Hello, how are you? I am on a quest for answers. In 2004 I became very ill. A few months later I found out I had been diagnosed with West Nile Virus. Although I had been exposed and it had passed, what I am now living with is the after effects. This subsequently triggered dormant autoimmune disorders. Not too long after my mom passed away in 2009, I received an email about water contamination at Camp Lejeune in North Carolina. Being part of a military family and having lived in Jacksonville, I now understand where these dormant issues came from.
Fast forward to now. I am not too sure what I am dealing with. Lupus, West Nile, or after exposure to TCE in my drinking water. Did the water contamination come first, then the WNV trigger...then Lupus, Sjorgrens. I have lived with Primary Biliary Cirrhosis which has baffled MD's and was diagnosed with autoimmune hepatitis, which one MD stated I could only get from ingesting something from the environment.
Essentially, I guess, what I need is to learn how to live with what I have. Lupus and West Nile symptoms overlap. I never know which one I am dealing with. They mimic each other. I have joined a WNV support group and feel that this has helped, but I need to understand the Lupus aspect of this so I can learn to live with those symptoms.
Hi Jean,
Sounds like you have a full plate of health issues. There is nothing like starting with a very good rheumatologist. If you have one yet or not it is important that they don’t rush the time you pay them to sit and figure out what they need to do to help you and that they listen to you. If they don’t help you, don’t be afraid to find some one that will. Every one is different, my flares come from weather change, stress and lack of rest. If I get really bad I call the doc for prednisone. I typically just ride the flares out with a lot of rest and self inflicted tender loving care. There was a discussion here recently about people with Lupus being deficient in vitamin D. Our family doctor confirmed this with a blood test for me. Staying out of the sun is very important too. You will find this site very helpful and the members very friendly. There is no better way to learn about a disease than to talk to people that have it. Hope you find help and start feeling better soon!
I do have to agree with (Patter) you've got some serious issues going on and you definitely need a good rheumo for what you have and someone who won't ignore your diagnosis.
Jean Lupus and West nile are identical in symptoms to what they give people skin disorders/strokes/ seizures/nerve damage etc and you won't know which ones playing up...i've got A1 diseases over lapping autoimmune diseases and it's only through the A1 Diseases being stronger that i'm able to identify the difference sometimes.
Your actually in the same situation as myself but i dont have the West nile....regarding getting used to it and trying to feel not so much pain or symptoms is try not to stress to much as Lupus alone thrieves off it and makes your sysmptoms worse, your daily life you have to pace slower so your body does'nt take to much strain and always relax in between and days where your worn out totally, just rest and try to rebuild your strength.
If you lack concentration or foggyness best thing to do again is to rest...there's so much with both issues your dealing with but concerning Lupus itself reading threads besides will give you such a large out look at what your dealing with.
Your main issue is trying to get meds to help your immune system.
Thank you Patter. I believed that I had the best MD's for the last eight years until recently. Nothing was ever clearly explained to me, as I had been misdiagnosed with the WNV. And under these circumstances no one really wants to discuss it. I even stated to a neuro that I understand about the misdiagnosis, but now how do I deal with what happened to me. He just looked at me.
When I spoke with both MD's about the overlaping symptoms, they really werent too sure what to say. I have been presscribed meds for the Lupus and they all make me ill, even vit. D. And I am not being treated for the nerve damage. I havent been treated for anything really. Eight years like this and I have never been told what a flare is.
I have learned more from the WNV support group in the last month, than in the last 8 years. I thought I was the only one with this. When I mentioned that to the infectious disease MD, I dont think he realized how long the after effects stay with a person. I was surprised.
Now I am hoping to learn more with your group. Thank you for listening as well as responding, I am starting to feel better already. Validation is good medicine.
Patter said:
Hi Jean, Sounds like you have a full plate of health issues. There is nothing like starting with a very good rheumatologist. If you have one yet or not it is important that they don't rush the time you pay them to sit and figure out what they need to do to help you and that they listen to you. If they don't help you, don't be afraid to find some one that will. Every one is different, my flares come from weather change, stress and lack of rest. If I get really bad I call the doc for prednisone. I typically just ride the flares out with a lot of rest and self inflicted tender loving care. There was a discussion here recently about people with Lupus being deficient in vitamin D. Our family doctor confirmed this with a blood test for me. Staying out of the sun is very important too. You will find this site very helpful and the members very friendly. There is no better way to learn about a disease than to talk to people that have it. Hope you find help and start feeling better soon!
