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Still waiting on a couple results

Friday, August 24, 2018

Still waiting on 2 tests to come back, but so far all the big nasties they have tested me for have come back negative. I am happy about that on one hand, but they still have the 2 tests to come back... and I am still sick... sooo, I was referred to a GI specialist ( referred by my rheumatologist, by the way... who thinks the referral should have been made a while ago!). In fact my rheumatologist is not impressed either with the care that I am receiving from my primary care doctor or that I got when I went to the ER at the local hospital on the 9th... she says that I have been too sick for too long... that something more should have been done long before this... I don’t know... I am just so exhausted of being sick... And the drama with my friend continues... I need to rethink how much I interact with this person, because they just make me feel badly about myself in the end. I don’t need that on a daily basis. Harrumph. On an interesting side note, I have been having an interesting conversation about language and the use of language in self identity. There is a difference between saying “I am schizophrenic” and saying “I have schizophrenia”. It is a small word choice difference, but the emotional impact on self identity can be huge... I can be sick, without taking on my illness as an integral part of my identity. For many of us with mental health diagnoses, other chronic illnesses or long term disabilities, our identity becomes so wrapped up in the disability or health condition that we forget all the other fun, interesting, challenging, diverse, aspects of ourselves! And that is limiting and sad... for anyone. And really the effects are felt by anyone who loves or cares about someone with one of these things as well... I equate severe physical, mental, emotional illness or pain to ripples in a pond or lake... they don’t stop just at the person ... the point of impact as it were... the effects are felt in spreading waves in circles around the person , to their friends, family, health care providers, and the families of those people as well. Because we do not live in isolation (much as I would like to at times), we are by nature social creatures and our experiences affect how we interact with our families, even when we try to compartmentalize. Eh, I am on my soapbox again... I will get off that box now... have a good day!
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Member Comments About This Blog Post
    Prune the weakly branch from you support group (I know, easier said than done).Sorry you weren’t getting the care you needed. Can you change your PCP? (with or without support of the rheumatologist?) Some years ago, when I started getting horrible cramping belly pain, nausea, vomiting, etc, ALL of my tests came back negative. One advantage of being a military vet is I got blood work, IV fluids, meds, plain films and a couple of cat scans at no cost to me. So, I didn’t have any cancer, pancreatitis, gall bladder disease, obstruction, etc. I now have a stock of meds for the camping, some for the nausea, etc. Since I’ve retired, I have about 90% fewer attacks. Hmmm, think they are related?
    178 days ago
    178 days ago
    I actually feel the way, everyone does, here! I think it is IMPORTANT to be selfish.... who will be 'there' for us, if we aren't???? You ARE a very special woman, please remember!
    178 days ago
    My dear beautiful Chandra. You like I...being the 'sensitives' that we are...always have a hard time seperating ourselves from people that might not always have our best interests at heart. Remember the big group of so called 'friends' that we have hung with for some 25+ years. I think that we sometimes do things as habit rather than break out of our comfort zone and reach for something else. Especially when we are not feeling well and that change becomes even more effort.

    I'd say to limit yourself with this person, she obviously is not making you feel better so why bother? I sometimes wish we all just lived in a 'spark' community so that we could have the interactions with this wonderful group of people in person rather than always on-line. But that is probably just wishful thinking...we'd probably find in RL that things would not be utopia there either. emoticon

    I think you should take some of your elequeont musings and write another book. The world really needs to hold some of your brilliant observations in a bound edition! I'd be the first in line to purchase! emoticon

    Love you...mean it! emoticon
    178 days ago
    First glad to hear the worst possibilities are ruled out. Our words and how we frame things do make a difference in how we see our situation. My daughter had to change Drs. earlier this year as she also wasn’t getting the support she needed. She now is getting better treatment and her overall quality of life is improving. I hope you can find a primary doctor who is a good fit for you.
    179 days ago
    I agree with what the others wrote, especially CHERIRIDDLE.
    179 days ago
    I am grateful you have found a stronger advocate for your health. I am wishing you relief, beloved.

    Yes, our words matter so much! I have been working hard for a long time now to say, "I am feeling some anxiety right now," or "These symptoms are really awful," or "I am having a hard time right now," instead of how I used to label myself as anxious or panicky.

