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!

Dysautonomia Research Fund

I hope everyone has had a wonderful holiday. During this time of giving, we wanted everyone to know about an important non-profit dysautonomia research fund we have founded.

Many of you who have been following my blog know that I have been struggling with a disease that has disabled me and changed my husband's and my lives forever.

To give those who are just joining us on my blog a summary of what we have experienced, here's a quick recap. I have been severely ill for over 4 years. In 2004, I was an active, healthy 26 year-old emergency veterinarian. It all started with a severe cat bite that landed me in the hospital on IV antibiotics for 3 days. I then began experiencing severe dizziness, blurred vision, heart palpitations, fatigue, pain, and fainting. I was unable to drive, walk for more than very short distances, or stand for more than a few minutes without assistance. Even my memory and concentration were affected to the point where a long conversation would force me to rest for several days.

After 1½ yrs of getting progressively worse, we went to the Mayo Clinic in Minnesota where I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia, which is the dysfunction of the autonomic nervous system. POTS is a chronic illness that is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. Patients experience tachycardia, constant lightheadedness, dizziness, weakness and extreme fatigue. I have never been able to go back to work and have been disabled since my illness began.

This disease has no cure and the cause is unknown. Some cases can be triggered by an illness or insult to the immune system, such as the cat bite, but it is not understood how this happens. Even treatments are only able to give some symptomatic relief, but cannot affect the disease itself.

There is very little research being done on these diseases, so Adam and I have decided that it is important to us to start a fund dedicated to increasing research devoted to dysautonomia and POTS.We have chosen to join with the UNC Medical Foundation of North Carolina, Inc. to develop a UNC-based Dysautonomia Research Fund. This fund will give yearly seed grants to early researchers looking into dysautonomia and POTS. I will be on the board that decides who will receive this yearly grant, and will ensure that the money goes to a candidate looking to further research that can assist those of us that suffer from dysautonomia.

This research could make an amazing difference in the lives of all people with dysautonomia and POTS. We feel that this program will be able to do a huge amount of good and hopefully help to fight dysautonomia and POTS. The more money we can raise, the more research we can fund. If we can raise more than $100,000, we can fund research in many institutions throughout the country. So little is known about dysautonomia and POTS, that every dollar that goes to research is essential. We have seen firsthand how life-altering POTS can be, which is why it is vital more research is done.

If you are able to donate to our Fund, please consider giving as much as you can. We know that economic times are tough right now, but our health depends on research. Thanks so much to everyone who considers giving. All donations are fully tax deductible and 100% of proceeds go to UNC research.

Have a wonderful holiday season!

How to Donate:

If you decide to donate, it would be great if you could email me at lmbutare@wheredidigetthislemon.com so that I can make sure UNC designates the money to our fund. :)

• Credit Card: https://www.medicalfoundationofnc.org/donate/online_donation.shtml

NOTE: **Make sure that you choose "Excellence Fund" under the drop-down menu for “Please designate my gift to.” In the “In honor of” field below that menu, write in “Butare-Smith campaign.” **(Otherwise the funds may be used for other parts of UNC Hospitals). Also note that you can donate to this fund even if you are an alumni of UNC. The “alumni” the form refers to is UNC Medical School Alumni, not UNC as a whole.

• Check: Make your check payable to “The Medical Foundation of North Carolina, Inc.” and write in the notes section “Excellence Fund, Butare-Smith Campaign.” Then fill out this form and mail it with your check to:

The Medical Foundation of NC
880 Martin Luther King Jr. Blvd.
Chapel Hill, NC 27514

• Bank Drafts: print out the form found here: http://www.medicalfoundationofnc.org/donate/autodraft.shtml and mail it to the address listed on the site. **Make sure that you choose "Excellence Fund-non alumni giving" under the question “Please direct this monthly gift to the following areas in these proportions:” In the “In honor of” field at the bottom of that listing, write in “Butare-Smith campaign.” **(Otherwise the funds may be used for other parts of UNC Hospitals). Also note that you can donate to this fund even if you are an alumni of UNC.
• To pledge to donate: fill out the pledge form and mail it to the address on the form. They will send you an invoice on the date you select. Be sure to follow the instructions above for how to designate your donation.

The Medical Foundation donation site also has a complete description of each way to donate, just make sure to follow our instructions for designating the funds.

Informative POTS video

Here's another great video that shows clearly what I was trying to explain a few weeks ago about the amount of heart rate increase involved in simply standing as a person with POTS. Very well done video. And the part with the dog at the end is one of the sweetest moments ever. :)

The Essential Chronic Christmas List

Wondering what to get your chronically ill friend or relative? Here's a list of items that I have found to be very useful over the years and would recommend to anyone with a chronic condition (especially, but not limited to, dysautonomia and POTS). So this is a list not just for gifts, but for general living everyday, all year. fyi, all the links are not to actual sites or products I have necessarily used, but they are similar to those that I have at home.

SmartWool socks: perfect for the winter for those of us with Raynaud's phenomenon or just cold feet in general. These are the only socks I have found that can keep your feet warm in almost any situation (although I must admit I have never warn them in the Arctic...)

Cute pillboxes: None of us enjoys carrying loads of pills around with us wherever we go, but if it has to be done, it may as well be done with style!

