I finally found the place to join these discussions.
I have multiple medical conditions along with my lupus, autoimmune hepatitis, Sjgrogen's . . .
Does anyone have serious osteoporosis? In 2010 I had hip replacemnet surgery when all hell broke loose, resulting in 3 additional surgeries to correct fractures and infections of my right femur. Now I have a seroma (serous cyst) growing on my right hip at top of the incision
I'm also struggling with brochiectasis, lung scarring--the adult version of juvinile cystic fibrosis. I get so many infetions. Had to give up my dream house in a near-by mountain community to be closer to medical care and be away from the dust. Anyone going through lung problems?
I'd like to know how people are dealing with themselves and their medical providers when frequent medical situations arise.
Welcome to our group! Many of us are dealing with multiple medical problems so we are of a kindred spirit. Yep got osteoporosis too - after 30 years of steroids and being post menopausal it is hard to avoid
Wonderful discussion, you are definitely going through more than your share. I have a great niece with cystic fibrosis, and then I get the diagnosis of lupus. I had wondered if there were some kind of connection. My siblings and I all have asthma, but mine has been under control since I moved out of the country, and I don't have house cats any longer.
Welcome!, It seems that Lupus comes with other autoimmune problems..I don't know of anyone who just has Lupus alone..I have RA and Osteo, and have had atotal hip replacement as well as both of my feet rebuilt so that I may walk. Surgery seems to always come with side effects to deal with. This site is a great resource as you will find knowledgable people with caring hearts. I'm sorry your life has changed and you have had to move and totally change your lifestyle. But, most importantly, be thankful that you have medical coverage, and do whatever it takes to keep it. My situation due to my Lupus, etc.. has caused me to lose all that I have worked so hard to attain...I am alone, no health insurance, don't qualify for medicaid., medicare because I make just over the $900./per month in my SSI check. When I went for medical attention at our local hospital, I was denied being seen because I have no health insurance. No one seems to have any suggestions on receiving medical attention. Without health insurance, I can no longer be on the medications needed to help control the disease and all it comes with. I have researched the RX programs that have programs to assist in low cost pharmeceuticals... Only 2 of my meds are in any assist programs. My doctor just shakes his head and tells me to keep my chin up.
I am open to any suggestions, and can tell you that this Site is a great place to come where others"get it', and some have been thru similar curcumstances.
amy, can you not get disability. the day my doctor found out about i had lupus he told me to file for disability because of all the treatment and specialists that are gonna be needed.
First of all it may help you if you was to join the sjogrens syndrome site which as been done seperate now to help with your sjogrens http://www.sjogrenssyndromesupport.org/
Like yourself i have A1 Diseases overlapping Autoimmune Diseases besides the nice bonus of muscle atrophy, seizures, paralsis, Hughs syndrome, bronicle bronchitis and also beingborn with osetoarthris...today i had my feet and hands x-rayed, i've got a disfigured spine and back and to top it hip trouble besides....your not alone on this one.
Well i have a great GP who sees me as soon as i take ill, excellent Dermo and my first rheumo was crap and today i saw another and my god he did take time out to see me and that's what issues are all about, if you feel like your not getting proper care as you need it ask for another opinion.
I have been on disability for 1 year now, after a long time getting it. Unfortunately that has nothing to do with medical help in any way. I am 50 and live in North Carolina by myself, I have no family and no partner :( . I applied for Medicaid and was denied because my SSI disability check is slightly over $900./month which is the cut off for qualifying. I keep checking with people on this site for any ideas or information, but have found no help. I am really struggling to make it, including no money for food, let alone my medicine which is quite pricey without insurance. Luckily my Rheumatologist will still see me.. I told him my situation, and he just shook his head, did'nt know what to say and had no ideas of help for my situation. Within all of this is the fact that when the original medications ran out, I ended up not having any to take, which caused serious problems with withdrawls.. but what could I do? I don't know where to turn for help?? I try to think one day at a time.. the depression is a killer even without the stress of knowing whats ahead. I am scared., and welcome any advice or help from anyone.
You would at least qualify for federal disability. You're a step ahead with already having SSI. Most with disability qualify for SSI. You have to apply yourself the first time for fed disability (most people are turned down the first time). Then,you're supposed to get either an advocate or a lawyer. Also if you're having trouble paying for medicine, medicare can help. Please search the web. Just google "federal disability" or "medicare." All kinds of relevant information comes up.
The best thing about this site is education. You can turn your situation around, but you must be proactive with everything, dsiability, doctors, phamacists, the grocery store . . . Please, know that my friends and my shrink remind me of this too.
Bless you!
