Yep...I’m back (Edward)


(SuperSam101) #1

So I’m mad. I deserve to be mad, because this time it’s gone too far. I was sent into hospital in a spasm because my blood sugar went too low. I started shaking and have now hurt myself…badly. I had a seizure and started shaking. Out of absolute no where. I was just having lunch with my Gran and family and then bang. I wake up unable to move because my muscles are all in spasm. I cannot even stand properly. My back hurts and have had to go to the physiotherapist the past two days. I literally just started school and I can’t even carry my damned school bag. The human body is completely flawed and I want a full refund on mine. Cause obviously mine is completely faulty.


(SuperSam101) #2

I would like to apologize for my upcoming language, as I currently do not posses the vocabulary to explain my frustration. I want the cure. Not in 6 years I want it now. I’ve been living through hell for long enough now and I want out. I don’t …


(Dennis J. Dacey, PWD) #3

Sam @supersam101 your posting has been heavily edited deleting EXTREMELY OFFENSIVE LANGUAGE. further such postings will cause you to be silenced on this site.

Your frustration is understandable - we all want a cure and as you must have seen on here there are millions who have been wanting, contributing to and working for that cure since before you were born.

I invite YOU to contribute to The Cure - the primary goal of this organization.


(SuperSam101) #4

Thought so @Dennis because what better way to hide the truth


(SuperSam101) #5

But could you blame me @Dennis

I am in college (I’m young) and I’ve already begun to worry about seizures. Something I was hoping would only matter if I made it to 80. Apparently it’s a now thing though! Also it feels great when I can’t take my back pack to school because my books are literally too heavy and hurt my back. (Because of the seizure) I cannot even spit my toothpaste out into my sink, it hurts too badly to bend over. The seizure has placed all my muscles in spasm. I cannot run or do any exercise for that matter. So can you blame me for being a little mad. When I referred to my Basic human rights In the edited out part I was referring to the rights to a healthy lifestyle…nothing about this is healthy and happy for me. I want my muscles back (y’now the young ones) not these now knotted ones.


(Dennis J. Dacey, PWD) #6

Sam @supersam101 I understand your frustration.

A suggestion for you is to accept YOUR condition and move ahead taking as good care of yourself as possible and don’t expect someone to come forward with a medical cure for you. Live as best you can with what you are. You have pretty good tools and knowledge to live a fulfilling life.


(SuperSam101) #7

@Dennis yep totally want to live like this forever. Not like I wanted a easy life or anything. Pfft that would be boring.


(joe) #8

@supersam101 hi Edward.

I am very confused.

your choices are to live miserably, or live happy. to sit on the couch and cry, or to get up and do something. those are your choices. pick one.

are you saying you have it more tough than any of us with type 1? is your type 1 worse than mine?

I get frustration, and I get wanting to pick a fight too. This site is based on civility, experience, strength, and hope. let us not fight with one another


(SuperSam101) #9

Yeah I’m not trying to pick a fight. No one else has noticed what I’ve noticed. Where is the money going? Why is it taking so long etc


(joe) #10

it certainly sounds like bait for a fight to me. you’ve had t1 for a year or two and believe me, I know it stinks - look I get the anger and the frustration and the human need to blame… but you are talking in a forum with people who have had to deal with type 1 longer than a year… some of us have had diabetes longer than you’ve been alive.

so in 1979 - there was hope for a cure and that’s the basis for medical professional who told me that a cure was coming, there was similar hope in '60, '59 '49… (do you get it) all the way back to 1921 when the very first people, many of them children, who were diagnosed didn’t die from it within a month.

so just in case your not up with current events, there hasn’t been a ton of “cures” for disease. there’s been advances in vaccines… and the new biological therapy waves are very promising… for a variety of reasons…

We all know that hope wins over despair. Our survival depends on it. I don’t know anyone with diabetes who are holding their breath waiting for a cure, but we tend to be hopeful and we also tend to get on with our lives.

