Ugh, Fever

Stronger Body Weak Spirits

Physically I am better. This weekend I felt like a human pin cushion but the end result is improved health. My blood work is great given the fact I have two open wounds hooked up to a wound vacuum. I am largely done castigating myself, content now to move forward. It is the moving forward that worries me. I am concerned first and foremost about the cost of home care. The bed I bought cost as much as a car, a very nice new car, a luxury import. Wound care is covered by insurance. The wound vacuum, I must rent and the company is interested in one thing--two weeks payment inadvance. It does not take much thought to realize the next few months are going to be frightfully expensive. All decry the health care system, acknowledge I am gettng screwed and then add the proviso there is nothing we can do. Sadly they are correct. My health insurance sucks and I have no other options. What haunts me is what happens to others that do not have a large and supportive family. Where do they go? What do they do under identtical circumstances? In short, I know I am lucky. Howver this does not change the fact I havee been in the same room for twelve days and my spirits are low.

Coping with boredom over the weekend was hard. Crappy novels and football are distracting but for only a while. Hence much of last night was spent crying. I just could not help myself. I was also smart enough to wait until it was very late so I could cry in peace. The hospital I am in is very patient oriented and I am often asked about pain and if I am depressed. I try to tell them, hell yes I am depressed, is that not a normal reaction. Such honesty results in a suggestion a psychiatrist make a visit. Great, is he or she going to make me heal any faster or solve the financial implications of my wounds? Don't get me wrong--if I suspected I were clinically depressed I would seek help. But I am down for damn good reasons and a good cry may have helped me. I am functioning but just sad and worried. I get home Thusday assuming the bed arrives as promised. I am sure my spirits will soar when I get home. I miss my black lab Kate and am tired of hospital life. I also realize when I get home that my soaring spirit will be confronted by a harsh reality--i will be bed bound for months, utterly dependent upon others. This fact more than any other bothers me the most. I simply have not been dependent upon others since I was a morbidly sick child. This is a state I have never wanted to repeat. It is my hope that with the help pf my family I can get through this unscatthed. No wonder I am worried.

No More Self Castigation

One and all I know implore me to stop beratting myself for developing pressure sores. At an intellectual level I know this is good sound advice. The emotional side of my personality however is far less tolerant. I chalk this up to my Irish Catholi upbringing. We Catholics specialize in guilt. Hence I may have left the Church but the Church has not left me. In short no more posting of self recriminations.

I remain medically stable but am in need of a blood transfusion. Debridement of the wound on my left was bloody. I essentially had bed side surgery--the details of which are too unpleasant to detail. I assume with the transfusion I will feel stronger. Today and yesterday my battle is boredom. Internet access remains limited at best. The higlight of my day was a sushi dinner a friend brought to me. Wow, real food. Better yet my brothere stopped by and brought me an ice cold beer. It was the second best beer of my life!

How do I cope with boredom? Lots of bad novels, football on TV, so yes I am desperate. And I long to answer comments many have made but cannot do so. As I said internet is severely limited. Indeed, writing theses words requires much squinting, a crappy key board, and far too smalll TV screen. Boy do I miss a real computer! However even the bad access I have is better than nothing. Okay that's all for now. Thanks for the support and I promise to cease beratting myself. Your words and comments help very much.

Beratting a Bad Cripple

Claire asked why do I berate myself. Well, in part I have feared, truly feared, would develop such a wound or wounds. I worked hard to avoid such sores as I know they are deadly. I took precautions to insure they would not occur. These precautions failed. Yes much was working against me, surgery, bed rest for two weeks etc. In short I alone am responsible for my current predicamant and utter dependency. I do not do dependency well nor am I good at asking for help. But I am going to have to improve these skills. I have no choice. I doubt I will sit up before Xmas. Acknowledging this fact is deeply depressing. The fact is I am just starting on my road back to normalcy or what passes for normal when one is paralyzed. Sorry but I guess even I have my demons to fight. And fight I will. I just need time to adjust to my current situation.

