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Posted 12/2/2005 11:52 PM (GMT 0)
Okay, so this morning was the rheummy.  Yesterday was absolutely terrible & this morning was still near impossible too.  3 hours to put pants and shoes on?!

As hard as it was getting there, I'm glad he saw me in the condition I was in.

                                                  Got His Attention.

 

Starting Remicade after the Holidays.  In the meantime, taking Humira once a week and then possibly more frequent  (ouch).  And also adding a sulfasalazine and/or Immuran (depending on what the GI and rheummy agree upon).

We want to hang on to the few WBCs I have...so they wanna be careful.

 

Have a pain specialist appt Jan.4th.

 

It's sad but it took a day like yesterday to really tick me off.  It was totally unacceptable, and I told him that too.  9 hours to get into the shower? 12 hours to finally make it to the kitchen to eat?????  That's really bad.

 

So the fire under their bums has been lit  devil  .  Just wish it didn't have to take THIS to do it.  But, I guess when you're real young and so many things are wrong with you...maybe they really don't know what to do with ya'?  Maybe I'm one of those patients that docs are afraid to touch!

Like my good buddy, he's got end stage renal failure and is really obese...no one wants to do surgery on him because they want nothing to do with it!  They're afraid to go near him.

With all these malpractice lawsuits, I'm really surprised doctors do half the things they still do!

What a week.

Erin  

Posted 12/3/2005 12:31 AM (GMT 0)
:-)  Wow, I just don't know what to say... Glad that you finally got their attention, but like you said, it stinks that it takes such drastic measures to get results!  How are you feeling today?  Do you have plans with your honey this weekend?  I remember you saying that he was bummed out 'cause of the bad week you'd been having... I hope you get some rest and get to spend some quality time with him, I know that always makes you feel better!  Good luck to you always, and keep on them! - Duck yeah
Posted 12/3/2005 3:12 AM (GMT 0)

Wow, I hope that fire continues to burn their behinds. I'm glad you made it in, I'm sorry you had to be in such a rotten state - but if that's what it takes to get help, then so be it. I just hope you have enough energy for the weekend and see your man.

Good luck! I had very good luck with sulphasalazine...I hope you get the same. Will you stop the Humeria once you begin Remicade? It's too bad they can't start you on that NOW. I got amazing results 48 hours after my first infusion.

**

Posted 12/3/2005 7:27 PM (GMT 0)

Thanks gals!

You guys are the best.  Still feel drained, slept for 13 hours!  Whoa!  Yep, mustering up enough gusto to go to an Anniversary dinner tonite. He sounds better.  So hearing my honey's voice sound happy again makes me feel better too.  I did have to lie a little and say I feel good....but it's worth it.

I'm doing the Humira's weekly (or every few days) up till after the Holidays (he wants to wait till after new years to start the Remicade) ((so i don't have to worry about all that till after the holidays)).

Just looking forward to tonite and getting away for 2 days in peace.

All clogged up though!...must have picked up someone's bug while coming home from the docs.

Going to try to get into the tub now!  Hopefully I'll shave my legs too!! LOL

erin 

 

Posted 12/3/2005 11:14 PM (GMT 0)
Shave mine while you're at it! hee hee hee... Hope you have a good time tonight and take it easy... Let your honey spoil you this weekend and get some good rest!
Posted 12/4/2005 1:41 AM (GMT 0)
Erin Hi,

I can relate to what you are going through I told my Mother just today that it was just pathetic that at 65 she could sdo circles around me.I got down on the floor to clean a bottom shelf and my Mother had to help me get up because I could not so on my own.

And yes it takes me awhile to get moveing my own self that is one reason that I try to get all of my appointment's in the afternoon because I just can't get out of bed and get a shower in less than an hour like i use to do.Infact I'am so stiff in the morning's that I useraly have to have some one to help me to where I can at least set up and the it's another thirty minutes are more before I can stand and that nearley kill's me so just wanted you to know that you are by fare not along.
Posted 12/4/2005 4:46 AM (GMT 0)
have fun and don't over do it tonight.

