Any Decorators With Lupus?

Lounge By smbegg Updated 1 Feb 2009 , 5:07pm by tonedna

smbegg Posted 24 Nov 2008 , 11:01pm
post #1 of 34

I was just diagnosed with Lupus in October and I was wondering if anyone else on CC has it and how does it effect your decorating? My joints get really swollen after a day of decorating. Anyone have and tips or pointers that help.

Unfortunately my lupus is attacking my kidneys right now and I have kidney failure and am going through chemo to try to put them into remission, so I have not been able to decorate as of late, but I hope to get going again soon.


Stephanie

33 replies
MnSnow Posted 24 Nov 2008 , 11:37pm
post #2 of 34

I'm so sorry your going through this. I have Lupus as well and have suffered renal failure a few times. WIth faith and strength, they can start working again.

I know there are times when it's tough to just get out of bed, let alone fullfill orders.

The best advice I can give you is to reduce your stress level. (I divorced mine lol ) Reducing your stress greatly helps to get Lupus into remission. Make sure you get rest, even take naps. Avoid being around anyone that's sick. Avoid it like its the plague! People with Lupus have no immune system and when we catch even a common cold, it can be deadly for us. We have no immune system to fend off germs

I was diagnosed in 1990. I am in total remission today. And for today, because it could rear it's ugly head tomorrow. Please feel free to PM me if you want someone to talk with

cakesdivine Posted 25 Nov 2008 , 9:36pm
post #3 of 34

I too have lupus. I have good days and bad days. I refuse to be treated medically for my condition. I choose holistic methods. The one thing that truly helps me is flax seed oil, I take supplements and eat many items with flax seed in them. It helps keep me in remission. The medical treatments for this illness are damaging to the organs in and of themselves. The things that trigger me are stress and when I don't watch my diet and become lax with the flax...icon_smile.gif I haven't had a major episode of not being able to move in quite some time, but here recently my left knee has been swelling up, and my hair is falling out again...basically because I am currently under a ton of stress and haven't taken my supplements in a couple of weeks (ran out, broke...LOL!) So, as soon as I can get some extra cash (I am so bad about spending money on myself) I will hit it hard again with the flax seed oil. Plus, eat a balanced low fat diet. But that works in general for most things.

My sister has lupus too (much worse than I), and on top of that she has an allergy to gluten & soy...yeah she's screwed in the food department...LOL!

rcs Posted 26 Nov 2008 , 7:41am
post #4 of 34

I also have Lupus. They didn't find mine until I went into renal failure 3 years ago. I have been doing alright since I was put on Cellcept. Still, there are those days that I am stiff and ache all over. Every once in a while, I have a day that I'm down for the count. I just don't feel good. I can spike a high temperature quickly. It usually doesn't last more than 6-12 hours but really leaves me drained. As far as staying away from anyone that's sick, well, I work in a minor emergency clinic and that's kinda hard to do! I did have to cut back to part time. My nephrologist tells me that my Lupus is kinda atypical. My right knee also became swollen. They thought it was due to some form of arthritis until they did a culture on the fluid. I had a strep infection in my knee. I ended up with knee surgery, several weeks of physical therapy and 4 months of a high dose of IV antibiotics daily. Our bodies react differently to infection.
Cake decorating is a great creative outlet. It still can be stressful especially when I have too much going on with my job, family...! Hopefully, they can turn things around for you soon.

Carson Posted 29 Jan 2009 , 4:06am
post #5 of 34

I realize this thread is a little old, but cc has helped me with so many other problems, I thought I should try this one!

After doing a ton of research myself, I have think I have convinced my doctor to consider testing for lupus. This is VERY recent after I have had 2 weeks of unbearable jaw pain - which I have been treated for a number of things and seen a oral surgeon. I also have extreme pain in my pelvis and some pain in my knees, and definitely a lowered immune system - it took me an unbelievable amount of time to get over pneumonia.

