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I'm in a flare and not having a very good day.

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  • I'm in a flare and not having a very good day.

    I've been in a flare for a few days, post-period. Not sure if this flare is just because of my period (I had been doing really well) or if it's just the lowered dose of CyA catching up with me and this means I will be in a flare from now on.

    The last couple of days haven't been so great.

    I went to a surgeon for a consult about the mass in my breast. Have to have it removed. Anyway, the doctor called up my information on the screen, and asked, "why do you have PTSD?"

    This is military healthcare, and so my mental health diagnoses are there for every insensitive doctor to see.

    I had not been told this would happen (it's never happened before to me, and happened only because I followed my urogyn's advice and went to mental health and they entered diagnoses on me into the computer) and I was completely not expecting to be asked such a question. I was there to talk about the breast surgery, not the fact that I was sexually abused from the age of 5 on by the men in my family.

    Since I didn't have time to think about the answer to the question, I blurted out the truth about the sexual abuse. This doctor didn't give a dang about me, he was just idly curious. And he seemed annoyed that I told him the truth. He said he really didn't need to know all that. Well, doc, if you ASK me why I have PTSD, you ought to be prepared to get the answer, no?

    So now every time I go into the doctor with any health complaint - to get refills on meds, etc. - I am going to have to field questions about PTSD that I really do not want to answer. If I say, "none of your business" then I come across as a witch, and no doctor will help me. If I tell the truth, I am (like I was on Wednesday) humiliated.

    I don't want this doctor to operate on me now. I don't feel comfortable with him anymore because of this. I wish I had thought more quickly of a better answer, a good lie or something, but I didn't, and now he knows things about me that I didn't want him to know. I told my husband I was going to cancel the lumpectomy/biopsy, and he said he would make sure I had the operation even if he had to drag me into the hospital.

    I also found out that one of the diagnoses (because I needed to know what the docs were reading about me, so I asked - they never told me before then what my diagnoses were, guess the mental health professionals felt it was none of my business) was concerning chronic pain.

    It was some diagnosis of chronic pain exacerbated by psychological factors. I asked the doctor what that meant, and she said (not in so many words, of course) that it meant some of the pain was physical, and some of the pain was all in my head. She did not state what percentage of each was which. So I don't know if the diagnosis means 90% of the pain is real, and 10% is imaginary, or if it's 50/50, or if 90% of it is imagined and only 10% is real.

    Anyway, one of the worst fears of an IC patient has come true for me, LOL.

    This means that every doctor I go to from now on, will believe none of my health complaints are real. They will not believe I am in any pain from IC or that I really have IC. Maybe even my urogyn does not believe I really have IC.

    I'm never going to receive good healthcare again, at least not in the military system.

    I've decided that if my IC is just pretend, maybe my kidney disease is just pretend too, so I don't have to bother getting blood drawn every week, or bother reducing the dose of CyA. I can do whatever I want, since none of my health complaints are actually real.

    It's been a really crappy week. All in all. I hope I get over this flare soon. I haven't slept for a couple three days I think.


  • #2
    I'm so sorry that you're having such a hard time Lori. That's horrible what happened at the doctor's office, I know I would have freaked out. I hope that you start to feel better soon.

    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus


    • #3
      I hope you are feeling better soon. You know you cannot give up on looking after yourself. Give yourself time to get over this.


      • #4
        awww Lori (((((((((((hugs))))))))))))..I know how you feel, my doctor thinks its all in my head, but hes the that dg me with IC...I hate doctors..

        But anyways I hope that you get to feeling better soon...

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

        Link to Patient Handbook:

        Diet Reference Sheet:

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

        ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


        • #5
          Flare flare go away Lori needs a super day.

          I hope you feel better soon.


