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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

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Continuing with the LCHF Lifestyle

Day by Day with a Movement Disorder Posted on February 2, 2014 by DBMay 8, 2016 7

I’ve spent the last month gradually changing over to eating on the Low Carb High Fat (LCHF) lifestyle. I say lifestyle, not only because it’s such a drastic change from what we’ve all been told was best for us, but because it’s not really a weight loss diet. And that’s what everyone thinks if you say you’re on a diet.

Anyway, I was well on my way to eating this way already, since I’m diabetic. So it’s probably not been as hard for me as it would most people. But it’s still been quite an adjustment to stop eating ALL grains, beans, and below ground vegetables.

I have enjoyed eating all the eggs! And they have naturally the right percentage of fat, carb, and protein. Other diets, such as Atkins, replace the carbs with more protein. But this diet replaces all the carbs with fat calories. And I can state categorically – I’m not hungry!!

There are lots of possibilities as far as what I could be eating, but here’s a general idea of what a day is like for me now. Breakfast is 1/4 cup of nut pieces, a tablespoon of flax meal, and a cup of almond or coconut milk. I eat it as if it were cereal, and that keeps me going just fine until lunch.

Lunch at home is what it’s always been (since I was diagnosed with Type II Diabetes). Hubby cooks a stir fry of vegetables in olive oil, often with ham. He still eats whole grain bread with it, but I don’t.

Afternoon snack is usually half of an avocado or something called a chocolate Fat Bomb. It’s a homemade chocolate candy that is basically unsweetened cocoa, butter, and coconut oil.

I’m keeping track of my food intake on http://www.myfitnesspal.com, so I can tell how many calories I have left for the day. I do hope to lose some belly fat on this diet, so I’ve set a calorie limit for myself. And I need to learn how to keep the protein and carb intake low and the fat count high, so tracking my nutrition is helpful. Once I see where I stand nutrition wise, I decide how many eggs I can have for supper and whether I can add cheese, spinach, and/or mushrooms.

It’s really weird. I’ve not craved any sweets I was used to eating, like ice cream on Sundays. I do miss the great sandwiches chock full of veggies that hubby used to fix me for dinner, but I can still have them as a salad.

I found an easy to fix coconut flour and egg bread substitute that cooks in the microwave. I make that when I’m craving bread.

Eating out has been the hardest to adjust to, and we eat out several times a week on average. But again, I was already used to finding suitable foods in restaurants, because of the diabetic restrictions, and that helped. So far I’ve been able to stick to the ketogenic diet pretty well.

And the Ketostix test strips I use show that I am in Ketosis. That’s the secret to this lifestyle. The goal is to change the cells over to using ketones for energy, instead of carbs. Mitochondria use ketones more efficiently than they do glucose, which is supposed to increase my energy level. It has definitely done that. There’s no difference in pain level yet, and as long as I stay on the pain meds I may not see an improvement in the brain fog, but I’m still optimistic about that improving in the future.

As I see my energy level increase it gives me reason to continue with this lifestyle, with the hope that the brain fog will lift, and the improved mitochondrial activity will lessen my muscle pain. Only time and patience will tell.

Posted in Nutrition, Type II Diabetes | Tagged diabetes, fat bomb, high fat, intake diary, Ketogenic, ketones, ketosis, LCHF, low carbohydrates, mitochondria, nutrition | 7 Replies

My A1c was 5.5!!!

Day by Day with a Movement Disorder Posted on April 28, 2010 by DBMay 19, 2016 2

Whoo Hoo!! I’m CELEBRATING!! My A1c reading was 5.5 yesterday!! Anything below 7 is considered to be extremely good, so I really did well!! This number is in line with what a person who does NOT have diabetes would get.

The A1c reading is a blood test, usually done at the doctor’s office, that gives a good indication of the average blood glucose level for about the last 3 months.

According to Wikipedia:

In the normal 120-day life span of the red blood cell, glucose molecules react with hemoglobin, forming glycated hemoglobin. In individuals with poorly controlled diabetes, the quantities of these glycated hemoglobins are much higher than in healthy people.

Once a hemoglobin molecule is glycated, it remains that way. A buildup of glycated hemoglobin within the red cell therefore reflects the average level of glucose to which the cell has been exposed during its life cycle.