Besides pain I have fatigue, weak/numb hands (especially in the morning), hair loss, nausea on a regular basis, anemic, swollen glands in my neck for the past 5 months, thrush and mouth ulcers and blurred vision.

So I have a couple questions...what do you ladies think about my symptoms - are they similar to yours. I have been living with all or some of these symptoms for a long time now. THe problem always was I would get feeling a little better, thinking I just was stressed or was sick, but it always comes back - and lately (since Sept) I've noticed it has been a constant struggle. Am I way off base here?

How hard was it to come to your diagnosis? Did you struggle with mis-diagnosis and multiple tests?

Anything will help, I have been feeling like I've been just a wimpy crazy woman for so long and when I happened onto a lupus site it was the only thing I could find that explains everything. I have a appointment with my doctor again soon, so I'm hoping to start getting close to some resolution!

Thanks so much!

MnSnow Posted 29 Jan 2009 , 4:25pm
post #6 of 34

Carson-
I would get checked.
When I was diagnosed, they originally thought I was having a gall bladder attack, until the surgeon examined me from head to toe. By the time he got to my tummy, I was crying (sobbing) because it hurt so bad and he was barely touching me.

While there is no concrete test that says it is definately Lupus, there are blood test that indicate it, such as an ANA, sed rate and CBC. They can do biopsies of affected areas.

Lupus can mimick many other disorders and is frequently misdiagnosed. It can have strange symptoms and then it can have the typical ones.

Good Luck and let us know

kaat Posted 29 Jan 2009 , 10:30pm
post #7 of 34

Carson, have you been reading my symptom journal?!?!? icon_lol.gif
I agree with MnSnow - get checked.
It took me 3 years (and 3 rheumatologists!) to get diagnosed and that's not bad.
Stress is defintely my trigger point so I try to avoid it - YA RIGHT! Oh and you're not crazy! But I know how that feels! Good luck, take care of yourself and let us know how you are doing.

Carson Posted 29 Jan 2009 , 11:21pm
post #8 of 34
Quote:
Originally Posted by MnSnow

Carson-
I would get checked.
When I was diagnosed, they originally thought I was having a gall bladder attack, until the surgeon examined me from head to toe. By the time he got to my tummy, I was crying (sobbing) because it hurt so bad and he was barely touching me.

While there is no concrete test that says it is definately Lupus, there are blood test that indicate it, such as an ANA, sed rate and CBC. They can do biopsies of affected areas.

Lupus can mimick many other disorders and is frequently misdiagnosed. It can have strange symptoms and then it can have the typical ones.

Good Luck and let us know




The gallbladder thing is interesting. I had my gallbladder removed and had the same attacks after it was gone. I would keep telling the ER nurse that it is EXACTLY like my gallbladder attack and she just kept saying "but you don't have a gallbladder". It was some of the worst pain I could ever imagine. So that is interesting to me...I ended up having a scope (that put me in the hospital for 4 days) and it has been better - but I also am WAY more careful about what and how much I am eating - so hard to say what helped more.

Thanks, I will keep you updated - its scary - it seems like a long hard struggle for you guys.

Misdawn Posted 29 Jan 2009 , 11:36pm
post #9 of 34

I have Lupus, Rheumatoid Arthritis, Myasthenia Gravis, Chrone's Disease, Fibromyalgia, Scleroderma, and Raynaud's Disease. When I was first diagnosed with Lupus, I was 17 in my senior year of high school. I was in the hospital 13 times in 2 months. I lost 85 pounds in 60 days, and was in renal failure with severe dehydration and malnutrition. I also had an episode three years ago where I began renal failure. The Lupus has also attacked my spleen and reproductive system. There is a bright side though, the doctors told me I only had about 4-10 years left, and that was almost 14 years ago. I am now in full remission.

