Do You Know More Than Your Doctor?

Welcome to another edition of the Question of the Week.


As I am getting ready to start Hepatitis C (HCV) treatment, I've been running across some pretty interesting pieces of information that I think will make my treatment experience more successful. This information has come to me courtesy of the websites, Facebook groups, listserves and folks on Twitter I subscribe to or follow who review and report on medical research and medical news.   And I find myself feeling awfully grateful towards them for bringing these things to my attention.

With So Much Information, Can Your Doctor Keep Up? 

That said, I can't help but feel some disappointment that my doctors aren't the ones sharing this information with me.  But I guess their busy schedules don't leave them with enough time to keep up with their medical journal reading.  Or maybe it is the fact that, with communication advances like the Internet, there is just so much more information being shared from all over the world that my doctors just can't keep up.  Either way, it sort of leaves me in the awkward position of knowing more about new research findings than my doctors.

So today I want to:

• share a recent discovery, 
• talk about where to go to find illness and treatment-related information and 
• ask if you too know more than your doctor.

My Discovery About Vitamin D and HCV

Several years ago, I was diagnosed with a low Vitamin D level by my endocrinologist. Since then, I have been taking a Vitamin D supplement which has helped me get my Vitamin D level back into the normal range.  Along the way, I have found that I am getting sick from colds, flus and other bugs a lot less and, when I do get sick, the symptoms of those illnesses are much less intense.

Today I was alerted by a HCV group I belong to on Facebook about a research study on HCV and vitamin D.  About 84% of the HCV+ subjects in this study had a vitamin D deficiency.  The researchers gave vitamin D supplements to these patient who were all undergoing HCV treatment.  They found that boosting vitamin D levels back into the normal range (32 ng/mL) improved a patient's chances of getting a sustained virological response (SVR) to treatment from 42% to 86%.  In addition, only 8% of patients taking vitamin D supplements relapsed after treatment compared to 36% of patients with low vitamin D levels who were not taking a vitamin D supplement.

That sounds pretty impressive to me. So I'm taking a copy of this research article to my next appointment and discussing it with my hepatologist.  If he agrees with the findings, I am going to request that he monitor my Vitamin D level closely during treatment.

Finding the Information That is Out There

I know this kind of information is out there for other illnesses and conditions too.

In fact, I just read a book about cancer treatment (that I will be reviewing later in the week) that talks about using medications and supplements to synergistically enhanced the effectiveness of conventional cancer treatments.  According to the author, this "cocktail approach" to treatment has produced some pretty amazing results.

If you live with fibromyalgia, myalgic encepholopathy, chronic fatigue syndrome or multiple chemical sensitivities, a group called Co-Cure compiles this kind of information for you from a wide variety of reputable sources.  Visit their website and check out the research updates and reading room pages.  You can also subscribe to updates via email by going to the list operations page.

Besides books and trusted medical websites, another place to search is Pub Med.  Pub Med is the U.S. National Library of Medicine MEDLINE service that contains more that 21 million citations for biomedical literature.  Check out their Quick Start guide for video tutorials, FAQs and links to learn more about searching for information on Pub Med.

Sharing the Information with Your Doctor

Once you have the information, it's time to talk with your healthcare provider. You'll need their help and medical expertise to discern if these new medications and treatment approaches are right for you and your specific situation.  Be sure to take a copy of the article with you to share with your doctor.

I think it is a real litmus test of your working relationship with your doctor when you share information with them.  So don't let fear stop you.  You'll gain valuable information about your doctor's commitment to your good health and well being by sharing information with them.

When I have received a less than supportive response, I've taken it as a sign that it was time to find a better doctor.

So do you know more than your doctor?  What trusted resources do you use to keep on top of new medical information? Do you feel comfortable sharing information with your doctor?  Do you have any advice for others about sharing information with health care providers?

Please share your response on the Oh My Aches and Pains! Facebook page or below in the comments section.

Related articles

• Hepatitis C: The Facts (ohmyachesandpains.info)
• Bits and Pieces: Overwhelmed with Health Care at Day 12 (ohmyachesandpains.info)
• Why I've Decided to Treat My Hepatitis C Infection Now (ohmyachesandpains.info)

Question of the Week: Ever Take Out Your Frustration On Your Significant Other?

Over the weekend I read a great post by the Rheumatoid Arthritis Guy titled 10 Things I’ve Learned From Living With Chronic Illness.  It is a solid article, one that I could totally relate to in so many ways.  But I admit when I got 2/3 of the way through it I started feeling kinda bad...

Here is what triggered that reaction:

7)  No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me.

That is excellent advice.  But I admit that I don't always follow this advice and I'm sort of ashamed to admit this.  I mostly feel bad because it is my husband that gets the brunt of my bad behavior when I go "off the rails."

