I have several chronic conditions, which is part of why my postings are so limited, and so infrequent; I spend a great deal of time resting, and I lack a good tablet with which to use in bed. I also suffer from what they term as "pain fog", which also makes it difficult to focus for extended periods of time; where I used to be able to zone in on something for upwards of six to ten hours (as necessary for work), I can't really focus for more than an hour or so, if that, anymore.
Unfortunately, I've found that the US healthcare system is not designed for people with chronic illness, in the slightest. In the past twelve years, my condition has deteriorated, and I have received very limited support from the local hospital system, largely because they simply do not understand the conditions, and do not create solid support plans for the chronically ill.
Let me explain what my chronic conditions are, so that there's an understanding of where I am at in the medical system. We'll start with a basic overview of what conditions I have, then get into what those conditions entail, so there's a pretty good picture of what my medical needs are - even though most of my medical conditions aren't very well studied at this point, which is another point we'll touch on later in this post.
One of the conditions I have, that is vastly misunderstood, is Fibromyalgia. This was one of the first things I was diagnosed with when my health began to rapidly decline and I had insurance to even get checked out. My first rheumatologist suspected this was an issue when I first began seeing her in November 2006, however I wasn't officially diagnosed with this until February 2007 - she wanted to have some time to observe and make sure that this was the case, because at the time, she also saw signs of what appeared to be Rheumatoid Arthritis; I did not, however, have RA.
While it would take till December 2015 to discover that what was thought to be RA was actually something else, the second chronic condition I suffer from is Ehlers-Danlos Syndrome. This is considered a rare condition, and it's a genetic condition, meaning that it's something I've had since birth, and inherited from my parents.
Now, we were always aware that I was hyper flexible. However, having grown up in the early 80s, when doctors were less connected than they are now, it was never really caught by my paediatric doctors. The hyper mobility of my joints was just part of what made me me, a bit of a "super power" on the playground, as it let me do a few things other kids couldn't, and a huge advantage in the various forms of dance I was doing as a child. Sure, from time to time, a joint might dislocate/subluxate, however for just over two decades, the joint would just pop right back in and I would keep going; that was rather part of the condition.
If I had insurance earlier, the EDS might have been caught, as in early 2004, I began having problems eating solid foods easily. It would take me an hour or so to get through a cheeseburger and normal sized fries, let alone the drink as well, and my stomach wouldn't feel too great while doing so or for a while afterwards. This was the first signs that I was suffering from a common associated condition called Gastroparesis. Essentially, the stomach muscles were having difficulty moving enough to churn up the acids in my stomach, so things weren't digesting properly, causing them to sit in my stomach for longer than they should.
Obviously, this hasn't gone away, I just changed my eating habits to try and deal with it. Once I had insurance again, eventually I had an endoscopy without a colonoscopy, and they discovered the sandwich I'd had the night before was still roughly 60% - 70% intact in my stomach, about 8 or so hours after I'd eaten it. This lead to a bunch of testing that involved radioactive eggs and six hours of imaging, but it was discovered that I did indeed have gastroparesis, and my stomach wasn't doing well. I have had to continue adapting my eating habits.
The gastroparesis problem, combined with something called Polycystic Ovarian Syndrome, lead to Type 2 Diabetes. Essentially, since I had minor issues with insulin from the PCOS and then had food just sitting in my stomach for extended periods of time, along with a family history of type 2 diabetes, in April 2014 the shoe finally dropped - despite the fact I tried to eat pretty healthily (I actually largely followed the hospital's bariatric track diet).
This largely covers the medical problems I have, since everything else stems from these conditions. I also have some mental health issues, but mental health really requires its own post - that system is even more broken than the medical system. So let's quickly break down each condition.
This condition is pretty complex. There's actually more than ten different types of EDS now, however each individual only has one type. It's pretty hard to diagnose, because there's only one or two types now that have actual hard genetic markers, so largely it's diagnosed with a genetic panel that has broader markers that point towards the disease rather than directly mark it, coupled with physical examination that narrows it down from there. EDS is in a family of conditions that includes Marfan syndrome, and Osteogenesis imperfecta, which it needs to be sorted out from. All three of these often get mistaken for RA or Lupus initially, more often for RA than not; most of the people I have met that have EDS have been mistakenly diagnosed as having RA, and as such, they have had a great amount of trouble with their medical history due to the medications for RA causing problems since it's not the medication they need.
I have what's know as "Type 3" or "Hypermobile" EDS. Here's the overview of this type from Medscape's EDS article:
Type III, the benign familiar hypermobile form, affects 10% of patients and is inherited in an autosomal dominant pattern. Patients with this variant have minimal or no skin changes, but they do have a striking hyperextensibility in many joints. This hyperextensibility usually causes orthopedic consequences (eg, severe osteoarthritis) in the long term.
The hypermobility type of Ehlers-Danlos syndrome may be associated with uterine, rectal, ovarian, and/or heart prolapse, although multiple visceral ptoses are rare. An MRI study of this hypermobility type showed consistent and specific white matter findings after physical trauma.
