PDA

View Full Version : A little lost; A little confused, but happy to find this place :)



StarPhire
12-08-2012, 01:34 PM
Hello to all
My name is Blu. I was diagnosed with SLE in late 2009. I woke up one day with a severe case of Edema in my legs and feet. I didn't know what Edema was until the first of many hospital visits, I thought I just had some really weird swelling. I was feverish and had joint pain. I went to the ER several times and was tested for everything.. well, apparently not "everything". I finally found a GP that would take my insurance after about a month of being sick and pretty darn confused. He ran a battery of tests, not telling me what they were at the time. He said he had a "feeling" and went with it. Two other people at the clinic agreed with him on his "feeling". One month later I was called into his office and told I had Lupus. I was like : "I have what??". From that moment on my life became a very confusing and uncertain reality. I ended up on Prednisone and using a walker. I am a dancer, artist and performer, so this was a blow, to say the least. I was last told I was in Remission, or at least the Disease had become inactive.

During that time, the only Rhuematologist I ever saw wanted to hospitalize me immediately; until my insurance was run through their hospital. Then I was told I had no AI whatsoever and was sent away. My GP was pissed. He mumbled all sorts of things while frantically taking notes about it. He continued to treat me and said it was an unfortunate fact in the DFW area, that many people on my type of insurance (medicaid) were treated that way. So, I of course started doubting again, and questioning whether or not the diagnosis was right. Anyway, I moved away, and being that I was better, I stopped my medications. I've been fine for over a year now. Until recently. I've started feeling some of the familiar joint, bone and muscle pains and what I was told is "Lupus Fog/ Brain Fog". I have a lot of faith in the Dr. that diagnosed me. He is renowned in the Dallas area and has achieved Physician of the Year here in Texas, a few times. He treated me for over a year for Lupus and has been steadfast about holding to his original DX. I'm unsure of what to do now. I honestly tried to "forget" it ever happened, but I just don't think that's going to work. Okay, so now that I've introduced myself with a ridiculously long letter, how about I meet some of you? lol. Any thoughts, advice and/or stories are welcome. More like, needed! Thanks to whomever endured this ^ thing I wrote :)
~ Peace, Blu (StarPhire)

tgal
12-08-2012, 02:10 PM
Before I begin let me welcome you to the WHL family! We are very glad that you found us

sadly, yours is a story we hear all too often. Too many doctors do not understand Lupus and do not understand that a) there is no single test for the disease and b) that our test results can go from normal to abnormal on any given day. It sounds to me like your original doctor was right on the money and you need to follow his advice.

Most likely the reason you went into a period of decreased disease activity is because of the meds you were on. They were doing their job. Going off off them is most likely why you may not feel as well now. Lupus does not go away. He can be controlled. It can go into inactive periods but it doesn't go away.

Please go back to your doctor and get on your meds. Don't let this disease get out of hand. It can be very dangerous if that happens.

you are now a part of our family and we will be here with you on this journey. Feel free to ask any questions that you have. Vent, cry, rant or simply talk. That is what we are here for. Weekends are a bit quiet around here so don't be discouraged if you don't get many responses. More people are here during the week and they will go through and see the posts they missed.

I look forward to getting to know you and don't forget, you are not alone

izzycolon
12-08-2012, 03:26 PM
BLU i JUST WANT TO SAY A PRAYER FOR YOU AND WISH YOU HAPPY HOLIDAYS AND i PRAY YOU GET BETTER asap...........FROM nyc.........

iZZY

Nicole
12-08-2012, 08:55 PM
Hi Blu,

Welcome to the board. As Mari said, I hope you can get back to your doctor and start taking your medicine again. I think it is easier to keep Lupus under control if you do it before you get real sick.

That is neat that you are a dancer. I hope you are still dancing and performing. Sounds like fun.

Nicole

steve.b
12-09-2012, 12:47 AM
hi blu,

yes lupus can go into remission.
i had just over 12 months of next to no activity.
unfortunatelly i also have had it come back again.

please seek your doctors advice.
lupus without medication is dangerous.
lupus with medication, should be able to be controlled.

you trust the doctor.....
go seek his advice.

kim,l
12-09-2012, 01:37 AM
welcome to whl family hugs kim

StarPhire
12-09-2012, 02:19 AM
Thanks so much to everyone. Unfortunately I moved away from the Dallas area over a year ago. I'm back home in Austin, so I can't go back to the Dr. I had before. I have decided to seek out a Rheumatologist here, though, and very soon. I have had a hell of a time with all of this, and it is so nice to have people understand where I'm at.I had very little support during the time I needed it most. Honestly at times I was treated quite badly by my ex and his family because I was "lazy" ; I didn't look sick to them, or fit their idea of what a person with Lupus should (?) be, I suppose. I'm surrounded by a much better support system now ( and I found y'all ). I'm not really looking forward to starting all of this over again, frankly I'm quite scared of the whole thing. I've never been one to go to doctors or take meds ; I've studied Herbalism for many years, but it's very difficult to track downs herbs that suppress the immune system, safely anyway. I am contacting my insurance co this week to help locate a rheumatologist, and hopefully will be able to get back on track very soon.

