Listen to your body

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Latin Wolf
New Member

Date Joined May 2013
Total Posts : 2
   Posted 5/28/2013 7:22 PM (GMT -6)   

I was diagnosed with Lupus when I was 44, now I am 59. At first I was so relieved that a Doctor actually gave me a name for what I had, little did I know that after 15 years the pill police raided his office and he dropped me like a hot potato. I was on so many drugs by that time I didn't know if I was coming or going, and no one cared.

For 2 months I was literally cut off from all the medicine that really seemed to help. Well, after self detoxing, and being referred to two new Doctors, one found out on top of all of this I had Rocky Mountain Spotted Tic Fever. It was a blessing someone finally took the time to actually listen and care, plus, I myself decided since it was people who did not know me had control over what I could be prescribed and what not, I'm thankful I have a Doctor who stands up for me, even when she has to stand up and fight it out with the pharmacies. I don't want to live but that's not up to me, pain is bad enough but when you have people who actually get paid to take your medicine away, it's pretty depressing.

I was forced to quit all medicine for Lupus, and now I am trying to get by as little as possible, when the Pharmacies say “Take your medicine as prescribed” it's a lie. I've found out that insurance companies charge you more if you have insurance than if you don't, and most Insurance Companies and Pharmacists enjoy making people suffer. I'd rather die at home than have an insurance company tell me I have to have an operation. I don't understand, when I had insurance a prescription I was on cost $65.00 and it said if I didn't have insurance it would cost $231.00, and now that I'm not on insurance it cost's me $27.00. What has happened to our country?

I am now listening to my body instead of the poor Doctors trying to keep up with insurance rules and regulations and found that ½ #10-500 loritab, and 1/2#1 Xanax about 6 times a day, keeps my arms from feeling like they have been burnt from the inside out, its very painful and the most painful is when the pharmacies mess up, and then say it's your fault, then after about a week without medicine you FINALLY get your medicine, and by that time, your arms feel like they have fallen off but are still there and it was the pharmacies fault but no apology, they'd rather you die than apologize. I actually feel sorry for the Doctors who must deal with them day in and day out, with someone who thinks they know more about the Doctors and their patients, plus, no apologies, no one gets admonished, just “too bad for you!.” Your prescription was a week late and you must of suffered considerably, but we just can't seem to get our computers and phone systems in sync, again, no fault of ours and you must have had an awful painful holiday without your medicine, he, he. Then as soon as you change your pharmacy, they merge.

Now that I've written my book on anger management which is basically “too bad for us!” I wanted to tell the person who suffers from the burning sensation, that because of depression a Doctor prescribed to me Prozac, and since I only take two medicines, now, after one month of taking Prozac, the burning sensation started coming back into my arms so I stopped taking it, which the pharmacist said I should not do that, so when I die he can say “it's because of the Prozac, I told her to keep taking it.” All kidding aside, listen to your body, even though I'd rather not be here.

I would like to ask if anyone uses body braces, or if there is such a thing as body and neck braces, I'd like to get off all medicines and with Lupus, at . my age it sounds like I should not have it, but whatever it may be, it burns and is terribly painful, especially the neck pain and I can keep that under control as long as I can keep taking my medicine on time, but when I'm at the mercy of the Pharmacy, it seems they make my life more miserable than it already is, and then accuse me of taking more than I should, that right there tells me they have never known pain, because a person in pain does not sell his medicine for money, and just because a person does not look like they are not in pain, we just try to hold our head high and keep on going and pray the Good Lord takes us soon, and hope these people will wake up before they will end up in eternal pain. Thank you.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 5/29/2013 1:49 AM (GMT -6)   
There are different types of braces. There is a neck brace used mainly for people with whiplash. If you want a combined body and neck brace you need to get it special ordered from an orthropedist (sp?).
However, if you wear a brace too long the muscles will atrophy and weaken.

My rhuemy has all but thrown his hands in the air with me. I'm allergic to a lot of medications and then my kidney doctor says no NSAIDS. He doesn't like to keep someone on steroids all the time either. So I get by with plaquenil, gabapentin, tramadol, and tylenol. (I sometimes sneak a ibuprophen, but don't tell my kidney doctor.)
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Latin Wolf
New Member

Date Joined May 2013
Total Posts : 2
   Posted 5/29/2013 11:04 AM (GMT -6)   
Thanks Couchtater & Joy. When I was young I could sleep 24 hours, my mother just let me because she thought I needed the rest, and yes, when I woke up, I could of easily fallen back to sleep again for another 12 hours, reading your replies help. I must of had it all my life and not finding out until I was 44. I never could fall asleep, but once asleep as a child I could sleep through a tornado, after having children I woke up to the sound of a pin drop, plus no matter how much or how little, it seems it's never enough. There's so little known about Lupus, when I was 4 I had my appendix taken out and the minute they got them out they burst, I've had a lot go on in my life and maybe all of this will help someone in someway. And maybe I can just wear the braces when the pharmacy police decide it's time to teach me a lesson, I guess it's a power play, people with no pain do not, will not, refuse to believe it's a living hell and we NEED THE MEDICINE to keep going, otherwise, even with sleep sometimes we can't find the strength to throw a lemon:)
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