letter to Dr Robert Estupinan March 12, 2010

Dear Dr. Estupinan,

This letter is in regard to the certified letter you sent to me which I received on March 9, 2010 informing me  you will no longer to treat me as your patient, advising me I have thirty days to seek new medical attention, further you will only be available for emergency purposes during those thirty days.   When I read this letter, I immediately phoned your office and spoke with your nurse who explained to me “he does have the right to drop you as a patient if he feels your relationship has crossed the line” and suggested I contact Dr. Cuervo’s office, the neurologist you referred me to, and request a copy of the report he sent to your office.

I cannot begin to express to you my disbelief in what I have heard orally as well as, what I read in the report from Dr. Cuervo to you.  Dr. Estupinan, I have been a patient of yours for almost 2 years.  You have been treating me for my Fibromyalgia, Thyroid, Diabetes and Neuropathy.  You have me on a regular regiment of the following medications; Neurontin, Cymbalta, Vicodin, Synthroid, Metformin, Flexeril, Xanax and Phenegran for all of the above health problems and I do not have a clue as to why you would drop me from your roster. 

I was referred to see Dr. Cuervo for the neuropathy and the continuous joint pains that are getting worse and affecting me where I have lost feelings in both my hand and legs. When I saw Dr. Cuervo, I immediately liked him for the same reason I liked you, he is very direct, however, some of his remarks were insulting and with prejudice.  Without him asking me any questions, he immediately discussed my weight and how I need to have the lap band procedure done and how I eat too much.  I am willing to have the lap band, but I do have to wait until August. Again, he did not ask me what I ate that day, what I ate the night before. I am actually not a big eater, I eat the wrong things, and I understand that.  admitted, which I found incredibly hard to do, I do not know how to lose weight in the hopes he would recommend a nutritionist or dietician. In fact his report stated he advised me to eat a diet of fruits, vegetables, low fat milk…. This is untrue, instead he said to me “Stop eating, no one ever came out of a concentration camp overweight.”  Never in my wildest dreams would I expect such poor professional treatment and lack of professionalism from a doctor to a patient.  People are not just prejudice towards color, and the comments he made about my weight and the concentration camps were so insulting and very much taken to my heart.  Some of my family is Jewish, their relatives were in a concentration camp,  escaped with one of their children and the three other children were killed so yes, this touched home very much and not in a good way at all and I cannot just accept this behavior.

Dr. Cuervo advised me the EMG test I was given at Watson Clinic by Dr. John A. DiLullo showed no neuropathy. I feel like I have been getting the run around and after this new information from Dr. Cuervo I do not understand how I have been diagnosed with neuropathy and been giving medication for neuropathy, first by a pain management doctor; Dr. Pruitt, and confirmed by the neurologist, John A. DiLullo. Aren’t Dr.’s DiLullo and Cuervo reading the same test results and how do they both find different answers and where does your professional opinion come into the picture?  Instead of continuing to work with me on the problem, and knowing I have taken all of Dr Cuervo’s suggestions, I plan to have the carpal tunnel surgery in August. Dr Cuervo advised I was wearing the splints too tight, that’s why they were hurting, so I wear them now looser, and they are fine. He also explained about the morning testing, why it is important, therefore I have been testing every morning, and keeping a log. His assistant asked me about the CPAP and I explained I have problems with my sinuses which the CPAP increases. Dr. Cuervo didn’t mention the CPAP to me, but his assistant said I should speak to you about alternatives, which I planned to do.

Since I have seen you I have shared a lot with you regarding my life and how my physical problems have deteriorated my quality of life.  I always thought we maintained a very good rapport and I can’t begin to tell you how many people I told about you.  I could have really given up, but I didn’t. I am doing everything I can, but I am also limited by insurance at this time.

