Everyone has silent battles within the home. Everyone that knows me knows I am not shy about my past and if you ask I will answer. But what people haven’t asked about lately is why I have been so busy nonstop nor why have I been so "apparently distracted".
I’m not just a caregiver of family and a mother. I am also the glue for my family. That’s not just a responsibility but some really don’t know what it’s like to be in constant triage mindset. Always fixing something because something always comes up. In fact, it happens at least a dozen times a day.
What’s my current struggle? people have asked. So I will answer.
I am currently fighting for my daughter to be genetically tested for MODY because science doesn’t always meet with logic and common sense and frankly I am at wits end with medical professionals and other people who seem to not want to take me seriously.
My Significant Other in September was on the verge of death (in the literal sense) where his body was crashing. After a week of arguing that he needed to go in to the doctor, I finally told him he needed to get on a scale, weigh himself and he needed to convey the number to his doctor whose office was on the phone. 60 lbs nearly lost in a mere 6 weeks. Imagine being invincibly healthy your whole life and almost instantly withering away, all the while simultaneously trying to convince others of “I’m fine”. Symptoms on the extreme. Him in absolute denial that anything at all was wrong. No I’m not dumb. This went against everything I ever knew about the phrase “healthy” and his stubborn personality pushed me beyond the brink of any kind of logic I could emotionally handle. Out of fear to waking up to peeling him off the ground because he had lost all strength to life or anything and how he was walking at all I did not know, I told him that I am taking him in or I am walking away because I could not watch another person in my life wither away because of selfishness and was not going to have my kids see that either. Maybe that sounds cruel but I have seen more death and illness in my lifetime enough for several lifetimes and I had broken to the core after my grandmother died nearly two years ago. So to the car he went and said OKAY let’s go.
Sitting down with the doctor, explaining every last symptom, changes in eating habits and extreme thirst and shaking. They ordered so many tests. They kept asking ARE YOU DOING DRUGS? Almost had me convinced it must be true. I was almost angry but I knew it couldn’t be true and said if that’s what you think then he will do whatever test you want. So they did a full toxicology panel on top of anything else. We were to “hurry up and wait”. I've never seen such a long laboratory list in my entire life. Hurry up to take the lab tests but wait for the results.
Our relationship being tested I admit I was not in one of my finer moments, but someone had to hold down the fort and demand accountability. We would receive a call that a blood glucose kit would need to be picked up but given no instructions of what to do or why. Having a glucose kit for myself for my random fits of hypoglycemia after stress, I knew what that meant in general, but I had concerns.
They said give him Lantus? Wtf is Lantus? Okay well this is nothing new to me and I’m used to this, I guess. Syringes and Vials- okay whatever. I asked about regular insulin and they didn’t know what I was talking about. Here a pharmacist said the Doctor wrote FOR DIABETES on the paperwork. This can’t be right, is it? Okay well I guess I need to trust him then. This can’t be that hard, right? Confused and Frustrated at half answers and no answers, my patience was certainly tested. I was angry. That is a rare emotion for me.
When I got home, I tested his blood glucose and he was so high I was severely concerned but I knew that a high blood glucose meant something seriously wrong. To me I wondered how is he not in a coma. How is he walking? How is he even talking? No something is seriously wrong. What have we not been told?
In a moment I’m poking his finger because even Marines can have a fear of needles, but I am thinking no something else is wrong. I asked him to set up his text alerts for his labs as they rolled in we would get the results. We gave him the medication and it would work to help him sleep a little too. Hmmmm nope something is still wrong. This shouldn’t be doing that. He would wake to a text only to realize he had missed 5 calls after 1am. WTF why would the hospital be calling that late? The lab text alert came in and a call then happened. It was the hospital again asking why he hadn’t answered...ummm duhh he was sleeping. Why would he have answered while unconscious?
We would learn his A1C was extremely high but they still wouldn’t say a number, his testing would indicate an emergency situation- still no information and a total runaround response. DAMNIT to the ER we went. We ate something and off we went knowing that an ER meant possible admission. They notified the ER and in we went. His BG level was noted to be so high that legally he couldn’t even consent for treatment, so I had to consent to treatment. Anyone who knows me knows if I am signing my name I am not going anywhere and I will be a thorn in their ass every last waking second of the day.
A doctor would come in and have a talk after over two hours of struggling to getting an IV line and more tests? Omg more tests wtf is going on here. He had to have a urine test again. Then a huge comment was made:
“Sir I’m afraid we are stumped at the moment because all of your drug testing came back negative and your blood glucose alone came back to the point where you shouldn’t be alive at all.” We need to do a few more tests he would say. Okay well the IV line was in, I asked for a Banana Bag since he was seemingly dehydrated and they didn’t want him to eat anything. Ice chips they gave. Someone came in and tried to inject him with something. I refused treatment because they didn’t want to say what they were doing. No the fuck they were not going to inject anything mystery into anyone and they were immediately requested to have security escort them out as a violation of protocol. You never just attempt to inject a person. There’s steps to follow. Scanning a medication, scanning the wristband to assign it to a patient, then scanning the syringe codes or anything else to assign a treatment to a direct patient. Okay, so who the hell was this newbie because um no the fuck they don’t do that shit with me.
