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Thread: Epiphany - long

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    Lightbulb Epiphany - long

    I realized something yesterday when I was at the ENT - for another sinus infection of course *eyes rolling*. The doc and I were talking about whether or not my chronic sinusitis might be Sarcoidosis in the sinuses. I had asked the other doctor at that practice about it a few weeks ago and the other doctor and nurse practitioner both thought I might be onto something. This doc isnít so convinced b/c as he cheerfully said to me - I don't look like I have Sarc so he doesn't think it'd be in my sinuses since physically I have so few signs. Isnít that wonderful Ė another expert telling me I donít look sick. UGH! I explained to him that most of my signs and symptoms are not visible - such as the fatigue and joint aches and brain fog. I'm so tired of hearing about how I just don't look sick and it really got me thinking.

    Itís scary that the doctor I probably see the most often (the ENT) doesn't see the signs and symptoms of my being sick even when I am there once every 6-8 weeks with a sinus infection. We agree on chronic sinusitis but that doesnít seem to be connected to anything in his mind. You know me Ė I donít think the body works as individual systems just because we have individual specialists for these systems. I think they work together, often in ways we donít fully comprehend yet. If the doctor I see the most doesn't see how sick I am then how could I expect other doctors I visit to notice?

    Only my chiropractor - who I see 2x/month or more sees any physical symptoms. How could this be? I know she is much more open-minded about the concept of whole-body wellness than most of my other doctors and she is personally very aware and self educated on a host of AI issues. She really takes the time to help her patients with their individual ailments that you wouldnít normally associate with chiropractics. I know that seeing her regularly has dramatically reduced my occurrences of re-infections. I know of others that see her and pronounce that she has helped them with migraines, PCOS, GI problems and other health issues. So aside from her willingness to help and learn I wondered why are all these other experts so color blind to my illness and to so many of yours too?

    After thinking about it I realized something Ė itís all a numbers game. On average I go to the rheumy about 4x/year. The pulmonologist 3x/year. The pcp, dentist, obgyn, gastro, ophthalmologist & cardiologist 1-2x/year. I would say the average time spent face to face with any of these doctors is about 15-20 minutes a visit. Thatís it! This means that the rheumy only sees me for 1hr - 1hr20mins a year unless I am super flared. All the other doctors see me about 20 minutes a year. Itís crazy when you think about that. 20 minutes a year. In order for my doctors to see what I see that means I have to present symptoms those 20 minutes I have with them or they think Ė she doesnít look sick. Itís no wonder they all think I am crazy!

    I realized I am doing the wrong thing. I donít usually call my doctors when I have signs or am in a flare b/c I always think itís not bad enough to go or because I can usually just feel better a few days out Ė much quicker than I can even get in on an emergency visit with these doctors. The thing is I really should be calling with all the flares small and big b/c I am the only one who is seeing the whole picture. I always felt like I didnít want to bother the doctors but I am realizing now I need to bother them. Being polite isnít getting me anywhere other than being told I donít look sick so from now on I am going to call with all my symptoms. I usually go to the specialist for each thing too and I have a sneaking suspicion they aren't forwarding my records to the rheumy as requested so I am going to pull together my own binder of medical records. I am taking charge!
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    OMG Sandy this is a great topic! Do you know I was denied SS/Dis because I wasn't going to the doctor when I had a seizure. I thought I could "handle it on my own" and SS/Dis said "there is no proof that you are taking your meds for the seizures because you don't go to the ER when you have one. Are you kidding me? I have no insurance, living on $300 a month and they want me to go to the ER every time I have a seizure? OK then, if that want records I will give them records! So every time I have a seizure I go to the ER, (after having someone drive me) which is 20 min away,( the doctor or nurse asks why I am there because someone with seizure disorder does NOT have to come to the ER for seizure), I explain to them that SS requires that I have a tegretol blood draw to prove that I am taking my meds as prescribed. Every time I hear how stupid that is and they write down that I had a seizure and they take blood. This last time the ER doctor was the same one that I had seen 3 other times in the last month and he said something no one else has said " I can tell you are flaring. I think your doctor is going to have to get the inflammation under control or you won't be able to get the seizures under control." Wow! YES! This is exactly what I have come to realize but no one else (except those here)believes me! Then he said "have they told you that the seizures are secondary to the Lupus?" I said "well, they say that I don't have epilepsy but these are not pseudo seizures because the meds work. They say I have "seizure disorder".He laughed and said " Well let me explain, the seizures are caused by the Lupus so they are real but they can't usually be seen with an EEG because it isn't a wiring problem but a lack of blood flow and/or inflammation."

