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Thread: family in denial

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    Default family in denial

    My name is Joey and I've already posted in intro. I wanted to ask a couple of questions here. Last week I was in the emergency room and have a possible WG diagnosis. The doctors are pretty sure I have it they just need to do one more test to confirm. My first frustration is that my rheumy I'd making me wait 6 weeks to see her. She says that it is the soonest she can see me. I don't understand. If I am so sick (which I am) why are they making me wait. I understand that ultimately the doctor has a business but I thought they were in the business of patient care as well. Secondly my family, more importantly my husband and mother, are in denial that I'm sick. My husband wants me to go back to work and while in the pulmonologist office last week she asked the doctor "can't this all be an allergy?". It made me so mad. I thought "do you know how stupid you sound?". I won't take her with me to the doctor again. My husband is a bit more serious since this possible diagnosis but he still looks at me like I'm making all of this up. I also have Lupus RA and Sjögrens. Is there any advice you all have for dealing w family in denial? I know I have to make my health a priority.

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    Continue to make YOU and your health a priority. It's not easy when those around you don't get it or even try sometimes. Many on here have and are going thru the 'family denial' bit, so maybe they will tune in and offer you some advice. You don't want to get to where myself and others have gone because of family or even self ignorance of the problem...I died...then came back...now they understand better after my telling them all I didn't feel well!!! LOL, not a good recipe for family involvement!!! I think one has to develop a bit of a tough skin to get thru all this, because the disease isn't the only problem that results from the involvement. You will get thru it and continue on, have to think of yourself first, not how you or they relate to each other. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Hi. I don't have answers but I have shared this same experience. ER doctors are primarily to treat immediately life threatening situations and then they pass you off to the appropriate specialist and tell you to "See them soon".
    Then, you try and make an appointment with the specialist and they tell you they can't see you for six weeks, because, well, specialists are busy people.
    So, you say, "I am very ,very ill and need to see someone very soon so I can get treatment"
    The reply back is--- "If you are really sick go to the ER"

    Great, they don't do treatment in the ER.

    I am not suggesting this as an idea but sharing an experience I had once. I was very , very sick and was getting the run around. six weeks, six weeks.

    I thought "I'm to just going to lay around and die because of their scheduling problems" so, I just went to the rheumy office and checked in. "Do you have an appointment?"
    "No"
    "We can't see you without an appointment"
    "So, you want me to go to the ER where they will not treat me?"
    "Well..."
    "I'll wait. I'm staying here until somebody can see me"

    They actually found the time because I was taking up space in their waiting room and creating an awkward situation for them. Awkwardness is more of a problem for THEM than me laying at home dying so it gets attention.

    I am very lucky now that I have docs who take me seriously when I say I am sick. There is an open door and they will see me the same day - even though they live with the same kind of crazy, six week, backed up schedule. They know I won't come in unless I am really sick. And WG is not something you can wait six weeks to have looked at.

    If I were to have a suggestion it might be to go back to the ER doc or whoever it is that is giving you this diagnosis and explain the six week problem to them and ask if this is ok to wait six weeks. Of course , they will not think so and may be able to help you to get seen sooner.

    Another option, if this is happening all at the same medical center is to contact the medical director. I have done this one time when I was in absolute agony and was getting the run around. I talked on the phone to the medical director and had an appointment the next day. My doc was a bit miffed that I went around him to his boss. So what. He tends to not give me the run around anymore.

    Whatever you end up doing , do not accept a long wait if YOU know you have to be seen sooner. If you do have WG in addition to your other serious conditions it is even more important that you be seen soon and start appropriate treatment soon.

    Put them on the spot. "It has been suggested by the ER doc that I have WG- is it a good idea to wait six weeks to be seen and then wait longer to get treatment OR is WG something that should be dealt with sooner?"

    Hopefully you are able to communicate with the doc by email. My Medical Center now has a system where I can email questions directly to my doc. This tends to elicit more thoughtful replies and followup appointments.

    As for the family part I could write another book. It is difficult when you need support and you don't get any or worse, you get denial and resistance. Unfortunately in my experience you simply have to become more self reliant and assertive. Some people will eventually get it- others never will. You have almost no control over this. Put your efforts into getting good and timely medical care. And keep us posted here- we get it.

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    Many facilities also have a walk in clinic or urgent care which can offer some limited treatment options too. Often they can get you in to see appropriate specialists quickly. That was how I got into a hospital that eventually lead to my Weg diagnosis. It took a couple weeks since no one had idea what Wegs looked like so I had to almost die first but I eventually got appropriate treatment that lasted several months after i was finally diagnosed and so I survived my Wegs.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Really great advice, me2