I hate it when my pain and fatigue turn me into an ugly person.

Thankfully this doesn't happen that often.  Although it would happen even less if I stopped pushing myself to the limits of what I can do and paid a little closer attention to pacing myself better.  And this time of year, with the holidays coming up and the weather making my symptoms worse, is a real challenge for me when it comes to pacing.    

The long and the short of this is that I need to redouble my efforts in trying to make this an operating principle in my life.  Because if you are married or involved in a relationship, you know how easy it is to take things out on your partner.  You don't have to be sick for this to happen!

It behooves us all to remember that our partners aren't our punching bags.  We need to learn mature and respectful ways to deal with our pricklier feelings.  So the next time I want to let him have it, I think I'll work on taking a time out instead.  Then, when I am cooled off, I can decide if I need to be angry at him or not.

Since I have been a bit remiss in this regard, I need to make it a priority to start replenishing the bank of good feelings between us. Maybe I can start by baking him a batch of his favorite cookies and doing one of his chores for him.

I do this for the sake of our marriage and to maintain a good relationship with my spouse.  I also do this because I can see how I'll be increasing my withdrawals from the bank very soon.  I know that the new year is going to bring me many more periods of feeling bad when I start Hepatitis C treatment...and I am going to really need my husband's support to get through it.

So can you relate?  Do you sometimes take your anger and frustration out of the people closest to you too?  Is this something that has gotten worse since you started living with chronic illness?

I'd love to hear your stories and some of the things you do to mend fences with your significant others.  Please feel free to share your thoughts in a comment or over on the Oh My Aches and Pains! Facebook page.

Am I Trading One Pain for Another?

back by cillenj

It's been three weeks now since my carpal tunnel surgery and I'm already back to using my right hand without any restrictions from my doctor.  I was worried about a post-operative flare-up right after surgery, but thankfully that didn't happen.  What is happening right now is an unexpected shift in my experience of my pain symptoms.

I hate to say this, but I think I may have traded one kind of pain for another.  Let me explain:

When I first started having body-wide fibromyalgia pain after a trip-and-fall accident in 2004, my attention was drawn to all of my pain, all over my body.  I was simply overcome with pain.  Initially, this was quite overwhelming at times.

But as the days have turned into months, and the months have turned into years, my perception and experience of my pain has changed.  It seems my brain just can't continue to be focused on all my pain at once.  So instead it picks the most painful areas and registers those as being in pain.  I think the rest of my pain has been translated into an overall feeling of overwhelming fatigue, which I guess makes some sense since living with chronic pain is very tiring.

Mind you, this is just a trick my brain plays on me.  My body-wide pain is still there and it doesn't take much for me to be reminded of it. Just a simple touch can bring it back into my awareness.

But now that I have removed the source of my right hand pain, the compression of my median nerve, it appears my brain is readjusting its pain barometer.  As a result, it feels like my brain is reevaluating which body parts should be labeled as priority pain centers. All I know for sure is that my balance has been upset and now there are areas really hurting that haven't been on my radar for a while now.

So far, prime candidates are my left hand, which is really bothering me even though I've had carpal tunnel symptoms there for the same amount of time.  I can only surmise that with the focus off my right hand, my brain is paying much more attention to my left.  My neck is also screaming out in pain now and my low back is very unhappy too.

Ugh.

Ordinarily I would wait this out and hope *fingers-crossed* that everything would get settled back down with time.  But I have scheduled surgery for my left hand on October 12, which means I am going to confuse my body and brain even further.  I'm counting on my body focusing on the post-surgery increase in pain in my left hand for a week or so afterward.  What happens after that will be anyone's guess...

Don't get me wrong.  I am enjoying my right hand and its more symptom-free status.  I welcome being able to use both of my hands to garden, cook and do arts and crafts more as the result of less pain.  I'm even hoping that maybe, just maybe, a decrease in hand pain might help decrease my overall pain level. (A girl can dream, right?)

Where ever I end up down the road, right now successful carpal tunnel surgery seems to be causing some kind of  pain perception shifting effect throughout my body.

Related articles

• My Carpal Tunnel Surgery Photolog (ohmyachesandpains.info)
• Mission 2011: Happiness is Having a Plan (ohmyachesandpains.info)
• Question of the Week: How Do You Handle Procedure Anxiety? (ohmyachesandpains.info)

Let's Talk About Sex and Chronic Illness

Image by EssG via Flickr
Last night as I was standing in front of the microwave waiting for my leftover won ton soup to reheat, I started thinking about our upcoming 13th wedding anniversary on May 31. Which lead to thoughts about the Penny in the Jar theory of marital sex.

