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.