Let me introduce myself as one who has very few answers but a great desire to be a support person and an an active member of the Comic Relief Squad.
All these awful diseases suck and I am glad pepole with better minds than mine are looking for real answers amd real remedies.
hmmm
If I stick with you I may be able to have a balance of both sides of this bad penny: the concrete solutions and the whimsical solutions from dream-time-in the- future.
welcome and scoot over...is there room for one more?
Welcome to the group Jean. I am new myself so I don't have a lot of advice to give as I am learning day to day. BUT, having said that I have learned a great deal in the short time I've been here. I also apologize but I've been on and off here so my hands are really hurting quite a bit. I wish you the best of luck in a)finding a doctor that is knowledgeable in your symptoms and b)getting all the support and information you need for all that you are suffering with.....and as far as this site, I believe you will find a wealth of both...
Thank you Ann A. I have nerve damage in my brain. bilateral demylination they call it. Luckily I was able to finish my Master's, so at least the thinking portion of the brain still works. Chronic fatigue, but that can also come from the meds I take. Joint pain. I am not too sure what symptoms are what really. I feel ill mostly all the time.
I have said more than once to my friends that I want my life back, pre WNV. I have worked part time the last eight years and completed my master's in five years during that time. I am living, but for some reason recently, since I contracted pneumonia April 2011, I still dont feel well. I also have had costochondritis (sp?), the pain was severe like a fractured rib. I have been taking pain meds in the last year and wonder if that is why I feel sick. My Rheumo wants me to begin methotrexate. I am nervous about that. I have taken this before so I refer to it as chemo.
Seriously I dont even know which part of my body is affected by this. It is sad, you would figure after eight years I would know.
Ann, were you and your family at Camp Lejeune between the years of 1957 and 1987? Cause if you were, you were exposed to TCE in your drinking water. It was being dumped in the water system thinking it would wash out to sea. Well it went right into everyones kitchen. I have a FB group page dedicated to this. Have been researching this for two years, searching for answers to my questions there too.
Ann A. said:
I grew up in a military family and believe that my genetic predisposition for lupus was triggered by environmental factors found in some of places that I lived as well as some of the lifestyle choices that I made (such as using chemicals on my hair). I have now been living with lupus for 45 years. And like most people with autoimmune illnesses, I have more than one. One of my favorite rheumatologists taught me to focus on the symptoms. I first learned to identify early symptoms of a flare then to identify what triggered them in order to predict and sometimes avoid them. At age 65 I have ongoing symptoms that include fatigue, pain, and brain fog. But I seldom have the dramatic flares that send me to the emergency as they did when I was younger (stuff life peridcaridits, pleuritis, and costochondritis). I have had three total knee replacement surgeries and other skeletal issues that are derived as much from the use of corticosteroids like prednisone as from the lupus itself. I have been spared many of the more life threatening symptoms and consequences. I have not had nephriitis, or strokes, or seizures. I have not developed diabetes.
I always ask for copies of my blood work and so far all is fine. (But the DNA is elevated.) That is why I am getting confused. My husband said to me recently, ya know these medicines that they keep giving you that make you sick, might just be the wrong ones. Why take vit D if there is no deficiency. Maybe the plaquinel makes me so ill, cause it is the wrong treatment for me. This is where the confusion comes in. I might be dealing with the WNV after affects. I take other meds and none of them interact with the other.
I will continue to be a part of this group, thank you for your words of encouragement. I just may find answers to my questions here.
draginfli said:
Hi Jean,
You will find much information and support here! Patter is correct regarding the vitamin D deficiency - Ann A is a member who has much blog information regarding other vitamin and mineral deficiencies as well - she is also very willing to help us one on one to understand that information and also just to support and encourage us. Ann A along with many of us on this site is a super intelligent and caring lady with great advice!
As for which came first? The Chicken or the Egg? It is a question that many of us face with different diseases and after effects/side effects etc... Having the guts to get support and to also support others is I think one of the best things we can do for ourselves. So - you are certainly doing the right things.
I've learned so much from this support group and it has helped me adjust both physically and emotionally to having this disease. Also, I can fully express myself here when I have a bad/worse day and the folks here will support me with love and care - just as I support them back when I feel well enough to be on the computer.
I'm glad that you are here and that you found us! Welcome! Please stick around and your will find that not only you'll gather information, but you will also be able to share information with all of us!