Respectfully,

Michele Kellenbenz

Cc: CEO - Jack Stephens; CIO - David Henson; President - Scott Swaggert; Board Member - Elisabeth Dupont; Partner - Annette Barnes; VP - Robert Buccino; VP - Robert H. Chapman; Dirctor of Clinical Services - Elaine Bertles; Executive Director - Louis Saco; Medical Director - Helen Mahias – Cherry; Human Resources Manager - Angela Rossiter; Manager of Patient Relations - Shane Turner; Neurolgist - Dr. John DiLullo; Pain Management Dr. - Dr. Michele McPhail – Pruitt; GP - Dr. Robert Estupinan; Neurologist - Dr. Herminio Cuervo

Dropped like a bad habit

Today I received a letter from my primary care doctor releasing me as a patient. He said he is giving me 30 days notice to find a new doctor during which time he will only be available for emergency purposes. Now me, I liked this doctor, he's straightforward, I like that.
I called his nurse she said she was out last week so she had no idea but if I would hold on she would check. She said "Dr. Estupinan received the notes from the neurologist, Dr. Cuervo, and made the decision himself. He can do that if he feels the relationship has crossed the line." I have no idea what that means. Makes it sound like I hit on him or attacked him. I haven't seen him since I saw the neurologist. The nurse further advised I should call Dr.Cuervo's office to get a copy of the notes from the visit. I called Joy at Dr. Cuervo's office, by the way she is the sweetest lady ever. She is mailing me the report.
Maybe once Dr Cuervo said it's not neuropathy, and Dr Miller had already said it's (the inflammation and pain in my hands) isn't the problem that he didn't know where to go next. I know I have to go to the hand specialist and have my carpal tunnel operated on, but I have to wait till we have full insurance in August. I think it may come across some that I don't care about my health or whatever but with this limited insurance plan and our finances there are limits to what I am able to do until August.
Just frustrated and confused kind of day!

Bipolar / Fibromyalgia Roller Coaster

Last Thursday I realized I was out of cymbalta. I knew that I was getting closer and had checked at the medical center with the prescription assistance program to pick up my refill while I was there to see my Dr. Unfortunately the woman, Sheila, who works in that department was out. I assumed her department was closed on Friday and decided I would pick my meds up on Monday. I am lucky enough to get free medication through Lilly Cares. I was under the impression that the medicine was automatically sent to my Dr, or in this case, the prescription assistance department at our medical center so I could just go pick it up. 
Monday morning 9 am I called Sheila in the prescription assistance program at Watson Clinic here in Lakeland. Sheila informed me she doesn't have anything for me, she didn't give me my last supply 4 months ago (funny because that is where we picked it up). So I called the nurse at Dr Estupinan's office. She said I needed to call and speak to Sheila, I explained that I already did. She told me to call her again because the doctor's office is not responsible for prescription assistance, so I called Sheila again who told me I am not her patient, not her responsibility. 
I called Dr Estupinan's office back. Spoke with the nurse again, she said though they do not get involved in prescription assistance normally she would call Sheila. In the meantime she could call me in a prescription to my pharmacy. So, I went to Target, waited 45 minutes for the pharmacist to come back from lunch and sign off on the prescription, and was given a bill for $135. If I had $135 for a month prescription I would not be getting free medication from the manufacturer.
Fri / Saturday I was up for 36 hours and slightly manic. Then slept about 24 hours on and off with the help of xanax. Monday up again another 36 hours. My husband came home to find me sitting in the closet. I don't know why, I started out cleaning it but when he got home I was just sitting there opening and closing the snap on this little purse over and over. Then the shit really hit the fan. Off to Walmart at 2 a.m. to pick up new work boots and gloves for my hubby, he had a hole in his. I picked up some travel size containers and some containers for my chocolate body scrub, plus some fantastic pink tissue paper with polka dots and black gift bags for the bachelorette party. I came home, made the "hangover kit" bags to go in the gift bags and the "barf bags" (for cookie tossin) that go in the hangover kits. Then I put the gift bags together. Made some necklaces for prizes. And, waited for 9 am to run to Joann's to get bobbins for my sewing machine, and to Michael's to get spray glue. 
I finally fell asleep about noon with the help of more xanax. I woke up about 9 pm to a major fibromyalgia flare. EXTREME PAIN AND EXHAUSTION. 
24 hours ago I couldn't stop functioning now I can't move. But, I can't sleep. My insides are bouncing off the walls while my "outside" is on a pain scale of 1 to 10 at least a 9.5. The worst thing is I know as soon as the fibro flare settles down I am going to be manic again, then flare again, then manic again. Is this what hell is like?
You can not simply go off a medication like cymbalta. The nurse won't take responsibility, Sheila won't take responsibility. I am going to call today at 9 am someone better have gotten off their ass or I'm calling my disability lawyer. Maybe they can help. Because I am freakin miserable.

