Perfection Wanted

Hi let me tell you a bit about myself, I am a 50 year old woman that is wanting perfection with my health. Hmm don’t know if that is possible with my situation. I have been ill since I have been 7 years old and the older I get the worse it becomes.I have been to so many Doctors I can’t even count the times, yeah ! and believe me that gets old. I was born with a fat cell disorder I do not have fat cells my condition is called lipodystophy which causes several medical conditions. Well it was hard to live with at a younger age because I didn’t understand it and you know how it is when you are a child, kids can be cruel. well got through that chapter of my life. When I reached the age of 13 I started having pains in my stomach, my mother took me to the doctor and the diagnosis was nervous stomach. Well they treated me with different stomach medicines and then it went to nerve pills. They came up with nervous stomach so I take them and the whole time I wasn;t getting any better. The years went by and nothing was better I still hurt, but I noticed I was in more pain. Finally when I reached the age of 32 it was so bad I would double over in terrible pain just couldn’t take it anymore. My mother and I found a doctor out of town and the doctor says well we are going to remove your Gall Bladder and see if that helps. Well he set me up with a surgeothe Gall Bladder came out and I was healing with that. Well the pain came back and at its peak very bad pain. Well then the doctor that I was going to sent me to New Orleans Ochsner Clinic. Went to the doctor there and he did a test with the scope down the throat, by that time I didn’t care what they did to me. Well he roped a piece of my intestines and found tumors covered my intestines and pancreas. So that mean’t surgery again, but this surgery is called a whipple. They had to reroute my my bile ducts all my plumbing, just trying to have a sense of humor. Well I had the surgery and stayed in the hospital eight days and it was really hard to get through those days.Went home and was home one week and developed Pancreatitis which is a complication after the surgery. My pancreas was infected and had to go back to the hospital for 17 days that time. They kept me so doped up I slept alot. That is very painful would wish that on anybody. I had to have a feeding tube up my nose and down the throat very uncomfortable but I couldn’t eat or drink anything for 17 days. Okay finally get through that took over a year, and 5 years later I was diagnosed with Diabeties, you see they had to remove alot of my pancreas so it was not putting out insulin. They put me on insulin injections and put me on Metformin, Well my regular doctor kept me for 11 years and never did he send me to a diabetic class or an Endocronoligist, my sugars were all over the place. My pancreas ended up infected again back to the hospital for 11 days so the doctors in new orleans recommend me to go to a internal medicine doctor. I found my wonderful doctor close to me and the first thing she did was sending me to a diabetic class which I learned alot. I learned how to count carbs.Well went back to my doctor and still could not get my BG in control so she sends me to a Endo doctor out of town. I start seeing him and he treated me and was able to put me on an insulin pump which I have been on the pump for almost two years now and still can not get it in control. So I took another route I found a Doctor in Houston Texas he is a great doctor and he knew the fat disorder that I have just by looking at me. My sugars has been crashing so bad it has went down to 20, It scared me so bad my husband was going to take me to the hospital but I came out of it thank god.
So I went back to him and he recommends me to bolus 3 hours after I eat even though it goes high they can’t get it control.
My lipodystrophy is causing my insulin to not absorb like it should. when I put my set in it goes into my muscle instead of fat so it goes through my body too fast and it makes my sugars crash. He would rather it stay a little high than go low. I hate lows it makes you sick. My doctor recommends the Dexcom seven plus, which I am waiting for the system as we speak they are sending it too me. It will alarm you if your sugar is going too low or to high. If anyone is using the device tell me about it.

Oh my gosh - you have been through a lot. Praying that they find something that works for you to be able to manage your diabetes. God Bless You!

Thank you so much for your soothing and kind words, I have to fight for my life everyday and I get so tired…lol…I have to survive and I will surely take care of myself…And you take care as well…God bless you and thanks for caring…Darlene

What you’ve endured. Generex Oral-lyn may hopefully be something your endo can get for you. It’s an inhaled insulin that’s been used successfully in Asian countries. Doctors can enroll patients for this treatment.

