Wow..Just...Wow

[MakinIT]

Ok...since 2003 my life has been pretty much turned upside down, and I feel shook out like the first cake I watched my 12 year old try to make the other day (no advice 'cause she knows everything...that's why we had cake chunks, frozen so we could put icing on them) anyway. Somewhere along the line I think I explained a bad fall I took on a camping trip in the beg of August. We were playing in a creek, I turned to walk back, I slipped and landed on my right hip and my right wrist, but arm was held straight so my shoulder came up to my ear. THAT at the time was the least of my pain. My IC flared so bad I felt like my belly was being torn apart and my pelvic floor had the sensation of giving birth. I had a huge A## bruise on my hip (femur joins the pelvis...ooooooh owie) and my thumb could not reach across my palm. needless to say , I was in extreme pain the rest of the trip and I tried to ignore it but it did not work. I slept in the Yurts (cabins) and hotel for much of the rest of the trip.

So, we get home, I get sorta workedover by my chiro, my doc pokes and prods and both tell me to stop falling down. Duh. It occured to both of them that I was suddenly becoming much clumsier than usual. (Grace is not my middle name) I had shoulder pain, odd spasms on my right side and had to pee but couldn't go . My pain was going up by leaps and bounds. I had already been Dx'd with Fibro, Sjoren's lately what was new? Doc ordered an MRI. Turns out I have Osteophyte complexes growing not only where the nerve branches come out of your neck (which is fairly common in women about 20 years older than I, but I have had some pretty rough medical problems) But the damn things are growing into my actual spinal canal. like where if you break your neck you're toast. Both my chiro and doc did tests and found my right side to be weakening rather rapidly. My back muscles (the lats) are trying to help make up for the Deltoid, bicep and tricep but it ain't a working so good. The report and MRI (on disc) went to the nuerosuergon..I was kinda freaked at the thought of having my spine operated on but if it would stop the pain (including the deep throbbing in my arm and leg) and weakness...So he looks everything over, does the testing and says "I won't operate there until the osteophyte complex is bigger and impinging on your nerves more...." WHAT? This complex covers 3 to 4 neck vertabrae. as it is, I'm looking at reconstruction of my spine in there....why not do it now? UGGGGGHHHH. I am going to get a second opinion. Oh..on top of all that, I tore my rotator cuff during that fall, so that causes pain as well, but nothing like I'm feeling from neck. My chiro can't adjust me, but he does put me in traction which feels wonderful. (straps my forhead then very carefully pulls the neck by lengthening the table..I yip after about 2 rotations but just the pressure off my vertabrae for that time helps so much.)

And this has not helped my IC one bit. My husband has been so much better about understanding my pain and getting on the kids to help me and respect me. It's odd though. All the pain meds I take, nothing touches this pain, in my head. I actually threw up at the store the other day. (clean up, Aisle 6) The pain is intense. I am going to go back to my pain doc but I have another option I am going to explore as well.

Take care....I hope this paiin lessens...my sense of humor is slowly getting grumpier.

T

[leelee88]

((((((hugs))))))) and prayers are headed your way....I am so sorry you are suffering so much...

[ICNDonna]

:grouphug:

Donna

[Berkshire Road]

Oh, Tracy, you never seem to get a break! I'm so sorry. Absolutely, get a second opinion. Maybe even a third. I don't know anything about this condition but it sounds like it could have serious implications.

You are in my thoughts, all the time. I just want you to know that.

[MakinIT]

Thanks...I've found 2 of my valium and one 5 mg Oxy has a settling affect on my neck. Very wierd. I can just be squated down to look at something and raise my rump first to stand up and I can feel all my vertabrea from my uppershoulder girdle all grind and clunk. Then I don't want to stand b/c I know I will lock up and I will hurt like hell. Anyway...I have an appt with a PT (a PT Doctor) on Oct. 1 then I will start PT regulary for the month see if they can improve my strength and balance. If not, they will look at my brain on an MRI to see if need to worry about MS or something like that. (They couldn't see my brain on the MRI earlier this month) The PT group I'm going to works with the Portland Trailblazers. They should be good.

