So I’m going to interrupt the telling of my sons story to share something that I have written for my son and everyone that worked with him in the NICU and out of the NICU over the past year. It’s hard believe he is here and he has reached the age of 1 (8 1/2 months adjusted). It’s a long poem but his story has not been short and every bit of it has gotten him here to this day. Happy Birthday little man and thank you to everyone that has helped us get to this point!
As the year is winding down and I contemplate all that happened in 2015 and all that is to come in 2016 I came to the complete and obvious realization that I have been stuck in a rut. And not just an “my disease has progressed” rut. More of an ” I have given up” rut.
As I sit on my couch watching yet another Netflix marathon with my ass molding into the couch that I seem to be glued to now a days I can’t help but feel utterly pathetic. I think to myself I need to at least try and accomplish something today in the house or get outside but I just can’t seem to get the energy to do so. Sure, part of my lack of energy I can attribute to the fact that my joint pain has increased lately. My kidney pain is what it always is and my overall condition is doing what I expected it to be doing at this age. Things are taking their course as I knew they would… but what the problem really is, is my attitude. My drive to fight. To do, well, anything. I sit and think about where my energy has gone, and why I have put on these 6 pounds that I can’t get off, I mean nothing has changed right?
Today was not a good day. Well, it was a fine day actually. It’s sunny outside and warm and summer is here which makes it a pretty beautiful day, but I woke up this morning knowing it would be a bit of a struggle. The last few days I haven’t been on my game. I have been exhausted..not feeling up to doing much, not focused, stomach issues making me drag and kidney pain a little worse than average. I woke up this morning with swelling so bad I could barely bend my fingers. I put on 4 pounds in 24 hours just from swelling. Possible from poor diet choices as well, I mean let’s face it when we don’t feel great, our “go to” can often be the unhealthy foods we aren’t supposed to be eating. Who can resist comfort foods in a time when we aren’t feeling comfortable after all. For me, sign me up anytime for chips and queso, pasta and ice cream. It’s all I need to get by, forever.
In the world of doctors and patients trust is a key component when it comes to diagnosis, treatment, and overall care. However, trust is a two way street. The doctor must trust the patient and the patient needs to trust the doctor. This is a relationship that can take time to form and develop, but what happens when you are working with a medical system that trains it’s doctors to never trust their patients? That is the system we are working in and it has created a monster of a medical industry filled with millions of un happy, mistreated patients, mis diagnosed patients, and doctors who believe they know all and are god’s gift to the world. We have entered an era of medical practice where the patient is no longer valued as a human being, but as a liar seeking attention, or someone who has something to hide, basically an individual that does not really need medical attention unless they present symptoms of death, and even then they probably would doubt the patient!
I ask myself this question far too frequently. Maybe it’s because when I first started having symptoms 10-15 years ago I was usually told it was all in my head. That was not all I was told… I would have people tell me I was acting sick to get attention too! Because.. That’s logical… Apparently people think that sick folk just want to lie around in bed all day. Does that really sound appealing to anyone? After about 24 hour you start getting antsy and need to get out of the house before you feel like you might actually go stir crazy! Trust me on this. But it wasn’t just the general population. It is also the doctors. Why do you think we need to have second or third opinions just to get a proper diagnosis? Doctors just don’t believe it if they cannot see it. Unfortunately often times when I get a new symptom (even with the doctors knowledge of my genetic diseases) they doubt it. If it doesn’t sound like a big deal to them they shrug it off or attribute it to medications or stress and the like. More often than not these symptoms become much more than anyone originally thought. I don’t think anyone really understands how insanely frustrating this is. To be second guessed at every appointment. Especially if you’re a woman, seeing a male doctor ( look for future blog post on this subject!). Females are often highly regarded as emotionally unstable, illogical, overly dramatic, no pain tolerance, etc. This constant treatment of doubt and questionability not only makes a spoonies life more exhausting and stressful than it already is but it can also hurt our chances of a timely diagnosis.
One of the most exciting experiences of being chronically ill and having to see the doctor all the time is making appointments! Are you getting the sarcastic tone? I dream of getting to sit on the phone on hold frequently while the doctors’ staff or their nurses tell me he/she will be unavailable for weeks..maybe months! It never made sense to me when first dealing with my diseases why I could never get an appointment in the actual week or days I needed the appointments to be! Why could I not see the doctor when I was not feeling well or when I was presenting with the symptoms that could help the doctor diagnose me. Instead, I would have to wait, which would result in an un eventful doctors appointment that entailed me doing my best to explain what I was going through while the doctor would look at me puzzled and state “well, I’m not sure what you were experiencing but since the symptom is no longer occurring let’s just wait and see if it comes back, then call me.”. “FREAKIN GREAT!” I would think to myself. In many cases, said symptom would return, and I would immediately call the doctor to be told “He’s not available until next week at the earliest” or “he’s away at a conference” or “She’s on vacation”. Sigh… “Why can’t I ever get in when I’m actually sick?!” So frustrating right?
The touchiest subject of them all. Medical Insurance. Specifically medical insurance in the United States. Now a days of course it’s almost considered politically uncouth to bring the subject up amongst acquaintances, but I’m going there. I can ramble off statistics about medical bills being the number one cause of bankruptcy and why it is so important to get universal health care in this country. I could tout of all the reasons why the arguments against universal health care are ridiculous. How if you think medical care would go down hill or waits would be longer for appointments etc. you may be delusional as we already have those issues, it’s just we have to pay for it out of our pockets. Out of pockets or out of taxes it’s all the same. But it’s not. It’s financial suicide for the people in this country. Medical Insurance companies have all the power and for those of us with chronic disease and/or rare disease it never works in our favor. So I’ll stop there and get off my soap box. I obviously have very strong feelings about this as most who have dealt with the medical insurance industry all feel the same way I am sure. It’s not something anyone who hasn’t dealt with it understands. Instead I’ll share my experience. What one person with a chronic illness deals with. Multiply this by millions and then you get an idea of how big of a problem it truly is.