News from doc today

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effie
Regular Member


Date Joined Mar 2005
Total Posts : 344
   Posted 9/10/2005 2:21 AM (GMT -6)   
Dear Erin,
The more information you give them the better.
I do not know why this is, but if you can get a diagnosis indicating that you are also being treated for depression that seems to speed up some claims.
A good person to write to would be Stella Marie from the Parkinson's board. I have seen her help many people in chat to get disability. She also has written a post about it in the Parkinson's site.
Another very knowledgeable person about getting disability is Dave in the fibromyalgia group.
I am sure if you write them on either of those boards and write urgent request for help either of them would be more than willing to tell you the information they know.
I consider the treatment you have gotten to be abusive. The government must know that putting a person through all of this additional stress would make them physically and emotionally much more severe.
I do not know if there are any lawyers around that would do pro bono work for you. Once this finally goes through it should be back dated to the first date you started inquiries, or when you first had to quit work.
No wonder your body is in such a flare state. This stress is just far too much to go through. I would consider talking to stella marie or dave and asking them if they think you should mention how they have handled this is abusive. No wonder you are losing weight, it is bound to be related to the chrons flare which is bound to be related to all of this unnecessary stress.
Judy/Effie

Post Edited (effie) : 9/10/2005 2:35:42 AM (GMT-6)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/10/2005 11:54 AM (GMT -6)   
sad  Camama,
thanx for the spankin' sad   yea, i caved eyes i shouldn't have done it...and boy did i pay too.  and i lied as well.  i left out the chocolate pudding pie. tongue    but it HAD TO BE DONE!  i had the PMS crazies! tongue you know how it is.
                                HOW MUCH PLAIN POTATOES CAN A GIRL TAKE?!!
although i can honestly say, all cravings have passed.  although i really should learn to "portion control" while i go on a binge!  i forget how little i can "actually" eat at a time without feeling sick.
 
with this sleeping problem, it's joint pain plus inability to sleep on my back or sides (tailbone hurts) and then i feel exhausted; but when i turn down and shut off everything THE MIND STARTS GOING!!!  and then i start thinking about fear, doubt, money, work, school, bills....  i'm sure you understand this as well.
 
i usually fall asleep to one of those, "Trauma ER" shows or horseracing TV.  i used to read.  and i used to fall asleep by putting the USA in alphabetical order by state too!  (i never get passed Rhode Island...bam, i'm out).
 
so i am sure it's pretty balanced mentally and physically the sleep problem.
 
thank you for your suggestions.
 
feeling lousy still.  face is really cold and pale.  feeling dizzy.  if i get in the shower & dressed it'll be a successful day.
i hope i make it to my honey's tonite.  hoping i feel better as the afternoon progresses.
 
what ssri's have you been on??  i had a very bad time with Effexor and Prozac...never again.  i guess i have a jaded view.  but maybe by hearing more about it i'll warm up to it.  i do believe they help with pain and chronic illness.  i just can't seem to muster up the guts to take them.
 
skull  being a good girl today...no dairy of any sorts skull tongue tongue tongue
erin

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/10/2005 11:59 AM (GMT -6)   
Dear Effie,
 
I think you're right.  And looking back on it I should have answered YES to when the doc asks every single time, "are you depressed".  It probably does help your claim.  I don't know....I hate the whole process.
If I get denied...I will fess up and say I am depressed.  Even if I'm not!  Just to have it on their.  I mean, isn't there ENOUGH diagnoses on there already!!!
There are disibility lawyers...I can't afford one.  But if I am denied this time, I might consider getting one.  Sometimes they refuse any money until you get a settlement.  The whole system sucks. (excuse my language) but that's the best way to put it.
 
how are you doing today??
 
{{{{{{{{ hugs }}}}}}}}}}}
erin

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 9/10/2005 4:51 PM (GMT -6)   
Erin, don't wait to get denied to admit to your depression - it's not a bad thing. Honestly, I think we're all a little depressed at a minimum - in fact I think we've all realized/admitted it here on HW at one point or another. The fact is, when you are dealing with chronic, daily pain as we are and the stresses that go along with the knock-down illnesses we are all enduring - how can you NOT be somewhat depressed? We're constantly being hit with the realization our lives are changing and the selves we used to know are no longer. We strive to get anywhere from making it through a day feeling somewhat 'normal' to achieving that awesome feeling 'I'm in remission!' But, it's not up to us and it is frustrating and depressing.
 
