When you don't look the part

During my last several hospital stays I have taken to wearing a camisole (helps hold up the chest) and loose yoga capris after the initial surgery etc .... instead of a hospital gown. And, boy has that caused a stir to the point of eliciting comments from caregivers.  "Wow, you look like you are ready to leave." (on day 2 post surgery, while I am shuffling around with my walker). Or, you don't like you have anything wrong with you (What about all the IVs that are sticking out of me?). 

I don't think people say these things to be provocative. I guess I get provoked.  Sometimes I take it as minimizing my suffering or what I am going through. And, I do the same thing. I try to look like and act like there is nothing wrong with me so that I can pretend that there is nothing wrong. 

It does raise the question/issue of how linked people's perception are to being sick, including my own. You have to look sick to be sick. It's weird. It is almost as if, the legitimacy of struggle/illness gets reduced when one does not look the part. That happens to me on a regular basis. When people see me in person, check out picts, especially when I do not have an aid in hand (crutches, wheelchair, walker, cane) then I must obviously be OK.  "Oh, you must be doing better." When in fact, I often don't use a cane, because it hurts other joints, or I am too lazy, or whatever reason. I am in constant pain in so many places. But, because I am athletic looking, thin, long legged, I must be ok. When I went to the hip replacement class, prior to my surgery, two separate nurses checked to make sure I was in the right class. I insisted that I was. It depressed me, or should I say enraged me. It even makes me second guess myself. ..." Maybe I really am OK, and have no problems, or have lesser problems than I pretend I do ". When I allow those sentiments to grasp hold of me it can be deadly to the psyche and hurtful.

Its a conundrum. One of the many that I have had the pleasure, so to speak, of tackling in the experience of being a patient.  Mostly I have come to accept the frustrations of my condition, there are times, especially when I am fragile that I react. But overall I have gotten to accept the humor in it all and so try to find the comical. 

If I find myself needing to react. I slyly ask people, "Didn't your mother teach you not to judge a book by it's cover?"

If I didn't I would be in a very unproductive place.

Hospitalization Recap and Analysis: How you survive a hospital stay

One would not think that lying around and recovery could yield so many different unique experiences including the good, bad, and ugly. But, it is true. I have had one of the wildest health and life adventures starting when I came out of traditional hip replacement surgery ten days ago, at Stanford hospital.

Veinipuncture: Each day a new vein supply had to be found since I kept reacting to the needless IV.  They had to bring in the vein specialist, which took over 4 hours, who put my IV right in the bend of my wrist which really was unpleasant. At the end of it all I was left with marks and bruises all over my hands and arms. The first days my blood pressure was so low that I couldn't lift my head off the pillow without spinning out. That was fine, where was I going. Not far.

Rounds and Sleep deprivation: There was the usual routing of being woken up every 4 hours throughout the night to check vitals, and then of course as soon as you do fall asleep the docts start the rounds at a god awful 4 AM. I desperately kept the sheets over my head with the hope of sleepy some  Thank goodness I brought lavender essence, an eye pillow, headphones, and my Ipod to play spacey music. (these were the essentials to maintain sanity and get some sleep). 

Neighbors: Unfortunately I had a pain in the ass neighbor, who, decided because she was up at 5 AM, so should everyone else. She had no sense of others. Asking for coffee, talking loudly with the nurse at all hours of the night, and tweaking out when her friends didn't show up when she expected them to. She is the only neighbor in all my years of hospital visits that I wanted to throttle.  I know I should be compassionate, but she really lacked it.

Pain Management: There was a young resident from the Stanford Pain Management Clinic, Carlos assigned to my case, who despite countless conversations with me still had it stuck in his head that I was on Methadone for pain management since last year. I kept reiterating that was not the case, but he clearly did not get it as evidenced on my discharge summary, that I needed to quit methadone. Clearly they are so immersed in their own process/bureaucracy that they believe their own bullshit. The pragmatics of that experience evade me. I guess because they wrote something down it must be true.  Isn't that a logical fallacy? A couple of times the whole team of 5, including head honcho, would come in and talk to me for whatever reason. I will be curious what that bill will be like. 

The EHR system, EPIC: Stanford now has a "sophisticated" and probably expensive electronic health record system. To provide meds, they have to scan your wrist band. However, when they record vitals, they only confirm your name. As a result I noticed last one evening that despite a nurse checking my name, was entering data into another patient record. WOOPS. She asked my name, but the name on the screen was somebody else's. Although in my situation it was not life threatening, it could have been. That definitely raised my blood pressure. It seems more foolproof to use the same protocol as they use with medications.

