Love -- In Sickness, not Health

Happy Valentine's Day!  I can't think of a better day to talk about how chronic illness affects my most important relationship: the one with my hubby of over 15 years.

Robert and I met when I was a freshman at UCLA in 1984.  He and I were friends in 1988 when I was diagnosed with leukemia.  While he didn't see much of my day-to-day struggle with month-long hospitalizations and chemotherapy treatments, he also didn't vanish like some of my other friends and family members did.

In 1990, when he first told me he loved me and wanted to go out with me, I freaked out.  Between getting dumped by a boyfriend one month into cancer treatment and trying to cope with the changes life after cancer brought me, I wasn't ready to start dating yet.  So I politely told him no.

Luckily for both of us, I changed my mind 5 years later when we reconnected and rekindled our friendship.

Today, looking back on our 15 years of marriage, I've just realized that I've been living with chronic illnesses severe enough to make me unable to work for almost 10 years now.  So 2/3 of our marriage has been with my sickness, not health.

I told Robert when we started talking about marriage that there was a *possibility* that my health could get worse. We both knew I had chronic Hepatitis C infection, yet ironically, that's not what has disabled me for the last 10 years.

And not even a year into our marriage, I was faced with a new health concern.  I was diagnosed with type 2 diabetes, which isn't causing me any serious problems at the moment, but does require a lot of effort on my part to manage it with diet, exercise, medications and follow-up medical care.

No, the big change happened in 2004 when a trip-and-fall accident started my journey with the constant, severe pain and debilitating fatigue of fibromyalgia.  That accident also worsened a pre-existing, but not yet diagnosed, condition that had been around since the end of my cancer treatment -- dysautonomia.  I've also developed new health problems, like sleep apnea, which is associated with fibromyalgia. Honestly, chronic pain makes all my other health problems worse, in various degrees, and makes managing them all more challenging too.

The other day I read a poster that said, "It's true that pain changes people. Not everyone knows this, not everyone sees this truth. Pain makes you let go of things you'd rather be doing. Sometimes it's OK that the only thing you did today was breathe. Pain changes you.  But it can also make you stronger."  Well, Robert's had an up close and intimate view of all the ways that pain has changed me...and he's seen a lot of unpleasant, undesirable and uncomfortable things in the last 10 years. 

Let me be frank and to the point.  I'm less frequently my cheerful self when my pain, fatigue and sleep-deprivation are at high levels.  I need more help now and Robert is the one around who can help me.  As much as I plan, pace, schedule, restructure activities and rest, my ability to participate in life's activities, from mundane daily chores to fun special events, is highly unpredictable.  No wonder my hubby gets irritated with me, or rather my chronic illnesses, sometimes.

My chronic illnesses don't just effect me physically; chronic illness affects my concentration and memory too.  Brain fog makes me forgetful, even when he just told me what he needed me to do.  Try asking for help when all of a sudden you can't remember the word for the object you need your spouse to bring to you!

If I fall apart, physically, mentally or emotionally, it is Robert who is usually there to witness it.  If I have a bad day, it impacts him the most.  If I am in a really bad mood, he's most likely to caught up in it.  If I can't do something, he's the one that will have to do it instead.

Yes, we have avoided being part of the statistic that shows 75% of marriages in which one spouse has chronic illness end in divorce.  But no, our marriage hasn't always been easy.  Ask Robert and he'll tell you we've had more than our fair share of bumps (or mountains!) in the road. 

How have we done it? I think being friends for 14 years first and then dating, getting engaged and married helps.

I try to always be polite when asking for his help and grateful for the things Robert does for me. I try to tell him thank you frequently.  I've learned to take a "time out" and retreat from his presence if I am really out-of-sorts.  And I take the time to explain what is going on with me, often multiple times, until he really seems to understand.

Between explanations and witnessing my behavior over the last 10 years, I think he now really knows what is up with me -- sometimes better than I do!

One thing I've needed in the past several years is his help driving me to doctors' appointments.  I have to say going to my appointments and being in the examination room with me has really been an education for him!  He is now very annoyed that all the medical doctors and all the medical specialists can't put his wife back together again.

Finally, one thing that is both endearing and frustrating to me is his insistence that I do as much as I can myself.  His urging is a good reminder that there are activities and better days when I can still do things without his help.  Of course, when I need his help and he can't see that, it's quite frustrating.  But I think it shows that he hasn't given up hope that one day I'll be the Selena he fell in love with again. 

I hope some day I can get better too, for myself and for him, because living and loving with chronic illness makes it hard for both of us.

Arriving at the End of My Hepatitis C Treatment Journey

As I am publishing this post, I am in the car headed to the lab to get blood drawn for my week 24, end of Hepatitis C treatment, viral load.

Robert will be driving. I will sitting in the back seat of the car. That's because the interferon I have been taking for the last 24 weeks has made me so sensitive to sun I absolutely need the darker tint on the back windows to keep me safe. It will be the hottest day yet this year today here in Los Angeles and the sun and heat are not my friends right now.

Because I am so wiped out from treatment, this trip will be more like an jungle expedition, complete with white knuckle moments when short stops, crazy drivers hurtling towards us and the occasional obscenity uttered by my husband in response to the road conditions will rattle my nerves. I will have to reassure myself over and over again that I can get through this and get back home, safe, sound and in one piece.

My heart will be pounding. I will be dizzy. I'll need to take my time moving from sitting to standing and vice versa. You see, my dysautonomia has been worse from the treatment-related anemia since week 2 and it is probably going to take up to 60 days for the anemia to get better, *fingers-crossed.*

When I get to the UCLA Medical Center, I'll be using my rollator, a.k.a rolling walker, to get the short distance from the car to the lab and back. I need to rely on it because of my fatigue and dizziness. It also doubles as a purse carrier, which is a good thing since my purse feels like it weighs 2 tons right now. My rollator also gives me a place to sit while I wait in line at the lab counter to turn in my lab slip. After the blood draw, it helps keep me on my feet when the post blood-letting wooziness hits as I make my way back to the car.

It's never a dull moment when you live with chronic illness!

Yes I'm battered from this treatment. Some days I am barely functional. But I knew going into this with multiple chronic illnesses in addition to Hepatitis C that treatment could take a huge toll on me and greatly reduce my level of function.

How beat up am I? Let me quantify it using the CFIDS/FM Self Help rating scale. On the scale, one hundred is normal functioning with no symptoms and zero is bedridden and unable to care for myself. I am a solid 10 right now. Before treatment I was a 30 and boy do I miss being there.

So why did I embark on this trek? Because Hepatitis C was the only chronic condition I was living with that could be potentially cured. And since chronic Hepatitis C infection is associated with  arthritis, fatigue, fibromyalgia, insulin resistance, type 2 diabetes and peripheral neuropathy, all conditions I have been diagnosed with, it just made sense to try and take it out of the mix as soon as possible.

