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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 7/29/2007 6:51 PM (GMT -7)   
You are missed. I hope you are getting things together and not too sick and tired. Looking forward to an update.
love and prayers
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/30/2007 7:20 AM (GMT -7)   
Barbara, you've been on my mind too. I hope the moving didn't put too much stress on you and I hope you are slowly getting settled in. Just make sure you are taking good care of yourself.

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; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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



CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 7/30/2007 7:22 AM (GMT -7)   
Miss you too Barb. Concerned about how you are doing and if you are getting better. Hope to hear from you soon. Still in my prayers. HUGS! - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/30/2007 7:35 PM (GMT -7)   
Hope you are getting through the moving in process ok, Barbara and that you are finally maybe starting to heal, or at least they've started on plan B, they do have one don't they? I hope this message finds you relaxing, watching tv, too peaceful and good feeling to reply. Have been thinking about you alot. I don't know how you manage to do all you do. I hope you are resting peacefully and enjoying your family and new house.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
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
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/30/2007 9:04 PM (GMT -7)   
Barb, I join all your dear friends here in hoping you're doing well and that the move went smoothly. I wish you could have moved without having to go through the moving part. "Poof" and you're there. I think we should all ask for a fairy godmother for Christmas, a special one for lupies.

Do let us know how you are as soon as you're up to posting again.

We miss you!

Love,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 3 mg, actonel, tri-est (compounded estrogen) 7.5 mg, imitrex, cymbalta 30mg, multivitamin, calcium w vit D, fish oil, aspirin


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/31/2007 12:28 PM (GMT -7)   
Hi Carol, Hippi, Kris, Marji, and Pat:

Well our move went, lots of things broken and huge amounts of stress. Had some special blood work done during this time and saw Rheumy last week. Apparently, I've got RA in addition to everything else. So the plan is to start Humira once my wound is healed. Which it's now been over 30 days and it's still as wide open as before. Oncologist saw me the same day as Rheumy. She worried about the combination of Humira and Methotrexate, as both of these drugs suppress bone marrow and since my blood cancer causes me not to make enough bone marrow, well you see the problem.

Marji to answer your ? as to whether they have a plan B. I'll kindly say NO, they've got no idea what to do with me. Everyone is afraid to treat me and I personally think, they're just hoping I'll just disappear. So no plans to treat me at all. I'm to live in this hole that is called my life. The therapist I'm seeing says his job is to try to make my life as positive as we can, with what we've got to work with. nono nono nono nono I say, fix me or shoot me.

Anyway, my house is a mess, my body isn't working like it should. My wound isn't healing, but I'm thankful you all are my friends and that you at least care about me. I've finally gotten my hearing date for my SSDI it's gonna be on 9/27/07, I applied for SSDI in 2/2005, been waiting for sometime now. I hope the judge rules in my favor. I'll try to be on more, I'm just worn out totally. I think of you all often and I promise I'll start posting more real soon.

Love to you all
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/31/2007 12:40 PM (GMT -7)   
Hi Barb,

It was so good to hear from you, but I'm heartbroken to hear how bad things are for you now. I am happy to hear that you're seeing a therapist. Barb, please don't feel like you have to post here or that you should be on more, but we just want to know that you're ok. Rest and take care of yourself. We do worry so about you and I hope you know how much you're loved and missed here. We're all rooting for you to start feeling better soon. For now, I hope your wound finally heals and that your hearing next month goes your way. If you shouldn't be on SSDI then who should????

You take care, Barb. I think of you all the time.

Hang in there,

Love,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 3 mg, actonel, tri-est (compounded estrogen) 7.5 mg, imitrex, cymbalta 30mg, multivitamin, calcium w vit D, fish oil, aspirin


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/31/2007 7:03 PM (GMT -7)   
Barb, I was worried that the move and all the stress and work related to moving would be extra hard on you. I'm sorry to hear about the RA - you didn't need any more heaped on your already overflowing plate. It really stinks that some of the meds needed to help one health problem are harmful to you nad the other health problems you have. It's so hard to understand why these harsh meds are some of the only things around to treat these diseases.

You continue to be in my thoughts and prayers. I wish there was more the docs could do for you, Even if they can't do a lot to treat some of these things, I would at least hope they would work on helping you be as comfortable as possible.