I have to sleep. Ipm dying........''thanks mucho

[MakinIT]

Hope you all don't think I'm just popping in and complaining, and I know I've said that before. I've had painful stuff going on for the last 5 years, been angered by it and I truly feel like someone has just taken me and spun me around about a thousand times, because I still don't know what the heck I'm supposed to do. So I determined to say "well.. the heck with it, I'm going to better myself...bought a guitar and was ready to start guitar lessons (she is pretty), signed up for creative writing and am working on my drawing. I wanted to come to terms with this so I could get our family to heal. Then BAM..this happens. I can't even put my arm over the damn guitar, it really hurts. I schedule all my doc appts at 9 am b/c I can't drive any later in the day. By 3 I have to nap, even if nothing is done and I don't have anything ready for dinner (or any clue) It doesn't help that one kid is now a vegetarian (and she'll stick with it, she never has cared for meat) and my Father in Law throws a tantrum everytime I choose to make something other than beef and potatoes. I'm not gettting into family stuff, it is me that is struggling, they are just being typical humans who honestly don't have a clue about what I feel. And I don't want them to really have to know. I was very frustrastred one day, trying to get something in the kitchen and I couldn't get my arm up and I was crying and my older daughter came out and asked what was wrong. I started to explain a little bit of the issue, but she cut me off and started to complain about her boyfriend having to shave his head for a part in a play (Daddy Warbucks) and she just flitted out of the kitchen. I stopped making dinner, went to my room and covered my head. My husband got home about 30 mins before dinner, he had the youngest...and ....after talking for a few minutes, we had pizza...I'll talk later. Myhusband is coming to bed, I'm tired and just wanted to say sorry for complaining.

[MakinIT]

So, I think this morning I figured out why my sleep is so unsettled. I wake up every day with my lower back, hips very sore but have aassumed it's the IC. Generally, I wake up every hour, have to get up and walk around and stretch, and often get on the computer at some bizarre hour of the night. I have been bugging my husband for a new bed for about 6 months. He needs it too. We haven't had a new bed since we were married...18 years ago. I am seriously sleep deprived and the meds don't help. I basically begged him this morning to go look at beds with me in the next week (600 bucks for a pillow top set, 12 months same as cash...we'd have it paid off..no biggee really when you consider the discomfort...there are a couple of other minor bills that we can get rid of) He simply looked at me and said "no". End of story. As if I ama child. However, he bought my eldest a very nice alarm clock...hi tech for the ipod (the youngest has one so the eldest felt it unfair.) I will admit I have the nicest of the alarm clocks,no lies. But it was still expensive and he just bought 12000 dollar speakers for his computer (for presentations....) He needed them but he didn't have to pay that damn much. I only knew it was that expensive because I accidently came accross the invoice. I almost pooped my pants. Both of the girls are getting complete room redo's (like the 4th for oldest since she became a teen and the 3rd for Kelsey since she was 8) Our room? A cluttered dusty messy depressing ...mess. Everytime I clean it, he refills it with more stuff. GRRRR. Pack rat. I have no trouble throwing out stuff. Actually it's kind of funny. When he wants the room cleaned he has to leave but I give him a shoe box to save his "valuables". He mutters for an hour, but then clears out. It hasn't been now in 3 years. I am to the point in which I have to lean over boxes to get to my clothing. quite pathetic.

Pain was nasty today but I figured out a way today to make them work better for me. Every joint was on fire and I have the lovely misfortune of being allergic to anti inflammiatories. I pretty much curled up, dozed, and watch football, after reading of the Ducks trouncing of Fresno st. this weekend. Wow...Michegan last weekend, at the big house....I love it. Our headline said "Oregon 113 opponents 31 over last 3 weeks" Ah...the pleasure of big wins for a few days. (then we always crash) At least no loss to Cincinatti st., eh there Big Beavers? (don't worry, we have those moments too, they suck big time...But not this year....Bwa ha ha ha...) sorry, a little U of O, OSU rivalry. Of Course, the UW fuskies didn't do so well either, eh? but you we playing a kick butt school.

I should go to sleep. I have a feeling its another night by myself, untll I wake and come out to get some water. sleep tight everyone.