The JDRF has the absolute tiniest of research budgets, compared to the rest of the medical research in general. The fact that any organization is working on diabetes research is commendable, and I choose to do what I can to help rather than throw tantrums that they are not going fast enough for my particular case.

you’re a student. Why don’t you work on diabetes research? It’ll only take a doctorate and a lifetime commitment… .should I direct my latent anger with this disease at you because I “think” you aren’t doing enough? What good would that do me? Does that even make sense?

It is always helpful to get involved and do something, rather than to sit helpless on the sidelines and complain. Spread awareness, and yes, if you can do nothing else, support anyone who is working on research. You don’t have to trust me, but it’s worked for many people who have felt helpless.


(rvedt82) #11

Hi there,

I’m sorry to hear about your seizure and how frustrated you’ve been lately. Diabetes isn’t exactly a fun disease but I don’t think it’s the worst out there either.
I agree with prior postings responding to you that taking control of things (as best you can) will hopefully give you a better sense of what you can do to live the fullest life possible. Find something that will help you deal with frustrations in a positive way. A hobby, exercise, a journal, etc. or therapy if need be. When I was younger I was frustrated at what was taking so long to find a cure. Now I just try to make the best of it with the advances that have been made and appreciate what I do have in my life. This disease will prove how resiliant of a person you are. Take things day by day with your sugars, try to find patterns based on your diet and activity levels, and recognize it’s okay if your numbers aren’t always perfect. I’m going on 30 years with this disease and I’m still adjusting insulin doses, and what not. The majority of people have something they have to cope with in life, whether it’s a health condition, financial situation, family issue, etc. You might not have perfect control over everything going on in your body but you do have control over how you approach things, you know what I mean? I wish you a speedy recovery after your seizure and hope your body recovers so you can get back on track with where you were at before. Don’t hesitate to ask questions to people on this site. People are very supportive and can offer solid advice.

Take Care,

Racheael


(Dennis J. Dacey, PWD) #12

So well said Rachael @rvedt82 and @joe; sure we all want a cure and want that cure today, not tomorrow.

Will we ever see a cure? I certainly don’t know and I’ve been wanting one for more than 60 years while living a full, active life while living with diabetes. But we will never see a “cure” if we just sit back, complain and tell the other guy “you gotta do this for ME”.

Yes, we, every one of us must work, work hard to bring about that cure that has been evading those of us living with diabetes for well over 3,000 years - yeah, a long, long time. How do we do that? Sharing some of our limited financial resources with those [scientists] trying to find that cure, working as a volunteer raising funds and also educating others especially newly diagnosed and most importantly donating our bodies for use with potential cures. YEAH, sacrifice your body to science.

Frightening, YES. I personally have participated in many “groundbreaking” experiments that have made life bearable and “easy” to live with diabetes - some of the trials bottomed out while others proved beneficial. Interesting while reading many posts here i see people with T1 “bragging” about the marvelous tools they currently enjoy every day - several of those were dreams when I volunteered to use them, and some of trials for which I volunteered were absolutely scary - but I did it with hopes of finding that evasive cure - I hope that cure is soon dropped in your lap.

Insulin is NOT a cure, but who besides me held a party on Tuesday? Yes, Tuesday January 23, 2018 was the 96th anniversary of the first insulin injection given to a human with diabetes.


(wadawabbit) #13

Hey there Edward. I’m so sorry to hear about what happened. Have you talked with your doctor about getting a Continuous Glucose Monitor? It could help you keep your eye on your numbers before they drop so dangerously low.


(SuperSam101) #14

I have a constant glucose monitoring sensor already. It’s great, but huge!

Can you blame me for being mad? I can’t go running and going to college is painful. I can sit up straight because it hurts too much. @Dennis @wadawabbit


(wadawabbit) #15

So sorry to hear that, @Dennis. Which brand do you have? I use Dexcom’s and the sensor is about 1-1/4"x3/4" not counting the tape. You may find certain locations are more comfortable than others.


(jennagrant) #16

When I was in college I was mad about diabetes too. It was also when I was in really bad control. Thankfully that didn’t last forever.

As I’ve gotten older I’ve not only survived but decided that living well is the best way to show diabetes doesn’t run my life. My son was born healthy, people are always surprised to know I have D.

You’ll find your way.