The doctor comes in again. In a 20 minute sit down he then explains that his A1C came in at 14.9, his c peptide at less than 1 and some mystery tests waiting while his total Blood Glucose had tested so high that the highest it could read was 675 but they knew it was higher. Again they said, we don’t understand why you aren’t a corpse.
Because of the syringe stunt, I demanded to see the lab paperwork. He happily obliged and asked me to read them and offered to explain each item. No I knew what it all meant. So I ask, is he Type 1? The doctor replied, "he’s developed type 1 of some kind but we are not sure because his testing reflects some odd things that aren’t normal for Type 1 but it doesn’t spell out Type 2 either. We need to give him urgent insulin and bring his sugars down immediately. His pancreas has failed, it isn’t working. Transplants are useless for this type of thing and where people usually think the pancreas does nothing, obviously it does something and we have an Endocrinologist on their way to come look at his labs AND him too if they need. While we are waiting for a bit to have them arrive, can we give him insulin?"
Yes I was thinking, but not by the moron that thought I wouldn’t pursue total protocol control and I visually wanted to see the vials he was using and I would do the dosing per their numbers NOT them as he was tired and was no longer trusting them after what had just happened. He told them, ONLY SHE CAN DO IT. I’m not allowing anyone else to touch me. Doctor said OKAY THAT IS FAIR. So they gave me the vial, the glucose tester and a syringe and told me a scale they wanted to follow. They didn’t realize that I already knew the average scale was on a 30 point scale. So there I was giving him 10 units to start to drop him 300 points and told them to get him something to eat because he would crash hard and pass out if he didn’t have something, even if it was juice.
They hesitated but I would soon be found 100% right. The sugar levels were dropping which were good but it would make him hungry and tired and shaky. But this kind of shaky I would have to explain to him that shaky meant his body for 6 weeks was already in crash and this shaky would mean bringing his body to a normal level and to not be scared but expect some sweating, the need to pee and a possible hunger that would probably give him cotton mouth". He laughed as did the doctor in shock. I was asked why I wasn’t a doctor. The SO turns and says, “you didn’t read my file, did you? When I introduced her I was being a smartass when I said her name was Doctor Mom but in all seriousness that is just what she does. She is a caregiver and this is nothing new for her but she has a way with people.” The nurse would come in with more printouts. The doctor would hand them to me and I would interpret them to him. Here the doctor had placed full faith in me to explain to him what they meant and why it was bad. He wasn’t trusting anyone else. He had to trust me though? I didn’t want that responsibility but someone had to get involved because he wasn’t trusting being thrown into medication without explanation. He was afraid in a way I hadn’t seen before. But I was also finding myself angry because I just don’t understand why it takes a brink of death for anyone to seek help. I guess I’m also just use to others being that way though.
Hours would pass and his blood sugar would get down low enough under 200 and no ketones would be detected in his urine. No ketones at over 675 WTF is that?! We would be released with a new regimen of medication. One type of insulin at night and another anytime he ate anything at all. No matter what he ate, he would have to dose. An immediate appointment with the specialist and his new primary doctor would take place within a week but for the next week he would be living a new lifestyle with pending labs still coming in.
As each new alert text came in, NOTHING MADE SENSE.
No antibodies for ANYTHING but GAD65 only? Okay wth I’m no genius but I know this means something else. I kicked into high research gear, drawing charts on paper, taking notes in chart form, doing research on the antibodies and testing. Everything said NO ON TYPE 2. But everything also said NO ON TYPE 1. Then I would come across something that said with the American Diabetes Research Foundations that something else existed: a. Condition called LADA and 13 different types of something called MODY. Why was this so odd?
About to turn 35 and he had never had a blood glucose issue in his whole life. It was a complete humor in the home that the Corps made him a super soldier that would never get sick and suddenly BAM!
Then I recalled the doctor from the ER had said something- his blood work showed approximately 14 months of spiral downhill in his labs. They wondered what had happened in the past 14 months that was different than anything else before ever endured. We were told “sudden stressors” could cause someones immune system to fail, even just the pancreas.
We needed answers still. Something wasn’t right. Antibodies testing was all awry. What’s wrong here? This isn’t Type 1. It can’t be.
The endocrinologist would soon be the only peace in my mind. We went to the primary followup where they would see his numbers were still ridiculously high at all times. The doctor would adjust accordingly the dosing where for a couple days we would “deal with it”.
