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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 8/7/2008 4:32 PM (GMT -7)   
Hello Serina,
 
I thought I'd start a new thread for you so you don't get lost amidst the other topics.  Welcome to the forum!  I'm sorry to hear about your heart attack.  How are you recovering from that now? Lots of us have Sjogren's Syndrome, myself included.  You're definitely not alone and we're glad to have you here.
 
Here is your original posting for everyone else to read....
 
I am new to the list.  I am very thankful to all of you for the courage you have in voicing to all of us, the symptoms that you have.

I was diagnosed with Lupus in 1998, and my doctor died later, and the new doctor did not believe i had lupus, because the blood tests revealed only a mild case of lupus was possible.   Went into a major flare a few months ago, and asked my doctor for plaquinil.  He prescribed it, but also ordered Lupus blood tests.  these tests were very very positive  and I was sent to a rheumatologist.  the Rheumy as you call them ordere other tests done because of symptoms.  He found that I had Sjogren's Syndrome, and I had no idea what it was.  He said it was a variation of Lupus.

So I started looking on the internet and found this forum, which I feel is lucky for me.  So many of you reflect my symptoms back to me, and it comforting that I am not alone.  Many others out there who go through the same thing that I am facing on a daily basis.  I am taking 400 mg of plaquinil now, and hope that it will help.  I also have my own little drug store in my kitchen cabinet.  Host of things I am being treated for.  Most recently a heart attack.

Thank you, all of yoiu again for your listing of things.  It really helps.

Sirena


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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/7/2008 7:03 PM (GMT -7)   
Welcome Sirena. You have had a really tough time, the first bing a doctor who didn't believe you had lupus, which has happened to so many of us. I'm so sorry to hear that you have had a heart attack. How long have you been taking plaquelinl? It usually takes about three months for it to help but it's a wonderful drug and after you get past the first few months of side effects (stomach problems) there are usually no side effects. I hope you start to feel better soon.

I'm glad you found us!

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


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 8/8/2008 5:08 AM (GMT -7)   
Hi Sirena. Welcome to our forum. I'm so sorry that you've had such a hard time. I'm sure the heart attack was very scary and I'm so glad you survived. I take Lipitor every day because my cholesterol runs a bit high without the Lipitor. Hopefully in a few months the plaquenil and Imuran will get your symptoms under control. Arthritis tylenol helps my pain, but everyone's different. (((Hugs))) 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
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/8/2008 9:50 AM (GMT -7)   
Hi Sirena and welcome. I'm so glad you found this forum - it is a wonderful place to be able to come and talk about what it is like to live with these types of illnesses and to be among people who can really relate to what you are going through.
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



MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/8/2008 1:58 PM (GMT -7)   
Sirena,
I love your name! Welcome to the forum. You sure have been through alot! You will find lots of support and comraderie here. Judy

Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 8/8/2008 7:55 PM (GMT -7)   
Hello,
 
Thank all of you so much for your words and support.  Do any of you know what triggers Lupus or Sjogren's?  Is there something I can avoid to stop a lupus flare from happening?
 
I was also glad to know that foggy brain is common in Lupus.   I was afraid I was in the early stages of Alzheimer's.  My mind is foggy right now, and I can't remember what all of you said, or your names.  But eventually I can remember your names and be able to post better replies to you.
 
Thank you for liking my name
 
Sirena

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/9/2008 8:30 AM (GMT -7)   
Hi Sirena, welcome! This is a great place, we're glad you found us!

Plaquenil is a good med with less side effects than others. Did your rheumy tell you to have your eyes checked 2x a year by an Opthomologist (Eye MD) not optomotrist while you are on Plaq?? It is important to have them checked along with a visual field test. If you have medical insurance it should be covered under that, since it's needed because of medication.

I haven't figured out ALL of triggers a lupus flare for me but for me if I over do it around the house, lack of rest or around that time of the month, it can sometimes cause me to flare. Stress is also another trigger.

Feel free to ask more questions and keep us updated on how you are feeling. Take care
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)


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 8/10/2008 7:26 AM (GMT -7)   

Hello Stacie

Thank you for responding to my questions.

Yes the doctor has made an appointment for me at my opthamolotist's office this coming Wednesday.  And I have medicaid so it is all paid for.  I am very fortunate to have medicaid at this time. 

