Chesapeake, Virginia for Christmas

Friday December 21st we left for Norfolk Navy Base where my son Jason is stationed.  Actually they live in Chesapeake, Virginia.  It took is 9.5 hours to get there and they were all standing outside waiting for us.  They included Jason, Rose, Junior, Jarrett, Josh and Jonah and FAITH!!!! It was so good to see them all but especially FAITH.  I had not seen her since she was 12 and she will be 20 in February.  She has grown into a beautiful young woman that is a Sophomore in College with plans to go to Florida State next year. Hugs were happening.  We had a nice Christmas Eve service at their church and Hors d'oeuvres and Honey Baked Ham after..  Did shopping and the NAS exchange and drove around and saw the Naval base and all the ships. I did not know there are only 10 active Air Craft Carriers now.  He is on the USS Theodore Roosevelt.  He is the Air Operations Officer for the flight deck.  They are giving it a complete makeover and it will be back out in the water this summer.  
We had an awesome visit, a great Christmas, got to experience some of their family traditions and more.  One of their family traditions is to listen to a CD of my mom singing Christmas Carols while they unwrap presents.  We also told the kids about our favorite Christmas growing up.  That was nice. Santa was good to everybody and the trip was too short.



On the Lupus end of things.  My legs, knees were never worse.  I had to be helped out of the chair almost every time I got up.  I believe it was due to the bedroom being on the 2 nd floor ( all the bedrooms were) so I had to go up and downstairs several times a day.  I avoided it as much as possible but I paid dearly..I am taking 3 cellcept now.  2 in morning and 1 at night. I see my rheumotologist next week.

Other than that it was a perfect trip!!!

For to us a child is born,to us a son is given,
and the government will be on His shoulders.
And He will be called Wonderful Counselor, Mighty God,
Everlasting Father, Prince of Peace.
Isaiah 9:6

Thanksgiving Weekend

Thanksgiving Day 2012, on Prednesone which may be a good thing to get me through. I had a tooth pulled and am now experiencing a dry socket but all the family coming to our house!! So excited.
Jason and Rose
Regina And Dave
Heather and Matt
Jason and Becky
And 12 of our 13 grandchildren.  Total of 23
It was a awesome long weekend.  Lots of excitement and lots of help from my daughters.  Heather, Gina and Rose stayed in the kitchen and helped which was wonderful.  Hubby washed all the dishes from Christmas dinner by hand. All of them.  So wonderful. My Lupus did not keep me down and it was a wonderful Thanksgiving.  I am so blessed.

Thanksgiving Week

Itching all over again....Lupus....the wolf.....I have not slept in 3 nights. Unfortunately I don't think hubby has either.  I Called my Dr. And she's put me back on prednesone for the itching.  Too tired during the day to do anything.

Absessed tooth which is causing pain in ear, neck glands and shoulder.   Had to get tooth extracted yesterday.  The day after pain is still very real.  Alternating tramadol and ibuprofen.  Had to go downtown Atlanta for a meeting. . I barely made it through I was so uncomfortable.  Thanksgiving is in 2 days and 23 family  members coming.

The hardest thing to do is not clean like a lunatic like I usually do.  I just can't and they don't care anyway.  15 minutes after our four kids their spouse and 12 grandchildren are here it won't matter anyway and I am more excited to just be with my family then anything.

The best made plans of mice and men often go astray.....

I wish it weren't true - but I can't act like it isn't: I have joint pain BEHIND my knees, plus a wave of fatigue that can't  be ignored. Bummer! It really should come as no surprise, given all the times this has happened as soon as I get off Prednesone but typically the pain is in my kneecaps....so another place to hurt...great....

The good news is I saw my Rheumy yesterday and she is starting me on a new medication called Cellcept.  I have researched it at this point and the research was positive..... if I just don't read the side effects.....

When I went to pick up my Cellcept the pharmacist ask me if I was having a organ transplant?!?!?!?!?....hence the research.... Uh...no....she then explained it is used for many things and when I said I have Lupus she was quick to nod and tell me it is used for  autoimmune diseases as well.....

The plan had been to have the Benlysta IV treatments but my insurance wants a $2400 deductible which we don't have....so doc thinks this will do the trick.  I take my first one tonight....

The best made plans of mice and men often go astray.....

For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11 NIV)

I blew out my knee (well it felt like it!%!%)

Kielce mountain camping trip.  We have been looking forward to this all year!!!!
It's been a year since we have been here...a year since we have camped...A year since I was diagnosed with Lupus.  A year since I started blogging.

The Weather in North Carolina was great! The lows in 40's highs in 60's beautiful weather.  Only rained one night which made good sleeping in the camper.  Pretty sure we hit peak leaf color but they just weren't as brilliant as usual. Very few red leafs.  Yellow is everywhere and by far the most  prominent color.