Klean Kanteen Stainless Steel Water Bottles: Since we POTSies must have water with us at ALL times, why not carry a permanent water bottle with you instead of plastic?

Seat cane: I use one from Magellan's that is super lightweight and indispensable for me. A must for any time you are going to the grocery store or shopping or even going on a short walk outside so that you have an instant seat when your heart rate gets too high.

Extended Height Rolling Stool: I use mine every day in the kitchen. You really need to measure your countertops to make sure that you get one that rises high enough to be useful (mine is 30"). I use it anytime I am in the kitchen chopping, mixing or washing vegetables, and if I need to go to a different part of the kitchen, I can simply roll over there rather than walking.

Shower chair: not the most glamorous of items, but an absolute must for POTSies who have a risk of fainting and getting extremely dizzy in the shower.

Arthritis Gloves by Imak: Nice for when the joints in your fingers feel swollen and on fire. These are the best ones that I have tried.

Paisley Cotton Bandanas: I have to use these all the time to manage my temperature fluctuations associated with my ANS dysregulation. These help to cool you down fast and get your hair off of your neck when you are having a crazy hot flash for no reason. Really any scarf will do, these are just examples.

Personal fan: Great to carry in your purse in the summer so that any hot flashes can be stopped in their tracks. Or, keep on on your side table during the summer...there are actually some nice looking ones out there now from Vornado.

Support hose: can be helpful with blood pooling in the legs associated with POTS

Neck pillow: Very useful for the car or airplane to keep yourself more relaxed and less likely to have muscle spasms.

Knee braces: If you have hypermobile joints, knee braces can be essential for days when your knees are really acting up. Wrist and elbow braces can also be helpful.

Blood Pressure Monitor: This one is fairly accurate, syncs up to your computer, and is actually nice looking so you can keep it out.

Journal/ sketchbook: a nice journal (for the writing inclined) or sketchbook (for the artistic types) can be a great outlet for anyone with a chronic disease.

crocs Mammoth Clog:these are great to keep your toes nice and warm during the holidays. Super comfy.

Tinted glasses/ pale sunglasses: Very useful for photophobia associated with dysautonomia; it can be very helpful when in a store with fluorescent lights.

Medical books: Books about the conditions that we have can be really helpful in fine tuning our treatments, or even to find new ways of coping with our diseases. See the list on the lower right of my blog to see some of the books that I find helpful.

This is just a partial list of things that people disabled with chronic illnesses might enjoy receiving. Other great gifts include driving them to appointments, making meals for them, helping to run errands, etc. Anything thoughtful that you do will be very much appreciated by them.

I'm sure that I'll think of more things that would be useful for chronically ill people. I'll add more items in later posts as I think of them. Have a wonderful holiday season and I wish you all good health in the year to come!!

Happy Thanksgiving

Happy Thanksgiving! I hope that everyone has a wonderful time this Thanksgiving holiday, with good food and good company. Try not to make yourselves too sick by overeating, and I promise to try the same!

Here's a good tidbit for those of you who do overindulge this holiday: try ginger as a therapy for nausea, sour stomach and gas problems. Traditional Medicinals has a great ginger tea (great as in great for a natural therapy, not great tasting) that can work wonders. Ginger Chews are also useful, and are much more palatable (don't work quite as well though). If you don't have access to these brands or just need a homemade option, here is a recipe that you can try to make your own ginger tea at home. Hope you don't need to use it, but it helps if you do! Have a great holiday everyone!

Ginger Tea
5 cups water
1 piece (6 inches) ginger, sliced into 1/4 inch slices
1 Tablespoon honey

Simmer water and ginger for 10-15 minutes, until desired strength (you may want it less strong to start with). Remove from heat and stir in honey. Feel free to add more honey to taste. If you make a stronger version, you can keep it on hand in the fridge and add hot water to it directly to make a tea when you need it.

What's Next?

I've been trying to figure out what topic to talk about next (since their are tons), hence my fun delay tactic for Halloween. ;)


I've decided that Treatments are probably some of the most important things to go over here, but it is certainly not going to be a short series of posts; so, I think I'm going to go over treatments but intersperse the posts with product reviews of useful items to get if you have a chronic illness or possible gifts to give sick friends. I may also have to do a Thanksgiving post of some sort b/c my husband Adam is insisting on seeing a "turkey lemon" of some sort created... I suppose I have to do as he asks every once in a while!

So look for posts on Treatments and Assistive devices over the next few months. Don't worry, it won't get too boring b/c I don't want to bore myself either. And if I'm having a tough couple of weeks, I may put "placeholder" posts about my dogs or something like that...

Stay tuned!

Are POTSies vampires?

I decided to dress up the lemon as a vampire for Halloween because most of us POTSies are very pale and often anemic! The pallor is a common symptom associated directly with POTS, most likely due to the decreased blood flow that makes it to the head and brain. The anemia is more of a anecdotal feature that many of us have, but has not been explored and may not be directly related to POTS. I am one of the ones that has both of these, although I am slightly less pale than I was a few years ago, most likely due to some of the medications I am on to increase my blood pressure. I do tend to be more awake at night too...hmm, does this mean that I could be a vampire and not just a POTSie? Something to look into...

So have fun this Halloween. Eat a few pieces of candy, watch a scary movie (if your heart can take it POTSies), and try not to scare all of the Trick-or-treaters with your pale faces! ;)