My mother had a massive stroke in 1990.  I took care of her in my home til she died in 1996.  After she died it was like I had been saving my own illnesses til she died.  I had a double by pass heart surgery in 1998, breast cancer and mastectomy in 2000, a stroke in 2002, and a heart attack this past October, 2007.  Medicaid was approved for me after the first heart problem, so I am very fortunate to have medicaid early.  I had lupus flares intermittenly during this time, but none as bad as this one.

Cutting down on the stuff that I do physically was the hardest for me to do.  I was so active physically when Lupus was not doing so much to me.  I could cut my own grass with a push mower, and did so for a long time.  I would clean my house really good, so that I could cut the grass and be sick for two days after like I had the flu.

At one point, I had my nine grandchildren here at my house everyday.  I would send them to school, pick them up from school and tend to them til their parents picked them up.  It was too much.  Eventually I had to admit that lupus is stronger than I am, and I had to admit that I really did have lupus, and I really did have to slow down.

It is really hard for me psychologically to do this.  but I have to it seems, or be too sick to do anything at all.  Today I work for 15 minutes in the house, and rest five minutes.  this way I get my house clean...........well tidy, not really clean.   during the flare I can do some of this.  this flare has been so different.  I have lost 26 pounds in a very short time period.  the weight I could stand to lose, and that was not a bad thing.  but the weakness, nausea, dizziness, loss of strength hit me really hard.  It has never been this bad before.

But plaquinil seems to be working to take away the worst of the physical exhaustion and nausea.  A lot of my problem with Lupus has been denial I think. 

I am cherokee, and my traditional spiritual beliefs are different from many people.  but my faith tells me that when I do my best Creator will do the rest.  It is recognising what my best is that gives me the problem.  Some days I can wash dishes, and that is all I can do.  Some days I can sweep an mop the kitchen floor, and some days it has to stay dirty.  Sometimes the best that I can do, is nothing at all physically.  Sometimes my best is watching tv all day and resting.

Thank you for reminding me of this.  To have someone tell me this, as you have done, is like getting permission or approval for being unable to do things sometimes.

I am hoping that my eye test will be good and that I can continue to take plaquinil.  My rheumatologist also told me it was wonderful medicine.  I worry though.  I do not know that I could cope well with the loss of my eye sight.  some of you seem so strong to me, and I feel weak to myself.  but all of you help me so much, and maybe this will help me to get to the place I need to be with Lupus and Sjogren's.

Hester

 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/10/2008 8:09 AM (GMT -7)   
Hester, reading what you just wrote felt like you were writing about my own journey with lupus. Everything from hating to slow down and give up an active lifestyle to feeling "weak" as a person because this disease is so hard to deal with. First of all, the people I have met here, including you, are some of the strongest people I have ever met. It takes so much courage and strength to deal with this disease everyday. Like you said, some days just getting out of bed is a big accomplishment and you need to give yourself credit for just getting that far on some days.

I have been sick for over four years, and I'm still trying to adjust and find balance. I went through so many emotions, but especially grief - I grieved the loss of my old healthy life, the loss of all the physical things I used to do. It was like I was shattered in a million pieces and had to try to re-invent myself one piece at a time. I'm slowly doing that and am finding new activities that I enjoy that don't drain all of my energy.

It's a tough journey to be on, but this forum is wonderful and it makes such a difference to be able to come to a place like this where others can really relate to what you are going through. It can be pretty hard for healthy people to understand the daily struggles we go through.

I really hope you can continue to take plaquenil since it is helping.

Hang in there and take care.
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



Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 8/10/2008 9:09 AM (GMT -7)   
I have been sick for over four years,
 
this is amazing to me.  But at the same time it is helpful.
I messed up and used my real name didn't I.  I think there is a rule somewhere that says we are not supposed to do that.  I didn't do it on purpose.  I am on several email lists, one of which I own, and just so used to signing off that way.
 
When I first found this forum, I told some friends that it was like all of you and myself were on a leper colony, pushed aside and forgotten.   We might be very lucky people in some ways.  a hundred years ago, there probably was not any support for Lupus as there is now. 
 
I was going to an adult support group, and kept having these really down day physically and mentally.  One of the Members told me that with my face red the way it was then, and the symptoms I was having, that she thought it a good idea to get tested for Lupus.  When I tried to do this, no one wanted to do it.  Finally found one doctor who would do the test, and I tested positive.  At the time I had no medical insurance at all.  Dr. Marlowe treated me for free, and the prednisone and plaquinil did not cost that much.   My daughter who lived with me at the time, paid for my meds.  When I was finally approved for disability in 1998, I paid the doctor for all he had done for me, continued to see him until he died.
 
