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

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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! :)

Student solves her own medical mystery

Student solves her own medical mystery

So here is another example of how important it is to be your own advocate if you have a chronic illness. If you don't have a diagnosis, or believe you have the wrong diagnosis, never give up until you have an answer!!

I'll also be posting in a week or 2 about how to deal with POTS without drugs, but it's taking a little bit to get it all together. In the meantime, I wish good health to all of you!

Under Our Skin

I wanted to share an amazing excerpt from a documentary about Lyme disease. It shows how debilitating Lyme can be, and how controversial.

Drugs anyone?

Treatments are awesome. Pills are great. What's not to love about taking a billion pills all the time 4 times a day and paying hundreds of dollars a month for them while still not being able to walk around much or drive a car? Speaking of which, sorry that I have had to take a several month hiatus from blogging due to health issues (no surprise I guess). Hopefully I'll be able to be more consistent with them going forward, but we all know that there is no predicting how sick we will get.

Okay, I thought we could begin the "treatments" portion of my blogging with a real demonstration of how many pills I have to take a day. This picture is how many pills I have to take every day:

Doesn't that look like fun? No, it isn't fun, but so far it has been necessary for me to have some semblance of a life over the past few years. All of the treatments for POTS are for symptom relief only (ie none of them cure it in any way) to make life a little more livable for us. This post is going to deal with the prescription meds only, then later I will talk about lifestyle changes and supplements that can be helpful.

Remember, none of what I tell you is meant as medical advice but is for informational purposes only. Do not change your medications (start or stop) without contacting your doctor.

One of the best resources that I have found for POTS drug information is dinet.org. They have a great section that describes the most commonly prescribed drugs for dysautonomia and how they might be helpful, as well as non-medication treatments. I also have a great article by Dr. Grubb about POTS and treatment options on my website www.wheredidigetthislemon.com (Go under Links and down to POTS articles to find his article).

Here is a quick rundown of some of the most common drugs used for treatment of POTS (keep in mind this is a super quick summary and barely skims the surface about most of them):

Beta blockers: since high heart rate upon standing is such a huge component of POTS, beta blockers can be very helpful to reduce heart rate. There are many POTSies that cannot tolerate beta blockers or do not find them to be helpful. They aren't for everyone, but can be a lifesaver for some.

Midodrine or octreotide: these are vasoconstrictors that can be helpful to decrease blood pooling in the legs and can increase blood pressure (helpful for orthostatic hypotension as well)

Florinef: a mineralocorticoid that increases the amount of salt retained by the body, thereby increasing overall fluid volume/plasma volume.

Mestinon: usually given for Myasthenia gravis, but recently has been found to be very helpful for some POTS patients. It inhibits the breakdown of acetylcholine, a neurotransmitter, and helps with neural transmission between nerves.

SSRI's: increase the level of serotonin in the body which enhances how the brain sends nerve impulses; can reduce many symptoms, but not helpful for all patients

Clonidine: centrally acting alpha-agonist that can be helpful for those with sympathetic POTS (helps reduce sympathetic activity), but is also used to treat hypertension and therefore is not for all POTSies

Benzodiazepines (klonopin): anti-anxiety medications (CNS depressants) that can help with anxiety or panic attacks; addictive and not for long term use

Desmopressin (DDAVP): enhances reabsorption of water in the kidneys by mimicking the effect of natural Anti-Diuretic Hormone, therefore can help patients increase water volume and blood pressure.

Erythropoietin (epo): stimulates the production of red blood cells, but can have many dangerous side effects and therefore is usually not given unless other therapy is not effective.

IV saline: can be helpful for some POTSies, but often must be given daily to have any significant benefit.

There are some other drugs that are helpful for POTS but are less directly related to blood volume treatments. Some of these include Proton pump inhibitors like Protonix (to reduce acid reflux, a very common disorder among POTSies), Antihistamines (many of us have allergies), Laxatives like Miralax (many of us have GI motility issues), anti-nausea medications, sleeping pills, etc.

This is not an exhaustive list by any means, just some of the most common treatments. That being said, many POTSies cannot tolerate drugs and must find non-pharmaceutical methods to help their POTS. Sometime in the future, I'll post about non-drug therapies that can be essential for living with POTS.

