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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/19/2007 7:16 PM (GMT -7)   
Hi All:

Well, yep, I'm in another flare. I felt so bad this morning when I left for my doctors appt I took my pj's with me expecting to be admitted to the ward. My PCM of course prefers to keep me out of the hospital whenever possible. So she's developed a plan for the week and if I'm not much improved by next Monday then I'll probably be admitted.

Last week my Sed rate and CRP were so so, today they were once again back in the ugly range. I'm having pain over my kidney on the right side and mentioned I noticed some blood in my urine. Had to give a urine sample and blood they certainly got. It looked like a small cup of cherry koolaid. Of course we're uncertain as to why I've got blood in my urine once again. She spoke briefly with my rheumy and mentioned that my CT scan of my belly showed that my blood clot is gone and I'd like for him to reconsider starting humira for my RA. He told her to have me make an appt to see him.

So the plan is to double my medrol dose. Up my pain meds, drink lots of fluids, get as much rest as possible, use the magic mary's mouthwash for the ulcers in my mouth and throat. She really doesn't care if I eat or not, but fluids are a total must, no dehydration if possible. If I continue to worsen during the week then there's always a doctor on at the ER. Of course, ER visits for me are a direct route to the ward. The ER staff doesn't want to deal with my "issues". My h/h, rbc, and wbc are all low and there was a mention that I may need a blood transfusion next week. My platelets are low but not critically, oh and I need to remain on blood thinners until January, then we'll talk about stopping them or not.

So that's my update, not looking forward to thanksgiving at all. I'm planning on just crawling into my bed and sleeping. I hope you all are feeling better than I am and can enjoy your thanksgiving holiday. Take care and be well.

Hugs,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/19/2007 7:48 PM (GMT -7)   
Oy.

Sounds like your plate is still overflowing....and not in a good way. Try to eat *something* even if it's just a piece of toast.....

I hope you at least have pleasant dreams during all that sleep...and at some point do feel refreshed.

On your side!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/19/2007 8:16 PM (GMT -7)   
(((((Barbara)))))

I'm glad you got a nice visit in Florida before this ugly flare. Good memories to cherish while you are mending. I hope you can stay under the radar of being admitted, but sounds like a good chance you'll wind up there. Sorry sis . . . sending you a bottomless pot of nice hot tea!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/19/2007 10:37 PM (GMT -7)   
I hope the steroid increase helps. Resting at home is always better than the hospital because at least at home you can sleep without someone coming in every hour or two to check your BP and temp. Besides hospitals are germ central and you don't need germ exposure on top of a flare.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Celebrex, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


Trying2BFree
Regular Member


Date Joined Oct 2005
Total Posts : 251
   Posted 11/20/2007 8:27 AM (GMT -7)   
Try to rest. Sending lots of hugs your way.{{{}}}
Jeannie 
SLE diagnosis 10/05 now changed to RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin ER 1500mg (PCOS); Loestrin BCPs (Endo); Methotrexate 15mg (RA); Metanx 5mg (RA); Orencia 750mgs (RA); Lunesta 2mg (as needed); Prevacid


Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 11/20/2007 8:59 AM (GMT -7)   

Barbara,
I'm so sorry you're in a flare.  You need some TLC and a few good books to keep you snuggled up on the couch or in bed to rest and get over this hump.  My prayers are with you.  {{{{ hugs }}}}}


Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Plaquenil, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Loratab ,Percoset, Toradol
 
There is no psychiatrist in the world like a puppy licking your face.
 
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/20/2007 2:19 PM (GMT -7)   
(((((((Barb)))))))), I'm so sorry you had such a nice time on vacation and than to come back to this. Yes it does sound like a transfusion made be in order. If so I certainly hope it helps get you feeling a bit better. I know sometimes it's really hard to find things to be thankful for. i hope you are getting some rest and that your med increase is going to start to help you feel better at least enough to try to enjoy thanksgiving a little bit. Please let me know if there is anything I can do to help.
Your in my prayers
love
carol
God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 11/20/2007 3:19 PM (GMT -7)   
Barb, I hope you are feeling better....Try and stay strong

Prayers.....frank
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES,  LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 11/20/2007 4:56 PM (GMT -7)   
Barb, you sweet thing, I'm so sorry you're not doing well. It's good that you realize you just need to go to bed and sleep for a few days. Do try to eat a little when you can. I hope the increase in your meds helps to make you feel better. I'll check in on you more often.

