Vacation Planning

I'm a planner, frankly I'm a little obsessive, especially when it comes to vacations. For example, when I went to New York with my friend, Aleta, we made a list of where we wanted to go and mapped it out. That way we could see things that were in the same area on the same day.And, yes, we had a time schedule, a rough one, how else to fit everything we wanted to see in such a short amount of time? Makes sense, right? My husband is the opposite, he doesn't understand why I can't go with the flow.
As usual, I digress. I am leaving in approximately 24 hours to go to St. Lucia for my cousin's wedding. I can honestly say I do not have everything timed out. I have a rough idea of what we are doing. Arrive Wednesday afternoon, hopefully nap, then dinner, and then the bachelorette party.
My biggest worry with this trip has been a flare. Wednesday alone we leave at 4:30 a.m. for the airport, international flight = arrive 2 hours before the flight, right? We arrive St. Lucia at 1:30 their time. Grab our bags, hopefully don't get questioned by the customs agent for the fur lined cuffs or edible panties in my suitcase (gag gifts for the party, I SWEAR). Then find the Sandals desk and take a hour and a half ride to the resort. I'm guessing that should put us to our resort by 3:30. Hopefully this will mean time for a short nap, as my best friend has to take a quiz for school online at 7:00 p.m. Then, like I said dinner, and bachelorette party. What I'm trying to say is, it's going to be an extremely long day.
I've been trying to prepare ahead of time so I will be less stressed at the last minute. My suitcase, and I mean this truly, has been packed for a month. Hey, I bought some new clothes and felt it was the safest place to avoid pet hair :). I have one entire suitcase of stuff for the party, gift bags, prizes, etc etc. Today I whipped some of my sugar free banana nut muffins together for the girls. Two of my cousins will be on the same flight as my best friend and I so I promised them all homemade banana nut muffins for the early morning flight. If you haven't tried my muffin recipe yet, you ought to. Seriously it's the easiest thing to make. I have a kitchen aid stand mixer. I dump the ingredients in it one at a time and it does the rest. Therefore, it's incredibly easy, and not taxing on me at all.
I think the most important things you can do to help yourself if you have a chronic illness and are going on a trip is planning.

1. Make a list of what to pack. If you aren't going to wear it between now and the trip. Put it in your bag and check it off your list. 
2. Once you have a list of what to pack, you can make a second list of things you need. For instance, I needed batteries, pantyhose, travel size containers.
3. Make up your containers, and mark them. Put them in a ditty bag or a ziplock bag. 
4. A week before check all of your prescriptions. Make sure you have enough, if not call for refills. If you have new bottles of medications then, and don't need them until the trip, pack them in your carry on.
5. Make your carry on easy. I am checking my bags, except for a backpack with wheels. The backpack carries my medications, my cameras, my snacks, and even my purse.
6. Pack some healthy snacks, especially if you are diabetic. Unless you have been to the location before you really won't know what you will encounter food wise. I have some trail mix packed, and my best friend is bringing almonds. Both low fat, low sugar, low carb treats. 
7. Plan rest. I know I have to nap on Wednesday when we arrive, it's imperative. I know Thursday the wedding is at 4 which gives me all day to sleep and lay by the pool. Friday is a tour. Saturday is another part rest, part fun day.
8. Enjoy yourself. You now you are going to be overdoing it. Seriously, it may as well be worth it!

10 Things You May Not Know About Diabetes From the Joslin Diabetes Center

I talked to my aunt today (who is really a wonderful lady!) about my diabetes. She is a nurse. I do not know how I didn't know this previously but she used to work at a diabetes center and was in charge of patient education. I was explaining I need help with my diet, not diet as in dieting, as in what to eat based on the diabetes and my likes and dislikes. I also told her what the neurologist had said about me eating too much, without asking how much I eat, or what I eat, and about him saying to "stop eating". She said that wouldn't be good for you either. I told her what I eat in a typical day, she said that I actually probably don't eat enough. She said that may sound crazy, it did to her when a doctor suggested the same to her, but if you eat too little it really messes with your metabolism. She suggested a website by The Joslin Diabetes Center, www.joslin.org. 

1.  About one third of all people with diabetes do not know they have the disease.

2.  Type 2 diabetes often does not have any symptoms.

3.  Only about ten percent of all people with diabetes have type 1 diabetes.

4.  Type 2 diabetes can be prevented with moderate weight loss (10-15 pounds) and 30 minutes of moderate physical activity (such as brisk walking) each day.

5.  The meal plan for a patient with diabetes isn’t very different than what is recommended for healthy people.

6.  Diabetes is the leading cause of blindness in working-age adults.

7.  People with diabetes are twice as likely to develop heart disease than someone without diabetes

8.  Good control of diabetes significantly reduces the risk of developing complications and prevents complications from getting worse.

