Don’t let the past steal your present. ~Cherralea Morgen
There are times when I feel like I’m bombarded with the past and it bogs me down as I’m trying to deal with the present. It becomes overwhelming because it’s like having too much going on at one time. I don’t doubt my ability to deal with everything but right now I’m stuck.
Last year at this time I was dealing with a total medical disaster. In fact a year ago at this time I was experiencing one of the worst moments in my life. Up until I was diagnosed with cancer again I was experiencing flashbacks. When I received my diagnosis the flashbacks subsided but they’ve resurfaced and I’m dealing with the past and the present at the same time.
I had been in the hospital for three months and couldn’t walk after five surgeries. My memory was just starting to return after I was in coma for three weeks and after having amnesia for another three weeks. Even worse I was left with a fistula and the uncertainty of if or when it could be closed.
The nurses at the hospital treated me horribly because I had a fistula. It was like I had some horrible disease they didn’t want to come near. I had no idea how to take care of it and the hospital only had one ostomy nurse. If the bag started to leak in the middle of the night the nurses wouldn’t do anything to help me other than give me a towel and say “tough luck”. I can’t tell you how humiliating it was to lay in a hospital bed with a towel for 12 hours collecting my bowels until the ostomy nurse would come in.
Then the time came for me to go to rehabilitation so that I could rebuild my strength and walk again. I was able to walk from my bed to the bathroom with assistance but any further then I would become very dizzy and weak. The hospital coordinator and my husband found a rehab close to my home but they didn’t check it out closely enough because once my husband saw where I was sent he was heart broken.
There was a nursing home where people who are basically vegetables going to die that wanted to start a rehab and lucky me…I was there second rehab patient. I was also the youngest person there. Everyone else was at least 80 years old, had Alzheimer’s or had a stroke. I was amongst the living dead. The nurses treated everyone that way too, including me except I was 40 and very much alive. I felt like I was trapped in hell.
Rehab was a joke. It consisted of exercising 30 minutes a day. The other 23 1/2 hours were spent in bed. I could have spent that time at home. There was supposed to be an ostomy nurse available to show me how to take care of my fistula. She never showed up and the administrative staff showed up in my room to lecture me on “being and adult”, “growing up” and “taking care of myself”. The biggest problem I had was that the ostomy nurse at the hospital never showed me what to do.
The administrative staff didn’t listen to anything I had to say so I had to teach myself what to do. That resulted in a total disaster which landed me in the hospital a week after discharge from the rehab. It also resulted in more mistreatment from the nursing staff at the hospital because they didn’t want to deal with a fistula patient.
It was devastating to be treated like I was some kind of diseased animal. Even worse it was devastating to be treated without respect.
At first I made excuses for the treatment I received until I had my sixth surgery to reverse the fistula. The nursing staff, for the most part treated me very well. There was one nurse’s aide who was ignorant and mean but I reported her. She actually cursed at me so she deserved to get reported. Then I realized there was no excuse to be mistreated. No one deserves that under any medical condition.
Here I am now in much worse condition in terms of cancer. I’ve told family and friends I will not have surgery again. So, it’s a good thing the doctors have told me my tumors are inoperable. I could not risk going through what I went through again. I can’t imagine living with a fistula or even a colostomy. I realize other people do it but I did it for a short time and it was like living in HELL.
So, I feel as if I’m trying to move past what happened last year and deal with the present situation at the same time. I can’t ignore the past which is why I’m acknowledging it. It doesn’t deserve the power it’s trying to gain. I need to be present to deal with the present.
{ 26 comments… read them below or add one }
Judy C 05.28.08 at 7:59 am
I cannot imagine being in a nursing home for rehab and being 40 - it is amazing you emerged with any sense of humor or self. There isn’t much to say except that I keep you in my prayers every day.
Amy 05.28.08 at 8:18 am
Holy moly, did you go through it. I can’t imagine what it must have been like.
I wish I had some words of wisdom. I’m just too outraged that you were treated that way to come up with anything.
Hang in there.
Amy @ http://prettybabies.blogspot.com
radioactivegirltori 05.28.08 at 8:27 am
“I can’t ignore the past which is why I’m acknowledging it.”
This is the most powerful statement. I love that you wrote that!
I can’t believe what you have been through (I mean I believe it, obviously, but I can’t believe you had to go through it). You are one strong woman, that is for sure. I am really sorry you were treated so badly.
