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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/14/2008 5:13 PM (GMT -7)   
Hi All:

It's been awhile since I've posted. I've been really struggling with how I'm feeling. Then today my darling daughter had to have her four impacted wisdom teeth removed. Because of serious anxieties for Nikita her surgery was done in the main operating room, with full blown anesthesia and a breathing tube. We started our day at 9 am and just arrived home about 6:30pm. She's spitting up a lot of blood, but I was told this is normal.

I've made a nice nest for her in my bed next to me. We'll both stay here for the next couple of days. Dad will have to find somewhere else to sleep LOL. Anyway, as you know it's hard managing taking care of just ourself, let alone a sick child. So I'd appreciate prayers, positive energy etc just so I don't drag myself any further down the slippery slope.

Thanks and for those of you are aren't feeling to well, I've seen your posts and I'm praying for you. For those of you who are feeling well, may you continue to do so. Thanks for being here for me.

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


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/14/2008 5:39 PM (GMT -7)   
((((( Barbara & Nikita )))))) bless her heart and yours. We've missed you on the boards but understand what you've been through. Take care of yourself and Nikita. You and your family are in my thoughts and prayers. hugs and love
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/14/2008 5:45 PM (GMT -7)   
Hi Barb, I was going to post about prayers for nikita but I thought I should use caution since she is a child and knew if you needed us that you would request help. So you bet I will be praying and have possitive thoughts. I know it will be a rough couple of days but hopfully it won't last long. Try to rest while she is resting. It's good to have this over before she starts school.
tell Nikita I hope she feels better real soon and enjoyed nesting with momma!
love ya
carol
 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 8/14/2008 6:11 PM (GMT -7)   
So glad that this stressful surgery is mostly behind you now, I know both of you have had a lot of concerns around it. I hope you both are able to get some restful, restorative, healing sleep tonight and that tomorrow will be a great day!

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/14/2008 6:44 PM (GMT -7)   
Hi Barb,
 
You and Nikita are definitely in my prayers too.  Your "nest" sounds very comforting and restful.  I hope you both get a really good sleep tonight and feel better tomorrow.
 
lots of love
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 8/14/2008 7:11 PM (GMT -7)   
Greetings Barb! My prayers are with you and Nikita tonight and always! Sleep well and allow your body to heal.

(((Healing Thoughts and Prayers Comming Your Way)))
Prayers,
Audrey Ann
 
Lupus, RA, and (Maybe) Fibromyalgia and LOTS of Medications!
 


 


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 8/14/2008 7:19 PM (GMT -7)   
My thoughts and prayers are also with you and Nikita.
Sj

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/15/2008 7:51 AM (GMT -7)   
Barb, I think about you every day. I hope this time with Nikkita cuddled up with you will be comforting rather than difficult for you. When Sarah had her tonsils out we spent a week together, both sick, but together and it was a special week for me. I will be praying for both of you and send lots of positive energy your way. You are so fortunate to have a close relationship with your beautiful Nikkita. How are you feeling? Still as bad as before? The last time I read one of your posts you sounded seriously depressed and ill. You're always in my thoughts Barb.

Love you,

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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/15/2008 10:16 AM (GMT -7)   
Hi Barb, I called your cell but couldn't reach ya. I hope last night wasn't too rough on you two. Come to think of it Where did hubby sleep last night confused .
love ya
carol
 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 8/16/2008 2:46 AM (GMT -7)   
((((((((((((( Barbara and Nikita )))))))))))))))))))

Prayers and hugs sis !!

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, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/16/2008 7:18 AM (GMT -7)   
Barb, I hope you and Nikkita are getting along ok. I have a picture in my mind of the two of you cuddled up together. Take care.

Love,

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


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/16/2008 7:33 AM (GMT -7)   
Hi Patty, Rosie, Carol, Sj, Audrey, Ginny, Lynn, and Stacie:

Thanks for your prayers and positive energy. I think that they are certainly helping. Nikita is doing really well. She's only taken her Codeine three times since the surgery. I'm making sure she gets her Motrin every 8 hrs. She's not real happy about taking that but I think it may help with her swelling. When you look at her, her little face is pretty swollen on the right side, the left isn't to bad. However, she says she has more pain on the left than the right. She managed to eat a milkshake last night, and I made her some mashed potatoes and those seemed to go down well. She's pretty much sleeping the whole day, but I'm sure the sleep is good for her, it's healing her.

