Friday, September 16, 2011

Does It Get Any Easier?

 This morning started off like every other morning. Just getting out of bed and coming downstairs did me in. The pain and stiffness upon waking on this chilly morning makes it clear that I am going to need extra time to get through morning routines and get kids ready and off to school. The problem is that there is no extra time, I spent that lying in bed waiting for my morning medication to kick in. Gentle stretching to try to loosen up joints was to no avail this morning. My jaw ached like never before but I guess I shouldn't be surprised it too is a joint. It is going to be one of those days that is clear. Ready or not I had to get up.

Slow was the order of the morning. As I was getting the kids breakfast ready I found myself frustrated beyond belief...I couldn't open the cutlery drawer. You have got to be kidding right? It is just a drawer but my hands could not pull it open. I had to ask my daughter if she could please open the drawer for me. She did with ease and my eyes welled up. I headed upstairs to get dressed and found once again that I could not open my dresser drawers either. I could not stop the tears this time. I sat and cried for all of the things that I can no longer do for myself. Thank goodness my kids are old enough to get through their morning routines fairly independently. Requiring only reminders to make sure things are done. I on the other hand am losing independence and it breaks my heart.

I pulled myself together and being my usual stubborn self rather than ask for help yet again, I decided that nobody would notice if I drove my kids to school in my nightshirt and fuzzy pj bottoms. If they did I would die of embarrassment but I was out of time and the kids needed to be driven to school. Luckily nobody noticed me getting in and out of the van so luck was on my side :)

I feel like I am losing so much, so very quickly and before I have time to come to terms with one loss I am faced with another. My hands are badly hit by the RA with 14 nodules on each hand (those developed before treatment), both pinky fingers that lean way over away from the other fingers and my middle fingers are ever so slightly leaning towards my pinkies. I can no longer straighten my fingers. When are these medications going to kick in and slow this damned disease down??

Depending on the day: holding or grasping things are out of the question, cutting my own food or chopping food for dinner prep is done by my husband, typing has to be done in short spurts, I can no longer brush my daughters hair nor my own, I need a new buttonless wardrobe and the most difficult is that I cannot use my cane to help me get around...the list goes on and all of these changes have occurred in the past month. Then there are the issues with my feet, the nodules that make walking difficult, toes that are crooked and bent under and my big toes that now lean across and under the toes next to them. Socks hurt and shoes hurt more...I am going to be forced to commit a cardinal sin...socks with crocs :-) for this cold fall and winter to come...eeks! My achy jaw from this morning stayed with me and has eliminated chewing food...this is just one of those days that make me want to go back to bed and start over again! Perhaps time to dig out my heating blanket (graduated from a heating that was packed away for the summer.

Sorry for the rant but these are the feelings that can take me to dark places and I am trying very hard not to go there each and every time I am faced with a new loss. How do you face these challenges? How do you keep a positive attitude? Any words of wisdom would be greatly appreciated as I try to figure out this new reality of mine.

© 2011 Rhonda


  1. Rhonda.. I wish I could offer advice .. I have been sharing your link to this blog.. trying to spread the word on these conditions..

    I've shared your link on sparkpage, and on my facebook page as well.. and I'm going to be doing a blogspot too.

    if I could remember my email addy for twitter, I would share it there too :S

    and each time I've asked others to share the link to this blog with others

    there is support out there.. we just need to dig deeper.. spread the word wider..

    I may not be able to offer much in the way of support or advice.. but you can count on me to be here to help in any way I can.

    what days would be good days to call.. you mentioned in another blog about your chemo days knocking you down for about 3 days.. so would Fridays be a better day to call.. or Saturdays?


  2. Rose,

    I cannot thank you enough for trying to get the word out there so that this invidible illnesses get the recognition they deserve. Not only that there are so many people suffering with no idea what is wrong with them. If Auto-Immune was more understood it would make the world of difference. Thank you for spreading the word. Now that I have changed to the injectable methtrexate it does not knock me down as long. The only day that is best to avoid is Thursdays :) Thanks again my dear friend ((HUGS))