Thursday, September 10, 2009

Silver Ring Splints

Hey, everyone! I hope you had a great holiday weekend! I certainly did - it was my birthday! 28! We went canoeing, just a short trip around the water in the park by our place. I didn't do much paddling, but I sure did have fun. I even took my pup, Meeko! So many beautiful birds, the water was perfect, the temperature was great. It was a nice relaxing hour. (Since I don't get out much, this was welcomed! I had some problems with the POTS and the back pain was off the charts, but I am so glad I forced myself to do it!) We wrapped the evening up with homemade pizza and some friends. I even got to have a vegan, gluten-free, nightshade-free pizza - it was SO good, really!! I have posted pictures below.

Second order of business: Social Security Disability. I GOT APPROVED!!!! :) For the disability and SSI claims! A judge backing me up!? That feels so good! I will be doing a long post on all of this soon, but I just wanted to let you all know! Hooray!!!

Third: Silver Ring Splints!

(Video: My Silver Ring Splints)

As you can see, the ring splints are a blessing! They really have helped my hand pain and I love them. They do have a few downfalls, and I think it is important to do your homework before getting them - to really understand what they are and how they work - since they are SO expensive.

As for the insurance questions, I wanted to post info on how I got my insurance company (the one I had at the time) to cover the cost of the splints. There are two things you will battle when trying this. First, the companies that make silver rings splints don't deal with insurance. They won't take it, won't try to work with you. They simply don't accept insurance. Secondly, the ring splints are not typically covered by insurance companies anyway. You have to prove to your insurance company that you absolutely need the ring splints and that you have exhausted all other resources first. They usually want you to try plastic 'oval 8' splints first. If you are like me, these are an okay substitute (and all kids will need, since their fingers will outgrow the silver ones - and with the cost you don't want to pay for these more than once!) - they do help a little, but they also cut my skin often and never fit well enough to stay on and do their job. So, how do you get around all of this? Here is how I did it (I am not telling you to do anything, nor I am telling you to break laws. What I did wasn't illegal. I don't condone or promote illegal acts.):

  • Step 1. These are prescription splints. That means you must have a doctor write you a script. So, get yourself to the orthopedic doctor, hand therapist, etc. First, I went to the orthopedic surgeon that deals with my upper joints (like shoulders and wrists). He said he wouldn't write me a prescription, that I didn't need the splints. Really, I think he didn't know what they were. He is really nice, but deals more with sports injuries than connective tissue disorders. So, he sent me along to the hand therapist (they work together diagnosing and treating, same office). My hand therapist took one look at my fingers hyperextending/subluxing and got out the oval 8 splints. I was sized and wore those for a few months (the plastic ones). They cut my fingers and were uncomfy, but I wore them to prove to her and myself that they helped. She also made me a horribly hideous thumb splint out of a Play-Doh like material (that was heated and hardened) and it fastened to my hand with velcro. This kept my thumb in place. Once she saw they were helping me, she agreed to do the sizing for the silver ring splints. She talked to my orthopedist and he had to write the prescription for 20 ring splints (I needed them for every joint on all of my fingers). Then, she had to order the sizing kit from the company. This kit does cost the doctor money and sometimes they can be hesitant about things like this. In addition, you will need copies of ALL of this paperwork: your prescription, your sizing charts, etc. - save these for step 3.

  • Step 2. Next on the agenda: Finding an 'orthotics and prosthetics company' to be the 'middle-man.' This is where things get tricky - but also the part that saves you the money. You have to do research. This will take time and effort on your part. You have to locate a company that works with (or is willing to work with) the silver ring splint company and your insurance company. They will be doing this for either a small fee or out of the goodness of their hearts, as they won't be getting much from you. Find O&P companies. Call them and ask to speak to a supervisor (this is a big help!). Ask if they have ever ordered anything from Silver Ring Splint Company (or company of your choice), or if they would be able to. (They have to be able to bill the correct codes, and most companies you speak with won't be able to do this.) If no one in your area is able to help, contact bigger companies. If no one is able to help you at those, branch out. Call small companies in other states. Big companies nationwide. Keep calling and calling until you find someone. Explain to them that they will act as a middle man. Tell them about your EDS and the problems you are having. This took me two years - to track down someone that would be willing and able to do this. It is work on their part that they aren't getting paid for, essentially, and so it will take a person who is caring enough to want to help - they are out there. One EDSer I know was able to find this person/company in a month. One a little longer. Me, two years. But - unless you have $5,000 laying around for rings, it is the best bet! There is a diagram below to refer to, if you need help explaining this circle to the O&P company. NOTE: you must find a company that works with your insurance. To get a listing of possible companies, contact your insurance and ask them for the names and numbers of providers in your coverage plan for Orthotics and Prosthetics.

  • Step 3. Get that paperwork from step 1 and send it to the O&P company. They will send it on to the Silver Ring Splint Company. The Silver Ring Splint Company will bill your O&P. Your O&P will bill your insurance. Your insurance will pay your O&P. Your O&P will pay Silver Ring Splint Company. Silver Ring Splint Company will mail your rings to the O&P. They O&P will mail the rings to you. Confused yet?! :)

  • Step 4. Try your rings on. Make sure they fit. They need to be snug. If your hands get cold, and your fingers shrink, you don't want your rings falling off (trust me, I have had several slip off already this way and officially have lost one). Try them on carefully. If you so much as scratch it, you can't return or exchange it. Make sure you are SUPER happy with the fit. If not, you need to go back to your hand therapist/ortho and have them re-size you. Then, you have to go back through the process with the O&P. Sounds trying, and it is, but it is worth it if you want your rings. The last thing about aesthetics I wanted to add: they do tarnish rather easily. They also may turn your skin colors. My fingers were green under the splints for a while, then black, then it went away. The rings are very tarnished now. I clean them occasionally, but the company recommends taking them off to shower, etc. I need them for things like that, so I never take mine off, I just deal with ugly colored rings! (The only ones I don't wear all the time are the large thumb ones.)

  • Step 5. Enjoy! :)

Silver Ring Splint Company is who I went through. I like their rings. The large thumb one with the bracelet is fairly new and wasn't in the catalog, but it was on a flier they sent with the catalog.

Cindy Garris, Owner
Phone: 800-311-7028 or 434-971-4052
P.O. Box 2856
Charlottesville, VA 22902-2856, USA
Fax: 888-456-8828

DigiSplint - Canada
(This company lost a copyright infringment suit filed by Silver Ring Splint in 2008 for web design, just an interesting tidbit!)

Murphy Ring Splints - can't buy directly from them, they use distributors.

P.S. I get SO many compliments on the metal all over my hands! People think they are just crazy jewelry - and most people LOVE them! I take that opportunity to explain that they are medical and why I wear them. I figure, 'what the heck, more awareness, right?'.....

Homemade rice crust pizza dough with homemade
pesto, squash and onions from the farmer's market! Yummy!

I love my Meeko!


Friday, September 4, 2009

Nominate EDNF for $10,000 Charity Award

While 'The Christie Cookie' doesn't offer cruelty-free cookies, they are giving money away to the charity with the most nominations in their 25th anniversary contest. Since I don't have to buy their cookies in order to nominate (and therefore am not contributing to suffering), I don't mind nominating EDNF and passing this along as well. EDNF (Ehlers-Danlos National Foundation) is struggling to maintain enough funding to stay active, and while I don't always agree with their politics & ethics (they support animal testing, when there are more accurate, cost-effective and reliable ways to do medicine - like NDRI's EDS research using actual tissues donated from humans with EDS), they are the largest group of people fighting for EDS awareness in the states, and I fully support EDS awareness. With that being said, I am a member of EDNF and I recently received a letter from them asking for people to help in any way they can, financially or by asking others to become members ($25 a year). They provide a plethora of information (and members have access to the forums, which can be really helpful) on EDS, at last count they had about 10,700 people using the site - with less than 1,000 paid members. To help them, which I do think is important, we can all do one of two things (or both):
  1. Become a member of EDNF if you aren't already. Ask friends and family to join as well. This will increase their knowledge of EDS, raising awareness, and help fund the organization's efforts. Visit EDNF for membership info.
  2. Nominate EDNF to win the $10,000 that this cookie company is giving away. (This is free and easy.) Visit the nominations page here. (You don't have to give your personal info.)