9.  Bariatric surgery can reduce the symptoms of diabetes in obese people.

10.  The indirect national cost of diabetes in 2007 was 174 billion dollars.

Blood Sugar Log

I've been looking all night for a blood sugar log or program, something for my Sprint Samsung Instinct S30. I didn't find anything compatible let alone free. So I got some help with the typing and made one in Excel. Here is a snapshot:

On the side there is plenty of room to write notes about pain levels, exercise, whatever. My plan with this is to keep better track of not only my blood sugar, but how certain foods, meals affect my blood sugar. Plus, I can keep track of my pain levels. For instance, I wrote "drove to grocery store, pain in right hand". Today, and really the past few days I need to make a note about severe, premenstrual sciatic pain. This seems to be getting worse every month. Intense pain from my hip through my lower back, left buttock, down my leg, through my knee joint, through my ankle (which my ankle is seriously messed up on it's own), right down to my toes. Unfortunately I sent the ibuprofen to work with my husband. I have read somethings tonight that are a little concerning, it seems the biggest cause of this is endometriosis, when the sciatica coincides with a menstrual cycle. UGH this means a visit to the chick doctor, blah, lol. I'm a little worried about this bout of sciatica being just 6 days before my vacation. But, my point IS I will have it noted on my spreadsheet, a printable spread sheet that the doctor can see about what I eat, how my blood sugar levels are, and even where my pain levels are and what sets off the pain if anything. OF COURSE my columns are pink, but isn't that to be expected. Further, anything that sets off my blood sugar is highlighted yellow. You can see easily I had chicken breast with white rice, slivered almonds, and a spicy mango sauce (which is out of this world) and my blood sugar was up to around 186. I may try it again, but with brown rice, and a little less of the sauce, maybe some green onions. I love green onions, so did my Grandma. Whenever we went to a restaurant that had a salad bar she had us sneak her a few. I prefer mine cooked in things, most anything. My orzo recipe, stir fry, etc.

P.S. I have an appointment with a new doctor, recommended by my friends, sisters who have lived here in Lakeland all their lives. His name is Dr. Adam Parker. I am hopeful because there is a page on his website about inflammation, and a picture of a swollen foot.
http://www.trinityprimarycare.com/Inflammation.aspx 
Plus, and this may sound weird but he is a little young. The last doctor I saw who was that young was a pitbull. I still love her, she is the one who diagnosed my fibromyalgia, and she is not one to give up until she finds an answer. Her name is Dr. Maria Christina Pantaleon, she has offices in Palm Harbor and Clearwater, and when I move back to that area I will be ringing her number for sure so if you live in that area, check her out. Tell her Michele McNett Kellenbenz still thinks she is the best doctor 12 years later, and I have highly recommended her!

Doctor Plan

Do you think it's possible to treat an initial visit of a new doctor like a business interview? Maybe even use something similar to a business plan?
For instance, using a business plan format. A mission statement or vision statement, and objectives.

Main current concern:

My hands. I’ve had fibromyalgia for 15 years. It was tough, but I smiled and worked through it, sometimes 50 hrs a week, and went to school part-time. The FM is not what keeps me from working, or caused me to stop working, it’s my hands. I used to type 8-10 hours a day. Now I can’t type one page without having sharp pains in my hands. If I press further, I start having electric shock like pains in them. And, not just the right hand where the carpal tunnel is, BOTH hands.

Objectives:

1. Confirm diagnosis (given the conflicting diagnoses over the SAME EMG test).
2. What to do about the damage that has already been done. Can it be improved? If yes, how? 
3. Is there an alternative to a CPAP machine for sleep apnea? I have chronic hayfever, and sinus problems, with moderate dryness. The air, even the CPAP with the humidifier, seriously increases this problem. 
4. I need someone to teach me how to lose weight. A dietician or a nutritionist someone who can work with me on healthier alternatives, taking into consideration my health problems, and even my likes and dislikes. 

Full list of Symptoms: 

Inflammation hands
Pain in hands: aching, sharp pains (worse after for instance typing one page), next comes electric shock like pains
Pain in toes and feet, aching, rarely sharp
Inflammation in feet
Decreased feeling in hands and feet
Low grade fevers
Rash on scalp, back of head with low grade fever
Sensitivity to touch
General aching over entire body, worst left shoulder, down left arm, hands, feet, left chest
IBS
No BM for 3-4 days
Constant fatigue

5 Minute Microwave Chocolate Cake

this is surprisingly light, fluffy, and good

In a coffee mug:

mix:

4 tbsp self rising flour

4 tbsp sugar or splenda

2 tbsp baking cocoa powder, like Hersheys

add 1 egg, then mix again

add:

1/2 a cap full of vanilla extract

3 tbsp milk

3 tbsp vegetable oil

3 tbsp chocolate chips (optional) or nuts or both!

microwave on high for 3 mins, let rest for 2. Cake will rise to the top of the mug. Top with your favorite ice cream or whipped cream and enjoy!

rough night

all of this stuff with the doctors has really set off a bad Fibro flare. So I am stiff and sore and exhausted. Writing that letter over the past two days has set off a terrible flare in my hands. I should have used my voice recognition program, but I'm stubborn, so I didn't. I wrote the first page on Saturday, and before I could finish my left hand was experiencing sharp stabbing pains. That hand is not even the one affected by carpal tunnel.
I updated the letter yesterday. Both hands are in inflamed, the carpal tunnel and my right wrist, is really pulling, and I am experiencing severe pain in both hands. For some reason, my toes are killing me too. I wonder if a flare in the hand neuropathy sets off the toe neuropathy or if they both have to flare at the same time? And why do the fibromyalgia and neuropathy seem to flare at the same time?
I feel so useless today. I like I said, I am stiff, sore, my toes, and hands are in incredible pain, frankly my spine and hips aren't too happy either, it's hard to accomplish anything laying on the couch! Ok enough of this I am going to start a new more positive (I hope!) post!

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.