Tuesday, June 14, 2011

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.


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.

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Anonymous said...

Don't know if you have seen this electrolyte drink recipe, does your blood sugar issue allow you to have agave?


ashpauls said...

Do you do anything specific for fibromyalgia diet wise? I have crohn's disease IBS as well as pots and fibro. and the fibrous foods are good for my crohn's, but seem to be affecting my fibro. The whole idea is to get the inflammation down to help my pots, crohn's, fibro. but it seems if I help crohn's, I neglect fibro and the other way around. Wondering what you do.

Tami Stackelhouse said...

I have a client who is having a hard time finding a CPAP mask to fit her small nose. I'll show this one to her. Very cool!

I don't know if I mentioned it here on your blog, or on someone else's, but what I use for electrolyte problem is Prolytes. It's just the electrolytes that you can add into any liquid. No flavor, no sweetener, just the electrolytes. I'll add them into my water with just a little bit of lemon juice, or even my protein shake for breakfast, and it makes a big difference. That little bottle also packs well on trips. =)

Tami Stackelhouse said...

Ashpauls - I've actually had fantastic results working with clients who have Crohn's, celiac, IBS, fibro, diabetes, etc. If you want more details, feel free to read my story & contact me via info on my website. I don't want to hijack Selena's thread or site. <3

Mo said...


You have a lot going on and you do well keeping everything running snoothly.

When you mention steroid nasal spray the hair on the back of my neck stands up. I used them for quite awhile, too long in fact, and it damaged my pituitary which then caused my Addison' Disease. I'm glad you are off them!

Thanks for sharing!

Felicia Fibro said...

I was amazed to hear about all the different ways to treat sleep apnea, when they thought I might have it. I'm glad the switch has been helping your nose.

I'm so glad to hear about that electrolyte drink as I'm going to pass it on to relatives with diabetes. It has always been tricky finding something they should drink when sick. Is it only on Amazon? Also, does it have an expiration date?

Kudos to you for staying on top of all these things. As you said, it is always an ongoing process! Good luck at your Hep C appt!