Now that I have arrived at my destination, the end of my treatment, I just have to wait and see where I have landed. Only time will tell if I have slayed the dragon Hepatitis C and if its absence makes a difference in my health and my quality of life.

That said, I think this 168 day battle was still worth it, even if I don't achieve a SVR (sustained virological response.) That's research talk for the absence of Hepatitis C RNA in my blood 6 months after treatment ends. Even if the virus comes back, at the very least, treatment should reset the clock on my chronic infection, dialing it back down so my inflammation, viral activity and any liver damage gets better in the short run. That's time I'll need if I have to wait for newer antiviral drugs currently in the Hepatitis C research pipeline that are crawling towards FDA approval.

As with every trip you take, there are bound to be some bumps and potholes in the road. As you know, my treatment has run into its fair share of them, from severe anemia by week 4, the discovery at week 20 that my hepatology team failed to get a week 4 viral load needed to determine my treatment length and, of course, lots and lots of side effects throughout the last 24 weeks.

As I move on and leave these troubles behind me, my greatest disappointment looking back is not getting to do my treatment the right way; that is, per the treatment protocol. When I started treatment, I was physically, mentally and emotionally prepared to give this 100%. And I was as close as humanly possible to perfect as I could! I took my pills on time, up to three times a day, for 168 days. I gave myself 24 weekly injections of interferon. My husband took me to so many lab and clinic appointments in the past 24 weeks that I have simply lost count.

At the start, I didn't think my expectations that my hepatology team would closely follow the treatment protocol were unreasonable. But now that I am at the finish line, arriving labeled as a "difficult patient" by the UCLA Health System, I can clearly see the disparity in the level of commitment between them and myself.

After the discovery of my missing week 4 viral load, my gut wanted to go conservative. So I advocated for extending my treatment from 24 to 48 weeks. But I was quickly and summarily overruled by my doctor. I'm still not happy there is an extra element of risk that has been added to my Hepatitis C treatment, that what I wanted wasn't considered when my doctor made his treatment plan.  But it is what it is and now it can't be changed.

Today I know my determination and complete commitment to my Hepatitis C treatment is what got me here to the finish line. It helped me get over the bumps, out of the potholes and through the rough patches.

There were times though when I wasn't always strong enough by myself.  In those moments when I was faltering, it was you and your abundant support that lifted me up and carried me forward.

In this age of social media, I invited my family, friends and supporters on Twitter, Facebook and here at my blog to go on this odyssey with me.  Your response was simply amazing. All of you, reach out to me through the Internet, brilliantly made up for the lack of support from my hepatology team. I don't know where I would be today without you.

When I am feeling recovered, I plan to pay it forward, to repay you as best I can and be there for you when you need someone the most. I also have an end-of-treatment party to plan and throw for you all, complete with a giveaway raffle! Yes, it's time for a great big celebration of what I was able to accomplish with your help.

So here I am, Day One post-treatment.  In the next 24 weeks I will learn where treatment has brought me.  In the meantime I continue to be grateful for your company on this last leg of my journey.  Let's all think lots of wonderful healing thoughts for each other today and pray my days living with Hepatitis C have come to an end.

Update: Where I Am at in My Hepatitis C Treatment

It's me and my new, shorter 'do
to camouflage my thinning hair.

Thanks to all of you for your recent inquiries here on my blog asking how I am doing with my Hepatitis C treatment.

My huge lack of energy explains my absence from Oh My Aches and Pains! Since April I've been publishing shorter updates to Twitter and the Oh My Aches and Pains Facebook page out of necessity. Both are public and don't require you to join to view what I share there.

I am currently in week 23 of treatment and I am scheduled to end my treatment on August 9, 2012. Since week 7 of treatment my viral load has been undetectable, so it does appear that I am responding to this triple antiviral treatment. Yippee for me!

Now I won't know for sure if this treatment has been a success until 6 months after I complete it, which will be in February 2013. The first step is a viral load which I will have drawn at week 24 on August 10th. Post-treatment, a good predictor of success will be the viral load I will have drawn at 3 months post-treatment, which will be in November 2012.

 I plan to keep you posted by continuing to share my lab results over on the Oh My Aches and Pains! Facebook page.

As you might recall when I began this journey back in February, my goal was to get rid of my chronic Hep C infection, the only chronic condition that I could potentially "cure." I was 100% committed to taking all my medications on time and as prescribed and was ready to endure up to 48 weeks of this treatment if needed. I got mentally prepared to go all out and hardcore for this and I've had my "Fight Like a Girl" face on this whole time!

I went into this treatment knowing that I might have to deal with lots of side-effects. And as it turns out, women tend to have more side-effect on Hepatitis C treatment. Women also have better treatment success, so for me this was an acceptable trade-off.

To date, my most serious side effect has been anemia. I have been anemic since week 2 of treatment. My hemoglobin dropped from 13.6 to 7.8 at week 4 of treatment, which almost caused me to be taken off treatment. I required a ribavirin dose reduction and a blood transfusion to get past that bump in the road. Since about week 6, hemoglobin bounced back up into the 9.0 range and is currently at 10.1.

It is this anemia that has stolen away a lot of my energy and made it difficult to keep up with my blogging.

As predicted by my neurologist at the Mayo Clinic, the anemia has also made my dysautonomia symptoms worse as well. Those include tachycardia, dizziness, heat intolerance and post-exertional fatigue. He added the drug Florinef to the mix at the beginning of my treatment to help pump up my blood volume to counteract the decrease in red blood cells.  It has made a difference. I can still move around the house and get out to doctor's appointments; I'm not bed-ridden like the last time I tried treatment.

Another concerning side effect was the mild retinopathy aka eye damage I developed by the time I got to week 8. This side effect is not uncommon during Hepatitis C treatment and is related to the use of pegylated interferon as part of my treatment cocktail. The absolutely good news is that this side effect almost completely resolved at my last eye exam at week 20.

For the last eleven weeks I've also been dealing with and managing:

1. chronic diarrhea requiring major changes to my diet to manage it
2. a very sore bottom from #1
3. higher blood sugar numbers and a switch to using insulin
4. loss of appetite and a 10 pound weight loss (that's OK with me)
5. dry mouth and mouth sores
6. a chronic cough causing by lots of post-nasal drip
7. the worst fatigue ever (hello recliner)
8. lots shortness of breath and more tachycardia
9. more problems with insomnia
10. major dizziness, complete with ringing in my ears
11. severe sun sensitivity (I have to sit in the back seat of the car now)
12. a couple of near fainting episodes when I pushed myself too hard (my bad)
13. hair thinning (I know, just cosmetic and it should grow back...)

