In answer to that question, which several OC bloggers have sent to me....... Well, I am working my butt off in trying to manage my bg values and yes, I am kind of sick of the whole thing! What is causing what? When my bg values jump I feel terrible, both physically and emotionally. I BELIEVE very strongly that there is a physiological explanation for my emotional downs. Physically, I am tired. Emotionally, I am upset b/c I do not feel in control of who I am. I hate having my emotions messed with by my diabetes. WHO AM I IF I AM NOT IN CONTROL OF MY FEELINGS? I find this very upsetting. I want my pep back. I want my positive attitude back. NOW!!!! I am tired of whining. However I am a terrible faker......
Then I flip the coin and my head says "You have zero to gripe about!" And I know that is true so I get even more annoyed at myself. So I stop writing b/c I do not want to gripe about nothing, and I cannot hide my true feelings.
And this is no big problem. Right now I have a diabetes that is throwing loopers at me and I am dealing with it fine. No passing out from hypos. No super, super high bg values - just 24hr of 24 hr attention to diabetes. The old story - starting in March first I had humongous hypos after lunch which required that I decrease my lunch meal bolus by 50%. Then slowly over time I had to increase the meal bolus to the normal amount, and THEN I began to have to increase it up an additional 50%. Th whole time I am scared to death that things will rapidly change and I will pass out from a hypo. For the same food and exercise I went from 5U to 2.5U to 7.5U, since the middle of March. Constant change! This constant change means that my bg values are often a little off and I must adjust and adjust and adjust. ...... So I am TIRED of thinking of diabetes. AND I AM SURE THESE FLUCTUATIONS ARE MESSING UP MY EMOTIONS! I feel that it is not the other way around, that my emotions are messing up my diabetes. Why do I think this? I think this because I am always one step behind. At 7.5U I started feeling my old self returning. I was happy, peppy. Then this Thursday I felt weak and oh so tired after lunch nd yes a bad hypo. Down to 40 mg/dl after lunch. My gut feeling was that I had to really eat - so two large slices of bread with peanut butter and lettuce and fresh spinach. I gave no bolus for this. I only needed a very small amount of insulin for this extra food three hours later. During all this time I am testing and testing and testing...... So now I am at 6U for the lunch meal bolus.
So I just don't want to spend the few minutes of my day that remain on thinking about diabetes. I have to read and get my mind on something else. I don't have the energy to walk..... Help from my endo? Forget it! Yes he did say that he thought my meal bolus would eventually return to the normal, but he didn't know when. So it is up to me to deal with it.
I KNOW lots of other people are sick of such crap too! I KNOW I am not alone on being worn by this crap. However I still feel alone about the ketones, which remain! (Although Heidi and Lili notice weird things when they have ketones.) I still feel alone that no one else has spoken of such major changes in insulin to carb ratios over such a short time span. I still feel alone that no endo is there to guide me. I get scared.
AND I DO NOT WANT TO WRITE A BLOG OF DEPRESSING THOUGHTS so I would rather just shut up! Think about other stuff. Exercise my brain. Does somebody want to explain to me why Sasha says change in air pressure when we travel in airplanes affects our blood glucose values? See the comments here in Allison's blog.Why would that be?
So if I am quiet it is because I do not feel I have a right to gripe, and I cannot hide things very well.
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23 comments:
chrssie, you damn well have a right to gripe. You are very very precise and responsible in caring for your db and you also have a right to expect consistent results. F--k It All!!! I hate it!!! (......maybe you can tell that I'm not in such a good place myself).
Our bodies and minds are all tied together in a big web. Emotions affect our bg, bg affects emotions. Your fear of gong low is very valid. And the fear of stayng high invites shame, guilt and dread of complications to come on in.
I wish I had the answers, but I don't. Give Skye a big hug and let him lick your face.
Hope you have better days ahead.
Hey Chrissie,
I hear you - you work very very hard to manage yourself, and I can certainly understand that it can be tiring when you are not getting the results you deserve.
I think that when you put in all that work, and get the results you expect - it somehow makes it not so hard to continue working! But when things are not going as expected, it can be EXHAUSTING!!!
