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no understanding

Discussion in 'Relationships & Lupus' started by jlb, Jun 16, 2016.

  1. jlb

    jlb Member

    ive been sick for months. i fight it everyday. every day it takes every part of me thinking about my kids and where we would be if i didnt still earn a paycheck. i shower at night just so i can crawl out of bed brush my teeth change and leave. i stopped wearing make upor worrying about my hair. hell some times i think the customers look at me like how can u get anything right if you dont even care for yourself. my husband tries but he doesnt comprehend. almost all of my energy is spent by the time i leave work. I forgot to make payments on household bills because all i can focus on is trying to stay awake. Im missing my kids baseball/basketball/soccer games, my son didnt even get a real birthday celebration because frankly im too tired. we are low income although we both are employed fulltime so most specialists in the area dont accept my medi-cal. my mom says im over reacting, my dad says i'll get better, my husband says i should be happy because im always one day closer to an official diagnosis. im so lost anymore and no one understands this doesnt go away. i have symptoms and l meet most of the criteria but doctor says elevated crp doesnt matter in lupus, low red blood cell count in a woman my age is normal (even tho my iron studies are normal), my ana is negative but dsdna is positive. i have begged for every test they have done and every test even when its elevated/low/positive/negative in favor of lupus they still deny me a diagnosis. my employer doesnt understand why i keep going to the doctor legally they cant deny me but are obviously frustrated. i hear rumors that my job effeciency has went down and higher ups have noticed. i do everything i can while im there i dont pass off job duties/tasks i always complete everything im supposed to but the rumors still wander. ive always been extremely independent and now i have almost no control and feel like i dont have a voice. i keep feeling like if i was officially diagnosed things would be better (id have treatment, and verification why i feel this way). i cant make the people in my life understand. my friends dont talk to me becuz i dont usually text back (im at work or sleeping). ive contemplated counseling but id rather be home alseep. how sad is that?
  2. debatat

    debatat Moderator

    Have you tried a second opinion? An elevated crp would indicate inflammation, so maybe a second opinion would help. It is frustrating whilst you are on the path to answers, it can take a long time for some. Do you keep a diary of symptoms, noting pain, rashes, any swelling of joints etc? Taking photos of any rashes etc? This can really help.

    Have you shown your family the spoon theory?
  3. jlb

    jlb Member

    I did try to get a second opinion. the first person i saw was a pa-c who said my labs were unequivocal who sent me to a dr that said he thought i was fine but when asked why i would have fevers he ran the crp which was elevated and he dismissed it. my sons pediatrician told me she believed i had the malar rash and to go back that dr said my ana was negative so its not. i went to another facility i was told my ana is negative and so its impossible for me to has lupus. i went back to the other provider and told him 97-98 % is positive and i wanted more testing he told me i was tired because i have kids and brushed me off. i finally begged enough for a referral that i was referred to rheumatology and they wouldnt accept my referral without more antibody testing thats how i finally was able to get the dsdna but they wont count the rash, or the nose ulcers, or my anemia, they will only count my exhaustion and tell me i dont meet the criteria.
  4. jlb

    jlb Member

    2 of the providers i saw mentioned my insurance and that the testing i was requesting was expensive and the reimbursement rate wasnt good. makes me feel like if i had money i could get the tests.
  5. lazylegs

    lazylegs Moderator

    Unfortunately even with money and good insurance people get the run around. I remember how mad I was when told I was tired because I had a little one to care for and my ANA was positive. No internet back then and I hadn't learned to be self-assertive so I was left hanging. I quit going to the doctor until a new symptom popped up. It is frustrating but you know when your body is not right so don't give up.

    Take care,
    wolf1 likes this.
  6. Mag311

    Mag311 Registered

    Oh man! I am so very sorry. I don't 100% know how you feel, but I have been in somewhat of your place trying to get a diagnois. It is exhausting knowing something is not right, and others tell you, you are fine. Don't give up! Only you know how it feels to be you.

    Even when the stars align perfectly a diagnois for lupus takes years. Many times it takes a while for it to really show itself with 100% certainty. It is a great imitator. So it is hard for any doctor to truly understand what they are looking at until they have observed it for a bit.

    Sounds like you need a new doc. From my understanding a positive dNsDNA was pretty connected with a lupus diagnois. For years my DNA antibody was not positive but I had a positive ANa and low compliments. Check those if you can get a GP to. C3 and C4. So, when the DNA antibody came back high then they gave me the diagnosis of lupus with my ANA and compliment levels. However, I was lucky to have a doc that treated me with plaquenil for 3 years before getting the official diagnois.

    Try getting in at the clinic where there is a med school. They should take any assistance or insurance you have. Most will work with you and even sometimes provide free care so med students can learn. All of their work is double checked by an attending who has years of experience. Usually young medical students want someone like you to come in, so they can figure the problem out.

    Good luck! I hope you get the care you deserve.

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