Tag: autoimmune disease

“My Blood Work For Pregnancy Came With Results For an Autoimmune Disease”

“My Blood Work For Pregnancy Came With Results For an Autoimmune Disease”

By: Megan Carlos


Being 27, newly married with an exciting announcement that a baby was on the way, I thought life was right where it needed to be. My husband and I had just purchased a beautiful house on land close to our family with a farm of animals and endless dreams for our future. We both worked in the Art world of Tattooing and freelance Modeling with a new hope to be parents.

I was announced pregnant August 2017 and Type 1 Diabetic September 1st. The most heartbreaking day of my life. With blood work for pregnancy comes results for an autoimmune disease.

As a result of living with an A1C of 15.6, my unborn child could not survive in my body. When this aggressive news hit me all at once, I thought there was no surviving such traumatic news. News turned to facts and facts turned to choices.

I had the choice to take all odds and work hard to gain the strength I needed to survive through what was to come. Depression sank in, anxiety was second nature, loss for hope for a healthy life with a family became more and more apparent. Knowing that I had to relearn how to live with my new physical body, I had to succumb to a new reality that would soon take control of my mental state.

Although the symptoms of normalizing my blood sugars felt like I was fading slowly into a coma everyday, I had to muster up the courage to simply face my day. Normal activity gradually became so challenging that I eventually quit my full time job and moved in with family to help me through such changes. Did I mention the family I moved in with is in Texas and four hours away from my husband?

I felt I lost everything. Here I sit in such an infant manner with no control over what is happening to me.

Injections, no injections. Can I sleep? Should I stay awake? Do I eat this, or that? Call for help while I’m in the shower, had no idea heat makes your blood sugar plummet. Feeling robbed of my once healthy active body, my dignity started to feel obsolete as well.

A desperate measure at one point was had when I tried to leave my husband for reasons of wanting him to move on and be happy. I was so afraid I wasn’t going to progress and give him children that I thought termination of our marriage was viable. I’m here to state that I was wrong. Aside from this disease, there is one more sure thing I have and that is a vow before God that I will be with my husband until death do us part. I am reminded in sickness and in health, he will be there.

Learning more about this disease and reading other peoples’ stories, I find encouragement to be part of the movement that helps someone like me. We all are so uniquely different, yet we all share the same love for ourselves to survive. A cure will be had and I won’t forget the steps I took to overcome those moments when I didn’t know what was going to happen next.


I Am Not My Diagnosis

I am NOT my diagnosis

By: Shaily Parmar


“You don’t look diabetic?”

“Did you eat too much sugar as a kid?”

“So does your sugar stays high or low?”

“Can you eat that?”

“But you’re not even fat!!!?”

“You should try alternate therapy”

“Please don’t do that in front of me!”

“I thought only kids have type 1!” (Seriously?!)

“I don’t know how you puncture yourself several times a day/I could never be a diabetic …”

Like we could make the choice not to have it!!

Being a type 1 diabetic, you must have probably heard one or more of the above things and many more other responses when you tell someone for the first time that you are a diabetic.

I was 21, when I was diagnosed as a type 1 diabetic with a BG of 553. So I have spent more time with my active pancreas than my other type 1 friends who were diagnosed at a much early age. I know it’s a huge amount to take in when you’re newly diagnosed with type 1 diabetes. The memory of the moment of the diagnosis is a profound one. The moment that distinctly sep the past and the future. A choice is made for you without your consent. It’s usually a huge shock and we wonder how we’re going to cope with such life-altering news.

Most of us are misinformed, have little or no idea about this auto-immune disease. It’s not unusual. I, for one, had absolutely no clue about type 1 diabetes prior to being diagnosed. I was hospitalized for a week.

After I was discharged, I tried handling this new world of diets, medications and monitoring blood glucose levels. Life style changes that I made were not so difficult but they were not so straightforward either.

