Not Neuropathy for sure

Well, I guess I will have to change the name of my blog. I do not have neuropathy. The nerve conduction tests were negative. Apparently the original ones I had done were too. That was a year and a half ago. Damn, I knew that neurologist I went to back then was awful. I really hated going to him because he never answered questions.Almost 2 years of my life we could have spent figuring out what the real problem was. Maybe  2 years less of suffering.
My new primary care doctor is really wonderful. Her name is Dr Brvenik. She is the kind of doctor you want to have, a real bulldog. I mean that in the best possible way. In fact, what I mean is she is the type to not settle until she finds the answer. For example, my shoulder has been giving me problems for almost 10 years. Every doctor I have told previously has brushed it off, until her. MRI shows bulging discs in my neck causing nerve pain in my shoulder down my arm, severe pain at times, just like sciatic but in shoulder down arm instead of butt down leg.
She also insisted on a full physical including pap and breast exam. Breast exam found a lump. Now, I've been through two mammograms and an ultrasound. The lump is probably just a cyst. But, she is sending me for a needle aspiration to be sure. I am 99.9% sure it is just a cyst and sure is she, but it doesn't hurt to be sure. The whole thing, having to wait over the weekend for the result of the second mammogram, set off the worst flare in my life, nothing like I have ever felt before. Excruciating pain in my arms, from the top where the shoulder joint is to my fingertips. Extreme weakness in them, and tender. Two days later the pain had narrowed down to "just" my joints. It's mostly gone now except some overall weakness from feeling so bad all week, and really bad left shoulder pain from the bulging discs.
Dr Brvenik is trying to get me in to see the rheumatologist now to be tested for lupus. The only problem she says is lupus is extremely hard to diagnose. For example, the blood test can come back false negative, and often does. I know I was checked for it at some point. Either 3 years ago or 10 years ago. And, it was negative then, but could still be positive now. I don't even know what lupus means, except I know that one of the first signs is inflammation in the knuckle area of the hands. That I've had forever, years, like 7-10 years, before the pain started. I had it so long I just thought it was some odd quirk since there was no pain.
So, Friday will be a big day for me. An appointment with the hand surgeon for a consult regarding carpal tunnel in my right hand, an appointment with the general surgeon for a consult to have the breast needle thing, and an appointment with the orthopedist for the bulging discs in my neck.
Wish me luck!!

Big Day Nerves

Tomorrow is a big day, guaranteed no sleep tonight. Start the morning off with a spot mammogram. If you don't know what that is it's a magnifying mammogram (I had to ask :) ), then possibly an ultrasound. My husband has to work so my best friend is taking me. Probably better, he'd keep asking "what's wrong?" and say all the absolutely wrong things. He tries, and he means well. After the mammo I will send her off to work, then off to the neurologist for my mri and emg results... more fun. I'm hoping he will have a definite positive yes or no this is neuropathy or it's not and they keep looking. From the previous neurologist I know I will need carpal tunnel surgery, but that's ok, I just don't expect it to fix everything though. That may sound pessimistic, but it's not. My reasoning is because the pain in my hands is the same in my feet and toes, and I know THAT'S not carpal tunnel, lol.
oh well, I guess I should try to lay down for a little bit.

50 Fabulous Food and Recipe Links For Diabetics

A reader named Bobbie sent me a link to this article. I haven't had time yet to really delve into it, but I thought I would share anyway, it looks like there is a wealth of information.

As a nurse, you will definitely encounter patients with diabetes. In fact, according to the American Diabetes Association, over 23 million people in the United States have been diagnosed with diabetes. This doesn’t count all the people who haven’t been diagnosed or who are at risk for diabetes. Diabetics need special guidance when it comes to diet and nutrition. Luckily, the Internet has made it easy for diabetics to access healthy, delicious recipes as well as learn about their condition and the way they should eat. Here are 50 fabulous food and recipe links we’ve found around the ‘Net:

Diet and Nutrition Infromation

These websites provide general information on a proper diabetic diet. Learn about different types of diet plans that diabetics use to manage their sugar intake.

