new member in need of advice

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New Member

Date Joined Jun 2009
Total Posts : 1
   Posted 6/18/2009 12:26 AM (GMT -6)   
 hello everybody,
                my name is jess and my mother suffers from lupus. i am so worried because my strong, powerful, mother who never cried, seems to be stripped down to the point in which she doesnt think anything will get better. i try my best to cheer her up however no matter what happens it just seems to stress her out more. for example i just graduated from highschool and after the ceremony i caught my mom crying telling my aunt jenny that she wished that she could see me better as i walked across the stage. shakehead   i just feel so frustrated. no one seems to help. not even our supposedly great goverment of america.the money is so tight latetly and medicare just makes everything such a tedious process with their incessant referals and denials. theyre even thinking of cutting back even more! is there any way to get any real help? i hate to ask but im at a loss for an alternative at the moment. also is there anything i can do to make my mom feel better? or to be hopefull again?

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 6/18/2009 1:31 AM (GMT -6)   

Hi Jess, bless your heart. You shouldn't have to deal with this but I can tell how much you love you mom. Is your mom on any meds now? It's hard to try to tell you where you should go for help because there are so many different situations in peoples lives.

First off I will tell you  that there is absolutely possitivly without a doubt ton's of hope and you can tell your mom I said that. You can also suggest she join the group. This is a great support group. Lupus is not the killer disease that it used to be. There are many good drugs out there that help with pain swelling inflamation, depression,(it goes with the disease).

Yes I can relate to the changes in medical assistance. If you check at the top of this forum you will find many places you can check out and make phone calls and your mom will probably be able to qualify for. I live in oklahoma and they have a program called sooner care for low income people. Yes you do have to get referals but once you get the hang of it it's not so bad.

Has your mom been diagnosed for sure or are they working on it? even if it's up in the air most drs. will give you meds for the symptoms. It's amazing how a small amount of steroids and plaquenil can change a life.

Hang in there and take time for yourself. I doubt your mom want you hanging out with her all the time. You are young you need to have a good time. Don't feel quilty. Sometimes we just want to lay around and sleep or watch t.v. and really don't need the company anyway. Somtimes we get sad,angry, tearful, it's hard to except that this disease takes away a lot of who we are. But like I said this group is here for you and her. I hope you both take advantage of it.

keep us informed and don't forget to check the links at the top of this group.

Here jess I decided to pull these down for you. hope something helps. Call them aand ask questions tell them you really need help.

And . . . another provided by Okie

God Bless

 scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Detrol LA,spironal,Lisinaprol,furosemide,azithromiazin,plaquanil,pottassium,Citrocal,vicodin,percocet,tons of inhalers.
Bear ye one another's burdens
Galatians 6:2 KJV


Post Edited (okie) : 6/18/2009 12:36:19 AM (GMT-6)

Veteran Member

Date Joined Apr 2006
Total Posts : 1342
   Posted 6/18/2009 4:13 PM (GMT -6)   
In have battled 3 serious diseases for 4 years and been on medicare the past 2.  There has been NO problem whatsoever to get the treatment I needed and you can go to whatever doctor you wish.  There are some treatments that need to be justified to medicare but that is also true of ALL private insurance.
What is going to happen in the future if our healthcare system is changed is a matter of conjecture. But at this time anyone on medicare should not have any more problem getting needed care than someone on private insurance.
In addition, I have paid almost nothing to doctors and hospitals and labs since going on medicare.  Of course I have a drug plan and a medigap plan which I pay but overall it is MUCH cheaper than the private insurance I had and I am getting the same care.
If you are talking about medicaid that is a different subject and varies from state to state.  There is NO funding of medicaid and never has been.  Medicare is funded with payroll taxes but there is no such tax to fund medicaid.
There are many state assistance programs as well as drug assistance programs and I see that others have listed some sites. 
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 50mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
Remain optimistic and you can overcome the odds.

New Member

Date Joined Jun 2009
Total Posts : 1
   Posted 6/19/2009 1:05 AM (GMT -6)   
first off i would really like to thank both of you for your support, your advice, but most of all your wonderfull kindness, i truly appricate it.

as far as my mothers diagnosis, she was diagnosed when she was pregnant with me but it was managed without medication (under doctors order) until about 2003 when she almost completely lost her eyesight. now i have researched lupus extensively and although i do not have first hand knowledge i understand the individuallity of this complex disease. the main thing i am confused about is how often my mother is in pain. i read about flare ups but my mom never has a moment in which she is not in a so called flare up which is awful.

her medications are too much for me to remember however i do know her pain meds she takes vicodin, perkacept, fentynl patches and toridol.she does not take any steroids other than her eye drops because she took steroids too long or too much because she developed a disease called avn or avascular neucrosis. which has resulted in a joint replacement on her middle finger, a right hip core decompression and almost immediately after a total hip replacement on the same side. i have looked up alternative medicine for her to take but it is extremely hard to get on a budget.

her insurance is medical and medicaid we deal with something called molina insurance and it has been nothing but a nightmare. they even sent us a letter stating all the things that they werent going to cover anymore, including dental and my mom just got a tooth pulled and is EXTREMELY self concious and embarassed by it to the point in which she might pay for the tooth herself thats 700- 1300 dollars that we do not have.

also they are cutting her ssi and the social security she gets for me because i turn eighteen soon. they wont even cover the moth that i turn eighteen.

last but not least although i plan to take advantage of the support of this site my mother is way too proud to reach out to anyone. i think it makes her feel weak. she doesnt even want to admit that there is a possibility that she can be depressed. do you think there is any way to make her feel any different? i really think talking to someone will help but she is so stubborn sometimes.
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