When Blood Draws Go Bad...

Remind me to ALWAYS make them use a butterfly catheter to draw blood from now on!!!

Eating Healthy in a Dirty World

Everyone "knows" that a healthy diet is important for a healthy life. But how many of us really eat in a very healthy way? I know that over the years I have been guilty of having a severe sweet tooth, other people I know are addicted to fast food, others to white bread. Well, my hubby and I have finally been following an extremely healthy diet for several months now. We gave up all sugar, wheat, caffeine, dairy, eggs, and beef as a kind of "detox", and then have slowly added some of the foods back in (like eggs, whole grain breads, some dairy, and organic beef).

Torture, right? Well, it actually hasn't been as bad as it sounds. The first week SUCKS, but then you get more used to it and it's not quite as difficult as long as you plan ahead. It really made me realize that I was super addicted to wheat and sugar, while my husband is addicted to caffeine and fried foods. I was really able to stop my sugar cravings after the first week, and it's kind of nice not to be ruled by my cravings. Adam's energy has been much higher while on the diet (mine is not quite as simple, but I definitely feel cleaner).

That being said, I still don't think I'll be able to stay on a diet this strict forever, but I think it has been really good for us to do it. Hopefully, it will lead to us making better choices in the future for what and how to eat, and to try to keep our diets as "clean" as possible. I really do think that I have been feeling better while I've been on it...just less sluggish and heavy. Oh, and you also lose weight eating like this, which is a bonus! The diet we have been following is from the book Ultrametabolism by Dr. Mark Hyman. He is an MD, and has great recommendations on how to eat as well as what supplements to try to be able to correct any imbalances you may have. You can even download some of his book for free on his website. I highly recommend it! I hope that everyone tries to eat as healthy as they can and Good Luck!

Chronic fatigue syndrome linked to "cancer virus"

I wanted to share this article discussing a new study that links a "cancer" virus to CFS. The virus apparently was found in 2/3 of the people tested that had CFS versus about 8 out of 100 healthy people. In addition, some of the symptoms that can be caused by the virus overlap with the symptoms of Chronic fatigue syndrome. This has the potential to further our knowledge of the cause of CFS. Very interesting stuff!

Chronic fatigue syndrome linked to 'cancer virus' - health - 08 October 2009 - New Scientist

Shared via AddThis

In Memory Of Michele

Recently I lost a family member, Michele Butare, to breast cancer. She was a wonderful mother, sister, wife, and woman, and she will be missed greatly by all that knew her. She touched the lives of so many through her amazing strength, and it is hard to believe that she is truly gone. We must do more research into fighting this horrible, painful illness. Please consider donating to the Breast Cancer Foundation to fight this disease that steals the lives of so many women every year. This website details how you could donate in her name to some of her favorite charities. We will never forget her and she will live on in our hearts forever. We miss you, Michele.

Invisible Illness Awareness Week

Okay, so I missed the first day of Invisible Illness Week, but I have an excuse...my invisible illness had me flat out! So, better late than never, right? Invisible Illness Awareness Week is an important event to increase the public's awareness of how prevalent illness is in our society. Everything from rheumatoid arthritis to MS to Crohn's disease to dysautonomia is encompassed in the invisible illness label. Many people struggle day to day with their illnesses, and their caregivers often struggle just as much. We need to offer support for the chronically ill and their caregivers and families because, unfortunately, most of us will have our lives touched by an invisible illness at some point in our lives.

Last year I did a 3 part series on Invisible Illness including You Look Good, You Must Be Better Right?, What NOT To Say, and The Push-Crash Cycle. I thought this would be a good time to revisit those posts as it is important to remember that just because you can't see it, doesn't mean it isn't a devastating illness. I hope that you all find these helpful!

Why You Should Stay Hydrated...

Hi everyone.  Sorry that I have been MIA for so long but, as many of you may have guessed, I haven't been feeling too well.  Thank you for the well wishes!  I am not quite up to a long post, but I thought I might try a short one so that you know I'm still alive.

As a POTS sufferer, I "know" that staying well hydrated is essential to my well-being...  Well, the know is in quotes b/c I have been super-slack with my salt and pedialyte intake lately, and I paid the consequences.  The thing that is interesting about dehydration is that your brain just won't work properly so you aren't always rational.  For example, I should know better than to let myself get dehydrated, however, the worse it got, the worse I was about hydrating.  So, my hubby, parents, and doctor all teamed up on me and finally got it through my thick skull that I needed more pedialyte and guess what...I feel a lot better.  I'm still in a mega down-cycle right now, but I was barely able to move for about a week there.  So, the moral of the story is:  STAY HYDRATED!  I'll be in touch soon this time!

Anti-Dysautonomia Non-pharmaceutical Tricks of the Trade!

