Need some shoulders - tired of people who don't understand

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PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/24/2008 2:16 PM (GMT -7)   
Dear HW Friends,
Once again I come here looking for shoulders to cry on. (please, please, I'm not lookint for solutions, just comfort)

I don't even have it in me to go into all the details. You've heard them before. You've lived them before - and continue to live them, just as i do.

It may seem like a small thing, and maybe it's just the straw that broke the camel's back for this day (many other straws on many other days, as you all know), but I got one of those forwarded e-mails from a distant relative who always forwards stuff. She "knows" my situation, although seems to conveniently forget it. The e-mail was something about work and frustration with one's boss, etc,, the typical thing people who are working "normal" jobs but have stress find funny. But for me - someone whose heart is breaking because it doesn't seem I'll ever be able to get my career back here in my late 50's - it was painful to read.

This woman I always respond to when she needs advice (about a career change she wants to make, about her daughter even though I don't have children), and then I get this stupid e-mail which just sent me crying. Especially on a week when my unemployment ran out. When my cousin just had to send me another check to pay my COBRA. And the job I applied for...well, it's been 3 weeks and no call for an interview, so...

So I wrote back to this insensitive relative. I finally got a little angry and told her please not to send me any of those forwarded e-mails anymore. And explained - once again - what my life was like. Well, she responds with this paragraph about how she knows people have it tough, but everyone needs a sense of humor. And other stuff along those lines.

I'm just tired today. Scared. And hurting and feeling so very, very alone. cry

I just need some comfort and understanding voices.

Thanks for listening.

PaLady sad

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 10/24/2008 3:40 PM (GMT -7)   
AAW PaLady, I am sooooooooo very sorry you are hurting today. I know how you feel. Right now I am retired and don't really want to work again, but I can remember a time when I was downsized right out of my position, collecting unemployment and waiting with baited breath every week to try to get a reply to jobs I had applied for. It is even harder with you and your restricitions, one of which you feel is your age. I am so so sorry you are in this fix. But that relative is simply insensitive. You got it off your chest and now you have to take care of you. Make a can of soup and a grilled cheese sandwich. Buy a birthday cake and have them put your name on it and celebrate YOU just because. Take a hot bath and read a trashy magazine or novel. Just do a few things that are decadent and feel better for a while. Go on, you deserve it , now go do it. And if you need me to talk to well you have my email honey. As a matter of fact I have an uplifting email I am going to send you right now, so look for it.

God bless you my friend and know that I care very much about you.

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 10/24/2008 5:00 PM (GMT -7)   

PaLady,

I'm an emotional wreck already today - for VERY similar reasons - and your post brought tears to my eyes. cry   My situation dealt with getting an e-mail from an "old" friend (maybe we should stay off our e-mails...); she and I used to teach classes for our kids, when life was different...just hearing how things are going for her (and as happy as I honestly am for her) reminded me of just how very limited I am. 

I wish I could offer you the wonderful ideas that Linda did (and I'm sure others will).  I just wanted you to know, that even with different life circumstances, I can very much relate to the feelings you are going through.  I live with my husband (of 15 years) and six kids - and, yet, I too deal with feeling very much alone.  Honestly, I don't think it is possible to relate unless you have dealt with the severe limitations that we all have. 

I told my husband last night that I've figured out something about having a long-term chronic illness.  It is not human nature (for most) to deal with something like this for long-term.  95% of the people that were there for me the first two years of being ill - have gone on their way.  Not many of my friends and family could deal with the fact that I'm not the person of before - I can't go out , can't talk on the phone much, and what little energy I do have...I HAVE to give to my kids and husband.  VERY few people have stuck by me through all of this. 

Boy, I'm in an uplifting mood, I know - I'm sorry.  BUT, please know - we DO understand and are here for you.  I'm praying you can find a way to just try to take your mind off it and just find some type of relaxation for tonight.  To me, it's just about getting through each day right now.  I'll be thinking of you :)

--Tina


Boxerlover
Regular Member


Date Joined Dec 2006
Total Posts : 274
   Posted 10/24/2008 7:25 PM (GMT -7)   

PAlady, I can totally relate where you are coming from and I am sorry about your family member's insensitivity.  i am on disability and left my career kicking and screaming.  I have a very hard time dealing with this part of what I have lost to pain and illness.  Good for you for writing her back and telling her how you feel, but if there is one thing I have learned about this whole process is "normals" will never understand this road we are on unless they have to travel it.  And, I don' mean for a weekend trip, I mean everyday, all day for a very long time.  Until that happens we are wasting our energy trying and hoping to make them understand.  This is illustrated by her response to your reply.  Instead of apologizing and saying she sees where you are coming from, she makes a wise-crack about having a sense of humor.

