Scared of the Future

[MizzKristi]

Hi Everyone. My name is Kristi. I live in Lengby soon to be closer to Bagey MN. If anyone is close to me I would love to be in contact. I'm 36, I've been a Type 1 diabetic since 1980. I really do not remember life be for being a diabetic. Around age 9 my family did some medical research of why diabetes hit my family, there is no history of it. I have 3 sisters also all type 1, we all got it at different times in our lives ages 18, 15, 10 and myself being the baby of the family got it right about my 7th birthday. My 2 brothers that are not diabetic. Weird Luck, Dr's could not find any reasons why. Well , my almost 30yrs is taking its toll now. Ive been on an insulin pump for about 7-8 yrs, which is great, my overall control is so much better. I have 2 healthy children, Ashley is 12, Brad is 11. I have been termed a brittle diabetic, which now Dr's are not suppose to use anymore. My kids at younger than age 5 knew to get mommy juice, or call daddy at work if a severe reaction happened to mommy, the insulin reactions happened to fast and hard for me to know, no signs. Now thanks to my pump, my kids do not remember those times. Around 99' my tests for blood and urine started showing irregular, not normal ranges of creatinine, bun, potassium and of course protein in the urine. They put me on Lisinopril as a safe guard, still on it, still hate it. My blood pressure has always been normal, it l makes me very dizzy. Around 01'I saw a transplant surgeon, who thought I was perfect for a pancreas transplant. before kidney damage progressed. But I was living in ND and my insurance refused to cover it.  In ND blueCross sees transplant as life saving not preventive. I appealed twice same results. Then I looked in to research programs, I went through thousands of $$, getting all the tests done they needed. I was approved for islet-cell transplant research. I was waiting for the call and months went by, 6 months later I called then, they are about 350 miles away, the woman I spoke with remembered me. My file disappeared completely. But I was welcome to start the whole registration process over. I went through so much I never thought of making my own copies of everything. My husband Brady and I work full-time and with 2 small children. Who has the time. So now a lot of time has past. I do not have my numbers in front of me, but protein is steady at 10 in urine, creatinine, albunin, are steady not in the normal area. And my fears are growing. I have been looking at this site for about a week now crying and laughing, and always learning more. I am so scared of what is comming. My kids are not even teens yet, hows my husband going to be able to provide on 1 income with my medical bills. We struggle now with money just to survive. I saw a Neph about 2-3yrs ago he told me I didn't have to worry for quite a while, Just keep my diabetes as tight as possible stay on lisinopril, and always make sure my blood pressure is good. I'm living close to no-where right now. I am seeing a Certified Nurse Practitioner(Dr's are only there once in a while) She is very concerned about my testes and wants me to have blood and urine tested monthly. I also have MN bluecross now, and she thinks I should look into pancreas transplant again, before my kidneys get to bad. I don't know what to do. Every Dr appointment means missing a day of work. Thats money my family needs. I hate the thought of getting sicker, I've been on adderall xr the last 5-6yrs just to keep functioning every day. I can sleep for 12-18 hours at a time, without it. This last 1 1/2 years there are times I lose a lot of weight and struggle to get it back, its getting harder. Food never looks good, I feel nauseous all the time.weak and thirsty too Even when my blood sugars are great all the time. I'm scared to drive cause I might fall asleep, I  do not have a sleep disorder either, that took 3 grand to be told that info. Please contact me if your story is at all similar, or a step further than mine. My email is kristinesmachine@yahoo.com I welcome any thoughts or advice.Thank-you for making this web-site its the best I have ever seen     
 

[MandaMe1986]

Welcome Kristi.  I am sorry to say I have no advice for you. But I am sure you will find plenty of people on here who will.  This is a wonderful site full of wonderful people. Lots of love and support.  I am glad you found us.  Hope to see you around more often.

[David13]

Welcome, Kristi!   

It sounds as though you have a lot of decisions to make.  I think the frequent monitoring the NP is doing is a good thing, and with your new insurance, maybe you should at least look into your transplant options again. 

At any rate, it is always better to have knowledge about your condition, and this is a great place to get it.

[willieandwinnie]

  Kristi. I'm sorry I don't have any answers for you but someone will come along and help, I'm sure. We are a great group, loads of information, support and laughter as you have found out. Sick around and you'll get your information. 

[paul.karen]

  Kristi

Great introduction.
I wish i had some words of wisdom but i dont.
I agree going to the doctor so often is a big financial strain i am lucky i only go every two/three months.  I agree with poster above me to see if your new insurance may cover some costs your old insurance didnt.

Great to have you here, hope to see you on many threads.

[monrein]

Kristi, I want to welcome you to this forum and although many of us may not have direct advice for you, some will share aspects of your situation and will tell you about their experiences.  What we all can and will do is offer you lots of support as you navigate these very difficult times for you and your family.   

[G-Ma]

 

[lola]

Kristi
1st-
2nd-
3rd-I live in Brooklyn Park MN
I wish I could offer advice but my husband's health issues are totally diffrent, but you have come to the perfect place. IHD has the BEST and SMARTEST group of people around, they have held me up through some pretty rough times. We are ALL here for ya

[willowtreewren]

I have been looking at this site for about a week now crying and laughing, and always learning more.

Kristi,
I think the most important thing is that you stay informed. You have so much to be thinking about, but stress is never good for you (or for your family).

This is a wonderful supportive community. Although we may not be able to give you advice on all the specifics of your condition, we can at least give moral support.

Welcome to the IHD family. I hope things start looking up for you.
Aleta

[MizzKristi]

  I can't begin to express how much your welcome means to me. I feel like I've came home , if that makes sense. I work from home on computers most days, so I'm on the web off and on most of my awake hrs, I feel as if your old friends I haven't talked to in a while. Which feels great. I would love to hear any information on any Type 1 diabetics, especially on lab / numbers, how they changed time wise be for dialysis has had to be started. I guaranty you will hear back from me. I'm also a great listener/reader always looking for new friendships. I do not get out much. I welcome any correspondence from anyone. My thoughts and prayers are with all of you at all times.

[twirl]

we are here for you 

[Joe Paul]

Welcome Kristi, good to have you aboard.

[Maxridex]

Welcome Kristi, Great to have you here.

My grandparents ( Mom's side ) Have type 2 diabetes and she's doing great. She can't eat alot of things and she needs sugar to improve her blood sugar. Sorry I don't have many advice but I'm lucky not to have diabetes cause my mum still didn't inheritate her mum's yet. So finger's cross I won't have it in my life.

P.s Kristi 'Never Give up' and keep sharing your feelings with us because we are here to help you go through the hard bits.

-Max

[Romona]

  I felt the same way when I came here. Another kidney patient is an instant friend that understands without having to say a word.