As for me, well I'm here. I'm not feeling the greatest but I won't give up and I'm just staying snuggled with up Nikita in bed. Carol, hubby has slept in the guest room for two nights, he commented on how much firmer that bed was, and how it made his back feel better. I threw out the offer that he could move there permanently LOL. Ginny and Carol I know you both are having a really hard time. I'm keeping you both in my extra special prayer requests. Of course the rest of you are always in my thoughts and prayers. I hope you all have a nice quiet, stress free, pain free day. Thanks again for being there for Nikita and I.

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


Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 8/17/2008 9:30 PM (GMT -7)   
Barb,

I hope you notice how many people love you and are always praying for you. You are one special lady and deserve every bit of special attention. I know you and Nikita will do just fine. God's blessings on your little girl and upon you yourself. Take it easy and rest well.

Love and Hugs,

Linda
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 8/18/2008 5:59 AM (GMT -7)   
Hi Barb and Nikita. I just wanted you to know that I love you and am praying for you. The cuddle nest sounds absolutely perfect! Love, Butterflake

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea, hypertension, IBS Tx: CellCept, plaquenil, prednisone, lisinopril, actos, lipitor, nexeum, prozac, seroquel, celebrex, actonel
prn: arthritis tylenol, neurontin, promethazine, ambien.  multi vit, C, flaxseed oil, acupuncture
Donna
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/18/2008 9:04 PM (GMT -7)   
Hi Linda and Donna:

Thanks for the replies. Nikita is doing alright. She still is refusing to take the codeine, says she doesn't like the way it makes her feel. I think she'd be up and moving around more if she were to take it. For now though she's taking her motrin every 8 hours. She's pretty much stayed in bed since Thursday. I managed to talk her into the shower, I sure the sponge baths she was getting wasn't the greatest. Her swelling looks much improved today. She currently eating a very ripe banana, she managed to get down of chicken noodle soup this afternoon. I sincerely hope tomorrow is the turning point and she's up out of my nest and is feeling much improved.

As for me, I'm struggling, I really don't feel to good. I very fatigued and my joints are hurting quite badly. Of course, I had a procedure done the week before last. My thumbs are really sore from where the dermatologist removed the growths on them. I have an appointment on Wednesday to see a surgeon to look at some growths that I have. I'm thinking I'll be having surgery in the near future. I don't see my Rheumy until the 8th of Sept. and my PCP on the 10th of Sept. I sincerely, hope that I start to feel better before then. I'm certainly not looking forward to feeling like doggy do do until then. Of course as always thanks for your thoughts and prayer. You are all in my thoughts and prayers and I honestly don't know what I'd do w/o my Healingwell family. See you later and please take care all.

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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/19/2008 7:08 AM (GMT -7)   
Barb,

When Sarah had her tonsils out in January, she too refused to take codeine for the same reason. But she healed just fine.

I'm sorry that your struggles with pain and fatigue still continue and that your continual waiting game with the doctors never seem to stop. Are you still able to stay in bed? Just because Nikkita is up and around, I hope you're still resting and taking care of yourself. My sweet friend, I hurt so much for you. Thanks for staying in touch with us.

Love,

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


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/20/2008 5:51 PM (GMT -7)   
Hi All, and Patty:

Thanks for the well wishes Patty. I'm sorry I must have worded things wrong, Nikita's not up and around. She's still sleeping in my bed. She saw the oral surgeon today and he said he wasn't surprised that she's still having a lot of pain. Her teeth were so impacted in the bottom jaw that they had to cut the bone to get the teeth out. Needless to say she's meant to have a lot of pain. Since Nikita is refusing to take the codeine every 4 to 6 hours, she's making do with motrin. I think that since her pain isn't well controlled that partly why she's not healing well.

