Long time and rough road

Hi, I have been insulin dependent for over 30 years now, and it has been a long rough road. I got gestinational diabetes with my first pregnancy. For the onset I was told "it will go away when the baby is born" Ya they lied!!! At that time I was told the odds of keeping the diabetes was something like 1 in 7.4 million, guess what, I won that lottery-I kept it. I was diagnosed with "brittle" diabetes and told I would be lucky to see 40. So needless to say I was angry, frustrated, pissed off, hurt and in complete denial. The denial lasted for years, I did what I wanted, ate what I wanted, skipped insulin, meals, testing and basically did everything I shouldn't have done. It ended m marriage (cause I let it) I had a very difficult time raising my two children alone. My son ended up going with his dad when we separated and my daughter to my parents, 2 years after we separated. Although I saw my daughter and spoke to her all the time, I can never get back the childhood memories most mothers have. I couldn't look after myself let alone my kids. It took me nearly 25years and a lot of losses to finally grow up and accept my condition. I have had more lows then I could even begin to count and have been in more hospital emergency room and ICU then I care to remember. I ended up on disability insurance cause I couldn't function at work any longer and lost my licence for 10 years after passing out while driving, thank god I didn't kill or hurt anyone. So now at 49 I suffer the consequences of my actions when I was younger and my lack of looking after my diabetes. Today I have had 3 femeral bypass surgeries since Oct/08 along with having 3 huge scars down my front chest and stomach area from the removal of blood clots which they found when they did the femeral bypasses. I have Peripheral Artery Disease, Hypothroidism, Neuropathy in my hands, feet and legs so bad I have to take morphine, I have Autonomic Neuropathy in my digestive tract and bowels. And will end up on TPN (Total Parenteral Nutrition) through a PICC line to start in the near future. What I would give today to go back 30 years and ask questions, learn about Diabetes, get therpy or at least talk to someone about my feelings, learn to accept my condition and not be in the position I am today. Of course I was the  one that nothing was going to happen to---boy was I wrong. I now have a wonderful husband who it breaks my heart everytime when I see the worry and stress he lives with everyday. I have a broken relationship with my daughter cause she has so much anger towards me for her staying with my parents, I have a wonderful new little Grandson and it is for him that I have made very drastic changes in my life for. I want to give him what I was unable to give my children. I want to be a Grandmother who will be here for a very long time. I had no idea where to post this but I have spent a lot time reading post in different groups here and I hope that maybe my post will help someone. I still get day when I want to throw my insulin against the wall and get rid of diabetes but after all i have been though I am truly grateful to be here at all. The complications will happen if you do not look after yourself and when they start there is no going back. Please Please Please take care of yourself. Talk to someone, anyone if you have having trouble accepting it or dealing with diabetes it will be the greatest gift you will give yourself. Include your family and friends in your care if they want to be. There are so many new discoveries alll the time and one day they will find a cure, we just have to hope. I have vented enough but I hope that someone will benefit from my post. I will you all well!

 

Wow, talk about a tear-jerker! I completely understand your story. I am 26, have had diabetes for 20 years now, 13 of which I was in complete denial and did the absolute minimum so I wasn't sick or dead the next morning. I am so incredibly fortunate that my only real complication is stage 2 retinopathy, thus far. I prayed and prayed for healing, but obviously God had other plans for me. I have turned all the bad around for the good of helping others and being more of a humble person. I kick myself all the time for not taking care of myself through the years. I was so immature and so STUPID! It's really not that hard to do. I just continue to pray that God keeps his hands on me that I have no further complications. I'm too young to break down now. My husband is like yours, so patient and caring. It kills me when I see him worry, or see how my poor decisions are and can affect him. But I must say, he is my biggest support! He always encourages me to do better. He has shown me that there is a purpose to my life and I have lots of worth. Make sure you remember that as well! It is NEVER too late to change for the better!

I think it is so crutially important for people like us to tell our story, make it real to those who are facing the struggels we once had. They need to hear it actually can and will happen to them if they don't chose a better life for themselves. I know that I still have so much to learn, but for now, I have made it my goal to share my story as well and to help mentor those who are weak and struggling.

Good luck to you, keep your chin up and continue praying for guidance and healing. I'll keep you in my prayers.

I empathize and sympathize with your dilemma. I have had a rough road as well, but have been fortunate enough to not have but some minor changes in my body. I have been type 1 for over 40 years and being a teen in the 70s, I partied like a rock star. I did drugs and drank, I checked my sugars, maybe once or twice a week. At 15, I went into ketoacidosis 3 times over that summer break from school. I was told if I didn't change my ways, I would not see 18.I am now 49 and my body is feeling the abuse I put it thru as a youngster. I have had a guardian angel protecting me and I also believe that because I was a very active person, I played sports and rode a bicycle, I have not developed any common complications, yet.