1. Januvia : Merck’s Januvia website has good tips about healthy food for managing diabetes, as well as a recipe tool and favorite food analyzer. Free registration required to access some tools. 2. Simple Wins: Nutrition : The Bayer website has nutrition tips, healthy cooking videos, and other good resources for diabetics. 3. Tudiabetes.org : Tudiabetes.org is a great resource for anyone with diabetes, combining the wisdom of a large group of diabetics with excellent articles. 4. ADA: Food & Fitness : Learn about proper nutrition for diabetics on this website of the American Diabetes Association. 5. MedlinePlus: Diabetic Diet : Medline Plus’ website gives simple, easy-to-understand information about the proper diet for a diabetic person to follow. 6. X-Plain: Diabetic Meal Planning : The X-Plain interactive tutorial gives you tools and information on planning healthy meals. 7. Accu-Chek Connect : This page provides supportive information for diabetics who feel they need help with their eating habits. 8. MayoClinic.com: Reading Food Labels : This helpful article tell diabetics how they should read food labels in order to make the right choices. 9. Reader’s Digest: 10 Super Foods : This attractive slideshow features 10 foods that diabetics should incorporate into their daily diets. 10. BD: Fast Food Guide : BD Medical Supplies offers this extremely helpful guide to your favorite fast food restaurants from a nutritional perspective, so you can see just what you’re getting into. 11. Foodpicker.org : Foodpicker.org follows the guidelines of the American Diabetes Association in order to help diabetics make better food choices. 12. Buffet Tips For Diabetics : The National Institutes of Health offers this article to help people make the right choices when offers with a whole buffet of options. 13. Joslin Diabetes Center : The Joslin Diabetes Center offers great tips on keeping portions controlled, as well as other healthy eating strategies. 14. Joslin Diabetes Center: The ABC’s of Sugar Substitutes : With all the sugar substitutes available on the market, it’s easy to get confused. This article compares sugar alcohols and artificial sweeteners. 15. Mayo Clinic: Exchange Lists : Learn how diabetic food exchange lists work to help you stay on the right track with your eating plan. 16. Ready, Set, Start Counting! : An easy-to-read guide that teaches patients how to count carbohydrates in a healthy diabetic diet. 17. Diabetes Fact Sheet For Child Nutrition Professionals : This article provides guidelines for food service workers who work with children that may be diabetic. 18. MyFoodAdvisor : The American Diabetes Association provides this excellent website with tracking tools, recipe finders 19. WebMD: Diabetes Center : Learn all about the basics of a healthy diet for someone with diabetes. 20. The Exchange List System for Diabetic Meal Planning : The University of Arkansas Family and Consumer Sciences department provides this helpful guide to using exchanges for nutritional management of diabetes. 21. The Idaho Plate Method : The Idaho Plate Method is used to help teach diabetics about proper portion control and correct nutrition. 22. The DASH Plan : The DASH Plan is designed to help people who have hypertension, or high blood pressure. 23. Treatments For Hypoglycemia : This web page gives examples of foods and quantities of food you should eat if your blood sugars get too low. 24. Eating Healthy On A Budget : This page gives you simple strategies for planning your meals without spending too much money on food. 25. Fruits And Veggies Matter : The CDC’s website encourages people to eat their fruits and vegetables for better health.

Recipes For Diabetics

These links will give you access to thousands upon thousands of recipes for diabetics. Some websites rely on user-generated content, so the nutritional information may not be exact.

26. Top 20 Diabetic Recipes : Allrecipes.com is the favorite website for millions of home cooks. On this page, view the 20 most popular diabetic-friendly recipes that have been submitted by home cooks. 27. Recipes From MyFoodAdvisor : This link features recipes searchable by calorie content, carbs, fat, and other nutritional data. 28. Diabetic Gourmet : Diabetic Gourmet Magazine has literally thousands of diabetes-inspired recipes in every category from appetizers to desserts–even breads! 29. MayoClinic.com Diabetes Meal Plan : Delicious recipes featured on the Mayo Clinic website included chipotle-spiced shrimp and almond-apricot biscotti. 30. dLife : dLife has a selection of hundreds of “diabetic-approved” recipes that you can search by carb content, main ingredient, course, and other options. 31. Type 2 Diabetes Guide on About.com : The Type 2 Diabetes Guide on About.com has links to several different recipes for your enjoyment. 32. Diabetic Living : Diabetic Living, part of the Better Homes and Gardens network, is a site that includes many tips for healthy eating and recipes that sacrifice added sugar without losing flavor. 33. Bob’s Diabetic Recipes By Category : Bob’s website may not be pretty, but it sure has a lot of diabetic recipes! 34. Dave’s Garden : Dave’s Garden is a recipe site that has 72 user-submitted diabetes-appropriate recipes. 35. Diabetic Recipes : Over 800 diabetic-friendly recipes are included on this website, including menus for special occasions and foods that kids will love. 36. Kraft Good Eating, Good Living : This free website from Kraft gives registered users access to recipes tested by Kraft nutrition experts as well as money-saving coupons and recipe videos. 37. Meals For You : Meals For You has been providing over 6,000 nutritionally based recipes online since 1996. You can search meals by several different categories and view nutrition data for each one. 38. NewWellness: Crock Pot Recipes : This website has many diabetic-friendly recipes that feature a slow cooker. This way you can start dinner in the morning and have it finished when you get home from work. 39. CookEatShare : CookEatShare has over 1000 recipes for people with diabetes. Watch cooking videos and share your favorites. 40. EatingWell : EatingWell emphasizes the fact that diabetics don’t have to exclude certain food and they don’t have to sacrifice taste. By eating fresh, wholesome ingredients, they can eat healthy and feel indulgent. 41. ADA: Recipes : Access many delicious recipes that are sure to keep you eating right on the ADA website. 42. Food.com : At Food.com, you can find over 9,000 recipes that have been tagged “diabetic” by users. These have not all been reviewed by a dietician, so they are not guaranteed to be low glycemic. 43. ChildrenWithDiabetes.com : Cooking for kids can be hard in and of itself, but when you have to please a diabetic child, it can be even more difficult. 44. RecipeSource : RecipeSource has a wide variety of recipes for diabetics, over 700, in fact. Search by keyword to find your favorites. 45. Easy Diabetic Recipes : This page has a lot of advertisements, but it also has links to many recipes for diabetics as well as photos of the food. 46. Tasty Recipes For People With Diabetes and Their Families : This 31-page free eBook from the National Institutes of Health is jam-packed with healthy recipes, many with a Latin flair. 47. Recipe Trove: Diabetic : Recipe Trove features three decadent desserts that diabetics can enjoy in moderation. 48. Cooks Recipes : Cooks Recipes features over 100 recipes for low-sugar and low-carb breads and muffins on their website. 49. Dreamfields Pasta : Dreamfields Pasta has resources for pasta dishes that diabetics can safely enjoy. 50. OpenSource Food: Diabetes Diet : This website features good links to diabetic recipes as well as tips for diabetics who are trying to eat healthier.