HeatherK 05.28.08 at 8:45 am
I am dumbstruck and so very sad that you were so badly mistreated. Thinking of you…
HeatherKs last blog post..Wordless Wednesday: 7 months and change
she 05.28.08 at 8:49 am
i didn’t have ptsd from cancer, but i did have it for many years from another trauma. here are some tips that i’ve found helpful to stay in the present when i feel myself zoning out.
http://www.taking-back-control.com/?page_id=14
shes last blog post..Ask She Wednesdays #5!
she 05.28.08 at 8:58 am
here are things i use to keep myself in the present.
http://www.taking-back-control.com/?page_id=14
shes last blog post..Ask She Wednesdays #5!
Mattie 05.28.08 at 9:09 am
Unfortunately, in most hospital/medical situations the patient has to be their own advocate.
Hopefully, you will never have to be hospitalized again. But, just in case, right now take the time to find out the name and phone number of the hospital administrator, the Patient Liaison or Ombudsman, and the person who is in charge of the nursing staff for the hospital you would most likely be admitted to should a problem arise.
It probably wouldn’t hurt to get the name and phone number of the person who is your case manager from your insurance company as well.
Give these to your hubby. Tell him to keep this list of phone numbers in his wallet.
For heaven’s sake, what the did (and didn’t) do is just deplorable.
But, taking back your power now is exactly what you need.
Matties last blog post..Almost Ready, I Swear …
MrsRobbieD 05.28.08 at 9:11 am
Is there no way to sue the places where you were mistreated and not shown how to care for yourself? You’d think they’d want to see a person better.
My BFF just graduated RN school and I could never see her treating a person that way. They were taught to treat a patient as if that person was THEIR family not just a chart.
MrsRobbieDs last blog post..Bathrooms and Turtles? Who knew…
catnip 05.28.08 at 9:40 am
I’m so sorry you had to go through that. I can’t even imagine. I understand you not wanted to deal with surgery and its aftermath again. Thinking good thoughts for you today.
catnips last blog post..ChapterBytes launch!
Christine 05.28.08 at 11:25 am
First of all, I am so disgusted to hear that you were treated so poorly. And, who had the bad judgement to even recommend a nursing home rehab for you, with Magee and Ross and other wonderful rehab centers in our area. As a PT, (yes, I am a physical therapist), I know first hand, that the nursing home rehabs, can be a bit less intensive than a traditional rehab setting. (and that is being generous).
I cannot believe that nurses would treat anyone on their watch so poorly, either.
Thank you for sharing, and I am praying that you have better treatment from those in the medical profession from now on.
I treat each patient with respect, it is part of the health care code…
Christines last blog post..IEP went well!
Karl 05.28.08 at 12:29 pm
Geez, that sucks, how you were treated. Have the doctors figured out yet just what type of cancer you have?
Karls last blog post..Let’s Twist Again…
Erin 05.28.08 at 12:56 pm
I am so sorry to hear about your ordeal. I’ll keep you in my prayers, and hope that whatever happens, you never have to go through something like you did last summer again.
Colin Brooks 05.28.08 at 5:32 pm
I have no words! I can’t believe they would treat anyone like that. I’m literally speechless. You are such a strong person to have made it through something like that. I don’t know what I would have done if I was in your shoes. I admire you so much! You inspire me!
Colin Brookss last blog post..1 down 3 to go
delmer 05.28.08 at 5:46 pm
It took a lot of strength to go through all that. A lot to share the experience with your readers too.
delmers last blog post..Aches and Pains
Tug 05.28.08 at 8:09 pm
I found in helping with Brady that you can truly get insanely bad medical care…and he, too, at 25 years old, ended up in an old folk’s home for rehab. ugh. I’m glad to see you taking the power back Lisa - our past molds us into our present souls, and how we deal with it makes such a HUGE difference - you taking control is just awesome to hear!
((many hugs)), good healing thoughts, and prayers.
Tugs last blog post..Fun was had by all
annie 05.28.08 at 8:48 pm
Did I mention last time in addition to my dad and grandfathers being doctors, my mom was a nurse? And her sister and her best friend were, too. All people who went into the profession because the CARED about PEOPLE.
I don’t get why some of these bozo people are in the profession today, with stories like you just told. I get that they’re overworked and stuff, but that just goes against the word “Nurse”. How awful for you to experience this! It really pisses me off.
annies last blog post..I ‘m Putting My Foot Down
Black Belt Mama 05.28.08 at 9:20 pm
I’m betting you were at the same hospital where I had my surgery and I wasn’t happy with the nurses at ALL. I can’t even imagine.
Black Belt Mamas last blog post..But Wait, There’s More
Lisa 05.28.08 at 10:51 pm
Judy C, If you don’t maintain a sense of humor then what else is there? As far as a sense of self? That was temporarily lost but thank GOD I found it again, quickly.
