First off a little history on me…
Diagnosed as a type 1 at 30 years of age, completely healthy up to that point in life. 35 years old now and have NEVER been in control of my levels. I have had 5 doctors in 5 years. They all seem to close up shop or leave town and Im left in the cold. I left one endo on my own accord due to him having personal issues outside of the office that were MAJORLY interfering with his practice. I Left the first doctor I had as he misdiagnosed me as as a type 2 and seemed content to let me waste away (I was 125 pounds at 6 foot tall with a BMI of below 0). Second doctor left practice, third doctor was the best and she went military, since then I have visited two doctors with very little progress. I am almost in as bad of shape 5 years in as I was the day I was diagnosed. I have gone Keto in the last 12 months and it was not fun.
Here is where I am. A1c floats between 8 and 11 . I am on a pump the Cosmo (have had 2 different pumps in 3 years as well), but the pump has never been properly tuned in for my levels. I lose doctors before we complete things and the next doctor wants to do it his/her way and Im back to square one.
Currently I am in the middle of MAJOR rollercoastering over the last 6 weeks and once again TRYING to find a doctor that can make things work. I have lost 15 pounds in 6 weeks, missed many days of work and depression has began to set in. I am not a depressed person by nature, very happy go lucky optimistic…but as I see this it is threatening my employment, hurting my family and destroying my will to push forward. I honestly have had enough, Im almost to the point of not caring. If I didnt look up and see pictures of my two great kids who REALLY need their dad I would have hung it up by now.
What do you folks do when it seems the weight of the world is sitting on your very being? I am the financial breadwinner in the family 80% of our income. My job would LOVE to fire me Im sure as I have been in and out of the hospital and missed many days of work over the last few years. I was just told I am not under FMLA coverage and currently I am in between doctors so getting that coverage wont be easy. I have missed about a dozen days work over the last two months maybe a few more.
I am ready to give up on ever beating this disease. When I walk back into work tomorrow I fully expect to be given the third degree and threatened with firing if not fired. If I lose my job (I have been there 5 years) the task at hand gets much more difficult. I am behind on everything I own and there is no hope in sight. The disease in combination with the stress from daily living has made life on a daily basis unpredictable and nearly impossible.
Just looking for advice. When I found this place I could see there were a lot of folks who have experienced many of the same things i am experiencing. What do you do when things seem to be out of your control and there appears to be no hope in sight?
On a side note…I will be going on my THIRD different pump here soon. One with a CGM attached. Hopefully this helps.
While it is important to have a supportive, and assertive medical team, my sincere advise is to self educate on insulin, and how to dose insulin, by getting some books like “How to Use Insulin,” “Pumping Insulin,” or “Think like a Pancreas,” etc. Many doctors are not as educated as they could be about insulin dosing as it is such a variable changing game, and sooo many daily situations can affect it. I don’t know if you’ve ever read any books like these, but they have helped very many people take back some control of their diabetes management.
I am Type 1, and it is hard. It is constant, and it is totally normal to feel overwhelmed sometimes, especially if you are in over your head, and you are!
First thing I do when I am depressed is I go to youtube and watch the “My life as a pin cushion” videos. They always make me laugh. It helps me find humor when I am overwhelmed.
Second thing I recommend is either buy or check out from your public library “Think Like a Pancreas” and “Pumping Insuilin”. You read them both, and have your wife read them both. I know your diabetes is yours, but it is hers too, since you are married with kids, and if you develop complications, she will have to be your nursemaid. Also, since you are ill and depressed, another set of eyes and ears can be helpful. Once your bg’s are better, you won’t be so ill. This is just temporary. Rember that!
You need to read those two books. You are making the mistake of trusting your endos to teach you everything. Every diabetic is a little different, and you need to learn the skills, and how to fine tune them for yourself. You, or perhaps your wife, need to learn how to adjust your pump. You need to learn to adjust your i:c (insulin to carb ratio) for different times of the day. You will be amazed how much you learn and how do-able this is. One thing, too, that is stressed in the books is something like “You need to adjust one thing at a time, and once you get proficient at that, move to the next item.” There is so much to learn, but if you make a list of what you need to fine tune, and adjust one at a time, you will be skillful and healthier, with a much lower A1c, probably within 2 months, instead of flailing around for years. Once you get proficient, you can tell your wife to back off, but I totally recommend getting help.
I personally don’t see an endo, because I have been to both of the ones my insurance covers, and they are both idiots. My primary care doctor can prescribe anything I need to manage my diabetes.
You can ask me, or anyone anything related to diabetes, and we are happy to contribute what has helped us. Good luck!
Lizmari is right. You need to educate yourself. Honestly, I read “Using Insulin” and it cleared a whole bunch up for me. I also read “Think Like a Pancreas” and that has some very good information in it. You might want to read “Pumping Insulin” as well. It’s by the same guy who did “Using Insulin.” I had had horrible patient education at diagnosis (age 13). Most of what I learned I picked up on my own. I met with a diabetes educator once when I was around 28. My only other excuse is that I’m remarkably lazy.