For the uninitiated, the theory goes something like this:

Put a penny in a jar for every time you had sex BEFORE you got married.
Now remove a penny for every time you have sex AFTER marriage.
They say that once you are married, you’ll never empty the jar.

That got me thinking about all the ways that my chronic illnesses have been pilfering my sex pennies! So here I go: I am going to talk about how my chronic illnesses affect my sex life.

Hepatitis C

Being a responsible adult, I let my partner know that I had a blood-borne illness I could potentially spread through sexual contact. Granted, the odds of passing Hepatitis C (HCV) in a monogamous heterosexual relationship is only about 1% per year. But when you are telling someone you want to get intimate with that you have HCV, you never know how they are going to respond. Disclosure can be a real relationship litmus test.

My husband obviously passed this test with flying colors. We "had the talk" and he decided he felt comfortable with this very small risk. Yet despite our decision, I still feel the occasion pang of worry every once in a while.

Infertility

Nothing has the power to make sex not fun like an infertility diagnosis.

We started with a lot of hopeful sex in the service of getting pregnant, followed by disappointment when it was clear it wasn't happen. So we tried again, this time tinged with fear, doubt, duty and hope, only to be disappointed again. By the time we got to the infertility doctor's office where we willing submitted to humiliating exams and got the subsequent bad news, the joy of sex has been replace by feelings closer to anger, betrayal and sadness.

From that bleak place, it takes quite a bit of work to get back to a place where lovemaking becomes something fun once again.

Chronic Pain and Fatigue

Talk about 'Not tonight honey.'

These two buzz kills really drain my penny jar. So even when I am in the mood, they rear their ugly heads with physical roadblocks to having fun in the bedroom. I mean, how sexy am I when I am complaining about being in pain or I am needing to stop and rest like every five minutes?

Like everything else in my life, I've needed to figure out ways to work around these handicaps in the bedroom. This means I am doing "it" much less than I would like simply because I don't have the energy. To put it another way, my sex life is more about quality than quantity these days.

Early Menopause

Yes, I know that all women deal with this sooner or later. Personally, I wish it had been later. My experience with early menopause, caused by my cancer treatment 23 years ago, has not been a pleasant one. Plus I am at a disadvantage here because I don't have a mother or aunt to guide me through this transition. Not that I would necessarily be talking with them about how menopause is putting a crimp in my sex life...

...then again, I never thought I'd be writing a blog post about this either!

In conclusion, all I can say is thank goodness my marriage is about more than just sex. I am grateful that I am married to a man who sees me as more than just a lover. Being each others partners, friends and confidantes really helps smooth things over when chronic illness makes lovemaking complicated.

So sure, chronic illness is draining pennies out of my marital sex jar. And sure, for me having chronic illness means I'm not having as much fun in the bedroom as I would like. But I still have a sex life.

Related articles

• Love & Marriage...and Chronic Illness (ohmyachesandpains.info)

Question of the Week: Are you struggling with making changes?

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I write a lot about strategies that I've used to make a lot of changes in my life in response to the challenge of living with multiple chronic illnesses. Even though I've had a lot of success, I'm not perfect. There are still some aspects of life of chronic illness that I struggle to get a handle on.

Like you, I put a lot of effort into following the advice of my healthcare team and implementing their suggestions. One suggestion that I've heard over and over again is, 'You need to make exercise part of your fibromyalgia self-care plan.' In trying to implement this suggestion I've run into a lot of problems, with a major stumbling block: something called post-exertional fatigue.

What is post-exertional fatigue? It is an intense state of exhaustion brought on by physical exertion. It begins anywhere from an hour to 24 hours after exercise and can last up to 72 hours. Post-exertional fatigue is actually one of the hallmarks used to diagnose chronic fatigue syndrome, although in my case this could also be related to my chronic hepatitis C infection.

Prior to 2004, I used to work out on average three times a week for 30 to 45 minutes a session. Since living with fibromyalgia and chronic fatigue, I have found that walking a block can wipe me out for several days. It boggles my mind that so little exercise can wreak havoc in such a big way. And perhaps getting stuck on the absurdity of my current situation has created a stumbling block preventing me from overcoming this obstacle.

I came to this realization after my consultation for dysautonomia at the Mayo Clinic in Arizona. When Dr. Goodman suggested that exercise needs to be part of my self-care plan, he gave me detailed instructions. First, he handed me a pamphlet with specific exercises geared towards persons living with autonomic dysfunction. Then he asked me to start with a few of these exercises. The first goal was to work towards completing them all on a daily basis. Then, after a month of doing all these simple stretching and strengthening moves, he recommended that I try adding some cardio exercise for just three minutes three times a week. He acknowledged that this may be very difficult for me to do initially, so he further advised me to take it slow and easy. He also said that it might take quite a long time for me to build up to longer exercise sessions.