During treatment I have been completely reliant upon my wonderful husband Robert to do just about everything for me. It has been tough on him, but he is a real trooper and has reluctantly risen to the challenge. My treatment has been a huge stress on our marriage too, but I am happy to report that we have found a way to get through this together and our marriage will be stronger when my treatment is over.

He really deserves a treat and I'd love to hear your ideas on what kind of gift I should get Robert to show my appreciation when this ordeal is over...

Now my treatment has not been without some controversy.  I'd love to continue writing and tell you about  the mistake I uncovered two weeks ago, but I have run out of gas and need to stop here for today. If you have been following my updates on Facebook and Twitter, you already know bits and pieces of what has been happening. I do promise to post again later this week to fill you in on what happened over the last two weeks and how I got my treatment back on track.

Until then, be as well as possible--as my friend Jenni, the ChronicBabe, is fond of saying.

Wow!  I'm in the home stretch!

I've got 11 days of Hepatitis C treatment left.

Can you cheer me on to the finish line?

Learn how you can support me here.

Health Care Professionals Can Be Idiots Too

Health care professionals can be idiots too.  There, I said it. 

Yup, they can be just as stupid, ignorant and clueless as the rest of us...only their mistakes and missteps can have life-altering, and sometimes life-ending, results.  Based on this alone, I want to hold them to a higher standard. 

Only I am quickly learning that what I want to do and what I need to do are two completely different things...

No Respect for My Pre-Existing Conditions

Truth is, I don't want to have to be writing this post and letting you know that things are not going smoothly for me.  I don't want to discourage anyone living with Hepatitis C from considering their options and proceeding with treatment if that is in their best interest.

But I have a BIG problem and it is not going away.  So I need to deal with it.

My problem is that I live with multiple chronic illnesses, including diabetes, fibromyalgia, chronic pain, cancer treatment late effects and, the biggest complication of all, dysautonomia.  I have repeated these diagnoses ad nauseam--over, and over, and over--to my Hepatitis C treatment team.  They nod, they write them down, but at the end of the day they just don't get it.  They don't get that my pre-existing medical conditions are affecting my Hepatitis C treatment experience.

Won't Talk to My Other Doctors

I was warned before the start of Hep C treatment by my neurologist that ANY treatment-related anemia would make my dysautonomia symptoms worse.  At the start of treatment, when I share with the hepatologist and hepatology nurse that the neurologist prescribed Florinef, an oral steroid medication, to treat any increase in my dysautonomia symptoms, they said I could not take oral steroids during treatment.  At week two, I asked my hepatologist to call and consult with my neurologist regarding my dysautonomia because, sure enough, treatment-related anemia was making my dysautonomia symptoms much, much worse.  Shortly after my request, the hepatologist agreed I could take the Florinef.

Silly me, I thought the reversal in the hepatologist's stance was because the two doctors finally talked.  That was until I talked to the hepatology nurse a few weeks later, who commented, "I thought the Florinef was preventing anemia by saving red blood cells."  "Uh, no," I replied, "It helps my body retain salt which increases my blood volume and makes up for the loss in blood volume due to anemia."

Playing Pass the Buck

I'm also not sure why, but when I started Hepatitis C treatment, I wasn't given a consent form for treatment that listed all the goals, procedures and side effects of treatment.

That was unfortunate for me, because it meant I had no idea how my hepatology treatment team was going to handle things like anemia, low white blood cells counts, side-effects, etc.  So when things have come up--and it seems like every week something new does come up--I spent a lot of time and energy bringing my concerns to the hepatology team's attention.

From there, sometime they handle the problem and sometimes they delegate it to someone else.  Either way, it always means a lot of work for me: making phone calls, making appointments, going to doctor's visits, going to the pharmacy, asking for follow-up lab slips, asking for lab results, etc.

Sadly, when they decide to "delegate" my care, it has the flavor of dumping me onto another medical service that might or might not be able to help me.

For example, hepatology tried to delegate my blood transfusion arrangements to my primary care doctor.  Only I found out my doctor was out-of-town at the time and the doctor covering for her informed me that the Family Health Clinic didn't have a way to expedite a request for an outpatient blood transfusion.  So I had to call the hepatology nurse back, let her know my primary care doc was out of town and that hepatology needed to make the blood transfusion arrangements.  The end result?  I got sent to the Emergency Room instead of the outpatient cancer center (where it turns out I would have gotten better patient care.)

The Laissez Faire Approach

I have been pushing hard to have my blood counts monitored on a weekly basis while they have been in flux.  After all, I figured if the hepatology staff had the numbers in front of them, they could be proactive in treating these side-effects.  Especially since I told them that anemia would make my dysautonomia worse...

Boy, was I wrong.

On top of that, I have to listen to the hepatology nurse constantly telling me I don't need to have my labs drawn every week.  My best guess at what that really means?  She is too busy/absent-minded/lazy to be checking my labs on a weekly basis and following up with the doctor when action is needed.

I don't agree with her.  So I ask for a lab slip and then call her weekly to ask her to check my results. 

My latest dilemma?  I just had labs drawn Tuesday, April 10th.  Based on those labs, my hemoglobin has once again dropped, from 9.8 to 9.1, in 7 days.  (The critical level is 8.5.)  But the hepatology nurse made it a point to tell me she doesn't think I need to go back to the lab this weekend and have another level drawn before my doctor's appointment on April 17th.  No, instead, if I did things her way, I would talk to the hepatologist about further side-effect management decisions, like a ribavirin dose reduction, blood transfusion or start of erythropoietin therapy, based on week-old hemoglobin results.

Of course that left me asking myself How does this make any sense?!?

Today I sent out an email to my primary care doc asking her to fax me a lab slip so I can get the level rechecked closer to my upcoming Tuesday appointment.  That way, I can get the hepatologist and his nurse practitioner to make any necessary arrangement during my clinic appointment for a blood transfusion or a prescription for erythropoietin based on real-time lab results.

I am happy to report got the lab slip a few hours later and I am good to go back to the lab this weekend.

I'm One Frustrated Patient

I am so frustrated about this ongoing situation.  I would LOVE to transfer my care to another hepatology nurse, only there isn't another one in the practice.  So all I can do is deal with my anger in productive ways by being the best damn patient advocate for myself that I can be.   Because, well, my life really does depend on it right now.

I can also list all the things that really irk me about my current hepatology health care providers.  Maybe you can relate to this list too.  After all, can you really trust health care providers who:

• don't listen to their patients or ask them questions
• don't look up information on the conditions their patients' have
• don't read up on the medications their patients take
• don't or won't take responsibility for their patients' care and well-being
• don't or won't work with other health care providers as a team
• don't communicate with patients by email
• won't be proactive about the management of their patients health problems

That said, rest assured I am not going to let my Hepatitis C treatment providers injure or kill me. No way, no how--it's not going to happen. That's because I have a health care team that I can fall back on and ask for their help when I don't agree with how my Hepatitis C treatment is being managed.

