Out of Control

We all know that any medical condition can get out of control in a hurry if it is not taken care of.
A simple cold can turn into pneumonia for some people. A flu bug can cause severe dehydration, weight loss, and weakness. A bout of Shingles can cause permanent nerve damage.

For psychological conditions, if someone is suffering severely from Schizophrenia or Manic Depression, those illnesses can lead to an untimely death. They can be so dangerous that we have protocols in place - if a person is suicidal, a doctor/hospital has the right to keep them for a 24hr observation or to even sign them in indefinitely to an institution. Likewise, a person can submit him-/herself into an institution by signing themselves in. (I am not well-informed on exactly how this process works, but I do know that it exists).

For acute, serious, medical conditions, like severe pancreatitis, appendicitis, potential stroke or heart attack, and even situations like persistent nosebleeds that have gone on for over an hour, it is almost a guarantee to be admitted and fully taken care of before being sent home. Your levels are checked and you do not leave until your levels are back to normal, your inflamed organ removed, or the bleeding stopped.

What about chronic conditions?
Have you ever suffered a flare-up so awful that you wish you could check yourself into a hospital and not come out until the flare up has been sorted out or at least the source identified?
I know that I have.

Several years ago I was experiencing such severe symptoms that no one knew what to do with me. I was desperately seeking medical attention. Something was amiss - something unrelated to the Crohn's or AS or HAE or Tach or AMD ... I was losing weight at a staggering rate, I was vomiting from the most menial movements, and I was frighteningly weak. My whole body shook all the time, my body temperature could not be controlled, and all of this attributed to flare-ups of my other illnesses. I was doing my best to eat 3000-4000 calories a day and still kept losing weight.
Here's the problem - I have chronic illness.

With the label of chronic illness, if no one can figure out the problem, instead of admitting me into the hospital for further investigation, I was always sent home with the same message: "I can't find out what's wrong, so it must be one of your chronic illnesses". That's it.
Due to my chronic illness diagnosis, even though I could barely stand, move, sometimes even speak because of the weakness, I was sent home because I have chronic illness and, therefore, needed to learn to live with it.

I think a big misconception, which is part of the problem, is that if they tell me that it is probably just my Crohn's or just my HAE acting up, then I know what I need to do -> like if they send me home then I'll be able to fix it myself within a week.

There have been many times where I have required emergency intervention to help get my body back to a manageable state and have received it. There have been even MORE times when I have wished that I could 'check myself in' to be monitored and assessed for a week, maybe even longer.
But with chronic illness, if they cannot see a simple solution, it is automatically assumed it is part of my complicated chronic illness history, and then nobody wants to touch those issues.
Because of this, there have been countless times where I have been admitted to the Emergency Department, only to be sent home in the same or in even worse shape. No direction. No doctor able to help. No relief. No referral. No idea about where to go next.

It is no wonder that so many chronic illness patients become hermits and shut themselves in, spending days and weeks in bed (or in the washroom). It is also no wonder why so many chronic illness patients often cling to unproven and often dangerous 'remedies'.

When things get out of control when you have chronic illness, regardless if it is caused by your chronic illness or some outside factor, it can be difficult to be taken seriously, especially if the problem is difficult to decipher or to treat. This is often when people need advocates on their side, or when patients need to become their own advocates.

Several years ago I got very lucky.
I had already seen as many health professionals as I could, from all facets of the health industry, including various visits to the emergency room begging to be admitted. When none of that worked, I randomly saw an Occupational Therapist. A random meeting (one I didn't even want to attend) with someone to discuss my work situation (a topic I did not want to/need to discuss). She, however, FINALLY saw the danger of the situation and that emergent intervention was necessary. I don't know what exactly she saw, but she called in a favour and got me in at an Urgent Care Assessment Clinic.
Following that, a good friend also called in a favour and got me in to see a family doctor who was willing to do ALL of the bloodwork all over again, instead of relying on old results.
With the appointment at the UCAC and the new bloodwork results, we finally found several problems and set out to correct them.
It still took over a year to bring things back up to satisfactory levels, but I am still here; still alive, and that's the important part.

For many reasons, the 'label' of being a chronic illness patient is a good thing. It reminds people that these diseases are real, the symptoms are real, and the complications can be severe. There are a few aspects that are often overlooked though, and there is frequently a disconnect. Any new issue or new symptom is automatically lumped into this pile of already diagnosed illnesses, and having a doctor really regard a new symptom as important can be a difficult road.
Another reason to be your own advocate and to listen to your body. This is all another reason to keep a medical journal and write everything down.

Keep on fighting. :)