So as I work with this new way at looking at exercise, I feel a great sense of appreciation for how Dr. Goodman approached the subject. I can tell you that it really made a difference when he gave me specific instructions while at the same time acknowledging how difficult exercise is for someone like me. In validating my experience, he helped me see that there may be a way to work around my obstacles to exercise.

In light of this experience, I'm wondering what changes you are struggling to make. I'm also wondering what you think you might need to help you move past struggling to success.

To get this discussion going, I invite you to leave a comment here or on the OMA&P! Facebook page. In addition to sharing with us the areas in which you are having problems, feel free to offer your suggestions about what has worked for you to others who are struggling in areas you feel you have mastered.

10 New Words to Describe My Fatigue

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Did you know that the Eskimos have 100 words for snow? Seems if you live with snow day in, day out, for your entire life, just one word isn't enough to describe the nuances, variations and subtleties in each and every snowfall.

Well I live with severe fatigue every day and I am beginning to see that the words "tired," "exhausted," and "fatigued" just aren't enough either. So I went looking for some new words to describe my constant companion and I think you'll get a chuckle from the results.

baked - a kind of tired similar to being drugged

-> I am so totally baked I can hardly move.

bedraggled - so exhausted you look like hell

-> After a night of no sleep, I am bedraggled.

cashed - so drained you are running on empty

-> Man I am completely cashed.

crunchy - feeling so sick and ill that it makes you dog-tired too

-> I am so flared up right now I feel crunchy.

deaded - so out of energy that death will be your next stop

-> I'm so deaded, I can't get out of bed today.

hit - so weary you feel like you've been beat up in a fight

-> I'm hit and headed for a nap of epic proportions.

inquant - fatigued to the point of ludicrous hysteria

-> I am so inquant after no sleep that all I can do is laugh.

knackered - extremely tired (comes from a term used to describe animals too old, sick or worn to be eaten)

-> My illnesses have made me knackered.

smoked - physically exhausted or burned out

-> Grocery shopping just smoked me.

zonked - mentally tired or "out of it"

-> I am too zonked to add 2 + 2.

Can you relate? If so, what unusual words for fatigue would you add to my list?

My thanks to the The Online Slang Dictionary for inspiring my new word choices.

Mission 2011: Stand Less, Recline More

As January comes to an end, it's time for one last Mission 2011 post on the topic of making activities fibro-friendly by modifying body position.

This week I revisited the concept of a body position hierarchy and reviewed the things I need to keep in mind whenever I am standing, sitting and reclining.

The Body Position Hierarchy

It might seem strange to look at body positions and arrange them in an order from most energy consuming to least. But when you live with chronic illness you quickly realize that how you move your body can have a tremendous impact on your pain and fatigue levels.

Did you know that your heart rate is a pretty good indicator of how hard your body is working? I learned this when I wore a chest strap heart rate monitor while engaging in my every day activities. It really helped me see the impact my body position had on my heart rate. It was quite enlightening! (You can read more about the benefits of using a heart rate monitor at the CFIDS and Fibromyalgia Self Help site.)

The Workout = Standing

The act of standing actually recruits a large set of your muscles, from your legs, buttocks and stomach to your back and shoulders. Plus while you stand your muscles are continously contracting.

Fortunately, I've learned some strategies for dealing with, and avoiding, standing:

• I bring along a cane/seat combination and sit instead of stand. (This one is my hands-down favorite.)
• I use the shopping scooter the store provides. If it is not available, then I grab a shopping cart to rest one foot on the bar between the back wheels and lean against the handle while waiting in line.
  
• I place one foot slightly in front and one foot slightly behind my body and sway forward and back while standing. The movement allows my muscles to alternate between contracting and resting, which in turn helps me stay upright longer. (I was taught this technique by a physical therapist who said this movement is more energy conserving than swaying side-to-side.)
  

The Energy Conserver = Sitting

This body position save a ton of energy over standing, but still can be pain and fatigue inducing.

Why?

For starters, with your legs positioned below your thighs, your heart needs to use extra energy to get the blood in your legs back to your heart. For most healthy people, this isn't even noticeable, but if you have problems with fatigue, raising your heart rate even a little over an extended period of time can make fatigue worse.

Another consideration is that maintaining this position for extended periods can actually contribute to more stiffness and pain. This is especially true when you are stuck in the car or on a plane while traveling. Taking the time to gently stretch, wiggle or get up and move every hour or so combats this problem. Look here for some suggested seated stretches for people with fibromyalgia.

Plus if you are short in height like me, another problem you may run into is not being able to rest your feet flat on the floor. Having to support the weight of your legs with your thighs while you sit is going to burn even more energy, not to mention contribute to back pain.

