(no subject)

[thekyttn]

Warning: Long rambly whiny post (and possible TMI) beyond .

It has been a long hard week between handling unpleasantness at work, issues with the infusions, general fatigue and not feeling well, and the usual grief over Greg's absence.

Tonight I finally got a call back from the NP I usually go to in response to the multiple calls I've made this week. He brushed aside all my concerns without really answering anything and acted like I was being a pain for having called. I'm not at all good at advocating for myself and getting questions answered. I've been on the receiving end of difficult patients and I try very hard not to be one. I don't have any issues/concerns about going in for another infusion, I like having the time to myself, even though it is very tiring. S, the NP, is convinced that my jump in blood pressure is from my anxiousness over the infusion, though I am not aware of any anxiousness. I asked whether it could be from the infusion (I receive sodium ferritin gluconate), and was told it was probably just stress and I should take Tylenol and Benadryl an hour before my next infusion and that would help. He asked about the energy levels and I told him I think I feel slightly improved over last week (gone from limp dishrag status to limp noodle), but that I'm still having menstrual/vaginal bleeding which has been non-stop since before I saw him on the 9th of February, and that I was sure that wasn't helping. I got a non-committal noise in response and was told that he didn't expect to see a drastic improvement, but that I would slowly improve.

I ended up feeling like I'd been a bother and a hypochondriac, and not having any more idea about what is going on or what will happen next than I had before. I'll probably try again to make an appointment with my Gyn, though they don't want to see me while I'm bleeding, but want me to call when I stop so that they can work me in within a couple of days. The problem is, I haven't stopped bleeding for more than 24 hours in over a month. It usually isn't heavy, just steady most of the time, but enough to be gross and uncomfortable and embarrassing for me and unpleasant for anyone examining me. And I'm scared to go for an painful pelvic exam without Greg to stand by my head and hold my hand like he did the last couple of times. Maybe I do need to just stop worrying about what is causing the problem and just deal with the symptoms.

I feel lost, alone, and totally unable to cope.

I'm trying hard not to reach for the Benadryl again tonight, but it was really nice having a few hours of blankness last night. I'd dearly love to do that again, but instead I'm going to try going for a drive and maybe out to IHOP or to a movie if I can find something that sounds remotely worth going to alone. Or maybe I'll just go to the store, which will be closing soon, and get some work done at my own pace on my own time. I don't know. or maybe i'll just go to bed.

Comments

[filkerdave.livejournal.com]

Hugs. Just to let you know that I care

[kyttn.livejournal.com]

Thank you *hugs*.

[starmalachite.livejournal.com]

Well of course you're feeling rotten after all that bleeding. Has anyone checked your iron levels lately?

And you are *not* a difficult patient -- your NP clearly can't be bothered to listen. Maybe that's what's stressing you.

I'm sorry, babe.

[kyttn.livejournal.com]

I'm actually on iron infusions because my iron is so low (stored iron 3, serum ferritin 6), but on Tuesday I had an asthma episode after my infusion. I have to go back soon for another blood draw and see if the infusions are doing any good.

Thanks for listening *hugs*

[artbeco.livejournal.com]

Oh my dear have I ever been there. You really need to talk to that Gyn and tell them about the non-stop bleeding and the dangerously low iron levels. They should NOT be giving you that sorry old line about not wanting to see you when you're bleeding and to wait until it stops, since it's not stopping. I got dangerously anemic from constant bleeding like that (for years) and my docs gave me that same stupid line. I put up with it all for far too long (I had fibroids). I ended up with several surgeries (which didn't work) but eventually they did a hysterectomy to deal with it all after I had my boys and wasn't planning to have any more. They all asked me why I waited so long. >:P

Anyway, it was such a relief to have it finally dealt with. And while I've had other serious health issues, it's a relief I can't begin to describe to not be constantly drained and bleeding and dealing with all of it. My energy levels went up and I felt better than I had in years after I recovered from that surgery. And while I don't recommend surgery for everyone, for me it was a Very.Good.Thing.

Hang in there. Try, please try, to really get one of those stupid docs to listen to you.
*massive hugs*

[liraella.livejournal.com]

I second this. I used to work in a medico-legal field, and one of the sad cases I had to adjudicate was a medical misadventure case regarding the non-diagnosis of cervical cancer. The young woman in question bled for over six months because they had originally told her not to come in while she was bleeding, and by the time she was finally seen her cervical cancer was terminal. I'm not saying this to scare you, as I think it's highly unlikely you're in the same situation - just to say that same things are worth overcoming a disinclination to advocate for yourself for. The bleeding is obviously having a horrible impact on your health and you deserve better than that.

