Getting to Know Me, All Over Again, After Hepatitis C Treatment

While distractions might have gotten me through 2013, they also pleasantly postponed me from diving into the new personal health management work I need to tackle.

You see, I reached a new low point with my health last year.  Hepatitis C treatment in 2012 really took a toll, in expected and unexpected ways.  It's been over 16 months since it ended and I finally feel like I have a handle all the challenges treatment presented. 

The anemia-induced exacerbation of my dysautonomia symptoms resolved and my extreme sensitivity to the sun disappeared in about 3 months.  The extreme fatigue and overall weakness got gradually better with each month that passed too.  Within a year's time, I was pretty much back to my "usual" level of chronic illness related fatigue.  Oh, and a sore that developed during treatment finally fully healed at the 15 month post-treatment mark. 

Now I just need to conquer the small intestinal bacterial overgrowth (SIBO) in my gut to get back to my pre-treatment self.  Oh, and get a handle on new problem: high cholesterol.  That was a surprise.  Seems the only good thing about having chronic Hep C infection is that the virus keeps your cholesterol low because it uses the fats in your body during its viral replication process.

As for my diabetes, there's been no dramatic improvement in my insulin resistance or glucose control since beating the virus.  And in regards to my fibromyalgia and chronic pain, there's been no improvement there either.  I am disappointed on both accounts.  However, I did some more research when I didn't get the outcomes I wanted and I remain convinced that my 24 year long chronic Hep C infection played a role in the appearance of these two conditions.

I read an article by Dr. Mark Borigini, a rheumatologist at the National Institutes of Health, and learned that Hep C can flip a (metaphorical) switch and trigger fibromyalgia symptoms.  However, it appears that when the virus leaves, it doesn't turn the switch off on its way out the door.

The same is true for type 2 diabetes.  Science Daily reported back in 2010 that Hep C flips yet another (metaphorical) switch and causes people with a genetic predisposition for type 2 diabetes to develop this condition decades before their family members do.  My paternal grandfather developed type 2 diabetes is his 70's; I developed it at age 33.

Darn inconsiderate Hep C virus, causing damage and not cleaning up after itself on its way out of my body!

Want some good news? A repeat viral load test in October 2013 showed I was still undetectable, which IS good for me in the long run.  According to a new study from Taiwan, having Hep C increases the changes of complications from type 2 diabetes.  Successful treatment of Hep C infection in persons with type 2 diabetes reduced the risk of kidney disease, stroke and cardiovascular disease by roughly 50%. 

So successful treatment helped me dodge some potential future health problems.  I am grateful for that.  And I am sure as time progresses, science will catch up and learn more about what Hep C really does to a person's body, and I will be grateful for avoiding those long-term consequences too. 

In the meantime, I need to get focused on the present and finish my recovery -- from both treatment and 24 years of having my body hijacked and turned into a viral replication factory.  It's been 16 months since treatment ended and the truth is this recovery process isn't over for me yet.  Much like when I completed my cancer treatment 25 years ago, I now need to learn to live in a body that isn't quite the same as it was 22 months...and that is going to take some time. 

2014 is the year I will really start getting to know what my body is like without Hepatitis C.

Today is World Diabetes Day 2012 #NHBPM

One of my many chronic illnesses is diabetes, so I want to take some time today to acknowledge and celebrate World Diabetes Day 2012.

How I Learned I Had Diabetes

I was diagnosed with type 2 diabetes in January 1999.  To be honest, I don't remember if I was having any of the sign and symptoms of diabetes back then like:

• Frequent urination
• Excessive thirst
• Increased hunger
• Weight gain or weight loss
• Tiredness
• Lack of interest and concentration
• Vomiting and stomach pain (often mistaken as the flu)
• A tingling sensation or numbness in the hands or feet
• Other signs include blurred vision, frequent infections and slow-healing wounds

For people who are developing type 2 diabetes, these signs and symptoms may be mild or absent.

My diagnosis was confirmed with blood tests that my primary care doctor ran, which included an A1c test.

Now I do have a family history of type 2 diabetes on my father's side of the family.  My Grandpa developed diabetes in his retirement years and a cousin developed it as a young adult.  But that doesn't really explain how I got it.  Research is showing that having chronic Hepatitis C (Hep C) infection can trigger the development of type 2 diabetes, especially in people who have a family history of the disease like I do.  According to Science Daily:

...Hepatitis C apparently brings on diabetes at 35 or 40, instead of 65 or 70.

When I was diagnosed I was 34.

The Hepatitis C/Diabetes Connection

Type 2 diabetes occurs when the body cannot effectively use the insulin it produces. Insulin is a hormone made by the pancreas that shuttles glucose from the blood stream into your cells where it is used it for energy.  When this process doesn't work correctly it is called insulin resistance.

Hep C creates insulin resistance.  It does this by turning off an enzyme called AMP-kinase (AMP-K,) which is responsible for maintaining the energy balance in our cells.  When it is turned on, sugar is transported into our cells and energy production in the mitochondria occurs.  When AMP-K is turned off, cells produce fat, which is what the Hep C virus needs to cover the newly replicated viruses it makes inside your cells.  

(I also wonder if this is the reason why so many people living with chronic Hep C infection have such huge problems with fatigue...)

Primary Care versus Endocrinologist

I know that many people who have diabetes never see an endocrinologist or diabetes educator.  Their primary care doctor manages their care and maybe they get sent to a class or two on nutrition or diabetes self management.

Here are some of the benefits I see in having an endocrinologist working with you on your diabetic control:

• every endocrinologist's office has a certified diabetes educator
• most also have a nutritionist 
• they provide ongoing diabetes education and support whenever you need it
• they can give you free samples of diabetes medications to try 
• they can give you a free glucometer 
• they know all the latest diabetes medications and can switch you to something different quite easily

Managing Diabetes is a Big Job

I know that if I hadn't been followed by an endocrinologist since 2003, I would have been in much worse shape!  The biggest problem I've had managing my diabetes has been related to Hep C.  I noticed that when my Hep C viral load went up, my diabetes would start going out of control.  That meant switching my diabetes medications several times over the last 9 years to get things back under control.