Thanks Gerri for the information but I have to have insulin going through me at all times, If I would use the inhaler I would be inhaling all the time…I don’t think it is approved in the United States. He also said that he could try to treat my lipodystrophy with pills they are not approved here in the states but he wants me to try it, what it does is put fat in your body naturally…But I would be experimental and I don’t know anything about the side effects. He put my name in to get them sent to me free of charge to try. Im nervous about that but I have to do something. I did jot that address down and I will check it out…Have a good week…and thanks again

Everyone on insulin has to have insulin going through them at all times:) The buccal insulin works the same as injected insulin it’s just a different delivery method. You wouldn’t be inhaling all the time just as you’re not injecting all the time. Patients in the US are eligible & your endo has to enroll you. It’s been used in Asian countries, but not on the US market yet except through the enrollment program.

I hear you on experimental drugs. That’s a hard decision.

No I don’t take injections Im on the insulin pump, But I will ask my endo doctor…thanks

Well, it’s the same principle as injections with syringe or injection with a pump.

I don’t think that you understand me I have 2.8 units going through me 24/7.I have that amount every hour plus I do correction through the day…but okay I will keep that in mind

Yep, your basal.

Yes thats the thing…lol

I don’t know how buccal insulin works regarding basal, or if it’s bolus insulin. This was developed as an alternative to injected insulin, so that may be addressed. Other older forms of inhaled insulin were only for bolus. Ora-lyn is an improvement. Realize you take high doses with a pump & this must be hard for you with lipodystophy. Development of scar tissue is a real problem with pumps.

Yes the Lipodystrophy plays a huge part of my diabeties I am not easy to treat my doctor wants to keep my target from 180-200…because I am very unpredictable with my BG doctor says there isn’t anything about it unfortunatetly.

Do you have frequent lows that your doctor has your target that high? 180-200 really is dangerously high when damage occurs at 140. Honestly, doctors always prefer highs to lows. They could potentially be held resposible for lows, but no one holds them accountable for the long term damage of highs. Not their bodies being damaged. When a doctor says there’s nothing to be done, it means is that they don’t know how to effectively treat us. Not an acceptable response even with the challenges you face. If you don’t mind my asking, how many carbs do you eat daily? Lowering carbs=taking less insulin. Smaller insulin doses=more predictable results. Smaller doses can also mean less scar tissue from pump sets.

Yes my blood sugar does go really low my lowest one was 20…My Lipodystrophy has alot to do with that I usually eat 60 carbs a meal about 180 a day sometimes more…I have 2 eye diseases that make you blind I have cataracts in both eyes, I have retnaothopy neurothopy and macular degineration. My right eye is bad I can’t see much out of it but my left eye is alot better I have had 6 laser surgery’s…

It might be worth an experiment to lower carbs. This gives better control with less drastic swings between high & low.

Yes it is worth trying the new drug to put the fat in me naturally…all I know is I have to stay focused and take care of myself the best way that I can…thanks for listening to me…It really keeps me going…Have a good day

Could someone that is using the dexcom alarm system please tell me about the experience. I am getting on the device in a day or too…just wanted some feed back…thanks…Darlene

Wow! I’ve been whining about being “somewhat ill” for a few years. I can’t imagine what it must be like for you. It must be so difficult to live with uncommon conditions that doctors don’t know how to treat. I’m amazed that you have been able to get through all that you have. My thoughts and prayers are with you.

Thanks I have been through quite a bit in my life time but I hold my head up and fight it…And yes I have those moments that I get depressed but taking meds for that and Im just taking day by day…I have pretty tight control but yet I don’t.doc says just eat and test 3 hours later and correct thats all I can do with my rare disorders…Have a good night…feel free to visit me again I would love it…Darlene