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Discussion Starter #1
:(:(:(:(:(:(:(

I went to see my Dr. yesterday.

What a waste of time and money.

His standard answer was applied: "I don't know"

He briefly mentioned sending me for an MRI and mammogram - but since I don't have adequate insurance coverage it's impossible.

He joked about making a new disorder to fit my symptoms. ha.ha.ha. :mad:

*sigh*

I'm so tired of living like this. Even my husband is resigned to it taking another 5 years. I don't know if I can last that long.

The Dr. said that "there is definitely something going on" and implied it could be systemic. He said that I have so many problems with connective tissue that it could be related.

But, no bloods, no tests, no referral. In part because I don't have the right insurance.

and in part because he "doesn't know" and that means it's undiagnosable.

Apparently.

:worried:

I didn't sleep last night again because of the pain - despite the NSAID's he gave me.

It's like I'm standing in the middle of a seesaw (teetertotter) and just waiting for it to swing up or down...

Part of me wishes I could get really sick (and immediately hates myself for that thought) just so I could get a diagnosis and get some focused (ANY!) treatment. The other part just wants me to be well... without pain and all the other symptoms that I have.

I feel like I'm invisible... and with every new unrecognized symptom I fade away a little more...

Not even my voice is heard.
 

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Shufu:

I am so sorry you are going through such a tough time. I don't know where you live, however in the US (there may be similar in UK) you can try going to a teaching or University hospital in your area. Alot of times they will take you and run the tests for free or at a very reduced cost.

I am sorry I cannot offer more information. I am sure that others will come along and offer more or better advice.

Stephanie
 

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The Other Illinois Tammy
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It sounds like you need a big ((((hug)))). Your doctor keeps giving you that answer because you don't push him to do more for you, it sounds like. You have to make your voice and body be heard to everyone. It can be hard. As for him saying something is going on well dah you came to visit with him, don't think so.

I would not spend another sleepless night, I would be calling that doctors office and telling him that what he gave you is not working and you want something that will. If he don't want to treat you like you should be than get another doctor that will. Sometimes doctors are wonderful and you like them but they don't help you much and well if you needed a friend you would not be paying an office call right?

Be active and aggressive in your care as your doctor will listen just to keep you under control. I know it sounds bad but it is not. If they were in your shoes you can bet they would do the same thing to their doctor.

I hope you feel bette soon, and don't be affraid to call your doctor everyday until he listens to you if you want him to do something for you.
 

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I reread your older posts... and would recommend obtaining copies of the blood test results (not just a letter summarizing them from your doctor). Sometimes, there is evidence there that gets missed by GPs but can be pretty relevant. Do you know what your titre was for the ANA that was run? How long has it been since some basic bloods for autoimmune diseases was run? Have you ever seen a rheumy or just a GP?

Sorry to hear it was just another disappointing appointment for you. It is such a bummer to leave a doctor without having a sense of direction... for how to either get a diagnosis or get better.
 

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I'm so sorry,
That yet again you have been fobbed off, i've been there and brought the t/shirt.
Just keep pushing, until the Dr sits up and takes notice.
BIG gentle hugs.
 

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Pollianna
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Shufu;546586 said:
Part of me wishes I could get really sick (and immediately hates myself for that thought) just so I could get a diagnosis and get some focused (ANY!) treatment

.
Whatever you do plz understand that most of us have felt this way. I too often felt that I wished I could go into crisis again to get some treatment and a diagnosis. It's normal and you are not alone in this....i kept fighting and insisted to see a Rheumy, after 10yrs of suffering I am finally diagnosed

You and only you can make sure that your voice is heard, keep fighting. Try and get to a rheumy if you can afford it even if you need to take out a loan IMHO. Nothing is worth going on like this forever

:hug:
 

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If you are in the states, I suggest you check with your state insurance commissioner's office to see if your state has a state funded health plan. Even with the down economy, if your income is under a certain point, you can qualify for supplementation.

Next, I recommend you start to keep a symptom diary. Use a scale of 1 - 10 and identify where on that level you are identifying that pain or condition. Do this several times a day.
Take this with you to your next appt and go thru it with him/her. If the doctor brushes you off, then it is time to start interviewing new doctors. It can be hard to fire a doctor, but sometimes it is the best way. I just had to fire my neurologist due to her not making time for emergency patients. Her next opening is in 5 months! I wrote her a very nice letter explaining in my reasons, and since I haven't heard back from her, trust it was accepted. Never easy to do, but sometimes needed.

Being treated invisibly is not acceptable. If you are not getting help, then you need to make more noise and insist on getting the best care you can. To not get care can lead to more problems with sle than you can list.

Take care, and good luck.
Sally
 

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Sorry Shufu I read your post and it made me so upset that you been treated like this, not sure how I can help, but wanted to send you a HUG

Sheila x
 

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Discussion Starter #9
Thank you all so much for your replies. I am feeling a bit down lately. I'm still not sleeping very well and I'm just not happy over all. My problem with insurance is that since we switched (and since I had so many health problems) everyone wants a huge premium to insure me. My husband is insured through his work, but they wanted almost $1000 a month for me alone. So, I am currently through a company that requires me to pay up front for everything and then file a claim with them for reimbursement. So, obviously I can't afford to have any serious testing done.

I am not eligible for any state programs because I am not a US citizen (from the UK originally, been here 8 years).

I just applied for a new job - back to full-time, not sure if I'm physically or mentally able at this point, but we need the money, and to be honest, I need the insurance.