Before I started Hep C treatment we discussed what might happen, since treatment can make your diabetes either worse or better.  My endocrinologist sent me home with a sample of long-acting insulin so I could be prepared to start using it if necessary.

And sure enough, I ran into problems with high blood sugars, into the 300 mg/dL range at one point.  Fortunately, the diabetes educator was there to help me learn how to use insulin.  We corresponded weekly via email or phone until we got my insulin doses just right, and it took several weeks to get there.  Plus she called in prescriptions for all the new things I needed: pen needles, lots of test strips, a glucagon kit and a second, short acting insulin.

Thank goodness for my endocrinologist and her team, because I know my primary care doctor just doesn't have that kind of time and flexibility to work with me when things get really wonky with my blood sugar.

Diabetes Education is Important

The theme of this year's World Diabetes Day observance is this: education is of the utmost importance in the prevention of diabetes complications.  

I know this first-hand.  I also know that the best sources for diabetes education are in an endocrinologist's office.

So please, speak up and ask for a referral to see one, even if it is just for a consultation.  Let the experts in diabetes give you the information you need to prevent diabetic complications, like eye damage, nerve damage, heart disease and amputations, so you can live a full and healthy life despite it.  Let them instruct your primary care doctor on what treatment course is right for you and be there to help if your blood sugar starts getting out of control.

I truly believe access to this kind of specialty health care should be a right for everyone who is diagnosed with diabetes.

As for me, we'll have to see if:

• I have cleared my Hep C infection (I'll know for sure in Febraury 2013)
• being Hep C negative has a positive effect on my diabetic control

Bits and Pieces: A Sunday Extra Edition

Extra Warmth by somadjinn

Things have been a bit crazy around here.  Thankfully I find myself enjoying a little pause in the action this weekend, so I thought I'd take the time to make up for some missed posts during the week and write a weekend update.

My Family

I got a phone call eight days ago from one of my Aunts back in Illinois. One of my eight cousins died on July 8th from what appears to be complications from type 2 diabetes. He was only 42.

As you know, I have type 2 diabetes too, so the news kind of hit me sideways. Granted, our situations are different, but still it gave me pause. Whenever someone in my family dies, like when my mother died of colon cancer or my dad died of Alzheimer's, I can't help but wonder, "Could that happen to me too?"

My Hands

Earlier this month, I followed through on a recommendation from my visit to the Mayo Clinic in Arizona and saw an orthopaedic hand surgeon here on Los Angeles.  He confirmed the finding that I have significant carpal tunnel symptoms in both hands and that surgery can be a fix for my condition.  This past Thursday I scheduled surgery for my right hand on Wednesday, August 31.

Now my challenge is to stay focused on how much this might help me pain, instead of getting sucked up into the anxiety a pending surgery creates.

My Sleep & My Diabetes

Have I mentioned that I have been using a very low dose of Seroquel, prescribe by a sleep doctor, to help me get better quality deep sleep for a while now?  Unfortunately, this medication is known to cause problems with blood sugar.

Due to my ever increasing Hepatitis C viral load, I've been having more and more problems managing my blood sugar. It's gotten to the point where I contacted my endocrinologist asking if I needed to start a second medication in addition to Victoza.  This week I decided to take a drug holiday. Lo and behold, my blood sugar has dropped from between 180 and 200 to 140 and 180 fasting in the morning. Seems stopping this medication might be the right direction to move in.

I am worried that in the long run this is going to negatively impact my sleep, but I do have a new medication to try from my neurologist that might be able to help.

My Blog

I decided a few months back I wanted a blog make-over. I also decided it was time to hire a real blog designer to help me with this task. My project got off to a really rough start, but I made some changes and hired a new designer.

I am now working with Katie Lane of DreamUp Studios who is making the process a breeze and I am so excited about my upcoming blog redesign. I've loaded a couple of things onto my blog today to give you a sneak peek of things to come.

If you are thinking of hiring someone to redesign your blog or website, create a logo or draw a custom illustration, I strongly encourage you to head over to DreamUp Studios and take a look at the awesome things they can do for you too.

What Is Working and What Is Not

Today I wanted to talk about some emerging challenges with my self-care routine and the steps I am taking to address these new issues.

Sleep Apnea

What's not working: I have been using a nasal pillow mask for several years now. During that time, I've been dealing with a lot of nasal discomfort, with the most troublesome symptom being increased nasal stuffiness. My primary care doctor recommended I use a prescription nasal steroid spray to combat this problem. Unfortunately, my endocrinologist thinks the nasal steroid is mimicking the symptoms of a hormonal problem and has asked me to stop using spray.

What is working: I decided it was time to go back to the drawing board and check out different CPAP mask configurations to see if switching to a different type of mask could solve the problems I was having a nasal stuffiness. After doing some research I decided to give the Sleepweaver soft fabric nasal CPAP mask a try. The new mask allows the air from my CPAP machine to surround my nose rather than be blown up inside of it. This seems to be making a difference, as the problems I've been having with nasal stuffiness seem to be resolving.

The bottom line: If you are a CPAP user like me, it pays to keep on top of new developments in CPAP technology. Every year, I find new and innovative products that are helping me minimize or eliminate many of the small annoyances that come with being a regular CPAP user.

Dysautonomia

What's not working: I've been trying to implement the recommendation from my doctor at the Mayo Clinic to include more electrolyte beverages into my daily routine. Electrolytes help me better maintain my fluid balance, which is a problem when you live with postural orthostatic tachycardia syndrome (POTS) like me. Unfortunately, most electrolyte drinks contain sugar. Since I'm diabetic, I generally avoid sugary drinks because they present a signification challenge to my blood sugar management.