As far as decorating goes, sit whenever possible. When you have to stand, wear the most comfortable shoes possible. When piping with stiff icing (like when I make buttercream roses) use slightly thinner icing and put your roses in the freezer immediately. You can do this with a lot of your stiffer consistency icing decorations. Just use thinner icing and freeze immediately. It's much easier on your hands. Try not to make yourself bend over a lot. Work with everything at or near eye level when possible. Take breaks at least every hour or so.

You will notice over the years that Lupus is what my doctor calls a building block for other diseases. Most people with Lupus do not JUST have Lupus. They usually end up developing other issues as well. Good luck. You'll find what works for you. PM me or email me if you have any questions or want to talk.

tonedna Posted 29 Jan 2009 , 11:45pm
post #10 of 34

I have lupus too..After a 2 day of decorating i just lay in bed all Saturday. I am anemic, suffer from fribromyalgia cause of it, have arthritis, really bad allergies and acid reflux disease. My lungs shut down once in awhile cause of stress( I do weddings) and I am still married icon_lol.gif

I dont like taking medicines, but I have found out that when I stop excersicing my body doesnt like it. Makes a huge difference on my body. Is hard having lupus and people look at me and even Dr's and they kind of refuse to believe I have it until labs are done.

I hate Dr visits. I think they are clueless into what to do..So I deal with it as best as I can.
Stay out of the sun, enjoy life, less stress possible. And do things that make you happy..I love to decorate and dance...
Edna icon_biggrin.gif

Carson Posted 29 Jan 2009 , 11:57pm
post #11 of 34

This is completely interesting to me. Things just keep happening and all I could think was "how could I have all these problems, they don't make sense", and now I'm just feel like maybe I'm on the right track.

Another question, have any of you found the weather affects you? After this horrible cold spell we had I felt as if I just couldn't function anymore. Everything just felt worse. I have been doing some heat/massage therapy techniques the oral surgeon told me to do on my jaw and it seems to make the pain a little more bareable now. And don't even get me started on the headaches!!

I really wish you all well and am very thankful everyone is so willing to share with me. And Edna, I'm pretty sure you like doing laundry too (sorry! couldn't resist - I won't turn this into another laundry thread!)

tonedna Posted 30 Jan 2009 , 12:01am
post #12 of 34
Quote:
Originally Posted by Carson

This is completely interesting to me. Things just keep happening and all I could think was "how could I have all these problems, they don't make sense", and now I'm just feel like maybe I'm on the right track.

Another question, have any of you found the weather affects you? After this horrible cold spell we had I felt as if I just couldn't function anymore. Everything just felt worse. I have been doing some heat/massage therapy techniques the oral surgeon told me to do on my jaw and it seems to make the pain a little more bareable now. And don't even get me started on the headaches!!

I really wish you all well and am very thankful everyone is so willing to share with me. And Edna, I'm pretty sure you like doing laundry too (sorry! couldn't resist - I won't turn this into another laundry thread!)




lol Carson, by the way.. I can tell the weather forecast by my body, same with my period. Lupus is affected by hormonal changes.
Edna icon_biggrin.gif

kaat Posted 30 Jan 2009 , 12:02am
post #13 of 34

The weather is my other nemisis! If it's hot and humid I get all rubbery, too cold my joints ache so bad I just want to stay in bed forever! Other than that .... icon_lol.gif

Carson Posted 30 Jan 2009 , 12:06am
post #14 of 34

My pelvis pain is so severe during my period that I can't even walk for a couple days. I feel like eveyone around me thinks I am overdoing my pms pain - but its nothing like that. The pelvis pain started really bad during my second pregnancy, as well as my hair loss and a number of other things. I just felt it might of been normal with the hormone changes, but my daughter is 2, so I shouldn't still have these problems! I'm am happier now that its way warmer out!