We have had great family dinners with Teena and Gary in their cabin as well as our camp site.  We drove on the Blue Ridge Parkway and visited our favorite spots like the apple orchard and made many trips around Kierce Mountain in the 4 wheeler.  I didn't drive that much this time.  Mostly Rick drove and we couldn't go anywhere that Marley wasn't right there with us.

The first couple days here I was doing good, with little pain but I could tell the 4 steps up into the camper were wearing on my knees.
Hip pain was bad mostly getting in and out of Ricks truck.
Knee pain continued to get worse even though on prednesone...

Thursday was a bad day.  We went to Burnsville and shopped a little and I came back to camper and laid down most of the afternoon.

Friday worse day yet.  We did a tour of Hwy 197 climbing in and out truck to take pictures of beautiful scenery and waterfalls when we got back I was walking from camper bathroom to kitchen which is  down 2 steps and I had a pain piercing like a knife to my left kneecap.  I applied heat with a heated rice bag and later with a hand and foot warmer like hunters use and an Ace bandage. This make a great heating pad. Took extra Flexeril and max of pain and other meds I can take for one day and still in pain....

The nights were good and we slept well.  We were loving our flannel sheets.

Today Saturday is the last full day here...seems we have experienced the quickest week in all of history....

My left knee cap is swollen I will try to take it easy the rest of the trip but pretty sure it's serious as I can not bend and apply any weight on it.  As long as I keep it straight it's ok.  I have to remember to lead with my right leg.....

I have a  Rhuemotologist visit next Friday but I am thinking I will have to see her before then....

All in all a great trip.  We love our camper.  We love the North Carolina mountains and just getting away has done us both good. We thank God for the majestic mountains and the beautiful scenery that we love so much up here.

We thank God for loving us and keeping us safe and even for our pain.  Getting old is not fun but we find we are still blessed beyond measure.

NOT MY KNEE  :)
But how it feels!!



And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.
 Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong.
 2 Cor 12:9-10

My Lupus is in the active stage...

My visit (Sept.28) with Dr Jonnala, my Rheumotologist was very interesting.  First of all I was hurting bad...I had been hurting this week and was ready to get some answers. When she walked in the first thing she said is how long have you had that skin rash?  I told her I had it when I was there the last time but not as bad so I had it over a month. She ask me how I was feeling and I told her about my severe hip pain, knee pain, lack of energy and she immediately said my "Lupus was in the active stage and we need to get it under control.  So we need to get you on Benlysta.". She told me it was an intravenous drug and I would have to come in every 2 weeks for a 1 hour treatments for 6 weeks than if all was going well I would start on monthly 1 hour treatments.  This is the new medication they talked about at the Lupus Symposium. I was so glad to hear her recommend it before I had to ask her about it.  I am very concerned about it but it sounds like the only thing to get my Lupus under control.....please pray for me that this works.  It has tons of side effects but according to her I am a prime candidate for it and I will feel so much better once it gets in my system.  I guess it takes a month or so....but FIRST we have to see if my BCBS Insurance will cover it. Then the dr orders it specifically for my height, weight etc...it may take up to 2 weeks to get it set up. Thanks for your continued support in my Lupus Journey....and yes, I am back on Prednesone....

• Deuteronomy 7:9 (NIV)
  Know therefore that the lord your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commandments.

Lupus Symposium

I went to the Lupus Symposium  Sept. 22.  I am so glad I went.  I learn so much and was even empowered to speak to my doctor and even challenge her about being so quick to use prednesone and not using the new medication that just came out.  (Belimhmab)

I also learned Plaqunel the medication I am on that was also used to treat Agent Orange also has been used for 50 years for Lupus because there was nothing else other than prednesone and aspirin.

AND if you were diagnosed with Lupus 40 years ago you were told to go home take these meds and you might live 5 years!!!!! Wow!!!

Lupus is still a misunderstood disease and needs a lot more exposure and research to get a cure...the symptoms are so off the charts and different for every patient it is sometimes years before you are diagnosed correctly.

I believe I had it for years looking back over my symptoms before my Dr diagnosed it but I am so thankful she did and it only took 2 doctors not 4 or 5 like so many have to do.

They had  4 Drs that spoke 2 Rhemotologist , a cardiologist and a neurologist.  They each spoke for about 20 minutes on their aspects of lupus and how it effects the organs and then they gave us 1 hour to ask questions.  It was so inspiring to hear all these ladies from ages 8 yrs old to elderly have the same thoughts questions and concerns as me.  At the end there was a Patient Panel with several stories.  Very inspiring..

John 6:2 (NIV)

and a great crowd of people followed him because they saw the signs he had performed by healing the sick.