Hey all, it's been literally years since I've been on here. In all honesty, I'm a little embarrassed it's been so long. I guess this is me screaming for help. =) Guys I have been an absolute wreck for the last 11 years. lol And having kids has just kind of made it easier to ignore.Since I get to focus on them instead of me. =) Which I love, but now am paying for not paying more attention to me. So guys, I am in need of some HUGE help. It's like starting from scratch, the day I was diagnosed. I've NEVER really figured this diabetes stuff out and I've ignored it. No other way to put it. But........now I'm starting to see the consequences of the neglect and it's starting to freak me out. So.......guys, here is an idiot asking for anyone's help. Even though it's a little late. I almost feel like I'm too far gone.lol But I hope I'm wrong. =)
Maleri, please don't get on yourself. There is a plan for all of this and besides most if not all of us have neglected ourselves to take care of someone or something else. It happens. What matters now is what you do going forward.
It might hlep if you try and re-introduce yourself to the people here. If you have been gone as long as you say you have then a lot of people (like myself) have no idea about whether you are T1 or 1.5 or 2. What kind of regime you were/are on without having to leave here to go look at your profile.
Next I want you to take a deep breath and relax. You are amongest friends and we are all willing to listen and to help wherever we can.
Last thing...you can do it!
Thank you very much brokenpole, I am starting to feel better already. Ok, so here is kind of a rundown of the last 11 years. lol I'll try to make it as short as possible. =)
Got diagnosed at 17 in 2001 with Type 1 diabetes. I was down going to college, came home for support hoping to get a handle on it. Got married instead. =) Tried to get a hold of it after I was married, and found it extremely frustrating. I moved so I had a new doctor and I moved to a remote area so we will just say that the medical help was a little less than helpful. In fact they put me on Actos which I found out later is a type 2 drug and I then realized why it hadn't done anything for me. lol So the closest endocrinologist was 2 1/2 hours away. So I went to a regular family doctor who didn't seem to know much about type 1. Two years later I had my first daughter and I found I needed little to no insulin while pregnant with her. However, after she was born, my sugars changed completely, and then changed again after I stopped nursing. So I tried to get it back after my daughter was a little older, then got pregnant with my 2nd daughter 2 years later and this time I couldn't keep my sugars down during my pregnancy. Same thing, sugars changed after I had her and after I stopped nursing. Then I tried to get a handle on it AGAIN. lol Are we seeing a pattern yet? lol =) My doctor gave me a paradigm pump, never really showed me how to use it or set it up or anything though. So....I did the best I could with the knowledge I had, but it wasn't much, and my sugars still were high. So then 2 1/2 years later I had my son and I started the whole sugar war all over again. I then got an omnipod pump, they set up a woman to come and help me get it figured out and get my settings right. After a week of frustration for her and I because my sugars never truly make sense or follow consistent patterns, she stopped returning my phone calls so I stopped using the pump that was too expensive to keep up with anyway. =)Since then, I have done just what it takes to stay alive and that's about it. But now I am starting to see some real symptoms starting to rear their ugly heads and it's concerning to say the least. I'll be honest and say I've given up on trying to figure out what the heck my body needs. I'm not even sure how many units I should be taking for the amount of carbs because it's changed so many times I'm not even sure where to begin. I've had sucky training and education. I'm extremely insulin resistant. I am taking 40 units of Lantus once a day, and I take my Novolog at least once a day but I am never sure how much to give myself so honestly I guess A LOT! I find diabetes to be like Algebra and I really stunk at Algebra. lol Honestly I feel like I have to start at the beginning and learn everything all over again. Good news is though, we're done having kids. lol Now I'd like to live long enough to see them have kids. My exercise consists of chasing my 2 year old and doing the mommy thing. My husband works out of town a lot and so I'm kind of like a single mom sometimes,so I don't have a lot of time.But I'm trying to make more time, it's a work in progress. We aren't rich and struggle just to stay afloat most days, so if there is a secret to being able to afford all your diabetes supplies I'm all ears. =D I know it sounds stupid, but I have a lot of guilt when I have to buy the ridiculously overpriced diabetes supplies for myself because I feel I could be using the money for something my kids need. I know, I know, stupid, but the guilt is still there. My husband and family I think just don't know what to do with me, and are even more clueless than I am about diabetes.They love me, but it's hard for them to be the help I really need, and so I often feel like I'm swimming through dark waters all by myself. I'm starting to work out, even if it's just 20 min during nap time, and I'm trying to select better things to eat, but it's a work in progress. So I appreciate your help brokenpole and any others. =) You are already giving me hope where I didn't have much. =) Hope that gives you a hint of what is going on. lol And........breath. ;)
Hi Maleri, a good book might help to get you started. Gary Scheiner's latest edition of "Think Like a Pancreas" or John Walsh's "Using Insulin" or "Pumping Insulin" are highly recommended on this site. When I was first diagnosed I couldn't find much reading that was helpful, but now with some good books and the critical help of TuD, I feel empowered. Good luck and keep posting.