Nicole, nope, lol, Prednisone took care of that for me! I'm in better shape now, but still have a ways to go. It's only been in the very recent months that I've been considering stage again.. we will see :)
Thanks again! Peace ~ Blu

StarPhire
12-09-2012, 02:24 AM
hi blu,

yes lupus can go into remission.
i had just over 12 months of next to no activity.
unfortunatelly i also have had it come back again.

please seek your doctors advice.
lupus without medication is dangerous.
lupus with medication, should be able to be controlled.

you trust the doctor.....
go seek his advice.

Steve, may I ask, when it came back was it a slow process? As I had stated I just recently started having joint pain again, along with some bone pain and a general feeling of yuck. I'm sure it's different for everyone; I just want to hear from others what they have experienced.
~Blu

jolynnhughes
12-09-2012, 03:00 PM
Hi Blu! Welcome aboard. Do you mind sharing the name of your doctor? I too live in the DFW area, and I am looking for a new, good rheumatologist. I've been to two so far, and while I like certain things about each one, I'm not happy with either overall. It sounds like you were diagnosed pretty quickly. Trust me, that's a blessing. I'm still trying to get answers, and I've been sick for four years now.

Glad you found us, and I hope you get the help you need so that you can continue to practice your craft/passion.

StarPhire
12-09-2012, 05:25 PM
Hi Jolynn,
I could swear I replied to 2 other people on this, but I don't see them, hmm. Well, the Rheum. clinic I went to was the one that sent me away (Plaza Rheumatology Clinic in Ft. Worth) - My doctor is was/is at a vlinic in Dallas off Ross. John Richmond. He has been practicing family medicine for a very long time and has achieved much recognition in TX. He was a great Doc. Explained everything very well and was very thorough. He works with many people with chronic illnesses so he may be able to help with finding someone. Best of luck to you!

steve.b
12-09-2012, 08:01 PM
Steve, may I ask, when it came back was it a slow process? As I had stated I just recently started having joint pain again, along with some bone pain and a general feeling of yuck. I'm sure it's different for everyone; I just want to hear from others what they have experienced.
~Blu

i never actually stopped taking my medication.
i had reduced it dramatically, and with my doctors guidance, we were looking at stopping some more at my next appointment.

i found that i did not hurt much more, rather the fatigue was more severe.
then the aches came later.

as you said everyone is different....

Saysusie
12-10-2012, 11:57 AM
Hello and Welcome to our family;
I do hope that you are able to find a good rheumatologist (unfortunately, too many of them could care less about us!) and/or primary physician who takes you and your symptoms seriously. It is important that you get back on your meds as Lupus can run rampant without them. Also, do be VERY careful about trying herbal remedies. Many of them can aggravate our symptoms and can even bring on new symptoms.
You are right, ignoring this disease and pretending that it did not happen is a very bad decision; one that could be fatal. Please do read through all of our forums to find some of the ways that our members have written about to deal with flare ups, to help avoid future flare ups, and how different medications work for different symptoms.
You must remember that Lupus does not affect any of us in the same way, so our treatment regimen and medications have to be tweaked for each of us personally. Just as Lupus affects us differently, so are our periods of remission different and our flare ups are different.
We are here to help you to learn as much as you can about this disease and how it affects you so that you can manage it as best you can. I wish you the very best and I am glad that you decided to join our family.

Peace and Blessings
Namaste
Saysusie

StarPhire
12-11-2012, 12:21 AM
Hi Blu! Welcome aboard. Do you mind sharing the name of your doctor? I too live in the DFW area, and I am looking for a new, good rheumatologist. I've been to two so far, and while I like certain things about each one, I'm not happy with either overall. It sounds like you were diagnosed pretty quickly. Trust me, that's a blessing. I'm still trying to get answers, and I've been sick for four years now.

Glad you found us, and I hope you get the help you need so that you can continue to practice your craft/passion.

ok, I'll try this again, lol. For some reason I'm not seeing my replies posting. My PCP/GP was Dr. John Richmond in Dallas off Ross. (HealthCareClinics) He was the Doc that diagnosed me. The Rhumy was at Plaza Rheumatology in FT worth. They are the ones that sent me away. I never did find a different Rheumatologist before I've moved back to Austin. I believe Dr. Richmond could help you find one, though. He was really great.