I Scream, You Scream, We All Scream...

I've had the best time the past few weeks creating ice cream concoctions for my cousin who had jaw surgery. Can you imagine not being able to eat solid food for 90 days?? count me out! I went through something similar years ago when I had jaw surgery for TMJ, but I my recovery time was much shorter, even though I had a hell of a lot more swelling, and am darn irrationally jealous of that! As usual I digress
I was saying my cousin is enjoying the ice cream. Plus, she told me the cold from the ice cream is the only thing providing her any relief from the pain. She's a really tough cookie, the backbone of a family of 7 kids. She's the oldest and acted as a second mother to her younger siblings through some very tough times. It has been very hard to see the strongest person in my family so weak and in pain. I am very glad I moved home just in time to be here for her.
I found a few really great books for ice cream recipes. My favorite one is called The Perfect Scoop. The book not only provides recipes but quite a lot of detailed information. I checked it out of the library but I'm going to have to buy my own copy, it's too valuable of a book, information wise, not to if I plan to keep making ice cream, and frozen yogurt. Not to mention there is a recipe in there for some kind of frozen mojito that I think is going to require a girls night with my best friends.

Strawberry Shortcake Ice Cream Recipe

I've been wanting an ice cream maker for forever. Our grocery store, Aldi, had one last year for $20. They are offering it again this summer. My best friend bought one and is keeping it at my house ( :) ). I try to have her and our other best friend over for dinner every few weeks. Everyone can use the ego boost those two women can give someone with the fawning they do over my cooking. Last time I made chicken cordon blue burgers and home made french fries. The burgers are simple I took my basic chicken burger mixture, ground chicken, grated zucchini, and a little salt. Made patties, and put them on the George Foreman. Once they were mostly cooked I added a slice of baby swiss, and a slice of ham. I bought crusty rolls from the bakery covered them with honey mustard and a slice of fresh tomato. They were good.
I like to cook but I also realize I need to make things I can do ahead of time or are simple. Tonight's menu will include a simple iceberg lettuce wedge salad with doctored blue cheese dressing, pork chops, and pesto risotto, and strawberry shortcake ice cream. The pesto was made and frozen a few weeks ago, the blue cheese was doctored Saturday night, and the shortcake was cubed and frozen then also. I just made the ice cream, yes at 4:30 a.m. The pork chops will be simple salt, pepper, garlic, olive oil and a frying pan. Risotto is easy too. Granted, I have to pull my stool up to the stove to stir it for a while, but it's simple.
Back to the ice cream maker, it is an electric one that doesn't require ice or salt. I have made chocolate, chocolate raspberry, vanilla with cherries and chocolate chunk, and now the strawberry shortcake. I have made most of them with splenda, except the chocolate. And, most of them I made for my cousin who just had jaw surgery, I haven't really eaten any myself yet. My husband tasted the strawberry shortcake ice cream before he left for work and swears it's better than sex. He, and my cousins, also swore the chocolate was the best chocolate ice cream they ever ate. Let me know if you want any of the other recipes.

Strawberry Shortcake Ice Cream

16 oz fresh or frozen (no sugar added) strawberries
1 cup plus 1/2 cup splenda, divided
1 cup heavy whipping cream
1 cup 2% milk
2 eggs
1 cup shortcake, cubed, then freeze

In a blender put the strawberries and 1/2 cup of the splenda. Blend to puree.In a bowl whisk 2 eggs, add splenda, cream, milk, and strawberries. My machine requires you turn it on and pour the ingredients in the spout then let the ice cream maker do it's thing for half an hour. After half an hour add the shortcake cubes. Stir the cubes in well then freeze the entire mixture to harden (ice cream comes out of the machine in a soft serve type consistency).

