Oh the winter time blues...

As the rain sets in here in Oregon many of us find that we are sucked in by the winter time blues. The days get shorter, wetter and colder and you can't help but wish that you could stay in bed all day and eat nothing but hot chocolate and candy. So in honor of the first great deluge of the season some tips for keeping your head above water and your mood out of the gutter:

1. Exercise- we don't want to do it and for some of us perhaps we think it is out of the range of possibility, think again. Exercise is possible for most of us. We don't have to be marathon runners or gym rats to get a little exercise. Try starting with 10 or 15 minutes of dancing or walking a day. If you have mobility issues there are some great chair yoga videos on you tube (look for links at the bottom of this post). Also many of the local aquatic centers have aqua aerobic classes which, I know I know sound lame, but they are really fun. Check out your local gym or aquatic center, if you need help locating a class please contact me and I will help you find out if there is a location near you. The bottom line is- get up and get moving. 

2. You are what you eat- If you are anything like me as soon as the cold weather sets in I want to start eating every bad food in sight. It is so much easier to eat healthy in the summer when fresh fruits and veggies are readily avalible. In the winter a lot of these foods go away and then you have to be much more careful about the processed foods. Those who suffer from winter depression tend to have a penchant for sweets which can get you into trouble quickly.  

3. Get outside- So the weather is crappy, this is Oregon. In most parts of the state we have learned to adapt to the rain. It is wet here for about 9 months out of the year, if you are going to let a little rain stop you you should probably move south. For the intrepid types, slip on that poncho and pull on those rain boots and get outside during daylight hours. Even 20 minutes a day can give you a little boost of vitamin D as well as a mental boost from the fresh air and exercise. There may not be much sunlight eeking through but it is there! 

4. Don't become a hermit- Get out and socilize whenever possible. CKD/ESRD can often be a lonely and scarey disease but you are not alone. Reach out to your friends and family, support groups both online and in your community. Knowing that there are other people out there who are going through what you are going through is so importiant. Don't be afraid to reach out and ask for support when you need it. 

And last but not least....

5. Laugh- As they say "laughter is the best medicine". I don't knwo who said it but I am sure that they are right. Watch a funny movie, have a girls/guys night out, go to a hockey game or to a comedy club (Portland has some great comedy clubs if you like comedy). Just get out there and enjoy life, having an illness does not mean you have to give up fun. Show winter that you can still have fun even if it does rain on  your parade. 

In conclusion, don't let winter (or CKD) get the best of you. Get out there and do the things you want to do (even if sometimes it seems like staying in bed would be so much easier). Oregon is beautiful, even in the rain, enjoy it.

Chair Yoga Links

- http://m.youtube.com/watch?v=WYzZUVBmZCQ&desktop_uri=%2Fwatch%3Fv%3DWYzZUVBmZCQ

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Recipie- Apple Cider Beef Stew

In honer of the icky cold rain and wind that has moved into Oregon a yummy stew recipie. From the Davita website, Apple Cide Beef Stew. I have not tried it yet but it will be on the menu for sometime this week. Looks like a good option for dialysis and diabeties patients. It does have potatos in it (which you may know is a no no food) but only 1 1/2 cups for the whole recipe so you should be good :)

Leave a comment if you try it out. Would love your feedback! Stay warm and dry out there. 

http://www.davita.com/recipes/soups-and-stews/apple-cider-beef-stew/r/6131

You thought you had it bad on a regular diet, try a renal diet!

So for those that are new to the CKD/ESRD/dialysis community you are probably just being introduced to the renal diet. Before I got sick I was just like any other 31 year old, I mostly ate like crap, drank WAY too much soda and best of all ate pretty much whatever I wanted. Upon being diagnosed with CKD I had a crash course in the bad P's; phosphate and potassium. There are many toxins that can build up in the body when your kidneys stop functioning but these 2 are the ones they will focus on the most. 

Here is a great link from the National Kidney Foundation website that tells you all about phosphate (phospherus) http://www.kidney.org/atoz/content/phosphorus.cfm , It gives you a good list of good and bad foods. This is not by any means a complete list but it is a great place to start. And this link will take you to information about potassium http://www.kidney.org/atoz/content/potassium.cfm. The NKF website is a great informational website for people just starting out. 

The long and the short of it is that you have to avoid foods with too much of either of these. It is a lengthy list and I guarantee it will not be easy for most people but trust me, if I can do it so can you! 

Some tips:

- Don't freak out when you see the list. For most people there is some wiggle room and you will not have to give up all of the food that you love. Work with your dietitian to fit in the foods that you really love, 

- Avoid all of the obviously bad for you foods; i.e, fast food, soda, pre-packaged meals. All of these are VERY high in phosphorus. Also, it is an artificial phosphorus which is often used in preservatives and it is much worse than naturally ocurring phosphorus. 