She also saw her Peds Doctor today. She ordered a bunch of labs for Nikita. She's been complaining about her joints hurting, her muscles are hurting too, and she's very fatigued. The fatigue is more than just having the teeth removed. I took her to the doctor in May about the fatigue and they kinda blew me off at that time. According to her doctor Nikita stands a very high risk of having some form of an AI disease. It may not be lupus but according to her because of my lupus, she is genetically at risk. So they took 7 vials of blood from Nikita and a urine test. Nikita has a positive ANA of 1:640 so I'm anxious to see how her ESR, CRP and RA factor are. She's also testing Nikita for mono and EBV. I hope all is well with her.

As for me I'm totally wiped out tonight. We left for the hospital at 9am and didn't get home until 5pm. Nikita went straight to bed and is still asleep. I was hurting a lot and took my pain meds, about 15 mins after taking them I became nauseated. I ended up vomiting all over the toliet. I've not eaten today, so I'm wondering if that was the culprit. I normally can take meds on an empty stomach. Please pray that I'm not getting the stomach flu. I hate to vomit, and I'll gladly say thank goodness for my hubby, he cleaned up the bathroom for me. I'm gonna take something for nausea and go to bed. Hope you all are feeling alright or as relieved at you possibly can be. I'll be in touch. Have a good night all.

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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 8/20/2008 6:38 PM (GMT -7)   
((((((((((( Barb ))))))))))) (((((((((((((( Nikita )))))))))))))

Oh no! I hope her joint pain and fatigue is from an infection which can be easily treated . . . and not this dread disease. I can't think of anything worse than watching your child go thru hard times. Prayers for you and Nikita sis!! Will be watching for updates.

I know that this emotional stress can be harder on us than the physical stuff . . . so be very careful how you process all of this stress. You might think about visualization . . . like literally giving all the "junk" to God. Keep us posted!!

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, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/21/2008 7:36 AM (GMT -7)   
Barb,

I'll be praying for positive results as Nikkita's blood work comes back! You need for her to be healthy! The flu might be the best news you've had in a long time. Rosie couldn't have said it better. Keep us posted!

Love,

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


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 8/21/2008 7:50 AM (GMT -7)   
Barb, you and your daughter are in my thoughts and prayers.

Hope you have much happier days ahead.


Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/23/2008 10:24 PM (GMT -7)   

Hi Barb, it's been a few days since we talked. How's everything going? Is Nikita, feeling better getting excited about school? Is she back in her own bed yet? How are you feeling. Last we spoke you were pretty ill. I mean even more so than usual. Did it turn out to be a flu bug? I hope things are getting a little better there. I'll call monday if I don't hear from you soon.

love and prayers

carol


 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/24/2008 9:54 AM (GMT -7)   
Barb,

I didn't know you had the flu. So sorry we didn't connect by phone. I'll call you this week. The frantic week I've had has slowed down and things are back to normal. I don't think my dogs were affected by the rat poison, and the rest of the work got done.

When does Nikkita start school? Sarah leaves for her Junior year today and I'm trying to stay busy and not think about it. She turns 21 in about a week. Boy oh boy. Time flies.

Let's catch up by phone. Hope you're feeling much better.

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


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/24/2008 4:00 PM (GMT -7)   
Hi Rosie, Connie, Carol, and Patty:

I didn't have the flu, I'm guessing that my gastroparesis was acting up and it was causing me to be sick. No Nikita isn't back in her bed yet, she's having a difficult time healing and isn't feeling well. You know how sometimes when we're really sick we sometimes wish our Mom's were around, well I'm guessing that's whats happening with Nikita.

Patty I'm glad to hear that your dogs are doing alright. It would have been terrible if the rat poison had done damage to your dogs. (((hugs))) I hope you're feeling better. I'll look forward to hearing from you this week. Carol we were able to talk today and I know you're getting along as well as possible. Connie and Rosie thanks for your hugs and prayers.

I'm very tired today and I have to admit I've been really down. I'm gonna start seeing a therapist on Tuesday I hope things go well and I like him.

Thanks for your well wishes.

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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 8/25/2008 4:45 PM (GMT -7)   
((((((((( Barb )))))))))))))

I hope your appointment goes well tomorrow. You know . . . sometimes one new thought process or way of looking at things can be so helpful. I hope you receive some good input tomorrow.

In the meantime, you are in my thoughts and prayers. Heaven knows you've had it rough for a very long time sis.

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, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/25/2008 5:49 PM (GMT -7)   
(((((Barb)))))) You are in my thoughts and prayers.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; 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


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