NOT Neuropathy??

This time frustrated doesn't even begin to cover how I am currently feeling. Monday I went to a neurologist, hoping and praying to finally have some answers on how to help reduce the pain and inflammation in my hands. Seriously, I miss my job, and want to get back to my life!
Help, I got, but not what I was expecting. Last year my pain management doctor had a neurologist at Watson Clinic (an enormous medical center here) run an EMG test on my hands.The new neurologist told me the EMG tests showed NO neuropathy! WHAT???!!!! I knew the test showed some carpal tunnel in my right hand. I was told the CT was caused by the neuropathy and that it would just come back. After my thyroid surgery I was not ready to have anymore surgeries anyways. Plus the CT doesn't cause the type of pain I have, nor is it supposed to cause inflammation in the knuckles. Further, both the pain and inflammation are in BOTH hands and the CT is only in the right. 
I am so totally lost and frustrated. I will be calling my GP for an appointment on Friday to start this process all over again. They had previously ruled out rheumatoid arthritis as those test results were negative. This started over 2 1/2 years ago now. It took a year for the neuropathy diagnosis, and I thought we were getting somewhere then. Now I am back to square one and would like to crawl in a hole and bawl my eyes out. 
For all those idiots out there who still think there is nothing wrong, I may be able to fake pain, which I can assure you I am not, but I certainly can not fake the inflammation.
If anyone has had similar problems please let me know. Thanks! chele


p.s. I have the same problems in my feet.

Worries, silly worries

So I have 41 days to my big vacation. Where am I going? Did you see The Bachelor this week? That is where I am going! St. Lucia! My cousin is getting married there on April Fools Day. Does that mean it's foolish to get married? Possibly, but hey it turned out well for me so far! Anyway, my best friend and I are heading to the Caribbean for the wedding. Four nights and 5 days. I am extremely excited, yet more and more worried the closer it gets also. Here is what happened that has me so freaked out...
December 23 I spent the afternoon baking muffins and wrapping presents. December 24 I was gone from home about 8 hours. By 6 pm on Christmas Day I dozed off in a crowded room of people, and my husband's family is LOUD. I snuck off and crawled into one of the guest bedrooms at my mother in law's house. I had planned to stay the night anyway, but not to be asleep at 6 p.m. or sleep 16 hours. Obviously I had overdone it. But, I still don't feel as if I did. Baking muffins is the simplest chore ever, Christmas eve I was gone quite a while, but I was just sitting around hanging out, not running around.
My worry is, if this little can wear me out how am I going to be on the trip? The first day is the biggest, I have to be to the airport at 5:30 a.m. We arrive in St. Lucia at 1:30 then once we check in at the resort's desk at the airport we have an hour and a half drive to the resort. By then it will be 3:30. I am praying for time to take a nap then a long shower. That evening is the rehearsal dinner, and the bachelorette party (which I am excited to be cohosting, it's my first!!). So that first day is going to be a long long long one.
The next day, fortunately, we can sleep in the next day and lounge around the pool as the wedding is not until 4.
Friday, we leave at 8 a.m. for an 8 hour tour. The tour is a land & sea tour. We start and end on a catamaran including snorkeling with the fishies.This is going to be a long day. I am so excited about the tour and am praying it is not too much for me. If it is, I am sure I can get a cab back to the resort. But what a disappointment that would be!!
Saturday I think we are going to venture off to the Castries Market, it is 100 years old!! Other than that, Saturday is really going to be another relax by the pool day.
Hopefully fitting "relax" days in between the busy days will help. Does anyone else have any other suggestions?