kaat Posted 30 Jan 2009 , 12:07am
post #15 of 34

OK this may be too much info...but
Edna - I struggled with anemia for a long time. My periods seemed to last FOREVER!!! Not sure if it's the same with you? Last year I got a Mirena IUD and wow! My iron and feritin levels came up and I feel SO much better! I know everyone is different and not sure if that affects you, but man, I'm glad I got that sucker! (So is hubby.... it delays him going for the ol' snipsnip!)

tonedna Posted 30 Jan 2009 , 12:09am
post #16 of 34

One thing I found is that the resolution is basically you taking care of your body as best as you can.

ziggytarheel Posted 30 Jan 2009 , 12:30am
post #17 of 34

I don't have lupus, but I wanted to add something for those who are looking for a diagnosis. Lupus and rheumatoid arthritis are very related and are often mistaken for each other in the early stages. Although I was ultimately diagnosed with rheumatoid, I do have some "lupus like" symptoms. These diseases don't always fit into neat categories. And there are many related diseases. I have a fabulous rheumotologist. They are out there...you just may need to look for a bit.

Carson Posted 30 Jan 2009 , 4:03am
post #18 of 34
Quote:
Originally Posted by ziggytarheel

I don't have lupus, but I wanted to add something for those who are looking for a diagnosis. Lupus and rheumatoid arthritis are very related and are often mistaken for each other in the early stages. Although I was ultimately diagnosed with rheumatoid, I do have some "lupus like" symptoms. These diseases don't always fit into neat categories. And there are many related diseases. I have a fabulous rheumotologist. They are out there...you just may need to look for a bit.




I guess that's why its so hard to come to a diagnosis. For me, the symptoms would come (and not always all at once) and then I would get better - so I would ignore it. I've been doing that for years now, but the last 5 months have been really awful. I am interested in other possible diagnosis...but I guess one thing at a time. I am just information collecting at the moment and have been keeping a "symptom journal" as kaat mentioned to take into my next doctor appointment as per her request.

cakesdivine Posted 30 Jan 2009 , 5:31am
post #19 of 34

All autoimmune disorders are difficult to diagnose because so many do mimck each other. At first they thought I had RA but once my sister was diagnosed and my symptoms were actually much worse than hers, her doctor saw me and diagnosed me with lupus as well and told us that it is hereditary. My other 2 sisters might have it as well but they don't seem to suffer from as many of the symptoms as my older sister & me. I am also diabetic (type 2), have endometriosis, gallstones (had a bad bout of a gallbladder infection 17 years ago, they treated the infection only then sent me home instead of removing it) So I do deal with gallbladder pain all the time. My weight goes up and down like a yo-yo for no apparent reason, demonstrating in certain dance classes (plies, upper level tap, any leaping at all) is totally out of the question. I have no more cartiledge in my knees, I have been told that this is due to the lupus. So I teach babies and super advanced kids that know terminology well. I'll never forget the first symptom that really frightened me. I was in church standing for the praise & worship (music) at the beginning of the service and all of a sudden the base of my skull on the left side felt as if a hammer just hit it and there was a strong pressure sensation, my left eye closed involuntarily and vision was blurred, My knees buckled ( I assumed from the shock of pain) and so I sat down, at the end of church I literally couldn't stand up, and the pressure and pain was still present but I could see fine by that point, I just couldn't get my legs to cooperate. It really scared me but by the next day I was totally fine. I get this sensation ever so often, usually when I haven't been taking care of myself or I am under alot of stress.