Yes, today I am thankful I have other health professionals I can rely on for my care.  In particular, thank goodness for my primary care doctor! I think I am going to owe her a huge debt of gratitude when all is said and done.  What do you think?  Should get her a present?  If so, what should I get her?

Still hanging in there and taking it day by day...even on Friday the 13th!

Wow, could I really use your support!
I've got 120 days of Hepatitis C left
and sometimes that seems like such a long time...  

Learn how you can support me here.

Related articles

• The First Bump In the Road of My Hep C Treatment (ohmyachesandpains.info)
• Getting Through the Hard Part of Hepatitis C Treatment (ohmyachesandpains.info)
• My Hep C Treatment: A Pit Stop at the Emergency Room (ohmyachesandpains.info)

My Discovery For Getting Fit with Dysautonomia & Fibromyalgia: Seated Exercise Videos

Discover Exercise from a Seated Position

After years of struggling with exercise since becoming a ChronicBabe, suddenly everything clicked when I recently read a statement on a fellow POTSie's blog that said (and I'm paraphrasing here) "When you have dysautonomia, all your exercise should be done in the seated position." 

What a Well, no duh, why didn't I think of that? moment!  After all, I learned last year at the Mayo Clinic in AZ that when I am standing still, my blood pressure goes all over the place, bouncing from high to low and back again. I can only imagine what happens when I try adding movement to standing...

Since this discovery, I've decided to make incorporating seated exercise into my weekly routine one of my goals for 2012.  So I went to YouTube looking for some simple seated exercise videos that could get me started.  What I found is a variety of videos that range from easy and beginner to experienced and challenging.

My Top Four Picks

My doctor advised me to start with just a few minutes of exercise three times a week and slowly work up to more.  So I'm starting with this fun and energetic seated dance video set to Hawaiian music which utilizes a technique called the MUVE method:





I've heard that Zumba is the latest fitness craze and I have been feeling a little left out since an hour dance exercise class is so not practical for me.  So imagine my delight when I found this Zumba Gold chair routine that I can do from the comfort of my home.





I'm loving Coach Nicole from SparkPeople.com and her calorie burning Seated Cardio Workout.  This is definitely a more advanced workout that I am aspiring to when my fitness level improves.  She's also recorded a Seated Upper Body Toning Workout and a Seated Abs Workout too.





Jackie Tally, another new favorite, has several different seated exercise videos on her Smart Moves YouTube channel.  My absolute favorite is a routine she set to the song Chicken Fat, a song I remember fondly from my childhood (I am not able to embed it here, so you'll have to head to YouTube to see it.)  It seems like a fun way to start the day with exercise!





Honorable Mentions

Mike volunteers with patients living with multiple sclerosis (MS), teaching a seated exercise class in a local hospital.  Skip the first minute or so of these videos to get right to the easy five minute seated exercise routines that he teaches to his clients.  Then check out the last link for more information about his Move with Mike class.

Seated Exercise Program 1
Seated Exercise Program 2
Move with Mike - Seated MS Exercise Program

I love yoga.  Unfortunately, my body with fibromyalgia and chronic myofascial pain doesn't find traditional yoga very relaxing or helpful anymore.  That is, until I discovered two seated yoga videos that just work better for me in my current state of health.


Chair Yoga
Chair Yoga Refresher


A Tip for Watching These Videos Anytime

Love these videos, but wish you didn't have to go to YouTube to watch them?  Guess what?  I discovered that RealPlayer lets you download videos from YouTube to your computer and covert them into several different formats, including MP4, WMV and RealVideo.  You can also burn them free of charge to a video CD using the free version of RealPlayer.  If you upgrade to RealPlayer Plus, you can burn these videos to DVD.


DISCLAIMER:  This post is intended to convey general health information and is not a substitute for professional medical advice. Please consult your health care provider before beginning any exercise program.

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.

Question of the Week: Are You Getting Ready for Summer?

Image by flavijus via Flickr Here in the USA, we just finished celebrating Memorial Day, which is considered the unofficial start of summer here, even though the summer solstice isn't until June 20th.

Robert and I spent part of our holiday weekend putting together our new barbeque, bought to replace the 10 year old one that was falling apart in the backyard and truly beyond repair. Warmer weather for us means switching from cooking inside to grilling outside, so we will be putting our new grill to a lot of good use over the next few months. Some of our favorite dishes are boneless, skinless chicken breasts, turkey burgers and vegetable kabobs.

I've also been trying to get my container vegetable garden together, though this has suffered as I have been distracted by a bunch of other stuff that needed my attention more urgently. So this year I resorted to buying seedlings from the hardware store rather than starting my garden from seeds. Time will tell if this method yields a different (better?) result.

Unfortunately, this time of year means warmer weather. My dysautonomia impairs my ability to sweat properly, which makes me more vulnerable to heat-related problems. That translates into using the air conditioning more and retreating inside the house during the hottest parts of the day.

Ironically, many indoor venues like stores and businesses don't keep their thermostats turn down low anymore during summer, so I often find myself walking out and heading home if it's too hot inside my destination. I don't know if this is a strategy to conserve energy or save money, but either way it's making it harder for me to cope with hot weather.

With so much of my attention focused on summer, I'm wondering if your thoughts have strayed the same way. Do you do things differently this time of year too? Are you planning any vacations or other special events? Do the summer months bring new challenges that require changes to your chronic illness self-management strategies?

Share your response in a comment or over on the Oh My Aches and Pains! Facebook page.

My Mayo Clinic Adventure - Getting Answers on Day 4

Day Four - Thursday, March 17

8:00 a.m.: It's another early appointment, but instead of tests, today I get some answers. So after a quick breakfast at the hotel, the first one I've been able to eat with Robert in three days, we are back in the car heading down Shea Blvd., bathed in the early morning sunlight. On the drive over we talk about the progress the road construction crew has been making over the past four days resurfacing this busy street.

With the same efficiency that was the hallmark of my first appointment on Monday, the check-in process is a breeze and the wait time minimal. We find ourselves once again sitting on the couch in the examination room for just a few minutes before Dr. Goodman walks in and joins us.

As Dr. Goodman begins to speak I focus all my attention on him and try to absorb each and every word he says. A few minutes in, I suddenly realize that I should be taking notes. I glanced over at Robert and see him typing away on the keyboard of his Blackberry smartphone. Sure enough, he seems to have read my mind and has been taking notes for me.

In that moment, my gratitude towards him grew exponentially.

Based on my recollections and his detailed notes, here's a summary of Dr. Goodman's preliminary findings:

• Based on the autonomic testing, my diagnosis is orthostatic intolerance (also called postural orthostatic tachycardia syndrome or POTS.)