To the endocrinologist we went. We sat there being told what a shocker rarity it was to have such extreme symptoms happen so quickly. He would ask me to ask my questions and so I did.
I said my only question is this doc:
“This isn’t type one but obviously he needs Insulin now so are you thinking this is LADA or MODY because the blood work is telling me it is not LADA because he has no antibodies for LADA?”
In shock, she would say, “ I think he has MODY based on all indicators but we won’t know for sure unless We do genetic testing”.
You hear something so big confirmed you think, “hey let’s get to testing then”, right?
Wrong. What I would find out is that most doctors don’t even bother with the genetic testing for MODY because the pancreas has already failed and the same issue would arise- he would forever rely on insulin to live.
But why is this so important? What most Americans today do not realize is that MODY is no joke. Maturity Onset of Diabetes in Youth or JUVENILE DIABETES would be something more common than people think but guess what- it’s genetic which means this passes onto your children.
So September 5, 2018 our lives would change just one more way. The only solution was to acclimate our lives to just one more change.
I am no greenhorn to medical anomaly. In fact, I happen to be of the mindset that when life throws you a lemon, figure out how to not screw up making lemonade out of it to simply just make the best of each day.
This mindset has its downfalls though.
I’m not absent from this blog but simply coping in my new daily routine, finding a new balance in moving forward for yet another issue. People that don’t know me don’t see the rare conditions in my home. My natural instinct is JUST DO IT. I think I have far surpassed the concept over Nike. I don’t mean to discount any of the struggles but to be able to deal with such strong changes thrown at you, someone has to really be a persevering mindset. These kind of catastrophic changes I am convinced could commonly drive anyone to instability but I’m not the panicking type.
I am convinced there are two kinds of people when it comes to catastrophe: those that dive in to figure out what needs to happen and those that say okay what do I do now and freeze up. The former of the two has always been my mindset. The earliest memory I have of doing anything triage mind-wise was the ‘89 Loma Prieta Quake. You don’t have time to really think, you just need to make sure everyone is okay.
Much like the 1989 Quake, September and October were difficult months for me. With MODY, there is NO ONE to blame for the condition. It is genetic. The more time passes, I am convinced that my largest task will be to fight for that genetic testing because we have a child together. This disease is Monogenic. It has a delayed onset and some people may exhibit symptoms as a child without ever actually having the full condition rear its ugly head. I have to wrap my head around the balance of why test vs. why not test. Our child’s health and her future is what matters here. I’m thankful we have what we call our “family team” of doctors. While I am now undergoing testing and evaluation for a possible AutoImmune Disease, everyone else just lives each day the only way we know how. We must do more than survive but for the past few months, that is exactly what we have had to do.
As a result of this condition, MODY, now being a big part of our family, just like any other condition, I am faced with the over-analytical mindset of why does life sustaining medication cost so much.
I looked back at retail values on receipts and my EPIPEN costs $1171, where an Advair costs almost $1600 for a 90 day supply. Insulin of various types and testing strips, lancets, needles and other supplies- they all add up. Inhalers and more. I wrote the White House because Big Pharma is exploiting Americans with lifesaving medications- literally Life versus death. In some countries, these types of medication, they don’t even cost anything. When Americans place more importance on NARCAN and Heroin Overdoses versus Insulin, we have some seriously screwed up priorities. We are promoting drug use versus living a healthy life each day with diseases that we can’t stop but we can manage with daily survival meds. Insulin saves lives. It is just that simple. There is a visible difference between different types of diabetes. There are communities of people I never knew about that more Americans should find. Diabetes is not just about “eating fast food”. In fact, most diabetics actually have their condition not caused by their diet at all. MODY happens in less than 3 percent of all diabetics and there are a dozen different types. More people today have LADA or TYPE 1.5 and have some genetic affect that causes a problem in the body’s organs. Type 1 is a natural failure of the pancreas caused by a ticking time bomb.
Think about this carefully and let it sink in.A niece of a dear friend of mine just died of this condition and there was no detection done due to age. Why do we not test more children for diabetes below the age of 5? Why must the worst symptoms exist before medical doctors act like they care?
We do not encourage and provide for genetic testing to confirm a treatment, but it could change the future generations to come? Because genetic means you can’t change inheritance so most doctors feel you just treat the symptoms if they ever come and “at least you know what to look for in the future”.
Why do we not want life sustaining medications to be provided where things like NARCAN doses are used in epidemic proportions? Illegal drug usage over life? How does that make sense?
Will you be the responder or the bystander?
That is the real question I have found myself with. I am a responder. I triage everything in my life by nature and instinct. It is who I am. It is also part of why I started this blog at all.
I write this segment because I am human just like everyone else. My life is certainly far from perfect and some days I wonder how I haven’t pulled my hair out yet, but I still move forward. Some days I have more direction than others. And Some days I just figure things out like how am I going to replace a sensor on the family vehicle because I hate taking vehicles into the shop if I can do things myself.
