Today I go to get a needle for a lot of blood work. I will sleep 4 hours, get the needle which must be done by 8:00 (the clinic opens at 7:30) and then go back to sleep. My disease, like many, changes the clock in the body so I do better in late day and evening/night, instead of during the day. For example vascular degeneration and Lewys-Body both have this as a common body change.
I was able to stamp, decorate and write over 30 postcards, maybe over 40, that I had matched both several weeks ago and this week. I don’t think I will ever be able to be strong enough to do postcards like I did them before: every week and in numbers from 30 to 90. However, to need assistance and have a severe disability does not make me less of a person, or less than what I was, it only makes the ‘now’ different.
But then everyone who sees me and has seen these last months thinks that there is no way I will live until Xmas much less next spring or summer. But after thinking about it, most decide that they just don't know, and maybe I can, since they have seen me when they were sure I would not last the week, or the month, and yet I survive, somehow. I want to see the next season of White Collar, and have no TV, so I need to wait for the DVD release. I look for a future where I have goals beyond this day, this week.
The actions I take now are deliberate and carved out of small pieces of time and energy that I can spare from the challenge of the work of living, and by that I mean running a Central Autonomic System. That it might take days or weeks of planning, and energy that takes 48 hours to recover only indicate the level of seriousness or care I put into what I do, NOT that I am 'lesser' in some way. I am busy trying to keep a failing heart beating, lungs with a failing diaphragm breathing, having a resting heart rate of 70-120 bpm (about what most people have when jogging), yet unable to cool my body and a body temperature of 68 degrees. You don't have to do this, so your life is considered 'normal' and mine, not. Beyond the heard and lungs, while for others 75-80 degrees is ‘room temperature’ and comfortable, for me, it is deadly as it overheats my body, slowly draining the energy and turning my heart to faster and faster beats until two to four hours later, after blood vessels have burst from the pressure of my body trying to sweat, attempting without hope to cool itself, I enter heat stroke. So people around me wear sweaters and talk about how cold it is. I meanwhile, get overheated in the ER or doctor’s offices, so that by the time I am called, my speech is slurred and I am in poor shape, my face red and swollen, my edema swelling my body.
Since I have Typanophobia, otherwise known as needle phobia, the knowledge that I need blood work, and must have it done today is all I think about, and the only way I can cope with it is by assuring myself that my protocol has worked and that soon it will be over. However, since the doctor list is long, it will be about 11-15 vials of blood which will mean there will be a needle in me for a full minute. After about 10 seconds or so, the control I have over myself gives out, and even with sound diversion, Linda holding me, visual diversion and the rest, I will scream, without stop for the remaining 50 seconds. Is it the knowledge that there is a piece of metal inside of me, piercing me like someone who is impaled on a knife in a fight? Or is it the actual pain of the needle as each vial makes it twist inside my vein.
The specialist had said that what ‘normal’ people cannot feel, I and one other person he has met in his decades of practice CAN feel. I am getting extremely tired of the word ‘Normal’ and second, I think this is probably the worst super power ever – a super extreme sensitivity which makes me feel pain and awareness for things most people cannot feel at all.
Either way, today is about survival, and once it is over, I will be relieved a bit……as I have a second needle procedure tomorrow. Only after that can my life start up, like a merry go round which is dark, and the lights go one, the music starts to play and it lumbers to life. Now, we are shrouded in the darkness of the unknown.
I woke today realizing that in the four years I have had this disability/disease, I have not met one medical professional, tech, receptionist, or fellow patient who had expressed anything other than distaste or disbelief that Linda and I are not only together but legally married. The second line of my care plan at Beacon says, “Linda is her married spouse”. And I wonder how many workers have refused, as they are allowed, to come and care for me simply because of who I love. When things go wrong they get: “That woman who came with her.”, “Her roommate.”, “Her Neighbor.”, “That friend”, “The…you know…HER.” Or they simply let things go and tell Linda that ‘Only family is allowed’, ‘There is no room in an Ambulance’, ‘Are you her care worker, can you come in? Oh you are her what? No, I am afraid that you can’t come in here.” And the dozens of variants.
Also, if you happen to work in health care, after several hundred visits to medical facilities, I want to let you know that if you are so unhappy in your work, please quit. I am there because I am having a bad day in what I thought was to be a long life, but now I find is a short and very painful one. Why I need to be grouched at, ignored, yelled at, lectured (because I am in a wheelchair and you don’t have space), or the dozen of other negative experiences you provide, is something I don’t understand. Perhaps it is the lack of snow, the sunshine, or just this province or city. I am fatigued from it.
The medical profession is a ‘service industry’ in which one is emotionally, verbally and sometimes physically abused, judged, assumptions made, full of strangely uptight and angry doctors, RN’s, administrators and other care workers. I dislike medical visits so much because it is always draining and almost always leaves me crying in the van afterward from the casual cruelty, being called ‘stupid’, ‘idiotic’, ‘time-wasting’ is something I have come to expect for simply asking the question, “Why?”
I am sure you are overworked, as I was when working a 14 hour shift, then a 7 hour break, a 11 hour shift then a 9 hour break and a 14 hour shift to make a full work week in a weekend. Yet, as I worked for a cinema, I was friendly, I was helpful, I listened, I cared, I gave away free popcorn, I saved toys of promos and gave to children and adults to make them feel that this was a special experience. I then worked another full time job and two part time jobs at night.
Sadly, I have yet to meet a doctor who could get hired to do customer relations or even serve popcorn with a smile at a cinema. As for trying and help a mother choose the right type of soft porn at a DVD rental shop for her 23 year old son who sent her in to get some for him, then help a 12 year old who is telling his parents that unless you can see a real dismemberment, the film isn’t worth watching (usually followed by a girl in an entire pink jogging outfit who is getting the latest Barbie film for kids). I say sadly because the closest I have come to kindness was an EMT who smiled when I was on the floor, overheated, having seizures and a police woman and female who assisted me when I was naked, outside and kept asking to be arrested. I had frostbite on my feet, and some other physical injury, but they treated me as a person, instead of an incident to be done with as quickly as possible.
Doctors and medical staff tend to be rigid and create conflict. Just try asking for things to change becuase you have say, a life altering chronic condition which makes doing things at an exact minute impossible and see how 'flexible' and 'understanding' they are. I ask for kindness or understanding, and it is considered conflict. Except for me, conflict was a guy who is trying to climb over the desk at you because he forgot to return two films before his three week vacation and your voice leaving him a daily message of overdue means he owes “WHAT? Not on your F**KING LIFE, GET YOUR C**T HOLE OF a MANAGER HERE.” And you have to say that a) you are the manager on duty and b) You are very sorry that he is unhappy with the service. Or someone who screams at you, or talks about how you are only there to rip off people selling overpriced junk food while they are buying it, and then you thank them. To do that every day and know that you are a person of worth and more than your job, while doing 14 years of studying, to know that having a good film to watch to unwind IS making the world a bit better, and that it is important, is true service.
I have had doctors tell me I won’t be here for more than a few months before telling me they are leaving for a month long cruise. More common in tests is doctors or trained technicians talking over my body about lunch, what they are doing that night, how long they are on shift and how much they dislike patients in general and how wheelchairs are such a bitch to deal with.
Yes, I have a blood and urine test today….
6 hours ago