I need to vent... sorry!


(BeckyBee) #1

Hi Guys,

Had a horribly scary experience tonight that had made me so angry/freaked out/scared/sad that I don't even know what to do about it.  It's comforting to me to know that all of us are dealing with the same things (sorta).... so here goes:

I went off my insulin pump about 8 months ago for financial reasons.  (I'm one of that unfortunate majority with the sneaky mortgage that exploded.. sigh).  Suffice to say, a foreclosure later, I am still struggling to dig myself out of that hole.  Ok, we all make mistakes.  I get it.  I had seen an Endo at the hospital near my old house maybe 9 months ago and told him that I was terrified of not being on the pump, and that he needed to help me get switched over to a Lantus/Novolog routine pronto.  Well, he was upset to say the least.  'I should try to stay on the pump', 'there are financial assistance groups'.. etc. Well, I contacted by phone or email EVERY SINGLE ONE of those groups.. and big surprise, lots of people are in my same situation and none of them were accepting any more applications for assistance.  So I go onto Lantus and Novolog... I have the prescriptions refilled a few times... I STILL can't afford to go in and drop the couple hundred dollars that it costs to have bloodwork, so tonight.. when I called to refill my Lantus prescription, Walgreens told me that this IDIOT Endo's office had called last week and cancelled the prescription because I hadn't been in to see him in a while. 

Ok, so I understand that they want me to come in... THEY don't understand what a stretch that is for me right now... so as a consequence, it's ok for them to take away my ability to buy insulin?!?!?! (even though I still had refills last time I checked?!!?)  I feel like some kinda junkie that is begging at Walgreens for something as essential to my STAYING ALIVE as air is to them.  I wonder if someone denied them water for a few days, if they'd be able to understand how this feels!!!

Luckily, I cried my way to urgent care and begged for a temporary prescription for Lantus so that I can live until I can find an Endo where I live now.  I am truly SICK to my stomach thinking about what happened.  So, somewhere along the line, it became ok to let someone die because they are having trouble making co-pays?  I've ALWAYS been able to pay for the insulin.

*sigh*

Sorry for the vent.  I suppose I will spend tomorrow on the phone with the offending Endo's office hollering until I am blue in the face.  And they won't care.  And life goes on.  And it's my birthday tomorrow.  pfffff...

~B~


(Julia1982) #2

becky, I am so sorry that happened to you. your endo must be crazy, what does he think you were just miraculously cured from this disease and don't need insulin anymore? when I turned 18 and moved out of my parents house their insurance dropped me, I was in a state of rebellion against my diabetes at this time in my life but I still took my insulin shots every day. with no insurance i was up a creek without a paddle. so what I did was I would save up a little money to just see a nurse practictioner and she would always write me prescriptions for everything I needed. but then it was give and take on prescriptions because a vial of insulin cost like $100. so I did stretch things really thin reused needles when I had to. it all sucked but what was I supposed to do?I had to live. also when things got really bad for me there is a free clinic in my town that gave me several bottles of insulin.  maybe you could see what they offer in your town as far as clinics like this. I hope these sugestions help.  take care and happy birthday.


(BeckyBee) #3

Thank you Julia for your suggestions and your kind words.  :)

~B~


(ruthyhill) #4

I guess it's appropriate to say Happy Birthday, right?  :)  Anyway, if things don't get better for you, have you tried checking out any research studies?  I am uninsured, and for the past year and a half I was on a study where they gave me free medication (and I still have about six months worth of supplies left :P), and I got to see an RN every three months and get my a1c done too.  Also, once you find one study, they'll tell you about others.  My RN offered me to participate in another one but due to school, I will not be able to do so.  What's good about these studies (other than the free medicine), is that at least for me, I felt like I got more attention with the RN and the other staff than I did with just the regular visits to the endo!  Again, that's just my opinion based on the hospital I attend.  Definitely seek all of your options... and yes, like previously mentioned, check out the free clinics if you have to as well.  Your health is the most important thing!

I do hope that everything works out for you!