All right POTSies...here are some of my tricks (or ones I've heard are helpful) for combating dysautonomia aka Postural Orthostatic Tachycardia Syndrome. Again, none of this should be considered medical advice. Ask your doctor before changing your salt intake or adding the therapies listed below. These are for educational purposes only.

SALT: It's the opposite of what we've been told our whole lives...that salt is bad for you. Well, not for us. We are prescribed by our doctors 5000-10000mg of salt a day!! Believe it or not, I had been placed on a LOW salt diet before my diagnosis...no wonder I got so sick! So, get used to everything you eat tasting like a salt block. Add salt to everything and liberally if you have POTS. Unfortunately, if you're one of us that have severe acid reflux symptoms, that can be exacerbated by too much salt, so you'll have to have the maximum amount you can stomach without causing severe GERD symptoms. Many of the fluids listed below also have a significant amount of salt in them, so they can help in this category as well. Many people try Thermotabs aka salt tablets, but I think that they are created to torture us! I took a couple of them, and found them to be painful, nausea inducing, and then didn't help at all. If you enjoy suffering, then definitely try them...:)

Fluids: You have to keep your fluid volume high and, to do that, you need to drink LOTS of fluids. Here are some of the ones that I have found to be helpful.

Pedialyte: my personal favorite for fighting dehydration. I find that when my symptoms are really bad, having a liter of pedialyte makes me feel worlds better, which the others can't seem to do. I highly recommend. You might want to try the plain flavor, but if you can't stomach it by itself, then try adding just a TINY bit of a crystal light packet to it to make it more palatable.

Ceralyte: nice for travel b/c it is in packet form and can be mixed with water wherever you are. Like all of the electrolyte mixes, it has to be used quickly. It is not the greatest tasting stuff (made from rice and tastes like it) but is great for freezing into ice cubes and adding to smoothies later or if you need electrolyte help when traveling.

Gatorade: super easy to get and cheap, but super high sugar content and doesn't seem to work as well for me as the other mixes. If you don't mind drinking gallons of the stuff, then it is probably helpful, but I tend to have it only occasionally because it is so sweet and not as effective for me. The same goes for powerade and similar drinks (although I haven't tried propel).

Water (of course): I drink close to 3 L a day of the stuff and (literally) can't live without it. It is a requirement for all of us. Some people say that 2 L is adequate, but each person has to do what feels best for them. Carry it or another liquid with you at all times and if a major attack of POTS is coming on, down about 16oz fast and that might help stem the tide.

Homemade Electrolyte Mix: 1 qt water, 2 Tbsp honey, 1/4 tsp salt, 1/4 tsp baking soda. Combine until dissolved. Will last in fridge up to 24 hrs only. Great if you're in a pinch and dehydrated. Doesn't taste as good as some of the name brands, but not bad.

Countermaneuvers: I find it helpful to cross your legs or flex your thigh and calf muscles while standing if you are having an increase in symptoms, to lean forward onto a surface, or to walk in place. Others listed by dinet.org include sitting in a low chair, sitting in the knee to chest position and leaning forward with your hands on your knees when sitting and tightening the buttocks. These may increase the amount of time that you can remain upright, but they are usually only temporarily helpful.

Compression stockings: These can be really helpful for a lot of POTSies by combating the pooling of blood that can take place in the legs. 30-40mm Hg compression is usually needed to see any results and often need to be waist high; these can be prescribed by your doctor.

Pace yourself: Pacing is extremely important to prevent exhausting yourself for several days after a period of activity. By doing small amounts at a time, and frequently resting, you can prevent or reduce the number of days that you are super sick and unable to move. There is a good summary of how to pace yourself (this one is for fibromyalgia and CFS, but the principles are the same) at about.com that is worth checking out.

Frequent small meals: Large meals can cause too much blood to be diverted to the abdomen, and can increase symptoms in many people with dysautonomia; so, eating frequent small meals can help prevent these symptoms, and also helps to keep blood glucose levels stable throughout the day to increase energy.

Elevating the head of the bed: Doctors frequently recommend elevating your head at least 6 inches because it can help increase overall blood volume; It can also help with the frequent GERD that many of us deal with daily.

Exercise: even small amounts of exercise can make a difference (I know how hard this can be). Try not to allow yourself to get overly debilitated by staying in bed. It's very important to get up frequently, even for short periods just to keep your body at work. Many people find that exercising for 5 min increments each day makes a significant difference in how they feel. Resistance training, especially of the legs, can also be helpful over time.

Sitting in the shower: try using a shower seat when taking a shower...it can help reduce the risk or feeling that you are going to faint. And I can tell you from personal experience that it is NOT fun to faint in the shower! Also, taking a lukewarm shower can help reduce dizziness and lightheaded-ness during the shower.

I'm sure that I have managed to miss a bunch of helpful techniques, but this should at least be a good starting point. If I think of more things, I will add them to the blog in the future. If I've missed any helpful techniques, please comment on this post so that everyone can benefit from your discovery. Good luck to all of you in managing your POTS! :)