[kyttn.livejournal.com]

Thanks for the input! I'm not worried about this being cancer of any kind, even if it is, that wouldn't be that big a deal for me, but I doubt it is anything more serious than fibroids. It has been well over 6 months for me, and is incredibly annoying. It infuriates me to hear about thinks like this, where a young person loses the life she wants to keep because someone doesn't listen.

[kyttn.livejournal.com]

*hugs* Thank you for sharing this - it really is helpful to hear from someone who has been there and to know what I'm going through with the doctors not listening isn't just because it is me and I'm somehow not saying things clearly.

I'm going to start again with the phone calls on Monday and see if I can get someone to pay attention.

[bardling.livejournal.com]

You're definitely not a hypochondriac. And with that long a situation with the steady bleeding, I would at least call your gyn & talk to them, see if they'll see you. "I was supposed to come in when the bleeding stopped, but it hasn't stopped for more than 24h in a month and I'm getting worried about this." Googling a bit shows tt is definitely considered abnormal bleeing at this point, and while hormonal imbalance in approaching menopause is listed as the most frequent cause for this, there are other possible reasons and I sure think it needs checking out.
*hug*
I'm sorry that your NP isn't bothering to listen properly.

[kyttn.livejournal.com]

Thanks *hugs*. I'm going to start with the calls again on Monday. I googled too, and there are so many various possibilities that I really find it frustrating and hard to understand why they aren't listening.

[smcmullan.livejournal.com]

Some doctors need a good solid boot to the head. But sometimes it's just their office staff. When you talk to the doc, be sure to tell them that the office staff has put you off despite your protracted issues and shocking iron levels. There's no excuse for office staff standing in the way when there's a real problem.

[kyttn.livejournal.com]

At the Gyn office, it may be the staff that is being difficult, because there I haven't pushed to talk to one of the medicals. Of course, having been part of a medical office staff, it makes it a little harder for me to snipe at them, because I am well aware of how some of the MDs act if you stop over the guidelines that you've been given to determine whether a call goes to the MD or not. I know, I need to push anyway.

*hugs* to all of you.

[gingicat]

You are not being DIFFICULT, you are DANGEROUSLY ILL.

Call and ask for the DOCTOR to call you back. Tell them you will be going to the emergency room if you do not get a call back within 24 hours. Then do so. If you don't, I will be getting in the car and driving down to you and taking you to the ER, regardless of anything else going on in my life. Got it?

[kyttn.livejournal.com]

*HUGS* You made me laugh. thank you. I'm going to start making the phone calls again on Monday and will talk to the Gyn office. I really like the NP there, and I think she is the most likely to listen to me. This really isn't worth going to the ER about, but I do need to get someone to start paying attention. I've decided that when I call to talk to S after my next infusion (to verify that I haven't had a reaction), if he doesn't pay more attention to what I am saying, I'm going to start looking for a second opinion.

Thanks for caring *hugs* and for the threat!

[gingicat]

Truly, if you really do need help with this, I will do everything in my power to get it to you.

[spiritdancer]

For the gyn office, don't ask about an appointment, say you need to talk to the doctor (or NP, or their nurse). Don't take no for an answer - you don't have to be hysterical about it, but you _can_ be firm (think of how you handle someone who's calling you at the doctor's office). And when they ask why? You've been bleeding continuously for (x time), have been diagnosed with anemia and low iron levels. Actually, that same line might well work to get you in the door for an appointment.

(yeah, I got an answer I wasn't happy with on Thursday at our MD's office - I explained why, they went and checked with the doctor who had us come in right then, and worked us in)

and if tigerbright doesn't get there to haul you off to the gyn/ER, I'm going to head your way, too! :->

[kyttn.livejournal.com]

*sigh* with all these threats of people coming to see me if I don't get my act together, do you have any idea how much more tempting it is to just sit back and wait for them to show up? I could have a party!

I'll be calling on Monday to see if I can get any results. I may end up switching Gyns back to my first one - I really liked her and only left her practice because she stopped obstetrics and as before I had my tubal I wanted to be cared for by an MD who could deal with a possible problem pregnancy. If I can't talk to someone at the current office on Monday, I will call the other office and see about getting back to see her. I always felt more comfortable with her.

[spiritdancer]

Good for you!

And I'd be doing more traveling/visiting but for the whole schleping two kids 3 & under around with me :->

[ccrazy.livejournal.com]

Sounds like a plan. If your current gyn doesn't start taking this seriously and you've got someone else you already know you are comfortable with; call your previous doctor.

The combination of bleeding that doesn't stop and low iron levels is something that needs to be taken very seriously.

*hugs* Hang in there and let us know how things go.