I don't know how to live with the 307.89 diagnosis

[ICLori]

I feel overwhelming shame at having been diagnosed with 307.89, which is chronic pain associated with psychological factors AND a general medical condition.

Every military doctor I go to from now on will see me as a malingerer, and if I have a complaint of pain from, say, kidney stones, they will ignore it and send me on my way instead.

I feel since I got this diagnosis, the doctors have been treating me differently. As if I were crazy. I mention the IC, and the pain, and they don't say a word - and now I realize it's because they believe it's all in my head and they don't want to further support that delusion.

What am I supposed to do, just not go to any doctor in the three years my husband has remaining in the Army?

How can I live with this much shame? The psychologist tells me I just need to change my beliefs about this and everything will be fine, but how can I change what I believe? I tried and the belief is not budging. I believe I have IC, and I believe I have real pain stemming from IC. I don't believe it's all in my head, and I don't believe I deserve the stigma and public humiliation that come witih this label.

I looked up more about pain disorders, and it said, pain may be associated with a general medical condition, but that pain must be GROSSLY IN EXCESS of physical or laboratory findings.

So because I ask for an Ultram to help with the bad nocturia I have at night, which interferes greatly with my sleep, I am grossly exaggerating my pain?

I honestly wish I could just die.

I refuse to have anything else to do with those "Life Skills" backstabbers. I feel I was just punished because I have IC. I don't feel they were helpful at all to me. All they did was criticize me constantly, telling me I wasn't using the right words, and they'd badger me until I used the words they wanted me to use. There was never one note of empathy/sympathy for how I've struggled with the IC pain, nor for the abuses I suffered in childhood.

Even a criminal gets a right to a fair trial - I didn't get a fair trial for this charge at all. Why don't I have the same rights a criminal does, for this?

I really wish I could just die of a heart attack or something right now. I don't know how I am going to bear this shame and humiliation. I feel like they are saying I'm a worthless malingerer, that I don't deserve medical treatment for my disease, that I'm a really bad, bad person. And I feel every doctor who treats me is thinking those things, too.

Does anyone know, how I can live with this shame? Has anyone else had that label applied to them, when they went for counseling for depression caused by chronic pain?

Thank you guys for listening to me. I can't stop crying.

Blessings,
Lori
P.S. I'm looking into TRICARE approval to be treated off-post for mental health (so these people here can't get their hands on any of that information) and I won't make the same mistake twice - NO WAY am I ever telling any therapist again about IC and pain, no way will I admit to having any disease or feeling any pain. No way will I ever tell them about what happened to me as a child. They just twist everything and try to use it to punish me.

[tigger_gal]

First off and formost you are not a bad person, you are a great lady, a wonderful source of support for others and a friend.
Who was it that dx'ed you with this? I have never heard of it. Can you go out side the militery doctors? I think this is wrong, and I would fight to the bitter end to have this taken off your medical record. Just because "they" think you are not in pain, dose not give them the right to assume you are not. They are not in your body, and it is not in your head. Just because they have a MD dose not make them superior to you.
I know how much we struggle, mentally and physically, and fininicially, but I think it would be a great idea to call a few atty's and get a free consoulatition.

I am so sorry that you are being put thru any of this.

[SharonA]

Lori...I wish I knew what to say; what to tell you to help you. I am so pitifully inept to give you any solid council. The only words I have for you is that I care deeply about what you are going through and what you have experienced.

We all know that the pain of IC is very real. We all know how difficult it can be on our mental and emotional health to suffer day in, day out with this chronic, unrelenting pain. And we all know what it feels like when it seems that no one understands or believes us when we say we are in dire pain.

My only suggestion for you is to take your health care away from the military and go to civilian doctors. I know the military owes you proper health care, but they just don't seem to be able to give that to you.

I know how frustrating it is trying to find doctors who will understand and give you the medical help you so deserve. That's the magic word, isn't it? Deserve. Don't ever let anyone in a white coat make you feel that you are not deserving of proper medical care. YOU ARE!!!!

Lori...In your heart of hearts, you know that you have the power to continue and to persevere. There are so many of us here who believe in you and for you. Stand firm and take what you deserve.

I am sending you many prayers for strength and for peace. Reach out and take hold of these prayers and don't let go.

[ICLori]

Thank you so much for your support, Tigger Gal. You always help everyone here, even when you are struggling with a million hardships in your life.

I have looked into going off-base, and was told since I have TRICARE Prime, I could not. I am attempting to at least get my mental health care off-base, so there will not be any communication between my mental health worker and the doctors on post. In order to get this, my doctor needs to put in another referral, and then Life Skills must approve it by doing some paperwork. Otherwise, I have to pay out of pocket. My husband said "no" to that idea, of paying out of pocket, and "no" to the idea of seeking legal advice on this.