Thank you for keeping me in your prayers.
Amy, I used to be angry but I’m passed that. I’m not really sure what the issue is or why it’s bothering me but like I said, I needed to air it out.
No need to feel that words of wisdom are necessary. You support is better than anything else
Radioactivegirltori, It was a huge relief to write about it, hit “Publish”, read it and then walk away. That was my way of “acknowledging” it.
I believe that every experience we go through makes us stronger and just prepares us for the next experience.
HeatherK, No need to be sad…it’s in the past. I just had to talk about the fact that I’m battling with demons from last year while I’m fighting off the crap flying at me at the present moment. At moments it can be dizzying.
Mattie, I’ve been dealing with the medical/hospital system since my daughter’s premature birth in 1997 so I’m well educated in patient advocation and navigating the medical system.
I think I’m even better at navigating the insurance system. Years working in the health insurance industry also help as well.
At the time everything was happening I was in no shape to advocate for myself however once I was able I reported EVERYTHING, I mean EVERYTHING to hospital administrators.
My husband has a list of everything he needs including Power of Attorney papers. We learned the hard way after last year. That’s what the “Idiot List” was all about. Not only does he have a paper copy but he has a back up on a CD.
Experience has taught us a lot, trust me.
MrsRobbieD, I’ve already presented the case to a malpractice attorney and due to the complexity of the case no one is willing to take it. Not only that my county is very hard to try a malpractice case in.
It’s no longer worth the time and energy.
Catnip, Thank you so much for the good vibes.
Christine, I live in a county that’s a little further outside of Philadelphia so I was kind of stuck with a rehab that was affiliated with my local hospital. And calling it a rehab is really a crime. This wasn’t even intensive. It wasn’t even worth the money that the insurance company paid them.
It’s good to know that there are nurses who really do care.
Karl, No, the doctors STILL DO NOT know what kind of cancer I have. The deadline is FRIDAY or they are FIRED. I was diagnosed on March 31st…almost two months ago and treatment still hasn’t started. I have an aggressive cancer so GOD only knows what is happening to my body.
I’m so pissed, you have no idea.
Colin, It didn’t kill me so maybe that’s why I’m stronger…you know that adage…that which doesn’t kill you only makes you stronger? I wouldn’t send a dog I didn’t like to that place.
Remember, I’m just me…just getting by. I don’t know that I’m any different than anyone else.
Delmer, It was hard but I felt better after I did it. I hope that it gives others the courage to do the same because by acknowledging something like this it diminishes the amount of power it holds over you.
Tug, I can’t imagine how he felt at age 25. It’s horrible that the trend of nursing homes being used for rehab is growing. Anything for a buck.
Taking control is huge for me because a few months ago I was paralyzed by what happened…or so I thought I was.
Never doubt the amount of strength you have under the most adverse situations.
annie, I’m not sure why some people become nurses when it’s blatantly obvious that they don’t belong in the field. They’ve either become so callous and heartless to the human condition or they are just in it for the money. I’m not sure.
BBM, If you were in the new Catholic hospital that moved out of the city then it’s the same hospital. I’m hoping that’s the same hospital because I’m going to the “other” hospital for cancer care. I would hate to know that the hospital on the “West” side of town is just as bad.
Tug 05.28.08 at 10:55 pm
And please don’t YOU forget all the strong vibes we’re all sending your way - you’ve got an awesomeHUGE support system to lean on - any time!
Tugs last blog post..Fun was had by all
Summer 05.29.08 at 12:12 am
My son just graduated from nursing school 2 weeks ago and will be an RN after passing the licensing test. I had him read your post and he was just appalled that you were treated that way. How awful. You’e a strong woman
Summers last blog post..What period are we in?
PandoraWilde 05.29.08 at 12:45 am
I cannot believe how pissed off I can be on behalf of someone I’ve never met. Yet this post has my blood set to boil.
You see, I worked in a nursing home for 8 years, and if ANYONE, from Dietary Aide to Head Administrator had ever done the things you describe? Not only would they be jobless but also license-less, unemployment-less, and blackballed as far as the tongue can reach.
And none of this “Oh, that’s not my job–you have to wait for the Ostomy nurse” bullshit–every nurse assigned to you knows that if care is needed, it’s given RIGHT AWAY no matter what kind it is. “Wait for the ‘blank’ nurse” is the medical equivalent of “That’s not my table” and it’s not only unfriendly but it’s likely to not be an acceptable standard of care and should be followed with wicked-assed fines. Once you were able to handle it, you’d have been taught, but not once would you be told, “Suck it up, Princess, the nurse isn’t here.”
Fucking stupid motherfuckers ought to be reported to the fucking state!