Based on the EMG and nerve conduction study, as well as comparing the current results to my previous study at UCLA in 2005, it is clear that my carpal tunnel syndrome has gotten progressively worse and his recommendation is for surgery to decompress the median nerve.

Because of my complicated medical history, he is unable to discern the cause of my orthostatic intolerance. He is also concerned that, unlike most patients with orthostatic intolerance, the condition will not get better over time and with age.

He expressed his disappointment that I was unable to get a consultation appointment with the Mayo Clinic Hepatology Department and encouraged me to keep my appointment with my hepatologist at UCLA in June. He remains concerned that my chronic hepatitis C infection is playing a role in my orthostatic intolerance.

Based on the EMG and nerve conduction study, there is no evidence of diabetic neuropathy, which means my efforts to tightly control my blood sugar have paid off.

Next he moved on to his treatment recommendations:

• He changed the beta-blocker that I have been taking to another one in a different class. He feels this alternate beta-blocker will better address my symptoms of tachycardia and blood pressure fluctuations.

Because my blood pressure during the autonomic testing bounced between the hypertensive, normal and hypotensive ranges, he wants me to keep my salt intake in the moderate range, at about 4 g per day.

He also suggested that I drink 2 1/2 liters of water a day, but went on to say that some of that daily intake should be an electrolyte enhanced beverage.

In addition to the new beta-blocker, he also prescribed a medication called Mestinon which he felt would help my symptoms of fatigue and heat intolerance.

He remarked that my allergy medication and my prescription sleep medication can both impair my sweating response.

He recommended I elevate the head of our bed six to 8 inches.

As I mentioned earlier this week, he provided me with detailed instructions on incorporating exercise into myself self-care plan and gave me a patient education handout entitled Exercises to Help Manage Orthostatic Hypotension. (I will try my best to include a copy of this document in my Thursday Mission 2011 post.)

Together we decided that it would be best for me to return to see him on an annual basis so I could take advantage of any new treatment options or advancements that might occur over time.

At the end of our time together, he let me know that he did not have the results of my blood tests nor did he have the results of the Holter monitor--which I was still wearing at the time. He let me know that he would be calling me towards the middle of the next week to give me the results of these tests. If I didn't hear from him by Wednesday, I was to call him.

As Robert and I headed out of the examination room and back to the waiting room, I once again asked him, "So what do you think?" This led to a long conversation that began in the waiting room and continued as we went down the elevator, to and from the pharmacy and back to our car. In the process, Robert and I reviewed all the information Dr. Goodman provided me as well as his treatment recommendations.

We both felt that this trip to the Mayo Clinic Arizona was well worth our time, as it provided new information about and new treatment options for my dysautonomia. We both felt reassured that being connected to a real expert in this area meant that I would be getting better care for this condition. We decided it would be worth our time and effort to come back every year to see Dr. Goodman.

After this appointment, we headed back to the hotel to rest and have lunch. Then headed out in search of some some cactus candy to bring back home with us.

3:30 p.m.: We returned back to the cardiology clinic to drop off the Holter monitor that I have been wearing for the past 24 hours. The technician had shown me how to remove the electrodes on my own, so all I had to do was place the device in the bag she gave me and hand it to the receptionist at check-in. We then headed to the pharmacy to pick up my two prescriptions and discuss with them how to go about transferring these prescriptions to my local pharmacy.

With the completion of these two tasks, my time at the Mayo Clinic Arizona came to an end. But in terms of my dysautonomia-related medical care, this is just the beginning. Over the next few months I will learn how this experience will affect the quality of my life with dysautonomia and my other chronic illnesses. And, of course, I will be sharing those results here with you.

Related articles

• My Mayo Clinic Adventure - Day One (ohmyachesandpains.info)
• My Mayo Clinic Adventure - Autonomic Testing on Day 2 (ohmyachesandpains.info)
• My Mayo Clinic Adventure - A Very Busy Day 3 (ohmyachesandpains.info)

My Mayo Clinic Adventure - A Very Busy Day 3

Welcome back to my third installment of my Mayo Clinic adventure.

I'm recounting the events that took place on my third day in Scottsdale, Arizona. This was a very busy day. This is also the day that the thermometer hit 90°, so I was glad to be spending most of my day inside an air-conditioned building.

Day Three - Wednesday, March 16

10:30 a.m.: Thankfully this busy day had a later starting time. However, with fasting blood tests scheduled for this morning, I arrived at the clinic hungry, having not eaten anything since dinner Tuesday evening. Being a type 2 diabetic, I've learned to have a contingency plan for these types of situations and so I packed a juice box and a piece of string cheese into my backpack to eat after the blood work was completed.

The instructions on my itinerary let me know that I would be going for a plasma catecholamine test which measures hormones that are produced by the adrenal glands. These hormones can affect blood pressure, heart rate and other organs as well. The procedure which took place in a lab area on the second floor entailed the insertion of an IV port into my arm. Several tubes of blood were filled from the IV port for some routine blood work. Then I was asked to lay down quietly on a bed in a darkened room to rest for 30 minutes. At the 30 minute mark, another blood sample was taken and then I was asked to stand for 10 minutes. At the end of 10 minutes, another blood sample was taken and then the IV was removed.

The trickiest part of this test was actually getting the IV port in. You see, my veins are deep in my arm and not visible. I chalk that up to my year of cancer treatment back in 1988 when I received four courses of chemotherapy. Ever since, I think my veins hide because they don't want medical professionals tampering with them anymore.

All in all, this wasn't a very difficult test. Fortunately for me, my blood sugar stayed in the normal range over the hour and a half in which this test took place.

My next stop was to the cafeteria for a late breakfast/early lunch with Robert.

1:15 p.m.: After lunch, I was off to the cardiology clinic on the concourse level to be given a Holter monitor. A Holter monitor is worn for 24 hours and it records your heart rate during that entire time. Four electrodes were stuck to my chest and connected by wires to a device about the size of a deck of cards. The tech put the monitor into a paper fabric pouch with strings attached which she tied around my neck. I immediately knew that this was going to aggravate my neck pain but I waited until I could get to the bathroom to move it into my bra where it would be less irritating.

The purpose of this test was to see what my heart rate looked like over the course of the day. In the past, this same test was used to capture data to calculate something called a heart rate variability study. I wasn't sure if Dr. Goodman was repeating the heart rate variability study but I decided to wait until I got the results to see what he had ordered.

1:45 p.m.: With two appointments down and one left to go, Robert and I decided to headed outside for a little while to soak up some of the desert atmosphere. I pulled out my camera and took some pictures of the landscape, the flora and the flags flying in the constant breeze. We found a bench in the shade where we sat for a while. Despite the 90° temperature, the combination of the breeze and the shade made sitting outdoors comfortable.

