I would love to work a decent nine to five, again. I have worked jobs here and there but nothing lucrative. I have tried to start businesses but, as of yet, nothing has been truly successful. The only thing that I seem to be successful at is taking care of people. I was a single mother of three and then, became a wife and stepmother of four as well. Dropping off and picking up children from school, maintaining a sanitary home, attending appointments, cooking meals everyday, and all that comes with the basic necessities of maintaining life tend to take up a majority of my time and can become stressful. Yet, when you have a partner that has medical issues, your stress levels have the tendency to be extremely unbalanced. To have to maintain some sort of balance for everyone while dealing with these issues can be a challenge. It has been a challenge. Believe me.
From the very first time that my partner had an acute attack, I have been there with him. To see a grown man convulsing, vomiting, and crying from severe abdominal pain is heart wrenching. I learned that he has been dealing with this sort of pain since the age of sixteen and over the years the pain has worsened. His personal doctor, emergency room doctors, and family all believed that he suffered from an extreme case of
IBS. Being the person that lived with him and a research nut, I begged to differ. The symptoms are similar but there are far more differences than similarities.
I began to notice the different triggers that would produce an attack, whether severe or minor. Believe it or not, only about a third of the triggers for his pain are food related. The others being his prescriptions and any type of stress; whether it is his or someone else's. These triggers have caused many emergency room visits and hospital stays. His other medical issues have prevented an earlier diagnosis for his stomach pain. Yet, as time went on, I have noticed that part of the misdiagnoses were due to a combination of factors:
1) Emergency Room Prejudice: Due to the constant influx of patients into the emergency room, many patients are labeled, stereotyped, and put into categories of importance. Hospitals will deny this but with as many emergency room visits and hospital stays that we have had to deal with, you begin to learn the system. Keep in mind that the majority of the doctor's that are in the emergency room are interns and medical students with very few seasoned, experienced doctors in that department. That is why you are admitted, so that a doctor that is within the hospital that has expertise in your particular condition can rightfully assess your condition. Hopefully.
2) Lack Of A Support System: Once again, stereotypes and prejudices come into play. During a visit to the emergency room, many are in severe pain or even incoherent and are not able to to speak for or speak up for themselves. That is why it is important for someone to be there to answer the volatile questions that could better assess a patient's condition. If not, many are put into the proverbial box or not treated as they should.
3) Need For Compassion In Compassionate Care Setting: The time crunch within this setting allows for prejudices to come to play. Those in pain are labeled drug addicts that come to get a fix. Even if there is evidence to the contrary. That becomes easier and time efficient rather than asking the deeper questions. Those that are incoherent are labeled high, crazy, pushed to the side, or just discharged because there is a need for a bed. We, too, have witnessed and have been subjected to this.
4) Doctors' Ego: We have come across some real assholes within the medical profession. I have truly witnessed the God complex first hand on numerous occasions. You are taught that the doctor would have a listening ear and assess your situation accordingly. That is not always the case. Some medical professionals tend to let ego get in the way of their profession. During these thirteen years of our relationship, I have done my own research along side of all of this. Determined to prove that his illness was not a
Somatoform Pain Disorder. I decided to go to doctor's appointments with him and began suggesting a battery of tests. Only within the past few years have these tests been actually referred. Only at the doctor's request, of course. As long as we are getting closer to the truth, prognosis, and solutions. That is all we want.
5) Budget Cuts: My favorite! As we already know, budget cuts ruin everything. The cutting of corners always has a negative side to it. Whether it is at your house or the White House, they are very much apart of everyday operation and survival. It is just what it is: a bigger fish to fry.
So, it seems that we are finally getting to a diagnosis for his abdominal pain. It is appearing to be a
porphyria. If so, this is a double edged sword. We will be grateful for an actual diagnosis; as well as a sad because there is no cure for it. There is to be diet and stress management but the pain aspect of this condition is inevitable.
Porphyrins have been detected in his urine on a couple of occasions. Now we have to set up more tests to find out which porphyria he actually has. All the while he is dealing with
congestive heart failure, a
mitral valve replacement six years ago, and an upcoming
aortic valve replacement within the few weeks, and all of the possible stress and
depressions that he goes through as a result. Believe me, this is constant.
As we await the actual date of his surgery, I can see the depression fade in and out. I can only imagine what he can be going through, mentally. He tends to internalize his stress and anger; in which causes him to misdirect those very emotions instead of dealing with them head on. This has a negative influence rather than a positive one on him and all that are involved; all the while he is unaware that it causes the very symptoms that instigates an acute attack. He sleeps for over twelve hours everyday; in which causes him to miss out on life; in general. I don't know if all of his fatigue's due to his physical or mental health. I can only imagine but am pretty sure that his very own mortality must come to mind constantly. He admits that he stresses too much over his adult children. He has acknowledged that he longs for the same closeness that was shared when his children were younger. He doesn't seem to realize that they are adults with families and that they are taking advantage of his kindness. He will take the closeness any way that he can; even if he hurts after. He just wants someone to call him with general concern rather than a general need. He doesn't realize that he is abusing himself by neglecting himself. He just wants to prevent the world from hurting them without realizing that they must learn to adjust to life without his assistance. I try to be as much of a support system as I can be through all of this, even though I am constantly stressed by it all and the fact that all of this requires me to give 175% because he can only give 25%. Yet, somehow he feels that I can give more. People whose opinions don't matter think that I should be doing more. I can't. What would be left for myself and where the hell are they when the going gets tough?
I have been through the issues of single parenthood, blended families, raising children and so much more. All the while putting my dreams, aspirations, and goals on hold. I couldn't be selfish and put myself first. It wouldn't be fair. Yet, whenever I plan anything, his illnesses and disorders become the main focal point in our lives. It is just the way things have been. I hope this surgery, this diagnosis, and a little therapy will do him just fine. The next objective is to get him to even see someone. Five children are out of the house, two more to go and there's a gang of grandchildren to live to see grow up. I just want him to conjure up the will to live.
Believe it or not, the things that I want out of life are very much important to me. I have numerous entrepreneurial ideas that would be lucrative for the community as a whole; as well as myself . I write every now and then and have been told that it is something that I should pursue. To balance my
qi, I dabble in art that I have began to display around my house and have been complemented on. I, also, am an excellent cook that tends to be successfully experimental in the kitchen. All the while, dealing with my own
OCD and a bunch of forgotten acronyms. I have this under control. I play my position well. I may not get paid for being the mother, wife, lover, chauffeur, cook, laundress, maid, nurse, therapist, maintenance, inventory specialist, janitor, housekeeper, IT specialist, hostess, party planner, personal assistant, stylist, interior designer, interior decorator, encyclopedia, dictionary, and psychic medium; just to name a few. Add
synesthete (more
here,
here,
here, and
here),
intuitive empath (more
here and
here), artist, future author and entrepreneur to that list and it should sound about right. Now, if this is not work, I don't know what is.