This is especially problematic for me in, of all places, the doctor's office. My legs always dangle off the edge of the exam table, so I move to the chair or stool in the room while waiting for the doctor. At home, something as simple as a phone book or small stool will make a huge difference when you are seated in a chair that is too tall for you.

The Most Restful = Reclining

You have probably figured out that reclining solves the problem of your heart having to work a bit harder to keep blood flowing back from your legs. While a La-Z Boy recliner can get the job done in royal style, you can also achieve this in a simple and more budget-friendly manner by placing an ottoman, stool, coffee table or another chair in front of you while sitting. Soften up a hard surface by adding a pillow or cushion and you'll be comfortably reclining in no time.

Even while lounging in a top-of-the-line recliner, you may find you need to add a lumbar support pillow or neck support pillow to achieve a truly comfortable and ergonomic position.

Knowledge is Power

I think knowing this body position hierarchy can help anyone make more informed and fibro-friendly choices.

For example, knowing that sitting is more energy conserving than standing, you might choose riding a bicycle instead of walking for exercise to stay at a lower target exercise heart rate. You might buy a reclining couch instead of a stationary one the next time you replace the furniture in your living room. You might find more ways to do chores and tasks in a seated position. You might decide it's time to give up showering while standing up and purchase a shower bench.

A word of caution: while reclining in the front passenger's seat of a car might sound like a good idea, it's not. It has been associated with serious, paralyzing spinal injuries and even death, which you can read more about in the article Death Nap.

In Summary...

The take-away lesson here is:

• standing is more tiring than sitting
• sitting is more tiring than reclining
• to conserve energy, aim to recline more than you sit and sit more than you stand
• minimize standing as much as possible with cane seats, walkers, scooters and other aids
  
• when you are sitting or reclining, be sure to wiggle, gently stretch or move around every hour or so to keep from getting more stiff and sore
  

Related articles

• Mission 2011: The Most Dangerous Room in the House (ohmyachesandpains.info)
• Mission 2011: Bend Down, Not Over (ohmyachesandpains.info)
• Mission 2011: Getting Into My "Sweet Spot" (ohmyachesandpains.info)

Some Reasonable Advice about Supplements for Fibromyalgia

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Treating fibromyalgia can be frustrating.

When medications and treatments prescribed by your doctor don't provide the relief you are seeking, you may be tempted to try alternative medicine and supplements. Medical insurance doesn't cover many of these options, but perhaps you've convinced yourself that paying out-of-pocket just proves how committed you are to getting better.

Before you jump in head first, I suggest doing your homework.

Let's take, for example, d-ribose made by a company called Corvalen that costs about $50 for a one month supply. D-ribose is a supplement that is being touted as something that can help fibromyalgia-related fatigue. Dr. Jacob Teitelbaum, a big name in fibromyalgia and chronic fatigue, even recommends this product. Only problem: this supplement had not been scientifically tested to determine if it works any better than a sugar pill according to the independent Fibromyalgia Network Treatment and Research News.

Have you heard of Fibroboost® or Fibronol®? Well apparently the company that makes Fibronol wants you to believe that their supplement has been proven in clinical trials. On the Fibronol web page, they provide a link to a Google docs document that looks an awful lot like a scientific journal report. But it doesn't appear to have been published in a peer-review medical journal, which is the gold standard for the medical and scientific community. Once again, the independent Fibromyalgia Network has more to say about this deceptive advertising practice.

Now that I have pointed out some of the problems with finding supplements for the treatment of fibromyalgia symptoms, let me share with you some sound advice.

I trust the Fibromyalgia Network. Why? They don't accept money in the form of advertisements, endorsements or grants from pharmaceutical or supplement companies. This allows them to be independent, objective and honest. They strive to publish up-to-date and relevant information culled from medical journals, conferences and interviews with top medical professionals in the field of fibromyalgia and chronic fatigue. Their organization is supported by membership fees. Membership includes a quarterly journal, monthly enews alerts and a toll-free support line.

For free, you can access their list of potentially helpful supplements. All have been the subject of varying degrees of scientific research, with the top three, magnesium, malic acid and Vitamin B complex, having the most recognized benefits. Best of all, this list of 12 supplements have the potential to give you the most bang for your buck without bankrupting you.

The bottom line: be careful and do your homework. If you are confused or too tired, seek out the help of a trustworthy organization like the Fibromyalgia Network that can help you sift through the clever claims and crazy hype to get to those things that are proven to really help.

Question of the Week: How Do You Plan for Special Events?

Image by anselm23 via Flickr
I'm afraid this is going to be one of my posts where I talk about a good idea that I clearly struggle to implement regularly...

First I should clarify. We all plan for special events, like birthdays, holidays and vacations. Maybe we create a packing list or a menu or go shopping for a present. But when you have chronic illness, planning for special events takes on a whole new dimension, because traveling, shopping, cooking and decorating use a lot of energy.

