Young Type 1 moms

Type 1 and LADA
1

I’m new to this sight, and I am hoping for some insight. I was just curious how young type one moms deal?
I have been type one for 8 years and I still feel as clueless as the day I was diagnoised. I am still so confused. I have been “hanging on” for the entire 8 years with never any control really. I got a pump about 4 years ago and even then, it hardly helped cuz I had no idea what to do with the stupid thing.
I’ve been married for 7 years in July and have two beautiful little girls, that by the grace of God were perfect despite my lack of sugar control. I find myself having a hard time keeping up with them, my husband, life, and myself. I feel overwhelmed and exhausted all the time. My family deserves more from me. I am just now to the point, at 25 years old, that I’m tired of surviving and want a better quality of life. Problem is…how do you do that.
I have gone to doctor after doctor and I still feel completely incompetent. They either lecture on how horrible I’m doing, or they try to scoot me out the door asap. I don’t have much faith in that department anymore. Not to mention that the only endocrinoligists around are an hour and a half away at the closest. So here are my questions: (sorry there is a lot)

  1. With the economy being the shape it is, we are struggling finacially like a lot of people. I would like to eat healthier, but face it, mac and cheese and hotdogs are cheaper? How do you guys afford it. Also we live in a tiny town with one grocery store that is marked way up because of lack of competition. The closest Walmart even, is 45 minutes away. Not to mention, paying for test strips, insulin (even with insurance), pump supplies, etc? How do you afford to be diabetic, cuz I’m going to be honest. I have a hard time wanting to go out and pay $100 bucks on test strips when my babies need clothes or milk, or anything else. I feel completly selfish. I can’t do that knowing they’re going without.
  2. How the hell do you count carbs in casseroles, or anything else you make homemade? Where’s the label?
  3. Where do you find the time to take care of yourself with a family to raise?
  4. I also, have thyroid disease (I feel a little like pandoras box), does anyone else have a hard time getting rid of the baby belly? I’m on synthroid and they say it’s suppose to make you feel better, but it doesn’t me.
    Sorry if this sounds super whiny, but I’ve just about had it. I’m tired of feeling like I’m 95, when I’m 25. If anyone has any helpful advice, it would be greatly appreciated. Wishing you all health and happiness.
2

Maleri,

I am so sorry to hear you are having such a hard time.

  1. I wish I had a good answer your question about how to afford supplies, but all I can do is suggest you call the Social Service department in your local hospital and ask to speak to a social worker and explain that you have Type 1 and are having difficulty affording your supplies. Perhaps they can hook you up with one of the programs that helps people who require medical supplies to stay alive. Type 1 falls into that category. Don’t give up if the first person you talk to is a jerk. Call the larger hospital in your region if you can’t get local help and eventually you may find someone who can help.

Your kids NEED you to stay healthy, so you do need to find out how to get strips and your insulin in ways that don’t keep them from getting food.
Meanwhile, eggs are low carb and very healthy and not too expensive. You can mix up frozen vegetables and eggs into frittatas that won’t raise blood sugar and are really good for the whole family. I live in a small town 40 minutes from Wal-mart, but our supermarkets always have some meat on sale and if you buy whatever is on sale, you can usually find some meat that you can afford for the family. In our region hamburger is much more expensive than much nicer meats on sale. If you have a crockpot, you can buy just about any meat, stick it in the pot, add some frozen veggies about half an hour before it is done and have a nice pot of food. Beans are a good choice to go with not much meat.

  1. How you figure out what is in your homecooked food is easy: Use Fitday.com (it is free, online) and use the feature that lets you create your own recipes out of ingredients.

Alternatively you get a nutrition count book from your library and look up the ingredients you use and do it by hand. It helps to weigh ingredients because unless you know the actual portion size, it is tough to get counts right. But if money is tight the food scale will have to wait. Maybe you can get someone to send you one as a present. But with a food scale and something that calculates nutritional values you can come in very close on carbs.

  1. The part about being exhausted and brunt out and having no time to take care of yourself is a problem for all moms with 2 little kids, with or without diabetes. I have experienced it myself Pretty much all I can tell you is that they do grow up and if you can just get through a couple more years it will be much much easier. But I remember feeling very overwhelmed when I had a 4 year old and a 1 year old and feeling like it would never end. It did and when they were a couple years older I had some of the happiest years of my life.

