Category: lupus

Day 2 · iv therapy · lupus · NaBloPoMo 2012 · Superstorm Sandy · thankful

Progress

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NaBloPoMo 2012 —Day 2

So this morning I had an appointment with my doctor to see how my iv therapies are going.  It was a really good appointment.  My blood work for September and October were the best she has ever seen, and hopefully only 5-6 more therapies left.  Hopefully, my system will be put into remission with this medicine.  It is working for me, and really that is all that matters to us.

I am less stressed with not working, and the biggest thing I am missing is people interaction.  Although most of the time was positive, there are times especially with church members that there was conflict or some one just didn’t like what you were doing – right or wrong.

Now I notice when I don’t do the housework.  Ha.  Really? No, not really, but I do like my house to be clean and tidy.  But it is nice not to have to worry about work, or when I am going to be able to get something done.  Now the only thing stopping me is me.  I am still trying to figure out what to do with the clutter that continues to grow in corners of my bedroom and office/craft room.  But that is another day.

Hope you are having a beautiful Friday.  I pray (prayed) for all affected by the Superstorm Sandy this past week.  Living on the Gulf Coast we have grown accustomed to possible devastation and recovery with every storm that comes our way.  As bad as today or even yesterday looks, tomorrow is a day for rejuvenation and rebuilding.  I haven’t lost everything in a storm, praising God here, but I know some that have.  It strips you to the bone.  I see it as a new day to start all over with everything.  From new stores, to your home, to furniture, to school, and most importantly takes you back where your heart should be, thanking God for your blessings.  Storms like Sandy always make me thankful that the sun is shinning, I have a home, and blessed by my wonderful family.

Have you thanked God for something – anything – today?

Blessings,
Jerry Ann

family · London · lupus · Progress · Random Thoughts

Progress…

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Progress…I believe that I have acquired some recently.

Progress in thought that I have adjusted to the new routine of not working daily.  Well, sort of.

I had the privilege of meeting my hubby in London in September.  Wonderful.  We haven’t seen one another for about 4 months.  So it was a good break from his work in Bagram Air Base (Afghanistan), and for me to confirm the decisions that we have been making.

David and I at the Tower of London
Yes, we did all of the tourist stuff, and many museums. David is a geek of sorts, and loves armor and history. I love the Queen, and everything about the Monarchy.  So we compromised and got to see what we both wanted to see around the city of London.  We didn’t really travel out of the city.  We took our time each day and discovered things that we would not have gone to if serendipity hadn’t occurred. Walking everywhere in London wasn’t easy, but it was fun to do especially with David.  
But most of all, I really enjoyed just spending time with my best friend.  Talking about our past, present and future.  We enjoyed the time with one another.  David is now back in Bagram (prayers always appreciated), and I am back home with the kids and their schedules.  It was really good to be connected with him again.  I think both of us were a bit lost without the other for a while.  

The camera ad above is my new camera (got it for my birthday)…and yes, we took lots of pictures in London.  By lots, I mean 1928.  Yes, that number is correct.  My dear hubby took most of them, and the majority of them are pictures of items in museums (like game pieces that the Romans had played).  I did tell you he was a geek right?  I do love him, so very much. It is taking forever for me to sort through them though.  ha. Such is life, right?

On another note, my IV therapy’s have been going very well, (I do them once a month for about two hours) and I believe that I am doing better with the day to day of living with Lupus.  The daily stress is gone from work although I truly miss the daily activities of the church.

I am changing my habits to healthier ones with my diet.  I am trying to be PRODUCTIVE.  My Mom was German, and stated that “We must be productive!” every day. ha.  I do try, really I do.  Sometimes I have convinced myself that I have been productive if I am up and showered.  And depending on my fatigue level, that is good enough for me.  Our family goes by the Spoon Theory with my health, if you are unaware, please click on this link.  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Christine does a wonderful job explaining hidden illness and how we deal with it on a daily basis.

So, progress. I just wanted to update all of you.  Life is good, today is better than yesterday.

Have a great week.
Blessings,
Jerry Ann
anniversary · beginnings · lupus · Random Thoughts · sjogrens syndrom

Answers…

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I have been praying for answers for a long time now. I think we all do, in all aspects of our lives. I have been diagnoised with Lupus in May of 2008. Lots of steps in that direction, and more confusion. Yesterday I was diagnoised with Sjogrens Syndrome, and Raynauds. My new doctor is wonderful and ended my session with “you are weird.” Really? I have known that for a long while. I start Methotrexate tomorrow, and I am terrified. Terrified of what it will do to my body, and terrified what this disease has already done to my body and mind. I am positive to everyone, the majority of the time. God has provided me with a tremendous peace, and I do my best to portray God’s peace. It is so hard. Hard. I so want to scream, and kick, to be mad at God. Today, I had a precious friend call just to check on me. She cried when she heard what I am going through. I was strong with that conversation, but the moment I hung up, I cried. Terrified once again. I believe that I am saved by grace, and will be healed completely. There are moments of doubt when I try to control, but I come back to rejoicing in the Lord. Always. Phil. 4:4. Answers are only the beginning. Blessings. Jerry Ann

lupus · vbs

VBS Part 2

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Well, we all survived…and it was good.  This vacation Bible school was “Big Apple Adventure…where life and faith connect” by Lifeway.  This was one of their best vbs productions.  It was fun filled, modern music, and energized.  The kids loved it, and we were well organized (even though I was panicked  most of the time).