My best friend said to me that she cannot believe that I am still alive. I know its not funny, but one has to laugh. I cant either. Neither does the infectious disease MD. I guess I still have some work to do before it is my time. Thank you for telling me that the symptoms are exactly the same. I feel relieved by that. I thought so, but just needed to read it with my own eyes. Now I can focus of treating all of them together, instead of trying to separate them.
What are A1 diseases? And as far as the rest, it seems since I finished my Master's and sat down for the first time in years, that is all I do. Its funny, I never really emotionally dealt with any of this and believe that I am now. I now have time to look at what happened to me and put it all together. It is shocking.
Tez_20 said:
Hello Jean,
I do have to agree with (Patter) you've got some serious issues going on and you definitely need a good rheumo for what you have and someone who won't ignore your diagnosis.
Jean Lupus and West nile are identical in symptoms to what they give people skin disorders/strokes/ seizures/nerve damage etc and you won't know which ones playing up...i've got A1 diseases over lapping autoimmune diseases and it's only through the A1 Diseases being stronger that i'm able to identify the difference sometimes.
Your actually in the same situation as myself but i dont have the West nile....regarding getting used to it and trying to feel not so much pain or symptoms is try not to stress to much as Lupus alone thrieves off it and makes your sysmptoms worse, your daily life you have to pace slower so your body does'nt take to much strain and always relax in between and days where your worn out totally, just rest and try to rebuild your strength.
If you lack concentration or foggyness best thing to do again is to rest...there's so much with both issues your dealing with but concerning Lupus itself reading threads besides will give you such a large out look at what your dealing with.
Your main issue is trying to get meds to help your immune system.
OK - now you really have me curious about your experience with vitamin D! Most of the people with whom I talk have not been advised to take supplemental vitamin D even when their test results come back indicating that their levels are insufficient or deficient. I really want to learn more about he physician who told you to take them when your blood levels were adequate. Are you sure that you don't have a malpractice suit here? OK, I'm just kidding about the suit. I can't imagine spending the energy,
I am one of those people who can no longer take Plaquenil. Took it 20 years ago and it stopped the discoid lesions from marching across my face and slowed down the destruction of my knees (largely because it reduced my need for Prednisone), I am being off Prednisone in the late fall and winter and then back on for spring and summer - my rheumy swears that it reduces my photosensitivity. But when I tried to go on for this spring it made me deathly ill and depressed. I was actually curled up in a ball crying about things I did 50 years ago.
One thing that you will hear over and over again is how uniquely we experience lupus. That means that we experience the medications uniquely also.
Thank you Janice! Humor is good medicine. Being with good friends who understand helps too. Unfortunately though, they are few and far between. I stopped talking to people about this. I only recently told my boss at work. I dont know what triggered it, I think she was "reprimanding" me in her loving way. And I mean loving. I am a teacher and we are trained to accept "criticism." Well, I guess I just did not want to hear it on that particular day. I got upset, started to cry, real professional, and just told her everything. How fed up I was, was tired of dealing with this alone, etc. Well, she immediately began researching and looking for MD's for me. By the next day she had a list and had practically made appointments. I looked at her and said I have seen these MD's already. I have gone down that long road.
I had visited 25 MD's before I gave up. I then hand picked the ones I wanted around me. It worked for a while, then my cardiologist up and left for florida. He was the only MD in the ER that knew something was wrong with my heart. Thank God for him. Everyone told him to not do an angiogram. Thank God he did, my artery was 80% clogged. He saved my life.
Lately my GP is telling me to see the rhumo. The infectious disease MD is telling me to see the neuro. I have felt and now believe they feel, there is really nothing they can do for me. I dont mind palliative care at this point either. I want to live my life how I chose, but need their guidance. Is it time for SSD? I think so. It has probably been for a long time.
Getting back to the point here, I am now beginning to tap into my dormant creative side. I am sewing, painting, making little videos. I auditioned for and was accepted into a prestigious local choir. Unfortunately, the music is classical based and I just didnt have the ear for it. I had just finished my master's and did not feel like committing myself to anything new at that time. And, love spending time at the beach. I always feel better there.
janice said:
Hi Jean,
Let me introduce myself as one who has very few answers but a great desire to be a support person and an an active member of the Comic Relief Squad.