It could be overwhelming and terrifying and naturally one would feel that: ‘Now my life will be limited. This disease will weigh me down’, but fortunately I felt no such hindering emotions.

I don’t know why but from the moment I was diagnosed I accepted the fact that this is happening and I needed to readily accept it to control it before it could control me and my life. I knew this was life’s reality. I had to do what was required and I did. There is no escape, especially not by repeatedly asking, ‘Why me?’

There is denial first, then there is bargaining, then comes acceptance and then finally the peace of acceptance.

The faster you accept it, the easier it becomes to live with it. I wouldn’t say to get over it because you cannot get over it. But yes eventually it becomes easy to carry it with you. We all come to terms with having diabetes in our own way and at our own pace.

There are challenges everyday in living with type 1, injecting yourself with insulin and pricking your fingers to check your blood sugar multiple times a day being the most challenging and painful(yet tolerable). You’ll hear this remark from others from time to time: “How could you do this to yourself every day? I could not.”

But I say, “Yes, you could.” It takes 15 seconds to take one insulin shot. Four times such shots adds to one minute. It takes probably 8 seconds to check blood sugar. Doing it (at least) three times takes 25 seconds. So that sums up to only a minute and half in your entire day.

I think I can manage that because I love my life and want to keep living it.

I know it isn’t just one day. Its going be everyday for the rest of your life until a cure is found. No breaks. No vacations. Wherever you go diabetes will ride along with you. But isn’t your life worth it?

Taking timely insulin shots, eating healthy and following a decent exercise regime should ensure good control; still it is highly possible not to get normal blood sugars. But hey that’s why you’re called a diabetic!

The thing is that even after doing everything right sometimes you won’t get perfect blood sugars. It’s not easy and it’s tricky but don’t be too hard on yourself if you don’t live up to those expectations. Give yourself some room to make mistakes.

Managing diabetes is a huge learning curve. A curve that never stops teaching. So be a constant learner.

Higher the mountain, treacherous the path. There will a lot of blood sugar swings which can and will get your emotions messed up. Don’t get discouraged if things don’t go as you planned.

It is a progression over time. Gather as much knowledge as you can. We are all trying our best and we can’t let diabetes get the best of us. Just remember there are bigger problems than a 4mm needle.

I thought I have got it all sorted out. Eat right (and by eat right I don’t mean give up your favorite food). Count carbs. Take your shot. Check blood sugar. Too high? Take correction dose. Check again. Too low? Have a snack. Be physically active. Don’t take stress. Sleep well. Repeat. Day after day it’s a silent battle. No finish line. So is that it? Sounds simple! But that’s an oversimplification.

It is far more complicated than I could precisely explain because food and taking insulin are few of the hundred other things that affect blood sugar.

The other hundred things play a huge part and they are hard to calculate. Of course we are required to be consistent in our efforts but that doesn’t guarantee a consistency in blood sugars.

I have been a diabetic for almost 5 years now and I am still learning. You change one factor and then there is a whole new curve to learn.  Some good days everything is so smooth and simply a part of routine, like brushing your teeth. And on some not-so-good-days, diabetes is determined to break our spirits. And in days like these, the fear of long term complications haunts us.

Although this fear never quite eludes us. There can be too much negativity and darkness in battling with type 1. Please don’t let one cloud obliterate the whole sky.

Diagnosed with non- preventable, irreversible disease is a life-transforming event. It could take you on a roller coaster of emotions. In the blink of an eye, your life is changed. Your ambitions, desires and priorities need re-adjustment. Those spontaneous plans you used to make, now needs planning ahead and always being primed to avoid the worst simultaneously being prepared if things don’t go as predicted.

Doing the same thing a hundred times and getting different results. Living just like others with school, jobs, and sports but with just a few extra hassles. Looking just like everyone else knowing we are not just like everyone else. Why? Because when diabetes allotted us the task of performing the job of an internal organ, it also gave us adequate strength to be one.