So now I need to plan for allocating my energy before, during and after a special event. And to be honest, doing anything outside my normal, daily routine is now defined as a special event.

Thankfully the online CFIDS & Fibromyalgia Self-Help group introduced me to a concept that makes planning for special events much easier:



The key to filling out this form is to allocate plenty of time to tasks and adding lots and lots (and lots) of extra rest time.

So, if I had been smart, two weeks before Halloween I would have worked out my costume for handing out candy and run my Halloween related errands. The following week, I would have spread out decorating the house over a long weekend, with rest days scheduled before and after. I would have set up for candy dispensing at least a day in advance and spend most of Halloween resting before and after the main evening event.

I am spending this week staying home and resting to make up for my poor planning over the last couple of weeks. I am skirting the edge of a flare-up and doing everything I can to insert extra self-care activities into this week to prevent one from happening. Let's see if I can avoid one altogether.

Next time, I need to remember this form and complete one in advance to prevent a setback or worsening my symptoms. After all, I'm not going to pass up on fun just because I have chronic illness. I know that if I plan ahead I can do these things with minimized impact on my chronic pain and fatigue.

So do you plan ahead? After reading this post, will you give it a try or give it another try? (You can download this form by going to CFIDS & Fibromyalgia Self-Help.) Please add your feedback to this post or head over to the Oh My Aches and Pains! Facebook page to join the discussion.

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)

Question of the Week: How Do You Manage Sick on Top of Chronic?

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A lot of what I write about is inspired by my day-to-day life with chronic illness. So since I have spent the last 16 hours bellyaching--literally, because of a stomach virus--I thought it was time to talk about how I manage sick on top of chronic. You know, how I deal with the occasional to frequent stomach viruses, colds, influenza and other acute and self-limiting illnesses that everyone gets.

Plan B

While most healthy people seems to be able to soldier on when they get sick, for me catching a cold or stomach bug means implementing Plan B. This includes:

1. Canceling out-of-the-house trips
   
2. Enlisting my support system's help
3. Scheduling tons and tons of extra rest
4. Using a grocery delivery service like Yummy.com to deliver sick day staples
5. Going to, or at least seriously considering, a trip to the doctor
6. Cutting back on my daily activities

Patience

I also know that I am going to have to be patient while I battle a viral illness. In the past, it has taken me up to two weeks to get over a simple common cold. Then I have to anticipate the post-illness flare-up of my fibromyalgia pain and chronic fatigue symptoms. Which means returning to my normal baseline from a common cold can take 4 to 6 weeks total.

Prevention

In light of the major changes a cold or flu brings, I have spent some time research preventive measures that I can take to avoid getting sick. I am diligent about washing my hands and avoiding touching my face with my hands, especially when I am out in public. Certainly spending most of my time at home has cut down on my exposure to viral illnesses. Well, that is until my husband brings something home and gets sick himself...

When I was first diagnosed with diabetes in 1999, I got the pneumonia vaccination. I also used to get an annual flu shot up until 2008, when the shot that year provoked a massive migraine headache. Since then, after talking to my doctor about it, I have decided to skip the flu shot.

One positive change I have noticed is the result of taking a daily Vitamin D supplement after being diagnosed with a low Vitamin D level. I've definitely seen a decrease in the number of viral infections I get since my levels have returned to the normal range. When I do get sick, my symptoms don't seem to last as long. Apparently there is scientific research to back up the cold and flu prevention power of Vitamin D.

So What Do You Do?

I'd love to hear about your sick day Plan B and what prevention measures you take to avoid colds and the flu. Please leave a comment here or head over to the Oh My Aches and Pains Facebook page and join the discussion there.

Question of the Week: How Resilient Are You?

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My husband and I were fortunate enough to scrape together some funds for some sorely needed repairs around the house and backyard recently. Since Robert works, I needed to change my schedule to be available to the handyman when he came to get the work done. Doing this over the past few weeks got me asking myself: How resilient am I?

Unfortunately, I don't think I am as resilient as I want to be.

What kind of rubber band am I?

To use an analogy, think of a rubber band. Your typical rubber band spreads out in all kinds of directions, but when you stop pulling it, it returns to it's pre-stretch shape.

But have you ever stretched a rubber band that had a weak spot in it, like a nick or cut in the elastic? Or stretched an old, brittle rubber band? Then you know that they can't withstand a lot of strain and are liable to break when drawn out to their limit.

I hate to admit this, but my chronic pain and fatigue make me more like that old rubber band.

Being flexible with my schedule only served to prolong my "September fibromyalgia flare-up" that began the week before Labor Day. It proved that my regular daily routine really does keep me in my energy envelope and protects me from flare-ups.