What is working: I've been searching for several months now, looking for an electrolyte drink that is sugar-free. I recently discovered Ultima Replenisher, a balanced electrolyte drink that is sugar-free and recommended by the Dana-Farber Cancer Institute for their patients. I purchased the lemonade flavor a few weeks ago and really liked the taste. I'll be ordering the orange flavor from Amazon.com in the next week to give that a try.

The bottom line: What can I say? Persistence often pays off.

Type 2 Diabetes

What's not working: Unfortunately for me, my blood sugar levels appear to be on the rise once again. I can honestly say I have not made any significant changes to my diabetes self-care routine, so my best guess is that the rise in my blood sugar has something to do with my Hepatitis C viral load. I've noticed in the past that when my viral load increases I have more difficulty controlling my diabetes.

I just had blood drawn a week ago. I will be getting those test results soon and I anticipate that they will confirm my suspicion.

What is working: In the meantime, I've needed to get more diligent with my diabetes self-care. I am double checking to make sure that my meals are balanced between carbohydrates, protein and fat. I am also making sure I include more high fiber carbohydrate choices, like whole grain bread and pasta, beans, whole fruit and starchy vegetables, and fewer simple carbohydrates choices, like products made with refined white flour and sugar.

I've also discussed my concerns with my endocrinologist and she has suggested increasing my dosage of Victoza.

The bottom line: This isn't the first time this has happened. And each time it happens, it gets me thinking that it might be time to start thinking about treating my Hepatitis C. So when I see my hepatologist for a follow-up appointment at the end of June I'll be talking with him about hepatitis C treatments once again.

As you can see from this discussion, managing my chronic illnesses is an ongoing process with an ever-changing target that requires me to be resourceful, flexible, persistent and engaged. It's a lot of work, but it's a very necessary part of my life. After all, no one is in a better position to take care of me than I am. Too bad it's not a job that doesn't pay better.

The bottom line is I know I'm doing a good job when I continue to be able to live my best life despite all my health challenges.

Today is World Diabetes Day 2010

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Do you have diabetes?

It's a question YOU need to know the answer to so you can avoid short and long-term health complications. The incidence of diabetes is on the rise due to many factors, including diets full of high sugar foods, lack of exercise and obesity.

YOU may be at risk, you may even be having symptoms of the disease, and you may not know it.

The theme for World Diabetes Day 2010 is "Let's take control of diabetes." Diabetes is a manageable condition, controlled through diet, exercise and medications. Persons with diabetes can live long, healthy lives, but only if they know they have it and are educated by their health professionals on how to monitor and treat it.

The next time you are at your doctor's office, talk to them about diabetes. Ask what you can do to prevent getting diabetes. Ask if you are at risk. Ask to be tested.

Related articles

• The American Diabetes Association Encourages People to Take Control of Their Health on World Diabetes Day (marketwire.com)
• 6 Common Myths and Misconceptions About Diabetes (health.usnews.com)
• World Diabetes Day, Birthday Of Sir Frederick Banting Co-Discoverer Of Insulin, November 14th (medicalnewstoday.com)

Death by Donut & Other Side Effects Your Doctor Forgot to Mention

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If you have chronic illness like I do, chances are pretty good that you take several medications.

When faced with new prescription, I always mention my current medications to make sure there are no drug interactions. I ask my doctor about the pros and cons, which usually includes a discussion of side effects. I go through the same drill with my pharmacist when I take the prescription to be filled and make sure I read the literature that comes with a new medication to triple check.

So when I went to see my diabetes doctor on Tuesday, I mentioned to her that I am more episodes of nausea and vomiting since I start Victoza, the once-a-day GLP-1 agonist that I wrote about in my post Ode to My Cereal Bowl. I told her the latest episode was on Sunday morning, two days before my appointment.

"So what did you eat Saturday night?" she asked.

"I had a turkey burger and fries," hoping that I wasn't going to get busted.

"That's probably it," she said. "It was probably the fat in your meal that caused the problem. GLP agonists can cause problems when you eat too much fat in a meal. Next time, when you have the occasional burger and fries, just take less of the Victoza and you should be fine."

Seriously? I am causing this to myself based on my food choices and lack of understanding on how a GLP agonist works?

Well, apparently being told this didn't really sink in, because I ate a Kripsy Kreme donut yesterday.

In my (feeble) defense, it was the last one in the box and I rarely eat donuts. But my hubby wanted some a few days ago and I didn't want to feel left out, so I got a couple too. The cake ones didn't seem to bother me, but this fried one was a different story. The good news is that this 'experiment' proved the point that I cannot eat something so high in fat when I take a full dose of Victoza. The bad news is that I felt lousy all day long.

All day long I kept asking myself, 'I wonder if anyone has actually died right after eating a Krispy Kreme donut?'

Then I realized that on top of the turkey burger and fries I had Saturday night, I came home and had one of those $@&*! donuts for dessert.

Yeah, no more fried donuts for me.


PS I did a quick Google search and only found one mention of problems eating high fat meals when taking Victoza. It was a comment left by someone over at the diabetes website tudiabetes.org

A Diabetes Meme

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I know I write more about my chronic pain, chronic fatigue and fibromyalgia. While they have taken the spotlight over the past six years, they aren't my first chronic illnesses. No, my first 'official' chronic illness was type 2 diabetes, diagnosed in January 1999.

So in the interest of giving some equal time to all my chronic illnesses here on my blog, I am completing this diabetes meme, just like Amy of Diabetes Mine and Kerri of Six Until Me (two great diabetes blogs, by the way.)

What type of diabetes do you have?

I have type 2 diabetes.