That's all. Hope you are well!
Have a happy & safe holiday weekend!!

Wednesday, September 2, 2009

Question of the Day

I will be posting a 'question of the day' occasionally - many random topics - and I would love to hear from each of you. Please make sure to post your answer to these in the form of a comment below the post (and not an email to me), as these questions/answers are meant to help us all.

Today's Question:

How do you combat stress?

If you are having a really stressful day or week, what are some natural ways you deal with it? What is your favorite relaxation technique?

Post your answers in a comment below - share them with others!

Today is a high stress morning for me, as I am off to my hearing with the judge for the disability case. I need to calm down beforehand, so I am going to do some breathing exercises outside (it finally has cooled off a bit!) before I head out. This helps me focus and unwind, just a bit. What helps you?

(This will be a category on the right side of the blog. You can browse through past 'Question of the Day' entries and see what others think about these topics!)


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Sunday, August 30, 2009

My New Wheelchair!

(Photo: Me & my wheelchair)

As you know, I was really bummed that I lost my insurance and with it went my wheelchair. For quite some time, I searched for one that would be a good replacement - and I was going to settle and just get a 'hospital' style wheelchair - you know - the big, ugly, heavy, navy blue plastic ones. The problem with these sorts of chairs, they don't fit in my car (not even the trunk) and I can't pick them up to load/move them. The last time I picked up my old wheelchair, I dislocated my shoulder. So, I was unhappy and chairless.

I remembered watching the Discovery Health Channel EDS clip with the Martial Arts instructor, Alberto Friedmann - and in it, he had a wheelchair that was really lightweight (or looked it), with removable wheels. I thought to myself, 'that would be perfect!' - but I had no idea what kind of chair it was. So, I called Alberto. He was really nice, and though it was a strange call, he obliged me and gave me all the info on his two wheelchairs. He had a Quickie GTX and a Tilite wheelchair. He said the Quikies were really nice, quality chairs - and a little bit cheaper than the Tilites. His GTX folded up really small, would fit in an overhead bin of an airplane. But - he said - if I would have a problem lifting the chair, the Tilites were even lighter than the Quikies. So, it was settled. I would look into both. I mean, how much was the price difference? Well, it hit me hard. Not the price difference, but the price - period. Most of the chairs were anywhere from $1,000-$4,000 dollars, some even more. Yikes! No job, no income, disabled - no money coming in. I wasn't going to be able to afford a nice wheelchair. Heck - I couldn't afford a new 'ugly' hospital chair (they were between $500-$1,000!). What would I do?

I turned to Craigslist. And I waited. And waited. And then logged in to see 'Quikie GP Swingaway Youth/Young Adult Wheelchair.' The photos were too good to be true! The wheelchair was very similar to the ones I was looking at on the web - and had lots of added features - they had purchased a lot of accessories and parts that made the wheelchair even more functional. And - the price - $50. Five-zero. What?! I started emailing with the owner and chatting about all the things they added to the chair. When they purchased it new, the chair and all parts came to a total of $3,400!!! But, what did 'youth' mean and would I fit into it?

I talked at length with the woman who was selling the chair. The wheelchair belonged to her daughter, and she was needing a different kind of chair - something even fancier. The girl was in her early twenties and had this chair for all of her late teen years. She has spina bifida and spends her waking hours in a wheelchair. She has no function in her legs. None. The family was just looking for someone to take the chair who would really get good use out of it - and they were only asking $50 to just help pay for some more medicine for the girl. She was recovering from a stage 4 pressure ulcer. (I had to google that, and was really saddened and horrified - it looks SO painful!) I went and checked the chair out - it was perfect. It fit like a glove, just needed a few minor repairs, and was right in the budget! I would just need to buy a cushion (and nothing too fancy). I was so touched by these people and so overjoyed. I got a chair, to meet a really nice couple, and I got a nice reminder that I don't have it so bad - I still have legs that work. Though they cause me pain, I can still get around. Though I can't easily walk, whether from the joints or the POTS, I can still walk. I will make it. Today is only today, and tomorrow is a new day.

I am more mobile with my new wheelchair. I can do things like shop for the day with my mom, get groceries when my POTS is out of control, and get through the airports with ease. The chair fits in my trunk, and when it is taken apart, it is light enough for me to pick up - it can still be awkward, but so far I haven't dislocated anything loading it into the car! Hooray! For those of you who have the money and need a wheelchair, I really recommend looking into the Quickie and Tilite brands. For those of you who have good insurance, you could try those as well. For those of you like me, just keep on looking and don't give up. You never know what will pop up on Craigslist, what stories you will hear, and what you will be reminded of. :)

P.S. These wheelchairs are a lot easier to push yourself around in. But - we EDSers should know better! If you can avoid pushing yourself in a chair, do. You don't want to ruin your upper body to help your lower body! :) Pushing oneself can lead to dislocations, subluxations, bruises and long-term permanent damage. (And, I know! I stupidly tried to push myself around. My wrists rebelled and my shoulders screamed. Don't think I will be doing that again!)

P.S.S. Yes - I do require help to pull apart the wheelchair and put it back together (and, if help is handy, they certainly do the lifting and put it in the car, etc.) - AND - I get to schmooze with people and convince them to push me around (this does work - mostly it is friends or family - but I did convince the drummer from my favorite band to push me around recently!)...the wheelchair makes my 'invisible disease' a little more visible, which makes me people more apt to help (and while it shouldn't work that way, we all know it does). The only problem lies on the days/hours I am alone - which are many each week. In those cases, it seems best to just stay at home and not move around a lot!

Sitting happily

Assembled - Ready to go

Handles Removed

Footrests Removed

Wheels Removed

Back Folded Down

Wheels are pretty lightweight

Awkward but manageable!

If you have EDS, you may not need a wheelchair. But, there may come a day when it makes things a lot easier. If you have POTS, you may not be bad enough to need one, you may get to that point, or you may be too bad to even sit up in a wheelchair. Everybody is different. We can't judge everyone who has EDS or POTS - everybody's story is different. But, it is nice to know we are not alone. We are not the only person in our late twenties having to seek out what kind of wheelchair will work for us. We are not the only person struggling with the complications that these illnesses plague us with. We all are unique, beautiful and able to make it - with the support of our friends, families, and perhaps a nifty wheelchair.


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Friday, August 21, 2009

Follow-up to Agave Post, Knee Info, Great Book

Hi! Hope you all are well today! For those of you still interested in learning about sugars (the kind we ADD to our foods & the kind that are naturally occurring in foods), please read on! :) (Thank you for all of the great comments and emails regarding sugar/agave!)

I just wanted to add a bit more to the agave post and follow up with a book that I have found really useful. First off, for those of you who were as concerned as I was when learning that agave is just as processed as the rest of those bags of white sugar in the supermarket, I hear you! While I know sugars are not something that should be added to my diet anyway, I did feel like the slight stir of liquidy nectar into my foods was at least coming from a less processed source - especially when I purchased the 'raw' agave nectar. Well, not so much! We learn something new everyday!

Since bringing up sugars, I just wanted to re-post my opinions on adding them to our diet, to give you some more info to work with on sugars, and to clarify just what those 'raw sugars' are that you buy in the store. First, sugars, the kind we add to our foods that aren't naturally occurring (like the fructose in an apple) - in my opinion (and that of many health gurus) - ARE an addiction. In addition, they wreak havoc on our bodies and cause all sorts of health issues (which we EDSers and POTsy people don't need any more of). From hypoglycemia (low blood sugar) to diabetes (yes, type 2 can be brought on by eating sugar year after year), along with many others, we should definitely not be putting added sugars into our bodies. The only sugars we should be using are those from whole fruits, or by consuming glyconutrients (more on these later).