Now that I am all stretched out, I know it's going to take some time to get back into my usual shape. But at least I didn't break!

So how can I stretch further?

A year ago a wrote about about opening an energy savings account. The concept of banking energy every day instead of using up every last drop available to me fueled the idea. Well that and an inspiring quote from Bruce Campbell, PhD. of the CFIDS & FM Self Help Program:

"The unexpended energy is a gift of healing you are giving to your body."

I think banking unexpended energy is the key to building resilience. Now I just have to figure out how to give this present to myself every day.


How resilient are you? What have you tried to build resiliency into your life with chronic illness? Share your thoughts in a comment or head over to the Oh My Aches and Pains! Facebook page to continue the discussion.

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


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Just Questions: Things I Don't Understand

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Welcome to another edition of just questions. Sometimes I find it's the questions that I am pondering that provide the greatest insight into where I am currently. So I guess creating this post is metaphorically akin to opening up my brain and checking out what is rattling around inside.

So here are the questions I am currently pondering:

1. Why do my dogs always want to lick my feet?
2. Why don't people spay and neuter their pets?
3. How come having problems swallowing has to be one of my symptoms of fibromyalgia?
4. How come when I have coughing spells after said swallowing problems, a nerve shock wave travels down my arms, into my hands and causes increased pain, numbness and tingling for several hours afterward?
5. Why is it so bad to use a benzodiazepine every night to help one fall asleep?
   
6. How come my doctors aren't prescribing the same medications that my friends with chronic illnesses are getting?
7. How come I am still wanting a prescription to be the answer to my chronic illness problems?
   
8. Why isn't the Hepatitis C cause getting the funding, support and attention it deserves for things like public education, testing and treatment?
9. Why doesn't the American public know that more people have Hepatitis C than HIV infection?
   
10. Why isn't there a bigger push to get antiviral Hepatitis C drugs out of clinical trials and into the pharmacy faster?

What are some of the questions you find yourself asking lately? Why not share one or more here by leaving a comment?

Wordless Wednesday: World Map of Fibromyalgia & CFS/ME

(click on the map to add yourself)

100 Words: I'm Discombobulated

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Discombobulated: I don't know why I love this word, but I always have and it seems I always will.

Maybe it's because saying, 'My life is discombobulated.' makes me smile at the silliness of this last word.

Plus it sounds so much better than saying:

• Pain and fatigue make me quite muddled.
• My health is a mysterious puzzle.
• My sleep feels quite disturbed.
• My thoughts are all jumbled.
• All my plans have been undone.
• My ambitions appear frustrated.

Yes, when life leaves me befuddled and bewildered, it's much more fun to say 'I'm discombobulated.'


Do you have a favorite word or phrase you use to describe your state of being, especially when things aren't quite going the way you wish they would? Share it with me and your fellow OMA&P! readers...

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...

Saving Them Up For Summer

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I've hit a rough patch lately when it comes to my health. I didn't seem to have many viral illnesses over the winter months, which is somewhat unusual for me. Not that I am complaining, mind you. That said, it appears that all those viruses have been following me and have finally caught up to me now.

A few weeks back I had a horrible stomach virus. Since last Thursday, I've followed that up with a rip roaring upper respiratory infection.

After running fevers for the last three days, I reluctantly headed to Urgent Care Sunday to get checked out. After examining me and sending me for a chest x-ray, they decided that I had influenza. They pumped me up with some fluids and gave me some Tylenol on top of the ibuprofen I took for my fever and sent me on my way with a prescription for Tamiflu.

To be honest, I'm not sure I have the flu. Since I got back from the doctor's, I've been feeling better and so far no fever. I filled the prescription, but I suspect I have missed the critical 48 hour window to start taking it, so I am going to pass. I guess it's good to have it on hand in case I get the flu in the next 18 months.

What has me more worried is the trend I am experiencing of catching viral illnesses in the summer. Since 2007, I seem to be catching a cold every August. This year, it's been two viral illnesses in July. I always though summertime was my reprieve from getting sick, which is one of many reasons summer is my favorite time of year. But that seems to be changing...

Is this something other people have been noticing too? Or this is another associated condition with fibromyalgia and chronic fatigue syndrome?

Either way, I wish this trend would stop because I have a garden full of vegetables that need tending and I'll be damned if I am going to let all my hard work wither under the hot sun!

Saving Myself Through Helping Others

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If I hadn't had cancer, I don't know if I would have chosen a career in social work. In fact, growing up I really wanted to be a doctor. But because I had some fun as an undergraduate in college and my GPA reflected it, I wasn't convinced that I could get into medical school with a B average. So I looked into pharmacy and a few other allied health professions...