Nurses: Nurses come in all forms, good, compassionate, old school, those that go through the motions, and those that are somewhere in between. The last night I was there I had one unbelievable experience. It was the first night without a catheter and the first day I started ambulating with my little walker. I needed to go to the restroom and requested help due to the mobility restrictions and lack of stability. The nurse said, "Oh, just go to the bathroom on your own, and drag the IV rack with you using the walker." I didn't respond because I did not know what to respond with. Are you fucking kidding me? is what I thought and wanted to say. Finally, I got an nurses aid to help me. She left me on the toilet for over 20 minutes. Finally, I got fed up and tried to drag myself back to the bed with the IV rack in tow. Despite my gingerness, the IV rack got stuck in the wall mounted television's cords. I was so pissed. I tried tugging at my IV to no avail. I was stranded between my bed inches away and the TV. I wanted to teach them a lesson and was seriously thinking of ripping it out and having them find me on the floor. That would learn them, but maybe not.

Discharge Planner: Discharge planners come in many shapes and sizes.  They are supposed to help you with the transition home and arrange for essential equipment to be brought to your home. They are very sweet, smiling, reiterating how they are here to help you, saying, "Please ask me any questions and let me know if I can do anything for you." When I asked for a wheelchair and shower chair (due to my restrictions and concern for preserving my other joints) the conversation went south. They said, "Oh no, insurance won't pay for that, you will responsible for the charges, it will be cheaper to get that on your own." I even spent several hours in the wee morning the evening before discharge highlighting the relevant sections, criteria, and codes of my insurance's clinical policy bulletin governing durable medical goods (DME) to  show them what my benefits were. And, all I was met was with resistance. They wouldn't even look at the document. All they kept saying was that we want to help all our patients but you realize you will be financially responsible. I kept saying, "... fine, but please if the criteria are met, can you please use the codes and terminology that my insurance requires to get things covered." I believe, if I have insurance, I should get it to work for me as much as possible. For Christ sake, for a shower chair, the requirement is that I cannot stand, which I cannot. Finally, I asked, through a torrent of tears, what is the worst case out-of-pocket scenario for these items. For the shower chair it was $27.00 and the wheelchair it was $56.00 a month.  That is far cheaper than purchasing on my own. The cheapest shower chair is around $45.00. At the end, I got what I wanted, but it was a horrid experience. Thankfully, I was right, insurance covered all the DMEs I requested. (I found out later through the case manager that my insurance company assigned to my case that the situation should not have happened. She never was asked what my benefits covered.)

So, that is a not so summary of the highlights of my 3 night stay at the great Stanford Hospital. An acme of California's medical systems. I remembered from my last experience how much I hate that system, and this time it was even worse. It is shocking. Everything is so specialized and no one seems to know what the others are doing. The continuity of care and follow through are fragmented. Dr Maloney's team, was at least on top of the things they needed to be on top of. This experience reminded me and reinforced the reasons why I have stuck with the Colorado team and Vail Valley Medical Center for so long. Increasingly I am thinking smaller is better. People are less disassociated from the larger picture and service is overall better. For instance, I prefer Ace Hardware store to Home Despot (oh, that is Home Depot). The prices may be higher, but you get good customer service and knowledgeable staff. 

The lesson in this tale is multi-fold:

1. Don't blindly trust the system including the people in the system. It could have dire consequences.
2. Be educated about your insurance policy.
3. Make sure you know what is happening around you. 
4. Be your own advocate or have someone else be your advocate.
5. Have notes written summarizing highlights of important conversations including names and dates.
6. Bring personal small comfort objects, whatever that is for you. 
7. Bring earplugs and try to get the bed farthest from the door (very helpful for sleep).
8. Bring a good dose of humor. 

Struggling

I am 6 days post op total hip replacement. Although this should be a relatively easy surgery I am seriously struggling -- mostly emotionally. I feel like I am free falling and cannot get any firm hold on anything. The rest of my struggling joints are being hit hard by my weakened state. I am struggling with being overmedicated by the Stanford pain management team. Who I now personally hate.  Since I came home, Friday, I have not been able to stay awake. It is a horrible type of drowsiness. Saturday, I woke up at 11am, then despite my efforts fell asleep during my uncle's visit, at 1 PM and slept through 6 PM. I desperately needed to wash up, but I couldn't be bothered, nor had the equilibrium to stay alert and upright.  Basically the same thing happened Sunday and Monday. Yesterday I woke up for 1 hour and then slept until 6pm. This is so unlike me. I have never had such an extreme reaction to meds. Also, it brought along a serious desperate depression of not being loved, forsaken, raging jealousy across a wide spectrum of  "things" -- not having children, no one sending me flowers, none of my friends calling (although my neighbors have been so terrific, and Larry too), why is my life so difficult?,why do my friends have such fine lives. you name it I am feeling it. It has been a very long time since I have plummeted so far and deep. I have lashed out at Larry and succumbed to my most immature reactions. So much anger and hate. To top it off, my brain is not functioning at all. I feel like there is a hole in it. I am clearly not firing on all cylinders. My negative experience in the hospital set the stage for a lot of these issues. Larry keeps telling me to let go, let it ride, but I am not succeeding very well. Every little thing is getting under my skin. This PM I have somewhat stabilized trying to hold it together. I yearn for so much and need so much. There is no filling the hole inside. So, I keep looking at the picture of Genesha that I have here in my room, the God who removes obstacles. I am looking forward to a little peace and hopefully happiness. I have struggled for so long.