Friday, May 18, 2012

Getting the ugly out...

Having an autoimmune disease has changed me. It has made me slow down among many other things. I have lost control over what I can do and what I want to do. I have lost strength and I am not talking about physical though yes I have lost that too. I am talking about mental, emotional and spirtual strength. I am talking about what's inside. Having a chronic illness has given me the opportunity for reflection and self realization. Which I have realized I have ignored and need an overhaul. Feeding your soul is very important. It will help me feel at peace with myself. It will help me embrace life and accomplishments. Some things that I feel will help:

  • writing about my experience and letting others know what I am going through is painful but helpful, it has given me an outlet to express my feelings I normally would not. It helps me release the ugliness inside
  • Reading inspiring blogs and books. Hearing other's stories, feelings, and guidance I feel will help me feel not so alone
  • Taking "me" time, being a mom of 2 boys leaves me very little "me" time. I need this. I will use this time to watch chickflicks, happy movies, and inspiring ones.
  • Seeking help. I feel that I do need counseling to deal with the life altering changes I have been given. I need the extra support and someone to help guide me to inner peace
  • I am going  to go back to church, prayer and know this will help. Even before I was sick it felt good to go. I felt better. 
  • I am going to learn meditation and hopefully yoga. I need to learn how to react to stress better, to keep the poison out of me. I need to channel. I need to gain control and feel that this will bring me closer. 

These are just ideas that I am implementing and hope they bring me closer to being at peace with myself and my disease. If you have any additional that you have found helpful please comment! All ideas are appreciated! Day by Day!! 


When you become sick, you lose control of so many things in your life that used to be simple. This is frustrating and overwhelming. I was never one that needed help, support and guidance from others. I was the one people went to for these things. I am having a very hard time adjusting to being the needy one. It is the worst feeling to ask for help. It is the worst feeling to want something and not get it because it means moving. I struggle asking for help. I just keep doing things I cannot do. This gives the impression that I am fine and feeling good, even when I am not.  Then I pay for days. My body cannot do what I once did before. It seems that each day it can do less and less. This makes me more needy and Dang it, I do not want to be that person.

Recently, things happened where I was forced to ask for more help. This leaves me feeling guilty. I hate that too! :( Some people really jumped in and were a great help. Of course I appreciate every bit of help. I just don't want to feel useless. I don't want to think that I cannot do the everyday things anymore. I want to be able to do them and feel good. Or even OK. People shy away from neediness. It scares people. I am figuring out how to balance it. How to be OK with it and how to ask for help when I need it. Having an invisible illness makes it more difficult. Some people say "did you take your meds" others say "take an aspirin" or "moving will ease it" and I just have to sigh, remind myself they have no idea what I feel like and move on. It is so hard to get people to understand. Any advice?

Then I have to turn around the conversation and talk about the neediness of others. While I love to be needed I feel that some have unrealistic expectations on what I can do and what I do do.  (LOL I said do do) This leads to resentfulness which is not pretty! it adds to the ugliness I am trying to rid! I also need advice on how to handle this!

I appreciate your time and look forward to hearing your advice!

Friday, May 4, 2012

The pain has relocated....

This week I have a new "flare-zone". It is so odd how the pain relocates itself. Never giving any relief. My left knee has been giving me more and more pain everyday. Stairs are very difficult and I avoid them if I can. This is difficult in my house as there is no bathroom on the main level!!! I am finding that each different joint flare up seems to cause more and more pain. The good thing I have going right now is being off of work has rested my shoulders and they only give me difficulty if I over use them or extend too far. So that is good. Right? The non-RA bad news is being off of work puts more stress on me as we are struggling financially and medical bills along with others are adding up fast! More stress equals more pain....UGH.

It moved to my knees. Until now, they have only ached, it has been my wrists, fingers, shoulder, toes and ankles causing me pain. Now add in the knees. I do not sleep well as it is. I lie there thinking about which joint hurts more. Which one I need to avoid laying on. Which one has been the stiffest. On top of the pain, all the meds cause insomnia. There is nothing worse than being in pain and utterly exhausted and unable to sleep. My best sleep time is my one hour nap during the day. It is the only time I wake up and think "that was good sleep".  SUCKS!!!! I should be in bed now. I would except I find if I stay up as long as I possibly can I might get a few hours of sleep. The lack of sleep, the pain, the frustration makes me bitchy. I don't like to be bitchy. I like to sleep. I have added 9 new medications in the last 3 months and do not want to add a sleep aid also.

I need to feel better. I want to try meditation and yoga but both need energy and motivation. It is hard to motivate myself to do much of anything other than hang out with my boys and some days I have to force myself to do that! With the new pains in my knee, I get more scared. I am freaking out inside! I like walking. I do not want this to be the start of the end of that.  This joint is one I need to be mobile. For 2 days I have not even wanted to put any weight on it. I have, as I am not in a point in my life where I can stay in bed. I just tried to limit the amount of walking, standing, and other activities being on my feet. I cannot tell you how many times in the last 2 days I told my kids "please understand, my knee really hurts and I need to sit". My 2 year old will then check my knee out, see no band aid, kiss it and say ok all better wanna play now? Makes me smile and makes my heartbreak at the same time.
The DH seems not to understand either. I probably told him more than I told the kids and he just shrugs it off and says "its always something", or "really" come on. I am tired of trying to beg him for help. I feel that I should not have to. It makes me sad.

Like I said, I am taking some time off, hoping the new meds will be of some help and I can find some relief. I notice that it is having some positive effects. I have a little more energy. I get a small nap in. I can last longer. It has helped my feet some. They do not ache all day. Still swollen but currently not the major source of my pain. Well I need to try to go to sleep now. Just wanted to jot some things down. Until next time, I appreciate you all listening to me!!