A Rheummy Appointment Gone Bad

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erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 1/15/2006 4:46 PM (GMT -7)   
I'm sure this will be a good laugh to some folk & hopefully brighten spirits of others as well. 
So Friday I saw the rheummy.  Was to have the dreaded intrarticular knee injections.  I grab my "I'm gonna put this thick sweater across my face and scream into it" security blanket and grin through the process.  First of all...he had a darn cast on his hand!  "Are you sure you wanna do this?" I ask.  Broke his hand or something.
THE INJECTIONS WERE AWESOME!  He did them better this time around than the last time (agony)...but this time a piece of cake.
So here Erin is all happy that it wasn't too bad.  Pack my crap up...waiting to pay....talking to the girls in the office...getting out the checkbook.
                                                                                         Then IT happened.
Pen & checkbook dropped...hands went numb....no speach....was REALLY freakin' weird man!  THEN BOOM!!  Went down for the count.
On the way to the floor, got my lip something good on the counter...nearly killed the medical assistant passing by...& got a nice case of rugburn on  the side of my face.
                                                     BUT OF COURSE YOU HAVE NO IDEA NONE OF THIS IS GOING ON.
How embarrassing.
Finally came about.  And of course, humor being my coping mechanism I say, "Doc...these prices are outrageous, ya gotta do somethin about that."
So yeah, I had a spaz @ the docs.  I was thinking that my fat lip would be sexier than it really is....darn!  Not nearly as Angelina Jolie as I wanted.   Time for an EEG?  uh oh.
Haven't had a seizure episode in a long while.
Next appointment on the 6th.....planning on showing up wearing a helmut! hah.
Here's to never a dull moment!
Erin

missie1227
Veteran Member


Date Joined Nov 2005
Total Posts : 751
   Posted 1/15/2006 4:55 PM (GMT -7)   
erin this is awful...i suffered from sezuires also. but never had one out in public, mine usually end  up at home while on hte toliet or something not as nearly as glamous as yours i am sure.....
 
time to go to the nuerologists ofice and do a eeg onyour head and Qeeg
 
do you remember waking up from it?
how long were you out for?
was it med related?
was it anxiety related?
hope you will be okay erin
they usually give depakote or tompamax for it, me-i cant take either one fro the side effects
 
HERE IS A NO NO
NO CAFFINE/COFFEE, NO BOOZING, NO ASPARTEME, NO CHOCOLATE these all affectg your brains and can bring on sez
9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA/AS in dec 05. SSI approved after 2.5 yr wait. sezuires, CTS, etc. on norco, xanax etc.


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/15/2006 6:40 PM (GMT -7)   
tongue  Oh Erin - Honey I don't even know what to say.... it's a good thing you have such a wonderful sense of humor.... yeah take it easy Angelina! LOL tongue - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 1/15/2006 7:42 PM (GMT -7)   
Boy Erin,that was some doctor visit.I must say you handled it very well considering.If that had been me I would be looking a hole in floor that i could hide from.But I'am glade that you are ok.
Thanks
Curley......
a.k.a.Mela...........


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/16/2006 8:51 AM (GMT -7)   
Thanks.  I could imagine it's probably scarier for others around witnessing it.  I know I'm OK...but it most likely freaks people out I'm sure.
The last seizure I had was Xmas Eve in the car (wasn't driving of course).
And before that was early summer @ my honey's. Got up to go the the loo, then about 4 minutes later I went to lift my arms to put my hair in a bun...then went into a seizure.  for like no reason!
They come on real quick with some warning (I know when it's gonna happen & can usually get myself "to ground level" in time. USUALLY)
Just partial complex seizures.
Was on depakote, depakene, Lamictal, etc....but what I found out that really has almost got them under control is plain old diazepam!  
Because of the chiari malformation I developed seizures.  But other than that...I typically do not have them on a regular basis. 
As long as I don't get hurt or hurt anyone else, it's more embarrassing than anything. ESPECIALLY IN PUBLIC.
erin 
 
was even thinking that by being on these TNF meds for 2 years, they might be aggravating the seizure disorder.  it does say " use cautiously with nervous system disorders" but i never paid attention to that.???? so who knows.

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 1/16/2006 10:01 AM (GMT -7)   

Oh Erin! I'm so glad you're okay aside from the fat lip. How awful. That is curious about the biologicals. Now that you're on Humiera every 4 days.... I wonder.

I'm glad you have a good sense of humor about it all, but what a drag to have to deal with that as well as everythign else. Was this brought on because of the untreated Lymes?