I then headed to the patient lounge on the concourse level where there was a room set aside with recliners and dim lighting for patients to rest. So I pulled out my MP3 player, plugged in my headphones, pulled out my Kindle and put my feet up to rest up before my next appointment. Before I knew it, the ambience of the room lulled me into a 30 minute nap. I woke up with just enough time to grab a quick snack and something to drink before I headed to my third and final appointment of the day.

3:15 p.m.: Out of all of the tests that Dr. Goodman had ordered for me, I was most worried about the EMG and nerve conduction study. My previous experience with this particular test at UCLA was not a pleasant one. I felt so dizzy and nauseated afterward I was unable to drive myself home and needed to call a friend to come pick me up. This time, I knew I had Robert with me so at least getting back to the hotel wasn't going to be an issue.

I also worried that I'd be in for even more problems this time since the testing would involve both my arm and leg. Yet despite all my concerns, the technicians and doctors who performed these tests did an outstanding job. I certainly see the benefits of having experienced medical personnel conducting these tests.

As for the actual tests themselves, they aren't the most pleasant things to endure.

The nerve conduction part of the test was performed by two technicians who tested my right leg and right arm. Electrodes were placed on the skin along the pathway of the nerve to be tested. So for example, for the median nerve which travels from the wrist to the fingers, an electrode was placed at the wrist and then three electrodes were placed, one each, on the thumb and the first two fingers. An electric shock was generated by the electrode at the wrist and information about how that shock traveled along the nerve to the fingertips was recorded in the electrodes placed there.

The EMG portion of the test was conducted by a physician. Ultra fine wires were inserted through the skin into the belly of a muscle. Once in place, the wires record the electrical activity of that muscle both at rest and during a contraction. During the test the doctor shared with me that the muscles in my shoulder were unable to relax completely which seems to be consistent with the chronic pain and muscle spasms I experience on a daily basis in this part of my body.

When he completed the EMG he shared with me that the most significant finding on the nerve conduction study was evidence of moderate carpal tunnel syndrome affecting my right hand. He explained that surgery would be indicated if I was bothered by the symptoms in my right hand. Once again, his findings were consistent with the numbness, tingling and pain I experience on a daily basis in my right hand.

After spending about an hour and a half in the exam room, my EMG and nerve conduction studies were complete and I was able to get dressed and head back out to the waiting room to meet up with Robert. I was pleasantly surprised that I was feeling no ill effects from the tests and wouldn't need to hurry back to the hotel room to spend time in bed recovering.

Phew! That concludes day 3 of my Mayo Clinic adventure. I'll be back to talk about my fourth and final day tomorrow, which includes my second visit with Dr. Goodman.

Related articles

• My Mayo Clinic Adventure - Day One (ohmyachesandpains.info)
• My Mayo Clinic Adventure - Autonomic Testing on Day 2 (ohmyachesandpains.info)

My Mayo Clinic Adventure - Autonomic Testing on Day 2

After meeting with Dr. Goodman on Monday and receiving my itinerary for the following three days, it was time to get down to the business of figuring out my diagnosis. Of course the only way to do that was to run some tests.

Day Two - Tuesday, March 15

8:00 am: Eight o'clock in the morning -- my autonomic testing was scheduled bright and early. Getting up that early in the morning is not something that is easy for me to do. Thank goodness for my wonderful husband Robert who handled the logistics of getting me back and forth from the hotel to the clinic.

The instructions attached to my itinerary said I should eat a light breakfast 3 hours before the test and the no food or drink after that. So I did the math, and decided I would go fasting because I wasn't getting up at 4:45 am to eat a light breakfast.

I was also instructed by Dr. Goodman to hold my sleep and allergy medications, which I thought would be no big deal, Well, that was until I couldn't fall asleep, tossed and turned when I finally did fall asleep and then woke up with a massive headache at 4:30 am. Since I needed to get up to take something for the headache and that medication needed to be taken with food, I wound up having a light breakfast after all!

Tests always make me anxious and I felt even more so when I read that Robert couldn't be in the autonomic testing lab with me. Luckily for me, the tech who conducted the test (boy I wish I could remember her name!) was warm, kind and sweet. We spend much of our time together talking about life in Arizona, gardening and her trips to California. She really made me feel relaxed; I knew I was in good hands.

Over the course of about an hour and a half, she conducted four different tests: 1) a resting sweat output test, 2) a deep breathing test, 3) a Valsalva test and 4) a tilt table test. With the exception of the tilt table test, all the other tests took place while I was laying down on an exam table. I suspect that during the moments of quiet before and between tests, the machines were recording my heart rate and blood pressure to establish some baseline and recovery measurements.

1. The resting sweat output test: For the first test, the tech applied one small circular capsule to my left arm and two to my left leg. Then she ran a small electrical current through the capsules to stimulate a sweat response. It felt like a buzzing or stinging and was a bit uncomfortable. My skin didn't feel sweaty, but that was because the capsules where actually drawing sweat into them to measure the amount I produced. This part of the test last about 5 or 10 minutes total.

2. The deep breathing test: This test was surprising similar to using my emWave PSR device. I was instructed to watch a breath pacer, which was a light bar that gradually lit up when I was to breath in and gradually went out when I was to exhale. Each breath occurred over about 20-30 seconds and I needed to complete eight deep breaths per session for a total of two sessions. Thank goodness there was a break between sessions, otherwise I might have gotten really lightheaded and passed out.

3. The Valsalva test: This was a different kind of breathing test. I was instructed to take a deep breath in through my nose and then blow it out through my mouth for about 20 seconds into a tube which was connected to the blood pressure meter. With my exhalation, I needed to maintain a constant pressure of 40 mm Hg. I got one practice run before completing two sessions that were recorded. Let me tell you, it was hard to hit and maintain that 40 mm Hg pressure mark, but I seem to have mastered it by my third attempt.

4. The tilt table test: So the table that I had been laying down on for the previous three tests actually moved from horizontal to vertical and back. Before any of the testing began, the tech actually had me step up against it while it was vertical and then lowered me down into a horizontal position. This time, big, wide pieces of velcro secured me to the table for my trip back upwards. The tech explained to me that she would only be raising me up 70 degrees, so in essence I was ever so slightly tilting backwards.

This part of the test was hard on me; I just don't do well standing up. For this test, I had to stand still for 10 minutes. Quite honestly, it was the longest 10 minutes of my life. At the 8 minute mark, I really wasn't feeling well at all: quite light-headed and woozy. The tech said we could stop, but I asked if she wanted me to tough out the last two minutes, which I did. I could see my blood pressure readings during this part of the test and my brain registered that my blood pressure was steadily dropping over time. 'That can't be good,' I thought to myself. At the end of the test, I was lowered back down into a horizontal position.

After all these tests, I needed to take some time to recover, first laying down, then sitting up. I eventually slid off the table and headed for the chair next to the tech's desk, where I spent a few more moments before heading out of the lab and back to Robert in the waiting room. I definitely felt a little wobbly on the walk out.

