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.