Basically, if I understand that, extra glucose in the blood permanently changes our red blood cells. Since our blood cells live for about 120 days, measuring the percentage of “sugared up” red blood cells is a good way to see what my glucose level has been for the last few months.

I was not as pleased with my weight, though, as I’ve not lost any more weight in some time. I’m having a hard time getting myself in the exercise habit, and I know that’s the problem. I’m controlling what I eat and how much I eat, with occasional splurges, but I’m not burning enough calories. Plus, I need to be exercising more just for good general health. I’ve already seen considerable improvement with my step climbing and walking up and down steep driveways on our Date Days, so I should be motivated to work out even more. This is what I’m going to have to work on mentally, as I have never been a very physically active person.

So, I celebrate the great blood glucose results for the last few months and continue to exhort myself to improve my activity level.

Posted in Type II Diabetes | Tagged A1C Test, apathy, blood glucose, diabetes, diet, exercise, Quality of Life | 2 Replies

Insulin Resistance Still a Problem for Me

Day by Day with a Movement Disorder Posted on April 5, 2010 by DBMay 19, 2016 2

I’m very thankful to report that I’m still doing quite well. I haven’t weighed myself again yet, because it’s been too soon for me to have lost another pound. I have my calorie intake set to lose a pound about every 10 days, and I’ve been surprisingly close to that pace for almost a year now. I’m graphing my weight loss on Fitday.com, as well as keeping up with my food intake each day. I really believe having the discipline to write down everything I eat each day has a whole lot to do with the fact that I have lost so much weight. My original goal that I set on April 1, 2009, was to lose 50 pounds by April 15, 2010, but I’m going to be a few pounds short of that at the pace I’m going. But hey, I’m not complaining. I’m very pleased with my results.

I did have a strange situation develop on our Date Day Friday. We ate out at a place that serves huge portions of home cooked vegetables and has great cornbread. It’s not unusual for me to splurge some when we eat out, so I gave part of my vegetables to my hubby, ate a whole cornbread muffin, and had maybe a quarter cup of his peach cobbler. I think that’s the first time I’ve eaten a whole muffin, though, and evidently I paid for it later. About 3 hours later I started getting that deep pit hungry feeling with shakiness, and sure enough, when I checked my sugar – it was low. I ate some prunes and almonds, which is my usual afternoon snack, but the feeling did not go away. So I ate some grapes, too, and began to feel a little better.

This is a rather odd chain of events that happens with Insulin Resistance, which is the cause of Type II Diabetes. I ate too many carbohydrates, so my body released extra insulin to compensate. But, because my cells are insulin resistant, the cells did not let the insulin+glucose molecules into them. So…. I produced even more insulin, because the cells were still sending the signal that they needed it. This continued for several hours, but eventually the cells were flooded with all this insulin, and it pulled my blood glucose level downward. This roller coaster ride is hard on the cells, and to be avoided. That’s why Type II Diabetes should not be ignored, as it causes cell damage if unchecked. So… I learned that even though I have my numbers in a good range almost all the time, with medication of course, I cannot splurge as much as I might like to. No more whole cornbread muffins for me. Sigh.

Posted in Type II Diabetes | Tagged blood glucose, diabetes, Insulin Resistance | 2 Replies

Diabetes Doc Says I’m Doing Just Fine

Day by Day with a Movement Disorder Posted on September 30, 2009 by DBMay 21, 2016  

Well, my doctor was not at all upset by my numbers yesterday. He says as long as my A1C is as low as it is there’s nothing to be concerned about. So hubby and I are just going to have to put up with the sporadic high numbers.

A1C is a blood test that takes just a few minutes to get the results on. Any time my blood sugar goes too high some of my red blood cells are altered by the extra glucose in the blood stream. This change is not reversible. So, until those blood cells die in a couple of months or so, these changed blood cells are floating around in my veins and arteries. The A1C test measures the percentage of blood that has this glucose marker on it. Mine was 5.5 the first time I had it taken, 5.6 the second, and now 5.7 this third time. Those numbers are very good. Anything below 7 is good for a Diabetic, so I have a long way to go before he’s going to worry about me.

