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Posted 3/30/2011 8:31 PM (GMT 0)
Screaming Eagle suggested I repost this in a new post -- hope I'm doing this right. At any rate, I'm glad to be here. Not sure is a new topic is a new post. If I've screwed up, please let me know how to do it right.

Reposting:

I just joined a few minutes ago, and I'm delighted to find you all!

Let me see if I can introduce myself without sounding like I'm whining. First, I'll give you the short list of what's causing my pain:

* Fibromyalgia
* Compressed nerves (cervical & lumbar)
* Bulging disks (cervical & lumbar)
* Tendonitis (both elbows)
* Spinal stenosis & bridging osteophytes
* Osteoarthritis
* Facet joint issues


That's all I can think of off the top of my head. I suspect there's more, but the meds make me dopey and forgetful.

Up until three years ago, I was working full-time, and loving it. Now I'm on Social Security Disability & fighting the good fight against my long-term disability carrier, which hasn't paid me since last July (and that was retroactive to the previous September). I've had a laminectomy & fusion (C3-7), and just recently a tenotomy in my left elbow (NOT having the other one done, by the way -- the tendonitis pain is so minor compared with the rest of it that it's not worth the aggravation the surgery caused).

I've had epidurals (5 or 6 -- lost count) in both neck & lower back, live on more meds than I'd like, and just found out I have to leave my magnificent primary care physician because of an insurance change. Seeing the new PCP next week, so fingers crossed she'll be as good as the one I just left.

I try to stay positive, but -- as I'm sure you all know -- it's hard sometimes. I'm stuck at home since my husband totalled our second car (he's fine), plus I'm so dopey that the days just drift by.

I run a small nonprofit organization (unpaid), and I've had to recruit volunteers and delegate as much as I can. Plus my little bit of freelance work (way under the Social Security minimums) is tough to do.

Progress is slow... but there is progress.

What keeps me going is my husband, who has been terrific, and the fact that 20+ years ago, when I had two near-fatal accidents and was first diagnosed with fibromyalgia, it ultimately turned out to be the best thing that ever happened to me.

I'm eager to hear from other people who are going through similar situations. I've checked out many forums in the last few days, and this seems the best run and the most positive.

Looking forward to hearing from anyone who cares to write back.

--P
Posted 3/30/2011 8:55 PM (GMT 0)
Welcome sherlockjr. It is great that you have the support of your husband! My wife too makes a huge difference in my ability to live with pain.

I see that you're fighting with your LTD carrier. I'm curious about that. Can you tell me a little more about the terms of your insurance and why they aren't paying? I ask because I've had LTD insurance for years and may one day have to resign from my job and turn to them.
Posted 3/30/2011 9:27 PM (GMT 0)
Welcome Sherlockjr!

You did just fine!

I'm quickly headed to a financial dinner presentation, but will return later tonight to properly welcome you here.

I'm sure others will be here shortly to welcome you on board. Enjoy! smilewinkgrin

SE wink
Posted 3/30/2011 9:33 PM (GMT 0)

Cogito said...
I see that you're fighting with your LTD carrier. I'm curious about that. Can you tell me a little more about the terms of your insurance and why they aren't paying? I ask because I've had LTD insurance for years and may one day have to resign from my job and turn to them. (

My understanding is that a lot of these carriers will refuse to returns calls, ask for more and more info, and generally mess with you in the hopes that you'll give up and go away... which means they don't have to pay.

Usually (so I've been told), once you've got SS Disability, most of these companies then rubber stamp your long-term benefits. But not this one. I'm in the process of trying to find an attorney, and that in itself is difficult. This would be a lot easier if my brains weren't so scrambled.

In my case, they've paid me twice -- both retroactive checks. Now, they owe me back to September 2009, and I should be getting ongoing checks. But no. They ask me for updated medical information, I get it to them (NOTE: Keep copies of EVERYTHING! Trust me. You'll need it.), and then they say it should just be a little while longer before we get a decision... and then they ask for update medical info, starting the whole procedure all over again.

Arggggh!

--P
Posted 3/30/2011 10:35 PM (GMT 0)
Hi Sherlock Jr., yes, you did your re-posting just fine. Any time a new member comes a long we do ask they start their own post introducing themselves so all members get a chance to read your post and give a proper hello and welcome aboard. By posting on someone else's thread you may not get noticed and not welcomed.

I am very glad that you have joined us here at the forum. You will find all of us suffer with CP for some reason or another. At least by coming here you know that you are not alone in the journey of dealing with CP. It can make us feel so isolated that is for sure. What is the old saying, misery loves company, lol. Well, here we are a bunch of us lol.

