New project

I have been working one a new project... this one on the computer.. a writing project about my life with Fbyro and some ways to explain it to others. Today I was working on my typical day and decided that I needed to detail out 3 kinds of days a typical day, a good day and a BAD day... well the bad day one cracked me up so I thought I would share it here... while I did combine days for the examples the fatigue lvl is correct.

Bad day: mumble to hubby as he gets up to please feed cat, roll over. Wish I had enough energy to eat. Grab the flat soda on the night stand, almost drop it, manage to spill it on the bed. Grab the towel by the bed for this reason place under me as I am not moving. Day creeps on… nap on and off, is it bed time yet??? I need to eat… hubby offers to bring me the food he is making, only he forgot what he is making upsets my tummy, ask for pasta (it always goes down) make a mess of my shirt with pasta. Oh well no shower tonight, I hope I can get out of bed tomorrow. Crawl to feed elderly cat, then back to bed for the night. Now I am awake… listen to audio book for hours until I finally get to sleep.

I love this pain scale, for fybro I have a HIGH pain tolerance (not normal) but that means that when I say I am at a 5, I am putting it against the worst pain I have ever had that really fits the top of this scale. I have been at a 2-3 daily for 13 years then when the fybro hit 3 is a GOOD number I can function with that (as long as my joints are not stiff, and the fatigue is low) I can keep to a 3 most of the time if I do nothing but sit on a heating pad, but then I cannot function cause as soon as I get up the pain goes up. silly nerves :(

eyes... again...

I have know for a while that my eyes have been going down a road that I did not want them to again, after I had surgery 15 months ago I thought I should be good for another 10 years at least... but NO... went to the eye dr yesterday and it looks like my options are surgery again or glasses full time (they have ways with glasses to help that they cannot with contacts <sad face>) but I also have a minor infection so we are clearing that up before we look at what my eyes are really seeing and therefor what the options are... all when I have insurance that pays out NOTHING for glasses and contacts, and nothing for surgery... so it is gonna have to wait somehow anyway... and hopefully I get disability soon, then I can have medicaid and they will do more (not any thing on glasses or contacts but they will help with surgery at least if we decided that was the best option) I am gonna research and have a list of questions for the Dr next visit keeping in mind what he has told us so far. I went to a different Dr cause the other one seemed to blow me off, I think that he felt I was being a pain but I was only being honest and I know my body much better then he knows it from seeing me what a total of 6 times in 4 months or something like that.. But this Dr did all the measuring himself rather then having anther person do it and he spent more time looking at my eyes then any eye Dr has yet so that makes me feel good, he also has a better way with us. he knows the other Dr well and has never heard bad things about him but we just did not click... and I think it was that I knew something was still wrong and he did not believe me so he brushed me off, and I do not like being treated like that. until I started seeing my primary care Dr almost all the Dr's I have seen have done that with at least something I have told them. and sure enough I am right my eyes are doing the same thing they were before and one is starting to do something different also... grrrrr  What I have with my eyes is called strabisimus, I have had it from birth. but we thought my first surgery at 9 months was to fix it for good, little did we know that it often needs done again in life and often every 10-15 years... I went 31 years the first time so that I cannot complain about :)

Fybro Fight...

Last Friday I got my 2nd denial from Social security for disability benefits, while some might see it as discouraging I see it as encouraging because I was expecting 3 before I get benefits. This time they said that they can see that it has effected what I can do, I might not be able to do what I could before but I should be able to work some at lease.. HAHA! I emailed my lawyer from my bed as I have been here for the last 10 days now with the heating pad and the bed as the only relief I seem to get from hip/leg pain (and major sound/light sensitivity issues, so I can keep it darker and quieter)
I told my lawyer that if they (SS) could find me a job that I could do and paid enough to keep the basic bills paid I would gladly take it but even the state office the does food stamps did not want to try, they wanted a letter from my Dr to use as an exemption for me from the able bodied adults job program that you are required to participate in if you are on food stamps or financial assistance.
I have found several great groups on Facebook that are for Fybro and am learning that many of my odd little things many of us have, things that I thought were just me for years, even if the fatigue, over all pain, and IBS issues only set in a year ago. I have had little things for years back to my teens for sure and I think vary early on, but I was lucky enough to be healthy and my body did not let the worst come to the top until my surgery a year ago July, it built from July until Oct when it hit like a ton of bricks.
I read a story where a person explained being sick with lupus to someone with spoons (look up spoon theory, or check out my Facebook I linked it there) and I think while sad, it is soo true. I have to decide if I have the energy to do all I want to in a day and if I do all I want will it effect tomorrow's energy lvl?
Hubby had his monthly Dr visit today and then we had a little shopping to do and by the end of it we had been out 8 hours and I am spent. but I have things that I have to do tomorrow and Sat, then Mon,Tue and Wed next week.... so I will rest when I can and hope for good sleep (another nasty issue, trouble sleeping due to pain or other little things like temperature regulation, or random little noises)
I might be sick and not look it when people see me, but I learned to hide the pain a long time ago. People do not like to see others in pain so I hide it a lot when I am out and about. But I am not the person I was before and I WISH I was, I would love to work, rather then be home all the time. People think that being home all day is fun... they are wrong!!! Imagine having a nasty cold and being stuck in bed. well that is what it is like most of the time. just different symptoms and reasons, but not being able to do what you want and need to do cause the body says NO! not being able to go out and see friends or go to parties (huge energy drain, not even worth it 99% of the time)...
I hope to feel better, but will do the best I can each day with what I have that day :)

Potato Leek Soup

Potato Leek Soup

10 lbs potatoes

2-3 leeks 

¼ cup sour cream (to taste)  soymilk, or a soy sour cream can be used.

Olive oil, Butter, Salt, and pepper to taste

Cut leeks into rings or half moons (about 1/8 inch thick give or take)  then wash in cold water to remove dirt. Put into large pot with some olive oil, butter or some of both sauté until dark green and limp. 

Peel potatoes and cut into ¼ inch pieces. When leeks are done place potatoes in the pot, cover with water and bring to a boil.

Boil stirring occasionally for about 2 hours (until leeks are falling apart). Then use an electric mixer (my immersion blender works great) or potato masher to break potatoes into soup. Then add salt, pepper and sour cream.

Serve with any or all : bacon bits, cheddar cheese, French bread

Enjoy and feel free to freeze any leftovers it makes a great fast meal later. 

When re heating from frozen add a just a little water to the pot and heat slowly, after it comes to a boil heat a couple more min (it will re combine it, and loose the grainy look).

This is a favorite at my house and I can make it in large batches so I spend one afternoon cooking for 4-5 meals. I like that kind of cooking <grin>