Tuesday, November 11, 2008

My Soapbox

Ok, blog peeps, I'm going to ask for your indulgence as I get up on my soapbox for a moment today.

I know what you're all thinking, "If she's not usually on a soapbox then what the hell has she been standing on?!?!"

My own two feet, would be my answer. :) When I write to you all here everyday, even though there are times when I encourage you to try something new or challenge you to think, I'm not making a declaration as someone who has any degrees or authority. I've never written a book or studied philosophy (although I wish I could... that would be so interesting). I'm just a girl who happens to be stuck in her house and has lived through a few things. My only goal is to tell you about those experiences and hope you glean something of use to you... or at the very least enjoy a well told story.

No, today I want a soap box. And your forgiveness if it's a little longer than usual. I want to make a declarative statement about illness, doctors and our rights as patients. There have been so very many times I wished I didn't feel so alone in the process of being sick, and today I want to tell you that YOU ARE NOT ALONE.

This declaration today comes from reading so many comments and emails from people who sound discarded, defeated and dismissed. You feel safe to say that here, but I think it needs to be said louder. Many of you aren't sick, but this soapbox moment is for you, too... for that someday moment, God forbid, when you find yourself feeling less stellar than you do now.

I have been so fortunate that through most of my illness, before we knew what was wrong, I had my regular doctor, Annie. Dr. Annie Kontos to be exact. I'll use her full name because I have nothing but good things to say for her. She has done everything in her power to help me, and when she was in over her head she sent me to others who had more experience.

That's where things typically would go wrong. But even then I would come back to Annie's ~literally~ open arms and we would start again. I have been to specialists who assumed the digestion problems were because of trouble with a boyfriend. When I informed him I didn't have a boyfriend at the time, he then took that to be the problem. You know, because the doctor man would assume every woman would fall to pieces and develop internal issues over the lack of a man in her life.

**** I'm just taking a moment for all the women  
to be able to laugh publicly at his idiocy ****

Moving on...

I have been in a room with a doctor who looked at my chart, made dictation, made decisions and dismissed me without examining me or glancing in my direction. At one point I had a question right after my appointment and was standing with the nurse in the hallway immediately after leaving his room. He came out and we asked him the question ... and he had no idea who I was. I had left him not more than 30 seconds earlier. He literally hadn't looked at my face.

I went to a rheumatologist who examined me, looked at my chart and said absolutely he knew what was wrong with me and would help me... only to return on my next appointment to have him tell me he changed his mind and didn't know what was wrong with me again. Talk about emotional whiplash.

I am very accustomed to the ups and downs... I've been dealing with all of this to varying degrees for almost 15 years now, but even the strongest of us have our moments. I have been in and out of the hospital many times and am quite independent about it. Back when I was able to drive I would take my own car to the hospital, check myself in and handle it on my own. I always had friends stopping in to see me but never felt nervous about the process of being there and dealing with whatever arose. Most of that is because I have always found nurses to be the most compassionate souls on the planet.

A few years ago, however, I had an experience where I drove myself to the hospital and checked in, and was put in my room. I was in an extreme amount of pain and had pneumonia. I sat in the room and waited. And waited. I called the nurses' desk and would either get no answer or a quick... we'll get to you. After two hours of no one in my room, no IV put in, no pain meds given... I was ready to lose my mind. After 3 1/2 hours I was doubled in pain, couldn't straighten up and crying my eyes out. And I don't cry easily.

I called my friend Kelly and all I could get out was that I needed her help, and she got to the room and raised holy hell. Or as my friend Kathy would say, "She went all Shirley MacLaine on 'em." But even she couldn't get anyone to get things done... they were busy with paperwork for other patients and would get to me when they could. She finally called the after hours number for my doctor, who called the hospital and nearly 5 hours after I checked in they came in with drugs. Kelly later saw that nurse in the hallway laughing outside my door.

In that same hospital stay they messed up my medications and gave me 4 times the normal dose of one of my meds two days in a row, even after I questioned them on the dosage. Let me say this: this was a one time event for me. I spoke to the hospital administration and the nurse who treated me was not a regular there; she was a temporary floating nurse who was more used to administration than care. And she's the only nurse I've EVER had trouble with.

But my reason for telling you this story is that after 15 years of managing my disease on my own, I will never go into a hospital again without someone with me. Not because problems are inevitable, but because they happen. And we all have a right to a voice, and to have someone who is louder than we are when we are sick.

There was a time when I thought I would never find a specialist who could help me. I have, thanks to Dr. Kontos. She never let me give up or stop looking... because I would have. I now have doctors who know what they're doing, understand my disease, and want to keep looking for solutions. I know there are many of you out there who haven't found that person yet. Keep looking. Don't think you're alone or that you don't have the right to ask questions and, if necessary, fire your doctor and look to another one.