I need reminded of this fact too as I go about assuming people understand my situation and limitations, but time and time again, they show me they have no idea.  I was watching something the other day(sorry I can't remember what it was, but it wasn't a movie or show, it was real people) and people didn't feel good and their lives came to a complete stop as they dealt with it.  It really effected their lives.  But they got better and off they went.  We don't get better, what they suffered for a limited time is what we go through all the time.  Even though they had a small taste of what we go through, they can't relate.

Oops, sorry to go off on a tangent, just wanted you to know I understand.

Melissa 


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 10/24/2008 7:26 PM (GMT -7)   
PAlady,

I'm really sorry to hear that you are hurting both emotionally and physically today -- sending you some long distance hugs and happy thoughts. Since I joined this site you have provided me with some excellent support and advice, which has really helped to get me through the last few weeks. Please know that you are not alone. We are all here for you.

I've also been having a really bad day, both emotionally & pain-wise. My PM appointment today didn't go so well. My doc acknowledged that my pain is basically ruining my life right now, but he didn't seem to have too many suggestions to offer, so I feel like I'm no better off than when I went in to the appointment. I also got word from my school today that they are allowing me to drop some of my classes due to my situation. Despite this being necessary, I'm horribly upset about it. I don't even know if I can get through the semester (even with the reduced load), let alone continue to pursue the career path that I have been working so hard for my entire life. So I can definitely sympathize with your bad day and fear about the future!

You'll be in my thoughts. Hang in there!

Skeye

Post Edited (skeye) : 10/24/2008 8:29:42 PM (GMT-6)


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 10/24/2008 8:11 PM (GMT -7)   
Awe PAlady... I got a shoulder for you to lean your head on and just release all those tears and furstrations or even just to hit if you need too.
My family just don't get it or have a clue as to what I'm going through either and they can be so darn insenitive,
it's a darn shame how applaudding rude they can be, that I feel pity for them.
So here take my shoulder and use it for however long you need it.
Many many prayers and concerns for you PAlady...
Lots of Soft Hugz for when your done with my shoulder.
and like Skeye said hang for us as we'll care for you....
Try www.monster.com for a job just a suggestion, you've probably already have so just ignore this then, my apologies...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

********>^..^<********>^..^<********>^..^<********


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 10/24/2008 9:13 PM (GMT -7)   

PAlady,

It's been a few hours since I posted you; and just wanted to let you know that you HAVE been in my thoughts.  I'm praying you had a better night tonight...

Sorry you've had a rough day, my dear smilewinkgrin Post when you can.

Tina

 


 

 

Diagnosed with: POTS/dysautonomia; Fibromyalgia; Severe Hypertension; Hypothyroidism; Adrenal Gland Disorder; Chronic Pain - severe carpal tunnel syndrome, migraines, severe back problems, widespread muscle/joint pain....as well as depression/anxiety.

 

Current Meds: 480mg MS Contin, 90mg MSIR, Soma, Effexor and MANY other meds (heart, thyroid, etc)

Past Meds: EVERYTHING.  Fentanyl patches, Actiq (which caused $$$ in dental work), Fentora, Oxycontin, Oxycodone, Kadian, Avinza, Dilaudid and on the list goes.

 

Waiting On: Intrathecal Drug Pump Implantation (Dilaudid/Baclofen combo)

 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/24/2008 9:56 PM (GMT -7)   
Oh, dear friends at HW, thank you SO MUCH! I'm tired right now and wished I had the energy to write a response to each one of you, but know that I read each of your words and placed them around me like the most nurturing of motherly arms.

Thank you for reminding me I'm not alone in this. It helps more than I can say.

Hugs to you all,
PaLady

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/25/2008 12:29 AM (GMT -7)   
Hello PaLady,

I have had this Intractible Chronic Pain for about 6 1/2 years now. I've lost
my friends, my job, my son, my painting, my writing, my home, my town
and now with the stock market as it is there may be much more to lose.