I really hope your SSDI hearing goes well. It's just insane to me that you haven't been approved for it yet. I think they set the system up with the hopes that people will get too tired of appealing and will quit trying. It just makes no sense to me why someone as sick as you should have to wait 2 years before anything is being done.

Hang in there Barb. You have lots of people here who love you and are pulling for you. Please try to take care of yourself.

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; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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



cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/31/2007 8:06 PM (GMT -7)   
Hi Barb,
Sorry to hear that your port hasn't healed up yet. They need to get it fixed up. I can't believe they are making you go through all that hearing jazz, how ridiculous, or should I say disgusting, or both. I thought if you were like really sick you got it right away. And the movers broke stuff, like how hard is it to move stuff. When I was a kid we moved ALOT, like twenty times and I remember having to glue stuff together afterward and it got so we would talk about each crack and what move it happened on.

I think your docs need to get some plans together for you because it seems like their success rate isn't so good right now. RA too. And they want to give you another strong medicine. Well, don't waste time replying to me, my brain isn't working so well lately and you need to rest. I know you've probably been through all of everything, but maybe a second opinion or another set of eyes might be good, and not just a brush off to someone who says "but you're seeing the best". I'm sure you've probably been all through that, but it just seems like they've had enough time to get it together, though you don't want to lose the team you have either. I hope they are making sure you are getting proper nutrition to help you heal faster.

The therapist sounds like a real "upper". They can be so weird sometimes. They tried to give me one that was barely 18 once at the "free mental health" place, and she was like Barbie, or Clueless, or something and she couldn't fathom anything, OMG! and then I had the one with puppy dog eyes and I think I put her into therapy, but I had some good ones, too.

I pray for you and hope you heal up soon so you can feel better and you can do the things you want. I hope all is well with your family and my prayers are with them too. Please get better.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
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
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7023
   Posted 7/31/2007 8:38 PM (GMT -7)   
Hi Barbara,

So glad that you felt like posting for yourself. I'd thought about updating the news from the information I'd gathered from seeing you in the chat room, but somehow I never made that happen.

I think of you daily,

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


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 7/31/2007 9:02 PM (GMT -7)   
Barb,

I'm so sorry that you are having such a hard time. It must be so frustrating for you with all that is going on with your health to get a treatment plan going. In the mean time, please take it easy and take care of yourself. You are in my prayers.

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


http://www.healingwell.com/donate


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/1/2007 5:37 AM (GMT -7)   
Hi Barb, I'm glad you were up to posting a little. It sure seems like you can't get a break! I hope things go real smoothly with your SSI, I can't beleive you aren't already getting it.
As for the therapist what a comment????? I mean isn't that everyones goal? To live as possitive a life as possible? You sound so depressed. I'm with Marji about the doctors. f you feel like they just want you to go away that is not going to help you to be very possitive. I know you're sick and very tired but maybe if you could find another doctor to see even once it might get you more hope than what it sounds like you have now. I know that's easy for me to say. I'm not the one going thru all of this. I am worried though. I hope you can get some real help.
I'm glad you got moved but sorry about your stuff. Did they box up your trash and ship it over too? I imagine hubby started his new job. I hope your new life there will be good to you.
Get some rest take care
love
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 8/1/2007 7:39 AM (GMT -7)   
You survived the move and I am so happy to hear from you! Sorry, your still feeling crappy. I'm sure the SSI will work out. It is hard with so many things going on at once. Do I live with severe joint pain to the point I can't sleep or do I take the medication and hope I survive another year? I hate these tough choices. It is scary. Especially, when they don't have a plan "B", are afraid to give you ANY medication and their only concern is to keep you in a "happy place". I'm there now, it is creepy. I always get the feeling there is something that they are not telling me about my condition(s). The way I see it the whole thing isn't up to me or the doctors. My job and their job is just to do the best that we can with it. I try to research a lot in case there is something the doctors or myself are missing. It is better that my focus is on my getting well and not on the creepy stuff.

It sounds like you have a lot of things to focus on. Sounds like you could use a personal assistant :) Still, one day at a time. Hope you can focus on the positive. Sooo hard to do when you feel crappy, but sooo important. Our shoulders are here for you just in case. I am glad you can feel how much we care about you. HUGS & Be well - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 8/1/2007 1:04 PM (GMT -7)   
Barb I am sorry to hear that things are so tough for you. I hope you can hang in there and keep your spirits up.
 