If you are like me, and have any sort of addictive personality problems, giving up sugars is certainly not an easy task. I mean, over the years I gave up meat, dairy, eggs - then gluten & nightshades (to see if it will help me), and also anything artificial and any preservatives - BUT - I still considered using sugars - even agave? I mean, look at the juxtaposition: vegan health nut curls up with added sugars! - it just doesn't seem right! Ha! Well, that is the problem - it isn't. But, I, like many of you, shivered at the thought of giving up this highly addictive substance, thereby accepting agave as a healthy alternative. Well, I think I am ready to face the truth. If I am really going to do what is best for my body, I just need to give them up. Take it on like I took on giving up alcohol, gluten, or processed sugar (umm..wait...agave is processed, too!). I am trying to take on my health issues by consuming what will help and not hinder; therefore, I cannot eat added sugars - especially ones that 'claim' to be healthier, but really are just as processed (heated, enzymes added to them, etc.). I mean, to be basic, sugars raise blood sugar. Raised blood sugar can cause inflammation. Isn't inflammation some of what I am trying to reduce? What about those spasmed muscles? The red hot pain that accompanies them? Giving up sugars has the potential to help this. And, if it doesn't, at least it will help prevent many long term health issues that can arise from consuming them. If agave can cause diabetes as equally as white sugar can, it is out. That is where I currently stand. (I can't say I won't miss it - since I seriously have an addiction to sugar and my favorite food group is dessert, but I can't eat them if I truly want to eat healthy.)

For those of you who want to get healthy - you should ponder this, too! Do your own research. Read, read, read. Explore. Try. For those of you not interested, at least take into consideration what you are putting into your body. If you are eating it, you should know what it is. If you do still choose to eat sugars, just beware that you may be misled by marketing (as we all know!) - there is no such thing on the shelves as raw sugar. Raw sugar contains contaminates and it is illegal to be sold in the U.S. Sugar in the Raw brand sugar is not raw at all. It is just sugar crystals that are sprayed with molasses to turn them brown. There is nothing raw about that, and nothing healthy either. You could eat white sugar and it would give you the same benefits - none. Maple syrup is highly processed and can actually contain many toxins. Agave is processed. Honey, at least, is a naturally occurring substance; but, may be against your ethics to consume it - and it still is an added sugar with a high amount of glucose (so very high on the glycemic index).

I found a fantastic article on agave and many other sweeteners. I definitely recommend reading it in its entirety: The Truth About Agave Syrup by John Kohler. In it, Kohler writes about agave, sucanat, stevia (and why you shouldn't use the white powder, but the green dried herb, powdered, instead) maple syrup, yacon, etc. It is a raw food article, and so it does mention a lot about the cooking temperatures of foods (raw foods are those which are not cooked, or cooked below 118 degrees F to maintain their enzymes and nutrients) with reference to these sweeteners. It does make a great case against consuming added sugars, and instead eating whole, fresh fruits and dried fruits. He even mentions making a syrup out of dried fruits which is something I do and love. If I am going to make a smoothie in the morning and I want it extra sweet, I will soak a date or two in water the night before - then, I add the date and water to the blender - this is a great sweetener for other things as well.

I found an older, but very relevant posting from Renegade Health, part of the original discussion on agave from them - if you watched the other two videos, you should watch this one too. Also, he mentions the knees, connective tissue, etc. He says that adding things like vitamin C and sulfur to your diet are important - pay attention! - this is already something I do and firmly believe in. You can see my list of supplements for this info. MSM (which is sulfur) and vitamin C are part of my daily regimen.

If you are interested in good sugars, you should check out a book called Sugars that Heal: The New Healing Science of Glyconutrients by Emil I. Mondoa, M.D. and Mindy Kitei. It is fantastic! I am about halfway through it, and when I am done, I will be doing a post on it - check back! It is based on the eight essential sugars (saccharides) that are needed for our bodies to function properly, fight disease, heal, etc. I know - sounds like the opposite of what I talk about in this post! But, when you read, you will see just how different this is. Things like polysaccharides found in some mushrooms can do wonders for our bodies. Great book so far!

Okay - that is all my talk on sugar for now. :) As always, do what you feel is right for you - but continue to learn and grow. We beings are so amazing - and we can always keep doing more and doing better. Have a pain-free day (as pain-free as it can be!) and enjoy your weekend!!


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Tuesday, August 18, 2009

Saying 'NO' to Agave Nectar

When looking into what sweeteners I should use in my 'healthy' diet, I decided that added sugars were a big 'no-no,' but I found that agave nectar was low on the glycemic index (so it wouldn't raise my blood sugar a lot, which can cause pain and inflammation) and decided it would be the only thing I added into my diet on occasion (that once in a while cup of coffee, to sweeten up some roasted veggies for fun, etc.)...but, I wasn't convinced that it was 'good for me' and have heard there is controversy over whether or not it actually might be harmful.

I decided to do more research, and thankfully, at the same time, showcased their stance on agave nectar (and then a great, more in-depth follow-up video was released the following day) - and these confirmed what I was finding. Agave is not something I should be indulging in! In fact, I am eliminating it from my diet, along with all of the other sweeteners. I will only use things like dried and fresh fruit for my sweetening needs. Feel free to comment, or to check out the raw blog I love (I am not raw, but do eat a lot of raw foods): Renegade Health!

The decision is not based solely on Annmarie and Kevin's blog, but I do give them a lot of credit - they are typically 'right-on-the-money' and in line with the way I view things. They reference nutritionists, doctors, holistic health gurus, etc. I don't always agree with everything they talk about, but I do a lot of the time (90%?), and this is one of them. :)

No more agave for me!

(The first video gives some brief info on agave, the second one goes into more detail. I recommend watching them in order.)

(Video: Renegade Health on agave nectar, take two, *video one is not included in my post*)

(Video: Renegade Health on agave nectar, take three)

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Monday, August 10, 2009

Responding to your Comments and Emails

Hey! Hope you all had a wonderful weekend.

Thank you so much to everyone who has commented on my posts or emailed me! I really appreciate all of the support, the advice, reading everybody's stories and bonding with people who truly understand what it is like to have disabling diseases. You have made my life so much better! Please continue to post comments, questions, ideas, etc. And, you are more than welcome to email me as well.

I do take the time to write everyone back and to respond to all comments - this is very important to me. I do receive a bunch of emails and comments, though, and it does take me a while to get back to everyone (especially when I am having a 'pain day') so please understand that I will respond, it just may take some time! Also, if there are any comments, requests, concerns that I can reply to more in-depth in a post, which will allow everyone to benefit, I will do that as well (anonymously, of course!).

For those of you who comment on the actual posts (which is great, I love this!), you can now receive a follow-up email if I reply, or anyone else replies. I think this is a great tool, as it will allow more of a 'forum' for discussion on a certain topic or post. If you wish to have replies to your comment sent to you, please click the box that says 'email follow-up comments to [your email address]. You will see this form when you click 'comments' at the bottom of each post.

Thank you again for your contributions! Peace and love to everyone.

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Saturday, August 8, 2009

Disability Court Date!

Just a quick update on my case:

As many of you know, I have been trying to get approved for Social Security Disability for a year and a half now. I was denied twice by the state of Virginia (Disability is a Federal program, but the approval process is through the State), and told I am not disabled and perfectly able to hold a full-time job. This, of course, is far from the truth. Even my doctors agree that I cannot work at all. How can I, when I can hardly walk, can't stand up without falling over, and am in pain all of the time? Exactly! I got a lawyer after my first denial, and we were denied a second time. Then, we appealed the case and have just been waiting for a hearing date (to get a judge to reevaluate my case).