I did get my flu shot while I was there. That’s the regular flu shot. I asked the nurse when they expected to get the Swine Flu vaccine in, and she said they’re not going to get it. I’m glad. This batch was just hurried up too much for me to feel comfortable taking it. I would have, though, if he had recommended it, since diabetes is one of the factors that makes a person susceptible. Older people are not supposed to be prone to catch the Swine Flu, since we were exposed to a similar flu some years ago.

I’ve only had the flu once in my life, and I sure don’t want it again. So, I’m glad our church has put antiseptic foam pump bottles all over the place and is encouraging everyone to use them.

I don’t see my doctor again for 3 months, and maybe this time I can actually stop stressing over my numbers. I’m going to try, that’s for sure. The funny thing is when I took my glucose level 2 hours after eating lunch yesterday I got the highest reading I’ve ever gotten. I did have a small piece of carrot cake without the icing, but everything else I ate should have been OK. Of course “should have been” and “really was OK” may have been entirely different.

I did all my exercises and stretching today. They told me to try to stretch out my left leg, which has been hurting for several months now. I thought at first it was arthritis in my knee that was flaring up from exercising. But as it got worse I realized the pain is on the back side of the knee, not the front. The PT felt around and said it was all very tight, and gave me a stretching exercise to try to loosen it up. That’s the Myoclonus acting up for sure, as my left leg does a lot more jerking than the right one does.

I’ve been sitting with a hot pad under my knee this afternoon, trying to calm the muscle down a bit. Since it hurts so much, hubby and I have decided I should exercise every other day for awhile and see how that does.

So, I’m to stop fretting over my numbers, but keep testing as I have been. That’s a tall order for me, but I will do my best to let go of the anxiety I feel when the number is higher than my target number. And as I get back on a regular exercise routine that should help to lower my numbers, too.

It’s all about keeping a positive attitude.

Posted in Type II Diabetes | Tagged A1C Test, blood glucose, depression, exercise, Physical Therapy, Quality of Life | Leave a reply

Blood Glucose Test Numbers are Still Jumping All Over the Place

Day by Day with a Movement Disorder Posted on September 23, 2009 by DBMay 21, 2016  

The title says it all. I am not getting consistent numbers on my blood glucose test numbers at all. Many nights it comes back in range, only to have the next morning be high. Often I can’t think of a thing I’ve eaten that would make the numbers go too high, but they do anyway. The most glaring example lately was while we were traveling, and I had a grilled pork chop and 2 scrambled eggs. That’s all. No toast or grits or any carb at all, and had one of the highest readings I’ve had so far.

So, I’ve made an appointment with my Diabetes doctor for next week. I wasn’t scheduled to see him until November, and I just couldn’t wait that long.

I did have my last Physical Therapy session yesterday. I’ve got a pretty good exercise routine now, if I can just make myself do it. I’ve been so down about the testing numbers that I’ve not been exercising as much as I should. I’ll have to do better, for sure.

I had a strange morning this morning … up to my old ways … been up since 3:30AM. Don’t know what happened, but I woke up wide awake and couldn’t get back to sleep.

That’s all I have for today … just discouraged right now.

Posted in Type II Diabetes | Tagged blood glucose, depression, exercise, Physical Therapy | Leave a reply

Grrrrrr Those Blood Glucose Numbers Are Frustrating!!

Day by Day with a Movement Disorder Posted on September 3, 2009 by DBMay 21, 2016 2

Try as I might, I don’t seem to be able to consistently keep my blood glucose numbers where they’re supposed to be. Oh, there are always times when I know exactly what I splurged on that shot it up, and I can accept that as a rare occurrence. It’s when I think I’ve eaten a really good diabetic meal and still have a high reading that is so frustrating.

Hubby thought maybe my testing equipment was just registering high, after we read an article stating that home testing equipment can give results as much as 20% in error. So, just to see what would happen I double tested for several days last week, using the same blood drop with two different testing kits. Sometimes the second one would be lower, and sometimes it would be higher. But both kits consistently showed me too high when it went over the limit my doctor set for me. So I can’t blame it on the 20% inaccuracy findings.

I seem to be particularly susceptible to a glucose rise if I eat most whole wheat breads, something I thought I could have in moderation. So it’s a small piece of sour dough bread with lunch and occasionally a few whole wheat Melba toast pieces with dinner. And I can only manage a very small amount of fruit, which seems to work better if I eat it first. I guess it gets mixed in with the rest of the meal that way and doesn’t have a chance to make a big spike of sugar. So, in effect, I eat my dessert first now.