The only reason I finally realized I was depressed in the beginning was my doctor at the time (awesome lady) gave me a pamphlet on depression. There was a little quiz on it. After I took it (honestly with no cheating) it said, "if you can say yes to 3 or more of these items..." My answers? Well, I said 'yes' to 9 out of 10. It was a bit of a shocker. Now I am more aware of what's going on with me because of going through such a severe case of it back then.
 
I don't recall why - but initially I was on Elavil for about a year....there were some issues with me being on it. Possibly my age and marital status (fear of getting pregnant on it, I believe) - but, it seems there was something else and they switched me to Paxil. Possibly the Elavil was making me too spacey and tired, but I'm not 100% on that memory. Paxil was AWESOME. I was WIRED for 2 weeks - didn't sleep a wink, and I'm not exaggerating. But, after that, I was fine. It really helped me a lot. I had to stop cold turkey (in hindsight I think that was a big mistake my doctor made in my part) when I found out I was 7 weeks pregnant with my daughter. I think it did me and her more harm than good. I've felt numerous times over the last 3 years that I really should be on something again, my PCP hasn't been too willing due to my other health/liver problems. She put me on Wellbuterin for a while, but I did not find that one as helpful.
 
My sister was/is on Zoloft - similar to Paxil. She said it worked wonders for her as well. Her doc did not take her off of it while pregnant like mine did. She tried Paxil recently and was too wired for too long - it freaked her out and she stopped taking it (my personal opinion is she didn't give it enough time, but she was freaking out over all the meds the doc had been Rxing her.)
 
My mother in law had issues and addiction to Prozac, by the way.
 
I know at least 3 other people who have had fabulous results w/paxil - it doesn't mean it'll work for you at all, your doc might promote something else, but a GOOD pain management/psychatrist/whatever doc (again a GOOD one) should be able to assess your health history and figure out the best med for you. 
 
Well, I hope that is some of the info you were looking for. :-)   I hope you sleep well tonight!
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/12/2005 6:48 PM (GMT -6)   
sad   sad sad
gee wiz...having GI probs with bad RA makes sitting on the toilet not fun!
very very bad day.  hadn't "gone" in a few days...so disaster was lurking.  had painful BM's for 3 HOURS.  fainted twice on the bowl from pain.  and am on strict liquids by Rx. sad    it might be a very bad inflammed area or a partial blockage as per symptoms.  if not better by tomorrow nite, have to go in for Xrays and stuff.
makes me want to prototype a reclining toilet for peeps with arthritis!
ya know!  how are we suppose to sit up for that long??
i had to bring a chair in to lean over it.
and then your back and legs...forget about it.
tummy seems to be in less pain now.  joints hurt bad.  BAD POTTY devil
hopefully this passes (literally and figuratively :-) )
at least i made it through the weekend though.
my potato salad was a hit!  honey is very happy!  next week's attempt is meatballs!
off to drink my dinner.
i give you folks dealing with RA along with CD or colitis  A LOT OF CREDIT!! boy is this rough!
 
here's to a better tomorrow
erin

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 9/12/2005 8:03 PM (GMT -6)   

Erin, I'm so sorry to hear of your trials...I remember when my issues kept me on the potty for quite a while...the things I did in the bathroom to keep me comfy! OY!

I hope this, as you say, passes quickly :-) what a rotten thing for you to be going through. I wish the doctor's would get off their own rears and TAKE CARE OF YOU!!!!!

Feel better.

Were you able to sleep at ALL this weekend? Lack of sleep can also affect the bowels....as well as everything else you are enduring! sad

**


 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/12/2005 9:42 PM (GMT -6)   
hey mamma!

i wish the seat was air inflated...like those adjustable mattresses! oy is right!
hey, are you in the black out? southern CA was bad eh?
right now, the distention and pain has remarkably gone down. i had an ensure diluted shake for dinner. then i had like 1/2 cup frozen yogurt....NOPE! NO GOOD...went right through. just stopped. I'm POOPED!
knees are killing me through this! wait till the rheummy gets a load of this!! he hasn't seen or heard from me since the colonoscopy! maybe NOW he'll finally believe me when i say, "the NSAID's make me sick!"

this weekend i didn't sleep saturday nite...but sunday nite WOW! it was so cool and quiet and it smelt sooooo nice! i do sleep much better @ my honey's. i think he has a lot to do with it! plus his mattress is kick butt! a sealy posturepedic?? and the air is so clear and fresh. i really want to move in!!! but, i have to get well enough to travel and drive and be by myself.
i think it'll happen definitely within the next 2 years.
hopefully married!
we bought a bunch of fall/halloween house things yesterday...was so cute. he dug the whole festive thing!!
i'm so glad you know what i'm going through!
i'm kinda happy it happened today and not over the weekend. i can make it sound more humorous talking to him over the phone when he asks "hows it going?"; don't want to worry him too much.
do you avoid all dairy?? i'm starving and don't know what to eat! thinking maybe a little peanut butter on a piece of bagel? hmmm
{{{{{{{{{ hugs }}}}}}}}}}}}