I know. I've been there. I have been ready to give up. But I am so grateful I kept going until I found the ones who were worth the wait. I'm also grateful for home nursing so I can be at home instead of the hospital during the rough times. But mostly, I'm grateful I kept trying. You should too. I get that it's hard. I get that it's discouraging. I get it.

You are not alone.


  1. Amen. And thank you. I'm not gonna say much more, because you've had a soapbox moment and those words should sink in for a while.

  2. This post couldn´t have come at a better time, I was just talking about it yesterday. For years I´ve been wanting to be independent, going to appointments alone because I thought bringing someone would come across as weak. Lately I always bring someome with me. When I have a doctors appointment I´m nervous, in pain and therefore more vulnerable than normal. So... it´s completely normal to bring someone who can listen, ask questions when I´m confused and just support me.

    I´m going to a new rheumatologist in a couple of weeks and I am a little nervous about it...
    I´ve had specialists say very disturbing things like: "just exercise more, then your pain will go away. bye." (I've had severe chronic pain for 12 years now, all day every day and all exercise besides walking/swimming give me injuries that can last up to a few years).
    There have been times that during an appointment a doctor would be very rude, and my head was spinning, and when I was finally outside I came up with things I could have said to him. I should have said this! And that! But it's hard to be assertive sometimes.
    When doctors don't know what is wrong, they can get irritated that they don't know the solution and get snippy with you. This has made me very defensive when I'm around doctors and I don't want to be that way... And I also don't want to get bitter. I want to feel confident when I sit there, and not feel like I have to prove that something is wrong with me.

    Anyway, this new rheumatologist is a christian (he's a friend of a friend), so he HAS to be respectful and nice, right ;-)
    I'll keep looking for that one person, who may not totally understand my disease, but is willing to keep looking for solutions.

    I realllly don't like support groups, so I don't talk about these experiences a lot, but I needed to hear that I'm not alone.
    (Longest comment ever but I feel passionate about this)

  3. Sara - as always you are "right on the mark"! Always, Always, Always take someone with you. If for no other reason, that to make sure that you understand what has actually been said to you.

    Take pen and paper with you, and take notes WHILE the doctor is in the room. If you don't understand something - Speak Up And Ask - if your doctor can't or won't take the time to answer your questions, walk out the door and then send him or her, a bill for wasting your time. (You won't ever get a check in the mail, but it will make you feel better to send it!)

    As far a support groups go - I don't use them. Not that they don't serve a purpose, but that they don't serve a purpose for me. We each have our own individual needs, and what work's for some, doesn't work for others.

    Sara - you go girl. Keep speaking your mind and your heart & we will listen!

  4. I almost can't even leave a comment, because you are having a MOMENT here that just stands up and demands attention all on its own.

    Its extremely valuable to talk about the "business" of managing a disease because for some it really is a full time job, minus all the perks. Thanks for illuminating how to do it with grace.

  5. Sweetie, this is a necessary soapbox! I started to put a toe on your soapbox and get up there with you and tell a story, but I won't, I'll just say Mike was in the hospital and if I hadn't been there round the clock they would have killed him. I'm not exagerating one bit!!!
    You are so right. So wish we could get a Dr. or two to read this!

  6. Ummm...I'm going to take this as prodding from the Holy Spirit to call that doctor everyone says can help. After 14 years I've almost given up. One friend wants me to go to Mayo Clinic. How in the world does that happen without a referral?

    Ok...thanks for the soapbox. I hear you. I'll call.

  7. You can purchase an inexpensive small digital recorder and take it in with you. Up to you whether you tell the Doc it's in your pocket. It makes a big difference when you can turn it on and listen to it--or let a family member or friend listen.

  8. Thanks Sara. Your post is very inspiring. But how, help me anwer this question, how does a person keep going, keep searching when they have no health insurance and despite letters from multiple doctors and plenty of evidence they have been denied access to Medicare/caid? I was like you..great job et al. But my resources are depleted and there's nowhere left to turn for help. I'm dying and there's nothing I can do and no one willing to help.

    Thanks for your words that echo the experiences of many of us,

  9. @anita: :)

    @abw: You're welcome. I'm glad that next step has come for you and hope it goes well!

    @anna g: read this one... http://gitzengirl.blogspot.com/2008/07/open-doors.html
    After all these years I still get knots in my stomach too :) Let me know how it goes.

    @neas: you're right, everyone is different with what they need. I finally started writing down questions I had and taking it with me so I wouldn't chicken out or forget in the moment. Dr.s can be very intimidating.

