Adult Type 1


(CathyT) #1

I was diagnosed in 2014 with Type 1. I was 54. My sugar levels are always a roller coaster. I HATE it when my sugars drop. I’ve had 3 seizures because of it. Now, I’m looking for another job, but I’m so anxious getting out of the house as I’m so afraid I will have another seizure. Panic attacks from it. I keep my glucose tabs with me all the time, but the last two seizures hit me so fast. I now have orange juice close by. I’ve seen a therapist for my depression with this disease. And I’ve gained so much weight from the insulin. I don’t eat a lot at all. I have no food cravings. I feel like I’m fat and sick. It’s a helpless feeling. I have an appointment with the endrocrinologist next month, but the doctor’s office just seems to go by the book and doesn’t help with my emotional state. I’ve even thought about cutting way back on my insulin so I can lose weight. I know that’s not good, but being 57 now, I’m getting to the point where I don’t care anymore. I may be in denial, but I want my life back. I haven’t had a day since being diagnosed where I feel “good.” I truly feel good when my sugars are high. I’m just sick of it. My husband is so worried (as he’s witnessed 2 of my seizures) and worries about me going anywhere by myself. At my age, I’m wondering how long it will take (not taking my insulin) for the disease to really damage my kidneys, heart, etc. I realize being 57, I don’t have that many years to live. And am thinking – if it will take years for the damage to be done, why not enjoy my life now.

Cathy


(erinmpoche) #2

Hi Cathy,
So sorry to hear that you are going through this rough spell. I am a mother of a type 1 teenager so I can’t relate to how you feel, but I know how challenging and frightening it can be. First off I would schedule an appointment with a primary care physician to make sure that there are no other possible reasons for the weight gain/depression. I know the thyroid can sometimes be the case. Also check with them to see if they know of any support groups in the area. The ADA or JDRF might have groups where you can get involved. I would also shop around for another endocrinologist, one that is supportive of your emotional state. If you can get a CGM that might help stabilize your blood sugar - I know with my son, he feels so bad when he’s both high and low. Look for online help and encouraging books to help you through this slump. I know it feels like you are the only one out there dealing with this but you are not! Don’t give up, you can do this! I know when you start feeling better physically, emotionally will follow. Good luck to you.
Erin mp


(karenchq) #3

Cathy,

I would also suggest the cgm (continuous glucose monitor), it has made a big impact on my management. There is a graph where you can see your trends which gives a more informative picture of what is going on than an occassional BS test. Please make sure your endo clearly understands if you are unaware of impending lows as this is extremly risky for you to go so low as to have a seizure.

I am 51 years old (diagnosed at 50) and for me, it was a bit of a shock to get my body back in a normal BS range as I had been high for so long. Now, things are calming down as I learn more about how foods, exercise, sickness etc affect me. I had a lot of bad lows too and the cgm has greatly improved my management by alerting me when I am going too high or low. Sometimes, when I am low, I don’t think correctly and can not make decisions on what I need to do, but my husband and friends will hear the cgm go off and know how to help me. It was difficult to get, but worth it.

Depression and diabetes is not a good combination and unfortunately many of us suffer with the weight of both. Please do try to locate a therapist who can help asses if you could benefit with medication and therapy. Additionally, continue to post and know that I care for your well being even though I don’t know you. We are hear to listen and encourage each other through hard times and celebrate our successes.

Kind regards,
Karen


(ksmerk12) #4

First, you will get very sick very quickly if you stop taking insulin–you will go into DKA. It may not damage your kidneys and such the way you are thinking, but you will be physically very ill and most definitely will not feel better. Please don’t do this to yourself. You will definitely not be “enjoying life now” in that state.

Second, seizures from lows can happen to any diabetic and paramedics see them frequently. I’ve been diabetic for over 30 years and had seizures growing up anywhere from 1-3 times a year (D management was a different ball game back then, that’s for sure…). You can learn from the mistakes that caused them, but please don’t live your life constantly in fear of them. I’ve been seizure-free for 15 years now, and one day you could likely say the same. If you are unable or unwilling to get a CGM as the others mentioned, frequent blood sugar checks are just as good at identifying patters and problems that can be corrected to prevent highs and lows. Test before you eat or exercise, and again 2 hours later–then try to determine why your “after” reading is what it is. Did you take enough insulin to cover the carbs you ate, or too much? Did you exercise after skipping a meal and go too low? Or any other number of things that could have happened. Use that information to improve going forward. Keep collecting data and analyzing it as needed. And, please make sure those around you know that you have type 1 diabetes (such as coworkers) so that if something should happen they can inform first responders of your condition.

Remember, blood sugar readings are not good or bad–they are simply a data point that tells you how to move forward from there.


(csn1) #5

Hey Cathy. I was diagnosed at 40 (3 years ago) and have since run 10Ks, done triathlons, biked 100 miles with fellow JDRF folks and also continued to travel. I say this not to boast (as they have not been without some fear and plenty of tough moments) but to let you know that anything you want to do is more than possible, but it’s hard work. I had my first ER visit last night due to a low in 3 years (after a 50 mile ride). Unpleasant and not cool, but I have taken some notes, will make some adjustments and will keep going. I wish you the best and please know that there are many resources out there. Please consider riding in one of the JDRF rides…great way to connect with others like you, get some exercise and fresh air and raise some $$ for your own health. I hope to see you in LaCrosse.


(ksims) #6

Hi Cathy,

I was diagnosed at age 41 when my children were 4 and 6, and it was extremely challenging. Managing your diabetes won’t always feel totally consuming and you’ll learn to live a “normal” life again…I promise! I recommend finding a good endocrinologist, one you feel comfortable conversing with and who shows compassion. The CGM devise which takes an approximate measure of your blood sugar level every 5 minutes can be a great help in keeping you from going both very high and very low (because you can treat the problem before it gets out of hand). It will show you patterns that can help you learn how your body reacts to various foods and levels of exercise. I’d also recommend a book titled, “think like a pancreas” by Gary Scheiner, MS, CDE. Don’t despair and DON’T stop using insulin, but DO find your support group!


(heathmac88) #7

Cathy, I was diagnosed at 29 and have struggled with depression and obesity since then (now 48). I am NOT a medical professional but I would suggest talking with your doctor about anti depressants. They are not a cure all, they HELP. Please do not stop taking your insulin. Do you have a loud/tough friend or family member who could go to appointments with you? If you are not able to advocate for yourself, maybe they could. We with Diabetes have the right to live and be happy. Please don’t give up.

Side note, I don’t call myself a Diabetic; I try not to let Diabetes define who/what I am. I say I have Diabetes. People with other illnesses don’t say “I’m a Cancer, I’m an MS, I’m an HIV, I’m a Crones Disease.” These are all illnesses people HAVE; they are not defined by them. Yet so often I hear medical personel say “Person X IS a Diabetic”. Diabetes is NOT what I am and it isn’t what you are.

I hope you are ok. If you want to message me, please do!