i fought the invisible disease of lyme about twenty years ago. it was another one people thought you were faking about. it shut my bladder and bowels down and i wound up In the hospital for almost two weeks when i insisted inn getting out because i was a single mom of two small Children just two weeks before Christmas with no gifts under the tree. my girls are grown and don’t come around much due too moving away and living their own life. i live alone and sometimes feel that i just don’t want to fight yet another battle. may i mention i have had malignant melanoma endometriosis gerd interstitial cystitis high blood pressure coronary artery spasms extreme fatigue and pain every day.i am also waiting for a scheduled day for the first surgery of two on torn tendons in both elbows i have pain when picking things up. i try to be positive and am on paxil.i babe had therapy in the past for other things and just don’t care to go right now. i am not suicidal just tired…
Janet, you’ve had a lot to bear. I know it can seem overwhelming, but try not to give up on yourself. I can see you are strong. I have found giving up only makes it that much harder on us when we finally rally to do better for ourselves. Keep coming here for support. Everyone is kind and encouraging. Best wishes.
Hugs,
Laurie
I hope you get the Lupus Now magazine. This month it happens to be about pain and lupus but more for you about tendons. Might not give you great answers but help in knowing you are not alone. It might help also on answers or treatment, i should not make it sound like it does not because the article does speak of solutions
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20 years ago lyme was just becoming well known so sure it was kind try, wait and see, test, try and see.
Lupus now is well known and many people know about it, most actually. Even 20 years ago i was surprised at change in many of doctors as well as public knowing about it.
When i first was diagnosed in late 70's, no one really knew about much except rheumies. Public did not at all, i remember constantly what is that and only ones who did know was because they knew someone whom had died from it.
Yes, some doctors still question diagnosis but i would try to find a doctor whom can check your original diagnosis and go over their tests etc..it is possible that one could have something like lupus but not....i always ask how would you treat it differently. Most times they say they would not so what does it matter? why put you through some nasty tests if it will not help?!!
But i hope you do try and fight it. I totally understand where you come from...lupus now a days is looked at chronic diseases not terminal. So mainly it is managing it and finding what drugs can help you do that as well as lifestyle, diet 'etc. .
More and more Rheum are including Therapists as part of their team. This way they can treat only medical portion of the disease while therapist treats the mind side...which is huge part of any illness not just lupus. More doctors period who treat chronic or even terminal disease are finding this benefits their patients as well as helps them get to point of physical side.
Every decent rheum should be asking about how is your personal life when they see you. If not, you got a doctor not doing his job or does not care. So find one that handles both or therapists.good luck
thanks siskiyousis and baltimorebaby for the replies.most nights i am to tired to get on here. I can tell the plaquinil is working.i still hurt a lot every day and perhaps i will not throw the towel in just yet.I have my second appointment on the 25 of this month so i will see what she says. the pain this disease causes can not be understood by those who have not experienced it.Most people i have met that have it or know someone who has or had( past away) have nothing good to say about it. I know people now that have friends or relatives that stay in pain or in bed. i am going to try to keep a positive attitude but some days are hard. i do electrical work and busy days make it so much worse. I pray God heals me of this awful disease