Diabetes gives us tears, yet it also makes us proud of ourselves. If diabetes has given you a huge responsibility, it has also made you mature beyond your age. I have never met an immature diabetic! It scares you but also gives you courage and hope that you’re not alone. Hope that a cure will be found.

Yes, my life has changed. I believe it has changed for better.

I have a wonderful life. A loving family. Amazing doctors and fantastic friends. I have not lost my dreams to diabetes. I have obtained a significant knowledge about diabetes. Education and encouragement are what we need to live longer and better lives. You’re NOT your diagnoses. You’re a fighter. You have a mission and a purpose. And if despite all these, I am here and if I can do it then you can too.

Let me conclude this with a quote from Mary Anne Radmacher, especially for those who are newly diagnosed, and for those who are struggling with diabetes and looking for inspiration-

“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’”

After all, we have tomorrows for a reason!


when it's not the flu - life threatening illness

When It’s Not The Flu: A Life-threatening Illness That Is Commonly Misdiagnosed

It is fairly common when someone becomes thirsty, tired, nauseous, or begins vomiting they’re diagnosed with the flu. While it very may well be the flu, it could also be Type 1 Diabetes and should always be ruled out. Type 1 Diabetes is an autoimmune disease where the immune system attacks the beta cells in the pancreas and therefore can no longer produce insulin.

Type 1 Diabetes isn’t always the first cause that comes to mind because diabetes is thought to be linked to diet and obesity. But Type 1 Diabetes is not a result of lifestyle choices. There is no known cause or cure at this time. But researchers believe genetics and environmental factors can play a role in the onset.

Normally Type 1 Diabetes isn’t considered until the adult or child is severely ill with DKA (diabetic ketoacidosis). Diabetic Ketoacidosis is a toxic condition where the blood sugar levels rise and can’t distribute energy to the cells in the body due to lack of insulin.

For someone that was initially diagnosed with the flu, they would soon notice the symptoms not getting better but progressively worse; over a few days to weeks. However, time is very crucial to begin treatment for diabetes in order to avoid varies complications or death.

Symptoms of Type 1 Diabetes can come on suddenly

There has been many cases where a patient has been sent home with the flu. Without further evaluating if it could possibly be Type 1 Diabetes. A mother of type 1 diabetic (Amy Waddington) shares about her son’s diagnosis and hopes her story can help educate and inform others of Type 1 Diabetes and the symptoms to be aware of.

Mother states: 

“3 years ago he was 13. He was eating and drinking like a typical teenager yet he was fading away. He had energy of a 90 year old man, he was pale, his eyes were sunken in, his clothes were hanging off his bony body because he had lost about 15 pounds. We took him to his pediatrician, desperately wanting answers. We were told to “bring him back next week if he still wasn’t feeling well.”

“Two days later, my dear friend came over. She looked at my son and instantly started sobbing. It was then when I realized I wasn’t waiting until next week. I quickly took him to the emergency room. The triage nurse took one look at him and asked me if he was diabetic. Of course I said no. She said she smelled a fruity odor on his breath. I wasn’t really sure what she meant by that. She immediately rushed us to the back…within seconds of getting there they were pumping insulin into his failing body. I felt like I was watching the show ER…it was so scary.”

not the flu - type 1 diabetes symptoms“I did not know then, what I know now. We could of lost our son that night, or that weekend had we not taken him to the hospital when we did. His body was starving for insulin. His pancreas was no longer producing it. One more day without insulin and our story could be different. I believe God used my friend to spare my son’s life and he is now using us to share our story & educate people about this horrible disease.”

If you or your child are experiencing these symptoms, consult with your physician immediately for further testing.

All it takes is a simple blood glucose test that takes 2 seconds to rule out diabetes. To have an accurate diagnosis of Type 1 diabetes a test for the diabetes-related (islet) autoantibodies is necessary. Once starting insulin therapy, monitoring blood glucose levels, and consulting regularly with an endocrinologist; Type 1 Diabetes can be well managed.