I don't say this as a competition but as a way to tell you that I REALLY
understand.

I had a sister-in-law who sent me a book by Dr. Serrano about 4 years ago. I glanced at
it and with thanks sent it back. A couple of months later she spoke by
phone about the wonders of this book and how it had cured fifteen or
fifty of her closest and dearest friends. I went right out and got it again. As
I was reading it, the words all blurred together and I felt like I was enclosed in
a glass brick or something ~ couldn't move. (Can't explain that one)
I didn't say anything to her at the time. It was there that I gave up trying
to have friends and be "normal" Of course I tossed the book out.

To end my story, I never spoke to her again because SHE DIED. She
got Cancer and her ending was not easy. As she left planet Earth she
did one last harm, she took my husband out of his Dad's will! My
husband didn't travel to be with his Dad because I was terribly dangerously
unstable at the time. (I can't say the totality of my condition outrigt because the word
is outlawed on our Forum, but you can guess)

Maybe you'll feel better tomorrow. You see how many people care and
UNDERSTAND.

Serrano's thesis is that we make our own pain and can cure it with happy thoughts
or something. If anyone agrees with him, I will not read your posts. Ever.

Tomorrow maybe we can think up some of the things that help us: The computer,
and books on tape occupy my mind.

Pamela

"If you're going through Hell, keep going." Winston Churchill

Post Edited (Pamela Neckpain) : 10/25/2008 1:41:35 AM (GMT-6)


kara487
Veteran Member


Date Joined Mar 2008
Total Posts : 637
   Posted 10/25/2008 3:53 AM (GMT -7)   
PA Lady,I am sorry for what you are going through you are in my prayers.
Lortab,ambien,elavil,reglan and neurontin.
 
spinal conditions: Scolosis,herniated discs,spinal blockage,Spinal stenosis,bursitis and arthritis


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 10/25/2008 10:44 AM (GMT -7)   

Pamela,

I understand your post very, very much - and I'm sorry.  I could have written much of it myself.  Many people would say that just to imply that they "care"; (and you know me, I do care, of course)...  But, reading between the lines as they say, I have experienced very similar loses and very similar situations.

I've received books of the very same nature.  Or things people have copied off the internet.  Mind over matter stuff.  OR, if I would just start "(fill in the blank)", I'd feel better.  I have other medical conditions on top of the chronic pain; I've had friends (?) give info on juicing, alternative-doctors, exercise (which actually puts me in bed), etc.  I know some of it was well-meaning.  BUT the "mind over matter" stuff IS trash.  I agree, that's where it needs to go.

My husband's family, who never embraced me anyway, thinks everything I have is in my mind.  This is despite all the tests, everything that has come back.  Nope, to them - I'm a drug addict and a mental case.  It's very hard trying to maintain a marriage with all that stuff in my husband's ear.  He says that he knows the truth and everything, but does he?  At his very core, does he really know how much I'm suffering and how bad things are?  I don't know. 

So much of our issues (pain & health stuff) involve grieving, don't they?  I don't know about you, but I feel like my old-self died.  I'm trying to find my place in this world with my "new self" and it's VERY difficult.  Especially when I am faced, everyday, with memories of how it used to be. 

Hope today is a better day for everyday. --Tina

 


 

 

Diagnosed with: POTS/dysautonomia; Fibromyalgia; Severe Hypertension; Hypothyroidism; Adrenal Gland Disorder; Chronic Pain - severe carpal tunnel syndrome, migraines, severe back problems, widespread muscle/joint pain....as well as depression/anxiety.

 

Current Meds: 480mg MS Contin, 90mg MSIR, Soma, Effexor and MANY other meds (heart, thyroid, etc)

Past Meds: EVERYTHING.  Fentanyl patches, Actiq (which caused $$$ in dental work), Fentora, Oxycontin, Oxycodone, Kadian, Avinza, Dilaudid and on the list goes.

 

Waiting On: Intrathecal Drug Pump Implantation (Dilaudid/Baclofen combo)

 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/25/2008 11:28 AM (GMT -7)   
Tina,
Your last paragraph sure said a mouthful, as the saying goes. I think part of it (at least for me, I should just speak for myself) is fighitng to get that old self back, when the reality is I can't. But I don't like that reality (does anyone?). Yet, I know in my head and my heart I can't move forward to even envision a "new self" until I allow the grieving its just do. I think this is a topic for a thread in itself.

