In the whole spectrum of the chronic illnesses that you manage, do you ever feel like you have to triage yourself? That some issues get more attention than others because they are the more ‘serious’ of your diagnoses? Then you find yourself maybe a year later, realizing that you still haven’t even tried to seek help to sort out that particular issue? Welcome to the madness of multiple chronic illness.
When I first began this journey I really had it planned out. Not figuratively, but very literally. I was going to start with the first issue and work my way through everything that was going on and I was going to systematically go through each and every one of them. The reality, however, is much different, at least for me. The reality of the cost of medical care, even while having insurance, is sometimes staggering. The idea of having to add another specialist that costs $35 each visit and that sometimes requires more than just one, monthly visit is incomprehensible. Add on to that the cost of medicine, that may or may not work and the need to try one after the other, after the other, until maybe you find one that works. Don’t forget that not all may be generic and you may spend $45-150 on a medicine that you throw out after only taking a week or two worth. There’s also any testing that needs to be done to help the doctor diagnose the problem which can be anything from blood work to MRI’s and can cost a frightening amount dependent upon your insurance. Insurance feels like it’s changing regularly now. Ours used to be excellent and now I find I have to pay for things or meet a deductible for things I never had to before. And the expense has made me think about what is important or not, what can wait or not, no matter how it is affecting me and my ability to lead a relatively normal life despite my conditions.
I’ve dubbed this a sort of personal triage. The way nurses do this in a hospital waiting room. Weeding out those who are in dire need of assistance and those with problems that can wait. For instance, I can never rationalize the cost of a hospital visit even during a bad migraine episode or when my pain levels are uncontrolled. It does make sense to me to pay $250 (plus whatever they might give me that is not included in that $250, that you get billed for later) to get a drip of medicine or even turned away because they can’t do anything for me. It’s not like I’m having chest pain and I don’t know what is going on with me and I need a doctor to see me. I know my diagnosis, I even know what might help me in terms of medicine, but the cost is too steep. I know many in this situation too. It becomes this game you play when things get bad where you are pretty much taking things hour by hour, seeing if you can get through the next and next and maybe things will get better. This doesn’t just have to do with hospitals either.
The one diagnosis I have that I have only been treated minimally for is IBS-d. Irritable Bowel Syndrome of the Diarrhea variety. I have seen two different gastro-docs, had a number of tests done and have been branded with this particular diagnosis. However, because it is the -d type and I take opioids for pain, there is little they can do. The popular brand of medication to treat this can inhibit the opioids from getting into my system, which means they can treat the -d problem but my pain will go through the roof. This is what happens with comorbidity. So, the IBS-d has gone into the ignore pile. It’s there, but I have felt that in the grand scheme of things wrong with me that the IBS-d can wait. In the meantime, I have to deal with unpredictable, painful flares that truly inhibit my freedom and typically make me feel like a ticking time bomb. Things most people take for granted in the “Chronic-free world” like, going out to lunch, might as well be some Mission Impossible themed task. It doesn’t matter what I try to do, what I try to avoid, how ‘stress-free’ I try to make my life or what IBS-themed diet I try. It happens without warning and therefore truly complicates my life in ways that these more important chronic issues, don’t. It is frustrating all around and on some level, I realize that it is ridiculous to put off maybe finding someone creative enough that can offer more ways to help me, but it’s a vicious circle of complicated, chronic illness that continues to shuffle the IBS-d into the “It can wait” pile. The IBS-d isn’t the only issue that has been largely ignored.
Since the beginning of my treatment at pain management I have expressed multiple “pain areas” to my doctor. However, in this case, it was the doctor who triaged me, saying from the get-go that he only treats one issue at a time. It’s been two years that I have been seeing him and he is still focused on my sacro-iliac joint pain, for which I tried numerous ways (both non-invasive and surgery) to deal with and here I am, still with the same pain, maybe even worse and still waiting for him to address everything else. Every time I go to see him I fill out this questionnaire on a tablet, which asks me to highlight my pain areas (about 4) and we are no nearer to addressing them. Recently, I was talking with my husband about it, trying to sort out what I should do about it but there is basically nothing. I am forced to continue with this treatment plan devised by the pain specialist because I don’t have anywhere to go. I’ve seen other pain specialists who were horrendous and he is the last on my insurance close enough for me to drive to. If I want any semblance of treatment, for which I am acutely aware many in my situation don’t have, I need to stay put and have patience. It’s just a vicious cycle of triage, on our part and the medical world, never really getting treated as a whole, but piece-meal and ultimately, never really feeling better.
As always, thank you for continuing on this journey with me.