In this type of diabetes, the pancreas makes insulin, but the body is having problems using insulin to shuttle sugar from the blood into the muscles. In response, the pancreas makes more and more insulin trying to overcome this insulin resistance. At a certain point, the pancreas can not make enough extra insulin to compensate for the insulin resistance and blood sugar levels soar. It is at this point that the diagnosis of type 2 diabetes is given.

It is thought that my chronic Hepatitis C infection is the catalyst of my type 2 diabetes. Researchers in Australia have found that having Hepatitis C 1) increases insulin resistance in muscles and 2) causes those with the genetic predisposition to type 2 diabetes to develop the disease decades earlier than those without Hepatitis C.

When were you diagnosed?

I was diagnosed with type 2 diabetes in January 1999 ... almost 12 years ago.

What’s your current blood sugar?

My current blood sugar is 96. (Yeah!)

What kind of meter do you use?

I LOVE the Bayer Contour USB meter! I recently switched to this meter because it is compact and easy to use: no coding of the test strips, small blood sample size and it connects via the USB port on my computer so I can download and analyze my results.

How many times a day do you test your blood sugar?

I test about 3 times a day. I always test every morning when I get up. I test after one or two of my meals daily to check a postprandial reading. I occasionally test before I go to bed. I also test when I am not feeling quite right. When I start a new treatment or I am sick, I test more often to monitor my blood sugar more closely.

What’s a “high” number for you?

1) Any fasting blood sugar over 140 and 2) any blood sugar over 180 two hours after a meal is high for me.

What do you consider “low”?

While 70 is technically not low, I don't feel very good when my blood sugar gets this low. I think the lowest reading I ever had was a 60.

What’s your favorite low blood sugar treatment?

I like the orange-flavored Dex4 fasting acting glucose tablets. Sure, I could eat candy or drink a regular Coke, but these tablets work fast and are easy to carry in my purse. Since I only use them for low blood sugar, I don't have to worry about being out of them when I really need them because I used them as a snack.

Describe your dream endocrinologist.

My dream endocrinologist is my doctor, Dr. Anne Peters. What make her so great is that she listens to me and understands how complicated my health is. Since she is a top expert in diabetology, she knows all about the medications in the pipeline and won't hesitate to switch me over to something new if it will help me manage my diabetes better.

What’s your biggest diabetes achievement?

Getting my blood sugar under tight control, which I have learned is the combination of the right medication, smart and balanced eating and exercise. With my chronic pain and chronic fatigue, the exercise component of this equation has become much more difficult in the past several years and I have come to rely on medications more.

What’s your biggest diabetes-related fear?

Developing complications, like eye, kidney or nerve damage or having a heart attack or stroke.

Who’s on your support team?

My endocrinologist plus the diabetes educator and nutritionist in her office, my primary care doctor and my husband make up my diabetes support team.

Do you think there will be a cure in your lifetime?

I'm not sure there will be a "cure" for type 2 diabetes.

There is a genetic component to the diagnosis, but I don't see there being a gene-based treatment for it any time soon.

I think that better prevention efforts that focus on identifying people at risk and getting them to eat better and exercise more are the key to combating type 2 diabetes. It would greatly help if we could create global norms about healthy eating and make fast food = healthy food.

What is a “cure” to you?

No more death and disability because of type 2 diabetes.

The most annoying thing people say to you about your diabetes is…

People make assumptions about what I can and can't eat when I say I am diabetic. What I try to teach them is that I can eat just about anything, as long as I balance my meals between fats, proteins and carbohydrates. So yes, I can eat something with sugar in it.

What is the most common misconception about diabetes?

I think the biggest myth is that eating sugar causes diabetes.

If you could say one thing (or three) to your pancreas, what would it be?

I'm sorry you have to work so hard because my muscles are so insulin resistant. I appreciate all your efforts to help me get back into blood sugar balance. Please don't give out on me!

Related articles

• Diabetes Meme + Anything You'd Like to Know (diabetesmine.com)
• A Diabetes Meme. (sixuntilme.com)

Selena Writes: A Letter to the Healthy People In My Life

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Dear Healthy Person In My Life,

I live with chronic illnesses: fibromyalgia, myofascial pain, thoracic outlet syndrome, dysautonomia, chronic Hepatitis C infection and type 2 diabetes.

They are called chronic illnesses because currently there are no cures for them.

Without a cure, these chronic illnesses will be a part of all my days.

The only thing I can do is manage my chronic illnesses.

Managing my illnesses takes a team effort between my doctors, my supporters and myself.

The most important way I have found to manage my illnesses is through self-help techniques (like pacing, planning, resting, asking for help, setting limits and saying no.)

Managing chronic illnesses is like having a job, except I work 24 hours a day, 7 days a week without pay or benefits.

There is no vacation, no escape from chronic illnesses.

Having chronic illnesses means that my life has been forever changed.

For example, I can no longer remember what it feels like to have a day without chronic pain or chronic fatigue.

Having chronic illnesses doesn't mean that I am a bad person or did something horrible; they are not a punishment for past sins, weak character or lack of action on my part.

Having chronic illnesses doesn't mean I can't do anything, but it does mean that there are some things I can no longer do and changes the way I approach doing everything else.

Having chronic illnesses means that I will disappoint you with my lack of ability to be an average, normal, healthy person.

You may feel frustrated, angry or upset with me--know that I feel all those emotions and more when faced with my physical limitations.

Know that my goal is to live my best life despite chronic illnesses.

Know that I have not given up hope that maybe one day things will be better for me.

Until that day, managing my chronic conditions has to be my number one top priority.

The best ways you can be there for me and back my efforts to manage my chronic illnesses are:

• to love me
• to listen to me
• to believe me
• to support me
• to help me
• to respect my limitations
• and to be patient with me

.
Thank you for reading my letter.

Sincerely,

Selena


Related articles by Zemanta

• The Real Truth About Me (ohmyachesandpains.info)
• Chronic Illness: It Sucks ... And I Deal With It (ohmyachesandpains.info)
• Selena Writes: I Am Not My Chronic Illnesses (ohmyachesandpains.info)

Selena Writes: I Am Not My Chronic Illnesses

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I recently read an excellent blog post over at The Queen of Optimism entitled Want to empower? Learn what “People First” means.