As for fistulas being the Antichrist, I’d rather do care for half a dozen of them daily than EVER have to reduce a prolapsed uterus ONCE. It looks a lot like your vagina has opened its drag chute–SOOO weird. But weird or not, the same thing goes–no waiting for the “vagina nurse” to come down and fix it–I would call the charge nurse and within minutes she’s on it.
But that’s way too much babbling–my point is that even though suing isn’t being encouraged, reporting that shithole to the state might lay a stronger base for trying that route again. Besides, those bitches have it coming too.
PandoraWildes last blog post..I need to start a movie fund
Lisa 05.29.08 at 6:55 am
Tug, If it weren’t for the support of my wonderful and loving family, my fabulous friends and this AMAZING online community then I would be a complete mess. I know that I probably don’t give my support system enough credit but there is absolutely NO WAY I could do this with out all of you.
Summer, Congratulations to your son for graduating. I realize that nursing is a demanding profession that certainly isn’t for the faint of heart but perhaps he will keep my story tucked in the back of he’ll always remember to treat every patient with the respect and dignity they deserve.
PandoraWilde, First of all, it’s good to see you…where have you been?
As I said before I had a lot of anger at first but now it’s just flashbacks of a time that was really hard to get through. And the flashbacks happen at some really weird times too.
My husband and did report them after I was discharged. He didn’t realize the extent of how bad things were until I was home. I had to “play” the game so that they would release me because it was like being in jail…that’s another story in itself.
Lisas last blog post..Getting Through the Past To Be Present
Tug 05.29.08 at 8:50 am
((hugs)) We’re not here for credit - we’re just here.
Tugs last blog post..Fun was had by all
3rdtimesacharm (3T) 05.29.08 at 8:05 pm
I didn’t comment on this post yesterday Lisa, because I couldn’t wrap my mind around such horrendous lack of compassion and professionalism, let alone that nightmare you lived, my friend.
Never have I heard of this severe a case.
My husband went through a nightmare of poor care, before I called in the hospitalist doctor, and was on those nurses like white on rice! They hated me the whole week that Paul was in their hospital. The doctor who butchered him, cutting his femoral artery was told what I said about his lack of ethics. (Lying about blood loss, how long he was under anesthesia, and misleading us regarding his credentials to do robotic prostate removal surgery. As well as lying to us about how long he would be in surgery and booking the surgery suite for twice the amount of time, than he told us. His own surgical nurse came in and told us that he had only done one prior to Paul, and for me not to expect him out for at least 8 hrs. It was actually 10 due to the nicked femoral artery that rendered him anemic and in need of a blood transfusion.)
I have a few different friends who have similar stories of recent botched surgery and neglect in care. It’s becoming more and more prevalent to hear of these stories. I admit not quite being over my anger at the surgeon or the nurses who did their best to cover for him.
I’m sorry I went off on a tangent. I understand what you’re saying about needing to acknowledge what you went through. But you m’lady, are a walking case of Grace. I don’t know how you told this without the rage I’m feeling, just reading it. Lisa, I just want to wrap my arms around you and hug you!
And if I’m saying the wrong things, I ask your forgiveness. I just want you to know you are never far from my thoughts and always in my prayers. I had my husband read this post yesterday as well. He sends his love and prayers.
Love You!
3T
PS. We’re supposed to be here for you. So please don’t feel like you need to answer all comments, unless you want to. You don’t need the stress of any extra “have-to’s” in your life. xoxo
geek 05.30.08 at 10:48 am
I know from experience that they are not taught to be caring in med school. Personally I believe it should be a part of their training with mandatory followup’s threw their career. Its a business just like everything else, you would think customer satisfaction would be important to them. Edit: This certainly applies to nursing students as well, more so really…
geeks last blog post..Its that time again!
Kelly 05.30.08 at 1:32 pm
Hi Lisa,
Seven years ago my sweet mom underwent a complete hysterectomy due to stage III uterine cancer. During that surgery, her bowel was cut. Only, it wasn’t discovered until she became deathly ill 24 hours after surgery. She was forced to undergo 3 seperate colostomy surgeries and had to deal with the whole mess for a year. The whole story is too long & sad to detail here - but, I just wanted you to know - I really can feel your pain. I am intimately familiar with the situation you’ve described. I read your post with tears streaming down my cheeks - remembering my mom and thinking of all that you had to endure AND that you continue to endure. I’m so glad to learn that you & your hubby have educated yourselves so thoroughly. I am thankful that you have a great “real-life” and online support system. You’re in my thoughts & prayers. I am sending you strength & encouragement.
Best,
Kelly in OH-IO