    @vicky: you are so right... well, you're always right, but I mean about the full time job thing. It makes your head swim sometimes... I end up being more informed than my dr. most of the time, but you have to look out for yourself.

    @robin: you can share your stories here anytime... borrow my soap box! :) Glad Mike's ok... I might need a handy man in the future :)

    @michelle: will you email me (it's on the side bar)... I can't find your email address. We'll chat.

    @sherri: good idea. There have been times my mom has gone with me, we leave the room and heard 2 totally different things!

    @josiej: I am so sorry. And I wish I was smart enough to have the answers to the health care issue. I know how intensely lucky I was to be approved for disability right away, but many who need it aren't. I guess the first thing I would think of is calling your congressmen and senators. Also, there are disability lawyers out there... I have no idea the cost but it's worth checking. Anyone else have ideas for Josie???

  10. Some really important things you're saying here Sara, as usual. You are so well spoken, and no one can address these things with more credibility than you can. I have a good friend who is going through the worst medical ordeal I've ever witnessed right now, wish she could read this.

  11. Well said! When I cried to my therapist about feeling so alone she told me I needed to find an ally. I realized that I was too afraid to seek one out. Navigating the medical world is intimidating. I realize and agree that I really do need one though so I just have to dig deep for some strength and dial the phone. Just one good doctor would be great!

    Thank you for putting this out there- as always you have an amazing ability to articulate what you and other's are going through.

  12. Sara - your suggestion for josie, to contact her local congressman(or woman)or senator, is an excellent idea!

    We dealt with a "catch 22" situation, when my son and his fiance wanted to get married (she's from Korea - long story). We made call after call, to one place after another. Kept getting the "run around" (Can you imagine -getting the run around from government agencies?:). Any-hoo, we finally called our local congressman. The result - one hour later we had the necessary paper work faxed to us. Your local represenatives can be a great asset!

  13. @liz: I'm sorry about your friend... I hope things turn out ok.

    @melissa: she was right. A good advocate can be a doctor or a family member or a friend... just someone willing to go through it with you. Sometimes the hardest part is asking.

    @neas: that's good to know. I was just kind of grasping at straws...

  14. Thanks Sara. I appreciate the sentiment. I have a lawyer. Have since the begining. I have documents from some of the finest hospitals across the cntry. But to no avail. The goverment would like more diagnostic test; which I can't afford to get with no ins. And in the meantime my meds are $1200 a month for just the bare minimum. My "Rileys" are keeping me going right now. Who would care for them when I'm gone? :)

    I just read that for each lawyer who handles SSDI at least one patient dies each month while waiting for answers from the gov. That's a couple thousand every month. And our government, honestly, just doesn't care.

  15. @Josie: I am so frustrated for you; there just has to be a better way to help people... and I have a feeling it's going to keep getting more difficult with the economy as it is and insurance companies / doctors trying to recoup more money. Breaks my heart for you.

    All I can say is keep holding on. I get it about the pups... I would not be as sane as I am without mine. And know I'll keep you in my prayers. If you need vent, use my email. I'll listen.

  16. Dear Sara, you do realize that God is using you to minister to so many people, don't you? I don't have any major health issues (thank the Lord!), but I read your blog and draw an abundance of encouragement for the day to day challenges that any of us face. You are joy personified and a blessing to all who come here. I know full well that those who do face illness reap a great deal of strength from your words. God bless you, sweetie!

  17. Hi Gitz,

    I found you from Angie's blog. I must say that I'm so sorry for all that you've had to endure... in and out of the hospital. I think taking someone to the hospital with you is a brilliant idea. When you're in pain, you need a voice...someone who can think clearly and be assertive for your care. Doctors can be very obtuse and need to be cornered so they can hear AND listen to you. It is your right as a patient. Doctors and nurses are there in the hospital for YOU. And it's ok to remind them of that fact. Especially when you're in pain...it's absolutely appalling to me that you had to wait for so long to be medicated. I'm sorry.

    I guess I just want to say keep on keeping on...you're insight is refreshing!


  18. Sara,
    I've been browsing your blog this evening and have to echo your sentiments about Annie and how wonderful she is. We take care of a lot of her patients and they just love her. I have not personally met her, but you can always tell by the patient how good their doctor is (35 years of experience).

    And you're right - the last place you want to be alone in is a hospital. I'm so saddened by how the government and insurance companies have forced us to lower our standards at the bedside while raising the bar in the patient's chart. It's a horrible conundrum that I don't see getting better soon. Every patient needs a bedside advocate who will kick and scream when need be.

    I'm so interested in your story. And I am so delighted we've met in such a round-about way!

    God's peace to you this evening,