(A-D) #5

Becky,

 

I can only begin to imagine the combination of frustration, fear, helplessness and rage that had to accompany that experience… Years ago (shortly after I got on Lantus) I went up to the HMO by my home because a house guest had accidentally bumped my last vial of Humalog onto the tile floor and it shattered.  It was 4:00pm on the Friday before Memorial day.  The pharmacy told me I was not due for a refill and that the doctor would be available Tuesday if I wanted to discuss it further.  They wouldn’t page her and neither would the main number.  They also wouldn’t issue the refill and wait for an order later (I asked).  I was informed it was not an emergency issue. 

 

Here in Ohio, NPH and Regular are not prescription items and I was contemplating switching back to that combination since I could buy them over the counter.  I was able to reach another doc and get a single order phoned into my neighborhood pharmacy…  All of this as a long way of saying, I am glad you got yourself covered, I am very glad you are okay and I am sorry to hear you went through this.  Being forcibly separated from our medication is its own special kind of torture and one which I am sorry to know you had to endure.

 

While you will need a doctor’s sign-off, I think Lilly may have some programs to help out with the cost of the scripts… It may be worth contacting them…

 

Best of luck and stay well!

 

A-D

Oh- and please don't apologize for venting - it is part of why we're all here!!!


(BeckyBee) #6

Thank you .. all of you!  :)  You guys have been such a source of strength with this and soo....

I took a step in the right direction today and instead of tearing strips off my old endo, (my plan yesterday.. hehe) I called around and found someone new.  I go on the 10th of February to see him and I have a plan.  I think I need to be very up-front with him and let him know my situation.. financial and 'pump-wise'.  I am happy with staying on syringes for now.. and when it becomes possible for me to get back on a pump, I will consider it at that time.  If that doesn't work for him, I will find someone else who it DOES work for. 

I really appreciate the input from you guys about ways around the expenses of all of this.  You've put my mind at ease (to say the least) for now. 

By the way, as I was mulling this whole thing over with my ex-husband last night, he reminded me that I had a similar up-hill battle finding a high-risk pregnancy doctor. (Can't think of the name for that.. perinatologist, maybe?)  The first 3 doctors I approached about working with me through a pregnancy told me they wouldn't even touch that.  "Oh diabetic women can't have healthy babies..." "All diabetic pregnancies either end in miscarriage or birth defects..." "why don't you just consider adoption and save yourself the heartbreak...".   It finally took the 4th one to agree to work with me and he was wonderful.  Now I have a wonderful, healthy little boy! 

I'm reminded also that we all have to be fighters and advocates for our own best care. 

*hugs* ~B~

 


(Kathy-Go-Girl) #7

What is wrong with these 'doctors'??  Seems like they are in it for the $$ and not to help people be well - hhmmm, kind of like insurance companies? 

I had the most wonderful OBGYN who worked with high risk pregnancies.  He taught me more about controlling my sugars than the idiot Endo did that I first started seing - needless to say, after my 2nd appontment with him telling me that I was lying about my sugars - he is H I S T O R Y!  It is very important for us to have Endo's that we feel comfortable with and they are not always easy to find.  Just like anything else in this world, the best things for us will not always be dropped in our laps.  Most times it takes a lot of hard work and some pain to get to the best road but it will happen if we hang in there!

So glad to hear that you are doing better!  I was surprised that you mentioned that you were discussing this over with your ex-husband...so glad that you can do that - only because if I shared anything like that with my ex-husband, he would have me in court saying I'm an unfit mother and would try to take my daughter away...he will use anything and everything against me so I can't talk to him about anything...not even something good because he turns it all against me somehow - but that 'stuff' is enough for a whole other website so I'll stop right there!  LOL!!


(BeckyBee) #8

I hear ya, Kathy.  I think that some Endo's do that 'I'm a specialist so I'm better than anyone else' thing.. UGH!!  Where would they be without our pancreases?  ;)

My ex husband and I have remained friends since our divorce (which makes it so nice for my little guy to not have to worry about us fighting).  He even kept me on his COBRA through work when we first got divorced (before I was working) to make sure that I still had health insurance.  The three of us, my son, my ex and I have had discussions about 'mommy's diabetes' and even got him a little book called 'It's time to call 911' that teaches little guys what an 'emergency' is and shows them how to dial a phone if they needed to .. and what to tell an emergency operator.  A couple of times he has seen me drinking juice and asked if it was time to call 911.  Hehehe..