  2. Can’t help you with thyroid disease. But lots of us end up with a certain amount of baby tummy that we just have to live with. The media make us feel like we shouldn’t but they are also trying to sell us a lot of products and plastic surgery. Anyone who judges a woman who has had two children by the standards of a surgeried Hollywood starlet is an imbecile and does not belong in your life. (Gee, do I feel strongly about that or what??? )

Hope this helps. Hang in there!

3

Thanks so much Jenny. I appreciate your support truly and I will look into those things. Anything to make it easier, And I agree with you on the Hollywood stuff. =) Hope you are well.

4

Hi Maleri.
It is tough being a mom and on diabetes… especially if it is compounded by money issues…and I have often felt the same way. I become a diabetic with the birth of my first child, he is 18 now and ready to take off for college.

I would like to suggest two things. First, concentrate on one small simple goals and don’t keep focusing on the overwhelming mound of issues… little steps leads to a journey of successes and Second, have your thyroid checked. I have a hypothyroid and I know when it is out of whack it effects, my energy, my mental attitude, general health, the ability to concentrate… The thyroid is a really important our general and long term health, if your thyroid his ok. Then there is nothing like support, be here on this site, or through your church or the neighbor next door. It helps you put things into perspective better when you can bounce ideas and frustrations about your diabetes with other. I know that has always been a big help to me. And never feel bad about spending money to keep you healthy, taking care of yourself in turn gives you the ability to take better care of your family. Good luck!

5

Maleri,
I am in pretty much the same boat you are in. I am 33, have been diabetic for 22 years. I have 2 small children. One will be 4 this month and one will be 6 months in a few days. I never get enough rest, I am usually testy, and always feel like if I could just get a small break for me I would be better. In my experience, small things help. Like when the kiddos get to bed at night, I take a long hot bubble bath. The one thing that I suggest above all else is finding a relationship with Jesus. He can help you through more than anyone else and yes that comes from experience for me too. I depend on Him for everything. Find a good church home and in that church home you should find lots of help and support. I depend on the members of my church for support in more ways than one. As far as your testing supplies and insulin, I understand that completely. I have never gone without my insulin but I have gone without testing supplies so that my babies could be fed and clothed. Diabetes is a very expensive condition. There is nothing we can do about that, but you can look for reduced cost test strips and things like that. www.healthwarehouse.com is a good place to start. You also get a discount for being a member of TuDiabetes. Check out the discounts page on the website. Another option for healthier eating, and one that I take advantage of, is to grow your own veggies. You can then eat them fresh in the summer and freeze them or can them for the fall, winter and spring months. That also gives you a hobby to get your mind off of your troubles. The little ones can help if they are at least toddlers and you will all enjoy it. I have found that I no longer feel 95 if I take good care of myself and keep my BGs in a decent range. I hope you feel better soon and keep “talking” here. There are great people on here who really want to help you. I promise. Good luck and good health. You are in my prayers.

6

Hi Maleri,
I really feel for you! The summer after I had my second child I was diagnosed with low thyroid and put on Synthroid. After a few months, my endocrinologist said my levels were back to normal, but I still felt like a slug. I did some reading (I highly recommend the book “Thyroid Power 10 Steps to Total Health” by Richard Shames and Karilee Shames. As a result of this book, I went into my endo and asked for some T-3 in addition to the Synthroid. I now take 5 mcg of Cytomel (synthetic T-3) every morning, and it really has helped with my energy levels. When I am having the terribly fatigued days of PMS, sometimes I take an extra half tablet or so of the Cytomel with lunch also. (In my opinion, I don’t think thyroid pills can always “keep up” with the body’s demand for thyroid when the body is stressed, like during illness, emotional distress, extremely cold weather, and so on.) Sometimes people with low thyroid feel better with the natural thyroid (like Armour). That is what my mom takes.

I’m going to share a lesson learned: No matter what, don’t stop taking your thyroid medications. I had a problem with my prescription once and in a matter of days of not taking my pills, I was too fatigued to take good care of my children, and I developed a bad dry spot on my leg, which eventually got infected, so then I had to go to the dermatologist and get a PX to fix the infection.