    I am not made out of symptoms, feelings, suffering or labels. I am made of love.
    179 days ago
    I think you are a very special person.Many people have said very wise things here ,I am late to the party.No one should make you feel bad about yourself. I can't imagine my days without you.If this friend does not see what they are doing is hurtful perhaps it is time to lessen contact with them.Sadly sometimes we outgrow people.We grow they don't or they are threatened by our growth. Feel free to climb on your soapbox with us anytime ! We often learn from you!
    179 days ago
    First of all.............I am glad that the test results so far are negative and I am hoping that the last 2 are also.

    you write so eloquently and your explanation re: the fact that what we have does not have to become what we are should be on a pamphlet in all Dr.'s offices.

    .Get rid of the "friend." You do not need this. Nothing is worse for you than someone who doesn't have one ounce of compassion. This is the time when I would wish that he/she could experience exactly how you are feeling for at least one month. MAYBE that would help them to understand................MAYBE.>
    Fourth.............If at all possible, seek other medical advice. So far, they just are not doing what they should to find out what is causing your condition.

    I wish you the VERY BEST....................... emoticon
    179 days ago
    Being part of Spark Nation, we are all on your side. Bod bless. emoticon
    179 days ago
  • BJAEGER307
    I say other people should not judge you unless they have walked a mile in your shoes. No one can understand how you feel and should not judge you. You don't need friends like that.

    I hope they find out exactly what is going on with you and that you start to feel better soon. Take care of yourself the best you can.

    179 days ago
    I cannot applaud your wisdom enough. You make such an intelligent
    observation about how we choose to relate to a given health condition,
    has significant impact on our identity and our sense of personal.
    empowerment. When one chooses to internalize their disease,
    and take ownership of a health condition, they are reducing their ability
    to heal and increasing their sense of inadequacy.

    Even when we face illness, the core of who we are is unchanged.
    Sometimes that is hard to sort out in our language of disease.
    You have wisely done that.

    I hope you are able to find supportive medical care as you bravely
    continue on your journey to health and a sense of well-being.


    179 days ago
    Hugs. I feel for you. I know you are sick of being sick. I feel that way, too. Don't give up. Sounds like it's time to get a new primary doctor who will be able to help you. Maybe it is also time to lessen your contact with your friend. Making you feel bad about yourself hurts your physical & mental health. Your friend may think they are helping you by what they say/do. But if it is toxic for you, tell your friend to stop it. Maybe that will make them think before they say hurtful things to you. Hugs emoticon emoticon
    179 days ago
    179 days ago
    You can always get on the soap box. Regarding the so called friend - get rid of them, you do not need to feel bad about yourself....period emoticon
    179 days ago
    I hope these next test results have answers for you.
    179 days ago
    I AM SO GLAD that the biggest health concerns have been ruled out. Glad you have a rheumatologist who is on the ball.

    I remember the hell I went thru when I was told I had MS. HOWEVER, there are very pointed symptoms (criteria if you will) that have to be met to have this diagnosis. I knew I didn't meet them. Went for a 2nd opinion and was told NO you do not have MS (went to Mayo Clinic), and he said many people w/MS can have the symptoms you're having, but because you have symptoms that can oint elsewhere (and mine did) your "diagnosis" of MS is incorrect. Sigh of relief.

    I tell my DD this all the time . . . if your friend makes you feel badly about yourself, are they really a friend? Just something I told her to think about. You’re right to re-think interacting w/this person.

    You are so right about the way ideas are expressed. You are a person WITH (fill in the blank), NOT the (fill in the blank).

    Hey, feel free to step on that soapbox anytime! You have expressed feeling that are valid and important!

    HUGS and I DO hope you’re feeling better.

    179 days ago
  • EISSA7
    I am glad that your rheumatologist is supportive and is encouraging you to keep searching until you get answers! And yes, a simple word can make all of the difference...well said!
    179 days ago
  • MBPP50
    Very well said. I hope you get those test results back soon and they figure out how to treat you so you can get to feeling better. Still sending up prayers for you. emoticon emoticon
    179 days ago
    you are a vital part of this team! and we love you no matter what is happening in your life at the moment! emoticon emoticon
    179 days ago
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