(((BARB)))
 
 
Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


ocean1
Veteran Member


Date Joined Dec 2006
Total Posts : 707
   Posted 8/1/2007 8:14 PM (GMT -7)   

Barb,

I am so sorry to hear how rough things are for you.  I have been thinking about you a lot and I want you to know you are not alone.  You are in my thoughts.  I hope the doctors can get together and come up with something to help you feel better.


Diane (ocean1)
________________________________________
Muscle disorder 2007; Lupus Sept. 2006; IBS 2004; Chronic Hives 2002.
Medications:  Allegra and Zantac; Lunesta, and Ultram PRN.


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/2/2007 7:36 PM (GMT -7)   
Evening Ya'll:

I just wanted to say thanks for being my friend. My days are so long, w/o HW I'm not sure what I'd do. I was sitting here today and realizing that I do very little for myself these days. I just don't have the energy to do anything. Of course, I know my nutrition is part of that problem. I look so funny now, my legs and arms look like the children in Africa with the skinny arms and legs, and a bloated tummy. Bill calls me "chicken legs" now, he doesn't mean it hurtfully.

I struggling here trying to say what is on my mind. When I responded to the post before, I'm afraid I made some of you feel bad. I feel so bad, I know you all want me to feel so much better. It's hard to understand and accept that's not gonna happen. My oncologist has said he's certain I'll worsen with time. Of course, there is always the chance of a miracle, but I'm not gonna hold that wish to tight, so that I won't be disappointed in the end.

I've had second opinions to my second opinions, it's just a matter of time for things to take it's course. I'll get my transplant eventually, it's just right now the risks don't outweigh the treatment. The scales will eventually even out and then we'll try for the transplant. I've seemed to accept this easier than the ppl close to me. My heart breaks for you all. Anyway, I just wanted to say I'm sorry I don't say I"m better. Look at it this way my saying I'm the same is a good thing, when I say I'm getting worse means I'm getting closer to the end.

My wound looked a bit better tonight when we cleaned it, so hopefully I'll get to start the humira soon. I have to say the pain I live with daily is getting to be a bit much. I have good drugs for the pain, but I'm getting tolerant to them and find I'm having to take more to take the edge off the pain. I hope you all are doing ok and know I cherish you all.

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


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7023
   Posted 8/2/2007 8:06 PM (GMT -7)   
Hi all,

I had to look up Humira so I thought I'd share what I found with ya'll...

Research said...
Humira is a medicine called a Tumor Necrosis Factor (TNF) blocker. Humira is used in adults to reduce the signs and symptoms of moderate to severe rheumatoid arthritis (RA) in adults. Humira can be used alone or with methotrexate or with certain other medicines. Humira may prevent further damage to your bones and joints and may help your ability to perform daily activities.


I hope they'll clear you for this soon and that it will help with your pain and other RA symptoms, Barb.

Cheers,

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


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 8/2/2007 10:08 PM (GMT -7)   
Hi Barb,

I've not been posting much, but always reading. Lots going on right now. Anyway...always tell us truthfully how it is with you. Of course it's hard to hear, but you need to have a safe place to say how it really is; a place where everyone loves you and cares about you. That place is here. Don't worry about making any of us *feel bad*. We feel bad because we'd like to wave our magic wands and cure all of us! Do not let that stop you from expressing yourself honestly.

This crap really sucks. But for some reason we have been "chosen". And if we think about it, there are other things in our lives, good and bad, that we can wonder why we have been "chosen" to experience and live with and through.

Love you, Barb. Prayers and Healing sleep to you.

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/2/2007 11:34 PM (GMT -7)   
Hi Barb--
I'm glad to hear you sounding so peaceful and relaxed. I'm sorry things are going so lousy with your body, but there will be some change eventually, things will not stay the same. I'm glad you're getting good meds and I hope they do a good job rotating them and keeping them working for you. I get really mad they illegalized medical marijuana because this was another option for people, non-narcotic and non-addicting, and I understand it helps with nausea and increases appetites. People just don't have anything better to do than cause problems for others it seems these days, and to what benefit?

Well, speaking of something to do, you can indulge yourself in the guilty pleasures of computer gaming, I like crosswords and all, especially if I can get the family involved in helping me, and I go to washington post because they are free and pretty challenging sometimes the link is:
http://crosswords.washingtonpost.com/wp-srv/style/crosswords/daily/front.htm
and if you like solitaire, there's like this crazy free solitaire with about 100 different types of solitaire and all the instructions how to play
www.goodsol.com. Its a free trial, but the counter only counts the days you play it so it lasts a long time.