- Be cautious with anything that is not a fresh fruit or vegetable. Many packaged foods have hidden phosphorus in the form of preservatives. A few surprise bad foods to watch for are; lunch meat, meat (all kinds, even fresh from the grocery store). 

I am sure there are a million things that I am missing but these are just a few tips to get you started. If you have questions or comments please feel free to leave them below. I am not an expert by any means but I am happy to try and anwser or share my resources. This is a big life change that has been thrust upon us, patient and families alike and we all need to stick together. 

Update- We're Gettin' There

So the last week or so has been pretty crazy but I have managed to take baby steps toward establishing a non profit corperation for OKO. I have a couple more forms to file and then it is just a waiting game. 

On a personal front I have a meeting next week with the transplant clinic which I am nervous and excited about, fingers crossed it goes well! 

I am working on a few informational posts, I hope to post the first one today. I am currently at dialysis and the wifi here isn't great so we shall see if they will post :). There is a Facebook page set up for Oregon Kidney Outreach which I have not really told anone about but has already gotten 3 likes (not including me) so that is pretty cool. Check it out and give us a thumbs up and spread the word. 

I hope everyone is doing well and as always if you would like to get involved with OKO we are currently looking for people to do informative blog posts and a few other projects for the website. You can comment below, e mail me at sharonnelson123@gmail.com or message me on Facebook. 

Thank you for the support!

Step 1- You have to fill out how many forms???

For the last few weeks I have been reading countless articles, websites and books about starting a non profit. You have to file with the IRS, Department of Justice and the State along with a slew of other organizations. Each of these has a application that you must complete and some have to be done before others so that you can send copies with other applications. I have made a list in order of when they need to be done and how long it takes to hear back about approval. 

Today I started working on writing the organizations bylaws, I have gotten a template from a website and have started proofing and adjusting the document to fit OKO. I got about 1/3 of the way through before my eyes started to cross and I could no longer look at it. (in case you had not guessed it is a very lengthy document) I will work on that again tomorrow or perhaps on my next dialysis day. This document will likely need to be proofed by an attorney just to be safe. 

I will also be applying for an EIN (tax identification number), this should not take too long to get back so that I can set up bank accounts and send copies with other applications that require it. 

Luckily I am fairly familiar with what it takes to establish a company so it should just be a matter of submitting the forms and waiting. I have never tried to apply for tax exempt status from the IRS and I am hearing that is a fairly long wait but is not required to establish the company and begin some of the local support work and education. 

I am recruiting people to be on my board of directors, I have 1 possibly 2 people that are enthusiastic but it is difficult to find people who even know about kidney disease let alone are willing to devote a large amount of time to the cause for no pay! So if you know anyone in Oregon who is willing to lend a hand tell them to contact me. Sharonnelson123@gmail.com. That is about all I have accomplished so far, I know there is a lot still to do but I will keep at it. 

For those who are interested in donating I will be setting up a GoFundMe to help cover the costs of startup. I will post details as soon as I have them. 

Why did you sign up for this???

I was diagnosed with Kidney Disease July 3rd of 2013, a little more than 2 months ago. I was 31 years old. I had somehow made it through 31 years without knowing that I had only 1 kidney and the one that I did have was less than enthusiastic about normal operation. So I started dialysis on July 15th and learned to live a different kind of life. 

Life on dialysis is scary and complicated but I was determined to not let it rule me; I would still be in charge of my life. I only missed about 1 week of work and then I was back to a fairly normal schedule working a full 40 hrs a week; tired and stressed to the max but still determined. At the advice of the clinic social worker I began to seek out support from others on dialysis. I have joined several facebook groups and online forums and have met a ton of amazing inspirational people. 

I have also learned that there is a HUGE gap in the services provided by insurance and medicare. Some people are lucky and have good jobs or spouses/ family that can support them, but others are not so lucky. 

They struggle to afford medication, basic utilities or food. People are disabled and require a wheelchair or walker but cannot afford to install a wheelchair ramp to gain access to their own homes. Patients are often left feeling alone and scared and have no idea where they should turn for help. Dialysis clinics offer what they can but at the end of the day they are limited to what the corporation allows them to provide. New patients facing dialysis have little to no idea what to expect from dialysis, they don't know enough about the process or what is happening with their bodies to be an effective advocate for their own treatment. 

I am establishing Oregon Kidney Outreach to help bridge this gap; to help patients find resources and to be a resource when there is no one else to turn to. To educate patients about dialysis and what to expect and how to be a good advocate for themselves. Most of all I want to create a community where people can get in contact with someone in their own community, someone who knows what they are going through and who can help take some of the mystery out of the process. I know it will be a long road and I fully have my work cut out for me, establishing a non profit is no easy feat, but one step at a time it can be done!   

I want to thank those who have supported and encouraged me since being diagnosed with Kidney Disease, I would be nowhere without my amazing family.