:-)  

Posted 12/4/2005 8:23 PM (GMT 0)

Curley thank you...boy do you know it!  Even like last night, couldn't enjoy my **** food cuz I couldn't cut it!  It's just so so hard and EVERYTHING is an EVENT!  I just really pray that with the larger doses of Humira, the new meds & starting REMICADE in january..that I will at least be able to get through a day "normally" or I'll take even "halfway normally".  Been going on too long and I am SICK of it!  I'm desperate and I'll take anything remotely better than right now, ya know?

Duck...I did shave my legs! yeah Had to sit to do it!!  But it was a good one!  LOL.

Really had a nice time.

Enjoying the sunday.

Take care

:-)  

Posted 12/12/2005 3:40 AM (GMT 0)
Well at least you do have a since of hummer.I do hope that you will get the relife you need.I hate to see any body in pain I don't even wish this on my worst enamie (ex-husband).

I take Humira don't know how much longer that I will be on it because as of the first of the year my insurans will not pay for Humira and they also will no longer pay for pain meds either and my pain med's is a $100.00.

I guess that we can thank the people that has abused the system.and we rhave to pay the price because of the's people.

I do hope that you can at least get dressed with out taking 12 hourer's to do so.Keep us posted on how you are doing.
Posted 12/12/2005 4:27 PM (GMT 0)
Thanks Curley,

Past few days, have been getting dressed OK...of course it takes a LONG time to do it.  Putting on a coat is getting very very hard, (ah, but chivalry pays off in this department because now my honey constantly helps me with my coat!).

Using my hands is difficult, Wed. Thur. Friday Saturday & yesterday were painful.  So i just hope something works soon, whether it the higher doses of Humira or Remicade....Something!  Anything!

 

Take care

erin

Posted 12/12/2005 6:29 PM (GMT 0)

Erin, I am so hopeful you will get relief from Remicade and can tolerate it long term. It worked wonders for me when I was on it - 48 hours from first infusion and was already showing signs of relief! I kid you not! Before I started it, I met a girl on it for Chrons and her life did a complete 180 for the better on it.

Curly, speak to your doctor about getting help/funding for your meds to apply to. They are out there. I know Remicade has a fund that helps out people w/no insurance and I thought the other 2 biologicals do as well.

**

Posted 12/13/2005 4:11 AM (GMT 0)

Thank you so much Camama for the encouragement.  It gives me a lot of faith to hear of people doing well on it.  So I'm curious to hear what my rhuemmy & GI have discussed.  No one called me back as of yet.  I'll call wednesday if I hear nothing by then.

Taking the Humira every 4 days...ouchie!  My tummy is getting a little bruised.  Tomorrow I have a few things planned...so this will be a "test" to see how my joints and body hold up since being on more potent doses.

Here goes nothin'!

Posted 12/20/2005 6:18 AM (GMT 0)
Ick, still trying to fill out these appeal forms.  Slowly but surely.  The Humira every 4 days has helped a lot with the fatigue..but not the pain.

So I'm up MORE...in PAIN!  AAAAAAAAAAAAAhhhhhhhhhhhhhhhhhhh!!!!!!!!!!!

What a cruel cruel trick.

Posted 12/20/2005 9:03 PM (GMT 0)
So what is the doctors plan for the pain? Didn't you say something about going to see a pain management doctor? Hope you feel better soon! - Duck
Posted 12/20/2005 11:41 PM (GMT 0)
Yep, have a pain management specialist appt.  january 4th.  I've worked with him before and have seen him as a patient last year.  He's good with arthritics.

He was like, "Cool, the darvocet works for you...keep on it!"  But, it's not doing the trick anymore & I don't want to masacre my liver with all this acetominephin.  So I'm thinking he'll put me on an MScontin or extended release morphine type med and then keep the darvocet as an extra...or vice versa and use an oxycontin as a breakthrough med.

But I am thinking I need preventative pain relief.  Because I'm ALWAYS in pain...tolerable yes....but when it hits it's peak, forget about it!  To the ER I go getting bolused with dilaudid every 45 minutes.