I at first felt like, if I go to a doctor and tell him all that ails me he will think I'm a hypocondriact so I put off going far too long. I am now going through menopause and that in of itself is quite an ordeal. The last 2 days I have been down with the flu (why I haven't been on here other than to answer a couple of PM) My gallbladder hurts like oh billy because I can't eat, my ribs are so sore from all the coughing and I feel like I did when I had mono 25 years ago! Like a train hit me. That feeling of every inch of my body aching reminded me of how I feel when I am in full blown lupus. So when I am able to stomach food again, I will tank up on the flax seed oil! I have too many cakes on the books to be immobilized by this disease.

ziggytarheel Posted 30 Jan 2009 , 12:11pm
post #20 of 34
Quote:
Originally Posted by Carson

Quote:
Originally Posted by ziggytarheel

I don't have lupus, but I wanted to add something for those who are looking for a diagnosis. Lupus and rheumatoid arthritis are very related and are often mistaken for each other in the early stages. Although I was ultimately diagnosed with rheumatoid, I do have some "lupus like" symptoms. These diseases don't always fit into neat categories. And there are many related diseases. I have a fabulous rheumotologist. They are out there...you just may need to look for a bit.



I guess that's why its so hard to come to a diagnosis. For me, the symptoms would come (and not always all at once) and then I would get better - so I would ignore it. I've been doing that for years now, but the last 5 months have been really awful. I am interested in other possible diagnosis...but I guess one thing at a time. I am just information collecting at the moment and have been keeping a "symptom journal" as kaat mentioned to take into my next doctor appointment as per her request.




One good thing is that there are treatments that are effective for both Lupus and RA. My doctors started me on those until the diagnosis was more sure.

You really do need an excellent doctor. My regular doctor had many accolades in his resume and offered to treat my RA if I wanted, instead of a rheumotologist. When I did finally get that first appointment with a rheumotologist, I found that her approach was quite different. She is not satisfied with ANY symptoms at all. For RA, there are some very effective treatments. I've been on Remicade (one of many treatments) for several years now. When I sit in the treatment room receiving my infusion every 8 weeks, the others in the room with me are always saying the same thing...this medication is amazing! We all felt as though we were just about non-functional, and now many of us are leading almost normal to completely normal lives.

Find a good doctor. icon_smile.gif

tonedna Posted 30 Jan 2009 , 8:42pm
post #21 of 34
Quote:
Originally Posted by cakesdivine

All autoimmune disorders are difficult to diagnose because so many do mimck each other. At first they thought I had RA but once my sister was diagnosed and my symptoms were actually much worse than hers, her doctor saw me and diagnosed me with lupus as well and told us that it is hereditary. My other 2 sisters might have it as well but they don't seem to suffer from as many of the symptoms as my older sister & me. I am also diabetic (type 2), have endometriosis, gallstones (had a bad bout of a gallbladder infection 17 years ago, they treated the infection only then sent me home instead of removing it) So I do deal with gallbladder pain all the time. My weight goes up and down like a yo-yo for no apparent reason, demonstrating in certain dance classes (plies, upper level tap, any leaping at all) is totally out of the question. I have no more cartiledge in my knees, I have been told that this is due to the lupus. So I teach babies and super advanced kids that know terminology well. I'll never forget the first symptom that really frightened me. I was in church standing for the praise & worship (music) at the beginning of the service and all of a sudden the base of my skull on the left side felt as if a hammer just hit it and there was a strong pressure sensation, my left eye closed involuntarily and vision was blurred, My knees buckled ( I assumed from the shock of pain) and so I sat down, at the end of church I literally couldn't stand up, and the pressure and pain was still present but I could see fine by that point, I just couldn't get my legs to cooperate. It really scared me but by the next day I was totally fine. I get this sensation ever so often, usually when I haven't been taking care of myself or I am under alot of stress.

I at first felt like, if I go to a doctor and tell him all that ails me he will think I'm a hypocondriact so I put off going far too long. I am now going through menopause and that in of itself is quite an ordeal. The last 2 days I have been down with the flu (why I haven't been on here other than to answer a couple of PM) My gallbladder hurts like oh billy because I can't eat, my ribs are so sore from all the coughing and I feel like I did when I had mono 25 years ago! Like a train hit me. That feeling of every inch of my body aching reminded me of how I feel when I am in full blown lupus. So when I am able to stomach food again, I will tank up on the flax seed oil! I have too many cakes on the books to be immobilized by this disease.