The mind over matter stuff...well, I'll save that for another time. It's really not mind over matter, but it is mind AND matter. Mind is matter, really, but that doesn't mean our pain or anything is all in our heads. But it isn't trash - but I don't want to get into an argument or discussion on that here! I'm too tired and in need of support right now! I probably shouldn't have said anything, as it's not meant to hurt either Tina or Pamela.

I'm too tired to manage my own mind right now!

PaLady

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/25/2008 12:19 PM (GMT -7)   
Oh PAlady,

It is almost impossible for me to imagine your saying anything that would hurt me.
I kinda know what you're going through. It's similar to what most of us are going through.

It is possible that you know a different path. If so, share it! You have a license.

I personally have given up trying so hard. However, when I gave up, things
seemed to get a little better for me.
I think it would be impossible for anyone to know how hard I tried.

I still do stuff. Today it was a greeting card. Oh! It was awful. It was all gluey like
something I would have made in the third grade. I made a big tall paper birthday
cake and then covered each layer with different colors of tissue paper and then around
it I painted little fairies with tissue paper wings... I used a lot of glitter and gold paint.
The wings wouldn't fold right. The glitter remains on my diningroom table.

I leave you now to go peel glue off my fingers and give myself a manicure. The fairy card
for my grandaughter is in the trash. I'll buy one at Hallmark because I Care Enough ...

My last post may have been a wee bit pessimistic. I don't wish my attitude on others. I read
something that called these painful neverending conditions "a little death."
Right here on the Forum we
are free to grieve. Ain't nobody gonna sing "Don't worry. Be happy." Here we can be who
we are at the moment. We can have other voices help us along. Priceless. Sometimes we
change a little the next day.

And it's possible that we find ourselves lost in fairy painting and grieving the loss of our
best paper. And like Tina said, I hope today is a better day for everyone.

Pamela smurf

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/25/2008 1:03 PM (GMT -7)   
Pamela,
I so admire anyone who even attempts creativity! I'll bet the card you tossed was better than anything I've ever made! I like to look at others' creative efforts because my creativity moves in different directions. So when people make things and have beautiful flower gardens I smile and thank them in my head and heart because all my plants die! I am good with animals, though!

Anyway, I loved this part of your post:

"Right here on the Forum we
are free to grieve. Ain't nobody gonna sing "Don't worry. Be happy." Here we can be who
we are at the moment. We can have other voices help us along. Priceless. Sometimes we
change a little the next day."

I think this is how we heal, and help eachother heal. Find that "new self". And you're right, Pamela, it's priceless!

yeah

PaLady

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/25/2008 1:58 PM (GMT -7)   
Hi PaLady:

I just wanted to say I share and understand your feelings. I know I don't post often here on the CP forum, but I do read the posts and I just wanted to say I'm sorry you're feeling so poor.

I'm hoping that things are looking a bit better for you and that your pain has lessened for you. I'm afraid I can't offer any suggestions as how to cope with things. I take each day one hour at a time, I'm in a position where that's all I can do. I've got a terminal condition and unless I get a miracle I'm going to be leaving this planet long before I'm really suppose to. How do I go on and face it all. The never ending hours upon hours of pain and suffering, I'm honestly not sure what keeps me alive and fighting.

I know having this HW family is a HUGE reason why I'm still holding on. So I offer to you my hand and hold on tight we'll make it through together.

Hugs,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/25/2008 2:14 PM (GMT -7)   
Dear Barbara,
Your post touched me dearly. I reach my hand back to you, and we can hold on together, as you said.

I wish I had a magic wand I could waive and cure all of us, because each one of us would bring so much wisdom back to the "real" world. But maybe we each have to do it from where we are.

The fact you're still reaching out and posting and fighting is inspiring to me, and I thank you for being here. For being a part of "our" family.

The fact you have to suffer in pain is beyond me. I hope you somehow can find doctors to provide you better relief.

If I can help more, please let me know. And feel free to join us here at the CP forum anytime.

Thank you for sharing yourself!

PaLady

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/25/2008 5:47 PM (GMT -7)   
Barbara Lee,

I too want to welcome you to the forum. My welcoming words would be the same
as PaLady if I didn't stumble on my fingers.

As PaLady said, "The fact you're still reaching out and posting and fighting is
inspiring to me, and I thank you for being here. For being part of "our" family"

Come often. Come in all the shades of your moods. God! It helps so much.