Just last week, my lawyer was able to secure a hearing date! I will be in court on September 2, 2009. Upon approval (PLEASE!), I will also be eligible for Medicaid, and then Medicare. The Disability and Medicaid/Medicare would help so much with paying bills, allowing me to get to the doctors, pay for medicines and supplements, etc. My doctors are backing me 100%, and they all have filed papers to help me. So, it will all be up to the judge! Only time will tell, but I am keeping positive and I have a good feeling about all of it.

When all of this is over, I will post info on the how I applied, the process, and any extra info I have that might help any of you. It is a very long, complex, frustrating application process - that seems very hopeless most of the time. Hopefully, mine will end with good news, but I will update all of you either way.


Thursday, July 23, 2009

POTS (Postural Orthostatic Tachycardia Syndrome)

Postural orthostatic tachycardia syndrome (POTS) is a condition of dysautonomia, and more specifically, orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. This is often, but not always, accompanied by a fall in blood pressure. Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 44 and 60%, respectively. Patients with POTS have problems maintaining homeostasis when changing position, i.e. moving from one chair to another or reaching above their heads. Many patients also experience symptoms when stationary or even while lying down. Symptoms present in various degrees of severity depending on the patient. POTS is a serious, though non-life threatening, medical condition that can be severely disabling and debilitating. Some patients are unable to attend school or work, and especially severe cases can completely incapacitate the patient.

(Great video on POTS symptoms and what is is like to live with POTS)

Dealing with one chronic illness is bad enough, but dealing with two can be unbearable at times. I have been dealing with EDS all my life, each year adding on new symptoms and more pain. Along with the symptoms of EDS, I have been dealing with my 'heart problems'...that was the term I used to describe the symptoms of my undiagnosed POTS. They included severe palpitations, dizziness, chronic fatigue, nausea, tightness in my chest, and passing out.

The symptoms started in my early teens, but weren't what I considered severe - some palpitations, some migraines, some fatigue. In my early twenties, the symptoms started to get worse. I had such severe migraines that I was in a migraine study at UCLA, in which they labeled the cause of my migraines 'undetermined' and said they couldn't help me anymore. I had bouts of passing out quite often, sometimes these accompanied the migraines and sometimes they didn't. I passed out at random times in random places: at home, at work (one time, when I was working for an airline and was checking in customers at the gate, I collapsed and caused a bit of commotion from the passengers and my coworkers!), even driving in the car (yes, scary!). The doctors I was seeing at the time had no clue what was wrong with me and some said it was all just in my head. My occasional heart palpitations became more frequent. I was exhausted more and more of the time. The symptoms were getting pretty bad by 2005.

When I went to Johns Hopkins in June of 2005 and was diagnosed with EDS, I mentioned these symptoms, and the doctors said I probably had POTS (I didn't know what that was at the time), but that it didn't seem bad enough to cause concern, and I didn't need to do anything for treatment other than drink lots of water and eat lots of salt. They said they weren't going to do any formal tests at that point in time. For the next two years, I just took their advice, figured I probably had POTS, but there wasn't anything I could do, and that was that.

From 2005-2008, my symptoms got pretty bad. I was having a hard time mustering up energy to do anything on daily basis. I was dizzy and lightheaded 100% of the time. I was nauseous always. My heart raced all the time, and when I would have a really bad 'episode' (what I called my 'racing heart'), I would be worn out all day. Some days, I didn't even know how I was going to work, let alone get up and move around the house. I knew something was really wrong, so I started to investigate that acronym the geneticist had used: POTS. Postural Orthostatic Tachycardia Syndrome.

Finally, in 2008, my symptoms got so bad, I knew I needed to seek treatment and get a formal diagnosis. And, I was hoping that I also would find some help. I contacted my general doctor who sent me to a cardiologist. They had me wear a halter monitor to watch my heart rate for 30 days. It had electrodes that attached on my chest and a monitoring device I attached to my waist on my pants. I had to press a button on the device anytime I felt my heart palpitating, and this would record an EKG. Then, I had to call the monitoring center once a day and transmit my EKG over the phone (a very strange thing!). A few times, the people from the center called to make sure I was okay, as they said my monitor recorded my heart beating at dangerously high levels! When the test was over, it was concluded that I had no arrhythmia's but I did have severe palpitations (so my heart raced really fast a lot of the time, but the beats weren't abnormal). After this, they sent me for a tilt table test. My test was positive for dysautonomia and they said I had POTS. During the test, my heart rate went up to 170! My blood pressure fell to 50/30. I did pass out.

What is POTS? What is it like to live with POTS? Does it go away? Is it curable? What are the symptoms?

POTS seems to be different for different people. For some, POTS is something one gets as a teen and outgrows it by their early twenties. For others, and I am finding this to be the case for those who have EDS and POTS together, it gets really bad around the mid-twenties and just continues to get worse with age. My symptoms are pretty severe now, at almost 28, and they make my life rather difficult on a daily basis. When I move, whether lying to sitting or sitting to standing, bending over to reaching above my head - and sometimes movements so slight as turning my head or moving my arms - my blood pressure drops, my heart rate goes way up and I become dizzy, things get black, and sometimes I pass out (which is inevitable if I don't immediately sit back down). I can't stand for long periods of time, like at a concert or in line at the grocery store, and more and more I am having a hard time standing at all. I am always tired, fatigued, have no energy, and this is caused by my heart doing overtime all of the time. I have likened it to 'running a marathon 24 hours a day, while not actually doing any physical activity.'

There is no cure for POTS. There are some forms of treatment, but nothing that takes away all of the symptoms. I tried the 'lots of water and salt' plan, which did nothing for me (though I continue to consume lots of water and salt just in case). I tried medicines. There are beta-blockers, steroids that make your body retain salts, medicines that keep your heart rate up, medicines that keep your blood pressure up. I went through the rounds. If 10/10 is feeling perfect, the closest I got on medicines was a 4/10. My endocrinologist exhausted all resources she and her team of doctors felt they could, and so I was stuck with a 4 out of 10. That was improvement, so I took it, but when I lost my insurance, I had to stop those medicines (couldn't afford at $1300!). Some people find relief on the meds, some don't. Some find just a little. That was me - just a little bit of help. Now, with no meds and no other choices, I currently am dealing with the full range of symptoms. I do a lot of resting, have a hard time being fully mobile, and am in a wheelchair if I need to go out and do things that require a lot of walking or standing, or on days I have no energy. Mostly, I just don't do a whole lot.

POTS, in itself, can be disabling. EDS can be disabling as well. Put them together and you have me - a young, healthy-looking woman on the outside, who is really ill, battling 2 syndromes that leave me in a lot of pain and thoroughly exhausted. It is very hard to convey this to friends and family. How do you explain your fatigue and pains, how do get across your 'invisible disease' without seeming lazy and like you are just complaining? Most doctors don't even know about the two rare disorders Ehlers-Danlos Syndrome and POTS. I was diagnosed with both, by medical doctors, and yet I still don't get the respect/sympathy I would if I told someone I had Parkinson's, breast cancer, or any other random number of well-known diseases. Not that I discount or discredit anyone's medical condition whatsoever; more so, I find it very hard, very frustrating that all diseases aren't given equal weight. Most people still don't understand. They don't believe me when I tell them I am sick. That is why I have chosen to dedicate time to increasing awareness of EDS, POTS, and bipolar disorder (another post). As the saying goes, 'invisible diseases suck!' - and, yes, they do. So, lets do something about it.

And, to keep a bit of humor here, as Elliot said on the TV show Scrubs, 'If you want sympathy, get a disease people can see!' (Just kidding!)