“The misdiagnosis of type 1 diabetes is on the rise. Educate yourself, your family and your friends on the signs and symptoms of type 1 diabetes as minutes make all the difference.” –Dancing4Diabetes

For more information on Type 1 Diabetes:

http://www.jdrf.org/about/about-type-1-diabetes-t1d/

https://beyondtype1.org/what-is-t1d/

http://www.diabetes.org/living-with-diabetes/recently-diagnosed/

How My Other Illnesses Helped Me Accept My Type 1

How My Other Illnesses Helped Me Accept My Type 1

Blog: Love, Light, and Insulin


It took me 10 years to truly accept that I have Type 1 Diabetes. I know, that sounds impossible, but it really did. My mom was diagnosed with Type 1 Diabetes at the age of 8. So I grew up in a Type 1 household. Our family didn’t need to be taught fresh. We already lived surrounded by needles, meters, and glucose tabs.

I was 12 when I was diagnosed. Just entering high school.

I have no dramatic diagnosis story because with my mom’s knowledge we actually caught it early. It was a full year until my pancreas completely stopped making insulin.

12 is a strange age. I was just entering high school. I was an awkward tween with braces. I just wanted people to like me, but I didn’t even know who I was yet. So I kind of just pushed my Diabetes to the side. It’s not that I completely ignored it, but I just dealt with it without having any sort of grieving process. I followed along with what my mom did and continued with life, hiding in the bathroom at school to give my insulin, and pretended it wasn’t a big deal.

Then at 20 I was hit with a mystery illness.

I was in school for professional photography and I just felt awful every day. My legs started to feel like lead when I walked. The trek from my suburb to school downtown began to feel nearly impossible. I developed a wide gait and walking, something that used to be so natural, became difficult. That was the last time I was in school. At this point I had been to my doctor and she had asked me if I was depressed… if my Diabetes was under control… if I was exercising, because all my tests were coming back normal.

Next came scarier and stranger issues. I had stroke-like episodes. I started going into urinary retention. My gastrointestinal problems that I’d always had became more severe. I was lightheaded and nauseous standing up. It just felt like my body was falling apart.

And it was a uphill battle to get doctors to believe me and take me seriously. In the meantime, I was not well at all, and the realization hit me that having Type 1 wasn’t no big deal. It hit me that this disease was just as important, and just as scary and serious as all these other issues I was dealing with. It was a big deal and a complete full time job. One that I couldn’t forget to do when I wasn’t feeling well. One that I had to keep in good control to prove to my doctors that I was a compliant patient. One that was even harder to care for than some of my other issues.

So while I didn’t know what was wrong with me in every other way… I knew I had Type 1 Diabetes.

This is when I started venturing into the Diabetes Online Community. Talking to all these people who got it was such a miracle for me. From there, I found the whole chronic illness community, and both of them together helped to get me through all the years of the unknown. I found others who had both Type 1 and other unrelated illnesses. I wasn’t alone and I wasn’t the only one going through all this.

And then some tests started to come back positive. Through urodynamics I was diagnosed with Bladder Sphincter Dyssynergia, a form of Neurogenic Bladder. Through a Sitz Marker study I was diagnosed with slow intestinal motility. Through a tilt table test I was diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTS for short.

But my walking and balance problems were still a mystery. I had about 4 neurologists tell me I had conversion disorder but kept fighting, because I knew that wasn’t right. There so many tears shed after appointments, so many let downs. So many medical professionals who just didn’t take me seriously. Until this year.

My neurologist (one who had previously thought I had conversion disorder), called and asked me to come in and discuss some results. She told me that she thinks I have Stiff Person Syndrome, a literal one in a million disease, and started me on treatment. Stiff Person Syndrome is a rare neurological autoimmune disease that you can probably guess from the name, causes progressive stiffness and muscle spasms. So I don’t know what my future holds. I don’t know how much worse things could get or how quickly.