Essentially, in the grand EDS lottery...I lucked the fuck out. There's still a lot of issues that generate from this disease - such as the development of osteoarthritis, which was caught in late 2006, but in the overall scheme of things, it could have been much worse.
Largely, my problems with EDS come from the osteoarthritis, and the random dislocation or subluxation of joints. I have trouble getting up in the morning because my joints are stiff, even with medication, and I'll have my joints just suddenly give out - and when they give out, sometimes it's not that the connective tissue is overworked, sometimes the joint actually somewhat moves out of place or entirely dislocates.
One of the problems with EDS is that while geneticists, rheumatologists, orthpaedics, internists, and paediatric doctors all learn something about it, only specialists and geneticists can diagnosis it along with giving decent amounts of information on the disease, and only the specialists can provide a comprehensive treatment plan. And specialists are not all that common, so getting to one can be very difficult.
I still personally have not seen a specialist, and getting my doctors to send me to one has been an uphill battle, despite how many times I end up in the ED with a joint having a problem. Even with finding a specialist with a smaller scheduling load - most have a waiting list out for a year to thirty months - I can't get them to get it together enough to send me to see one.
The other problem is that despite there being specialists who dedicate themselves to treating and studying EDS...there's not a lot in the way of treatment right now. Mostly, it's physical therapy that focuses on activities that are low impact and that build up the muscles around the connective tissue to protect them - and it's very important that people with EDS get this physical therapy rather than just go off to the gym to try and do activity themselves, because they can do more damage to themselves without this knowledge.
Currently, there's no specific, specialised drugs for treating EDS. It has been found that opioids are actually pretty bad for EDS, as it messes with the pain thresholds of the person, much the same way it dose for Fibromyalgia patients. It basically can make the pain tolerance evaporate, and make it necessary to use higher doses of the opioid to control the pain. Largely, EDS gets treated with analgesics from over the counter medications to things like high dose ibuprofen and ketolorac injections, depending upon what other medications they're on. The only other thing that has been noted to work at this point is Vitamin C, as it helps with collagen repair.
I largely attribute this to the medical industry's lack of initiative to invest in finding real treatments for chronic health issues. There is little to no investigation into how to cut down on pain, aside from anecdotal takes about switching to medicinal marijuana at this point - likely due to the lack of industry assistance.
One of the most maligned diseases in the medical industry, Fibromyalgia has spent decades as a waste basket disease and being labeled as a disease that is "of the mind", and that is primarily a disease that "women dream up". Fortunately, in the past several years, there has been more and more solid evidence of Fibromyalgia's existence...most of it not coming out of the US.
It has been discovered that one of the core issues with Fibromyalgia is that several different nerve fibre sets are denser in people with Fibro than in people without the disease. Examples of this are the lower mean epidermal nerve fibre in calf and thigh (see this study for more information) and the cutaneous arteriole-venule shunts in the hands and feet (see this study for more information). While this is a new area of discovery for the disease, it seems to be supporting a lot of the various complications that are found in the Fibromyalgia pool - I can tell you that the AV fibre issue is likely the base of what's termed as Raynaud Phenomenon, which occurs with varying levels in some people with Fibro; it's an issue I deal with frequently, and it's not all that fun.
The breakthrough of discovering the nerve density differences may help solve the issue of treatment failure for Fibromyalgia patients. While some nerve medications have helped - Lyrica is one that the majority of Fibro patients are on with some degree of pain reduction - they have not entirely solved the problem. Some types of SSRIs have helped, as any reduction of stress will decrease pressure on the nerves, and if there are an additional density of nerves, a decrease on them will do a lot, however again, this hasn't solved the problem, as the root of it may be that there just are way more fibres than there are in non-Fibro individuals. That alone changes how treatment will need to be handled.
This again is another disease that benefits from medicinal marijuana, however it is taking some time for the US to even consider that on a broader basis, which makes getting data for it difficult.
Largely, the issue here is that the stomach muscles are not moving as much as they should, and there is a chance that they may get slower and slower as time passes. At the moment, I have what they term "mild" gastroparesis, meaning that the muscles still move somewhat, just not at 100% of what they should. So the gastric juices do still get mixed at bit, it just takes a longer amount of time than it does for someone with a stomach that goes at 100% of how it should.
This leads to needing a bit more time to eat, and a longer period of time to digest. I need to be sure to chew everything well, if it's not pre-processed; sometimes, we will just toss stuff into a food processor, and I'll eat what's essentially pre-finely cut food. That is a bit of a process though, so that only happens if my stomach is really being a brat, otherwise I just have to take a minute or two to chew up what I'm eating, leading to things taking about half an hour to eat. I also shouldn't really eat more than about 3 oz. at any one time. Then I have to wait at least 2 - 3 hours before I can lay down or anything, so that there's time for the food to get out of my stomach entirely; if I lay down any sooner, it will slow down the digestion process, as sleep slows down your body.