So what drugs do I take, you ask? Well, we're going to get super personal here, but here goes: many of us have tons of allergy problems, so for those I take Allegra (antihistamine) and Singulair (to reduce allergic rhinitis). I also have an autoimmune thyroid disorder (used to be hyperthyroidism, but now hypo after treatment) so I'm on Synthroid and Cytomel for that. For dysautonomia specifically, I am on Midodrine (to increase blood pressure), Bystolic (to decrease heart rate), Florinef (to increase water and salt retention), Celexa (SSRI to balance neurotransmitters like serotonin), Protonix (to reduce acid reflux), Orthocyclen (to balance hormonal fluctuations). For pain, I am on Tramadol (pain), Zanaflex (muscle relaxant), and Lyrica (neurologic pain). I sometimes take Ambien (sleeping pill) if I can't sleep. Recently, I was also started on Doxycycline(antibiotic) and Rifampin (antibiotic) to treat a Bartonella infection and have to stay on it for 3-8 months! Whew! That's a lot of pills, huh? I'm constantly trying to get off of them or reduce them, but since I am doing a bit better now than I was a year ago, I'm nervous to change too many things at once. And this is JUST the drugs, not the supplements yet. Those will be coming soon...

So are you jealous yet? Hey, I guess I can't complain because these drugs now allow me to stand for up to 5 minutes at a time! I know that this has been a VERY long post, but I wasn't sure how to make it short and still cover most of the meds... Again, next time I'll talk about non-drug therapies for POTS that can be just as helpful as the drugs (give me a little while to put it all together though...this research stuff takes it out of me!)

Vitamix, yo.

After a long hiatus, I am finally posting a real entry to my blog. I have been really ill over the past several months, but I'm on the mend and finally able to communicate again!

To mark my return, I thought I would talk about a new toy that I got for my birthday: the magical Vitamix.

For those of you that do not know about the Vitamix, it is a crazy powerful blender (similar to the one from "will it blend" series on youtube) that can pulverize almost anything. I have been really trying to improve my nutrition b/c I feel better when I don't eat a lot of junk, but it can be really difficult to get proper nutrition and no processed foods when you feel terrible all of the time. I wanted the Vitamix so that I can have fruit and vegetable smoothies and soups without much effort required. So, my parents and husband pitched in to get me this mega-expensive blender for my bday! Such a great family! So far, I love it. I've been blending everything I can find and I think it will really help my nutrition. Maybe on future posts I will talk about recipes or cookbooks that I like...who knows?

Hopefully you'll be hearing from me more regularly now that I am feeling a bit better. Maybe I'll actually get to that post on drugs for POTS that I've been talking about for months and months! :) Hope everyone is feeling well!

Homemade Heating Pad

Sometimes the pain can really get to you and you need something to take the edge off. If you don't have a heating pad that you like, then try making (or having someone make) this heating pad for you. It could be helpful for painful necks and backs or just relieving excess tension. I have not made this pad myself, but it sounds pretty easy and is probably much more attractive than an ordinary heating pad! An even quicker option would be to take an attractive and soft sock, fill as instructed below, and sew the open end closed. Hope this helps those aching muscles and joints!

I promise I will post about drugs sometime soon...things have been bumpy lately, so I haven't been able to post about it yet, but I will!

Courtesy of Martha Stewart Living, Inc

Tools and Materials
Sewing machine
Iron
Fabric (about 1/2 yard will make at least one)
Machine-sewing thread in coordinating color
Bone folder
Scissors
Dried cherry pits or buckwheat
Lavender essential oil (optional)

Heating Pad How-To
1. Fold a 20-by-14-inch piece of fabric in half lengthwise, right sides facing.
2. Sew one short side and one long side with a 1/4-inch seam allowance.
3. Fold the open end out 1/4 inch and press it.
4. Clip the corners, being careful not to cut into the seams. Turn the fabric right side out.
5. Use a bone folder to push out the corners and make them sharp.
6. Fill the bag a little less than halfway with dried cherry pits or buckwheat. If desired, the pits or buckwheat can be mixed with a few drops of lavender oil before filling.
7. Close the open end of the bag with a top stitch.

Illnesses on top of Illnesses...

Hi everyone. Sorry for the long delay in my posting, but I have been dealing with some major illnesses on top of my regular ones...a horrible stomach flu that left me severely dehydrated, and a resistant sinus infection that I can't seem to kick. Just wanted to let you all know that I will be returning to posting in the next couple of weeks, but things have been a little out of my control lately. This is a picture of me getting IV fluids in my living room, if you're wondering what's happening there. Hope all of you are managing to avoid the viruses this season and feeling well. Be back soon!