I am just so tired of everything. Of the pain and the symptoms, of being ignored or dismissed by doctors and friends and family, of being unable to work or enjoy myself.

I come here and read others stories and feel that while perhaps I'm not alone, having to struggle and fight for a diagnosis for years to come... I can't bear that thought. My husband makes future plans without including me - because I'm really not very much use. On a good day I can get things done, but on a bad one it's... just so hard.

I don't know why I'm writing this here. TOday I'm just at the end of my tether. I'm upset and confused and it's not a good pain day. I'm exhausted... but I can't sit back and relax. I have all this stuff to do... and all I want to do is go back to bed and rest.

I'm sorry... :(
 

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Don't apologise Shufu, the medical profession should be doing the apologising. You should not need to keep being put off like this and be suffering so much. It must be soul destroying not being included in your husbands future plans because of the unpredictable nature of this disease... you really do need to see a Rheumatologist who knows about auto immune disease.... could you get bloods done by your GP and then take the results to a Rheumy, maybe try and find the funds for that one consultation in the first instance? You really need to get some quality of life back, even if it means scrimping on other things to be able to afford it.... your health is more important than anything else.... I send you lots of positive thoughts and hugs and hope you can find a way forward very soon.. I also think you need to be more of a pain and impress upon your GP just what you are going through..equipped with as much evidence as possible, ie a pain chart for every day etc
All the best, know that you deserve more and push on,
Claire X
 

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Nettyunicorn
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I can undersatnd just how your feeling! Its not fair or right that you should have to suffer so! I have just come out of a very bad phase and still no definate answers to what is going on. At one point i felt so desperate that i considered hurting myself so as to get into hospital on the hope that they would fully investigate what is going on! I was low and in pain etc etc, depression can be a terrible thing and its hard to think positively when the dark cloud comes down. Now i'm not so down i'm coping better. i know you have heard it before but take one day at a time! sending healing thoughts and gentle hugs!((((((((((((((((((Shufu))))))))))))))))

Nettyxxxx
 

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Hi Shufu,

I am sure everyone told you they feel the same way, and I haven't even been diagnosed yet myself and I feel the same way. I feel invisible, no one believes me, thinks I am overreacting, it is ridiculous. Just now to prove it, I walked up to my roommate who constantly puts down my symptoms and illness even when I had a devastating rash covering my entire body, and showed him my arms after being in the sun, how mottled and blotchy and red they were, and how they weren't like that before and his reply? "You talk about it so much I think you just want to have Lupus or something"... It's sad really.

People's stories from the site have helped me, as well as got me to gain some perspective on the disease, and even if I end up having a different connective tissue disorder, or another disease or nothing all together, I now am more educated and will pass it on to those who suffer from such illnesses, while being able to understand be empathetic. Clearly unlike most people.

I too think about hurting myself, or wishing for a horrible flare to come up so I can land in the hospital and they can then take it seriously, or actually figure out what it is wrong. Do I have to wait until I get another rash covering me, wait for more sleepless nights with burning skin, achy joints, what do I have to do? I understand how you feel and I myself don't know what to do, I haven't even heard back from the doctors in regards to my test results that I ASKED FOR due to the fact I saw a different doctor at every visit at a walk in clinic. Sigh...

I hope you get answers one day soon so you can begin treatment and live life with a new outlook. Thats at least what I hope for, for myself! :)

Take Care.
 

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I hear you,
Been there & at times still there, the hardest thing about it all is the not knowing, i could very easily have turned to drink & other methods for killing the pain.
 

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Discussion Starter #14
That's why I'm so glad a site like this exists. Being able to come here and know that all of you understand is an amazing feeling. You may not be in my real life, but I know you exist out there somewhere... and I know we're all pulling for each other. I think that's all that got me through yesterday. I thought I was the only one to consider hurting myself or to wish something catastrophic would happen (thus making me feel like I really AM making it up, to have such awful wishes).

Today I'm crying at everything... but I called my old therapist and left a voice mail. I hope she will call me back. I can't cope at the moment, and I'm not quite sure what to do about it. There seems to be no resolution in sight--so I guess "Suck it Up" springs to mind.

At the same time that I'm glad these boards exist, it also makes me sad that so many of us must suffer for so long before anything is diagnosed. I wish the medical profession would catch up already and throw away it's archaic system of "if we can't see it, it doesn't exist" in regards to blood tests and other tests. They should amend that to say "if we can't see it, we'll have to look harder"... after all, there is clearly something wrong with us.

I'm so tired. So exhausted - physically and mentally. It's so draining to face the uncertainty of every day. So tiring to keep all the pain and fear and uncertainty to myself. This is the first place I've really talked about any of it.

I feel crazy at times.

Maybe I am crazy - but surely there has to be a med for that too! :rolleyes:

I want to scream that I'm NOT lazy, I'm NOT a hypochondriac, I'm NOT making excuses... that I really, really, hurt physically in so many ways.

Anyway. I've taken enough of your time... thank you all for your support. It means so much to me... really.

:blush:
 

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Shufu,
I'm there as well at the moment, i had a break down at work about a week ago and i've only just stopped crying, anything would start me off, My hubbie only had to look at me & there i was crying.
I to think i'm a nut a times, but i do know that i am suffering here & not getting the help i need & certainly deserve.
Thinking of all of us that are suffering, without help.
Hugs
Sandra.
 

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Shufu,

Sorry to hear that you not feeling well at the moment. I was feeling depressed and managed to get counselling which is helping me greatly. Please contact your Doctor for a referral to someone who can help you. Please look after yourself and thinking of you.

Sending you gentle hugs and kisses
 
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