The Company of Others

It's always nice to know you are not alone.  A week ago a woman called me who has had Lupus for about 20 years.  She is a friend of a friend.  We talked for the longest time "comparing notes."  Her story is much like my story.  The medications she has taken over the years are the same ones I've been on.  About a year ago she started on Rituxan.  It was really good to share with someone in the same boat.  Not that we moaned and groaned, but that we helped to encourage each other as well!

The other day my son told me he was going to give my blog link to someone so they could pass it on to a person they know who has lupus.  I think there are people out there reading my blog, but no one leaves a comment or even mentions that they were here.  I am disappointed in that.

I continue to work out and feel that my time at the gym really helps keep my joints loose.  I am still on the organic diet, but it is getting to be a lot of work.  I am cooking two completely different meals most days:  one for me and one for my husband and son.  And there are times when I really want to have what they are having, but can't because it's not organic.  There may have to be some "modifications" to this business of going totally organic.  I wouldn't drink a diet soda or diet anything even if I was dehydrated!  I know the artificial sweeteners are JUST BAD, BAD, BAD!  I am avoiding additives and preservatives - I know how bad those are.

Heart

The results of the heart echo showed that I do have a leaky valve, but at this time there is no need for extra measures.  The blood pressure medication that I am on is perfect and I am to stay on it.

Went today to the Working Women's Survival Show.  This is an annual event for my daughter and me.  This year we took my daughter-in-law along.  I am so glad that I am feeling pretty good, because we walked SO MUCH!  Had a great time!  Really enjoyed the day.  When I got home, I immediately took a nap.  I was very tired and my legs hurt.  I slept an hour.  I really have to say it was a fun day!

No Tear

Saw the shoulder specialist yesterday morning & I have no tear in the shoulder!  She could see the calcification deposits on the x-rays and was sorry that I had such an awfully painful and long lasting Lupus flare.  But that's exactly what it was - a Lupus flare.  Although the pain was severe, there is no tear. 

I am ready to move forward now.

The Strange Workings of Lupus

Woke up yesterday morning able to move the right arm almost any which way very easily!  Lupus is so strange - it will take hold of a joint and not let got until it is good and ready to let go.  After all these weeks of tremendous pain, it finally let go of me.  I hope it lasts for a good long while!

It was such fun to be able to hang things in the closet with my right arm.  I had to show Tom, "Oh, look at this!"  I was on such a high all day at work.  So happy to not be hurting.  When I got off work and went home, I quickly changed into some jeans and got my gardening gloves and clippers and set out to work in my landscaping.  It felt wonderful to be able to do things I hadn't for so long.

Oh, that Lupus is a strange one...............

Visit Primary Care Physician

Yesterday my shoulder hurt more.  It had been getting better.  Maybe doing the gentle yoga was too much for this week.  This morning I could barely do my hair - it took great contortions to get my right arm to go up.

This afternoon I saw my primary care physician who said the last time I saw him (several months ago), he heard the murmur.  He had noted it in my chart and was going to recheck me on this when I came back in July.  I am to have an echo test of the heart on Friday afternoon.  The echo will show exactly what's going on.

Moving Right Along

By the end of the day after my workout Wednesday, I felt achy.  My son reminded me I would probably feel worse the next day!  He was right!  I hurt all over.  I forced myself to go to my scheduled workout Friday morning, but we took it slowly and eased things up a bit.  My trainer could tell I was walking better by the time our session was over and I felt better as well.  I was so exhausted at the end of Friday after babysitting my little grandson.  That night I hurt all over, but especially in my right shoulder, hip and ankle.  The pain in my ankle had me in tears and sitting up in bed rubbing my leg.

My husband urged me to try to do my "gentle yoga" this morning.  I really didn't think I would be able to do it and I have to admit it was the worst I've ever done.  But I did what I could and had to sort of be extra gentle with the right side stretches.

I did take a half hour nap this afternoon which helped me to feel a bit more alert. 

