new to diagnosis

i recently found out I have lupus, mixed connective tissue disease through 2 bipsie at my dematologists andi am i treatment for lyme disease with babesia ,bartonella and other co -infections.now another blood test shows i have RA,-IT IS ALL SO CONFUSING! i had a traumatic fall spine injury on ice and my life changed-numerous spinal herniations,cervical and thoracic ,bulging in lumbar spine was enough. -now my immune system is causing all the symptoms of lupus to flare i am in severe pain rashes,headaches,fatigue that feels as if i am drugged,my biopsies and blood work at 51 years old suddenly show i have LUPUS with connective tissue disease,i lost patches of hair. i can barely walk with out double paddings in shoes,i cry all the time i cannot get anything accomplished in a day as my fingers are white ,cold numb, on and off ,my spine is being squeezed by discs pressing on nerves..and before i understood that others feel this way too.i wanted to die.of course it is not an option my son calls me superwoman and i have to get well. At least I MUST learn to function again to be an inspiration and hope for my 20 year old daughter who has had this since she was born.She cries mommy "i dont want to do this anymore" and my heart cracks,how can i fix this? We have been to Yale,Columbia Presbyterian,,Hackensack Medical Westchester,,ER hospitals,Gastroenterologists ,Endocrinology,( who advised to go to a chinese medicine doctor but did not know of one. She then told my daughter how beautiful she looked) we began in hematology,oncology,rheumatology,Chiropractors,acupuncturist,orthopedist,immunologist,lyme literate Drs. and now a neurolgist.My health insurance paid for very little because we were convinced Lyme was the culprit and lyme specialists do not take insurance. Now i think it is all of the above.I am writing in desperation, many people,friends,and co workers in my life do not want to see sickness or pain and i am isolated. i have a few close friends and a wonderful husband and family i am blessed. No one understands though -so i am crying alone every night ...not just for me, but even more so for my baby girl who as a young woman now needs to learn how to cope,who to go to? which doctors to trust?....she will be living in canada in a few months-i do not even know about the health care there. Is there anyone,anyone at ali who had this triggered by a trauma physical injury? what causes this to occur andto have gotten so debilitating -how do we get better.i am so scared and so confused and i don't recognize my own self anymore. i am so tired all the time my mind has so many plans and my body won't cooperate.THANK YOU. thank you for letting me vent and thank you for tolerating my lack of typing skills.Nothing comes easy anymore ,a year ago i worked 3 jobs 2 in urgent care and cardiology,and my own online stores with my hand painted furniture and handmade jewelry ,my hand do not work the same, i was so happy so easily with simple things ,but i cant find simple anymore...all responses greatly appreciated ,feeling lost, lysaj

1 Reply

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  • Hi lysaj,

    Have you been started on any treatment for your lupus? Some treatments for lupus can take a few weeks/months before you start to notice the benefit, so hopefully you will find some of your symptoms improve over time.

    With regards to your daughter, if you need more information about accessing healthcare in Canada and perhaps some recommendations on a lupus specialist to try and get referred to, you could contact Lupus Canada. lupuscanada.org/

    If you need more information about lupus you can download one of our free packs at lupusuk.org.uk/contact-us/

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