I am a divorced dad and raising my 2 younger sons by myself. I have to keep watch of my BS. I don't want to endanger or put my kids thru anything traumatic. They are my world and they know how to handle my lows. My 5 year old knows to call 911 and knows to get me juice or my insta glucose. I am studying to be a medical assistant and I want to become a diabetic educator. I feel I can offer new diabetics some insight and support. I believe the more we talk about our disease, the more people will know and not be so afraid of our condition.

All of us need to teach and learn all that is available about our disease. We need to have hope and pray that a cure will be found. Diabetes is running rampant and the world needs to learn about both types and not assume they are immune to this disease.

Keith

Type 1 since 08/1968 and on the pump since 01/2004

Well, I guess you guys knew I needed to connect tonight - there are no accidents.  Anyway, I have adult onset of T1 - happened over New Year's weekend of 1999 when I went into DKA.  About a year after diagnosis, I went on the pump (MiniMed) and now have a CGM.  

Like the rest of you, I was in denial & not the river in Egypt.  Anyway,  I partied, continued smoking cigarettes (quit 2 yrs ago) and ate whatever I wanted - after all I was on a pump.  My HBA1C stayed up in the 8-9 range and now I'm paying for it.  At 51, I've had two coronary artery stents. I have advanced neuropathy and am facing a possible diagnosis of gastropareisis.  

I'm out of denial and trying to do everything I can to manage what I eat and my BGs.  However, with tight control comes the lows and they're killing me!  Today I had two bad ones at work - one right when I got there and another right before lunch.  I will be contacting my endocrinologist but just need to vent tonight.  I don't like for people I work with to know when I'm having one, because then they all hover and try to help.  Despite their good intentions, I just feel worse.  Then, since I'm trying to mask my symptoms, I have to try to function or at least minimize the fact that I can't.  I still feel as though I'm an emotional wreck despite it being nearly 9 hours ago.  Sometimes I just hate this stinkin' disease.  

I want to yell or scream at someone or pound my fists and demand a "do-over" or another body.  Sometimes it just ain't so great being me.

have you tried telling everyone who hovers that its best if they don't? maybe tell someone you trust at work, "come back and check on me in 15 minutes just to make sure i'm okay."

Thank you all for sharing your stories...I'm literally in tears...

I was diagnosed in 1993 at age 7. I am now 25 years old...Words cannot express how frustrating it is to have T1D. Fortunately, I never went through the denial stage, I was just angry...still am. Its such an isolating feeling to have an illness that people dont understand, especially because T2D is shoved down everyone's throats. Doctors dont know how to treat you...nurses think they understand because they were taught the "basics" of it, people dont understand that you can eat what they can, just within moderation, yet they ridicule and embarrass you about what you can and can't consume...

The older I get, the harder it is to deal with...I'm now consistently in insulin resistance, have lost 20 lbs in 2 months due to ridiculously high blood sugar levels...I've always eaten healthy and exercised, but it seems as if nothing is working...its rough...friends and family don't understand that some days its difficult to walk, or do anything for that matter based on my glucose levels...sheesh(sorry for rambling)

Dont worry about rambling... those of us that live this every day can definately relate and attest to feeling the exact same way.  I have had T1D since 1977 at the age of 6 and let me tell you about misunderstanding a disease.  We have come a LONGGGGGG way since then, but I still feel that way sometime.  Just know that you are not alone and this is a safe place to vent, cry, kick, scream and rant and rave all you want.  We've been there and if not will be there too!!  Chin up and dont let this disease oown you... you need to own it.  Getting angry doesnt help much over the long run, but if you get it dialed in and educate yourself to all of the hows, and whys... it helps.     I am still learning alot everyday from other groups of people that have it or are Pareents of Type 1 Diabetics (facebook)  they teach me new things and have hands on experience of how to deal with things in the "real" world and not just what the doctors tell you about.  Good Luck with your journey.  It can be a bumpy road, you just need to know how to navigate it.  Feel free to contact me if you need someone to talk to about this.  Dawn

Is anybody still active in this post? I’m 26 and REALLY need some diabetic friends, some insight from people that have diabetes. Please respond if you see this and I’ll explain my story. Thank you, Kevin.

Hey @kimerese,

It’s still active! Sorry you are needing people right now! Hope you are doing ok!!

Gina