow from childhood, has really speeded up in the past four years. He can only deal with things by fixing them or ignoring them and he can't fix me. Suddenly one floor living and walk in showers with seats and grab bars aren't in the distant future. I walk with a cane and need his help to get up from a table in a restaurant, my legs are ridiculously long and cramp up from sitting in a small space. I cannot drive more than a few miles without cramping in my right leg and back, so need help to get some of the shopping done.

So we are having some communication issues and at the bottom of them is my inability to clearly state what is going on, and his fear of the fact that I am in fairly constant pain, losing strength, and likely to get worse.

We do not have financial pressures, which I am sure adds a whole extra layer of stress to an already difficult situation. We do have a lot of child related stress as three are grown, daughter is married and expecting a baby, and all are having trouble with jobs in this economy despite having college and graduate degrees. Also one very angst-ridden high school senior who doesn't want to go to college and a special needs 12 year old, scheduled for yet another surgery this winter.