My daughter, Carmen painted most of the “sets,” and she did a great job.  She ended up helping the majority of the week with registrations to records, to being the Missions leader on Friday.  I am so very proud of her.

We have had a wonderful vbs director for about 8 years, and she really has her stuff together.  So, that made it easier, although my self-confidence really sunk low.

Speaking in front of people is never easy, and with kids I am more comfortable.  I was panicked about this I think beginning on Wednesday.  Our temperatures during the week averaged around 94, and no clue what the heat index was, but it was hot.  Running around all week, even with the sections being inside, it was really tiring.  I did try to rest when we got home, but there were things that needed to be done each day in preparation for the next.  Friday was the worst.  We hosted a family fun night and hot dog supper. Cooking 300 hot dogs, and 100 hamburgers was easy due to some wonderful volunteers.  But for me – exhausting. 

The best part was that we had children bouncing to areas (snack, music, recreation), and most importantly Bible Study.  Thursday was a great day for me, considering a 3rd grader came beaming about accepting Christ the night before.  He was walking on air, and Christ shown through.  I was humbled, in awe of the joy that came through him so easily.

The week ended, and I crashed – hard.  It was worth it.  I was honored to be a part of a great week.

Blessings.


lupus · share

bones

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My bones have been killing me the past couple of days.  Last night, I could feel my pulse in my right hip through to my knee, and tossed and turned all night long.  This morning has been spent in bed, and now with 10 minute turns in a chair so nothing goes numb.  Weather changes are here, and the rain has come and gone.  Now I want my pain to go. 

I normally push through, but the last 3 days have been more difficult to conquer the pain.

So…just an update.

Our family life is changing, and will update next week. 

Prayers are welcome.
Blessings,
Jerry Ann

cranky · lupus

Lupus

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I have been in a flare (fever, inflammation, fatigue).  I apologize for not posting anything in the past weeks.  It has seemed like it has been forever ago.  I was really bad and in bed Sunday evening, and Monday.  I went back to work on Tuesday with my fever, and left a little early.  It wasn’t enough rest.  Today is Wednesday, and my longest day at church (work, and then dinner with family, then bible study).  I didn’t make it.  I am home when I normally just finish up with the girls.  This will pass, and I will be better—just need to rest a lot more.

Bear with me.  Hopefully, I will catch up this weekend.
Hope all is well with all of you.

Blessings.
Jerry Ann

blessings · family · friends · lupus · Random Stuff

Busy

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Schedules.

Mine is normally not that busy on weekends mainly due to needing rest.  This past weekend there were commitments that I wanted to keep.  I did – I kept all of them.  Surprising even to me.

Do you say “no” when asked to do things?  Do you feel guilty if you do?  It seems lately that I do say no more.  The kids are extremely busy, but not as much as some I know. 

I am the social one in the family I think.  I like people –friends!  I enjoy them.  I want to be an encourager.  Hug, smile, and love on them. Some days are just busy.  Not enough of hugging, smiling or loving on anyone.  Schedule that time.  I plan to.  Our days are too short not to love on our friends and family.

Hug a friend, especially when they say no.  =)
Have a good Monday, and be an encourager.

lupus · Random Stuff · thoughts

Down Days

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The weekend has become my down time.   Monday through Friday I work outside the home.  One day, hopefully sooner than later, I will be able to work from home.  But for now that is the way life has it.  I have been off of the medicines recommended by my RA doctor for over a year now.  Overall, I believe that I have less issues without the side effects from the medicine than being on so many different prescriptions.  I hate taking pills.

Although there are days that are extremely difficult with joint pain, and fatigue.  Weekends seem to get me more now than ever.  The weather is becoming really nice outside, and with low humidity.  This just makes me sad.  I  need to rest, if I don’t – Monday will not be a good day, or the rest of the week.  I have off Labor Day Monday, but we had activities this weekend.  The family goes and does, and here I sit, resting, with my hips throbbing, and thoroughly exhausted.  I slept until 1030 or until my back couldn’t take it anymore.  You would think that I had plenty of sleep.  Nope, not today.  I have been focusing less lately as well.  It has been a long while that I have felt this bad. 

So another weekend, and I have spent my time either in bed or on the couch.  I am grateful that my determination is better come Mondays but overall, I still don’t feel well.  Days like today I wonder if I should go back on the medicines, but they seem to make the bad days every other day, then allow me to wait until the weekends.

So, the house is quiet, and I think it is time for a nap. 

anniversary · blog · lupus

A year later…a bit late…

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I can’t believe that I have been blogging for over a year.  My first post was in March of 2009.  My blog is just as I am, scattered and ADD.  Thanks for hanging in there. 

Today is a better day than yesterday.  This weekend has been really difficult for me.  Fatigue is at the worst…and I seem not to be able to sleep well at night.  I pushed myself the past couple of weeks, and now I am paying for it.  Yesterday was really bad.  I was either on the couch or in bed.  My hips and shoulders ache, and my ankles and wrists have a throbbing pain, that will come and go.

My goal today is to shower (I know), and maybe go the beach.  I need a beach fix.

Ugh.
But, it is a good day, for I am up and trying to move.  =)
Have a good day!