I hope you take it easy, I know its hard in a new house, wanting to get everything set up, but maybe this could be a time for you to work with your daughter to help set things up and explain the history of all the stuff you have and explain why you like things in certain places. I found teaching my son that really helped him organizationally, he hadn't really thought about things like that and he got to know why some of my stupid knicknacks meant so much to me, and to see the things he got me through the years.

I'm sure you know all this, I just worry that you do too much. As for the transplant, you are strong and will make it through. Hopefully it will give you great relief.

Please just don't let anyone make any decisions regarding your life and treatment for you, or let them pressure or guilt trip you. You seem pretty strong, so I imagine you will be fine in this regard. This time is so precious and it's yours to do with what you want, how you want, even if things might seem futile, or to cause you more pain with not much gain, its your decision how much you will put up with.

The docs are always wrong about time, focusing on worst case, and you have the right to decide how much you will stand. My grandmother was guilttripped into quitting all treatment for her inoperable brain cancer, I was so mad because she wanted treatment because she wanted to be there for the birth of her granddaughter who was due in a month and to do some other things and make sure everyone was taken care of.

I got in a very bad fight with her nurse, who kept harping on quality of life and expenses, and I was near pushing to get her fired. It was my grandmother's decision what she wanted to do, what she wanted to put up with, and she had things to do. She took therapy that they insisted would only give her a month and it gave her nearly two years, during which she had a period of unexplained remission and got to know and care for her granddaughter and do special things for her family. I was so happy she fought, followed her heart, and stuck to her guns on things. Had her decision been the other way, I would have fought for her wishes to be followed, because it was her decision.

You sound better, relaxed and mellow, and I hope you are enjoying your family and new house. Please know my thoughts and prayers are with you and your family always and that you are such an inspiration, the way you have handled things so gracefully and with so much class. Wishing you much happiness and peace and fun with your family. ((((hugs))))
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
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
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/3/2007 3:31 AM (GMT -7)   

Hi Barb, Please don't feel you have to struggle to say what's on your mind. If what you say is upsetting to us well than that just makes us more human. The day I stop caring about people and their suffering is the day my life wouldn't be worth living any more. If it has to take you getting worse before you have a chance to get better than so be it. We will always be here for you. Yes we will be sad for what you are going thru. We will want to be there to take away your pain but that is what family is for. That is how I feel about you and all of the others. When I had my cancer scare you were one of the first ones there for me offering what ever you could. You let us worry about how we deal with our emotions and you just keep posting whenever you can. Don't hold back anything you want to say. It's toxic to hold things in. Just know that we are all here behind you 100%. None of us is guarenteed even one day so it's important to share ourselves with others to insure that part of us will always be there.

with love and prayers

carol

 


God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/3/2007 6:40 AM (GMT -7)   
((((Barb))))
I will find a way, or make one.-Philip Sidney
Make sure your suffering has meaning...


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/3/2007 7:05 AM (GMT -7)   
Barb, don't ever feel like you have to sugar coat anything here. This is a place you should be able to come to and be brutally honest about what this disease and your other illnesses are doing to you. I know that you know that we all want to help and I know for myself, I just keep wishing there was more that docs could do for you, but I know from reading everything that you have been through that you have exhausted most of your options and have gotten multiple opinions.

I can't imagine what it must be like to be going through what you are going through, and I know that there most likely won't be a miracle recovery and it makes me very sad and all the suffering you go through makes me very sad too. But, like Carol said, all of these feelings just mean that we are human and that we care deeply about you and are committed to be here with you on your journey no matter how bad it gets. I appreciate your honesty about all of this and your being up front about being terminal. Your courage to say that gives us the courage to talk about it too and to be there with you through all of this.

Of course I would love it if you could get better, but since that is not very likely, my biggest wish for you is that you could be physically and emotionally comfortable and that docs could help with things like pain management and nutrition. I know that myself and others here are by your side through whatever you are going through and everything you will go through in the future.

We're always here for you, Barb no matter what you are going through. One thing that never ceases to amaze me is how you still give back to others here at the forum even when you are feeling so poorly. I just think that you are a wonderful human being.

Lots of 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; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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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