T

[Berkshire Road]

Hey -- I sent you a PM. But I want to share this part with everyone: If you have a bad mattress and can't replace it right now, try the memory foam mattress toppers. (Don't know if that's a brand name or not, sorry Donna). They are foam pads that sit on top of your mattress, under the mattress cover, and they support your body really, really well. The pillows are good, too.

Just a thought.

[MakinIT]

I'll read your PM but he's said no to that as well. Last night, I fell asleep at 9 pm woke at 10:30 when he came to bed, and stayed awake until 4 am. I got up and tried to sleep on couch but my rotator cuff tear makes things even more uncomfortable. I finally took 3 more valium and slept but not well. So it was 6 am when the alarm clock went off (husband swore he had to get up then,no later, today is his first day with kids) but he continued to let the alarm snooze and my oldest kept coming in to tell him to get up (he has a reputation) and I knew he needed in by 6:30 or he would conflict w/Kelsey. So, I was going to sleep til 8 but by that time I was awake and couldn't sleep. (Ihave a dental appt.)

I am very tired. I am a little apprehensive about driving across the river for my dentist appt.

[Julie B]

I was finally able to convince my husband to buy a new bed after we slept on a great mattress at a hotel. That helped but didn't address the entire situation. He thrashes around and has night terrors....where he often yells and basically goes bonkers in the middle of the night with no memory of it the next day. Like you, I have a problem shoulder, and with the IC I need complete stillness to actually fall asleep. It is just difficult to share a bed with him.

These days, he goes to bed at 10...........I prowl around until 12 or 1, catch up on email, ICN, reading, or take a bath........go to bed.........then he is up at 6..........I get up at 8. Even without 8 hours of sleep most nights, I get more rest than if I tried to deal with his thrashing around. I have crawled into my son's bed (he is at college) a couple of times. I hate doing that, but honestly, I get my best sleep when either he or I am on a business trip and I have the bed to myself. Sad but true..........

Sending loving hugs..............I hope your dentist appointment went well.

[ICNDonna]

I love the memory foam stuff --- pillows, mattress toppers, etc. They come in lots of different brands. But because of hubby's back, we sleep on a firm mattress --- I do fine on it. When my legs hurt, I put a pillow between my knees and that seems to help a lot.

I hope your today is better.

Sending gentle hugs and well wishes,
Donna

[MakinIT]

Well the bed is a non issue now. I got a phone call from THE STANDARD, my long term insurance company that paid my "bills," barely until Social security and now gives me a check each month that makes up for social security and the LTD former check (minus any COLA'a)..in other words, The standard never pays COLA'a. So they called me last night, after my meds and the woman first asked for info regarding myprescriptions, letting me know my 5 year "disabled from own disability" period was up and needed to provide info that I was still ill and if I had any other problems, and the clincher....apparently when my Social Security came through and I got my back pay last year (like 54,000....) they took all but 8,000. The other was payments they had made that social security would have made if there was no wait, appeals, etc...the 8,000 was COLA's. I was fine with that. I also reminded the woman at the time who was in charge of my case that I had two children so they had money coming and she said I didn't have to worry..I didn't have "off-set" for them...(eh?) So they each got 12,000 and get 325 a month. This woman calls me last night (new adjuster) and says I have 30 days to ....get this...pay back $27,000,,,,,***? Now, I was medicated and very sleepy so I sounded utterly stupid. But she actually asked me if I still had the money or had I spent it thinking I would get away with it..? I was very groggy but I was very offended and had no real articulate response except that the money was tied up in T.S.A.s and long term CD's. I got off the phone, stared at the wall for a few seconds and went in the bathroom and bawled for 45 minutes with my husband listening. I finally told him what happened and he had his typical emotion less response (it will come out at some point) , I went into the bathroom, took more meds, and sat on the couch and stared for about an hour. Interesting, my youngest, who gives me fits, came out of her room and saw my eyes were very red and I was upset. (You have to understand, in my mind, with my disability, this has been the only gift I've had to give my girls...some money to help with college) Roger was gone, and kelsey sat on my lap and asked what was wrong. that made me start crying and I told her it was nothing she needed to worry about..I saw the expression on her face and allthe illness in our family as well as recent deaths I knew I had to tell her something and I thought she'd flip. So I explained as best I could. She was very angry that this woman called and got me so upset because "I shouldn't be allowed to get so upset"...and she said, bless her little heart, "mom, just take my money...there is over $14,000 in there and we can do something else for college." I've already figured I'm going to have them take my pay and just pay the amount due from my pay until the debt is gone. It will take 34 months w/o the Standard pay. (They've reduced that pay to $700) I told her that her money was wrapped up but she was very sweet so she told me to take her monthly income and use money in her money market. Her older sis came out, saw us in a heavy conversation and asked what was going on and I explained. She was first "are you giving them my money?" I told her no but I told her I was going to have to take her last few $325 payments. She freaked and cried. Kelsey, the 11 year old told her 17 year old, nearly 18 year old sister to grow up...the debt was almost as much as we owed on our home.( It's true...she figured that one out on her own)
So that was charming. I found out some interesting news this morning. When I talked to the lady from the Standard again, I found out when Caitlin turns 18 (or finishes high school), whatever...isn't allowed beni's anymore, the money goes to Kelsey. The Woman told me it didn't matter if I had 2 or 12 children. First, dependents get half of what I earn on S.S.D.I. So, when an older dependent ages out, the money from that child gets distributed among the rest of the minors. Have you had that experience? (those of you with social security and dependents)