          • #6
            I am SO sorry! Not only do you have to worry about your surgery, but now about this stupid diagnosis popping up on the screen. Is there any way that you can petition to have it removed? I mean really, any psychological information is really none of these doctors' concern...and you could even use Dr. Insensitive's response to back up your claim that it shouldn't be in there. I mean, Hello! It's PTSD...obviously having to relive it whenever some stupid doc asks you about it isn't helping you any!

            You should definitely NOT be humiliated, though!!! You didn't ask for what happened to you and there is no shame in it.

            As far as the surgery, can you ask to change doctors? If so, that might be your best option. You certainly need to feel comfortable with and trust in the doctor that is operating on you. If you can't change, then I think you need to confront the doc about asking you in the first place and then the little comment he made. I would guess that you could also complain on him to the military and to the AMA (is that right?)...but you might only want to do that if you can get another doc to treat you.

            Good luck to you!


            "A heart is not judged by how much you love; but by how much you are loved by others."
            ~ The Wizard of Oz

            "If I ever go looking for my heart's desire again, I won't look any further than my own
            back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


            • #7
              Lori, I don't know for sure, but I would think that HIPAA guidelines would prohibit everyone from seeing your MH diagnoses, and I'm pretty sure that HIPAA applies to military docs as well -- it does with other federal entitities. There are other Mental Health privacy laws, too, and I can't imagine the military is exempt?!

              Also, it doesn't seem right that there are diagnoses listed there that you aren't in agreement with. I know it's the military, which makes it harder to fight, but I think they need to address these issues! Is there any type of patient advocate you could talk to?


              • #8
                Hi Lori,

                I am really sorry you have to deal with this crap!
                I am not familiar w/military ins etc.. Maybe you can go to a different doc outside this place ( if that is possible ) I am a very low income person, so i understand if that's not pssible.
                I wish i could say or do something to help.
                I'll be praying for you and i know you will be feeling better soon!

                Diagnosed w/IC 7/18/05
                Dx'd w/Endo 5/5/06

                Current Treatments:
                Elmiron-100mg 4x's a day
                Atarax-10mg's 2x's a day
                IC Diet
                Oxycontin 40mg-Only when i can't take it anymore!

                Laparoscopy done, Endo lasered, Let's pray it stays away!

                "If you haven't gotten all the things you want, be grateful for the things you don't have that you don't want."


                • #9

                  I experienced some things of the same caliber w/ the military healthcare system also. I may be of some help to you because after a process, my husband and I were able to get my providers OFF base and now the "mental" crap (such as the accusation of addiction and psychological pain) does not factor into my care. I have an off-base primary care manager who does all my referrals and now all I have to go onto base for is meds if I choose. We have the prime insurance at the cheapest out of if you want to discuss this and I can tell you what we did and what my husband recommends, please call me *******. Praying that you get some resolution and I would be glad to help you understand a process that many people do not know about and I did not know about until about three to four months research and talking to different people.

                  I would love to help you.
                  April Chen
                  USAF Wife

                  Note to April: I removed your phone number from this public forum; I suggest you send a private message with the information.

                  Last edited by ICNDonna; 02-24-2007, 04:08 PM.
                  Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.


                  • #10
                    April and Lori,
                    Lori, you know where I have been with the labels at the last post we were at. Once Dr. Ratbag(you gave him the name, remember?)got ahold of me, I became the resident drug seeking wack job of the century. Military health care for chronic health problems is like Russian roulette. I had some great docs who treated me well and then they deploy, separate and you get assigned to the new dreaded PCM. I even gave Patrick a chance and it was worse than California. You would think they all skipped the chapter on urology in PA or medical school. Having been a spouse, child and active duty, I can say I have been treated by far the worst as a spouse. Then you have the whole EFMP thing and it follows you around forever. Even after seeing civilian docs and the findings contradicted the military ones, the military docs went ballistic. I know we talked along time ago, and Lori, please call again if you need to. April, I will be glad to be in contact with you as well. If we need to for an IC Military Spouses group, I would be glad to help. I still have good connections in multiple services. Hugs to both of you.