Finding all of you has been like finding that one doctor who really cared.  I truly believe that there is power in numbers, and if we stick together, we can make a difference.   We can speak for those people who are newly sick, because we have been there and done that.  and we can speak for each other.
 
I don't think my family believed I was really sick when I first got sick.
 
I hope your day is very good to you this day.  You have certainly made mine better than it was when I first got out of bed.
 
now I do not know whether to use my real name, or use the name Sirena.  so sorry that I messed up.  creates a dilemma....sort of.
 

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 8/10/2008 11:37 AM (GMT -7)   
Serina,

Lots of folks on here use a fictitious username (like Serina) but then end up signing posts with a "real" first name. It's not really a big deal either way, but for your own safety we do recommend not using a real full name or a name someone might be able to identify or locate you by. There are lots of folks out there who like to gather information by web scrounging and then use it for nefarious purposes! We'd like to avoid being a conduit for that sort of thing.

Glad you found us and joined in our discussions...this is such a randomly attacking disease of variable symptoms. I know I wouldn't have kept my sanity this long without this support!

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

Post Edited (Lynnwood) : 8/10/2008 2:57:21 PM (GMT-6)


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 8/10/2008 1:06 PM (GMT -7)   
Lots of folks on here use a fictitious username (like Serina) but then end up signing posts with a "real" first name.
 
Well I certainly do not wish to break the rules of such a good place to be. 
 
It is helping me more than I realized that it would, to listen to others who echo my own symptoms, and to hear how they cope with the illness.  coping is very important to me at the moment.  And it sounds like maybe I am doing the best that I can.  Just telling myself that it is ok to do things as I am doing them. 
 
thank you for your response
Hester
 
PS:  the cat is sort of out of the bag now.  I guess I can use my real name if it is ok with the moderators.  If not i can change it.

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/10/2008 5:58 PM (GMT -7)   

Ginny, thanks for starting the thread. You are so thoughtful!

Hi Hester, Carol/okie here. I won't say much I just got back from being without a computer for 2 months so I'm way behind on what is going on. I just wanted to say hello. I'm glad you found the group. You will get a lot out of it. I know I do.

Sorry this is late but welcome to the group!

carol


God Bless
Possible sclero.  stage 4 COPD w/CHF,   Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/10/2008 6:17 PM (GMT -7)   
Hester,

You have sure been though a lot over the years ((( hugs )))), it's good that you don't have to worry about health coverage, that's a blessing, it's once less thing to worry about!

Like you, Hippi and many others dealing with the fatigue and physical limitations of lupus were the hardest thing to deal with. I grieved my old life for a while and still from time to time it gets me down. I think of the things I could once do and I look at what I can do now and it's very sad. I want to be able to do fun things with my family without lupus getting in the way. But like Hippi I have found things that I can do that don't wear me out, my daughter is now taking Tae Kwon Do and I love watching her and we like to go to the movies, bowling, etc. As far as house work it now it takes me days to get it all done when I once could do it in just a couple of hours. There are nights I don't feel like cooking and my hubby pitches in and helps. I also work outside the home 4 days a week.

I first noticed Plaq working on my energy levels too, I pray it continues to help you. I also didn't realize what it was doing for my joint pain until my rheumy wanted me to stop taking it. Let us know what the eye doctor says. Take care
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)


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 8/11/2008 8:27 AM (GMT -7)   

Sorry this is late but welcome to the group!

carol

Thank you for your welcome.  I was thinking last night about something someone else said, that she grieved for the loss of physical ability.  It made me think of the grief felt in death and our responses to it.  Anger, denial, and acceptance.   And this is what I have done with Lupus.  Denial came first, and lasted for a long time.  Anger also arrived realizing there was nothing that I could really do against this disease.  And finally this past month, acceptance arrived.  The results of the blood tests were simply too high for me to deny it any longer.  And finally I went looking on line for some sort of support group concerning Lupus.
 
I over did it yesterday.  I washed the dishes, took a bath and went to the grocery store.  Things I used to be able to get done with no physical exhaustion or weakness.  Yesterday I did not think I was going to make it back from the grocery store.  and anger against this disease arrived again.  I think maybe I will go through this anger/denial/acceptance many times.  Maybe it is natural and human to do these things.  and with that thought comes acceptance that I am powerless against Lupus and Sjogren's. 
 
Hope all of you find some peace in this day. 
Hester
 
 
 
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