I am like you...I can barely eat, sometimes I live on tea and crackers and then some cake. Protein bars fill my need for protein. I can eat some meat here and there, but eventualy I gotta go back to basics, tea and crackers.. And then I am allergic to dairy foods, kind of sucks..
Edna

Sugarchic Posted 31 Jan 2009 , 5:42am
post #22 of 34

I personally don't have lupus but if you have symptoms you need to get checked. My aunt was diagnosed sometime last year with lupus and she has gone down hill.Her medication has not helped her. It has affected her kidneys last week they implanted something in her throat to start dialysis treatments. I think it has made her worse because we got a call that she is in intensive care because it is affecting her heart know.

Callyssa Posted 31 Jan 2009 , 6:23am
post #23 of 34

Carson- I wanted to tell you there is something else that may be causing your phantom gallbladder symptoms. It's called Sphinchter of Oddi Dysfunction (SOD). I have it and it's TREACHEROUS. It's soooo much worse than the attacks I went through before having gb removed. It actually feels exactly like the gb attacks, but 100 times worse. I have a very high pain tolerance; I had all five of my babies au naturale, and this is worse than all of my deliveries combined. Honestly.

After my last attack I researched online and found out about SOD and when I went to my Dr. and told him I was 100% certain this is what I had, had laughed at me and said, " I haven't heard that term in YEARS!" Sent me to a gastroenterologist who sent me for an MRI of that sphinchter ( and they have to trigger an attack to be able to see if that's really what it is.....NO FUN!!), and that's exactly what it is.

The worst thing though is the surgery to have it fixed has a fairly high rate of causing pancreatitis and you have to see a highly specialized Dr. to have it done. I'm still deciding whether I want to go through with it or not; I'm pretty certain I know what causes it for me (narcotics) and that seems to be a very common trigger for many people who suffer from it. Alcohol triggers it too for me. When I had my gb removed I was writhing and practically screaming in pain and they must have thought I was the biggest baby, but kept pumping me full of morphine, and now I know that's what was causing me so much pain in the first place! I was begging them to knock me back out and they finally did.

I'm not discounting at all your concern about having Lupus, but just wanted to tell you there might be something else at play as well. Oh, and it's much more common in people who've had thier gallbladders removed. Good luck.

julzs71 Posted 31 Jan 2009 , 6:23am
post #24 of 34
Quote:
Originally Posted by cakesdivine

I'll never forget the first symptom that really frightened me. I was in church standing for the praise & worship (music) at the beginning of the service and all of a sudden the base of my skull on the left side felt as if a hammer just hit it and there was a strong pressure sensation, my left eye closed involuntarily and vision was blurred, My knees buckled ( I assumed from the shock of pain) and so I sat down, at the end of church I literally couldn't stand up, and the pressure and pain was still present but I could see fine by that point, I just couldn't get my legs to cooperate. It really scared me but by the next day I was totally fine. I get this sensation ever so often, usually when I haven't been taking care of myself or I am under alot of stress.



This exact thing happened to me. It felt just like a hammer. I went to the ER and they said it has to be a tension headache. They tried to give me heavy narcotics, which before I told them absolutely none. I went to my family doctor the next day who diagnosed me correctly. There is a nerve that runs about the back of the skull that gets stretched or something. I think it is the occipital nerve. Don't quote me on that because I was in a car accident 15 years ago and lost my memory so sometimes I confuse words. Anyway he gave me Gabapentin. I woke up the next day, my whole body felt better than it had for 15 years. Headaches gone and all the pain in my body felt great.
My sister had been diagnosed with lupus and ra, now she is diagnosed with myasthenia gravis. I really think she has polymyostis, because it has more of her symptoms. She gets weak muscles that move around and can't swallow. She goes to the Neurologist who think they know everything and diagnosis you and won't listen to anything else. At first her doctors thought she was stressed. Finally she yelled at the Neuro guy and then he was nicer and helped her. She has been putting an estrogen cream on which she said seems to help. The doctor wouldn't even listen to her about that, the doctor said it didn't help.
My other sister only has lupus right now. She has the worst case of psoriasis and her gull bladder and arthritis are also bad. She has become addicted to pain medicines. She actually was put on house arrest because she was doctor shopping because of it. Before she was diagnosed she never did drugs.
Good luck with all your appointments. Ask questions, demand studies, make him research (that's why they make ALOT of money). I have had two nuerologist so far. One of them I called a jackass as I was leaving an office. Which for me is not the norm, I would never, except this time call anyone that. Refused to see him ever again.