If I'm functioning better with round the clock meds, then that sounds like a game plan.

If he does spinals and stuff I'll do that too, but I don't know if that stuff works for RA pain.

In the meantime, I keep well inebriated on weekends tongue and do my best during the week. Hah!

Posted 12/22/2005 10:20 PM (GMT 0)
You will let us know what he says... right?
Posted 12/23/2005 4:36 AM (GMT 0)
Hey Duck, thanks!  I had an appt. with my primary today....he even said it was a GREAT idea to go back to the pain doc.  I asked for suggestions on meds, he said oxycontin or mscontin or some extended release stuff....(exactly my thoughts).  I also ran into a friend of mine, he's an M.D. (I know too many doctors!), and made some calls for a PT for me.  So that was nice.

This is so weird...I have all these close friends who are MD's....yet MY doctors I see as a patient are all fly-by-nights!!  Geesh!!  confused Maybe I should hand myself over to my friends! hah!  eew....yeah, examine me & then go for drinks. Oy!

LOL

Posted 12/23/2005 2:07 PM (GMT 0)
Maybe you should... you MD friends may take better care of you... :) And maybe cheaper for you too!
Posted 12/23/2005 2:55 PM (GMT 0)
One thing is for sure....they definitely "see" a lot better as to what is going on with me.  If anything, I should have one of them come with me to an appt.!  Because they've seen me before this, and slowly decline...and quickly decline even more.

The ONLY time I ever called on one of my friends was when I needed a Spinal Tap. eyes I was petrifried, and trusted NO ONE but my one buddy (a neurologist). 

Other than that...I feel things would get too complicated you know?  I don't want anyone to feel badly if something should happen or if I take a turn for the worse...look @ me, worrying about other people! Hah!

They come in handy when ya got a cold and need an antibiotic or something!

Or when you really DON'T WANNA WAIT IN THE ER!  LOL.  "Direct Admission please".  Bad enough all my girlfriends I went to school with are working the ER!  LOL.

Given the small city I live in...it will not be long before everyone has seen my butt crack at one time or another. VIEW IMAGE Erin

Posted 12/24/2005 8:05 AM (GMT 0)

Oh Erin, you are too funny! May your spirit stay strong until you get the treatments you need to feel better. I love the butt crack comment, that is hilarious.

Take care. I hope you are well this Christmas weekend.

**

Posted 12/24/2005 3:06 PM (GMT 0)
Maybe your MD friends could at least talk to the doctors that you see now.. sort of give them a "behind the scenes" so that the dr's you see now know that you're not "faking" it... know what I mean? And girl, keep that butt crack covered! :) hee hee hee
Posted 12/24/2005 3:29 PM (GMT 0)
oh my docs know i'm not "faking" anything! i've more weird labs and mris than anyone they've seen! it's just that i'm complicated and it's not just ONE thing...i've got many many NON-Related things going on, which therefor complicate the others...blah blah blah....it's a matter of docs not knowing where to start first.
i need a dream team! lol. but my friends always stand up for me when needed. it's that 15 minute speed session that ya get at appts which is when you really get nowhere, ya know?
{{{{{{{{{{{{ hugs }}}}}}}}}}}}}}}}}
Posted 12/29/2005 11:11 AM (GMT 0)
Hey Erin,

Saw your post about starting Remicade soon. If your dr suggests Imuran, take it. per my gi, it enhances the effects of the Remicade. I am on both and no problems with either. However, it takes a good 3 months for the Imuran to get in your system. Good luck, Susie
Posted 12/29/2005 8:18 PM (GMT 0)
thanks Susie! that's very encouraging. pretty soon i'll be hearing what my next move will be regarding treatment. taking the humira every 4 days, i'll even be willing to keep at that for another month or so. but yeah, remicade is to follow that if no success.
thank you so much for your info and concern!
erin
Posted 1/11/2006 11:18 AM (GMT 0)
Friday there will be talks of whether the Humira we should stick with for another month or so, or start the Remicade asap. Oy!

hangin' in there still.

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