So I continue to learn what my body will tolerate and what it will not, and we both read everything we can get our hands on that might help me beat this disease as quickly and completely as possible.

Posted in Type II Diabetes | Tagged blood glucose, diabetes, nutrition, Quality of Life | 2 Replies

On Higher Glucophage Dose for Awhile Now

Day by Day with a Movement Disorder Posted on July 18, 2009 by DBMay 21, 2016 4

I’ve been on the double dose of Metformin (Glucophage) now for about 2 weeks, and it has definitely helped with the fasting blood glucose levels I test for first thing in the morning. I’m not doing so well, however, with the after meals tests for lunch and supper. I’ve even had some high readings when I’ve eaten the same thing I’ve had other lunches with good test results. It’s very discouraging, and I’ve begun to have bouts of depression over it. Hubby is extremely supportive, but it upsets him so much when I express the feelings of depression that I try to keep such comments to myself as much as I can, or, like here, vent on this blog. Right now it feels as if I’m never going to be able to eat a biscuit or have even a small helping of Italian food ever again, let alone a pizza! Desserts are off limits, too, unless I make them myself with artificial sweetener … and I don’t bake!!! I basically don’t cook, really, as hubby enjoys fixing lunch far more than I ever did. And I usually have something microwaved or canned soup for supper.

I get the most discouraged when we eat out. It’s awfully hard for me to find anything to eat that isn’t going to send my blood glucose too high, or get me off my diet, or set off my GERD. We ate at Waffle House the other night, and I just knew I was going to do OK, because I ordered a ham and vegetable filled omelet. I didn’t eat the grits, but I did eat the toast, and that was a mistake. Not only did I have a high reading afterward, but the omelet sat heavy on my stomach all the next day. I was not feeling well at all! I suspect it was because of all the butter they use in cooking their omelets, plus it had lots of cheese in it, which I’m not supposed to eat. Next time I’ll have to get one with minimum cheese and see how I do. Between watching my carbs and my calorie intake, and taking into account my lactose intolerance and my GERD … well, let’s just say that there’s not much left I can eat! LOL!

My knee is still bothering me, and that’s limiting my desire to exercise somewhat, plus it’s harder to make myself do it when I’m down in the dumps. I am doing the sets at least once a day on most days, and I go for Physical Therapy next week. I’m still losing a little weight each week, about a half pound a week. I broke 160 this week, which I’m very proud of. It will be several more days before I can call it 159, though, so I look forward to that milestone.

My continued weight loss has been good for counterbalancing my discouraged feelings about my diet. I’ll just have to keep on being proud of the weight loss, and try not to be so upset about the blood glucose readings. I think I can…I think I can…

Posted in Type II Diabetes | Tagged blood glucose, depression, diet, exercise, GERD, Lactose Intolerance, stomach, weight loss | 4 Replies

Doc Says I’m Doing Great … but ………

Day by Day with a Movement Disorder Posted on July 5, 2009 by DBMay 21, 2016 9

I couldn’t stand it any more and made an appointment to see my Diabetes doctor earlier than scheduled. I’ve been so frustrated by so many test results that were more than he had told me to aim for that I felt like something surely could be done to improve things.

So, we went to the doctor Thursday, and he bragged on my 1200 calorie diet and thought I was “doing great” with my glucose numbers. (THAT certainly surprised us both!) But … in the very next breath he DOUBLED my dose of Glucophage! He said I could cut back on the blood testing to 3 times a day, too. Since the test strips are so expensive this is a big help. Medicare pays for 50 strips a month, and the rest has to be paid out of pocket, since my insurance doesn’t cover the test strips.

So far so good on all the testing I’ve done since doubling the dose of medicine, so I’m feeling optimistic that I will lose the weight and eventually leave this diabetes diagnosis behind. Right now I’ve lost right at 20 pounds!! Considering how ravenously hungry I was all the time before being diagnosed, when my glucose was out of control, this is great news!!!

Posted in Type II Diabetes | Tagged blood glucose, diabetes, diagnosis, diet, FitDay, Glucophage, Metformin, weight loss | 9 Replies

Blood Sugar Aggravation Grrrrrrrrrrrrrrr!