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 9/13/2005 8:02 AM (GMT -6)   
I do my best to avoid Dairy - I do have a tiny bit on a regular basis (like a slice of cheese on a sandwich) but, should avoid completely. I had a glass of milk a few days ago and boy am I paying for it the last 3 days! I've had to pull out the old preperation H wipes. sad   Serves me right! I need to just stick with soy.  I really should aviod everything in the Milk category - my weight issue is now an ISSUE....the weight came from the illnesses, now the weight is causing problems - my cholestorol is high and I need to avoid those things. My metabolism is messed up, my glucose is high.....I'm goign to be diabetic if I don't figure this out and start overcoming this issue.
 
Erin, I know you don't have money to spare, but maybe I was thinking since you are spending so much time on the throne, why don't you splurge a little and get one of those soft toilet seats? You know the squishy vinyl covered one? I know they don't last TOO long, but they may make your stay a little more comfy! I think Home Depot sells them for less that $20, but I haven't been in the market for a seat for a few years and don't remember for sure.
 
Erin, have you heard from your case worker yet? Anything from SDI at all???
**
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/13/2005 3:12 PM (GMT -6)   
redface  Oh what a nite! redface
I was on the bowl till 245am.  No solids at all since sunday nite. sad The good news is that the abdominal pain stopped, I'm still going (pure liquid) but has calmed down since 2 this afternoon.  I don't need any Xrays! yeah And later on I can have soft solids.
 
I do believe this episode through me into a RA flare though eyes .  Knees are very bad along with the ankles back and hands.  Everything is throbbing.  I was told that one disease exacerbates the other and vice versa.  Just plain ol wiped out.
 
Camama, I do have a cushy seat!  It still hurts.  I roll a towel behing my back and that helps a little.  But sitting up in general just is aggrevating.
Do you use Lactaid milk?  That's what I drink if anything.  Usually just to make hot chocolate with it, or mashed potatoes.
But you're right...I should stay away from cheese during episodes like this. 
You're having weight troubles?  I know...that's fustrating.
What are your restrictions if any?  Like do you have to avoid vegetables and fiber?  or can you have pretty much anything.
The reason I ask is because in college, I was a dance major...and boy was weight an ISSUE.  We gals came up with a diet that believe it or not IS ACTUALLY VEY VERY HEALTHY, it works, and works quickly.  It's a very boring diet...but when some gals had to drop weight it never failed.
Do you have a thyroid problem?  I bet a lot of it came from the prednisone monster! devil I couldn't believe how much weight I put on the first week I was taking prednisone (although the weight was welcome...the 10 pound gain got me to 100lbs.), but after I stopped it all went away.
If you're interested, I'll post what our eating schedule was like during crunch time.  It was basically a volumetrics diet.
My cholesterol is very high too...but that's genetic on my family.
Talk to you later
erin

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/13/2005 5:49 PM (GMT -6)   
yeah   yeah yeah yeah   I ATE SOLIDS!!!  WEEEEEHOOOO!!!!!  yeah   yeah yeah yeah yeah   yeah  
and they  stayed in!  hooray!

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/16/2005 2:58 PM (GMT -6)   
sad  it really stinks having to be in an acute flare in 2 places.  not only are my shoulder joints and knees on fire and PAINFUL...but CD is awful this week.
i put a split in my toilet seat from being on there too long!  LOL.
thank God I have enough steroids and pain meds to keep mr from going to the ER or doc.
stress is not helping at all.
can't wait to go away tomorrow.
need a dose of my honey. sad
this is really exhausting and i don't feel well.  hoping that as the days go by the joint pain will go away.
hope this passes soon

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 9/17/2005 12:07 AM (GMT -6)   

Man, Erin, I feel so bad for you! I get so mad thinking of you sitting there so sick and w/o the proper care. I want to call SDI and give them a couple of strangle holds and say, 'what the heck are you doin' sittin' on her case???!'

I hope you start to feel better and get some relief soon!

**


 


effie
Regular Member


Date Joined Mar 2005
Total Posts : 344
   Posted 9/17/2005 12:11 AM (GMT -6)   
I second that emotion!!!!!
Effie/Judy
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