Since my rhuematologist found I have a heart murmur which I did not have before, I will be seeing my primary care physician Monday afternoon.  I'm sure he will want me to see a cardiologist.

A New Trainer

I am not starting P.T.  After an evaluation at Physical Therapy, it was determined that I very gently start doing some exercises on my own.  It really didn't make sense to go through p.t. when I've been so many times before and know the exercises by heart.  I will do them.

Today I started back to working out at the gym.  I've missed several weeks having been in so much pain.  When I called to reschedule, I spoke with the owner of the gym who has a good understanding of Lupus.  Now he will be my trainer.  I feel good about this. 

Time - it's own relief

Ten days on pain killers.  Finally, two days without.  The right shoulder is starting to ease.  WOO-HOO!  I have never had a bout that lasted this long.  I don't like this at all.  Not fun.  There was nothing I could do about it, but wait it out.  Other bouts of pain in one location or another would be three days, four days, but never two weeks tomorrow.  I guess the doctor is right that my meds aren't working anymore.  Time for something different.

I am still doing the organic diet.  I do not notice even a bit of difference.  The food is delicious, albeit more expensive.  It's more work, because I am cooking for myself and also cooking for Tom and Matt.  But I said I would do it and I continue on.  Who knows?  Maybe I will see some sort of change eventually.  I know this is healthier.

My rhurematologist's office called me the other day to say how sorry they were that I can not get in to the shoulder specialist until the 22nd of Feb.  In the meantime Dr. wants me to go to physical therapy.  I've been to p.t. so many times, I could be a physical therapist.  I don't think physical therapists understand the mystery of Lupus.  I get the feeling when I walk in they are thinking "she's here again".  The nature of Lupus is that it moves from one joint to another. 

I had been doing a series of exercises every morning and evening until this most recent episode got so very bad.  Then I simply could not do the exercises.  Barely moving my right arm was excruciating.

Today I could almost completely dress myself.  In this cold weather, I have been wearing turtle necks almost exclusively.  It is impossible for me to get a turtle neck on these days.  Tom had to help me yet this morning.  I was able to do my own hair today and I consider that a great accomplishment!!  It was very painful and difficult, but I really pushed myself to do it. 

I start p.t. tomorrow.  I am sure they will push me a little.

I've been thinking lately about the fact that Tom & I usually take a winter vacation.  I like to get away from the cold.  We didn't make any plans this year.  And what do you know, but we are getting hit with several inches of snow every couple of days.  I really hate it.  My body doesn't tolerate it well.  On the other hand, if we had made advance travel plans, I'm not so sure we could have gone with me so sick.  There's no way I could have helped with luggage, I could barely carry my own purse.  I wasn't sleeping well for so many nights with this ungodly pain in my shoulder.  That wouldn't have been good for a vacation.  Seems things worked out for the best.

We did spend a huge chuck of change on a temper pedic bed.  It came when the pain had first started, so until these past two nights I haven't been a very good judge of it.  Now that I am doing without pain medication, I would say the bed is wonderful!  I am so glad we made this investment.  Spent vacation money for the bed, you might say.

I am disappointed with my blog.  I thought people would read it and post on it.  No one is posting.  I thought that when you created a blog, it was out there and people wanting to know more about Lupus or wanting to share their info on Lupus would post.  It isn't happening.  I'm not sure how to really "get it out there."

No Relief

My rhuematologist's office is closed due to the tremendous ice and snow storm.  When I spoke with the office yesterday, doc said he wanted to make certain there was no underlying conditions in the shoulder (such as a tear or injury) and so I should see a shoulder specialist.  I called to make that appointment and can not get in to see her until FEB. 22ND.  Oh please, that is just ridiculous!  I wanted to let my rhuematologist know this.  Maybe he will do something for me in the meantime.  Believe me I will be calling again tomorrow, but who knows if they will be open with the weather as it is.  As I wait, I am in pain.