I wish I had some information I could share on the ketone thing. I just don't experience the same thing as you. Though I do believe that I have ketones more often than I realize, especially exercise induced ketones - I can't afford the strips to be able to test my blood and still rely on the urine testing. I do feel they have an effect on me - but not as severe as what you deal with. I'm sure it is very frustrating.
Don't worry about posting unless you feel like it. Our blogs should never be another added stress - but rather a place to express ourselves.
Take care Chrissie! We love you!
Chrissie,
Just a thought here, but have you considered trying a new vial of insulin? I have recently discovered that variability does exist from one vial to the next (according to the U.S. Patent and Trade Office, the variability for Humalog may be as much as 20%!). What's more, there is current little testing of insulin to insure consistency in potency other than those minimal requirements from the US FDA or the EMCA. It might be worth trying a new vial and seeing if your results improve!
Kathy - I got goose bumbs when I read your comment. YOU UNDERSTAND! It really does help to know that others have similar stuff going on.....not that I am happy you too have problems. I don't think non-diabetics REALLY, REALLY get what we go through. I adored the Master Butchers Singing Club by Louise Erdrich, and I have ordered her other two books The Antelope Wife and The Last Report on the Miracles at Little No Horse. What a surprise ending! I loved Cyprian and the relationship between him and Delphine. OK, this maybe was not an everyday relationship, but for me the quirkiness was absolutely believable. I liked him as a person. i wish I knew him. I wish he was my friend. People ARE quirky, at least interesting people are. Nothing is really simple in life! Parts of the story are based on her grandfather's experinces as an immigrant, and I think this comes through. Just so people don't think I LIKE all books - forget reading Snow by Pamuk. He won the nobel prize for litterature this year. I don't recommend it. I in no way could relate to the people in this book. Now I am reading Norwegian Wood by Haruki Murakami (recommended by Cas). He is really admired in Japan, and although the topic isn't really what I would pick (young adults looking for partners and figuring out where they fit into the world), many statements really get me thinking. Like when was the last time you saw fire flies. They are not here in Europe. Last time I saw them was in Nantucket, a warm hot evening, all the memories flood back! Remember having them in a bottle next to your bed as a kid? This is a good author. Lots to think about. Constantly I will hit on a statement and think - huh, that is what you think. What do I think? I need to exercise my brain on something other than diabetes!
THANK YOU KATHY for being there! You are right, we don't have any answers, but friends and dogs help. I guess cats too. Everybody - follow Kathy's advice - go and hug your pet. Let them give you a big lick.
Hey you two Scotts - thanks for reading and responding and caring and understanding and really trying to figure out what the hell is going on..... I think it feels so cool when I write a comment and then a new comment appears and I KNOW that someone else is writing at exactly the same second; It feels cozy :) Yes this is exhausting - physically and mentally (spelling?). Scott I have changed bottles. I had no idea that humalog could vary so much - another thing to consider! Not only can the monitor results vary by 20% but also the insulin potency. What is this for crap? No wonder we diabetics have a shit time! I just tried a new bottle b/c I was trying to go through all the variables. I am way to logical thinking - it can drive you crazy. Better to be nonchalant and stupid - of course than you are dead.
Chrissie
I was wondering why you hadn't posted in a while. Now I understand.
I'm sorry to hear you're going through such swings. I always find that really tiring. One bad day of highs and lows can really wipe me out for the next day as well.
Can I admit that I'm a little jealous of you? I read about your latest A1C's, and I've NEVER had mine that low. My latest was up from January (after 2 weeks on the Dexcom), I've no idea why it was so bad (8.2).
I hope it all settles down for you before too long.
Bernard, You don't want to be jealous of me! Look, before I got my pump i don't think I was ever in the 7s, except the last test before I got my pump when I had a 7.7. To get that 7.7 required that I exercised everyday and ate the same breakfast and lunch EVERY day. Also I don't have young kids any more. I can do what I want when I want. That isn't possible with young kids. You have to make compromises in life. I just don't think doctors really get how hard it is to manage with the threat of hypos and complications hanging over our head every second. I think it is unbelievable that our monitors are not more correct, that insulin is so variable, that c-peptides are unavailable, that no one has a clue to how ketones affect us.... Need I go on? No wonder we suck at managing our diabetes! Some doctors turn around and say we don't try. Who wouldn't give up now and then. I NEVER criticize other diabetics. We ALL try our bests. We all have different circumstances to deal with. Some of us can't even affort the insulin and test strips we need.