Thanks Trudy, I will have to look those up. Yes, I've tried to read some diabetes books and it was like reading Latin. lol Thanks for the recommendation.
The first thing is the guilt. Mal I would love to tell you that there is a magic pill for that one. But there ain't one...at least that I have found. I am full of guilt right now myself because I have to start dialysis here really soon. I have already been told my kidney function is critical. I have always kept my A1c less than 7.0. It is usually less than 5 and I have had is down below 5. That was just stupid. I was having nasty lows several times a month. I stocked glucagon like most people stock toilet paper...lol. So my wife put up with all of this and now I have to add dialysis to the mix. If that weren't bad enough we are trying to get custody of our grandson (9) who got taken away from his daddy for abuse and neglect. My daughter lives with us and so they don't consider her a proper candidate for custody. We are afraid that if the state agencies find out that I have to start D2 (dialysis) on top of everything else they will decide we can't have him either and that means he will stay in foster care until he is 18. That is not going to happen.
I worked on the road for 15 years. Lived in apartments all by my lonesome and was always scared to death that I was going to drop and that someone would come looking for me and find me on the floor. It never happened. No idea why but it never did.
You are not alone, Mel. We all have feelings of being inadequate when caring for our own D. We never seem to figure out the right formula to stay stable. Some drops us high or low and we wonder what in the hell is going on. It did me so much good just to find this place that there are others with similar issues.
I was dx's in 1988 with T2. Went from diat, to oral, to insulin in under 10 years. I cannot begin to totatlly understand your travels as a T1. But I am here to listen and to read the advice that someone on here gives you. I might find a golden nugget amongst the comments that helps me.
Keep writing and keep the faith. You can and will get through this.
Sparky
It is never too late. You have come back to rthe place where you can get help. There is no guilt or shame here. When I was told I had diabetes I scoffed at the door no man in my family ever had diabetes. I went on my way addicted to Sweets feeling rotten developed problems developed a severe balance problem. Moved to Florida got a new endo my A1C was 9.5 no fooling around he put me on insulin. I found this site got involved. This site saved my life. My last A1C was 9.5. The past is the past forget it. Start fresh. See an endo find out what is what and go on from there with the knowledge yu have thousands of people here to heko you to support you to let you vent...today is the future live for it. I am 85 years old and if I can do it you can do it. Good Luck to you. Drop in on me anytime. Reed
Hi Maleri. I'll echo the others. Don't bet yourself up for the past. You can't change the past. God knows I would if I could myself. You are doing the right thing now by seeking the help and knowledge needed to fight your battle. You MUST take care of yourself FIRST in order to do the same for your family. And, I think you are wise to look at this as a new beginning. Just go back to basics and learn all you can.
So here's where I add my two cents. Go to Blood Sugar 101.com to get some easy to understand basic information about how your BG works. It is where I started my schooling and was very helpful. The other books are great too, but this site is more basic and free. Once I had a better idea of what I needed to do I tackled my diet. Start out simple and small. Narrow it down to as few carbs as you can and a short list of foods that are predictable for you. Do this until you are comfortable with your results and using insulin. Then begin expanding your menu once things seem to be more in control. In other words, eliminate the variables. Lastly, test, test, test and then test some more. This is the only way to understand how food and life affect your BG.
There you go. Take what you will. This is the process I used to start with. I truly believe that good control and management are all grounded in knowing what to do. Knowledge of D and your body are as important as insulin and your meter.
Work hard and be there for those grand babies. They are a blast.
Maleri, sorry it's been (and is) so tough for you. Kudos for posting, it's a great start!
You've gotten some great feedback. I think the first thing you need to do, while reading some of the great books/site, is test and log, test and log... I don't know how often you're testing now, but the only way to really see clearly what you need (insulin-wise) and how foods/activities have an impact on your BG is to test and log.
Once you've got a week's worth of data, you'll probably be able to see some patterns and be able to start figuring out how your own body works and reacts.
Keep us posted here as you go! As someone said above, you have thousands of people rooting for you, and here to support you.
You are way ahead of me, I didn't get really serious about it until I was 37! It's a big accomplishment to say "ok, I'm going to do this...". I sort of think that running all over the place BG-wise is a lot of work too, but that it's more helpful psychologically to try to succeed? Every number that's off can provide clues about what adjustments to make next time and so on.