(Video: Trailer for Changes: Living with POTS documentary)

Symptoms of POTS outlined by Dysautonomia Information Network

  • Fatigue (which can be disabling)
  • Sleep disorders (can cause unrefreshing sleep and an increased need for sleep)
  • Headache/migraine
  • Myofascial pain (characterized by regional muscle pain accompanied by trigger points)
  • Neuropathic pain
  • Dizziness
  • Tachycardia
  • Exercise intolerance
  • Clamminess
  • Anxiety
  • Flushing
  • Postprandial hypotension
  • Blood pooling in limbs (can make legs feel heavy and appear mottled and purple in color)
  • Intolerance to heat
  • Feeling cold all over
  • Low blood pressure upon standing
  • Cognitive impairment (may include difficulties with concentration, brain fog, memory and/or word recall)
  • Narrowing of upright pulse pressure
  • Cold hands
  • Hypovolemia (low blood volume)
  • Chills
  • High blood pressure
  • Hyperventilation
  • Numbness or tingling sensations
  • Reduced pulse pressure upon standing
  • Low back pain
  • Aching neck and shoulders
  • Noise sensitivity
  • Light Sensitivity
  • Disequalibrium
  • Arrhythmias (irregular heart beats)
  • Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses)
  • Easily over-stimulated
  • Feeling full quickly
  • Feeling "wired"
  • Food allergies/sensitivities (some foods seem to make symptoms worse)
  • Hyperreflexia
  • Irregular menstrual cycles
  • Loss of appetite
  • Loss of sex drive
  • Muscle aches and/or joint pains
  • Swollen nodules/lymph nodes
  • Polydipsia (excessive thirst)
  • Weight loss or gain
  • Feeling detached from surroundings
  • Restless leg syndrome

(Video: A Demonstration of Dysautonomia POTS)

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Saturday, July 18, 2009

Social Security has Dance Party & I Still Have No Assistance

The Social Security Administration had a dance party last week, at the cost of tax payers. The cost? $700,000.

Yep, you read that right.

[Video: ABC15, SSA partying it up in Phoenix at OUR expense.]

Call it a workshop, conference, or whatever else you want. I call it a waste of money and extremely frustrating. We are in a deficit. The Social Security Administration is a government organization that is supposed to be spending money helping out Americans, including those with disabilities. Instead, they are taking $700,000 to boost employee morale, that money coming from tax payers' pockets (this is not a private company using private funds to host a conference - they are taking OUR money to pay for this) - instead of using that money for what it should be used for. Poverty? Medicare? SSI? Disability?

Where is my money? Where is my assistance? I have been fighting my disability case for a long time, all with no answers as of yet (other than 'you are not disabled'), and they are out spending a huge amount of money partying in Arizona. It infuriates me.

What can $700,000 do? Well, for starters, it could pay Social Security Disability benefits to someone at $20,000 a year for the next 35 years. Or, it could pay 50 people $1,200 a month for an entire year. With hundreds of thousands of people across the nation awaiting decisions on their disability claims due to piled up backlogs from lack of funds, it seems a bit ridiculous for the SSA to just toss this money around like poker chips in a casino.

I am all for employee parties and 'training' conferences, from private companies that have funds for them. When I worked for Southwest Airlines, trust me, when the money was rolling in for the company, we had plenty of them. The SSA is not Southwest Airlines. My livelihood, my medical care, and my future depend on them actually doing their job, treating my case justly, and listening to my doctors when they say I have disabilities that make it too difficult to work enough to care for myself. I need the SSA to put their money where it belongs. And, the general public deserves to have their taxes put to use to help our fellow countrymen, and not to for the SSA to play dance party at the cost of $700K.

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Tuesday, July 14, 2009

Need a Heating Pad or Ice Pack?

(Photo: ThermiPaq on my lower back)

About two and a half weeks ago, I woke up in bed to the most horrible pain ever. I thought to myself, "this is worse than the pain from my gall bladder surgery!" - seriously. My neck and back hurt so terribly I couldn't move at all. Over the next two days the pain got so intense that I had to be helped all around the house - if I actually needed to move - and 99% of my days were spent sitting in an upright position moving as little as possible. This was putting more pressure on my hips and lower back, and they were becoming sore, but it was the only way to stop the excruciating pain from jolting up my neck and shoulders. By day 4, my right arm was completely tingly. It ached. I was screaming, literally, in pain every time I moved. I was in tears for hours. Pinched nerve? I mean, I had experienced what I called 'pinched nerves' before, and I had experienced this shooting sensation, but never to this degree. It was all I could do to not just want to close my eyes and not wake up.

In comes my mother, my savior. She offered to help me get to the chiropractor, well - to pay for the visit - and I had to drive there myself (she lives 3,000 miles away from me). Yikes! (That was a chore, to say the least!) I know, chiropractors and EDS don't mix well. But, something had to be done. And, so I went. Two dislocated ribs. 3 vertebrae subluxed. My hip out so much that one leg was 3 inches shorter than the other. All from rolling over in my sleep or whatnot. Lovely!

The chiropractor was a little familiar with EDS (I gave him fair warning when making the appointment), and it could have been from him just reading up on it before I came in (go doctor!) - I was thrilled. He knew what the typical limitations were (or that my stretchy body had no limitations, so he needed to enforce only what normal mobility would allow). And, he adjusted me over the course of a week. After that first session, I could actually walk without bawling my eyes out. I mean, it still hurt like no other, but it was a tiny bit better - I'll take it!

After two weeks of healing, and several visits later, I seemed to be doing much better. Then, Sunday, I woke up and turned my head in bed. I heard a bunch of crackles and snaps and then instant pain. Oh no!! This time it wasn't near as bad, but as the day went on, I was back to hardly moving at all. By Monday morning, it was apparent I needed to get back in. The vertebrae had slipped back out. But, the hip was better. And the lower back, where I have scoliosis, was better too. Only slightly out of place. But, those vertebrae! Ack!

Apparently, I should expect this to keep happening. Stretchy tissue leads to things slipping. I know this. But, once they are more stretched out, it is easier for them to keep slipping out. So, I am now told to be very guarded in my movements. If it happens again, to lie on a bed and drape my head off the edge. This will provide, roughly, 12 pounds of weight (my head) acting as a traction device to try and relax the muscles and perhaps let the vertebrae slip back into place. That will be first on my agenda next time. So far, the ribs seem to be staying in place. Little bit of slipping, but not back out like they were. The right side ribs seem to be very temperamental - they tend to slip out frequently.

(Photo: ThermiPaq on my knee)

So, I am in recovery again. Just able to move around the house a bit today. I can't lift a whole lot or bend over, so sitting upright all day has made my lower back hurt. As I was sitting here with a heating pad on my lower back, I got to thinking. I really like my heating pad. Perhaps it could serve you well too. The best hot pads are the ones in the chiropractor's office or the physical therapists use them sometimes too. They are huge. They are moist heat. They work nicely to relax muscles. But, I don't have them at home. And, they need to be heated in a pot of boiling water. When I am hurting, I don't have the time or energy to do that.

A few years ago, I found a heating pad at Target that I really love. I have been happy with it since I got it. You can heat it in the microwave. You can also put it in the freezer. And, it stays HOT for about a half an hour. Seriously. I don't like electric heating pads, so this is a perfect alternative. It has some weight to it, which I actually like. It is like heavy heat sitting on my problem area, seems to penetrate better. It also is very malleable and will conform to whatever body part you need it for. I use it for my knees, back, shoulders, ankles, etc. I have one of their bead ones and one of the ceramic clay ones. I like the clay one the best. Anyway, I am going to rest, and you can check out the rest of the info on their site (I posted a little from their site below).

