Coping?
 

Hello all. Well it has been brought up to me that I'm not "coping" very well with life,choices,pain,and my moods. I will be the first to say I agree. This is not just now but in the past. I'm 29 and up till last year was deep in an eating disorder which is a huge flag of not coping. I ran from life and never commited to things. I stopped and started school,jobs,hobbies,etc. Now with the severe pain and unknown still of other dx I sit in fear and anxiety. I never know what to do and my moods are so manic. I'm frustrated with my docs just shoving me to the next or never calling back. The lack of adequate pain control and how my body doesn't respond to meds. Before this I had been on a dozen different anti depressents without any help. Now with my pain level I can never decide on docs,treatment,my outlook is negative,and I sit in anxiety with the fear of it going back to the way it was. I tried the move to ca and am not sure cause I feel so lonely and scared and mean being away from my mom. I also don't know how the weather truly effects because my syptoms are so up and down. I do feel though my pain is higher when rains and cold days my feet loose circulation.With more of an ache.Even in the morning here when cooler I feel less good but I don't know if is truly cause of the cool. I think staying in all winter would not be good too but being lonely is hard. I just wonder how others deal with the fear,anxieties,depression. I have been in therapy 12 years and still suck at the coping. I will say I am pushing more and up to 15 minute walks. Woo Hoo and can even go through big stores like Target A far cry from the 23 hours of bed time but my pain is still high and the fear of it going back is super high.Thank you and to all you guys who fight for so long your so strong in my eyes. Your my role models. I see all your faces on my painful walks.

Just a word here
 

Daniella,
I'm so very proud of what you have done so far. Just the move was mind boggling to me. I can't even imagine moving in such pain. The winter will probably be easier on you in the sunshine state. Dark lonely winters are a killer as far as depression.

I hope you are able to find a group who you can share some interests with. Maybe a support group or even a coffee group. Book Review clubs are good places to occupy your time too.

Keep it up, you have such courage.

Billye

Hi Daniella:

Kudos to you for having the guts to make a change.
Depression sucks big time And what you have is depression, be keenly aware of this. That's why you've had the eating disorder.

So take your meds, go for as many walks as you can, breathe in the fresh air, and hopefully, as you get oxygen to your cells, you will move your body and everything will start to be in sync.

I only wish my late friend (who died last week), had taken the steps you have taken.

I wish you well.

You will achieve your goals. I have faith in you. Change is very hard. We are creatures of habit and habits are extremely hard to change.

YOu can do it!!!

Melody

Daniella? Whooo HOOO?!!!!!!!!!!!!!!
 

The first time I was able to walk thru a target store w/o the electric cart was well, better than a pony under the X-mas tree! That you can do it..and get it all done well THAT is a LOT of progress! Go for it good person..keep it up and you will get better..tho sloly and surely but YOU WILL GET there! - j

Daniella, normal walking can be really hard with this PN thing, i used to avoid it as much as i could when PN struck, but i use to love walking before so i thought of just going around to my local pool [all weather pool] and just walk up and down the lanes at your own pace, plenty people do it for all sorts of med problems, i found it best to get there real early in the morning before the swimmers come though, great cardio excercise, good for blood circulation and its non weight bearing so your feet shouldn't hurt you like walking on normal hard surfaces, i made some friends there, the social thing is an extra benefit as well.
I wish you well too
Brian :)

Thank you all. You cheered me up. Change I hate that is true. I think though for so long my life sucked cause I looked for the easy way out and with the pain there is no easy way out.The move was a hard and I feel I still have the aftermath. I felt like I was back at the torture of the cleveland pain clinic program. You have to keep going to docs,tests,and treatments. I think I have so much fear like probably many of you. I have a hard time staying in the moment. I think when I get more pain control and I am going to see another pain doc cause the one I saw here was I felt not good so onto the other. I do have a reumo apt cause my other leg is getting so bad and my other weird out of it symptoms. I'm going to ask this pain doc for an order for pool therapy as well. I agree I need to get into more social. I feel in a way ashamed of my pain and what it has done to me. I have more friends in Ca then home but only a little have I reached out but I think its time for more. I'm going to meet with my old therapist from here next week and set up some support. I just need to get my pain better managed so I can do more. I want to be young again with "stupid" worries that seem big. If that makes sense. Thank you and your all amazing

I think a lot of us have trouble coping with the pain and uncertainity of our health problems. Perhaps the person who is pointing this out has never had to deal with severe, chronic, unrelenting pain.

I know you told me that the university pain management clinic did not treat people who were also depressed (and anxious?) and I imagine there are plenty of people on this forum, myself included who are pretty anxious a lot of the time-maybe depressed too. With constant pain, it is difficult to look away, laugh, and just blow it off... I could be wrong here, but I find it hard to understand how the university can take this position... Most people who go to a pain management clinic are not exactly cases where an aspirin will give relief...