I wouldn't feel guilty about taking care of yourself. To paraphrase Fat Freddy and Freewheelin' Frank, mom will get kids through times of no money better than money will get kids through times of no mom!
Hi Malari, I am brokenpole's wife Sharon. I am not a diabetic (I'm hypoglycemic by the glucose test), but I've been on the diabetes roller coaster along time with my sweetheart. Firs questions I have do you have a glucose monitor and know how to use it? The other thing is do you have a Walmart near enough for you to go to? Sparky says meters there can be bought for $9 that use test strips that cost $36 for 100. Do you test yourself more then once a day? I had to keep this short but will write more. Welcome back to TU Diabetes by the way. I am still knew here and meeting people....
We all do the best we can. You need to take care of your kids. I actually didn't start insulin for my worsening type 1.5 for over a year because I couldn't afford it, and tried to control very minimal islet function with no carb diet and lots of generic metformin. Now I have a job that has great insurance and am on a pump...but I know how it is.
I know where you're coming from with this, and when the time comes that you have to take care of your diabetes to be there for your family, you'll do it.
Hi Maleri, First thing is first. Take a deep breath. Relax. Yes, it's super frustrating. yes it's scary. Yes it's the pits! But let's look at a few things you've done already. First, you recognized that it's time to do get on top of. Second, you also have been through some very frustrating experiences that have kept you down, but look... you're standing tall again. You're recognizing that you're in need of help and support. All of these are major brownie points in my book for you!
So what should you do first? My suggestion would be to start testing. Do it at least 4 times a day. Start keeping track of your numbers just four times a day. make it a habit. if you do that today and tomorrow and miss the next day by one or two, don't worry, just go back to 4. As you see your numbers regularly, you'll start to see patterns. And some days won't fit the pattern at all, but first you need to collect the numbers. As you do, you'll start to see patterns that you couldn't see without consistent numbers.
I live in Utah also and would be happy to share a few good places to get some help. Even from a distance, I think they'd be willing to help you out. If nothing else, I can recommend where I go which has been a really great place. I've tried 5 places in the state. this place is by far the best.
Please get in touch with me if you'd like the help. Still though, seems like you are on your way to a great future. Just remember to take a breath and breath. All of us with T1D know what you're going through in one way or another. You aren't alone, but I can tell you are scared and concerned. That's a good thing 'cause it's prompted you to seek some help. That's the first step. :) You done good!
Omg, the responses from you guys are......overwhelming. In such a good way. I wanna cry. Honestly I've felt so sucluded in all of this for so long I'm just so grateful you guys are all here and care about perfect strangers. =) You guys are honestly keeping me going. I appreciate EVERY SINGLE ONE OF YOU! I hope that someday I can return the favor and cheer each of you up somehow at sometime. Thank you for keeping it basic. lol I really appreciate that. It's not so overwhelming.
Brokenpole- I am so sorry for the rough things that are going on in your life. I can't imagine the frustration you must be feeling. And here I am feeling sorry for myself. =) I will pray for you and your little grandson, he's lucky to have you guys. Dialysis is my biggest fear. I hope I can be there for you like you've been there for me. =)Thank you so much.
Seagator- You give me hope. =) Honestly I never thought I would make it 85. I now have great hope. =) You are an inspiration and a great motivator for what I can accomplish. Thank you so much for your caring. I will drop in on you from time to time. =)
Randy- Thank you so much for the website. I will definitely check it out. =)I appreciate your advice and I think that is where I will start. =) I've forgotten so much because I just ignored it for so long, it's nice to hear the basics again. Thank you so much for your encouragement. I am glad you get to enjoy your grand-babies. =D
Jrtpup- You caught me. lol I am terrible at logging. Terrible. But I'm trying to do better. It's all very time consuming right now because I'm trying to get back into the swing of it, but I'm working on it. I hate those little books though. There is never enough room to write everything. My husband teases me because he says I have the best and the biggest handwriting he's ever seen. lol I guess I will have to work on that. lol =D
Acidrock23- I love your quote. I am going to pin that to my fridge. =D If you don't mind me asking, what age were diagnosed with diabetes? I really think being diagnosed as a teenager was super hard. I was just learning how to run my life by myself when I was told I had to change everything I know and follow a strict lifestyle. That was tough. I think that's why I ignored it for so long. Kind of like if I ignored it, it would go away. lol Stupid, but I'm pretty sure that's what I was doing. I'm glad I can look to your example.
