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bonnie
01-26-2007, 01:05 AM
My name is Bonnie, I'm 26 and was diagnosed with Lupus 5 years ago, shortly after I married my sweet husband. He's the one who found this site for me! We live in southern california with our 3 dogs and I work from home. We want to start a family as soon as possible but that desire has brought up all new feelings and fears about being sick. I feel like I have handled this all the best I can but now that we are trying to get pregnant it feels like a whole new burden.

I am so fortunate to have made it past the all important 5 year mark without any major organ involvment. My joints aren't too bad either, mostly it's the fibromyalgia and neuropathy that really affect my quality of life. My doctor feels there is a good chance I will feel better pregnant, which seems too good to be true, but I won't argue. If I am lucky enough to have a baby he also assures me that I can expect a flare soon there after.

I know there are a lot of moms and soon to be moms on this website which is why my husband chose it out of all of them, plus he loved that spouses and family were welcome to post. I worry about the same things everyone here does. Sometimes I feel like I'm watching from the outside and I just can't participate like healthy people can. I feel like I have this great life that I can't always enjoy the way I want to.

I have been reading the site for a few weeks now and I just regret not finding it so much sooner! It really makes me feel like other people know what I'm going through and I have found so many answers, because so many people had the same questions I had. Thanks for being here...Bonnie[/i]

ButterflyRN
01-26-2007, 05:10 PM
Welcome Bonnie! You will find many caring people on this website to share the good times and the bad time with. I look forward to talking with you on future posts.

Missy
01-27-2007, 06:44 PM
Welcome, Bonnie! We're glad to have you here!

mnjodette
01-28-2007, 06:14 PM
Glad your husband found this site for you - that's a very supportive thing to do! You'll find a lot of good information and even more good support. Welcome to the 'family!'

Jody

Saysusie
01-28-2007, 10:04 PM
Hello Bonnie - fellow Southern Californian. Where in SoCal are you?
I am also very happy that your husband found this site for you. Please tell him that he is welcome to post at anytime and ask any question that he needs. We are here to help you and to help him to navigate through this illness.
You stated that you work from home.. that is wonderful. What do you do (if I am being nosy..just let me know) :lol: :D :)
We want you to know that you are not alone, there will always be someone here who understands what you are going through, who has an answer for you or who can give you good advice. Mostly, we want to be here to support you, offer you and your husband comfort and information!!

Welcome to our family - both of you!

Peace and Blessings
Saysusie

littlered
01-29-2007, 12:17 PM
Welcome, Bonnie! This site has been a true Godsend to me and to the others I am sure. I've gotten more straight out information, advice and empathy from my family on this site than I ever got trying to figure out this disease on my own through the Internet, books or (god forbid) the doctors. I'm glad you are here! Love, kathy

Kokopelli
01-29-2007, 02:00 PM
Welcome to the site Bonnie. Glad you and your husband found the place.

bonnie
01-31-2007, 11:53 PM
Thanks everyone for making me feel so welcome! Saysusie, we live in LA (hollywood hills) and Santa Barbara. My husband works on and off in LA (actor) but SB is really where we feel at home so we tend to split our weeks between the two.

I do financial planning, research and such for my family's business which is investment. They are very understanding of my illness and I'm glad I can help. I have to travel once or twice a month to do business in person but for the most part I get to do everything online or on the phone and in my PJs!

I recently met a doctor in santa monica during my work that helps groups of people work more efficiently. She had a lot of experience working with people who have illnesses that effect their cognitive function, particularly lupus. She suggested I see a doctor in SM that is very experienced with autoimmune diseases. He has a phd in family medicine and a phd in psychology, he incorporated holistic and western medicine and most interestingly he focuses on biopsychosocial medicine which I found really interesting in college. He had a good sucess rate of getting people into remission and keeping them that way. I won't get my hopes up too much but it seems interesting. btw she said he was Gweneth Paltrows doctor which I thought was a little weird for a doctor to drop names right! who says she's the best judge of charecter:)

littlered
02-01-2007, 08:21 AM
that is kind of funny. I personlly can't take Gwyneth Paltrow...it's like, she has one expression, the same one for all situations. Here's Gwyneth trying not to get killed by someone: :? Here's Gwyneth having ababy: :? Here's Gwyneth as a wall street banker: :? Gwyneth ecstatic: :? LOL
I however, LOVE her mom, Blythe Danner (I think that's right.) anyhow, welcome.