You are covered under the ADA, not FMLA. The Americans with Disability Act covers chronic conditions. If they hassle you, you can sue the bejesus out of them. You do need to get your basal rate locked down. If you are up and down, you may need to rethink both your basal and your I:C factor. Getting a CGM will help immensly. The CGMs are great for watching what’s going on in real time with your glucose. I ended up in the ER one night when my Dexcom said 80 and I was seriously below that. I don’t remember much about it after that. You do need to check with a finger test just to make sure much of the time.
You can get in front of this thing. You can come to exercise some control for the most part. You need to settle things down as the great fluctuations can be very damaging to our bodies. Also, you will feel so much better.
This is a community of very experienced folks. If you have a question, just ask and someone will have been there, done that, or given the t-shirt away as a gift. The folks here are really great.
The above suggestions to learn as much as you can yourself are really good because the more you know the more in power you feel which without changing anything can be a big mood booster and help you to cope with everything. Also pumps and/or CGMs are still just tools and without understanding what they’re doing and capable of, it’s hard to get the full benefit of them.
In addition to reading up on your own, you can search this website (if you know what you’re looking for) or ask for something more specific. You can also look to see if there are any support groups or groups that do education or look into seeing a diabetes educator who could help you fine tune your insulin pump settings (I’m not sure but I thought that some pump providers also provided this service?)
Rollercoasting is not fun. In general cutting back on your reactions to events could help minimize this effect (e.g., not over-treating lows which leads to a rebound high or waiting for correction boluses to fully work itself out before adding more so as not to have too much insulin in your body at once)
Going from no/little control to management is not an easy process and advice like tackling things one at time is really good. Also keep in touch here to stay motivated because it can be a lot of work, but it’s definitely worth because you feel better both physically and mentally 
Thanks for the advice folks. I will check out all of the books mentioned and read them. Let me add I have never approached the disease properly. It is secondary to me chasing the dollar. I work 10-12 hours a day 6 days a week at one job and am always moonlighting (Im a pc tech by trade). If there is an opportunity to make money it becomes priority #1. Unfortunately in this economy and in my situation that has always been my focus…Then I deal with the diabetes as I get to it.
I tend to have 1-2-3-4 months in a row where all is well and then things fall apart and Im in and out of productiveness for a week, two weeks a month. sometimes that ends with hospital treatment other times I am able to regain some control and feel better on my own…but it always happens. I had a doctor that called this chasing my tail.
More background on my situation. I have a GREAT family situation. The wife and I have been together since high school. Married for 13 years and still committed (together for 21 years). It breaks her heart to see me like I am, I know it. She remembers the high school star from baseball and hoops, the never ending energy I had playing ball 5 nights a week long after school years passed. Now she see’s a shell of the person I was, no energy, always feeling bad, always looking bad. Just a mess of a man compared to what she remembers. She will do whatever it takes to help me along, I know I have her support. I also have a supportive extended family. The support system is there. My problem is I am a very private person, I dont like sharing my shortcomings and downfalls with others. Its REALLY hard for me to open up my weaknesses for the world to see. I struggle with that daily. Even to the point of pushing through things (like work on a bad sugar day) when I know I should probably stop and correct things.
I am taking all advice and will use it. Dont let my own issues I am posting here deter you from offering advice. I am just putting out there where I struggle and looking for what others have done to get past these issues. I have no doubt that if I do not control this disease I wont live a long life, my quality of life will never improve and there is a good chance that my 11 year old and 7 year old never get to introduce their kids to me as a Grandpa. I want to take control NOW so I am there LATER for those who may need me. Not to mention my poor wife, I have heard her cry herself to sleep worrying about me. thats not how it should be. I want to correct it, before its too late.
I’m sorry that things are so overwhelming! Step one is to take a deep breath and know that you’re not alone and that many of us have struggled at one point or another. I don’t think you need to ‘beat’ diabetes, but just get to the point where you can have a peaceful coexistence. Know that no matter how hard you try, there will be good days and bad days. Just work towards more of the former and fewer of the latter, one step at a time. It isn’t always a quick process.
I ditto the suggestions on self-educating. The more you know, the better off you will be in each and every decision that you make. But I would also encourage you to find an endo with a good, supportive nursing staff. If the doctor does not have a nurse practitioner and diabetes educator (CDE) associated with them the keep looking. NPs and CDEs really form the backbone of a good practice. They can afford to spend more time with you, and meet with you more often when you need it. Good doctors are out there, so don’t settle. You have the right to be picky!
I believe there are certain exceptions to ADA coverage, such as workplaces with fewer than 15 employees.
Even with ADA in place, it goes only so far. I live in Colorado, a so-called “employment at will” state, which means either the employee or employer can sever the relationship for no reason whatsoever.
Your best offense, therefore, is a good defense through self-education.