All these awful diseases suck and I am glad pepole with better minds than mine are looking for real answers amd real remedies.
hmmm
If I stick with you I may be able to have a balance of both sides of this bad penny: the concrete solutions and the whimsical solutions from dream-time-in the- future.
welcome and scoot over...is there room for one more?
Thank you Angel312...I am hoping to learn more. As I had mentioned earlier, I have been dealing with this for eight years. I tried not to focus so much on it as I had other things I needed to accomplish. Now that the dust has settled, I am reflecting back on all that had occurred. It is shocking. My best friend has been my rock through all of this and feels that I need to write a book. What I should have done over the last years is to copy and paste all that I wrote about my life. I would have a book. Actually I am in the process of creating a childrens book.
I thought I had all the right MD's, but now I am not so sure. The lupus meds make me sick and my rheumo just threw up her hands recently. Well, I am throwing up mine. Need to take matters into my own hands now. We are our own best advocates. Angel312 said:
Welcome to the group Jean. I am new myself so I don't have a lot of advice to give as I am learning day to day. BUT, having said that I have learned a great deal in the short time I've been here. I also apologize but I've been on and off here so my hands are really hurting quite a bit. I wish you the best of luck in a)finding a doctor that is knowledgeable in your symptoms and b)getting all the support and information you need for all that you are suffering with.....and as far as this site, I believe you will find a wealth of both...
Ann, it will take time for me to absorb all that you wrote. I plan on reading this more than once. But for now, Vit D and any other meds that dont agree with me cause some type neuro upset. I dont feel comfortable in my skin and very nauseaus. I feel an overall genealized malise. Foggy, fatigued, uncomfortable, like I took bad drugs. I take eight pills a day. Two of which are twice a day. I have no bad interactions with these pills. I do believe now that if I dont need a pill I will have a reaction to it. Even Folic Acid makes me have that ill feeling. Drug sensitive I have come to call it.
I had encephalitis. I went through the demyelination process without knowing what was happening to me. It was a frightening experience. I had what I now know as the spinal signal that shoots up the spine into the back of your head. It felt like an electrical current that split up into four and four on the back of my head. Then all the insane neurological symtoms began. Everything around me was magnified 10 fold. Thus began the nightmare. I thought I had a team of MD's, but now I am not so sure.
What you smelled was probably a Burn Pit. All kinds of things are thrown in there and burned up. Even Agent Orange. Do not discount your illness to anything other than what you came across in the military. Over 133 bases did some type of chemical dumping. Camp Lejeune will go down in history as one of the worse.
I will write back later....have a good day.
Ann A. said:
JeanJeanne,
No. I was never at Camp Lejuene. My Dad was Regular Army and I think that my worst exposure came when we lived off base in Arizona - down near Sonora - where the wind blew the toxins left over from the mining and smelter of copper. When my husband was in the Corps, we never lived on a base. Between 8 and 10, when we lived in Chicago, I had continuous strep throat infections and developed rheumatic fever. My health was iffy through my adolescence and had severely declined by the time I was 21. This means that when I think about life before I became ill, I have to go all the way back to preschool.
I am intimately acquainted with the Valley Fever that is common in the area known as the Valley of the Sun, including Arizona. But it is caused by a fungal rather than a viral infection. I know something about the short term symptoms of WVN ( because I live in the South Eastern part of the US that can be called mosquito land). Everything that I have read about the long term consequences of WNV focuses on the on the consequences of severe encephalitis. It does not seem as though there is a general medical awareness of other symptoms that last past the stage of acute illness. I didn't look at your profile before I started this, but it definitely sounds like you might benefit from a consultation visit to a comprehensive care clinic at a major research university hospital.
I agree with the critics who say that clinic care is not very responsive in critical situations where immediate care is needed. But I do think they are the best places to go for diagnoses when the situation is too complex for stand alone physicians. Sounds like you need a team that includes an infectious disease specialist, a neurologist, and rheumatologist - just for starters. They might be able to sort out the symptoms. And at a research university they would know what, if anything, is coming down the pike for the long term consequences of WNV.
As for lupus there are really only four classes of drugs that are used as treatment (1) the NSAIDS, (2) the corticosteroids like prednisone (3) the antimalarials like Plaquenil, and the (4) the immunosuppressants like the MTX and Benlysta (the only drug created specifically for lupus). I have never taken the MTX but other people here on LWL have. And if I remember what they have written, the doses of this powerful drug that are given to people with lupus are much smaller than the ones given to cancer patients.