The real major pain in my heart last night was that I was very upset, slept on the bed but woke at midnight. Came out and talked with Roger and Caitlin. Went back to bed, Roger was sleeping on the couch to make DVD's for his students from last year on the computer (today was the first day of class for them) I headed back to bed, started thinking about my problem again, then came back out and he was watching porn on a damn video camera. Now...I've already explained how our love life has been (negative) and he has been as emotional as a robot. He has tried, it seems, but last night Ireally needed him to hold me. I calmly explained some ideas I had then left. then I came back out (he had stopped) and I told him I was very hurt by his behavior (I was a lttle more direct). I'm not prude, but he NEVER has sex with me anymore. He did in May, prior to that....at least 4 years. prior to that, all systems go. He now chooses this over me. I'm 42 and a little, well, less that model in form..ahem. but that has never been an issue with him. And now, with this money thing hanging over my head
I'll talk later....bye

[Kara29]

Tracey,

I'm thinking of you. I hope your Husband can work with you on everything. Have you seen a counselor at all for this? It may be a good idea if you can get him to go and you can afford it. Some insurances will cover some therapy. I'm so sorry about the finances. I am always in that sort of spot being on disability. Anyway, we are here for you!!!

BIG HUGS,

Kara

[MakinIT]

I started to talk to my husband about it last night because he was in a good mood, seemingly. I was just repeating the conversation I had with the woman during the day. Basically, in his mind, it's my fault and I have to figure out what to do about it. but it will screw the entire family. I talked to someone I know who was a claims adjuster in auto insurance and she said if they took that long too catch an error, and it wasn't the fault of the customer, they would eat part of the error. I somewhat made that apparent in my thinking yesterday (it was already on my mind) by saying "this would have been much easier for me if you would have taken it when you were supposed to." She said it didn't matter. I don't know what to do. I woke up this morning and briefly felt good then that matter settled on my head and I got sick to my stomach and rolled over and went back to sleep. I have to get up now and shower because my oldest needs me to pick her up/

[Berkshire Road]

Call them back, or write to them, ask to speak to a supervisor. Ask for a written explanation detailing exactly what these charges are for, dates, and an explanation as to why this was not brought to your attention any earlier. Tell them what you were told by the woman you spoke to earlier. This just seems weird to me. The SS family benefits aren't yours; they go to your dependents. Explain that the first woman told you the LTD company would not be coming after any benefits that were paid to your children. Also, complain about the tone and manner of this woman who told you you wouldn't "get away with it."

Maybe you should speak to a lawyer about whether you have a case in equity. If you disclosed everything to them and they did not bill you for it over a certain period, then it seems unfair that they should come after it now. A lawyer would know the particular rules in your state for equity claims. But you need the detailed "bill" explaining what all this money you owe them is, with dates, before you can really get legal help.

I know you must feel defeated by all this. Please don't give in!

