How do we stop allowing Lupus to take over our lives?

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Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 1/10/2010 5:42 PM (GMT -6)   
I'm probably asking the question of the century here. A question with no answer. This disease is taking over my life. Doctors, tests, fatigue, pain, complications, etc, etc, etc. I had 19 doctor/test appointments in December, and this month, I already have 7 booked and I'm sure more to come. The days I don't have to go out to these appointments, I'm home resting and trying to cope with the pain and fatigue I have. I have no life. I'm spinning my wheels and realizing how time consuming Lupus is. It's becoming a full time job that I really wish I could get paid to have.

Just venting my enormous frustration and anger. Thanks for listening guys.


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Date Joined Jun 2008
Total Posts : 1470
   Posted 1/10/2010 6:32 PM (GMT -6)   
Oh Ginny! You have asked the question of the centry. I am so sorry you are having so many problems. I am right there with you. It seems like no matter what the docs do, things just keep getting worse. I had 12 doc apts/tests last month and I have 9 scheduled this month as well. I know it is so frusterating. I am right there with you, when I am not at doc apts, I am usually at home resting. I think last month I only worked 5 days in the office, the rest I tried doing some from home. Last week they wouldnt let me work in the office because of these stupid colds I keep catching. You are 100 % correct in saying that we should get paid for this...I would even say its more than a full time job. My doc has told me the thing that will help me the most is keeping a positive attitude. HA, easy for them to say because they don't live our life Day to day. but I will agree with her...and I try to even though some days its harder than giving my cat a bath. haha. Anywho, I am praying for you and I pray your docs will get things under control for you quick. This is a great topic! I am interested in what everyone has to say...

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Date Joined Feb 2003
Total Posts : 5514
   Posted 1/10/2010 6:37 PM (GMT -6)   
Awww, Amy, you always know what to say! Thanks for lifting me up

I was actually wondering how you were able to work with everything you're dealing with. Sounds like you have a very understanding and supportive employer!! What a blessing.

I'm finding that running a small business and looking after my health to be a wicked anxiety producing combo. 2010 will be a year of evaluating priorities.

Just tired of my life being ALL about Lupus. I'm praying for you too girlie!!

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 1/10/2010 8:30 PM (GMT -6)   

Hey Ginny! it's rough to have all these stupid appts so close together. I have had months like that as well. How ever I found a way around it. i spent 2 months in the hospital now I have only had 1 appt since I got out. I'm guessing they got sick of seeing me. Are you in a wicked flare or what? I was just wondering why you have so many appts. Is the winter wreaking havox on you? What are they looking for? You can tell I havn't been around to keep caught up and I am sorry about that. I don't really know what to say but things will get better. Your last couple of months sound like a witch but you will have some months that you will feel good and not have to look at a doctor. The good thing is since it's winter time now hopefully you will be feeling good in the summer.

I am pretty fortunate since I got out of the hospital. I had 3 days of constent stomach problems and 1 day of not getting out of bed without a pain pill. The biggest problem  I am dealing with is medicare made me change my anti depressant from extent releif to twice a day and I can tell the difference.

But hey when I was in the hospitals and nursing home half the time I didn't know what I was saying. (ask Pattty) and other times I laid on my side and tell people this time I'm not gonna make it. I was serious. But yet here I am. Thinking about that cat of yours that freaks ya out on the stairway lol. and I'm alive.

Hang on tight you are so much stronger than you think and every day is a new day. I guess this is all just kind of mushy. (that's what happens when I change my meds. and go on a diet!).

I'm praying for you Ginny, Hang in there

love ya carol

systemic sclerosis sine scleroderma,sleep apnea,Megaloblastic anemia
what ever that is.

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 1/10/2010 9:19 PM (GMT -6)   
I had this nice long response typed out and POOF it was gone, don't ya hate it when that happens. So here it is again, hopefully I can remember everything LOL

(((((( Ginny & Amy))))))) this year has really been tough on you both. I sincerely pray 2010 is a much better year, that your doctor's can figure things out, find a new med, etc whatever it takes to improve your quality of life.

For me it's not about doctor's appt, it's about working, being a mom and a wife while dealing with fatigue, pain..... and lupus. My weekends are back to laying around resting and not doing much else. It's spent recovering from the work week and getting prepared for the week to come. By the middle of the week I am wiped out but push through. I know I cannot keep going like this, but will as long as I have to.

I wish I had some words of wisdom for you, all I can say is take it a day at a time, make the most of what you have and continue to lean on the one you put your trust and faith in. I know at times that's very hard to do but we must not forget who is in control of things and we can always find blessings in a difficult situation if we look hard enough.