    Like you I got more information from the ER doc then from all the docs I have seen for almost 2 years and I would have never gone had SS made me! You ARE onto something. We have to stop being nice and make them see us every time we are in bad shape! Only the people that see you on a regular basis understand!

    Thank you for making such a great topic!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Mari,
    I can 100% for sure absolutely positively swearing on a stack on bibles and my dear dead grandma's grave say that funds have been a big part of why I haven't run crying to the doctor for each and every sign and symptom. That and I didn't want to be the "whinny" patient and I think I also feared the hypochondriac label. I can't believe it took me all this time to realize the simple math behind all this. Smh.

    I'm glad to hear the ER doc took you seriously and recognizes Lupus' effects in your body. Can he help you with your SS claim by writing a letter on your behalf?
    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Sorry for all the troubles you are having and all the frustration when we know something is wrong and no one takes us seriously it makes you mad. One time when i went to the er the doctor told me i was constipated and sent me home but i told my rhumeny on the next business day and he ordered blood work and mt sed rate was 86 and my crp was high and he said it was mt lupus. Bonita

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    Sandy;
    I agree with you 100%..call them, go to them, e-mail them, and write to them every single time that you are symptomatic so that those symptoms can be logged in your file. Even take pictures with you if symptoms have subsided by the time you are able to get an appointment (make them paper copies so that they can also be included in your file). Insist that each of these visits/pictures are logged accurately so that each time you visit, there is a history of symptoms and pictures of proof! You are absolutely on the right track!!!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Quote Originally Posted by Saysusie View Post
    Sandy;
    I agree with you 100%..call them, go to them, e-mail them, and write to them every single time that you are symptomatic so that those symptoms can be logged in your file. Even take pictures with you if symptoms have subsided by the time you are able to get an appointment (make them paper copies so that they can also be included in your file). Insist that each of these visits/pictures are logged accurately so that each time you visit, there is a history of symptoms and pictures of proof! You are absolutely on the right track!!!

    Peace and Blessings
    Namaste
    Saysusie
    I had to laugh a little reading this b/c my dermatologist actually asks me for new photos when I go to see him. I haven't been good at snapping shots lately. I will have to become more on top of that again.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Sandy,

    interesting read and goodluck hope you get good news and they peice it altogether like you did.

    lots of love.xxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Sandy,
    I'm a little late adding my 2 cents to this thread. But if your doc does see you in flare, they go oh my god you are in flare!!!! That happened with my rheumy now she constantly reminds me that it is lupus, she re evaluated my meds and now I've got the new one. Who cares what they think as along as they can make you feel better.

    The money issue is more the problem, so call when you are in severe obvious flare and not penny ante stuff.

    Hugs sweetheart, you will endure my youngling. It seems we are all really furstrated lately. Hopefully this period will be over soon.

    Toni

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    Quote Originally Posted by Nonna View Post
    Sandy,
    I'm a little late adding my 2 cents to this thread. But if your doc does see you in flare, they go oh my god you are in flare!!!! That happened with my rheumy now she constantly reminds me that it is lupus, she re evaluated my meds and now I've got the new one. Who cares what they think as along as they can make you feel better.

    The money issue is more the problem, so call when you are in severe obvious flare and not penny ante stuff.

    Hugs sweetheart, you will endure my youngling. It seems we are all really furstrated lately. Hopefully this period will be over soon.

    Toni
    Thanks Toni!

    I sure hope you're right and that we all are relieved of our frustrations soon.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    This is the secomd time I've responded to this thread, Sandy. The first time, I was so excited, thinking "Sandy's read my mind! OMG I don't want to be perceived as that whiney patient either."

    Then I hit the blog this post or some such button with my sausage fingers and Rob had to save me. And in the process I lost my beautifully crafted and well thought out response. Of course it was a beautifully crafted response...... since it's in cyberheck and unable to be retrieved!

    Seriously, you made excellent points about being seen by the docs when you're having symptoms so that your chart is documented accordingly. Then, when you have to file for SSDI or an issue becomes more of a chronic problem, you've got a paper trail documenting it.

    I keep a symptom diary on an inexpensive paper calendar, but it's not quite the same as an OV with the doctor.

    BTW, I've taken pix of all my rashes-which the doctors have appreciated. In January, I took pix of the hair that I left behind in the drain and in the hair brush-in the event it continued. Finally, I am seeing my primary doc tomorrow and I'll be able to show him the pix (and my scalp) and, hopefully, he'll have some answers! But, equally important, I'll have documented something that's been going on for a few months.

    Again, love the thread!

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