Finally

I think I may have finally found the doctor for me. I searched for someone who was top of their class and young. Young was important. In my experience older doctors, even those in their mid forties, and up are not the go getters younger doctors are, nor are they necessarily up on current medical. My last doctor was a family practitioner but also a, oh heck what is that word??? a doctor who specializes in senior citizens. The term will come to me eventually. In the meantime, I really like this doctor, she is determined to figure this mess that is my health out. And, she's not assuming everything is linked. Like my shoulder has been giving me problems for wow about 10 years, since before I was diagnosed with fibro.  But, every doctor, and me too, has always assumed the shoulder was part of the fibro.
In the next month she has me seeing a orthopedic doctor, a neurologist, a rheumatologist, a nutritionist, and a psychiatrist. Plus, a physical, and a mammogram. She wants me to have some test also, but I have to see if it will be covered for my insurance. It is the test for the genetic marker of breast cancer.
She did mention lupus, which this is not the first time I've heard a doctor say that word. I'm not losing any sleep over it. I had a few years ago and it was negative. Although, I understand from a few friends who have lupus it is not uncommon to have a negative test and still have lupus. I will have to let her know how sick I get whenever I spend any time in the sun. I rarely do so I hadn't realized how sick it made me. We went to a water park a few years ago, when I worked for Disney we had a work event one evening, it was such a blast! (not that I can do anything other than the lazy river or the shallow end of the wave pool) Anyway, I was in so much pain and fatigued afterwards. Then in the past few weeks I have been to the beach and a pool party. Both times I again got incredibly ill. I googled pain, fatigue, and sun exposure and up popped lupus. Plus I get a rash on my head, and lupus can cause swelling and pain in your joints, the first sign is in the knuckles. I am still not worrying about it. I probably sound like a hypochondriac, it's just a possible answer to this mess, I mean the RA tests are negative, 2 neurologists have said neuropathy, 2 have said not. There has got to be some definitive answers some where!

email: Post Stroke Nerve Damage

I received a lovely email today from a man who I will only say his first name is Ray. I have received several emails previously, from other people, and today I wondered why I'm not sharing them with you. Ray writes:


"Hi: 

I will be 60 next month and have had type 1 diabetes since 1 was 10. Up until 2 months ago my life had been fairly routine..well I had a heart attack in 1998 but fine since then. That morning was very routine.. but I passed out with no warning while turning on the TV and landed in a chair thankfully. Approximately 3 hours later I was conscious enough to know that I needed to call 911.. but I could not walk as my legs felt paralyzed. I crawled to the phone, crawled to the fridge to get some OJ while talking to the 911 operator and then had to crawl down 4 stairs and through the front hall to open the door for the paramedics.

They treated me for low blood sugar and by the time my blood sugar was up I was able to stand, although my calves felt like hard bricks.  I should have gone to the hospital then, but I declined, assuming it was a blood sugar related incident.

When I went to my doctor the following week he said it could have been a mini-stroke ( a TIA ).  I got a CT scan done..it showed nothing. I am still waiting for the MRI results to confirm or deny the stroke aspect.

In the meantime I have been enduring an off balance sensation when standing and I do not walk the same as I used to. A tingling,burning,and well some pain too, mainly in my back but also in my left leg and foot. I have gotten some physio and it seems to have helped somewhat. I am self employed and play trumpet in 3 bands ( well I did until this ). My back aches terribly if I try to play.

Some days are not as bad as others but I do feel frustrated and a bit inadequate as my wife looks after most things around the house now ( I can still mow the lawn on a good day but just slowly ). I still drive, work etc. but things are not the same. I feel as long as each day is marginally better that things will be okay."

I really admire Ray's positive attitude. To me, the tingling and burning sounds like neuropathy, but of course I am no expert. I have read though that 8% of stroke victims have nerve pain after a stroke, so post stroke neuropathy is not uncommon. 

I understand, and I'm sure if you are reading this and suffer from a debilitating illness you do also, Ray's frustration and feeling inadequate. Being unable to manage simple tasks you used to be able to do can cause severe depression and anxiety. For me, I have quite a hard time with anything that requires my hands, and let's face it EVERYTHING requires your hands, but especially fine manipulation. Things like removing the battery case from a cell phone, removing saran wrap from the roll, jewelry clasps, opening soda bottles are simply impossible. And, I drop a heck of a lot of glasses! 

As always, feel free to drop me a line at alonelydragonfly@aol.com & I will try to find some more of these emails and post them so you know you aren't alone.