You are in my prayers. Love ya
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

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

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 1/10/2010 9:21 PM (GMT -6)   
((((( Carol ))))) you are another one that has had a tough year! Hang in there my friend, 2010 has got to be better! Love ya
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

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

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 1/10/2010 9:30 PM (GMT -6)   
Ginny, you're in my thoughts and you know, I have lupus plus several other things and I too feel like illness has stolen my life from me. I know exactly what you're going through.

I don't know what to suggest for you, not knowing the details of your life, but I wanted to share some thoughts on what I could do differently to take back a couple of little pieces of my life:

(1) This may be a problem specific to me, but I know that I make things worse for myself when I spend too much time on the Internet researching all of my illnesses and joining lots of forums, etc. Now SOME research is very important; we must be informed and able to advocate for ourselves! And some time spent in forums is invaluable, both giving and receiving important info and encouragement!! Friendship itself can be a healing thing. But I really tend to overdo it. I feel that this increases the percentage of my life that illness steals from me....I need to get out of my room, away from my computer and spend more time with family, and just STOP CONSTANTLY THINKING about MY DXS!! :)

(2) Also, sometimes I just need to take a pain pill and go to work. My employers let me work from home a lot, but I shouldn't take advantage of it so much. I think I just need to show up more, even when I feel like c&^%. Because I feel that way all of the time anyway!

(3) Another thing I'm going to try is to schedule doctor's appts that fall in the same week on the same day, like one in the morning and another in the afternoon, just so I have a "doctor day" and the other days are NOT "doctor days". This may not always work out, but I can try!

Anyway, as I said, a lot of these things may just be specific to me, but I think if I can implement these changes in my life, it may help a little!

Take care Ginny, and feel free to vent as much as you need to!! We all understand where you're at....
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 1/11/2010 11:05 AM (GMT -6)   
   I had a big, long reply and erased it because, although it came from the bottom of my heart, it sounded trite.  I know how you feel and it's frustrating beyond words!  There are no easy answers.  Just know that "this too shall pass" eventually, there will be better times ahead.  And know that you've got a friend in South Mississippi praying her heart out for you!!!
                                                                                                               love ya, Judy

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 1/11/2010 1:23 PM (GMT -6)   
Ginny, this is a similar question that I posed a few weeks ago, and I too wish I had a magic wand to make us all feel better. For me, things come and go, and when they come, so does my depression. When I feel better, I get out of bed and become a bigger part of my family. But I think my lupus is milder than yours and many of the other people here, plus I don't have additional medical conditions.

If it gives you any hope, I took my last prednisone pill last week and my new rheumy has also taken me off Lelflunomine, so the only AI drug I'm taking is Plaquenil. Finally, after 6 years. I'll be anxious to see if I get to drop the plaquenil one of these days.

I know that this isn't an answer to your question, but maybe it will give hope to you and others. I sure hope so. I believe I'm in remission.

Don't give up hope.


SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta, acifex

New Member

Date Joined Jul 2009
Total Posts : 9
   Posted 1/30/2010 6:37 PM (GMT -6)   
i don't know how many of u lupus sufferers there r, but i have something that can helped me tremendously.........i've suffered with these symptoms that turned out to b lupus for close to 9yrs........just diagnosed 3wks prior to that i was working with a really good dr & treating myself.........i have never left my health in others hands..........i research & have my name in forums & i let my brain work on questions while i'm doing other things.........even tho this thing has done a job on my once really good, analytical brain........

so about 13.5mos ago, way b 4 i knew i had SLE, i was so sick..........couldn't think, my stomach was so sick ( 24hrs a day, nausea, throwing up, major bloating, diarrhea), i couldn't have even a t-shirt resting on my stomach (this had gone on for over 6yrs)..........migraines, joint pain bad enough to drop me to the floor or crash into things, every single piece of flesh hurt so bad, clothes hurt, kidneys not getting rid of toxins, my skin was kinda gray......i was close to giving in & slitting my wrists........

the dr did what he could, but all the pieces weren't there.........i had very few good moments.......

i am, AGAIN, researching things for my stomach.......i had tried so many different things.......of all my problems, my stomach was the worst.........& i run across this medical article about dilute hydrochloric acid (HCl) (this is not the stuff called betaine hydrochloride u can buy from any vitamin store, it's the liquid chemical acid that has to b handled very carefully).........i can't remember what i was looking for or what i had put in the search engine, because this changed my life............

i happen to have some experience with chemicals & HCl in particular..........about 30yrs ago, i found out it was wonderful for cold sores.........this article was very hard for me to read then, because of my foggy brain, it took me 3 days to get about 1/3rd thru it..........well, it was something else.........i decided i'd go take some, i keep it in the house just for the cold sore thing.........took just 4drops of it in a capsule, w/8oz of water & went back to the computer to continue about 20mins, i noticed my stomach was much better & i started to burp, which had been so hard for me to do.......then i noticed i was reading faster.........i took note of this & continued to the time i got thru i was so excited, cause i thought if i could just help my stomach, i would b so much happier.........

well, over the next 4mos, my stomach lost it's very bloated look & feeling & i could eat w/o throwing up........but other things got better, joints slowly got better, my migraines cleared up.........i noticed about 6mos in that my flesh didn't hurt so much.........

today, my sinus issues r almost non skin feels much joint pain is only very occasional & i don't use any painkillers for skin looks healthy & kidneys work much better.........i detoxed for months, not a pleasant thing!!........many things r better from this much needed stuff.........& i very rarely get sick anymore.........