Hang in there. A little piece of pumpkin pie can't hurt.

You're always in my prayers.

Love

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 11/21/2007 2:36 AM (GMT -7)   
Barb,
  (((Gentle Hugs))) I hope you are sleeping well right now and feeling a bit better. Hopefully, the increase in pred will help a bit but, it sounds like the blood transfusion is needed soon. Please keep resting and take care. You are always in my thoughts and prayers.
                                                   Love and hugs, Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:Methotrexate,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folic acid,prednisone,lunesta,Chantrix,Tramadol,Nitro.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 11/21/2007 3:06 PM (GMT -7)   
Barb, I hope you're resting comfortably today and that you're able to enjoy Thanksgiving.  (((Hugs)))  Love, Butterflake

Dx: SLE diagnosed 2005, major depressive disorder, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone, prozac, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/21/2007 4:06 PM (GMT -7)   
Barb,
So sorry you aren't feeling well. Lots of (((hugs))) and hopes that you feel better and can manage to be home on the pred and feel good. Its such good news the clot is gone! Will pray that you feel better and that you and your family can enjoy the holidays somehow somewhere.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 11/21/2007 6:56 PM (GMT -7)   
Barb, sorry it took me a while to see your post. I'm so sorry that things have taken a downward turn again and that your labs are getting worse. Please take care of yourself and let other people handle everything, especially with Thanksgiving. You're in my prayers Barb.

Love and hugs
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 11/26/2007 3:22 PM (GMT -7)   
((( Barb))). So sorry to hear about this flare taking such a downward turn! I hope that you were able to enjoy your Thanksgiving holiday. Do rest up and I hope your docs can come up with a plan to get you feeling better. Take care,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 8mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/29/2007 7:54 PM (GMT -7)   
Hello:

I need to scream, may I do it here? I'm so so frustrated with being sick, I can't do this anymore. I can't handle another day of flaring. I called my doctor on Monday as directed to, she didn't call me back until Wednesday and I couldn't be seen by her this week. She had me see one of her colleagues, who determined I was way way dehydrated and needed to have 2 large bags of IV fluids. All of my labs look good except for my CRP, it's through the roof. Of and my cheeks are so red I look like Santa Claus. If I have one more person say "but your cheeks are so rosie looking" I may scream at them.

My doctors are back on one of there "We don't want to admit you, it better this way for you". We d@mit it's not better for me. I feel like I've been flattened an Amtrak Train at full speed. I'm hurting everywhere even my fingernails hurt. Why can I get a single break just for once. Plus I'm still waiting for my Judges ruling in my SSDI case. It's been 9 weeks today since I did the hearing. Why does God hate me so bad? What have I done to deserve all this crap? Ugggggggh nono nono nono nono nono nono I can't stand this I need something to go right in my life. I'm sorry I'm dumping on you all tonight, if I don't do it here, I'll take it out on my family and that not what I want to do. I don't want to burden them anymore than necessary.

Thanks for letting me rant and rave. I'm going to take some pain meds, plug in the heating pad and try to sleep. Thanks for just being here. I love you all and have a good night.

Love,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/29/2007 9:56 PM (GMT -7)   
Oh, dear...isn't it just so awfully miserable when it all piles up at once?

One friend of mine swears on egg throwing -- I hear that they make really great sounds if you go into the backyard and throw raw eggs at trees or on the patio -- might work better than the beat-the-pillow option, that has never worked for me.

I hope a good rant, some nice meds, and warm cozy sleep help you turn the corner and feel much better in the morning.

Thinking of you,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 11/30/2007 9:11 AM (GMT -7)   
((((((((Barb)))))))) Hang in there and know we are always here for you. You have to deal with more than any one person ever should have to deal with, so it's very understandable why you would get angry and sad and frustrated. especially since the docs don't seem to know what to do to help.

I hope the heating pad helps. I can't remember if you have an electric blanket or not. I just got one and crawling into it when I hurt feels like heaven. I like the idea of throwing eggs - that might be kind of fun. I'll have to tell my kids and hubby about that one - it might be a great way for all of us to relieve our stress.

Barb, you are always in my thoughts and prayers.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted 11/30/2007 11:57 AM (GMT -7)   
Hi Barb,
I was reading your post.I am sorry that you are going through so much right now. I have been there. You are in my thoughts and prayers!!!!!
Loving Life 

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