The only other thing I needed to do was check in with the Scheduling desk to see if any of my outstanding appointments had been scheduled yet. A friendly staff person checked and let me know they were still pending. She gave me a card with a number to call later in the day so I could check back on their status.

Thankfully that was the only test scheduled for Tuesday. I was glad when we finally made our way back to the hotel, eager to spend the remainder of the day resting and napping.

Tomorrow is my regularly scheduled Mission 2011 post, so I'll be back on Friday to share my day 3 at the Mayo Clinic with you.

Related articles

• My Mayo Clinic Adventure - Day One (ohmyachesandpains.info)
• Dysautonomia Do and Redo (ohmyachesandpains.info)

My Mayo Clinic Adventure - Day One

I spent all of last week in Scottsdale Arizona so I could be seen by dysautonomia expert Dr. Brent Goodman at the Mayo Clinic. Beginning this week, I want to share with you my impressions of this experience. This was my very first time traveling outside of the Los Angeles metropolitan area to seek medical care.

Day One - Monday, March 14th

1:00 PM: I arrived right at my check-in time, delayed in getting there 15 minutes early by road construction along Shea Road. As we arrive, I see that the clinic building is a soft grayish-tan color that almost blends into the surrounding desert landscape. Robert heads for patient drop off curb at the front door, I get out and I hurry inside.

Just inside the sliding glass doors is a reception desk. The staff sitting there smile at me and ask me where I am going. "Third floor," I said. They let me know the elevators are on the other side of the wall and then a volunteer pops out from behind the desk to escort me there.

'Wow,' I think, 'That is some kind of service.'

It's a short elevator ride up to the top floor of the building. When I disembarked, I see a large waiting room half full of people. Ahead of me is two poles connected by rope line with a sign for Check-In on the left and Scheduling on the right. I get into the Check-In line and wait for the two people ahead of me to get called to the large oval desk where there are four smiling employees working the Check-In windows and four working Scheduling windows.

'Seems like everyone here has a smile on their face,' I note to myself. 'This must be a nice place to work.'

I present my appointment confirmation paperwork when I am finally called to the desk. The check-in is a breeze and I am asked to sit on the left side of the waiting room. By now, Robert has joined me, having no problems finding a parking space in the ample and free underground parking beneath the building. Then I am called to the far right window on scheduling side of the desk, which is registration. Since I pre-registered over the phone the week before, I just need to sign one form and present my photo ID and insurance cards.

As I am standing at the registration window, I hear my name called. "Here!" I say in response. The woman helping me lets the staff member calling my name know I am almost finished with my paperwork. I then go straight from the registration window to a exam room.

Sitting on a couch in an examination room, I get started on the three pages of forms I somehow neglected to complete in my appointment packet. I can only get a half page completed by the time Dr. Goodman arrives. For a patient who is used to waiting up to one hour to be seen by a doctor, I am quite amazed how on time they are here at the Mayo Clinic. Which means I need to make sure I get to any subsequent appointments on time, if not early.

After introductions the doctor asks me for my medical history. Like the professional patient that I am, I dive into my soliloquy, inviting the doctor to stop me and ask questions if I get off track along the way. He compliments me at the end of my story for giving such a complete and detailed history.

Next is the physical exam. He excuses himself from the room so I can disrobe and change into a hospital gown. He is gone long enough for me to work on the forms again, but I still don't have them done by the time he comes back. Once back in the room, he conducts one of the most complete exams I have had from a neurologist. Along the way, I am surprised to learn that I have problems telling the difference between sharp and dull pain stimuli; I silently chalk that up to my fibromyalgia which makes all pain seem bigger and stronger than it is.

He leaves the room again so I can change back into my clothes. This time, I finally finish those three pages of forms by the time he returns again. Now it's his turn to talk, explaining that I have three risk factors for dysautonomia: my previous cancer treatment, my chronic Hepatitis C infection and my type 2 diabetes. He's not sure if he can determine which ones are responsible, at which point I interject that I am not so concerned about that. I tell him what I really hope is that he can help me manage my symptoms better.

He wants to run several tests, including one to make sure that my symptoms aren't related to a particular type of cancer. 'I'll worry about cancer if the test comes back positive,' I think to myself. He is also putting in a referral to the Hepatology Department, asking for a consult on my Hepatitis C status. We end the visit with Dr. Goodman letting me know that we will meet again towards the end of the week to review the test results.

Robert and I walk back out to the waiting room. I ask him what he thinks so far and he's not sure yet. We both like Dr. Goodman, but Robert wants to reserve judgment until he sees what tests the doctor orders and what his recommendations are.

They call me from the Scheduling side of the desk and give me a pager. The staff person helping me lets me know Dr. Goodman has ordered eight different appointments for me and it's going to take some time to schedule all of them. When the scheduling is complete, the pager will go off, letting me know I need to head back to the desk and pick up my appointment schedule.

Robert and I spend most of the time in the waiting room, talking about our expectations and reviewing my first meeting with the doctor. Then we head down to the parking lot so I can grab a snack I left in the back seat of the car. The time seems to move quickly, and by the time we return to the waiting room, my pager is going off.

Up at the Scheduling window I am handed my "itinerary" for the week. They still need to schedule my follow up with Dr. Goodman and they are still trying to get me into the Hepatology Clinic, so I need to check back with them tomorrow for these appointments. As I stop to visit the ladies room on our way back to the car, Robert studies my itinerary and starts figuring out wake-up times, meals breaks and how much time to allocate to travel to and from the clinic.

Once back at the hotel room, I take a stab at refining his schedule, since some of the tests require either fasting or no eating and drinking for three to four hours beforehand.

It's a good thing I asked about how long I needed to stay in Arizona when I scheduled my appointment. I got very good advice when I was told to schedule my first appointment on Monday or Tuesday and then plan to keep the rest of the week open for tests and follow up. By the end of day one, I already know I have appointments for the next three days...

Come back and join me tomorrow. I'll be writing about my experiences with autonomic testing, catecholamine testing and an EMG and nerve conduction study.

Dysautonomia Do and Redo

Image by Sybren A. Stüvel via Flickr
We all have our pet peeves. My husband's pet peeve is having to do something over because it wasn't done correctly the first time. He always says, "Let's do this right now because I don't want to have to redo it later."

I admit this is good advice, advice I try and follow myself, especially when attempting something that uses up a lot of my scarce and precious energy. Which is why I am so upset that the dysautonomia consultation and autonomic testing I had back in October seems to have been a total waste of my energy.

A got a copy of the consultation report in November from my referring doctor and the first thing I noticed was that several of the recommendations I was given verbally didn't make it into the report. I read it a second time and the report failed to give to my health care team specific information about my dysautonomia symptoms or suggestions for treating them. On the third read, it wasn't even clear if my diagnosis of dysautonomia had been confirmed!