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    Anyone who googles WG will get the idea, and the correct one, that a person could die while waiting 6 weeks to get an appointment with a doctor who will treat you. That isn't to say you will die. I waited 2.5 years to get a diagnosis, without having a clue what I had. Once I knew what I probably had, things had escalated, yet I still had to be pretty proactive to get a dx. Once I had it, I was able to get immediate treatment. The docs involved here were not rheumatologists. They were an internist, an ENT, and a pulmonologist. I should have a rheumy, but I don't. Any doctor can prescribe you the right meds until you are able to see a rheumy. But you probably do need a dx; which docs were working on that and what more tests do they have to do? If they find that you have it, why can't they prescribe you some meds to at least get started on? It's not hard to find out what meds are used for WG. To me, it's inexcusable for the rheumy to make you wait that long and I would suggest trying me2's methods or else finding another rheumy or some other doctor who is willing to see you and treat you.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    Anyone who googles WG will get the idea, and the correct one, that a person could die while waiting 6 weeks to get an appointment with a doctor who will treat you. That isn't to say you will die. I waited 2.5 years to get a diagnosis, without having a clue what I had. Once I knew what I probably had, things had escalated, yet I still had to be pretty proactive to get a dx. Once I had it, I was able to get immediate treatment. The docs involved here were not rheumatologists. They were an internist, an ENT, and a pulmonologist. I should have a rheumy, but I don't. Any doctor can prescribe you the right meds until you are able to see a rheumy. But you probably do need a dx; which docs were working on that and what more tests do they have to do? If they find that you have it, why can't they prescribe you some meds to at least get started on? It's not hard to find out what meds are used for WG. To me, it's inexcusable for the rheumy to make you wait that long and I would suggest trying me2's methods or else finding another rheumy or some other doctor who is willing to see you and treat you.
    Once I finally got diagnosed I nearly died even with correct hospital treatment in three weeks. I know I never would have survived six weeks waiting to see some one to begin treatment but then not everyone has a real severe case but Wegs severity can change quickly in a few days.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Joey, I was in really bad shape the first time I seen my Rheumatologist. my local doctor at the time was concerned enough he got the rhumy to work me in the next day. as I recall I was there quite awhile as he kept going to his scheduled patients but luckily he made the time to see me and get me admitted to the hospital. Without the DX of Wegener's yet I had to be hooked up to an IV for fluids for dehydration in order to be admitted to fast track all the tests.
    there was two other instances in the first year of my diagnosis that I called his office and he seen me the same day.
    I'm sorry your having issues with your family being in denial. but if your having issues keep asking to be seen ASAP.
    Dx'd December 2000

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    Quote Originally Posted by djasher2000 View Post
    My name is Joey and I've already posted in intro. I wanted to ask a couple of questions here. Last week I was in the emergency room and have a possible WG diagnosis. The doctors are pretty sure I have it they just need to do one more test to confirm. My first frustration is that my rheumy I'd making me wait 6 weeks to see her. She says that it is the soonest she can see me. I don't understand. If I am so sick (which I am) why are they making me wait. I understand that ultimately the doctor has a business but I thought they were in the business of patient care as well. Secondly my family, more importantly my husband and mother, are in denial that I'm sick. My husband wants me to go back to work and while in the pulmonologist office last week she asked the doctor "can't this all be an allergy?". It made me so mad. I thought "do you know how stupid you sound?". I won't take her with me to the doctor again. My husband is a bit more serious since this possible diagnosis but he still looks at me like I'm making all of this up. I also have Lupus RA and Sjögrens. Is there any advice you all have for dealing w family in denial? I know I have to make my health a priority.
    When it comes to Wegeners or any other illness or injury, its always you first!
    I had to complain about ailments for nearly 5 years only to have a full blown flare before they found my Wegs.
    I even got to a point where maybe all these issue I was having was all in my head and was ready to start shutting down and ignore health problems because it felt like no one believed me when I explained some symptoms that I had no idea what it was!
    Yes, Drs can be hard to get into see with in a week especially if they're title has a field of specialty behind their name!
    I have found that I can go to my family Dr and through her, she can refer me and I get in with in a couple days!
    Just a piece of advice, have a family Dr in the fold as part of your wegs team and make sure they shared info from all Drs that are involved in your treatment! My Rheumatologist advised me on this when my first Pulmo left abruptly and wanted to make sure that I have a permanent one to the group. My first one was here on a Visa and left a week early and I didn't know til I went to my Nephro appt. and I got lucky and got to see one of the new pulmos in that office but he was only going to be around for a year on a Visa and the RA said that we need people on the team that can be in the know if I should relapse and they will need to hit the ground running if I run into complications! He stressed that there would be no time to bring a new Pulmonary Dr up to speed every six months or so!
    Nobody knows how we got to the top of the hill. But since were on the way down, we might as well enjoy the ride!
    James Taylor, Secret Of Life

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    Quote Originally Posted by djasher2000 View Post
    My name is Joey and I've already posted in intro. I wanted to ask a couple of questions here. Last week I was in the emergency room and have a possible WG diagnosis. The doctors are pretty sure I have it they just need to do one more test to confirm. My first frustration is that my rheumy I'd making me wait 6 weeks to see her. She says that it is the soonest she can see me. I don't understand. If I am so sick (which I am) why are they making me wait. I understand that ultimately the doctor has a business but I thought they were in the business of patient care as well. Secondly my family, more importantly my husband and mother, are in denial that I'm sick. My husband wants me to go back to work and while in the pulmonologist office last week she asked the doctor "can't this all be an allergy?". It made me so mad. I thought "do you know how stupid you sound?". I won't take her with me to the doctor again. My husband is a bit more serious since this possible diagnosis but he still looks at me like I'm making all of this up. I also have Lupus RA and Sjögrens. Is there any advice you all have for dealing w family in denial? I know I have to make my health a priority.
    Sometimes it takes family time to understand and come to terms. Take your husband with you to doctors appointments maybe it will help him. Is the another Rheum you can try to get into quicker? If not ask they realise this is life threatening would their insurance policy cover them if something happened during the six weeks you are waiting. I got doctors to pay attention by telling them they were negligent. it's surprising how the "n" word gets results. Good Luck

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