Almost Back

Forgive me, I know it's been a while and I am almost back. I can already feel the "seasonal depression" hell starting to lift. I'm not sure why but my grief this year has seemed worse than ever.
The New Year itself is starting off with a bang, or maybe that's a bust. Christmas Day I was passed out cold by 6:30 at my Mother In Law's. I slept for 14 hours, and woke in the midst of one of my worst fibro flares ever. Aching doesn't really seem to describe the pain in my extremities, especially my arms. And, the exhaustion seemed like it would not end. I came out of it about 5 days later only to find the neuropathy in it's own flare. My hands and feet were incredibly painful and burning. I also have seemed to lost quite a bit of feeling in the tips of my pinky and ring finger on my left hand. I am finally showing some signs of having knuckles again. I am not sure why my hands have been so inflamed, even using my voice recognition program this si the first I have really used the computer in a few weeks other than to do some reading. I have finished all 17 books of the Laurell K. Hamilton Anita Blake Vampire Hunter series, and am now on book 7 of her Meredith Gentry fey series. Both are excellent. One would not think that simply scrolling down with the mouse could cause such pain and inflammation, apparently it can.
I am thrilled that in spite of the pain of the season I really did have a great Christmas and a wonderful New Year's Eve with my hubby. I hate that being able to have a little fun requires such a painful and exhausting payment. I am worried about my vacation the end of March. 4 nights and 5 days in the Caribbean for my cousin's wedding with my best friend. I am excited, and yet scared at the same time. Scared of the flare it will cost me.

Hibernating

I'm sorry I have been AWOL the last few weeks, this usually happens to me about this time of the year. I have depression but about mid October it gets a lot worse. And this year I mean about ten fold. The doctor's call it seasonal depression in addition to the severe depression I already have, but it's not really. It's not the holidays. It begins right before my birthday or right after, depending sometimes. And then it starts. You see from end of October till mid January is the anniversaries of literally all the deaths of people I have been close to that have passed away, and also their birthdays. This may sound strange to say but not a month after our wedding my husband's step father passed away, the beginning of December. I seriously thought I had brought my family's curse with me, and the curse was spreading to my new family also. I know that is ridiculous but 4 years ago we lost my Grandma Oct 30, and this Christmas Day it will be two years since we lost my husband's Grandma. It seems it's about every two years we lose someone. My Dad and Grandma were the two most important people in my life. I am missing them this year more than ever, lots and lots of tears almost everyday. 
I realized a few years ago how down I get this time of the year, my Dr always gave me xanax to help me get through. Even before I realized though I would become very down about mid November till mid January. After Grandma passed the period got lengthened to mid October - mid January. Then a few days after Grandma's birthday in January I am miraculously better. Used to be back to my happy go lucky self. 
I wonder does bipolar change? I mean I used to be mostly up with some shorter periods of depression (not including the 3 month "seasonal" depression). Now (before the seasonal kicked in), I am down most of the time with few up times, and those up times are usually pretty recognizable as hypermania, because they are short lived periods (a day or two) of extreme energy and creativity.
My real point of all this was to apologize to anyone who reads my ramblings regularly (thank you by the way) for my disappearance. I will try to be a little better, but it is going to be pretty rough for me for a little over two more months. Just hang in there with me, I'm holding on by a thread, hold on too. Thanks. love from chele