I read about your fight trying to get the LTD re-instated. Oh, I have dealt with UNUM which is one of the biggest carriers in LTD and they are the rotten to the bone. I do not know how those people can look at themselves in the mirror every morning let alone sleep at night. When I was able to work I worked in the legal field and dealt with many types of insurance. LTD is one of the very worst and they need to have a reform done on those people. I know several years ago one of them was sued and it was proven they denied every claim it was their practice to deny, deny, deny. Please know your company is not singling you out, this is their common practice. I would send a letter of rep to them on behalf of our client and give them so many days to respond, then I started calling them every day until I talked to a human. I documented the date & time I called and the whole bit. Usually, we were told a new adjuster had the file and would be contacting us once they had reviewed their file, then it was oh we need more records from the dr so I would fax those records to them. I always had the current medical records in our file. Then one more time it was well we did not get the records, oh yes you did I have a fax here telling me what time and how many sheets were sent. They were just absolutely awful. We fought them tooth and nail. You are so right, if you get approved for SSD usually they kick right in and pay. Do you know why the do this, it costs them less money because they get an offset from what you get a month in SSD. Most of them require the person file for SSD and this is why. They pay based on what your income was when working and SSD will pay the bulk of it and LTD only pays the balance to bring it up to the amount of your wages. Keep looking for an atty to help you with this. Do not give up that is what they want you to do. Be sure to keep a copy of everything too. Document when you call and who you talk to.

Anyway, I wanted to pop on and tel you welcome aboard. Take care.
Posted 3/30/2011 11:57 PM (GMT 0)
Thanks, stradog. Your descriiption of the LTD nonsense is identical to what I've been going through. Which is why my husband & I finally realized we had to find an attorney to help us out. So far, still searching for the right one.

Could certainly use some advice, if anyone has been through this before... finding an attorney seems as difficult as anything else I've been through. I even tried a lawyer referral service, but the attorney I was referred to doesn't actually do LTD, so I'm back to square one on that.

--P
Posted 3/30/2011 11:58 PM (GMT 0)
Oops. I meant "straydog"
Posted 3/31/2011 1:29 AM (GMT 0)
Thanks, Paula, for the welcome wishes.

Years ago, I tried joining an online community, but most of the people on that particular group seemed to spend most of their time whining, and it really brought me down, so I've avoided such things ever since.

But just lately, I've been realizing how isolated I feel, and decided it was time to try again. I've looked at half a dozen groups in the last few days, and this one seems like the most positive place.

I'm lucky that my husband has been so fantastic. I also have a very dear friend who has similar physical problems to mine, and who is also a doctor, so she's been a great resource for me. Another good friend and I trade off supporting each other, and that helps a lot, too.

The hardest thing, I think, in additon to just the day-to-day dealing with the ups and downs of the pain and the sometimes overwhelming medical system (or lack thereof), is having to mentally redefine myself. I've always perceived myself by what I can do, and now I can do very little. So I'm trying to redefine myself by who I am, not what I can do. But even that is hard -- my patience level is very low and I get irritable easily.

I've tried to live what I'm calling a "minimalist life," where my triumphs are little things, not big ones. Today, for example, I put dishes away, started to reload the dishwasher, washed out the popcorn popper, hard-boiled some eggs and got the mail. And I'm exhausted.

Any advice on how to rethink your self-image in light of chronic pain would be appreciated.

--P
Posted 3/31/2011 2:55 AM (GMT 0)
Welcome to the chronic pain forum sherlock jr. It's good to have you here. We're all a big family here. There are some of the most wonderful and supportive people here. I haven't had to deal with the long term disability before, but I wish you good luck with it. Keep fighting. You take care. I hope you are having a low pain night.

hugs
Loretta
Posted 3/31/2011 5:17 AM (GMT 0)
Thanks, Loretta, for making me feel at home. It's starting to get late and I'm tired, but tomorrow I think I'll explore the rest of this community... maybe check out some of the other threads.

--Patty

P.S. A couple of hours ago, I put a signature on my profile, but it hasn't shown up here. Am I doing something wrong?
Posted 3/31/2011 12:41 PM (GMT 0)
I don't know about the signature here. I had one a long time ago when I posted on the bipolar forum, but that was years ago.
I wanted to respond to the "reclassification " of your self image. Not that I have anything substantial to add because I am right there with you.
I always assumed that I would be working, but now that would be simply impossible. I have been at home since 2008. I went through the whole grieving process for the loss of my old life, and am just now coming to terms with that is gone and that's going to be OK. What I don't have down yet is what is it going to be like from here on out.
For me it keeps changing because my pain level increased over the last year or so to overshadow my bipolar issues (not that they are gone by any means) and I am just now getting to a PM to manage my joint pain. It's not under control yet, but I hold out hope that one day it will be and I can come up with a "normal for me".
Posted 3/31/2011 1:49 PM (GMT 0)
Hi Patty, sorry I am so late in welcoming you. I had surgery Monday and I am moving kind of slow. I am so happy you found Healing Well, I also checked out a couple of others before I joined here and this is in my opinion, the best place to be.