Day by Day with a Movement Disorder Posted on June 30, 2009 by DBMay 21, 2016 2

Constant aggravation is how I’m feeling these days. There have been way too many days this month when my blood glucose level was higher than my doctor wants it to be, and with only a few obvious exceptions, I have absolutely no idea why.

I was scheduled for an appointment with him at the end of July, but I changed the appointment to this week.

I’m trying to read through the Atkins book for Diabetics, but it’s very detailed and is slow reading. It’s extremely well written, but I am taking it in in small increments. I’ve read quite a bit of what is presented from other sources, but this book seems to put all the puzzle pieces together quite well. I’m really not finding anything that I am currently doing incorrectly, so I don’t understand why I still keep getting so many high readings.

My biggest problem with reading something this involved is that I keep falling asleep. I plan to ask my Diabetic doctor if one of the meds he put me on causes daytime sleepiness, because that has been a real problem for me for some time now. I’m sleeping soundly all night long now, so it’s not because of insomnia that I’m falling asleep so easily. I feel like I need to apologize to our preacher, as I nod off during almost every sermon! LOL!!

I’ve been trying to “get a life”, too, and not spending as much time on the computer. There’s this book that I’m very interested in learning as much as possible from, plus we are both trying to learn how to sing Sacred Harp shape note music. And I’ve gone back to working Sudoku puzzles, as I felt my brain needed more stimulation. Now that the television is all digital we have lost some of the stations we used to watch, so we have more time for other endeavors.

I continue to lose weight slowly but surely, and it’s beginning to show up with clothes that are too loose. That’s encouraging. At the rate I’m going I could possibly lose 50 pounds by the end of this year! I’m doing pretty well at resisting sweets, enjoying fruit instead. And we continue to emphasize low carbohydrates in our diet where possible. Hubby’s losing weight, too!

So, I’ll continue to read my book, exercise daily, and watch what I eat. Hopefully he can tell me what else I need to do to stop all the high test readings and possibly make a prescription change that will help me stay awake.

Posted in Type II Diabetes | Tagged Atkins, brain fog, low carbohydrates, Sacred Harp, sleepiness, Sudoku, weight loss | 2 Replies

Glucose Test Results Have Been High

Day by Day with a Movement Disorder Posted on June 21, 2009 by DBMay 21, 2016  

I’ve been very discouraged lately by a large number of glucose test readings coming out higher than my doctor wants me to have. The frustration comes, because I really can’t pinpoint anything I’m doing or not doing that is causing the higher than normal readings. I even checked the meter to be sure it was working correctly. My fasting tests first thing in the morning, as well as tests during the day, have been high more often than not for quite a few days this month, and almost every time for the last week.

I put in a call to my doctor’s office, but their system doesn’t give me a chance to speak to his nurse. I get put straight to voice mail, and then she usually answers the next day. I really don’t like that system. I end up staying close to the phone for way too long, and then, like Friday, I’m not home when she calls back. She said she didn’t understand what I wanted, so my message was a complete waste of time. That’s certainly adding to my frustration. I was impressed with the doctor, but I’m sure not impressed with his office system.

I’ll call the office again tomorrow and try to get an appointment, since trying to deal with it over the phone is so difficult. He may say there’s nothing to be concerned about, or he may want to change my prescription to a higher dose or add a different med. All I can do is wait until tomorrow and hope I can actually speak to his nurse. Otherwise, I make an appointment for no telling when.

This is bad enough. I hate to even imagine how frustrated I would be if President Obama gets his way, and we have nationalized health care!! I’ve written my Representative and Congressman expressing my concerns about the quality of care available under a universal health care system. There was a story on the news not long ago about the VA not properly handling colonoscopy equipment and causing 28 people to contract HIV or hepatitis, or both!!! The VA is a perfect example of what national health care would be like, except it would be worse!!!

I’m continuing to log in everything I eat, and I’m managing to stay pretty close to 1200 calories a day, plus exercising, so the weight continues to ever so slowly drop off. I estimate I’m losing a little less than a pound a week, which hopefully means I will find it easier to keep it off. It might even mean a little less flabby skin when I finally lose the 50 pounds I have set as my goal for next summer. I’ve lost 17 so far, and I’m very pleased with that.

Posted in Type II Diabetes | Tagged appointments, blood glucose, national health care, weight loss | Leave a reply

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