Note: You can buy them all over - Target, Walgreens, etc. Happy heat!! :)

Thermionics Heat Therapy Products

  • "TECHNOLOGY. Thermionics pain relief products are unlike any other therapy delivery system on the market today. What makes these products superior is our patented Theramics (Thermal Ceramic) compound, which was developed by a former NASA engineer. This revolutionary technology utilizes a synchronized blend of all-natural, ceramic clay and non-toxic oils to create the ideal thermal transfer source. Theramics is the only product that capitalizes on the efficiency of radiant energy to create deep penetrating, therapeutic pain relief. This unique compound is safe, easy to use, and highly efficient in the treatment of a wide variety of pain discomforts such as arthritis, sports injuries, muscle pain, joint stiffness, menstrual cramps and headaches."

(Photo: ThermiPaq on my knee)


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Sunday, July 5, 2009

New Diet (A Healthy Way of Living)

Green Smoothie (Kale, banana, apple, water)

Hope you are well! I wanted to update you on my new way of eating - more for overall health - with hopes that some of it helps specific conditions. I will be trying out this diet for a few months (and potentially for the rest of my life!), and I will report along the way with any changes I notice in my overall health.

I was vegetarian for many years, and in 2005, decided to go vegan for my health, for the animals, and for the planet. I don't want this site to be about veganism, but it is part of my lifestyle and will play a role in things I post. What is a vegan, exactly? Well, I embrace a lifestyle built solely on compassion and love. I don't use any animal products (like lotion made with lanolin which comes from sheep), eat any animal products (no pigs, chickens, cows, eggs, milk, butter, etc.), wear any animals (no fur or leather), support any forms of entertainment that use animals (like Sea World, the zoo, circuses, movies with apes, horse-racing, etc.), or support any forms of animal testing (for make-up, scientific research, food research, or anything else where vivisection is used. Animals feel pain and suffer just like humans do, and I will not take part in the suffering of an animal). I am not pushing anyone to go vegan, but I am an open book about kind choices, so email me if you have any questions or want more info! For those of you who aren't interested in the lifestyle, please just read on, as my focus is on all sorts of food allergens, not just animal products, and I think even the heaviest meat-eaters could stand some greens in their diet!

The great part about the vegan lifestyle, it cuts out a ton of potential food allergens - things that aggravate our GI systems, wreak havoc on our bodies, blood, colons, etc. When I cut out meat, I did notice a bit of a difference in the way I felt, but it was so long ago that I can't give specifics. When I cut out dairy, my life changed. With EDS, we have tons of digestive problems, gastro-intestinal problems, chronic constipation, IBS, etc. There was a drastic improvement with all of this. I felt like I could eat without feeling sick, more times than not. I was 'lactose intolerant' - and stopping the dairy helped with this, of course! But, being vegan doesn't mean that I was always a healthy eater. Chips, cookies, candy - those can all be animal-free and still horrible for our bodies. I have been focused on healthy eating for quite some time now, and when I decided to make these natural changes in my life recently, it seemed pertinent to reevaluate my dietary habits as well as my medicinal and physical habits. In doing so, I am making even more changes to my diet. (In addition, I have read many articles about meat and dairy aggravating symptoms of fybromyalgia, so I am glad those aren't in my diet and haven't been for some years now.)


As you know, I have done a lot of researching and reading lately, and it has come to my attention that nightshade vegetables are potentially toxic - causing inflammation and even possibly causing arthritis.
Solanaceae is also informally known as the nightshade family and includes peppers (bell peppers, paprika, chilies, etc. - black pepper is not in this family), potatoes (not sweet potatoes, but all others), tobacco, tomatoes, eggplants, Jimsonweed, mandrakes, deadly nightshade, and petunias. I have cut these out of my diet completely to see if this helps at all with some of the pain I have. There are a lot of great articles I came across, but I will just list a few below you can check out if interested (in addition to this topic being addressed in the Prescription for Nutritional Healing):

Can the Foods You Eat Make a Difference in Chronic Pain?
Article by Shereen Jegtvig,

"Another possible source of irritation comes from the nightshade family of plants. Whole fruits and vegetables are important to eat for their vitamins, minerals, and natural antioxidants, however some vegetables like potatoes, tomatoes, and eggplant may actually make pain from inflammation worse. These vegetables are part of the nightshade family of plants and contain a chemical alkaloid called solanine. Solanine can trigger pain in some people. While there isn't any formal research findings that back the claim about nightshade plants, some people believe they get relief from the symptoms of pain and inflammation. (Cont'd.)"

All About Nightshades: Explore the Hidden Hazards of Your Favorite Foods with Macrobiotic Nutritionist Lino Stanchich

"Used in shamanism, witchcraft, and even poisonous murder, nightshades have a history of both mystical danger and scientific caution. Some nightshade plants are ingredients in potent narcotic medicine and sleeping pills. It is reported that nightshades contain high levels of alkaloids which cause the bones to excrete calcium, other minerals, and trace elements from the body. Many enlightened doctors and nutritionists recommend that those suffering from arthritis symptoms eliminate nightshades. In this article, the focus will be on two of the most favorite "vegetables" in America. (Cont'd.)"

Popular Foods Source of Arthritis Pain and Inflammation
by Deborah Cooper

"According to a study conducted in 1993 by Childers, eating nightshade foods results in “a buildup of cholinesterase inhibiting glycoalkaloids and steroids…and may cause inflammation, muscle spasms, pain, and stiffness.’ The less cholinesterase the body produces as it ages, the less agile the body will be. Therefore, anything that additionally inhibits cholinersterase will add to joint deterioration and stiffness. Cholinesterase inhibitors such as nightshade foods affect mostly rheumatoid-type arthritis. Additionally, the study also reported a link between osteoarthritis and vitamin D3, which is produced by the nightshade foods. The researchers concluded that “osteoarthritis appears to be a result of long-term consumption of the Solanaceae, which naturally contain the active metabolite vitamin D3, and in excess causes crippling and early disability (as seen in livestock.)” Other research suggests that these nightshade foods all contain a substance called solanine, a bitter poisonous alkaloid that inhibits nerve impulses."

In addition to cutting out nightshades to help with the symptoms of EDS and fybromyalgia, I am cutting gluten out of my diet to help with EDS and bipolar disorder. Celiac's Disease is an allergy to gluten that results in malabsorption of nutrients. People can just have gluten intolerances or actually have Celiac's - and sometimes people who have a negative test result for Celiac's still may actually be positive for Celiac's Disease. I have been tested, and my results are negative for Celiac's; however, I have many of the symptoms of Celiac's or gluten intolerance, and it seems like many of the symptoms of EDS are right in line with them as well:

From - Signs and Symptoms of Malabsorption, Malnutrition, Vitamin and/or Mineral Deficiencies Associated with Celiac Disease:

Abdominal cramps, gas and bloating
Borborygmi (stomach rumbling)
Coetaneous bleeding
Easy bruising
Epitasis (nose bleeding)
Failure to thrive
Fatigue or general weakness
Fluid retention
Foul-smelling or grayish stools that are often fatty or oily
Gastrointestinal symptoms
Gastrointestinal hemorrhage
Hematuria (red urine)
Hypocalcaemia/ hypomagnesaemia
Iron deficiency anemia
Lymphocytic gastritis
Muscle weakness
Muscle wasting
No obvious physical symptoms (just fatigue, overall not feeling well)
Pallor (unhealthy pale appearance)
Panic Attacks
Peripheral neuropathy (nerve damage)
Stunted growth in children
Vitamin B12 deficiency
Vitamin D deficiency
Vitamin K deficiency
Voracious appetite
Weight loss

Experiencing a lot of these symptoms leads me to believe it would at least be worthwhile to cut gluten out of my diet and see if it makes a difference. Perhaps my vitamin D deficiency and osteopenia levels of bone-loss might not be caused by EDS alone, or by a gluten intolerance, but maybe both? Perhaps cutting out gluten will alleviate some of the gastric problems I still have, or at least alleviate some of the fatigue? I am willing to give it a shot.

In addition, gluten has been linked to mood imbalances with bipolar disorder. I had no idea!