You are doing a good job of trying to get yourself in a position where you can have a normal life again.

Keep up the good work!

Cathie

A pain clinic that does not treat people who are depressed and/or anxious...... Anyone with chronic pain problems severe enough to seek out a pain clinic would have to be brain dead not to be depressed and anxious. Go figure.

Daniella,
I am proud you are my friend and proud of how far you have come. It's not easy for any of us with this rotten pain. Other's don't understand it so it makes life difficult for us who have it.
I know it's so hard for you to get around but I also know you are trying and that's what's important.....it's baby steps......and one foot at a time.
I hope you are able to find a good dr. who will help you get the pain under control.
Just hang in there.....it'll happen soon!

I think a reason I'm hesitant if I went back about that pain clinic is and forgive me if I told you guys this but when I was at the Cleveland Clinic pain program which is a lot about mental the psych said that this pain issue is similar to my ed issue in the past about being a victim. It really upsetted me and I said that this was different. I can't will myself to be better like the ed. I can't fix the pain like the ed but he said its similar. Will see I have a pain clinic apt here that does not have a psych eval in a week and a half so maybe this doc will help my pain. I do feel my mental outlook if not in constant pain and new things happening always with symptoms would be better. I'm very wishy washy. One minute want to be in MI another in CA. A lot does go with the levels of symptoms and also that I miss my mom. I feel real mean to leaving. I will also say through this I'm still in recovery though symptoms are better from severe eating disorder,ocd,anxiety,depression. There was a time in my life I would wash my hands till they bled for ex or was so underweight my hair fell out and that is not a part of my life but still its like any addiction recovery you have to fight and that takes a mentl toll so of course between working through these issues and the pain I'm not going to be all happy go lucky. Just trying to be rational and calm. Thanks guys you always give me hope.

We can only hope that the psych who implied that your pain was a psych problem will someday be inflicted with a pain disorder..... Surely ther is a special place in hell for doctors who dismiss pain symptoms in this manner.

Daniella, I believe
 

that you are not only coping well, but far beyond well! You are learning your limits and at the same time pushing your own envelope out to a bigger shape! And you are being very adventurous in pushing it to a possible move even... Far more adventurous than me in reality...so keep it up.

As for pain clinics? That first one being 'wary' of folks who have emotional issues sounds short-sighted to me. Why because their track record of claimed 'success rates' eliminates the very people who need the help the most. That is undermining their fundamental mission statement as a non-profit...in my book...and all subsequent research and results will be faulted. I mean, who doesn't have 'emotional issues' with the pain we have? DUH?

Try another one? Worth a shot any how? You just might find a place that has a method or philosophy that works for you....each of these places have one, or many...it's like finding shoes that FIT tho...there are lots of variables for us with all our problems. I had found a PT place that was working for me, then they changed corporation mangagements and staff changed...wasn't as effective nor did it work so well. So on to a new search the next time I need it! [REALLY Hope I don't need?] Maybe the second or third try will be the 'charm'...we all need to keep up the hope that it can and DOES sometimes happen for the better.. There are some here, such as Brian and David who have and are succeeding...that they've not abandoned us is proof that some can recover AND care! - j

ps: Dakota is right - if that psych had a week with what we have to deal with -would be a total basket case for sure! We are stronger, better and smarter by the following of our own instincts...We do not conform to a model, because our disease/condition doesn't seem to! Therefore we have no choice but to be 'unconventional' in our own thinkings.

I am beginning to think a lot less of some of these pain clinics. One small clinic we have here is nothing at all like this. The clinic has a very kind sympathetic doc who does not play mind games with people... He just tries to find a way to help people... Sometimes, it takes one med, sometimes it may take a combination, but he just keeps on trying hoping to find something that works.

I am sure there may be some people he has not been able to help, but I have never heard anyone say he implies that it is in your mind, or that you have control over it or anything like that...

Perhaps the big universities are not always the way to go... I stumbled on this one by accident through a friend...

Cathie

Thanks again guys. I agree about the people on this forum are such great inspiration of hope. I will say many psychs and I know there are some good but many have issues of there own that are more then just the normal problems. When I went ip for mental issues many of the therapists were recovered addicts,etc. You think they would have more compassion. I think your right that you have to keep fighting through to more places for help. I wonder how you all deal with the unknown? Everyday since my symptoms like others have spread or go up and down so much I fear what will be next. Its so scary and makes me so confused on choices. Its so lonely being like this.

You need a hug.