Pamela

Post Edited (Pamela Neckpain) : 10/25/2008 6:50:26 PM (GMT-6)


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 10/25/2008 6:33 PM (GMT -7)   
Palady,

I hope you are feeling a little better today. Just wanted to let you know I've been thinking about you & praying for you.

Skeye

Scrizzy
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 10/25/2008 6:34 PM (GMT -7)   
You are right to feel so frustrated and so angry! You really can not believe the stories and pieces of advice that have come my way:

"Why don't you just take a Tylenol"?

"You have Rheumatoid Arthritis? Oh so do I. My doctor told me that my thumb hurts a tad bit sometimes as a result. So Aleve is just the best, don't you think?"


nono

That is only the beginning of my hurt, and feelings of abandonment. Hang in there.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/25/2008 7:33 PM (GMT -7)   
Thanks, Skeye - that's so sweet!

And welcome, Scrizzy! We're always sorry to see one more person in CP, but glad you found us. This is a great group and i for one need the support that's here.

You'll find many understanding souls.

PaLady

Scrizzy
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 10/25/2008 7:42 PM (GMT -7)   
Thanks for welcoming me!!!!!!!!!!!!!!!!!!!!! I have hope, but to feel welcomed like this adds to my spirit.

I tried to send a post, but it has not appeared. Or maybe I left out some things. How is your pain today? How is EVERYONE??? Stories of woe accepted here.

Scrizzy

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/25/2008 10:32 PM (GMT -7)   
Scrizzy,
Sometimes the board's technical aspects are a bit quirky for me, too. First, make sure you're logged in (you'll see that in the top control panel). The Help menu is also very, well, helpful! LOL And I think about once a week I find I need to log in again; not sure why. So if you're not logged in you won't be able to post.

I'd also suggest starting a new thread (topic) and introduce yourself to the group, tell us anything you want to, ask for support, etc. We're not doctors and can't give medical advice (a quick look at the forum rules is worth it - they really help this to work smoothly) but there's a lot of experience here. As you can see from this thread I started, I was pretty frustrated, but coming here has already perked me up. And meeting you is one part of that.

Again, welcome.

PaLady

Scrizzy
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 10/26/2008 12:55 AM (GMT -7)   
Hey, PA Gal!

I am in fact logged in, and I really appreciate your help! Perhaps my topic is yet to be monitored and edited due to weekend hours, no? I just finished a jewely order for a client. Finally.

Now to bed.


redface

Thanks for your kind words. Needed that real bad. Thanks for the welcome.

Scrizzy

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 10/26/2008 9:58 PM (GMT -7)   
Here is a ((((((HUG)))))) from me to you.Hope you feel better soon.Remember all of us do understand and fell bad for you.
Lost half of my small intestine, Nerve damage to right leg,part of my right hip bone removed,hernia,infection in my back called discites,and depression


Scrizzy
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 10/26/2008 10:11 PM (GMT -7)   
Thanks, Mom (is that mother of nine?)

I just got word from the Chronic Pain support group (a member) I had left and the facilitator lied about why I had left her group: that we were not allowed to socialize outside of group and that I did not agree with her Control Freak regulations. We had a neat thing going. Now I am grateful to be welcomed by you. You have nerve damage as well? And a host of other things which would make us sound like twins.

I have hope, Mom9mom. I do. Thanks so much for your response. I have RA, Osteopenia, Thryroid disease, RSD from Foot surgery, have had a hysterectomy, two myomectomies, and a polypectomy, skin cancer surgery, depression as well (gee, I wonder why) two remaining neuromas in my right foot and my family doesn't understand a single THING!!!!!!!!!!!!

My dad is a Medical Doctor! My mother and sister, nurses! When one of my three sisters got breast cancer (now in remission with gorgeous free new boobies badly needed by our lack of natural endowment, jogging now with her dog - the whole family and WORLD DOTED of her. She is doing GREAT now. I live every day in hell, in disappointment towards my family. In absolute astonishment to the amount of support groups and FREE SERVICES like transportation for cancer patients. Where was this service when I was on Crutches for six months? Not to mention the pain that chronic in nature - is something I need to hide for fear of being even further abandoned by society.

Friends? Funny how you find out who your real friends are when you go through this, no?

How do YOU deal with it???????

Scrizzy
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