Don’t be fooled by the calendar. There are only as many days in the year as you make use of. ~Charles Richards
Oy!
Every day is made use of even the ones where we rest, reflect, and chill! I remember the days on end when all I wanted was some relief of my symptoms. I know many of you are still in that place and I so wish it weren’t so. I still have those days although they are fewer between. I am feeling a huge responsibility to make sure that I express correctly how difficult most of the days with Spondylitis can be.
Please know I will do my best in my upcoming interviews. If you can express for me how you would say it – it would help me.
Until tomorrow.
Jenna
Day 358 was created in watercolor.
*** Thankfully computer issues resolved!
*** Have you seen the donations page? Holly set up a great page – please take a look!
*** Guest Apples are flooding in – please send in yours too. Here all the news that’s fit to print.
Never give up. Make sure to put it in perspective. More have AS that MS, cystic fibrosis and Lou Gehrig’s COMBINED! We need YOU the media to get this message out because it effects SO many people! Enlist their help. And please make sure to mention SAA and spondylitis.org and backpaintest.org. you’ll do all of us proud I am certain.
You are almost there Jenna.
Waking up after a night of tossing and turning, from dealing with aches and pains, you have to find the energy to get your body moving. Sometimes it can take you two or three hours before your joints are limber enough to tend to your daily chores. Small chores that should take minutes can stretch twice as long for someone dealing with this disease. Where once you used to have the energy to go all day, you now find yourself taking numerous breaks. All of this makes your day so much shorter, than that of a healthy persons day.. Once you get through that day, you know that it will be much of the same tiresome routine, almost each and every day to come. Some better or worse than the day before. Most don’t really understand, as when you are mobile, you don’t look that much different than someone who is healthy.
Vic,
Thank you. I need you to really understand how important your almost daily presence has been to me. I really can’t express it.
Thank you my friend.
I wouldn’t miss being here.
Jenna – I’m SO proud of you. I knew from the first time we met you were an amazing person, and now the rest of the world knows it as well. Best wishes for your NYC event, and thanks for throwing in the breast cancer apple so early on. Love ya!
Trying to be a full-time mom to two small kids is difficult under the best of circumstances, but when you add in Ankylosing Spondylitis, it’s much harder. Poor sleep, pain no matter what position I’m in, need for rest breaks, morning stiffness, increasing back pain the longer I’m on my feet, chronic costochondritis, hip pain which causes limping on a regular basis….
Errands can take all of my energy, cause low grade fever & limping & a spike in pain. I may need a nap afterward. Naps don’t always work with small kids in the home.
Lifting and carrying children? Forget it. Instant back flare.
Not to be negative, but these are some of my challenges.
Thank you again and again for what you are doing, Jenna!
Oh how I LOVE this piece! Something a little “Alice in Wonderland” about it ( :
And I can’t wait to hear about how the interviews have/are going! I know you are and will be doing an amazing job Jenna!