HCl increases oxygen in the keeps the stomach kills germs & bacteria that would otherwise get into our gets rid of alot of waste toxins that pollute our is truly amazing stops acid indigestion, by cutting out the over production of gastrin & histamine trying to get more HCl produced.........

i've also made a much more diluted version from the stuff i take for my stomach, that i use for disinfecting cuts & scrapes (things use to heal much slower).........i use it on my face as an astringent, it is an alpha-hydroxy........i use it on those sores or whatever they r that come out on my head & hurt so much, it heals & dries them up........i mix it with DMSO & this homeopathic analgesic gel, for any deep tissue works well, i usually only have to use it once..........this very dilute version i use to kill sore throats, when they come up & for my nose, either sores or mild congestion.........i drop maybe 5-6drops on the back of my tongue & swallow kills the germs there & down the throat..........stops germs from colonizing.........when i use it in my nose, i tilt my head back & put 1drop in each nostril & rub my nose a bit to spread the liquid.........let it sit for a few minutes & sniff carefully........i can feel it work on those tissues & then go down the back of my works like nothing i've ever tried.........

& this stuff is something ur stomach is suppose to produce a lot of all day long to keep ur stomach at a PH of 2-3........otherwise, u r in for gets minerals into solution, so ur body can use them.........

there is so much i've learned about over the past yr, but u can c, it's miserable to u have to b to try anything??...............i was there............chris.......

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 1/31/2010 4:27 PM (GMT -6)   
Like others I don't have a magic answer.  I have MCTD which is lupus, scleroderma and polymyositis and have a large spreadsheet to document all my tests, procedures and doctors appointments over the past 5 years....too many to remember.  If it isn't bad enough to have 3 major AI diseases all the secondary conditions make it even harder to cope.
All I can tell you is that I decided in 2005 when I was near death that I wasn't ready to die and that I was going to get better.  That seemed kind of ridiculous at that time because my PM was out of control and not responding to treatment.  Fortunately, the docs treated me with IVIG and saved my life.  I was a bag of bones at the time.....lost 40lbs of muscles and was a quad and could not swallow.  Again, I decided not to believe what the docs told me. I would be active again and, as improbable as it seemed (actually delusional given all the damage and problems), I did recover and now lead an active life.
All through my illnesses I just believed I would get better.  I did not know how or when and was willing to accept my disability if things did not work out but would try like hell until then.  The second thing that helped me was to take one thing at a time.  Much easier said than done.  In the beginning when I was so disabled and things so hopeless I took it one hour at a time and somehow got through it.  I am still in that mode 4 years later and wish I had learned this 50 years life would have been happier and easier.
Of course, you do have to accept what you have first which I am sure you know.  That is not so easy for many.
Having told my story I also get sick and tired of dealing with things.  My body lost 35-40% of muscle cells and I have to keep working out or I will go backward quickly....nothing in reserve with such losses.  It is tiresome but everytime I think I can't do it I think back to where I was in 2005-6.....and then I think of something fun I really want to do.  So, I play all kinds of mental games with myself to keep me going.  The past few months has been tough and I have been focused on my wife's cancer and been neglecting myself.  She is doing better now and I am refocusing on myself again.  It helps to have a partner who reminds you to take care of yourself.
Don't know if this helps you at all.  My "magic" is simply optimism, a certain amount of stubbornness and a somewhat carefree attitude of dealing with problems one at a time.  If I had thought about all I faced I would have been overwhelmed emotionall and would not have made it.
Hang in there and hope things get better. 
PS - One last thing.  I help run a couple of support groups, help on the internet, and volunteer in a rehab hospital.  I see people all the time who are MUCH WORSE than I and it helps to level set my emotions.  It was difficult to do this at first because it brought back a lot of bad memories but now it really helps me and is rewarding when I can help someone.
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
Remain optimistic and you can overcome the odds.

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 1/31/2010 8:59 PM (GMT -6)   
Ginny I have had months like that, then I have months when I see no doctors at all it just depends on how stable things are. I cope by reading. and recently we adopted a cat who makes life interesting. I wish I could do more than say I am here and listening but I am in a low place right now 2009 was a very BAD year for me and so far 2010 does not promise to be any better.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 2/2/2010 12:24 AM (GMT -6)   
Hi all,

Just thought you'd like an update on my 3-point plan for taking back my life, LOL!

