Tuesday, December 8, 2015


I finally found doctors willing to help me.  Today is the first day in a long time that I feel more like a normal person.  It's wonderful.

I have given up on Columbia St Mary's hospital system here in Milwaukee, and am switching our whole family's medical care to Froedtert.  I have always liked our primary doctor at CSM, and we've gone to her since before we had children, but she's moving her practice to suburbs farther north in the new year anyway.  Keeping a relationship with her might have been our only incentive to stay, but with that ending I had no reservations about starting over somewhere else.

The pain in my breast that began back in July started getting so bad over Thanksgiving weekend that it was destroying my ability to function.  I tried swimming without using my right arm for a couple of days, but finally had to admit swimming was out.  I had to set aside a bushing job at work because I couldn't brace the instrument against my body in order to get at it properly with my tools.  (Thankfully that job is on a long timeline, so it will still get done.)  I couldn't walk at a normal speed.  I couldn't lift many things.  I was constantly elbowing away my children when they'd try to hug me.  Sleeping was hard because I'd have to find one position and not deviate from it all night or suffer excruciating pain.

I spent all of last Monday trying to get any doctor at CSM to listen to me.  The nurse at the breast center that did the biopsies and the ultrasounds and the mammograms were sympathetic, but said that since I did not have cancer there was nothing more they could do for me.  They couldn't even prescribe anything for the pain.

My primary was impossible to get in touch with and has been all year.  I spent over two hours on hold before I eventually left a message that was not returned.  The nurse at the breast clinic managed to reach her and convinced her to prescribe some more anti-fungal pills (since they have been the only thing correlated with any improvement).

When that clinic does return messages they are usually confusing.  A couple of weeks ago they left me a message with the name and number of a specialist to try since my condition is beyond the scope of my primary.  I made the appointment, then when that person apparently went looking for records I got another message saying that my doctor "had never heard of this specialist" and I was supposed to call a different one.  What kind of message is that?  When I did some digging (after many hours on hold) someone figured out that the doctor had changed her mind about which specialist I should see, but that's a completely different message.  I didn't know what to trust, but I cancelled the appointment and set one up with the new specialist.

The new specialist wasn't scheduled to see me for another week.  I couldn't wait another week.  I had an abscess that was growing rapidly and making life impossible.  But when I called they said there was nothing they could do.  I'd have to wait.

Now, let me be clear, all of the nurses and doctors I worked with at CSM when I could actually see them in person were great.  Everyone was kind, everyone was caring, and I honestly believe they were doing their best.  But the system they work in is broken and preventing them from being able to do their jobs.  It should not take me a week of phone calls to schedule a followup ultrasound.  If I'm in a panic I should be able to get a message to my doctor.  If I'm in pain someone should help.

The crazist part of all of this is it that it's a paid service.  I'm not demanding people make time for me out of the goodness of their hearts--it's supposed to be what they do.  But somehow medical services don't work like any other paid service.  The billing is Kafkaesque.  For some reason you are still expected to pay for services that aren't even delivered sometimes.  My brother recently described a horrible situation in an emergency room in New York where he felt unsafe and was never even seen and he still received a bill for over $1000.  (He is contesting it, but wonders how difficult that will get.)  My mother was forced to wait for weeks for a shot to relieve the pain in her knee which should have only taken about 15 minutes to perform, but instead they let her suffer and she had to cut her visit over Thanksgiving short because she was so uncomfortable.  And don't get me started on the number of ways things were mishandled at the end of my dad's life.

So it's not just CSM, it's a problem many places.  I think those hospitals rely on the fact that once people are finally feeling better enough to leave, they want to leave the entire unpleasant experience behind them and don't have the energy to complain.  I plan to complain.  Because it doesn't have to be that way.  It shouldn't be that way.

Which brings me to Froedtert.  A friend suggested when I told him of my frustration with my ongoing condition that I should try them.  They tend to be on the cutting edge since they are also a medical college, and his experience there was excellent.  I asked around to other people, and everyone seemed to have a good opinion of Froedtert.  So my husband and I did a little online research, picked a new primary, and the next day I called.

I got more response, service, and help in two days than I have from CSM in months.  They got me in that day to see a doctor in the practice whom I liked very much.  He really listened to me.  And this may sound odd, but one of the things I appreciated was instead of moving me to the exam table and having me put on a gown, he asked if I just wanted to stay where I was and show him the problem.  It felt more humane somehow, just unbuttoning my shirt a little and letting him do his brief exam right there in the same chairs where we were just talking.  I've never liked the pretense of the flimsy gown which you just have to open anyway, and the power imbalance of being undressed and trying to talk to someone can be unnerving.  Certainly there are times it's necessary, but this wasn't one of them, and it made an uncomfortable situation better for me.  He was also the first person to say what I've been thinking, which was that the small amount success of the anti-fungal medication was probably coincidental, because it had anti-inflammatory properties as well.  He promised to consult a specialist and get back to me in the morning.

He called me himself at 7:30am the next day (saying I seemed like the type to be up early and he didn't think I'd mind), and told me to ask for a second opinion at their breast clinic.  I called and did a little phone tag with someone there (but never was I on hold, and never did anyone take more than a few minutes to get back to me).  A helpful coordinator listened to my whole story, told me to give her 48 hours to collect all the test results and scans from the other hospitals (to make sure they wouldn't have to run more tests).  When I talked to her again she had me set up with a specialist in a couple of weeks.