Thank you for agreeing with me that this diagnosis is not fair. It's nice to know other people would have been offended by this, too! Maybe they wouldn't feel the extent of the shame I feel - I'm kind of hypersensitive - but they'd at least feel it was not an accurate diagnosis.

The thing of it is, my doctor feels my pain is from IC (at least this is what he tells me to my face) and he acts like I have real pain, since he's giving me Ultram and CyA and a referral to a pain management clinic (30 March.) But yet he does not challenge the therapist (he has spoken with the therapist, they are coordinating my care so to speak) or the diagnosis.

I have tried to bring in articles, etc. about IC so my therapist could learn - he doesn't even have his PhD yet, he's a therapist in training - and he has no medical background whatsoever. But he seemed to think I was being "sensationalistic" in what I presented, because I presented Dr. Brookoff's talk where the rat tried to eat it's own bladder, and I presented information stating the quality of life for IC patients is lower than that of dialysis patients. He said by exagerrating like that, I lost all credibility. And you know how it is, once those therapists make up their mind, there is no arguing with them.

Anyhoo, the doctors have been treating me differently since I got that diagnosis. If I mention IC at all, they just clam up, and keep a neutral face. I guess they don't want to feed into the "delusion" that I have IC and have pain from IC.

My Nephrologist confirmed my worst fears when I asked him what he thought the diagnosis meant. He said he thought it meant my pain was psychogenic rather than organic in origin. (Mental, not physical.) Every single doctor has access to that computer screen, and will see that diagnosis for every visit I make.

I really do think this will have a negative impact on my ability to be credible to doctors, a negative impact on my ability to get good health care.

Thanks,
Blessings,
Lori
P.S. Thank you so much, Sharon, for your kind and soothing words, and for the prayers! They really help me. Unfortunately, I don't seem able to get my care off-base.

[leelee88]

((((((((((((hugs)))))))))))

Lori,
You are a wonderful caring person, You are not a drug abuser.. You are a woman who deals with terrible pain eveyday!..It makes me so mad that the medical field wants to put a label on someone..

It is very hard to think positive about things when you have everyone else putting you down..Doctors can be so crule, I wish just one mean doctor would get IC and see what we deal with on a daily basis. I know how you feel about not being able to get pain meds. My doctor will not give them to me either Its just not right for us to have to suffer when there is relief out there!

You stay strong and if you need anything let me know...
God Bless You Lori

[ICLori]

Thank you so much, leelee! Thank you for understanding why I feel angry and humiliated. I know you are also struggling with doctors who will not recognize the very real pain of IC, who are indifferent to our suffering.

I really wish I could get my care off-base.

I just don't know what to say to myself when I go to a doctor to get care - is there anything I should be telling myself, that will help to take the sting out of the humiliation I will feel when the doctor treats me like a lunatic instead of a patient, and doesn't believe me when I report symptoms?

Blessings,
Lori

[Portia17]

CAN YOU TRY AND GET PAIN MGMT OFF THE BASE

PRAYING FOR YOU

PORTIA

[ICLori]

Oh, yes, they don't have pain management at all on-base - so I am going off-base! So that is one good thing.

But every other appointment I have - urology/urogyn, nephrologist, etc. has to be on-base.

I'm hoping I can at least get my mental health care off-base, but have yet to hear from my doctor on that (he has to put in a referral for that.)

The only reason they are sending me off-base for pain management, is because they don't HAVE pain management on base at all. So when they don't have a doctor in a particular field, it's deemed okay to send you out, because they realize it's not right just to deny a patient care.

Blessings,
Lori

[Trishann]

Hey Lori, Years ago I was getting these severe headaches. I went to my doctor to receive help and he asked me if I was under stress. I did not tell him I was because who is not under stress these days. Well he said I needed to see a psychologist, and I thought, I needed to see a psycholgist because I have these severe headache, to me he was telling me it is all in my head too which causing the pain.

Well it was time for my eye examine. I told my eye doctor about the headaches. He said "Trish I know what is wrong, you have a lazy eye since you were little right." I told him I did. "He said the reason why I can tell, even right now, you are only using one eye as you are speaking to me." And I realize then I was doing just that. He said because of having patches on my eyes they were trained to be use at separate time, and after the patches came off I did not train the eyes to work together again. I would make things worse now because I am older. He said these migranine headaches are really eye migranine.

Why I told this story to you Lori, doctors are not always right. Yes I was under stress but I knew something else is wrong, but did not know what it was. Lori you are right, this IC and the pain it brings do sometimes affect you emotionally. Living with pain will cause it and it is so real. When something is wrong your body will alway tell the truth. I am so sorry there are some people that just can't understand it. I hope somehow this therapist will learn the truth, and who knows, maybe it will be you that will get the therapist to understand it.