I don't know how any of these drugs will be influenced by your other conditions and your other medications. But it definitely sounds like you need to have a team of specialists working together to tell you what is going on and how best to proceed. I hope you live in a location that makes that feasible and easy.
I am really sorry to hear that the vitamin D which was prescribed as nutritional supplementation made you ill. I would love to hear more about your experience. I am writing a thesis on vitamin D. And I have never been able to finish a thesis without becoming more than a little bit obsessed by my topic. When I described my symptoms, I forgot to mention that I am extremely photosensitive (which makes hiding from mosquitoes at dusk a real drag - thanks for reminding me how important it is). If you aren't photosensitive you could use exposure to sunlight to synthesize your own vitamin D. It does seem strange after all the years of thinking of photosynthesis as a process of plant life to be dealing with the fact that all vertebrates need vitamin D to live and can synthesize it for themselves with adequate sun exposure which most people in the US, the UK, and Europe can only get for a few months of the year.
I am also lactose intolerant and therefore can't get any vitamin D from fortified whose milk. And one of my professors reminded me last week that they now fortify orange juice. Of course, this is the same professor who rails against the over consumption of fruit juice (She is one of those nutritionists who takes the position that it is just as bad as soda because of the high sugar content) instead of the whole fruit (the position that the sweet juice is our reward for eating the whole fruit which contains so much fiber and so many other health enhancing bioactive compounds).
You are very welcome here JeanJeanne. If you are old enough to remember the Gong Show then you understand why my brain wants to add "the dancing machine." I wish you the best in seeking adequate diagnoses, explanations, and treatments. I will offer you all of the support that I can. And I know the rest of your LifewithLupus family will too. These are great people. And they understand so much more and better than others. I did not know how lonely I was until I met them. Until I met Janice, no one understood that sometimes I just need to HOOOOOWWWWWL.
Yes I understand that Vit D is a supplement. I also have the same reaction with Folic Acid. Many over the counter supplements dont react well with the medicines I take either. Thank you for the links, you have provided me with much to think and read about.
Smelling Benzene in your drinking water is another smell one nevers forgets. I was a young girl when I smelled that. I am now making connections to odd occurrences during the course of our life in the military.
There is nothing that can change what happened, I just need to learn how to make my life better.
Ann A. said:
Dear JeanJeanne
I wish you the best in understanding your health issues and figuring out which medications and nutritional supplements work for you. Vitamin D is not a medicine. It is a nutrient that our bodies are supposed to make from exposure to the sun, Because we do not have sufficient sun exposure we are asked to take it as a supplement.If you are sufficient in vitamin D because you have been taking the supplement, then you will no longer be sufficient when you stop taking it. I respect your decision to stop taking it.
Instead of writing so much, I should have simply given you the link to the Vitamin D Council and Grassroots Health
The environmental pollutants to which I was exposed while growing up in Arizona in the 1950s and 1960s were not from a hidden military or corporate agenda. The air and ground water pollutants produced by the open and legal mining and smelting of copper are well known and well documented. While the Copper Queen mine which was located in Bisbee and the Copper Queen smelter which was located in Douglas are no longer in operation, copper mining is still an important economic activity in Arizona. It is also a hot topic as the population has been alienated by 100 years of industry abuse.
I actually think alot of we have to laugh in general that we're still here with what we've gone through, it's a living nightmare at times but don't even try to work out which symptoms are coming from what as it's pointless with lupus and West Nile being identical regarding symptoms.
Regarding the plaquenil your on that's mainly for skin trouble and DLE which i have and it helps the joints abit but i've just come off it after spending a year and half on it as it's stopped working, so i've been moved onto another drug which is a chemo drug the same as the methotrexate which is surposed to be good for RA and joint problems but you do have to be monitored regulary with bloods regarding your organs as i'm having to with the new drug i've started as i've got SLE also....the stronger the drug helps to surpress the immune system from attacking our own body's.
A1 Disease's regarding myself as we all have different issues is Sjogren's disease/Antiphospholipid Syndrome (Hughes Syndrome)/Raynauds Phenomenon/DLE/SLE the other's on my profile are autoimmune Diseases which have come involved with it.
I'm really pleased you was able to finish your masters degree and "Congratulations"...yes when you do look at it, it is shocking what it takes alot of us down to regarding our minds and mobility...it's hit my well in the last 2yrs but my hubby swares he's seen alot more in the last year.
Try and keep your chin up as the saying goes but keeping a steady life to which your body needs will help you cope alot better besides like i've said.