StarPhire
12-11-2012, 12:27 PM
Hello and Welcome to our family;
I do hope that you are able to find a good rheumatologist (unfortunately, too many of them could care less about us!) and/or primary physician who takes you and your symptoms seriously. It is important that you get back on your meds as Lupus can run rampant without them. Also, do be VERY careful about trying herbal remedies. Many of them can aggravate our symptoms and can even bring on new symptoms.
You are right, ignoring this disease and pretending that it did not happen is a very bad decision; one that could be fatal. Please do read through all of our forums to find some of the ways that our members have written about to deal with flare ups, to help avoid future flare ups, and how different medications work for different symptoms.
You must remember that Lupus does not affect any of us in the same way, so our treatment regimen and medications have to be tweaked for each of us personally. Just as Lupus affects us differently, so are our periods of remission different and our flare ups are different.
We are here to help you to learn as much as you can about this disease and how it affects you so that you can manage it as best you can. I wish you the very best and I am glad that you decided to join our family.

Peace and Blessings
Namaste
Saysusie
Hello Saysusie, Thanks for the welcome! First I must be clear about something I feel very strongly about; as someone who has studied herbal medicine for many many years, I know there are NO safe immune suppressors that can be used for Lupus. I have searched and searched. There are immune suppressors out there, but, I would never recommend using them to anyone without the very close supervision of a doctor. I have had to stop taking many herbs that I used regularly, for the sheer fact that many and most "common" herbs will boost the immune system and cause major issues. The sad fact is that herbal medicine, as good and potent as it can be, is not the answer for this disease. Not as of yet, anyway. This is sad to me because this is my way of life, my "religion" (if you will), and has been since I was very young. So, Lupus really did a number on me, I suddenly had to see doctors, go to hospitals, take medication, etc.. That was something not only very foreign to me, but completely against everything I believed in. As an herbalist I have to stress to people NOT to play around with this. It is NOT a common cold or a simple case of depression, it's simply to complex of a disease, and there are very few Herbal Physicians and even fewer that know this disease well enough to treat it. As a matter of fact, I know, they are likely to send you away with the advice of going to a specialist. I just felt like I should put my 2 cents in on this subject. I hope I didn't offend anyone.
Thank you for your advice Saysusie, I'm presently working n finding a Rheumatologist in my area, as well as a GP/PCP.

Peace~ Blu

steve.b
12-11-2012, 08:38 PM
i would like to commend you on your approach to your desease.

i know a few herbalists, and they still believe they can heal me.
it is encouraging to me to hear that you, (as a herbal specialist),
realise the reasons behind herbs not working.

this site is dedicated to the memory of lauri.
say suzi's daughter.
she died from complications caused by her lupus, after trying alternative therapies, instead on traditional western medications.

no-one here is anti herbal.......
but this site is very strong on not stopping western medicines.

i am saying this to help you understand were we (this site) is comming from.

i must also say that you are very very welcome here.
i am personally happy to see you as a family member here.

thank you again for your honesty in openning up to us.

StarPhire
12-11-2012, 11:04 PM
i would like to commend you on your approach to your desease.

i know a few herbalists, and they still believe they can heal me.
it is encouraging to me to hear that you, (as a herbal specialist),
realise the reasons behind herbs not working.

this site is dedicated to the memory of lauri.
say suzi's daughter.
she died from complications caused by her lupus, after trying alternative therapies, instead on traditional western medications.

no-one here is anti herbal.......
but this site is very strong on not stopping western medicines.

i am saying this to help you understand were we (this site) is comming from.

i must also say that you are very very welcome here.
i am personally happy to see you as a family member here.

thank you again for your honesty in openning up to us.

Thank you. and understood. NP. That is such a tragedy. I just wish there was more of a joint effort on both sides. I have seen much more happening with it lately, but not enough in my opinion. Not just for Lupus or AI, but all around. But, there isn't and we have to deal with what we have in the best, most logical and safe way. And I'm so sorry what happened to your daughter Saysusie. It angers me that people that call themselves "Healers" or Wise Women can be so damn irresponsible with someone's life. We are supposed to help people, and admit when we cannot, and I believe in the case of Lupus in particular, we really can't. Human beings are not lab-rats in which we can attempt to relearn an old way. Sadly, I believe, we lost much of the knowledge we once had ; it became convoluted through history and changing times. We are not supposed to be snake-oil salesman, either. There is no Panacea for human illness. We must cope and trust in the ones with the experience.

~Blu