Dam diabetes!
I hate thinking about it all the time. I resent it. Certainly some days more than others.
I'm heading off to get snuggles from Dixie.
Chrissie,
Any possibility of getting a CGMS?
Maybe they aren't available where you are..I've known other people in Europe who got them.
I hope the bg fluctuations end soon-it is impossible not to be an emotional wreck (due to them)sometimes.
And you don't have to talk DB- talk whatever you want! I loved the travel pictures.
Take care.))
Hi Molly and Heidi,
Thanks for dropping by! Molly give Dixie, your "live and wagging CGMS" a hug from me too! No Heidi, I cannot get a CHMS here in Europe. Sure I could buy one privately but with no guidance at all I am not so turned on by the idea. Also, I really have some trouble finding enough spots to put my pump's insertion needle, let alone another appliance!
Hi Chrissie,
I haven't been around much lately either, thus I only read your post today. Anyway, I'm sorry that you have such a hard time managing things. I feel your frustration, why can't there always be a logical explanation to the changes in our BG's, insulin needs and sensitivity? That would certainly make thing easier, but I guess that diabetes is just no meant to be easy. It is a challenge that we have been assigned, and we can only do our best. Please know that we are here to listen/read and support you no matter what the issues are!
Thanks Heidi! Should I put you with me and Lili in the group of people that react strangely to ketones?! Your vomiting bout sounded terrible! You think it was related to the ketones? I am back again to 7.5U for my lunch meal bolus!
Chrissie -
I'm a little late. Damned blogrollers haven't shown me your new post... Ah, well.
I believe that diabetes screws with our emotions - and it IS frustrating and scary and I've had periods of just being SICK. OF. IT.
Scott's right, if you need to remain quiet that's OK - but do pop in and let us know you're OK.
Nicole
Hi Chrissie
This is just a quick note to see how you're doing.
I hope that all is well with you, and that we'll see you blogging again before too long.
Hi Chrissie,
This is Renée in Japan. Yes, I got your email (and loved it!), but I am terrible at sitting down at the computer and actually doing something I am supposed to do! Now that I have found this site, I am trying to use it, but I can't figure out how to get it in English. I mean, all the messages are in English, but the directions for doing whatever are in Japanese. Oh well. I am trying!
I got my pump!!! Now I have to look at it and play with it and maybe try out some of the features that you can use without connecting it while I wait for my Joslin's appt in July. I was really excited, but I must admit that I am getting nervous now. All the bloggers sound so much more knowlegeable about their db than me. After 35 yrs you would think I could at least carb count, but I can't! I just don't eat normal. I graze. Even when I try to write everything down, I never get further than one day of keeping track.
I never check ketones. I always figure that as long as I don't feel sick and am not losing weight I don't need to worry about them. I am probably wrong. Lots of times my bg's are over (WAY over) 200. Maybe that is why there are days when I just don't feel like doing anything, and then I get down on myself.
We had to leave my puppy (a BEAUTIFUL 10yr old mixed shepard!) with my parents while we are in Japan. My mom says that everytime I call them on the computer he comes in to listen, sometimes running outside to see if I am talking through the window!
I should stop now, because this is your blog. But I'm glad I found it!
I haven't responded to Nicole, Bernard or Renée.... Shame on me! I will tell you quickly what is going on in my head and then respond to each of you. What do I know for sure about diabetes and for that matter, life in general too? I KNOW that nothing remains the same. What you think works, changes and it just doesn't work any more. BTW I am still at the huge dose of 7.5U rather than the normal 5U for lunch. I decreased it a teeny bit for a while but then the need for 7.5U returned again. Today 7.5U caused me hypos and I am thinking of decreasing it a bit. The bummer is that I am tired of spending so dam much time thinking about what to do day by day and wondering what lies behind the change! As I said before, the endo said everything would go back to normal, although he didn't know when. More than two months I have been struggling with this. Every dam day. With no advice from anyone. I am annoyed that no doc can help me out here! I am not annoyed at my doctors. I am annoyed at the lack of knowledge about how diabetes really works!