Lori, again I am so sorry, I hope things will start getting better for you.
Sending hugs, Trishann

[leelee88]

Lori,

If it was me and I was going to try to see a Doctor off base, I would try to find one that specializes in IC there are Uros who know alot about IC, I am in the process of finding a new one.. You can research the URO online..
Also I would ask for my medical files JUST concerning the IC, to give to a new Uro if you find one, You can decline if they ask to see all your medical records.. Just let the Uro know you are there for bladder pain..

See I have been dg with depression, but I do not find its any of my Uros bussiness.. He is a Uro.. He does not need to worry about my head he needs to worry about my bladder...
Not my mind!

I hope you can find someone new who understands you, because I know that when you are in pain and feel like no one is listening that can make you feel like maybe it is all in your mind..BUT we know its really not! The pain is there and its not some imaginary illusion...

My family thinks its all in mt head, that I am making it up so I can get pain meds...lmao..They just dont have a clue...

But you hang in there girl...You have to stay in this fight with all of us, because I do believe there will be an end to this disease soon..

(((((((hugs)))))) again!!!

[humpieumpumkin]

Lori,
I just want to share something with you. I know that since they are "doctors" we assume what they tell us is the 100% truth-no margin for error. THis is why we lose hope when they tell us something we know is not true. "My doctor said I had Gallstones so he took out my Gall bladder." They learn after of course, it wasn't gallstone at all but a peptic ulcer! When I was little and i'll never forget, I told my mom I had a sore throat and it felt like streep. She took me to the doctor yelled at me the whole way, then told me I was faking or it was just a virus. The doctor looked at my throat-which was visablly covered with the little white patches from hell, and told me "post nasal drip" was causeing my throat. I was NO your wrong. My mom was very upset and the doctor reluctantly did a quick test just to prove me wrong. My mom spanked me hard after the doctor left the room for embarrassing her. He came back 10 minutes later and appologized to me for not listening, I did in fact have streep. Since that point in my life I have always had a gaurded opinion of doctors. I know my body and I know whats going on. Sometimes they let there ego's get to them, and they hear you, but dont listen. We know your symptoms are real, you know your symptoms are real. If a doctor won't help, fire them, move on to the next. You will eventually find a caring compassionate doctor who is so willing to help! You are doing the right thing to get away from the military doctors. As a rule pain is weakness to the military so they are terrible at treating it. The military docts tend to be ruff around the edges. Good luck to you. I am here to support you.

Erika

[Trishann]

Lori the reason why I did not say leave the military's doctors because my daughter is also marry to a military. I know sometimes it is hard to be able to go someplace else especially if the military do not grant it for you. I know sometimes they do and sometimes they don't. If they don't I know you will have to paid for it then. Whatever you decide I just hope things will get better for you.

Sending hugs, Trishann

[Want2BPainFree]

Hi, there. I don't know you yet b/c I'm new here, but a couple of things I want to say to you I can type really quickly here.

There is nothing to be ashamed of. I don't know what happened to you as a child, but that is nothing to be ashamed of either. Please do not allow other people's ignorance of your pain (physical AND emotional...in that order) make you feel shame.

Also, I actually feel from reading your post that getting away from that whole environment of "medical care"....using that term loosely might be the best thing for your IC pain.

The thing is: this isn't the chicken or the egg question. We all know as IC sufferers that your angst and your depression and your hurts intensified after IC came along for you. We all understand that b/c we suffer as well. They won't understand until something causes them relentless pain and changes their whole outlook on life.

I have NEVER known one person with chronic disease and/or pain that didn't go through some sort of grief process of denial, anger, acceptance, etc. If these doctors cannot help you achieve the end goal of that process for all of your entire being, move on from them, they are no use to you.

At this point, a solitary spa retreat might be exactly what you could use. I wish the military would pay for that for you, but I know they won't.

[SharonA]

Lori...You wrote: P.S. Thank you so much, Sharon, for your kind and soothing words, and for the prayers! They really help me. Unfortunately, I don't seem able to get my care off-base.

I am sorry that I did not do a better job of explaining what I was trying to say. Granted that it has been a vey long time since I was connected with the military (former Air Force Brat and Air Force Wife), but somewhere in the back of my brain I seem to remember that you can take your care off-base if you are willing to pay for it yourself. You bet that would be expensive and I do not know if you are in a financial position to do so, (please do not respond about this since it really is none of my business) but it might be worth discussing with your husband.

[Babs RN]

Lori,
PM me, I think I might be able to give you some suggestions.

Hugs,
Barb