Weekends are Rough

As many know, hospitals hum along during the week. That action comes to a grinding halt on the weekend. Last night was quiet and today will be slow--way slow. This lack of activity is good and bad. On the downside, I have too much time to think. I torture myself for hours on end. How did I let two wounds, horrible wounds develop? My answer remains the same--I have no idea. This so called answer is as unsatisfactory as is maddening. I have lost much sleep contemplating and berating myself. Yes this is not productive but what do you do at 2AM after being woken up for vital signs.

The only good news is that I bought a bed or will do so Monday. Actually I have not bought a bed but a luxury car--yes the bed cost a small fortune. Did I have a choice? In a word, no. The fact is even when healed my skin will forever be compromised. This fact is not in dispute. But insurance is very clear--a bed is not covered, it is not part of my contract. No appeals are possible. Who is at fault for this? Why me of course. One and all tell me I have terrible insurance. Tell me something I don't know. What the powers that be don't want to hear is why. Why do I have bad insurance that I fought tooth and nail to get.. This story falls on deaf ears and cold hearts. I will have much more to say about this as I heal.

To fend off boredom I am reading many crappy novels, what I call reading TV. I try to surf the net via my TV and tiny screen. This is an exercise in frustration. What I am sure to always do is never ask for help. In ten days I have hit the call button twice. This, I know, makes me a good patient. More than anything else, this reputation leads to good care. Hence I think of Irving Goffman and his work on institutions often. This is as relevent today as when it was written. When I get home it will be the first real book I will read. So dreams of home and normalcy, my old life, will dominate my thoughts today as visitors do a piss poor job of entertaining me. Hopefully said visitors will bring real food and better yet a beer.

Good, the Bad and Ugly

Let me start by saying thank you for all the kind words, support, and suggestions. Today was a mix of emotions, news and procedures. As to the good, I found a used clinitron bed I can purchase. It will arrive next Thursday so I can get home. I am simply going mad here in the hospital. It is a fine instituion, the care quite good but far from ideal. This is in no way a complaint rather hospitals are dangerous uncomfortable places to stay. As for the baad, my small wound on my left side was debrided. In other words I had bed side surgery. The wound is deep, much dead tissue was removed. Just writing this brings me to tears. I had hoped, was in denial maybe, it was superficial. So here I lay with not one but two major wounds.

If I have done anything right it is to torture myself with how: how did this happen. My answer is as unrevealing as it is hopeless--I have no idea. This more than any aspect of my care haunts me. Measures have already been put in place to insure I will never be in this situation again.

Finally, the good. I am blessed with a great family. The support I get is overwhellming and deeply moving. I am not good company but I do appreciate all that my family does. Sometimes I just need to be alone, work through things by myself. I hope they understand thIs. I guess I am trying to confess I have been cranky and upset in the extreme. This is going to be a tough road and return to normalcy--one that has barely begun. I also know my crankiness will carry me far--it always has when times are hard.

Day One Report

Thanks for the words of support. I cannot reply in the comments section given my limited access to a decent screen and internet. Yes I will get through this giant sore. It will heal but the reality is I am in for a long haul--months in fact. I must be better as last night I wanted a beer, a sure sign I am not depressed. The obstacles I face now are insurance and money. Insurance will not cover the cost of a special bed or the KCI wound vacuuum. I cannot go home without either. In perverse insurance logic wound care is covered but not the equipment needed. This makes no sense and I have been repeatedly told my insurance sucks. Tell me something I don't already know. Frankly what people here miss is that I am lucky to have any insurance given that I am self employed.

Today will be more calls and more frustration. Each day I realize with greater clarity how effectively people with disabilities have been cut off from access to good insurance and adequate health care. High tech skin care exists, wound care specialists are gifted and yet accessing this care is deeply problematic. My existence is proof great care can be had but that care is not dictated by medical need but money. As long as I am in the hospital my care and healing is not in doubt. Going home is another story. This will be a long saga, one that has not yet begun. I will need to ask for help, lots of it. I suck at asking for help and am even worse at being dependent upon others.

Where does my wound stand? My right hip is better. The wound is starting to fill in so progress has begun. My left hip has a small sore, the result of being off my right side too much in compensation. Most importantly my skin everywhere else remains intact. As for my spirits, they are down but I remain resolute. I read all the time, and never ever ask for help. I never ring the calll bell for the nurse--or I have done so just twice. This more than any other variable leads to good nursing care. That's all for today as I have much to work on to get home.