When life sustaining meds can change your life, how do you cut costs elsewhere. So many questions arise. The empathy I have learned for others with rare diseases more than my own has been insurmountable these past few months.
I am left with one resolve: there is NO normal. America just has its priorities all fucked up. The average person is a simple survivor on the daily. Most of Congress doesn’t know what it is like to survive today. They have very little to no personal worries. So when I say Congress is out of touch with the average American, these are the average thoughts I speak of. We Americans are not impressing anyone.
With healthcare suffering, America is NOT the greatest country in the world, but we can be again if people wake up to the sad reality of the everyday American in healthcare. Life sustaining measures can become far cheaper.
You don’t have to like Trump to like his new executive order to lift a pharmacist gag. I have already received word that pharmaceutical companies are rolling out lower costs to compete in the market after the Medicare D Gag was lifted by Trump just a couple months ago. For those with life sustaining meds, this could be the beginning to a life changing event.
We have to fight for more of these moments and stop advocating for things like the faulty injection sites and Narcan dosing. Promote living instead of addictions that cause death. Promote positive mental health because anyone with a lifelong disease goes through emotional ups and downs EVERY SINGLE DAY a dozen times over and over again. It doesn’t have to be one extreme or the other, but finding a healthy balance in coping with things that are not anyone’s fault but a simple tragedy of genetics. That seems a bit too oxymoronic and yet I find myself hopeful that most readers actually knew what I meant when you read that just now.
Medical should also mean common sense. But let’s face it. Not all doctors are miracles. I have found a rare few that truly care about their patient’s lives and unfortunately far more that care about numbers on a patient list. Humanity and medicine have to go hand in hand or diseases like MODY win.
Humanity means MODY doesn’t get to win. Or at least it should mean that. In my home, defeat is not an option because either we care about life, or we should care about nothing at all. I know very diabetic can realize the statement I am about to make. Wherever a diabetic struggles to live with the emotional turmoil of their disease, their exists no less than at least one person in their lives that is an ear to listen and a shoulder to cry on. This disease is cruel to the heart and mind. So let me make this simple for you to ponder.
Are they a diabetic? -OR-
Are they just another human being who has diabetes?
Diabetics, not unlike other disease patients are human too. They have their disease associated setbacks- emotional and physical. But, while you rethink your years of set ways regarding the many falsities you may have been indoctrinated with regarding diabetes, I will remind you that while lifestyle changes to fit the disease, every person with diabetes should also understand that their family and loved ones are also impacted by their disease. That sounds selfish, but the many nights I find myself waking to test blood sugars, avoiding Diabetic KetoAcidosis or BG crashes and Ketones, I find my own emotional tolerance tested too.
"This too shall pass" applies only to the momentary feelings I have. Just like my own struggles, it is just one more person in my life with an obstacle. While that seems far more simple, I can assure that it is far more complicated emotionally than it sounds. Because of the many diseases I handle on the daily, with others and with myself as well, watching someone destructive emotionally because life feels a struggle because of failing health becomes the obstacle where I say, I'm sorry you're hurting but you need a professional because I carry many burdens of which none are easy and I too have to carry on somehow. When I say that, I don't intend to sound mean at all.
While he struggles to deal with this disease, I feel more like a single parent home. He's emotionally absent, confounded and a hurting introvert that needs to seek help because I don't think anyone should bypass therapy to cope with something so drastic in their lives.
My oldest is handicapped, my youngest allergic to the sun, my mother permanently disabled because of one incompetent surgeon screwing up what should have been a simple procedure, and then my own health gives me struggles as well. But each day, whether in pain at a 10+ scale or at a 3, everyone else has a day that needs me. That is where I resolve myself. My children need me to be their balance so a new tolerance of pain comes with it to get through the day. Some people joke about medical conditions and all I can say is that if you are someone struggling with your health, emotionally not just physically, please seek help. Your family has to be selfish because without their support physically, your home would likely fall to pieces while you struggle to cope emotionally. It doesn't have to be that way. Seek help.
Diabetes is a selfish disease. I am convinced of that. It takes no prisoners while it destroys lives. It can pour over into the rest of your life before you even realize it. Your support system is there. You have to learn how to let it be there and you have to learn how to cope with it all. Coping is not simply isolated to disease or death, but with life too. We all could benefit by developing better coping skills, myself included. We are human beings after all. Because I am the glue in my family, my day continues like any other day because I don't have the luxury to let it defeat me. Not my own diseases can defeat me, so no one else's can either.
Think about this carefully. What disease in your life has emotionally taken up free rent space in your head?
Raise the rent- kick that negativity out. Your loved ones need you. Your survival depends on it- both emotionally and physically. Diabetes of any kind does not have to win.
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