So while this wouldn't be too terrible on its own, it can be rather difficult to deal with when you try living life outside of your home. There's not much in the way of treatment for more mild gastroparesis, and they avoid the more hardcore methods when you're at this stage. Medications have some not so great side effects, so mostly it revolves around watching what you eat, avoiding things that upset your stomach, and keeping Zofran on hand for when you feel ill.
There are a lot of things they are looking into here. Unlike chronic pain issues, not being capable of eating or drinking gets a lot of attention, largely because it can lead to death in a more imminent fashion.
This one gets complicated.
So, you're supposed to test your blood sugar at least daily for diabetes. Unfortunately, because of the EDS and Fibro, I largely can't test my blood sugar regularly. Either I'm having Raynaud's and just can't get any blood out of my fingers, or I'll have the issue where I will get the pin prick to draw blood, and then I can't get the bleeding to stop because the EDS causes the skin to have issues with healing. It's a pretty not fantastic set of issues that makes testing time a hellacious event that I just can't deal with anymore.
I've been attempting to get a constant monitoring device, the Dexcom 5 unit, that basically has me inject a small piece of tech subcutaneous at my belly, then it just monitors glucose (and other) changes at it's base, which transmits to a web-based cloud that can be viewed on my PC or on my cellphone. But my GP suddenly came back and marked it as not medically necessary, which lead to a huge breakdown between myself and the GP.
At this point, I'm basically trying to manage my diabetes without medication and without actual monitoring, and just getting an HA1C every three months, hoping that I'm keeping my numbers down blindly. Because the medical staff can't look at the larger picture and the comorbidities of my conditions - because I'm "just a type 2 diabetic", they won't consider the CMD, even though other medical conditions are making it difficult to manage the diabetes.
It's stupid.
Frankly, I don't think the bean counters who run the US health industry want to care for chronic health issues. For them, it's a huge money sink, with very little return. They don't invest in it, as they don't see a way to make a buck from it, even though chronic illness patients are their longest term customer.
It's actually likely that chronic illness patients would need less time in the ED and hospital if there were more investment in our conditions. Treatment plans that were more comprehensive would likely keep us from needing to go to the ED because we don't end up having the situation that would land us there in the first place. Better medications with fewer side effects, that can work with other medications in case a person has more than one illness, or better multipurpose medications that can cover more than one illness, would go a long way to help treatment...but those do require the investment to develop and study; there will be failures but those failures may end up helping another ailment - the point is, the industry needs to be trying harder.
Another issue that at least the US medical industry has is that many doctors and medical management start to view chronic patients more like they themselves are their chronic problems. This leads to a lot of disconnect between medical staff and the patient, and also can elevate the patient's anxieties and depression, or even create it if they don't already have such. We are not our conditions, we are not the problems they create - we don't want to be in this cycle any more than anyone else that gets involved in it; if anything, we want to be out of it more than anyone else.
Sweeping aside the chronically ill the way the US medical system does only leads to making the quality of life of the chronically ill worse. We never asked for this. We don't want to be here either. All we want is the help to improve ourselves as much as possible, so that we can feel like human beings, lead as full of lives as we possibly can, and if it becomes possible, cut down the frequency our illness rears its ugly head.
That shouldn't be too much to ask for.
I have friends ask me what they can do to help. Honestly, if you know someone who has a chronic illness, be open to learning about that illness. Learn about it not just from your friend, but on your own dime - crack open a search engine, go to trusted medical sites like Medscape or the Mayo Clinic (or if you have money to throw around, UpToDate is one of the best medical sites around), and be Sherlock Holmes. The information is out there, and you may learn something your friend doesn't know - which will make your friend's day, trust me.
Another thing you can do is don't take it personal if your friend with a chronic illness just isn't up to doing something with you. It isn't you, it's the disease - they just don't have the spoons to do anything right then; just let them get some rest, and they'll get the spoons to do something again. They just need some time.
Lastly, offer to help them out, and don't be offended if they don't always accept. Help is super appreciated, but chronically ill people will try to do as much as they can on their own. We want to be independent, but we know we have limits; we will push these limits like crazy, but we will hit them and need a hand. Friends who understand this, and are there but aren't pushy about helping and are cool about our limits and our problems are the best thing ever.
And of course, don't make comments about people with disabilities. Most chronically ill people fall into the category of disabled, and often feel a sort of kinship with the disabled, as their experiences are quite similar. Making that crass comment about someone getting out of a van in a disabled parking spot might hurt your chronically ill friend, since they're not all that far from the same experience. Just be mindful, and you won't end up with your foot in your mouth.
Finally, I want to thank anyone who has read this. It's a long post, with a lot of personal information and a lot of really unpleasant information. Unfortunately, life for chronically ill people, particularly in the US, isn't pleasant, so it is a bit unavoidable.
Thank you for taking the time to try and understand what's happening to us here.