When I got done reading this post I said to myself, 'Wow, I didn't know what "People First" meant!"  But upon further reflection, I recognized the I have been using this language for at least 18 years ... I just didn't know it was called "People First" language.

Want me to prove it to you?

In my post A Story in 140s: Persons Living with Fibromyalgia (PWFs) I used "People First" language.

Since this realization, I have been thinking about all the ways that I refer to myself in relation to all my chronic illnesses and all the "nicknames" people use to refer to themselves and others living with specific chronic illnesses. I wrote some of these labels and nicknames down:

You might call me a...	But if I am a person first, you'd say...
Cancer survivor	I am a person who had cancer.
Diabetic	I am a person who lives with diabetes.
HepCat	I am a person who lives with Hepatitis C.
Fibromite	I am a person who lives with fibromyalgia.
POTSy	I am a person who lives with dysautonomia.
Spoonie, ChronicBabe	I am a person who lives with chronic illness.

So do you see the difference?

The Queen said it best:

"Defining a person primarily by a disorder they have and using dated terminology that is condescending limits a persons’ other characteristics and does the opposite of empower. It puts people in a corner figuratively and some times literally. It implies we are not equal. It’s limiting language. Every person, with or without a disability, is a person first and foremost so call them a person with…”

That's right! I am not cancer, diabetes, Hepatitis C, fibromyalgia, dysautonomia or chronic illness. My illnesses are not me.

My illness experiences are just that, experiences. They are not what I think, what I feel and what I do. They are not who I am. I am Selena first, living a life with chronic illness second.

Love them? Hate them? Just don't care? What do you think about illness nicknames? Click the Add Your Comment button and speak you mind...

A Saving Grace for When Everything Goes Wrong

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They are not moments I like to think about, now that they are securely a part of my past. What am I talking about? The great big meltdown moments that have occurred in my life...

The First Time

The first major meltdown happened a month after I was diagnosed with leukemia. I was excited about my upcoming released from the hospital after a successful first course of chemotherapy that put my cancer into remission. While visiting me in my hospital room a day or two before that big day, my boyfriend broke up with me.

I was devastated.

The Second Time

It was eight months after I was diagnosed with type 2 diabetes, back in 1999. I was hellbent on managing my diabetes with diet and exercise only. Part of my treatment plan was seeing a dietitian for regular consultations. Those first eight months I obsessively watched every single piece of food I put in my mouth and religiously worked out at least three times a week. I got my blood sugars under excellent control, but could not succeed in losing a single pound.

Mentioning this to the dietitian, she replied, "I guess you must have a farmer body. You have to be moving for most of your day in order for you to lose weigh."

What the heck! Well, screw this then...

The Third Time

Talk about adding insult to injury. The trip-and-fall accident that put me on my journey with chronic pain and chronic fatigue happened while I was at work. Which meant my initial medical treatment didn't come from my own personal doctor, but a contracted occupational medicine clinic. Not only did they not help, the treatments they prescribed made my pain worse. Oh yeah, and when I reported that my pain was getting worse, not better, I was accused of not wanting to go back to work.

So after three weeks, when I was discharged from medical care and told I could go back to work--the medical staff totally ignoring, disregarding, and disbelieving my very real and very disabling pain--it felt like the last straw that broke the proverbial camel's back.

I was so despondent by the time I made it to my own doctor's office that I told him I couldn't take it anymore.

The Last Time

A former rheumatologist convinced me that I needed to treat my chronic Hepatitis C infection since he thought it was implicated in my fibromyalgia symptoms. I got enrolled into a clinical study in August 2007. About two weeks in, all hell broke loose. I developed multiple viral and bacterial infections: eye infection, double ear infections, sinus infection and severe upper respiratory infection.

A week later I was in the Emergency Room being evaluated for a possible heart attack.

Turns out, I was in bad shape due to a flare-up of my undiagnosed dysautonomia, with symptoms reaching a higher level of intensity. The symptoms made me feel so agitated that I honestly thought I was going to have to be sedated. After several unreturned calls to my rheumatologist, a staff member at the Cedars Sinai Chronic Pain and Fibromyalgia Program intervened on my behalf and got the doctor to call me back. He prescribed a beta-blocker that made a world of difference. But it was too late...

The Hepatitis C treatment, subsequent hospitalization and dysautonomia symptom overload left me bed-bound and facing a long three month climb back to my previous level of functioning.

A Saving Grace

So what helped me weather these storms and get to a better place? My saving grace can be summed up with the one amazing quote (thanks to my friend @sonjathegreat for posting this yesterday on Twitter):

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”

~Thich Nhat Hanh

Quite honestly, it is the hope that tomorrow will be a better day that has helped me get through all these times of emotional upheaval and illness. Hope helps with all the everyday setbacks, adversities and hardships too. I've come to rely on the fact that the promise of a better tomorrow makes all my misfortunes bearable.

My saving grace is that hope heals.

What is your saving grace? Share yours with me when you leave me some comment love...

Ode to My Cereal Bowl

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I don't eat cereal for breakfast.

"What?" you ask.

That's right, I don't eat cereal for breakfast.

I don't complain about all the dietary restrictions having type 2 diabetes places on me, probably because I have been dealing with this for 11 years now and have become quite accustomed to all the things I have to do to keep my blood sugar under control. Things like eating meals that balanced carbohydrates (carbs), protein and fat, watching my portion sizes and limiting my carb intake to about 45 grams per meal. I accept that breakfast is the hardest meal of the day to eat, simply because breaking the fast often means inducing high blood sugar, even when I reduced carbs to only 15 grams at that meal.