Saysusie
02-01-2007, 08:28 AM
biopsychosocial medicine - the name itself pretty much says that it covers all aspects of the person and the illness. I am very interested in her methods. Please let us know how your first visit with her goes and tell us what you think? It sounds very intriguing and it fits into what I personally think all doctors should do when dealing with people with chronic diseases.
Keep us posted, especially me because it has truly peaked my interest.
I am glad that you are being realistic and hopeful at the same time, I think that you will have a much better experience if you maintain that frame of mind!
Your job sounds very interesting! I worked for the County of San Bernardino and did my last five years for them in a work-at-home position where I, too, worked in my pj's :lol: Once you are able to work from home, the thought of showing up to an office at a prescribed time becomes very unattractive - especially when dealing with a chronic illness. I am happy that your job is understanding of your illness, that alleviates a large amount of stress in and of itself!
I hope that you find everyone here is kind, informative, supportive and understanding. I am happy that you are here :lol:

Peace and Blessings
Saysusie

Saysusie
02-01-2007, 08:30 AM
Littlered... How funny!! Those are my exact sentiments about Paltrow. I, too, have always loved Blythe Danner. But Gwyneth is so boring to me!!

:D
Saysusie

bonnie
02-02-2007, 12:47 AM
I agree, I thought the whole G. Paltrow thing was enough to put me off the whole deal. The looking at the whole picture thing medically really interests me too though. I loved my biopsychosocial psych class in college so much. It made so much sense.

When I made my apntmnt. they asked me to make sure I had an hour and a half to spend with the doctor, wow that's a change! my doc can barely spend 5 min. in a room with me. He's the best there is but he is just overwhelmed. My apntmnt isn't until next thursday and I will absolutly let you know how it goes.

If your really curious they have a website (it's a whole intergrative team of doctors and therapists+ accupuncture and massage) www.akashacenter.com

I am seeing Dr. Edison De Mello, fun name huh. As far as I know you need a referal to see them but if you are interested it's worth trying to get in. Of course the insurance system seems very put off by this kind of medicine so you have to pay out of pocket. Glad you don't think it sounds totally hokey.

justdafacts25
02-03-2007, 11:35 AM
Hello from a newbie!
Hi out there. I wanted to introduce myself to everyone. Iíve been searching the web for info about lupus and found this board. Iíve never thought about joining a board before, but after reading through some posts, Iím happy I did. I just want to say thanks to everyone for the support you offer here

IloveHistory
02-03-2007, 02:15 PM
Hi Bonnie and Justdafacts25!

Welcome to the Forum! :D

Just remember that anytime you need to vent, seek information or just chat, we're here for you! :D

Keep well! :)

justdafacts25
02-03-2007, 05:43 PM
Thanks for the Support.
I just joined this board and have been reading through a bunch of posts. I wanted to tell you all how much I appreciate all the support you give one another. I think it will be really helpful for me to read what other people are going through. So, thanks!

justdafacts25
02-05-2007, 09:40 AM
hey bonnie & ilove history

Found an interesting film today
While procrastinating at work, I was looking for info, support about lupus. I came across this interesting video on a site called realhealth.tv that I thought was really helpful, so I wanted to share it with you all http://www.realhealth.tv/site.html?goto=31&vid=34&vo=0. It was nice watching someone talk about what they are going through and how they get through it. Hope you like it!

IloveHistory
02-05-2007, 10:58 AM
Hi Justdafacts25!

Thanks SO much for the post! :D I'm going to check it out right now!

Keep well! :)

msdawnie44
02-07-2007, 09:31 AM
Hello Everyone,

I am a newbie.....just found this site and I am glad I did.....I have a question...How long did it take you all to find the right doctor??? I have had lupus symptoms since I was a child (newly put 2+2 together) leg pain, headaches (some severe) list goes on and diagnosed with Epstein Barr virus about 10 years ago....and within the 4 years have noticed that my symptoms seem to get worse....now my ANA's are up and coagulants are high (35). I have every symptom of SLE.....my rheumotogist (sorry for spelling) said I have to have all the positives on the blood work to be diagnosed with Lupus.....even though I had 4 out the 8 test done and all of the Physical symptoms.......Need sugestions....Frustrated in Texas can you all help me???