Please see my previous post, above, for the details.

#1 - Spend less time on the Internet researching my conditions - This is sort of working because I'm tired of reading about my conditions, but I can't claim to have substituted anything else really useful in place of it.

#2 - Suck it up, take pain meds and go to work - This is definitely not working.....I can't get to work right now, I'm in too much pain, light hurts my eyes, makes me feel nauseous, can't go out of my bedroom much (keeping it dark in here).

#3 - Try to schedule dr's appts on same day of week to have some days without seeing doctors - well, I don't know....lately I've just been calling my doctors and postponing my appts because I'm just so SICK of seeing doctors. mad

Oh well, I tried.....right now I feel like lupus (or whatever it is I've got) is winning the battle. :(

Ginny, I hope you're feeling better about things in your own life tonight than I am!

Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 2/2/2010 1:43 AM (GMT -6)   
Bless your heart! That is an age old question for I have been dealing with this disease for 33 years now and still ask that question from time to time.

When I was younger working full-time and raising kids, it was a constant battle between my body and mind. There were so many things that had to be done, along with the things I wanted to do in my mind. However, my body was interferring with my plans. I won a few battles and lost some as well.

I have fussed, cussed and pitched many fits over the years due to frustration of this disease. Being the stubborn, hard-headed person I was, I refused to let a disease and medications control my body. I continued to do the things I wanted for many years until I could no longer.

The hardest thing for me to give up was the sun. I loved to swim, lay in the sun for that perfect tan, go to the beach, play ball. Anything that had to do with being outside in the sun, I did it, until it came back on me in 1998. Lupus attached my heart with pericarditis for over a year.

That same year with the pericarditis, it attacked the muscles in my legs. I would wake up during the night with severe throbbing pains for hours at a time with no relief. I couldn't stand, walk or sit without crying in misery. This pain would go on for weeks then reside and return.

In 2000 it attacked my equillibrium, now I can no longer swim and my balance is messed up. In 2003, I had a stroke. In 2004/2005, lupus attacked my lungs requiring the Cytoxan infusions. The same year it attacked my brain causing seizures and tremors into 2006.

I have had multiple surgeries. My hearing is almost gone in my left ear and my memory is a mess.

I was always the type of person that had to have control of the situation. During those years, I had no control and it ate me up. I fought with God until I finally realized he was in control and it was time for me to take the back seat. I'm a lot more mellow now...:)

The last few years have been kind to me. Of course, I have my good and bad days and I'm in a flare right now, but all I do now is rest. I'm an old fart!

I still miss being in the sun, but if I'm in direct sunlight for a few minutes my skin feels like it is on fire. I miss swimming too. I was once very athletic and now I'm flab. Oh well, life goes on!

I'm very thankful to be here today to see my grandchildren and spend time with them doing granny I keep my mind busy by reading and writing. When it warms up a bit, I plan on trying to walk some late in the evenings.

Ginny, I know you have had some of the same issues as I have in the past. You know your limits sweetie. Listen to your body and don't be stubborn like me.

It sounds like you are in a very nasty flare right now. Please take care of yourself. I hope you feel better soon. You are in my thoughts and prayers. Keep us updated.

Love, Babs

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 2/11/2010 9:32 PM (GMT -6)   
How are you feeling sweetie? You haven't posted in awhile and I'm getting a little concerned. When you can give us a quick update. You are in my thoughts and prayers.

Love ya, Babs

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 2/12/2010 1:27 AM (GMT -6)   
My sweet Ginny! you are winning the battle right now. Until you lay down and don't get back up then you are winning. When you have appts. to go to and you finally say that's it! I'm tired. I'm to tired to go on.  Somtimes instead of looking at things around you and thinking about what you want to do  you need to stand back and see just how much you really are doing., When I come here I see you are up and at em helping moderate the groups. I can guarentee as long as you are being this stuff as long as you are reaching out and helping other people.
However there are going to be times when you are tired and you need to back off and take a break. but that is all part of healing. I used to own a couple of groups on line. when my son and friends were in iraq. we started with 1 group and expanded to 3. I got tired. Do you know that saying. If you need somthing done give it to the person that is the busiest. You love the people here and you certainly wouldn't be doing the job if you didn't care. It's people like you that are going to push until answers are found and lives are saved. The more involved you get the more opportunities you will have to get ad's in the paper or on the local t.v. stattions. You'll be getting people involved in the walk for Lupus. So I guess what I would have to ask you is ............who is controlling who's life? When you need to take a brake then sure take one. But I think in the long run you are going to be very thankful that you chose to "allow Lupus to take over your life".
Lupus lung, maybe, scleraderma maybe, another A/I maybe, Hang nail maybe. COPD
meds to many to fit in my 10 lines. but last count was 28.

 Jesus loves you and so do I!

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