Amy H said:
Welcome!, It seems that Lupus comes with other autoimmune problems..I don't know of anyone who just has Lupus alone..I have RA and Osteo, and have had atotal hip replacement as well as both of my feet rebuilt so that I may walk. Surgery seems to always come with side effects to deal with. This site is a great resource as you will find knowledgable people with caring hearts. I'm sorry your life has changed and you have had to move and totally change your lifestyle. But, most importantly, be thankful that you have medical coverage, and do whatever it takes to keep it. My situation due to my Lupus, etc.. has caused me to lose all that I have worked so hard to attain...I am alone, no health insurance, don't qualify for medicaid., medicare because I make just over the $900./per month in my SSI check. When I went for medical attention at our local hospital, I was denied being seen because I have no health insurance. No one seems to have any suggestions on receiving medical attention. Without health insurance, I can no longer be on the medications needed to help control the disease and all it comes with. I have researched the RX programs that have programs to assist in low cost pharmeceuticals... Only 2 of my meds are in any assist programs. My doctor just shakes his head and tells me to keep my chin up.
I am open to any suggestions, and can tell you that this Site is a great place to come where others"get it', and some have been thru similar curcumstances.
I was recently dignz with copd, I have never smoke nor had any lungs infection, just lupus doing its thing. i use oxygen at night and breathing treatment twice a day. Its a struggle and i'm still adjusting to it. No choice but to accept it. i'm still able work but sometime i think about checking out, aisa64
Bless your hearts! I, too, have multiple medical issues and have over 20 different doctors. It gets really frustrating having to go from one to the other and have to explain my history over and over again. I've had mental issues since I was a teenager and then was diagnosed with Epstein Barr at 25. My first knee surgery was at 19 and I've had osteoarthritis since childhood. Ten knee surgeries on the left knee, with a total replacement in 2006, and 3 surgeries on the right knee. I tore the ACL just walking in the mall...in my right knee....and now the kneecap is totally worn out and I'm waiting for a replacement. I have Osteoporosis and have to be careful since I'm prone to falling down all of the time and have cracked several ribs and have stress fractures in my feet. My gallbladder was removed March of 2007 and I had to have a complete hysterectomy May of 2007. My lungs are extremely sensitive and I've developed bronchitis repeatedly. My blood pressure and heart rate have gone way up and have to be controlled with medication. I have sleep apnea and have to use a CPAP machine. My mental issues have gone haywire and I'm on the maximum dose of prozac and xanax, along with topamax, and still have severe depression. All of this is related to SLE and I had to take a full disability retirement December of 2007. I was 45 years old and lucky that I was able to receive SS benefits. I was the main breadwinner in our house and my husband and I took a huge paycut when I got sick. We are drowning in medical bills and we both spend a fortune on medicines each month. Sorry to go on and on, but I don't know what else to do. My late MIL had Lupus, too, and she died from Leukemia in 2006...after being on prednisone for over 30 years. My Great Aunt had Lupus and RA runs on both sides of my family....I have the positive RA factor, too. I still owe thousands of dollars to my rheumo for the Benlysta infusions that killed me, but he isn't pushing me for any money. He knows how hard things are for me right now. I do the best that I can each day and pray for a cure.
Oh, I'm now a Type 2 insulin dependent diabetic, too. I could go on, but I've already taken over your discussion. Prayers for comfort and healing to you! Lori
Thank you for your suggestions! This should be very helpful for Amy.
Trisha
USAGURL said:
Amy,
You would at least qualify for federal disability. You're a step ahead with already having SSI. Most with disability qualify for SSI. You have to apply yourself the first time for fed disability (most people are turned down the first time). Then,you're supposed to get either an advocate or a lawyer. Also if you're having trouble paying for medicine, medicare can help. Please search the web. Just google "federal disability" or "medicare." All kinds of relevant information comes up.
The best thing about this site is education. You can turn your situation around, but you must be proactive with everything, dsiability, doctors, phamacists, the grocery store . . . Please, know that my friends and my shrink remind me of this too.
Bless you!
Amy H said:
Welcome!, It seems that Lupus comes with other autoimmune problems..I don't know of anyone who just has Lupus alone..I have RA and Osteo, and have had atotal hip replacement as well as both of my feet rebuilt so that I may walk. Surgery seems to always come with side effects to deal with. This site is a great resource as you will find knowledgable people with caring hearts. I'm sorry your life has changed and you have had to move and totally change your lifestyle. But, most importantly, be thankful that you have medical coverage, and do whatever it takes to keep it. My situation due to my Lupus, etc.. has caused me to lose all that I have worked so hard to attain...I am alone, no health insurance, don't qualify for medicaid., medicare because I make just over the $900./per month in my SSI check. When I went for medical attention at our local hospital, I was denied being seen because I have no health insurance. No one seems to have any suggestions on receiving medical attention. Without health insurance, I can no longer be on the medications needed to help control the disease and all it comes with. I have researched the RX programs that have programs to assist in low cost pharmeceuticals... Only 2 of my meds are in any assist programs. My doctor just shakes his head and tells me to keep my chin up.
I am open to any suggestions, and can tell you that this Site is a great place to come where others"get it', and some have been thru similar curcumstances.
Bless you and all that you've gone thru already. You are a strong woman and all you can do is take this one day at a time.