If you are not diabetic, you probably have never read the nutritional information on the side of the cereal box or the carton of milk. So you might be surprised that milk has carbs too, in the form of sugar lactose. Soy milk is really no alternative; it has more carbs than cow's or goat's milk and even less protein and fat. Between the cereal and the milk, I'm was lucky to get one half of the suggested serving of cereal (typically about 1/2 cup) with about 1/2 cup of milk for a total of about 20 grams of carbs. That's not much of a breakfast.

So you see, a regular bowl of cereal just has too many carbs to be considered a breakfast food for me, even if I throw in a handful of nuts to try and balance the carbs with some extra fat and protein.

Up until a couple of month ago, the only breakfast cereal-like food I could eat was oatmeal. I'm not sure why oatmeal was O.K. A small bowl of plain oatmeal made with water (about 15 grams of carbs), with a soft boiled egg on the side, was the closest thing to cereal I could eat on a regular basis.

Then my endocrinologist switched me from Byetta to Victoza, a new injectable medication for people with type 2 diabetes. Victoza is a once-daily dose of the new-generation GLP-1 drugs that stimulate pancreas cells to release insulin when blood sugar levels are high. Now, with Victoza, I can eat Kashi Go Lean cereal (1 cup = 1 gram fat, 30 grams carbs and 13 grams protein) with milk (1 cup = 2.5 grams fat, 13 grams carbs and 8 grams protein) with a handful of walnuts (7 halves = 9 grams fat and 2 grams protein) for dinner without my blood sugar skyrocketing and making me regret each bite for several hours afterward.

With Victoza, my fasting blood sugars are closer to the normal, non-diabetic range (70 to 110) than they have been since I have been diabetic. Yesterday my fasting blood glucose was 113! They used to be between 130 and 140 on a good day. My after meal blood sugars are equally impressive. I've also noticed that my stomach seems flatter and my appetite smaller too.

I'm enjoying my victory with Victoza!

I can't believe that I can eat cereal again. I'm tickled that I quite possibly can bring my cereal bowls out of retirement. I'm working up the courage to actually try eating cereal for breakfast to see if it is doable. All of this makes me grateful that diabetes is one of my many chronic illnesses that I can enjoy a modicum of control over. Which is perhaps why I don't often blog or complain about my type 2 diabetes.

Yes, I almost feel like a normally eating person again.

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Are All My Chronic Conditions Making Me Fat?

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I hate getting a lecture from a doctor about how I need to lose weight and it happened again this past Tuesday.

I finally went for a follow-up appointment with my hepatologist (liver doctor). I've been putting it off because I know from the HCV Advocate that there aren't any new treatments for Hepatitis C (HCV) yet. But going every so often means I get the labs drawn by my primary care doctor reviewed by the HCV specialist and I get to talk to him about what I am currently worried about. So Tuesday I talked to him about my concerns that having HCV and type 2 diabetes, how it puts me at greater risk for developing liver cancer. The specialist added that it increases my risk of cirrhosis too. I mentioned that I don't drink alcohol and I eat a healthy diet and he replied that losing weight would also benefit my liver too.

Problem is, I have seriously tried losing weigh ever since I was diagnosed with type 2 diabetes in 1999 and I have not succeeded. Which got me wondering Tuesday evening if all my chronic conditions make losing weight much more difficult. So I conducted my own good old-fashioned, scientific look-back study on my weight issues and here is what I discovered:

• FACT: While I have always been on the heavier side of the 'recommended weight range' for my height, I didn't become overweight (and more) until around 1994.
• FACT: I have been HCV+ since 1988, in my early 20's. I have chronic active Hepatitis C infection with a viral load of 10 million.
  
• FACT: I have had type 2 diabetes since January 1999, when I was in my mid-30's.
• FACT: Since developing fibromaylgia and related pain and fatigue in 2004, I've experienced sleep disorders including sleep apnea, delayed phase sleep disorder and lack of stage 4 deep sleep.
• FACT: Since I now know that I have entered menopause early due to my cancer treatment, I also now know that I have been peri-menopausal for the last 10 years or so.
• FACT: Being on HCV treatment for 3 weeks in 2007 helped me lose 15 pounds without even trying. It also seemed to help my aches and pains too. Too bad it worsened my dysautonomia symptoms, caused me to break out in multiple infections (both ears, my sinuses and one of my eyes) and landed me in the hospital because they thought I had a heart attack.
  

I spend some time every few months researching my conditions on the Internet in an effort to keep up with new medical discoveries and treatments related to my conditions and illnesses. But it wasn't until Tuesday evening that I put the bits and pieces that I know together, and they came together like a puzzle:

• HCV & Type 2 Diabetes: I recently read at Science Daily that researchers in Australia confirmed that HCV infection makes you insulin resistant and 3 to 4 times more likely to develop type 2 diabetes. They commented that being HCV+ seems to speed the development of type 2 diabetes earlier in individuals who have a family history of adult-onset diabetes. So instead of getting it between ages 65 to 70 (like my paternal grandfather), HCV+ individuals get diabetes at ages 35 to 40. Yup, that is exactly what happened to me.
• Peri-menopause, Menopause & Weight Gain: Weight gain during this period is very common for all women in this phase of their lives and hormonal changes can make losing weigh very difficult. Fabulous!
  
• Sleep Disorders & Weight Problems: Turns out, lack of sleep, poor quality sleep and sleep apnea are associated with weight gain. Researchers have found that lack of sleep increases appetite. Unfortunately, while I use a CPAP machine to successfully treat my sleep apnea, my sleep doctor has not found a remedy for my poor quality sleep. Just terrific...
  

When I was done, a light bulb went off. That's it! That's it! Oh good grief! No wonder I am having so much trouble losing weight.

I know my doctors shake their heads and don't believe me when I say I have tried and failed at losing weight. But here is scientific proof of all the things that are sabotaging my efforts!

So how can I counteract all these factors and lose weight?