Then my neurologist and primary care doctors asked why I wasn't taken off my beta-blocker a few days before the tilt table test and other autonomic tests.

Aargh!

So now I'm in the process of arranging another consultation with the experts at the Mayo Clinic. I was really hoping to avoid all that this is going to entail, including out-of-state travel and a week away from home. This is why I opted for an evaluation from a Southern California clinic last year. But since that didn't work out, I'm resigning myself to the fact that this medical trip is needed while trying not to kick myself in the butt for not just going this route in the first place.

In case you were wondering, yes, I have gotten the "do and redo" lecture from my husband about this, plus a "they better do everything while we are out there" one. Sigh.

At this point, all I'm asking the universe for is the energy to get through this and the ability to just grin and bear all the hassles. Plus the words to address my husband's concerns because I can't do this without his help. Most of all, I need to get one rocking consultation report out of this, because if I can get this in hand all the trouble to travel for medical care will be both justified and quickly forgotten.

PS If you are looking for a good description of what to expect during a tilt table test, check out Ash's Health Blog. Perhaps I'll be able to write my own description of the process when I am finally administered the test correctly.

Mission 2011: Bend Down, Not Over

I am so excited to get started reporting to you about my Mission 2011.

As I mentioned last week, January is the month that I am focusing on reviewing my progress on making activities fibro-friendly by modifying how I physically approach tasks.

Over the past two weeks I have been more closely observing my body mechanics to see where I need reminders and improvement. The first thing that literally jumped out at me is that I bend over from the waist way too much. Not only is this an example of bad body mechanics, it also potentially sets me up for problems with dizziness and fast heart beats related to dysautonomia and postural orthostatic tachycardia syndrome (POTS).

I've included a video at the bottom of this post to remind us all of the back-saving way to lift objects. The simple take-away message here is lift like a forklift, not like a crane. To put it another way, bend down from the knee, not over from the waist. Even if the object I am after isn't all that heavy, like a piece of paper or my keys that I dropped on the floor, I need to practice good body mechanics so I don't aggravate my pain or inadvertently pull a muscle.

But since living with fibromyalgia isn't just that simple, I also need to take this advice a little bit further...

1. I need to remember to use a reaching device like a PikSitk to pick up small to medium size objects off the floor so I don't having to bend over at all.
2. For tasks like loading or unloading the clothes wash machine and dryer or putting groceries away into the bottom half of the refrigerator, I need to consistently pull out my folding step stool and sit down for the task.
3. I need to continue to rely on my husband so I can avoid the really heavy lifting.
   
4. I need to check and make sure I position myself close to the object I am attempting to pick up, so I don't have to reach far away from my body once I get down there.
5. I need to not hesitate to hold onto a chair or other object on my way down if my balance is shaky.
   

Another thing I noticed is that I hold my breath when I bend down. So this week, I have been extra vigilant about making sure I take a deep breath, exhale while bending my knees and then resume normal breathing at the bottom of the movement. Quite surprisingly, this simple "bending meditation" really does make a difference. I feel less taxed and more comfortable when I remember to breath out when I bend down like a forklift.

I encourage you to observe and see if you bend over more than you bend down. Plus try my "bending meditation" and see if it makes a difference the next time you retrieve an item off the floor. Finding the sweet spot is all about saving little bits of energy for healing throughout the day and I'm betting that proper body mechanics is one key way to do this.

Related articles

• Lifting Properly to Avoid Neck Pain (everydayhealth.com)
• An Overview of Postural Orthostatic Tachycardia (brighthub.com)
• Winter Holidays can be "Bad for the Back" (prweb.com)

October 2010: Welcome to the Big Time

Image via Wikipedia
So, wow, it's November October already. That last sentence was a huge Freudian slip on my part. I understand why--I just finished looking at my calendar for this new month.

Yup, I'm pretty sure I can't wait until this month is over.

You see, I have doctors' appointments every week this month of October. Which, by the way, is a pretty doable schedule, especially since I will have Robert's help for each appointment. If they were all routine follow-ups, I'd say, 'No big deal.' Except the first two appointments this month are a big deal.

Week One

On Friday, October 8th I have my first routine colonoscopy. I am starting early because my mother died at age 61 from metastatic colon cancer. She had her first colonoscopy at 50 and everything was fine. Then she somehow she never made it back for another one at age 55...

I'll never forget April 13, 1998. It was the day after Easter and a month and a half before my wedding. Robert and I spent the previous day at my parents' home enjoying Easter dinner. She called early the next morning with abdominal pain, needing a ride to an Urgent Care appointment.

After spending several hours in the clinic, they transferred her to the Emergency room. It was there that a scan was performed and the truth revealed. At age 60, she had a large tumor in her colon that had spread to her liver. During surgery the next day, the surgeons discovered so many tumors on her liver that they only counted the largest ones. With stage 4 cancer, her prognosis was not good. She died 11 months later.

Despite my anxiety and fears about this procedure, I am determined not to let this happen to me. It's all about prevention!

Week Two

I'm going down to Orange, California on Thursday, October 14th. My destination is very close to Disneyland, but I won't be visiting Mickey Mouse. Instead, I'm getting some medical tests which might just be the medical equivalent of a roller coaster ride.

I'm visiting the University of California, Irvine Neurology clinic for a consultation in the morning regarding my dysautonomia. Then I am having autonomic testing done in the afternoon (aka the roller coaster ride.) I anticipate that this may include a tilt table test and whatever else they do to diagnose dysautonomia.

The outcome I hope for is better treatment of my dysautonomia symptoms from a doctor who is a true expert in the field.

(Why they don't have a clinic like this at UCLA, I'll never know...)

The Hard Parts

I don't like be sedated, so that part of the colonoscopy for me is anxiety-provoking. Since I have sleep apnea, I'm also concerned about what precautions the medical staff will take to ensure this doesn't complicate things. The prep for the colonoscopy seems like no fun at all and I am worried it will make me physically sick.

My biggest fear about the autonomic testing is passing out. (Yeah, I really don't like being unconscious.) I am also realistically worried that the testing will flare me up. Plus chances are I am going to be somewhat sleep deprived that day because of the time of the appointment, which will already make me more symptomatic.

Most of all, the hardest part for me about the next two weeks is overcoming my fears about the unknown.

Plan of Attack

Being a former Girl Scout, I'm taking the motto Be Prepared very seriously. So for the next two weeks, I am going to talk about how I face my fears, get ready and get through these medical appointments and procedures. Which means you can look forward to posts with lots of ideas you can try to help you cope with big time medical appointments too.

I am also going to ask you, my readers, to share your tips and tricks with me too. Comments showing your support and encouragement will be greatly appreciated too.

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