From The Mood Cure by Julia Ross:

"Dozens of studies confirm that depression is a common symptom of gluten intolerance, one that usually disappears when wheat and the similar grains are withdrawn. People with gluten intolerance have low levels of the antidepressant, antianxiety brain chemical serotonin, and gluten has been implicated in mental illness since at least 1979, which is when I first noticed pychiatric journals reporting tremendous improvement in the symptoms of patients with depression and manic-depression in mental hospitals who had experimentally been taken off gluten-containing foods. More recently, anxiety, Tourette's, ADD, epilepsy and other neurological problems have been associated with these grains."

Natural Treatment for Bipolar Disorder (Manic Depression)
by Natasha Turner, ND

"There is much controversy over certain foods and their effects on our mood. Food allergens such as gluten, wheat, dairy products, food additives, alcohol, caffeine and corn may negatively impact our mental state. Gluten and wheat seem to have the biggest connection to the brain and mood."

What You Should Know About Celiac Disease
by G.J. Gregory,

"There does seem to be a quantifiable link between celiac disease and certain mental conditions, primarily autism and schizophrenia, but bipolar disorder is also mentioned. Depending on the study you come away with a “chicken or egg” feeling. Is celiac disease caused by the mental condition, or is the mental condition caused by, or aggravated by, celiac disease? Or is it not a mental condition at all, but other problems caused by the intolerance of the body to the gluten? It is certainly true that celiac disease causes vitamin and mineral deficiencies, and even neurologic problems. Because of the damage to the lining of the small intestine, the body may not able to absorb all it’s nutritional needs. This includes the absorption of certain medications, which for us can be a huge concern."

Per the Celiac Disease Foundation, "gluten is a common name for the offending proteins in specific cereal grains that are harmful to persons with [Celiac Disease]. These proteins are found in all forms of wheat (including durum, semolina, spelt, kamut, einkorn, and faro), and related grains, rye, barley, and tritcale and must be eliminated."

Oats are also typically on the no-no list for people with CD, but there are gluten-free oats on the market (available at health food stores and online, or perhaps Whole Foods or stores like it). The controversy seems to stem from the whether or not the oats are problematic, or if it's contamination from other grains.

Gluten is in everything! From the obvious (breads, cereals, baked goods) to the not so obvious (soy sauce, soups, ketchup), it will be a label reading game at the store. Nightshades are in plenty as well! No more Thai and Indian food - or at least the usual. No red sauce. No potato anything. A lot of gluten-free products use potato starch (often listed as 'modified food starch') as a thickening/binding agent, so I won't be able to eat those.

What else?

According to
Prescription for Nutritional Healing's guide to treating fibromyalgia, they recommend the following: eating a well-balanced diet of 50% raw foods and fresh 'live' juices. The diet should consist mainly of vegetables, fruits, whole grains (primarily millet and brown rice), raw nuts and seeds, soy products - these quality foods supply nutrients that renew energy and build immunity. Also, eating 4-5 small meals a day will keep a steady supply of protein and carbs available for proper muscle function. If the body does not have enough fuel for energy, it will rob the muscles of essential nutrients, causing muscle pain and weakness. Drinking plently of liquids to flush out toxins, specifically drinking water and herbal teas, along with vegetable juices. Don't eat meat, dairy, or any other foods high in saturated fat, they raise cholesterol and interfere with circulation. They also promote inflammatory response and increase pain. Avoid fried foods, processed foods, shellfish, dairy foods, and white flour products (bread, pasta, etc. - no problem there - they have gluten!). NO caffeine, alcohol, sugar. Eating sugar in any form - including fructose and honey - promotes fatigue, increases pain, and disturbs sleep. In addition, recommendations for bipolar disorder also list no caffeine, alcohol, sugar, dairy, carbonated bevarages, and no foods with colorings, flavorings, preservatives, and other additives. Eating omega-3 fatty acids (flax!!) helps stabalize mood swings.

So, what does all these mean?

  • NO meat.
  • NO dairy.
  • NO nightshades. (No potatoes, tomatoes, eggplants, peppers)
  • NO gluten. (Wheat, rye, barley, spelt, kamut, oats)
  • NO added sugars (I will only do a TINY amount of agave nectar here and there, but very minimally. And, I will still eat fruit. Nothing else.)
  • NO caffeine (Most days. I will probably occassionally have some yerba mate tea.)
  • NO alcohol (Haven't had a drop since March 14, 2008.)
  • NO artificial anything.
  • NO preservatives (I will do my best! So far, so good!)
  • NOthing else added.
  • NO soy*. (Well, this one is currently limited soy, with a possibility of going soy-free.)


*In addition to all of this, I have found the elimination diet to prove quite well at testing for food allergies. I have always thought I have a soy allergy, and after fasting, then going raw, I didn't eat soy. I tested it out by adding it into my diet on three different occassions. One time I had tofu I grilled up. Another time I had tofu a friend made. A third time I had TVP (textured vegetable protein). All three times I got si
ck to my stomach, had gas and bloating and felt naseuous for hours afterward, and still felt gross the next day. To me, that says my body doesn't like soy! I haven't had any since, and have been doing much better.

**Of course, you are wondering where I am getting my protein from. Americans, specifically, don't seem to understand that protein can come from grains, and you can get enough to be healthy. I would recommend, if you can eat soy, to add soybeans to your diet as well, but perhaps with as little processing as possible (Edamame or even tofu - rather than soymilk, or fake meats with all of their prese
rvatives and additives -and they normally contain gluten and nightshades. See below! :)

(Greens from my garden)

So, what AM I eating?!

  • Whole foods in their natural state!
  • Mostly, as much as possible, ORGANIC!
  • Tons of greens.
  • Salads, kale, spinach.
  • Lots of veggies. Fresh fruit.
  • For cooked??? (See the proteins below - flax, grains, beans, rices! Yes, they all provide protein)
  • Brown rice pasta, rices (not Uncle Ben's White Rice!), beans (I cook myself in a pressure cooker), millet or flax breads and pizza crusts, or tortillas (though I am limiting the things that are processed, so mostly just rices and grains). Gluten-free grains like millet & quinoa (a SUPER grain - a complete protein!).
  • Almond milk.
  • Nut butters.
  • Raw nuts and seeds.
  • Raisins, goji berries, dates, prunes.
  • More green leafy veggies.
  • More veggies in general. (Mostly raw)
  • Apple cider vinegar.
  • Bragg's Amino Acids.
  • All the supplements on my list.
  • Gluten-free oats.

Sound boring?!

Actually, I am finding that I crave these foods now, and my sweet tooth is being soothed by some cherries or a peach. I am feeling a bit more energetic (2 weeks in!). And, my digestive tract is LOVING me! Not really any IBS problems (minus the nights I ate soy). And, I am really enjoying these foods. I actually want to eat them - though, it wasn't that way at first! But, they say it gets easier, and I have to say - 'they' are right, as of right now! :) So, I am hoping that these new changes make me healthier in general, and will help alleviate some of the symptoms of Ehlers-Danlos Syndrome, Fibromyalgia, Bipolar Disorder, etc. I guess only time will tell!!

Thanks for reading - if you have any questions, please just comment below or email me!


(Pea Burgers, these were so good!)

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Wednesday, June 24, 2009

WHY: Vitamins, Minerals & Herbs

Here is a list of the Vitamins, Minerals and Herbs I am taking and the reasons I have determined they are important. Most of this info I got from Prescription for Nutritional Healing, my own Internet research, etc. :

*See post 'Schedule for Supplements' for the dosage I am taking!! (And, this is just a blog, I am not a doctor.)

I would list what I am taking for EDS and bipolar disorder separate, but as you will see, so many of the supplements' effects cross over into each. They are all just listed in random order below:

  • NADH (nicotinamide adenine dinucleotide) - active coenzyme of vitamin B3, increases energy, used to treat Chronic Fatigue Syndrome, Alzheimer's, Depression and Parkinson's. Also used to help athletes, reduce jet-lag, 'upper'. This also enhances production of dopamine and serotonin.

