Walk it out...

Its funny how some days I can walk around the lake and other days I can just barely make it to the mailbox. I guess I just need to make those good days count. Today Lexi and I made it to the mailbox and back three times! Quite proud of myself. :) I also have been using my baby 2 lb free weights in bed to try to get my arms stronger. So far I'm not counting reps, just using them until my arms hurt. But I feel like even just a little bit is still more than nothing! Just make the little things count. Walking up the stairs, walking around the grocery, standing to cook. It all adds up. 


I took this picture of a butterfly this spring with my iPhone 4. It makes me smile, hope it makes you smile too. :D

I saw this on another person's blog and thought I'd pass it on...

Invisible diseases. What can I do to help myself feel better?

Because symptoms vary among these Invisible Diseases, and each person reacts differently, it is impossible to have one straight answer for everyone. However, there are some general adjustments that many people have found to help them. Of course, check with your doctor before making any changes to your daily habits and health regulations.

1. Many people have found that a low carbohydrate (not NO carb) diet has helped tremendously. The regulation of blood sugar is important for the body in general. An easy rule of thumb is to stay away from simple and refined flours and sugars. In other words, avoid most of the white powdery substances in food. More complex carbs like whole grain and whole wheat tend to help people digest slower and gentler than processed carbs.
2. Probiotics can help to balance digestion and infection regulation. You can find probiotics (such as Acidophilus) at health food stores and online.
3. Temperature regulation seems to be very important for most people with these Invisible Diseases. The body is so very sensitive to changes when a person has an Invisible Disease. So, try to avoid extreme hot or extreme cold.
4. Drink tons of water! Two to four liters per day is generally recommended due to the common problem of low blood volume and blood pressure issues that so often occur among people with Invisible Diseases. This can make a much bigger impact than you realize. It can also help with dizziness and nausea in many cases, due to the constant dehydration in the body.
5. Listen to beautiful music and uplifting entertainment. Believe it or not, music has shown to effect our bodies and overall health. Think about it, when you hear loud screaming banging music, it causes a different internal reaction than if you listened to calm soothing classical sounds. The mood can be lifted with the right music and entertainment. Avoid harsh chaotic sounds and scary or depressing movies. Because Invisible Diseases cause brain fog, the effects of a simple scary movie can be quite impacting and lasting. This causes unnecessary stress on the body.
6. Laugh! Even if you have to force a little laugh out here and there just to get it going, just find some way to have a little laughter. Even watching a funny movie can help. Anything to brighten the mood is very helpful when you have such a sensitive body. Laughter causes physical movement as well, which ignites the lymphatic system. This benefits the immune system, so laughter really IS healing, on many levels.
7. Most importantly, do anything that you can to surround yourself with a supportive and loving group of people, including your doctors and nurses. This can be very difficult for some people, but please try any way that you can to find doctors who understand your Invisible Disease, or who are at least willing to learn about it. Of course, loving relationships in your daily life are essential as well. Reach out to others like you online, create friendships that way and share information. Always remember that there is hope! Keep hoping and knowing that people are working hard to help you, even if you cannot see it directly. Know that you are not alone and that people really care about you! 

Losing your marbles...

I saw this on the DYNA Kids website. While i'm not a kid, i think this is an excellent way to explain one of my frustrations with POTS. I guess I just like the marble analogy for how hard it is to balance all the things you do in a day and how much more effort everything takes when you have dysautonomia. 

"You may have heard of people with illness obtaining balance in life by "learning to live with a limited number of marbles in their jar." Let’s just pretend that you have a jar of marbles at the beginning of each day. In your jar you have 100 marbles. You use 25 marbles to get through your school work. You use 25 marbles in your friendships and relationships. You use another 25 marbles following your physician’s orders. It takes more marbles to perform all the activities necessary to manage your illness. We haven’t even listed the normal activities of daily living that you must do (bathing, cooking, chores, etc.). And well... by the time we get to your emotional needs, you probably have no marbles left to live with!

As time goes on you get tired of living on the edge with those darn marbles. They start rolling away on useless tasks, and next thing you know you have lost your marbles before the day even starts! No pun intended. You need to gather up your marbles and keep count of them and be selective about using them throughout the day. Save some for the party you may want to attend tomorrow or the friend you may want to invite over this weekend. And remember that assignment due on Friday! They are precious marbles you have in your possession – don’t lose them!"

Allergies

I'm not sure if anyone else deals with this problem, but my doctors say its a part of dysautonomia, so probably. I've developed a laundry list of allergies in the last few years.

Dietary Changes for POTS

So since we're running out of new ideas to get me feeling better, I'm trying a few changes in my diet. I already don't eat pork, but I'm also cutting out beef and chicken. I'm not becoming a full vegetarian since I will never be able to give up my New Orleans seafood, but I hope that by cutting out the meats that are full of antibiotics I can both help my health, animals, and the environment at the same time. A three birds with one stone effect. I love food, don't get me wrong, but its one thing I can take control of and be more empowered to take a more important role in my health. I've made a second blog about my adventures in foodieism (yes I made that word up). http://caitlinlovestoeat.blogspot.com is the site if anyone cares to see what happens. I'm not sure if anyone here is even reading this blog, but I plan to keep you up to date as to if the new diet helps at all with my dysautonomia or fibromyalgia. I started this blog both as an outlet for myself and to help those who were going through the same thing as me, I hope my mistakes and my successes that I put in here can help others with this disease to help themselves. There is hope out there, we just need to hold onto it and there will be a treatment that works (and maybe even a cure) out there for all of us.