MARYCAIN
02-07-2007, 03:12 PM
Unfortunately, there are many diseases that can mimic the symptoms of lupus, so it can be very difficult to diagnose. One famous study found that on average it took patients seven years and four different doctors to get an accurate diagnosis. Although ANA is a basic screening test for lupus, it isn't enough to make a diagnosis, because a positive ANA can occur in many conditions, and in many healthy people with no underlying disease. So doctors have to look for other abnormalities in your blood or urine, and try to find a pattern that correlates to your symptoms. Often this takes time and patience because the pattern hasn't fully developed. Since lupus affects everyone differently, each person's symptoms will be different - and many symptoms common in lupus, such as fatigue and headache, are common in so many other conditions that they are not part of the diagnostic criteria for lupus. So you might want to talk to your doctor and find out if he thinks lupus is a likely diagnosis, or is he thinks you have something else going on. If he thinks lupus is possible, but you don't meet enough of the criteria to satisfy a diagnosis, ask him what diagnostic criteria he uses, and if additional tests would help him clarify his diagnosis. If he can't give you an answer, then it might be time to look for another doctor.

msdawnie44
02-07-2007, 04:05 PM
I have with my md he is 99.9% sure...because i have all the physical symptoms.....Thank you for responding!!

bonnie
02-10-2007, 07:39 PM
So I've had a few visits with this new intergrative medical team that I posted about earlier. I was concerned that it would be new age voodoo, in reality it turned out to be the complete opposite. It was western doctors with eastern philosophies.

The head doc spent three hours with me letting me discuss every symptom I had, absolutly everything going on with my body, then my emotional state, my family, friends, major life events, stres level and on and on and on. They introduced me to every doctor on staff that would be helping, obgyn (trying to get preggers), the shrink, the naturopath, the accupuncturist.

I was given the most thorough physical exam I had ever recieved, but it was also the least invasive, in a room that smelled like lavender and lemongrass, in the softest hospital gown of all time! Yet not a bit of it smacked of voodoo. They aren't at all new agey, earth mothery, instead most of them looked straight out of a J Crew catalogue.

They were just very knowledgeable, patient, thorough, and belive strongly in comunicating constantly with each other, your other doctors and you!

Since my Lupus seems well controled but my fibromyalgia has me in constant pain and discomfort that is their focus. We will see what happens in the next weeks but they think with intergrated care and extreem focus on the mind body connection that I can be cured of my pain, sleeping and stomach problems. They can't cure lupus but they seem confident that they can cure fibromyalgia.

I had a series of extreem emotional traumas before I got sick and my reg. rheumy and these docs feel that the body often starts hurting itself in an effort to distract you from emotional trauma.

I had my first trial run of accupunture, just a few pins to make sure it didn't aggravate the fibromyalgia (sometimes it makes it worse) and I really did feel some relief so I can't wait to continue, I had a bit of cog-behavioral therapy which really helped my anxiety. More than anything I feel like I finally have some power over my own body for the first time in years.

I know all of this is hard to swallow, it is for me too, or that it can improve lupus symptoms or eliminate fibromyalgia symptoms. I know hearing about cures can (has always benn for me) infuriating so if this post upsets anyone I will gladly not post about it again, but I would love to share my progress with the board.

If anyone is interested you can read Dr. Sarno's "healing pain" book, look for intrgrative medical facilities, find an accupunturist (great for relieving symptoms during pregnancy that you can't treat w/ drugs but they should be accredited and have studied in a 5 year program).

MARYCAIN
02-10-2007, 08:22 PM
I would never discount the power of the human mind - it's far stronger than most people realize - just look at conversion disorders, or hysterical blindness. If the mind has that power, why not learn to tap its strength for positive things? Even if they can't "cure" lupus, just learning to relax and manage stress has enormous healing benefit. I just wish these doctors could export their practice methods to a few other doctors! Keep us posted on how it goes, and please share any tips or tricks you learn with us! My rheumie and my OB/GYN both practice holistic medicine, including accupuncture, naturopathy and biofeedback - I wish more specialists did.

Missy
02-11-2007, 11:55 AM
So glad to hear things are going well for you, Bonnie. I've found acupuncture really helpful as well.

Good luck and keep us posted!