Then my condition got rapidly worse, and I called her again yesterday explaining either I had to see someone that day, or I had to go to the emergency room.  (I have been trying very hard to avoid emergency and urgent care facilities, because granulomatous mastitis is rare and hard enough for specialists to deal with, and I didn't want someone accidentally making things worse.)  She got me in before the morning was up.

A nurse examined the abscess.  The doctor I was scheduled to see in a couple of weeks was able to find a moment to come talk to me and explain our plan of action.  They drained the abscess while I squeezed the hell out of another nurse's hand and screamed and cried.  The pain was awful.

But you know what?  Now the pain is gone.  There's a little twinge once in a while under the bandage like you would expect after being punctured in a tender spot with a big needle, but that's it.  I can move my arm and walk and hug my kids.  I could roll over in bed last night without crying.  I am not in pain.  It has been so long since I have not been in pain it's like being released from some sort of prison.

Nobody at Froedtert could understand why nobody where I've been would see me.  Nobody could understand why I was not being given better pain management.  They sent me home with some strong pain killers just in case, but so far I haven't needed them.  I am glad to have them in case things take another turn and I need to sleep in the face of pain, but so far so good.

I am on antibiotics while my small wound is healing.  I'm on steroids to help reduce the lump, which finally feels like it's getting smaller.  There will be side effects from the steroids, including weight gain, but I will take fat pants over pain.  Apparently my condition is something that should resolve itself over about a year, but in the meantime my new doctor can help manage it so that we can keep the pain at a minimum and that things (like the recent abscess) don't get out of control.

How amazing to get help.  I am so grateful.  That should not be unusual, but since it is, I am glad to have found a place I feel I can reliably turn to when in need.

The thing is, at CSM, I have mostly done routine things.  I don't drink or smoke and am generally healthy.  My kids have had ear infections and respiratory problems, but nothing too scary.  This has been my first real crisis, and I learned I could not count on that system in a crisis.  That's a system I don't need.

The new walk-in clinic at Froedtert even helped Quinn this week, who needed drops for pinkeye, but was also given some medication to help his sinuses.  We've been trying for years to get some help with Quinn's weird snuffles and coughs to no avail, and the nurse at the walk-in clinic focused in on that right away.  He's sounding better.

No place is perfect--I'm certainly not perfect.  But I'm nothing but impressed so far with the care I've received at Froedtert.  What a relief to finally get help and feel like there is someplace I can trust with my family's health in a better way.

Now, back to work.  (Finally.)


  1. So glad that you are finally getting the relief you have been looking for. And that you have found a medical facility that you feel good about. Love to all.

    1. It was a terrible feeling to be scared for so many days, wondering what to do if the abscess burst and not feeling like there was anywhere I could go. Then I think about how many people still don't have health insurance and remember I am at least one of the lucky ones. It may have taken me a while to figure out where to get help, but I'm mostly fortunate that once I did I could take advantage of it. That's not lost on me. We lived without health insurance for years and that was a scary gamble.

  2. Such good news that you are finally feeling better. It must have been a nightmare being in such pain and getting no relief. I mean ... what does that mean, they can't help you if it is not breast cancer? What kind of system is that? It's a pitty people do not complain. They can't improve if they don't get feedback on their weaknesses. I wish you good luck if you go down that road.
    Well, I have to say we have a fair share of horror stories about medical services here (Slovenia), so I guess it is no deifferent than anywhere else. But my family and I have doctors who listen and are really helpful,and I am grateful for that.

    1. There was one point in all this where I decided a cancer diagnosis might have been easier because then people would be doing something. With cancer there is plan and people mobilize. But my thing is just weird so nobody knew what to do and they ended up not doing anything. My new doctor said what I have is rare, but she has two other patients with it that she's also treating, and she even has a plan B lined up if plan A doesn't do the trick. But no, I really didn't understand a breast clinic that only knows about cancer and that can't prescribe anything.

      Actually, that same clinic screwed up at one point and told me I had an appointment at 7am, but none of the doctors got there until 8, so I had this long unnecessary wait. When I told the nurse about it (and the long times on hold when I called scheduling) her eyes got wide and she handed me a clipboard with a comment sheet on it. She told me those problems frustrate them, too, but nobody listens to her. She said, "Maybe if more patients complained..."

  3. So glad you got some relief!!! That first clinic sounds just crazy... I'm sure the staff are very frustrated by it too!! I would think they will have a really hard time keeping that practice open with that kind of customer service... Because no doubt about it, the medical field is most definitely a customer service field too! I'm so glad you found a better option and are getting some relief!!

    1. I'm pretty sure that's the whole reason our primary is leaving. While I was in Michigan doing home hospice with my dad I wasted hours on the phone trying to get my scans and records from home to show the doctor in Detroit, and no one could do it. I tried to get a message to my primary to see if she could help, because I was concerned if they did send records they would send them to my home in Milwaukee, and she was told I was trying to get a diagnosis over the phone which she couldn't do. She was so angry with the message system when I returned home and explained what my call was really about. It's a mess. But after the holidays I am going to sit down and figure out all the places I should send letters to and explain what they are doing wrong. They need to know. And they need to fix it. Because if I've had this much trouble and I have the advantage of all kinds of privilege in this society, what does someone with fewer resources do? I can't imagine.