I am looking forward to getting to know you better as I am sure everyone else is too. Take care and keep posting!
Posted 3/31/2011 1:55 PM (GMT 0)

    Good morning Patty!

         See there!...looks like you recieved a very warm welcome from the members! smilewinkgrin

             When you fill out the signature line in your profile page, you will also have to click the button that says include my signature when making a post or reply on the forum here. It should work then, but if not, Dani is usually pretty knowlegable in helping with this.

      I can never seem to remember what she tells me though! shakehead

           Give that a try and see what happens.

 SE wink

PS: I just did this, and Wella!....it works! smilewinkgrin   Good luck!

Posted 3/31/2011 3:14 PM (GMT 0)
 

       I wanted to make sure I explained the Signature line for you.

           When you post a new topic or reply to a members post....there should be three buttons at the bottom of the open area. (notify me of reply postings by email), (include Signature), and (Preview before posting)

      Click the "Include Signature" before you submit your reply or post.

              This should work for you!

              Good luck!

    SE wink

Posted 3/31/2011 3:18 PM (GMT 0)
 

   Good morning Patti,

 

    Just a quick note to say "Hi! Welcome to the forum!". I am running a bit late today, so I have to get going. It is very nice to meet you and hope to hear from you again.

 

*hugg*
   dani

Posted 3/31/2011 3:21 PM (GMT 0)
Was the referral service you called for local attys in your town? You may want to look online at the state bar association, they usually have a referral service. Keep looking don't give up on your search.
Posted 3/31/2011 3:35 PM (GMT 0)
sherlockjr i am sorry for belated congrats. as i have said new to this computer and many times have wanted to toss it out the window, but since its my daughters that might not be wise.  Anyway welcome i have found so much common ground with cp sufferers, it truly is finding home. also not having a great day as far as pain so i cant sit to much and since im so unfamiliar with this laptop, if i lose another paragraph i fear for this laptop even though i know its me.  have great and hopefully tolerable day (tolerable for pain) also whomever suggested the signature  thing at bottom thanks now i see it.
Posted 3/31/2011 3:56 PM (GMT 0)
Welcome Sherlockjr to healing Well

We are one big family and always here for one another. Everything from discussing meds or health issues. We are always there for one another.

You hang in there

Soft Hugs

Betsey
Posted 3/31/2011 8:02 PM (GMT 0)
Thanks to _Christina, Pebbles225, damouthy1, Screaming Eagle, Mrs Dani, straydog, NiNi53 and Betsey, for such a warm welcome.

Let me work my way through your comments:

Christina said...
I wanted to respond to the "reclassification " of your self image. Not that I have anything substantial to add because I am right there with you.

I always assumed that I would be working, but now that would be simply impossible. I have been at home since 2008. I went through the whole grieving process for the loss of my old life, and am just now coming to terms with that is gone and that's going to be OK. What I don't have down yet is what is it going to be like from here on out.

For me it keeps changing because my pain level increased over the last year or so to overshadow my bipolar issues (not that they are gone by any means) and I am just now getting to a PM to manage my joint pain. It's not under control yet, but I hold out hope that one day it will be and I can come up with a "normal for me".

What you said about the grieving process got me thinking -- I'm not sure I have actually grieved, and maybe I'll need to, but for now, I'm still hopeful that things will improve enough for me to become more functional than I am now. Perhaps that's a bit delusional or unrealistic, but I can't quite let go of the idea that there's light at the end of this tunnel.

I think one of the hardest things about this is that I genuinely loved my work. Kind of hated my workplace (but that's another story), but I really liked the work I did and the freelance work I was able to do outside of my actual job. Since this started, I've done some small freelance jobs, but it's been so difficult to focus my mind that I get frustrated.

It doesn't help that the anaesthetic they gave me when I had my cervical surgery has left me with a bit of aphasia -- not a good thing for some who makes her living writing, editing and speaking in public. So if I ever write the wrong word, chalk it up to a misfired circuit in my brain.

Paula said...
When you become a member of the "chronic pain community" your life changes dramatically. Your sense of self changes with it and you rebuild your identity from the ground up. A pain psychologist can really help you with that if you are struggling with it. Your PM or PCP can refer you to one.

Wow. I never heard of a pain psychologist. I'm seeing my new PCP next week, and I'll add that to the things I need to talk to her about. I hope she's ready for a long session.

Shannon -- I hope you're recuperating well. I know in my experience -- and this may just be me -- the fibro slows everything down -- so when they say the recuperation is, say, two months... I double it.