**


 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/16/2006 10:30 AM (GMT -7)   
Hah!  That's what makes my case so darn complicated.  No one knows who/when/where/why.
From the CDC in 2002...they tested the Lymes bacteria in my blood and tissues and found a mutated strain.  eyes Also, they detected that given the damage, I must have had it undiagnosed for about 10 years (which fits the bill for when I was 12 & went camping and then came home with fevers, headaches and joint pain).
Started having seizures when I was little (so the chiari, I could have been born with).
The neuroLymes on top of the chiari of course made the seizures worse I'm sure.
At 16 years old I started showing positive for RA.....BUT WAS TOLD TO IGNORE IT!!
And NOW....having gone so long with untreated RA, THAT'S HARD TO TREAT TOO!!
So in 14 years the ONLY conclusion the Dr.'s can definitely concur with, is that the RA and all the systemic complications was caused by the untreadted Lymes.
The brain malformation might have been a result from neuroLymes...but highly unlikely.
  skull In all...my body's a disaster! skull
THE WORST was when I had a seizure ON A DATE!  mad   I wanted to keel over & be done with!  He was cute too...a cop...nice time.  I almost put a hole through his wall as I fell head first into it.  tongue If i didn't laugh at myself....I'de be nuts by know.  It's the only way to get through this. 

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 1/16/2006 10:42 PM (GMT -7)   

Oh jeez, on a date! You're too funny. Your spirit certainly is contagious, thank you!

Well, I am still praying you get SDI shortly and this insanity can finally have a least a little peace of mind for you!

Hang in there, we're all rooting for you to get that check in the mail soon!

**


 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/17/2006 11:54 AM (GMT -7)   
Thanks CaMama, you're the best.  I have no idea how long this appeal will take.  I hate being like this.  I really do.  But I am figuring that I will have to do another appeal after that.  Oh well.  I've got a pulse! at least!  tongue LOL.  What more can I ask for? LOL.
Oh gosh...over the weekend (you know you've had it when ya pass this comment)
I said when asked "how are you doing?"....
                         ..."oh fine, any day above ground is a good day isn't it?..."
Now...if I can get to shower today, NOW THAT'S A GOOD DAY! tongue
 
Still cannot walk on this right knee. sad Hurts bad.  Swollen, bruised and painful. sad Up till 430am with it throbbing.
Looking @ the brighter side of this situation....being in the condition currently in...I have no pressing obligations! So I suppose it's OK to be up till 430am.  Although I think I'm ticking my cat off. tongue I keep her up! She's probably thinking, "leave me alone already & go the **** to sleep woman." tongue Wow...is that low when you become bothersome to your pets?
If God had not given us laughter...oh where would we be?
Thanks mama for all of your support.
BTW...how's your daughter doing?
erin

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 1/17/2006 10:50 PM (GMT -7)   
Oy - which is worse? when you notice you are bothering your pets or you actually hear them cursing you?  tongue
 
Double OY! - What a month! First my daughter had the tummy flu the week before Christmas. THEN she starts in on one of her "spells" a week later. The first 2 weeks of this month were AWFUL -she was impossible! THEN on Friday, my son suddenly gets very ill - dizzy, high fever. I take him Sat for 103.4 fever. Can't find anything that requires med. Sick all weekend (he always picks holidays to get sick, isn't that nice?) wakes up again this morning with 103.5 temp! Spend another 25 bucks to find out it still appears virul and have to ride it out unless he's still spiking these 103 numbers and have to spend MORE money to take him in at end of week and get blood drawn (yeah, he'll like that!) to check for other problems. THEN my daughter comes home from Kindergarten today saying her mouth hurts, her belly feels like it is going to explode, and she can't feel her hands! The girl who rarely gets fevers, has one of 101. Now both my babies are sick, feeling miserable and can barely move. In fact, I just heard my daughter coughing up a storm in her bed....they have medicine in them, vapor patches on, and the humidifier going. sad   I feel SO bad for them!!!!!
 
Hang in there, Erin! :-)
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/18/2006 6:01 AM (GMT -7)   
Oh CaMama, your poor babies... {{{{{[[[[[(((((HUGS FOR CAMAMA'S BABIES)))))]]]]]}}}}}
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 1/18/2006 9:22 AM (GMT -7)   

Thanks Ducky! I hope you are doing well. By the way, I loved your Enbrel talk to Black Jack - it makes me anxious to start it!  :-) I still have some blood work to finish up and don't see rhuemy until next month.

My son, appears to be a lot better this morning, he hasn't been up long. My daughter kept him and I up (they share a room - by choice) from 2:30 - 5 a.m. this morning. She spiked up at 103. I don't think she's EVER had a fever that high.  Lucky for me, son slept in until 8, giving me a chance to catch up a bit. Daughter still snoozing away, poor kid! sad

Erin, I hope you are having a good day today!