...then I was diagnosed with leukemia and all my plans got scuttled like a damaged and sinking battleship.

When I was in remission and back in college classes, I knew medicine or any similar career wouldn't really work for me. So I focused on my true intent, helping other people. I recalled my experiences talking with social workers during and after my cancer treatment and how helpful they were in bolstering my coping skills and garnering resources to address my needs. I came to the conclusion that a graduate program in social work would fit the bill nicely.

As a clinical social worker for 11 years, I got to help lot of people, often in medical settings. At the beginning of my career, I worked with people with HIV and AIDS, undeterred by the death and dying that was a part of the illness before the introduction of antiviral medications in 1995. After all, I had almost died from cancer and had cancer treatment friends who had died. Those experiences taught me how important it was to just be there for someone else, especially when everyone else is scared, turning their backs on you and walking away.

I strove to always be professional and put the interests of my clients before my own. That said, I admit that I learned an awful lot about myself in the process of helping other people. Self-discovery is an inevitable part of using yourself as an instrument of change, support and coping. But to make sure my professional and personal didn't get all mixed up, I was deliberate and careful in choosing not to work professionally with cancer patients, because I wanted to gain some perspective and distance before working in an area so close to my own experiences.

It's ironic that just when I felt like my cancer experience was behind me and I could work in oncology social work, a trip-and-fall on top of my cancer treatment late and long term effects disabled me and took me back to square one.

I am grateful for the time I did get to spend on my social work career. Unfortunately, chronic pain, chronic fatigue and sleep disorders negatively impact my attention span, cognitive abilities and communication skills necessary to be a competent social worker. Simply put, I lack the capacity to engage in this profession at this time. Yet I do so miss it.

So it seems that I have come full circle, back to being an ill person interacting with other ill people once again. And I am happy for the opportunities to be there for my peers. Now I offer little, tiny bits of support to others through my participation in chronic illness communities online and through social media. I have found friends on blogs, Facebook and Twitter and through these interactions I honestly feel connected to other people again.

Always conscientious, I am careful not to present myself as a social worker, because I am not one now. I don't present myself as an expert either because I just don't possess the attention to detail and command of the facts that I think an expert should have. I am more accurately described as a patient blogger, patient expert and a chronic illness or cancer survivorship advocate today. I am really too tired, too fatigued and in too much pain to be able to be much more than that.

I think my new goal is to become a something of a mentor, supporter and the blogging equivalent of an advice columnist to other people living with chronic, invisible illnesses and long-term cancer survivors. Yup, that's the new me: I'm sharing, caring and baring my soul to help others live their best lives despite chronic illness. Sounds like a new tag line for my blog...

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A Plan to Save the Day

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I probably should mention that the monthly blogging theme for July for NaBloPoMo is SAVE. It's been a while since I blogged on a theme, but judging from this week SAVE is an apropos theme for me. I don't know if I have 20 some odd posts that will fit the theme or not, but it's always fun to just write and see what happens.

I find being disabled is practically synonymous with filling out forms, lots and lots of government forms. Inevitably, I feel like I have to prove (over and over again) that yes, I am disabled. More than once I have encountered a question that asks me something like this:

Please describe your typical day, including the activities you engage in and self-care behaviors.

So when faced with this question once again, I decided I needed to write a bit of prose that definitively answered the question, once and for all. Here is my answer:

Every day starts with figuring out how much energy I can expend. I usually have about 2 to 4 hours worth of energy on a good day.

Every activity needs to be broken down into smaller pieces -- 15 minutes at a time, followed by a rest break.

I constantly monitor my pain and fatigue level during the day and sometimes need to put activities off if my symptoms increase.

Every day, I plan to spend 15-30 minutes on chores/housework, 15 minutes on pet care, 30-45 minutes on meal preparation, 25 minutes walking my dog using my mobility scooter, up to 30 minutes on e-mail or phone calls to family & friends, 15 minutes taking a daily 1 to 2 block walk, 15-45 minutes on hobbies and 15-30 minutes on writing.

If I plan to leave the house, which I can do 2 to 3 times a week, I adjust my activities accordingly and include more rest time before and afterwards.

The rest of my awake time is spent in a reclined position watching TV, spending time with my spouse and pets, reading, listening to music or watching DVDs.

Upon reflection, I think this is a pretty solid answer and somewhat akin to my own personal story about spoons or marbles or what ever other currency you image your energy takes. In fact, I think I might have transcended answering a mundane question and arrived at a real, honest-to-goodness personal plan to save my day. And yes, for the most part, I really do follow this plan, mostly because it is the only way I have found to prevent major setbacks from and flare-ups of my fibromyalgia and other pain and fatigue inducing conditions.


What is your plan to save your day? I'd love to hear what you do to manage the limited energy you have each day.