Sounds like your grocery store has a monopoy on the town. I’d encourage you to drive (with a large cold chest) to Walmart and/or Costco or Sam’s to stock up on meat and frozen vegetables every month or so. Even canned green beans are low in carbs, and you can get them for a good price at Walmart, and they last forever in the pantry. Get the large bottle of glucotabs at Walmart, your alcohol swabs, lancets, etc.

I do have days where I say I “feel 80”…hmmm, maybe I should say I “feel 95”? On those days, I test anyway. Maybe I splurge a bit on carbs, but I take the insulin to cover them. It does help to come onto this web site and know that I’m not the only one feeling tired and out of sorts due to the Type 1.

I was in excellent control before and during my pregnancies,but to be perfectly honest, my control has not been very good since having my second child 11 years ago. (This coincides with the onset of the low thyroid condition.) Also, I began at that time being a stay-at-home mom, which in my opinion is a much harder job than my previous office job! I did put my children’s needs ahead of my own, until a few months ago when I began seeing a new endo who matter of factly told me he needed to see at least 4 blood tests a day, and to fax him the entire week of blood sugar results once a week. I had a horrible month in December, trying to get back in the habit of testing. Testing is definitely not fun, but once you’re in the habit again, it’s not so bad. Just tell yourself it is not an option NOT to test. You want to be around to raise your children, and be a good grandma someday, right?

Oh, another lesson learned: just try to change one habit per month. It takes about a month for a change to become a habit. It is much better to take a slower approach of one habit a month, than to do what I did: four months ago when I first saw my new doctor, I tried to start blood testing again, count carbs, eat lower carbs, quit drinking diet Coke, and start exercising. I ended up not being successful at any of them, and my A1c went higher by 2 points!

However, in December I began testing faithfully and watching my carbs more carefully. At first it was really stressful and meals weren’t any fun anymore, but now it is becoming more of a habit, and I actually am feeling much better. (Not sure if anyone has told you this before, but if you are used to running pretty high most of the time, and you suddenly start aiming for very tight control, you will feel horrible for a week or so. It’s better to move gradually.)

You are a beautiful young woman and a good mother–hang in there! I just joined this web site, but I try to look at it at least once a day–it is such an encouragement to me, and it is much harder to live in denial of the big “D” if I visit here regularly.

7

Hello Maleri,
I’m new here and while I’m not yet a mom, I’m getting married this year and my fiance and I have been together for 5 years. We are planning to try for our first at the end of '09. I wanted to respond because I had a burnout and got really depressed earlier in '08. I didn’t really pay much attention to my sugars and was in the 200’s daily. They were mixed with lows though, so my A1C was still low which made me feel like it was ok and I was able to overlook it for a while. Since then I’ve had a struggle to get them back to where they should be. I also struggle alot with the cost of supplies and it is a battle to try to pay for everything. I have had points where it has come down to a supply payment or rent. I still owe money for the last few supply shipments I’ve recieved, but minimed has been great about working with me on them. I also don’t have the best diet because pasta and carby foods are just cheaper. But I’ve gotten better at estimating and can keep good numbers even with the lack of low carb stuff. The pump really helps with that. I have lost faith in doctors for numerous reasons and prefer to use them only when necessary. Makes it harder sometimes, but they’re usually not much help anyway. Just keep trying. learn all there is to about your pump. Experiment with the bolus options. It really is a great tool and can be an asset when you know how to use it. Test ALOT. Once you know more about your pump you can tweak it to your own body’s specifications. Search online. I know that allrecipies.com has a little box in the corner telling you how many carbs per serving are in the homemade recipies on there. And the hardest (and most important) part is to keep your chin up. Keep trying. You’ll feel so much better once you’ve got things in control. It just takes motivation which can be really hard. Try starting off small. Take your girls out for walks. Walking is a really great low impact workout that doesn’t feel like a workout. and it will make you feel better getting fresh air and moving around. Try not to stress. Stress is a BIG factor for me and can have a huge impact on my own sugars and blood pressure. Good luck and I hope things get better for you this year!

8

No matter how unfair it seems, no matter how wrong it may actually be, there are just some things about having Type 1 in the United States that just are. So forgive me if my suggestions below seem unreasonable or impractical for you, but successfully managing diabetes, in my experience, requires these things unless you are blessed with extraordinary amounts of luck and money.