Smokinbeaver- I love your screen name by the way. lol Brokenpole is lucky to have you. =) To help him out. My husband is very sweet and caring, but utterly clueless when it comes to my diabetes. I feel for him because I know he would like to protect me from everything and he can't. It's a very frustrating ride for him as well. I do have a glucose meter. I didn't test for a long time because my sugars would frustrate me and make me cry. It seemed like no matter what I did they were either too high or too low. I rarely was just right. But I've been testing more lately, trying to get things figured out again. I'm testing A LOT right now. My arms are speckled with blood spots from poking myself all over. lol But it keeps my fingers from being sore. =) Glad they came out with that one. It was really nice to meet you as well.
Drmom777- It is really nice to hear from another mommy. =) Yes, the money thing has been an issue in the past. I won't lie, there were times that I would go a few days without insulin or anything at all because I was waiting for my husbands paycheck or had to buy diapers. =/ But I would soon after get the leg cramps and so I try really hard not to do that anymore. =) The economy is hard right now and diabetes supplies are so expensive, it stinks. But they kind of have you over a barrel. =) I am thankful that we have good insurance now. =)
Jeffojeda- Thank you so much for your nice message. I would love to hear your recommendations for medical help. That would be very helpful. Thank you for empowering me. I do feel better about myself already. =)Those 3 little words, 'you done good!' made me feel so much brighter and stronger. =) Thank you for that. I can test 4 times a day. =) I will make my goal, I can do it. lol I would appreciate all the help I can get. Thank you so much for caring and again for your kind words.
As I said before, I am so overwhelmed with gratitude for you all. Thank you so much. I feel so much better and ready to go now. I'm still a little intimidated about the work I have ahead of me, but I feel I'm capable of doing it now. =) Thank heavens for all of you. I will keep you all updated on my progress that way I can get tips from you guys and maybe I can figure this out with all of your help. =) After all diabetes is such a complicated disease. It's so different with everyone. So maybe it will sound familiar to some of you. =) Thanks again for all the support. God bless you all. You guys are literally saving my life. =)
Hi Malari. Earlier on here you said that logbooks seemed small, which I found to be true also. I needed to log for a long time after diagnosis. In order to be useful I needed to expand a bit on such things as what I actually ate and what it did to my blood sugar, what kind of exercise and when, etc. I've read some people on here use spreadsheets, but I just ruled off a legal pad, expanding on the same things as the logbooks listed. You said you write in a large hand; I print big; the legal pad helps with that also. You'll find a way that works for you!
Everyone who knows me knows I flunked Typing 101. I type with one ARTHUR RIT IC Finger. My A1C was 9,5 and is now 5.9 If I gad stayed at 9.5 no improvement shown. Reed
Maleri, if you have an android or apple phone, there are tons of apps out there (free) for logging. Just ask and you'll get tons of recommendations.
You said I didn't test for a long time because my sugars would frustrate me and make me cry. I know it's easier said than done, but try to look at the numbers that you don't like as an opportunity to learn something, not as a failure. You can fix it, but it takes time, one step at a time, so any 'off' number gives you more data.
HI Maleri- We are all with you in your quest for better D control. That is what this site is all about -support and info for anyone who needs it. Get rid of the guilt you have for neglecting your D for these years to focus on your children.
Both are important to take care of. Any questions about D that you have will be answered by members here any time ( remember we are in all corners of the world with this site.) Take it slow and learn to take care of yourself. Cat
Malari, Many of us know the guilt. I don't have insurance and hate to buy supplies for myself when we have 6 kids to take care of, some with their own disabilites. My sugar levels are also very unpredictable and I live where specialist are far away. I literally live on mostly protein and veg. just to stay low with meds and insulin. Because of that I struggle to keep weight on. I love to excercise but it usually raises my sugar levels (and I'm too tired all the time) It is exhausting to have diabeties (they say I'm type 1.5) but I love my family more than myself so I try to put aside the guilt and look at it as "if I take care of myself now then I will be around for my family longer and healthier" You can do it!
Hi Malari, I know what you mean with day to day life with young kids making it hard to manage your diabetes. I was diagnosed at 27 and went through a number of years of denial, so busy with work and a young family that it made it very easy to ignore.
Then one day it hit me that my daughter needed me to be there for her and I needed to take care of myself for her. Now, 25 years later, my daughter is in grad school, and I pray that I remain in good health to see and hold any grandchildren that she may one day have.
Use your family as motivation to keep you doing the things we have to do every day with diabetes. You can do this and we can help you. Everyone here knows how hard it can be and they will walk with you through it.
The biggest things that have helped me get control and get more stable are logging everything, testing frequently, and eliminating alot of carbs from my diet. I log in a small notebook that I can stick in my purse and carry with me, and I write down when I don't feel well or have stress at work or if I ate restaurant food (which always throws me for a loop).
Take it one step at a time and as you identify patterns, come back here for help in fixing them. Take care of yourself and your beautiful family. :)