Hugs, Trisha
loriken214 said:
Bless your hearts! I, too, have multiple medical issues and have over 20 different doctors. It gets really frustrating having to go from one to the other and have to explain my history over and over again. I've had mental issues since I was a teenager and then was diagnosed with Epstein Barr at 25. My first knee surgery was at 19 and I've had osteoarthritis since childhood. Ten knee surgeries on the left knee, with a total replacement in 2006, and 3 surgeries on the right knee. I tore the ACL just walking in the mall...in my right knee....and now the kneecap is totally worn out and I'm waiting for a replacement. I have Osteoporosis and have to be careful since I'm prone to falling down all of the time and have cracked several ribs and have stress fractures in my feet. My gallbladder was removed March of 2007 and I had to have a complete hysterectomy May of 2007. My lungs are extremely sensitive and I've developed bronchitis repeatedly. My blood pressure and heart rate have gone way up and have to be controlled with medication. I have sleep apnea and have to use a CPAP machine. My mental issues have gone haywire and I'm on the maximum dose of prozac and xanax, along with topamax, and still have severe depression. All of this is related to SLE and I had to take a full disability retirement December of 2007. I was 45 years old and lucky that I was able to receive SS benefits. I was the main breadwinner in our house and my husband and I took a huge paycut when I got sick. We are drowning in medical bills and we both spend a fortune on medicines each month. Sorry to go on and on, but I don't know what else to do. My late MIL had Lupus, too, and she died from Leukemia in 2006...after being on prednisone for over 30 years. My Great Aunt had Lupus and RA runs on both sides of my family....I have the positive RA factor, too. I still owe thousands of dollars to my rheumo for the Benlysta infusions that killed me, but he isn't pushing me for any money. He knows how hard things are for me right now. I do the best that I can each day and pray for a cure.
thank you for your ideas. i went online to apply for inclusive health federal option health care in NC, and i can't afford the monthly premium $250/month. have to wait until Monday to talk to customer help and see if there are any options. again, i am open to any ideas.. and thank you so much for caring, amy
I do admire you though with all these issues you have and what we've chatted about but your the same as myself and such a large majority of other members...we're all in the same boat so we mays well keep on swimming.
Love Terri xxx
loriken214 said:
Oh, I'm now a Type 2 insulin dependent diabetic, too. I could go on, but I've already taken over your discussion. Prayers for comfort and healing to you! Lori
Amy, keep trying! There HAS to be a way to get some assistance! Thank you USAGURL!
Lori
sunrisetrisha said:
USAGURL,
Thank you for your suggestions! This should be very helpful for Amy.
Trisha
USAGURL said:
Amy,
You would at least qualify for federal disability. You're a step ahead with already having SSI. Most with disability qualify for SSI. You have to apply yourself the first time for fed disability (most people are turned down the first time). Then,you're supposed to get either an advocate or a lawyer. Also if you're having trouble paying for medicine, medicare can help. Please search the web. Just google "federal disability" or "medicare." All kinds of relevant information comes up.
The best thing about this site is education. You can turn your situation around, but you must be proactive with everything, dsiability, doctors, phamacists, the grocery store . . . Please, know that my friends and my shrink remind me of this too.
Bless you!
Amy H said:
Welcome!, It seems that Lupus comes with other autoimmune problems..I don't know of anyone who just has Lupus alone..I have RA and Osteo, and have had atotal hip replacement as well as both of my feet rebuilt so that I may walk. Surgery seems to always come with side effects to deal with. This site is a great resource as you will find knowledgable people with caring hearts. I'm sorry your life has changed and you have had to move and totally change your lifestyle. But, most importantly, be thankful that you have medical coverage, and do whatever it takes to keep it. My situation due to my Lupus, etc.. has caused me to lose all that I have worked so hard to attain...I am alone, no health insurance, don't qualify for medicaid., medicare because I make just over the $900./per month in my SSI check. When I went for medical attention at our local hospital, I was denied being seen because I have no health insurance. No one seems to have any suggestions on receiving medical attention. Without health insurance, I can no longer be on the medications needed to help control the disease and all it comes with. I have researched the RX programs that have programs to assist in low cost pharmeceuticals... Only 2 of my meds are in any assist programs. My doctor just shakes his head and tells me to keep my chin up.
I am open to any suggestions, and can tell you that this Site is a great place to come where others"get it', and some have been thru similar curcumstances.
We are all in this together...I'm usually a very positive person, but I tell it like it is and people are amazed at what SLE is and does to the body. My moon face and butterfly rash are constant and it took my friends and family a long time to adjust to the "new" me. I'm still in the fight, though.
Lori
Tez_20 said:
Hello Lori,
I do admire you though with all these issues you have and what we've chatted about but your the same as myself and such a large majority of other members...we're all in the same boat so we mays well keep on swimming.
Love Terri xxx
loriken214 said:
Oh, I'm now a Type 2 insulin dependent diabetic, too. I could go on, but I've already taken over your discussion. Prayers for comfort and healing to you! Lori