Carson Posted 31 Jan 2009 , 5:00pm
post #25 of 34
Quote:
Originally Posted by Callyssa

Carson- I wanted to tell you there is something else that may be causing your phantom gallbladder symptoms. It's called Sphinchter of Oddi Dysfunction (SOD). I have it and it's TREACHEROUS. It's soooo much worse than the attacks I went through before having gb removed. It actually feels exactly like the gb attacks, but 100 times worse. I have a very high pain tolerance; I had all five of my babies au naturale, and this is worse than all of my deliveries combined. Honestly.

After my last attack I researched online and found out about SOD and when I went to my Dr. and told him I was 100% certain this is what I had, had laughed at me and said, " I haven't heard that term in YEARS!" Sent me to a gastroenterologist who sent me for an MRI of that sphinchter ( and they have to trigger an attack to be able to see if that's really what it is.....NO FUN!!), and that's exactly what it is.

The worst thing though is the surgery to have it fixed has a fairly high rate of causing pancreatitis and you have to see a highly specialized Dr. to have it done. I'm still deciding whether I want to go through with it or not; I'm pretty certain I know what causes it for me (narcotics) and that seems to be a very common trigger for many people who suffer from it. Alcohol triggers it too for me. When I had my gb removed I was writhing and practically screaming in pain and they must have thought I was the biggest baby, but kept pumping me full of morphine, and now I know that's what was causing me so much pain in the first place! I was begging them to knock me back out and they finally did.

I'm not discounting at all your concern about having Lupus, but just wanted to tell you there might be something else at play as well. Oh, and it's much more common in people who've had thier gallbladders removed. Good luck.




Before this thread I never really thought that my gallbladder problems could be lupus related...just meaning that I have never read it being a symptom...but it makes sense. I have been doing well, only had approx 4 attacks after my gb was out and when my doctor did the ERCP (scope) he said the opening to my duodeum was to narrow and he corrected it. I got violently ill after that procedure (when they told me I would be functioning back to normal that same day) and ended up in the hospital out of fear of pancreatits. I found that alcohol triggered at least one of those attacks, and the rest seem to be triggered by food. Good luck to you and I hope you get your gb pain solved, believe me, I know how you feel!! I remember my first gb attack I was standing in a grocery store aisle and thank god my dh was with me, I just looked at him and said "we have to leave now". By the time we got to the car I couldn't even walk anymore. Doctor's thought maybe it was an anxiety attack???!!?? I knew they were wrong...they couldn't deny it when I threw up green in the er waiting room.

Julzs71

Quote:
Quote:

She goes to the Neurologist who think they know everything and diagnosis you and won't listen to anything else. At first her doctors thought she was stressed. Finally she yelled at the Neuro guy and then he was nicer and helped her.




Why is it Doctor's always go to the stress thing first? Ya I have some stress but I also handle stress well. Its always the first thing my doctor goes to.

tonedna Posted 1 Feb 2009 , 12:54am
post #26 of 34

You think you handle your stress well, at an emotional level, but the body reacts differently..Thats why the doctor goes into the stress question. I handle the stress really
well, but my body eventually says, no more!
Edna

MnSnow Posted 1 Feb 2009 , 1:29am
post #27 of 34

Edna is so right!