I have no idea. But I do know I probably shouldn't ask my doctors because they have no clue either.

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Life Lessons: Letting Go of Maladaptive Coping Mechanisms

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When I was growing up, I learned to use food to deal with the the bad things that happened to me. I learned this coping mechanism from my grandmother, with whom I shared a strong, loving bond. You see, my grandma was an outstanding cook. She loved me with her every day comfort foods and her wonderful holiday meals, full of luscious homemade sweets and satisfying carbohydrates. My last memory of my grandma before her death is of her offering the 16 year old me a bowl of ice cream to console me after a huge fight I had with my mother.

My mother, on the other hand, was a horrible cook. She also had an unhealthy preoccupation with weight. My mother obsessed about how much relatives on my father's side of the family weighed, which translated into her overreacting when she perceived that me, my brother or sisters were gaining any weight. Genetically speaking, my father's side of the family tends towards individuals being heavier, and there are members of that side of my family who are overweight or obese. However, when I look at pictures of myself during childhood, I do not see a child or teenage that was overweight or obese. Yet I remember going to see a nutritionist when I was in high school and for the life of me I have no idea why.

I think as a child you use what you know to get through the tough parts of childhood. I grew up with an abusive mother who triggered abandonment issues in me--fear and stress instead of love and bonding. I used food back then to soothe and feel better about myself. In retrospect, it wasn't the most healthy or life-affirming way to deal with my feelings, which is why as an adult I acknowledge that food was a maladaptive coping mechanism. But I can't fault my childhood self for figuring out a way to deal with some pretty untenable situations created by the adults in her life.

Here is the thing about maladaptive coping mechanisms learned in childhood: in times of stress, emotional upset and adversity, they are the things your grab for first to help you cope in adulthood.

When I was diagnosed with cancer at age 22, my mother and my family once again disappointed me with their lack of love and support. It was then that a caring nurse suggested I talk with a mental health professional. Fortunately for me, in that time of crisis, I was willing and open to trying a new way of coping. I went thinking that I was going to talk about how cancer ruined my life and my relationship with my family. Instead, I found a safe place to talk about all those strong emotions I was avoiding with food.

In my case, I loved my grandma more than any other adult in my childhood. Her death when I was 16 devastated me. My lack of love and support from other adults in my life to help me process my grief and loss after her death only reinforced my reliance on food to help soothe and comfort me. It was, after all, something my grandma and I bonded over. And yet, as I discovered in adulthood, it was her love that nurtured the seed of my self-esteem. As my self-esteem grew through my work in therapy, so too did my determination to reexamine my coping styles and choose more healthy ways to deal with adversity as an adult.

And I get to practice these new coping mechanisms a lot because there certainly hasn't been a lack of adversity in my adult life...

A lot of years in psychotherapy helped me learned to substitute food with other, more healthy and helpful ways to deal with strong emotions. That is, for the most part. Then being diagnosed with type 2 diabetes in 1999 pretty much changed my relationship with food. Overeating wreaked havoc on my blood sugar and my homeostasis resulting in strong, unpleasant consequences that counteracted any brief, temporary benefit overeating offered. Which has reinforced in a big way that eating couple of chocolate chip cookies is O.K., but eating the whole bag of cookies only insures a world full of hurt afterward.

I mention this today because I know someone who is struggling with her own maladaptive coping mechanisms and is having a rough time of it. She is in her twenties, and probably much like me at that age, she thinks that there is something wrong with her because she continues to use her maladaptive coping mechanisms. The thing is, there isn't anything wrong with her. I know this because I now understand more about human behavior. If these maladaptive coping mechanisms didn't work at all, we wouldn't repeat these behaviors over and over again. We learn to repeat what works, even if it only really helps a little or creates the illusion of a solution. Which means changing our behavior to something more healthy, something different, is inherently difficult.

We all have our issues growing up. We all develop ways of coping with the world when we are young. The wonderful thing about being an adult is that we get to reexamine these coping mechanisms, decide if they still work for us and, if we want to, we can choose to change and replace them. Sure, it is hard work. But over time, I found the reward of feeling better about myself trumps holding on to something that doesn't really work for me anymore.

In her own time, I hope my friend discovers this for herself too.

Diabetes-Friendly: My Own Food Revolution

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Writing my post from yesterday about fibro-friendly, my favorite fibromyalgia coping strategy, got me thinking about my prior experiences in making life diabetes-friendly. Well, that and watching the new TV show, Jamie Oliver's Food Revolution.

I realized that before my life with fibromyalgia and chronic pain, I learned to deal with life with Type 2 diabetes.

I don't talk much about my diabetes, probably because after living with it for over 10 years now, coping with diabetes is a routine part of my life. What a difference time makes. Ten years ago I struggled to understand what having diabetes meant to me and my relationship with food.

When I was first diagnosed, I used food diaries to get a handle of my situation. I spent a lot of time recording and analyzing my food choices. So when I watched the preview of Food Revolution last Sunday, I really empathized with the people in Huntington, West Virginia who were asked to take the proverbial good, hard look at what they were eating and feeding the children in the school cafeteria.

I find myself at a loss to explain the exact emotional state that gets triggered when I am asked to review my food diaries. If I had to guess, I would say it is fear and anger that my food choices being judged, plus some frustration and resentment over having to limit some of the foods I really enjoy but don't fit with my new eating plan. I think I saw some of those same emotions in the people of Huntington, West Virginia.

What being diabetic means to me today is choosing to limit food portion sizes and balancing meals between protein, carbs and fat and eating lots of vegetables. The fact that most people do not eat this way, nor do most restaurants and fast food chains serve up food this way, makes diabetic eating a challenge. I'm not immune to the societal trends towards fast food, sugar and junk food, but for the most part I can resist making poor food choices. But eating healthy becomes really hard when the people around me eat whatever they want, whenever they want it.