I'm glad you found a good pregnancy doctor.  My previous endo, on my first visit to see him, said, 'You're the diabetic.  You know what you need to do.  Do it, and then come back and see me.'  *scream*

By the way.... do any of you know how I start my own blog on here?

~B~


(smartysb1) #9

I've had this kind of thing happen before.  I have always been frustrated with insurance, doctors, and pharmacists.  It seems as though they just don't understand the needs of the people who pay for their services.  The thing is, it's not always their fault.  The rules and laws that have been created don't help the situation either.  That being said, there are very few people in the medical proffesion that I trust.

I can not see the point in not allowing a diabetic to take their medicine when doing so will put them in the hospital and incur more expense than if they were simply able to take their daily insulin.  I have never understood why I have to fight so hard with everyone to get the care I need so that I don't have complications later in life.  Unfortunately, this seems to be the way the world works.  At least in America.  There have been times when I have needed an extra bottle of insulin because my blood sugar had run higher than normal.  I was unable to get it, because the prescription was only written for 3 vials.  The insurance companies give you no room for flexibility.  But with diabetes, you always have to be flexible.

How, if diabetes is one of the fastest growing diseases, have we diabetics who face this daily not spoken out and demanded change?  I have considered moving to a country with socialized medicine, but I honestly can't say I really know how that system works.

I completely understand your frustrations.  Most of us do.  It is neither fair, nor right, that we who suffer in body should also suffer in mind because of the stupidity, bias, and greed of others.


(Gina) #10

Hi becky,

We are working on getting your blog working. I will let you know...In the meantime if you have any questions you can email me from my profile!

~Gina


(kimgillam) #11

I also had trouble finding a Dr. when I was pregnant.  I had already had 6 miscarriages and one stillborn, but everyone has  aright to be a Mom if they want to.  My son is now 9 years old, he was in NICU for 28 days but he's nearly perfect now.  That's who is in the profile pic with me.  He is the reason I can get through each day.


(Kathy-Go-Girl) #12

Hi Kim, WOW - you have gone thru so much to get to where you are with your son...I'm very proud for you!  Kathy


(lucy12) #13

Becky,

I feel for you more than you can imagine.  From my horrible past experiences the best, and of course most time consuming, thing I've found in any situation involving the medical or insurance field is to call and write letters to EVERYONE.  Don't waste your time with customer service people who don't have the power to do anything...bug the h#$l out of Legislators, Presidents and CEO's of  medical clinics, Insurance Companies, State Insurance Commission, State versions of Medicaid...you name it.  I have bugged and cried to anyone and everyone.  Unfortunately yelling and making logical arguments don't seem to work with people...they just give the same old answers.  However, if you cause any inconvenience for the "big guys" they don't like it and will make sure somebody handles it.

When I lived in Arizona, my employer stopped paying for our health insurance without telling us which left me completely "screwed."  There was a long enough lapse that by law no one had to insure me.  It took me forever but luckily I found someone high up in their  State version of Medicaid who had diabetes and he "worked" the paperwork so I would qualify and be able to get my insulin. 

Currently, my endo. writes my monthly insulin prescription for more than I actually need each month.  Since insurance will usually refill one week prior to the 30 day mark, I manage to keep at least an extra vial or two at all times.  I'm terrified of ever being helpless with my life-line ever again.

Hope this helps.  If nothing else, know I'm thinking of you and sending my best wishes your way.

 


(dippydogd) #14

Hi there Becky.

What kind of pump do you use?  I was given some infusion sets from a friend's wife while she had gestational diabetes, but was fortunate enough that it did not develope into diabetes after the birth of her kids.  It is for the mini med.  Let me know if you are interested and I will send you what I have extra.