  • Taurine - antioxidant that helps the immune and neurological systems. Deficiency can result in hyperactivity, anxiety and poor brain function.

  • Coral Calcium/Magnesium - it was recommended to me by my endocrinologist that I get around 1,500 mg of elemental calcium per day. Just because a tablet contains 500mg of calcium, that doesn't mean they are mg of elemental calcium (most were like 500mg calcium, only 200mg of that being elemental). I found coral calcium to have the greatest amount of elemental calcium for what I need, and I don't have to take 20 pills a day. Just a couple shots of yummy juice. As we all know, calcium is needed for bone health. What I didn't know, is that calcium is needed for proper muscle function (the heart included), and that it helps relieve muscle spasms and pain. Coral calcium also contains vitamin D and magnesium (along with other minerals), naturally, and this will help aid in absorption. Also, most other calciums either cause constipation and/or have lots of fillers and fake ingredients (Calcium chews, Tums, etc.). Some coral calcium from Asia has been reported to have levels of lead. Concerned, I contacted the company I wanted to buy through (Dynamic Health), as I like some of their other products. They assured me their products are all lab tested an contain no lead. And, the coral calcium is gluten free (some liquid forms contained gluten).

  • Vitamin D2 (D3 is usually derived from animals) - My endocrinologist tested my vitamin D level initially and it was SUPER low. If you have EDS, get a bone-density scan and a vitamin D blood check. I have low-bone density at 27 (levels equivalent to osteopenia, bordering on osteoporosis). Calcium can't be absorbed without enough vitamin D. People with fibromyalgia, EDS, etc. tend to have low D levels. Low D levels, as reported on EDNF's website, are linked with pain. Vitamin D aids in bone growth and reduction of inflammation.

  • L-Tyrosine (with B-6) - free form amino acid, helps relieve depression and aides in relaxing the muscles. It gives energy and raises libido. May be helpful in treating alcoholism. Suppresses appetite. B6 helps the body convert protein to energy and helps brain function. Also, stabilizes mood swings.

  • Lithium Orotate - an organic form of lithium, I will be taking this for my bipolar disorder. There is a lot of talk about whether or not this is useful, as there are no human studies on treating bipolar disorder with it. Lithium carbonate is the pharmaceutical standard prescription, and it works, but has harmful side effects. Blood tests must be done to maintain levels below toxicity (can lead to death). The same is not true of lithium orotate, as it is more bio-active -- You need much less lithium orotate than lithium carbonate -- it is 20x more active. There are tons of sites listing pros and cons. I am going to test it out and give you my opinion. It also is linked in helping battle alcoholism (which is something I struggle with) - there are actual human studies proving this, and helps with headaches. Three articles attached for reference: Article 1, Article 2, Article 3. Click to read. Lithium is a salt that alters the manic-depressive cycles, resulting in greater mood stability.

  • Reishi Mushroom - a mushroom that has been used in China for thousands of years. It helps the body deal with stress and increases energy levels. It helps immune system function and is also used to detox the liver. The only company I will buy from is listed on my dosage post: MushroomScience. They use the traditional Chinese method of hot water extraction and back up all of their products with specific scientific documentation.

  • Cordyceps Mushroom - again, MushroomScience is my recommendation. Helps with stamina, energy and endurance. Taken by lots of athletes.

  • Colloidal Silver - a natural antibiotic. This helps immensely with urinary tract infections/bladder infections. I recommended this to a customer of my store and she came back a week later and said her infection was gone. :) I have had many issues with these my whole life, and this seems to help, along with the cranberry I mention below.

  • Maxi B-50 Complex - B vitamins are essential for energy and brain function. As a vegan, I need to make sure I get lots of B-vitamins, including lots of B-12, but even the average Joe needs lots of them. I have read a lot about people with EDS being deficient in B-vitamins, and not absorbing them easily, so extra should be taken anyway.

  • Flax Seed - ground - for fiber and EFA (omega-3) - you hear it all the time, I am sure. Essential Fatty Acids! Eat fish. Get your omegas! Well, flax, in my opinion is the BEST way to get your EFAs. Fish are high in omegas because they eat plants that are high in them. But a.) I don't eat fishies, b.) with all the side effects and health risks of eating fish today, it isn't a logical choice for EFAs, and c.) why not cut out the 'middle man' or 'middle fish'? and just eat the plants. Flax also really helps with digestion, constipation, diarrhea, IBS. EFAs are important for protecting your cells against damage, and also help in reducing fatigue and relieving pain. I mix ground flax seed in oatmeal (gluten-free oats), smoothies, etc. Also, I use flax oil on my salads. You could use flax (ground) in some soy yogurt for a nutty taste and texture, or just squirt a little oil into your yogurt. EFAs also help with circulation and blood pressure stability.

  • CoEnzyme Q-10 (with vitamin E and soy lecithin) - I need all three of these, and this tablet provided them together - hooray! CoQ10 is super important. Improves oxygenation of tissues, helps immune system, protects the heart. Lecithin (from soy) promotes energy, aids in brain function, and improves circulation. Vitamin E fights free-radicals, which helps immune system function.

  • Acidophilus and Bifidus - got Fibromyalgia? or symptoms of it? Then you probably get yeast infections. Candida destroy your good bacteria. Taking a probiotic (non-dairy only) will help replace those friendly buggers that we need to keep things functioning properly down there.

  • DMG - dymethylglycine - helps muscles use oxygen and helps fight free radicals.

  • Vitamin C - this is a BIGGIE. The one and only piece of 'natural health' advice my geneticist gave me was take EXTRA EXTRA vitamin C. Vitamin C has antiviral qualities and helps increase energy. In addition, if you get urinary tract infections, they extra C that sits in your bladder will prohibit the growth of bad bacteria, which can in effect stop UTIs in their tracks! :) And, by lots, I have been told to take 10,000mg a day. That is a lot. I will update you when I find a 'perfect' way to take this. Right now, I am combining pills, emergen-C, etc. It is hard to get that much C! I looking into some 2,000mg tablets.

  • Cranberry- UTIs be gone. I use an ultra concentrated form that has 1,000 mg of cranberry extract. (On the dosage page)

  • Multi-vitamin (vegan) that contains manganese, folic acid, and zinc - Multi - yep. Take in all the things that I need. Plus, I don't want to harm animals just to get my vitamins, so I buy a vegan version. (All of the supplements I have listed, with the brands listed, should be vegan. I did check them all out.) Also, mineral imbalances cause depression.

  • Emergen-C - the packets of fizzy goodness. They have too much sugar, but right now I am using them for the Vitamin C and the extra B vitamins.

  • MSM - Methylsulfonylmethane - relieves pain, provides support for tendons, ligaments, and muscles.

  • Boswellia - Ayurvedic (used in India, meaning 'life' 'science') - boswellia is the resin of the Boswellia tree - helps with morning stiffness and joint pain.

  • DLPA - DL-phenylalanine - Amino acid, effective for controlling pain. Increases mental alertness.

  • Blue Green Algae- best source of DHA (essential for brain function).

  • B-12 spray, 1 spray sublingual- energy! :) It also helps make myelin, the substance of which the sheaths covering the nerves are made.

  • Chlorella - good source of protein, maintain energy between meals, helps ease muscle pain

  • Vitamin E oil - antioxidant

  • Vanadyl 10mg with niacin and chromium picolinate - Another all in one! Vanadyl protects the muscles and reduces body fatigue. Chromium helps balance blood sugar. Niacin helps aid in absorption.

  • 5-HTP - 5-hydroxytryptophan - enhances synthesis of serotonin in the brain, helps relieve pain

  • Melatonin OR- Valerian root - ah....sleep.....