I tribute my success in changing my eating habits to my Grandma Ann. She introduced me to vegetables at a young age and taught me how to both eat and enjoy them. She modeled good food choices for me and because I revered and respected her, I made big efforts to like the new foods she asked me to eat. She inspired my love of cooking as well (though I admit that more recently fibromyalgia has made cooking more difficult to do.) So really all I needed to do was tweak my eating behavior and tip the scale a bit more towards vegetables and away from carbs.

So I do get it when the folks in Huntington get upset when asked to change how they eat. I get it why they resist change. What they are being asked to do is counter-cultural, out of the norm and completely foreign to the status quo. I just hope they can see beyond their resistance to the compelling reasons behind the need for change. Because making good food choices, and teaching their children to do the same, might help them all avoid having to learn to make their lives diabetes-friendly.

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I want a new drug...

Image by Curtis Gregory Perry via Flickr

I want a new drug,
One that does what it should.
One that won't make me feel too bad,
One that won't make me feel too good...

~Huey Lewis & the News

I've been doing some Internet research and came across two new-to-me drugs that I want to try, one for my type 2 diabetes and one for my fibromylagia and sleep disorders.

Ordinarily I don't get that excited about new medications, mostly because my experiences have not been all that positive. Most medications I tried for fibromyalgia were long on side-effects and short on positive results. I've had my fair share of problems with diabetes drugs too...a sulfonylurea drug actually made my blood sugar go up instead of down, probably because sulfonylureas are related to the sulfa class of drugs which I am allergic to, but my doctor prescribed it for me anyway.

So what am I all excited about?

Nabilone

The first drug I want to try is Nabilone, a synthetic cannabinoid used for nausea and neuropathic pain. That would be marijuana in pill form. I admit I have tried medical marijuana and it did help with my pain, especially when I experienced a flare-up. But I am not a smoker and there is something about marijuana that make me feel a bit anxious, both from a legal perspective and a physical 'I just took a hit and now I feel paranoid' standpoint. The good news is that the standardized pill form eliminates the risks from smoking, addiction and getting busted by the cops. I am also hoping the pill takes out whatever chemicals cause the marijuana-induced anxiety too.

What caught my eye was research results from Canada showing that Nabilone helped persons with fibromyalgia get better sleep, and I am all about getting better sleep. In the article stated that Nabilone didn't help fibromyalgia pain, which is O.K. by me. Liked I have discussed before, I think if I could just get some better sleep I might have a reduction in my fibromyalgia pain as a result.

Click here to read the article I found: The Effects of Nabilone on Sleep in Fibromyalgia: Results of a Randomized Controlled Trial


Victoza

I already use the injectable medication Byetta, an incretin mimetic, for my type 2 diabetes. I use this medication twice a day, before breakfast and dinner. It does a great job of keeping my postprandial (post meal) blood sugar under control, but only lasts about 3 hours after the injection. That means that I go without medication at lunch and do not have a long acting diabetes drug in my system for most of the day.

I have been waiting to hear about a longer acting form of Byetta, but it seems that Novo-Nordisk has beat the makers of Byetta, Amylin and Lilly, to the punch.

Victoza is the first FDA approved long acting incretin mimetic. It only requires one injection per day and last 24 hours. That means that it works both after meals and throughout the day. That's good news for me, since I have something called "dawn syndrome" which causes my blood sugar to go up overnight, even though I am not eating.

I can't wait to talk to my diabetologist Dr. Anne Peters at my next appointment in April to see if Victoza is right for me. In the meantime, you can read the article I found about this new diabetes medication by clicking here: New Diabetes Drug Victoza Approved: Victoza Is a Once-Daily Injection for Adults With Type 2 Diabetes.


I'll update you if my doctors agree and allow me to try these two drugs. In the meantime, I've got that Huey Lewis and the News song stuck in my head. Is it stuck in your head too?

I want a new drug,
One that won't make me sick,
One that won' make me crash my car,
Or make me feel three feet thick.

I want a new drug,
One that won't hurt my head,
One that won't make my mouth too dry,
Or make my eyes too red.

One that won't make me nervous,
Wondering what to do...

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Out of Order

Image by snacktime2007 via Flickr

Since I finished my duties as the host of the last Patients for a Moment blog carnival, I took some time off to attend to a cold I caught last Monday. Only problem is that I still have the same cold, different symptoms, a week later. Since yesterday was a holiday, President's Day here in the U.S., to get checked out required a trip to the FastTrack ER at Santa Monica-UCLA Hospital. Luckily, while my husband did not have he day off, my sister Cyndie did and came down from the Valley to take me there.

I really don't like having to go to such extremes, but with type 2 diabetes and my blood sugars on the high side, I start getting really worried when any viral illness starts dragging out. The longer I stay congested the greater the possibility that a secondary infection will rear its ugly head. The doctor I saw did order a chest x-ray which was clear, which is good news. I'm not sure he really understood my concerns and reasons for coming to the ER and I am concerned that I did not walk away with a prescription for an antibiotic to prevent this from happening.

I know that antibiotics don't help you get over a cold or flu, by the way. I am really clear on that point. What I am worried about is the potential for bacterial infections to take advantage of the the extra mucous that is everywhere inside me right now. Seems my particular combination of health problems make getting over a cold a prolonged and infection-prone affair.

So before I started writing this post, I send an email to my family medicine doctor outlining my concerns. She'll probably get it tomorrow and she can review what was done for me in the ER and give me her opinion. Really, all I am trying to do is prevent another trip this week to see a doctor and then go to the pharmacy. Nothing would irk me more than to have to make multiple trips to be seem because someone wasn't proactive enough with their care of my symptoms.

I'm sick, tired and grumpy and just want to stay home and get better, but better seems a long way off right now. At least the cough syrup with codeine knocked me out yesterday afternoon and I was able to get some better sleep. Hopefully that will help my health and outlook.

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