((Love & Hugs Terri)) xxx
JeanJeanne said:
Thank you Tez_20!
My best friend said to me that she cannot believe that I am still alive. I know its not funny, but one has to laugh. I cant either. Neither does the infectious disease MD. I guess I still have some work to do before it is my time. Thank you for telling me that the symptoms are exactly the same. I feel relieved by that. I thought so, but just needed to read it with my own eyes. Now I can focus of treating all of them together, instead of trying to separate them.
What are A1 diseases? And as far as the rest, it seems since I finished my Master's and sat down for the first time in years, that is all I do. Its funny, I never really emotionally dealt with any of this and believe that I am now. I now have time to look at what happened to me and put it all together. It is shocking.
Tez_20 said:
Hello Jean,
I do have to agree with (Patter) you've got some serious issues going on and you definitely need a good rheumo for what you have and someone who won't ignore your diagnosis.
Jean Lupus and West nile are identical in symptoms to what they give people skin disorders/strokes/ seizures/nerve damage etc and you won't know which ones playing up...i've got A1 diseases over lapping autoimmune diseases and it's only through the A1 Diseases being stronger that i'm able to identify the difference sometimes.
Your actually in the same situation as myself but i dont have the West nile....regarding getting used to it and trying to feel not so much pain or symptoms is try not to stress to much as Lupus alone thrieves off it and makes your sysmptoms worse, your daily life you have to pace slower so your body does'nt take to much strain and always relax in between and days where your worn out totally, just rest and try to rebuild your strength.
If you lack concentration or foggyness best thing to do again is to rest...there's so much with both issues your dealing with but concerning Lupus itself reading threads besides will give you such a large out look at what your dealing with.
Your main issue is trying to get meds to help your immune system.
Hi Jean, Oh BOY !!! that's a loton the table for you deal with . Well having LUPUS now for a 15months (Knowningly) , the main thing is to get the rest that your body requires, at crazie moments -B4 it happens , sounds crazie i know but hay ,that's what it is .... LOL and also if you are taking ANY meds. make sure that you take them, keep the doctor appointments, and doeat a healthy meal . That 's about all that i can say to you and pray !!! ,keep you head up and keep it moving ( fight to LIVE Livng with LUPUS ) , it do have it's chanlleges . And PERAYER goes along way !!... Beverly L.
Thank you Beverly L. Yes, I do have alot on the table. I believe I have had this since I was 14. That is when the rash first showed up. Rest is important, but I am tired of resting. I am finding no relief. Good days and bad, I try. I fight, I am tired now. I am going to a nutritionist soon, so that will probably help food wise. I always felt that I ate well, just need some new ideas. Thank you for your words of support.
Beverly L. said:
Hi Jean, Oh BOY !!! that's a loton the table for you deal with . Well having LUPUS now for a 15months (Knowningly) , the main thing is to get the rest that your body requires, at crazie moments -B4 it happens , sounds crazie i know but hay ,that's what it is .... LOL and also if you are taking ANY meds. make sure that you take them, keep the doctor appointments, and doeat a healthy meal . That 's about all that i can say to you and pray !!! ,keep you head up and keep it moving ( fight to LIVE Livng with LUPUS ) , it do have it's chanlleges . And PERAYER goes along way !!... Beverly L.
No problem - that's what we are here for , to support each other and pray for the best !!!! take care and hope that you feel better soon.... Beverly L.
JeanJeanne said:
Thank you Beverly L. Yes, I do have alot on the table. I believe I have had this since I was 14. That is when the rash first showed up. Rest is important, but I am tired of resting. I am finding no relief. Good days and bad, I try. I fight, I am tired now. I am going to a nutritionist soon, so that will probably help food wise. I always felt that I ate well, just need some new ideas. Thank you for your words of support.
Beverly L. said:
Hi Jean, Oh BOY !!! that's a loton the table for you deal with . Well having LUPUS now for a 15months (Knowningly) , the main thing is to get the rest that your body requires, at crazie moments -B4 it happens , sounds crazie i know but hay ,that's what it is .... LOL and also if you are taking ANY meds. make sure that you take them, keep the doctor appointments, and doeat a healthy meal . That 's about all that i can say to you and pray !!! ,keep you head up and keep it moving ( fight to LIVE Livng with LUPUS ) , it do have it's chanlleges . And PERAYER goes along way !!... Beverly L.