I have a tendancy to take on too much at one time. I never relaized I was doing it until by other half stepped in and told me no more. He can see my limit where sometimes I can't. Since he has began doing this, I spend less down time in bed.

I never thought my life was full of stress...until I divorced it. I was under an extreme amount without realizing it. Live and learn. That's what most of this disorder is about. Learning to live with it and learning how to live our lives with it. And it is a learning process. Once you learn what you can tolerate and how to live within those limits, it's easier.

I never knew people with Lupus are not suppose to have children. I thought it was normal to be soooooo sick during pregnancy. I was very ill during my first pregnancy and felt on top of the world with my second. Little did I know I was in a flare with my first and in remission during my second.

Lupus has attacked my reporductive system, my lungs, my heart, my kidneys, my inner ear, my teeth.....anything with connective tissue. Because it is a connective tissue disease. I am on Plaquenil and will be for the rest of my life. Right now I am in total remission and I will fight with all I have to stay there.

Another thought about psorisis...you can get an arthritis from them. It's called psoriatic arthritis. My BFF has it. It's just as devestating as Lupus is and affects body systems the same.

Don't underestimate Lupus. It attacks in the strangest places with no warning. People have died from it and years ago (1icon_cool.gif the estimated life expectancy after diagnosis was 15 years. Not anymore. With treatment and careful life style, people are surviving a life span. As far as I know and with all the research I have done, there is No known cause of it nor is there a heredity factor. No one else in my family history has it, but stress is a definate trigger.

Carson Posted 1 Feb 2009 , 2:12am
post #28 of 34

If lupus is triggered by hormones, then it would make complete sense pregnancy would be hard!! I hate being pregnant, mostly because of the way I felt the whole time! I complained after my first pregnancy that it tooks 10 months for me to just feel "normal" again...and I meant my body (of course emotionally I would feel the effects after that long). My second pregnancy it just felt as if my body was falling apart, this is when my major pelvic problems started where it get impossible to even walk.

I guess I just feel that when the doctor asks the stress question my answer always seems to be...its the same or less amount of stress it was 2 months ago when I was feeling just fine. Guess over time it wears you down. I've never really attibuted any illness to stress, but I know being stressed doesn't help any illness.

Reproductively I have a real hard time concieving. It took me a year with both my girls. I always got a referral in to a specialist, just in time for me to become pregnant both times. I never (again, like the gallbladder) linked that to a lupus symptom, again, very interesting. Since I always got pregnant in the nick of time they never got to concerned and I was never tested for the reason for this.

I guess this is pretty complicated, its obviously hard to diagnose and I honestly don't know if this is what happening with me, just would like some kind of answers. I am learning a lot here, its good to hear all objective sides, since everyone I know knows nothing about lupus.

Carson Posted 1 Feb 2009 , 2:19am
post #29 of 34

[quote="MnSnow"]
Lupus has attacked my reporductive system, my lungs, my heart, my kidneys, my inner ear, my teeth.....anything with connective tissue.
quote]

Oh yeah, another thing, I look after my teeth better than most people I know, and lord and behold, they seem to be rotting out of my head with no real explanation! I am constantly getting fillings and having lots of work done (at the dentist 6 times in the last year). This is something that also started with my second pregnancy...always thought I was just blessed with bad teeth...

tonedna Posted 1 Feb 2009 , 3:31am
post #30 of 34

Lupus can affect any part of the body, that's why is an autoinmune disease. Can cause inflamation in any lining of the body. Hormonal changes, stress and sun are the biggest reasons
for flare ups. You can have children, but can cause flare ups. I had only one child and close shop.. You are not even supposed to use anticonceptives cause the hormones in them will cause flare ups. Anything that can get inflame in your body can be attacked by lupus. Even your brain. Is not a death sentence. Simply is about knowing you gotta take it easy excersice and eat well. And avoid stress and sun..
Edna

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