Nicole and Bernard, well this comment lets you know that yeah, I am still alive and kicking! Thanks for checking out the comments, as you know that is how I use my blog. I prefer to continue discussions via comments than always posting new posts. New posts make me feel like I have to "do a good job, present a topic correctly" and right now that is just too much for me!
Renée, yeah we really do have a lot in common! You have one thing ALL WRONG - my blog is a place to DISCUSS things. It is NOT a place for me to proclaim my views. So never think you have to keep your comments short! The longer the better! Half of the time I do not even know what I think. That is why I need to discuss things with others! Through discussion I begin to understand what I think. I have so many questions! BTW nobody has offered an idea on why air pressure affects bg levels. I KNOW I should go onto Sasha's blog and direct my question to her, but then i feel bad about visiting just ONE blog and I do nothing..... Renée I do think that by going to Joslin they will really help you start out on the right path with your pump. I do believe in careful logging of test results so you can see what works for you. Counting carbs really hasn't been that helpful for me since not only carbs but slso proteins and fats definitely affect my bg values. This I have seen with careful logging. Careful logging and keeping as many variables as possible constant for a while shows you how the different variables affect YOUR body. Careful logging also shows you that bad bg values, which you THOUGHT were caused by your own mistakes and bad choices, are in fact caused by something else and NOT YOUR FAULT. Email me when you have time. Realize that you are a "lucky-duck" to get care at Joslin. Hej, and while you are there learn all you can about how protein and fats and ketones can influence bg values because there is not much info available elsewhere. On the the other hand proteins and fats and ketones maybe don't affect you much..... There has to be a reason why these things affect some people and not others!
Hi Chrissie. I just wanted to say hello and see how you are doing!
I miss reading your posts.
I hope all is well.
Hi Chrissie,
I'm a lurker and I miss your posts. Just wanted you to know.
Hey Woman! I havent been blogging for a bit & thought I'd check in w/ya. I totally agree... I worry worry try and fix blah blah .. my son has the diabetes and my daughter is mentally retarded.. ME well I'm fucken emotionally "All Over the Road" so to speak! Hug that BEAUTIFUL baby I saw pics of a little while back and take a day trip ~ yeah you'll have to still do the routine BUT let your mind "re-boot" with other interests. I've been gardening this year there was NO money for vacation UGH! Been trying to plan my next vacation/adventure... Summer concert tickets lining up, fishing plans,painting and really need to get my butt to the gym before swimsuit season hits!!! We FINALLY have sun here in Massachusetts! A friend just got back from Greece and the pics and stories were AWESOME! ANYWAYS,Take care I always like stopping by good or bad . Lifes a rollorcoaster hang on til the next up !!!!! keep in touch.
Just checking in - are you still kicking around out there?
Is there any way you can get the new Dexcom 7 Continuous Blood Glucose monitor? Will the government pay for it in Belgium? These are really drastic BS changes over short periods of time and since you are not clairvoyant there is no way you will be able to really predict these changes without a continuous monitor. Even if you don't want to wear one full time, you could use the continuous monitors for months like these. The new Dex will have a 26 guage needle, waterproof and more accurate. It will be out soon. I would investigate these monitors to help you. P.S. Although expensive, users trick the machine and are wearing the sensors for 9, 18, some get 25 days out of one sensor!
Sorry for recommending the Dex. Just read your other posts where you said you could not get the continuous monitor in Europe. NOW YOU CAN! It is the Navigator, THE most accurate of them all! It has just been released in Europe, not the US market. You can trick that sensor too, I believe, which will make it affordable. If it is not available immediately, it will be very shortly. Do try to get one! You need some peace of mind. And it seems there is NO WAY you can trouble-shoot your BS when they are acting up without one. I think your insurance should pay because you can demonstrate extreme need due to hypos and very extreme swings.
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