One of those things is that you need group health insurance, either through your job or through your partner’s. Not only are supplies expensive, so is all of the extra medical care you need, in contrast to a healthy non-diabetic of the same age. Now, you also have thyroid issues, which add another layer of complexity and expense to what your Type 1 is already contributing. Is it possible for you to get group health insurance? If not, social services (government) and charity sources are available, as others have pointed out, even if they are somewhat difficult to arrange. Of course, not much is more difficult than dealing with serious health complications brought on by Type 1. Your family, particularly your children, need a healthy mother as much as they need food and shelter.

You also need a very good health care team working for you. A Type 1 diabetic cannot live 90 minutes from the nearest endocrinologist without serious inconvenience at the very least. The majority of endocrinologists I have seen in the 14 years I’ve been doing this have not been very helpful or interested in spending more than the bare minimum amount of time with me with regards to managing my Type 1. I am lucky in that I finally found a good one with a portion of his staff dedicated to Type 1 patients about a year ago but I live in an area where there are a large number of endocrinologists practicing close to me and it was still quite difficult to locate someone like him. Consider moving if at all possible. Being in a more urban area where a greater variety of less expensive food is available couldn’t hurt, either.

Finding out how to estimate the amount of carbs in a casserole is helpful, but won’t be the key to well-controlled diabetes for you. Details like that naturally come out of having a good relationship with a competent health care team and being able to acquire the resources (test strips, pump supplies, etc.) you need to manage Type 1. For example, you may need to do a lot of blood glucose testing over the course of several similarly prepared meals to understand how that meal really affects your blood glucose levels. You obviously cannot do this if you did not buy any test strips because your grocery bill is 3-4x what it would be if you could shop at Wal-Mart or another such retailer.

I know my suggestions would probably require rather dramatic upheavals from your present living situation, but getting your health under control may require them. I didn’t want a desk job as my career, despite the fact I have grown to enjoy it and found a degree of success. I still don’t want one, as a matter of fact, but it is the only way I can get group health insurance. This is, in my opinion, the most difficult part of living with Type 1- many basic life choices most people take for granted are more or less made for you. You can’t live on a boat sailing around the world for years, you can’t be an astronaut, a pilot, a scuba diver, serve in the military, etc… You can’t retire to a remote tropical paradise. You can’t go backpacking in the wilderness for weeks at a time (at least not without extraordinary preparation and considerable extra risk). And, daresay, you can’t live 2 hours from a competent endocrinologist and affordable grocery store, and get by paying for supplies on your own dime.

9

Can I just tell you all how overwhelmed with graditude that you guys would all get on here and take time out of your day to help me. Honestly, if nothing else you have given me the strength to keep going. You’ve all mentioned things that I’ve never really thought about. I appreciate every bit of advice. No matter how extreme. =) I’m not sure I’m ready to give up my diet Coke yet. lol But I will work on it. =) Moving seems easy compared to that thought. lol Just kidding, but I am grateful you all have a source of strength behind you in God too. I have that too, yet unfortnetly Type 1 is not a prominent thing, so I feel there are very few who know anything about it. But am glad that you all do and I can come here. I have great family and friends but I think it’s hard for them also, since they don’t know what I’m experiencing either. I truly appreciate every comment. I look forward to being there for you all too. Thanks bunches.

10

P.S. I went to bed with my sugars fine. Took my 35 un. of Lantus. Woke up at 296. OUCH! What do I need to do?

11

How many shots do you take a day? isn’t Lantus is primarily a once a day insulin? Ask your doctor… but seems like you might need to mix a short and long acting insulin to allow for better control.

You asked me about my son… going off to college. I am actually excited for him to do so… but at times I would guess he thinks I am still too protective… He’s a great guy…and very centered. I’m proud of him. Let’s stay in touch.

12

You mentioned earlier that you were on a pump at one time. Why did you quit? I know they are a lot to learn but I promise you will get better control if you take the time and effort to learn it and use it correctly. I, too, have to drive a ways to get to an endo, but I have found that for my health it is worth it to take a day once every 3 months to see him. There is no doubt that life is not easy with diabetes, but it doesn’t have to be really hard either. Life is what you make of it. Sometimes things happen that are out of control, but like the old saying goes, when life gives you lemons, make lemonade (sugar-free of course). Anyway, take care of yourself so you will stick around to take care of your 2 beautiful girls. Remember they need you!!!