[MakinIT]

Thank you. I contacted SS and got all the COLA's from each year and recalculated it based on how they did mine and it was correct. My LTD contract apparently has a section on OFFSETs. I was verbally told that I had partial offset, I didn't question it . (meaning just me) Then they told me it was Full offset. (I really didn't understand the different terms) so I checked my contract, thouroughly, and yes. That is the truth. So in further conversations with her, I got the idea she has no sense of humor of any sense of compassion...so she seemed rude, but she is just like reading from a text. I did get a a very thick packet today that had a break down of all of what is calculated. So, I'm still stunned but I have worked some stuff out and they are going to have to take payments from me, which she is willing to do. I did find out good news, in terms of taxes, and rollover of my elder child's money when she ages out. (it becomes her younger sister's) So Kelsey will get both beni's but I have to use her current money to live on for the next 2 1/2 years. (along my social security check) So she will have no money left by the time this is all over but she will have over 30,000 when she starts college. (700$ X 52 months) I think..I caluculated in my head.

I guess I'll have to survive...I have alot of debt but will have to figure out what to do. I am still stunned.

Tracey

[MakinIT]

Going to call The Standard tomorrow and propose they just take my check for the next 35 months. It will suck. My husband has been absolutely awful to me even though he says he doesn't blame me. We did find some nice tax advantages in the situation though so a small silver lining...I'm very tired and need to sleep, I am emotionally and physically drained. I found some other things out about my husband this weekend that really made me ill to my stomach ( you know that pit feeling you get)

gotta go

[ICNDonna]

Have you talked with an attorney about your LTD problem? If not, I suggest you do.

Donna

[Berkshire Road]

I agree with Donna, please go see a lawyer. I can't give you legal advice on the ICN but I really believe there is a standard in equity that might help you. Equity means it's not a law on the books, but the courts can rule in some situations based on established principles of fairness. Just ask a lawyer, it can't really hurt.

[MakinIT]

I sent an earlier message and I must've lost it between my life and my daughter's tantrum with least common multiples. I will write tomorrow with more fun news...not....regarding things in my life, and asking what you would do faced with the same choices...be prepared to be my sounding board. I need to talk to real people not faceless buearcrats on the other end.

tracey:hi:

[Kara29]

I agree with Donna,

We can't really discuss legal issues here. Please talk with someone on the outside regarding specific issues. I wish we could help you but we are just not prepared to do so.

Discusing complex illness issues here is what we are here for.

I'm sorry..........

Kara

[Berkshire Road]

Always happy to be your sounding board, Tracey! :)

[christinaw]

Hi there,
So sorry things are so difficult for you right now. But, you really need to seek some legal advice to sort out the multitude of issues that you have facing you right now. I'm not sure where you live, but there are legal aid society groups in most states that will help you based upon your ability to pay (sliding scale fee). Same goes for counseling. I think it would help you tremendously to have a sounding board "in person" for everything. You can always count on us to be here for you though....
Have faith....
Wishing you wellness....
cjw

[MakinIT]

Never was asking anyone for legal advice. I know, legally, from reviewing the contract and getting a clarification of the language that they are right. I am just feeling like things can't get worse...they are also taking my retirement from teaching (forcing me to cash it out when while it was in, it was collecting interest and it would have been paired with matching state funds when I retired.) So I am losing all my security in less than a week, and my marriage is not going to survive much longer, I am getting sicker and really just don't give a rat's ass anymore. And yes, I am seeing my counselor right now on a multiple week time. I just thought maybe some of you, with the complications of illnesses and surprises of husbands, children and sudden money insecurity, may have a comforting thought or two. I'm not at all upset at anyone I'm just frustrated because I have no where to turn. I want my job back.

[MakinIT]

sorry to be sounding sounding angry, mea culpa. I have alot of emotions going on right now and call it PMS without any Msing. I guess I've just looked to everyone I know for support and they don't get it, I thought perhaps maybe someone has been in this boat before. I fixate on how happy I was 5 years ago and meanwhile my life is going by but I try to let it go, and just I think I'm there and ready to forgive myself for this situation, this entire thing goes to poop again. So. Again, I'm sorry.

[MakinIT]

would the moderator close this thread please?