:hug:

Thanks. Many hugs to you too. I'm so confused and that meant a lot.

Maybe you need 2 hugs! Sometimes we are afraid too. Fear of the unknown is tough, plus the energy you waste trying to get a doctor to take you seriously is exhausting. :hug: :hug:

Oops. I don't know if I did a hug or not... Never tried it before. Hang in there and get some extra rest... At your age, you should be priming yourself to put on your bikini, go to the beach and have a couple of those cute drinks with parasols in them... :)

Cathie

"""At your age, you should be priming yourself to put on your bikini, go to the beach and have a couple of those cute drinks with parasols in them...""

And with guys, Cathie. Don't forget the cute guys!!!!

Daniella, I can see you on a beach with a cutie pie.
Throwing sand in his underwear!!!!!

Hey, you never know!!!

mel

Hey no drinks with meds. You guys are so cute. Thanks for the lifter. I hope one day to be able to do care free things like that. I do have a cute bikini. I'm not a big swim suit fan but what the hell if I'm fixed anything goes. I can hope right. I won't be doing any dangerous jet sking though. You guys could come visit and party. You know I'm a worrier its my job which I hate. This of course is scary but I always can find something to stress on. I hate it and its eaiser said then done to not. On the doc note too I agree and they often make mistakes so that makes the worry of course worse. By the way did you watch 20/20 it was about insurance and docs how they treat and charge patients. Also how it takes forever to get mri or how some insurance won't pay. It was interesting. I know with my ed most has been out of pocket cause insurance would not help. These place too take advantage cause the centers cosy around 1500 a day and most you spend month or more. My friend stayed at one for 8 months. They gave her a dicount but still. Some peoples insurance does cover but still many don't just like here how some people have certain coverage but don't on other. Ok enough of my rant. Thanks

Nope. Missed the show, wish I had seen it...

Meanwhile, go to the beach, check out the guys, but watch out for sand crabs... :) :) :) Really... Once I came home from the beach after a long day of baking in the sun. Taking a shower, there was something, aah, bothering me on the back side... As I stood on the edge of the tub to take a look, uh oh, there was a CRAB attached and it WOULD NOT get off...

Anyway, it's long gone now... The moral of the story is you have to watch your backside, even on the beach... Maybe that will lighten your day... :) :)
Cathie

I haven't been to the beach in over 40 years. I can only imagine coming home from the beach, taking a shower and finding a crab biting me on my "you know what".

I think I would have died. No, I KNOW I would have died.

Imagine screaming in the bathroom naked in the shower and your parents have to come in???

My god.

mel

LMAO!!!! Mel I'm with you.....I'd be screaming and dying of embarrassment if I had to get help to remove that thing! LOL LOL
Ok, that lightened my day! LOL Thanks Cathie!

Poor yorkiemom how did it come off? Melody I think I see a vacation in your future. 40 years thats too long. Maybe if your husband is well enough you guys could have a 2nd honey moon. I will keep my eye on the critters. I already always get sunburn regardless of sunscreen. I miss a spot and I look like a lobster.

Hi Daniella:

I think I shall call you Dannie. You sound like a Dannie. As for me and Alan taking a vacation, well, we haven't had one of those in almost 20 years.

That's correct. Haven't gone anyplace in all that time. Spent most of my life raising a son who has left us so now it's just me and hubby.

But we have each other and thankfully, we have our Dunkin Donuts in the morning.

And guess what we found out this morning?? We are entitled to a Senior Citizens Discount.

I marched in, announced I was born in 1947 and I want a senior citizen's discount. Everybody laughed and said "no problem"

So we saved almost $1.50 off of breakfast. Alan was thrilled.

But I would certainly love to go on vacation someday. I've been to Disney World so many times, I can't count but that was when my son was a kid and my parents lived in Florida.

Maybe Tahiti, or no, better than that. The Sahara Desert. Why the Sahara Desert?? Because for the past two days, I have been laid up with sciatica that happened because the temperature dropped 20 degrees in one day. I 'm always dead when that happens.

I was crooked all day yesterday and I started to straighten up today.

Hopefully tomorrow will be better. I don't take anything for it. Never works anyway. I did cave in and take two aspirins today. That's about as far as I go on pain meds.

I'd rather go to the bathroom, then take anything with an opiate. I can get them, but I won't. I just use warm compresses and move around. Moving is hard when you are spasming all over the place, but I do it and it helps.

Hey, I'm 60 in two months. I'm not Pamela Anderson any more!!!!

(Not that I ever was). lol
Mel

I turned the shower on it as hot as I could stand it, while screaming my guts out, and it finally let go... I mean, how would you call up a friend and ask them to come and get a "crab" off of you... Especially there???

Cathie