                    (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

                    [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
                    :angel: IC Angel Volunteer Coordinator :angel:
                    :) Contact me via PM or e-mail if you would like to help
                    I have learned all about life in 3 words: It goes on! :D--Robert Frost
                    PCOS 7/85
                    RSD 7/94 :headbang:
                    Endometriosis 9/98 :toilet:
                    Antiphospholipid antibody syndrome 9/99
                    Kidney stones--too many to count
                    Factor V Leiden mutation 10/02
                    IC 6/03 :evilsmile
                    Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
                    "Spirit is an invisible force made visible in all of life"--Maya Angelou
                    "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]


                    • #11
                      Thanks you guys so much. April, I think I will ask my husband if he would be willing to help me with this (since he will have to be involved, I'd imagine.) Did a lawyer need to be involved? Just asking so that we can get an idea of what costs might have to be paid up front to get the chance to get my care off base.

                      It sounds like you guys have all had pretty miserable experiences too with military health care.

                      I've had some great doctors, but I've also had some horrible experiences, and this experience - being told my IC and my pain is all in my head - is a really bad one. And one that I think will adversely affect my ability to get healthcare from these doctors, in the future.

                      Thank you all so much, still in the on-going drama, hubby is going today to talk to the psychologist who entered the diagnosis, to try to explain to him the harm that is being done to me by every single doctor being able to access information about my mental health, and by giving me a diagnosis saying my IC and pain are all in my head.

                      P.S. Still flaring, but maybe not so bad today. Hard to tell, it's still early.
                      Took ibuprofen and celebrex and other no-no drugs this weekend because I just didn't care, didn't care about my kidneys, just fed up and ****** off at the world I think.


                      • #12
                        'The will of God will never take you where the Grace of God will not protect you.'


                        • #13
                          Thanks, Tigger Gal I love the photos of you with your little ones! You are very pretty and your little ones are such angels.

                          I wasn't having a very good day on Saturday. In fact I was having a very bad day. And I'm not really very good at reaching out to people when I should be.

                          And I didn't feel I could call mental health, because they are the ones who decided my IC isn't a real disease. So it's hard to trust them after that, you know? You wonder, what further harm are these jerks going to do to me?

                          And I didn't want to bug my Pastors, they've got deaths they are dealing with and divorces and people having surgeries and all kinds of things, and I just didn't want to demand so much attention. And I'm ashamed, too. I feel like I ought to just have a better attitude about things.

                          I feel like if I just had the right attitude, if I were just a better person, I wouldn't be asking for pain control, I wouldn't mind not sleeping at night because of the IC.

                          And maybe they are right, maybe it's all in my head. I mean, there are physical findings that I'm not sure can be accounted for if one believes it is all imaginary, but...shrug. But how would I know if I were insane or not? How does anyone know for sure they are sane and not imagining things? And if it's all in my head, then how do I fix that?

                          I was having a really bad day on Saturday and I was crying a lot and feelnig very betrayed and violated by my doctors and I thought, well, you know, my soul is hurting, I'll just take some ibuprofen and celebrex and pyridium because they are nephrotoxic.

                          So today I went in for my weekly renal function test and my creatinine is 3.1 and my GFR is 17. I asked for a phone consult from my nephrologist - I wanted him to see these results - and someone from his office (a nurse?) called and I gave him the number of mental health and a point of contact and told him to tell Dr. J. right away about the creatinine level and told him to tell Dr. J. to ask the guy in mental health if he knows any reason in particular why my kidneys would suddenly get a whole lot worse.

                          So I am sitting here waiting for a phone call, waiting for the police to show up at my door, waiting for my husband to come home and yell at me and tell me I should have told him, tell me I shouldn't have reacted that way, what is wrong with me, etc. Waiting for something.

                          Don't know if I will be on the boards much for awhile. Don't really know what they will do with me. Probably lock me in a room for awhile and yell at me a whole lot and tell me what a bad person I am. Shrug. Like I care after all the other crap I've been through in my life.