So right now I’m trying to live out my life the best I can with a disability.

I’m trying to go out of my comfort zone and go on adventures. And now, I can take a step back from this 5 year search for answers and breathe the biggest sigh of relief. Because although having a debilitating, progressive illness is no fun, I would rather know than not know.

Fun fact: Though Stiff Person Syndrome is thought to occur in fewer than one million people, 60% of people who do have Stiff Person Syndrome have Type 1 Diabetes.

And if I had any advice, it would be that you know your body best. Be your own advocate. Let your voice be heard and let it be strong. Don’t let the sounds from others get in the way. You are always stronger than you think you are.


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Diabetes Won't Stop Me From Living

Diabetes Won’t Stop Me From Living

Diabetes Won’t Stop Me From Living

By: Nickie Eckes

I have type one diabetes. I was diagnosed back in February of 1990, at 5 years old, because my body decided it wanted to wage war upon itself and destroy the beta cells in my pancreas.

I remember going to the hospital, and I remember being terrified and having no idea why all these doctors were “torturing” me. I just wanted to go home with my mom, dad, and brother. They said my blood sugar was over 1000 and I had to stay.

The weeks that followed in the hospital were not fun. I had gotten used to getting up and playing and running on stop. Now I was being told I had to live on a strict schedule, only able to eat a certain amount of food at certain times, along with a shot of insulin to ensure that my blood glucose levels were maintained.

They also informed my parents of a place called Camp Sioux, a camp for kids living with diabetes to go and have a “regular” camp experience, but also learn about diabetes. I loved going and it made me feel not alone because everyone was diabetic, and I made some lifelong friends. The type that understands me when I just need “a minute” or “a snack” and understand all those diabetic jokes that make my stomach hurt from laughter.

I’ve dealt with the highs and the lows of this disease now for over 27 years. I’ve handled people telling me if only I would take better care of myself, I wouldn’t be this sick. I did nothing wrong to get this illness, it’s an autoimmune condition. My body can’t make the hormone insulin, which is what is needed for the simple sugars you get from food to enter your cells for energy.

I have to calculate everything I do in a day, from what I eat, to how much I’m going to be moving, along with stress levels and illness (such as common cold or the flu) just to ensure that my blood glucose level stays within a good range and I don’t pass out due to a low blood sugar, or go so high that I get diabetic ketoacidosis (meaning your body is producing a thing called ketones and those can make you very sick). And what works one day may not work the same the next day.

I had the years of rebellion and not caring what my numbers were. I did the whole I’m gonna die young anyway so who cares. And then I decided, I wasn’t going to let this disease keep me down. My friend calls diabetes livebetes because he says “it won’t stop me from living!”

 

Research has made many amazing developments since then, so much now that newly diagnosed people are being told that not much in their lives has to change; they just need to know where their numbers are and how much insulin flow take for those different numbers. We can even program those numbers into a pump and have it do the dosing for us (although not completely without thought from us).

We now have faster acting insulins that instead of having to wait 30 minutes after taking them to even start eating, we now only have to wait 5 minutes. We have what is called a Continuous Glucose Monitoring system (or CGM for short) that can tell us our levels every five minutes, which helps a lot given it can predict a high or a low before they occur, and we can correct the issue before it becomes an issue.

In fact this year, with any luck, I will get to obtain the new diabetes pump, with the first ever closed loop system on it! Both my doctor (who is also diabetic) and I are rather excited for this and are not so patiently waiting. There’s still always planning and calculating everything. It helps, but it’s not a cure. All of these advancements sound amazing and are fantastic, but it’s still a heavy load to carry.

Diabetes Won’t Stop Me From Living

I will keep fighting. I am strong. I hope to one day be able to say “I used to have diabetes.” And because of all this, I remind myself while I may have diabetes, it does NOT have me.


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