Screaming Eagle -- NOW I see the checkbox! I was pretty out of it yesterday, between pain and pain killers, and I somehow never even noticed it. Thanks. Let's hope this works properly. (By the way, I notice many people include their conditions and meds, so that's what I've done with mine. I may add a quote as well in the future -- something positive and uplifting.

Mrs. Dani -- I must say I really admire you. Did a bit of exploring in the community and stumbled on your history -- you are an inspiration.

Which sort of brings up a problem I have that maybe someone can offer some advice with: I detest pity. Any suggestions for how to deal with people who are clearly pitying you? I try to stay upbeat when I see people (If they ask how I am, I always say, "Much better, thanks!"). My feeling is that everyone faces some hurdle in their life, and this happens to be mine, but some people seem determined to feel sorry for me.

straydog said...
Was the referral service you called for local attys in your town? You may want to look online at the state bar association, they usually have a referral service. Keep looking don't give up on your search.

Yes, it was a local referral service. I suppose I could call back and try again. I keep seeing TV ads for lawyers who handle this kind of thing, but I'm leery of contacting anyone who advertises on TV... although an attorney friend of mine (different state, different specialty) says that advertising is starting to lose its stigma.

Thanks, NiNi53, for the kind wishes. Hang in there with the laptop. One of the many things I've done over the years is teach plain-language basic computer skills to seniors and people with computer phobias, so if there's any advice I can give, let me know.

And thanks for the soft hugs, Betsey.
Posted 3/31/2011 9:03 PM (GMT 0)
Hi, I'm new to the forums too. I've been in the chatrooms, u should try that, usually in the evening alot of people get on...just go to whatever room everyone is in.

I'm glad u r ok after your accidents, and that u now know that u have fibro. Its quit depressing at first, i'm 36 and have had it for a long time, but only knew about having it when my disability went thru 4 yrs ago. I used to be on pain meds and muscle relaxers that mad me dopey, but I have a new pain doctor now... he has only given me feurocet to control my migraines...and injections, injections....etc. I am much less depressed now, it kinda grows on u. Pain is something i live with everyday, and i can't remember what it feels like to wake up refreshed, and without pain. injections are great, but its amazing how much i feel the pain in my back when my neck and shoulders are numb. i guess my neck hurts worse. I come to chat almost everynite, my guy works daylite(a chef at a country club) and he plays xbox live and i chat on this site. it always makes me feel alot better. I am on alot of meds also... non that really help the pain. But I'm just glad i'm not bedridden or in a wheelchair. beleive me i have my bad days where i don't wanna get outta bed... but then i feel guilty.

hope u like it here as much as i do

hugs

Danielle turn

Posted 3/31/2011 9:33 PM (GMT 0)
Hi, Sarula. Thanks for welcoming me.

Sarula said...
...i can't remember what it feels like to wake up refreshed, and without pain.

I was diagnosed with the fibro more than 20 years ago, and I really know what you mean. And now that things have gotten so much worse, with all the other conditions, I almost long for the days when fibro was my only problem. At least then I could function.
Posted 4/1/2011 2:00 AM (GMT 0)

i agree, good quote by the way, i love quotes and poems. some of them are so inspiring. I made a mistake when i was a teenager, i was diagnosed with scoliosis at 14 yrs old with a 20% curve. I didn't have any insurance and childrens hospital wanted to see me in 6 months, my didn't have any insurance for us, so i never went back, when i started crying over pain, and missing school she finally took me to a specialist in pittsburgh, by then it was too late, I was 18yrs old and they consider that too old for a brace, i had a 40% lumbar curve, the doc was a jeck, we waited 2 hrs for 15 min of his time to tell me my only option was surgery, or pray and live with the pain. that was 1 of the only times i seen her cry. i was scared and chose to live with it. big mistake and now i regret it. Then i got a compensated curve, so its 21 by 32(lumbar) with 1 rotation.....that curve has deformed my ribs, only 75% of my lung, and the reason for all of my other uncurable issues. I made the wrong choice... it haunts me. but it must have been meant 2 be that way. i'm so empathetic, and enjoy everything in nature(an actual tree hugging, dancing in the rain with the kids and all thats) my cats giv me me a sense of peace i just can't get from people....

"I love not man the less but nature more..."                                                               u take care...text me anytime.... oh try the chatroom, its awesome... u can also go to a private chatroom too

Danielle

Posted 4/2/2011 7:45 AM (GMT 0)
Yes, stay away from the tv guide attys, they are not worth shooting. Their game is high volume-they have no clue who their clients are, much less what their case is about. They are really about taking cases on then a year down the road dumping the client, saying they can't help them.
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