                          • #14

                            The short of it is with my situation and probably yours, you won't need an attorney. Another helpful person to talk to would also be Barb. She was on all sides of the military and said something about some things she knew to do.

                            The way we did it (my husband and I) was long..about three months. We talked several times to the patient advocate at the hospital and she DID NOTHING, but log our complaints and that's it.

                            We got tired of the complaining for valid reasons (a.k.a. the ER saying my pain was ALL in my head, them not calling when a culture was positive and antibiotics were needed). They basically dropped the ball BIG TIME on my care. My husband was so angry, but trying to control his emotions because of his career.

                            Anyway, we went up the chain of command in the medical group and ended up writing a letter and scheduling an appt. with the Commander of the medical group. He was a Colonel, but turned it over to a Major who took care of it within a week. I had a new PCM within a week, because I detailed my issues with family practice and the care I received in a letter to the Commander.

                            Last night, I talked to my husband and he said there's another way to make complaints, really about anything on base, including medical too. He said we could go to the Inspector General on base and make a complaint. We could have went this route, but someone at Tricare's referral management office at the base hospital took the time to tell us about going through the chain of command.

                            Also, I must add that before getting married I had a pain management doctor. When I got married, my insurance changed and the Tricare we have requires referrals to all specialists. Also, the doctor I initially saw felt, "I did not need a pain management doctor.." and she STOPPED ALL MY PAIN MEDS COLD!! I was on a 75mcg Duragesic patch and Dilaudid for Breakthrough pain. OMG, I have never hurt so bad! Not only did I have horrible pain, but I went through unimaginable withdrawals....all while my husband was TDY in California (we live in MS) and I had no one. I cried and threw up with pain for three solid days until I broke down, called my neighbor and went to a civilian ER. There, I told them what happened and the hospitalist admitted me, stating that this was terrible what they had done and that I could have had seizures given the high doses of narcotics which WERE NOT tapered off. I knew this anyway, but felt I had no way out.

                            Needless to say, once I wrote all this out to that Commander AND that about my negligence in their facilities and they worked quickly to change it. Perhaps these are some things you could try.
                            Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.


                            • #15
                              Oh, April, dang, I'm sorry for what you went through. It's just not right. You know, there are some really good individual docs in the military, honestly, but the biggest problem I have with the system is that it doesn't seem to be very good at self-monitoring or making corrections. What I mean is, no one seems to care when horrible mistakes are made or docs are jerks. Nothing gets corrected.

                              I'm so sorry this happened to you. BTW, is that you in the photo? Very pretty. Is it a wedding photo?

                              Wow. Thank you for the info. I actually know the hospital deputy commander, from my volunteer work I do. He seems caring. I actually sent a copy of a letter I wrote about Dr. M. asking me about the PTSD and asked his help in making changes to the system so no other patient would ever be put on the spot like that. He hasn't answered back, but he is in other parts of the hospital and does not come by his office all the time so I have no way of knowing if he got the letter or not. And it could be, he got it and just needs some time to work on the issue before getting back to me. Or he might just consider me a whiny troublemaker and not want to help me. Who knows. Shrug.

                              Anyway, still waiting for the other shoe to drop. I don't feel very well today, I can tell my kidneys aren't doing well. Wonder if they will go belly up entirely? I should care a lot more than I do, I think. But I don't really.

                              Wonder if they are just going to kind of let me die at home? Wonder if they think I am just a spoiled brat trying to get attention. Hmmm...maybe I am.

                              We'll see what happens.

                              P.S. Thank you again so much for your help. I will try to see if we can go up the chain of command. My husband has an appointment today to talk to the psychologist who was my counselor. I hope that maybe things will be resolved. I think I need to be an inpatient for awhile, frankly, not for my IC but for other issues, but we will see what they decide to do.