**


 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/18/2006 9:31 AM (GMT -7)   
..."hang in there erin?... confused
HANG IN THERE CAMAMA rather!...sheesh!  what an ordeal with the kiddies.  i hope all is OK.  never ends for you!
 
today's still the same. knee and shoulders had me up again till 400am. redface can't complain...the Travel network was very relaxing @ 230 am with Hawaii as the topic! rain isn't helping.  sad seeing the GI dude this afternoon. 
he can either run the Remicade or my rheummy.
GI has rights in the hospital a block away from me...so i think i would rather have him run the show...less travel for me.
 
i'll be happy if i make it into the shower and get to my appointment.  that'll be a successful day for me.
 
hangin' in there.
erin

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/18/2006 9:32 AM (GMT -7)   
Hey CaMama, glad your kiddies are getting some rest... that will help them fight the virus they have... it's awful when our kids are sick isn't it?  sad I always feel so helpless.. Hang in there!  And don't you get sick either!  Glad you liked the post for BlackJack, it was a bit wordy, but I looked back over it and there is really nothing I can edit out.. it's a lot of info that I wanted him to know... The only thing I don't like about the Enbrel is the shot itself.. that mother burns... sad But once it's done, I'm groovy!  yeah
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/18/2006 9:40 AM (GMT -7)   
Hey Erin!  What time is your appt this afternoon?  You guys have rain up there?  It is windy windy windy here...it's awful... had to take my dog to the vet today, she's not gonna be happy with me when I get her home... sad Let us know how your appt went ok? 
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 1/18/2006 10:41 AM (GMT -7)   
:-)  My reply to Erin and Black Jack were both wordy! What can you do when you got lots to say on a soapbox? ha ha!
 
I'm somewhat used (at least as much as one can be) to my son getting high fevers, it's awful, but he does get them very easily. The long lasting ones are tough as he typically got severe 24 hour ones mainly.  My daughter on the other hand, rarely gets very sick and when she does, it usually goes to infection status. Even so, she does not get high fevers like this. She just woke up and was almost at 104. She doesn't even want to get out of bed - even to watch TV (and she'd watch tv 24/7 if I let her!) To watch her go thru 2 bad flus in one month is awful! She didn't break a fever with the stomach flu until the very end - it was very mild, lasted 4 hours, and it kicked the bug right out of her!
 
I do feel very helpless. I had a bunch of appointments today and just canceled them all per her request that I stay home and take care of her instead of Daddy doing the task (and she's a big daddy's girl!) Isn't that sweet? Wants to get me sick instead of Daddy? Just kidding. tongue
 
Good luck today Erin. I hope the GI gets you going w/Remicade. Since you need it for CD as well and he's closer, you'd think only a jerk would deny setting you up with the points to why he'd be the better choice! My fingers are crossed for you to have a great appointment today!
 
**
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/18/2006 10:55 AM (GMT -7)   
What a sweetie... always makes me feel good when they wanna be with me when they're sick... don't know why, just feels good... :) Hope she starts feeling better soon
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 1/18/2006 6:52 PM (GMT -7)   

It DOES feel good - and I have to admit, as much as I grumble at 3 a.m. when she screams "MOMMY!" every 23 minutes and I wonder why can't it be "DADDY!"  every now and again - I know deep down, I'd be getting up anyway worried AND hurt that she did NOT call me! tongue

Erin, how did today go?

**


 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/19/2006 4:57 AM (GMT -7)   
Yup, I'm right there with you! I'm the same way :)
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/19/2006 3:44 PM (GMT -7)   
Hey all,
 
My GI appointment went well.  It's nice to have a doc who actually KNOWS what he's doing!
My rheummy was wrong wrong wrong with the Imuran. (Straydog...you were VERY RIGHT by the way)  Said that with the dose rheummy had me on...it would take like a year to get to a therapeutic level! LOL. Oh boy....NJ doctors are THE BEST eh? Oy!
So anyway, GI upped my dose of Imuran and told me TO WAIT until at least the springtime to start Remicade.  Taking the Humira every 4 days plus Imuran is a pretty strong combo...and a realistic expectation to notice some improvements is to look about March.  He was totally honest with me.  I really respected that.
And it made sense to me.  I mean....my RA is CRAZY out of control because of it being neglected for so long.  So for it to get IN-CONTROL will take some time as well.  He would really like to see me stay on this combo until Spring and then if I am still not making the progress I want....to then add MTX to the combo.  THEN start Remicade.  That's what he would do if he were me.
I trust that.
He was informing me on all this stuff that the rheummy failed to mention!
I think I want a new rheummy! LOL.
I'm beginning to believe the rheummy I see now doesn't deal much with RA let alone a person my age with complications and advanced disease.
So there's the game plan & I do feel good about it.
I have nothing but time right?
I've been waiting years and years...what's a few more months?
Oh...to prevent my obstructions....he Rx miralax and stool softeners.  I run into a lot of trouble.  Not having a BM for like 10 days...THEN AWFUL PAIN....vommiting, cramping, passing cobweb like things out my rear & then that put my joints into a flare as well...then all h*ll breaks loose on day 11! 
IT BY NO MEANS IS A BOWEL MOVEMENT...IT'S A REVOLUTION! LOL
i need a vacation.

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 1/19/2006 10:04 PM (GMT -7)   
tongue  You're too much!
 

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